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,…
Duchenne: Shalom's Lifelong Partner-in-Crime - a Column by Shalom Lim Ern Rong
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…
On Nov. 10, I delivered my second poem, “Breaking the Fourth Wall,” at an engagement by ART:DIS, the first organization in Singapore to pioneer the artistic development of members of the disabled community. The goal of ART:DIS is to unearth the creative talents and diverse gifts of disabled Singaporeans…
I celebrated my 27th birthday on Oct. 25 and feel tremendously blessed to have made it this far, especially with Duchenne muscular dystrophy. Duke (my pet name for Duchenne) has taken me through many arduous trials and difficult times, including feeling marginalized within my own disability community. Still,…
Recent Posts
- Starting corticosteroids earlier helps improve motor function in DMD
- A tribute to a friend who taught us how to love, lead, and show up for others
- Patient-led group launches network of clinics to improve LGMD care
- To me, a wheelchair is a symbol of improved function, not disability
- When school is out, my sons with DMD get into their summer groove