Jack’s story
Jack shares his story about the death of his brother Sam, and how writing became a way to stay connected to him.
I lost my brother Sam to Duchenne muscular dystrophy, a rare muscle-wasting condition that gradually weakens the body and primarily affects boys. It’s a brutal disease that slowly takes away independence while leaving intelligence, humour and personality untouched.
Growing up, I always knew Sam’s life would likely be shorter than most. Duchenne makes sure of that. Yet knowing something intellectually is very different from experiencing it. Nothing prepared me for the shock of losing him.
The cruel irony was that Sam seemed to be at the peak of his life. He’d recently found a girlfriend. He had a group of close friends who adored him. He was working in a job he was genuinely proud of. I couldn’t have been happier for him.
“The cruel irony was that Sam seemed to be at the peak of his life. I couldn’t have been happier for him.”
For someone living with Duchenne, he appeared so strong. Yes, he wore a ventilator at night. Yes, he had begun struggling with simple things like holding cutlery. But he was taking the right medication, doing the right exercises and facing every challenge with stubbornness and determination.
From the outside, it felt as though he was going nowhere. He was my Strong Sam.
Then my dad called to tell me he had died. My stomach dropped. I got on a train to see him one last time.
As the countryside rushed past the window, I found myself reaching for my phone. In moments of stress or uncertainty, Sam had always been the person I turned to. He was the one I’d message, call, joke with or vent to. But now he wasn’t there. So I did the only thing I could think of. I started writing to him.
Not because I wanted to write a book, or because I thought anyone else would ever read it. I simply didn’t know what else to do with my grief.
At first, the messages lived hidden away in my phone’s notes app. They were scattered thoughts, questions, memories and conversations with someone who could no longer answer back. I kept writing out of desperation more than intention.
Eventually, those fragments became something bigger. A story started to take shape. Without ever planning it, those notes became a memoir: I’m on a Journey to See You, Sam.
The book isn’t polished or neatly wrapped up. It’s messy, emotional and sometimes darkly funny in places it probably shouldn’t be.
In many ways, it reflects how my mind works. As someone with ADHD, grief felt strangely familiar. Both pull your thoughts in unexpected directions. Both can leave you stuck in the past one moment and overwhelmed by the present the next. I wanted the book to reflect that staccato reality.
The narrative jumps around. Some chapters are raw and immediate. Others are more reflective. Together, they capture what it feels like to lose a sibling and then attempt to carry on in a world that seems to move forward as though nothing has changed.
Growing up with Sam shaped every aspect of my life, often without me realising it. Our normal included wheelchairs, hospital appointments, care routines and the elephant in the room that time together might be limited.
Looking back, I can see how much that shaped the way I think, the way I love and the way I approach life. Only after losing him did I fully understand how much being Sam’s brother had become part of my identity.
When that sibling-shaped half of your life disappears, you’re left trying to work out who you are without it. If I’m not Sam’s older brother anymore, who am I? But maybe I can still be his brother…
“Sibling grief is rarely talked about. It can feel invisible, overlooked and incredibly lonely.”
Through this book, I’m simply trying to keep our connection alive. It’s a continuation of a conversation I wasn’t ready to end.
The fact that it’s now published still feels surreal. Sometimes I find myself wondering what Sam would think of it all.
I’d like to think he’d laugh at the inappropriate jokes, cringe at the overly emotional bits and probably tell me to not be so hard on myself. But secretly, I hope he’d be proud.
If you’ve lost a brother or sister, or if you’re living in that strange afterplace where life continues but nothing feels quite right, I hope this story helps you feel a little less alone.
You can find out more about I’m on a Journey to See You, Sam at www.jackwaddington.co.uk.
