Dec 02, 2020 10:00 AM

Author: Susan Sample, HCI Writer-in-Residence


photo of Susan Sample, HCI Writer-in-Residence
Susan Sample, HCI Writer-in-Residence

“Tell me a story about your day,” asks my three-year-old grandson every time we’re together. It doesn’t matter whether it’s 9 a.m. or 7 p.m. We may be playing with dump trucks and police cars or have just hugged on his way into our home. He delights in immersing himself in the world of story, especially if he’s the central character. Maybe that’s because we’re homo narrans, as communication scholar Walter Fisher claimed: “storytelling animals” who use narrative to order our experiences and give them meaning. We create communities and connect to others through stories. And at the end of life, we use stories to heal.

“Over the years, I came to realize,” writes David Kessler, co-author of On Grief and Grieving with Elisabeth Kubler-Ross, “that there’s a crucial sixth stage to the healing process:  meaning.” When we talk about memories with our loved ones nearing the end of their lives, we overlay grief and pain with richness of a life remembered in stories. “[M]eaning both begins and ends with the stories we tell,” says Kessler in his 2019 book, Finding Meaning. “Healing doesn’t mean the loss didn’t happen. It means that it no longer controls us.”

As the writer-in-residence at Huntsman Cancer Institute, I have the privilege of helping patients, family members, and caregivers, as well as physicians and nurses, write their stories. Cancer compels us all to try to make sense of the disease, the role it plays in our lives personally and professionally, and to find meaning in our experiences. I am honored to witness these intimate accounts of pain and love, joy and suffering. And I am humbled when I am reminded yet again of how understanding evolves slowly. It is not a quick lesson. As Kessler says, “Meaning takes time. You may not find it until months or even years after loss.” 

It’s been more than two years since I worked with a patient I’ll call “Dennis.” He was diagnosed with a late-stage cancer in the spring; he didn’t survive the fall. Yet, the five months he lived with cancer enlarged his life far more than the tumors that made speaking so difficult. He wanted me to write that story for his sons.

I’d thought we’d have at least a week. I met Dennis on a Wednesday afternoon in his hospital room. We planned to talk when he returned for outpatient therapy the next week. Friday, however, his social worker called to say that, based on his new scan, he would be discharged for home hospice. But, the social worker said, he really wanted to talk to me. Could I come to his room right now? I hurried up from the Wellness & Integrative Health Center with my writing cart, stocked with paper, pencils, pens, and books I’d I thought might be useful: Your Legacy Matters and Ethical Wills, among others.

They weren’t necessary. Dennis knew what he wanted to say; he just needed help ordering his ideas and shaping them into a letter. I began typing as he talked. Here and there, I’d ask a question: Did you go on any other vacations together? What else do you remember about watching your son’s state championship? I glanced down at the left corner of the screen: 355 words. Do you want to add anything else? “Just tell them again and again that I love them, I love them, I love them.”   

That night, I transcribed his letter, printed copies on yellow paper, and overnighted them to his home in southern Utah. He died soon after. 

Remembering this still makes me profoundly sad. It also makes me profoundly grateful:  I was a stranger invited to witness the intimacy of another person’s life, profuse with love and gratitude. Yet, Dennis’ life hadn’t always been that rich. He’d told me he’d been “vacant” in his family for many years; cancer became the means to reconciliation. He was welcomed back into his family’s home and their hearts. He’d take the intense pain of cancer any day, he said, for the meaning he and his family had found in the past months.

As I tell this story, I notice I use time to order the events and try to make sense of what happened. That’s our fallback as storytelling animals. This happened and then this and then this…. But one word Dennis chose makes me pause: “vacant.” It won’t leave me, even after two years. Not because of the emptiness of pages I’d helped a dying man fill. Not because of his absence in the lives of those he loved painfully. Not because of the claims to regret, guilt, and shame he finally let go. Dennis showed me how a vacant space can be made full.

If cancer were a story, numbers would be the central characters: tumor markers are measured in numbers, numbered disease stages, diagnoses delivered in months and years, survival probabilities calculated in statistics. But what if we take numbers out of the telling, as Dennis did? What if the story of cancer is told in the timelessness of love? 

Dennis ended and began his story with essentially the same words: Just tell them how much I’ve loved them, always. “Meaning,” says Kessler, “can be found in the life of anyone who has ever occupied space on this planet or in someone’s heart.” Whether hidden among fifty-some hard years or the dazzling novelty of three years’ existence, the details that make up the stories we tell are healing. They replenish us, enriching our lives with the vibrancy of others.

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Cancer touches all of us.

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