How did you get into narrative medicine?
One of my friends, Yoav Kaddar [associate professor of dance], said, “I have a friend who’s a palliative care physician and he wants to talk to a writer.” I didn’t even know what that was, so I went to my computer and typed in “palliative care.” It’s an area of medicine for people who are terminally ill. This doctor was working with a patient with ALS. He couldn’t type or write but wanted to do a memoir. So he asked if I could help him. It turned out the patient was Jamie Shumway, who was associate dean for medical education at the School of Medicine. I had worked with him for the last 10 months of his life, and we ended up with a full rough draft of a memoir, top to bottom. And he asked his wife to start reading it to him as he was getting sicker and sicker. I was supposed to go over one day, and I got an email from his wife. She said, “I’m sorry to tell you, you don’t have to come. I finished reading the memoir to Jamie yesterday and a couple of hours later, he died peacefully at home.” She said she thought it was a wonderful review of his life and he was ready to let go.
What happened next?
I started getting emails — “You don’t know me but I know you from Jamie’s memorial service.” I got to talking to those doctors and one was another palliative care physician, Dr. Carl Grey, who had this idea that we could improve. He was interested in the outcomes for patients if the doctors had their whole story. That’s a side that I think doctors are hungry for, but you’re not going to get that by spending 10 to 15 minutes with a patient at an appointment. That’s where my research with the Cancer Institute came in. ... I was meeting with patients asking for their life stories as they were getting chemo treatments. They told beautiful things. It was humbling, knowing someone who’s going through cancer and chemotherapy and how they could just tap into these stories. You could see the joy that it brought them.
What are the typical patient responses to their stories?
We did a survey that told us that each patient shares their story with an average of four people. We had one woman who said she made copies of her story and shared it with everyone at the Walmart in her little town. Each story was around six or seven pages, too. That alone tells me what that story meant to her.
How has this research affected you?
My younger brother was diagnosed with cancer. ...The patients I worked with taught me how to help my brother. He’s so focused about being present in the moment and I really admire that about him. We all know that any of us can go at any time but when you get cancer, you pay attention to that and the “right here” and “right now” is real. They’re focused on living in the moment, and that’s a lesson for all of us.
What were some of the more common themes of these stories you were getting?
The No. 1 theme people would talk about is work. They all wanted to talk about what they did, and they did everything from bus driving to manual labor to being an administrative assistant. It made me think about how close our identities are to what we do for a living. The second most common theme was food, and my brother helped explain this to me. When you’re on chemo, your tastes change. My brother and I like to drink copious amounts of coffee. But right after chemo, he didn't want any. He thought the taste was too metallic. What I realized was it wasn't just food. It was remembered food, right? It was the way something used to taste. Food has an attachment to memory.
Most of these patients are terminally ill. Are there instances when you don’t get a story finished on time?
That’s the saddest thing that happens, when I wouldn’t get a story turned around in time and the patient would pass away. Luckily, I was able to get those sent to the families. Often, they’ll be read at funerals and the family will comment about how they didn’t know something about the person that was mentioned in the story. That was always cool to find.
Do you have any favorite stories that stick out?
I love all of them for different reasons. Lacie Wallace’s story – she went through all that paperwork to make it a public story [as told by West Virginia Public Broadcasting]. She was a very young woman, a little younger than me, but close enough in age where I identified with her very much. She was an artist in her own right. She smiled a lot and kept being a mom, even as cancer worked its way in. But the cancer was never the main focus of her story. It was the way she was connected to her community of artists and the way she talked about art. So I would say she probably had the most impact on me but I can honestly say that even the quietest people – the ones who say, ‘I don't really have a story to tell’ – do have a story to tell and you get things out of them that really impact you.
