What if I Could Take a Vacation From SMA?

Awkward conversations prompt a columnist to let a Beatle answer this question

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by Kevin Schaefer |

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All my troubles seemed so far away,

Now it looks as though they’re here to stay,

Oh, I believe in yesterday.

Among the countless hits by the Beatles, “Yesterday,” released in 1965, has stood the test of time as one of the most revered and influential songs in history. Over the years, it’s been covered by thousands of artists, as noted by Guinness World Records. It even inspired a 2019 romantic comedy film of the same name, in which a struggling musician finds himself in a world where the Beatles never existed.

Paul McCartney states that the song came to him in a dream and that he played its music on a piano the following day before writing the lyrics. Its subject is stuck in the past with thoughts of his ex-lover, and also thoughts of an unattainable future. Perhaps its melancholic tone is the reason for its popularity. It’s human nature to long for things that we can never have.

Throughout the years, multiple people have asked me some version of the question, “Do I imagine a day when I don’t have SMA?” Mostly these people have been strangers with an immense talent for delivering awkward conversation starters. If your instinct when meeting a wheelchair user is to ask them if they dream about walking, I’d love to hear the things you say on a first date.

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I enjoy poking fun at these scenarios, but the question itself is one worth pondering. Anyone who reads my column knows that SMA is a key part of my identity and I don’t view disability in a negative context. As a disabled person, I’m part of a beautiful community of people, many of whom I would never know if I didn’t live with my dysfunctional muscle-brain-communication system. I bring value to this world, and I’ll always advocate for the inclusion of disabled people in society.

However, there’s another layer to this question. Though I would not exchange my life for a different version, I do imagine what it’d be like to have a brief respite from SMA. But SMA isn’t something I can go to a White Lotus resort to get a vacation from. It’s stuck to my genes 24/7.

When my stomach rumbles in the middle of the night and I have to call my parents to rush me to the bathroom, I think, “A vacation from SMA would be nice right about now.” Or when my hands freeze in winter, making it impossible for me to drive my chair. And especially when I have to begrudgingly contact my insurance provider and wait for an hour to speak with a human being.

Can’t they at least play some decent background music while they put you on hold?

If I were to experience a brief, 24-hour SMA vacation, I wouldn’t run a marathon or climb Mount Everest. I would go to the bathroom by myself, shower by myself, dress independently, and go about my day without the slightest thought of having to rely on others. I’d walk to Barnes & Noble and freely read a book without having to worry about being unable to turn the pages. Maybe I’d buy a croissant and a hot chocolate from the cafe without having to instruct the barista on how to hand me my items and retrieve my debit card from the back of my phone.

Then I’d see a movie without having to coordinate a ride with someone. I’d eat in the theater, not worrying about the lights and sounds on my chair distracting other viewers. By evening, I’d see a friend before heading home. I’d write for as long as I wanted to, and I’d take my time getting to bed. I would spend the day without thinking about anyone’s schedule but my own.

And if I had more than 24 hours, I’d hop on a plane without fear of my chair breaking.

Do I need this fantasy vacation? No. I’m complete as I am, and SMA doesn’t make me any less of a human than someone without it. My real hope is to live in a world without ableism. Still, like McCartney, it doesn’t hurt to dream every once in a while.

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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