I became a full-time wheelchair user after a 20-year relationship with multiple sclerosis.
I purchased my chair four years ago when my legs staged a wildcat strike. I had worked hard to avoid a wheelchair. For years I went for regular physiotherapy at a rehab hospital, worked out on my own at the gym, did yoga and endured painful botox injections to relax my increasingly rigid leg muscles. Walking left me exhausted and with little energy for anything else. Stubborn to the end, I felt defeated when I started using a wheelchair. But I quickly discovered that it gave me back my life.
My chair was heavy and meant for quick trips, not to be pushed around and sat in for much of the day. My posture in it was terrible: My shoulders shrugged forward and my pelvic floor thrust my stomach out in a granny belly. By the end of the day I suffered from numb bum and backache. People who know about wheelchairs cringed when they saw me coming.
Since a wheelchair would continue to play a supporting role in my life, I began working with an occupational therapist to purchase a better one with improved seating. After meeting to discuss my lifestyle demands, she brought in a tricked-out, lightweight titanium chair with - no kidding - flashing wheels for me to try.
This one put the whee in wheelchair. It was significantly lighter and more aerodynamic than my clunky old basic model. Sleek and responsive, it rolled effortlessly down the hall of the OT's office with a gentle whisper of a push. Liberated from the confining structure of my old chair, I felt like a powerful Paralympic athlete surging around a track with arm muscles rippling. Clearly, I commanded the Maserati of wheelchairs.
And then it hit me. I felt green around the gills, so we packed up both chairs and headed home.
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Later that day I took the new chair for a spin at home. Again the feeling of freedom and strength. And after about five minutes the queasiness returned. I went to bed early that night so I would be well rested. But in the morning, after just a few minutes in the new chair, I couldn't deny it any more. I felt car sick.
I've suffered from motion sickness my entire life. In 1970, when I was 8, our family drove from Brampton, Ont., to Florida. I remember very little of this adventure because I spent much of it stoned on Gravol and sleeping it off amid the suitcases in the back of our Country Squire station wagon.
With time I learned a few tricks, such as sitting in the front seat or sitting next to a window. Eventually I outgrew the worst of it, but even as an adult, under the right conditions, I still succumb to that sickly combo of head-and-stomach queasiness.
How could a wheelchair cause motion sickness? I tried the new chair repeatedly over the next two weeks, hoping the nausea would pass as I adjusted to the quicker and more responsive motion. But I could only tolerate 30 minutes before I had to retreat and recover.
There are so many wheelchair users in the world, I reasoned this must be a common occurrence. How did others deal with it? I returned the chair to the OT and came clean about my problem. She'd never heard of it before.
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The OT told my doctor, who has treated about 3,000 patients in wheelchairs, and she'd never heard of it either. She said that eventually I'd probably get used to the new chair, but that I'd feel pretty miserable until I did. Adding insult to injury, the good doctor laughed at my predicament because she figured it would give me something to write about. She knows me well.
Out of respect for my high-maintenance equilibrium, we decided to try something else. Instead of installing me in a top-of-the-line, technological wonder, we adopted the more conservative approach of replacing the offending parts of my clunker chair with ones that would improve my posture and comfort.
Replacing the slouchy back and sagging seat were easy. Now my shoulders were square, my pelvis was supported by a comfy, air-filled cushion, and numb bum and backaches were distant memories. But we hit a snag when we tried to replace the arm rests and foot plates. The sum of the parts was higher than the cost of a new chair. Pimping my ride was not going to be cost effective. Time for chair three. We chose a new version of my first chair, lighter but with more structure than the tricked-out model. It came with suitable arm rests and foot plates, and we used the new back and cushion we had already purchased.
This chair satisfied the OT. My health plan approved of the cost. Best of all, after some tweaking of those troublesome foot plates, the new chair and I are compatible and developing our partnership.
Still, I'm a little disappointed the other chair didn't work out; it was fun to feel like an athlete. Who knew a wheelchair could make you feel powerful? But I guess more bells and whistles aren't necessarily a good thing. That's how I roll.
Joy Manson lives near Fredericton.
Illustration by Jason Logan.