‘Why Do You Write Like You’re Running Out of Time?’

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by Sherry Toh |

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Of all the works of art in the world, the one masterpiece with an undue influence on my writing is the Broadway production of “Hamilton.” Maybe it’s a cliche for a writer and musical nerd in her 20s to say this, but when I listened to the “Hamilton” soundtrack for the first time, it was like rediscovering the English language — and my motivations to write.

I was on the verge of turning 19 at the time, which is Alexander Hamilton’s age at the beginning of the musical. The layers of wordplay throughout the musical astonished me. I had never considered the possibility of bending, twisting, and folding writing into something that offered a new perspective every time you looked at it.

Non-Stop” is my most-played track, the secret weapon to my productivity. On days when I feel paralyzed by doubt about my writing, or guilt at my failure to write even a hundred words while time creeps closer toward a deadline, I hit play on the track and hope my fingers will fly with the chords as the music builds. Sometimes, I silently mouth the questions Hamilton is asked by the chorus, like a prayer for help from his spirit.

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“Why do you write like you’re running out of time?” the chorus sings. “How do you write like you need it to survive?”

I returned to “Hamilton” and those questions some weeks ago, after an exchange with my mother. I’d just gotten out of the bathroom and she was sitting on her bed. While my caregiver helped me with my pants, Mum and I caught up for the day. I told her about some gaming articles I was commissioned to write.

Because she was aware I sometimes stayed up late or awoke in the middle of the night, my mum said, “Don’t stress yourself. Why do you work so hard? I don’t want you to worry about money. I have enough money to give you.”

“It’s not about the money,” I said. “It’s about getting my name out there; it’s about …”

“Being famous?” she asked.

“It’s about showing people that I’m useful,” I replied.

“Non-Stop” started playing in the back of my mind. I somehow felt like I understood Hamilton better in that moment. Like him, I’m desperate to rise to a place of security and dignity, afraid of grief and death, yet writing out of grief nevertheless. Except, my fear and grief are perhaps more tangible, given how far SMA has progressed inside my body.

I am reminded that I’m running out of time to live the moment. And although there is a disease-modifying therapy that could buy me time, I am, by fault of disability, disease progression, class, and lack of wealth, someone who is aware my words do not yet matter enough to secure my future and change the world for the better.

“If our politicians notice I have my name in well-known international publications,” I told my mum, “maybe they’ll see that paying for adults to have expensive rare disease treatments is worth it and isn’t a waste, because patients can continue contributing to society.”

“As long as you’re not stressing yourself out,” she replied.

I joked that I know I’ll end up in the hospital and have more medical bills if I don’t rest. Satisfied with that response, Mum let me bid her goodnight and go to my room.

As I opened the Google Docs app on my iPhone and began a new draft, I thought about how what I said to my mum contradicted arguments I’d made in my columns. I’ve argued that people should be valued beyond dollar signs, for their human rights-based perspectives, for the necessity of rest.

Yet I was working a little later than I should have, again, because I believed I needed to justify my existence to people in power. Singapore, where I live, fancies itself a meritocracy, after all. Never mind that merit is rarely enough to climb to the top, and you need resources and connections.

This is unfortunately how the world is, and how it’ll always be if we continue linking wealth and productivity to human worth. You can dream of a better world where everyone matters, and espouse your ideals, but unless you rank high enough, you cannot change the rules of the game that govern society.

So I play the game as presently intended, like Hamilton. I write because if I do not, I will not survive. I do what I can to climb to the top, in hopes that I’ll matter enough one day.

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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