How Jen Powley wrote a memoir about living with multiple sclerosis
Jen Powley was diagnosed with multiple sclerosis when she was 15 years old. She needs help with most daily tasks, including writing. The urban-planner-turned-author has written a memoir, Just Jen, which documents what it's like to live with MS and how the disease has increasingly forced her to depend on others.
In her own words, Powley discusses how she wrote Just Jen.
Why she wrote about MS
"I had no desire to be a writer, but when my voice became unintelligible due to my multiple sclerosis, it seemed like a 'good' option. I had been quite happy as an urban planner, but with not having the ability to address crowds or even speak to someone one-on-one, that line of work was impossible. I had to look for something else to do.
"I knew the director of the new creative nonfiction MFA at the University of King's College. It intrigued me, so I applied. They wanted you to have an idea of what you wanted to write. At first I had proposed to write about the people who help me survive with my multiple sclerosis. I am a quadriplegic and need help with most everything. Then I remembered when I was diagnosed in 1993, there were no good books about MS. There have been a couple of books in more recent years, like Waist-High in the World by Nancy Mairs, which chronicles the author's battle with multiple sclerosis, The Diving Bell and the Butterfly by Jean-Dominique Bauby, about a quadriplegic man following an automobile accident, and Hot, Wet, and Shaking by Kaleigh Trace, which deals with questions about sex and disability. I didn't think anyone had covered the whole progression of someone with primary progressive multiple sclerosis. I could do that."
Writing through dictation
"I wrote the majority of the book in my living room in front of the computer, sitting next to my assistant, who did the typing while I dictated. The computer is next to the bay window so I could get a bit of daylight. There is a bulletin board above it where I have posted the seven things I am supposed to think about when I write.
"In the summer, we would go outside and sit next to a house across the street. We were in the shade of a big pine tree. At noon, when my assistant went for lunch, he would put me on the sidewalk under an elm where I would think about the next incident I wanted to write about. When I was finding it hard to get in a flow, we would watch the mice frolicking in the plants. Because of my weak voice, the noise of cars driving by me provided a pause where I could collect my thoughts. If a car happened to park on the street right near us, the sound of the idling engine — besides making my ecologically minded self angry — made it impossible for my assistant to hear me dictate. The noise drowned out my voice."
Finding her why
"The main challenge was that I had to be honest with myself. It's easy to tell ourselves stories of why we did or didn't do things. I had to find the real reasons for why I did or didn't do things, not the convenient answers.
"My mentor through my MFA program asked me to think about who I was writing the book for. When I thought about who I was really trying to reach, it made me rethink some of my writing. I knew that if the book was being written for people looking to get a true understanding of what the journey with primary progressive multiple sclerosis is, they deserved the truth."
Jen Powley's comments have been edited and condensed.