My dad and I both heard the perfunctory snap as the right armrest on my power wheelchair lowered. I was about to get ready for bed on a Friday night, and my dad had just transferred me from my bathroom seat to my chair. As he lowered the armrest so that I could reach the joystick, the cracking sound that came next was an instant red alert.
We both knew something was wrong, and I identified the issue once I glanced at the omniscreen above my joystick. This screen displays the different functions and modes for my chair, and it’s connected to the power button. Needless to say, when the screen cracked, the power button was rendered useless.
And of course, we had a family gathering planned the next day for my nephew’s birthday. Typically, when something like this happens, it’s right before an event, trip, or social engagement. My chair rarely malfunctions when I have nothing going on, such as anytime in the past year. Now that my family and I are fully vaccinated and planning safe outings, it’s only fitting that I encounter an SMA sitcom scenario.
In this particular scenario, I was fortunate that one of my primary technicians is a good friend who’s always willing to help, even when he’s off the clock. He was available that Sunday morning, which meant I would need to get by in my manual chair for the birthday celebration on Saturday.
When I’m in my manual chair, I’m a little like Will Ferrell’s Ricky Bobby in “Talladega Nights,” when the titular protagonist injures himself in a racing accident. Since I didn’t have Tom Cruise there to use his witchcraft to save me, I surrendered to the situation and let my parents push me around for a few hours.
Thankfully, I fit much more comfortably in my manual chair these days than I did just a few years ago. Whereas I used to slouch and sink into the seat because it was too big for me, this time I was able to ease right into it. Nonetheless, I have next to no independence when I’m without my power chair and JACO robotic arm. I have to be driven, fed, and repositioned by whoever is with me. Even using my phone isn’t feasible when I’m in this chair, as I can’t attach my regular tray, which I use to prop up devices like my phone and laptop.
On the plus side, I allowed the situation to force me to take a day off from texts, emails, and any kind of physical exertion. I had no choice but to disengage myself from any kind of commitments, enjoy the day, and rest. With the manual chair, I was still able to attend my nephew’s celebration and see family, albeit with my parents’ help turning me so that I could talk to relatives. The most comical moment came when my niece asked why my wheels were bigger than the ones she was accustomed to.
Following the festivities, I took a nap and spent the evening watching shows and movies. All in all, it wasn’t a bad way to counteract an initially stressful situation. The next morning, my friend came and fixed my power chair within minutes. Another crisis averted in the blink of an eye.
Living with SMA is a constant rotation of situations like this one. It’s just how we roll.
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.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?