Experiencing the vicissitudes of life with Duchenne muscular dystrophy

Late last month I turned 28 years old, the age my brother, Isaac, was when he passed away from Duchenne muscular dystrophy (DMD). I have the same disease, and it’s put me through many exhausting battles. But each time, I’ve emerged stronger. In fact, I graduated with a graduate diploma in counseling three days after my Oct. 25 birthday.

Turning 28 may not seem like a big deal for most people, but for those living with DMD, every year lived is a cause for celebration and a testament to our character. We owe our lives to those who fought alongside us: our caregivers and our families, the pillars of support who carried us through our most difficult times as we grappled with the painful decline of our physical condition. Without my support worker and parents, I wouldn’t be the rare disease advocate I am today.

As I pen this column, I marvel at just how much I’ve experienced, especially since 2019, when Isaac passed away from heart failure. It’s been an incredible coming-of-age journey, from being dependent on my caregivers for every decision to now having complete control of my personal life. I’ve gone from a passive child to an assertive adult, from hankering after companionship and love to having someone to share my burdens and joys with.

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Difficulties as prelude to successes

It’s hard for me to fathom just how far I’ve come in the past few years. This time in 2021, in fact, I was still recovering from depression. My days were fraught with anxiety, and panic consumed my thoughts. There appeared to be no way out from what I was going through then, or so I thought. I’d given up on myself, wishing for the day I’d be free from the chains of DMD and regretting what had brought me to this point.

When I was just six weeks into my mother’s womb, my parents had a chorionic villus sampling performed to find out if I’d inherited the DMD gene from my mum. Isaac’s DMD came as an immense shock to them, and my father, being a doctor, was determined to prevent it from happening again. Doctors advised my father to consider an abortion if tests showed I had DMD. But the results came back negative.

That “miracle,” however, soon proved false. Ultimately, they had to pick up the pieces, which they did with resilience and resolve. As for me, was the false result a blessing in disguise? Perhaps I was destined to be born into this world with DMD, and the events before and after my birth showed that my existence hadn’t been by chance. I dodged the bullet of my life ending before it had even begun. Who knows what might have happened to me if the prenatal test results had shown I would have DMD?

Adversity was in my vocabulary from the start, and it’s continued. Whether it was pneumonia in 2011 or dengue in 2022, I’ve always been walking closely with death. But none of those experiences could compare with my greatest battle fighting the demons of depression in 2021.

In hindsight, my old self had to die for me to realize who I am to be in this life. Now, I’ve found meaningful work, developed a circle of support, taken charge of my mental health, and earned my graduate counseling diploma. I’ve also gotten to the bottom of my psychosocial problems, discovering their root cause to be my undiagnosed attention-deficit/hyperactivity disorder, a neurobehavioral condition commonly associated with DMD.

As DMD survivors, we’re constantly working against the clock. Time is not on our side. I’ve taken significantly longer than most of my peers to become a more independent adult, and I’m still in the dark about how long I’ve left to spend with my soul mate. My life has been a rough ride, and the road ahead will only get more challenging.

But that’s the beauty of a life with DMD. I’m better off having my condition, as it’s enabled me to experience the vicissitudes of life. And for that I’m grateful.

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.