‘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.’
‘I’m okay, but still tired.’
‘Dr Moore said it’s best that we shoot in half-hour slots and you rest in between.’
I nod. ‘Okay.’ New-cameraman-David stands in the middle of the room and holds up a gadget that checks the light. Then he goes back to his camera and takes it off the tripod.
I sit with Graham on the sofa. I like talking to him but when the time goes past 3 o’clock, all I can think about is how empty the room will be when he and New-cameraman-David leave. I want to say something that will make them want to stay longer. I wish they would come more often, but I don’t think I do anything interesting enough to be on telly more than I already am.
At 4 o’clock, Amir comes in. He checks I’m okay, checks the monitors, looks out of the window, hands me a cup, and gives me my pills. Graham asks him how long he’s worked here, but Amir doesn’t hear him. He can be so funny and noisy when he’s with me but so quiet when he meets new people. He’s nervous and some people don’t like that. You have to wait a while for him to turn into a friend.
Amir goes into the bathroom, then turns and waves his hands behind Graham to get my attention, but I don’t understand what he wants.
He opens his mouth wide and points at the sky like he’s playing charades.
HAVE YOU SEEN ANY?
I shrug, and try to mouth: PLANES?
Amir shakes his head.
NO. A-LI-ENS!
Graham turns around.
Amir scratches his head.
‘Are you okay?’ asks Graham.
Amir nods. ‘I’m good. You good?’
‘I’m fine . . .’ says Graham. I can tell he thinks Amir is a total loony.
‘Then we all good, aren’t we Joe?’ Amir winks at me and I grin back, trying to concentrate on not laughing, in case Graham thinks I’m laughing at him.
‘Right,’ says Graham. ‘Where were we?’
Amir points at the window. KEEP WATCHING, he mouths dramatically.
I’m still smiling as he walks out of the door.
Graham glances up at me.
‘He’s . . .’
‘Weird?’
‘Yes.’
‘He is, but he’s brilliant at Countdown.’
Graham laughs. ‘Perfect, Joe,’ he says. ‘We’re going to wrap it up there.’
‘Already?’
‘Afraid so.’
New-cameraman-David takes the tripod down and puts the camera in the silver case, then holds out his hand.
‘It’s been nice to meet you, Joe.’
‘You too.’ I shake his hand and then follow him and Graham towards the door.
‘When will I be on TV?’ I ask.
‘Next Monday,’ he says. ‘Oh, and don’t forget to answer your fan mail.’
‘I never do. I answer every one of them. It’s them that go away.’
Graham looks at me like he wants to hug me. I get this look a lot. ‘Don’t worry,’ he says. ‘Maybe you’ll get some good friends this time.’
‘Hope so.’
Then he does hug me. Not too tight but just enough for me to feel his hands in the middle of my back. Then he’s gone.
Sometimes he leaves me with a present. He brought me a microphone once, another time he brought me a copy of a script from Doctor Who, signed by David Tennant. He didn’t leave anything this time. I think maybe he forgot, that when he gets in his car he’ll find something in his pocket and he’ll run back in and leave it in reception. I wish I saw him more often or at least got a text from him once a week or maybe a month. But he doesn’t send me texts. He just goes out of the door and I don’t hear from him again for another year.
The diggers are getting closer. I can feel the drills vibrating through my hand on the window pane. And I can hear them too, a distant buzz. I’ve been watching them since Graham left – two yellow generators, eight men with fluorescent jackets wearing white hats – two of them talking, two of them drilling, two of them in diggers, scooping up the road and filling yellow trucks with rubble. Another two men stand by the traffic lights, talking, one of them pressing buttons, changing the lights next to a van with red letters on the side: If y
ou smell gas, ring this number – 0845 500200 – Any time.
The door clicks open. Amir walks in.
‘You see they start laying the landing strip,’ he says.
I scrunch my face in confusion.
‘The workmen. They digging up the road to lay huge magnets to create a magnetic field – electric charges and elementary particles with quantum properties.’
‘I think they’re just laying a new pipe for the gas,’ I say. ‘It says London Gas on the vans.’
Amir taps the side of his head. ‘That’s what they want you to think. They not stupid. They get humans to do all the work for them.’
I smile in what I hope is a convincing way. It’s not true, I’ve seen the road being dug up, but I’ve not seen any massive magnets.
Amir turns away from the window and yawns. ‘Sorry, I was up all night,’ he says.
‘Looking for aliens?’
‘No. Just couldn’t sleep.’
His eyes are dark but there’s a watery sparkle that makes me thinks he was up all night watching the stars. He sits down beside me.
‘How the documentary go?’
‘It was good,’ I say. ‘But I’m a bit tired.’
‘Yes,’ he says. ‘It must be tiring being on TV. I wish I on TV. I could be in Bollywood.’
‘Hollywood?’
‘No, Bollywood. Indian films. You no see them. Like Slumdog Millionaire, but much better. They very different, lots more singing and dancing. I could have been in that film.’
‘Really?’
‘Of course. I do many things. I not always a nurse. When I was in India I used to be a train dispatcher.’
‘What’s that?’
‘I dispatched trains.’
‘You got rid of trains? Why?’
‘No, I no get rid of them. I dispatch them. I check the doors and blow a whistle. Then they leave.’
‘Oh.’ Amir is talking so quickly that he’s confusing me. He doesn’t seem to mind. He just keeps talking.
‘I prefer my job before,’ he says. ‘I used to be graphic designer for newspaper in Delhi. It was good job, but rubbish money. That’s why I come to England . . . to get a better job for me and my family. But we no talk about the past. We talk about the future.’
The Bubble Boy Page 6
