always injured.’
I want to say more, but I can’t. I only get to meet Graham once a year, so it’s like I have to get to know him all over again.
‘Tell you what, why don’t we just watch the DVD to remind us where we are. He gets up, takes a DVD out of the silver box and puts it in the player. New-cameraman-David moves towards
the window.
‘Here we go.’ Graham hands me the remote and sits down beside me.
I press play.
The Bubble Boy. Highlights.
We watch a montage of my life: me wearing a Spider-Man suit and sitting with Mum and Dad on my birthday. Mum and Dad talking to Graham, Mum smiling, Dad looking worried, me pretending to ride a
quad bike around my bed. Me sat in bed with a bald head from chemo when I had the bone-marrow transplant. Beth crying, me crying, me and Beth hugging each other after the transplant didn’t
work. A picture of Mum and Dad on the front of a newspaper. Doctors looking at my charts, Graham talking to the doctors. Then the camera zooms in on Graham asking me the same question every
year.
‘
What’s it like to live in a bubble?
’
‘It’s great, I don’t really notice.’
‘
What’s it like to live in a bubble?
’
‘It’s okay, I get to be on TV.’
‘
What’s it like to live in a bubble?
’
‘It’s horrible. I want to escape.’
More images flash in front of me, and I feel my heart rate pick up. I glance at the monitor, and that makes it pick up even more.
Graham smiling, Graham still smiling, Graham talking into the camera –
‘
And that’s the extraordinary story of an extraordinary boy. A real-life superhero
.’
Graham presses the eject button. David is pointing the camera right at me. The lens whirrs as it zooms in. I look at the ground, then out the window. I’m supposed to speak now but my
throat closes up from the pressure and I don’t know what to say. What can I say when my life highlights only last ten minutes? For other kids in the hospital it must take ages – their
parents film them riding round the park, playing on swings, sliding on zip-wires, jumping on trampolines – and that’s probably just one day. They’ve got loads to talk about. All
I’ve got is what happens in this room and in my dreams. And no mum or dad to make the videos.
When I look up Graham gives me a smile that I think means ‘it’s okay’.
‘It must be difficult,’ he says. ‘Don’t think I’m ever standing here thinking it’s easy.’ Graham clears his throat. ‘So,’ he says.
‘Let’s talk about what’s happened in the last year.’
I shrug. ‘Not much.’
‘We’ll pack up then, shall we David?’
New-cameraman-David grins behind the camera then it goes quiet again.
‘Tell you what, I’ll tell you what I’ve been doing, and we’ll see how we go from there. Okay?’ I nod. I know the programme is supposed to be about me, but I like to
hear what’s happened in Graham’s life. Every year he learns more about me and I learn more about him.
‘Had Libby gone to university, last time I saw you?’
‘No, she was taking her A-levels.’
Graham smiles. ‘Of course, well she’s at Exeter now.’
I lean back on my pillow and Graham tells me about what his family have been up to. He has a wife and two children, they live in a three-storey house in Manchester but they’re thinking of
moving because the children have grown up and they don’t have any space to park their cars. He’s got a daughter called Libby who’s really good at English and a son called George
who’s studying Biology at university. He shows me pictures of them all. I tell him they’ve grown and that his wife looks pretty and he says he’ll tell her, then he shows me a
picture of them all walking their dog on the beach. I take it and hold it really close to my face, like I’m there too. Graham is stood with his arms around his wife and Libby’s
shoulders. George has got his arm ready to throw a ball and the dog is getting ready to chase.
‘Do you
I want to say more, but I can’t. I only get to meet Graham once a year, so it’s like I have to get to know him all over again.
‘Tell you what, why don’t we just watch the DVD to remind us where we are. He gets up, takes a DVD out of the silver box and puts it in the player. New-cameraman-David moves towards
the window.
‘Here we go.’ Graham hands me the remote and sits down beside me.
I press play.
The Bubble Boy. Highlights.
We watch a montage of my life: me wearing a Spider-Man suit and sitting with Mum and Dad on my birthday. Mum and Dad talking to Graham, Mum smiling, Dad looking worried, me pretending to ride a
quad bike around my bed. Me sat in bed with a bald head from chemo when I had the bone-marrow transplant. Beth crying, me crying, me and Beth hugging each other after the transplant didn’t
work. A picture of Mum and Dad on the front of a newspaper. Doctors looking at my charts, Graham talking to the doctors. Then the camera zooms in on Graham asking me the same question every
year.
‘
What’s it like to live in a bubble?
’
‘It’s great, I don’t really notice.’
‘
What’s it like to live in a bubble?
’
‘It’s okay, I get to be on TV.’
‘
What’s it like to live in a bubble?
’
‘It’s horrible. I want to escape.’
More images flash in front of me, and I feel my heart rate pick up. I glance at the monitor, and that makes it pick up even more.
Graham smiling, Graham still smiling, Graham talking into the camera –
‘
And that’s the extraordinary story of an extraordinary boy. A real-life superhero
.’
Graham presses the eject button. David is pointing the camera right at me. The lens whirrs as it zooms in. I look at the ground, then out the window. I’m supposed to speak now but my
throat closes up from the pressure and I don’t know what to say. What can I say when my life highlights only last ten minutes? For other kids in the hospital it must take ages – their
parents film them riding round the park, playing on swings, sliding on zip-wires, jumping on trampolines – and that’s probably just one day. They’ve got loads to talk about. All
I’ve got is what happens in this room and in my dreams. And no mum or dad to make the videos.
When I look up Graham gives me a smile that I think means ‘it’s okay’.
‘It must be difficult,’ he says. ‘Don’t think I’m ever standing here thinking it’s easy.’ Graham clears his throat. ‘So,’ he says.
‘Let’s talk about what’s happened in the last year.’
I shrug. ‘Not much.’
‘We’ll pack up then, shall we David?’
New-cameraman-David grins behind the camera then it goes quiet again.
‘Tell you what, I’ll tell you what I’ve been doing, and we’ll see how we go from there. Okay?’ I nod. I know the programme is supposed to be about me, but I like to
hear what’s happened in Graham’s life. Every year he learns more about me and I learn more about him.
‘Had Libby gone to university, last time I saw you?’
‘No, she was taking her A-levels.’
Graham smiles. ‘Of course, well she’s at Exeter now.’
I lean back on my pillow and Graham tells me about what his family have been up to. He has a wife and two children, they live in a three-storey house in Manchester but they’re thinking of
moving because the children have grown up and they don’t have any space to park their cars. He’s got a daughter called Libby who’s really good at English and a son called George
who’s studying Biology at university. He shows me pictures of them all. I tell him they’ve grown and that his wife looks pretty and he says he’ll tell her, then he shows me a
picture of them all walking their dog on the beach. I take it and hold it really close to my face, like I’m there too. Graham is stood with his arms around his wife and Libby’s
shoulders. George has got his arm ready to throw a ball and the dog is getting ready to chase.
‘Do you
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