Switching wheelchairs was more painful than I expected
“It won’t be this way forever, right?”
This has become a sort of refrain for my dad and me over the past couple of years. Whenever we’re overwhelmed, we turn to each other and ask for confirmation.
Whatever we’re struggling with in the moment, whatever has us down for the count, it’s only temporary. And it’s that impermanence, that fleeting state of being, that gives us hope.
Years ago, right in the throes of the pandemic, I started the process of getting a new wheelchair. My goal was to transition to the new chair before driving to Anaheim, California, for the 2022 Cure SMA conference, but it wasn’t meant to be. As much as I hated to admit it, the chair wasn’t ready, so I postponed the change until fall.
Unsurprisingly, fall became the holidays became mid-January. Suddenly, and quite without permission, my upcoming trip to Orlando, Florida, for the 2023 Cure SMA conference became an issue. I had to be in the chair before then. I couldn’t put it off any longer.
Energized by the new year, I threw myself into the transition process. I wasn’t excited. In fact, I was dreading pretty much everything about it. But it needed to be done, and more important, I was looking forward to crossing the item off my list.
On a Friday afternoon, I told my dad I was ready to make the transfer. I’d spent the past couple of days getting a feel for the chair, spending several hours in it at a time. It wasn’t the most comfortable thing in the world, but it wasn’t painful, and I was navigating the house pretty well. It seemed like the right time.
After all, you know what they say about ripping off a Band-Aid.
Assistive technology professionals (ATPs) compare the transition process to getting a new shoe. Things are just going to suck for a while. While I appreciate the metaphor, I’ve found it doesn’t quite communicate the degree of suckery. Switching chairs is like getting a whole new body. Everything hurts, and you don’t know why, and even if you did, you’d still struggle to walk with two left feet.
I went into this transition knowing I’d be stuck with two left feet for a while. What I didn’t expect was the pain.
The seat was fine. The driving, while precarious in the beginning, turned out to be a nonevent. It was the headrest that was causing problems. My ATP had created a wedge that props my head up and allows me to swallow. While it worked great with my old chair, the wedge was now irritating the back of my neck.
Troubleshooting was to be expected, so we did what we’ve done all my life: We stuck a washcloth behind my neck in hopes of mitigating the pain. But nothing seemed to work. Towels, Kleenexes, a random lens cloth I found in the bowels of my desk — I was in pain, with no way of relieving it.
“It won’t be this way forever, right?” I asked my dad. Even he was frustrated, which is saying something, because he’s a rock star when it comes to assistive tech. “Tell me it won’t be this way forever.”
We spent an entire week messing with the thing. I conserved as much energy as I could, scaling back on commitments and even logging out of social media. I was at capacity in every sense of the term.
Then my dad had a brilliant idea. “We should try a different headrest!”
I’ve been using the same rig for over a decade, pieced together from various chairs. I was reluctant to switch for a variety of reasons, mostly to do with eating, but we’d tried everything else. At the very least, it was worth a shot.
To my surprise, the change helped almost immediately. I was still sore, but the pain wasn’t all-consuming. I could think again for the first time in days.
I’m still adjusting to the new chair, and probably will be for several more months. But it seems we’re through the worst of it. Little by little, day by day, I’m emerging from my low-capacity cocoon. I can only hope the change is here to stay.
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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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