How I Define Love With Duchenne Muscular Dystrophy
A columnist offers unique insight into changing concepts of love
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On Nov. 27, I attended a live performance by ART:DIS musician Sky Shen, an old friend from the Muscular Dystrophy Association (Singapore) (MDAS). The show featured his recent debut EP, “Wheel You Love Me?” — a collection of songs he wrote about his experiences with love as a disabled artist. I enjoyed the lively performance.
When I first became acquainted with Sky in school nine years ago, I was still reeling from losing my ability to draw, paint, and write due to a progressive decline in dexterity and motor function caused by Duchenne MD. I was struggling with “finding my feet” during a period of my life when the painful death of my identity as not just a creative but also a young person made me grow increasingly distant from my nondisabled peers in school. I was turning into someone I no longer recognized as me.
During that time, I lost so many people I thought were friends but who turned out to be passing acquaintances on my tumultuous journey of self-acceptance. Sky and my best friend, Michelle, were the only friends I made at school who remain close to me today.
Growing up with MD
Last year, another old friend from MDAS, Oh Boon Keng, published his first autobiographical book, titled “Can I Love?” The book is a memoir of his pursuit of romantic love and self-acceptance as a disabled adult. Boon Keng was a regularly invited guest at birthday parties for my late brother, Isaac, and me when we were young. He was a year older than Isaac.
In those early years, we participated in many MDAS activities together, including art and craft workshops, boccie, powerchair football, music lessons, and swimming. Boon Keng had always been an avid music fan and an aspiring musician like Sky. He was a special guest performer at a charity art book launch Isaac and I held for MDAS in 2007.
Boon Keng and Sky have had a lasting impact on my journey with muscular dystrophy as fellow survivors. In their work, both articulate a desire and struggle to find romantic love while growing up with MD. However, they also emphasize the message that love is an inclusive experience that can be found in diverse places and through faith and friendship.
Finding lasting romance with muscular dystrophy can be a fruitless endeavor. That said, lifelong companionship doesn’t have to be restricted to the romantic dimension. It can also be found in the platonic realms of lasting friendships and divine spirituality.
Growing up with Duchenne, I longed for emotional intimacy and lifelong companionship with someone outside my immediate family. I was a huge fan of Disney cartoon fairytales like “Cinderella,” “Snow White and the Seven Dwarfs,” and “The Little Mermaid.” I believed in the existence of happily-ever-after tales, love at first sight, and soul mates. Innocent as I was, I thought I could spend the rest of my life with the person with whom I felt the deepest spiritual connection. But as I learned more about the world, that beautiful vision evaporated.
As a child, I always thought romantic love was a gender-blind concept and experience and believed that human beings who are in love with each other deserve to spend the rest of their lives together, regardless of their individual and cultural differences. To me, love has no boundaries, and neither is it solely restricted to the romantic and binary narrative that popular culture is fond of glorifying.
In a conservative society like Singapore, disabled people are often seen as passive recipients of their caregivers’ love and nothing more, and disabled bodies are rarely regarded as romantic or sexual beings, if they’re regarded at all. As I became more disabled in my teenage years, a combination of these factors made me give up on love entirely. Love became just a word. It wasn’t until my college years that I began discovering and embracing my identity as a person capable of love, irrespective of muscular dystrophy.
An alternative look at true love
Romantic and sexual relations have never been something I have personally longed for in a lifelong relationship with that special person. What keeps the relationship going is not the type of fleeting love that mainstream culture likes to put on a pedestal. Rather, for me, true love is found in the emotional, intellectual, and spiritual intimacy between kindred spirits.
The relationships I have fostered with the divine and with others while having Duchenne MD have been the strongest ways I’ve experienced love on my terms. I’ve also experienced love from my faithful family, who have been my pillar of support, and close friends from the muscular dystrophy community. Call me weird, but I do know what love is, despite having never been in a romantic relationship.
Note: Muscular Dystrophy News 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 or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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Comments
Derek Roper
Hi Shalom, I really enjoy your stories and insight into life with DMD. My 4 year old son was recently diagnosed and your positivity and outlook gives me hope. I hope you have a great 2023.