Why I’m grateful for Muscular Dystrophy News Today
Reflecting on one year of writing about life with Duchenne muscular dystrophy
In my debut column, I documented how, after more than two decades of battling Duchenne muscular dystrophy, I’d begun to find true meaning and purpose in my identity as a patient-survivor and a rare disease advocate. I’d even come to see the genetic condition not only as a daily experience or lived circumstance, but also as a close companion in times of depression and isolation.
Looking back at the last 12 months with BioNews (the parent company of this website), it’s been an eventful ride. Despite onboarding in June 2022, it took me two months to draft and write my first column, as I was still emerging from the ashes of 2021 — the darkest period of my life. In July, dengue struck, putting a halt to all the progress I’d made with my mental health recovery, and I had to start from scratch. I’m thankful that the staff at BioNews was still willing to have me on board, despite my two-month delay in starting the job.
The opportunity to write for this website gave me a fresh start and a helpful diversion after my close shave with death due to dengue. It allowed me to restart and get my life back on track, especially after I botched a couple of rare opportunities to publish research work. It didn’t help that, a year earlier, my college didn’t grade my bachelor’s thesis due to an accidental yet careless plagiarism error I made while writing it.
My role as a columnist gave me renewed hope and optimism, rekindling my self-confidence as a creative writer and enabling me to enjoy it again. I didn’t think this would be possible.
While I’m still coming to grips with writing conventions and professional guidelines, particularly deadlines and privacy rules, it’s been an unforgettable learning journey thus far. I hope to continue for as long as possible. I didn’t expect writing about my life with Duchenne to be so satisfying.
Writing has not only helped me process the pain and suffering I’ve experienced, but it’s also enabled me to view my circumstances differently. Ultimately, the “disease” is not Duchenne; it’s the way mainstream society and healthcare institutions make light of survivors’ needs. Furthermore, I neither suffer because of my condition nor overcome life’s challenges despite it. I am who I am because of Duchenne. Without it, I wouldn’t be writing this today.
Reflecting on my journey with BioNews thus far, there remains much room for improvement for this novice writer. The road ahead will be full of steep learning curves as I seek to improve my communication skills as a patient advocate and write more compelling and engaging columns.
But I’m up for the challenge because of Duchenne. Muscular Dystrophy News Today has given me a platform to share my story outside of Singapore, where I live. Duchenne enabled me to find a new calling and a voice for those with muscular dystrophy. I couldn’t be prouder of where this job has brought me, which is why I’m so grateful to be writing for you, the readers.
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.