Wandering the Lines – a Column by Sherry Toh

When you’re living with SMA, you quickly learn that you cannot function without someone else’s help. One of my earliest memories is of a nurse telling me that she’d asked doctors to remove my nasogastric tube for me. I must’ve been 3 at the time. My parents weren’t…

“Sherry, did you forget about your evening medication yesterday?” my caregiver asked as she held up a plastic bag with a vitamin pill and painkillers. It was Feb. 17, the day after I attended an Ed Sheeran concert with my brother Gabriel. In response, my faced looked like that…

One of the hardest aspects of the SMA journey is a loss of independence. If I reach back into the deepest depths of my memory, the first time I can recall this happening was when I started using straws as a child. My mum had noticed I was having…

I was apprehensive when I was wheeled into my neurologist’s clinic on Jan. 18. I had taken my last dose of Evrysdi (risdiplam), a life-changing oral treatment that can improve motor function in SMA patients, during the last week of September. That was four months ago. “Why…

I used to have this bracelet I loved. My dad bought it for me on a whim on my 16th birthday. We were walking through a high-end department store where he spotted a Swarovski counter. He immediately went up to the salesperson and said, “I want to find something for…

Secretly, I usually dread this time of year. To borrow from singer-songwriter Sara Bareilles, December is, to me, a “problem child.” It’s not easy to exist inside of this contradictory month, a time of both celebration and solemnity, of looking backward and forward. My birthday and…

In retrospect, my girlfriend must’ve been laughing at the ridiculous glee in my texts. “DISABILITY REPRESENTATION!” I practically shrieked at her, my fingers almost tripping over my keyboard. We were watching the first of the three 60th-anniversary “Doctor Who” specials together, though we live time zones apart.