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Suzan and John Jennings knew their relationship would never again be the same when he had to help her go to the bathroom and clean up afterward.
“She was no longer my bride,” says John. “I was now her caregiver.”
That’s because Suzan had become practically immobilized by Guillain-Barré Syndrome, a rare autoimmune disorder of the nervous system that afflicts only one or two people per 100,000.
They’ve chronicled their three-year journey with the disease, and the effect it’s had on their marriage in a book, Paralyzed Without Warning: A couple’s journey back from Guillain-Barré Syndrome, to be published this month.
John was a manager of hotels, Suzan busy with her own career in sales, when, in the spring of 2008 she started to notice some tingling in the left side of her face. By the next morning the entire left side of her body was numb, like her leg had fallen asleep.
After the symptoms persisted for a few days, she went to her doctor who told her she was working too hard, she needed to relax.
Later that week, as she was on her way to a physiotherapy appointment, she fell flat on her face into a snow-filled mud puddle. Her entire left side felt like a wooden plank.
“This isn’t right,” Suzan insisted.
The next day, she was completely paralyzed and having trouble breathing.
John carried her down the stairs of the Vancouver hotel where he was the live-in manager at the time and whisked her to St. Paul’s Hospital.
“Neither of us knew what we were dealing with,” he says.
At the hospital, doctors barraged her with questions; had she been traveling? had she recently received any vaccines?
“I was scared,” says Suzan. “There were tears coming out of my eyes and I couldn’t wipe them.”
Doctors eventually told her they suspected Guillain-Barré, but they’d have to confirm their diagnosis with a painful spinal tap to measure the level of enzymes in her spinal fluid. It took them five attempts to get the sample they needed.
“It’s ferocious,” says John of the disease claiming his wife. “All of a sudden you’ve got to deal with a lot of things. We didn’t know if Suzan would live.”
Suzan spent six weeks at St. Paul’s receiving treatment with a highly-refined blood product to help flush out the toxins destroying her nervous system. When she was well enough, she was transferred to GF Strong Rehabiliation Facility for three months of intensive physiotherapy.
“I was a vegetable,” says Suzan, who admits there were times she felt like giving up. “I was ready to go. I’d lived a great life, I had accomplished a lot.”
But the resolve of her husband, and the support of friends in the hospitality industry kept Suzan going, filled her with determination.
The couple moved to New Westminster, where John took charge of the Inn at the Quay.
Unable to work, Suzan channeled some of her energy into the community. She became a member of the city’s special services and access committee and the master transportation plan advisory committee. The Jennings were fixtures at Chamber of Commerce events. They were invited to give a presentation to medical students at UBC, embarking them on a path of advocacy and support for others whose lives have been touched by Guillain-Barré.
All along, the couple kept meticulous notes, recounting anecdotes on a voice recorder, chronicling funny moments on notepads, snapping photographs. Friends told them they should write a book.
Her darkest moments behind her, Suzan concurred. The project infused her life with renewed purpose. She was hopeful her story could help others who’d been afflicted with Guillain-Barré, and maybe open the eyes of the medical community which hasn’t much experience with the disease.
More importantly it gave Suzan and John a shared direction, a reason to cement their partnership that had teetered on the brink a number of times from the pressure and challenges of their new dynamic.
“If we’re doing this, it’s going to be from a couple’s perspective,” says Suzan, who’d been told by a nurse early on during her disease that her marriage was unlikely to survive. “We want to give inspiration that you can get through these rough patches.”
Writing their book hasn’t been easy. In fact it’s taken them more than two years, as Suzan still doesn’t have feeling in her hands, and her vision has been permanently impaired.
“It’s forced us to work together on many things,” says John, who retired from the hotel business in March, allowing the couple to move to a new home in Parksville in July.
“Every day is a struggle to find our role, our place,” says Suzan.
• Paralyzed Without Warning is available through www.trafford.com, or contact the Jennings at firstname.lastname@example.org.