Staying on Top of Everything, or Just Getting By

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by Kevin Schaefer |

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One of my favorite films is “Rushmore,” a coming-of-age comedy from one of cinema’s most imaginative directors, Wes Anderson.

“Rushmore” tells the story of quirky teenager Max Fischer, an ambitious playwright who prioritizes everything but his academics. He joins every club available at his preparatory school, becomes smitten with an elementary teacher, and engages in a bitter rivalry with a disillusioned businessman played by Bill Murray.

Like many other Anderson films, “Rushmore” centers on a deeply flawed protagonist who remains confined to an awkward stage of adolescence. Watching Max fumble through multiple scenes is endearing and comical, particularly when he plays opposite Murray’s character. It isn’t until the end of the film that Max finally matures, relinquishing both his childish feud with Murray and his outlandish crush on an older woman. 

While I like to think that I’m not as immature or ignorant as Max, I do relate to the sheer absurdity and eccentric nature of his adventures. Just as Max juggles debate team, fencing, beekeeping, French club, track and field, and a dozen other commitments, managing SMA is like keeping up with a never-ending list of extracurriculars. 

I wrote about my chair malfunctioning and my caregiver’s car catching on fire in recent weeks. No other incidents of that caliber to report lately, but even the more mundane days take their toll on me. Something as seemingly minuscule as a stomachache or physical discomfort can leave me feeling drained. 

Since starting aquatic therapy in 2015 and Spinraza (nusinersen) in 2017, my energy levels have improved significantly. I’m able to work full time and maintain a healthy social life, and I haven’t been hospitalized with a major illness since February 2018. Yet, even with treatments and physical gains, I’m still not immune to fatigue. Fatigue can hit me with or without warning, and it doesn’t care whether or not I’m trying to make it through another workday. 

My friend and colleague Bailey, a columnist for Cystic Fibrosis News Today, referenced a conversation we had in one of her recent columns. Since developing issues with hand agility, which is something I’m acutely familiar with, she asked me over text how I manage. “How do you handle it?” she asked me. 

I was flattered to receive a shoutout from Bailey, especially because she has a massive social media following and made me feel a bit like a celebrity. Her comments about how I “move more in a day than most of us do in a lifetime” and how she wants to be more like me, in terms of resilience, were touching. As someone who admires her work and advocacy, I greatly appreciated her compliments. 

However, the reality is that I’m no more resilient than any other person I know in rare disease communities. There are plenty of days when I’m beaten, drained, and exhausted. I’ve had plenty of moments of anger and frustration over being unable to turn a page of a book or move my hand across my tray. Some days, I really want to just stay in bed and not have to deal with caregiving, fatigue, or catheter leaks. I love my body and my identity as a disabled person, but that doesn’t mean that my dysfunctional muscle-brain-communication system doesn’t wear me out. 

SMA affects people in different ways, but all of us in this community know that it can impact us mentally and emotionally as much as it does physically. No matter how resilient or adaptable we are, we’re still susceptible to bad days and burnout. I know I am. 

In my life, there are days when I feel like Iron Man, and other days when I feel like Max Fischer, bumbling my way through life and taking on way more than I can handle. That’s life with SMA, a constant balance between order and chaos, success and comical failure. 

Still, I’ll take the super-SMAer compliments any day.

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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.

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