Finding balance between excitement and routine in life with SMA

Both absurdity and mundanity are important to my well-being

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by Kevin Schaefer |

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In every popular sitcom, there’s always a central setting for the characters to congregate. For some it’s a workplace, such as the Dunder Mifflin branch in “The Office” or the government building in “Parks and Recreation.” Other shows feature a shared living space, such as the geek-decorated apartment in “The Big Bang Theory” or the comfy loft in “New Girl.” Each series has the characters go on idiosyncratic adventures, but the familiar settings provide viewers with comfort and consistency.

I enjoy the way sitcoms balance absurd scenarios with routine atmospheres and signature elements. No matter what kind of trouble or awkwardness Jess and her friends would get themselves into, they would always make it home at the end of each episode. Leonard and the gang could face crises in their personal lives and relationships, but they would still make it to the comic book store every Wednesday.

Life with SMA is similar to the beats of a sitcom. It’s a juxtaposition of adrenaline and mundaneness. There are days when I’m juggling caregiver schedules, insurance obstacles, medical appointments, and making time for work and friends. Other days I can rejoice in the lack of things on my calendar and take comfort in the mundane.

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Recognizing the need for rest

In college and throughout my early 20s, I jumped at every opportunity to socialize and be out in public. Since I was so often sick and hospitalized as a kid, I was eager to make up for lost time. I spent as much time as I could on campus, often overcommitted myself with extracurricular activities, and generally pushed myself past my limits.

Yet, the fear of missing out kept me from realizing the need for balance. I came to realize that even for extroverts like me, solitude and rest are essential. This is even more true for those of us with SMA. If we don’t allow ourselves to find comfort in the mundane and give ourselves time to rest, we become too exhausted to do anything else. Now that I’m about to enter a new decade, I suppose I’m a little wiser and a little more cognizant of the reality of fatigue and living with a neuromuscular disability.

During the recent Labor Day weekend, I spent a significant portion of it by myself. I had just hired a couple of new caregivers, was in the midst of dealing with an insurance hurdle, and felt the weight of pre-Spinraza (nusinersen) fatigue. As such, I stayed in on that Friday night to watch movies and decompress. Then I spent Saturday reading a Wil Wheaton memoir and working on a short story at my go-to Barnes & Noble location. I balanced it out with church on Sunday and lunch with friends on Labor Day.

Years ago, I would have deemed this type of weekend unfulfilling. Today, it’s exactly what I need to give my body the balance it requires. Some days and weeks are filled with the type of adventures I post about on social media, while others allow me to relish in the joy and simplicity of the mundane. Or maybe I’m just getting old.

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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