By Carol Keegan, Survivor | Silver Spring, Md. | from Stroke Connection Spring 2013
Last year, I faced a special challenge: How to celebrate the 40th anniversary of my stroke? Jan. 20, 2013, was just around the corner, marking 40 years since a stroke destroyed half of the left hemisphere of my cerebellum. Within that one afternoon, I went from being a 24-year old doctoral candidate teaching a dance class at my university to an inpatient at a teaching hospital relearning the use of my left side.
Four decades later, realizing how fortunate I was to have accumulated so many “post-stroke” years with significant deficits but no recurrences, I wondered whether I had discovered any experiences worth sharing with other survivors.
The idea of developing an expressive writing group composed of stroke survivors soon emerged. In my own recovery, I had relied on deep reflective writing practices like journaling and legacy letters to help me make sense of how stroke had changed my life. I had found the simple process of finding words to convey my fears and resentments softened my fierce need to make sense of the experience. When I sat down to write, the blank page welcomed nagging questions about why I had suffered a stroke at such a young age and how it would affect my future. The more I wrote, the more I discovered inner resources that my pre-stroke self had never been forced to call on.
So I decided my 40th anniversary celebration would focus on finding ways to share expressive writing techniques with other survivors. I decided to develop a writing workshop that would support them through the process of harvesting their individual experiences of recovering from stroke. By sharing their writing with each other during the workshop, they would find a greater appreciation of their own coping skills and more confidence in their capacity to rebuild their lives.
Internet searches did not turn up any ongoing stroke survivor writing groups, but there was a growing body of studies on the health benefits of expressive writing about traumatic events including several studies of stroke-related writing. One metaanalysis of expressive writing by stroke survivors found five recurring themes:
- Feelings of sudden and overwhelming catastrophe
- Loss of control, as taken-for-granted abilities and ways of relating to others are disrupted
- Uncertainty, loss of confidence in the body, and a long lasting fear of recurrence
- Social isolation, as the stroke limits their ability to engage in social and physical activities they used to enjoy
- Adaptation and reconciliation, as survivor-writers come to focus on positive aspects of life they believe they can control
A few years ago, I had taken a course in a life-writing technique called “guided autobiography.” My next step was to reconnect with my teacher, Dr. Cheryl Svensson, a professor at the University of Southern California, to discuss whether the guided autobiography workshop method could be tailored to address the unique concerns of stroke survivors. Thanks to Cheryl, within the month I had prepared the “Life After stroke” workshop for a test run. And thanks to my local stroke association, I soon found an opportunity to pilot the workshop with local survivors.
In March 2012, the Montgomery County Stroke Association sponsored this new pro bono writing workshop for survivors who wanted to explore how stroke had changed their lives. As in the guided autobiography model, the “Life After Stroke” workshop involved a series of meetings where individuals wrote and shared brief essays in response to questions like:
- What was a typical day like for you in the months just prior to your stroke? What were your most important plans and goals in your life?
- In the early days of your recovery, did your medical team expect too much or too little of you? What about your friends and family?
- Did your close relationships survive the stroke? Who got closer? Who got more distant?
- What have been the most difficult losses to accept? How long did it take you to realize your recovery was likely to be a long-term process?
- What are the most important differences between the person you were the day before your stroke and the survivor you are today?
- Suppose someone you care about had a stroke. What is the most helpful piece of advice you could offer them?
Following a series of four sessions, participants in the pilot workshop offered encouraging assessments. Some said the workshop had helped them understand how stroke had reordered their priorities and expanded their attention to the little pleasures in life. For others, the workshop offered an opportunity to appreciate how stroke had deepened their compassion for themselves and others:
“The workshop greatly aided my insights into how writing about my affliction(s) could benefit others who either are experiencing similar situations or could experience these situations. This medium is particularly effective if one has difficulty in articulating one’s feelings. No one wants to be or feel alone — survivor or caregiver.” - Bill Perrick, workshop participant