My first Evrysdi-versary passed without incident. Ironic, considering how much time and effort I put into acquiring the medication. A disease-modifying treatment (DMT) for SMA is no small thing. Spinraza (nusinersen) took the community by storm, with patients around the world petitioning their insurance companies. I wasn’t immune to the…
Columns
Spring is a magical time of awakenings, a flagship season of gentle nudges and reminders from the natural world outside my window. Lately, I’ve felt like a honeybee, and I happened to be visited by one in the midst of enjoying springtime vibes the other day. Suddenly noticing the…
Editor’s note: This column discusses suicide. Please find resources for help at the end of the column. I wish the call had been an April Fools’ prank. As readers of my column will know, I’ve been very vocal about the need for SMA patients here in Singapore to access…
Last Sunday, my dad took me by surprise. “I don’t have anything planned for today,” he said as he helped me get out of bed. “Let’s do something fun.” I assumed he meant something simple, like getting ice cream or dropping by the grocery store for a bouquet of flowers.
Today, I thought about the question, “How can I become a better advocate?” For the first time, I realized that I’d taken part in advocacy activities even when I didn’t know it. This is how it happened. I like to buy and download turn-based PC games. In these, I…
As my parents’ first child, I checked off the typical firstborn squares. I was conscientious, reliable, structured, cautious, and an achiever — in short, a perfectionist. My teachers knew I was responsible and that my folks expected me to do my best. I had no desire to disappoint. That…
I was about to wrap up my freshman year of college when I found myself absorbed in a whirlwind of emotions. Tubes surrounded me as I sat in my room attached to my Vest Airway Clearance System, a device I’d been using since my sophomore year of high school.
When it comes to new wheelchairs, I’ve been known to drag my feet. My parents love to tell the story of how my last chair sat in our basement library for a year after I got it. In my defense, I was in the midst of a major depressive episode…
It’s been about two years since I got a message from a friend saying that she would miss seeing me at Turnstone, the local disability center. Earlier that day, an announcement had been made that the building would be closing for an undetermined amount of time due to the COVID-19…
Back in 2019, I signed up for an online women’s health and rights course by women’s rights activist and Stanford teacher Anne Firth Murray. It was a spur-of-the-moment decision; I’m not even sure I was truly interested in it back then. While I considered myself a feminist, I was wary…
