Stephanie Zahrbock lost all sensation and the ability to move or feel anything below her belly button over the course of one month in 2016. The former runner shares how her world changed and how solutions to the challenges she faces can benefit everyone. Listen to the episode or read the transcript.
A sudden and unexpected change
In October 2016, Zahrbock was a healthy 45-year-old. Married with two teenagers, she had completed 25 half marathons and showed no signs of slowing down. That is until she noticed her left foot dragging a bit.
Just the weekend before, Zahrbock ran 22 miles, which wasn’t unusual for her. She had to be a little more conscious of her left foot, but otherwise carried on as normal. Then her left pinky started to lose mobility – Zahrbock noticed it took more effort to hit the shift key when typing. Soon after, at an event at the then-new U.S. Bank Stadium, she recalls feeling “really unsteady” on her feet.
Zahrbock, who’d only had an OB-GYN and an endocrinologist up until that point, decided it was time to make an appointment with a primary care doctor.
Her new primary care doctor at Park Nicolett did a gait assessment and determined Zahrbock needed an MRI, sooner rather than later. That night, she had her first MRI. She was preparing to leave when the tech said her doctor wanted to talk to her right away.
“The doctor had a horrible case of laryngitis,” Zahrbock recalls, so understanding the news was that much more difficult. The doctor said that Zahrbock had indications of multiple sclerosis (MS). From there, Zahrbock went through a series of spinal taps and blood patches to repair damage done by spinal taps. Finally, on Halloween, doctors determined that it was MS. Meanwhile, Zahrbock’s walking continued to degrade, and her mobility was becoming increasingly limited.
“I was in the best shape I could possibly be,” she says. “I went to City Hall to vote. And then on November 6th, I was unable to bear weight on my legs.” Zahrbock quickly lost all sensation and ability to move anything below her belly button. The doctors concluded that this was because of a lesion on her spine, and her diagnosis was adjusted to include the possibility that it could be a condition often associated with MS called neuromyelitis optica (NMO). But, because of her already ongoing MS treatment, the precise cause couldn’t be determined.
Moving forward
Everything has been stable since the fall of 2016, when Zahrbock’s life suddenly changed. Like her exact diagnosis, Zahrbock says the stabilizing of her condition is also a mystery.
The difficulty of adjusting to life as a wheelchair user, however, was no mystery.
“The biggest part was mental, not physical,” Zahrbock says. The mental and emotional journey was far more varied and difficult, she says, than coming to terms with her physical limitations.
“There’s no break from this,” she says. “I will be a wheelchair user and paraplegic all my life.”
Another reality to come to terms with is one Zahrbock is trying to change: She’s found that it’s a common misconception for people who see wheelchair users to assume some sort of cognitive impairment as well.
“People will talk to my husband instead of me,” she says. Zahrbock says she’s experienced this everywhere, from airplanes to restaurants and beyond.
Using her privilege
Despite the adversity Zahrbock experiences frequently, she says she has a lot of privilege.
“I have the privilege of being cognitively unimpaired. English is my first language, and I am a white person,” she says. She advocates for wheelchair users, she says, “because I want to be sure that those who don’t have these privileges can also benefit from them.”
In health care, she notes, accessibility issues are a matter of benign neglect.
Zahrbock says she’s spoken out about wheelchair-accessible scales at her OB-GYN’s office, accessible doors at her urologist and the so-called “wheelchair protocol” with mammography appointments.
“There’s protocol for wheelchairs,” she says. “But just because there’s a protocol in place doesn’t mean you can’t look at the person in front of you and say, ‘Oh wait that doesn’t apply here.’”
Using a wheelchair as a woman … in Minnesota
Most people who use wheelchairs, Zahrbock says, are men in their 20s and 30s. The solutions that work for them are different from what might work for a woman in her 50s.
“My muscles are bigger than they’ve ever been,” she says. But the solutions skew towards people who have more upper body strength.
Additionally, the challenges of using a wheelchair are different for people in different climates. Minnesota presents some obstacles.
“There are lots of things to think about that other people don’t,” she says. Among the considerations Zahrbock faces when going out in the winter are whether or not there’s covered parking, dealing with wheels covered in salt and grit, and finding gloves that withstand the wear and tear of operating a wheelchair.
Opportunities that come from using a wheelchair
“If it’s accessible for me, it’s accessible for everyone,” says Zahrbock. She says that wheelchair users are “a community that anyone can join instantly,” so it makes sense to make accessibility improvements.
“You might be doing work for yourself at some point,” she says. “I never knew I’d be part of this community, but a large amount of us are headed here. I just got here early.”
The experience of suddenly becoming part of the wheelchair-using community was hard on the whole Zahrbock family. But she says that it’s allowed them all to think more carefully about what they do with their time and opportunities.
Both of Zahrbock’s children have opted to take some time to do the things they’re interested in rather than go straight from school to work. “They see they don’t have to work, work, work,” she says. “They can time the time to do the things they want to do. The stuff that makes life worth living.”
