Humor Gets Me Through the Bad SMA Days

My parents and I have been traveling to Iowa every weekend for the past few months. We recently bought a vacation home in Wisconsin, and we’ve been getting the farm that my mom inherited ready to sell. Other than painfully slow Wi-Fi and a less-than-comfortable bed (and a three-hour drive every couple of days), it’s not that big of a deal, but we’re definitely getting to that point of exhaustion where even the most annoying things somehow become hilarious.

I never used to bring all my medical equipment with me, not for short weekend trips, but with my sinus infection still going strong, it’s better to be safe than sorry. Which means that every few days we have to pack everything up: my BiPAP, nebulizer, cough assist, suction machine, wheelchair charger, and feeding pump charger. Thankfully, everything’s pretty small these days — we’re able to stuff everything into a single crate, as opposed to the three crates it was when I was younger. But it’s still a lot to pack, and it’s definitely a lot to remember.

We’ve gotten pretty good at making do when we inevitably end up forgetting something, but there are some things, like the suction machine, which make or break a trip. I’ll spare you the gory details, but it suffices to say we had to get pretty creative, especially with my sinus infection rearing its ugly head. It was one of those things where you just had to laugh. Of course, I wasn’t laughing much those first few days, not with my head throbbing and the world spinning. But eventually, not even my stuffed sinuses could keep me from acknowledging how ridiculous it was.

My dad and I have this saying: “Oh, this life.” When I’m overwhelmed by how stupidly comical something is, I say, “Oh, my life.” When my dad is struck by how utterly silly a situation is, he says, “Oh, your life.” And we laugh and shake our heads and move on to the next unbelievable thing.

That seemingly insignificant phrase has gotten us through over a decade of bad days. My life reads like a poorly-written sitcom sometimes. The things I’ve gone through — driving to the emergency room in the middle of the night because my service dog pulled out my feeding tube — would put shows like “Parks and Recreation” and “Brooklyn Nine-Nine” to shame. I like to think I manage to keep my wits about me most of the time, but when it gets to be too much, sometimes all I have to offer is a badly-delivered, “Oh, my life.”

I sat in the middle of our half-finished farmhouse, which is really more of a construction zone at this point, and thought to myself, “Oh, my life.” My mom struggled to untangle dozens of cords, while simultaneously balancing the makeshift contraption we threw together from defunct, years-old medical equipment. Plus, the power went out for the third time that morning and my Wi-Fi loaded nothing more than a blank white page. I could barely breathe, and I felt somewhat like Leslie Knope, surrounded by chaos in the eye of the hurricane.

I was a character in a sitcom. Jake Peralta, muttering cool, cool, cool under his breath so fast the words become a slur of consonants and vowels. The 99th precinct is on fire, everything is a mess, and still, we manage to laugh.

Sometimes humor is all we have.

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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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.