Nick Adigu Burke is a writer who lives with Becker muscular dystrophy. He shares his beautifully written story about the added complications he’s encountered with having heart failure on top of a muscle wasting condition, how this has affected his mental health, and why writing has helped him find an outlet for the challenges of life.
Rewriting the future: how writing set me free
With my heart function below 5%, my mum was told to prepare for the worst.
I knew all wasn’t well at eighteen—when I would randomly fall while playing football. An issue that wrecked my confidence, re-awoke my childhood stammer, and made me quit the sport I loved.
Initially I tried to ignore my muscle weakness. Only visiting my doctor when my speech therapist mentioned the stiff way in which I climbed the medical centre stairs.
After several hospital tests and a muscle biopsy, my life turned upside-down… I already stammered—how the hell was I going to pronounce Becker muscular dystrophy, let alone live with it.
“Now, instead of the freedom of adulthood, I saw nothing but shackles.”
After reading the diagnosis pamphlet, my only question was ‘when would I end up in a wheelchair?’ Never thinking about complications!
A year later, after a heavy cold, I was hospitalised with severe breathing difficulties. With a resting-pulse of 150 bpm, and my heart functioning below 5%, I was diagnosed with heart failure.
I couldn’t cry, and my mum couldn’t speak—all she could do was hold me tight. It didn’t seem real, as though I was seeing my life through another man’s eyes.
As I lay on the hospital bed staring at the ceiling, my mum was being told that my only chance of survival was a heart transplant, which couldn’t be offered because I had muscular dystrophy.
Now, it is quite possible that the hospital corridor still speaks of a mother; who sat on its floor and refused to move, until her son was treated. Thankfully, a young cardiologist took pity. Or, at least—dared not argue with her. Nonetheless, he made me his first patient.
Following my hospital discharge, with boxes of medication and my heart functioning at 10%, something strange happened. I felt peace for the first time ever. The prospect of imminent death, as I saw it, became therapeutic. In short—I was happy with life and the way I had lived it.
“As my heart slowly regained strength, my peace disappeared. My future had returned, but with it, the uncertainty of life with muscular dystrophy.”
After initially failing my A-Levels, I graduated from the University of Salford in 2006 with a degree in business finance.
On graduating, I worked several jobs including web developer and Citizens’ Advice Bureau advisor, before joining the civil service in 2011.
Not long after, I discovered a new “sport”, writing; and met my then partner, Charmaine, who brought three incredible kids into this world, Michael, Aria, and Thomas.
Fatherhood inspired me. I wrote of love and nature, beauty and hope, spirituality, and being human—what it means to be alive. I found that writing freed me from the body that jailed me; it allowed me comfort in the characters and worlds that I created.
In 2020, the civil service medically discharged me, and three months later, I was hospitalised again—with septic pneumonia.
Pneumonia was terrifying. I could feel my life physically leaving. Thankfully I got through it, but not before more damage to my heart and lungs.
During my recovery I became determined to make something of my passion; and in 2024, enrolled at Manchester Metropolitan University to study for a Master’s in creative writing. I needed something that would help me improve my stories and make my kids proud.
“Despite my positivity, two months later, after being frozen with imposter syndrome, I nearly quit my course. I didn’t believe I was worthy of my place among my peers.”
However, I’d come too far to give up.
While writing my first master’s essay, I discovered that I would be assessed for the heart transplant that I was refused 24 years earlier!
Although overjoyed, it was difficult to focus on my studies. I almost missed the deadline, eventually submitting my essay with a minute to spare.
While I awaited my mark, I received a call from the transplant unit. A bed had become available, and they asked if I would come in for my assessment.
They tested everything: heart, lungs, bones–even my teeth! After a week, I left the unit and crossed my fingers.
As I awaited that result, I received my essay mark—72%. I was speechless. I might’ve even danced.
Unfortunately that joy didn’t last. Days later, I received the news that my heart transplant had been rejected. The severity of my muscular dystrophy, the reason.
After two days of feeling sorry for myself, I was determined to continue as normal. In truth, nothing had really changed. I still had my kids to look after and my studies to complete.
Three weeks later, I wrote my second master’s essay and received a healthy 68%, and in recent weeks, a third (82%).
My essay results ended my doubts. I’ll complete my studies in September 2026. And perhaps one day, you’ll see my name on the Booker Prize nominees list—who knows. After all, what is life without dreams?
