"I've written the book I wish I'd been able to read growing up."

Jack’s brother Sam passed away from Duchenne muscular dystrophy so he started writing a memoir of his life and their tight bond because he wanted others “to know they’re not alone”.

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Trigger warning: This content contains themes of bereavement and includes strong language. Please take care while reading.

2AM

You’ve given me some of your strength, Sam. I’m sure of it. I’ll take care of everything, don’t you worry. I got this. Your funeral, the coroners, whatever else that needs to be done – I’ll handle it all. I’m not wasting time. I’ll use this superhuman strength of yours to write your eulogy. Right now, in bed – my oldbed. I’ll get the ball rolling and work through this to-do list.

It’s two in the morning. I can’t sleep. I don’t think I will tonight. The police, ambulances, and even a helicopter ambulance have all left – I knew you’d go out with a bang! – and so have you. I had to be there with you; I didn’t want you lying on your own while the night-time strangers took you away.

Mum and Dad couldn’t watch, which was understandable. I wish I could’ve taken this away from them, especially for Mum – seeing you come into this world and then watching you leave it. I can’t even imagine. They stayed downstairs in the living room, holding each other’s hand, catching their helpless reflections in the black windows, realising that their lives were about to change forever.

“The first thing I noticed when I walked into your room was your smile.”

Content with your short but sweet life I imagine. Although your muscles were weakening day by day, you were remarkably able for someone with your condition. You made sure to savour your life. You tasted what it was like to have a girlfriend; one that adored you. You had a job that you cared about, where you felt valued. You had a wholesome number of friends – more than I have or ever will – we liked to keep score, didn’t we?

“You had parents who loved you, and a brother who was obsessed with you. I saw your cheeky smile and you told me not to worry.”

‘Take your antidepressants, do your counselling, get married to Agathe, go on a honeymoon, and write a book about me if you must. Do whatever you need to do. Look after yourself, Brother Jack. And take some of my strength. I don’t need it. I won’t be smashing Duchenne anymore, will I? Use the strength. Imagine it’s spinach and you’re Popeye. Don’t let the spinach go to waste. Especially in the days ahead when you’ll feel down in the dumps. It will help. You’ll see. Everything will be fine and dandy. I promise.’

I hope so, Sam. There has to be hope when everything feels so shit.

***

Your bed is empty, which is weird. What’s even weirder is that I’ve put your wheelchair in my bedroom for company. I can reach out and feel its familiar parts from my bed, tracing the worn areas on your armrests where your elbows used to rest. It’s a tight squeeze; I have to jump over your chair to exit the room, but I don’t mind. I’ve grown accustomed to living with that chunky obstacle.

“With your chair next to my bed, it’s almost like you’re here, like when we’d play FIFA for hours on end on my tiny TV. Those were the days.”

Hope you don’t mind me moving the chair. You weren’t the biggest fan of people touching it – moving the headrest, fiddling with the buttons. It was part of you. Your extended body. It must’ve been frustrating having people interfere with it all the time. I’m sorry for resting my feet on the framework, when we watched TV in the living room, for instance. I shouldn’t have treated it like furniture. I guess I just wanted to lean on you and feel that brotherly connection.

When steering your chair to my room, I tried to not bash it into any of the woodwork. Didn’t want to deepen the chips in the corners of the walls or add any new ones – we have enough of them already. I led the chair from your room into mine with the utmost care, like it was royalty. Your mobile throne.

Wish me luck with your eulogy. Writing about you – and to you – is all I can think about doing.

Maybe I’ll start it like this: You’re my god, Sam. The thing high up in the sky. That’s you. Soaring above the clouds in your electric wheelchair, your magic carpet.

“You made my world, and I love you for that. I won’t take it for granted, and I’ll never stop believing in you, as you never stopped believing in me, and everyone around you. You had faith in people, faith in life.”