One of my favorite pastimes is cruising the sidewalks of our downtown area all by myself. I have a wheelchair-accessible van, but I need my friends to drive it, which means I rarely go anywhere in public alone. There have been seasons in my adult life, though, when I’ve lived…
Columns
Did you know dogs can be diagnosed with SMA? I did. As a child, I used to stare up at a news clipping of research about the condition in canines, which was pinned to the wall in the office of the Muscular Dystrophy Association (Singapore) (MDAS). My…
While you might recognize Val Kilmer from iconic films like “Top Gun” or “Batman Forever,” the first of his movies I saw was probably one of my mom’s favorites, “The Saint.” It’s the story of an orphaned con artist who, stripped of his own identity in…
Starting with Brownies in second grade, my stint in the Girl Scouts lasted five years. The Girl Scouts’ motto is “Be prepared.” As the firstborn, Taurus child of teacher parents, that came easy for me. Growing up, I tended to be generally organized and responsible — a dream…
In 2001, I was a bright-eyed college freshman, ready to change the world with my bleached highlights, cargo pants, and purple-framed power wheelchair. I felt like I had already achieved and overcome so many things in the 18 years since I was diagnosed with spinal muscular atrophy type 2…
At the time I applied to be a columnist for SMA News Today, I knew just one piece of career advice: what you do in your personal life matters — especially if you’re a volunteer for anything. I was 19 when I received that advice. I had no formal…
Author’s note: I wrote most of this column on my phone while getting an atypical mole removed. If you wondered why I disappeared from social media, it’s because I’ve been busy crossing things off my medical bucket list, like getting shot up with lidocaine and watching a surgeon suture my…
Last December, my brother kept badgering me about what I wanted for Christmas. I was so sick with a respiratory infection at the time that my only focus was on getting better, not a present. Fighting any kind of respiratory illness can be life-threatening for someone living with…
In addition to moving into my new home in February, I’ve been experiencing several other major changes. I’ve been bracing myself for them since they arrive in waves. Thankfully, several anchors in my life add stability and prevent me and the wheels of my chair from being swept away. First…
Years ago, I taught kindergarten at a self-contained school for students with orthopedic and other disabilities. My charges were animated, and my assistant was delightful. At the end of my fifth year, my students were all mainstreamed to regular elementary schools, leaving me classless until days before the following year…
