For Duchenne survivors, dealing with grief provides us strength

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 first connected on social media over a poem from her collection “Shades.”

“Absence” is a profoundly personal performance constructed from poems in “Shades.” It explores the five stages of grief through the lens of a long-distance relationship spanning over a decade. The play is a powerful and emotional exploration of love and loss as Fam bares her soul to the audience. Her interpretation of grief resonated deeply with me, as I have Duchenne muscular dystrophy (DMD).

Grief is an inescapable part of life for those of us with disabilities, and particularly DMD. Our dependence on others for survival, coupled with the progressive nature of this disease, means that loss is a constant companion. The gradual weakening of our bodies feels akin to a slow, painful erosion of our very being, which can be overwhelming.

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Yet, I’ve come to view grief not as a purely negative force but as a transformative one. Grief shapes who we become, giving us the potential to grow stronger and more resilient. The late Stephen Hawking, who had ALS, exemplified this resilience, as his neurodegenerative disease didn’t prevent him from making groundbreaking contributions to science and leaving a lasting legacy. His life is a testament to the power of endurance and the redemptive quality of grief.

The loss in 2019 of my brother, Isaac, who also had DMD and would have turned 33 this month, profoundly influenced my own experience with grief. Despite his challenges, which included eventually losing the ability to express himself through art, Isaac faced his condition with unwavering faith and strength. His resilience and positive spirit continue to inspire me today.

As I reflect on my own journey, I realize that my grief has made me a stronger person and a more powerful advocate for the muscular dystrophy community. While the losses I’ve endured — such as the end of my earlier career in Chinese painting — are significant, they have also driven me to give back, whether by raising funds for the Muscular Dystrophy Association (Singapore) or writing for Muscular Dystrophy News Today.

While painful, grief has been a source of growth and fortitude for me. It has helped me become who I am today, and I am proud of how it has shaped my journey.

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.