Here’s Your Sign to Invest in an Emergency Backup Generator

It was about a week and a half into the “Dad has COVID-19” saga. Mom and I were surviving in every sense of the term. We’re all introverts, and we all hate change. So you can imagine how very unhappy we all were. We were safe and our basic needs were met, but none of us was necessarily living the dream.

There was, admittedly, a light at the end of the tunnel. It was small, to be sure, and flickering like some sort of horror movie set prop, but it was light nonetheless.

Dad was improving slowly but surely. All we had to do was wait.

So we did. We waited and waited and waited some more. Mom and I binged “Gilmore Girls” and lamented that we couldn’t watch “The Lord of the Rings: The Rings of Power” as a family. It was the best of times, it was the worst of times … but mostly it was just middling.

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About a week and a half into this sad affair, our unextraordinary Minnesota suburb weathered a thunderstorm. This isn’t a particularly rare occurrence. I’ve written about it previously. But it was notable in that, when the power went out, Dad wasn’t able to come to the rescue.

If you have SMA, or any sort of complex condition, you know the importance of electricity. Rare disease patients rely on it for everything from lifesaving treatment to lifesaving distraction (e.g., “Gilmore Girls”). I’m lucky in that I can survive without it for short periods of time. But just because I can doesn’t mean I should.

I’ve used a BiPAP for as long as I can remember. It helps me sleep at night and keeps my lungs healthy. I’m not exaggerating when I say it’s one of several reasons why I haven’t been hospitalized with a respiratory illness since 2017. I can sleep without it, but only when I have to, and never without trepidation.

I hate when the power goes out, mostly because it’s a terrible way to wake up. One moment, I’m reliving my high school years, only to have the breath ripped from my lungs. My eyes fly open as I gasp and try to remember how to breathe unaided. Then there’s the BiPAP alarm — a tinny, screeching sound that persists even when you unplug the machine.

Normally, it’s not a big deal. My dad stumbles into my room with a flashlight and fumbles with the generator that lives under my bed. A few minutes later, my BiPAP stutters to life, along with every other electronic in my room. I take a deep breath of hydrated air and thank my lucky stars that Dad knows his way around an emergency generator.

But Dad is quarantined in the basement, and Mom has no idea how to make the thing under my bed purr contentedly. The writing is on the wall.

I have no choice but to sleep without my safety net.

I struggle to soothe my nervous system. The storm rages outside my window, complete with thunderclaps that rattle the windows. I wonder if this is how I die — electrocuted by a freak bolt of lightning.

I sleep fitfully. My lungs are heavy, like there’s a cat sitting on my chest, a cat with none of the cuteness of an actual feline. Logically, I know I can breathe on my own — I do it all day long! But there’s still the niggling fear that this is the night things change, this is the night my body forgets how to function.

Movement in the other room. I blink my eyes open, thinking about serial killers and the tragedy of dying in one’s own bed. Then my dad walks in, gloved and masked and notably without a knife (or whatever it is serial killers use these days; I know better than to indulge in true crime media).

“Hi,” I say, a little shyly, because it’s the first time we’ve spoken in days.

He mumbles something to the extent of, “Your mom asked me to turn on the generator,” to which I say thank you and God bless.

He settles on his hands and knees in front of the generator. I stare at the ceiling and count the seconds between me and sweet relief.

The first breath is priceless — and a reminder to maintain your backup generator for just such an emergency.

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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.