With SMA, I’ve had to learn the art of patience
I don’t always feel helpless, but when I do, there’s a bug in my vicinity.
My house has felt like bug central this summer, and I’ve strongly considered moving out. OK, the latter half of that sentence might be an exaggeration. However, given that spinal muscular atrophy (SMA) doesn’t allow me to fend for myself physically when a bug approaches, my disdain for these little creatures is justifiable.
Though most SMA research is at our fingertips these days, it mainly focuses on health — the breathing difficulties, the swallowing woes, and the muscle weakness and their effect on our bodies. Of course, staying vigilant about these problems is important when living with SMA. Nevertheless, nowhere in the research does it talk about the disease’s impact on the little inconveniences in life, which most nondisabled people take for granted.
The ability to scratch an itch, swipe hair off the face, or, in my most recent case, swat a bug are a few examples of everyday tasks that people with SMA may not be able to do themselves. When I get itchy, I have to patiently wait for someone to come and scratch the spot. If hair blows in my face, I deal with it until someone can help pull it back. Nearly every physical task in my day requires me to rely on others for help and wait until they offer it.
After 33 years, the art of patience isn’t lost on me. When a bug comes at me, however, all hell breaks loose.
The dragonfly affair
The other day, my dad accidentally let a massive dragonfly into the house. It flew in so swiftly that we eventually lost its path, and I begged my parents to find it. That creature was larger than any dragonfly I’d ever seen, and knowing my luck, it was waiting for me to go to sleep. Sure enough, my parents searched to no avail, but when I went to bed, I spotted it immediately at the top of my door molding.
I didn’t know if dragonflies were harmful, but it didn’t matter at that point. If it flew at me, I couldn’t swat it away. Ultimately, my dad accidentally squashed it while trying to save it. His intentions were pure, but his execution was poor.
The following day, I found a spider crawling on me while I was watching television on the couch. I swore it was the dragonfly in the afterlife, now seeking revenge. Panic ensued when my mother couldn’t get to me right away. I hated bugs more than ever at the moment. Even more so, I hated SMA for not giving me the strength to kill the bug myself. Alas, I patiently waited for someone to come and help me.
To me, patience isn’t just a virtue. It’s a life skill SMA taught me long ago. In doing so, I’ve learned to manage my expectations when it comes to asking for help, knowing I may not be able to receive it right away. I’ve learned that everyone has their own pace of doing things, and I must be willing to adapt to the circumstances. Most importantly, I’ve learned to accept that I’ll always need to rely on others for every physical need, even if that means swatting away a pesky little bug.
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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