Things I’ve gained while living with Duchenne muscular dystrophy
It's a season of change for this columnist, who takes stock of his accomplishments
As my time with the assistance dog charity I work for comes to an end, I’m seeking opportunities to occupy my time and keep me meaningfully engaged.
At the same time, I’m looking forward to discovering other means of employment to ensure that I realize my goal of self-reliance and financial self-sufficiency. This includes covering the costly medical fees and other healthcare expenses that come with living with Duchenne muscular dystrophy (DMD).
Recently, I completed my first proofreading assignment after connecting with a client via a mutual friend. Three years ago, after finishing college, I had considered professional proofreading as an occupation.
Different roles have aided in self-discovery
Given that DMD’s progression has made it difficult for me to work a 9-to-5 job, I must be creative and strategic in my career decisions to balance the need for a steady income while pursuing my passions with limited energy and stamina.
Before I joined K9Assistance here in Singapore in September 2022, I worked as a full-time apprentice for a research nonprofit, but it didn’t work out because of my difficulties meeting deadlines. Effective time management has been a lifelong struggle for me due to my attention-deficit/hyperactivity disorder (ADHD), which has significantly worsened since I started college in 2015.
In the years after that, I faced numerous setbacks that exacerbated my difficulties with time management and led to an ADHD diagnosis in October 2022.
Nevertheless, I got my first taste of working and faced a steep learning curve that prompted personal growth. This allowed me to regroup and focus on honing my strengths while improving areas where I was weaker.
As a result, when I joined K9Assistance, I exceeded expectations in the first six months, until my caregiver fell ill in March 2023. This underscores for me the key values of perseverance and resilience that come from being a DMD patient.
Just before starting the position at K9Assistance, I began my first writing job here at Muscular Dystrophy News Today. It’s a role I’ve relished, and it has allowed me to discover my voice as someone with Duchenne by articulating my lived experiences in columns.
Four months later, I performed “Breaking the Fourth Wall,” a poem about Duchenne that I was commissioned to write by the local disability arts charity ART:DIS, at the Singapore Writers Festival.
Fast forward a year and a half, and I’m now taking a theater course to fulfill my lifelong aspiration of becoming a playwright specializing in rare disease awareness.
Later this year, I’ll also be launching my first book with ART:DIS, an inclusive children’s story based on my childhood and experiences learning about and coping with a DMD diagnosis.
I’m also a board member of the Disabled People’s Association and will soon be appointed to the board at K9Assistance in July.
Why it’s worthwhile to have Duchenne
Since the death of my brother, Issac, who also had DMD, in 2019, I have experienced many ups and downs. But I’ve also found gainful employment and continue to contribute to causes in my community that I care about. None of this would be possible without Duchenne. So I soldier on.
Drawing on a popular anonymous quote, Helen Keller once wrote, “When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us.” Isaac taught me to embrace the joys of life with Duchenne amid the daily suffering.
DMD has taken so much from me, yet it has also brought me this far on my personal journey of finding love and acceptance as an individual living with a rare disease.
It sounds paradoxical, but my medical condition does not define me. My lived experiences do.
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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Neha
Very well written..