If it’s all right with you, I’m going to use this week’s column to vent about something that happened over the weekend. To most, it was nothing that would have stood out. In fact, I’m pretty sure my cousins who were with me at the time weren’t even aware of what happened. But living with SMA has taught me to become hyper-aware of my surroundings — especially when it’s still cold and flu season — and I’ve found it to be both a blessing and a curse to live this way. Right now, however, I just feel cursed.
I was heading to a vegan bakery early Saturday evening, half expecting the place to be empty. After all, it was a Saturday night in a random town in Rhode Island. Unless you’re in the city or by the beach, nothing exciting happens after 5 p.m. around here. Feeling excited to try something new (and pretend like I actually eat healthily), my attitude quickly changed when I rolled through the door. The place was filled with wall-to-wall people. The smart decision would have been for me to leave, but I was starving and got in line anyway. Of course, as luck would have it, 30 seconds into waiting, the woman behind me coughed right on me.
I had never felt a bigger sense of dread, guilt, and anger toward myself. It’s one thing to get sick when it’s out of your control. But it’s another to get sick because of careless decisions you made just for a smoothie. Unfortunately, my stomach’s needs tend to override what my brain advises me to do, and this situation was no different.
I immediately gave my order to my cousins, got out of line, and tucked myself into a corner until they were done placing their orders. I looked over at the woman, praying her cough was caused by a little dust. Instead, I saw her bright red nose, which was indicative of the fact that her cough was most likely contagious. She was definitely sick.
Being hyper-aware of my surroundings means picking up on the smallest details of those around me. My cousins had no idea why I got out of line. They didn’t recognize the girl with the red nose. And they certainly didn’t see me inconspicuously panicking in the corner. However, growing up with a disease like SMA has ingrained these behaviors into me. I can hear someone sniffle from a mile away. My mother and I have Portuguese code words that we use when someone appears sick. And I never leave the house without hand sanitizer. Basically, I’m programmed to immediately do a quick scan of someone before I (or whomever I’m with) interact with them, and if all else fails, I bathe in Purell (kidding, sort of).
A few days have passed since my encounter with the red-nosed, congested woman, and I feel as though I’m in some sort of a waiting game. Will I get sick and beat myself up over making a poor decision for the next five years? Or will I make it out unscathed and beat myself up for the next five months for not being more careful? The jury is still out on that one.
March has always been the biggest struggle for me in terms of my hibernation, for it brings the first signs of spring. It tempts me to make my way out into the world again and coaxes me into thinking I successfully put another season of illness behind me. But just as I begin to flirt with my old routine again, those rude awakenings hit. The Centers for Disease Control and Prevention informs me the flu is still widespread. Memories from battling one of my worst illnesses to date in mid-April 2016 creep up on me. And, well, my experience over the past weekend tells me I’m still not ready to emerge fully from my hibernation. I’m still not out of the woods yet.
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.