Duchenne: Shalom's Lifelong Partner-in-Crime — Shalom Lim Ern Rong

Aug. 14 isn’t just another day for my family. This year, our conversations were imbued with heartfelt remembrance as we gathered around the dinner table. We celebrated the birthday of my brother, Isaac, even though he was no longer with us physically. Isaac passed away due to heart…

While writing this today, I’m marveling at how swiftly the passage of time has occurred. It’s been almost a year since I published my first column for Muscular Dystrophy News Today! In my debut column, I documented how, after more than two decades of battling Duchenne…

After 17 years, Shalom Lin is preparing to say good-bye to his caregiver, Glenda. Goodbyes are always painful but often necessary. Nothing lasts forever, so we must enjoy what we have with the people we love, he writes.

One cozy night last September, my parents and I relaxed in the living room after dinner. My father turned to me and asked for a movie recommendation. It’d been awhile since we’d done this — our cherished family tradition of watching movies together on weekend evenings. In 2019, we lost…

Readers of my column are familiar with my Duchenne muscular dystrophy (DMD) story, which began with my diagnosis in February 1996. My older brother, Isaac, was diagnosed with DMD at birth in August 1991. My family’s DMD story, however, dates back four decades from then, to 1951,…

This month, I had the rare opportunity to meet Dr. Brenda Wong, a native Singaporean and a professor of pediatrics and neurology at the University of Massachusetts Chan Medical School, where she was the founding director of its Duchenne Program. My parents had heard Dr. Wong’s name since…

Note: This column contains spoilers for the series finale of the Netflix TV show “Dead to Me.” As I write this, the date is April 3. I’ve just survived the longest and most helpless week of my life. Two Sundays ago, my support worker, Glenda, suddenly fell ill from…

On the evening of March 8, I was mindlessly scrolling through my Facebook feed when I stumbled upon a public post from Singaporean Paralympic swimmer Sophie Soon, who uses a guide dog for help with her visual impairment. In the post, which has now been deleted, Soon expressed grievances with…

On Feb. 18, I attended an ART:DIS event at the Singapore Art Museum (SAM) to kick off this year’s Arts and Disability Forum. It was a panel held with Project Art Works (a neurodivergent artist collective based in Hastings, England) to discuss the creative and diverse value…

Note: This column includes thoughts about suicide. Resources for help are listed at the end. On the verge of this new year, I was struck by what felt like a surrealistic event. It was a surprise I never expected, coming just three days before the end of my tumultuous 2022.

On Dec. 4, I performed British singer-songwriter Calum Scott’s 2017 pop ballad “You Are the Reason” at a live caroling session with ART:DIS, the first organization in Singapore to pioneer the artistic development of members of the disabled community. The performance was part of the annual Enabling Lives…

On Nov. 27, I attended a live performance by ART:DIS musician Sky Shen, an old friend from the Muscular Dystrophy Association (Singapore) (MDAS). The show featured his recent debut EP, “Wheel You Love Me?” — a collection of songs he wrote about his experiences with…