How is Joe's life similar to or different from yours?
‘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 Nurse Greg by my side. My pyjamas are soaked in sweat 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.
My older sister Beth told me that Mum thought I would only be in here for a day or two when she brought 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.’
‘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 the 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.
‘I wouldn’t run if I was out there.’
‘Then you’d get pretty wet, mate.’
‘I wouldn’t mind.’
Greg laughs. ‘So what would you do?’
I shrug because what I’m thinking seems stupid. But 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.
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.
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.
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Click on the link below to watch a short documentary about David Vetter, the real 'Bubble Boy'.