When my younger brother and closest friend, Sam, passed away just shy of his twenty-seventh birthday from Duchenne Muscular Dystrophy, a muscle-wasting disorder that effects hundreds of thousands of boys worldwide, I began writing to him from the passenger seat of grief. What started as frantic messages on my phone during a train ride to say goodbye became an ongoing conversation between the living and the lost – a survival kit to keep him alive, and myself afloat. Through my own reflections, and the playful, poignant lists Sam left behind – regular fifteen-minute hobbies, current carer conundrums, ultimate hampers, and animals spotted from in and around his house – I’m on a Journey to See You, Sam captures a rare, tender portrait of siblinghood shaped by disability, humour, and love.
Told in dual voices – mine and Sam’s – the memoir stitches together moments of absurdity and heartbreak: shower-room antics, late-night confessions, holiday squabbles, accessible toilet mishaps, and bursts of impossible joy. It’s a grief memoir, yes, but also a tribute to connection in all its messy, neurodivergent, complicated beauty. From wrestling with the guilt of feeling responsible for Sam’s leg break shortly before he died, to rediscovering his voice through his voice notes, diaries, and lovingly kept lists, I’ve created a narrative that dares to be honest about caregiving, rage, mental illness, and the strange hilarity that sometimes shows up even in the darkest corners.
I’m on a Journey to See You, Sam is a deeply personal story, but it will resonate with anyone who has loved intensely and lost painfully. It’s for siblings living in the shadow of terminal illness, for carers caught between devotion and burnout, and for readers hungry for disability representation that isn’t sanitised. By blending memoir with moments of levity, visual storytelling, and Sam’s own writing, this book reminds us that connection doesn’t end with death – it evolves, it adapts, and it finds new ways to talk.
Extract from I’m on a Journey to See You, Sam
You’ve been gone for over two hours. I was enjoying a bowl of pasta Agathe had cooked when Dad called around seven-thirty. He told me you were in a coma. I couldn’t believe it. You and ‘coma’ in the same sentence didn’t make any sense. Comas are things that happen on TV, not in real life. How could you just come to a halt like that, without a proper goodbye? You were meant to be eternal, not terminal, regardless of what silly condition you had.
Not knowing if you’d be alive by the time I made it to Hampshire – but knowing I had to see you – I packed a quick suitcase, said goodbye to Agathe, who promised to come first thing in the morning, and left the flat.
I got another call from Dad while I walked with wobbly legs to West Acton tube station in the dark. He told me that you’d stopped breathing. I stopped dragging my suitcase.
‘What do you—I don’t get it.’
‘He’s gone, Jack.’ His voice was quiet, defeated. ‘He wasn’t responding to the defibrillator anymore.’
‘I don’t…’
‘I’m sorry.’
‘I’m coming now. I’ll come as fast as I can, Dad.’
‘Ok… He’s upstairs, Jack. You’ll be able to see him.’
Something left my body at that moment. Maybe it was you, Sam. A vacuum had sucked you out of my chest. I felt lighter … half-empty. My hands and legs shook relentlessly, making it hard to grip my phone. I was a spasming mess on the quiet residential roads of Acton.
Although my limbs have eased since that call forty-odd minutes ago, they’re still tense. My arms are raised like a T-Rex. I’ll try to loosen them up. Slightly irrelevant, but ‘T-Rex arms’ are said to be an ADHD trait. I’m noticing these things more now after my recent diagnosis. Getting distracted is another. Anyway.
West Acton to Waterloo was the worst tube journey of my life. I’ve never felt as alone as I did then. So helpless. Just me, my suitcase, and a carriage-load of regret. Two teenagers in tracksuits stared at me as I cried through the tunnels. I couldn’t stop thinking about how I was the cause of your leg break last Christmas, and how that might haunt me forever. I’m sorry about your left leg, Sam, but we can talk about that later. Baby steps, ok?
The train isn’t much better. I’m stuck on a busy carriage full of loud, talkative faces with an hour to go and no idea what to do.
Help me, Sammyboys.
Jack is currently in the process of pitching his memoir to publishers. You can follow Jack on Instagram where he will post updates of the book’s journey.