What Will Become of Me Once I’m 23?

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by Sherry Toh |

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time of trouble | SMA News Today | Disability Pride Month | main graphic for column titled "Wandering the Lines," by Sherry Toh

“Lord, what will become of me/ Once I’ve lost my novelty?” was the original lyric sung in Taylor Swift’s “Nothing New,” a bonus track she included with her recent remaster of her 2012 album, “Red.” Yet, for some reason I heard her sing, “Lord, what will become of me/ Once I’m 23?” Thus, I had the title for this column. 

I might have misheard Swift because my 23rd birthday was approaching on Dec. 16. By the time this column is published, I will be 23 and dealing with all the anxieties and expectations that come with that age, plus the added complication of SMA. 

It’s tough enough figuring out your identity and aspirations in your early 20s, but SMA adds another dimension to the struggle. Time works differently for SMA patients. Our brains may tell us we’re young and have decades ahead of us, but the weakening of our bodies reminds us we could breathe our last breath tomorrow. Plus, in my case, my doctors warned that my inability to have my kyphoscoliosis corrected could mean I’ll reach my 30s or 40s, at most. 

I’m already experiencing chronic neuropathy due to my spine. It’s only a matter of time before my lungs are too compressed by its curve. 

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At the same time, people may treat us differently and have different expectations for us, based on their perception of us and our disabilities. For instance, we may face the same condescension as many other 20-somethings in the workplace, converse with an unintentionally ableist stranger who thinks we’re 12 years old on the way home, then arrive home to parents who may treat us like an adult or a child. 

Adult or not, we’ll always be our parents’ baby. There’s no escaping that — and maybe I should be grateful for it.

It’s a strange thought to entertain, especially for someone who gripes about the infantilization of disabled people. But as someone who was often called “mature for her age” as a child, I confess I’ll miss feeling wiser than I am when I receive that compliment. Friends online sometimes assumed I was in my 20s when I was a teen. Family used to praise my surprising knowledge of things. 

How long until I’m no longer an exception who’s “mature for my age”? How long until I’m just another average adult? How long until I’m considered an immature waste who’s falling behind my peers, having missed the ages where success in a career or romantic relationship is expected?

If SMA and my spine don’t hurt me further when I’m older, those fears coming true will.

‘Tick, tick’ goes the clock

I’m trying to find comfort in knowing I’m not the only one who’s afraid of time. Though Swift’s song “Nothing New” is primarily about the sexism she faced in the music industry at 22, it’s also about the fears I’ve described above. The second verse cuts especially deep, sung by her collaborator on the track, Phoebe Bridgers:

“How long will it be cute, all this crying in my room?/ When you can’t blame it on my youth/ And roll your eyes with affection.”

Then there’s playwright Jonathan Larson, whose semi-autobiographical musical “Tick, Tick… BOOM!” was recently adapted into a musical for Netflix, directed by Broadway’s Lin-Manuel Miranda and starring Andrew Garfield as Larson himself. 

My fellow columnist Kevin Schaefer has a brilliant column on “Tick, Tick… BOOM!” In it, he describes how he relates to Larson. I recommend it to readers wanting more insight on how SMA patients confront grief, loss, and taking one step forward at a time. 

The film and Kevin’s column made me more aware of time than I already was. At 29, surrounded by friends dying of AIDS, and heroes and peers reaching success in their 20s, Larson believed he was too old to be successful. The first iteration of “Tick, Tick… BOOM!,” a rock monologue called “Boho Days,” was based on his struggle and the lessons he learned the days before and after his 30th birthday. At 35, the night before the off-Broadway previews for his Pulitzer-winning musical “Rent,” he passed away. 

Larson never experienced the success he wanted — unlike his hero, composer Stephen Sondheim, who passed recently at 91, or Swift, who turned 32 on Dec. 13 and is an international icon. But they share one commonality: catalogs of music encouraging audiences to live full lives despite our fears.

Still, it might be a while before I stop humming this line from “30/90,” the first song from “Tick, Tick… BOOM!”:

“They’re singing, ‘Happy birthday!’/ You just want to lay down and cry.” 

Hopefully I’ll feel better about turning 24 next year.


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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