Reflecting on 2 positive years of life, love, and Duchenne

Two days ago I marked the second anniversary of my relationship with my girlfriend, Amanda. As I celebrated this milestone, I found myself reflecting deeply on how much our lives have changed since we became a couple.

Duchenne muscular dystrophy (DMD), my lifelong companion, has undoubtedly influenced our journey together. But instead of posing a challenge, it’s brought us closer in profound and surprising ways.

When Amanda and I first crossed paths, romance wasn’t on my radar. We met during a drama workshop hosted by ART:DIS, a charity here in Singapore that supports people with disabilities in the performing arts. This workshop, which aimed to bring together artists who shared this passion, became the catalyst for our relationship.

Initially connecting over theater, we soon discovered an even stronger shared love: visual art. Amanda, a visual artist and performer with impaired vision, sees the world uniquely, offering perspectives that enrich both our relationship and my understanding of art.

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Amanda has taught me that beauty exists beyond what the eye can see. Her perception of life, filled with nuances often unnoticed by those of us who rely on our eyes, continually inspires me.

Despite her visual impairment, she creates stunning visual art and performs onstage with grace and confidence. Through her, I’ve learned to appreciate the subtler elements of the world — sounds, textures, and emotions — that have profoundly affected my creativity and advocacy.

Embracing Duchenne, embracing myself

My journey with Duchenne has never been straightforward. For many years, I struggled to fully accept the limitations it imposed on me. But over these past two years with Amanda, I’ve experienced a fundamental shift.

Instead of something to overcome, Duchenne has become something to embrace. It defines me not through restriction, but through my strengths — creativity, empathy, resilience — that I might never have discovered without it.

Amanda’s unconditional acceptance played a vital role in this transformation. She showed me that true love sees beyond physical ability. Her support helped me let go of past traumas, setbacks, and disappointments, allowing me to finally cherish my identity as a Duchenne survivor.

Today, I’m proud of who I am, precisely because of how Duchenne has shaped me. As I approach my 30th birthday this October, these past two years stand out as particularly transformative.

Thanks to Amanda’s presence and our shared experiences, I’ve emerged stronger from what was undeniably the most turbulent period of my life, from 2019 to 2022, marked by profound depression and grief from religious trauma, bereavement, thesis failure, an identity crisis, and career setbacks.

In those dark times, I couldn’t imagine reaching this point, let alone embracing it with joy. Yet here I am, celebrating two meaningful years filled with love, learning, and mutual growth.

Amanda and I have co-founded Rebirth Ensemble, a visual arts collective that challenges perceptions of disability in the art world. This initiative, born out of our shared experiences and mission, has not only strengthened our bond, but also fueled my advocacy efforts. It serves as a potent reminder to others with Duchenne — and indeed, everyone — that our lives and stories matter deeply.

DMD, my constant companion, has brought challenges, but it’s also brought unexpected gifts — most significantly, love. Our anniversary reminds me that the measure of a life isn’t in achieving perfection, but in connection, understanding, and embracing the person I am. I can’t wait to see what the future holds for Amanda and me, continuing to face whatever comes next, together.

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.