I’ve written previously about how those of us with facioscapulohumeral muscular dystrophy (FSHD) often adapt without even thinking about it to increasing weakness as a result of our disease progression. For me, the most recent example of this is the knee grab exercise. This may be an old, well-used…
Columns
We had a medical scare last week, and we handled it like professionals. I hate that about us. The day started like most days for our big family. I took our daughter Callie to preschool, and then, because it was fall break, our son Charlie had band practice at 9…
Last Friday, my girlfriend, Amanda Yip, and I celebrated the second year of Rebirth Ensemble, the disability-led creative business we founded in Singapore in October 2024. We began with an ambition: to make art more accessible. Now, we’re exploring creative storytelling, multisensory art, and accessibility consultancy. Yet the biggest change…
Tuesdays are my writing days. My column publishes on Fridays, and the draft is due early Wednesday morning, so I write on Tuesdays. I should be a column or two ahead, but I’m a busy mom, and it never works out. My husband of 25 years, Jason, and I share…
Four years ago, my family enjoyed a week’s vacation at Bethany Beach, Delaware. There were many great moments that made this trip with my children and grandchildren memorable. There were also a couple of misadventures. We spent a day on Virginia’s Chincoteague Island, which is famous for its population of…
It seems to be a theme in our lives: Lifts and elevators work great — until they don’t. I am a mom to many: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 12; and Callie, 4. Three of my sons, Max, Rowen, and Charlie, have Duchenne…
Last week, I lost my dear friend Aloysius Teo, who passed away at the age of 40. Aloysius didn’t have Duchenne muscular dystrophy, the progressive genetic condition I was born with, which weakens muscles over time, including those used for breathing and heart function. I use a wheelchair…
Living with Duchenne, columnist Shalom Lim reflects on how AI can improve accessibility and why people with disabilities must help shape its development.
Managing my condition is a full-time job. Muscular dystrophy (MD) has woven its way into more than just my muscles. It takes a mental toll as time goes by. The hours tick away. The cells tick away. I was 12 when I learned of my diagnosis. I…
It’s been a big week for the Vertin Party of 9. We moved into our new home, and after only a week, the blessings seem boundless. I’m so thankful to share this because, as you can imagine, moving a large family is a tremendous undertaking. My husband, Jason, and I have…
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