Guest Voice: My one job for cold and flu season is to not get sick
I recently spent several weeks fighting a respiratory illness
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Since we’re now well into cold and flu season, there’s one subject that will be at the forefront of my mind for several months: to do everything in my power to not get sick.
I think everyone with spinal muscular atrophy (SMA) can relate to the unmitigated fear associated with that strange tickle in the back of the throat — one that tells you it’s time to brace yourself and batten down the hatches, as if a disastrous storm is on the horizon. Getting any sort of illness is a lot like enduring a horrific storm. And however mild that illness might be for an able-bodied person, it is never that simple for someone living with SMA.
I recently spent several weeks fighting a respiratory illness, so the torment of it is still fresh in my mind. It’s not something I’m eager to repeat soon.
Before last winter, I hadn’t been sick in four years because of the protocols my mom and I put into place when I was little to preserve my fragile lungs.
Taking all the precautions
To illustrate more fully, it’s necessary to go back to the beginning, to my origin story.
From kindergarten to completing my master’s degree last year, most of my schooling was done remotely. The main reason for this was that I was hospitalized several times with some nasty respiratory infections after being around my peers during cold and flu season. The decision for me to do schooling at home was made by my parents, and it probably saved my life.
For the first 19 years of my life, each new severe illness took some of my strength along with it. It was how I first lost the ability to eat, that is, to swallow effectively, after being put on a ventilator for nine days before I was 2 years old. As I got older, the ensuing weakness that would occur after an illness would primarily affect my arms and hands.
Thankfully, severe illnesses became less frequent as I got older because I better understood the danger of getting sick. And it helped that I adamantly wore a mask in public long before the COVID-19 pandemic made it cool. I also learned to zoom away if I happened to be in the vicinity of someone coughing or sneezing, often leaving a faint trail of one of my favorite scents, Eau de Purell, in my wake.
My mom has long joked about putting me in bubble wrap to further protect me. We actually took it to that level during the height of COVID-19: I’d wear a rain poncho when it was time for my Spinraza (nusinersen) injection. I can’t properly shower for a few days after a procedure, so it was better to be safe than sorry and cover everything that could harbor germs as much as I could.
The COVID-19 pandemic changed a lot more than just me wearing a plastic poncho in public. It also made me even more afraid of germs, if that was humanly possible. I rarely go into public indoor places, and as a result, I see fewer people. Admittedly, I become more of a recluse during the winter months.
I still wear the plastic ponchos every time I enter a hospital, along with a mask, and yes, I do sometimes feel self-conscious. I would love not to do the mental math about the risk of exposure to any respiratory illness when I go inside, but the risk would be too great.
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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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