Columns

The Power of Proximity to Ease Burdens

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…

Finding a Bit of Myself in Truman Burbank

“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…

Say Yes to Yourself and Your Ambitions

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…

I Don’t Want a World Without SMA. Here’s Why

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…

I’m Taking My Time Returning to Normal

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,…

Embracing the Growing Pains of New Wheels

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,…