Reading is one way I adapt to change with Duchenne MD

On Sept. 6, I attended the launch of ReadSG at Singapore’s National Library to support my girlfriend, Amanda Yip. ReadSG is a five-year national movement by the National Library Board, Singapore’s public agency for libraries and archives, that encourages people to make reading an everyday habit, starting with just 15 minutes a day. It was officially launched by Singaporean President Tharman Shanmugaratnam, the movement’s patron.

Amanda spoke during a session titled “Growing Up, One Book at a Time.” As an artist and accessibility advocate with a vision impairment, she shared how her love of reading began with picture books as a child. As her eyesight changed, the ways she accessed books changed, too. Listening to her, I thought about how Duchenne muscular dystrophy (DMD) has changed my relationship with reading.

How Duchenne changes the way I read

DMD is a genetic condition that progressively weakens muscles, including those that are responsible for movement, breathing, and heart function. Today, I use a manual wheelchair and depend on a ventilator around the clock. Those realities shape almost everything I do.

Reading is no exception.

As a child, I could pick up books, turn pages, draw, and write for hours without thinking about the muscles involved. As Duchenne progressed, I gradually lost those abilities. Today, holding a heavy book or turning pages independently is difficult with my hands and arms.

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Yet muscle loss hasn’t taken reading away from me. Digital books, audiobooks, and accessible technology give me other ways to enjoy stories and information. Rather than giving up something I enjoy, I’ve changed how I access it.

Amanda’s story resonated with me because of that. Our disabilities affect us differently, but both of us have learned that losing one way of doing something doesn’t mean losing the experience itself.

Adapting to physical changes alongside Duchenne

I’ve spent much of my life adapting this way. I once walked independently and painted for hours. Today, I need assistance with almost every aspect of daily life. Duchenne keeps changing what my body can do, so adaptation has become part of growing older with this disease.

There are days when I miss doing simple things without asking someone for help. Yet reading reminds me that doing something differently doesn’t make it less meaningful.

Amanda may read differently as her vision changes. I may read differently as my muscles weaken. Yet we’re both still readers.

Duchenne has rewritten many parts of my life, but it doesn’t get to close the book. I’ll just keep finding new ways to turn the page.

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.