I’m going to state the obvious: The list of things this disease prevents me from doing is a long one. So, when I have to rely on others, patience has become an imperative virtue.
If I need an itch scratched, I wait for someone to drop what they’re doing, and imagine just how satisfying it will feel when said itch gets scratched. If hair blows in my face, I hope that the wind will blow it back, but if not, I wait for someone to help. And if I see a bug crawling — actually, never mind. Any ounce of patience I have developed over my 27 years of living immediately flies out the window when any sort of insect invades my personal space.
I’ve always said that I rarely feel helpless because of SMA. However, on the rare occasion that I do, there’s a 75 percent chance it’s because there is a bug in my vicinity. When I spot one, and someone cannot get to me within half of a second, my thought process usually goes like this:
“OK, Alyssa. Try to lie as still as possible. Do not flinch. Do not make eye contact. Do not breathe. Wait, you should probably breathe before you create bigger issues. But, maybe if you don’t breathe, the bug will think you’re dead. Then, maybe it won’t bite you. HELLLLP!!!”
A poisonous spider bit me when I was young. There was a giant lump on my right knee, and I had to go on medication so its venom wouldn’t kill me. Although I don’t remember when the spider actually bit me, I’m going to make my best Freud-inspired, educated guess and say this is from where my fear of bugs stems.
Several years later, my brother and I were cruising down the highway when I saw a giant spider behind the front seat. It was spotted and furry, and its fangs were big enough to elevate my heart rate. We couldn’t pull over. I tried my best to hold my composure so as not to cause an accident, but I begged him to take the next exit. He said no, the spider jumped, and that was the last I saw of the creepy crawler.
Or so I thought.
The following morning, the spider was resting on my shoulder when my brother discovered it. He flicked that bad boy off of me without a mark, and it was gone.
Or so I thought. Again.
I was sitting in my college history class sometime after that incident, letting my mind drift off during the monotony of the professor’s lecture when I caught sight of something moving out of the corner of my eye. I looked down. Before me were tiny baby spiders crawling all around my wheelchair. It seemed the spider had set up house in my wheelchair overnight, deciding that a giant chunk of metal would be an excellent place to lay her eggs, and selfishly disregarding my fear for spiders and the inconvenience of when they would hatch. How dare she!
To date, that incident is probably one of my most vivid college memories. It is also just one of the many stories about spiders I have to share.
Don’t even get me started on bees.
All jokes aside, however, I think it’s important to share these stories because people often forget “the little things.” They see a bug; they squash it. Or, they swat it. They scream, and they jump, but they forget that they are fortunate enough to be able to defend themselves. They scratch their itch and pull their hair back, but they forget that others don’t have that luxury.
They forget the magnitude of what it feels like to always rely on others.
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.