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…
Columns
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…
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 and seasonal visitors bustle with new activity. I can’t claim…
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 going to close my eyes for just a few seconds,” I told myself.
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 when he becomes the head of the fictional Continental Studios. Yet while…
