Columns
Songbirds reward the stillness that SMA requires
One of my favorite things about springtime is the return of the local bird life, especially the songbirds. While certain species stay through the winter, the warmer weather brings forth a flurry of feathers as both year-round residents…
Finally, Singaporeans like me can access the SMA treatment Evrysdi
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…
My life with SMA is filled with sitcom scenarios
The best sitcoms capture the chaos and unpredictability of everyday life. In the new Apple TV+ series “The Studio,” co-creator and star Seth Rogen plays Matt Remick, a disgruntled movie executive who lands his dream job…
In my dream world, there are no barriers
When I close my eyes, I see the world as it should be — a place where accommodation isn’t something to fight for; where people with disabilities don’t have to plan every step, hoping the next doorway isn’t too…
Discovering what I love about my new home within a home
Now that I’ve been living in my new house for a month, I better understand what I love about it. In my last house, where we’d lived since I was 13, I had my own…
How am I coping with chronic pain? Let’s see …
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…
Amid the chaos, spring’s transformation brings hope
My husband, Randy, and I had our first baby while I was teaching students with a variety of difficult diagnoses. Our son, Matthew, was followed three summers later by our daughter, Katie. During both pregnancies, I never worried that they…
How a stuffed horse brought back a heavy childhood memory
Every now and then, memories from my childhood hit me in the most unexpected ways, which is surprising because I don’t remember much from years past. Alas, my parents were cleaning out our basement recently when they…
I look forward to creating many special memories in my new home
Memories are like windows that look inward. Living with spinal muscular atrophy (SMA) certainly adds a special framework to that window, allowing light to pour in on all the unique experiences I wouldn’t…