To move the cursor across her computer screen, Lauri L. Wolf leans back on the headrest of her motorized wheelchair and turns her head left or right. As many as eight hours a day for the past two years, Wolf dictated her thoughts until they filled the 151 pages titled The BS of My MS - a memoir she wrote without the use of her hands.
To move the cursor across her computer screen, Lauri L. Wolf leans back on the headrest of her motorized wheelchair and turns her head left or right.
“Wake up,” she says through a headset, launching the voice-recognition program to start speaking what she can no longer type.
As many as eight hours a day for the past two years, Wolf dictated her thoughts until they filled the 151 pages titled The BS of My MS — a memoir she wrote without the use of her hands.
The 52-year-old Upper Arlington resident suffers a severe form of multiple sclerosis that has left her a quadriplegic, a prisoner in her own body.
Throughout her 18 years with the disease, she hasn’t found any books that address topics more personal than scientific — especially about her primary-progressive MS, which affects 15 percent of MS patients.
She decided to write one herself.
As a pharmacist, who maintains her license by taking continuing-education courses, Wolf felt a sense of obligation to share her knowledge of the neurological disease. In the self-published book, she openly discusses her physical and emotional challenges, writing about depression and an entire chapter called “When the Levee Breaks: Loss of Bladder Control.”
“It’s a very undignified disease, anyway,” she said. “You’ve been stripped of so much privacy and anonymity.”
For four years, Wolf struggled with mobility but largely ignored the warning signs of MS: blurry vision, slurred speech, the time she was stirring a pot and suddenly dropped to the kitchen floor.
Police once pulled her over after she picked up her daughter from school because a parent who had observed her unsteady walking assumed she was drunk.
She received the MS diagnosis in 1999 and, eight years later, learned that she has the subtype that treatment can’t slow. The disease has no cure, but most patients, unlike Wolf, have good days and bad as their symptoms relapse.
In the book, written with the help of an editor she hired online, Wolf dedicates some chapters to describing physical challenges such as muscle spasms and trigeminal neuralgia, a rare condition that produces excruciating nerve pain in the face.
In others, she discusses her role as a single parent of three children, now 22, 19 and 15. (Wolf, who divorced once before her diagnosis, said MS wasn’t a factor in her second divorce shortly thereafter.)
Writing, she says, has given her a new purpose in the face of a disease that has taken so much away.
Determined to record her thoughts, she would ask aides to awaken her earlier so she could write for as long as possible — until her voice gave out or it was time to be helped to bed.
Madison Wolf, who has long admired her mom’s attitude, has seen her confidence grow as she reflected on her challenges in writing.
“I think that it made her proud of herself, for how far she’s come,” said Madison, 15, a freshman at Upper Arlington High School. “She knows that if she can get through that, she can get through anything.”
Wolf wants to write a second book focusing more on her disability, sharing information about strategies and equipment she uses for daily tasks.
She is encouraged that the first book has received positive response from readers such as Mitchell Sturgeon, who blogs about his primary-progressive MS.
In a review on Amazon.com? , the resident of South Portland, Maine, wrote that The BS of My MS is “the MS book that I’ve been waiting to read.”
Sturgeon, 49, said the book allows readers to appreciate how Wolf copes with her circumstances, striking a balance between truth and inspiration.
“Nobody would want to be in her shoes,” he said. “Yet, after reading her book, you feel that you might be able to survive if you were.”