SMA Is Contributing to My Gender Crisis
I am giddy with excitement. Taylor Swift’s “Fearless” plays on my iPhone as I begin writing a column about that album and its effect on my life. I know exactly what I want to say, how its structure will…
Wandering the Lines – Sherry Toh
Sherry “Elisa” Toh (she/her) is a Singaporean native navigating life with SMA Type II and chronic neuropathy. She was diagnosed at 13 months by none other than Dr. Lee Wei Ling, after a referral from a GP. Sherry is a hopeless romantic whose loves include fairy tales, mythology, antiheroes, video games, and tea. She is planning on pursuing a BA in English Lit, but for now she’s enjoying freelance work and volunteering for communities and causes she believes in. She hopes her columns will offer community and catharsis to those who need it. Find her @musiquevers on social media.
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I Don’t Want a World Without SMA. Here’s Why
When I was diagnosed with SMA, my parents were confronted with a pivotal choice: stay in Singapore or move the three of us to the U.S., where they’d heard there might be an experimental gene therapy that could treat me. It’s a decision that would have altered the course of…
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My Coming-of-Age Has Come and Gone: Revisiting Taylor Swift’s ‘Fearless’
On April 9, I traveled back in time. I mean this metaphorically, of course. As much as I wish time travel were feasible in our world, it unfortunately remains the stuff of science fiction and fantasy. Thus, revisiting media I loved as a kid and looking…
The Siren Song of a Magic Cure
A woman lies in a hospital bed, her breathing erratic and her forehead damp with sweat. She’s shaking from the pain she’s in. In a matter of days, the loss of control and sensation in her legs has spread to her right hand and is now progressing to…
Why I Never Had a Spinal Fusion: A Retrospective, 10 Years Later
The first and last time I consulted an orthopedic surgeon, I was told I had a 50-50 chance of surviving a spinal fusion. “Her lung capacity is 24% at its highest,” the surgeon told my parents. Their faces fell. I could sense their apprehension.
Disabled Gremlins Unite: The Story of an SMA Friendship
Ever the dry self-deprecator, I send my Chinese New Year column to my dear friend Brianna with a message stating, “I sound like a gremlin here. Which is fine with me.” (Translation: “Yikes,…
What the Ancient Greeks and Architecture May Tell Us About Accessibility
The August 2020 issue of the archaeological journal Antiquity contained a fascinating look at ancient Greek architecture titled, “The architecture of access: ramps at ancient Greek healing sanctuaries.” It was written by Debby Sneed, a classicist at…
Mama, It’s Amazing What SMA Patients Can Do: A Reminder of Our Adaptability
My neurologist presses his stethoscope to my chest. He’s performing a routine checkup; it’s a mere formality, really, so I can be sent home with my prescription for gabapentin refilled. It’s over as soon as I breathe in and out and he has…
Learning to Cherish My Fortunes in the Year of the Ox
It is my yearly Chinese New Year tradition to complain about Chinese New Year. As with all honored traditions, this one goes back to my earliest memories of the holiday: My mum’s footsteps echoing throughout our house as she cooked breakfast before the sun rose. The…
How CDPR’s ‘Cyberpunk 2077’ Relates to Disability
The video game “Cyberpunk 2077” has become one of my go-to coping mechanisms. I know that’s an odd statement to hear from someone writing on a platform dedicated to disability advocacy, considering the backlash that video game developer CD Projekt Red has received due partly…
Welcome to ‘Wandering the Lines,’ Our Journey Into the Unknown
“I wish I were normal,” I used to say to my mum. I told her this at other kids’ birthday parties, when they played musical chairs or went on scavenger hunts. I said it during emergency hospital stays and in front of the TV, when…
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