Rediscovering my creative self has been one of the most fulfilling yet challenging parts of my journey with Duchenne muscular dystrophy (DMD). A few weeks ago, I started an exciting adventure with Wildly Creative, a 14-week arts and wellness program run by the Singapore theater company Wild…
Duchenne: Shalom's Lifelong Partner-in-Crime - a Column by Shalom Lim Ern Rong
A few days ago, I watched the Netflix documentary “The Remarkable Life of Ibelin.” I wasn’t prepared for how deeply it would move me. The film follows Mats Steen, a young man from Norway who lived with Duchenne muscular dystrophy (DMD). Online, he was known by the avatar…
Living with Duchenne muscular dystrophy (DMD) has involved a series of challenges and triumphs, each shaping the person I am today. As 2025 approaches, I’m reflecting on that journey as well as imagining the path ahead — especially since the coming year includes a significant milestone for me. I’ll…
Last Saturday, I performed a monologue titled “Connection” at the Enabling Lives Festival here in Singapore. ART:DIS, a local nonprofit that uses the arts to support people with disabilities, organized the event as part of its BEYOND DIS:PLAY performing arts and theater mentorship program. The festival centered on a…
On Saturday, I presented at the Participation — Inclusion in Action Conference 2024, which was held in my home of Singapore for the first time. My physiotherapist at the National University Hospital, who’s also a disability and healthcare researcher and one of the event’s key organizers, invited me to…
Three weeks ago, my girlfriend, Amanda, and I embarked on a unique journey by co-founding Rebirth Ensemble (RE), an art-making business with a distinct purpose. This partnership is deeply rooted in our shared passion for visual art, which has been a source of joy but also a progressively tricky challenge…
Since September, my life has moved in an exciting new direction, starting with becoming a marketing communications assistant at Shalom Medcare (SMC), a medical transport company here in Singapore. In case you’re wondering, yes, I realize it’s amusing that the company and I share the name “Shalom” — something…
Last Saturday, I had the honor of participating in the third Singapore Health Patient Advocate Connection event (SPACe) hosted by the SingHealth Patient Advocacy Network (SPAN). As a cast member of the incredible SPANtastic Theatre plenary skit team, I not only had the chance to perform, but also…
While observing World Duchenne Awareness Day over the weekend, I reflected on the journey my family and I have taken, which has been shaped by Duchenne muscular dystrophy (DMD). This year the Muscular Dystrophy Association (Singapore), or MDAS, celebrated the day during its annual Go the…
Earlier this month, I attended the debut of Stephanie Esther Fam’s play “Absence” at Singapore’s Gateway Theatre Black Box. Fam, a leading Singaporean poet and playwright in disability-led theater, is also a close friend of mine. Although I had known of her work for some time, we…
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