‘Don’t Quit Before the Miracle Happens’

“I’m doing good, I’m on some new s**t/ Been saying ‘yes’ instead of ‘no.’”

These lyrics opened Taylor Swift’s song “the 1” and her 2020 album “Folklore.” I thought them fitting to open my first column of the new year as well, since my last column in 2021 began with lyrics from her 2012 album “Red.” And, well, I have been doing good.

I’m usually not one for making New Year’s resolutions. SMA has a tendency to decide how my life goes, and it’s not fond of me failing to focus on my health. In 2017, I did have New Year’s resolutions, however, which included developing my skills in both digital and traditional art. But I wound up with chronic neuropathy in my scalp, thanks to kyphoscoliosis, a combination of two types of abnormal curvature of the spine.

I also had New Year’s resolutions last year, including reading more and studying for an English literature degree. Instead, my chronic neuropathy worsened and my mental health spiraled. I read 20 fewer books than I read in 2020, and today, I am nowhere close to beginning my journey toward a degree.

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Apart from those two years, I haven’t made any New Year’s resolutions because it’s a way to avoid disappointment. I’ve learned that if I’m disappointed once by a year, shame on the year; if I’m disappointed twice, shame on me. 

This year, I’m picking up the pieces of myself that have been broken by grief and trying to find some good in it all. After all, it is a time to be hopeful and set the tone for the rest of the year as best I can.

I am hopeful because I have some exciting topics planned for my column, other publications have accepted my pitches, and I have some short fiction writing in the works. Maybe I’ll even finish that poetry chapbook I’ve had in my drafts for a couple years.

Plus, the folks at BioWare, the studio behind my favorite video game series, “Dragon Age,” have promised to soon tell us more about the upcoming fourth entry of the series.

And my loved ones have cool things ahead, so I’m excited to support them like they’ve always supported me.

Taking things ‘one day at a time’

All of these good things ahead don’t mean I’m not wary or worried. My health could disrupt my plans. Disease-modifying therapies for SMA are still unavailable here in Singapore. One of my caregivers is leaving, and my family is looking for someone to fill her shoes. The COVID-19 pandemic remains a threat. Many other bad things could happen. 

To ease my mind, I’ve been repeating a line from Netflix’s “One Day at a Time”: “Don’t quit before the miracle happens.”

The line is from Schneider, the best friend and landlord of lead character Penelope, a Cuban American nurse and mother who lives with her two kids and her own mother. She also went back to school.

One episode of the show reveals that she has anxiety, and explores how people cope with it. During one anxiety attack, Schneider comforts Penelope by telling her that everything she is juggling will lead to great things.

Whenever I think about that episode, I think about how I almost quit being a columnist when I was at a low point last year. I think about what I would’ve missed if I had chosen to shut down completely. I tell myself to remember how far I’ve come and how far I have yet to go. I remind myself not to quit before the miracle happens.

This year, I’m gonna dance

Last year, after I was hired as a columnist, I made myself a writing playlist, something to have playing in the background while I worked. This year, I’m doing something a little different: I’ve made a playlist of 14 songs. Eleven of them represent wishes I’m making and the tone I’ll set for each remaining month. 

The first three, however, are Taylor Swift songs that represent what I’ve been feeling in December and January, from the grief and fear in “Nothing New” to the wistful wishes in “the 1,” to the resolve to cling to the good in my life in “Holy Ground.” In the latter, Swift sings: “Tonight, I’m gonna dance/ For all that we’ve been through/ But I don’t wanna dance/ If I’m not dancing with you.”

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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.