My nonlinear life with SMA means I’m constantly evolving

Reflecting on how I've changed while navigating life's ups and downs

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by Kevin Schaefer |

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The 2014 film “Boyhood” caught the attention of audiences and critics upon its release for its wildly experimental approach. Writer-director Richard Linklater spent 12 years making the movie, following the main character, Mason, from elementary school until he went away to college. Linklater used the same actors throughout the production and filmed snippets of the story each year. His idea was to capture his characters’ lives in real time, showcasing big and small moments.

“Boyhood” became an instant touchstone in the world of indie cinema. Simply put, there was nothing else quite like it. When I saw the film in theaters, it felt like I was watching the lives of real people unfold. Rather than saturate the narrative with jaw-dropping moments and spectacle, Linklater focused instead on quiet and intimate scenes such as a single mom reading to her kids before bedtime. Another features their dad trying to connect with them during a car ride.

When I rewatched the movie a few weeks ago, I found myself connecting with it in different ways than I did almost a decade ago. In 2014, I was a college student, only a couple of years older than Mason in the final scene. At the time, I was contemplating my future as an adult with SMA, though I was very much wrestling with that part of my identity. My arm strength was declining rapidly, and with it, my independence was fading. I felt torn between reality and trying to enjoy as much of the traditional college experience as I could.

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Today, my life looks quite different. I’m a college graduate, an uncle to three kiddos with limitless energy, and I work in a field I never anticipated when I was younger. I take pride in my identity as a disabled person, noting how it’s helped me grow and build relationships with people from all walks of life. Having SMA allows me to connect with caregivers, community members, medical professionals, and everyday people who want to know if I designed the cool robotic arm on the side of my chair. Sometimes I answer yes.

Nonetheless, my confidence is not unshakable. I still face times of doubt and uncertainty. I still apologize for things that are outside of my control and when I have to ask for help. Some nights I struggle with survivor’s guilt as I think about the SMA friends I’ve lost. Confidence and struggle aren’t mutually exclusive.

A few weeks ago, I was at a doctor’s appointment to meet with a new primary physician. A nurse there noted that I had a calm presence and demeanor. I appreciated the compliment, but I thought to myself that this was not my permanent state of existence. I can be at peace and accept myself as I am, and I can also experience moments and prolonged periods of deep frustration.

Living with SMA is nonlinear. One day is great, and the next starts with my catheter malfunctioning and depleting my mental and emotional capabilities. In some ways, I’m similar to who I was in 2014, and in others, my persona and circumstances have changed. My attitude and mindset toward SMA are constantly evolving.

Maybe someday I’ll make a philosophical coming-of-age movie about my adolescence. If someone paid me to write a script filled with poop jokes and other bathroom stories, that would be something.

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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