“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…
“So, how are you? What have you been up to?” I asked my friend Phoebe Chua back in November. It’d been a decade since we last saw each other. But we’d spontaneously reconnected and decided to go to a movie together. I wanted to know everything about her life…
If I owned a calendar, its December through April would be stained with tears. The square where Dec. 16, 2023, lands would have angry-looking ink blotches on it — to represent how I felt on my 25th birthday. My ex-girlfriend and I broke up on that day. I cursed her…
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…
Taylor Swift, the light of my life, the one artist who’s gotten me through all my toughest eras, once wrote: “So make the friendship bracelets/ Take the moment and taste it/ You’ve got no reason to be afraid.” I took that advice last month. Well, except for…
“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…
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