When I was 13 and fresh from spinal fusion surgery, I sat in a West End theater in London with my family, watching “Les Misérables.” The music stirred my soul and, for a fleeting moment, I imagined myself on stage. But that dream quickly faded. Accessibility barriers at school…
Columns
I’m a musician, and so are my brothers, Ron and Tim. We’ve all played professionally, but it’s been a long time since we’ve played together. That changed last month, but let me explain why it was such an event. Back in the late ’70s we were part of the…
There is power in connection. As humans, we all learn this truth at a young age, starting with the people around us when we’re little: our family. As we grow, we connect with other kids at school, in church, and elsewhere in the community, and just by existing every day.
As an artist with Duchenne muscular dystrophy (DMD), I’ve long recognized how creativity can foster meaningful connection, perhaps especially when rooted in design that’s accessible and inclusive. My partner, Amanda, and I recently spoke at GovTech’s Inclusive Design Week 2025 here in Singapore as part of the closing panel…
I’m no longer a young mom, but I was once. In fact, I was a very young first-time mom, as my oldest daughter, Lexi, 24, was born when I was 21 years old. Six more children followed: Max, 19; Chance, 18; Rowen, 16; Charlie, 14; Mary, 10; and Callie, 3.
Last summer, I wrote a column about my beach vacation with my family. It was an incredible trip, but I had my doubts about future travel. With my facioscapulohumeral muscular dystrophy (FSHD) progression accelerating, I had to acknowledge that future travel might be difficult, if not impossible. My daughter…
Last Sunday, my girlfriend, Amanda, and I co-led an art workshop that brought us both joy. The accessible art journaling session, “Why your story matters: Where art meets wellness,” was held at the Bishan Public Library in the northern part of Singapore and was part of the National Library Board’s…
Amid the hustle and bustle of daily life, many people tend to put off what I like to call “after-life” planning. It sounds a bit less scary than “end-of-life.” When I was diagnosed with muscular dystrophy at the age of 12, long-term planning never crossed my mind. (Do any…
Years ago, I had my colors done: I’m a winter. Dark blues, greens, scarlets, royal hues, red, black, and hot pink look best on me. I don’t always follow these guidelines, but I own a few statement pieces in these shades and wear them when I feel confident. On Tuesday,…
In a daily devotional I’m reading titled “Incurable Faith: 120 Devotions of Lasting Hope for Lingering Health Issues,” author Andrea Herzer describes pain as a thief, stealing her joy. Her words ring true for me as I navigate life with facioscapulohumeral muscular dystrophy (FSHD) and other health issues. Relentless…
Recent Posts
- A blind date with a book encourages me to dust off my social life
- New research reveals protein pathway that can slow muscle repair
- Dreaming of solutions to the Olympic-sized challenges of FSHD
- Roche halts development of satralizumab for DMD bone health
- An essay on choosing hope in life with a progressive, degenerative disease