Over the years, I’ve grown more reliant on friends, especially those who live with some sort of disability. Of course, I treasure all my friendships, but there is a bond between disabled folks that transcends most relationships. It’s a special kind of knowing, a wordless understanding that is reassuring. I…
Columns
“The Truman Show” is one of those movies that I can watch over and over again without ever growing tired of it. I long ago lost count of how many times I’ve seen it, and it’s always been a family favorite. (My mom, who introduced me to…
If I had to choose the top three places I frequented prior to the pandemic, they would be the local coffee shop, Target, and Boston Children’s Hospital. Thankfully, I mostly frequented the hospital for appointments and procedures, not hospitalizations. Even so, I have spent a good percentage of my…
Over the years, I’ve thought, “I wish I didn’t have all of these responsibilities and could just have fun all of the time. Living with SMA provides enough pressure that I didn’t ask for!” Growing up, I would frequently hear, “Go study for those two tests you have at the…
When I was diagnosed with SMA, my parents were confronted with a pivotal choice: stay in Singapore or move the three of us to the U.S., where they’d heard there might be an experimental gene therapy that could treat me. It’s a decision that would have altered the course of…
It’s not just the closeness, the sudden proximity to people other than my parents. It’s not just the dearth of mask mandates. (You’ll pry mine from my stone-cold, long-dead hands.) It’s not even the sense of possibility — for the first time in over a year, I can go places,…
As a tiny tot, I crawled everywhere. I was the daintiest crouched explorer my backyard habitat had ever known. Once I crawled, my family soon beckoned me to begin walking. That’s how the sequence of life works, after all. When we’re given the breath of life, it comes with…
“It’s a dangerous business, Frodo, going out of your door. … You step into the Road, and if you don’t keep your feet, there is no knowing where you might be swept off to.” By now, my readers and editors are probably rolling their eyes at the absurd number of…
I’ll never forget March of last year when the pandemic began. Many of us didn’t realize how serious it was, and we didn’t know what to expect, how to handle it, or what we were in for in the months ahead. My family and I watched the news closely, read…
While life around here resembles a roller coaster most of the year, the frenzy ramps up in May as it always has. From my days of wrapping up classes as a student, to wrapping up IEPs as a teacher, to keeping up with end of school year activities…
