How SMA Has Affected My Perspective on Aging

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by Kevin Schaefer |

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“Your 60s you’ll have a major surgery, the music is still loud but it doesn’t matter because you can’t hear it anyway. Seventies, you and the wife retire to Fort Lauderdale, you start eating dinner at 2 o’clock in the afternoon, you have lunch around 10, breakfast the night before.”

Billy Crystal’s character Mitch utters this monologue about aging in the 1991 comedy “City Slickers.” As he faces the hurdles of a midlife crisis and the woes of mundanity, he views everything with a cynical lens. It takes an unlikely Southwestern adventure with his best friends and some cattle riding for him to rediscover his purpose and live life to the fullest.

It isn’t uncommon for people to view getting older in a negative context. Countless other movies, such as “This Is 40,” also examine characters who become victims of mediocrity once they reach a certain age.

Many people age only to long for the glory days of the past. Getting old often comes with physical decline, fatigue, financial difficulties, and graduating from seeing one doctor to a full team of specialists. Compared with the carefree spirit of youth, it’s easy to think that getting old sucks.

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I recently turned 29, which I recognize is still a relatively young age. However, in disability years, I share many commonalities with senior citizens. Looking at my getting-old list, I am quite accustomed to physical decline, severe fatigue, and insurance hassles. I could also assemble a small hockey team with the number of medical specialists I see. Sometimes I think the only difference between me and an 80-year-old is that I can rattle off song lyrics from Taylor Swift’s new album.

Living with SMA offers a unique perspective on aging. Sure, there are times when I wish I was a little younger and my disability hadn’t progressed as much as it has now. It seems foreign to me these days, but there was a time when I could raise my arms in the air and sit on the floor unassisted. Now that I struggle to maneuver my hands to reach my phone and joystick, it’s easy to long for those “glory days.”

And yet, aging for people like me means defying expectations and meeting milestones. Like most SMAers, I received a shortened life expectancy and a lack of enthusiasm that I would accomplish anything significant. The doom-and-gloom diagnosis is a common origin story for people in my community. And many of us have lost friends and loved ones. As such, we’re more apt to celebrate each year that passes.

Still, this doesn’t mean that we are angelic Tiny Tim caricatures who exist to inspire everyone else on the planet. Disabled people are people with human emotions, complexities, strengths, and weaknesses. I can have an enhanced appreciation for life and still moan and complain when my Postmates order is wrong because of a missing sandwich condiment.

For my birthday this year, I ate good food, spent time with friends and family, watched movies, and celebrated the fact that I made it out of the hospital recently.

As I begin the final year of my 20s with a lifetime of experience as a disabled person, I try to implement a human approach to aging. I look at my past with both fondness and regrets, but not enough to deter me. I look at my present with gratitude and goals for how I might grow. And I look to my future with hope, knowing there will be ups and downs along the way.

Now that I’ve finished my philosophical quota for the day, it’s time I continue listening to the aforementioned album and hear from the voice of my generation. Meet me there at midnight.

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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