Halifax author with multiple sclerosis dictated memoir line by line
Jen Powley can't type, or hold a pen, or speak clearly, but that didn't stop her from writing Just Jen
When it came to writing a memoir about life with multiple sclerosis, Jen Powley had to dictate her story to an assistant line by line. In some cases, when her voice was particularly weak, she had to spell out each word.
Powley, 39, was diagnosed with multiple sclerosis — an autoimmune disease of the central nervous system — when she was 15 years old.
Today it means the Halifax woman can't use her arms or legs, and needs help performing basic functions. She uses a power wheelchair to get around, and she's legally blind.
But Powley can write — with a little help.
For three hours a day, Powley dictated to an assistant who would write down each sentence and then read it aloud to ensure there were no mistakes. The assistants got "smarter" over time, Powley joked.
Powley can still speak, but she pauses between phrases and her words can be difficult to understand. However, her mother, Barbara Morris, who was visiting Halifax from Alberta to celebrate the book launch, is still pretty good at deciphering what Powley is saying.
"Your arms are ... narrative? definitive? D-E-C, oh — decorative," Morris said, while helping translate a conversation about Powley's mobility. "The arms are decorative. Got it."
"I'm profoundly deaf so we work really well together," Morris said, laughing. "You should see us do crossword puzzles together."
Powley, also laughing, added that her mother gets to hold the pencil, so if they disagree on a word Morris "just doesn't write it in."
Powley's book traces her life story — relationships, travel, career — as well as the progression of the disease.
She said her brother-in-law noted that he's learned more about progressive MS "than he really wanted to know," thanks to her book.
"Yeah," she added with a smile, "I have too."
Powley said she hopes the book, which she wrote while pursuing a master of fine arts in creative nonfiction at the University of King's College in Halifax, teaches readers that people with severe illnesses and disabilities "still have dreams."
In the short term, her dream is to sell enough books to warrant a second printing.
"I'm pretty proud," Morris said of her daughter. "I think she's a pretty amazing woman."
Listen to excerpts from Just Jen:
With files from the CBC's Information Morning