Healthcare Stories
Produced by the Resiliency Center, UtahPresents,
and the Center for Health Ethics, Arts, and Humanities.
Healthcare Stories
Produced by the Resiliency Center, UtahPresents,
and the Center for Health Ethics, Arts, and Humanities.
HEALTHCARE STORIES: GUTS! | COMING FEBRUARY 11, 2027
Healthcare Stories provides a rare public space for people to share their experiences of health and healthcare.
Why healthcare in particular?
There’s so much vulnerability around health, illness, injury, grief – and even joy.
Why do people come?
To connect to other people, learn about their community, and experience a collective sense of awe at being part of something larger.
2026 Storytellers
The 2026 Healthcare Stories theme was "Together".
On March 5, 2026, UtahPresents, the Resiliency Center, and the Center for Health Ethics, Arts, and Humanities presentedd an evening of storytelling with the eighth installment of Healthcare Stories at Kingsbury Hall. Together is the way that we get things done. The spoken and unspoken ways that we depend on each other. This year’s healthcare stories might be about taking on complex challenges as a community, the ripples that spread from a single conversation or event to create waves, seeing the good in each other when we can’t see it in ourselves, or how we witness and celebrate defining moments of what it means to be human.
2027 Season Announcement
Healthcare Stories: Guts!
Call for stories coming this fall.
RECORDINGS & TRANSCRIPTS
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Transcription
We're coming tonight.
Health Care Stories
is a shared event
every single day
you have a sense.
We're just honored
to help bring
this burden away
with our colleagues
in the center of
health and how
cool it is that we,
at the University
of Utah, have some
virtual to check
out what else we
have going on and
what's to come.
It's a little bit
of everything.
Theater, dance,
music, circus,
projects that cross
one or more of those
lines. This Saturday
we're hosting some
of the best popular
films from the beloved
band found from us
all brought to work.
For we from today, we
present the Lord of
Many Chaves and
Kenneth Cohen and his
band with the evening
self-reconference of
the Wild Days of John
Coltrane. They will
put a term of 100
this year. And at the
end of the month, we
welcome the Dancer
Alicia of the MoMAX,
one of the country's
greatest dance companies
that remain out of
the MoMAX show that
will blow you away.
All of this to
say, you'll be
able to see lots
more of you soon.
I want to thank
the generous
sponsors to be able
to encourage you
as any top present
as possible.
Thank
you, Chloe.
I'm Megan Call,
Licensed Psychologist,
Director of
the Resiliency
Center, Associate
Chief Wellness
Officer, and I am
thrilled to be with
you this evening.
Stories are
electric. Literally.
When we listen to a
story, the auditory
system in our brain
lights up. It sends
pulses across our
neurocircuitry to
other areas of our
brain, activating them,
our visual cortex,
our motor cortex,
our emotional
processing centers.
If we looked at
an image while we
were listening to
a story, we would
see, as Clarissa
Pinkola-Estes says,
a picture that
sparkles and shimmers.
stories enliven us and
that is why we are here
this evening to be
part of something that
is life-giving together
i am so grateful
to utah presents
they are part of our
partnership trio they
give us the physical
space and the expertise
for this night to
happen they are generous
with our questions
and our requests, and
they are willing to
share their expertise
and suggestions
because they see things
that we do not see.
I'm part of the
Resiliency Center, and our
focus with the
Resiliency Center is to
create thriving health
care professionals,
systems, and communities,
and we are part
of the larger Osher
Center for Integrative
Health, where the
mission is to promote
whole-person health
across the University
of Utah and the
surrounding areas.
I want to give a
personal shout-out to my
boss and chief wellness
officer, Dr. Amy
Locke. She has been
supportive of this
event since its
inception, and to two
colleagues, Kathy Willits
and Joe Borgenick,
the chiefs of marketing
and communication
who amplify this
event with their
teams every year.
And to talk about
our partnership a
little further and wrap
up this introduction,
Gretchen. Hi,
I'm Gretchen Case.
I'm the director of
the Center for Health,
Ethics, Arts, and
Humanities. We have
a really long name
because we work at the
intersection of lots
of disciplines and
professions. But at
the center of our work
always is the human
experience of health
and health care.
so this is our eighth
show and we know what
we are here to do we
are not a competition
we're not an open
mic night we're not a
comedy show we're not
a ted talk but we have
elements of all of those
what we are here to
do is bring you seven
true 10-minute stories
stories told by the
people who experienced
them. From all the
submissions we got last
fall, we selected a
range of voices that we
think you might not
have heard otherwise.
So what you are about
to hear tonight is
the result of a
months-long process of
reflection, distillation,
and connection.
You are going to
hear the version of
the stories that
are true tonight.
there's always more.
So guiding us
through this evening
is Ivan Vasquez.
he'll be our emcee,
and he told his
story here in 2023.
Actually, we have quite
a few of our former
storytellers out in
the audience, and
we're happy to have
them back every year.
This year's theme
is Together.
Ivan?
Megan, first of
all, I want to thank
you for inviting me
back tonight after
three years. it
means a lot to me.
I first got the email
from Gretchen a couple
of months ago inviting
me to come back
and do this and of course
I was super excited
because I had so much
fun the first time
and that excitement
lasted all of five
minutes when I
realized holy ****
they forgot they They
completely forgot
what happens when
you place me in
front of an audience
with no script
and unrestricted
access to a mic
and just tell
me to be myself.
Three years ago,
that turned into an
accidental 10-minute
poetry slam that
if you were here,
I really hope you
enjoyed. And if you
weren't here, stay
tuned because I can't
promise it's not
going to happen
again tonight. night.
When I first stood
on the stage,
the theme of the
night was wonder, and
I got to tell
you all about my
experiences as an
openly transgender man
working in a healthcare
setting at the
height of the
pandemic, and how those
experiences impacted
my transition.
Tonight's theme,
like Gretchen said,
is together.
Every year, we come
together, and we come
up with a brand new
theme for these events,
and we pour our hearts
and our souls into
it and we let that
theme drive the event.
But regardless of
the name we give
it, tonight's
theme, Together,
it is so special
because that one word is
what is at the core of
why we come together
and why we put so much
effort into this. You
being here tonight,
our storytellers being
here tonight, open and
vulnerable, sharing
their lives with you.
It is an acknowledgement
and a celebration
of the power behind
together and what
happens when we all come
together, especially
in times of hardship.
I had a moment a couple
of weeks ago, admittedly
because I was thinking
about the event
tonight and what I was
going to talk to you
about, and I had a
moment early in the
morning when I got up to
walk my golden retriever,
which if you're
familiar with the breed,
you know that they will
greet everyone they
meet like it is their
long lost love. And
my Chloe Jane is no
different. So even though
I was freezing and
shivering, I went out.
And of course, we run
into these two young
men who were completely
taken by Chloe
Jane. And they
wanted to say hi. And
even though I was
grumpy and annoyed and
cold, because I'm
Puerto Rican so I'm not
really built for
this kind of weather.
I decided to be polite
and entertain the
interaction and so we
got to talking and we
started walking and
we started laughing
and a couple of minutes
in I realized I am
not cold anymore. I'm
not grumpy anymore.
I'm not annoyed. I'm
just kind of happy to
be here and that moment
really drove it home
for me. that is what
togetherness does these
two strangers that
just showed up out of
nowhere managed to do
what my winter wardrobe
couldn't do and I was
really excited about
that tonight we have
seven storytellers that
are going to share
stories of difficult times
that thankfully they
did not have to face
alone and as I say that
I want to I want to
make sure I don't
minimize what it's like
when we have difficulties
in our lives and
there isn't somebody
there by our side because
it's not always an
option and that can feel
really heavy and that
is why what I'm hoping
we take away from
tonight is strength and
inspiration to get us
through those times.-
Chloe Jones:
Welcome everyone. Hi.
Audience:
Whoo.
Chloe Jones:
I'm Chloe Jones. I'm the executive director here at Utah Presents. Thank you for coming tonight. Healthcare Stories is a cherished event every season at Utah Presents. We’re so honored to help bring this program to life with our colleagues in the Center for Health Ethics, Arts, and Humanities and the Resiliency Center. When I introduce this event, I like to pause and to acknowledge how cool it is that we at the University of Utah have a Center for Health Ethics, Arts, and Humanities and a Resiliency Center.
Audience:
Whoo.
Chloe Jones:
And Utah Presents is pretty cool, too. So, I want to encourage you all to check out what else we have going on in the months to come. It is a little bit of everything, theater, dance, music, circus, projects that cross one or more of those lines.
This Saturday, we're hosting some of the best outdoor films from the beloved Banff Mountain Film Festival World Tour. A week from today, we present award-winning jazz band, Emmet Cohen and his band, for an evening celebrating the music of Miles Davis and John Coltrane. They will both turn 100 this year. At the end of the month, we welcome the dancer-illusionists called MOMIX, one of this country's greatest dance companies. They're doing an Alice in Wonderland show that will blow you away. All this to say we hope to see lots more of you soon.
I want to thank the generous sponsors who made this entire season at Utah Presents possible, Gordon and Connie Hanks, Dan John and Eric Clunky, Nancy Peery Marriott, the McCarthey Family, Dinesh and Kalpana Patel, Salt Lake County Zoo Arts and Parks, Sally Schatz, Alice and Kevin Steiner, the Beverly Taylor Sorenson Foundation, Kyle Treadway and Greg Pedroza, Kenworth Sales, and Utah Division of Arts & Museums.
Now, our show is an hour and ninety minutes, and there’s no intermission. I’m going to encourage you all to take a moment to check, double-check that your phones are on silent. No flash photography tonight please. If you need to exit, there are through the doors you came through, but there are also exits on either side of the stage.
With that, I'm delighted to welcome to the stage two of the most amazing people at the University of Utah, Gretchen Case and Megan Call.
Audience:
Whoo.
Megan Call:
Thank you, Chloe. I'm Megan Call, licensed psychologist, director of the Resiliency Center, Associate Chief Wellness Officer, and I am thrilled to be with you this evening.
Stories are electric, literally. When we listen to a story, the auditory system in our brain lights up. It sends pulses across our neurocircuitry to other areas of our brain, activating them, our visual cortex, our motor cortex, our emotional processing centers. If we looked at an image while we were listening to a story, we would see, as Clarissa Pinkola Estés says, a picture that sparkles and shimmers. Stories enliven us. That is why we are here this evening, to be part of something that is life-giving together.
I am so grateful to Utah Presents. They are part of our partnership trio. They give us the physical space and the expertise for this night to happen. They are generous with our questions and our requests, and they are willing to share their expertise and suggestions, because they see things that we do not see.
I'm part of the Resiliency Center, and our focus with the Resiliency Center is to create thriving healthcare professionals, systems, and communities. We are part of the larger Osher Center for Integrative Health, where the mission is to promote whole-person health across University of Utah and the surrounding areas.
I want to give a personal shoutout to my boss and Chief Wellness Officer, Dr. Amy Locke. She has been supportive of this event since its inception, and two colleagues, Kathy Wilets and Joe Borgenicht, the chiefs of marketing and communication who amplify this event with their teams every year. To talk about our partnership a little further and wrap up this introduction, Gretchen.
Gretchen Case:
Thank you. I am Gretchen Case. I'm the Director of the Center for Health, Ethics, Arts, and Humanities. We have a really long name because we work at the intersection of lots of disciplines and professions. But at the center of our work always is the human experience of health and healthcare.
So, this is our eighth show, and we know what we are here to do. We are not a competition, we're not an open mic night, we're not a comedy show, we're not a TED Talk, but we have elements of all of those. What we are here to do is bring you seven true 10-minute stories told by the people who experienced them. From all the submissions we got last fall, we selected a range of voices that we think you might not have heard otherwise.
So, what you are about to hear tonight is the result of a months-long process of reflection, distillation, and connection. You are going to hear the version of the stories that are true tonight. There's always more.
So, guiding us through this evening is Iván Vazquez. He'll be our emcee. He told his story here in 2023. Actually, we have quite a few of our former storytellers out in the audience, and we're happy to have them back every year. This year's theme is Together. Ivan?
Iván Vazquez:
Hello, everyone. Gretchen, Megan, first of all, I want to thank you for inviting me back tonight after three years. It means a lot to me.
I first got the email from Gretchen a couple of months ago inviting me to come back and do this. Of course, I was super excited because I had so much fun the first time. That excitement lasted all of five minutes when I realized, holy crap, they forgot. They completely forgot what happens when you place me in front of an audience with no script and unrestricted access to a mic and just tell me to be myself.
Three years ago, that turned into an accidental 10-minute poetry slam that if you were here, I really hope you enjoyed. If you weren't here, stay tuned because I can't promise it's not going to happen again tonight.
When I first stood on the stage, the theme of the night was Wonder. I got to tell you all about my experiences as an openly transgender man working in a healthcare setting at the height of the pandemic and how those experiences impacted my transition. Tonight's theme, like Gretchen said, is Together.
Every year, we come together and we come up with a brand new theme for these events, and we pour our hearts and our souls into it, and we let that theme drive the event. But regardless of the name we give it, tonight's theme, Together - it is so special because that one word is what is at the core of why we come together and why we put so much effort into this.
You being here tonight, our storytellers being here tonight open and vulnerable, sharing their lives with you, it is an acknowledgement and a celebration of the power behind Together and what happens when we all come together, especially in times of hardship.
I had a moment a couple of weeks ago, admittedly because I was thinking about the event tonight and what I was going to talk to you about. I had a moment early in the morning when I got up to walk my golden retriever, which if you're familiar with the breed, you know that they will greet everyone they meet like it is their long-lost love. My Chloe Jane is no different. So even though I was freezing and shivering, I went out and, of course, we run into these two young men who were completely taken by Chloe Jane, and they wanted to say hi. Even though I was grumpy and annoyed and cold, because I'm Puerto Rican, so I'm not really built for this kind of weather, I decided to be polite and entertain the interaction.
And so, we got to talking and we started walking and we started laughing. A couple of minutes in, I realized I am not cold anymore. I'm not grumpy anymore. I'm not annoyed. I'm just happy to be here. That moment really drove it home for me. That is what togetherness does. These two strangers that just showed up out of nowhere managed to do what my winter wardrobe couldn't do, and I was really excited about that.
Tonight, we have seven storytellers that are going to share stories of difficult times that thankfully they did not have to face alone. As I say that, I want to make sure I don't minimize what it's like when we have difficulties in our lives, and there isn't somebody there by our side, because it's not always an option, and that can feel really heavy. That is why what I'm hoping we take away from tonight is strength and inspiration to get us through those times.
-
-
Transcription
And now, for our
first speaker
of the night, we
have Steve Cho.
And Steve is an MD
-PhD student at the
University of Utah. He
is also the co-founder
and president of the
Utah Medical Orchestra.
We asked Steve, along
with all our other
storytellers, to answer
one question for us.
Their question this year
was, what would they
want to have a
lifetime supply of? And
Steve's answer was
Albany's sour gummy worms.
Let's welcome
Steve to the stage.
Music and medicine
both have fugues.
Musical fugues are a
little like a
game of tag.
It translates from
Italian to mean a chase.
And we do indeed
hear a musical chase.
Because you see, all
fugues, they start
the same way, with a
single musical idea.
A simple melody
that repeats
itself, that
chases itself, like
a dog chasing
her own tail.
And with each
repetition, the
music, it mutates,
it evolves.
It grows ever more
dissonant, ever more
dramatic, and you can
start to viscerally feel
this conflict brewing
as the music struggles
with itself, wrestles
with itself for measures
and measures and
measures until finally
there's a cadence.
A musical
conclusion where
everything you've
heard just makes
sense and fall
into place.
Now medicine
also has fugues.
But it means almost
the opposite.
It comes from
Latin and medical
fugues translates
to mean an escape.
In fugue states,
patience,
their memories,
they escape recall.
In famous historical
accounts of fugues, talk
of aimless and
compulsive wandering from
town to town as people
are driven by a maddening
loss of self, a loss
of self-identity.
So I also find it
ironic that the
etiology or the
medical cause of fugues
still escapes scientists
and physicians.
I feel like my
whole life has
been a struggle
of trying to put
these opposing
things together.
Music and medicine,
one defined by a pursuit,
the other by a loss.
Growing up, music
has been the
way that I've
expressed myself.
I'm not the best
at putting my
thoughts and
feelings into words.
Just ask any of
my ex-girlfriends.
I'm sure each of them
can tell their own
10-minute story up
here on that topic.
But playing the
piano, writing music,
that made sense to me.
And it made so much
sense that to the
chagrin of all Asian
parents out there, I ended
up with a liberal
arts degree in music.
but that alone wasn't
satisfying enough
because I've started to
develop this curiosity
for the natural
world around us and
inspired that that
curiosity for how snails
don't dry up on the
coast, for how lobster
hearts beat differently
for other hearts,
for how viruses
and immune systems
co-evolved,
inspired that these
things could not
only change lives,
they could save lives.
So after I graduated, I
decided that
I'd do it all.
I got a job working
in a medical research
lab in Boston. And at
the same time, I taught
piano at night and
continued to compose music
for different ensembles
around the city.
But while I was
teaching kids,
I found my mind
wandering to the
experiments I was
doing in lab, or the
patients I saw earlier
that morning. And
when I was in lab
doing my experiments,
I was distracted
with the symphonies
of Beethoven and
the fugues of Bach.
And this distraction,
it must have been
pretty apparent, because
my boss at the time,
either for my sake
or for the sake of
her experiments, I
kept on messing up,
advised that I go and
talk to Leonard Zahn.
Now, Dr. Leonard
Zahn, or Len,
is a world-renowned
physician scientist,
and also an incredible
trumpet player.
And he conveniently
had his lab
in the same
building as ours.
So I remember
one day, walking
down the three
flights of steps,
walking through his
labyrinth of a lab
with an army of
grad students and
technicians and
postdocs and scientists.
I got to his office
door. I knocked.
And he greeted
me with this big
smile, rimless
glasses, and a mustache
that was as
prolific as his CV.
And he invited
me in, sat down,
and I started to
tell him about this
dissonance, this
conflict I was
having between
music and medicine.
And I was wondering
if he could
enlighten me, give
me some advice.
and he proceeded to
tell me about this
guy he knew an md phd
physician scientist
conductor and i
remember lighting
up a bit perking up
because that's that
was it that's what
i wanted to do tell
me about him what
do i have to do and
he proceeded to tell
me that this guy
was the worst conductor,
the worst scientist,
and the worst physician
he had ever met.
That if I wanted
to be the best
at something, I
couldn't do it all.
I needed to give
something up.
And I had this vision
of me 15 years later
and someone saying,
that's Steve Cho. He
is the worst pianist,
the worst scientist,
and the worst physician
I have ever met.
and so I also realized
that I had to let
something go and
that thing was music
and so I started
to rebrand
myself as just
a scientist.
I doubled down on
my applications
to MD PhD programs.
I stopped teaching
piano. I stopped
writing music
and what a time it was
for me to let go of
that part of myself
because you see that
conversation with Len
it happened just a
couple of months before
the COVID-19 pandemic
now I only remember
bits and pieces of that
time in something of
a fugue state I found
myself wandering all
the way to Salt Lake
City, Utah, of all
places, to do my MD-PhD.
I remember I had a
drive-through white
coat ceremony where
I borrowed a friend's
beat-up Toyota
Corolla, and I drove it
right outside Kingsbury
Hall. I drove it
to one station, I
rolled down the window,
and someone plopped
down a stethoscope.
I drove to the next
station, rolled down
the window, someone
put down a white coat,
a Hippocratic Oath.
I remember learning
about cystic fibrosis
from a small Zoom
screen on a computer
perched on my stomach
as I sat in my bed.
And the only people
that I knew, I just
knew from the bridge
of the nose up.
Because we
were all masked
in social distancing.
And in these
moments, in these
moments without
music, I felt lost.
I had no idea what
I was doing here.
And so it was from
this space that I
founded the Utah
Medical Orchestra.
Now, the concept
of a medical
orchestra, it's not new.
There are scores
and scores of them
across the United
States, and almost
every major academic
medical center
has one. But to me,
the success of the
Utah Medical Orchestra
was personal.
It was validation. It was
vindication that
I could do it all.
And not only that,
that there was a
community of wanderers,
just like myself,
who did not feel complete
without both music
and medicine.
So I poured myself
into this. I spent
what little time I
had writing grants
and fundraising
for the orchestra.
I was hiring
conductors and forging
collaborations
with community
organizations like
the Utah Symphony
and the Museum of
Contemporary Art.
In addition to my
own PhD research,
I started a new
research project
looking at the
impact of a medical
orchestra on
healthcare communities.
And maybe I poured
a little bit
too much of myself
into this because
I fear that
I've become the
thing that Len had
warned me about.
I'm a washed-up pianist.
I'm a not-very
-productive Ph.D. student.
And I'm a truly terrible
medical student.
I'm still trying
to figure out
what the moral
of this story is
maybe it's that I'm
not very good at taking
advice or I need
better time management
I'm looking for that
cadence that moment
where all of this
comes into clarity
but you see
I think my fugue is
still being played.
Thank you.
Steve, thank you
so much for that.
Steve, in conversation
earlier today,
described his academic
pursuits as impractical.
And if this is what
impractical looks like,
I want that for
myself and I want that
for all of us because
it sounds beautiful.-
Ivan Vazquez:
And now for our first speaker of the night, we have Steve Cho, and Steve is an MD-PhD student at the University of Utah. He is also the co-founder and president of the Utah Medical Orchestra. We asked Steve, along with all our other storytellers, to answer one question for us. Their question this year was, what would they want to have a lifetime supply of? And Steve's answer was Albanese Sour Gummi Worms. Let's welcome Steve to the stage.
Steve Cho:Music and medicine both have fugues. Musical fugues are a little like a game of tag. It translates from Italian to mean a chase. And we do indeed hear a musical chase. Because you see all fugues, they start the same way with a single musical idea, a simple melody that repeats itself, that chases itself like a dog chasing her own tail. And with each repetition, the music, it mutates, it evolves. It grows ever more dissonant, ever more dramatic, and you can start to viscerally feel this conflict brewing as the music struggles with itself, wrestles with itself for measures and measures and measures until finally—there’s a cadence. A musical conclusion where everything you've heard just makes sense and fall into place.
Now medicine also has fugues, but it means almost the opposite. It comes from Latin, and medical fugues translates to mean an escape or a flight. In fugue states, patients, their memories, they escape recall. And famous historical accounts of fugues talk of aimless and compulsive wandering from town to town as people are driven by a maddening loss of self, a loss of self-identity. So I also find it ironic that the ideology or the medical cause of fugues still escapes scientists and physicians.
I feel like my whole life has been a struggle of trying to put these opposing things together. Music and medicine, one defined by a pursuit, the other by a loss. Growing up, music has been the way that I've expressed myself. I'm not the best at putting my thoughts and feelings into words. Just ask any of my ex-girlfriends. I'm sure each of them can tell their own 10-minute story up here on that topic.
But playing the piano, writing music, that made sense to me. And it made so much sense that to the chagrin of all Asian parents out there, I ended up with a liberal arts degree in music. But that alone wasn't satisfying enough because I've started to develop this curiosity for the natural world around us, and inspired that that curiosity for how snails don't dry up on the coast, for how lobster hearts beat differently for other hearts, for how viruses and immune systems coevolve, inspired that these things could not only change lives—it could save lives.
So after I graduated, I decided that I do it all. I got a job working in a medical research lab in Boston. And at the same time, I taught piano at night and continued to compose music for different ensembles around the city.
But while I was teaching kids, I found my mind wandering to the experiments I was doing in lab, or the patients I saw earlier that morning. And when I was in lab doing my experiments, I was distracted with the symphonies of Beethoven and the fugues of Bach. And this distraction, it must have been pretty apparent because my boss at the time, either for my sake or for the sake of her experiments, I kept on messing up, advised that I go and talk to Leonard Zon. Now Dr. Leonard Zon or Len, is a world renowned physician scientist and also an incredible trumpet player, and he conveniently had his lab in the same building as ours.
So I remember one day walking down the three flights of steps, walking through his labyrinth of a lab with an army of grad students, and technicians, and postdocs, and scientists. I got to his office door, I knocked, and he greeted me with this big smile, rimless glasses and a mustache that was as prolific as his CV. And he invited me in, I sat down and I started to tell him about this dissonance, this conflict I was having between music and medicine. And I was wondering if he could enlighten me, give me some advice. And he proceeded to tell me about this guy he knew, an MD-PhD, physician, scientist, conductor. And I remember lighting up a bit, perking up because that was it. That's what I wanted to do. "Tell me about him. What do I have to do?"
And he proceeded to tell me that this guy was the worst conductor, the worst scientist, and the worst physician he had ever met. That if I wanted to be the best at something, I couldn't do it all. I needed to give something up. I had this vision of me 15 years later and someone saying, "That Steve Cho, he is the worst pianist, the worst scientist, and the worst physician I have ever met." And so I also realized that I had to let something go, and that thing was music.
And so I started to rebrand myself as just a scientist. I doubled down on my applications to MD-PhD programs. I stopped teaching piano. I stopped writing music. And what a time it was for me to let go of that part of myself because you see that conversation with Len, it happened just a couple of months before the COVID-19 pandemic. Now I only remember bits and pieces of that time. In something of a fugue state, I found myself wandering all the way to Salt Lake City, Utah, of all places to do my MD-PhD. I remember I had a drive-through white coat ceremony where I borrowed a friend's beat-up Toyota Corolla and I drove it right outside Kingsbury Hall. I drove it to one station, I rolled down the window and someone plopped down a stethoscope. I drove to the next station, rolled down the window, someone put down a white coat, a Hippocratic Oath.
I remember learning about cystic fibrosis from a small Zoom screen on a computer perched on my stomach as I sat in my bed. And the only people that I knew, I just knew from the bridge of the nose up because we were all masked and social distancing. And in these moments, in these moments without music, I felt lost. I had no idea what I was doing here. And so it was from this space that I founded the Utah Medical Orchestra. Now the concept of a medical orchestra, it's not new. There are scores and scores of them across the United States and almost every major academic medical center has one. But to me, the success of the Utah Medical Orchestra was personal. It was validation. It was vindication that I could do it all. And not only that, that there was a community of wanderers just like myself who did not feel complete without both music and medicine.
So I poured myself into this. I spent what little time I had writing grants and fundraising for the orchestra. I was hiring conductors and forging collaborations with community organizations like the Utah Symphony and the Museum of Contemporary Art.
In addition to my own PhD research, I started a new research project looking at the impact of a medical orchestra on healthcare communities. And maybe I poured a little bit too much of myself into this because I fear that I've become the thing that Len had warned me about. I'm a washed-up pianist. I'm a not very productive PhD student, and I'm a truly terrible medical student.
I'm still trying to figure out what the moral of this story is. Maybe it's that I'm not very good at taking advice, or I need better time management. I'm looking for that cadence, that moment where all of this comes into clarity.
But you see, I think my fugue is still being played. Thank you.
Ivan Vazquez:
Steve, thank you so much for that. Steve, in conversation earlier today, described his academic pursuits as impractical. And if this is what impractical looks like, I want that for myself and I want that for all of us because it sounds beautiful.
-
-
Transcription
Our next speaker
is Leisha Nolan.
She is a pediatrician
working with
the Utah State
Health Department.
And Leisha would love a
lifetime supply
of happiness.
Let's welcome
her to the stage.
Good evening.
So I'm going to
ask you all to give
me a little shout
if your parents
have no idea what
you do as a job.
Yeah. Okay, there's a
fair number of us in
this room. I am
definitely one of those.
I work in public
health, and as far as I
can tell, my parents
have no idea what I do.
This hasn't always
been true. I started
as a pediatrician,
and that's really
easy, right?
Everyone knows what a
pediatrician does.
They give you shots,
they look in their
ears, and they
stick in your mouth
and make you gag.
Everybody knows that.
But a public health
official, what
do they do?
i've gotten so i have
this little catch line
i say i look at data
to understand what's
causing utahns to be
sick and how we can
change that and that's
how i describe what
i do but it's not a very
satisfying description
and my parents really
just don't get it
i think the thing they
actually have grabbed
onto best they actually
captured during
the pandemic they and
all their friends now
really consider me
the Dr. Fauci of Utah.
And while I'm not
opposed to that, it's
not exactly what I do.
So I have a very hard
time talking about
what I do as a job.
So it was actually
quite nice when
this opportunity
came up to talk to
all of you and talk
about what I do
as a story because
it turns out
public health is a
pretty good story.
So I'm going to
tell you two stories
tonight. The first is
where public health
was missing and
the second is where
it was present in
an effort to really
help you understand
what I do and
actually what all of
public health does.
So first I'm going
to take you back to
2010 when I was a
pediatrician. I was
actually a pediatrician
and training.
And I went to Lesotho to
do a clinical rotation.
Lesotho is a tiny
little country
in the middle
of South Africa.
And it's a place that
probably most people
don't know, but it
was an amazing place
to go work. It was
absolutely beautiful.
But I worked in this
teeny little clinic
that had pretty limited
resources, but every
day I'd see kids come
in and work with them
and their parents to
figure out what was
wrong and get them back
out on the streets.
Until one day, I had
a family running,
carrying their
child in their arms.
And this child
was a little boy
around five, and
he was seizing.
He was seizing
uncontrollably.
And as I understood
it from the family,
this is a little boy
who'd been completely
healthy. Until that
day, they walked out and
they found him on the
ground in seizures.
And they could do
nothing to stop it. so
they carried him to
the clinic and brought
him to myself and
the few other doctors
that were there and
we did everything we
could we looked at
all the tests we could
which weren't really
extensive there and we
did whatever medication
we gave the medication
we could which
again wasn't very
extensive and it didn't
work that little boy
died that day and it
was extremely crushing
and it was just we we
didn't know what we
did what we should
have done what went
wrong and so it was
super difficult but what
happened is that wasn't
the only time that
happened I was there
for four weeks and
over that period of
time I saw five things
just like that they
always were a little
boy they were always
between three and five
they always were
healthy until that day
and then suddenly
started seizing, and I
don't know what it
was. I never figured it
out. I left not knowing
what was going on.
I suspect, if I were
to guess, it was
something like those
kids had gotten into the
pesticides that their
families were applying
to the fields, or
there was something
in the water that was
toxic that they were
being exposed to, but
I never knew. And as
far as I know, nobody
ever looked into it
or figured it out it
was super frustrating
and so to me I was
always like who should
have been looking
somebody should have
been figuring this out
and so now I realize
it should have been
public health it should
have been me because
now I am here in
Utah doing public
health. I am the Utah
State Epidemiologist, and
it's my responsibility
to figure out when
something dramatic
like that happens,
why it's happening.
And I should, I'm
exaggerating a little bit.
It's not just me.
It's the public health
system, right? We have
an amazing public health
team here. We have the
Department of Health
and Human Services as
the state part, and
then we have our local
health departments,
which work at the local
level. But together,
we monitor for those
kind of things so that
we can figure out when
kids are seizing and
make sure whatever's
happening is corrected.
So you might say,
okay, yeah, that's,
that makes sense.
That's what we should
do. But those kind
of problems don't
come up in Utah.
And you might think
that, but I'm here
to tell you they do.
You just don't
hear about them
because we take
care of them.
And I want to
tell you a story
about when we
did this in Utah.
So this was just
a few years ago.
Our team got a call
from one of the
local health
departments on Friday
at 4 p.m. because
all public health
emergencies start
at Friday at 4 p.m.
And it was the local
health department
telling us that they
had four little kids
who'd recently been
diagnosed with Aztec,
which is sugar toxin
-producing E. coli.
For those non-nerds
in the audience, just
know that's a bad
bacteria that you don't
want and that can get
people really sick
and can kill them if
it goes long enough.
So we had four kids in
one area in one week
had all got diagnosed
with this infection.
And certainly in
Utah, we get it. It's
now and then we'll
have one-off people
who get this infection.
One now, one a
little later, one in
then. And it happens.
But to have four
kids get this in one
week in one area was
definitely abnormal.
So over the weekend,
our teams started
calling these families,
and they did interviews
and said, oh, what
was the kid eating
recently? Had they
been playing outside?
Were they in any water?
Had they played with
any pets? All the
questions trying to
figure out what could have
caused these kids to
get this infection.
And by Monday,
there hadn't been
any really clear
evidence, but we
actually got two
more calls of two
more kids with the
same infection.
And something
became really
clear. These are
all kids that
were between
three and seven.
They all lived
in one part
of the same part of Utah.
And they were all having
the same symptoms.
So the team really
buckled down, and they
called all these families
further, got more
details and more
details, asked them
every question they
could think of. And by
the next day, a pattern
started to emerge.
All these kids
had been playing
in kiddie pools
or slip and
slides or something
with water,
specifically with
water that was
from the secondary
water system.
So for those of
you who don't know,
most of Utah actually
has two water
systems going to
people's houses.
There's the water
that we're all used to
that comes out of your
taps, you drink, you
cook with, it's well
cleaned and it's safe.
But actually a large
part of Utah has
another piped water
system and that
water is specifically
piped in to
water your yard and
to use in plants.
it is not treated.
It's coming
essentially directly
from a reservoir to
people's yards
for their use. It
makes sense. Why
treat water you're
going to just water
your yard with?
But it turns out when
our investigators
were talking to
these families,
all these families
had used that
secondary water to
fill their kiddie
pool or to use on
the slip and slide.
And so that made us
rather suspicious.
And actually what
made us even more
suspicious is that day
we got two more calls
of two more little
kids who were sick.
And again, we quickly
asked them about
their water use and
where they were getting
their water, and sure
enough, both of them
had been exposed to
this kind of water.
So all of us in public
health were said,
wow, this is a smoking
gun, enough of a
smoking gun. We should
do something about
it so we don't get
more kids sick. So
the local health
department put out a
news release. They
put out all sorts of
information. Stop
using this water with
your kids. make sure
kids aren't drinking
it, make sure it's
not in kiddie pools.
And they put it out in
every way they could.
At the same time,
we're like, okay, we
have these great
stories, but let's see
where it is. So we went
and tested the water
in the pools, in
the pipes, in the
faucets, and actually
up in the reservoir.
And by the end of the
week, we actually had
identified that was
where the bacteria was.
Over the course of
that outbreak, we
had 13 kids get sick
in this one area.
Seven of them were
hospitalized, and
two of them actually
had kidney damage.
But we were able to
stop it in its tracks.
As soon as we knew
what it was and we put
out that press release,
we saw the cases
stop. No more kids
got sick. We were
able to stop people
from putting their kids
in that water and
getting them sick.
And we were also able
to treat that reservoir
so the bacteria
could be eliminated.
So we are here in
public health working in
Utah to make sure we
know what causes disease
so that we can stop
it before it goes on.
We don't have
the situation
that's in Lesotho
where people
don't know and
cannot solve it.
So although most of
you don't think about
public health every day,
it is something that
is in the secret in the
background in helping
us all through our
life. life. And I hope
at the end of this
talk you are able to go
out and help me explain
what I do as my job.
Thank you.
Alicia, thank you
so much for teaching
us both about public
health and why we
don't hold this event
on Fridays at 4 o
'clock, because honestly
I had wondered why.
Thank you also for
keeping us safe.-
Ivan Vazquez:
Our next speaker is Leisha Nolen. She is a pediatrician working with the Utah State Health Department and Leisha would love a lifetime supply of happiness. Let's welcome her to the stage.
Leisha Nolan:
Good evening. So I'm going to ask you all to give me a little shout if your parents have no idea what you do as a job. Yeah. Okay. There's a fair number of us in this room. I am definitely one of those. I work in public health and as far as I can tell, my parents have no idea what I do. This hasn't always been true. I started as a pediatrician and that's really easy, right? Everyone knows what a pediatrician does. They give you shots, they look in their ears and they stuff a stick in your mouth and make you gag. Everybody knows that. But a public health official, what do they do?
I've gotten so I have this little catch line. I say, "I look at data to understand what's causing Utahans to be sick and how we can change that." And that's how I describe what I do, but it's not a very satisfying description. And my parents really just don't get it. I think the thing they actually have grabbed onto best, they actually captured during the pandemic. They and all their friends now really consider me the Dr. Fauci of Utah. And while I'm not opposed to that, it's not exactly what I do. So I have a very hard time talking about what I do as a job.
So it was actually quite nice when this opportunity came up to talk to all of you and talk about what I do as a story, because it turns out public health is a pretty good story. So I'm going to tell you two stories tonight. The first is where public health was missing, and the second is where it was present, in an effort to really help you understand what I do and actually what all of public health does.
So first, I'm going to take you back to 2010 when I was a pediatrician. I was actually a pediatrician in training. And I went to Lesotho to do a clinical rotation. Lesotho is a tiny little country in the middle of South Africa. And it's a place that probably most people don't know, but it was an amazing place to go work. It was absolutely beautiful. But I worked in this teeny little clinic that had pretty limited resources, but every day I'd see kids come in and work with them and their parents to figure out what was wrong and get them back out on the streets.
Until one day, I had a family running, carrying their child in their arms. And this child was a little boy around five and he was seizing. He was seizing uncontrollably. And as I understood it from the family, this is a little boy who'd been completely healthy until that day. They walked out and they found him on the ground in seizures and they could do nothing to stop it. So they carried him to the clinic and brought him to myself and the few other doctors that were there. And we did everything we could. We looked at all the tests we could, which weren't really extensive there. And we did whatever medication, we gave the medication we could, which again, wasn't very extensive and it didn't work.
That little boy died that day and it was extremely crushing. And it was just, we didn't know what we did, what we should have done, what went wrong. And so it was super difficult. But what happened is that wasn't the only time that happened. I was there for four weeks and over that period of time, I saw five things just like that. They always were a little boy. They were always between three and five. They always were healthy until that day and then suddenly started seizing. And I don't know what it was. I never figured it out. I left not knowing what was going on.
I suspect, if I were to guess, it was something like those kids had gotten into the pesticides that their families were applying to the fields or there was something in the water that was toxic that they were being exposed to. But I never knew. And as far as I know, nobody ever looked into it or figured it out. It was super frustrating. And so to me, I was always like, "Who should have been looking? Somebody should have been figuring this out." And so now I realize it should have been public health. It should have been me. Because now I am here in Utah doing public health. I am the Utah state epidemiologist.
And it's my responsibility to figure out when something dramatic like that happens, why it's happening. And I'm exaggerating a little bit. It's not just me. It's the public health system. Right? We have an amazing public health team here. We have the Department of Health and Human Services as the state part, and then we have our local health departments, which work at the local level. But together, we monitor for those kind of things so that we can figure out when kids are seizing and make sure whatever's happening is corrected.
So you might say, okay, yeah, that makes sense. That's what we should do, but those kind of problems don't come up in Utah. And you might think that, but I'm here to tell you they do. You just don't hear about them because we take care of them. And I want to tell you a story about when we did this in Utah. So this was just a few years ago. Our team got a call from one of the local health departments on Friday at 4:00 PM because all public health emergencies start at Friday at 4:00 PM. And it was the local health department telling us that they had four little kids who'd recently been diagnosed with STEC, which is shiga toxin producing E. coli. For those non-nerds in the audience, just know that's a bad bacteria that you don't want and they can get people really sick and can kill them if it goes long enough.
So we had four kids in one area in one week had all got diagnosed with this infection. And certainly in Utah, we get it, it's now and then, we'll have one off people who get this infection, one now, one a little later, one and then, and it happens. But to have four kids get this in one week in one area was definitely abnormal. So over the weekend, our teams started calling these families and they did interviews and said, "Oh, what was the kid eating recently? Had they been playing outside? Were they in any water? Had they played with any pets?"
All the questions trying to figure out what could have caused these kids to get this infection. And by Monday, there hadn't been any really clear evidence, but we actually got two more calls of two more kids with the same infection. And something became really clear. These were all kids that were between three and seven. They all lived in one part of the same part of Utah, and they were all having the same symptoms. So the team really buckled down and they called all these families further, got more details and more details, asked them every question they could think of.
And by the next day, a pattern started to emerge. All these kids had been playing in kiddie pools or slip and slides or something with water, specifically with water that was from the secondary water system. So for those of you who don't know, most of Utah actually has two water system going to people's houses. There's the water that we're all used to that comes out of your taps you drink, you cook with. It's well-cleaned and it's safe, but actually a large part of Utah has another piped water system and that water is specifically piped in to water your yard and to use in plants. It is not treated. It's coming essentially directly from a reservoir to people's yards for their use.
It makes sense. Why treat water you're going to just water your yard with? But it turns out when our investigators were talking to these families, all these families had used that secondary water to fill their kiddie pool or to use on the slip and slide. And so that made us rather suspicious. And actually what made us even more suspicious is that day we got two more calls of two more little kids who were sick. And again, we quickly asked them about their water use and where they were getting their water. And sure enough, both of them had been exposed to this kind of water.
So all of us in public health were said, "Wow, this is a smoking gun, enough of a smoking gun, we should do something about it so we don't get more sick kids sick." So the local health department put out a news release. They put out all sorts of information, stop using this water with your kids, make sure kids aren't drinking it, make sure it's not in kiddie pools. And they put it out in every way they could. At the same time, we're like, "Okay, we have these great stories, but let's see where it is." So we went and tested the water in the pools, in the pipes, and the faucets, and actually up in the reservoir.
And by the end of the week, we actually had identified that was where the bacteria was. Over the course of that outbreak, we had 13 kids get sick in this one area. Seven of them were hospitalized and two of them actually had kidney damage. But we were able to stop it in its tracks. As soon as we knew what it was and we put out that press release, we saw the cases stop. No more kids got sick. We were able to stop people from putting their kids in that water and getting them sick. And we were also able to treat that reservoir so the bacteria could be eliminated.
So we are here in public health working in Utah to make sure we know what causes disease so that we can stop it before it goes on. We don't have the situation that's in Lesotho where people don't know and cannot solve it. So although most of you don't think about public health all of our day, it is something that is in the secret, in the background, in helping us all through our life. And I hope at the end of this talk, you are able to go out and help me explain what I do as my job. Thank you.
Ivan Vazquez:
Leisha, thank you so much for teaching us both about public health and why we don't hold this event on Fridays at 4:00, because honestly, I had wondered why. Thank you also for keeping us safe.
-
-
Transcription
Our next speaker
is Van Astin. Van
is a physician
assistant and medical
director for 4th
Street Clinic.
And Van would like
a lifetime supply
of freshly baked
sourdough bread.
Let's welcome
him to the stage.
Good evening, everyone.
Thank you for
coming tonight.
It's an honor to be here.
I have never had to
worry about health care.
Not when I was 14
years old, diagnosed
with Crohn's
disease, which is a
lot for a teenage
brain to comprehend.
Not in my 20s, when
my two daughters
were born three and
a half years apart,
both at 26 weeks
gestation and
weighing in
about two pounds.
Not even at 29 during
graduate school
when I was diagnosed
with cancer.
However, in graduate
school, I also got
the opportunity to
participate in the Emory
University Farm
Workers Project. The
university, for two
weeks every summer, would
gather a collection
of volunteer students
from multiple medical
programs and go down
to the fields of South
Georgia and provide
free medical care
to the migrant farm
workers that were there
picking our produce.
I sat there in the
dirt, in the grass,
amongst the vegetables,
and provided
free medical care
to people who
sat across from me
that had to worry
about health care
every single day.
And this, for the
first time in my
life, I was presented
with true poverty.
And this started
to rewire my brain.
It started to call
into question all of my
assumptions about our
society, our culture,
and our American
health care system.
It impacted me so
deeply that I went
back three years in
a row. And I even
took a job after
graduate school
working in South
Georgia so I could
continue to volunteer
with that program.
But the call of the
mountains was too strong.
And I eventually
came back home to
Ogden, where I took
a job working with
patients experiencing
homelessness.
And once again,
I was faced with
individuals that had
to worry about their
health care every
single day. But
this time, it was
in my own community,
in my own backyard.
And during this time,
I went to a lecture
about a topic
that I was really
interested in. It
was a newish topic at
the time. It was
called harm reduction.
So I listened to
the lecturer who
presented her story
about her struggles
with alcohol and
how she had failed
abstinence-only
programs multiple times.
and she described
how she had found
success by cutting
back on her alcohol use
to the point where
she could take care of
her family, she could
hold down a job,
she could pay her rent,
and she could be a
contributing member of
society. And throughout
this lecture, my
brain was spinning. It
was processing the
things that she was
saying. And I got so
excited that I went up to
her after the lecture
and I said, that was
amazing. Thank you for
sharing your story.
I understand how that
works with things like
alcohol, but how does
that work with meth?
And she looked right
at me and she said,
is less meth better
than more meth?
And my brain
just paused, went
in full buffer
mode because the
only answer to
that question is,
well, yeah.
And while my brain
was buffering,
she looked right
at me and she
said, we are all
substance users.
And my brain immediately
rebelled against
that idea. No, I'm not.
I am not a substance
user. But, oh yeah,
I am. There are
things that I rely on
every day to get me
through my day. And as
she walked away, what
was left of my preconceived
notions started
to melt away about
substance use and about
people experiencing
addiction. I started
to see my patients in
a totally different
light. I was able to
connect with them on
a more human level
because I started to
see what their lived
experience truly was.
And a few years
later, I took the
opportunity to
take a job at 4th
Street Clinic here
in Salt Lake as a
part of the street
medicine team.
And once again, I had
the opportunity to
sit in the dirt, in the
grass, in the parks,
across from my patients
who had to worry
about health care every
single day. And this
is where I met a
patient we'll call John.
John, like many
of our patients,
appeared much older
than he actually was.
He was very jovial.
He loved to talk to
us, but not so much
about medical care.
It took him about
six months before he
decided we were okay
to talk to about his
blood pressure
medication, his COPD, even
his ****** addiction,
and his meth use.
And one day we were
driving around town, and
we saw John walking
with all of his stuff
in a cart. He was
pushing his cart, and I
realized I had never seen
John standing before.
Every time we had
worked with him, he was
sitting on the ground.
He had something
covering his lap, and
this was very apparent
because I noticed
immediately that he had a
hernia in his groin the
size of a basketball
and we pulled over
immediately we said
hey John it's good to
see you and I pulled
him aside and I
said how come you've
never told me about
this before and he
said it's not a big
deal it doesn't hurt
I don't worry about
it I said John this
is a big deal and
he said no there's
nothing that we can
do and I said what do
you mean he said I
can't get surgery
nobody will do surgery
because of my meth.
And I said, John,
keep working with us.
Let's see what we
can do. And over the
next few years, we
continued to see
him on the street on
the regular basis.
I eventually
transitioned to a role
more in the clinic,
and we convinced
him to come in
and see us there.
It was a big deal for
him. He didn't like
to come into
structures, into the
clinic, but he agreed.
And there he was able
to access our behavioral
health therapists.
He was able to
access our dentist.
He was able to access
case management and so
many more resources
to the point where one
day he looked at me
and he said, I'm ready.
I said, what are
you ready for,
John? What are
we talking about?
He said, I'm ready.
He said, I'm
ready to go to
detox. And I
said, whoa, whoa,
whoa. Don't mess
with us on this.
As soon as you say
that, we're going to
get you there and
you know we will. So
if you're serious,
us, let us know. And
he said, I'm serious.
Let's go. So we
immediately arranged
a bed at detox for
him, and we got him
there that same day.
This started a snowball
effect in John's
life. He started to
see that he could work
through his addiction.
He started to see that
he could beat some of
the challenges that
he's been up against.
And over a period of
several weeks, he had
gone without meth. We were
able to get him into
the surgeon. We were
able to get his surgery
taken care of. Not
only that, but he
accessed substance use
treatment, including
methadone and eventually
suboxone.
And he came to see
me one more time, and
this time he said, I'm
ready. I said, John,
don't mess with
me like this, man.
And he said, I said,
what are you ready
for? He said, I'm
ready to go home.
He had reconnected
with his family. He
had reconciled with
them, and he knew
that it was time to
go back and be a part
of that family.
And he did. He just
disappeared on us one
day. We were able to
contact him and make
sure that he was
okay, but he reconnected
with his family.
And I know that's
the story that all of
you came here to
hear tonight, but
that's not the story
that I came to tell.
The story that
I came to tell
is that every
day we go back.
Every day we go to
the clinic and we
work with these
patients. The work
is not easy, but
we do it as a team.
And we know that
the only way
that we can do
this is together.
Thank you. Thank
you so much, Van.
The takeaway
there, everybody,
is do a little less meth.-
Ivan Vazquez:
Our next speaker is Van Aston. Van is a physician assistant and medical director for Fourth Street Clinic, and Van would like a lifetime supply of freshly baked sourdough bread. Let's welcome him to the stage.
Van Aston:Good evening, everyone. Thank you for coming tonight, it's an honor to be here. I have never had to worry about healthcare. Not when I was 14 years old diagnosed with Crohn's disease, which is a lot for a teenage brain to comprehend. Not in my 20s when my two daughters were born three and a half years apart, both at 26 weeks gestation and weighing in about two pounds. Not even at 29 during graduate school when I was diagnosed with cancer. However, in graduate school, I also got the opportunity to participate in the Emory University Farmworkers Project.
The university for two weeks every summer would gather a collection of volunteer students from multiple medical programs and go down to the fields of South Georgia and provide free medical care to the migrant farm workers that were there picking our produce. I sat there in the dirt, in the grass amongst the vegetables, and provided free medical care to people who sat across from me that had to worry about healthcare every single day. This, for the first time in my life, I was presented with true poverty. This started to rewire my brain, it started to call into question all of my assumptions about our society, our culture, and our American healthcare system. It impacted me so deeply that I went back three years in a row, and I even took a job after graduate school working in South Georgia so I could continue to volunteer with that program.
But the call of the mountains was too strong, and I eventually came back home to Ogden where I took a job working with patients experiencing homelessness. Once again, I was faced with individuals that had to worry about their healthcare every single day, but this time it was in my own community, in my own backyard. During this time, I went to a lecture about a topic that I was really interested in. It was a newish topic at the time, it was called harm reduction. So, I listened to the lecturer who presented her story about her struggles with alcohol and how she had failed abstinence-only programs multiple times. She described how she had found success by cutting back on her alcohol use to the point where she could take care of her family, she could hold down a job, she could pay her rent, and she could be a contributing member of society.
Throughout this lecture my brain was spinning, it was processing the things that she was saying, and I got so excited that I went up to her after the lecture and I said, "That was amazing, thank you for sharing your story. I understand how that works with things like alcohol, but how does that work with meth?" She looked right at me and she said, "Is less meth better than more meth?" My brain just paused, went in full buffer mode, because the only answer to that question is, "Well, yeah." While my brain was buffering, she looked right at me and she said, "We are all substance users." My brain immediately rebelled against that idea. "No, I'm not. I am not a substance user, but oh yeah, I am. There are things that I rely on every day to get me through my day."
As she walked away, what was left of my preconceived notions started to melt away about substance use and about people experiencing addiction. I started to see my patients in a totally different light, I was able to connect with them on a more human level, 'cause I started to see what their lived experience truly was. A few years later, I took the opportunity to take a job at Fourth Street Clinic here in Salt Lake as a part of the street medicine team. Once again, I had the opportunity to sit in the dirt, in the grass in the parks across from my patients who had to worry about healthcare every single day, and this is where I met a patient who we'll call John.
John, like many of our patients, appeared much older than he actually was. He was very jovial, he loved to talk to us, but not so much about medical care. It took him about six months before he decided we were okay to talk to about his blood pressure medication, his COPD, even his heroin addiction and his meth use. One day we were driving around town and we saw John walking with all of his stuff in a cart. He was pushing his cart, and I realized I had never seen John standing before. Every time we had worked with him he was sitting on the ground, he had something covering his lap. This was very apparent, because I noticed immediately that he had a hernia in his groin the size of a basketball.
We pulled over immediately, we said, "Hey, John, it's good to see you." I pulled him aside and I said, "How come you've never told me about this before?" He said, "It's not a big deal, it doesn't hurt, I don't worry about it." I said, "John, this is a big deal." He said, "No, there's nothing that we can do." I said, "What do you mean?" He said, "I can't get surgery. Nobody will do surgery because of my meth." I said, "John, keep working with us, let's see what we can do." Over the next few years we continued to see him on the street on a regular basis.
I eventually transitioned to a role more in the clinic and we convinced him to come in and see us there. It was a big deal for him. He didn't like to come into structures into the clinic, but he agreed. There he was able to access our behavioral health therapists, he was able to access our dentist, he was able to access case management and so many more resources to the point where one day he looked at me and he said, "I'm ready." I said, "What are you ready for, John? What are we talking about?" He said, "I'm ready." He said, "I'm ready to go to detox." I said, "Whoa, whoa, whoa, don't mess with us on this. As soon as you say that, we're going to get you there and you know we will, so if you're serious let us know." He said, "I'm serious, let's go."
So, we immediately arranged a bed at detox for him and we got him there that same day. This started a snowball effect in John's life. He started to see that he could work through his addiction, he started to see that he could beat some of the challenges that he's been up against. Over a period of several weeks he had gone without meth, we were able to get him into the surgeon, we were able to get his surgery taken care of. Not only that, but he accessed substance use treatment, including methadone and eventually Suboxone.
He came to see me one more time, and this time he said, "I'm ready." I said, "John, don't mess with me like this, man." I said, "What are you ready for?" He said, "I'm ready to go home." He had reconnected with his family, he had reconciled with them, and he knew that it was time to go back and be a part of that family, and he did. He just disappeared on us one day. We were able to contact him and make sure that he was okay, but he reconnected with his family.
I know that's the story that all of you came here to hear tonight, but that's not the story that I came to tell. The story that I came to tell is that every day we go back, every day we go to the clinic and we work with these patients. The work is not easy, but we do it as a team and we know that the only way that we can do this is together. Thank you.
Ivan Vazquez:
Thank you so much, Van. The takeaway there, everybody, is do a little less meth.
-
-
Transcription
And I would tell you
more, but it looks
like our next speaker
has joined us.
Very excited about
her costume. Let's
welcome Annie
Frazier to the stage.
Annie is an education
manager at PBS Utah,
and she would love
a lifetime supply
of A&W Zero Sugar
Root Beer and hugs.
I'm so thrilled
that all of our
friends have
joined us for this
special circle
time tonight.
And I'm especially
excited because we're
in Kingsbury Hall. I
grew up here. My mom
worked here for over
20 years, and I had
this as my stage. I
would come up here,
and I'd sneak up, and
I'd dance until the
really grumpy stage
manager would say,
Annie, get off my stage,
and now I get to be
on this stage to
tell you a Halloween
story about a monster
and Friday the 13th.
Once upon a time there
was a not so little
girl and she coughed
and she coughed but
when she was a little
girl she never coughed.
She danced and she ran
and she cartwheeled
everywhere that she
went but now she
coughed and she slept
and she felt sick. So
one day that not so
little girl was planning
an event with PBS
Utah I was in charge
of flying Daniel Tiger
into town to meet
hundreds of Utah children
and I didn't want
to be coughing all
over them so I went to
the doctor and said
I need antibiotics
and he said you need
a CAT scan next thing
I knew the doctor was
telling me that I had
a huge tumor growing
on my heart the monster
tumor or teratoma
was over five pounds
it was 13 centimeters
by 13 centimeters
and it was Friday the
13th it had hair and
teeth and it had grown
tentacles that had
wrapped around the
nerves of my diaphragm.
I suddenly had a
flashback to 2014
Christmastime. It was
a different hospital
and a different doctor
telling my husband
Jason that he had
a gastrointestinal
stromal tumor or a
gist. It had turned
cancerous but luckily
it hadn't spread.
they were able to
take it out but the
next six seven years
were pretty bad
and he wasn't able
to work the medical
bills it's like the
Grinch says about
noise but it was
bills bills bills all
the time and I was
trying to support
my young family as
a preschool teacher
now the biggest difference
from 2014 to 2023
was that in 2014 we
had this huge community
but because of family
turmoil and political
turmoil and a
pandemic our community
just got smaller and
smaller until I felt like
it was just us just
my little family and
my mom who never left
my side, and I didn't
know how we were going
to get through it.
I felt painfully alone
as I came to find
out that we were
a little bit too
neurodiverse and a
little bit too rainbow at
our house to be
everybody's cup of tea.
But next, I got
to meet Dr. Nico
Contreras. He's
a cardiothoracic
surgeon at Huntsman
Cancer Institute.
He came into my room
and reassured me that
while he'd never taken
out a teratoma and
neither had anybody
else in this location,
he knew how this part
of the body worked
and he was going to
take care of me. I
took a picture with
him and texted it to
my friend and she
texted back and said,
he is so hot.
I hadn't even noticed
if he was hot.
I had only noticed
how I felt.
I felt safe.
I felt at home.
Now, I would highly
recommend for any
working moms, spend 23
days in the hospital.
Not the surgery part.
11 hours of surgery
is just too much but
they take care of
everything so it's
even better than a
vacation but it's a lot
more expensive I was
taken so well I was
well cared for from
everybody that I met
and I fell into quite
a little routine
I'd watch the sunset
at night and I'd walk
down to the chapel,
I'd pray and meditate,
and I'd hit the
cafeteria for some
Cool Ranch Doritos and
a bottle of Starry.
And then Jason and I
would watch Seinfeld
as we went to bed.
I cannot drink
Starry to this
day. I absolutely
hate it.
i went through test
after test just
to find out if i
was strong enough to
go through surgery
well my doctors tried
to come up with
a plan and a plan
b and c and d and
all the way through
z to try and get
this tumor out of me
and during that time
my employee that had
been an intern for me
years before she came
to visit she gave me
the best advice she said
Annie you're going to
be asleep for a lot
of this so you have
to talk to your body
you have to tell your
body to trust the doctors
and that you can do
it. This gave me so
much to think about,
because for four decades,
I had not spoken to
my body as a friend.
Most of the time,
I spoke to her as a
critic, and I was
criticizing and complaining.
So I had to really
change my mindset,
but before I
could give my body
a pep talk, I
had to apologize.
As I was getting
ready for surgery, the
day before I was in
the shower and I looked
down while I was
washing myself at the
only part or two parts
of my body that I
actually hadn't hated.
I had nicknamed it
years before the best
chest in the West.
and as I looked down
how ironic that the
only part that I'd
actually liked was going
to be cut open armpit
to armpit and the
tears just flowed I got
out of the shower and
quickly got dressed
and turned on the tv
to distract myself I
put it on PBS Utah to
see what my work
families had been up to
and guess what was on
Daniel Tiger goes to
the hospital I sat in
my hospital bed and
just cried and I
remembered being a little
kid and turning on Mr.
Rogers neighborhood
I couldn't believe
that all these years
later he was still there
for me and I remembered
what he said every
day I like you just
the way you are the
day of surgery Jason
and I wheeled down and we
met the anesthesiologist
and the funny part
here is that this
time Jason said holy
**** you are so hot
I hadn't even noticed
if he was hot I only
noticed how I felt I
felt safe and I felt
at home I rolled
into surgery and Dr.
Contreras was there
from the very beginning
they started to strap
my arms down and Dr.
Contreras sat there
and he cupped my hand
between his and slowly
just started to rub my
hand while he silently
reassured me. Before
I fell asleep, I tried
to picture everybody
in my family. I
wanted their faces to
be the very last thing
that I thought of.
The next thing I
knew, I was waking
up in the ICU.
I was intubated,
and I looked
at Jason, and I
thought, holy ****,
I am still alive.
He looked so
uncomfortable.
A few months before,
he'd broken his back
riding a bike, and he
called it jackassery.
Mine was just bad
luck, but his was a
little bit different.
But he ended up
spending 22 nights on
those plastic pull-out,
super comfortable
beds and I looked at
him I knew he'd been
with me the whole time
that he could but I
was so thirsty so I
started signing I C E
and he didn't understand
and we had taught
all of our kids
basic sign language
when he they were little
and he didn't even
remember the alphabet
so I was about to fall
asleep so I quickly
looked at him I lifted
my middle finger
I gave him the
one sign that
I knew he would
understand
recovery was going
pretty well and I had
an epidural to help
with the pain but they
found blood clots in
my neck and all the
way down my arm so
they had to take the
epidural out in order
to start the blood
thinners and then I
experienced a pain unlike
anything else I
went into what they
called a pain coma for
two days. I had the
weirdest dreams and
one of them was that
they had moved my
hospital bed into a wing
where the hospital
was under construction
and there were cobwebs
and tools and I
was all alone and I
kept trying to call out
to the nurse's station
and nobody came.
I remember that Jason
whispered in my ear
Matthew Perry just
died and even though I
was a Friends fan I
thought to myself not
today Matthew Perry
not today my recovery
went beautifully
well and I was cared
for so intimately and
so lovingly by so many
of you and that's a
long road a painful
road and there's not
a single day that I'm
not in pain but I am
so grateful for the
community that helped
me through that 15
months later I was
finally off oxygen and I
didn't have quite so many
doctor's appointments
I'd maybe gone from
12 a month down to
four but I got out of
the shower one day, and
as I looked at myself
in the mirror, I looked
at this gnarly scar,
and I thought, well,
well done, Dr. Contreras.
I think you made
the best chest in
the West even better.
I thanked my body
from the crown
of my head to the
soles of my feet.
Even though I
hadn't been a good
friend, it sure had,
and it showed up
for me when I
needed it the most.
When I looked in the
mirror for the first
time, I saw a friend,
and I didn't even
notice if she was
hot. I only noticed
how I felt. I felt
safe. I felt at home.
And if you work with
preschool children
and you miss Halloween,
it's perfectly
acceptable to be
a princess unicorn
butterfly at
Thanksgiving dinner thank
you so much Nancy
everyone if you would
like to be treated
by a hot doctor at
some point there's
other ways of going
about it you do not
need a teratoma you
could have carpal
tunnel sinusitis there's
plenty of other
things that can be
treated you don't have
to take it that far-
Ivan Vazquez:
And I would tell you more, but it looks like our next speaker has joined us. Very excited about her costume. Let's welcome Annie Frazier to the stage. Annie is an education manager at PBS Utah, and she would love a lifetime supply of A&W zero sugar root beer and hugs.
Annie Frazier:
I am so thrilled that all of our friends have joined us for this special circle time tonight. And I'm especially excited because we're in Kingsbury Hall. I grew up here. My mom worked here for over 20 years and I had this as my stage. I would come up here and I'd sneak up and I'd dance until the really grumpy stage manager would say, "Annie, get off my stage." And now I get to be on this stage to tell you a Halloween story about a monster on Friday the 13th.
Once upon a time, there was a not so little girl and she coughed and she coughed. But when she was a little girl, she never coughed. She danced and she ran and she cartwheeled everywhere that she went. But now she coughed and she slept and she felt sick. So one day that not so little girl was planning an event with PBS Utah. I was in charge of flying Daniel Tiger into town to meet hundreds of Utah children and I didn't want to be coughing all over them. So I went to the doctor and said, "I need antibiotics." And he said, "You need a CAT scan." Next thing I knew, the doctor was telling me that I had a huge tumor growing on my heart. The monster tumor or teratoma was over five pounds. It was 13 centimeters by 13 centimeters, and it was Friday the 13th. It had hair and teeth and it had grown tentacles that had wrapped around the nerves of my diaphragm.
I suddenly had a flashback to 2014, Christmastime. It was a different hospital and a different doctor telling my husband, Jason, that he had a gastrointestinal stromal tumor or a GIST. It had turned cancerous, but luckily it hadn't spread. They were able to take it out, but the next six, seven years were pretty bad and he wasn't able to work—the medical bills. It's like the Grinch says about noise, but it was bills, bills, bills all the time. And I was trying to support my young family as a preschool teacher.
Now, the biggest difference from 2014 to 2023 was that in 2014, we had this huge community, but because of family turmoil, and political turmoil, and a pandemic, our community just got smaller and smaller until I felt like it was just us, just my little family and my mom who never left my side. And I didn't know how we were going to get through it. I felt painfully alone as I came to find out that we were a little bit too neurodiverse and a little bit too rainbow at our house to be everybody's cup of tea.
But next, I got to meet Dr. Nico Contreras. He's a cardiothoracic surgeon at Huntsman Cancer Institute. He came into my room and reassured me that while he'd never taken out of teratoma and neither had anybody else in this location, he knew how this part of the body worked and he was going to take care of me. I took a picture with him and texted it to my friend and she texted back and said, "He is so hot." I hadn't even noticed if he was hot. I had only noticed how I felt. I felt safe. I felt at home.
Now, I would highly recommend for any working moms spend 23 days in the hospital, not the surgery part. 11 hours of surgery is just too much, but they take care of everything. So it's even better than a vacation, but it's a lot more expensive. I was well cared for from everybody that I met, and I fell into quite a little routine. I'd watch the sunset at night, and I'd walk down to the chapel. I'd pray and meditate, and I'd hit the cafeteria for some Cool Ranch Doritos and a bottle of Starry. And then Jason and I would watch Seinfeld as we went to bed. I cannot drink Starry to this day. I absolutely hate it. I went through test after test just to find out if I was strong enough to go through surgery while my doctors tried to come up with a plan and a plan B and C and D and all the way through Z to try and getAnd during that time, my employee that had been an intern for me years before, she came to visit. She gave me the best advice. She said, "Annie, you're going to be asleep for a lot of this, so you have to talk to your body. You have to tell your body to trust the doctors and that you can do it." This gave me so much to think about because for four decades, I had not spoken to my body as a friend. Most of the time I spoke to her as a critic and I was criticizing and complaining, so I had to really change my mindset, but before I could give my body a pep talk, I had to apologize. As I was getting ready for surgery, the day before I was in the shower and I looked down while I was washing myself and the only part or two parts of my body that I actually hadn't hated, I had nicknamed it years before, the best chest in the west.
And as I looked down, how ironic that the only part that I'd actually liked was going to be cut open armpit to armpit and the tears just flowed. I got out of the shower and quickly got dressed and turned on the TV to distract myself. I put it on PBS Utah to see what my work families had been up to and guess what was on? Daniel Tiger goes to the hospital. I sat in my hospital bed and just cried. And I remembered being a little kid and turning on Mister Rogers' Neighborhood. I couldn't believe that all these years later, he was still there for me. And I remembered what he said every day. "I like you just the way you are."
The day of surgery, Jason and I wheeled down and we met the anesthesiologist. And the funny part here is that this time Jason said, "Holy crap, you are so hot." I hadn't even noticed if he was hot. I only noticed how I felt. I felt safe and I felt at home. I rolled into surgery and Dr. Contreras was there from the very beginning. They started to strap my arms down and Dr. Contreras sat there and he cupped my hand between his and slowly just started to rub my hand while he silently reassured me. Before I fell asleep, I tried to picture everybody in my family. I wanted their faces to be the very last thing that I thought of.
The next thing I knew, I was waking up in the ICU. I was intubated and I looked at Jason and I thought, "Holy crap, I am still alive." He looked so uncomfortable. A few months before he'd broken his back riding a bike and he called it jackassery. Mine was just bad luck, but his was a little bit different, but he ended up spending 22 nights on those plastic pullout, super comfortable beds. And I looked at him. I knew he'd been with me the whole time that he could, but I was so thirsty. So I started signing I-C-E and he didn't understand. And we had taught all of our kids basic sign language when they were little and he didn't even remember the alphabet. So I was about to fall asleep. So I quickly looked at him. I lifted my middle finger. I gave him the one sign that I knew he would understand.
Recovery was going pretty well and I had an epidural to help with the pain, but they found blood clots in my neck and all the way down my arm. So they had to take the epidural out in order to start the blood thinners. And then I experienced a pain unlike anything else. I went into what they called a pain coma for two days. I had the weirdest dreams, and one of them was that they had moved my hospital bed into a wing where the hospital was under construction and there were cobwebs and tools and I was all alone and I kept trying to call out to the nurses station and nobody came. I remember that Jason whispered in my ear, "Matthew Perry just died." And even though I was a Friends fan, I thought to myself, "Not today, Matthew Perry, not today." My recovery went beautifully well and I was cared for so intimately and so lovingly by so many of you and it's a long road, a painful road and there's not a single day that I'm not in pain, but I am so grateful for the community that helped me through that.
15 months later, I was finally off oxygen and I didn't have quite so many doctor's appointments. I'd maybe gone from 12 a month down to four, but I got out of the shower one day and as I looked at myself in the mirror, I looked at this gnarly scar and I thought, "Well, well done, Dr. Contreras. I think you made the best chest in the west even better." I thanked my body from the crown of my head to the soles of my feet, even though I hadn't been a good friend, it sure had, and it showed up for me when I needed the most. When I looked in the mirror for the first time, I saw a friend and I didn't even notice if she was hot. I only noticed how I felt. I felt safe. I felt at home. And if you work with preschool childrenand you miss Halloween, it's perfectly acceptable to be a princess unicorn butterfly at Thanksgiving dinner.
and you miss Halloween, it's perfectly acceptable to be a princess unicorn butterfly at Thanksgiving dinner.
Ivan Vazquez:
Thank you so much, Nancy. Everyone, if you would like to be treated by a hot doctor at some point, there's other ways of going about it. You do not need a teratoma. You could have carpal tunnel, sinusitis. There's plenty of other things that can be treated. You don't have to take it that far.
-
-
Transcription
Our next speaker is
Nancy Langman-Axto. Nancy
is a program coordinator
with U-Matter
Outreach and a social
work intern with the
behavioral health
integration team. And Nancy
would love a lifetime
supply of connection,
the kind that feels like
a hug without saying
a word. Let's welcome
her to the stage.
Being number 10 of 12
children in my family,
I grew up comfortable
in chaos. and I
learned early the
importance of being
heard and I've
perfected the art of
being the loudest
voice in the room.
With so many kids,
we split into
two groups, the
oldest and the
youngest. My oldest
brother, Steve,
then LaDawn,
Mark,
Lance,
Michelle,
Paul,
Bobby,
Mike,
Sarah,
me,
Shannon, and
the baby, Jake.
Even as the baby,
Jake grew to be
the biggest. He
was 6'5", and
his presence filled
up every room.
Mike was the
oldest of the
youngest, and
by contrast,
he was thin and
goofy, and his
laugh was joyous
and contagious.
He would gather the
youngest together
and play sports
in the backyard.
his favorite was
baseball and he made
a wiffle ball field
in the backyard
every time up to bat
he would point to
the telephone poles
and say this one's
going long distance
and then cheer for
himself as he rounded
our makeshift bases
I've embodied
Mike's arrogance
in everything of my life
Growing up between
Mike and Jake
was an adventure
Oh, it was full
of noise and
laughter and fun
But my life changed
when my brother
Mark was murdered
He was just
21 years old and
Mike adored him.
He was the little
brother that
would tag along
anywhere he could.
And Mike was
there that night.
Mark's death
fractured our family.
It was hospitals
and lawsuits
and newspaper
articles turned
to substance to
cope with this loss.
And not long after,
Did Jake join
him in substance
use to be with him?
Oh, I wanted to fix them.
I just didn't know how.
My family didn't
talk about addiction.
It was living in
whispers and judgments.
We had to pretend we
were okay on the outside.
i longed and dreaded
to hear information
about my brothers
over the years it
was either they were
okay and in jail or
would this be the
call they were gone
shannon and i would
visit them in jail
as often as we
could we wanted them
to know we love
them no matter what.
I remember the first
time visiting Mike.
Jail's not what I
thought it would be.
Shannon and I
waited in this
concrete room
where we were
ushered to another
concrete room,
and Mike sat on the other
side of glass in scrubs.
But it was so
good to see him.
We laughed the
entire time.
Mike could make me laugh
while he was in jail.
Both Mike and Jake
died of ******
overdose just
10 months apart.
The years leading
up to their death
was full of
mistreatment and harm.
They were
turned away from
places they went
to for help.
Jake told us about
being dismissed from
the hospital because
he was just an addict.
The criminal justice
system deepened
that harm.
They cycled in
and out of jail
with no resources
on the outside,
no real chance
for change.
At the second funeral,
I made a vow
to my family.
Our story will not
be one of tragedy.
It'll be of resilience.
Because I'm going to
be a better daughter.
I'm going to be
a better sister.
I'm going to love more.
Because even in
this big family,
Mike and Jake died alone.
I poured myself into
my wonderful husband
and my two beautiful
boys after that.
But when the youngest
was a toddler,
I knew it was time
to go back to work.
I started in
care management
at the university
clinics,
and I had the
privilege to
work with the
SPARC clinic.
Laura and Dr. Insa
taught me something
powerful, that
addiction medicine
isn't special,
unique, or even scary.
It's primary care,
but delivered
in a compassionate team.
I found something
wonderful in this work.
Peace,
purpose, and a newfound
connection to
my brothers.
I wanted more people to
have this kind of care.
I work with Justin
Knox, who also
lost his brother
to addiction.
My story became
our story.
And we started a suboxone
clinic for opioid
use disorder at the
Greenwood Center.
We created a home base, a
landing place
for our patients.
No matter what happens,
you can come back.
You don't have to
do this part alone.
Come back and see us.
At the beginning of this
clinic, we faced stigma,
resistance. distance.
I was told, I'm not
qualified for this work.
So I went back
to school. I
got my master's
of social work.
This education
changed everything.
I learned more
about addiction,
but more how
systems fail people
long before
addiction takes hold.
I focused in forensics.
I wanted to know
what happens
behind those
walls. My brothers
spent so much
of their time,
and I wanted to
prepare my patients
to just make sure
they don't go back.
With the unwavering
support of
my supervisor,
Teresa Lopez,
my dream project
came true.
This past January,
we went live with
collaborative care for
substance use disorder.
In all our primary
care, we provide
therapy, consult with
addiction psychiatry,
resources,
coordination
of care, right
alongside primary care.
We've delivered the SPARK
model to so
many patients.
I have the
honor to see my
brothers in my patients.
Some walk like Jake
and laugh like Mike.
My patient's
stories are full of
loss and tragedy,
just like mine.
But now, I'm not
responding to loss because
I'm a part of a team,
a part of a system.
I'm a part of
the change in
health care, that
we open doors
for addiction,
not shut them.
I don't know
what my family's
story is going
to be known for.
But I know that
I'm doing what I
love because I
loved my brothers.
And I'm excited for
what comes next.
How big can we make this?
So until then,
Night Snake,
thank you. thank
you so much nancy
um i have to hand it
to you that is a very
constructive way of
dealing with wanting
to get away from
your toddler my wife
and i have a four
-year-old and most of
the time we just lie
to her and then we
go out to a nice
restaurant that we
would never take her to
but now we are going
to re-evaluate that-
Ivan Vazquez:
Our next speaker is Nancy Langman Axtell. Nancy is a program coordinator with U Matter Outreach and a social work intern with the Behavioral Health Integration Team. And Nancy would love a lifetime supply of connection, the kind that feels like a hug without saying a word. Let's welcome her to the stage.
Nancy Langman Axtell:
Being number 10 of 12 children in my family, I grew up comfortable in chaos, and I learned early the importance of being heard. And I've perfected the art of being the loudest voice in the room. With so many kids, we split into two groups, the oldest and the youngest. My oldest brother, Steve, then Ladon, Mark, Lance, Michelle, Paul, Bobby, Mike, Sarah, me, Shannon, and the baby, Jake. Even as the baby, Jake grew to be the biggest. He was 6' 5", and his presence filled up every room.
Mike was the oldest of the youngest. And by contrast, he was thin and goofy, and his laugh was joyous and contagious. He would gather the youngest together and play sports in the backyard. His favorite was baseball, and he made a whiffle ball field in the backyard. Every time up to bat, he would point to the telephone poles and say, "This one's going long distance." And then cheer for himself as he rounded our makeshift bases. I've embodied Mike's arrogance in everything of my life.
Growing up between Mike and Jake was an adventure. Oh, it was full of noise and laughter and fun. But my life changed when my brother, Mark, was murdered. He was just 21 years old and Mike adored him. He was the little brother that would tag along anywhere he could. And Mike was there that night. Mark's death fractured our family. It was hospitals and lawsuits and newspaper articles.
Mike turned to substance to cope with this loss. And not long after did Jake join him in substance use to be with him. Oh, I wanted to fix them. I just didn't know how. My family didn't talk about addiction. It was living in whispers and judgments. We had to pretend we were okay on the outside. I longed and dreaded to hear information about my brothers over the years. It was either they were okay and in jail or would this be the call they were gone?
Shannon and I would visit them in jail as often as we could. We wanted them to know we love them no matter what. I remember the first time visiting Mike. Jail's not what I thought it would be. Shannon and I waited in this concrete room where we were ushered to another concrete room, and Mike sat on the other side of glass in scrubs. But it was so good to see him. We laughed the entire time. Mike could make me laugh while he was in jail.
Both Mike and Jake died of heroin overdose just 10 months apart. The years leading up to their death was full of mistreatment and harm. They were turned away from places they went to for help. Jake told us about being dismissed from the hospital because he was just an addict. The criminal justice system deepened that harm. They cycled in and out of jail with no resources on the outside, no real chance for change.
At the second funeral, I made a vow to my family. Our story will not be one of tragedy. It'll be of resilience because I'm going to be a better daughter. I'm going to be a better sister. I'm going to love more. Because even in this big family, Mike and Jake died alone.
I poured myself into my wonderful husband and my two beautiful boys after that. But when the youngest was a toddler, I knew it was time to go back to work. I started in care management at the university clinics, and I had the privilege to work with the SPARC Clinic. Laura and Dr. Insa taught me something powerful, that addiction medicine isn't special, unique, or even scary. It's primary care, but delivered in a compassionate team. I found something wonderful in this work, peace, purpose, and a newfound connection to my brothers. I wanted more people to have this kind of care.
I work with Justin Knox, who also lost his brother to addiction. My story became our story, and we started a Suboxone clinic for opioid use disorder at the Greenwood Center. We created a home base, a landing place for our patients. "No matter what happens, you can come back. You don't have to do this part alone. Come back and see us."
At the beginning of this clinic, we faced stigma, resistance. I was told I'm not qualified for this work. So I went back to school. I got my Masters of Social Work. This education changed everything. I learned more about addiction, but more how systems fail people long before addiction takes hold. I focused in forensics. I wanted to know what happens behind those walls my brothers spent so much of their time. And I wanted to prepare my patients to just make sure they don't go back.
With the unwavering support of my supervisor, Teresa Lopez, my dream project came true. This past January, we went live with collaborative care for substance use disorder in all our primary care. We provide therapy, consult with addiction psychiatry, resources, coordination of care, right alongside primary care. We've delivered the SPARC model to so many patients. I have the honor to see my brothers in my patients. Some walk like Jake and laugh like Mike. My patients' stories are full of loss and tragedy just like mine. But now, I'm not responding to loss because I'm a part of a team, a part of a system. I'm a part of the change in healthcare that we open doors for addiction, not shut them.
I don't know what my family's story's going to be known for, but I know that I'm doing what I love, because I loved my brothers, and I'm excited for what comes next. How big can we make this? So until then, night, Snake. Thank you.
Ivan Vazquez:
Thank you so much, Nancy. I have to hand it to you, that is a very constructive way of dealing with wanting to get away from your toddler. My wife and I have a 4-year-old, and most of the time we just lie to her and then we go out to a nice restaurant that we would never take her to, but now we are going to reevaluate that.
-
-
Transcription
Our next speaker is
Lindsey Thompson, and
Lindsey is the support
services senior
manager for the University
of Utah Hospital.
And her lifetime
supply wish is
to have all the
chihuahua puppies.
Let's welcome
her to the stage.
Dad died when I
was 11 years old.
I remember when I
was younger, he had
thyroid cancer, and
he couldn't breathe.
so he had a trach and
I'm probably eight years
old and he's putting
drops down his throat
putting the suction
down his throat so that
he can breathe just
that much better of
course I just wanted to
help him so I did I put
drops down his throat
and I helped suction
I felt like it helped
him I wanted to help him
I remember there was
a time when my dad
asked for a glass of milk
something that will
live with me forever
you want to help
someone and they ask you
when they can't
talk they put their
finger up to their
throat and they say I
couldn't understand
I had to ask him to
say it multiple
times until I finally
gave up and asked my
mom mom what is dad
saying he just wants
a glass of milk you
know being able to help
people in a way that
maybe you wish you
could in the future
it's just those little
powerful things that
live with you forever
I remember probably
a few months before
my dad passed away my
some neighbors had
asked if I could go out
and play I don't know
kick the can or something
like that and my
dad had said hey
Lindsay come here I
didn't hear him but the
neighbors got my
attention and Lindsay your
dad wants to talk to
you of course I was
impatient because my
friends wanted to play.
Mom said I could play.
So I give him a few
impatient minutes.
I go sit on Dad's
lap, and Dad says,
I just want to
tell you something
real quick, and then
you can go play.
I want you to know
how much I love you.
Take care of your mom and
your brother
and your sister.
and learn how to
play the piano
and grow out your hair.
Obviously, I
didn't do that.
But I'm working
on the piano.
Right, Mom?
After Dad passed away,
our family we really
just held each
other together we
were always there
for each other
helping each other
out my mom would
work multiple jobs
go to school to
become a therapist
and even every
once in a while
she'd want help
on homework
my brother had
baseball my sister
had dance when I
was old enough I
was able to help take
them to everything
we were a good
team and after
that part of world
I started really
embracing my
athleticism I really
enjoyed playing
basketball softball
I play travel ball
accelerated ball
even to the point where
maybe mom couldn't
go because we had
little brother and
sister at home but
hey maybe one of my
teammates and their
parents would let me
hop in the car with
them and stay in their
hotel room and I
could still go so I
really enjoyed getting
to know everybody
then I moved into
the high school world
and played softball
basketball there that's
when I really grew
to learn what it's
like to be a team and
what it's like to be
there for each other,
to be there and do
things together to
help each other out.
Then after that,
luckily I was
fortunate enough
to earn a full ride
scholarship. I
played softball,
had the time of my
life couldn't believe i
was there i even did
really well and was
named all american but
then i had to hang up
my cleats it was time
to hang up the cleats
i had had maybe one
too many orthopedic
surgeries and i had to
figure out what was next
that's when i
learned about the job
at huntsman cancer
hospital there was
a valet patient
transport position.
I really loved
medicine. I had always
kind of thought,
oh, maybe I'll be a
nurse. Maybe I'll
be a, I don't know.
So I apply for
this valet patient
transport position
and interview,
get the job.
But I was
actually a little
worried about
it. I was afraid.
What if I wouldn't
be able to handle
it? What if I
wouldn't be able
to work in the
hospital, hear the
sounds of suction,
hear the oxygen,
see the looks on families
and patients' faces,
be around cancer
all the time.
But actually, the exact
opposite happened.
What happened was I fell
in love with patient
care. I fell in love
with being around
patients. I felt like I
could closer to my dad.
It didn't scare me
away. If anything, it
just brought things
together and aligned
things. It started
to make more sense.
I remember a patient
transport. Some of my
favorite transports
were taking the patient
all the way from
Huntsman Cancer
Hospital, all the way
through the tunnels and
the bridges to the next
bridge, through the
elevator, down to
the next bridge, over
to the hospital and we
had to take a patient
to OTSS. They had
just come to radiation
oncology at Huntsman
for radiation
treatment for their
heterotopic ossification
from OTSS. Of course
I'm kind of starting
to get a little
interested in different
pieces of the medical
world at this point.
OTSS is the orthopedic
trauma surgery
floor for those
who might not know.
I loved those rides,
pushing patients
in the tunnels.
Some people
didn't like them.
They were the long ones.
You didn't get five
things done in 10
minutes. You got one
thing done in 20 minutes.
But those were my
favorite. Those
were the ones where
you could talk
to them. You could
listen to them.
You could ask them
their life story.
You didn't even
have to ask
them. They just told you.
They were still thankful.
They were in their
most vulnerable
state as a patient
in a hospital
needing help,
needing care.
They didn't, they
just wanted someone to
listen to them, someone
to be there for them.
I love being able to take
those patients
in the hallways.
I also remember
when I was a valet,
you start to notice
the patterns.
Some patients are
coming up daily, Monday
through Friday.
Some patients three
days a week. Some
patients for a full
round of chemo, and
then you won't see them
for a while, and
then they come back.
You start to recognize
the same faces.
And I remember
there was a car
that would come
up every day.
We'd call her Rowdy.
Rowdy was driving
a Subaru, and she
had a sticker on
the back window, and
it said Rowdy. So
her name's Rowdy.
rowdy would come
up to the hospital
initially more of the
smile on her face a
glow but a little
stressed but next time
she'd come up maybe
she had a little
look a little bit of
a different look on
her face a little sad
next time she came
up she was starting
to lose her hair
then I didn't see her
for a little while
and I thought I wonder
where Rowdy's at
then all of a sudden
conrad my stepdad
who actually worked
at the information
desk at huntsman
cancer hospital
he he came over
to the valet
office and he
said hey there's a
patient in level
four room three
going in a wheelchair
to see T-Scan.
We tried to make it fun.
Of course, we didn't have
phones. Now you
have a phone.
You know, this is where
you got to go
next, right?
We had so much
fun with it.
I go up to get
a wheelchair.
I go to room,
whatever room I said.
And I knock on the door.
They say, come on in. I
go in. And there's Rowdy.
I hadn't seen
her in a while.
I was a little worried.
That's when you start to
know this is
not just a job.
You love this. You are
passionate about it.
It fills your tank.
You know, of course,
I love getting to know
people. I'm a blue
personality, so for
those of you who are
into personality colors,
I really really
enjoyed being
able to have
those to be that
safe space and
to be that safe
place for patients
and visitors when
they came up to
the hospital to see
a familiar face and
someone that maybe
they've earned a
little trust with
after Huntsman I
started thinking maybe
there's some other
departments here I started
looking at the orthopedic
center, went there
to the orthopedic center
for a little while,
loved it there,
worked with orthopedic
surgeons in the operating
room, scheduling
procedures, and then
went to manage a call
center, and now I've
been in position
senior manager for the
last almost two years,
and I am over an
amazing team. I've got
330 people on my
team, two departments,
EVS, environmental
services,
and valet
service parking.
So talk about
full circle.
Now I get to
be around valet
parking and
environmental services.
To be over the valet
is really special
to me. Of course, I
know how hard they
work, and I've done
it before, back
and forth and back
and forth. They park
1,500, park and pull
1,500 cars a day
at five of our health
care facilities.
Our environmental
services team,
they clean and keep
a safe environment
at the hospitals
for our patients,
for our visitors,
for you, for me, for
all of us, for 2
million square feet.
talk about making a
difference for patients.
I think that
to be able to
feel so welcome on
such a large team
has been, I don't
know, one of
those things you
just can't describe.
But I really feel
that we've been able
to embrace our differences
and And embrace
all of the things that
bring us together,
that make us who
we are. We're more,
we have more in
common than we don't.
I've got about
28 different
languages on my team.
And something that
I have started to do
is share a special
quote. A quote that
my high school
softball coach enforced
that we learn.
Otherwise, you don't get
on the bus to the
softball tournament.
Literally.
so some of you in
the stands might know
this um i'd like to
thank my mom my wife
my family my brother
my sister i know i
have some friends
here maybe even some
colleagues with my team
here evs and ballet
thank you so much
for being here thank
you all for being
here thank you for
this opportunity for
those of you who might
know this quote if
you would I'd love
it if you would say
it with me alongside
there is no chance no
destiny no fate that
can circumvent nor
hinder nor control the
firm resolve of a
determined soul thank you
Lindsay thank you
so much for that
I have seen Lindsay
a handful of
times at the
U, and she is a
powerhouse when
she is in action.
And now I know that
she is like the
opposite of
Samson, who got his
super strength
from the long hair.
She gets her
super strength
from the glorious
short hair.
Thank you.-
Ivan Vazquez:
Our next speaker is Lindsay Thompson, and Lindsay is the support services senior manager for the University of Utah Hospital. And her lifetime supply wish is to have all the chihuahua puppies. Let's welcome her to the stage.
Lindsay Thompson:
My dad died when I was 11 years old. I remember, when I was younger, he had thyroid cancer, and he couldn't breathe, so he had a trach. And I'm probably eight years old, and he's putting drops down his throat, putting the suction down his throat, so that he can breathe just that much better. Of course, I just wanted to help him, so I did. I put drops down his throat and I helped suction. I felt like it helped him. I wanted to help him.
I remember there was a time when my dad asked for a glass of milk, something that will live with me forever. You want to help someone, and when they can't talk, they put their finger up to their throat and they say, "Get me a glass of milk," and I couldn't understand. I had to ask him to say it multiple times until I finally gave up and asked my mom, "Mom, what is Dad saying?" "He just wants a glass of milk." Being able to help people in a way that maybe you wish you could in the future, it's just those little powerful things that live with you forever.
I remember, probably a few months before my dad passed away, some neighbors had asked if I could go out and play, I don't know, kick the can or something like that. And my dad had said, "Hey, Lindsay, come here." I didn't hear him, but the neighbors got my attention and, "Lindsay, your dad wants to talk to you." Of course, I was impatient because my friends wanted to play, mom said I could play, so I give him a few impatient minutes.
I go sit on dad's lap and dad says, "I just want to tell you something real quick and then you can go play. I want you to know how much I love you. Take care of your mom and your brother and your sister, and learn how to play the piano, and grow out your hair." Obviously, I didn't do that, but I'm working on the piano, right, Mom?
After dad passed away, our family, we really just held each other together. We were always there for each other, helping each other out. My mom would work multiple jobs, go to school to become a therapist, and even every once in a while, she'd want help on homework. My brother had baseball. My sister had dance. When I was old enough, I was able to help take them to everything. We were a good team.
And after that part of the world, I started really embracing my athleticism. I really enjoyed playing basketball, softball. I played travel ball, accelerated ball, even to the point where maybe Mom couldn't go, because we had little brother and sister at home, but, hey, maybe one of my teammates and their parents would let me hop in the car with them and stay in their hotel room and I could still go. I really enjoyed getting to know everybody.
Then I moved into the high school world and played softball, basketball, there. That's when I really grew to learn what it's like to be a team and what it's like to be there for each other, to be there and do things together, to help each other out. Then, after that, luckily I was fortunate enough to earn a full ride scholarship. I played softball, had the time of my life, couldn't believe I was there. I even did really well and was named All-American, but then I had to hang up my cleats. It was time to hang up the cleats. I had had maybe one too many orthopedic surgeries and I had to figure out what was next.
That's when I learned about a job at Huntsman Cancer Hospital. There was a valet/patient transport position. I really loved medicine. I had always thought, "Oh, maybe I'll be a nurse. Maybe I'll be a ... I don't know." I applied for this valet/patient transport position, and interview, get the job, but I was actually a little worried about it. I was afraid, "What if I wouldn't be able to handle it? What if I wouldn't be able to work in the hospital, hear the sounds of suction, hear the oxygen, see the looks on families' and patients' faces, be around cancer all the time?"
But, actually, the exact opposite happened. What happened was I fell in love with patient care. I fell in love with being around patients. I felt like I could see my dad in patients. I felt like I was closer to my dad. It didn't scare me away. If anything, it just brought things together and aligned things. It started to make more sense.
I remember a patient transport ... Some of my favorite transports were taking the patient all the way from Huntsman Cancer Hospital, all the way through the tunnels and the bridges, to the next bridge, through the elevator, down to the next bridge, over to the hospital. And we had to take a patient to OTSS. They had just come to radiation oncology at Huntsman for radiation treatment for their heterotopic ossification from OTSS. Of course, I'm starting to get a little interested in different pieces of the medical world. At this point, OTSS is the orthopedic trauma surgery floor for those who might not know.
I loved those rides, pushing patients in the tunnels. Some people didn't like them. They were the long ones. You didn't get five things done in 10 minutes. You got one thing done in 20 minutes. But those were my favorite. Those were the ones where you could talk to them, you could listen to them, you could ask them their life story. You didn't even have to ask them. They just told you. They were so thankful. They were in their most vulnerable state as a patient in a hospital needing help, needing care. They just wanted someone to listen to them, someone to be there for them. I loved being able to take those patients in the hallways.
I also remember, when I was a valet, you start to notice the patterns. Some patients are coming up daily, Monday through Friday, some patients three days a week, some patients for a full round of chemo, and then you won't see them for a while, and then they come back. You start to recognize the same faces. And I remember there was a car that would come up every day. We'd call her Rowdy. Rowdy was driving a Subaru and she had a sticker on the back window and it said Rowdy, so her name's Rowdy.
Rowdy would come up to the hospital initially more with a smile on her face, a glow, but a little stressed. But next time she'd come up, maybe she had a little bit of a different look on her face, a little sad. Next time she came up, she was starting to lose her hair. Then I didn't see her for a little while, and I thought, "I wonder where Rowdy's at."
Then, all of a sudden, Conrad, my stepdad, who actually worked at the information desk at Huntsman Cancer Hospital, he came over to the valet office and he said, "Hey, there's a patient in level four, room three, going in a wheelchair to CT scan." We tried to make it fun. Of course, we didn't have phones. Now you have a phone, "This is where you got to go next." We had so much fun with it. I go up to get a wheelchair. I go to room ... whatever room I said, and I knock on the door. They say, "Come on in. "
I go in and there's Rowdy. I hadn't seen her in a while. I was a little worried. That's when you start to know this is not just a job. You love this. You are passionate about it. It fills your tank. Of course, I love getting to know people. I'm a blue personality, for those of you who are into personality colors. I really, really enjoyed being able to be that safe space and to be that safe place for patients and visitors when they came up to the hospital, to see a familiar face and someone that maybe they've earned a little trust with.
After Huntsman, I started thinking, "Ah, maybe there's some other departments here." I started looking at the orthopedic center, went there to the orthopedic center for a little while, loved it there, worked with orthopedic surgeons in the operating room scheduling procedures, and then went to manage a call center. And now I've been in a position of senior manager for the last almost two years, and I am over an amazing team. I've got 330 people on my team, two departments, EVS, environmental services, and valet service parking.
Talk about full circle. Now I get to be around valet parking and environmental services. To be over the valet is really special to me. Of course, I know how hard they work and I've done it before, back and forth and back and forth. They park and pull 1,500 cars a day at five of our healthcare facilities. Our environmental services team, they clean and keep a safe environment at the hospitals for our patients, for our visitors, for you, for me, for all of us, for two million square feet. Talk about making a difference for patients.
I think that to be able to feel so welcome on such a large team has been, I don't know, one of those things you just can't describe, but I really feel that we've been able to embrace our differences and embrace all of the things that bring us together that make us who we are. We have more in common than we don't.
I've got about 28 different languages on my team, and something that I have started to do is share a special quote, a quote that my high school softball coach enforced that we learn, otherwise you don't get on the bus to the softball tournament, literally. Some of you in the stands might know this. I'd like to thank my mom, my wife, my family, my brother, my sister. I know I have some friends here, maybe even some colleagues with my team here, EVS and valet. Thank you so much for being here. Thank you all for being here. Thank you for this opportunity.
For those of you who might know this quote, if you would, I'd love it if you would say it with me alongside: There is no chance, no destiny, no fate that can circumvent nor hinder nor control the firm resolve of a determined soul. Thank you.
Ivan Vazquez:Lindsay, thank you so much for that. I have seen Lindsay a handful of times at the U, and she is a powerhouse when she is in action. And now I know that she is the opposite of Samson, who got his super strength from the long hair. She gets her super strength from the glorious short hair. Thank you.
-
-
Transcription
Our last speakers of
the night, we actually
have a team. These
are two people whose
professional relationship
grew into a lasting
friendship, and they
are both in agreement
that they would love
a lifetime supply
of rock climbing and
adventuring together.
Let's welcome
Jessica Carey,
pharmacist and
mother, and Maddie
Graves, certified
ASL interpreter.
Thank you.
My son was born on
December 27th of 2020.
after needing
brief resuscitation
following an
emergency c-section.
The first few moments
of his life were
terrifying, but he
stabilized quickly, and
Dad did a great job
of moving back and
forth between me and
Wesley in the NICU.
The next day, I was
exhausted and
tired and sore,
and a nurse came in
and said, it's time
for Wesley's newborn
hearing screen.
after she brought
him back she let me
know that he had failed
the test she assured
me that she thought
it was the c-section
fluid build up in
his ears and everyone
at the hospital
seemed confident it
was just the fluid a
few days later we were
at his pediatric
appointment and everything
seemed normal for
a newborn shortly
after though we found
ourselves in the
dimly lit office of
an audiologist who
was running some
hearing tests on Wesley.
After she had
finished, she handed
me and dad a graph
showing the hearing
spectrum and gently
but directly,
she told us that
Wesley had profound
hearing loss, the
most severe level.
Even fireworks wouldn't
register a sound.
At most, he would just
feel the vibrations.
It's not that
I didn't love
Wesley any less.
He was perfect.
I was just overwhelmed
because communication
is the heart of who
I am, and suddenly
the way that I had
always imagined
connecting with my child
felt so out of reach.
That audiologist
tried to comfort me by
saying that if I held
him on my chest he
could feel the
vibrations from my voice.
She was just offering
something in that
moment that I could
emotionally handle
but I had always
dreamed of my child
knowing my voice
and singing to him
and being able to
say I love you in a
language that felt
most natural to me.
That audiologist
changed our
lives in another way. She
referred us to an
ENT specialist,
a geneticist, an
early intervention
specialist with
primary children.
This is a team that
is deeply experienced
with deaf children
and their families.
However,
after an MRI showed
that one of Wesley's
hearing nerves was
really small in
one ear and even
smaller in another.
Doctors told us that
Wesley was not a candidate
for cochlear implants
or hearing aids.
Neither of them
would provide
enough sound
amplification to
give Wesley a
spoken language.
I was so devastated
in that moment. I
had pinned all of
my hopes on Western
medicine giving
Wesley access to sound
so that he could
have a spoken
language, so that I
could talk to my kid.
American Sign
Language hadn't even
crossed my mind in
a meaningful way
at that point. I
had only ever known
one deaf person
in my entire life.
I will openly admit
that I was closed
off, uneducated, and
just afraid of what I
didn't know about
deaf culture and ASL.
That night in
Wesley's room,
I held him close
to my chest so
that he could
feel my vibrations
Fleeting thoughts
started coming to my mind
If I don't have
a language, how
am I supposed
to tell my kid
Look out for that car,
don't touch
that, that's hot
Or just how do I
encourage him to
do hard things or
help him in school
Or the fun stuff,
like Wesley,
look at the sky,
look at the sunset
It's pink, your
favorite color.
I knew what I
needed to do.
I needed to learn ASL.
In Utah, if a child
is born with any
different abilities
that might slow the
natural progression
or milestones of the
child, parents have
the option of working
with an early
intervention specialist.
And in our case,
a deaf mentor.
Our deaf mentor
was Jamie, one
of the most remarkable
humans I have ever met.
She herself is a deaf
individual raised
by hearing parents
and knows firsthand
the isolation that
can occur when
a language is not
shared in the home.
She walked into
my house and she
gave me something
that I hadn't
felt since his
diagnosis, hope.
she looked at me and
she signed you will
figure this out and I
believed her from then
on dad and I fully
committed to learning ASL
it was really hard to
learn the language but
also to remember to
use it using my hands
to communicate with my
son I remember I would
write sticky notes and
I'd the fridge, the
bathroom door, my door,
and Wesley's door.
The next day, I woke
up and went to go
get Wesley from his
room, and before
I opened the door,
I saw that sign,
the sticky note said,
remember to sign.
So I would practice and
say, all right, okay,
good. Good
morning, Wesley.
How are you?
I picked Wesley up. I
remember feeling this
new, beautiful way
to connect with him.
Learning ASL is not easy.
ASL is a full
language. It has
grammar, facial
expressions. You don't
just look at a kid
and say, apple.
You say, it's a
green apple. Oh, it's
sour. Do you want
applesauce? but I didn't
know the signs for
green or sour or
sauce. I only knew
apple and Wesley was six
months old. He's
growing up. His language
is progressing. I
was feeling behind.
I remember one
time I asked Jamie,
I said, how do
you sign hungry?
And she showed me,
it's like this.
I said, okay, great,
thanks, Wesley.
I signed this.
And Jamie was
like, no, no,
no, stop, stop,
stop, stop.
I'm like, what's
the problem?
Jamie said, that
sign that you're
doing, that means
*****, not hungry.
So you're telling
me, I just asked
my six-month-old,
if he's *****?
Jamie said, yes,
yes, you did.
Okay, great.
Thank you. Thanks.
It's moments like
those that keep me
laughing and keep me
feeling encouraged.
I remember the first time
that Wesley signed Mom.
That moment I will
cherish forever.
Three months later,
me and Wesley's dad
decided to find a second
opinion about cochlear
implants. And the
reason was that we
had heard there was
new data that was
showing that cochlear
implants can possibly
add some sound benefit
to people who have a
small auditory nerve.
So we met Dr. Neil
Patel, and he said maybe
there would be some
sound benefit if he
got the implant. but
the most important
thing is in the future
Wesley could decide
for himself if he wanted
to use the implants
or ASL or he could
use both and we wanted
to give Wesley all
the options to help
him figure out and
navigate the world so we
went ahead and scheduled
the appointment
on December 1st
2021 it was time
for the surgery
I remember
handing Wesley
over to the doctors
and i was feeling
regret i was nervous i i
didn't need cochlear
implants i had language
i had a way to
communicate with my kid
what happens if the
surgery causes an
infection or it doesn't
even work so we waited
for hours and finally
the surgery was done
they handed Wesley
back. He had
bandages wrapped
around his head and
it was hard to
help him not touch
the incisions and
he was in pain.
It was hard. He
was struggling.
A month later, it was
time to meet the new
audiologist who would
help us with the
cochlear implants, and
her job was to teach
us the whole world
of cochlear implants.
There's batteries. You
have to adjust
the volume.
Also, you have
to keep them on a
baby's head. That
was really hard.
Finally, it was
time to activate the
cochlear implants,
so they gave us
the cokes we put
them on his head
and she said okay
mom say something
wesley can you hear me
wesley stopped *******
his legs and he looked
up with these big
beautiful blue eyes he
didn't smile he didn't
cry he just looked and
in that moment I knew
he was hearing something
maybe not perfectly
but it was the first
time my kid had heard
my voice in some way
I felt this profound
blending of two
worlds the deaf
culture and language
that we had embraced
and now this medical
technology helping
Wesley to hear.
Wesley is a bright,
thriving five-year-old
and uses ASL perfectly
and talks a lot.
This story is not
to say that all deaf
children should have
sound amplification.
All deaf children
are different.
But all children need
language and
communication.
Wesley taught me
that health care
is not just about
medications,
surgery, or even
science alone.
It's about communication,
culture,
community, and the
courage to open our
hearts and our minds
to new ways of being.
And we can do
this together.
The end, or probably
just the beginning.
Thank you.
Jess, Maddie, thank
you so much for
teaming up to tell
us your story.-
Ivan Vazquez:
Our last speakers of the night, we actually have a team. These are two people whose professional relationship grew into a lasting friendship, and they are both in agreement that they would love a lifetime supply of rock climbing and adventuring together. Let's welcome Jessica Carey, pharmacist and mother, and Maddie Graves, certified ASL interpreter. Thank you.
Audience:
Whoo-hoo.
Jessica Carey:
Wesley, my son, was born on December 27th of 2020 after needing brief resuscitation following an emergency C-section. The first few moments of his life were terrifying, but he stabilized quickly, and dad did a great job of moving back and forth between me and Wesley in the NICU. The next day, I was exhausted and tired and sore, and a nurse came in and said, "It's time for Wesley's newborn hearing screen." After she brought him back, she let me know that he had failed the test. She assured me that she thought it was the C-section fluid buildup in his ears, and everyone at the hospital seemed confident it was just the fluid.
A few days later, we were at his pediatric appointment, and everything seemed normal for a newborn. Shortly after, though, we found ourselves in the dimly lit office of an audiologist who was running some hearing tests on Wesley. After she had finished, she handed me and dad a graph showing the hearing spectrum and gently, but directly, she told us that Wesley had profound hearing loss. The most severe level. Even fireworks wouldn't register a sound. At most, he would just feel the vibrations. It's not that I didn't love Wesley any less. He was perfect. I was just overwhelmed because communication is the heart of who I am.
And suddenly, the way that I had always imagined connecting with my child felt so out of reach. That audiologist tried to comfort me by saying that if I held him on my chest, he could feel the vibrations from my voice. She was just offering something in that moment that I could emotionally handle. But I had always dreamed of my child knowing my voice and singing to him and being able to say, "I love you," in a language that felt most natural to me. That audiologist changed our lives in another way. She referred us to an ENT specialist, a geneticist, an early intervention specialist with Primary Children's.
This is a team that is deeply experienced with deaf children and their families. However, after an MRI showed that one of Wesley's hearing nerves was really small in one ear and even smaller in another, doctors told us that Wesley was not a candidate for cochlear implants or hearing aids. Neither of them would provide enough sound amplification to give Wesley a spoken language. I was so devastated in that moment. I had pinned all of my hopes on Western medicine giving Wesley access to sound so that he could have a spoken language, so that I could talk to my kid. American Sign Language hadn't even crossed my mind in a meaningful way at that point.
I had only ever known one deaf person in my entire life. I will openly admit that I was closed off, uneducated, and just afraid of what I didn't know about deaf culture and ASL. That night in Wesley's room, I held him close to my chest so that he could feel my vibrations. Fleeting thoughts started coming to my mind. "If I don't have a language, how am I supposed to tell my kid? Look out for that car. Don't touch that. That's hot. Or just how do I encourage him to do hard things or help him in school? Or the fun stuff like, 'Wesley, look at the sky, look at the sunset. It's pink, your favorite color.'" I knew what I needed to do. I needed to learn ASL.
In Utah, if a child is born with any different abilities that might slow the natural progression or milestones of the child, parents have the option of working with an early intervention specialist. And in our case, a deaf mentor. Our deaf mentor was Jamie, one of the most remarkable humans I've ever met. She herself is a deaf individual raised by hearing parents and knows firsthand the isolation that can occur when a language is not shared in the home. She walked into my house, and she gave me something that I hadn't felt since his diagnosis. Hope. She looked at me, and she signed. "You will figure this out."
And I believed her. From then on, dad and I fully committed to learning ASL. It was really hard to learn the language, but also to remember to use it, using my hands to communicate with my son. I remember I would write sticky notes, and I'd put them all over the house on the fridge, the bathroom door, my door, and Wesley's door. The next day, I woke up and went to go get Wesley from his room. And before I opened the door, I saw that sign, the sticky note said," Remember to sign." So I would practice and say, "All right. Okay. Good morning, Wesley. How are you?" Okay. Ready? "Good morning, Wesley. How are you?" I picked Wesley up.
I remember feeling this new, beautiful way to connect with him. Learning ASL is not easy. ASL is a full language. It has grammar, facial expressions. You don't just look at a kid and say, "Apple." You say, "It's a green apple. Oh, it's sour. Do you want apple sauce?" But I didn't know the signs for green or sour or sauce. I only knew apple. And Wesley was six months old. He's growing up. His language is progressing. I was feeling behind. I remember one time I asked Jamie. I said, "How do you sign hungry?" And she showed me it's like this. I said, "Okay, great. Thanks. Wesley." I signed this, and Jamie was like, "No, no, no. Stop, stop, stop, stop." I'm like, "What's the problem?"
Jamie said, "That sign that you're doing, that means horny, not hungry." "So you're telling me I just asked my six-month-old if he's horny?" Jamie said, "Yes. Yes, you did." "Okay, great. Thank you. Thanks. Okay." It's moments like those that keep me laughing and keep me feeling encouraged. I remember the first time that Wesley signed mom. That moment I will cherish forever. A few months later, me and Wesley's dad decided to find a second opinion about cochlear implants. And the reason was that we had heard there was new data that was showing that cochlear implants can possibly add some sound benefit to people who have a small auditory nerve.
So we met Dr. Neil Patel, and he said maybe there would be some sound benefit if he got the implant, but the most important thing is in the future, Wesley could decide for himself if he wanted to use the implants or ASL, or he could use both. And we wanted to give Wesley all the options to help him figure out and navigate the world. So we went ahead and scheduled the appointment. On December 1st, 2021, it was time for the surgery. I remember handing Wesley over to the doctors, and I was feeling regret. I was nervous. I didn't need cochlear implants. I had language. I had a way to communicate with my kid. What happens if the surgery causes an infection, or it doesn't even work?
So we waited for hours, and finally the surgery was done. They handed Wesley back. He had bandages wrapped around his head, and it was hard to help him not touch the incisions, and he was in pain. It was hard. He was struggling. A month later, it was time to meet the new audiologist who would help us with the cochlear implants. And her job was to teach us the whole world of cochlear implants. There's batteries. You have to adjust the volume. Also, you have to keep them on a baby's head. That was really hard. Finally, it was time to activate the cochlear implants.
So they gave us the cochs. We put them on his head, and she said," Okay, mom, say something." "Wesley, can you hear me?" Wesley stopped kicking his legs, and he looked up with these big, beautiful blue eyes. He didn't smile. He didn't cry. He just looked. And in that moment, I knew he was hearing something. Maybe not perfectly, but it was the first time my kid had heard my voice in some way. I felt this profound blending of two worlds, the deaf culture and language that we had embraced, and now this medical technology helping Wesley to hear.
Wesley is a bright, thriving five-year-old and uses ASL perfectly and talks a lot. This story is not to say that all deaf children should have sound amplification. All deaf children are different, but all children need language and communication. Wesley taught me that healthcare is not just about medications, surgery, or even science alone. It's about communication, culture, community, and the courage to open our hearts and our minds to new ways of being. And we can do this together. The end or probably just the beginning. Thank you.
Audience:
Whoo.
Whoo.
Whoo.
Whoo.
Whoo.
Ivan Vazquez:Jess, Maddie, thank you so much for teaming up to tell us your story.
-
-
Transcription
And now, as you can
see, I don't have a
paper anymore with
notes for a reason. We
are going to have our
other storytellers
join us on stage, and
Gretchen and Megan
for a few words before
we end the night.
Thank you, Ivan.
Thank you to our
storytellers.
Sarah Kay, a
remarkable poet,
has found in her writing
workshops that when
we share personal
stories, personal truths,
there's a possibility
of four things. that
might occur one is
that we may hear the
exact same story that
we've experienced or
something similar or
we may hear the exact
opposite of what we've
experienced or we
may hear something
that we've never even
heard about like what
explain yourself tell
me more or we may
hear something that we
thought we knew about,
but now we look at it
and consider it in a
completely new way.
My guess is that at
least one of these
things has happened
to you this evening,
and my invitation
to you is to take
these experiences
with you out the door,
reflect on them. Let
them settle in and
then share them because
the stories shared
tonight are now
part of your story.
And don't try to
overthink it or try to
remember everything
that you heard this
evening. You can return
again. Remember these
stories have been
audio recorded and
they will be posted
soon on the Resiliency
Center website for
you to return anytime.
Gretchen?
So we very much do
this as a team, and I
want to just thank two
more members of our
team who are not on
stage but are somewhere.
Bethany Birch, who
has done all our
beautiful marketing,
and Betsy Holm, who
did everything else.
So I wanted to make
sure that they were
acknowledged. So
we have a tradition
of each year at
the end of the
show announcing the
theme for next year
in the hopes that
you will come and
enjoy it with us
and perhaps submit
your own story.
And even the
storytellers don't
know what the
theme is yet.
But next year's
theme is guts.
And with that, my
last note for you is
that there is a small
reception upstairs
in the gallery. if
you would like to
greet these wonderful
people and tell
them what a great
job they did tonight.
And can I have
one more round of
applause for our
amazing storytellers?
Thank you all so much
for coming. Be safe
in the snow, and we'll
see you next year.-
Ivan Vazquez:
And now, as you can see, I don't have a paper anymore with notes for a reason. We are going to have our other storytellers join us on stage and Gretchen and Megan for a few words before we end the night.
Megan Call:
Thank you, Ivan. Thank you to our storytellers. Sarah Kay, a remarkable poet, has found in her writing workshops that when we share personal stories, personal truths, there's a possibility of four things that might occur. One is that we may hear the exact same story that we've experienced or something similar. Or we may hear the exact opposite of what we've experienced. Or we may hear something that we've never even heard about like, "What? Explain yourself. Tell me more." Or we may hear something that we thought we knew about, but now we look at it and consider it in a completely new way. My guess is that at least one of these things has happened to you this evening, and my invitation to you is to take these experiences with you out the door, reflect on them, let them settle in and then share them because the stories shared tonight are now part of your story.
And don't try to overthink it or try to remember everything that you heard this evening. You can return again. Remember, these stories have been audio
recorded and they will be posted soon on the Resiliency Center website for you to return anytime. Gretchen?
Gretchen Case:So we very much do this as a team and I want to just thank two more members of our team who are not on stage, but are somewhere. Bethany Burtch, who has done all our beautiful marketing and Betsy Holm, who did everything else. So I wanted to make sure that they were acknowledged.
So we have a tradition of each year at the end of the show announcing the theme for next year in the hopes that you will come and enjoy it with us and perhaps submit your own story. And even the storytellers don't know what the theme is yet, but next year's theme is Guts! And with that, my last note for you is that there is a small reception upstairs in the gallery if you would like to greet these wonderful people and tell them what a great job they did tonight. And can I have one more round of applause for our amazing storytellers? Thank you all so much for coming. Be safe in the snow and we'll see you next year.
-
-
Transcription
Good evening.
Hi everyone, welcome.
I'm Chloe Jones, the
Executive Director of
Utah Presents and it's
my honor to introduce
Healthcare Stories,
the seventh edition.
Yeah, let's hear it,
seven years, that's
amazing. With a pandemic
thrown in there.
This is an annual
collaboration between Utah
Presents here at Kingsbury
Hall and University
of Utah's Center for
Health Ethics, Arts
and Humanities and
our Resiliency Center.
And can we just have a
moment to acknowledge
how cool it is that
we have a Resiliency
Center and a Center
for Health, Ethics,
Arts, and Humanities
on this campus?
Health Care Stories
is one event in a
whole season of
cultural and community
programming at
Utah Presents. We
have lots going on
this month alone, and
we would love for
you to come back.
Next week, we premiere
an original theater
piece in partnership
with Plan B Theater.
It's called Kill
-A-Watt, and it
tells the story
of Wat Masaka.
If you don't know
who Wat Masaka
is, he has a
remarkable story.
And the experience
will be quite unique.
You'll actually enter
through the backstage
door here at Kingsbury
Hall and you'll
sit up on the stage
for the whole show.
The week of President's
Day, we welcome
back another annual
favorite, the
Banff Mountain Film
Festival World Tour.
And that Saturday,
we close our
new series, Jazz
at Kingsbury Hall,
with Christian
McBride, an eight
-time Grammy Award
-winning bassist.
And that's not all we
have going on
in February.
At the end of the
month, we bring
Hubbard Street Dance
Chicago. They're one
of this country's,
if not this world's,
most celebrated
dance companies,
and they will wow
you whether you think
of yourself as a
dance lover or not.
All of this
programming, including
tonight, is made
possible by the
generosity of our
donors. I want
to thank our
seasoned sponsors,
Gordon and Connie Hanks,
Lee and Audrey Holler,
Dan John, Kenworth Sales,
Nancy Peary Marriott,
Tom and Mary McCarthy,
the Newman Family
Foundation,
Dinesh and Kalpana Patel,
John and Marcia Price
Foundation, Sally Schatz,
Alice and Kevin
Steiner, Kyle
Treadway, and
Greg Pedroza,
Salt Lake County
Zoo Arts and Parks,
Salt Lake City Arts
Council, and Hampton
Inn and Suites. We
are so fortunate
to have this
foundation of support.
There's no
intermission tonight.
You can access a full
playbill by scanning
the QR code on the
performance card you
picked up on your way
in, and if you didn't
get one, you can grab
one on your way out.
Do take a moment,
please, to make sure that
your cell phones and
other devices are
on silent or turned
off. Dim your screens.
It's really important
to us tonight
that there not be
any photography
or videography
during the show.
And in the event of
an emergency, exit
the way you came in
and listen to the
instructions from
our wonderful ushers.
Now, I get to introduce
an amazing colleague
and dear friend,
Dr. Gretchen Case.
Dr. Gretchen Case is
director of the Center
for Health Ethics,
Arts, and Humanities and
an associate professor
in the Department
of Theater and the
Department of Internal
Medicine here at the
University of Utah. Dr.
Case works in the
health humanities, the
many ways in which the
arts and humanities
intersect with the
medical arts and sciences.
She is an inspiration,
a force to be
reckoned with, someone
we are so fortunate
to have on this
campus and in town.
Please put your
hands together
for Dr. Gretchen Case.
Thank you all.
Joy is the intoxicating
beauty of the world.
This definition of joy
comes from the poet
David white's first
book, Consolations.
If you've come to
the show before, you
know that I'm usually
standing here with
Megan Call, the other
producer of this
show, and she loves
David white's poetry.
She often quotes
from it. She asked me
to quote from him
tonight, and the only
reason she's not here
is because she got
invited to a retreat
with David White.
So we excused her
to go be at that
retreat, so she
won't be here
tonight. She's
with us in spirit.
We've been producing
Healthcare Stories
since 2017, always
with Utah Presents,
always on this stage
at Kingsbury Hall,
and early on with the
support of The Bee,
that many of you
may know, and Brooke
Horsch, and so many
other wonderful people
like you who know
the power of stories.
Each year, we select
stories that are
amazing. They come
from the submissions
that we get and
the invitations
that we extend, and
what we're trying
to do is gather the
voices and experiences
of our community
around a theme.
These are not
lectures, they're
not TED Talks,
it's not a story
slam, it's not
a competition.
Instead, what we've
built is a community,
and we've built that
with all of you.
We hold these
evenings not only to
hear stories about
health and health care
and being human,
but also to consider
how we might tell
our own stories.
Joy is the
theme this year,
and we always
need more joy.
And we know from
science and from many
wisdom traditions that
joy is good for us.
We need joy when things
are going well, and
we need joy when things
aren't going well.
There are a bunch
of people I need to
acknowledge and we
want to thank tonight.
There are many special
people who made this
possible in addition
to the Resiliency
Center, Center for
Health, Ethics, Arts, and
Humanities, and Utah
Presents. We want to
especially thank the
crew, Chloe Jones, Asia
Vogelman, David
Braithwaite, Ashley
Behunen, Dennis Bush,
Sherry Jarden, and all
the marvelous stage crew
and box office staff.
Also, everyone from
UHealth who's been
so supportive, especially
Wendy Hobson-Rohr,
Tom Miller, Amy Locke,
and Michael Good.
The marketing and
communications team
from UHealth and the
one from main campus
went above and
beyond this year in
getting word out about
healthcare stories.
Betsy Holm and Bethany
Burr are sitting
somewhere over there,
and they're a really
important part of the
team that actually make
everything happen
and get the word out.
And finally, I want
to make sure to thank
our storytellers,
not just this year's
storytellers, but so
many of you who've
told stories in the
past and are here
with your family
and your loved ones.
We have six
stories tonight.
They've each been
asked to stay around
10 minutes. We'll
see what they do.
And for the past
few years, we've had
the tradition of
inviting a past
storyteller to come and
be the emcee for the
evening. So we're
really lucky to have
Kati Yaud, who told
a story in 2023.
She works here at the
U, but she's about
to leave and do her
graduate work at
the London School for
Economics. So we're
very lucky to have
the distinguished
Kati Yaud here. So,
Kati, let's begin.
Thank you so much,
Dr. Case and the
rest of the Healthcare
Stories team.
Good evening,
everyone. My name is
Kati Del Pilar
Yaud, and I am so
honored to be your
emcee tonight.
Honestly, when they
asked me last fall, I
was in the middle of
graduate school applications,
and I'm like I don't
know some programs
start in the winter
but you know it's okay
I will make it work
I will be there no
matter what I had the
wonderful opportunity as
it was stated to come
on this stage in 2023
and tell my own story
I had the opportunity
to talk about my
autoimmune disease
dermatomyositis and my
journey to remission to
relearn how to chew
swallow and eat again and
to learn to walk and
eventually jog and run.
I'm currently
actually training
for a marathon in April.
So I'm very
excited about that.
Have I become one
of those people
that like to run
and don't actually
ever stop talking
about running?
Yes, and I will not
apologize for that.
Healthcare stories is
just so special to me.
You will laugh with these
wonderful storytellers
tonight. You will
cry with them. you
will feel with them and
for them and honestly
there's there's nothing
like it and i do
want to applaud them
for their bravery
because i know for some
i know for me it was
definitely out of my
element because it's a
completely different
experience here i will
also say i'm not a
big fan of small talk
okay so when i mean
it's good to know what
you do for work and
how many kids you have
or if you don't have
any kids totally fine
but what I really want
to know is if you pour
your cereal or your
milk first or what
your phobias are or
what like pizza toppings
you choose though
that's what's really
important to me so in
addition to your digital
programs that you have
I will I had asked
them to give me more
information so these
two questions are in
your worst mood what is
the Disney villain
that you most resemble?
The second question
is what is your most
controversial mundane
opinion? Okay.-
Intro & Welcome to Healthcare Stories: Joy
-
-
Transcription
Our next storyteller
is Amy Askerlund,
and she chose
the controversial
mundane opinion, and
she said that she
wishes Elf on the
Shelf never existed.
And I agree.
Here's Amy.
Hello.
Wow, what an
extraordinary night. I am
so honored to be here
sharing my story.
I knew I would
get emotional.
Every time I think
about my story,
my emotions
kind of well up.
I'm really an
ordinary person.
I'm a mom. I'm a nurse.
But I recently had
the opportunity to
participate in something
very extraordinary.
Just four months
ago, I became a
living kidney
donor, and I donated
my left kidney to
a total stranger.
And this is one
of the most joyous
things I've ever
been able to do. And
I'm so excited to
tell you about it as
soon as I can get
it under control.
usually when I tell
people that I did that
they have a lot of
questions and the first
question is usually
why what made you want
to do that well as a
nurse of course I've
always been aware of
kidney disease and what
it means to the patient
and their family I
would see them come
into the ER if they had
missed their dialysis
appointment and I really
started to think about
how difficult that
would be to have to
go to dialysis several
times a week for hours
at a time. I mean,
you're really tethered
to that machine. And
even though it keeps
you alive, it really
limits the amount of
living that you can do.
And so then one day
I was listening to a
podcast, as I often
do. I'm a big podcast
listener. And on this
episode, the guest
was telling about
his experience of
donating his kidney.
And as I listened, I
thought, huh, that
doesn't seem that hard.
That doesn't sound like
that big of a deal.
I wonder if I could do
that. I think I could
do that. I mean, I
know it's a big deal,
but like it's not that
big of a deal. So I
thought, okay, maybe
someday I'll look into
that. Well, a few
months went by and I got
a text from a friend
of mine. We used to
work together, but she
now happens to work in
transplant services.
So I thought, oh, I
should ask her, how
would one go about it if
they were curious and
interested in becoming
a donor and she sent
me a link and I opened
it up and I read all
the information that
I could find and then
there was a button
at the bottom of the
page that said become a
living donor and I
clicked on it and I took
the first step which
was just to fill out
a very extensive
medical history form I
submitted that and that
got the ball rolling
the next thing I had
to do was to make sure
that all of my regularly
recommended cancer
screenings were up to
date so luckily I had
just had an appointment
with my OBGYN so
all I had to do was
schedule my first ever
colonoscopy I remember
this was I was doing
the prep for it on Super
Bowl Sunday because
yes as you can imagine
everyone else was
enjoying their seven
layer dip and their wings
and their pizza and
I had my gallon of
bright yellow Gatorade
chuck full of Miralax.
But then I had a
great little power
nap the next day,
so it was great.
After all my results
came back clear, it
was time to schedule
an appointment with the
transplant center.
So they schedule an
all-day appointment.
You get there first
thing in the morning at
8 o'clock, and you're
there until about 3
.30 in the afternoon.
Now before my appointment,
they had mailed
me a great big red jug.
And they said, we want
you to collect all
your urine in a 24-hour
period and bring it in
with you. And also it
needed to be refrigerated.
So I thought, I
don't think my family's
going to appreciate
having a big jug of my
urine in the fridge.
So I kept it in a cooler
in my bathroom. And
then I don't know about
you guys, but I don't
know what the proper
etiquette is for
walking in public with
a jug of your own urine.
So I just had to go
against all of my
social conditioning
up until that point
in my life and just
confidently strut
in and hand over
that jug of urine.
And if you can
believe it, you know
what they wanted
first? A urine sample.
I'm telling you,
these nephrologists,
they are obsessed
with pee.
So then it was time to
get the testing underway.
The first thing
was to draw
blood, and they
drew 27 tubes of
blood to be
exact. I counted.
After that, I had
a chest x-ray and
an EKG and a CT
scan, and then I
had a series of one
-on-one appointments.
I met with a
nurse coordinator,
a nephrologist, a
transplant surgeon,
a dietician, a
pharmacist, and a social
worker, and the social
worker had a lot of
interesting questions
for me but one question
he asked me is do you
want to become famous
and I said oh my
goodness no I am not the
type of person to stand
on a giant stage under
a bright spotlight
and talk about myself
so after all of my
testing came back good
the nurse coordinator
presented my case to the
transplant board, and
about a week after
my appointment, I got
the phone call, and
they had accepted and
approved me to be a
kidney donor, and it
had felt like the most
intense job interview
process of my entire life,
and they were offering
me the position
to be a living kidney
donor. I was super
excited, and I said, okay,
great, so what's next?
We just have to wait
until you find to
match, and she kind of
chuckled, and she said,
oh, that's not going
to be a problem. You
just tell us when
you want to schedule
surgery, and we will
have a recipient for you.
So this was in the
springtime, and I had
three kids graduating
that fall, or that
summer, and then we had
a big summer vacation
planned, and then I
wanted to get my kids
settled back into their
next year of school
before scheduling
surgery so I said why
don't we shoot for like
early October and she
said October 1st it
is so a summer flew
by as it always does
and the day finally
arrived the night before
the surgery I could
not sleep a week I
was just laying wide
awake in my bed all these
thoughts going through
my mind and I started
to think about
the recipient and I
wondered if they were
feeling how I was
feeling that night. Were
they not getting any
sleep? Were they feeling
excited and a little
nervous and finding
it hard to believe that
this day had finally
arrived? I wondered
how long had they
been waiting for this
day to finally arrive.
And then I started
thinking about the
health care team
that would be taking
care of me the next
day. And I thought
about how, for me, this
is literally a once
-in-a-lifetime
thing. But for them,
they do this every
time they go to work.
And so morning
finally came. My
husband and I
arrived at the
hospital at 5.30
in the morning.
And by 7.30, I was
on the OR table, and
they were getting
me all connected to
the equipment. I
could see on the big
screen all my vital
signs were displayed,
and I could hear the
beeping of my EKG.
I could hear the
scrub techs counting
instruments off to the
side. And I had my nurse
here on my right side.
She was holding my
hand. the surgeon was
here at the left and the
anesthesiologist was
at my head and he said
all right it's nap
time and I said wait
before you put me to
sleep and you guys I had
had I had prepared the
most amazing speech
in my head I had so
many profound things
like it would have
brought you to tears if I
would have shared that
speech but all I could
eke out was I just
want to say thank you.
And then finally, after
a sleepless night,
I was out. So by nine
o'clock, little Lefty
Lou, that's what I
call my left kidney,
she was all packaged
up and she was about to
catch a flight
headed for Nashville,
Tennessee. So we had
arranged a swap so somebody
at Vanderbilt would
get my kidney and then
they would ship a
kidney here for someone
local. And I imagine
once Lefty Lou got all
installed in her new
owner, she had a good
look around and thought,
whoa, oh my gosh,
who has been running
this show around here?
This will never do.
And she kicked it
right into gear and got
busy filtering away.
Meanwhile, back here
in Utah, me and Gary
Glomeruli, that's my
right kidney, am the true
hero of the story, I
must say. I imagine
that he woke up and
was clocking in for his
day of work and noticed
pretty quickly that
things were backing up
and I am so proud of
him he had to adapt
and adjust to his new
life as a single man
and he is doing it you
guys he I'm so proud
of him yes so I only
spent one night in the
hospital I was able to
get up and walk to the
bathroom right away
and then I would just
kind of increase my
distance until I could
walk all the way around
the unit. And when
I got home, I would
kind of walk in circles
around my yard and
then around my block and
kind of increase that
distance gradually.
And within two weeks,
I was back in the gym
and back coaching my
fitness class. And
within about four weeks,
I was back to work
full time. And really,
other than this really
cool scar, life is
totally back to normal.
You would never know.
So another question
that people
usually ask me is,
who's your recipient?
What do you
know about them?
And the answer is,
I don't know. So we
both get to decide
what information we
want to share with
each other. And I did
send a letter in the
box with Lefty Lou,
but I haven't heard
anything back. And
that's okay, because
I know that they're
going through their
own complicated health
care journey and
making decisions that
are best for them.
But even though I
may never connect
with my recipient, so
many people have told
me about their loved
one who received a
kidney transplant.
So I get to hear so
many stories of joy.
So the story
of Little Lefty
Lou and Gary is
really a small
part of a much
bigger story.
back in between 2019
and 2022 I was the
manager of an
emergency department
and you guys might
recognize this as the
COVID era and this
was a very challenging
and trying time
for everyone but
for those of us in
health care it really
changed everything
and it changed us
Patients would come
to us afraid and angry
and distrustful and
alone and scared.
We watched our coworkers
leave one by one.
We had to wear protective
equipment for 12
or more hours at a
time. There were no
more smiles, no more
hugs, no more potlucks.
Everything that we
used to find joy in in
our jobs, it was rapidly
diminishing. and it
was being replaced by
things like burnout,
moral injury,
and caregiver
fatigue. So we
had to figure out
how to feel
that joy again.
One of my personal
heroes is Mr. Rogers,
and he famously said,
when you see scary things
happening in the
world, look for the
helpers. You will always
find people helping.
Well, we got to be
the helpers. when
patients had to come
into the hospital
all alone we got
to be the ones at
the bedside offering
them hope and
comfort and giving
them a hand to hold
even though we couldn't
single-handedly
end the pandemic we
could hold a single hand
and that is where we
found our joy again
I couldn't clear the
waiting list of 100
,000 people in the
United States waiting
for kidneys every
year, but I could make
an immeasurable impact
in the life of one.
Amy
calls herself an ordinary
person, but I really
don't think an ordinary
person would donate
a kidney. And as
someone whose father is
currently going through
dialysis, thank you
so much, Amy, from the
bottom of my heart.-
Amy Askerlund
-
-
Transcription
Our last but not
least storyteller
for tonight is
Donna Bellucci, and
the Disney villain
that she most
resembles is Yzma
from The Emperor's
New Groove, which
I find hysterical.
Here's Donna.
Good evening, everyone.
Tonight, I would
like to commemorate,
honor, and thank
some of our unknown
co-workers, the
people whose
remains are used in
medical education.
In particular,
I want to tell
you about the
human bones at the
Eccles Health
Sciences Library.
That's where I work.
I'm a medical librarian.
And like most
libraries, we
have educational
materials.
And in the
health sciences,
sometimes there's bones.
When I started in 2016,
I loved seeing those
bones every day. It
was kind of thrilling,
because a bone
is never just
an artifact or an object.
It's a person.
Then, in 2021, my work
bestie, Carmen Smoot,
forwarded me an online
seminar that she knew
I'd be interested
in. It was presented
by Dr. Asia Lanz at
Harvard, and it was titled
Uncovering the Roots
of Racism, a Practice
in Reading Against
the Archival Grain.
Dr. Lanz began the
presentation by discussing
her dissertation in
which she had been
able to identify
some of the bones in
Harvard's archives as
having been people who
were enslaved at the
time of their death.
While I was reeling
from the horrors of Dr.
Lanz's discovery I
looked past my laptop
screen and I locked eyes
with seven skulls and
for the first time I
asked them who are you
I really needed to
answer that question
and in my worry I
ran to my colleague
Heidi Greenberg who
had done historical
research at the
University of Utah
and I said Heidi who
is in our library
and she said I don't
know they came from
the collections
librarian so I ran to the
collections librarian
Christy Jervis and I
said Christy who's in
our library and she
said I don't know they
came from the anatomy
department so I
looked up the anatomy
department and I figured
maybe the body donor
program would be a
good place to start so
I emailed the manager
Kerry Peterson and I
wrote Mr. Peterson,
who is in our library.
And he wrote
me back, and he
said, it's a bit
much to type.
A phone call would be
easier. You
got 10 minutes.
Carrie Peterson
is one of the most
caring and kind people
I have ever met.
And I know that
because he let me keep
him on the phone
for over an hour.
It's what
started my entire
journey of discovery.
So many of you have
probably heard stories
about grave robbing
during the Victorian
era, and some of you
may know about the
turn-of-the- century
practice of unclaimed
bodies making their
way to cadaver labs,
but you might not
know that from the mid
-century to the 1980s,
medical schools
actually purchased some
of their remains from
medical supply
companies. The University
of Utah bought theirs
from a company in
Vancouver, and
those medical supply
companies, they got
their remains from India.
That's because
India was the only
country where family
members could legally
sell their loved ones
after they passed
to these medical
supply companies.
In 1984,
a skull cost
$80 and could
be bought by the dozen.
And I don't know
what fraction
of that amount
actually made
its way back to
the families.
In 1985, it was outlawed.
Putting a financial
incentive on
death had ultimately
resulted in some
really terrible
human behavior.
There was theft,
exploitation,
grave robbing,
suicides, and what you're
all thinking, murder.
Carrie Peterson
reassured me that all
of the bones at
the Eccles Health
Sciences Library were
from India, people
who had likely
died in the 1970s.
I say reassured
because that's
not where the story ends.
in the 90s and then into
early 2000s a mystery
supply of bones
started to show up at
those medical supply
companies and though they
would receive an
entire skeleton it was
very clear that the
bones were not all from
the same person and after
all of my conversations
and research both
myself and many others
have come to believe
that those bones are
likely from the
cambodian killing fields.
For those that don't
know, in the late 70s,
Pol Pot's brutal
dictatorship led a
genocide that murdered
1.3 million people, and
their bodies were
left in over 20,000
mass graves that you
can still visit today.
By the 90s, those
bodies had decomposed,
and so now people
were gathering up
those bones and they
were selling them.
When you encounter
bones for sale online
or in so-called
haunted museums or in
like oddity stores
or as Carrie Peterson
so charmingly called
them, spook alleys,
they're all from
that later supply.
So at this point
I got a terrible
reckoning to make and
I went to my library
colleagues, and
we decided that it
was time to lay
those bones to rest.
We gathered them up,
and we returned them
to the anatomy
department, where they
were cremated alongside
that year's cadavers,
and those ashes
were placed at the
memorial in the Salt
Lake City Cemetery.
After some ethical
deliberations
between a lot of us
over many departments,
we decided to keep
one skeleton made
up of several
individuals so that
they can teach the
lessons that aren't
included in the
anatomy curriculum.
Lessons like
consent after death,
the cost of the
pursuit of knowledge,
the long-lasting
casualties of war,
existentialism,
empathy, our own
mortality, and
the impact we can
have even long
after we're gone.
Now you may be
asking yourselves,
how in the **** is she
going to bring
this back to joy?
well doing right by
others even those
long dead brings me
immense joy and now
when any of you
encounter human bones
whether in viral videos
online or in spook
alleys you'll know who
they are and you'll
get to share their
story too because
a more just world
is a more joyous one
and really what
are all human bones
but our future selves
thank you thank
you donna
justice is truly
joyous I'll see
you next time.-
Donna Baluchi
-
-
Transcription
Our next
storyteller is Emily
Erickson, and she
chose a Disney
villain that she
most resembles,
but she actually
chose Miss
Trunchbull from Matilda.
In her family,
she says that they
always joke about
how all things
are much too good
for children.
Just pretend
I said that in
my best Miss
Trunchbull voice.
Here is Emily. How
I regret that I
told her that.
sometimes i feel
like matilda too um
i'm so excited to
be here with all of
you tonight and it
really helps that
i can see none of
you i just see this
bright spotlight
shining in my eyes
um when i first got
the email about the
health care stories
event and um that the
topic was going to be
what brings you joy
in health care i knew
i wanted to make a
submission my family
loves the Moth Radio
Hour podcasts. I'm
very familiar with the
format. But as I was
thinking about what
brings me joy in health
care, I immediately
started to think of
so many experiences
I've had with patients
over the years.
I want to tell you
about one of those
patients. I'm going
to call him Kay.
And when I met Kay,
the first time I
met him, we talked a
little bit about his
career, a little bit
about his hobbies
as we got to know
each other before we
got started into
his medical history.
And each visit, I'd
check in with him,
you know, how's
your family doing?
What new adventures are
you going on traveling?
And we just had
a really nice
relationship that
developed over
the time that I
took care of him.
And at the end of one
visit, he said, can I
show you something? And
he got a little, his
face got a little
excited. And I said, sure.
and he pulls out his
phone and he shows me
a video and it's him
out on a golf course
on a beautiful sunny
day and he's wearing
Bermuda shorts and just
looking very relaxed
and he the video is of
him sinking a putt from
over 20 feet away and
it's a putt for birdie
and if you're a
golfer you know that a
birdie putt is like
awesome and he was so
excited about it and we
just shared that moment
together and it wasn't
until I we finished
the visit and I was
speaking with our social
worker who was in the
room and she said you
know what I was watching
him while he was
watching you watch his
video and he was so
excited to show that to
you and it really made
him happy and had you
only glimpsed that
small little moment of
us sharing that time
watching his his video
of his golf you would
have just thought oh
that's a nice you know
that was a nice moment
they had but when you
put it in the bigger
context of the visit
when we had been talking
about some pretty
heavy things about his
deteriorating health and
the need to get started
with hospice care
for me it put it
into perspective that
we could have this
type of conversation
and still end on
such a positive
experience together.
And as I was thinking
about this patient,
I realized that
that truly is my joy
in health care. It's
making connections.
You know, I've been
an oncology nurse and
nurse practitioner
for over 20 years, and
it's tough and it's
hard, but it's really
wonderful. And usually
when I meet people
and we're exchanging
pleasantries,
what do you do for
a living? And I tell
people that I'm
an oncology nurse
practitioner their
face gets a little
like and they're
like oh I'm sorry
that must be really hard
and I just tell them
I love it I love taking
the complexity of
medicine and you know
the beautiful lives
people have and blending
them together and
figuring out you know
a way to move forward
and I used to tell
people that you know I
love my job but if I
had to be a first grade
teacher I would like
poke my eyes out with a
pencil but then I
accidentally said it to
an actual first grade
teacher so I do not say
that anymore but I
love being a nurse
practitioner I love
talking with patients when
I was a brand new nurse
on a night shift a
patient had all these
questions and I was
like oh you want me to
answer those questions
so we I sat down and
had a really nice
conversation and we talked
about the health and
the medicine side of
it but we also talked
about some of his goals
for the future and
I didn't think anything
of it and went on my
way and the next day
he told me that our
conversation really
helped to clarify some
things for him and
helped him make some good
decisions moving
forward and that was the
first time I thought
hey I'm good at this and
ever since then I have
always tried to find
out something about my
patient and it could
be something very simple
how many kids they
have or grandkids what
are they doing for
the holidays I had a
patient tell me back
in the fall how excited
she was to dress up
with her grandchildren
who are into furries
if you know what that
is and she was dressing
up as an aardvark
and I was like how do
you do that costume and
then just recently I
had a patient tell me
that she just casually
mentioned that she had
lived in the Arctic,
and I said to her at
the end of the visit,
we had a couple minutes
left, I said, let's
circle back to that.
Why were you in the
Arctic? And she told
me this really great
experience she had
working as a healthcare
professional in the
North Pole for two years.
It was just amazing,
and I realized that
as I try and have
these moments with
patients we're trying
to forget for a moment
where we're at and that
you're not a person
with a disease
you're just a human
being and we're just
having this connection
and as I was preparing
for this this talk
the story tonight I
found a theoretical
framework a scientific
framework which if
you're in like medicine
and a scientist you
get really nerdy about
scientific frameworks
and the work of
Barbara Fredrickson she
calls it micro moments
of positivity and
these are moments of
connection where you feel
love and that love
strengthens the connection
between your brain
and your heart and
makes you healthier
and I loved that yes
micro moments of
positivity. That's great.
When, as Amy was
talking about earlier,
the COVID pandemic and
being in health care
in general is just
sometimes tricky and
there's a lot of burnout
and people leave.
And I realized that
these connections, these
micro moments, that
is what brings me
so much joy. And that
helps me stay in health
care and keep doing
the work that I do.
I have one more story
I want to tell you.
And this was a very big
surprise story for me.
Last fall, I was busy,
extra busy,
covering a couple of
extra clinics for
some colleagues
who were on
maternity leave.
And I didn't know the
patient panel well.
And I was just
getting ready to go
into a patient's
room. I'd had about 10
minutes to prepare
ahead of time. So I
just knew about her
illness and what her
current treatment was,
and that was about it.
And I walked in
and sat down, and
through the course
of our visit, we
started talking
about her symptoms.
And I asked her,
how is your fatigue
doing? And she said,
oh, it's getting
better. I'm starting
to bake again. And
I was like, oh,
what are you baking?
She says, I'm making
cinnamon rolls, and
I'm selling them at
a farmer's market.
And so I was like,
here's my question.
What farmer's
market? And she
says, oh, the one
in Hurricane, Utah.
And I said, oh, my
grandma lived in
Hurricane for many
years. Well, that got her
interested. So
then she asked me a
question. And she says,
what was her name?
And I said, her
name is Verna S.
And she said, Verna S.
taught me how to crochet.
And we were very good
friends for many years.
And I really miss her.
Grandma Verna
lived to be almost
100 and died a
few years ago,
and I really
missed her too.
And so suddenly here
we are sitting in
the office, tears
running down our faces.
My nurse in the corner is
like, what just happened?
But we left that visit
with smiles on our faces.
In a world that we're
living in today, where
divisions are all
around us, we each
need to deliberately
and intentionally find
ways to connect with
our communities, with
our neighbors, and
the patients we serve.
And who knows, maybe
your connection will
start with a simple
question that will lead
you to your own micro
moment of positivity.
Thank you. I
was telling Emily
backstage that she
is the type of hype
person, you know,
you're a hype
woman that I would
definitely want in
my corner. So thank
you so much, Emily,
for your story.-
Emily Erickson
-
-
Transcription
All right, our
next storyteller
is Patrick O'Gursey.
Now, I'm going to admit
something to you all.
I didn't think
he existed.
I have a reason for
this. Let's go back.
I have kind of a
calendar of events, OK?
So like two
weeks ago, I meet
with Dr. Gretchen
Case to kind
of go over the
event tonight.
And she said, well,
I haven't rehearsed
with Patrick
yet. And I said,
OK, we'll just meet
him at rehearsal.
And then Monday comes
around, and he doesn't
show up. And they
said, oh, because he
actually commutes to
New Mexico. They said,
okay, all right.
And then we were
all supposed to
come here at 5
o'clock for a
sound check, and
he wasn't here.
And Dr. Case looks
at her phone, and
she says, it's like
520 at this point.
And she says, oh,
he's late, and he's
coming. and I'm like
sure yeah if you believe
it I believe it I
will say that he does
exist and he chose
the question of the
Disney villain that
he most resembles well
actually it was his
daughter who chose
it is Tomotoa from
Moana and her reasoning
was is that if one
if you were to become
a villain it would
be a goofy singing
villain so there you
go here's Patrick I
do exist.
All right.
Hello. Thank you.
I'm going to talk
about the sneaky nature
of joy because I
think joy is sneaky.
I think often we
think joy comes from
these big moments
like a new bike or a
promotion or a perfect
vacation, and it
absolutely can come
from those moments.
but more often I think
it comes from seemingly
random places have
you ever put on like a
jacket you haven't
worn in a long time and
then you stick your
hand in the pocket and
you find that secret
snack that you left you're
like whoa a granola
bar or maybe you're
like driving and that
one song comes on you
just have to like turn
it up full volume next
thing you know you're
singing into the steering
wheel, you're like,
I want it that way.
It's a good song.
It's because those
small moments hidden
in it is joy. And
when nurtured, it can
turn into this more
lasting sense of joy.
Last year, I bought
a fart machine,
like one of those
little speakers
that you can
like slip into a
pocket and push a
button, you know.
I bought it so I
could use it while I
was working in the
emergency department.
Never with patients and
only on myself,
of course.
I used it when
I was talking to
medical students
or residents or
nurses or pretty
much everyone else.
It took two months
before somebody finally
acknowledged the
noises I was making.
I got a lot of, like,
awkward, avoiding eye
contact and nervous,
suppressed laughter.
Finally, someone
said, hey, do
you need to
check yourself in
and get, like,
a GI consult?
I can only imagine
the rumors that were
floating around
about my GI distress.
And for me,
it wasn't just
about, like,
having a laugh.
For me, it was
about showing that
even in a tough
environment, joy
can come from an
unexpected place.
So joy can be sneaky
in another way, too.
and that's when it
disappears unnoticed.
So during the pandemic,
I burned out hard.
I think the
pandemic was tough
for everyone,
but for an ER
doctor, it was
particularly rough.
The fear and anxiety
and anger all
built up in me and
before long, I was
dealing with full
-blown depression.
It manifests as like
being awake at three
in the morning, glued
to my phone, not really
caring what I was
watching. I'd be like,
oh, a documentary
about competitive
chicken racing. I
got to watch that.
And then I'd just
be doom scrolling.
And before long,
I found I didn't
care much about
anything anymore.
Those bitter roads
became highways.
And I became a magnet for
negativity and was
able to tune out all
the positive
things in my life.
At work, I was just
kind of phoning it in.
You know, I might be
like, on a scale of one
to ten, tell me how
bad your pain is, sir.
Seven?
Yeah, we'll see.
It was not the
most compassionate
care I've ever delivered.
While I was going
through all that,
I actually remember a
shift, a moment when
things started to
change for the better.
I had a patient who
came in by ambulance.
He was about my
age, and he came
in talking, but
quickly deteriorated.
Unfortunately, we
couldn't save him,
and his wife watched
from the corner
of a trauma bay
in silence as a
team of doctors,
nurses, and support
staff worked hard
to try to fix him.
at some point i
realized there wasn't
anything more we
could do for him we
couldn't help him
anymore but we could
help her we brought
her into the
conversation which
is standard practice
and when everyone
agreed we withdrew
care we had a moment
of silence for him
for her and for the
efforts of our team
and then we left
her to grieve
privately at the
end of my shift
i circled back
to that room
and i found her
still sitting
there by his
side not wanting
to leave not
wanting to let go
and so i sat with
her and we talked and
she told me who he
was he's a father
a husband and a
friend And she told me
that she didn't
know how to go home
and tell their
daughter what happened.
I sat for the better
part of an hour
with this
complete stranger,
connected in the
midst of her tragedy.
And didn't realize
at the time that
it was actually
healing for me too.
a year later on the
anniversary of that
day she sent food to
our department which
is always appreciated
on a busy shift and
she sent a letter and
in that letter she
thanked me for sitting
with her she thanked
me even though we
couldn't save him I
never would have
thought a case like
that would have
left me satisfied
with my efforts,
but somehow it did.
It showed me that even
in the face of a tragedy,
we could help her
in some small way.
I think joy is the
happiness that doesn't
depend on what's
happening around you.
I think sometimes
you have to squint
really hard to see
that silver lining,
And sometimes it's
really only visible
in the rearview
mirror, but it's there.
And then I started
seeing more of it.
Like recently,
I was cooking
dinner for my 11
-year-old after
a late night
soccer practice.
It was a healthy meal
of ramen noodles.
And the two of
us stood there in
the kitchen
watching this pot of
water, waiting
for it to boil.
And it turns out,
eventually it does.
And as we watched, we
noticed the bubbles
forming on the
bottom of the pot and
kind of gathering,
coalescing, dancing.
And we got into
this deeply nerdy
conversation
about the science
behind liquid
turning into a gas.
And burned out
me probably would
have missed out
on that. If I'm
being honest,
before the burnout,
before the pandemic,
before all of it,
I might have missed
it then, too. I
missed out on that
tiny, insignificant, yet
absolutely beautiful
moment together.
I think the best joy
happens unexpectedly.
For me, it took
the tragedy of a
pandemic to realize
that life is not
always pink starburst
all the time.
Sometimes you get
a red one, and you
have to decide if
you can manage.
Red is the worst flavor.
Anyone who says
differently is wrong.
It goes pink,
yellow, orange, red.
Sorry.
Joy is unexpected.
And it can hide in
those bubbles before
the boil or the
snack in your
pocket or the unexpected
****** sounds.
Or maybe that song you
just have to belt out.
Or the silence of
connecting with
someone in a
challenging moment.
I think sometimes
you've got to slow down,
or maybe you
have to open your
eyes, or maybe
you have to squint
really hard. But
however you do it,
if you look for
it, really look,
joy can surprise you too.
Thank you, Patrick.
I really resonated with
that, the unexpected joy.-
Patrick Ockerse
-
-
Transcription
Without further ado, I do
want to introduce
Phil George.
Now, as you were
coming in through the
lobby, there are some
illustrations, or
as he prefers,
sketches, out there. And
those are his. He's
a wonderful artist.
And if you haven't
had the time to
check them out,
please do before you
leave. They're a big
part of his story.
I also want to mention
that he will be
retiring in July. So
we're very, very glad
that he's with us
tonight. and he decided
to do the question
what is your
controversial mundane
opinion and he said I
don't really care for
Chick-fil-a and what's
even funnier actually
is that I emailed
everybody and I
requested answers from
them and he emailed
me back and said I
do not care for Chick
-fil-a so you really
know he doesn't care
for Chick-fil-A.
Here's Phil. I
saw Steve Martin do that.
I really wanted
to try it.
I'm happy to be here.
I'm glad I broke the
tension. I did it
for those people back
there because we're
all feeling it and I'm
happy to have the
chance to tell my story.
I worked 30 years
in the manufacturing
of food and when
I had the chance
to come and work
for the university
in the kitchen at
Nutrition Care Kitchen,
there was a lot
of similarities.
We didn't do like a
production that went
to supermarkets. We
did food that went
to patients. And the
difference, the biggest
difference was the
customer. The nameless
person in a supermarket
picking up a
half gallon of ice
cream I produced is
different than going
to a patient room.
And I thought I'd be
okay with it. But I
found on the second
day I was here, I was
with one of our patient
representatives,
and she was
getting the meal
orders for the next meal.
And we were in an ICU
unit, and the patient
had a lot of things
hooked up to them, and
they also had a trach.
And in order for
her to speak what she
wanted for breakfast,
she had to put
her finger over
the trach so she
could be heard.
And I was
concentrating very hard
on what was being
said and how this
worked, and I
wanted to be
understanding this,
this was new to me.
And the patient's
husband spoke up
and said, hey,
Lisa, that was the
rep, what's the
matter with Phil?
Why don't he smile?
And that really
hit me hard because
I like to smile.
I'm always
smiling. I'm a
pretty happy guy.
And I really thought
you can't go into
a patient's room and
not have a smile on
your face. That became
number one thing
I had to do. If I
went into a patient's
room, I had to have
a smile on my face.
and a little while after
that I was delivering
some pancakes I used
to run late trays
in the morning and I
looked at the ticket
and I knew the name
on the ticket it was
somebody from my
past somebody really
important to our family
and I wondered if it
was this the name was
the same if it was
the same person and
when I went into the
room he looked at me
and it was the same
person he said we know
who that is we know
who that is and he
said to his son what's
his name and his His
son didn't know who
I was, looked at my
name tag and said,
that's Phil. He goes,
that's right, that's
Phil. That's Phil.
Okay, we know who he is.
And I had such
a desire to do
something more
for this person
than just give
him pancakes.
I couldn't figure
out what that was,
but I would have
done anything to make
him more comfortable.
I could do that.
And when I was walking
away from the room,
I started thinking
about all the other
patient rooms I have
a chance to go into.
and I thought you
know everybody's
just is somebody that I
know I just haven't
met them yet
and it made me think
about that movie up
and the dog Doug in
the movie could speak
and when he met Carl
he said I just met
you and I love you and
I decided that that's
what I needed to do
when I entered into
a patient's room I
had to say to myself
I just met you and I
love you and uh that
was a really good
way to be. I tried to
use humor. I tried
to make people smile.
I tried to make them
laugh if possible.
Sometimes it's not
possible to do that
in the hospital,
but usually I could.
Usually I could make
their day a little
bit brighter, and
it felt really
good. It felt like
something that I
would have done
without getting paid,
and yet I was getting
paid to do that.
And when the opportunity
to go work at the
Nelson Rehab hospital
came and I could
leave a kitchen that
served 350 patients
and go to one that
served between 50 and
60 patients I jumped
at that chance to get
a more relaxed
atmosphere and the thing
about the rehab
hospital is people don't
come for a few days
they usually come for
a few months and
they're there for a long
time and you get to
know them and when we
were shorthanded
during the pandemic, I
was actually doing
my job as supervisor
and the job of a patient
rep. So I was going
up to the rooms
every day and getting
patients' orders and
getting to know them.
And there was a lot of
joy in making friendships
and stuff, a lot of
really good feelings
and a lot of love
that I felt for the
patients. There was one
16-year-old girl who
would beam a big smile
at me every time i went
in she knew i was
going to say something
funny but her smile to
me was the greatest part
of my day and on an
occasion i was walking
at taylorsville day
and stepped into
irrigation hole and fell
i tweaked my back and i
was having a really
bad day with my back a
couple days later and
when i went into her
room and she beamed at
me that smile it healed
me my back was better
and I noticed that
she was filling out
thank you cards for the
staff and I thought oh
no you don't I'm going
to go make you a thank
you card first so I
ran downstairs I had
some flare pins in my
desk and we had these
beautiful orchids in
the cafe and I drew
the orchids and I wrote
her a thank you note
and I ran up and gave it
to her before she
could give me mine and
told her thank you for
everything she's done
for me and she of
course didn't understand
what she'd done but I
felt really good about
that and I started
thinking about that and
when patients would go
home and I was going
to miss them but I
wanted them to go home I
thought you know what
I could do I could draw
a picture for the
patients and give it to
them on their last
day and tell them that
that's how they're going
to remember me and we
had this one very large
patient from Montana
who never married he
had a lot of nephews
and nieces that would
come and visit him and
he was a big outdoor
types but he was
paralyzed from the neck
down and it was a struggle
and i had long
conversations with him every
day and uh we we
like to talk and uh i
could make him smile
and laugh and it was a
good thing and i thought
i'm going to draw a
picture of a buck and
i uh i drew the picture
and on his the day
before he went home i
took it and showed him
and i said uncle i drew
this picture for you
you take it home and
hang it on your wall
and every time you look
at it you have to
remember me and that way
you can remember me
and he looked so angry
and so offended and I
thought oh my gosh what
have I done and I
said uncle what's the
matter and he said
nobody's ever done anything
like that for me ever
in my whole life and
I knew I was on to
something I knew it was
a good thing so I
started drawing a lot of
sketches for patients
and it was not always a
good a good thing but
usually was we had a
little 16 year old patient
who had hurt himself
in a trampoline
accident and he was from
Reno and his mother
was single and was
working two jobs trying
to raise a family so she
couldn't be there with
him so he was all by
himself in the room
and he was mired in the
fact of all the things
that he wanted to
do in his life that he
wouldn't be able to do
so for him i drew a
picture of the iron
giant and i put his
head on the iron giant
instead of the iron
giant's head and i told him
i said you're young
go to school become an
engineer figure out a
way to make a body or
to make a brace that
will allow you to do
some of the things that
you don't think you'll
be able to do and i
don't know if i if my
message got to him or
not but i know i i love
this kid i went into
his room one day and
he'd slipped out of
his wheelchair and his
arms were dangling on
the ground and I was
horrified I didn't dare
touch him I called for
a nurse who just come
and nonchalantly put
him back in his chair
and in my journal I
was so filled with rage
about him being alone
that I decided if I
could I would quit my
job and I would put
myself in the chair by
his bed and be there
because he needed support
and just sometimes
they just don't have it
and sometimes is sad
but I drew that picture
for him I had a patient
that was a librarian
and I decided I'm going
to draw an owl for
the librarian she had
cats I was going to
draw a cat I thought
I'll draw an owl and I
came up and she was
just getting ready to
leave for therapy but
I gave her the picture
and I said I'll talk
to you a little later
after your therapy and
she looked at me like
with like surprised with
shock at the picture
I gave her and a little
later I was in the
elevator and this
therapist that was there
the therapists are
kind of mean she pushed
me up against the wall
and she said why did
you pick an owl for her
what made you decide
to draw an owl for her
and I said I don't know
librarian owl you know
and uh when I went
to see the patient
later she told me the
story that the day before
accident she was in
Oregon with her niece
and her niece's husband
and they were walking
this wooded path and
the niece's husband
said that there's lots
of owls in this area
and to see one is very
lucky but to make eye
contact with one during
the day is considered
by the natives to be
the most luck you could
ever have and she was
on this trail and she
heard a rustling of
feathers and she turned
and looked and an owl
was there and it
swirled its head all the
way around and made eye
contact where she held
it for at least 60
seconds with that owl
before her niece and
her husband came and
scared it off and she said
it just was so amazing
the owl seemed so
important to me with
this accident that you
would draw that for me
i don't know i had a
patient that always
ate cantaloupe breakfast
lunch and dinner
so of course i drew a
picture of a cantaloupe
for her i had a
patient that was from
new orleans so i drew
a jazz band it was
a hard drawing but I
really thought it was
good when it was
over I had a patient
that loved the Mexican
soccer team so I drew
a picture of his
favorite soccer player
on the pitch and
he's always the first
person to like anything
I post on Instagram
another Instagram
experience I had was there
was a skater girl
and I drew I found I
went to her instagram
kind of stalked her
and found a picture a
video of her skateboarding
and i captured a
image from it and
sketched that and she
was so happy she put
in her story and she
commanded all her
followers to follow me
and i got 26 followers
the next day really
worked out good for me
there was a patient
that ran a a dog or i
don't know if it was
a school for dogs or
because she was raising
dogs but she uh she was
from Oregon and I
looked on her Instagram
I found a picture of
her dog with a ball in
its mouth and I thought
oh I'm gonna sketch
that and when I was
sketching I had the
thought maybe the dog
was in the accident with
her maybe the dog was
killed in the accident
maybe this is a mistake
but I was so far
along I had to finish
it and I gave it to
her and she cried and
cried because she missed
her pal so much and I
told her what I felt
about her the dog been
in the accident she
goes the dog was in
the accident but the
dog is fine but even
if the dog wasn't fine
this picture means so
much to me and she comes
and visits me every
time she comes to utah
to get her wheelchair
adjusted i uh drew
a lot of pictures there
was a very colorful
man and i drew i used
color i don't use color
often but i did a
dragonfly in watercolors
and the next day when
I went to see him
he said you googled the
meaning of butterfly
or dragonfly and I
did and I read the
meaning out loud to
him he goes that's
me 100% how did you
know I was a dragonfly
and it was always
really gratifying
to give the patients
the pictures if I
drew a patient's dog
they always cried
they always cried
and I sometimes cried
And at the end,
when they're going
home and I tell
them they had to
remember me, I
would thank them
for everything
they'd done for me.
And they would always
argue with me, no, no,
we haven't done anything
for you. What have
we done for you? You
can't tell me we did
anything for you.
You're the one that came
in here and served us
and took care of us.
And I would say, there's
a comforting thought
at the close of the
day when I'm weary and
lonely and sad that
sort of gets into this
crusty old heart and
bids me be merry and
glad it gets in my soul
and it drives out the
blues and it finally
thrills me through and
through it's just as
we thought that chanced
the refrain i'm glad
i touched shoulders
with you did you know
you were strong did you
know you were brave
did you know you were
there when i aired did
you know that i waited
and listened and prayed
and was cheered by
your simplest word did
you know that i long
for the smile on your
face for the sound of
your voice ringing true
did you know I grew
better and braver because
I had merely touched
shoulders with you I'm
thankful I live that
I battle I strive for
the place that I know
I must fill I'm
grateful for heartache I
meet with a grin what
fortune must send good
or ill I may not have
wealth and I may not
be great but I know I
will always be true for
I have in my heart the
courage you gave when
once I touch shoulders
with you thank you
whenever I tell
that poem people
say I gotta give
me a copy of that
so if you stop me
after the show I
have copies of it
if you want his
sketches are truly
wonderful please
ask him what his
Instagram handle is
we need to smash hit
punk kick whatever
kids say these
days and really
raise his following
y'all okay Okay.-
Phil George
-
-
Transcription
Our next storyteller
is Sashi Goteti,
and the Disney villain
that he most resembles
in his worst
moods is, oh,
Jawas from Star Wars?
Okay, seems like some
of you recognize him.
Tell me later about him.
Hello everyone, wow,
what a wonderful stage
to share with such
amazing storytellers.
And thank you
for the few that
laughed at the
Star Wars joke.
There'll be some
Lord of the Rings
references in here
too, so please shout
out if you know what
I'm talking about.
So this is a
healthcare story
of a healthcare provider,
and our journey
started in 2019 when my
wife Nidhi and I moved
to Oregon to start
my pediatric
hematology and oncology
fellowship, and we
fell in love with the
Pacific Northwest. We
loved going on hikes,
we allowed camping,
we allowed our
strolls by the river,
and in that moment,
joy to us was
exploring what nature
had to offer. Joy
was discovering
each other in the
midst of nature.
And this was a
few years after we
got married, and
we started having
discussions about
starting a family.
And as a pediatrician,
I was excited, a
little bit nervous,
but Nidhi, on the other
hand, was not so
excited, and for good
reasons. She has a few
cousins with developmental
disorders and medical
issues, so she
has seen the plight
of her cousins
firsthand, and not only
her cousins, but also
the way her aunts
and uncles would deal
with the suffering of
the children on a daily
basis so she was
not so sure about it
but as a pediatrician
I said hey those are
not inheritable
conditions so it doesn't
run on the family
and we should have a
positive outlook and I
told myself that I'm a
pediatrician I can
handle medical issues
and there was a small
voice in my head
that said don't get
too ***** and and
with some reassurances
we decided to
have a family, and
it was a difficult
pregnancy. It was
during the pandemic,
there was loneliness,
there were pregnancy
difficulties, but Nidhi
pulled through it.
And the moment when
our daughter, Adia,
was born, it is one
of the most precious
moments in our lives.
And for many of us,
life is, you know,
before children and after
children, and it was
no different for us.
And if you can think
about your memories
as pictures, which is
what it is for most of
us, but for us and
for me in particular,
my memory was not
moments of pictures
that you can
compile together
and think about
it for a moment.
But for me, it was a
slow motion video with
Adia being born and
then the doctor handing
her over to Nidhi.
And the look I saw on
Nidhi's face is something
I can never forget
it was a moment of pure
love it was a moment
of pure joy it was
unexpected because
Nidhi would tell me
after seeing the pictures
that I took of her
that even she did not
expect that she would
react in such a way I
mean I didn't know what
she was expecting but
um but there there
you go it was a moment
that was that's been
etched in our memories
so joy in that moment
was starting a beautiful
family together and
unfortunately the
happiness took a speed
bump and Adia our
daughter started to
show developmental
delays and some other
medical symptoms that
needed attentions so
naturally we saw our
pediatrician or
subspecialists medical
genetics, and no one was
quite able to diagnose
Adya, and Adya, also
being cheeky, would
start catching up to
her milestones, and
then she would slow
down, and then she would
catch up, and then
she would slow down.
So, playing
this, you know,
cat and mouse chase,
again, reassured
Nidhi that maybe Adya
is following her
own trajectory.
She's following her
own path, and once
again, we have to
be positive given
that we checked
off a lot of boxes.
So once again
Nidhi was reassured
but now she had a
thought in her mind
or a gut feeling
as she would say
that something
didn't quite add up.
But we went through and
then cut to 2022 when
we just moved to Utah
to start my faculty
job and that's when
things really derailed.
Adhya began to regress.
She started
showing symptoms of
seizures, and I just
sunk. I told myself,
what did I do?
What did I miss?
What else could we
have done? What other
subspecialists should
I have consulted?
Now, this is me being a
pediatric subspecialist,
and it wasn't an
easy time for us, but
I had to act. So I
reached out to our
colleagues here at the
U. This was even before I
started my practice, and
they were so generous
in seeing Adhya at
a very short notice.
And it was
during our second
medical genetics
consultation when
Adhya's diagnosis
was revealed.
Hypomelanosis of ITO.
It's a mouthful.
I think I heard
of it when I was a
pediatric resident,
but it's such a rare
condition. So
naturally, I researched,
I looked it up, and
not just a Google
search, but a proper
literature search,
and unfortunately,
it's a condition that's
not curable, and I tried
to, again, look for
reassurances, look for
a little bit of hope
to see, you know,
how severe is this
condition, and it can,
thankfully, range from
mild to severe symptoms,
including seizures,
severe autism,
developmental delays,
endocrine abnormalities,
skeletal abnormalities,
and unfortunately,
we started
to see Adya worsening.
so where does one find
joy in such a time
what does joy even
mean the reassurances
that i gave me came
back to haunt me
and where does one
where does one find
joy when your
reassurances just fall off
the cliff but i had
to stay strong i
had to find answers
and this is where the
lord of the Rings
reference comes in.
In The Fellowship
of the Ring,
Frodo Baggins wishes
he never received
the one ring, to
which Gandalf says,
so do all who live
to see such times,
but that is not
for them to decide.
All we have to
decide is what to do
with the time that
is given to us.
And that phrase grounded
me along with the
meditation practice
of vipassana where
one's goal is to keep
their mind in equanimity
so in balance and
not being swayed
too much whether
you're too happy or too
sad but to remain
balanced so that you can
think clear you can
come up with solutions
that are appropriate
to that situation.
It's easier
said than done.
Some people meditate
for years, and
they still get too
excited or too happy
or too sad, but
it's a practice that
once again kept
coming back to me.
And as this was
happening, I also
started a career as a
pediatric hematologist
at the UN at
Primary Children's.
And I noticed that
my encounters with my
patients and my
families changed. It
actually transcended.
And I could actually
see my patients and
my families through
their struggles,
through their worries.
And in one such
situation, I was the only
provider who had to
deliver a very, very
unfortunate diagnosis to
a patient with cancer.
And And the
patient's cancer
potentially came back.
And I'm not a
practicing oncologist,
but I was the
only provider
available with
some experience.
And this was a
family that's been
battling cancer for
over four years.
And I told myself, how
am I going to deliver
this news with any
amount of humility?
how is this family
going to trust me during
this difficult
conversation and I was
right it was a very
difficult conversation
that went for over an
hour the family was
obviously terrified
they were angry and they
did not trust me and
I had good reasons
because I was a complete
stranger to them.
But at the end
of that one-hour
conversation, some of
my team members told
me that that was
probably the best
conversation based
on that situation.
But I was not
happy with that.
I was not happy
as a provider.
I was not happy
as a parent.
So I went back to this
patient's room, and
the patient was sleeping.
And so I spoke with
this parent heart to
heart and I told this
parent with words that
I cannot repeat here
that it is a very
terrible situation that
they're in and I
completely acknowledge that
and I told them how
inspirational they
were as fierce advocates
for their child and
then I told them about
Adia and how I, too,
am a parent of a child
with medical issues.
And as I was saying
those words, I
could see their
eyes widen. I could
see their shoulders
dropping. I could
see the burden
releasing slowly.
And I could read their
mind. So you
do understand.
So you do understand
what it is to have
a child and a child
with medical issues.
So that ended up being
a two-hour conversation.
Some tears were shed,
some hugs were shared.
And I came out of
that room with joy,
not because I cured the
child of the disease,
but because I was able to
communicate what
I really wanted to
from the bottom
of my heart.
And that is
how I practiced
medicine from
since Adhya was
diagnosed till
a few hours ago.
Adya has made me a
better human being.
She has given
me joy in taking
better care of
my patients that
I could have
never imagined.
And the same goes
to Nidhi as well.
With the vicissitudes
of life that has
come at Nidhi's
feet, as a career
-driven person, she
had to let go of many
things to take care
of Adia at home.
But she's giving
back to the community
by volunteering at our
local autism group,
by volunteering at
our local library,
because we received
so much support
from our community
that it's only fair,
and there's a lot of
joy in giving back.
So Adia has made
both Nidhi and I much
better human beings.
So joy in that
situation is in giving
back, is in helping
others, is in being
better people.
Now Nidhi asked me
to remind everyone
why we named our
daughter Adya.
Adya, or Adi Shakti,
resembles the first
energy that God
released into the
cosmos in the form
of a warrior goddess.
And we wanted our
daughter to be
strong, to be
courageous, to be
fearless, but also
to be kind and just.
And believe me when I
say she's all of that.
She's three and a half
years old now, and
she takes her medicines
without any issues.
She gets sedated
from her eyes without
crying. She adjusts to
all the changes that
life has to throw at
her without too much
crankiness and that
shows how much strength
she has and that in
turn gives us strength
as parents and with
Adya's neurodiversity
there are many
moments of loneliness
because she doesn't
quite fit anywhere
and as parents we
don't quite fit into
the general society
but when you look
harder you will
find people as Nidhi
does. She is the
first to stop and ask
parents if they need
any help with their
children. She is the
first to volunteer.
So Adia is not
alone but in fact
she is the beacon
of hope for people
who are different.
And so in this moment and
through eternity
joy is Adia.
Thank you very much.
Adia, what a beautiful
name and tribute it's
definitely a word that
I will never forget-
Sashi Goteti
-
-
Transcription
We are so incredibly
lucky to have
heard varying modalities
of joy tonight.
And I also want to
thank you, Dr. Case,
and the rest of the
team for not only
letting me be your
emcee tonight,
but also partake of
this wonderful event
and hearing all the
stories tonight.
Thank you, Kathy. So
we hope as you
listen to the stories
tonight, you listen
not to only the
individual stories,
but you thought
about connections
between them and
connection to all
of our own stories.
there's always a
connection, no matter
what kind of fracture
or break or painful
gap you might be
feeling in your life
right now or in the
world right now.
Among all those
divides and divisions,
there's always some
way of connecting.
So we always end the
show with talking
about what next
year's theme is
going to be, and
we'll have a call for
stories early next
fall. We hope some
of you will think
about submitting.
Next year's theme
will be Together.
With that, I
would like to call
all our storytellers
back out on
stage for a final
round of applause
if you'll help me
welcome them out. You
can do whatever you want.
Thank
you all so much for
coming tonight. It's been
my honor to work with
these folks who are
not professional
storytellers, though you
might have been fooled
by how good they were.
I've enjoyed getting
to know them. I
hope you have too.
They will exit out the
stage door in a few
minutes and you may
greet them and shower
them with further
praise. So thank
you all for being
here tonight. Think
about telling your
story next year and
have a great evening.-
Thank You & Acknowledgements
-
-
-
Jose Rodriguez
-
-
Transcription
Good evening, everyone.
I'm so honored to
be here to share my
story, both as a patient
and as a physician.
I want to talk about
what it's like to
have unexplained
symptoms and how that
shaped my relationship
with medicine.
I want to start
off by saying this
is not a case
of misdiagnosis.
This is my story
of coming to terms
with my own self
-doubt and growing
up as a child of
modern medicine.
My story spans 20 years.
I'm a pediatrician
and a parent,
so I'm going to
relate my story to a
coming-of-age story.
It was either that
or to liken it to the
different eras of
Taylor Swift's music,
and while I know
a lot about Taylor
Swift's music, I
figured the growing up
analogy would be
more familiar to you.
I'm going to
walk you through
how my change in mindset,
much like how our
mindsets change
about our parents
as we grow up,
helped me move through
the fear, frustration,
and anger that comes
with being undiagnosed,
and then being
diagnosed with scary
diseases, to come to a
place of understanding.
I want to start
by talking
about autoimmune disease.
If you're comfortable
sharing, can
I have a show of
hands of who in
this room has an
autoimmune disease?
Those are diseases
like lupus,
MS, inflammatory
bowel disease.
We're like the
poster children of
unexplained
symptoms, am I right?
Now, can I ask you
to raise your hand if
you know someone with
an autoimmune disease?
wow there are over 100
autoimmune diseases
one in 15 people
has an autoimmune
disease these diseases
affect multiple
organ systems but
are largely invisible
they are lifelong
they're incurable
and we don't
understand them
i've been diagnosed
with three
Two of them being quite
rare. So in the world
of, if you hear
hoofbeats, think horses,
not zebras, I think
that makes me a unicorn.
What is autoimmune
disease?
Our immune system
is our defense. Its
job is to seek out
foreign things like a
splinter or virus
and get rid of them.
Autoimmune disease
happens when a
person's immune system
mistakes healthy
tissue for the enemy
and attacks it.
What are some
of the symptoms
of autoimmune disease?
well there are the vague
and there are the weird
vague means uncertain
of character
or meaning you as
a patient you don't
know how to
describe it and as a
doctor you don't
know what it means
fatigue which is
extreme exhaustion
malaise a general
feeling of being
unwell brain fog
which impairs
your ability to
think mood changes,
irritability,
depression, anxiety.
Wait, are you
worried you might
have an autoimmune
disease?
Okay, can we add
muscle aches,
joint pain,
neurologic symptoms,
GI symptoms,
skin changes?
And all these
things don't happen
at once. They come
and go over time.
Weird, on the other
hand, means very unusual.
They catch people's
attention, and
they're a good clue
to a diagnosis.
Those are the ones
that make TV shows.
The average person
with autoimmune
disease sees
six doctors over
10 years before
being diagnosed.
My whole life I have had
vague and weird symptoms.
Although the vague
ones have affected
my life the
most, it's the
weird ones that
got me a diagnosis.
the first time i
had vague weird
symptoms i was 20
in a pre-med in
college for months
i was exhausted
but i was trying to
get into med school
i fell asleep in
all of my classes
i fell asleep
while driving and
crashed my car that
did not prompt me to
see the doctor the
weird symptom did
I developed a
purple web-like rash
covering my lower
arms and legs,
****** reticularis.
I go to the doctor.
I have some tests.
I get diagnosed
with lupus.
In this coming-of-age
story as a doctor,
I'm a child,
and I'm being
raised by my
parents, medicine.
I go to my parents
when I'm sick. I
get comforted. I get
fixed. I think my
parents know
everything, and I want
to be just like
them when I grow up.
the next time i'm 24
year old beth and a
third year medical
student i'm exhausted
then the weird
rash is back a few
months later another
weird symptom
i developed a
wrist drop and then
a foot drop
mononeuritis multiplex
this time as a med
student i was like
no problem surrounded
by like a hundred
doctors they're
going to figure it
out. These people know
what they're doing
and I'm training
to be one of them.
It took many months
and many tests and many
doctors. So like a
teenager, I hear what
the doctors are saying,
but I'm also like,
really? Do you have any
idea what you're doing?
But as healthcare
professionals, we
know that diagnosis
can be a multi
-stage process, but
I got a diagnosis,
polyarteritis nodosa.
20 years go by. These
are my doctoring years.
Learning from
people and their
stories and not
just from books.
Remembering what
the textbooks say
and then getting
frustrated when it
doesn't actually
happen that way.
During that time,
my relationship
with medicine evolved.
I saw over and
over that medicine
is complicated
and we don't always
know the answers.
I'm a pediatric
hospitalist.
You know what can get you
admitted to the hospital?
Prolonged, vague symptoms
that no one can explain.
Also the weird ones.
I've spent my
career trying
to explain the
unexplainable.
I've heard over
and over, we're not
leaving until we
know what's going on.
And when people
hear there is no
explanation, they
think a few things.
Parents think,
these doctors don't
know what they're doing.
Patients think,
they don't believe me.
They can't help me.
Maybe my symptoms
aren't real.
Doctors question
their abilities
and they feel
powerless to help.
And what about
me? Was I having
symptoms during
that 20-year span?
Yeah, the vague ones
and a lot of weird ones
that no one can explain,
but at this point
I have multiple autoimmune
diseases, right?
Now I'm an adult here
in the house of medicine
and we have conversations
about things.
With my doctors, we
diagnose me as having
major depression and
an eating disorder.
Talk about doubting
my own thoughts
and the way I
feel in my body.
Treatment for
those helped a lot.
But for the past
three years, I
felt like there was
something wrong.
I saw doctors. I asked
friends who were doctors.
All of my tests are
normal every single time.
Also, my symptoms
of fatigue, brain
fog, muscle
aches, joint pain,
those are all
diagnosed as being a
middle-aged working
mom by society.
Can I just say
that it's really
hard to go to the doctor?
Especially for me
as a doctor, when
I go to the doctor,
I want to be right
that I needed to
go to the doctor.
I don't want to be
wrong and worse,
not have anything,
because then it
feels like I don't
know enough to
know when there's
something wrong with
me, and I've wasted
people's time.
Now I'm in that
unexplainable category.
Mostly, I think
my symptoms aren't
real. I guess
this is stress.
This is somatic.
I guess I am just tired.
Maybe I'm just
getting older.
I stopped
believing myself.
Then, aha, two
years ago, a weird
symptom. My hands
got puffy and my
forearms got really
tight and swollen.
Yes, a physical
sign and a weird
one. We can
figure this out.
I read and I think,
I have scleroderma.
Good thing I have
a rheumatologist.
And I've seen this
doctor for years and I
message him and he
sees me right away. He
does a history and an
exam and then he says,
now why do you think
you have scleroderma?
And I say, well
my hands are puffy
and my forearms
are swollen. Do you
have other things in
your differential?
Because scleroderma
is all I got.
To which he said, your
hands don't look puffy.
No, that was
not malintended.
It was meant to
be reassuring.
Like, it's not so bad.
Well, we ran a
lot of tests and
everything was normal
or nonspecific.
So I fell into
the, let's see what
happens. And if
nothing else turns
up, let's repeat
labs in a year.
Well, I'd already doubted
my symptoms
so many times.
And now I had a
physical exam finding,
a weird one, and
still no diagnosis.
This led me to doubt
myself even more,
to tell myself
repeatedly that all my
symptoms were just me
not being enough, or
maybe things really
were all in my head.
Medicine could
not give me an
answer, so I did
what we tell patients
with unexplained
symptoms to do.
Let's focus on treatment.
nutrition movement stress
management let's
do what we can
at this stage i'm an
adult in the house of
medicine so let's
think about that adult
child relationship
with your parents some
things you agree on
and others you don't
you sort of tread
lightly because when
you don't agree you
want to be respectful
and also they probably
know more than you,
but maybe on some
things they don't.
And I know how
the system works.
I'm not sick
enough yet to
make any of the
tests positive.
I'm in the
prodromal phase.
Keep monitoring.
So how did I finally
get diagnosed?
Well, I was a good
patient and I
followed up.
My rheumatologist
had moved,
so I saw someone else.
I actually went in with
a chip on my shoulder.
What brings you in?
I think I have
scleroderma, but all my
testing is negative
and no one else knows
what I have. But now
my hands are stiff and
contracted and my
forearms are so tight.
So I really do think
I have scleroderma
and I was just wondering
what you think.
She takes a look at
my hands and I know
that even when I
feel like I'm dying.
I present as really
well appearing.
I don't complain.
I hold it together. I
go to work and I take
care of people and I
come home and I take
care of my family because
that's what we do.
So preemptively, I
say, now the swelling
has decreased. I've
worked really hard on
taking care of myself.
So I look and feel
really pretty good
right now. I know what
my triggers are though.
So if you want, I
can put myself into a
flare and I can come
back in and you can
see how sick I look.
That's when she
said, I believe you.
That simple
phrase gave me
permission to
believe myself.
Five months ago,
I was diagnosed
with a systemic
form of scleroderma.
my own journey of
uncertainty pushed me
into the mature adult
phase of the parent
-child relationship
i'm now middle-aged in
the relationship with
my parents in this
house of medicine and
a lot has changed from
when i was a kid for
those of you who are
middle-aged doesn't
it feel like life
just booted you there
anyway as a mature
adult child we don't
get mad at our parents
for not knowing the
right way to help us.
Well,
let's just say that's
the goal anyway.
We see them as human,
as people trying
the best they can
with what they know.
I want to make
sure this doesn't
come across as a
misdiagnosis story.
No one was negligent or
malintended in any way.
This is just the way
it happens sometimes.
Things are not
missed so much
as they are hard
to diagnose.
Sometimes exams and
tests are normal.
Sometimes we need more
time for diseases to evolve
and help us figure
out what's going on.
We do want to do
something to make
the patient feel
better though, right?
So we try to be positive.
When we say everything
looks normal,
we intend to be
reassuring, but
as a patient, it
sounds dismissive.
So as a patient
and a doctor,
what would I
suggest and said.
Be vulnerable.
Be okay to be
uncomfortable
in the uncertainty.
I don't know, and the
story does not end here.
Do what you can do.
Offer treatments
and symptom
relief and a plan
for follow-up.
Who should the
patient go see?
Keep re-evaluating.
If it gets better,
great. If not, we'll
keep thinking together.
Here's where
promise comes in.
If you're a patient
and we're all patients,
I ask you to promise
to believe yourself.
You are the
expert of what
you feel in your body.
Advocate for yourself
just like when
parents advocate
for their children.
if you're a caregiver
and we're all caregivers.
When you're with
someone who's going
through a hard time
and you don't know
what to do, don't
let them be alone.
I'll end with a
favorite quote
from my life
coach, Ted Lasso.
After the team
loses a big game and
everyone's in the locker
room just defeated
he says I want you
to be grateful that
you're going through
this sad moment with
all these other folks
because I promise
you there's something
worse out there than
being sad and that's
being alone and
being sad ain't nobody
in this room alone
promise to believe them
promise to be with them
because even
if you cannot
shed light on
the journey ahead
you can be with each
other in the darkness
thank you-
Beth Vukin
-
-
Transcription
Thank you for being here
tonight to listen
to my story.
I made three promises
to my mom, Francisca
Stevenson, in her last
year of life that filled
me with dread. They
filled me with dread
because I didn't want
to let her down, and
I also wasn't sure if
I could keep them all.
To know my mom was
to love her. At 83,
she was beautiful,
petite, and always
had a huge smile
on her face. She
was a strong, proud,
stubborn, intelligent,
funny, feisty,
and kind woman.
Being born the middle
child of 14 and
raised on a farm
in Mexico made her
that way. She was
adventurous and came
to the U.S. by
herself to work at 18.
Mom met and married
my dad in Chicago when
she was 24 and he
was 37. My dad didn't
speak Spanish and my
mom didn't speak much
English, but that didn't
stop them from falling
in love. The day
after they wed, they
boarded a train and
moved to Salt Lake City.
Here they raised four
amazing children and
doted on eight awesome
grandkids. In her
late 50s, mom developed
health problems,
including atrial
fibrillation, a leaking mitral
valve, and breast
cancer. Thankfully, the
breast cancer was
curable. I'm grateful to
the wonderful UHealth
doctors that bought her
an additional 25
years with our family.
That care came at a
cost, though, in the form
of numerous doctor's
visits and diagnostic
tests. To give you one
example, my mom had
to have a procedure
called a cardioversion,
where they would shock
her heart back into
rhythm. And while
the procedure itself
only took a couple
minutes, the preparation
and the follow-up took
anywhere from three
to five hours, and it
also included mom having
to swallow a camera
each time, and she
didn't like that. She had
over 12 cardioversions
during her life. Can
you imagine that?
Despite her many
health challenges, mom
rarely complained, and
she always fought to stay
alive. Her family was
the most important
thing to her, and she
wanted to be here for
us. In her 80s, her
health declined, her
mitral valve was leaking
again, and her lungs
were filling with
fluid. She had to start
using oxygen, and she
hated it. The doctors
offered a heart surgery,
but after I requested
a meeting with a
palliative care doctor,
and after hearing the
risks and benefits of
the surgery, my mom
decided not to do it.
Despite the great
care mom received from
her specialists, I
was frustrated that
I was the one who had
to request a palliative
care consult. I wish
they were offered
routinely to patients
where the risks
of treatment may
outweigh the benefits.
On May 5, 2022,
mom was admitted
to the hospital
with aspiration
pneumonia.
As I slept on the
pullout couch in
her room, I was
awoken at 3 a.m.
by the sound of
her crying in bed.
She was on maximum
oxygen and had to
wear a mask over
her nose and mouth.
She was claustrophobic
and had removed
her mask. The nurse
was trying to put
it back on, but Mom
was fighting her.
I'll never
forget how scared
she was as I held
her trembling
body and tried
to comfort her.
Through her
tears, she said,
Donna, I never
want to come
back to the
hospital again.
I said,
I promise she will never
have to come back here.
I knew she wasn't
in her right mind
and was delirious
from her infection,
but I sensed this
was different.
Mom had always
been a fighter,
but I could see
she was exhausted.
As the antibiotics
kicked in and as her
condition improved, I
talked more with her
about what she had
said to me. I asked if
she would be okay if
the palliative care
team talked with her,
my brothers, and me.
Mom agreed to this.
We met with the team,
and they explained my
mom's options to her
and us. I explained
my mom didn't want to
come back to the hospital
again, so we talked
about hospice care
for the first time.
Mom was reluctant
to go on hospice
because it felt like
she was giving up, and
she didn't want to
be a burden to me.
After I explained
to her that it would
be an honor for me
to care for her and
that she would be
able to live her best
life by not continuing
with treatment,
she decided that she
would try hospice.
The palliative care
team assured her that
she could change her
mind at any time.
Mom moved in with me
on May 11, 2022, and
CNS Hospice began
providing excellent care.
Living together
was a blessing for
both of us. You
see, Mom and I
had become really
close since 2018.
She lost her husband
of 53 years, and my
32-year marriage ended.
We were both grieving
and helped each other
through difficult
times while sharing
a lot of fun moments.
Luckily, Mom
and I shared the
same warped
sense of humor,
and it helped us as
we laughed and cried
our way through
managing her care at
home and having
difficult conversations.
Mom was afraid of
suffering and having
a painful death,
but I promised her I
would make sure she
died peacefully. This
promise scared me
the most because the
peaceful death I wanted
for her might not
happen. Each night,
I prayed for the
strength to get through
what I had to do.
Sometimes caring
for mom was
like being on a
roller coaster.
She would have good days,
and she would
have bad days.
And she would be
fine for a period of
time, and then things
would get difficult.
I was working
full-time, and my
daughter watched
my mom when I went
into the office.
I am forever
grateful to my
daughters, brothers,
sister-in-law, and
extended family and
friends who helped
me. It took a village.
Because of the promise
I made to my mom,
she experienced so
many good times while
she was with me.
Visits from family and
friends, birthday and
holiday celebrations,
gardening,
watching her favorite
movies, and we
even got to take a
final trip to Moab.
Best of all, she
didn't have to go
to any doctor's
appointments, and
she never went back
to the hospital.
Thanks to the
wonderful care provided
by the incredible
hospice team.
About six weeks
before mom passed, she
asked me if she was
going to die soon, and
I said yes. My
daughter and I sat and
cried with her, and
we all agreed that it
******, and there was
nothing we could do.
I thanked her
for being my
best buddy, and she said,
Donna,
soon I will be
your dead buddy.
In typical mom
fashion, we laughed and
we cried some more,
and then we made a
big breakfast with
mimosas mimosas and
toasted to the great
times we had enjoyed
and to the future,
whatever it held.
At the end, my mom
was hanging on, and I
asked her why, and she
said she was afraid to
leave me because I
would be all alone. I
made a final promise
to her that she didn't
have to worry about me,
because I would live
my best life after she
was gone. I'm doing
this tonight by sharing
our story with you.
In the end,
my mom got the
peaceful death she
wanted, and she
died surrounded
by her family.
As I reflect on the
time I spent with
her, I think of all
the first and last
moments we got to
share during our lives.
Mom watched me take
my first breath,
and I watched her
take her last.
Mom changed my
first diaper,
and I changed her last.
Mom helped me take
my first steps,
and I helped her
take her last. The
promises I made to my
mom allowed me these
precious experiences
with her and a
chance to care for
her the way she cared
for me as a baby,
child, and adult.
Given the choice and
knowing what I know
now, would I make
those promises again?
You bet I would.
Te llamo mamacita.
Thank you.-
Donna Branson
-
-
Transcription
Thank you for the
opportunity to tell you
a story about a
patient I took care of
years ago that taught
me a very important
lesson and resulted
in me making a
promise to all future
patients I would see.
To understand my
story, I need to
tell you two things
for background.
The first one is
a phrase that I
first heard in
medical school but
later in residency,
and the phrase
was, there's nothing
more we can do.
And of course, that
phrase was applied
to people with
terminal illnesses. And
even if we were doing
palliative care and
comfort care, still
at some point the
attending or the chief
resident would say
to the group, well,
you know, there's
nothing more we can
do for this patient,
and we would move
along on our rounds or
whatever and go on
to the next person.
So keep that in
mind. Second thing, I
need to tell you
about this community I
went to. When I first
started practice,
I went to a small
rural community
in northwestern
California.
What was unique about
this community was
probably the large number
of young people that
lived there, and these
were young people
who were very interested
in living sort of
the natural life. Many
of them had farms or
lived in group settings.
If you were back
there in those days, you
would have called them
probably hippies. But
they really wanted
to live natural. They
weren't big fans of
medicine, I can tell
you. They didn't come and
see me unless they were
pretty sick, or maybe
just for checkups for
their kids or things.
But definitely a
community that was
interested in
natural things. And
in this community,
there was a woman.
Her name was Autumn.
And when I first went
there, I didn't know
her. I'd never met
her. But I heard a
lot about her because
she ran an herbal shop
in the town. And she
was the place where
many of these young
people would go if
they had concerns or
issues and see if there
were any herbal
treatments that they
might be able to take
for their ailment. It
was interesting because
over time I felt
like Autumn and I had
an unofficial referral
agency because if
she had a person who
would come in asking
for an herbal treatment
who she thought
was quite sick, she
would tell them to
come over to my clinic.
And likewise, if I had
a patient who didn't
have anything I thought
was serious and I
didn't really have
anything special to offer
for some general
complaints, I often refer
them to Autumn and
say, why don't you see
what she might suggest
for your ailment.
Well, anyway, I was
in practice in the
community, and it was
actually the third year I
was there when I actually
saw Autumn's name
on my appointment
schedule. I was kind of
puzzled because she
being sort of the leader
of the natural health
group, and I was
surprised she was coming
to see me, and I was
wondering what it
was all about. And so
when I went in to see
her that afternoon,
introduced myself, and
I said, I've heard a lot
about you. I know a
lot about you, and I
send you patients. She
says, yes, I know a
lot about you, and I
send you patients too.
Autumn was 50. She
turned 50 and she said,
I hadn't come to
see you for anything
because I wanted to
make sure you'd be
staying in the community
for a little while.
But since you've
now been here for
three years, I thought
I'd come in and have
a general checkup.
And I turned 50 and
I've gone through
menopause and I'm fine
with that, but I
thought I ought to get a
pap smear and just
have a general exam.
So we did the exam
and she was healthy as
can be, did the pap
smear. She didn't want
any blood work. She
didn't want to consider
any stool tests or
tests for colon cancer.
She She just wanted to
know that everything
seemed to be fine.
And I said, yep,
everything is great.
I'll let you know about
the pap smear results,
which were normal.
And like any
patient, I would say,
you know, please
come back if you have
any concerns.
Otherwise, back in those
days, we were
doing female exams
once a year. So
please come back next
year, and we'll see
how you're doing.
And that was fine.
I think for the next
couple years, she
came back on an
annual basis, and
everything was fine.
But I think it was the
fourth year. So when
she was 54, she came
in for annual exam.
But she had a little
puzzled look on her
face. And I said,
good to see you again.
how was everything going?
She said, everything's
fine except I think
I found a small
lump in my left breast.
I said, okay, well,
we'll check that out
as part of the exam.
Well, all her exam was
normal except there
was a very small marble
-sized, very hard lump
in the upper outer
corner of her left
breast, which concerned
me greatly. It moved a
little bit. It wasn't
totally fixed, but it
did move a little
bit, but still very
concerning because very
hard lumps are often
malignant, cancerous.
I checked under her arm
and around her collarbone
and things. There
were no enlarged lymph
nodes. This is a good
sign. And so like we
do for any patient, I
said to Autumn, I think
I need to refer you
into the bigger town
that's 20 miles away.
I would like to have
you see a surgeon. I'd
like to have you get
a mammogram of this.
And I'd like to have
the surgeon maybe see
about doing a biopsy
of the lump so he can
see what it is. And
because if it's a cancer,
this is a good time
to do something about
it. Well, Autumn
politely refused. No, I
don't want to do that. I
just wanted your opinion
and wanted you to
verify what I was
concerned about because
I have several herbal
treatments that I'm
going to use for this,
but I just wanted to
make sure that's what it
was so I could pick the
right things to use.
Now, inside, a voice
inside of me was just
screaming inside,
please, Autumn, take the
referral, but she
didn't want to do that.
Well, she didn't
come back for another
year, but when she
came back the next year
for a checkup, now
she had a very large
mass, probably, oh,
a couple inches by
maybe an inch or so
in her upper left
breast, which was
very large, very hard,
totally fixed to the
underlying tissues. She
now had enlarged
lymph glands under her
arm and nothing under
collarbone area.
But I said, it
looks like this has
obviously gotten
a lot worse. She
says, I know,
things just don't
seem to be working.
I said, well,
you know, we could still
send you in for the
mammogram and the
biopsy. And again, she
said no. And once
again, inside me, I just
was pleading with,
please, Autumn, please do
this. But she didn't
want to do that. She
wanted to stay with a
natural approach. And I
think, thinking back,
I think she just didn't
want to have the
interference that modern
medicine inflicts upon
patients sometimes.
Well, she was having
a bit of pain now, and
so I offered her low
-dose pain medicine,
which she was glad
to have, and she took
that. She was only a
couple months before
she came back again,
but this time because
that mass was bigger
and had eroded through
the skin of her left
breast, causing a
superficial infection
and a bad smell and
irritation and
things. So I obviously
explained she knew what
was going on, and we
talked about how to
clean her wound and how
to keep it covered with
antibiotic ointment
and gauze, which she
said she could do.
I asked her if she
needed anything more
than the pain medicine.
She said, not really,
but she was just
having trouble eating,
didn't have much
of an appetite, and
was losing weight. I
asked her if it'd be
okay if I arranged
for a nursing service
to come visit her a
couple times a week to
change her dressings
and just check on
her, and she was okay
with that, so we did
that. And I would
get regular reports
from the nursing
service, which was very
nice. I mean, at least
I'd say once a week
they would get a note
or a call, and they
would update me on
how Autumn was doing.
Over time, she needed
more pain medicine.
She needed medicine
for nausea, but
obviously things weren't
going well. I mean,
it was going to be
a downhill course.
It probably was only,
I think I made one or
two home visits on
her between the time I
saw her for the
mass eroding
through the skin
and before the
visit I'm going
to tell you about.
But because I would
make home visits on
patients when it was
appropriate and made
it easier for them
not having to come to
the office and wait
in the waiting room.
But anyway, one afternoon,
there was a call
to my secretary from
her neighbor saying,
we're with Autumn and
she's not doing well,
but she really would
like Dr. Babis to come
and see her this afternoon.
Is that possible?
And the secretary
asked me, I said, well,
I'll have to wait
till I finish my
afternoon appointments
so I can see her
early this evening.
And so they relayed the
message and that was
fine. So okay, I'll
plan on visiting
Autumn this evening.
As I was driving
this beautiful drive
in the in the forest
and of areas of
this Northern
California community,
going out to Autumn's
little home and
her little, actually
little farm,
beautiful garden,
orchard she had there.
I kept thinking to
myself that phrase,
there's nothing more I
can do. There's nothing
more I can do. I've
tried everything she
was willing to take
and there's nothing
more I can do. And how
do I tell her that? I
got to figure out how
to say that to her.
Well, next thing you
know, I'm pulling up
in front of her little
house, almost like a
little cabin and parked
my car and neighbor
came out to greet me
and they escorted me
into her room, kind of
her front room area.
There was a sofa
there and Autumn was
lying on the sofa
covered up with blankets
because she obviously
got very cold easily
with her significant
weight loss. There
was a chair put next
to the head of the
sofa by her head and
I was motioned there
to sit in that chair
close to her head.
I sat down and I was
about to clear my
throat and say,
Autumn, I'm glad to be
here but there's
nothing more I can
do. Before I could
get those words out.
She reached out her
hand and she said,
Dr. Babitz, will you
just hold my hand?
And so I took
her hand and we
looked into each
other's eyes.
And I don't know how
long it was. I mean,
in some ways it seemed
like an eternity.
Other ways it
seemed like not long
enough. Probably it
was not more than
four or five minutes.
I don't remember.
But at some point she
closed her eyes and
gave a sigh. She
was very tired. She
let go of my hand
and she said, thank
you for coming.
And I said, well,
you're very welcome.
And I kind of got up
quickly and turned
around because I
didn't want everybody
to see my eyes
filling up with tears.
And I left her
house and I went to
my car and I cried
all the way home.
About two days later,
I think, we got
a phone call from
the neighbor saying
Autumn had passed
away peacefully
in the night, the
night before, so
just a day or so
after I had seen her.
At that point, I
remembered some phrases I
remember hearing in
residency, and one of the
phrases was, patients
don't care how much
you know until they
know how much you care.
And what struck me
then at that point was
patients may not care
how much you know,
they may not actually
care how much you care,
but they often care
if you can be there.
And there's no way
of faking that. You
can't fake being
there. And for Autumn,
what was critical
was my being there.
And the promise I made
to all future patients
was, to the best
of my ability, when
you need me, I will
be there for you.
Thank you for allowing
me to share this story.-
Marc Babitz
-
-
Transcription
You know, I never
thought I'd be here, not
just on this stage,
but living in Utah.
You see, two
years ago, I had a
very content life
in Las Vegas.
I'd been there
for 14 years and
was very
established in my
career, community,
and friends.
During that time, I'd
made a lot of progress.
When I first moved
to Vegas, I promised
myself I'd finally
finish college. I'd
been working on that
for 20 years. And I
was able to complete
not one, but two
degrees, a bachelor's
and a master's degree.
I love architecture
and history,
and I managed to
get involved in the
preservation
community in Vegas.
Most people don't
think of historic
preservation in Vegas,
but it's alive and
well, and I quickly
began volunteering
at the Neon Museum
and working hard to
get historic
designation for the mid
-century modern
neighborhood I lived in.
We became the
first neighborhood
to receive historic
designation
in unincorporated
Clark County.
I also left the private
sector, started my
career in the public
sector, and armed with
my experience in
completed education, I
quickly began working my
way up in the organization
and landed in the
leadership position.
I'd continued to climb
the ladder, always
looking for the next
step up and calculating
the pay increase
that went with it.
It wasn't always
exactly what I wanted
to do, but it was
great money and good
position and stability
with benefits.
And that's the
American way, isn't it?
It's work, you're not
supposed to enjoy it.
As you can tell, I
was pretty established
with some roots firmly
planted in Vegas.
So how did I end up here?
Well, I met the man
that would become my
husband, and it changed
my entire world.
You see, he's from
here, born and
raised, even living
in the home his
parents bought
almost 50 years ago.
In fact, he was
even the caretaker
for his 85-year
-old mother.
We met because he
happened to be in
Las Vegas at the
late summer of 21 for
a friend's 50th
birthday party, and
because we were in
close proximity, the
dating app I was
on brought him up.
We chatted back and
forth and started
getting to know
each other. We found
out we didn't have
much in common. In
fact, it seemed that
the only thing that
we had in common was
that we were both
in the aviation
industry at the time.
He worked for
an airline based
out of Salt Lake,
and I worked
for the airport
in Las Vegas.
Because chatting was
going so well, we
talked about meeting
up, but his schedule
for the birthday
celebration was pretty
full, and, to be
honest, Vegas locals
never want to go
anywhere near the Strip.
So he came up
with a great idea.
I could meet him
at his gate as
he was waiting
for his flight.
That seemed like the
perfect idea, so I took
a break from work and
walked all the way
out to the D gates. And
if you aren't familiar
with the Vegas airport,
it's a bit of a
hike, even including a
tram ride to get there.
As I walked up to gate
D36, I saw him stand
up. He was playing
the Wheel of Fortune
slot machine, and he
walked towards me.
You have to remember,
this is during
COVID, so we still
had masks on.
I didn't get to see his
beautiful smile yet,
I just saw the kindest
eyes I'd ever seen.
we stood there chatting
and getting to know
each other and I
could feel a genuine
connection with him but
I really had to get back
to work so I told him
I wanted to continue
texting with him and
I started to get ready
to leave that's when
he did something that
confirmed there was
something special about
him he asked if he
could walk with me back
as far as he could
which was the checkpoint
I tend to be more
practical so my first
response was why
would you do that
it's a long walk
including a tram ride.
His response, I just want
to get to know
you better.
And so began our
long distance dating.
There were many trips
back and forth for
both of us, mostly by
plane, and there were
more than a few that
were drives as well.
The more time I spent
visiting him, the
more I got to know his
friends and family,
his very large family.
He is the ninth
out of ten children,
so there were lots of
people to meet. And
even though we didn't
really have much in
common, it seemed to
be working. In
fact, we realized we
complemented each other
with our differences.
Very early on, he told
me he loved me, and
I responded with, you
need to slow down.
I explained that
things were going
well, but he was
a few steps ahead
of me, and I
needed more time.
He calmly responded,
that's okay, take
your time, because
I know you're
going to marry me.
It was clear things
were getting serious,
but we lived in
different states.
I was well established
with my job and
community, so I knew
I didn't want to move.
Plus, I had a pool.
I wasn't sure how
we would make it
work. I just knew I
wanted it to work.
In March of 22, we
both accidentally
discovered we were each
planning on proposing.
I can't even tell you
exactly how it happened,
but after a night
out with friends, he
blurted out that he was
planning to propose.
In shock, I just
responded, you were going
to ask. I was going
to propose to you.
I was so excited,
I just started
talking about
all my plans.
I then went
on to tell him
how I was going to do it.
I'd made plans to
get private access to
the Neon Museum at
midnight on April 9th. I
was going to give him
my tour that I did
when I volunteered
there, and then at one
of the wedding chapel
signs, I'd have the
ring hidden so I could
drop to one knee.
I even had someone that
was going to video it.
Remember, I said,
we're opposites here.
After I detailed
all my plans, I
asked, how are you
going to propose?
He shrugged and
said, I don't
know. I haven't
really thought about
it. I was just
going to do it.
And that describes
our relationship
and what started
our promise to
each other to build
a life together.
Now that we were engaged,
we discussed what
things would look like
once we got married.
We decided we'd
probably need to
still live in two
different states, but
eventually he would
move to Vegas.
It just seemed
to make sense
with my career
in the house. Did
I mention the
house had a pool?
A few weeks later,
after another
weekend visit to
Salt Lake where we
spent more time
with his family and
friends, I got ready
to return home.
As I was in the
airport waiting
for my flight, it hit me.
He was really
more established
here than I was in Vegas.
It wasn't the same
kind of established
that I was. It
was actually a
more important kind
of established.
I had no family
in Vegas, and
most of his
family is here.
And family is very
important to him.
While I had a great
career built in
Vegas, it was
something I was working
for because of the
pay and the title.
Would it really be that
hard to give it up?
We were texting back
and forth while I
waited for my plane,
and he made a comment
about when he was
going to move to Vegas.
Without even pausing
to think, I responded,
you're not
moving to Vegas.
I just knew I couldn't
ask him to leave
his family. At
that point, I knew
I'd be moving. I just
didn't know when.
Have any of you
ever had a bad
day at work?
And not just a
bad day, but a
really bad day.
The kind of
day that makes
you reevaluate
everything.
Well, I had that
day, and as I
left work, it
dawned on me, why
should I continue
to stay here?
Shouldn't I be
just as invested in
taking care of
myself as my career?
I'm already
planning on moving.
The housing and job
markets were good.
Why not make
the leap now?
We talked it over and
planned it out and
decided it was the
right thing to do.
Thanks to the housing
market, I had a good
amount of equity in
my home, which would
allow me time to do
some job searching.
I made a commitment
to myself to not
just find another
job, but to find a
place that really
aligned with my values,
and this time, I
would not focus on
job titles or the
highest-paying job.
Everything moved in
fast-forward now.
Within six weeks,
I had quit my good
government job, prepped
the house to list and
sell, sold the house,
packed everything
up, and hit the road
to start my new life.
Our new life.
I spent the
next five months
settling in and
applying for jobs.
My focus was no longer
aimed at position
titles and pay.
I wanted an
organization that
really aligned with me.
But I have to
tell you, over
five months,
it can start to
get discouraging
job searching.
Lots of rejections,
and a lot of employers
that never even responded
to my application.
I started to
wonder, is the
right job even out there?
Every time I applied
with a new organization,
I would always ask
everyone I knew what
their impression was
of them as an employer.
Most places were
a mixed bag of
response, some
good, some bad.
One employer, though,
was consistently
positive, no
matter who I asked,
and that employer
became my focus.
I'd already applied
for a few positions
with them, but I hadn't
heard anything back.
I'd had a couple
interviews for a
different public
sector position,
and I was
certainly qualified
for it, and the
pay was decent.
I knew I could do
the job, but I didn't
have the feeling that it
was the organizational
culture I was
really looking for.
I was also running
low on time.
Would I really
need to settle?
Finally, a call
for an interview
came from the
organization I favored.
It was for a position,
a bit lower than
I'd had before, and
it was in health
care, something I
hadn't worked in before.
But I had the
skills, education,
and experience
to do the job.
Let me point out that
this was a position
that I probably
wouldn't have
considered before I
made that commitment
to myself to find
the right employer.
It was time to
take a chance and
see if they
would live up to
the reviews I'd
heard about them.
The interview
came, and I felt an
immediate
connection during it
with the
organization, the job
position, and even
the interviewers.
As soon as the
interview was
finished, I called
my fiancé to tell
him about it and
the position.
He listened to me, and
once I finished, he
said, You've not been
this excited about
any other position
you've applied for or
interviewed for. Do you
think this is the one?
Well, I wasn't ready
to say that yet.
While I had a
really good feeling
about the organization
and the job, I
also know it's easy
to say the right
things and then
not live up to what
you preach. I
needed to see more.
You know what? I got
a second interview.
During that interview,
I felt even better
about the culture
of the organization.
You could tell it
was part of each
of them and their
daily routines.
I was encouraged
and excited.
So much so that I
withdrew from the other
position I'd been in
the running for. Even
if this position wasn't
it, I knew now that
the other one wasn't
what I really wanted.
I had some hope.
And I got a
third interview.
This time with
someone in leadership.
And to me, this
would confirm if the
culture was truly part
of the organization.
And you know what?
It was. I felt
confident that this
was where I wanted to
be. This is what
I'd left my job for.
I was very excited.
And I got the job.
And I've had it for
just over a year now.
and it's still
everything I
thought and hoped
it would be.
I've even joked that
had I known then
what I know now,
I would have moved
here for this job,
even if it hadn't
been for getting
married to Lynn.
Speaking of Lynn,
next month we'll be
married for one year.
He's also here tonight,
and he had no idea I'd
be telling this story.
A lot has happened
in the last couple of
years for me, and
it would have been
very easy to have not
had those changes.
I could have stayed
in my comfortable,
happy life in
Vegas, and I
would have probably
been content.
While I no
longer have a mid
-century home with
a pool, I do have
an established
great life here.
I've traded aviation
for health care,
and I'm married to
my wonderful husband.
I have a job working
with hospital
volunteers, which
is so rewarding,
and I love going
to work every day.
I have established
friends and family,
and I've even
managed to get
involved in historic
preservation here.
Somehow I wound up on the
board of
Preservation Utah.
Oh, and we're
still caring for
Lynn's mom. She
just wants me
to call her mom
now. she's 87.
All because I made
a decision and some
promises to better
myself. And while on
the surface, it may
seem like my life
was turned upside down,
I think that maybe
it was finally
turned right side up.
Thank you.-
Patrick Becker
-
-
Transcription
On a Monday in June,
roughly a year ago,
I reported to
the hospital at
5 a.m. for my
first surgery as
a third year
medical student.
The procedure was
called a tracheal
resection and the
patient was a young woman
with a condition called
tracheal stenosis,
which is where the
trachea or the windpipe
becomes scarred and
narrowed. It makes it
very difficult to
breathe. And so this
procedure was going
to remove about
four centimeters
of her trachea and
then reconnect the
ends back together so
that she could breathe
normally again.
It's a very long and
difficult procedure.
There's many things that
can go wrong. It takes
about eight hours.
And so being in
the operating room
for a procedure like
this is an experience
that is full of
awe and wonder
for all of about
30 minutes.
Because you have to
understand that as a
medical student,
when you're in the
operating room, it's
just a very socially
and physically
uncomfortable place to be.
socially because you're
being graded, right?
There's this very
intimidating surgeon
who is observing everything
you do and making
sure you don't mess
up, asking you random
anatomy questions at
any given moment, and
you're just terrified
the whole time. And
then physically,
you have to scrub in
properly. You have to
wash your hands in such
a way that you don't
contaminate yourself.
And then you have to
put on the gloves and
the gown perfectly so
you don't contaminate
yourself or anybody
else. And you go to the
patient's bedside and
you stand there and
you can't touch anything
that's not sterile.
And your hands have
to stay in what we
call the box. Your
hands cannot go above
the collarbones.
Your hands cannot go
below the waist.
Otherwise, if they become
non-sterile, you
then have to de-scrub
and then re-scrub and
it's a whole mess.
And so here you are
standing like this and
you're holding a
retractor usually and
you're boiling hot
because the lights are
beating down on you,
and you're trying not to
pass out, your feet
are going numb, and
at any moment the
surgeon can yell at you
and ask you a question
to identify a piece
of anatomy that you
can't see because you've
been spaced out for
the last three minutes
because you're trying
not to pass out.
It's just not a very
pleasant experience.
The novelty wears
off very quickly.
So I show up to the
operating room. I'm very
nervous. We get the
patient off to sleep,
and the surgeon turns
to me and says something
that should normally
be very comforting
and inviting. She says,
hey, this is going
to be a really long
procedure, and I always
feel really bad for
the medical student
because you just have
to stand here the whole
time. So you get to
pick the music today.
And I immediately
panic, and my mind
goes completely
blank. And so I
just say the first
musical genre
that comes to my
mind, which is ska.
Yeah.
For those of you who
don't know what ska is,
it's a musical tradition
that has a rich
history. It borrows
influences from jazz,
and from reggae
and from punk rock.
I quite enjoy it, but
I also acknowledge
that it is a very
acquired taste.
The kind of taste
that you can only
acquire by being a
teenager who spent
too much time hanging
out at Hot Topic.
Like, you know when
you show a friend a TV
show and you really
want them to like it?
And it becomes obvious
like five minutes
in that they're just
not into it, but
you have to sit
there for the rest of
the episode in awkward
silence. Imagine
that sensation, but
for eight hours.
So needless to say,
I am mortified.
Fortunately, nobody is
implied enough
to mention it.
There is one
particularly long and
obnoxious trumpet
solo during which
the attending surgeon
looks up at me
and makes the face
that you make into
your fridge at one o
'clock in the morning
when you're trying
to find a snack.
One of those.
Despite all of this, the
surgery is going fine.
We have the patient's
neck open. We have
exposed the trachea
fully. We've removed
the scarred portion
without incident.
And the trachea is
just open for all
the world to see.
And I'm staring
down at it like the
barrel of a gun.
And the resident
notices me
staring. And she
leans over to me.
And she says, hey, stick
your finger in there.
So I do, obediently.
And I look
at her quizzically.
And she
locks eyes with
me. And she says,
you don't get to
do that every day.
So the surgery goes
fine. We finish
up. We close the
trachea securely. It's
airtight. We put
everything back to
where it's supposed
to be, and we close
the neck back up,
and we get the
patient off the post
-operative recovery.
And I get home
around 7 p.m. I'm
exhausted, and I'm
just agonizing over how
I had behaved.
Had I come off as
weird? Oh, my gosh,
why did I pick ska?
How am I going to avoid
embarrassing
myself for the
rest of this two
-week rotation?
And then the next
morning, I have to go
back and do it all
over again. At 5 a.m.
I need to report what
we call pre-rounds,
which is where the
medical student goes
and sees the patients
you operated on
the day before. If
any of you have ever
been admitted to the
hospital and somebody
came and woke you up
at 5 a.m. and asked
you if you'd pooped,
yeah, that was me.
That was my job.
So I show up and I
roll into the hospital
and I go to this young
woman's room that we
operated on the day
before and I knock on the
door and I open it and
I flip on the light
and there she is sitting
bolt upright in bed
and it is obvious to
me that she has not
slept a wink it is
obvious to me that she is
terrified and she is
in pain and in her neck
is something called
the gorilla stitch we
place it at the end of
this surgery it's a suture
that goes through the
flesh at the point
of the chin straight
down and then through
the flesh over the
sternum, and it's held
taut. It is intended to
be painful. It is intended
to forcibly remind
the patient not to
extend their neck
because if they do, they
could burst the stitches
that are in the trachea
and it would likely
be immediately fatal.
And so here she
is with this
medieval *******
device in her neck,
terrified, in
pain, and alone.
And I am forcibly
reminded of a
conversation I had
with my father right
before starting
medical school.
My father is a nurse,
and he explained to me,
look, medicine will
quickly become a job,
but you have to
remember that while
for you it's just
another Tuesday,
for the patient you
are often witnessing
the worst day of
their entire life.
I had completely
forgotten that.
In medicine, we
intellectualize surgery,
maybe as a coping
skill, maybe just
out of forgetfulness,
but we think of
it as an intellectual
pursuit. It
requires a lot of
knowledge and skill and
practice, a certain
degree of artistry.
And in the pursuit
of those skills,
we forget the
more immediate
human perspective
of surgery,
which is that
to the casual
observer, surgery,
and indeed most
of medicine,
is body horror.
I mean, it is
a terrifying
and visceral experience.
We had taken this
person apart and
put her back
together again. we
had disassembled
the biological
machinery that was
keeping her alive,
and I'd stuck
my finger in it.
In fact, I'd been
kind of bored and
worried about myself
the whole time.
And so, in medicine,
we are so prone to
squeezing out the
immediate emotional
responses that we
should have, those
emotional responses
that make us human.
I understood in that
moment why doctors
are so frequently
seen as cold and
uncaring because
it happened to me.
And it hadn't taken
years. It hadn't
taken months. It
had taken 30 minutes
of being a little
bit uncomfortable
for me to completely
forget the life that
we held in our hands.
And I know it's not
comforting for you to
hear that from a medical
student, But I also
feel like if we as
medical professionals
want your trust, we have
to be honest with
ourselves and with you.
So I spent the next
two weeks seeing this
patient every morning
on morning rounds,
and I got to see
her recover. I
watched the drains
come out and the
oxygen come off,
and we pulled that
stitch from chin to
chest out, and she
could move her
head freely again.
And I got to see her
get her life back,
essentially. I got
to talk to her every
morning, and she
expressed, yes, she was
terrified by this whole
process, but she was
also just simply so
grateful that she could
breathe normally again
for the first time
in years, and that
experience was more
wonderful than the most
complicated surgery.
There's this concept in
philosophy called
the sublime.
I think about it often.
It's the combination
of awe and ******
that we experience
when we encounter
natural phenomena
that are beyond human
comprehension.
It's different from
fear. Fear causes
the mind to contract.
Whereas the sublime,
that awe, that ******
causes the mind to
expand. And while
it's frightening, it
also reminds us that
we're human. It
gives us a deeper
appreciation for life
and the world and the
people around us. It
reminds us that yes,
the joy that you and
I feel are not the
same, the ****** you
and I feel are not
the same, but we
share those emotions.
And they remind us
that we're human.
And I believe
it's that sublime,
those emotions
that can bridge the
gap between patient
and physician.
In the face of the
******, but also there's
the mundanity of
not just medicine,
but everyday life, we
can have compassion
and empathy for
each other if we can
simply acknowledge the
miraculous fact that
any one of us could
be experiencing the
highest highs and the
lowest lows of the
human experience on
any given Tuesday.
And so I promised
that Tuesday,
standing in that room,
that I would not become
numb to the sublime
privilege that it is
to work in medicine
and with patients,
that I would not
forget the human
that underlies all of
the skills that I have
to work to attain.
I'm not perfect at this.
I probably will never be.
I can't promise
that I'm not going
to get hungry
or distracted or
tired when I'm
taking care of you.
I cannot promise
that I'm going to be
able to maintain
a sense of wonder
for all eight hours
of your surgery.
But I can promise
that I will always
remember that
young woman sitting
upright in a hospital
bed at 5 a.m.
And because of that,
I will remember you.-
Charles Teames
-
-
Transcription
I would like to
start by reading
an email that I
sent out to my
entire team a
couple of years ago
on February 9th,
2021 at 4.22 p.m.
at the very end of
my shift so that I
could run out of the
building as fast as
I could the second
I hit send. And I
think you'll understand
why in a minute.
Unfortunately,
I don't run
as fast as I would like.
But here we go.
Hello. So, I wanted
to update everyone
I work closely with
on my name change
so that there's no
confusion in clinic.
As some of you know,
I began medically
transitioning a few
months ago, and
although it is not yet
a legal name change,
and my epic notes
will still display
my old name for now,
in clinic I now
use the name
Ivan with patients
and staff.
He-him pronouns are
also appropriate. yet.
As far as patients
are concerned,
it is likely that
I will not always
be addressed
correctly, and my
preference is to
just let that go.
These are brief
interactions, and there's
no need to take
the focus off the
patient visit over
a simple correction.
Same goes for everyone
else. I understand
these things take
time to adapt
to, and it's not a
big deal if it takes
some time for the
change to stick.
If anyone has any
questions or concerns
about this, by all
means, feel free to ask.
I can't thank you enough
for your support
thus far.
The next few
months may be a bit
awkward and
vulnerable for me,
but it's also
pretty wonderful.
Admittedly, the
whole experience is
very humbling, and I
appreciate the lens
you've all gone to
to be supportive
and make me feel
safe in all the ways
that count. Not
everyone in my position
is so lucky. You
guys are the best.
Sincerely, Ivan,
formerly Ilya.
Ilia Tamara Vasquez was
my name for 41 years.
And I know it is
not customary for
people in my
position to share the
name that we were
given at birth.
It's generally
associated with a
lot of trauma, a
lot of discomfort,
and a life that we very
much want to
leave behind.
But there's two
reasons why I'm
sharing the name
with you tonight.
Reason number one,
I didn't transition
until I was 41. So
I have all these
memories, some of them
really hard, but a
lot of them really
wonderful, as Ilya.
Ilya made me a mom.
She is my heart, she
is my conscience,
and she is a driving
force behind the
kind of man that I
am trying to become.
And I want to honor her
by speaking her name.
Reason number two, I am
terrified right
this second.
if my voice is breaking
and if my hands are
shaking it is not
stage fright it is fear
that I won't be
accepted because of the
things that I'm going to
share with you tonight
that I might be
ridiculed in ways that I
have been before and
that is intense but
more than anything I am
hopeful that something
I have to say will
resonate with you not
as a transgender man
but as a human being.
And I'm not completely
sure why, but
after thinking about
all that, I just
thought you guys ought
to know that name.
Obviously, it has
not been an easy
road getting to
where I am today.
I'm about three
years into my
medical transition,
and I still
haven't a clue
how to be a man.
I keep trying, and
for the life of me, I
cannot figure out
how to tie a necktie
properly. It comes out
crooked every single
time. It is too dark
in here for me to be
able to tell if any
of you have one on,
but if you do, kudos
for figuring it out.
I have wonderful
friends. I have the
most amazing inner
circle of friends,
and they are
predominantly women.
Strong, amazing,
resilient women, and
I am lucky to have
them in my life.
But I really want a
bromance. It feels
like a rite of
passage that I'm very
attached to, but you
can't exactly go up to
the average guy and
say, hi, I am Ivan.
Cinderella is my
favorite movie.
I'm totally stoked
about The Little
Mermaid. I know
very little about
sports. Will you
be my best friend?
Life does not work
that way. I wish
it did, but it
doesn't. So obviously
there's a lot that
I have to figure
out. I am still
doing way better
than I was doing
in the beginning.
For some reason,
after I first changed
my appearance,
I got it into
my head that the
only way that I
could look handsome
was to walk around,
not smiling,
looking completely
serious, and I thought
that would add up
to manly for me.
In retrospect, I think
I may have gotten
it from the movie
Zoolander, and it
wasn't until I
started getting texts
from concerned co
-workers asking if I was
in some sort of
distress or angry over
something that I
realized it was not
working for me. And
so I, of course,
corrected, and now I
smile all the time.
I am very lucky to have
the co-workers that
I have who were brave
enough to tell me these
things that I really
needed to hear. And I
knew, I knew going
into this that I could
count on support from
my team. I had been
through other really hard,
unusual things before,
and they were there
for me, and I had no
doubt that they were
going to find a way to
be there for me now,
even though this was so
completely removed from
their comfort zone.
Patience, on the other
hand, were a different
story. I wasn't
sure what I could
expect from them, and
I'm the single parent
of a special needs adult,
and so professional
safety was really,
really important.
And in order to keep
myself safe and give
myself a better
chance that passing as
male in the early
stages of my transition,
I decided to do
something that I had
never felt the need
to do outside of a
professional environment.
I started to bind.
Binding involves using
compression clothing
to minimize the more
prominent aspects
of the assigned female
at birth body type.
And it works really,
really well. It did
in fact help me pass
as male, but it also
made it really, really
hard to breathe.
Every time I put one
on, I just felt like
I was breathing
through a straw, and it
was really uncomfortable.
But I thought
to myself, like,
okay, what am I going
to pick here? Am I
going to pick breathing?
Or am I going to keep
myself emotionally
safe, professionally
safe, and
potentially, because
sometimes it's an issue,
physically safe.
And so for me, at
the time, it made
sense to start binding
during work hours.
Thankfully, that
is not something
I feel the need
to do anymore.
And the reason
why I no longer
do it is because
of a really
unexpected
patient encounter.
It happened at the
height of the pandemic.
And if any of you
happen to work in
health care, you
might remember that
we were all, we
were not doing okay.
It was a really
hard time. We were
short-staffed. We
were sad and scared.
And one particular
day, I had had it. If
I had been independently
wealthy, I would
have quit. but that
is not the case.
So I had to find a way
to make things easier
for myself for the
rest of my shift.
So I knew that
the only thing I
could do was to
take off my binder.
I went to the bathroom,
I looked at myself
in the mirror, had
a very heated
conversation with myself.
I used a lot of special
language that I will
not use here tonight,
but if any of you
happen to be Spongebob
SquarePants fans, you
might remember the term
sentence enhancers.
I used a lot of
those as I worked up
the courage to
leave that bathroom
unbound as a visibly
transgender man.
Eventually I did
it. I worked up the
courage. I ripped
off my binder. I
went outside. I
threw it in my locker
and I went on
about my day.
And the next
patient was the
one who completely
redefined the
way I approach
my transition.
It was a young woman,
and her daughter,
the daughter, happened
to be the patient.
And I called them back,
and within minutes
of me getting them
into an exam room, they
had given me so much
information. The
pandemic had hit them
really, really hard.
Job loss, health issues,
some really
interesting family
dynamics that I will
not get into here.
But because she
had shared so much
information about
who they were, I
also had enough
information to know.
This family did not
come from a world
where people like
me are accepted.
So I was ready for
whatever was coming
my way. I think
if you work
healthcare long
enough, you understand
that people are
coming to us in a
really bad place
more often than not.
And generally, they're
not in a place to
give us the best
version of who they are,
but we are committed
to give them the best
version of who we
are. That is something
that I take very
seriously, not just in
my professional life,
but in my personal
life also. And so I was
waiting for something
to go down. But as
I'm moving through
the workup, and I'm
getting ready to put
dilating drops on this
young girl's eyes,
she starts to panic.
She got hysterical.
And then the mom
turns to her and says,
it's okay, honey.
This young man is so
sweet. He is being
so kind. He is
thoughtful. He just wants
to help. He wants
you to get better.
And my jaw dropped.
I was not prepared for
that. I pass really
well now. But back then,
I did not. And I had
just removed the only
article of clothing
that I had that was
helping me to pass. The
only thing that I had
left was my employee
badge, which does say
he, him pronouns. And the
mom did notice that
much had been obvious.
And I I wasn't
ready for respect
at that moment
from that patient,
and it just, it
blew me away.
If you are familiar
with some of the
unfortunate rhetoric
around people like myself,
you might understand
and appreciate why
hearing the words,
he is so kind, he is
so thoughtful, he is
trying to help, would
have affected me the
way that that did.
I left the
room, and I gave
myself a few
minutes to process.
And I thought
to myself, wow,
from this point forward,
if I never put that
thing back on, everyone
that I interact
with will know that a
man could look like me.
And that a man that
looks like me is worthy
of respect. And that
a man that looks like
me might actually be
there to help, to make
you better, to make
a difference, and I
realized there was so
much power in not hiding
and facing the world as
a visibly transgender
man, unbound, and I
wanted that. I wanted
that for me. I wanted
that for my community,
and beyond my community,
I thought about
the benefit to the
patients that we serve.
Sometimes it is my
experiences as a woman
that help me connect
with patients.
Sometimes it is my
experience as Lyft as a
man that helped me
connect with patients.
I don't have the
luxury of time, so I
don't get to tell you
all the complexities
of the interesting
life that I
have had, but I can
tell you that I have
been a daughter, a
sister. I have been
the doting wife.
I've been a mother.
I have survived
homelessness.
I have survived
domestic *****.
A lot of people are
surprised when I talk
about the marriage
that I left behind.
They assume that I
left my marriage to
embrace this life
that I have now, this
beautiful, wonderful
life that I love.
That was not the case.
The last day
that my husband
spent at home with
me and my son,
I had to fight him
off with a broom,
a cheap, surprisingly
sturdy dollar
store broom.
My ex-husband
grew up in a very
unhealthy, traumatizing
environment.
And that added
up to him being
emotionally abusive
when we were younger,
eventually physically
abusive as we got
older, and he was not
safe to be around.
And so my marriage
had to end.
That broom still stands
by my front door.
I've moved a handful
of times since
my marriage ended,
and I will keep
that broom by my front
door for the rest
of my life as long
as it is standing
because it makes
me feel so safe.
And it reminds
me of everything
that I have fought for.
When you've had a life
like that, it
changes you.
At this point,
having lived
through these
things from both the
female and male
perspective,
there's no one
that I can't relate
to. There's no
one that I don't
understand or have
compassion for.
And I thought to
myself, wow, this is
such a helpful tool
in health care.
this is such a great
way of me connecting
to patients and
it's absolutely
worked out that
way for me i've had
grown men sobbing in
my exam chair upon
finding out that
i was transgender
because all of a sudden
they felt like they
could tell me things
that they couldn't
tell anyone else and
that was powerful that
led to better health
care for our patients
and that is something
that i want to continue
it just felt like the
most wonderful gift
the last thing that
i want to say. I want
to read directly from
my notes because I'm
over 40 and I can't
remember things the way
that I would like to
and I was so alert and
it sounded really
catchy when I wrote it
so I want to make sure
that I get it right.
Sometimes in the midst
of hardship and setbacks
if you can look around
and see just one
thing one moment or
one person that you can
see love and beauty
in one thing that lets
you breathe like that
patient encounter did
for me like this moment
is doing for me right
now because this is
actually the first time
I have stood in front
of an audience as a
man. So thank you for
sharing that with me.
It gives you hope
and I hope that
moment finds you
all. Thank you.-
Ivan Vazquez
-
-
Transcription
Hello, everyone. Hi.
My name is Gatti, and
I have dermatomyositis.
Can everybody say
that with me, please?
Dermatomyositis.
I know. I know.
It's a struggle, and
it's also a struggle
to go through.
This is my story.
In May of 2015, I
went on a run with
my brother, and
afterwards, my arms
started to hurt and
so did my thighs.
I actually had an
event to go to the
next day and I had
to cancel it because
I was very sore
and I was tired.
And as the days went
on, weeks went on,
it started to hurt.
I was more fatigued.
I couldn't really
get out of bed.
It started to
become a Herculean
effort to go
from my parked
car to my
university classes.
I just didn't know
what was happening. I
was in and out of ER,
like emergency rooms.
A lot of the doctors
would be testing
me from Lyme disease
or muscle dystrophy.
They even took a muscle
biopsy to see
what's going on.
And as many of you
may know that along
the road to a
diagnosis can be long
and arduous, and mine
was no different.
I was getting weaker
and weaker. I couldn't
lift my arms to
brush my hair or just
play the piano, which
is right here, right?
And soon I was taken
with my family to Peru
to see some specialists
there, and when
I came back, I was no
longer able to walk.
It came to a point
that it also got really
tiresome to chew. It's
because my esophagus
was getting weaker, so
I couldn't eat a lot.
I still remember the
day that I couldn't
swallow anymore. I was
very thirsty, so I asked
a family member to
give me a cup of water.
And as I took it, I
immediately
started choking,
coughing, and
I started to tear
up because I was
so thirsty. I
felt like my heart
was about to come
out of my chest.
In a frenzy, I
was taken again to
the emergency
room. They inserted
a feeding tube
and took me up to
the University
of Utah Hospital.
And it was there
that I was diagnosed
with dermatomyositis,
which is an
autoimmune disease
in which a muscle
inflammatory disease
that essentially
the immune system
attacks my muscles.
I was given so
many treatments,
steroids immediately
put into therapy,
occupational therapy,
physical therapy. I was
also given one of those
wonderful hospital
room ****. You know
what I'm talking about?
The ones you take
as a souvenir when
you get home. You know
what I'm talking about?
You know what I'm
talking about? Yeah.
So I was given
those and I did
not use it to
drink. Oh no.
Because my esophagus was
weak and I
couldn't swallow.
I also couldn't
swallow my spit. Now
this is something
that I didn't know
but we're constantly
swallowing like
subconsciously and
since I couldn't
do it I had to
spit into this jug.
I know, so gross, but
it was my reality,
and I couldn't
sleep because of it.
I really quickly started
going into a dark place.
I remember that they
had to insert a PICC
line in me on this side
because it was going
to be a prolonged
stay at the hospital.
And the day that
they were trying
to insert it,
they couldn't
find a vein. I
know it happens.
and I was just
standing there almost
facing out and I
looked up and I saw my
mom across the hospital
room and she was
bawling which made
me cry and I didn't
want her to see me
like this so I asked
for the health care
team to usher her
out of the room but
she wouldn't budge
and so we're both
there just crying and
of course yes it hurt
but because of them
trying to find a vain
but it and also this
wasn't the first
time we have been
overwhelmed with this
entire ordeal it was more
than that you know
her and I we locked
eyes and we were
connected and we started
to reminisce on everything
that has happened
since this started
her and I have lost
our jobs I stopped
going to school I could
not help in informal
translating or
interpreting in medical
settings as I usually
do because I was the
patient this time.
We both couldn't sleep.
My whole family has
gone through a lot
with this ordeal, and
in the future months
that would come, we
would eventually lose
our house because of
the stacked medical
bills that would come.
My mental health
was deteriorating,
and I knew I
had to leave.
So we asked the
medical team to
see if there was
a way to do this
at home, and they
highly advised
against it. They
said, and I quote,
that I have everything
I need here, and
if I were to go home,
that it would cause
irreparable mental
damage, end quote.
I understand where
they're coming from,
their expertise and
their experience.
They want what's
best for the patient.
and not but and I
would want them to also
trust me as the patient
the patient being
part of the health
care team knowing that
this is something
that at least for me
I needed this I needed
to go home and so
with that we worked
something out and I was
able to get care and
recuperate at home
now it wasn't easy
okay my family my
community really came
together to help me
the following months
to continue the
therapy I would
practice on teaspoons of
water and because I
fear aspirating and so
did everybody else
around me it would
do really slowly I
would also practice
with applesauce and
bananas and now that
I'm in remission if
you're wondering if I
eat applesauce and
banana to this day?
Rarely.
I am so sick of
applesauce and banana,
so you can imagine
how it was, like,
teaching my kids solids,
okay? I'm like, yes,
applesauce, so good.
Yeah, you can do it.
And I also
would get a lot
of comments on
my body, too.
Wow,
you look so good. Wow,
you're looking
really skinny.
Hey, at least
you look good.
and you know to
combat the notion that
thinness equates
to optimum health i
did it the only way
i know how which is
sarcasm so i said
thank you it's the
feeding tube diet i
highly recommend it
and i'm not saying
that i prefer my body
one way or the other
absolutely not but i
am just an awe of
what my body has gone
through medically
through this autoimmune
disease the birthing to
children since i know
there's there's some
things that i still
can't do things just
don't bend certain
ways i'm still recuperating
in a lot of ways
but i honor her still
because my body is
a wonder and your
body is also a wonder.
I want to appreciate
and celebrate every
season, every size,
every reason and
I know that as the
years go by it will
also just keep on
changing and evolving.
I am still in shock
of the day that I
officially was able
to swallow again.
It was later into that
year and by that time
I could take a couple
of steps and my
speech therapist was
saying okay it seems like
we're good to get an
official testing done
let's do it. We're
going to go ahead and
bring the the test to
your house and I said
okay I don't know what
that looks like so
he said it's just
outside so my brother
helped me out and walked
me to the door and
outside of my house
and there was the big
black van I had no
idea that you could do
this so this is all
new to me and they said
the machine is inside
so I went inside and
there was other health
care professionals
there as well and I
sat down they gave me
some water and they
also gave me, yes, some
banana. So I ate a
little bit of that. And
I saw the machine on
my side and I could
see it go down. I was
like, oh, okay, yes, I
can definitely do this.
And then one of the
healthcare professionals
gave me a pill.
It was this big. And I
know from where you're
sitting, it probably
doesn't look that
big, but for somebody
who hasn't been able
to eat for a while
or swallow. It was
ginormous. And I looked
at the healthcare
professionals and I said,
do any of you know the
Heimlich? Because
you're going to need it.
Also,
why don't we delay
this? I would love to
welcome you back another
day because I definitely
don't want to do
this. I was so scared.
And I grabbed some water.
I looked at the machine
and I attempted
to swallow
and I went down.
I didn't choke.
I didn't cough.
I was able to do
it fully. I was so
impressed with myself.
I was just in shock.
My speech therapist
looked at me and said,
yes, Kathy, you did it.
How do you feel?
And I literally had
no words. I was just
sitting there just
just in awe of what
I was able to do
that I wasn't able
to do for so long.
And he said, well,
now that you could
do that, what do
you want to eat or
drink? I know most
of my patients
actually ask for a Diet
Coke. Do you want
that? And I said,
no, I want a Slurpee.
Thank you.-
Katty Youd
-
-
Transcription
It was August of 2022,
just about 10 months ago.
My husband, Mike, my 13
-year-old daughter, Kiera,
and nine-year-old
son, Tristan, were
in Costa Rica
celebrating my
graduation from the
University of Utah
Doctor of Nurse
Practice Program.
I was a nurse
practitioner.
We had spent many
family vacations at
the beach. and on
this vacation, we
were at Manuel
Antonio National Park.
I had grown up in Hawaii
on the north
shore of Oahu.
Mike and the kids
and I had spent our
vacations playing in
the waves and diving
under the waves at
Pounder's Beach in Laie,
diving off the
lava rock into
Waimea Bay or
swimming at the beach
across from my
parents' house,
the house that I
had grown up with in
Punalu'u. And now
we were at the beach
in Costa Rica,
enjoying the waves.
The skies were gray,
but the weather
was warm. We were
having a great day.
Smiles all around,
salt on our lips.
We were having a
contest to see who could
body surf the
farthest up the beach.
So in body
surfing, you don't
need any equipment.
It's just your
body gliding
through the waves.
Mike took the
next wave in while
the kids and I
dove under it.
We got up and
turned around to see
how far Daddy made
it up the beach.
Sure, he was trying
to win the contest
and to get farthest
up the shore.
It took a while
for Mike to
pop up, but
then we saw him.
His head popped up
out of the water,
but suddenly
his head went
immediately back
down under the waves.
Something was wrong.
The kids and
I ran through
the shore break to Mike.
He was tossing
and turning in
the waves. He
could not move.
The kids and I
pulled his body
through the
shore break onto
the shore
screaming for help.
We got to the shore
and Mike mouths,
I can't breathe.
In all my years
training as a nurse and
as a nurse
practitioner, I'd gone
through many first
aid and CPR trainings.
We learn what to do
if a patient is having
a code or if you're
out in the community
and you see someone
who needs help.
But never once was
the scenario it was
your husband who
couldn't breathe with
your two kids watching
just feet away.
Mike couldn't breathe.
I provided
rescue breathing
for Mike for 35 minutes.
finally finally the
emergency
services arrived
in the course of
five days we were in
three different
costa rican hospitals
my medical training
had taught me enough
that mike's injuries
were serious but i was
also incredibly hopeful
mike's a fighter on
the fifth day we finally
made it back to utah
via air ambulance to
the University of Utah
Hospital and the
Neurocritical Care Unit.
The day after we
arrived back in Utah, we
had a meeting with
Mike's medical providers.
In that meeting, my worst
fears were confirmed.
Mike had suffered a
severe spinal
cord injury.
He was now paralyzed,
a quadriplegic.
He was on a
ventilator as he
was unable to
breathe, and he
had a severe case
of pneumonia.
On Mike's last day,
exactly a week
after his injury,
there were no final
breaths, there were
no last breaths to
take. He couldn't.
There were only final
beats of his heart.
I had promised
Mike that he
wouldn't be
alone, and I had
promised the kids,
and he wasn't.
By his side I lay,
just Mike and I.
He was finally at peace,
no more hungering
for air.
His body was being freed,
free as a bird,
free bird, his
favorite song.
It was our last
cuddle and our
last embrace as
death did us part.
I had walked into
that hospital a
wife, and I was
leaving a widow.
I was truly at
a total loss,
wondering how
would I, how would
the kids, how would
we ever be okay?
How would we ever
move forward in life?
in the months since
mike has died i have
gone to a lot of grief
and trauma counseling
and one of the things
that i've learned
about are grief
bursts and grief
bursts are sudden
bursts of emotion
that may occur
unexpectedly or in response
to a special
memory or situation
I experience a
lot of these.
But one thing I
know, although these
outbursts of emotion
are physically taxing
and mentally taxing,
they also give me
an opportunity to
feel a little better.
A few months after
Mike died, I was at
the gym, exercising
and lifting weights.
It had actually been
a pretty good day. I
went to the grocery
store, I took out the
trash, and I exercised
all in the same day,
which was something
that would have been
really difficult to
do just weeks before.
I was listening to
my 90s R&B Spotify
playlist when a Mariah
Carey song comes on.
We belong together,
a love song.
the tears start streaming
from my eyes and
staining the black
gym floor i quickly
sit down on the weight
bench and i look
around to see has anyone
noticed my outburst
i try and turn off
the song and finally i
quiet mariah and in
that moment i have
two choices first
choice i quickly gather
all my things up race
out of the gym go into
my car turn mariah
up really loud and
just cry and feel my
sorrow in the moment.
Or I could stay,
finish my workout,
go back to feeling
the burn in my
biceps, knowing
I'll feel a little
bit better if I
finish the workout.
And on that day,
I decide to stay.
But no more 90s R
&B and Mariah Carey.
It's time for
some 90s rap,
all right? And
the sounds of Ice
Cube, today was a
good day to take
me through the
rest of my workout.
On another occasion,
just about three
months ago, I had
the opportunity
to interview for
a teaching job
at the U in the
Department of Health
and Kinesiology.
As part of the interview,
I was to give a
presentation in a
functional anatomy course
to a group of
undergraduate students.
As luck or misfortune
would have it,
the topic of my
presentation for the week
that I chose was
the spine and trunk.
Okay, so I prepare
my presentation.
Before I give
my presentation,
a friend agrees
to meet me in
the lecture hall
to practice.
On that day, I walk
into the classroom
door and again the
tears start to fall.
I can't believe I have
to present on the spine.
I can't believe that
my husband is dead.
I am so tired
and I just want life
to be normal again.
And on that day,
I choose to feel
all my feelings,
to be sad, to
feel my grief, to
feel my sorrow.
Exactly a week
later, I returned to
the same classroom to
give my presentation
to about 50
undergraduate students
as well as faculty
in the department.
And on that day,
I'm excited.
I feel confident.
And I did not, thank
goodness, shed
a single tear.
because I had given
my chance to feel
my sorrow and my
pain and feel all
the feels the week
before I had given
myself an opportunity
to have a good
day and in case you
were wondering I
was offered the job.
And I accept it.
Oh, yes. Thank you.
So in the months
since Mike has died,
life has been
really hard.
Nothing that could
have prepared
me for what
it's been like
to go through Mike's
injury, his death,
our grieving process. The
kids and I have
had a lot of firsts
these last few
months without Mike.
First days of school,
first rock climbing
competition,
first baseball games,
holidays,
and we still have a
few more firsts to go.
First Father's Day.
Mike's 50th birthday
the anniversary
of his death
but despite our grief
and despite how hard
this is I stand before
you today and my kids
sit amongst you today
and we are doing okay
we have been surrounded
by the love and
support of so many
people that care for us
we go to counseling
I drag the kids on
long walks and hikes
and we remember
that we have so
much to live for
there's so much
that we want to
accomplish in life
and Mike would tell us
to follow our passions
and he'd tell us to
go big to send it
there's one thing
that my son has said
to me that still
resonates with me.
One day he said,
Mom, I can't believe
that everyone,
everyone in the whole
world will lose
someone that they
love, and this is
what it'll feel
like. This is what
they'll go through.
But I want you to know,
when it's your
turn to lose
someone that you
care about deeply,
you too, you will
learn to be okay,
and you too will
have good days.
Thank you.-
Kerry Magiske
-
-
Transcription
So, I started my nursing
career in the
surgical ICU,
and I knew from second
semester in nursing
school that SICU is
where I wanted to work.
I fell in love with
how fast-paced it
was, that it was
protocol-based, and I
could use my critical
thinking skills.
And I loved that we made
the impossible possible.
It's pretty incredible
the things we
do at the bedside to
keep people alive.
Things like opening
bellies, opening chests,
even dry icing
a patient's leg.
I could stand up
here for hours
telling you stories
about the life of
an ICU nurse, but
they only gave me
10 minutes. So I
decided I was going
to let you in on
a little secret.
There is a haunted
room in SICU.
things that can't be
explained like call
lights going off when
there isn't a patient
in the room now I'm
not here to discuss
if ghosts are real
or not but what I can
tell you is that
ghost stories are real
um excuse me I wanted
to share with you a
few ghost stories real
life ghost stories that
happened to me when
I was a bedside nurse
my first ghost story
is a patient that we
admitted who had an
internal defibrillator.
He had a history
of V-fib, and
the defibrillator
would shock him
out of this
unsurvivable rhythm.
However, on this day,
he was going back
into this rhythm, and
so he was being shocked
over and over. The
medical team told him
what his options were,
what the treatments
could be, and he
decided that he had
lived a long life at
96 years old, and that
he just wanted to turn
off his defibrillator
and go happily with
his family around.
So his family and
his cute 86-year
-old girlfriend comes
to the hospital,
and they had a party in
his room. They really
celebrated his life.
They told stories.
They laughed. They
had non-****** drinks.
His girlfriend
even crawled
into bed and
snuggled with him.
When the party
was over, the team
came in, and we told
him that we were
going to turn off
the defibrillator,
that he would stay
in this unsurvivable
rhythm and
eventually pass away.
After he flatlined
and the doctor
declared him dead,
we gave family
their time to say
their goodbyes.
And when they were done,
they were gathering
up their things and
the patient opens
his eyes and he
says, is this heaven?
And then he sees
the nurse and says,
you said I was
supposed to die.
we were shocked.
He came back with
a heart rate of
20 with a very low
blood pressure.
For those that
don't know,
people don't survive
with a heart rate
of 20 and a low
blood pressure, but
this patient did. He
actually survived for
two more days before
he passed away.
My ghost story
number two is a young
trauma patient
that we admitted.
He was in a really
bad car accident,
and he had a pretty
significant code.
We did chest
compressions on him for a
long time, and there
was actually a period
of time that we could
not oxygenate him.
He had turned as
blue as our scrubs.
The team even questioned
if we should keep
going because we knew
the longer we went,
the worse outcomes
that he would have
due to not having
oxygen to his brain.
But we decided he
was young, and we
needed to do
everything we could.
And we did. we resuscitated
him and stabilized
him. Now he was on
full life support, and
we realized that our
worst fear came true.
He was not responding
to any stimulus,
including pain. He did
have a pretty bad brain
injury from not having
oxygen to his brain.
So four days later,
we were shocked when
we heard knocking
coming from his room.
We walk in. Now, he
has a breathing tube
in, so he can't talk,
and he's restrained,
but he had been
knocking on his bedside
rail, and he gestured
that he wanted to
write. We gave him a
clipboard and a piece
of paper, and he wrote
down, I saw my dad.
We kind of brushed
that off and said,
okay, yeah, but you
were in this terrible
car accident. You're
in the ICU, and
we eventually get
that breathing tube
out, and he points
to the doctor, and he
says, you were the
one that said I was
going to be toast,
which is exactly what
the doctor had said
during the code.
The patient went on
to tell us that he
had this entire out
-of-body experience.
He said that he
was above his
body during the
code, and he told
us everything
that happened.
Then he said he
was ****** into
the waiting room where he
saw his wife and
grieving kids,
and then he saw his
dad over in the corner
and he said he was so
excited to see his dad
because he had passed
away years before.
He went over to give
his dad a hug and
his dad stopped him
and he said, no, it is
not your time yet.
You have to go back.
At which time he
said he was back in
his room and he got
back into his body.
I want to introduce
you to my third
ghost story. It
was a night shift.
I admitted a patient
into room four.
Now, to protect their
privacy, I have changed
their names, so we'll
call this patient
D. I get him set up on
the monitors. We get
him kind of tucked
in for the night, and
I'm out at the nurse's
station with some fellow
co-workers, and I
hear mumbling coming
from the room, and I
walk in, and I say, D,
what are you doing?
Who are you talking to.
And he points to
the wall and he
says, I'm talking
to Roy Smith.
Now, Dee and I are the
only people in this room.
And I feel the
hairs on my arms and
the back of my neck
stand straight up
because Roy Smith,
the person that Dee
is talking to, was
the patient who
had passed away in
that room hours before
we admitted Dee.
I walked out of
the room and I told
my co-workers,
you are never are
going to believe
what happened.
Now, I can't explain
what happened
during these ghost
stories that I've
shared with you,
but I know they've
happened, and they
sure make me wonder.
Thank you.-
Liz McLaughlin
-
-
Transcription
I haven't watched all
the Mission Impossible
movies, but I was
like, you know,
my job is kind of like
Mission Impossible,
so I think it would be
kind of interesting.
So, I did see the
last one though.
I am going to tell
you a birth story, but
the first thing that I
want you to know about
me is that I love my
only child, and I have
absolutely no regrets
whatsoever. However,
so as someone who
designs for a living
as a fashion designer,
it only made sense
for me to design
my own personal
preservation plan before
my child and I met.
So I had been seven
years into my marriage
and living in New York
City with roommates
when I found out that
my ovaries worked.
and I was really
surprised I was very
shocked to find out
that I was pregnant and
I know that sounds a
little bit complicated
and you know it kind
of was because my
husband was living
here in Utah and we
would he was actually
going to university
here and we'd go back
and forth and visit
each other every so
often but ultimately
I refused to leave
my New York career.
And if there's anything
that working in
corporate fashion in
New York City taught me,
it was that the first
design of my self
-preservation plan was
going to be my silence.
I know, it's so
sad that I had to
come to that
conclusion, but that
was the circumstance
that I was in.
So looking back into
it, I, you know, did
not know how to really
move forward in this
situation that I had
ended up in. And I was
happy about it, but I
also knew I had to be
smart about it too in
the position I was in.
So what I ended up
doing was figuring out
a way that I could
really keep a good head
on my shoulders and
still like be really
good at what I do but
all under the radar.
So my pregnancy
was going to be
on a need-to
-know basis and my
employer did not
need to know.
So I marked down five
months on my calendar
where my pregnancy
just needed to be
completely undetected.
And my goodness, did
it pay off. Because let
me tell you that when
my employer found out
that I was expecting,
my boss, who was a
woman at the time,
took, unfortunately,
took the
opportunity to
completely berate me,
personally attack
me about how
little I must care
about my career.
And it's almost as
if I saw that coming
the entire time,
which is completely
why I concealed it.
But alas, my self
-preservation plan,
the corporate edition,
was an ultimate success.
So after I left New
York and came here in
Utah, I was probably
about six months along at
that point and no
longer working but I
remember just it dawning
on me I had just been
so used to concealing
every aspect of my
pregnancy like mentally
that I was like oh my gosh
I'm pregnant and there's
like a baby who's
going to be coming
really soon and so even
though my mind had not
caught up with my body
I was like okay this
is really happening.
So as a designer what
we do is we'll design
with the materials
provided to us and so I
quickly found out
that I would not be
designing with health
insurance or a traditional
hospital because every
place that I would
call could not give
me a quote on how much
this whole birthing a
human thing costs and
that was really confusing
and surprising to
me at the same time.
So I was trying to get
creative with what I
was going to do. And
I thought back to all
of my prenatal health
checkups in New York and
all of my examinations.
And each time I
came back with a
really clean bill of
health. So I was like,
okay, well, what if, I
mean, there's this whole
like thing for, you
know, at home births
or birthing centers,
maybe I should try that.
Maybe I should figure
that out because
they would quote me
what the costs would be.
And so I decided
to move forward in
that direction and
ultimately chose
a birthing center
out in Lehigh.
And so I'm probably
about a month along at
this point, and I'm
really just starting to
worry about like my
whole plan to begin
with and just how I'm
going to proceed. And
so thinking about it,
you know, as a Navajo
woman, I know that
American Indian and Alaska
Native women are two
times more likely to
die as a result of
pregnancy-related causes.
So that really started
to freak me out.
And that statistic is
based in comparison
to white women. and my
grandmother who I never
met had actually
died on the Navajo
reservation during
childbirth so this to me was
not just another statistic
this was my family
history and so I
became more concerned
about you know making
sure that all of my
records were in one
binder in my home and that
my house was in order
in the event that I
would not be making it
back and so there was
no me like purchasing
like child stuff I
think I was delaying
a lot of things almost
refusing to recognize
this is really still
happening and I was
really lucky that I
actually bought a car
seat three days before my
child was born so
luckily I got that down
and I just remember
laughing so hard to
myself at four in the
morning the day after
Labor Day because my
water had broken and
I had this running
joke that it would be
so hilarious if I were
to go into labor on
Labor Day and I was
only wrong by four hours
and technically it
was like two weeks
early, which that's
why it was a joke. It
wasn't supposed to
happen, so that was really
hilarious, but I
will say that it is
remarkable what it felt
like and what I went
through to give birth
to a human, and I
mean that in the most
painful way possible.
yep i felt everything
um so i it was really
interesting to see
that my my instinct and
my personality was
intact the entire time
down to when my son
finally made his way out
and the nurse hands him
to me with congratulations
and I just grabbed
him and handed him
to his dad because I
was not anywhere near
like physically or
mentally ready to meet
this new human. I from
my research knew there
was still so much
that had to happen. I
knew that this was just
the first birth and
technically I would
have to be assisted in
birthing my placenta and
of course every human's
nightmare and designer
a tear and we're
not talking about fabric
here yes it happens
so as I watched the
nurse thread the needle
in true fashion I
just stopped her and I
just thought you know
okay I'm totally at
her mercy but I have
to ask her um what is
your experience with sewing
and and she responded
back that she had
experience with quilting
to which I was you
know pretty satisfied
because if you know
the women who quilts
they know how to put a
pattern back together
so after that
portion was like done
I felt ready to meet
my my son who was
very quietly waiting
with his dad.
And I remember there
was just like no
tears. There were
no like dramatics.
It was just, I looked
at him with just
complete wonder.
And it was mostly
like, wow, what the
heck just happened?
It was nothing
like what I had
expected. You see,
I had this really
romanticized idea of
what this moment would
be like and this
romanticized idea of what
it would mean in this
moment to be a mother
who just gave birth
and I realized that
leading up to all of
this it was not at all
what I had been told
it would be like or how
it would feel like and
I think that was some
of the most amazing
teaching moments that
I had in that time of
just like everything
dawning on me of like
oh you know it unfolded
this way but you know
what that's okay and
so from there I started
to think a little
bit deeper about all of
what I had gone through
leading up to this
and I realized that
I also just did not I
did not plan for this
part of my like self
-preservation like this
whole part and in those
moments looking at
him I acknowledged that
this was some of the
hardest moments of my
life that I had gone
through and it was
mentally taxing It was
some of the most lonely
times that I ever had
in my life, and it
left me feeling more
empty than full looking
back at it, but I am
so grateful that I
allowed myself to even
just feel that without
assigning it any kind
of guilt or shame, that
I just allowed myself
to go through that
and not feel bad about
it the way that it
unfolded. And I feel
like even though my
birth story was a very
unromanticized version,
despite what I had been
told by society or my
previous religion or
anything like that,
that it was okay. And
that ultimately I
learned that, you know,
motherhood is wonderful,
although I don't think
it was completely
my destiny. And even
though it happened, I'm
still a mom. I'm still
navigating this thing
called parenthood.
And ultimately, I found
that my worth is just
not defined by my
ability to procreate or
not. It comes in so
many different ways, and
I noticed that my
worth is really more
defined by my collective
choices in life,
ultimately, and I was
really just happy and proud
about that, and it
was such a wild ride.
Even though it was
all difficult, I feel
it was ultimately
a success, even
though I came from
it at a completely
different angle than
what I was expecting.
And I love my son
and I'm really
grateful for him
and for all that I
had learned from
this experience.
However,
I will not be
doing that again.
Thank you.-
Michelle Brown
-
Transcription
Good evening, and
thank you for coming
to share with us
this evening, me
and seven other
fellow storytellers.
My name is Perry Montoya,
and this is my story.
It's long been
believed that
all salmon, after
being hatched,
will leave the
place of their birth
and upon an epic
journey work their way
down streams and
rivers to the ocean.
It's also been
long believed that
they only return
to that very spot
once and only
once to ultimately
spawn and then lay
down their lives
and die in that
very location.
though rare there
is a fish a salmon
that actually makes
that journey back
and forward again
and again and
again from the ocean
back to the headwaters
that salmon is
known as a celt
salmon perhaps are
very intrigued and
interested in those
waterways because yes
it's the place of
their origin but also
surely they have to
determine that the
chances for their
offspring to have a
fighting chance will
be better if they
can go back to where
they began as well.
I've lived in 40 homes
and 52 years of life.
And yet, each time,
I keep coming back
to this location. And
I'll share with you
throughout my story
this very location.
I'm the first of,
sorry, I'm the fourth of
four children. I
believe my siblings may
be in the audience
with us tonight. night.
My father was a Navy
man in our first
home after I was
born in LDS Hospital,
Fort Douglas, about
a thousand yards
from where we now
gather tonight.
And so, this being my home
waters, my headwaters,
if you will, four
or five times during
my lifetime, I've been
brought back to these
my headwaters in my
personal and professional
life. And I can't
help but wonder why.
What imprint upon my
soul is bringing me back
to this location my
parents as I mentioned
my father in the navy
my mom ultimately a
travel agent that meant
that we were somewhat
the livestock and they
were the nomads right
maybe not so much
but we did gain their
wanderlust and so I've
traveled the world over
as a tour guide as a
travel writer and I love
people and places from
all over the world
and truly those who know
me would know I'd be
happy to live in any
one of those locations
So why here?
Why now?
Why am I brought back to
this place,
my headwaters?
Maybe if I take you
back a little ways,
in the early 80s,
after having made some
moves, indeed,
previous to that, my
family had moved to,
ironically, the ocean,
Washington State,
Southern California,
Northern California.
I spent time in
Texas, each of those,
very near the ocean.
after having made those
travels in my early
professional life in
19 actually before
that in my young life
in the 1980s I came back
to this very campus
time and time again as
a young debater who at
that time would come
to the library that's
not very far from
here I can still smell
the books I can still
see the microfilm
sorry that makes me old
I know but I can work
through those and I
can remember that this
campus holds a place
in my heart so was I
supposed to come back
to these headwaters
for all things academic
for me, for my own
knowledge and learning?
No, in the early
1990s, I found myself
in a career as a
medical and marketing
and sales individual.
That brought me back
to this campus yet
again because the
University of Utah
healthcare system was
my predominant client.
So, was I brought
back for all things
success and finance?
After all, as a young
20-something, I'd
made some money here,
and maybe money was
the reason why I was
supposed to come back
here, maybe success.
It didn't take
long for me to
realize that
wasn't the case.
At some point,
I tired of the
business world, or
probably more so
of insurance companies
and contracts,
if you know,
you know, right?
And in the late
90s, I determined
it was time to
move forward,
to do something
different.
Not very far from
here, on a side
stream, if you
will, Westminster
College was the place
where I'd get my
undergrad degree,
and then pursue
religious education
as a career, leaving
the business world.
The best place for that
to happen was here on
the south end of campus
at the Salt Lake
Institute of Religion.
And so, some 26 years
ago, I entered their
doors and became a
teacher. They hired me.
Upon being hired, I
dove back into, if
you will, another
yet deep ocean of
academia and learning,
and I pursued a
master's degree. Where
would be the right
place for me to
land? You can guess.
here at the
University of Utah
for a master's
in education.
Interestingly enough,
I accepted my degree
on this stage in about
10 minutes, not 10
minutes, 10 steps from
where I now stand.
I was asked to be
the student speaker
for graduation, where
I said, the student
first and always,
which I still believe,
by the way, in my
professional life.
So, was my return
to this location
to be for all
things educational?
Was it supposed
to be the message
of that education
at all costs?
It seems like recently,
things have been
speeding up in my
returns. Indeed, about
a year ago, my wife
and I were asked
to come here and to
help be administrators
and teachers for
an inaugural youth
conference for spiritual
learning for 14
to 18-year-olds held
on this campus and
in many campuses
throughout the world.
Not long after
that, I was asked
also to return
back to this campus
and at the same place
that actually gave me
a job, the Salt Lake
Institute of Religion,
to return and now
teach the older
age kids, the
college age kids,
and have an
experience with them.
So is my return
to these my
headwaters for all
things educational,
for an opportunity
to continue to move
forward and now in a
spiritual education
versus the
educational side I
mentioned of just
having been a teacher?
within one week
after being given and
accepted the position
to come here and teach
i was diagnosed with
a serious illness
remember kelts are
rare my rare illness is
known as sarcoidosis
given the job on november
29th diagnosed on
december 1st i'll
spare you all details
that you might not want
to know about sarcoidosis
like the medical
dictionary version or
maybe the CPT codes
or in what the
insurances will pay for,
but I will tell you
what it means to me.
What sarcoidosis has
meant for me is I stand
before you with
innumerable nodules in
my lungs, mimicking
cancer but not cancer.
I stand before you
with those same nodules
in my lymph nodes and
in other locations
in my body that I'm
uncertain of right
now what does that
even look like I stand
before you wondering
having questions that
are unanswered I
stand before you with
what it means to me
of in those unanswered
questions even some
physicians one saying
to me hey sorry it's
not cancer because
the money really goes
there for research
and so it'd be better
maybe if it were that
you can laugh at
that I thought it was
laughable I thought
how in the world right
it means for me
untold numbers of
people that have given
so much to me and
my family of time
and efforts and
finance and in so
many ways reaching out
to us and knowing
I can never repay
and also knowing
that it's impossible
to answer to those
people the simple
question how are you
doing today because
some days it's just
the same as it's always
been for the last
six months. Other
days, the symptoms
are flaring, and it's
too much to explain
which one and why.
Some days, it's
good, and if I say
it's good, then what
happens the next
day of what I thought
you were good?
What sarcoidosis has
meant to me is that
in the seeking of
answers to questions,
I can't just go
to any doctor.
Because of the rarity,
I'm being referred
to referrals by
referrals at this point.
Indeed, in the next
couple of weeks,
in some weird form
of excitement,
I'm getting
excited to go to a
national hospital
in two weeks
to try and get
some answers.
That's a stream I
didn't know I was going
to swim down, nor be
excited to swim down.
Sarcoidosis is
also meant for me a
love and a trust and
a care for people.
I've lacked in some
ways what some of
us are pretty well
used to. If you have
back pain, and
someone says, oh, my
mom had back pain,
and she, or they say,
well, when I had
back pain, I took,
I don't have those
abilities right now
because it's
something that most
folks don't know
a lot about.
The irony in all of
it, and what halts
the isolation in my
swim, if you will,
it's you. It's
that we're here
tonight together
because I know
you've swam a
solo swim before.
Yours is different
than mine, but
me having shared
mine tonight in
some way unites us
together and we're
swimming together
in the process.
While I don't know
entirely what's next,
while I can't answer
the question of
why the swim, why the
return to this location
over and over
again, even on this
stage at this moment,
what I can say is
this, I am enjoying
the experience of
knowing you're swimming
your swim as well.
Maybe in closing the
thought of this, if
the answers aren't
to be found quickly,
then where am I to find
answers to my story?
Maybe like you, I
look to those that
I swam with for as
long as I've swam.
My sweet wife endured
our 30th anniversary
was the day that I
was diagnosed, so
she's endured that
and many other things
and is noticeably
rocked. My children
have experienced this
in a hard way, and
their spouses and
significant others.
But they've also seen
me vital and strong,
like you see me tonight,
and I want to feel
that way in my life.
I want to be who I
need to be, but I also
know that salmon swim
back to headwaters
for their offspring.
So I consulted
the offspring and
gave them a little
version of my
story, and here were
their responses.
My youngest son
said, who by the way
currently is in his
faraway ocean location
of London, and has
been throughout
this entire spot,
serving a mission
for his God, returning
home this month.
Here's what the youngest
said. He said, Dad,
you lose the
wonder if you
just continue in wonder.
Sweetly, my oldest
daughter said the words,
Dad, perhaps it's
in your story
the why we are
here for all of us,
and we need to learn.
And I believe she's
right. I've never felt
to lay down in the ocean
and die there, nor to
pursue the headwaters
and never return
back to the ocean. I
want to go back and
forth and back and forth.
Perhaps the hardest
one came from my
middle son, because
it was a compliment,
and those are
hard to take, who
said, I'm grateful
that my dad's not
swimming some one last
crazy swim as fast
as he can trying
to get things done.
His life has
been the swim
that he was
meant to swim.
I don't know the answers.
I don't need to
know all of them.
But I do know that
the experience of
being with you,
with friends, with
family, with seven
other gifted individuals
who I hope you'll
listen to tonight
and be a changed
person from listening
to them, I am from
having done so.
It's the journey
that's truly mattered.
So while I can't
give those answers, I
will say to you, from
one Celt to the next,
enjoy the journey.
Thank you.
thank you for coming
to share with us
this evening, me
and seven other
fellow storytellers.
My name is Perry Montoya,
and this is my story.
It's long been
believed that
all salmon, after
being hatched,
will leave the
place of their birth
and upon an epic
journey work their way
down streams and
rivers to the ocean.
It's also been
long believed that
they only return
to that very spot
once and only
once to ultimately
spawn and then lay
down their lives
and die in that
very location.
though rare there
is a fish a salmon
that actually makes
that journey back
and forward again
and again and
again from the ocean
back to the headwaters
that salmon is
known as a celt
salmon perhaps are
very intrigued and
interested in those
waterways because yes
it's the place of
their origin but also
surely they have to
determine that the
chances for their
offspring to have a
fighting chance will
be better if they
can go back to where
they began as well.
I've lived in 40 homes
and 52 years of life.
And yet, each time,
I keep coming back
to this location. And
I'll share with you
throughout my story
this very location.
I'm the first of,
sorry, I'm the fourth of
four children. I
believe my siblings may
be in the audience
with us tonight. night.
My father was a Navy
man in our first
home after I was
born in LDS Hospital,
Fort Douglas, about
a thousand yards
from where we now
gather tonight.
And so, this being my home
waters, my headwaters,
if you will, four
or five times during
my lifetime, I've been
brought back to these
my headwaters in my
personal and professional
life. And I can't
help but wonder why.
What imprint upon my
soul is bringing me back
to this location my
parents as I mentioned
my father in the navy
my mom ultimately a
travel agent that meant
that we were somewhat
the livestock and they
were the nomads right
maybe not so much
but we did gain their
wanderlust and so I've
traveled the world over
as a tour guide as a
travel writer and I love
people and places from
all over the world
and truly those who know
me would know I'd be
happy to live in any
one of those locations
So why here?
Why now?
Why am I brought back to
this place,
my headwaters?
Maybe if I take you
back a little ways,
in the early 80s,
after having made some
moves, indeed,
previous to that, my
family had moved to,
ironically, the ocean,
Washington State,
Southern California,
Northern California.
I spent time in
Texas, each of those,
very near the ocean.
after having made those
travels in my early
professional life in
19 actually before
that in my young life
in the 1980s I came back
to this very campus
time and time again as
a young debater who at
that time would come
to the library that's
not very far from
here I can still smell
the books I can still
see the microfilm
sorry that makes me old
I know but I can work
through those and I
can remember that this
campus holds a place
in my heart so was I
supposed to come back
to these headwaters
for all things academic
for me, for my own
knowledge and learning?
No, in the early
1990s, I found myself
in a career as a
medical and marketing
and sales individual.
That brought me back
to this campus yet
again because the
University of Utah
healthcare system was
my predominant client.
So, was I brought
back for all things
success and finance?
After all, as a young
20-something, I'd
made some money here,
and maybe money was
the reason why I was
supposed to come back
here, maybe success.
It didn't take
long for me to
realize that
wasn't the case.
At some point,
I tired of the
business world, or
probably more so
of insurance companies
and contracts,
if you know,
you know, right?
And in the late
90s, I determined
it was time to
move forward,
to do something
different.
Not very far from
here, on a side
stream, if you
will, Westminster
College was the place
where I'd get my
undergrad degree,
and then pursue
religious education
as a career, leaving
the business world.
The best place for that
to happen was here on
the south end of campus
at the Salt Lake
Institute of Religion.
And so, some 26 years
ago, I entered their
doors and became a
teacher. They hired me.
Upon being hired, I
dove back into, if
you will, another
yet deep ocean of
academia and learning,
and I pursued a
master's degree. Where
would be the right
place for me to
land? You can guess.
here at the
University of Utah
for a master's
in education.
Interestingly enough,
I accepted my degree
on this stage in about
10 minutes, not 10
minutes, 10 steps from
where I now stand.
I was asked to be
the student speaker
for graduation, where
I said, the student
first and always,
which I still believe,
by the way, in my
professional life.
So, was my return
to this location
to be for all
things educational?
Was it supposed
to be the message
of that education
at all costs?
It seems like recently,
things have been
speeding up in my
returns. Indeed, about
a year ago, my wife
and I were asked
to come here and to
help be administrators
and teachers for
an inaugural youth
conference for spiritual
learning for 14
to 18-year-olds held
on this campus and
in many campuses
throughout the world.
Not long after
that, I was asked
also to return
back to this campus
and at the same place
that actually gave me
a job, the Salt Lake
Institute of Religion,
to return and now
teach the older
age kids, the
college age kids,
and have an
experience with them.
So is my return
to these my
headwaters for all
things educational,
for an opportunity
to continue to move
forward and now in a
spiritual education
versus the
educational side I
mentioned of just
having been a teacher?
within one week
after being given and
accepted the position
to come here and teach
i was diagnosed with
a serious illness
remember kelts are
rare my rare illness is
known as sarcoidosis
given the job on november
29th diagnosed on
december 1st i'll
spare you all details
that you might not want
to know about sarcoidosis
like the medical
dictionary version or
maybe the CPT codes
or in what the
insurances will pay for,
but I will tell you
what it means to me.
What sarcoidosis has
meant for me is I stand
before you with
innumerable nodules in
my lungs, mimicking
cancer but not cancer.
I stand before you
with those same nodules
in my lymph nodes and
in other locations
in my body that I'm
uncertain of right
now what does that
even look like I stand
before you wondering
having questions that
are unanswered I
stand before you with
what it means to me
of in those unanswered
questions even some
physicians one saying
to me hey sorry it's
not cancer because
the money really goes
there for research
and so it'd be better
maybe if it were that
you can laugh at
that I thought it was
laughable I thought
how in the world right
it means for me
untold numbers of
people that have given
so much to me and
my family of time
and efforts and
finance and in so
many ways reaching out
to us and knowing
I can never repay
and also knowing
that it's impossible
to answer to those
people the simple
question how are you
doing today because
some days it's just
the same as it's always
been for the last
six months. Other
days, the symptoms
are flaring, and it's
too much to explain
which one and why.
Some days, it's
good, and if I say
it's good, then what
happens the next
day of what I thought
you were good?
What sarcoidosis has
meant to me is that
in the seeking of
answers to questions,
I can't just go
to any doctor.
Because of the rarity,
I'm being referred
to referrals by
referrals at this point.
Indeed, in the next
couple of weeks,
in some weird form
of excitement,
I'm getting
excited to go to a
national hospital
in two weeks
to try and get
some answers.
That's a stream I
didn't know I was going
to swim down, nor be
excited to swim down.
Sarcoidosis is
also meant for me a
love and a trust and
a care for people.
I've lacked in some
ways what some of
us are pretty well
used to. If you have
back pain, and
someone says, oh, my
mom had back pain,
and she, or they say,
well, when I had
back pain, I took,
I don't have those
abilities right now
because it's
something that most
folks don't know
a lot about.
The irony in all of
it, and what halts
the isolation in my
swim, if you will,
it's you. It's
that we're here
tonight together
because I know
you've swam a
solo swim before.
Yours is different
than mine, but
me having shared
mine tonight in
some way unites us
together and we're
swimming together
in the process.
While I don't know
entirely what's next,
while I can't answer
the question of
why the swim, why the
return to this location
over and over
again, even on this
stage at this moment,
what I can say is
this, I am enjoying
the experience of
knowing you're swimming
your swim as well.
Maybe in closing the
thought of this, if
the answers aren't
to be found quickly,
then where am I to find
answers to my story?
Maybe like you, I
look to those that
I swam with for as
long as I've swam.
My sweet wife endured
our 30th anniversary
was the day that I
was diagnosed, so
she's endured that
and many other things
and is noticeably
rocked. My children
have experienced this
in a hard way, and
their spouses and
significant others.
But they've also seen
me vital and strong,
like you see me tonight,
and I want to feel
that way in my life.
I want to be who I
need to be, but I also
know that salmon swim
back to headwaters
for their offspring.
So I consulted
the offspring and
gave them a little
version of my
story, and here were
their responses.
My youngest son
said, who by the way
currently is in his
faraway ocean location
of London, and has
been throughout
this entire spot,
serving a mission
for his God, returning
home this month.
Here's what the youngest
said. He said, Dad,
you lose the
wonder if you
just continue in wonder.
Sweetly, my oldest
daughter said the words,
Dad, perhaps it's
in your story
the why we are
here for all of us,
and we need to learn.
And I believe she's
right. I've never felt
to lay down in the ocean
and die there, nor to
pursue the headwaters
and never return
back to the ocean. I
want to go back and
forth and back and forth.
Perhaps the hardest
one came from my
middle son, because
it was a compliment,
and those are
hard to take, who
said, I'm grateful
that my dad's not
swimming some one last
crazy swim as fast
as he can trying
to get things done.
His life has
been the swim
that he was
meant to swim.
I don't know the answers.
I don't need to
know all of them.
But I do know that
the experience of
being with you,
with friends, with
family, with seven
other gifted individuals
who I hope you'll
listen to tonight
and be a changed
person from listening
to them, I am from
having done so.
It's the journey
that's truly mattered.
So while I can't
give those answers, I
will say to you, from
one Celt to the next,
enjoy the journey.
Thank you.
-
Perry Montoya
Transcription
Good evening, everybody.
I'm excited to be
here tonight and to
tell you this story.
This just happened to
me this past January.
I was binge-watching
one of my favorite
British TV shows called
24 Hours in the A&E.
It's a documentary
-type show
where they film
for 24 hours in
an emergency
room in London.
And in this show, they
bring in a patient.
His name is Mark.
He's about 32, 33
years old, and he's
had a seizure, and
they're going to try
to figure out why he's
had this seizure.
But as they bring
him in, and it's in
the middle of the night
I'm watching this,
I look at him and
I think, he looks
like my brother Ethan.
Let me tell you about
my brother Ethan.
My brother Ethan was
born in 1973, and he
just turned 50. We
had a big birthday
party for him. When
he was born, my mother
knew that something
wasn't quite right right
away. She tried to
nurse him and he
couldn't nurse. He
didn't have that innate
ability to nurse like
most newborns have.
So medical tests
started to be run
and a bunch of
tests were run as a
newborn and as he
was a young child
trying to find a
diagnosis for him.
And my parents
finally called for the
medical tests to
stop. They felt it was
only harming him.
Nobody was finding
any answers, and they
had put my parents
in a medical debt
of around $20,000.
Now, I calculated
that in 2023,
and that would be
about $139,400.
So that's a lot of
money. That was a really
financially hard
time for my parents.
So we just
thought that Ethan
was his own
unique disability.
And one of the
heartbreaking parts of this
is that my mother blamed
herself her entire
life. She thought
that it was her fault,
that she had caused
it. And that always
broke our hearts that
that was the case.
So now back to the show.
They bring Mark in,
and Mark's parents
come come into the ER.
Mark's parents' names
are Ian and Leslie,
and they start talking
about Mark when he was
a baby and when he
was a young child, and
there are more similarities
to Ethan when he
was a young boy. There
are things that are
mirrored, and I'm just
fascinated by this.
I'm just in awe that
I'm seeing this, and
some of the things
they say are that Mark
reacted very negatively
to food and to feeding
and Ethan experienced
that as well and that
Mark was really sick
as a baby and as a
young child and Ethan
was very sick as a baby
and as a young child
that Mark was delayed
in learning to walk
and to talk and Ethan
was delayed in learning
to walk and to talk
and so this was fascinating
to me and then a
nurse comes in and
brings Mark a paracetamol
to take that's British
for acetaminophen.
I work in pharmacy,
so I know.
And Mark's having a
hard time breathing
in this show. So they
pull his oxygen mask
down, and the nurse
gives him a cup, and
Mark takes a hold
of this cup, and he
has Ethan's hands. And
the way he holds the
cup is the way my
brother holds a cup.
The way he swallows
is the way my brother
swallows. The way he
breathes is the way
my brother breathes.
And my head explodes.
I can't believe
what I'm seeing.
And the next thing
that happens is Mark's
mother starts to talk
about their pediatrician
and how they had
a very bright and
intelligent and determined
pediatrician who
really looked through
a ton of textbooks and
observed Mark and
finally diagnosed him
with a very rare
genetic condition called
****** syndrome, which
I had never heard of.
And I'm in awe of
the show, and I
think, did I
just discover my
brother's diagnosis
after 50 years?
And I want to call my mom
and dad so desperately,
but they're both
deceased, so I can't call
them. And it's like
3 o'clock in the
morning. I have nobody to
call. I'm just wandering
around my house in
this wonder and awe
of what I've just
watched. It was awful.
But what I do do is,
as soon as possible,
I make an appointment
for him to have a
test done. I make an
appointment with his
primary care doctor
here at the U to have a
test done to test him
for ****** syndrome.
Personally, I didn't
need the test. That
hand holding that cup
was the test for me,
but no one would
believe me, obviously.
But my sister and I
go with the doctor
to the doctor's
office, and he agrees
to test Ethan for
that. He said the
test would take
three weeks to come
back. It took a week,
and the test came
back positive for
****** syndrome.
Now, it might seem
strange as siblings, and
there's four, five of
us total, Ethan and
then the four siblings
that we would be
overjoyed with this
diagnosis but we were because
knowledge is power and
the unknown is awful
and we were overjoyed
to have a diagnosis
after all this time
and so we got together
and we're going to sit
down and tell Ethan
and I was a little
worried about how Ethan
might take this news
but we sat down and we
talked about it with
Ethan and my little
sister had told him even
that there was a Facebook
group with, you know,
all these patients
who have ******
syndrome, and we were
discussing it with him.
And I'll never forget,
he got a grin on his
face, and then all of a
sudden he said, do you
mean I'm not alone?
And I'll never
forget that.
I can't imagine what
this has been like
for him, to think
he's alone his whole
life, and then to know
that he's not, and
that there are others
who have struggles
and challenges, just
like he has had.
And so that
was an amazing
moment for us
in this story.
A couple of days later,
I'm riding home on
the bus, and the
thought washes over me.
My Aunt Connie had
****** syndrome.
So my mom's little
sister, my Aunt
Connie, passed away
in 1959 at the age
of 12 after a heart
surgery at Primary
Children's where
they were trying
to correct a congenital
heart defect.
So one of the
characteristics
of ****** syndrome
is that you
can be born with
a heart defect.
Ethan gratefully was not,
but my Aunt Connie was.
So on the bus I
look up Ethan's test
results, and it says
genetic counseling
recommended, and I
get a referral from
Ethan's doctor for
genetic counseling.
That hasn't happened
yet. We've made lots
of phone calls, phone
calls back and forth.
They've said, oh, you
need to call here,
no there. So if anybody
has any connections
on how to make genetic
counseling actually
happen, that would
be great to know,
because we're really
interested. This has
affected, you know, as
you can imagine, our
extended family. We
have some answers, but
we also have lots of
questions so we're
still looking for the
genetic counseling
piece another characteristic
of ****** syndrome
is they have darker
pigmented spots on
their skin and ethan
has these on his back
so during that very
first appointment we
had where we requested
the test for ******
syndrome his doctor
was looking at these
and said oh he's got
a mole on that right
shoulder that does not
look good. That needs
to be removed. So it
was, and unfortunately
it came back as a
malignant melanoma.
And then because it
was right here near his
armpit where we have
our lymph nodes, he
was referred up to
Huntsman and needed an
actual surgery under
general anesthesia where
they had to remove
the cancer and then a
couple of lymph nodes
and unfortunately one
of the lymph nodes
came back with a small
cancerous tumor in
it but we would never
have been looking for
that had I not seen
this show had Mark not
decided to do this show
and we'd not made
that appointment so
this experience has
probably saved Ethan's
life But we're on that
journey with him now.
Back to the
show, the doctor
that's assisting Mark,
they figure out what
caused his seizure
is that he had
a severe lung
infection and pneumonia.
And the doctor says
patients with ******
syndrome are at risk for
severe lung infections
or pneumonias. And
this reminded me that
three years ago, Ethan
was very sick with
pneumonia. and was
hospitalized here at the U.
And at the same
time, our father was
dying, and he was
hospitalized in Ogden.
And that was a
really rough time.
Ethan started
to do a little
better and was
discharged,
and then our
dad passed away.
And then Ethan
deteriorated and
was readmitted,
and he missed our
father's funeral,
which was awful.
And I remember being
with Ethan here
at the U and a doctor
saying to us, I
just don't understand
why he's so sick,
why a young man is
so sick like this.
And I think back now
how great it would have
been to have a
diagnosis, to say, he has
****** syndrome, and
that's why he's so sick.
And just in March, Ethan
got double
pneumonia again,
and it was great to
say, I have a diagnosis,
and this is why
he's so sick. And it
did make a difference,
and it was better.
It was great to
have a diagnosis.
Diagnosis are important.
One of the greatest
parts of this journey
for me has been I
joined a Facebook
group and the power
of social media.
It was a ******
Syndrome Foundation
Facebook group
that connected me
with Mark's parents,
Ian and Leslie,
in London. And we
started emailing.
And that's been a great
experience because
I wasn't able to talk
to my own parents.
It was awesome to be able
to talk to
Mark's parents.
And they shared with
me some similarities
that I saw in my
own parents and
the way they both
treated their sons.
And I wanted
to share that.
They both wanted
their children
to be as independent
as possible.
They both saw the inner
strength in
their children.
They both saw that
their children
had fantastic
independent spirits.
Both boys attended normal
schools with
special ed programs,
and both parents
are so proud
of their son's
accomplishments.
And those things mirrored
my parents as well.
Then in one of the
emails, we've been
emailing back and forth
and sharing pictures
of grandchildren,
which has been so
fun. And then Ian,
Mark's dad, sent me a
picture of his back
garden, which was
absolutely beautiful,
and I'm super jealous
because I don't even have
a back garden,
so whatever.
they're amazing
but anyway
Ian shared this with
me in an email about
Mark's decision to be
on the show and I'm
just going to read it
because it's a quote
when Mark ended up in
St. George's and the
cameras were there
only one result was
possible mom and dad I
want to do it there was
more to it than you
might think footage
from the hospital cameras
and microphones then
12 hours of filming
at home, all boiling
down to perhaps 40
minutes of TV footage.
Mark saw the
first cut of the
program, and it
had his approval.
The TV company were
very good, very
sensitive, and gave
us a choice whether
to go ahead after
he passed away.
There really was
only one answer.
What would Mark
have wanted?
It has been a force
for good, and that is
what Mark's life has
been as well, a force
for good. Over 400
people attended our
small church to celebrate
his life, with local
shops closing for the
afternoon. Not many
get that, but we do
miss him dreadfully.
We are so grateful
for Mark's amazing and
courageous decision
to share his story.
Without it, our family
would still be wondering.
And we're grateful for
Ethan, who's
with us tonight.
He's an amazing
man, and he unites
our family in ways
I can't explain.
I'm grateful to
my siblings and my
parents, and for
this opportunity to
share this story
with you. Thank you.
I'm excited to be
here tonight and to
tell you this story.
This just happened to
me this past January.
I was binge-watching
one of my favorite
British TV shows called
24 Hours in the A&E.
It's a documentary
-type show
where they film
for 24 hours in
an emergency
room in London.
And in this show, they
bring in a patient.
His name is Mark.
He's about 32, 33
years old, and he's
had a seizure, and
they're going to try
to figure out why he's
had this seizure.
But as they bring
him in, and it's in
the middle of the night
I'm watching this,
I look at him and
I think, he looks
like my brother Ethan.
Let me tell you about
my brother Ethan.
My brother Ethan was
born in 1973, and he
just turned 50. We
had a big birthday
party for him. When
he was born, my mother
knew that something
wasn't quite right right
away. She tried to
nurse him and he
couldn't nurse. He
didn't have that innate
ability to nurse like
most newborns have.
So medical tests
started to be run
and a bunch of
tests were run as a
newborn and as he
was a young child
trying to find a
diagnosis for him.
And my parents
finally called for the
medical tests to
stop. They felt it was
only harming him.
Nobody was finding
any answers, and they
had put my parents
in a medical debt
of around $20,000.
Now, I calculated
that in 2023,
and that would be
about $139,400.
So that's a lot of
money. That was a really
financially hard
time for my parents.
So we just
thought that Ethan
was his own
unique disability.
And one of the
heartbreaking parts of this
is that my mother blamed
herself her entire
life. She thought
that it was her fault,
that she had caused
it. And that always
broke our hearts that
that was the case.
So now back to the show.
They bring Mark in,
and Mark's parents
come come into the ER.
Mark's parents' names
are Ian and Leslie,
and they start talking
about Mark when he was
a baby and when he
was a young child, and
there are more similarities
to Ethan when he
was a young boy. There
are things that are
mirrored, and I'm just
fascinated by this.
I'm just in awe that
I'm seeing this, and
some of the things
they say are that Mark
reacted very negatively
to food and to feeding
and Ethan experienced
that as well and that
Mark was really sick
as a baby and as a
young child and Ethan
was very sick as a baby
and as a young child
that Mark was delayed
in learning to walk
and to talk and Ethan
was delayed in learning
to walk and to talk
and so this was fascinating
to me and then a
nurse comes in and
brings Mark a paracetamol
to take that's British
for acetaminophen.
I work in pharmacy,
so I know.
And Mark's having a
hard time breathing
in this show. So they
pull his oxygen mask
down, and the nurse
gives him a cup, and
Mark takes a hold
of this cup, and he
has Ethan's hands. And
the way he holds the
cup is the way my
brother holds a cup.
The way he swallows
is the way my brother
swallows. The way he
breathes is the way
my brother breathes.
And my head explodes.
I can't believe
what I'm seeing.
And the next thing
that happens is Mark's
mother starts to talk
about their pediatrician
and how they had
a very bright and
intelligent and determined
pediatrician who
really looked through
a ton of textbooks and
observed Mark and
finally diagnosed him
with a very rare
genetic condition called
****** syndrome, which
I had never heard of.
And I'm in awe of
the show, and I
think, did I
just discover my
brother's diagnosis
after 50 years?
And I want to call my mom
and dad so desperately,
but they're both
deceased, so I can't call
them. And it's like
3 o'clock in the
morning. I have nobody to
call. I'm just wandering
around my house in
this wonder and awe
of what I've just
watched. It was awful.
But what I do do is,
as soon as possible,
I make an appointment
for him to have a
test done. I make an
appointment with his
primary care doctor
here at the U to have a
test done to test him
for ****** syndrome.
Personally, I didn't
need the test. That
hand holding that cup
was the test for me,
but no one would
believe me, obviously.
But my sister and I
go with the doctor
to the doctor's
office, and he agrees
to test Ethan for
that. He said the
test would take
three weeks to come
back. It took a week,
and the test came
back positive for
****** syndrome.
Now, it might seem
strange as siblings, and
there's four, five of
us total, Ethan and
then the four siblings
that we would be
overjoyed with this
diagnosis but we were because
knowledge is power and
the unknown is awful
and we were overjoyed
to have a diagnosis
after all this time
and so we got together
and we're going to sit
down and tell Ethan
and I was a little
worried about how Ethan
might take this news
but we sat down and we
talked about it with
Ethan and my little
sister had told him even
that there was a Facebook
group with, you know,
all these patients
who have ******
syndrome, and we were
discussing it with him.
And I'll never forget,
he got a grin on his
face, and then all of a
sudden he said, do you
mean I'm not alone?
And I'll never
forget that.
I can't imagine what
this has been like
for him, to think
he's alone his whole
life, and then to know
that he's not, and
that there are others
who have struggles
and challenges, just
like he has had.
And so that
was an amazing
moment for us
in this story.
A couple of days later,
I'm riding home on
the bus, and the
thought washes over me.
My Aunt Connie had
****** syndrome.
So my mom's little
sister, my Aunt
Connie, passed away
in 1959 at the age
of 12 after a heart
surgery at Primary
Children's where
they were trying
to correct a congenital
heart defect.
So one of the
characteristics
of ****** syndrome
is that you
can be born with
a heart defect.
Ethan gratefully was not,
but my Aunt Connie was.
So on the bus I
look up Ethan's test
results, and it says
genetic counseling
recommended, and I
get a referral from
Ethan's doctor for
genetic counseling.
That hasn't happened
yet. We've made lots
of phone calls, phone
calls back and forth.
They've said, oh, you
need to call here,
no there. So if anybody
has any connections
on how to make genetic
counseling actually
happen, that would
be great to know,
because we're really
interested. This has
affected, you know, as
you can imagine, our
extended family. We
have some answers, but
we also have lots of
questions so we're
still looking for the
genetic counseling
piece another characteristic
of ****** syndrome
is they have darker
pigmented spots on
their skin and ethan
has these on his back
so during that very
first appointment we
had where we requested
the test for ******
syndrome his doctor
was looking at these
and said oh he's got
a mole on that right
shoulder that does not
look good. That needs
to be removed. So it
was, and unfortunately
it came back as a
malignant melanoma.
And then because it
was right here near his
armpit where we have
our lymph nodes, he
was referred up to
Huntsman and needed an
actual surgery under
general anesthesia where
they had to remove
the cancer and then a
couple of lymph nodes
and unfortunately one
of the lymph nodes
came back with a small
cancerous tumor in
it but we would never
have been looking for
that had I not seen
this show had Mark not
decided to do this show
and we'd not made
that appointment so
this experience has
probably saved Ethan's
life But we're on that
journey with him now.
Back to the
show, the doctor
that's assisting Mark,
they figure out what
caused his seizure
is that he had
a severe lung
infection and pneumonia.
And the doctor says
patients with ******
syndrome are at risk for
severe lung infections
or pneumonias. And
this reminded me that
three years ago, Ethan
was very sick with
pneumonia. and was
hospitalized here at the U.
And at the same
time, our father was
dying, and he was
hospitalized in Ogden.
And that was a
really rough time.
Ethan started
to do a little
better and was
discharged,
and then our
dad passed away.
And then Ethan
deteriorated and
was readmitted,
and he missed our
father's funeral,
which was awful.
And I remember being
with Ethan here
at the U and a doctor
saying to us, I
just don't understand
why he's so sick,
why a young man is
so sick like this.
And I think back now
how great it would have
been to have a
diagnosis, to say, he has
****** syndrome, and
that's why he's so sick.
And just in March, Ethan
got double
pneumonia again,
and it was great to
say, I have a diagnosis,
and this is why
he's so sick. And it
did make a difference,
and it was better.
It was great to
have a diagnosis.
Diagnosis are important.
One of the greatest
parts of this journey
for me has been I
joined a Facebook
group and the power
of social media.
It was a ******
Syndrome Foundation
Facebook group
that connected me
with Mark's parents,
Ian and Leslie,
in London. And we
started emailing.
And that's been a great
experience because
I wasn't able to talk
to my own parents.
It was awesome to be able
to talk to
Mark's parents.
And they shared with
me some similarities
that I saw in my
own parents and
the way they both
treated their sons.
And I wanted
to share that.
They both wanted
their children
to be as independent
as possible.
They both saw the inner
strength in
their children.
They both saw that
their children
had fantastic
independent spirits.
Both boys attended normal
schools with
special ed programs,
and both parents
are so proud
of their son's
accomplishments.
And those things mirrored
my parents as well.
Then in one of the
emails, we've been
emailing back and forth
and sharing pictures
of grandchildren,
which has been so
fun. And then Ian,
Mark's dad, sent me a
picture of his back
garden, which was
absolutely beautiful,
and I'm super jealous
because I don't even have
a back garden,
so whatever.
they're amazing
but anyway
Ian shared this with
me in an email about
Mark's decision to be
on the show and I'm
just going to read it
because it's a quote
when Mark ended up in
St. George's and the
cameras were there
only one result was
possible mom and dad I
want to do it there was
more to it than you
might think footage
from the hospital cameras
and microphones then
12 hours of filming
at home, all boiling
down to perhaps 40
minutes of TV footage.
Mark saw the
first cut of the
program, and it
had his approval.
The TV company were
very good, very
sensitive, and gave
us a choice whether
to go ahead after
he passed away.
There really was
only one answer.
What would Mark
have wanted?
It has been a force
for good, and that is
what Mark's life has
been as well, a force
for good. Over 400
people attended our
small church to celebrate
his life, with local
shops closing for the
afternoon. Not many
get that, but we do
miss him dreadfully.
We are so grateful
for Mark's amazing and
courageous decision
to share his story.
Without it, our family
would still be wondering.
And we're grateful for
Ethan, who's
with us tonight.
He's an amazing
man, and he unites
our family in ways
I can't explain.
I'm grateful to
my siblings and my
parents, and for
this opportunity to
share this story
with you. Thank you.
-
Susan Madsen
-
Transcription
You know, the old
saying is they save
the best for last,
but I don't really
think that's true
right now. Can we
give everyone else
a round of applause
real quick? They've
been phenomenal.
They told me to
dress comfortably,
so my shoes
are coming off.
Although I do have to
revisit the save the
best for last. I am
the fourth of four
children, so I feel
like my parents finally
got it right. I don't
know. So anyways, my
colleagues tonight have
done wonderful things,
and it's really hard
to kind of summarize
two years of a pandemic
in a short period
of time, so I'll do
my best to do that.
Do you guys remember
a few decades ago
when flip books were
super popular? you could
fan through pages
and pages in a quick
little glimpse and
it would show you the
neatest little story
I was fascinated with
them as a kid I
thought that they were
really cool and while
the story was very
quick you would really
think about how arduous
it was to make all
of those minute
little changes and for
me in trying to summarize
the pandemic really
little flip books
of stories kind of
take shape for me. And
that's how I wanted
to proceed tonight.
Flip book one,
fur babies.
Just wait, it's good.
So at the start of
the pandemic, I was
living alone in holiday
with my two Brindle
puppies, Kaya and
Goose. And we'd been
there for a year. We
had a solid routine.
I'd wake up in the
morning take them for at
least a mile of a
walk get back home get
showered get dressed go
to work they would have
the entire duplex to
themselves and it had
a massive backyard
so they could get in
and out by way of the
doggy door off of the
kitchen I'd get back
home from work greet them
they're maniacs and
so they would jump all
over me I'd get changed
we'd go for another
walk about two or so
miles, and then we'd
come back home and settle
in for the evening.
It was a quiet,
peaceful existence, and
we'd been accustomed
to it for over a year.
But you sprinkle
a little global
pandemic in the mix,
and things shift
just a little bit.
I know, it's weird.
So what happened
was, I'll be honest,
and you know, my
family can attest,
Kaya and Goose
are kind of crazy.
They're dogs.
They like to bark.
And never in the year
prior had I ever had
any complaints or any
issues from the next
door neighbors, nothing.
Okay. So pandemic
hits and it got crazy.
So the people who lived
in the duplex prior
to me also had dogs.
And one day I get a
frantic phone call
from one of the
girls and they said,
ah, we just got this
crazy message. It's a
lady who's totally
threatening our dogs'
lives. we're really
unnerved but we now live in
New York and our dogs
are older and they
don't really bark so
we're thinking maybe it's
for Kaya and Goose and
I was like what and
they said you know
we're going to forward
this to you but probably
don't listen to it.
Something about like
a lady threatening
the life of my dogs
if they didn't stop
barking and you know
it kind of turned me on
my head because I see
my, you know, I see
my puppies as my
babies, and so I didn't
want anything to happen
to them. Well, the
lady didn't stop at
just the voicemail.
She then wrote a
letter, put it in an
envelope addressed to
neglectful dog owner,
and she walked all
the way up to my front
door because my mailbox
was right next to
my door, and she put
it in the mailbox. So
I got home from work
one day and I opened
this letter and read
this letter about,
you know, I'm going
to kill your dogs if
they don't stop barking.
And I'm like, that's
not cool. So I went to
the extent of talking
to my friends in law
enforcement and saying,
what do I do with
this? I called the
police and, you know,
without knowing who she
was, they couldn't
really do anything about
it, but they documented
it in case I came
home and found them
dead in the backyard. So
super cool, made me
feel at ease, clearly.
But I had these dueling
dichotomous feelings.
So I'm a social worker
at the hospital and
for me you know I
was trying to kind of
find some compassion and
so I thought well you
know this lady's probably
lived here. She's
probably heard them
bark before. What could
change? What could
have changed in you
know COVID? So I thought
well maybe she is in
isolation. Maybe
she's furloughed maybe
she's home by herself
and she's just going stir
crazy so I tried to
have that compassionate
side of me but then
at the same time like
ultra protective
considered buying like
surveillance cameras
just in case anything
happened but my best
friend Katie said you know
what bring the dogs to
my house in Harriman
we'll take care of
them we'll protect them
nothing's going to
happen so that's what
we did so I would see
my dogs when I'd go to
their house okay flip
book two it's not a
vacation it's an
alternative education so
Katie and her kids just
prior to the pandemic
had gone through a massive
life change imagine
a snow globe you know
with it's whatever
snowman or picture in
there that stays like
it's stayed in place
and you shake it and
everything is just
chaotic okay that's how
I kind of saw things
for them because they
were going through this
massive life change.
Katie was going
through a divorce
after 20 years
of marriage and
that was chaotic
in and of itself.
She also has five
children who at the
time were ranging in
age from seven to 19.
And so their dad
left the house at the
beginning of March
and each kid had their
own process and their
own feeling and their
own emotions about
him not being there.
So they were all kind
of mixed up. And then
COVID came, right? It
hit not long after.
So now, you know,
Katie's a single
mother with five
kids at home,
four of whom were
still in school.
And school and society
really shut down
initially, if you
recall. And then school
was like, no, no,
we're going to survive
this. We got this.
We're going online.
And, you know, I
don't know about you
guys, but I wasn't
trained as a teacher.
Katie wasn't, well, Katie
was trained as a teacher,
but most parents
were not prepared
for the online format.
So now a single
mother of five kids
at home needing
to homeschool and
still work and
pay the bills, it
was a little much.
She asked her ex at
the time if he would
come over and help
homeschool the kids.
He didn't want anything
to do with that.
So she wasn't going to be
able to do it on her own.
I don't know many people
that could at that point.
So at the beginning of
COVID, when we weren't
quite sure what kind
of personal health
destruction was going to
ensue, I, for the first
time in my life, was
able to work from
home as a social worker.
And so I had six weeks
that I was able to
work from home. So I
would work shifts, sleep,
homeschool kids. Katie
would work shifts,
sleep, homeschool kids.
So we tag-teamed like
that for the rest of
the school year, we had
many a come-to-Jesus
conversation because
the kids kind of thought
that they were off
the hook for school,
but they weren't. So
many come-to-Jesus
conversations later in
a few months, and, you
know, we got through it
all, and I promise you,
all five kids are still
alive to this day.
All right, flip
book three.
Is this really
how it ends.
So much of the
beginning was
unknown about
COVID-19, how it
would impact
your body system,
what long-term effects
it would have, who
would be most
vulnerable, and when the
exact moment of
infection and your immune
system would tag
team up on you and
make you its next
victim. So it was a very
scary time, and for
someone like me,
who's had an autoimmune
disease for nearly
20 years, felt like
a looming black
cloud that was following
me around, and I
wasn't sure when it
was going to hit me.
And being, you know,
in the house and
homeschooling five
kids, any of you
who have children
know that, you know,
sometimes they just
bring germs home.
They're kind.
They just gather germs
from their friends
and bring them home. So
my risk of contracting
COVID-19 was
exponentially increased.
So eventually on May
1st, my six weeks of
working from home
terminated and I was back
at the hospital. And
man, what a weird
experience. Like many
of my colleagues have
said tonight, I mean,
there was no visitors.
Nobody was allowed
in the halls.
Starbucks, which is one
of the busiest in the
state, totally quiet
and totally chill. No
chairs, no tables, no
nothing. And it was a
bizarre thing. You felt
like you were walking
into a petri dish of
COVID and you weren't
really sure what was
going to happen or if
you were going to, you
know, get some of the
germs and take them
home to your people and
infect them and all
of that. So public
transportation for me
wasn't, didn't feel safe.
So I'd drive to work
every day. I would
take a change of
clothes at the end of
my work day. I would
change into that and
be super cautious
not to touch anything
and then get my car
and go back home.
I was grateful that
I still had a job
and that I wasn't
furloughed, but at
the same time, it
was incredibly scary
not to know what
could or couldn't
happen just by being
in the workforce.
Flipbook four, did
you just cough at me?
With society's
reopening came
considerable
judgment and kind
of an us versus
them thing.
Utah unfortunately
made national news or
international news when
a woman in southern
Utah said that
wearing a mask made it
as hard for her to
breathe as George Floyd
when the officer
kneeled on his neck.
Not the way we want to
make news, but
that's okay.
The virus then
became political,
and it further
divided a nation
that was already
deeply wounded.
Instead of showing
compassion,
camaraderie, we started
judging everyone.
Someone coughing
or sneezing near
you felt like a
personal attack.
We joked when
that would happen
and say, did you
just threaten me?
And, you know,
let's be honest,
it's still kind
of funny, but it
also, right, it
also illuminates
how fearful and
self-preserving
we can be as a society.
For me, the facade
of humanity fell
and defensiveness
gradually became normal.
And I'm not sure
how we get back to
a place of camaraderie
and compassion,
but I hope that at
some point we will.
Flip book five,
the strongest among us.
In the household,
there was Katie, me,
Katie's mom, and
five kids. And
out of all of
us, Katie by far
had the strongest
immune system.
Her oldest, who's now
21, has some asthma
issues and has a
diminished immune
system at baseline.
Her mom also has some
health issues and
age, advanced age,
was always a factor
kind of at the
beginning of the
pandemic and throughout.
So we were really
scared about
either of them
getting sick.
And then you have
me. I have had
an autoimmune
disease for nearly
20 years. And I
like to say that
I've got a princess
immune system
because, you
know, if I don't
get a minimum of
seven hours of
sleep per night,
I get sick.
And I know what you're
thinking. You're
thinking, oh man,
that's so great. I
can't believe you
have to get seven
hours of sleep a night.
It sounds glamorous.
I know. Try not
to be too jealous
because it basically
feels like I'm an 88
year old person in a
38 year old body and I
really have to protect
myself and pre-COVID
as we now measure time
a common cold would
knock me out like so
hard okay so for me
I was also intensely
terrified that I would
get sick with COVID
so and if I did forget
about it like if that
virus even so much
as winked at me from
across the room like be
laid up in a hospital
bed and comatose and
ventilated. It would
not be a good scene.
So the family was all
rallying around to
be super protective
and protect the three
of us that had diminished
immune systems.
Well, Katie, with
the strongest immune
system, comes home
from work one day
and she said, you
know, I don't feel that
good. I've got a
tickle in my throat.
I'm congested.
I can't taste or
smell anything.
And I was like,
whoa, hold on. Ever since
I was a kid, anytime
I got sick I can't
taste or smell anything
and she said well
that's not ever how it's
been for me so she was
adamant that she wear
a mask around the house
and socially distance
from us at all times
and I kind of teased
her about it but
surprise surprise she was
right and she got the
COVID positive test
that came back so now
we're all in a panic
worried that everyone
in the house could get
sick she's isolated in
a room at the front of
the house that opens
to the front yard and
you know the best we
could tell is that it
was five minutes chatting
with a friend still
socially distanced
but right like still
following precautions
but still got sick so it
was during her 10-day
isolation that I saw
the full impact that
COVID could have on the
psyche she was super
strong super valiant
super cautious for the
first couple of days
and handled it really
well, very impressively
well, in fact. But then
she started to, that
loneliness and isolation
kind of started to
get to her. She started
to get stir crazy.
She would Lysol everything
in the room. She
would Lysol when she'd
go to the bathroom.
We would take plates
of food to the
door, leave it for
her, both masks
on both sides.
When she was done,
we'd go and take it
and wash our hands,
wash the dishes,
all the things.
And it was hard
for me because I
wanted to help and
I wanted to fix
the emotional
pain that she had.
And I couldn't.
And some of that
emotional pain
was her own fear
that she had exposed
me and her mom
and her oldest.
So, you know, we did
our best. I wanted to
do anything that I
could to help and make
her isolation even just
a little bit better.
So we would read bedtime
stories outside of
the door. We'd FaceTime
several times a day.
it just wasn't wasn't
enough it was it was
too overwhelming for
her so one day I went
to the front of the
house where the room
opened up to and she
didn't know I was out
there I grabbed a few
pieces of mulch from the
flower beds and I
started just tick tick
tick on the window and
she had no idea what
was going on she's like
looking around in the
room what's going on
finally she realizes
it's coming from the
window and she comes to
the window with the
biggest smile I'd seen
since she went into
isolation. So we spent
the rest of the time,
you know, being able
to be unmasked from
opposite sides of a window,
and it made things
a little bit easier.
Flipbook six,
COVID can't stop love.
From the moment I met
Katie six years ago,
I was drawn to her.
She's charismatic, she's
brilliant, she's
funny, and she's a
ridiculously long list of
other amazing qualities
I always teased her
that she could perhaps
be a lesbian and she
was like no no no no
I'm not it's not a
thing it's not a thing
and I was like okay
cool so the years go by
I love that journey
for you so the
years go by we we go
from casual acquaintance
to friends to
obviously, like,
quarantined together
and homeschooling kids.
And then we started
dating, we got engaged,
and we got married
on August 21st, 2021.
Thank you. Thank you.
I feel a little bit
like Hitch. Do you
guys remember that
movie where he sets
people up? I just set
myself up. So follow
me for more dating
tips. You're welcome.
flip book seven lessons
learned COVID still
here it still impacts
us all I wish I could
tell you when it would
end or lessen its
impact but some of
these things are long
lasting as you've heard
from the other presenters
we lost a lot of
lives and that's not
new information but
it's intensely personal.
I don't know when
things are going to go
back to normal. I don't
know when we won't
have to be masked at
the hospital anymore.
COVID's not biased about
the people that
it infects.
Mask, no mask, precautions,
no precautions.
Social distancing,
no social distancing.
It just infects people.
And that's the thing
about viruses like
this is that you're
contagious before
you're symptomatic so
at any moment any one
of us could have
symptoms have illness
and not know it and
give it to someone
else um so it may
sound tragic and sad
that that's how virus
you know this virus
works but in a way
it kind of makes it
easier to bear because
for me COVID doesn't
pick political sides
it's not racist
it and it is relentless
against everyone
in that way it makes
me feel a little
more unified with
my fellow humans
and that's all I
can hold on to as it
continues to evolve
my will is stronger
my tribe is
stronger now with a
wife five kids four
dogs and a mother
-in-law it's fine
don't worry about it
and I can't be
sure that I'd
have them if it
wasn't for the
chaos and
isolation of COVID
out of all the tragedy
uncertainty fear and
sadness there can still
be peace and comfort
and unconditional love
just like trees have
to lose their leaves
and hibernate before
their spring comes we
all have hardships that
can turn into beauty
if we'll just allow it
Thank you.-
Aimee Vincent
-
-
Transcription
Hello everyone,
sorry if you
see me laughing
I'm used to smile,
so my name is
James Mwizewa.
I moved from Rwanda,
I moved to the
United States of
America from Rwanda,
a very small country
in East Africa and
I moved by the end
of 2011 and got
hired as a custodian
here at the University
Hospital by the
beginning of 2012.
Since then, up to now,
I'm still employed
within the same
Environmental
Services Department,
but now as a supervisor.
Thank you. Thank
you so much for this
great opportunity
to be here today in
order to help you
stepping into the shoes
of custodians and
the whole EVS team.
This will be to help
you learning a little
bit about what keeps
us stay resilient
and persevere through
our demanding work.
We are talking
about resilience
today because we
as human beings,
we as healthcare
workers, we as
custodians in
that ambiguous
situation of COVID
-19 face fear.
We face stress,
we face challenges,
hardship, crisis,
and so on.
As healthcare
workers, the only
option we have is to
overcome and quickly
adapt to the
current situation.
First of all, I
would like to ask
every one of you
to put yourself
in a position
of a custodian.
A custodian who is
assigned to empty
and transport tons
of soiled linen,
infectious, and
regular waste.
I know it may
not be easy.
I guess many of you
don't have experience
with hospital cleaning.
But try to put
yourself in a position
of a custodian who
is assigned to clean
a precautionary room.
Let's say, for example,
a COVID-positive
room with
precautions
such as droplet,
airborne, and contact.
Let's go back
and think about
custodians and what
they do every day.
These are employees
who come to work
every day with
the same routine.
Moving,
lifting,
heavy things, and
using every part of
their bodies to
accomplish their duties.
Most of the time,
the task they perform
to provide a clean
and safe environment,
they have to do
those tasks, the
same task, repetitively
in a single day.
obviously there is
a secret that can
prove you why
there are so many
custodians and EVA
staff who have been
doing this job
for so many years
so I'm going to share
that secret with you
so it's not going to
be a secret anymore
so I've been working
at the university
hospital for 10
years and 42 days
and I've seen many
custodians and EVA staff
who have been working
there longer than I.
I've seen many
who are able to
get their retirements
after working
there for more
than 20 years.
If we ask everyone
here about resilience,
everybody can talk about
the balance
of resilience.
resilience differently.
But as an EVS employee,
let me tell you where our
resilience comes from.
Like anyone else, there
are two interactions
that happens in our
daily routine between
two sides, the negative
experiences that
we face every day,
and positive outcomes.
It's a kind of
fight between these
two, and only
one needs to win.
When our brain
only focuses and
thinks about
all the negative
experiences that
we face every day,
our resilience scale
looks terrible.
That's when we only
think and focus
on something
like, this is an
entry-level job,
a custodial job.
It doesn't pay big money
compared to some
other positions.
You have to deal with
precaution complexities,
such as dealing with
a COVID positive room,
cleaning a COVID
positive room, or
cleaning any other room
which has different
kind of infectious
diseases and then that's
when you think about
some other family
problems and so on
but as custodians and
health and EVA staff
this undesirable
character of someone
who is a loser a fixed
mindset person
and a discouraged
person doesn't
define who truly
we are. We are
better than this.
Just think about
that dirty COVID
positive room that
I was talking about.
See how it looks.
Very messy. Dirty.
Infected. and think
about how it looks
after the whole process
that we go through
to clean, disinfect,
and make it ready for
the next new patient
admit without any
cross-contamination.
Think about patient
feedback who can appreciate
our effort and recognize
the environment
as clean, safe, and
comfortable for them.
Think about feedback
of our colleagues,
clinical staff,
who can offer
encouragement to us
and appreciate the
health environment
that we provide.
To be honest with you,
There is one
thing that will
balance our
resilience scale.
When seeing our
patients and
business partners
happy, being happy,
that's the number
one that will
balance our
resilience scale.
Then when we think about
some other
positive outcomes,
such as the salary
that was not even
stopped during that
crazy time of COVID-19
when many of other
companies were closed,
the great working
environment,
and the healthy working
environment with
leaders who care.
When we consider
all of this,
it shows like our
balance became like the
negative experience so
light and meaningless.
knowing that
we contribute
to the good patient
outcome that
itself makes us
makes a sense
of pride in the
work that we do
so
I want to, today is
the day to share a
story and I would
like to share today
two stories while I'm
about to conclude.
So when we are talking
about leaders who care,
it doesn't mean
leaders who are always
thinking and focusing
on the salary
increase of the
employees or any
other monetary
recognition. Don't get
me wrong. That's
also very important.
But leaders who
are taking time,
who are investing
the effort in
mental health of
the employees,
leaders who
are taking time
to listen to
the employees,
and leaders who
are proactive
are always the best.
These leaders don't
only help employees to
be happy, engaged,
productive, but they
also help employees
to be more resilient.
Between two
to three years
ago, so before COVID,
our leaders started
what they called value
culture huddles. We
usually call them rocks
-on-the-shoes sessions,
where employees can
help to identify those
small problems that
can add up to be a
stressful environment.
Employees also can
participate to remove
those rocks on their
shoes so that they
can work in a very
good environment.
our leaders were able
to discover a very
important thing that
employees want to
be heard it started
with leaders and now
it's at the custodial
level in my team
we are counting about
35 programs that
were identified
from the employees
Not a single problem
is to be ignored.
So we work
together to remove
those rocks on
their shoes.
As a result of this, we
recently participated
in our quarterly
wear check survey.
My team had a
participation rate
of 79%. And we
scored higher than
2021, than 2020
in all categories.
It's great to have
leaders who have vision.
This happened
before COVID.
It was much
easier to keep
our staff more resilient.
The last story.
between four
to five years
ago. I don't
remember the date.
So we had a big incident
where patients from
the emergency room
had to be evacuated
from emergency
room to different
inpatient units. And
some patients were
in the hallways.
the main steam
line in front
of the hospital had bust
so when the incident
was clear we were
asked to make sure
that emergency room is
cleaned within 45 minutes
just in that range
it was tough
but we got help
You know, we have a
very good communication.
We had help from
all environmental
services teams
to come and help.
I'm telling
you the truth.
Within that,
during that time,
like at the
end, 45 minutes,
the whole emergency
room was cleaned,
disinfected, and
ready for patients.
so I don't think you can
imagine how happy we were
celebrating
with a big smile
on our faces
so what that shows you
our happiness
comes mainly from
the care that we give
that's the number
one that will
keep us coming to
work every day.
We know money is very
important in life,
but with what
we do every day,
it's more about passion
than anything else.
It seems to us that
we are fighting a
good fight and we
are celebrating and
finishing our races
every single day.
Thank you so much.-
James Mwizerwa
-
-
Transcription
Way up high,
near the ceiling
of most theaters,
many theaters,
there's a series of
metal catwalks. And
those are meant so
that you can get to
the lights and the
electronics and
everything. They're
very narrow metal
grates, and they're
not particularly safe.
So, of course,
when I was 16 and
away at a theater
summer program,
I took advantage of
an unlocked window
in the light booth
in the back of
the theater to go
up on the catwalks.
So I was thrilled with
this new view of the
space. I was maybe 50
feet above where you
are now, and I walked
quickly and silently
because I didn't want
anyone to hear me.
But what I didn't
know at the time is
also in most theaters
that have catwalks,
the catwalks in
the house where
you're sitting and
the catwalks backstage
are separated
by a large break
so that the curtain
can come across.
so as I walked quickly
silently I suddenly
stepped out into nothing
darkness emptiness
Friday the 13th March
2020 I was sitting
in the atrium of the
health sciences education
building if you know
the health sciences
building up there I
teach here I teach
at the U health
sciences mostly medical
students I was sitting
with a bunch of my
colleagues also teachers
it's a very strange
time to be in
healthcare. It's a very
strange time to be in
healthcare education.
Here I am.
If you know the
atrium, you know that
the space is four
stories high of glass
and there's a big
glass ceiling and it's
meant to be a space
full of light and
air. But what my
friends and I felt
was something enormous
pressing down on
us because we had
just heard that we
would be teaching
medical school online.
We would be teaching
medical school
online on Monday.
We would be
teaching medical
school online, and
that had to happen
over the weekend.
So we knew something big,
something important
was coming,
but of course we
didn't know what.
But we stepped
out into nothing,
darkness,
emptiness, and we
wouldn't return to that
building, that atrium
for more than a year.
Right away, I
became kind of
an air traffic
controller.
I gathered all the
electronics I could, my
laptop, my old laptop,
my monitor, my old
monitor, my phone,
my old phone, and I
moved from my office
up in the School of
Medicine in the basement
to the basement of
my house, where at
least I had a window.
And I gathered all
my screens around me.
Immediately,
I came up with
some kind of
Zoom personas.
So teacher on Zoom,
colleague on Zoom,
parent on Zoom.
As a teacher, when
I was teaching
on Zoom, I went
for very calm and
professional at
the shoulders and
the head, right,
the little box.
Meanwhile, my fingers
were madly going across
keyboards. I was
making sure PowerPoint
slides were going, that
guest speakers were
speaking, that faculty
and students were
talking to each other.
and then below those
frantic hands were
my legs which were in
pajamas because I
learned really early on
that all you have to
do is throw a scarf and
a necklace over your
pajamas or your sweats
and you look just
fine to teach on Zoom.
So as a colleague
on Zoom and I
have to say it's
really hard to be
an extrovert
during a pandemic,
I kind of turned into
a class clown. So in
every meeting I
would put jokes and
disruptive comments in
the chat. I would use
the filters, you know,
for comedic effect.
In one meeting I
performed a pandemic
parody that I
had written of I
Dreamed a Dream
from Les Miserables.
And to be clear, that was
not my task for
that meeting.
Nobody wanted that.
When I was Zooming,
I was also parenting,
and when I was
parenting, I was also
Zooming. So I became
expert at blocking the
65-pound child who
was coming at me hard
while I was trying to
have a conversation.
And I could do that
without missing a beat.
Except when I did
miss a beat, and the
65-pound child
crashed into my lap,
and the conversation
went on anyway.
I mean, everybody had
a child or a dog or
a cat or a Peloton
in their screen, too.
So many of us were
living our lives,
doing our jobs,
inside our screens,
inside our houses.
Maybe this is what
happened to you.
Nothing, really.
Maybe you're
thinking, Gretchen,
nothing really
happened to you.
I'm a historian by
training, and so when
something big,
something historic,
something momentous
happens. I want to know
the stories. I ask
people for their
stories. I want to
know what's happening
out there on the
front lines in the
hospital, in the
clinic, in the streets.
And so I asked people
for their stories.
And so in many of
these Zoom meetings, I
ended up listening to
death and suffering.
I recorded some of
them for posterity
with permission, and
others would just well
up crashing into
another conversation.
I listened to death
and suffering all
day and replayed it
in my head all night.
I was spared
the worst. I was
never in the
room with death.
I was left
with the worst.
I was never in the room.
I offered witness and
comfort and condolences,
but it was always
distant, remote,
because I was always
on the other side
of a screen on the
other end of a signal.
I was never in the room.
So I spent my days
listening to death
and suffering, and
then I heard people
who didn't believe,
maybe because they
weren't in the room,
who didn't offer
condolences, who
didn't offer witness.
And I wondered, maybe
this isn't real. I
mean, there's lots of
other things going on,
and the sun is shining,
and the rain and snow
are falling, and the
plants are cycling
through their seasons,
the children are growing,
and certainly the news
was full of lots of
other things, lots of
other things. My friend
Donna calls it the
divine reset of 2020.
So maybe none of
this was happening.
There was nothing
to witness.
For months and months,
I went to sleep with
tears in my eyes, and
I woke up with tears
in my eyes, and I
dreamed of an escape.
And every time I woke up
back to whatever
this was,
wondering if it was real.
most of those deaths
that I heard about
weren't mine they were
someone else's story
but some of them
were mine one
two three four
five six seven
eight eight of
my people dead
there were no
funerals one zoom
memorial in the
midst of this nothing
darkness
emptiness I still
can't see the holes
that they left.
When the vaccines
arrived, I was
first one in line.
As soon as I was
eligible, I got an
appointment, and
then I reacted
badly to the vaccine
and ended up in
the emergency room,
emergency department.
So then I worked
with my doctors
because I was
darn sure going to
get vaccinated,
and we tried again.
And I was worried
then about was the
virus or the vaccine
going to make me
sicker. And I joked
about this with the
nurses and the EMTs
who were watching me
like hawks, like
bored, exhausted hawks,
as I tried to get
the vaccine again.
And I still don't
really know what my
immune system's
up to. Am I fully
vaccinated? Am I high
risk? Am I just weird?
So I just keep waiting
and watching and testing.
Two years in now, and I
haven't tested
positive yet.
nothing.
A whole lot
of nothing has
happened to a
whole lot of us.
Nothing is not nothing.
If you've ever jumped
or fallen from a
significant height,
you know there's
this ridiculous
moment in the middle
where you're kind of
trying to claw yourself
back up to where
you jumped from.
Or maybe you're more
dignified than I
am. But I basically
turn into a cartoon
character and my
arms and legs are
going full speed
as I fall into the
water or whatever
is saving me below.
But in those moments,
I don't scream
like some people do.
I'm silent. My lungs
are the only things
that are still.
There's this moment of
transformation.
It's thrilling,
terrifying,
Suspension.
I know it's
going to end, but
I lose the ability
to count the
seconds as I
flail downwards.
Along with many of
my friends, I've
publicly counted the
days of this pandemic.
It's a way of
cheering ourselves on.
This is day 741.
741 days since Friday
the 13th, March 2020. 20.
But privately, I
count the hours.
It seems more reasonable
when I'm dealing
with so much nothing,
darkness, emptiness.
Maybe the next hour
will hold something,
anything.
Maybe I can hold on
for one more hour.
Maybe emptiness
has edges.
Maybe I can catch one
and pull myself back up.
Back in that
long-ago theater,
somehow my
hands were still
on the rails
of the catwalk,
and I gripped on hard,
and I pulled back,
and I caught my toe on
the edge of the grate,
and I dragged myself
back up to the catwalk.
I stood up, turned
around, walked
back to the light
booth, climbed through
the window, and
left the theater.
I hadn't made a sound
the entire time.
It was a long time
before I talked about
that moment because,
first of all, I
knew I would get in
really big trouble,
but also because I
wasn't sure if it
had happened or
what had happened.
Nothing happened.
It was nothing.
It wasn't nothing.-
Gretchen Case
-
-
Transcription
The beginning.
The pandemic
started for me in
earnest on February
24th, 2020.
I know the date
because I took a
screenshot of the
New York Times
alert that woke me
up that morning.
Stock market
drops as investors
panic for the
spreading coronavirus.
Before that, it
had been kind of
a background noise
like an Ebola
outbreak in some
faraway land.
But in the next
several weeks as we all
watched aghast at
Italy and then New
York going up in
flames, we could feel
the drumbeat heading
towards our door.
My first shift
after COVID finally
hit Utah was in
March of 2020.
Quarantine was in
effect, and my drive
up to the hospital
at 5 p.m. was as if
through a post-apocalyptic
movie or novel.
My neighborhood of
9th and 9th, usually
bustling with
activity in the coffee
garden and the
restaurants, was empty.
I waited at the
stoplight on 9th South,
watching the light
cycle from red to yellow
to green. Me, the
only car on the road.
All the restaurants
had closed signs.
As I made my way through
the University of
Utah campus and the
hospital parking lot,
usually teeming
with activity as
people try to
rush to get home,
a ghost town.
The hallways in the
hospital were eerie.
When I first got
there, I texted
my partner who
had been on the
new COVID team
for a week now.
I needed to learn how
to put on the PPE,
the protective
equipment, the masks,
the air, the air
hoods and the gowns.
I'd gone through
the classes and seen
the online activities
and what is all
kind of in a dazed
motion, pushing buttons
and being told
where not to touch.
So I met Emily Signer
in the hallway.
Her and Natalie
Como and Danny Babel
were three of these
smart, brave doctors
just six months out
of residency, and
they were the tip
of the spear for us
as the COVID came
through our doors.
So Emily walked me
through where not to
touch and how to go
about putting all
this equipment, because
it mattered now.
There's so much
we didn't know. We
knew that the virus
was contagious,
but we didn't know
how contagious.
We knew that there
was refrigerated vans
outside of hospitals
in New York City.
We knew that
nurses and doctors
had gotten sick and died.
So I looked to her
and said, okay,
show me how to do
this. And about an
hour later, I got
my first patient.
COVID positive,
low oxygen.
Okay, let's do this.
I stood outside the
room and my heart was
beating, my hands
trembling a little bit.
I'm naturally
a little bit
clumsy and pretty
distracted.
And I just kept
thinking to myself, I'm
going to infect myself.
I'm going to get
infected. I'm going
to infect myself.
The night before,
I'd had nightmares.
I was intubated
and sick in the
ICU, and my family
was trying to get
to my wife's home
in Mexico City.
Not long after that,
it hit close to home.
Two of the partners in my
group, two of
the doctors,
their parents got sick.
The first partner,
his dad came down
with a fever and a
cough. He was admitted
to our hospital,
to our hospital
floor, we took care
of him, to our ICU.
And then came the
day that he was just
too sick and he needed
to be intubated.
And my partner, Ryan
Murphy, who's so pragmatic
and so stoic in all
circumstances, knew
his dad's age, knew
how much oxygen he was
on, and he gathered
his family on FaceTime
for all rights and
purposes to say goodbye.
His dad survived,
thank God.
But my other
partner's dad did not.
He had to fly back
east for the funeral,
and while he was at the
funeral, his grandpa
fell ill, and his
grandpa died as well.
The quarantine set
in, the lockdown set
in, and things got
better in the hospitals.
In fact, patients
just, it was empty.
And we kind of
looked at each other
awkwardly We
threw our goggles
and our masks
and shrugged our
shoulders like, is
this going to come?
But as spring turned to
summer and
summer to fall,
quarantine
fatigue set in and
people started
to get sick.
Right around that
time, me and some of
my partners took
over the inpatient
medical service in
a hospital in Tooele
called Mountain
West Medical Center.
and there were many
weeks that were terrible
during during that
wave but the first week
stands out the most for
me the first bad week
our four little ICU
beds were full all
with COVID pneumonia
two 37 year olds two 85
year olds all on absolute
maximum amounts of
oxygen no ICU beds in
the big medical centers
were open were available
they're all full
and so I called
around and
finally I found a
bed in Timpanogos
with an intensive
care doctor
and I told him about
my four patients and
I could hear the
fatigue on his end and
he said we'll take
one of the 37 year
olds but we're not
going to take an 85
year old they're going
to come to our hospital
fill up our bed and
they're going to
die anyways and as
the 85 year old got
worse and started
dying at our hospital.
His daughter would stand
outside the room
day and night
and any time the
oxygen would dip or
he started working
harder to breathe,
she would fall to
her knees and she
would plead and pray
and cry, sometimes
in English and
sometimes in Spanish.
And as the 37-year
-old got worse,
we knew that in
order to transport
him, we would need
to intubate him.
He was a giant
of a man, a big
Pacific Islander
guy who'd been
a football star
in high school.
He had three beautiful
kids at home and a wife.
And every day we'd
tell him, you need to
be intubated. We
need to intubate you.
That's the next step.
And every day he'd
just shake his head
and say, no, not today.
Until finally, he
became so sick and
confused that he could
no longer say no. And
with consent from his
family, we intubated
him and sent him
on a, and his lungs
were so sick and so
fibrotic and stiff
that the ventilator
couldn't ventilate his
lungs and his oxygen
dropped and he went into
shock and his knees
turned blue and cold.
And as we
stabilized him and
got him on the
helicopter to the
University of
Utah Medical ICU
where a wonderful
colleague of mine,
Beth Middleton,
took over his care.
and she was able
to stabilize
him for a couple days
but his lungs were
still too sick
and he would
need to be put
on a lung bypass machine
and the night before
he was to be put on it
all his organs
started to fail and
he was too sick
the next morning
and he passed away
several days later
those three
kids with a mark
on their lives
forever However,
a GoFundMe link
was forwarded to me
several days or weeks
later for his family.
A picture of him,
obviously not sick,
with his three
kids and his wife.
He was known
as the gentle
giant in his community.
And for the
first time in the
pandemic, I had
tears in my eyes.
During that time, the
country was
ripping apart.
There was toxic politics.
There was tear
gas in the streets
of Washington, T
.C. and Washington
staff walking
through them.
My African-American
brothers and
sisters were
suffering so much
after they watched
one of their sons
be suffocated
for nine minutes.
I started waking
up at 3 and 4 in
the morning, and
I couldn't sleep.
I felt hollow.
There was just so much.
I couldn't find the
edges of everything
to get my arms around.
And there came
a point when I
was so sad from
it all that I
didn't want to
live anymore.
And I texted a friend
one day when I was
under a cloud of
sadness. And I said,
buddy, I'm not
doing okay.
I'm sad.
I'm so, so sad.
In the fall of 2021,
the first wave had
passed and Delta crashed.
Delta was different.
We were all
different by then.
Our elderly had gotten
vaccinated and a lot
of our at-risk folks
had gotten vaccinated.
and the illnesses
were preventable
and the patients
were mad.
Sometimes they
were indignant.
They would get
angry at us when
we talked to them
about vaccines.
They'd swear at us when
we'd talk about
intubation.
They'd threaten
to sue us.
And my sadness turned to
anger and frustration.
But there was still
a lot of sadness.
Delta was ferocious.
Whole families would
be hospitalized.
We had a 65-year-old
who was admitted,
who was intubated within
hours of getting
to the floor.
Five hours later,
his daughter was
admitted, and she
was intubated.
The daughter died, and
the father survived.
I took care of another
woman who her and
her sister had both
been admitted in the
same week, and only
one of them survived.
None of it
made any sense.
January 2022,
Omicron crested.
And despite all we'd gone
through the
previous two years,
it nearly broke us.
The nurses had left. We
were in a
nursing shortage.
Doctors and providers
were working
extra shifts
because so many of
us were sick with
COVID at home.
Everyone was on edge.
Everyone was irritable.
And then it happened.
The thing that my family
had worried
about the most,
and that was
having someone
in our family get sick.
Can't breathe.
Or he can't breathe.
My wife texted me.
Her younger brother,
Her younger brother, her
closest sibling,
was sick.
And they texted in the
family text room, the
CT scan of his lungs,
and they were awful.
They were scared we
were going to lose him.
And he FaceTimed us from
his hospital
bed that night.
You could see he was
working hard to breathe.
You could hear
the oxygen,
the high-flow oxygen
blowing away in the room.
And the whole family
was FaceTiming him, and,
you know, we were
saying our goodbyes.
And my wife's
mom, his mom,
was just paralyzed
with fear.
her youngest child
was so sick
and
it was so
so frustrating
because here
we couldn't give
away vaccines
and there there
was these massive
shortages and they
had to wait for months
and he hadn't
gotten his booster
yet just because
he had to wait
and so he looked
at his mom
And he said,
Ma,
toma agua, mama.
Toma agua.
Drink water, mom.
And having been
a part of this
culture and their
family for 10 years,
this meant so much more
than just drink water.
This was mom.
I see you, I see that
you're suffering,
and when the family
said this to each
other, when the
family usually says
this to each other,
it's, you know, with
a concerned face and
with eye contact,
and it's when anyone
has a headache,
or is tired, or is
having a bad day, or
and they look at you,
and they say, drink
water, and it means,
you know, I see you, I
see that you're suffering,
I see that you're
sick, and I love you,
and I want to help you,
and this is what he
was saying to his mom.
Up the next morning,
he was intubated.
He'd gotten sick
in the night, and
my wife had stayed
up all night.
And so while
Omicron was raging
through our
hospital here,
we walked around
in kind of a daze,
praying and hoping,
and as so many of
our patients and
families had done for
the last two years,
but he survived
and we're so grateful
that he survived
I've changed
through all of this
I think we all have
and
you know I think I've
changed for the better
maybe that's a cliche
way to end this
story but I think
I am a better me
like water in a storm.
It became very hard
to see as the various
layers of my life
were thrown about in
a swirly randomness.
But as the sediment
started to settle,
the things that matter
really began to
separate out.
And I can see now
more clearly than
I ever have been
able to before.
Thank you.-
Devin Horton
-
-
Transcription
So thank you for the
opportunity to speak.
I've not really put
together much of a
story. I have a
couple of reflections
looking back over
the last two years.
COVID's been interesting
for a lot of us.
When I spoke with
Robin and Megan
about this earlier
this week when they
asked me to present,
they said, oh,
you're the only
speaker that had a
kid in the middle
of the pandemic.
Wasn't the best idea, but
it's definitely
been worth it.
I look back over the
last two years and I
know most of you know
me for my role working
on the vaccine clinics
and you know I'm
definitely very proud
of that and thrilled
that it probably helped
vaccinate most of
all you in the room
or direct you through
the vaccine clinic
but look back and it's
there's a lot of things
I learned from COVID
in general and a lot
of it starts actually
before the pandemic
even came into place
in the states I
think back of all in
November of 19 and just
in December 2019 just
thinking about how we
were we heard about
this virus in China
and we were trying to
figure out is it going
to impact us what's
our plan and I look back
over the last couple
years and I think
about what have I
learned well I learned
that expect the unexpected
I can learn that
there is actually
inherent good in people
I also learned that
what are your priorities
so look over the last
two years and recognize
that personally
when assigned a
task or there's
an opportunity to help my
fellow person I
want to jump in
unfortunately at times
I may have that tunnel
vision and I may
forget about what's
actually truly important
so look back at the
pandemic and as I
mentioned I kind of go in
chronological order
here so late 2019 we
start planning you know
myself and my colleagues
in the pharmacy
department start figuring
out what drugs do
we need to start
stocking up on what
supplies do we need to get
Where are we
going to store it?
You know, fast
forward a few
months into
November, I'm sorry,
into early 2020,
we start getting
reports from
our friends in
New York and
our friends in
California about
what to expect.
So we'll start stocking
up on midazolam,
start stocking up on
propofol, start stocking
up on fentanyl. So
we start doing that.
We start planning
for something we
think is going to
hit us, but we don't
know how hard it's
going to hit us.
So again, the
laser focus and the
tunnel vision on
what we need to
do to take care
of our patients.
And as I mentioned,
we were expecting. So
looking back at November
and December 2019
is when we found out
we were going to have
a beautiful little
girl. Well, we
didn't know at
the time it was
going to be a girl,
but we found out
we're expecting
in July of 2020.
But all my intention
was going towards COVID.
Fast forward to,
I think the date
has been said a
couple of times, but
I do distinctly
remember March 13th,
I remember at a team
meeting, we talked
about what if we have
to go remote? What if
the school shut down?
What is our plan?
It's a beautiful plan.
We wrapped up the
meeting at 3 o'clock.
3.15, the
governor announces
they're shutting
down the state.
Call everybody back in.
We meet and say,
okay, let's come back
with new plans. We'll
meet on Sunday night.
Over the weekend, a few
of my colleagues and
I have been executing
our plans for what
we've been doing over
the last few months of
stocking up on product.
Started calling off
our off-site locations,
all the community
clinics and start
bringing back the product
to the to the main
hospital we spent the
weekend curing product
back and forth getting
it all to the second
level of the ACC or
area E on Sunday night
we meet as a team we
have a virtual call
we go through what is
our game plan we were
able to push about 40
to 50 percent of our
staff remote very quickly
we all the shuffle
around schedules and
identify what was truly
gonna be the essential
staff members that
had to be physically
at a hospital campus
or in the end of the
pharmacies we executed
pretty well again tunnel
vision and we had a
laser focus on this
as we start pulling
all the product into
area e through the
weekend and into tuesday
monday and tuesday
so i remember it was
st patrick's day um
and we were all joking
that none of us were
in green we pulled
in about 300 pallets
weighing each about 5
000 pounds into the
south corner of the
second floor of ARAE.
So just a quick math.
That's 1.5 million pounds
in a very small space.
After we got done
moving all the stuff
in, we realized this
is a really bad idea.
So we called *****
North, our friend in
facilities. ***** comes
running up, and he
goes, oh yeah, this
is a really bad idea.
So we then spend
the next eight hours
calling my wife
going, I will
be home very
late tonight.
Again, focus on the work,
focus on the
patient care.
And I call her
saying, I'm not
going to be coming
home for a while.
*****, myself,
and Russell Finley
spent the next
eight hours moving
300 pallets away
from that space.
We get done about 10 or
11 o'clock that night.
We all just laugh
and go, huh,
wouldn't it be funny if
there's an earthquake?
I mean, this thing
would have fallen in.
Next morning, 7.15,
earthquake happened.
So we realized,
well, we did the
right thing. I
felt validated for
staying at the
hospital way too
late, but we did
the right thing.
We also spent the
next few weeks
just planning for
what was unknown.
I'm a pharmacist
by training.
Numbers are big for me.
The number that
always jumps out at me
during the pandemic
has been 56 million.
So 56 million.
Any guesses?
I can't see
anybody, so...
56 million.
it's the amount of
milligrams of propofol
we would need to
treat 174 patients
that each weighs 75
kilograms or an average
weight of 75 kilograms
for six months
straight on a ventilator
so in our minds
we had to get around
56 million milligrams
of propofol that
was our to-do list
so we did a lot of
work to do that we
didn't get 56 million
so nobody from finance
yelled at me for
blowing our budget.
But we worked with
our colleagues across
the system. We called
the anesthesiology.
We called our
surgeons. What can
we do to switch
things out? We went
old school in the
ORs. We went to gas.
Again, we had
this collaborative
agreement with everybody
to people rising
to the occasion.
People wanted to do
their best. People
wanted to help out.
We were fortunate
we were able to
mitigate some of
the challenges other
hospitals on the
East Coast saw.
We had enough
Rupafil. We were
able to run our
ventilators.
Earl Fulcher and the
group in respiratory
therapy did some incredible
things and learning
how to daisy chain
ventilators together.
We were fortunate
we were able
to take care of
our patients.
But my wife was pregnant.
I wasn't around.
The pandemic is inching
on, and she's
slowing down.
We were fortunate
that her father
was able to come
out and help us out.
So due dates in
July, my father
-in-law, Mike,
who's here tonight,
was able to come
out and help us
out starting in
the middle of May.
So we were very fortunate
to have him around
because he realized
that with two kids or
a son-in-law and a
daughter in health care,
they're not resting.
So he helped us
out with our now
five-year-old and
helped us keep on
the afforded home.
Again, we both, my
wife and I, were
struggling with
our priorities.
She should have
been taking care
of herself. I
should have been
taking care of her,
but we were not.
July comes, we have a
beautiful baby girl.
She is my everything.
I'm just blown away,
and I know many
of you guys have
seen her on Zoom
calls and the infamous
vomiting on me
and many calls have
been well documented,
but she is absolutely
incredible.
But I look back
at the pandemic,
and I realize I
missed out on a lot.
So we get through the
summer, and again,
I was planning on taking
my paternity leave
a little bit later,
so we had plenty of
family in town to help
out appropriately.
Of course, they all
quarantined in a hotel
for a week before
they moved in with us,
rotating grandparents.
It was great. So
my wife had support
at home. I was able to
focus on stuff at the
hospital, and then
I was planning to use
my paternity leave
going into late
October, early November.
Side note, as many
of you guys know,
I have a sister
that works in
healthcare as well.
She's at the FDA.
She was in Operation
Warp Speed. So my
parents are kind of
floored going, oh, wow,
my daughter is working
on the vaccine.
My son is working on
giving the vaccine.
If you know Indian
parents, they're
never proud, but
they were kind
of proud of that
for a second.
They didn't really say
it, but we saw that
nod, so we felt some
validation with that.
we move through
my wife goes back to work
I start taking
some time off to be
home with the baby
and I'm loving it
I'm calling a
decent amount
but then I get
a dreaded phone
call so as I'm
planning for the
vaccines I'm planning
for the monoclonal
clinics down
at South Jordan
I get a dreaded
phone call I remember
it was about 6 o
'clock in the morning
and my mom's calling
my mom never calls
she never calls
at 6 o'clock in
the morning either
it's not my mom,
it's a physician
my dad
he had to have
a test for him
his test was actually
going to the cath
lab he didn't tell any
of his kids about it
he had four blockages he
needed to have
quadruple bypass
and so I'm like,
I gotta get home
so fortunately
Mike, my father
-in-law, comes to
the rescue again
I call him,
how fast can you
get out to Utah
he takes the next
flight out, helps us out
I fly back home to Ohio
and with my dad
and the Indian part
of me, the Hindu part
of me comes out going,
oh man, is this going
to be karma and dharma
and the circle of
life all coming together
at once where I gain
a beautiful daughter
and lose my father?
I don't know.
Fortunately, it
didn't happen that
way. I was with my
father. He got through
surgery. It went
well. He's doing
great now, but I
realized when I was
there with him, I
wasn't really there.
I was focusing on how
do I roll out a mass
vaccination clinic?
How do I roll out a
mass monoclonal infusion
clinic? I wasn't
there with him. I was
missing out on the
I was freaking out on
the flight there to
be with him, but when
I was there with him,
I was not cherishing
that moment because
it could have been the
last time I saw him.
He gets home after
a couple days.
I did share with
some of our hospital
leaders that my dad
was in and out with
a quadruple bypass
in five days, so
we have some work
to do in regards to
our turnaround time
at the hospital.
Again, he was
at an academic
center, so it was...
And I will... I'll
leave that alone.
So my dad gets home.
I hand him off to
my sister, who then
relieves me so I can
get back to Utah.
All I remember is
I'll get my dad really
tightly going, wow,
that was close.
I get back on
the flight, fly
back home, hug
the kids pretty
tight that night
when I get home,
but I go back to work.
I don't even think about
taking my paternity
leave. I put it on
pause going, this is
not my priority right
now. So I was wrong.
We get through
the initial
stages of the
infusion clinic.
I think when the
monoclonal got approved,
I think we did
our first infusion
within 72 hours of
getting approved.
So we're pretty
proud about
that. We're able
to keep those
patients out of
the hospital.
Very quickly
pivot from that
to working back
on vaccines.
Again, myself,
Dr. Jeannie Mayer,
and a number
of others have
been playing for
this for months.
So we knew it was
coming. We just didn't
know the exact date.
We had, I think,
eight or nine plans.
I can't remember
how many times I
presented to our
leadership going, well,
if we have it come
on this day, we'll
go here. If we have
it come on this
day, we'll go here.
It came on the worst
day possible, so
we had to do it in
a tent in the middle
of the back of the
ED in a snowstorm.
But we pulled it off.
I remember the sense
of pride in doing that.
But then realizing my
friends and colleagues
who have been fighting
this for months,
this is their hope. What
can I do to help them?
So a handful of
us, myself, Russell
Finley, Colin
Conley, and others,
we poured everything
we possibly could
into that clinic.
We never left.
So from December
14th through probably
about the middle of
February, I don't
recall leaving. I
was there five to
six days a week
from open to close.
I don't know
what my job was
at that point in
time, but I knew
I had to be at
that clinic.
So I missed
out on things.
You know, I was
prioritizing our
patients over
everything else.
My wife, she's a
trooper. Many of you
guys know her. She did
everything at home.
With a little kid,
now at that time
a four-and-a-half-year
-old and a daughter
was at times six
to seven months
flawed on her
plate without any
help in the
middle of winter
I would leave before
the kids would wake up
I'd come home after
the kids come to sleep
she asked the
only thing I'd do
is that I'd
strip the dirty
clothes leave
them in the hamper
and that I'd take the
overhands with the
little girl because
she was still getting
a bottle in the
middle of the night
it's not a problem
happy to do that
I have no problem falling
back to sleep anyplace
during the middle
of the pandemic make
I realize I hadn't
shaved in a while.
The beard is
a bit gruffier
than it is right now.
So one morning I
thought it'd be
a good idea to
shave off my beard.
So I did.
That night when
I got home,
again my wife
hadn't seen me,
my kids hadn't seen me,
three o'clock
in the morning
the little girl wakes up.
I get the bottle,
I go feed her.
She doesn't stop
crying. She's
freaking out. She's
losing her mind.
She's pawing at my
face and just screaming
at the top of her
lungs. My wife comes
running in going, what
is wrong with you?
Can't you just give
this kid a bottle?
She flips on the
light going, oh my
God, what did you
do to yourself?
She didn't see me clean
shaven in quite
some time.
And she realized, my
daughter has never seen
me clean shaven. And
my daughter, well,
granted, it was dark.
She's feeling my face.
She's like, she
doesn't know this guy.
And I realized,
wow, as much as I'm
trying to prioritize
helping out my
colleagues and my
coworkers and trying
to get back to
whatever the new
normal might be, I'm
missing out on what's
most important?
My family.
I'm not prioritizing
them. It doesn't
matter how much I
do for anybody else.
If I can't take
care of them, if I'm
not there for them,
what good am I?
Went to the hospital
the next morning, and
it was one of those
moments I had to tell my
team, like, I need to
tap out. I need help.
And my team was like,
yeah, we've been
waiting for you
to do this for
months. Why haven't
you asked for help?
Part of it was I knew
how much they were
getting killed I
didn't want them to get
overburdened they're
like no no we all want
to do this and it made
me realize people do
want to help people
want to do inherently
good things and I look
back at the vaccine
clinics and I remember
how many folks is
volunteer because they
wanted to be there
they want to be a part
of it they wanted to
help out not because
they were gonna get a
vaccine because they
just wanted to see
something positive I
remember joking that you
can see the smiles
underneath the masks
and it's really cool
to see that and my team
wanted to experience
that as well and they
also put me back in
my place going, you've
got two little kids
at home. You've got
a wife at home. You
can't always be here.
As much as we want
to try to fight this
pandemic and end it, it
doesn't do you any good
if you're not going
to have anybody
around you at
the end of it.
So it really kind of
forced me to grow up.
You know, at 42,
I finally grew up.
We get past the mass
vaccination stages,
and we were able to
kind of get to more of
a steady state. At
that time, I realized,
okay, I've got to
make some serious
changes and since then
there's been some ups
and downs in my career
and personal lives
but I've learned that
I've been able to
kind of manage them
better part of this is
just recognizing
that the line between
personal and professional
is completely blurred
I think I've heard
plenty of comments
tonight about the zoom
calls the family and
dogs etc all jumping
in there yeah that's
life now I recognize
as I round and check
in my my colleagues
really when I ask
how they're doing it's
I really need to pay
attention what they're
saying you hear
about their stories
about their family, their
spouse, their partner,
their children,
their grandchildren.
Listen to
what's going on.
That stuff is the things
that really matters.
It makes them a better
employee. It makes
them a better colleague
and co-worker.
If they're happy at
home, they're typically
going to be happy at
work and vice versa.
So really, how do I
focus more on that?
I learned that from
myself, just recognizing
I wasn't happy at work
during the vaccine
clinic because I was
missing out on my
kids. And when I was with
my kids, I was missing,
I felt guilty that
I was missing out at
work and not helping
the vaccine clinics.
So really, how do you
kind of find
that balance?
Still haven't quite
found it yet but
I'm working towards
it but recognize
that I need to be
happy in both places
and I got to try to
find that so we moved
past the vaccine
stages in trying to get
to this new steady
state as I mentioned
there's been ups and
downs some career
changes for myself and
I've gotten to a better
place where I can
handle what's going
on in life and what
I've learned from the
pandemic looking back
over the last two
years as mentioned
expect the unexpected
people do want to do
good more importantly
i got to figure out
my priorities and i
think i've got them
better set now and i
know we talked about
music before we came
up here and yes my
summer 99 was awesome
i got to see bob dylan
and uh i'm a huge
dylan fan i've seen
him like 70 times and
paul simon in concert
together all along i70
it was incredible
in addition a lot of
great opening acts
along the way but one of
my favorite songs of
all time is actually
not one from a jam
band and a folk singer
from an alternative
band called Soul Asylum.
David Perner had
this great line in
his song called The
Eyes of a Child.
He said, see the world
through the
eyes of a child.
Big things seem smaller
and old things seem new.
Took my daughter in
the middle of the
night screaming
at me for having a
shaved face to realize
that I need to open
my eyes and look
things differently.
Thanks so much.-
Kavish Choudary
-
-
Transcription
The beginning.
March 11, 2020. The
World Health
Organization officially
declared COVID
-19 a pandemic.
March 13, 2020.
President Trump declares
coronavirus pandemic
a national emergency.
March 16, 2020.
Salt Lake County
Health Department today
declared a public
health emergency in
response to the COVID
-19 pandemic. Immediately
following the
declaration, Salt Lake
County Health Department
issued a health
order effective at 11
o'clock p.m. today,
March 8, 16,
regarding business
operations in
the county, including
specifics for
the food and
beverage industry.
All retail and
service-oriented
businesses are
required to implement
social distancing
measures and exclude
symptomatic workers
from working.
Social distancing
should include
at least six feet between
customers in the
establishment.
Workers symptomatic
with respiratory
illness or fever
must not be
in the business.
No exceptions.
I'm a patient
relations specialist at
the information desk
at University of
Utah Hospital. I
had wanted to be on
the team as a patient
relations specialist
for many years,
and I had to wait
until there was a
position available.
I love my job, and I
love helping people.
A few of my team
responsibilities
pre-COVID,
greet visitors,
direct an ******
to patient rooms,
deliver flowers to
patient rooms, visit
patient rooms to
offer newspapers,
to offer word
puzzles, coloring
pages, and we
had many other
amenities. I really
have missed this.
We would also
shuttle patients to
appointments on
campus if they
had shown up at
the hospital and
their appointment
was elsewhere.
Monday,
March 16, was the
first day changes
were made reacting
to the pandemic
within the hospital
and clinics.
On my way to work
that day I remember
there were no
cars on the road
and I drove past
a sign that said
a no visitor policy
was in effect.
It was such an
eerie feeling and
it gave me a lump
in my throat.
I was shaking.
I was sweating. My
heart was racing.
I felt like I
was in a dream
and that it just
can't be real.
No valet, no
shuttles, no chairs
at all in the lobby, in
Starbucks, or in
the cafeteria.
The lobby gave me
an eerie feeling.
No piano playing by
our volunteer pianists.
It's very strange to
see a place that's
usually hustling and
bustling with people
their chatter, the
music from the piano,
to nothing,
no one, silence.
During the middle
of 2020, there were
some exceptions to
allow family visits.
There was a visitor
policy in effect.
I'm so sorry.
I'm
back on track.
march 18 2020 two
days later came the
earthquake it was
very surreal which
added to my anxiety
and wonder about the
future will there
be more earthquakes
will i get sick will
i lose people that
i love and care about
to this and these
thoughts were
constantly in my mind
something i've always
loved is grocery
shopping i would get
inspiration for cooking new
recipes and buying
some new ingredients
from all the grocery
stores i would go to
several grocery stores
and a shopping visit i
remember after staying
home several days and
needing to go to the
grocery store. We all
wore masks. People
were standing six feet
distancing or more
because we were afraid.
Many shelves were empty.
I had anxiety,
and my experience
had changed drastically.
It had become
an incredibly
stressful chore.
I broke down in
tears when I
got into my car.
going to the grocery
store had become
stressful and was no
longer fun and my work
at the hospital which
was customer service
oriented had become
more challenging
there was a visitor
policy and screening
process for patients
and visitors as
well as employees at
each entrance with
just a few entrances
that were being used
our team grew from
28 to 41 people to
accommodate the changing
responsibilities.
We were essential
employees.
The visitor policy was no
visitors in the
very beginning.
Mothers giving
birth could
only have one
support person.
No other visitors
were allowed.
We, my team and I, had to
ask families to
wait outside.
They were not
allowed inside.
The extreme temperatures
of winter and summer
made it really
difficult to tell them
that they could not be
inside. We would offer
them water and granola
bars just to help.
Several clinics had
canceled their
appointments.
Elective and non
-emergency surgeries were
canceled. The emergency
department was
divided into two
separate departments.
There was one
screening area
that was in a
big tent outside.
Once they were
screened, they would
be directed either to the
emergency room or the
emergency department
area for people
with COVID.
These processes have
changed as needed
as it's evolved. To
this day, we still
have a strict visitor
policy in effect.
During the middle
of 2020, there were
some exceptions
to allow family
visits to say goodbye
to loved ones.
A patient in his 70s
was passing from COVID.
His wife and children
came to say their final
goodbyes. This was
during a time that
COVID patients were
allowed to have family
members by their side
while they were passing.
He was being moved
from the COVID
surge floor to
the medical ICU.
I happened to be at
the information desk
when the family
came in and was able
to ****** them to
the patient's room.
His family had
recovered from
COVID, but he was
not so fortunate.
This was something I was
grateful to
be able to do.
I have compassion and
feel like I'm able
to communicate well
with them given the
difficult situation
they're dealing with.
I guided them onto
the unit and as
we were nearing
the patient's
room the patient
was being wheeled
into his room it
was heartbreaking
I was grateful
that I had been
able to help
them and sad to
witness these
painful moments
as I left them
and I walked off
the unit I was so
emotional I had
broke down in tears
I had thought
about all the
people that were
experiencing this
I hadn't known
anyone really close
to me to be very
sick at this point
Even though I
had known some
people that had
tested positive
Shortly after this
experience, my mother
and father who live
in St. George tested
positive My father
had mild symptoms
My mother was
very sick for
weeks and was
hospitalized as
her kidneys were
shutting down.
We almost lost her.
She was very fortunate
and made a full recovery.
In February of 2018,
I lost my son, Seth,
who has a twin sister,
to an alcohol-induced
suicide on his older
brother's birthday.
I had attended a
bereaved mother's retreat
a few months after
that and met a group
of mothers who had
also lost children.
For my birthday on
March 17th, my children
had given me the
opportunity to attend a
bereaved mother's
retreat reunion in Moab,
one of my favorite
places on the earth.
I was looking
forward to this
and need the
continued support.
This was canceled,
and they have
not yet been able
to reschedule.
Years before my
son had passed, I
had volunteered
for the In Between,
a hospice for homeless,
and had started
to volunteer for
the No One Dies
Alone team when it
began years ago
at the hospital.
This program is to
provide compassionate
companionship for
patients alone at
the end of their
lives. I took some time
away after I lost
my son. It was just
too difficult at
that time to hold
someone's hand and be
present in a way that
they deserved while
they were passing.
I began to volunteer
just before COVID hit.
The volunteer program
was placed on hold
for four months,
and they're still
working on adding
programs back slowly. With
nine programs back,
they're phasing
in another three
between April and July.
There are 25 in total.
Being home with
the exception of
work and a few
grocery store runs
came the realization
that my marriage
was not healthy
for either of us.
I had kept myself
so busy not wanting
to be at home for
so many years, even
before the pandemic.
I found the problems
I had ignored were
no longer easy to
ignore, and I filed
for divorce in 2020.
Many years of hard
work in therapy
and with the support
of family and
friends, I am
making progress in
becoming my healthiest
self that I've
ever been, physically
and mentally.
I've dedicated time
to several suicide
awareness and prevention
classes and events
to help support me
after the loss of Seth.
My time during
COVID gave me the
time and space
that I needed to
grow, and I'm so
grateful for that.
I have since been able
to enjoy my time alone.
I've made my home mine
again and love
being home.
I've realized my
time is precious, and
I'll choose carefully
what I do with it.
I've learned to like
myself and who I am.
As I begin to get
busy and back to
life again, I can
only hope that I
will remember to
slow down a little.
I want to enjoy my
family, grandchildren,
and my close friends that
I've missed for
the past two years.
and I'm in a
new relationship
with an amazing man.
We are in this together
and being in contact
with people who enter
the hospital while
still following masking
and other continued
policies, I find
that we are learning
to appreciate and
respect our differences.
We are resilient
and I hope
we can all
grow from this.
Thank you.-
Terri Berg
-
Meet the Healthcare Stories Team
Gretchen Case, PhD
Megan Call, PhD
Betsy Holm
