Taylor Swift’s songs have prepared me to advocate and write on SMA

An ardent fan explains how this pop career has influenced her own

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by Sherry Toh |

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Regular readers of my column may know that I love Taylor Swift.

I’ve written multiple columns explaining how her songwriting has given me solace. I still buy physical copies of her albums (even though my laptop has no CD drive), and I’ve attended her concerts each time she’s visited my home island, Singapore. Recently, I swept my best friend, Brianna (Brie) Albers, into the deep ocean that is Swiftie fandom. In fact, I’d argue that I’ve dethroned my fellow SMA News Today columnist Alyssa Silva as Swift’s No. 1 fan.

Swift’s influence is threaded throughout the tapestry of my life — from my love of cat-eyeliner “sharp enough to kill a man” to my wish to believe that there’ll always be beautiful things and people in the world. But I’ve never talked about how she and her songs shaped me as a writer and SMA advocate.

So in honor of her Eras Tour, which began March 17 as a celebration of her 17-year recording career, I’ve decided to share the top three ways Swift has influenced my own career.

(For those who aren’t Swifties, the following subheadings are lyrics from her songs “You’re on Your Own, Kid,” “Eyes Open,” and “Dear Reader,” respectively. You can listen along with a Spotify playlist I made.)

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‘Something different bloomed/ Writing in my room’

From as young as 16, Swift has had a keen eye for detail. Across her discography, merchandise, and other media, she’s left secret messages for fans in the lyrics printed on her album booklets; planned music releases to fall on dates that add up to her lucky number, 13; and planted Easter eggs that reference literary works and happenings in her life. In doing so, she’s created a narrative of herself tied together with invisible strings.

I picked up on Swift’s dedication and skill, and it’s helped to improve my writing and planning. I keep spreadsheets of my column deadlines and ideas, doing my best to align them with significant dates. A good example, coincidentally, is the column I wrote on her rerecording of her album “Fearless,” which walked me through memories of growing up while living with SMA.

I write primarily for other girls with SMA and try to paint a cohesive narrative of my journey, much as Swift does, by using common themes, like the concepts of value and romance. For extra fun, I sprinkle Easter eggs, pop culture references, puns, and wordplay over my work, too.

‘Even when you’re sleeping/ Keep your eyes open’

When Swift rereleased her 2012 single “Eyes Open” to celebrate her Eras Tour, I told Brie it was like an anthem for people who grow up to be advocates.

In it, Swift describes the tricky part of winning battles with wooden swords and dreaming of happy endings as children, only to grow up and realize the world is cruel and keeps score — hence the need to keep our eyes open, as everybody is waiting for people in the limelight to break down.

Though the song was written for the “Hunger Games” soundtrack and may have been inspired by Swift’s stratospheric rise, it reminded me that I need to be careful and strategic as an advocate. Certainly, I’m now feeling the pressure of fundraising for a year’s worth of the disease-modifying treatment Evrysdi (risdiplam). I’m the first adult to do so in Singapore, and whatever happens may set off a domino effect for other SMA patients here.

Yet if I didn’t fundraise, I don’t know how else I’d point out that a lifesaving drug shouldn’t be $375,000 a year in Singapore dollars (a bit over $280,000 U.S.). Someone had to say we shouldn’t keep score when it comes to healthcare.

‘No one sees when you lose/ When you’re playing solitaire’

Lastly, Swift’s music and career taught me that everyone shows a different side of themselves to different people. On stage and on the page, singers and writers may be like mirror balls, with their stories reflecting ours back at us. But we’re all ultimately just complex, messy human beings. It’s easy to forget that you can’t know if someone is going through a tough time unless they show you — especially if their job requires them to perform in some way.

So we shouldn’t put people on pedestals, and we must extend grace whenever we or others inevitably make a mistake.

It’s crazy to think I’ve listened to Swift’s music since I first heard “Love Story” on the radio when we were 14 years younger. Throughout that time, I’ve witnessed her rise and her supposed 2016 fall, after Kim Kardashian released a segment of a phone call between Swift and Kanye West that made #TaylorSwiftIsOverParty trend on Twitter.

A full version of the call, however, corroborated Swift’s version of events, and with record-shattering albums, she’s long since bounced back and is doing better than ever. I’ve learned so much by growing with her, and I hope I can continue to do that for another decade or two at least.

Though there’s a 1 in 13 billion chance that the stars align and you’re reading this, Taylor: Thank you.

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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