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…
Wandering the Lines – a Column by Sherry Toh
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…
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…
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.
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,…
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…
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…
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…
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…
Recent Posts
- High-dose Spinraza safely boosts motor function in SMA children: Data
- My home health nursing shortage was suddenly resolved
- Man with SMA type 4 shows rare fake muscle enlargement in calf: Report
- When friends become disability advocates
- Women with SMA can have successful pregnancies with team-based care
