As someone living with SMA, I rely on various machines and medical equipment to function and stay alive. While I’ve never been blind to this, I often take my situation for granted. Occasionally, however, an incident occurs that snaps me back to the reality of my fragility.
Last week, my wheelchair malfunctioned due to a joystick error. My limited hand strength means I need to use a highly sensitive joystick, and it wore out after 1 1/2 years of use.
I want to emphasize how essential my chair is to my life. My body doesn’t work, so my chair is my body. It might be obvious that I can’t move around the house or leave home without it, but being stationary is merely the tip of the iceberg. I can’t eat, drink, or for that matter, swallow at all. It’s nearly impossible for me to use my phone. I’m entirely out of action without my chair.
The good news is that this incident happened at home at the end of the day, and I have a terrific wheelchair mechanic, David, who has bailed me out of countless breakdowns over the years. If something does go awry, it’s usually only for a few hours. So, even though I was bedridden the next morning, I considered it to be a relatively minor incident.
Coincidentally, just moments after my chair broke down, my BiPAP machine stopped working. Thankfully, it took about five minutes to resume operation, but still, it was jarring to have two of my most crucial pieces of equipment fail within moments of each other.
Events like these force me to acknowledge the delicacy of my life. While these stories were of little consequence, that’s not always the case. I’m not overly worried about keeping my current equipment running for its life span. I’m more concerned about acquiring new gear when the time comes to replace it. I went through this during the process of getting my current chair, and it took months for my insurance to cover it. My previous chair barely made it to that point, as it was breaking down. It was a frightening ordeal.
The quantity of medical supplies that I receive has also diminished in recent years. For example, I used to get four canisters per month for my suction machine, and now I’m down to one per month. I’m managing for now, but it’s unsettling to think about how quickly things could go south. I don’t want to take anything for granted, but neither do I want to spend each day worrying about worst-case scenarios.
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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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