A rough month makes me grateful for what I’ve got
Coping with an infection helps put my life and dreams into perspective
Last month was tough for me. Although celebrating my partner’s birthday on June 12 was a welcome distraction, I still had a June I’d like to forget, mainly because I spent the entire month recovering from a foot infection that hospitalized me for the last three days of May. And after that I had an unbearable skin rash, instigated by prolonged antibiotic consumption to ward off any possible risk of reinfection.
The foot infection started on May 18, when my dad, a medical doctor, surgically removed my ingrown toenail, causing me excruciating pain. Unfortunately, the entry wound left my left foot infected, causing body aches and a low-grade fever. I entered the hospital about a week later.
That caused me to miss the term’s last lesson for the theater course I’m pursuing with the disability arts charity ART:DIS. It was through this organization that I published my children’s book, “Callum’s Courage,” and inspired my friend and fellow Bionews columnist, Sherry Toh of SMA News Today, to do the same. We celebrated these publications here in Singapore on May 23 — just three days before I took ill.
Reflecting on this sorry episode has been difficult because my relationship also suffered because of it. Heartbreakingly, I’d just resigned from my position at K9Assistance, a nonprofit that champions assistance dogs for the disabled. Anxiety and uncertainty have engulfed us as we’ve considered how we’ll support ourselves as a couple in a future together.
A like-minded comrade
However, I still found joy amid the dark clouds of that period. On June 5, I presented a paper — my first academic publication — at an online disability symposium, where I shared how disability studies have transformed my life with Duchenne muscular dystrophy, reframing it to be resilient instead of defining it by stigma.
In a fortnight, I became a published author of children’s fiction and disability studies. I was following the footsteps of Sherry, who contributed a chapter on video game accessibility to a local anthology published last year. It was a career milestone worth celebrating.
Nonetheless, my long-term plans to move in with my partner and live independently from my parents remain distant dreams. With a rare disease, it’s hard to even fathom an independent life, given the many physical and social barriers people with disabilities face. It’s a challenge to even find acceptance.
That said, I’ve been blessed to grow up in a middle-income household with loving parents and siblings, so money isn’t such a concern. That’s not the case for families with disabilities who don’t possess that luxury.
I’ve been comforted by the impactful stories published about Sherry, who’s become a trusted confidant in the few years since 2019, when I lost Isaac, my brother and closest companion, to Duchenne. I’m amazed and inspired by her advocacy and drive to gain recognition for her rare disease, spinal muscular atrophy, and improve the welfare and lives of those who have it.
It makes me aspire to do more for my community and better the lives of Singaporeans with muscular dystrophy.
Fresh opportunities lie in wait
In another bright spot despite my June difficulties, I’m also involved in a study by the National University Hospital here to design an adaptive device that would enable me to live independently and control my home ecosystem, including my work computer, light switches, and power wheelchair.
One of the project’s goals is to allow me and others with muscular dystrophy to still play video games, even after we’ve lost the ability to hold a traditional joystick. In my case, I believed my dexterity problems would prevent my continued playing, despite my being an avid sports gamer. There’s only a tiny chance, but if I could play EA Sports FC (electronic football) again, I’d seize that opportunity.
Lastly, I’m pursuing a lifelong aspiration to write plays through the pioneering ART:DIS acting program in disability-led theater. As we’re busy preparing for a groundbreaking “first ensemble verbatim showcase” at the Enabling Lives Festival on Nov. 30-Dec. 3, I’ve been assigned to perform a script based on the voice of a fellow Duchenne survivor and his views on life, love, and disability.
Working with his thoughts in the script has been enlightening, providing me with a fresh perspective on life. His passion for finding romantic love has reminded me how lucky I am to have someone who accepts and loves me for the person I am.
While I recognize that what I have now won’t be forever, I want to spend the rest of my days cherishing every part of it dearly and giving thanks.
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 or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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