Tick, Tick … SMA Adulthood

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by Kevin Schaefer |

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In the new Netflix original movie, “Tick, Tick…Boom!,” Andrew Garfield plays the late playwright and composer Jonathan Larson, whose most famous work is the Broadway musical sensation “Rent.” The film is based on Larson’s autobiographical musical of the same name. It’s a story of an artist’s plight to achieve his dreams and manage his relationships and friendships as time slips away.

From the opening scene, “Tick, Tick…Boom!” conveys Larson’s desperation to beat the clock and become a professional composer before he turns 30. His best friend Michael has already given up on his aspirations of professional acting, and he’s seen other friends die in their 20s. The story takes place during the height of the AIDS epidemic. For Larson, getting the musical he’s been writing for eight years out into the world is an urgent matter. 

As I watched the movie, I saw parallels between Larson’s journey and my own. As a creator myself, I know the perils that come with artistic ambition. I’m constantly asking myself if I’m writing enough and pressuring myself to do more. I see friends publishing their own graphic novels, and I’m reminded that my only published comic is a short story in an anthology from 2018. 

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And as an adult with spinal muscular atrophy (SMA), the reality of friends dying young is one that’s all too familiar. The holidays can be an especially difficult time for SMA families and individuals, as the memories of lost loved ones fill the atmosphere. Just when you think that an era of treatments and medical advancements has pushed our community past the age of recurring tragedies, you hear about another friend gone too soon, or a mother losing her child before they reach a milestone birthday. 

All this to say that time is a tricky thing when you’re an adult with SMA. On the one hand, I’m well past my projected expiration date, and part of me strives to do as much as I can with the extra time I have. Yet, another voice compels me to find joy in simple, everyday things. Striking this balance between determination and contentment is often challenging. 

Recently, I found out about an SMA friend’s passing through his brother, who also has SMA. I reconnected with the brother a few years ago at a fundraiser event, and we’ve been texting since this unfortunate loss. As he struggles to fill the void of his brother and their relationship, I’m trying to offer support as best as I can. But even I find myself at a loss for words sometimes. 

Thinking about this, and the anniversary of my friend Carson’s passing, I’m reminded of how fleeting time is, how easily it can slip past us. People like me in rare disease spaces tend to think about death and uncertainty more than most people, not exactly by choice. And yet, as the world comes up on two years of a pandemic, we’ve all been confronted with the reality of how quickly things can change.

In real life, Jonathan Larson died the night before the off-Broadway premiere of “Rent,” at the age of 35. “Tick, Tick…Boom!” focuses a lot on the artist’s sense of urgency to achieve greatness, but it also showcases his journey toward contentment and relinquishing his obsession over the things he can’t control. 

As this year comes to a close, I don’t know what comes next. I plan on writing more stories that I want to get out into the world, but I don’t know when, and that’s OK. For now, I’m taking things one step and one moment at a time.

“We must be willing to let go of the life we planned so as to have the life that is waiting for us.”  — Joseph Campbell

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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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