A writer helps people with chronic illness regain power over their stories—and their lives.
Disease can twist a life’s story off course, imposing its own murky plot. The shift is stark and defining—there is everything before you got sick and everything after.
That’s why Austin Bunn created the Patient Voice Project, a creative writing program that has helped people with cancer, mental illness, and other chronic conditions recover control of their stories and their lives.
“By and large, the narrative of illness is totally passive,” Bunn says. “Your doctor tells you something, you show up for treatment when told, you don’t know why some things work and others don’t. We ask people to look for agency and choice within that experience.”
A New Jersey native, Bunn came to the University to study fiction in the Iowa Writers’ Workshop, but he sought a break from the cloistered work of writing. The Patient Voice grew in part from his own experience.
“As a kid, I had surgery at the Children’s Hospital of Philadelphia, and I remember feeling like I wasn’t able to talk about what I was going through,” he says.
“Austin realized a natural connection between two of Iowa’s greatest strengths—the Writers’ Workshop and UI Hospitals and Clinics,” says Leslie Finer, director of the University’s Arts Share program, who helped Bunn secure startup support from the Office of the Provost. “He put incredible energy behind the idea and was committed to finding the funding and connections to establish and sustain it.”
Bunn developed a curriculum and recruited fellow MFA students as teachers. Since 2005, he and colleagues have provided individual and small-group writing instruction to nearly 100 participants, emphasizing pivotal benchmarks from life before and after diagnosis.
“We ask students to identify peak experiences, positive or negative, from their whole lives—parents getting divorced, falling in love for the first time, dropping out of school,” Bunn says. “Then they do the same thing with their illness.”
The approach yields perspective on disease and strategies that confront it. “Our first writer was 40, a mother of two, diagnosed with a stage IV brain tumor,” Bunn recalls. “She wrote about building a house with her husband, then about going to Texas for radiation therapy and recuperating in an EconoLodge. That became her focus—how do you get strong when you’re so far from home?”
In response, the woman wrote about treating herself to three-course meals before bouts of radiation. Reflecting on small luxuries and big decisions—firing a doctor, for example—reminds patients of their choices, including how to present their stories and themselves.
“The Patient Voice isn’t just about creative writing classes,” Bunn says. “It’s about repairing people’s stories so they can better tell them to their families and friends, and to their doctors.”
Grants from Johnson & Johnson, the Society for the Arts in Healthcare, and Humanities Iowa have expanded the program, and Bunn is developing an anthology of patient work targeted especially at health professionals and writing teachers who’d like to replicate it.
Bunn graduated from the Writers’ Workshop in 2006 and this year completed an MFA in playwriting. He’s moved to Louisville, Ky., to teach and write, but the program he launched lives on. Arts Share continues to administer the Patient Voice, and Workshop student David Fleming has taken over as coordinator.
The program has shaped Bunn’s writing. “When I write fiction, I’m more attuned to a character’s state of mind and choices,” he says. “I’m used to hearing patients describe everything that happens to them, then asking, ‘Yeah, but what do you get to do?’ I do the same with characters.”
Through their work with the Patient Voice Project, Bunn and fellow instructors become characters in their students’ ongoing stories, and the impact of their choices may linger long after the classes close. The experience is profound and sometimes even daunting.
“You realize you’re meeting people during what may be the most intense experience of their lives, helping them tell others about it and get power over it themselves,” Bunn says. “It’s some of the best teaching, some of the most important teaching, I’ve ever done.”
Story by Lin Larson; Photo by Tom Jorgensen
Sept. 4, 2007