Upon diagnosis, caregivers and SMA patients are often warned to watch the patient’s respiratory system. The weakening of this most basic function of the human body is the most common cause of death for people like myself. Hence, regular pulmonary exams are done, physiotherapists are called in to teach…
Wandering the Lines — Sherry Toh
Sherry “Elisa” Toh (she/they) is a journalist who lives in sunny Singapore. Her diagnosis of SMA type II was in 1999 at 13 months old. Kyphoscoliosis and chronic neuropathy later developed as complications. As a hopeless romantic, her loves include fairy tales, tea, and gaming — the last being the primary focus of her work. She has bylines in PCGamesN, NME, and more. In 2023, her essay “Virtual Progress: A Disabled Journalist’s Thoughts on the Video Games Industry” was published in Singapore’s first printed disability studies anthology, “Not Without Us: Perspective on Disabilities and Inclusion in Singapore.” She writes in hopes of offering community and catharsis. Find her @sherlisass on social media.
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The magic of theater is that it’s live. Despite having a script, cues, rehearsals, and anything else the cast and crew can use to achieve consistency, the live nature of theater means the production remains mutable. You can’t “lock in” scenes like you can with film. Plus, not only will…
“Dear God, why did you not bless me with resting bitch face?” That was my prayer on May 23, 2025. I’d been up since 8 a.m. It was past 5 p.m., and I was exhausted from a pain management nerve ablation done that day. I was on my way home…
“There’s no such thing as a free lunch,” I used to hear my parents say. “Even if it’s free for you, someone else is paying for it.” From the moment I could comprehend the value of a single cent, my parents began drilling financial advice into my head. They wanted…
Spoiler alert: This column discusses the plot of the 2024 film “The Substance.” Hollywood was abuzz about Coralie Fargeat’s 2024 film “The Substance” when it arrived on the scene. It was a controversial contender for attention and awards. People seemed to either love it or hate it; audience…
Did you know dogs can be diagnosed with SMA? I did. As a child, I used to stare up at a news clipping of research about the condition in canines, which was pinned to the wall in the office of the Muscular Dystrophy Association (Singapore) (MDAS). My…
At the time I applied to be a columnist for SMA News Today, I knew just one piece of career advice: what you do in your personal life matters — especially if you’re a volunteer for anything. I was 19 when I received that advice. I had no formal…
Note: This column describes the author’s own experiences with Evrysdi (risdiplam). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I hadn’t meant to fall asleep. “I’m going to close my eyes for just a few seconds,” I told myself.
Last in a series. Read parts one and two. I bought shoes I wasn’t sure I’d wear. That seems like a trivial statement, I know. Except the shoes cost 119 SGD ($89) including shipping, and I hadn’t had any income for six months at the time of purchase.
Second in a series. Read part one. My mum likes to say that my home-care nurse is like a second mother to me, and I’d have to agree. Ever since my SMA care was transferred from a pediatric to a general hospital after I turned 18, my home-care…
First in a series. “All right, I have to go. Bye, Sherry,” my then-new pain specialist said. “I hope I won’t see you for a few months.” That was a few days after he’d administered a caudal epidural nerve block for my chronic neuropathic pain, almost a month after…
I’ll confess: When I wished for a spinal fusion in my teens, it was for cosmetic reasons. This was before kyphoscoliosis — an abnormal curvature of the spine both sideways and forward — had caused me severe pain and numbness that spread throughout my body. I hated…
I’ve never understood why some people are weird about wheelchairs. Why the pity? Why think needing to use one is one of the worst things someone could face? I blame my first power wheelchair for my inability to understand. I got it when I was about 9 from Make-A-Wish.
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