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.
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.
“Let me go, Mum,” I begged. It was Day 2 of a harrowing hospital stay. My chest had been hurting and feeling tight, nonstop. I couldn’t sleep. I couldn’t eat. I was tachycardic, with a heart rate in the 120s to the 140s. I needed a urinary catheter. I…
My introduction to a branching dialogue system in a role-playing game happened in 2019, the first time I played Dragon Age: Inquisition. The character I’d just created was a prisoner suspected of decimating a holy site in the fictional world of Thedas. As such, she was being interrogated.
“You and our baby brother should count yourselves lucky,” I told my brother Gabriel after my first appointment with a psychologist for attention-deficit/hyperactivity disorder (ADHD). “If I have ADHD, it means I have two disabilities and lost the genetic lottery twice, yet you guys are fine.” Gabriel laughed…
If you had a chance to fictionalize your life in a children’s book, how would you do it? Would you make the protagonist yourself, or would it be a loved one while you are relegated to a secondary role? Would you depict an ideal version of yourself, a character with…
Get regular updates to your inbox.
