See the absurd issues of living with SMA; carry on anyway

All the obstacles of a rare disease have made me more adaptable and capable

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by Kevin Schaefer |

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In the 1989 comedy film “See No Evil, Hear No Evil,” the protagonists redefine the phrase “unlikely heroes.” Wally (Richard Pryor) is blind, Dave (Gene Wilder) is deaf, and both are professionals at getting into trouble. When they find themselves at a murder scene and get framed for the crime, the two men have to team up to find the real villains.

It’s hilarious to watch Wally and Dave’s antics play out. Whether they’re in a bar fight, hijacking a police car, or simply failing to communicate with each other, these characters have no shortage of memorable moments. One might assume that their disabilities put them at a disadvantage, but as the story progresses, they find clever and humorous ways to confront various obstacles.

I reminded myself this week of how having SMA helps me manage chaos. After I had a great weekend with friends from out of town, the universe decided it was time for a nice Sunday afternoon catastrophe.

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Complications and lessons

After a transfer from my bed to my wheelchair, my right hand got stuck on my joystick and pushed it back. Thankfully, the chair wasn’t in driving mode, but the joystick motion caused the back to recline too far. This in turn made the back of the chair push against the control boxes and wires that keep the chair functional.

As I leaned back and stared at the ceiling, I sighed as my chair failed to turn on. I thought to myself, “Maybe I should have taken a longer nap.”

From there, my parents transferred me to my manual wheelchair for the rest of the day. Since it was still the weekend, we had to wait until Monday morning to take my power chair to the shop for repairs. I can manage sitting in my manual for short periods, but I have limited independence if I stay in it for a prolonged time. That afternoon I had no choice but to wait and hope for a quick and easy fix the next day.

Fortunately, the team from my service provider did replace the damaged wire without any issues, and I got back in my chair late Monday morning. That was a relief, but it wasn’t the only SMA-related problem I had on my plate. A week before this instance occurred, my seat cushion wore out, thus putting immense pressure on my bottom. Although I ordered a new cushion online, it took about a week to arrive. I managed, but during that interlude, I felt like I was sitting on a rock.

Then a few days later, one of my caregivers asked if she could switch shifts with someone because of a family emergency. I resolved this issue quickly and secured coverage, as I believe caregiving is about mutual support. She texted me how grateful she was and that my flexible nature helped make this job a dream for her.

That one message made a rather chaotic week worth it. It reminded me of my strengths, no matter how many problems stand in my way. Living with SMA my whole life has made me more adaptable and capable of handling stressful situations. I may not always succeed, but I like to maintain a humorous outlook whenever possible.

Yet if I have to deal with a sore butt again anytime soon, I’ll embrace my inner Grinch this season.

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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