My life with SMA is filled with sitcom scenarios
Underneath the chaos of a comic premise lies occasional frustration, however
The best sitcoms capture the chaos and unpredictability of everyday life. In the new Apple TV+ series “The Studio,” co-creator and star Seth Rogen plays Matt Remick, a disgruntled movie executive who lands his dream job when he becomes the head of the fictional Continental Studios.
Yet while he dreams of using his role to make original, prestige films and work with auteur directors, his aspirations are quickly thwarted when his supervisor tasks him with making a profitable franchise based on the drink Kool-Aid.
Tensions further escalate when his idol Martin Scorsese eagerly pitches him an original project that Remick would much rather make. Within days of getting the promotion, Remick is caught in the crossfire of trying to establish a good reputation with filmmakers and adhering to the corporate interests of the men in suits who pay his salary. It doesn’t take long for this character to sabotage relationships and frantically attempt to keep his company afloat.
My life with SMA is filled with an endless stream of such sitcom scenarios. There are the ER visits and travel hassles, but even something as simple as a weekly lunch with my mom and grandparents can result in disaster.
Falling flat at lunchtime
Just as my mom and I arrived at the restaurant for our regular Thursday meetup, she received a call from my nephew’s preschool that he was sick. She then rushed to pick him up while I stayed at lunch with my grandparents. Five minutes later, my mom called my grandmother to tell her that she’d pulled over because our van had a flat tire.
In the words of “Anchorman” Ron Burgundy, “Boy, that escalated quickly.”
Thankfully, I wasn’t in the car when the tire went flat. My grandmother left the restaurant to help my mom and pick up my nephew while my grandfather and I stayed there. We ate and waited while my mom called AAA to replace the flat tire with a spare. It could’ve been worse, but it’s no less frustrating when the nuances of SMA culminate with the curveballs of daily life.
The hardest part for me in these situations is that I’m limited in how much I can help. SMA affects every facet of my physical capabilities. I can’t drive a car, or even ride in one that isn’t accessible. A flat tire is no one’s fault, and it happens to people all the time, but having SMA adds extra steps and obstacles to something like getting transportation. Everything worked out and we made it home safely, but often I wish that chaos came with a pause button.
I remind myself regularly that circumstances exist outside the realm of human control, particularly in the world of disability. We like to think that we can fix and manage everything, as if we’re top executives and the components of our lives are parts of an imagined corporation. If I’ve learned anything from living with SMA, it’s that the only thing I can do is my best and adapt when unforeseen challenges arise.
Stay tuned next month for another exciting episode of “I’m not making this up!”
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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