Ginger Brodie feels like she lost a year and a half of her life while battling cancer. The painkillers she took during treatment (which included chemo, radiation and a stem cell transplant) blocked much of her memory from that time. But, now, thanks to Writing a Life, a writers’ workshop created by staff of the Abramson Cancer Center (ACC), she is able to retrieve some of these memories through writing. “You lose control of your life with a cancer diagnosis,” she said. “The writing group gives it back.”
Writing a Life allows participants – all of whom are cancer patients receiving outpatient treatment at HUP – not only to write about past experiences but also share them with others who have fought cancer themselves, in a safe environment. Up to 14 patients participate in the workshop, although the numbers and participants fluctuate.
Writing a Life sessions are held in Kelly Writers House (KWH), a Victorian cottage on the University campus. Built in 1851, the house served as the original home of the University chaplain. Its warm, cozy features include large windows allowing the sunlight to stream in, beautiful woodwork, and stained glass windows. “This environment is perfect for this group.… It’s so relaxing,” said Sandy Blackburn, MSW, patient navigator, who worked with Matt Stevenson, LCSW, clinical social worker, and Laura Kotler-Klein, DSW, LCSW, social work coordinator (all in ACC’s Patient and Family Services) to create the program. And more important, “it’s not a place where they receive treatments.”
With support from her director, Heather Sheaffer, LCSW, Blackburn reached out to Al Filreis, PhD, director of Kelly Writers House, about the possibility of connecting patients with the writing expertise at the House. Filreis took it one step further – he offered to hold the workshop at the House. “At the time, we were running about 190 percent capacity with programs. I could not take on another,” Filreis recalled. “But, within five minutes, we were ready to do it.… I was moved by the unprecedented collaboration” between the University and the Abramson Cancer Center.
Arielle Brousse, the director of KWH Development, originally led the group, but Deborah Burnham, PhD, associate undergraduate chair in Penn’s Department of English, eventually took over the role. “I received an email about the workshop and was immediately interested in being a part it,” she said. “There’s tremendous research about the positive effect of expressive writing of people who are ill or dealing with a problem.”
For each workshop, Burnham chooses poems that might resonate with the group’s personal experiences with cancer. At the start of each meeting, the group sits in a circle and various people read lines from the poem she brings. “It helps because they’re taking someone else’s experience but thinking about it in terms of their own,” she said. “I’m always surprised at the power of the experience. The gift is that it happens over and over.”
At one session, they discussed the word “survivor” and decided it didn’t really fit who they were. “We played around with a word that matched what we felt and what we went through,” Brodie said. “We came up with ‘cancer schlepper.’ I’m still getting treatment, I have side effects…. I’m living with it.”
Brodie gets “inspired” by the poems she hears in the group sessions. “One poem spoke about the aliveness of walls in the hospital,” she said. “When you’re in the hospital, stuck in bed, you become aware of things like this. When I heard the poem I thought, ‘I experienced that too.’
“I’m very open to talking about things on my mind, like ‘Am I going to die when going through treatments?’… but am I ready to say that to people I love?” Brodie said. “In the group I can talk about things that are tucked way back in my mind, and when they come out, it’s a relief.”
Blackburn said she, Stevenson, and Kotler-Klein make sure at least one attends each workshop for “emotional support. There may be tears -- but always laughter -- at the sessions.”
After the initial group reading, the participants separate from the circle to work on their individual pieces – Brodie loves sitting in a comfortable chair by a window – and then they regroup. “We invite people to share their writing but they don’t have to. Sometimes a person might want someone else to read the piece,” Burnham said. “I think it’s a wonderful, bonding experience.”
Since its start in January 2015, the workshops have received “tons of positive feedback from patients,” Blackburn said. “In February, it was below freezing and we had a full house.… Patients keep coming back.”
Based on the success of this group, Blackburn said they hope to form a second group to meet at the Perelman Center for Advanced Medicine, which is more easily accessible by car than the Kelly House. Burnham plans to lead both groups. “I will continue there indefinitely. I’m committed to the group.”
“It’s all about conveying the power of writing,” Filreis said. “It is through writing that we understand our lives.”