‘So you do know?’
‘No,’ she says. ‘But I think that’s what Paul told me happens with guitars.’ She bites her lip and looks back at the ground.
‘It’s okay. You can talk about people outside.’
She smiles and stands up.
‘But you’re not going now, though?’ I feel a bit panicky.
‘No, you idiot. Budge up.’ She sits on my bed and puts her arm around me.
I pick up the remote, turn on the TV and flick through the channels. I can feel Beth’s body move as she breathes.
‘You can bring him to visit me if you want.’
‘Maybe I will,’ she says, putting her hand on top of my head.
I flick to another channel. I don’t think she will bring him, though. Jon was the last one to come here. He’d been going out with Beth for two months. I liked him and I think he liked me, but two weeks after he’d visited, Beth told me he had gone. She said they had been arguing, that she couldn’t finish her assignments because of it. But I wonder if it’s because she spends all her time visiting me.
My laptop beeps again.
‘He’s getting impatient.’ She squeezes me. ‘Go on, talk to him, I don’t mind.’
I reach over.
Hey Joe. What are you doing?
20:01
Stuck in a bubble. You?
20:01
Stuck in a bubble.
20:01
Beth laughs, then lies back against the pillow.
Go to screen?
20:02
I go to screen but all I can see is blurry pink and I can hear the echo of Henry laughing. He pulls his finger away from the lens and leaves it stuck up at me. I do the same back. I turn my laptop towards Beth.
‘Hello, Henry.’ She waves.
‘Hello, Beth.’ Henry waves back.
Henry’s room is bigger than mine. He’s got a sofa and a TV area, and another table by a window where he can sit and eat. He says it’s like a penthouse and that if he lives long enough he might take over the whole of the first floor and have a 360-degree view of Philadelphia, then he’ll be able to see the Comcast Center, Liberty Place and City Hall and on clear days he should be able to see the Philadelphia Eagles play.
Henry puts his face close up to the screen. ‘So what are you going to do, just stare at me?’
I smile, switch to text so I can message him and talk to Beth at the same time. It’s great that he’s my friend, even if it is like he lives inside a computer.
‘Joe . . . Joe!’
I feel a hand on my shoulder.
‘Joe, you’ve been dreaming.’
I open my eyes. I’m sitting at the window with Greg by my side. My pyjamas are wet and stuck to my skin. I wrap my arms around my body and try to stop myself from shaking.
Greg puts his hand on my shoulder.
‘You okay, mate?’
I nod. He takes hold of my left arm, leads me across the room and sits beside me on the edge of my bed. I shiver. He hands me a t-shirt. I glance at the monitors.
Heart rate: 98
Body temp.: 37.5C
‘It’s okay,’ Greg says, ‘they’re under control.’
I feel my heart thudding through my ribs. It’s still pumping like mad; it must have been over a hundred when I was dreaming.
‘Want to tell me about it?’
I put my t-shirt on and then stare ahead. It takes a while to come back to the real world after I’ve had a dream. So many things can happen when I close my eyes. I can go to so many places. Last night I was running with geckos in the desert; the night before I was catching tuna fish in the sea; the night before that I was running away from an erupting volcano.
Greg leans forward. ‘You don’t have to tell me,’ he says. ‘Just sometimes it’s helped, hasn’t it?’
I stare out into the darkness and shrug. My dreams can be scary – but they’re exciting too. I like being in those places. It’s the waking up I don’t like.
Greg taps my knee.
‘Come on, mate,’ he says. ‘Maybe try and get some sleep.’
I lay back on my bed. Greg sits down in the chair next to me. I look up at the ceiling, take a deep breath, and feel my heart thud in my chest. I try to sleep but my head is too busy thinking. I can’t stop my legs moving and my eyelids won’t stop flickering no matter how hard I try to keep them still. It’s a side effect of the new drug, like it’s fighting with all the other drugs in my body to keep all the infections away.
I turn my head. Greg’s sat in the dark looking at me with his chin rested on his hand. He smiles. I roll over on my side.
‘Tell me about the other kids. Tell me what they’ve all been doing today.’
Greg laughs. ‘I told you before, mate. They do the same as you . . . go on their laptops and watch TV all day.’
‘But they must do other things, too.’
Greg tells me about all the other patients he looks after, the ones in the other wards that stay in here long term. There are six of us at the moment. I’m the only one with Severe Combined Immunodeficiency. It takes a long time to say it, so the doctors call it SCID for short. It’s when kids are born with no immune system to fight off disease. It can make them really ill or they can even die. Most of the time the doctors find a cure but until they do the kids have to stay in a bubble like me. I’ve got super SCID. I’m the only one who has got it in the country. It sounds exciting but it’s not. It just means the doctors are still looking for a cure and I might have to stay in a bubble longer than everyone else. The other kids Greg looks after have cancer or degenerative diseases. None of them have been here as long as me – they either die or get cured and are allowed to go back home. Greg calls us all ‘mate’, he never uses our real names. He only really tells me how old they are and the diseases that they’ve got. There’s a kid on ward six who everyone thought was going to die. He’s been here for two months and he’s had two blood transfusions and a bone marrow transplant. Greg says he can’t be certain but he thinks the kid might be able to go home soon. Then he tells me about a kid on ward eight who’s really funny; after his hair fell out he got some paint from the day room and painted his head red and now he runs around the ward pretending he’s a snooker ball.
Greg looks at me like he’s waiting for me to say something, but all I can think of is the kid who’s had the blood transfusions and how many I’ve had – so many I lose count. I’m glad they found out what was wrong with him earlier than they found out what was wrong with me. They think he’s getting better now, that he’ll be able to go home and see his family soon and I wonder what he will feel like packing his bags up here and then unpacking them when he reaches his bedroom. I wonder if he will be able to sleep after all those weeks of listening to the beeps of the monitors. I wonder if I ever got to leave whether I would miss the sound, because it’s been with me nearly all of my life. Beth told me that Mum thought I would only be in here for a day or two when she bought me in. I was only two months old. She thought I had a cold at first, that maybe I caught it off Beth. But then my nose wouldn’t stop running and I was shaking but no matter how many blankets she wrapped me in they couldn’t seem to get me warm.
I roll over onto my back.
Thunder rumbles outside my window. Greg gets up, walks across the room and peers out through the blinds.
Another rumble, a flash of lighting that lights Greg’s face up white.
‘Can I look?’
‘It’s late, mate.’
‘Please!’
Greg shakes his head, slowly. ‘I don’t know . . .’
I keep looking at him, hoping that he will change his mind.
‘Come on then, I guess you wouldn’t be able to get to sleep anyway.’
He pulls back the blinds and I get up out of bed and stand beside him.
Outside, the orange streetlights and green traffic lights are sparkling, and the roads look like they’re steaming as cars drive through the rain.
On the far side of th
e street people run along the pavement, some with bags or folders over their heads. They dart through the traffic as a flash of lightning turns the buildings black and I count to ten before I hear another rumble of thunder.
I shake my head.
‘What’s wrong?’
The traffic lights have now turned red and the car brake lights are blurred. Some people are still running; some are stood sheltering under the buildings trying to get their breath.
‘I wouldn’t run if I was out there.’
‘Then you’d get bloody wet, mate.’
‘I wouldn’t mind.’
Greg laughs. ‘So what would you do?’
I shrug because what I’m thinking seems stupid. But it’s just rain – people see it all the time; it doesn’t hurt them. If I was out there I’d stand still and let it fall on my head, let it drip off my hair, let it soak through my clothes onto my skin. I’d stay up all night and in the morning I’d walk through the streets until I found a park with trees and a lake and I’d lie down on the grass and let my clothes dry in the sun.
No one has ever told me what the rain and sun is like. They try, but they can’t describe them in a way that I can feel. I asked Henry if he thinks about it too, but he said it doesn’t rain much in Philadelphia and even if it did, when he does get to go outside he won’t be able to feel it through his suit.
Greg puts his hand on my shoulder.
‘Come on, mate,’ he says. ‘You need to sleep.’
I turn away from the window and get back into bed. Greg pulls down the blinds and sits back in the chair. I hear the rain on the window and wonder if the kids in the other wards have got up and watched the storm too. I imagine us all stood in a row at our windows in silence, still, with the dull yellow lights from the corridors shining behind us as the rain falls down the glass and I wish we could talk to each other and point because outside the traffic lights have turned green and all the cars and people are moving in slow motion without making a sound.
I turn over on my side. I want to tell Greg what I’ve been thinking, but it’s too late because the chair is empty and all I can see is his silhouette as he leaves.
11 years, 2 months and 23 days
I’m sitting on my bed trying to read The Boy in the Striped Pyjamas. George, my English teacher, told me it’s a good book; it’s like studying English and History at the same time. But it’s hard to concentrate on anything when Amir is standing at the window watching the planes. He’s been there for half an hour now, watching them come in to land, watching them leave, turning his head from side to side, like a cat watching birds.
I reach over for my laptop, gently lift the lid. Henry has messaged me during the night.
Hi Joe
04:10
Joe?
04:11
You asleep?
04:11
You must be
04:12
Ah crap.
04:12
Are you really?
04:13
Catch you tomorrow
04:13
Joe?
05:19
Just want to chat. Can’t sleep, my head hurts and my legs are aching, can’t keep them still. Can’t concentrate, can’t play Tekken, can’t read, can’t watch TV. So I’d thought I’d talk to you. But you’re not there, are you?
05:20
Crap. Catch you soon.
05:21
Watching Tomb Raider now.
06:22
I wish I’d been awake to talk to him. I wish we could change the clocks so we were on the same time.
Henry, sorry I didn’t reply, I was sleeping.
10:23
A shadow falls across the bed. I look up. Amir stands beside me holding a little cup of pills in one hand and a big cup in the other.
‘You sleep late.’ His mask puffs out as he speaks.
‘I had a dream,’ I say. ‘Then the storm kept me awake.’
He holds his hand up to his mask. His eyes water as he yawns.
‘Did it keep you awake, too?’ I ask.
‘Yes, it was a bad one.’ He turns towards the window. ‘But at least it didn’t stop the planes.’
I wonder if he’s joking, but his eyes are dark and not smiling any more. I think of telling him that the planes always stop taking off late at night, but he should know that, especially when he spends so much time looking at the sky.
He takes my cups, puts them down on the table. I slide my feet over onto the floor and walk into my bathroom and listen as he puts the chair next to the door. I get in the shower, wash, then check my body for bruises – the two on my legs have nearly gone and the one on my ribs has started to turn yellow. I smile.
‘No new bruises!’ I shout.
Amir doesn’t answer.
I look through the gap in the door to check where he is. I can see the chair but not the back of his head. He’s supposed to stay with me; he’s supposed to wait by the door. I lean forward, see the monitors, see the window, see Amir’s hand on the sill. Why is he so quiet? Why does he keep looking at the sky?
I’m watching TV when the doctors arrive to take my blood later in the morning. They check my temperature – 37.3C. Dr Moore pushes his lips together as he looks at my chart.
‘Looks like you had an exciting night, young man.’
‘I had a dream.’
‘Who were you this time?’
‘I don’t know,’ I say. ‘Greg woke me up before I had time to change into a suit.’
The doctors both smile, then they ask me about my bruises as Dr Moore wraps a tourniquet around my leg. My leg begins to thud. I close my eyes and wait for the needle to go in.
‘Which is better,’ asks Dr Hussein. ‘Webs or jets?’
‘I’ve got both,’ I say. ‘I don’t have to choose – ouch!’
Dr Moore tuts.
‘Sorry, Joe, I can’t find either of them here.’
I try to laugh, but all I can do is squeeze my eyes tighter as he searches for another vein. Dr Hussein looks at my picture of upside-down Spidey on the wall.
‘He’s my favourite,’ he says.
‘Do you read the comics?’
‘No, but I’ve seen all the films.’
I tell him the comics are better because of the drawings and you can use your own imagination.
‘I agree,’ he says. ‘I wish I had the time.’ Then he goes quiet like he’s said something wrong. But I don’t mind. I know it’s true. I do have lots of time in the day. I just don’t know how many days I’ve got left. But that’s the same for everybody.
Dr Moore taps my arm.
‘All done,’ he says. He hands the sample to Dr Hussein who puts the little bottle in his jacket pocket. Then Dr Moore puts his hand on my head.
‘How’s your throat?’
‘It’s okay.’
‘Not sore?’
‘No. It’s a bit dry, but I’ll drink lots of water.’
‘Good lad,’ he says.
Then they leave and I’m alone again.
I send another message to Henry – if he’s up we could play FIFA, but he doesn’t reply and I think that maybe it’s his big day tomorrow. Walking around the car park will be tiring, so maybe his nurses gave him something to help him sleep.
Amir brings me two Warfarin tablets at lunchtime. They stop my blood from clotting because some of the other drugs I take make my blood too thick and that can cause heart attacks. Amir hands me a glass of water and I swallow the pills, then he helps me unseal my food and walks around the room, checking the monitors, checking the breathing machine. I turn on the TV to fill the silence, but it’s hard to concentrate when a man with a mask is staring out of your window. I watch a programme about a man drilling for water in the middle of the desert until Amir goes away and then Beth comes to see me.
She sits down beside me and I tell her about my dream on the bridge, how we were stuck in the middle of it with all the cars crashing around us. She says it sounded crazy and asks me if that’s why
I’m feeling so tired. I tell her it was partly that, and partly because of the storm. I tell her about Amir, that he’s still not talking; she wonders if it’s because he’s shy, or just he’s not good at talking to strangers.
After she’s left, Henry messages me. He’d just been watching The Expendables. We play Tekken until I get tired. Then Amir comes in and tidies my room while I get changed for bed. It was nice to see Beth and speak to Henry, but apart from that it hasn’t been a very fun day.
When I come back from the bathroom, Amir’s by the window, watching the sky again. I think about what Beth said about him being shy. Just because I like listening to people doesn’t mean that he has to like talking, I guess. I start to walk towards my bed. He watches me for a second, then holds out his arm.
‘Come here,’ he says.
I stop walking.
‘What is it?’
He smiles. ‘Come and look.’
I walk over to the window and stand beside him. Outside the sky is turning red and the street is full of dark shadows. Amir’s looking towards the Lucozade building, where the planes fly in and out with lights flashing under their wings. He turns and looks at me, opens his eyes wide.
‘Do you believe in aliens?’
‘What?’ Uh-oh. Amir is a bit weird.
‘Do you believe in aliens?’
‘I . . . I don’t know.’
Amir’s eyes are open wide and they seem to be getting bigger the longer I look at them.
‘I do,’ he says. ‘Farmers are too busy to draw crop circles.’
I bite my lip. After three days of not saying anything he’s talking to me about aliens!
‘I’m not sure,’ I say.
Amir stands up straight, scratches his head. ‘But I thought you did,’ he says. ‘I’ve seen you watching the planes outside and the ones on your television. That Malaysian one on the news.’
The Bubble Boy Page 3
