The Value of Expressive Writing on Quality of Life and Facilitating Advance Care Planning: A guided exercise for patients with cancer

A two year pilot  with generous funding from Benedum Foundation, WVCTSI, and other sources. 

 Read or listen to the story about our collaboraton at West Virginia Public Radio. 



How I got started in Narrative Medicine:

Jamie Shumway, who suffered from ALS, wrote a memoir, Off Belay: One Last Great Adventure. I was lucky to get to help him. These kind of projects are often considered "Narrative Medicine." They combine literary acts as part of medical care (among other things). Here's a bit about our process together.

About the Process:

When I first met Jamie, he entered the room in a highly mechanized wheelchair that he operated with a joystick positioned near his chin and manipulated by movements of his head and mouth. He could move forward and backward in the chair, and position the seat so that he was tilted, raised, lowered, or more upright. Later, as I got to know him, I teased him about his racecar driver-like abilities to maneuver his chair. When I first met him, his frame was gaunt and still, and his blue eyes twinkled with life from behind the lenses of his glasses. His voice lacked full breath, and he spoke in a loud whisper.
    He wanted to write a memoir.
    Although I write, and I’ve published, I’ve never done this kind of work before, unfamiliar and unknown territory, and I had no idea if I could be successful in helping Jamie. What he gave me was a challenge, and I have to admit, I love a challenge.
    First, I read nearly 500 pages of transcripts Jamie had previously produced with the help of friends and family, which is integrated with a 40-page outline Jamie created on the outset of his memoir idea. It’s an intense document; the first 44 pages are mostly ancestry and family history, with just a bit of Jamie’s boyhood interspersed. He has captured so much of his life, and his life teems with material for stories.
    Some writers come to the page writing about things outside themselves, but I came to writing pulling from my own experience, rarely stepping outside myself for material. So Jamie’s project quickly presented the challenge of getting out of my own head, my own ideas, and jumping headlong into the pages of his transcripts to understand and start to internalize his memories, his stories, his way of telling them. Even when a writer writes about things outside herself, there’s the writing persona that she crafts. But to help Jamie accomplish what he wanted, my first and ongoing task was to figure out how to get my own ego out of the way. I had to learn things from Jamie’s perspective—the words he would use, the sayings that are his, the ways in which he thinks—and to scalpel out the voice that is my writing voice.
    This is not to say I didn’t use the things I’ve learned about writing. In fact, I had to use all the things in my writing bag of tricks, but not in the traditional way. And so my first task was to start the book with a clear sense of Jamie’s voice, which meant the pages of ancestry and family history would have to be reworked so that we could firmly establish Jamie’s persona on the page from the get-go. We talked about this, and Jamie took a chance on my recommendation. And in this way, we started to take all the groundwork he laid with the help of others and shape it to make the kind of narrative sense that memoir demands.
    We started with weekly meetings, but soon increased that to twice a week meetings in order to quickly assemble the working draft of the memoir.  One of the hardest things to do in writing from personal experience is to discern what to write about—what to cut and what to keep. His book, in its current draft, is over 270 pages but less than 300, a good length for publication. But there were stories that didn’t get told in order to keep it at an optimally publishable length. These, of course, were careful negotiations. I made recommendations, but ultimately the book and all the decisions are Jamie’s to make.
    Twice a week, I brought material put into rough stories, and we would read these, sentence by sentence, word by word, tweaking, reworking, adding, deleting, researching, addressing, explaining and all the other things that must be done with drafts. Some days Jamie would have many edits, or even whole new ideas to share. I called these “off script” days and they produced some of my favorite sections of the book. We explored the idea of underlying story, and I used an analogy from the novelist Nancy Zafris. She draws a rudimentary fish, with an arc over for the top and an arc under for the belly, crossing the two to make the tail. This represents the top story and bottom story of narrative, and how they cross at the writing’s end. So we often talked about “the underbelly of the fish” and Jamie added reflective sections that really brought out his philosophic side with quiet, compelling insights.
Occasionally, I would take the notes from our sessions and come back with something really right (usually on a second, third, or fourth try), and Jamie would be visibly moved by what I read to him. It was a satisfaction I’d never experienced before in writing. I think writers want to move people, and be emotionally potent on the page, but we rarely, if ever, know if our work has genuinely touched someone. To be able to share with Jamie my craft, I got the experience of both writer and reader together, and when he would laugh or cry, when he was clearly transported back into his memory, he reminded me how writing can be pure magic. It’s easy for a writer to get so concerned with professional ambition that the magical quality that first drew her to writing can get lost. For me, with Jamie, the gift he gave me as we worked included remembering all the possibilities that the written word offers to us as people engaged with the world.
    Revision is literally “re-seeing” but in our case, it is re-hearing, too. We comb through the sentences and passages as we work to make things accurate and precise. Others help us to copy edit, always an important aspect, and we continue to polish. Betsy, who has a keen mind for detail and an uncanny ability to draw forth from her memory, will be our fact checker. Other writers and editors from the publishing world have offered sage advice, book marketing examples and tips, and many other forms of help so that when this manuscript is ready, we can start the process of publication. I am reminded that books are made from the efforts of many people. There is a lot of satisfaction is this work, in taking the dream of a book and pushing it towards the physical object others might read and enjoy.
    For me, I will always cherish the days I had the chance to work with Jamie, and how we became friends. I cherish that I’ve been embraced by his family and his friends. Art creates its own kind of intelligence, and writing gives us the voice we didn’t know we had. Often, writers feel alone in their work, but working with Jamie has been all about sharing, about connecting and about helping him create his book.
    The first chapter and then the epilogue were written last. Jamie and I decided on a technique called bookends, in which he introduces himself in the present, and then finishes with a present-day description of why he chose to write his memoir. It’s only fitting to give these sections that present-tense feel, as Jamie has often shared that living in the present is one of the best ways he has found in dealing with his disease. He leaves us with a good reminder to make the most of our own present, and to share the present with those we care about. Jamie’s book is the blueprint to life well lived, time well spent. His voice and stories will be shared for many years to come.