Seeing ‘Les Misérables’ reminds me of the arc of my own life with DMD
Watching the play after first encountering it as a teen was like coming full circle
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Last Saturday, I attended “Les Misérables: The Arena Spectacular” with my girlfriend at Marina Bay Sands in Singapore. This landmark resort includes a luxury hotel, a shopping complex, and a performing arts theater that hosts international productions.
A musical based on the novel by Victor Hugo, “Les Misérables“ is about second chances, justice, love, and survival. At its center are Jean Valjean, a man trying to rebuild his life after prison, and Javert, the officer determined to bring him back. Their lives collide in a story that asks what it means to be a good person in a difficult world.
As I sat there, I was taken back to 2009, when I was 13, and watched a production of it with my family in the West End of London. That experience made me fall in love with theater. It opened up a world that once felt out of reach for someone with Duchenne muscular dystrophy (DMD).
Struggle through the lens of Duchenne
DMD is a genetic condition that causes progressive muscle weakening and affects mobility, breathing, and the heart. Today, I rely on a BiPAP ventilator around the clock and have to manage my body and health carefully to avoid episodes of fatigue. Every outing is a delicate balancing act that combines planning, support, and load management.
Back then, I was still discovering what DMD would take from me. Yet, even at 13, I was drawn deeply to Jean Valjean’s story. His journey of redemption stayed with me. Over the last few years, I have come to see parts of my own life reflected in his arc. I have moved from a period of deep depression to a renewed sense of meaning and purpose, rebuilding my life step by step.
Watching “Les Misérables” all those years ago shaped more than my love for theater. It influenced my decision to pursue criminology in college and has guided my work today in disability justice, policy advocacy, and social entrepreneurship.
Key highlights of this show included seeing Singaporean thespian Nathania Ong, who played Éponine, perform “On My Own,” and the poignant performances by Jeremy Secomb and Geronimo Rauch as the two leads, who carried emotional weight and clarity that made the story easy to follow, even for first-time viewers. Plus, Filipino actors Lea Salonga and Red Concepción brought joy and humor to the story as the mischievous Thénardiers.
Why access shapes the experience
Getting to the theater was its own journey. Venues like Marina Bay Sands offer wheelchair-accessible seating and step-free access, making attendance possible. But access is more than infrastructure. It is about feeling safe, supported, and able to be present.
Living with DMD means I cannot attend spontaneously. My caregiver must be there. My ventilator must be secured. My energy must be conserved. These realities shape how I experience moments like this, and also deepen them.
After my ART:DIS theater course ended last November, I felt grateful to have finally experienced being part of the stage. That training fulfilled a lifelong aspiration. At the same time, I have now returned to enjoying theater as an audience member, rather than a maker.
Watching “Les Misérables” again, years after first encountering it as a teenager, felt like coming full circle. The story remains the same, but I have changed. Living with Duchenne has shaped how I listen, relate, and find meaning in stories of struggle, resilience, and hope.
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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