Striking a Balance in 2023 Between SMA, Well-being, and Productivity

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by Kevin Schaefer |

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A few years ago, I started listening to comedian Chris Gethard’s podcast, “Beautiful Stories From Anonymous People.” The premise of the show is that people call in, and whoever gets through talks with Gethard about any subject they want for an hour. The only condition is that callers can’t reveal their names.

I find this podcast fascinating because I never know what to expect each week. Some episodes are hilarious, such as the first one I ever listened to, in which an animation specialist revealed that his laugh sounded like a goose quacking. Others are deep conversations about childhood trauma, and some contain all the elements of a Hollywood romantic comedy. As someone who’s obsessed with the intricacies of human storytelling, I never miss an episode.

I’ve tried calling in a few times, yet I do wonder what I would focus on. Would I talk about my seven-year stint with a certain caregiver? Would I tell my coming-of-age story of being a disabled adolescent? Or perhaps I’d reflect on my life now and what I want to do with whatever time I have.

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Seeking balance

Now that I’m in the final year of my 20s, I have numerous ideas and illusions of how my story will play out from here. As an adult with SMA, one of the things I wrestle with the most is reconciling my ambitions and desire to push myself with tending to my health.

Currently, I’m on three different advisory boards: one for student media at my alma mater, one for a small theater company, and one for Cure SMA. I’m producing my first play while also working on other scripts. Then there’s managing caregivers and medical appointments, which is a job by itself. This is all in addition to my full-time job, a management position at this site’s parent company, BioNews.

I can practically hear the sound of my own body telling me to slow the (expletive) down.

Yet, my dilemma is common for many others in the SMA community and other disability communities. Just look at this conversation about productivity between two disabled allies. Between living on borrowed time and simply fighting to be seen and valued in society, we have a tendency to want to prove ourselves. Often this means pushing past our limits.

Despite what my current résumé might indicate, I have learned ways to slow down. I set Saturdays aside for rest, and other than writing, I try to minimize the amount of work I do on the weekends. I consider writing less as work and more as what I do for fulfillment and expression.

Still, my wrestling with productivity and rest isn’t fluid. I know I need to prioritize self-care, but I also feel like the final stretch of my 20s is equivalent to the closing act of a movie. Something climactic has to happen next. As a storyteller, a dreamer, and a Libra, I’m determined to reach for the stars. The play I wrote might be for a local community production, but that doesn’t stop me from fantasizing about getting a movie deal and hosting SNL.

Then there’s SMA telling me to pace myself and stop for intermission. Even with treatments and other medical advancements, I’m still not immune to fatigue and physical decline.

With a new year upon us, I’m reminding myself that balance is key to living with SMA. I’m excited to immerse myself in creativity and advocacy, travel, and living adventurously for as long as I’m here. And I’m eager to rest and take care of my well-being.

All that said, I think I’d have plenty to talk about on Gethard’s podcast.

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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