A Year Later, I’m Still Wearing Old Shoes
Last January, I wrote about shoes.
At the time, I was gearing up to get a new wheelchair. Those who are familiar with wheelchairs will recognize this process for what it is: absolute agony. From seating to driving to minuscule issues that you can’t pinpoint for the life of you, switching wheelchairs is a monthslong affair that often resembles torture.
Last January, I was dreading the much-disliked seating consultation. I’ve never been good at verbalizing my needs, so a daylong appointment with the sole purpose of identifying what I wanted from this new chair was a special kind of hell.
You’d think that with all my years of writing experience, I’d be good at that kind of communication, but I’m not! There’s a disconnect between my mind and body that makes it impossible for me to distinguish what exactly is wrong. All I know is that something isn’t right. And any assistive technology professionals (ATP) worth their salt will tell you that on its own, “something hurts” is thoroughly unhelpful.
But I survived. The consultation went surprisingly well. My dad had his doubts about the seating option I chose, but I was hopeful. Maybe, if I was lucky, the transition would go smoothly, and my new chair would change my life.
A year has passed. I am still in my old, squeaky, barely-clinging-to-life wheelchair.
It wasn’t that the seating was bad. There are benefits to sculpting your seat to your body, comfort chief among them. No more pressure points! No more ratty washcloths! Sitting in my new chair is like sitting on a particularly fluffy cloud.
Even the fine-tuning was painless. I sat in the wheelchair. My ATP took notes, then absconded with the chair to tweak and tweak and tweak some more. Meanwhile, I binge-watched “Lost” with my dad, sneaking bites of chocolate under my face mask. I think we even took a nap at some point.
No, it was the ripple effect of the seating option. I got the exact same chair. The joystick was different, and some of the features had been updated, but other than that, it should’ve been an easy transition.
The key word, of course, being should’ve.
It turns out that sculpting the seat to your body drastically changes the height of the cushion. I brought the chair home and realized that I was tall. Like, really tall. Normal person tall. I could no longer pull up to my dining table, let alone my desk, which is where I spend a majority of my day.
It took us months to troubleshoot. Could we flatten the seat? Could we adjust the frame of the chair? Could we let some air out of the tires? There had to be something we could do.
In the end, we had to Frankenstein my desk. My dad, genius as he is, managed to secure the desktop to a sewing machine base my mom bought years ago. We haven’t quite figured out the dining table yet — I may just have to lord over dinner guests like a Renaissance lady.
I had to completely redo my desk because my new wheelchair is so tall, and I am… so high up now. the world looks so much different from up here
— brie is on Threads @briehalbers ✨ (@briehalbers) January 22, 2022
With one crisis solved, I moved on to the nitty-gritty details. The speed was all wrong. The joystick was janky, and I was still missing key parts that were supposedly ordered months prior. I was overwhelmed by the thought of transitioning, so I kept putting it off — that is, until I registered for the 2022 Cure SMA Conference.
Finally, I had a deadline. I would be in the new wheelchair by June 1 — or else.
The process is ongoing. Every couple of days, I force myself to spend the afternoon in the new chair. I complain, because what else am I going to do, only to admit that it is, actually, pretty comfortable. I drive like a 15-year-old with a trainer’s permit, but I know from experience that it’ll get easier. I just have to show up — and not run over anyone’s feet.
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Note: SMA News Today 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 other 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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