The Bubble Boy (8 page)

‘So how are you, Joe?’

My head begins to throb. I tilt my head down and hope that it will clear. Graham gently squeezes my shoulder.

‘Hey,’ he says. ‘Where’s the lively lad I met last year, eh?’

‘Refuelling his jets and webs.’ I point at my Spider-Man t-shirt.

Graham laughs. ‘And maybe getting a bigger suit,’ he says. ‘You’ve grown.’

‘Not as big as the Incredible Hulk.’

‘No, not that big, yet.’

My head spins again. I close my eyes.

Charlotte R stands up and walks over to my side. ‘You shouldn’t be doing this if you’re not feeling right.’

‘No, I want to! I’m just a bit tired.’

‘You’re like my kids when they were your age,’ Graham says. ‘Too tired to get up in the mornings and even when they did, they spent all day in their pyjamas on their
phones.’

I grin. ‘I do that all the time.’

Graham laughs. ‘Yes, I bet you do. You’re all the same. Look,’ he says to Charlotte R. ‘I think Joe’s old enough to make up his own mind.’

Charlotte R bites on her lip. I don’t want to get her into trouble; she’s nice.

‘I’ll tell you if I feel bad. I’ve been looking forward to this for ages. I can’t stop just because I’m tired.’

‘Do you promise you’ll say?’

‘Yes.’

Charlotte nods at me, then at Graham.

‘Okay,’ she says. ‘Let’s see how it goes.’ She walks back to her chair.

Graham grins at me. ‘Good lad.’ He rubs my head again and I don’t know if it’s because he makes me happy or because we’re getting ready to film, but suddenly I feel
better. Graham sees me looking at the camera guy.

‘Ah, introductions, new cameraman – David, this is Joe, Joe this is David.’ New-cameraman-David takes his eye away from the viewfinder and waves. I wave back.
New-cameraman-David looks back through the lens and pans around the room.

‘See they’ve given you a sofa, Joe,’ Graham says, ‘. . . and a new TV.’

‘I’m getting Sky TV, too.’

‘What? We can’t have you watching the competition.’ Graham’s face goes straight then cracks into a smile again. He looks different to the last time I saw him. He’s
still as friendly as I remember, but his hair is much greyer than last year and his face is brown like he’s just come back from holiday. He makes me feel like my white face is practically
see-through! He looks at me for a long time like he’s waiting for me to talk but I can’t think of anything to say. Graham nods at my Theo Walcott poster.

‘So, you won a trophy at last.’

‘Yes. But he didn’t play. He was injured.’

‘He’s 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 still think about going to the beach a lot?’ asks Graham.

I nod. ‘Yes. When I see pictures like this, or adverts for holidays on TV. I’d like to jump over the waves.’

‘Or surf, even.’

‘Yes, I’d like to surf, but I don’t even know if I could swim.’

I look at the picture again: Graham’s family, the other children playing behind them, the shiny sand, the waves, frozen in time. New-cameraman-David leans against the wall by the monitors
and points the camera over Graham’s shoulder.

Graham leans closer to me. ‘Tell me what you’re thinking, Joe.’

My stomach goes tight. Graham glances at the monitors – 95. My heart rate has increased 5 beats.

‘Don’t worry. It just does that. Greg says it goes nuts when I dream.’

Graham chuckles, glances at the camera, then back at me. ‘So what were you thinking?’

‘I was thinking about what it’s like to walk on sand.’

Graham puffs out his cheeks. ‘Wow,’ he says. ‘That’s a hard one; it’s hard to describe. Sometimes it’s as hard as this floor and your feet stay firm,
sometimes it’s soft and your feet sink in.’

‘But what does it
feel
like?’

Graham turns his head. His eyes search the room. ‘I don’t know, Joe. Maybe it feels like walking on your bed.’

‘But with water filling my footprints.’

‘Yeah, something like that.’

I look back at the picture. ‘I like talking about your family,’ I say.

‘Why?’

‘I like seeing where you’ve been.’

‘Even though you can’t go there?’

‘Yes. I’m not the only one who hasn’t been to the beach. Henry hasn’t been either, but lots of kids that don’t live in bubbles don’t get to see the world,
either.’

‘True,’ Graham nods. ‘True . . . How is Henry?’

‘He’s okay. We’re hoping we might get to see each other soon. NASA have made him a spacesuit so he can go outside.’

‘That’s great.’

‘Not really. He only went to the end of the corridor. But he thinks he’s going further tomorrow, and then next month he’s going to the mall.’

Graham smiles. ‘Brilliant’ he says. ‘Tell him good luck from me. What about you?’

‘I can’t get a suit; I wrote to the prime minister to see if he could get me one.’

‘What did he say?’

‘He sent me a letter. He said he’d seen me on TV, he couldn’t promise anything but he’d talk to some scientists.’

‘Great!’

‘I know. But that was three months ago.’

I reach over and get the letter from my drawer. Graham reads it and shows it to the camera.

‘I sent one to the European Space Agency too, but they’ve not replied. Henry told me to write to Stark Industries. It’s where all the Avengers work. Stark’s have loads of
money, more than the NHS, more than NASA.’

‘Yes, they probably have.’ Graham hands me back my letter. ‘But what would you do . . . if you could go outside the hospital?’

‘Even if they had the money I don’t think the doctors would let me go outside.’

‘But if they did.’

‘I’d go and live with Beth.’

‘And where does she live?’

‘Islington, but she’s got to go away soon. It’s her placement year.’

‘Where’s she going?’

‘I don’t know. But I hope it’s not far.’

Graham waits for me to say something else but my throat is aching and I can feel my eyes watering. I look down at my bed.

Graham taps his hand on my leg.

‘Joe,’ he says. Would you rather talk about something else?’

I swallow, shake my head and stop the tears from coming out. ‘No, it’s okay. I know she has to go. She wants to be a doctor. I want her to be one too.’

‘She’ll be great,’ says Graham. ‘And what about you? What would you like to do for work?’

I look down at my hands. He always asks me that but he knows that kids with SCID die before they’re old enough to get a job, if they don’t get fixed.

Graham leans forward.

‘Joe?’

‘You always ask me that.’

‘I know, it’s just this year the answer might be different. People change their minds as they get older.’

‘I won’t.’

‘Still want to be superhero?’

‘I am a superhero. That’s what everyone says.’

New-cameraman-David makes a circle with his index finger and thumb and the red light goes out.

‘That’s brilliant, Joe.’

‘Have we finished already?’

‘No, but you need to take a break,’ Charlotte R says as she walks over.

‘But I’m okay!’

David sets the camera up on the tripod.

‘It’s all right,’ says Graham. ‘We’ll go to lunch and leave the camera running. You know what to do. Just forget it’s there. Like it’s a fly on the
wall.’

‘There has never been a fly in here,’ I say. ‘There’s never even been an ant.’

‘Ha! It’s funny,’ he says, ‘but I hadn’t thought of that.’

‘But I saw a wasp once!’

‘Did you?’

‘Over here.’ I walk over to the window. ‘It was down there, on the other side of the window.’ I point to the corner where the frame meets the wall. ‘It flew around
all day. I couldn’t hear it but I could feel the buzz through the glass with my finger. It just kept buzzing around like it was looking for a hole. I thought it would get in. I saw it on TV:
wasps can eat their way through stone and concrete. Greg told me not to worry, but I did, I dreamt the room was full of wasps. They were buzzing all around me. They were in my hair, in my ears, up
my nose, in my mouth and they were flying into the air-con, blocking the vents, jamming the blades. They were everywhere, in the plug sockets, in the machines. I thought –’

Charlotte R puts her hand on my shoulder. ‘Hey Joe, it’s okay, they’re not here now.’

I step away from the window. My heart is thudding and my arms are sweating. It was scary when the wasp nearly came in. Charlotte guides me back to my bed. Graham stands beside me.

‘Take it easy, Joe. Just relax and we’ll be back soon.’ He walks towards the door with New-cameraman-David.

Charlotte rubs my arm. ‘You just stay still and I’ll check Dr Moore is on his way.’

I nod and they leave me alone with the fly on the wall. I’m not sure what to do. I can’t just stay still. People will want me to do something. It’ll be boring if all they see
is me lying on my bed. I look at my laptop, my TV, but that isn’t actually doing anything, it’s me just staying still, looking at screens. But what else can I do? I don’t do
anything else all day. Once, the doctors gave me an exercise bike with a DVD that I had to watch at the same time. They said it would be good for my blood supply and it would help my heart and my
lungs. I pedalled for an hour. The wheels spun around but I didn’t move an inch, and it felt like I was a hamster in a ball. I didn’t go on it again. It’s boring watching a
simulator on a DVD when everyone else gets to cycle by fields. The running machine was worse. They put electrodes on my chest and wired me to the monitors. I only ran for two minutes. My heart rate
went up to 142 and then I stopped. The doctors thought it was because I was tired but it was because I was scared to see my heart rate so high.

I look around the room. The red light is still flashing on the camera. I lie back and go to sleep. I have a dream, but I don’t remember what it is about, only that it has wasps in it.

Rain is running down the window when I wake up. Graham and New-cameraman-David are whispering in the corner. They both turn and look at me when I sit up.

‘Sorry,’ I say. ‘Don’t think I did anything interesting.’

‘Don’t worry about it,’ Graham says. ‘You were brilliant. How are you feeling? Charlotte told me Dr Moore came by and said you’re doing fine.’