I define my story, even when Duchenne rewrites the script
Life with Duchenne rarely follows a neat arc
I’ve often written about learning to live alongside uncertainty. Duchenne muscular dystrophy has a way of quietly shaping plans, then loudly interrupting them.
Last July, that disruption arrived as burnout during rehearsals for my graduating showcase at BEYOND DIS:PLAY, a performing arts training program in Singapore for disabled artists at ART:DIS, the country’s leading arts charity supporting persons with disabilities. It was also where I met my girlfriend, Amanda.
Duchenne is a progressive, genetic, muscle-wasting condition that weakens the body over time, affecting both breathing and the heart. For many of us, adulthood brings wheelchair use, ventilatory support, and a constant need to manage energy. I live with restrictive lung disease and depend on assisted breathing, so long rehearsal hours always carry a cost for my body.
Still, I wanted to test my creative and emotional limits. For my showcase, I wrote my first play, “The Other Side,” which centers on a young adult with muscular dystrophy and their older sister, who is also their sole caregiver.
After a diagnosis of final-stage heart failure, the character is offered physician-assisted suicide under a newly legalized law in a dystopian Singapore, available to terminally ill patients with a prognosis of six months or less. The story explores what true dignity means, and how loving someone can require letting go of our own ideas of what is right.
Adapting without losing oneself
Writing the script alongside three professional theater mentors grounded me. Writing has always suited me more than performing, especially given my physical limitations.
I never joined the program aspiring to be an actor; my goal was to learn playwriting. Yet, with so few trained actors living with Duchenne in Singapore, my trainer and I agreed that I would play the lead role.
That decision carried weight. Duchenne does not respond kindly to sustained pressure, whether physical or emotional. As rehearsals intensified, my mental health began to unravel.
Stepping away from acting was painful, but honest. It wasn’t a failure of commitment or discipline; it was my body speaking clearly after months of trying to keep up.
An unexpected lifeline appeared when a friend with a similar condition asked to join the program, eager to learn acting while she still could. Her presence allowed the play to continue in a new form, one none of us had imagined at the start.
Life with Duchenne rarely follows a neat arc. Plans shift, roles change, and expectations must be recalibrated. What endures is the need to adapt without losing oneself in the process.
I’ll share more about how this unfolded next week. For now, I’m holding on to one lesson: Duchenne has taught me to expect the unexpected and to keep writing my story, even when the script changes.
Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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