Jen Powley was diagnosed with multiple sclerosis at fifteen. By thirty-five, she had lost the use of her arms and legs. Just Jen is a powerful memoir that tells the story of Powley’s life at the time of her diagnosis, and the infinite, irrevocable ways it has changed since. Powley’s writing pulls no punches. She is lively, bold and unapologetic, answering questions people are often afraid to ask about living with a progressive disease. And yet, these snapshots from Powley’s life are not tinged with anger or despair. Just Jen is a powerful, uplifting and unforgettable work by an author who has laid her life — and her body — bare in order to survive.
What is your own ethnicity/heritage?
I am third-generation Ukrainian-Canadian, I am also from Alberta, which seems to think of itself as a country in its own right, but I wised up and moved to the Maritimes. Which was when I was 23.
When and why did you want to be a writer?
I never wanted to be a writer. I liked journalism and the production cycle when I was 23. That’s why I came to Halifax-journalism school at King’s. But after that I did work in disability advocacy, urban planning, and environmentalism. I think urban planning and environmentalism suited me well, but I lost my voice because of my multiple sclerosis. When I say I lost my voice I mean the palate in my mouth dropped so I could no longer pronounce words clearly and my lung strength diminished so my voice is no more than a whisper. Writing was something I could still do; whereas giving oral presentations was no longer within the scope of my ability.
How have you grown as a writer over that time?
I have taken a number of writing workshops and did my MFA in creative non-fiction. Those taught me to“kill my babies”, whichis to get rid of that writing which I think is cute and smart and instead focus on making sure my message is clearly available to the reader.
What makes a good book?
I think that depends on the reader more than the writer. The writer needs to fill what the reader needs.
Is your creative process more 'inspirational' or 'perspirational'?
Perspirational. I made a commitment when I was writing to write or edit for three hours per day every day until I was done. I took Christmas off, but only because my mother refused to be my scribe (she prioritized making Christmas dinner for my relatives over my writing) and as a quadriplegic I can’t write without another person to actually record my thoughts.
When I was diagnosed, there wasn’t a good book about MS that I could just take out of the library and learn from. The only one had a lot religious overtones and it wasn’t what I needed. I did some research on the subject and though there are a few books about MS out there, I thought a really honest book about challenges like what to do when you needed a catheter or was interested in sex was needed. I thought I could write that book. So I did.
What was the most challenging aspect of the process?
The editing. My mentor advised we read a section and cut it in half by the number of words, so take a piece of writing that is five hundred words and make it two hundred and fifty, and then do it again. Those one hundred and twenty-five words should be more poignant than the five hundred.
What was the most rewarding part of the experience?
Taking something I was stressing about writing and having the person I was writing about say “that looks good” was probably the most rewarding. But getting a good book review from someone with MS vies closely for that top honour.
What did you learn during the process?
I learned that people are willing to help you with research or with editing if you ask them for guidance.
How much research was involved?
You wouldn’t know it, the book is a memoir, but I abused my assistants who were doing to Dal for requests for their library card I needed because I ran out of articles. I also checked my medical files to round out my story. I verified a lot of detail with Google and with other family members.
How did you feel when the book was completed?
Unsure. Did I have the right ending? Did it end too happy? Are there more events I should have included? What if people get mad at me for certain comments I made?
I think when I thought I finished I was at a bit of a loss. Was it long enough?
What has the response been like so far from those that have read it?
So far the response has been good. The response I got from a guy with MS was really touching, all he really said was that the book I wrote was very honest and I had to agree, that’s what I wanted—honesty.
Why is it an important book?
It is an important book for anyone working or advising people with disabilities to read because it is raw, it is the truth about what people with disabilities deal with.
What's next on your creative agenda?
Rest. I have very creative dreams.