Reflections on my power chair now that I can’t use it

Last week, I had a bump in navigating my Friedreich’s ataxia (FA) road. The wheelchair I use because of my FA symptoms went offline.

I use a Whill C2 wheelchair, and I love it. I’d love not needing a wheelchair a hell of a lot more, but a Whill works for me and makes life much easier. Although I’m still slow, I can do my daily tasks faster in a power chair than in a manual one.

About a month ago, I was watering my plants outside when I got water in the wheelchair’s control pad, where the joystick is located. Panic momentarily set in as I watched the water seep down into the pad. My wheelchair kept on working, though. I was oblivious, thinking I’d escaped any danger.

As I was heading to bed that evening, my wheelchair became glitchy and cut off repeatedly. By the next morning, it wouldn’t power up. Luckily, I got the repair guy to come to my house. He replaced the control pad, and just like that, I was back in business.

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Starting the process that’ll lead to me relying on a wheelchair

A couple weeks later, it conked out again. And the repair guy came out again. This time he left with my Whill, unable to figure out what was going on, but thinking it probably has to do with that water. As I write this, I’m on day six with no Whill. They’re working on it, but I’m not sure when they’ll figure things out.

I’m writing from my old manual wheelchair that we held onto for just this kind of problem. If you don’t have a backup wheelchair, many medical supply stores rent them.

I’ve had a Whill for about five years. It’s startling to me how much the ease of my daily life is built around that wheelchair. I can still do things in my manual chair, but the activities of daily living are harder.

Our bed, for example, is so high that I need a standing pole to help me transfer into it from the wheelchair. I can manage this transfer by myself in my Whill, but I can’t do it safely with my manual chair; it moves, the footrest is too narrow, and my control over where my feet are is too limited. Right now, my husband is hoisting me up.

Feeling unsafe and less than competent in my manual wheelchair, I had to reschedule activities outside my home this week.

I need a wheelchair, but words matter

I’m not bound to my Whill; my Whill gives me freedom. Even though my manual chair feels much less adequate in comparison, it’s freeing, too. If I didn’t have a wheelchair at all, I’d be lying in bed or sitting on the couch all day. My manual wheelchair enables me to move throughout the house. That’s why I and many other wheelchair users hate the terms “confined to a wheelchair” or “wheelchair-bound.”

Additionally, I find the terms define me in relation to my wheelchair. I can think of a hundred ways to define myself, hence the title of my column, that have nothing to do with my wheelchair. “Columnist” is one I’m happy to be called. I’m also good with “wheelchair user” to describe my mobility, but that’s not how I define myself.

This afternoon, I plan to capitalize on the freedom my manual wheelchair provides. Wearing my gardener hat, I’ll be planting myself presents, aka snowdrop bulbs, for next spring.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.