Defying Monotony in Life With SMA

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by Kevin Schaefer |

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“Hello, Peter. What’s happening? Umm, I’m gonna need you to go ahead and come in tomorrow. So, if you could be here around 9 that would be great. Mmkay? Oh, oh, and I almost forgot, ahh, I’m also gonna need you to go ahead and come in on Sunday, too, ‘kay?”

Gary Cole’s dry, deadpan delivery in the cult classic “Office Space” is as iconic today as it was in 1999. Cole plays the smug and soulless manager Bill Lumbergh, who ranks among Darth Vader and Vito Corleone as one of the best movie villains of all time. He may not do physical harm to anyone, but he sucks the life out of his employees with his micromanaging style and his relentless demands.

Although “Office Space” is primarily a satire about the pitfalls of corporate culture and toxic workplaces, it’s also the story of its protagonist breaking free from the chains of monotony. Ron Livingston plays Peter Gibbons, an employee who works under Lumbergh as another cog in the machine, and a man confronting a severe existential crisis. He tells a hypnotherapist that every day of his adult life is equally miserable, and it isn’t until he breaks all the rules that he begins a journey toward fulfillment.

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Now, let me start by saying that I’m not suggesting that everyone reading this should quit their jobs and start an anarchic revolution against institutions everywhere. It’s no doubt a poetic idea, but I think there’s another lesson to take from Peter’s story.

For Peter, things start to change when he decides not to settle for a complacent, monotonous lifestyle. He makes plenty of mistakes along the way and narrowly avoids life in prison for embezzlement. However, he eventually lands a job that brings him satisfaction and learns to embrace life.

Living with SMA brings with it an inevitable degree of monotony. Even with a fulfilling life, there’s still the inescapable plethora of insurance hurdles, treatments, medical appointments, caregiver schedules, and daily doses of fatigue. It’s easy to feel trapped in a whirlwind of obstacles and to settle for survival. Some days, survival is a major accomplishment.

To counteract this notion, I give myself things to look forward to. Some things are more spontaneous, like last week, when I asked my caregiver if he and his girlfriend wanted to see a movie with me during one of his shifts. He works weeknights with me and fortunately shares many of my tastes in all things nerdy. I had been getting cabin fever from the past couple of months of winter isolation, and I was eager to see a new anime film that recently came to theaters. This outing provided me with a nice respite from general life stress, and I felt more energized the following day.

Then there are the bigger occasions that are planned months in advance. Right now, it’s the Cure SMA conference in California this summer. Because the pandemic has interrupted just about everything over the past two years, the last in-person conference was in 2019. My parents and I flew for that trip, which resulted in a disastrous scenario. This time, we’re embarking on an epic cross-country road trip and will be away from home for most of June.

Even without the hassles of securing a power wheelchair on an airplane, there are still a million things that could go wrong on a road trip. I’ve documented some examples from my own experiences in previous columns. Nonetheless, it’s the prospect of adventure that excites me. Stepping outside one’s comfort zone is simultaneously terrifying and liberating.

Monotony is sometimes unavoidable, but that doesn’t mean we have to be addicted to it. Things as simple as a FaceTime call with a friend or reading a good book can help break the cycle of routine in our lives and bring more fulfillment. Just don’t be exactly like Peter Gibbons and destroy company property while concocting a revenge plan that’s based on the plot of “Superman III.”

Ah, great movie.

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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