We Are All Made of Stars (4 page)

‘You still awake?' Stella checks her watch, as if I might not know that it is nearly 3 a.m. Why she's concerned, I don't know, as her sole purpose for being here is to wake me up.

‘Looks like it,' I say.

‘I just need to know …'

‘Yes, I know, I know the drill.' I tuck a knotted strand of hair behind my ear and let Stella take my temperature, my guitar cradled in my lap, as it often is. There's half a song in my head, and it won't go away, so I'm trying to write it – exorcise it, that would be a better term. It's a bloody stupid song, about as edgy as a kitten, about love and rainbows and all sorts of bollocks – not at all the kind of song I want to write, which is about … Oh, I don't know, something profound. ‘You need to know my temp, my oxygen saturation, my pulse rate, my blood pressure, blah, blah, blah. And then in another couple of hours you are going to watch as I take my hypertonic saline and then cough up the contents of my lungs in my ritual humiliation. You own me, basically. I'm your bitch.'

She raises an eyebrow and almost smiles.

‘You might find it boring, but these are the ticks and measures that are going to get you out of here quicker,' she assures me, in this careful, quiet way that she has, gentle and soft, as if someone has found her volume control and turned it right down.

‘I think I'm ready to get out now,' I say. ‘I'm not dying any more, or at least, I'm not dying very quickly. It feels wrong to be here, taking up a room that someone else needs more than me, and I've got things to do.'

Before the weird kind of limbo that is Marie Francis, there were several weeks in hospital, and a lot of drugs and pain and fear. My fear, my parents' fear, my friends' fear, even Ben, who'd come to see me and tell me funny stories about the latest customers in his shop, but I could tell even he was afraid that this was it, because he wasn't nearly as annoying as he usually is.

Mum cried quite a lot and Dad brought me things: magazines that I would never read, junk food that I didn't want, soft toys holding stuffed love hearts proclaiming a series of increasingly inappropriate messages, not to mention the fact that they were soft toys and I am a grown woman, even if I am one who can sometimes wear a bunny-rabbit onesie all day. The last one said ‘You Are My Sweet Heart' – an on-sale remnant of Valentine's Day, I presume. I appreciated the sentiment, but still, I tucked the bear right at the back of my growing pile of plush bodies, underneath the blue rabbit that assured me: ‘It's a boy!'

Finally I was transferred to the Marie Francis Hospice and Rehabilitation Centre for the final part of my recuperation before they will let me go home. I should have been in the specialist CF unit, but my local hospital had seen a ream of cutbacks that meant cutting two beds, and the other four were full. So, not well enough to go home, and the next CF specialist bed half a country away, they found me a bed here, close to my parents, for my final phase of close-care recuperation. I've ended up here, but at least I am not
ending
up here. The drugs worked, my body fought back. I am on the mend, or as mended as I will ever be, considering that I was born faulty.

I mean, every breath hurts. It's still a gargantuan effort to suck air and push it out again – a sort of crazy catch-22 where breathing exhausts me so much that I only breathe harder, desperate for more air. But I'm past the worst: the part where my lungs each had less capacity than a can of coke. And, although acid still swirls up my throat and into my mouth from my inefficient gut, and it's hard to pretend it's not me giving off noxious gasses when there is no one else around to blame it on, I feel better, a lot better.

I said no thank you, Death, I'm not ready and I am still alive. And bored out of my mind.

Stella glances at the notebooks open on my bed, and I hope she can't read my sappy lyrics upside down; if she can, she'd probably change her stance on euthanasia.

‘You should try to get some sleep. It's late,' she says. It's like her mantra – she says it almost every time she sees me, even though she looks like she never sleeps: she is pale and wraith-like, like what she needs most in the world is a good sunbed.

‘Is it?' I glance out of the window, but only the reflection of my room bounces back at me out of the dark. ‘It's hard to tell in here. It's like time stands still, or the seconds move very, very … slow-ly.' Stella watches as I stretch the last word out for a long, long time, benignly tolerant of my show of immaturity – because I am, after all, only twenty-one.

‘If you need stuff to do, you could join in with any of the activities in the daytime.' Stella completes her notes carefully. ‘Or take a look in the library. We may rely on donated books, but we get lots and we always seem to have the latest bestsellers … There's some good stuff in there, I've heard.'

‘Yes, I had a look,' I say, thinking it would be churlish to mention that I'd already read anything worth reading, and everything else was twaddle, because that would make me seem like a snob. Stella probably wouldn't guess the large percentage of the limited hours of my life that I have devoted so far to reading; she couldn't know that while other girls my age are partying all night in Ibiza, engaging in wild no-strings sex with virtual strangers, training to be track stars or packing for Bali for some kind of sponsored adventure, I am sitting at home, living in another world that exists only between the pages of a book and on the internet – the only place where I am really allowed to talk to other CF people, as we can't meet in person. You put two CF people together and there's a chance that one of the bugs they carry around all day might just kill you off, and vice versa, so we stay apart from each other.

There are chat rooms and blogs, and support groups, but I've started to stay away from them, ever since this girl whose blog I loved to read started to blog about planning her marriage at an insanely young age, to a man she barely knew. Although no one mentioned that, of course, because, you know, she probably wouldn't have time to find out they were deeply incompatible. I'd check for a new post every night; I loved it. I loved her endless bubbles of enthusiasm, and how getting married made her just so happy. I loved how she'd made a little bridesmaid dress for her wheely oxygen tank, and how she talked about wanting to honeymoon in Australia and see Ayers Rock, like William and Kate.

I loved her endless debates on nail varnish and tiaras, and how long she could wear high heels for without needing a sit down. She talked about how her health was declining, how she'd been moved to the top of the transplant list, but that somehow even that just filled her full of hope. Because a transplant meant so many more years to be with her husband, and if they had to put the honeymoon off for a year, it didn't matter. She posted about how the wedding wasn't going to be in a church after all, or in the summer, but in a hospital chapel, in the next month, and how she was so certain that when a person was as loved as she was, and who loved life as much as she did, that fate would bring her the life-saving operation that she needed. And then, about a week before her wedding was due to take place, she stopped posting. And she never started again. And I don't need to google her name to find out what happened, or even read the hundreds of comments under her last blog post. So anyway, since then, I've started to stay away a little. One sad ending is about all I can take.

‘Anyway, I'm sure they'll check you out soon enough. We just need to be sure that you're stable and OK to go home. We don't want the infection taking hold again, and the doctors will want to see that your lung capacity has come back up to safe levels.' She pauses. ‘You were very ill, you know. Your body has been seriously weakened. We don't want all our good work to go to waste because you can't sit still long enough.'

‘I do know that,' I tell her. ‘I'm not a child, plus all this pain I'm in is a pretty good reminder.'

Stella tips her head to one side and looks at me.

‘You're very grumpy – are you always like this? Like a teenager who's been grounded?'

I want to be offended, and for a split second I am, but I find myself blurting out a guffaw instead.

‘Yes,' I say. ‘Yes, I am. Look, I'm sorry. I have a way of dealing with it all, and it's mainly this. I'm not a chirpy sort of a person. Sorry.'

This time she laughs.

‘Ha, well, then, we have that in common. But I do always try to be polite. As my mum says: good manners cost nothing.'

‘I am sorry,' and for a moment I do feel as awkward as a teen. ‘It's the word “hospice”,' I say, picking up my guitar. ‘People die in hospices.'

‘People die everywhere, and not especially here. You aren't our only recuperation patient, you know. Or even our youngest. And “hospice” is really just another word for hospital. It is about offering hospitality to the needy – just in these modern times we think it has to be about death, but it doesn't, it isn't. It's about life.'

‘You've read the fundraising material, then,' I say, and she smiles a little, perching on the edge of the armchair my room comes equipped with. It's blue, with a white cushion covered in tiny little blue flowers – homely, see? Comforting. Not at all like somewhere you are most likely about to pop your clogs.

‘You're very … cynical, aren't you?' she says, examining me with these crazy, huge, bush-baby eyes that look like they could see in the dark without any trouble at all. ‘Most people that pass through here, they are so …'

‘Much less annoying?' I make a joke of it, but I know it's true. Sometimes, trying very hard to appear that you don't care, exhausting as it is, can make you rather tiresome for all the people whose lives revolve around caring for you.

‘Happy to still be breathing,' she says.

‘I am happy,' I say. ‘I just hide it really, really well under this veneer of endless misery.'

‘That song you were playing when I came in was chirpy,' Stella observes, and she's right, damn her.

‘Yeah, I don't know how that happened,' I say with a small smile.

‘Maybe the hospice is inspiring you,' she says. ‘Our chaplain would love that; he's in a band, you know. Prog rock. He played at our last Christmas party. I mean, you'd think that it would be impossible to bring down a Christmas party. But you'd be wrong.'

‘If I was ever going to be religious, I'd want my chaplain to be in a terrible prog rock band,' I say, crossing the room and resting my forehead against the window to see past my own reflection and out into the dense night.

The hospice is in a couple of acres of garden, which slope gently down to the canal – the railway pulsating away regularly on the other side of it. An old Georgian building skirted in a modern purpose-built extension, Marie Francis is a strange little oasis of walled-in greenery in the midst of the neon and vulgarity of the place I grew up in. Outside, it feels as if the trees throw up an invisible wall between us and the rest of this dirty old Camden town.

Now, in the depths of the night, it's easy to believe that you could be in the middle of nowhere – cut loose in the dark, floating through space where the sun never rises; cut loose amongst the constellations. I wonder if Stella has to remind herself that the number 253 bus trundles down Camden Road, while behind the brick-built wall is the sanctuary of Marie Francis. Behind that green-painted wooden door set into the brick wall – the door that staff and patients' families soon learn is a better way in than the brightly lit, all-glass foyer, which closes at 5 p.m.

And then unexpectedly I feel the weight of the night, pressing down on my vertebrae, and I'm suddenly exhausted.

‘Actually, I do really want to sleep now,' I tell her. ‘I'll do my physio and then try and get some rest. You don't have to watch me, I've done it a million times before.'

She hesitates for a moment, a frown slotted between her eyebrows, assessing what would most likely happen if she forces this issue and demands to stay.

‘OK,' she says eventually. ‘I'll leave you to it. See you at five for your next lot of meds.'

There is no reasonable, rational reason why I climb into bed and lean back, sitting up against my many pillows especially brought in from home. There is no sane explanation why I know that I won't take my aspirator tonight, or beat my own rib cages until I cough up fat slimey balls of mucus. There isn't a sensible argument for why I will sit here, taking every increasing shallow breath as I fall asleep until an explosion of coughing wakes me up, as it inevitably will – tearing at my body, like a hurricane that's keen to be released from inside my chest. There is no reason, explanation or argument for why I don't do my physio, except that sometimes I just like to pretend I'm normal. I like to pretend I'm not sick.

And, yes, I know how ridiculous that makes me.

But that's the thing about living with your own mortality for as long as you can remember. It makes you a little bit crazy.

Dear son,

I worked hard for a lot of your life. It's what you did in my day. Men went out to work and came home when the kids were in bed. Your mother took control of the home; I took control of the money. We had our ups and downs, like every couple, but it seemed to work, or I thought it did. I've watched you grow up and do things I could have never dreamed of. Going off to university, starting companies from scratch. Not that I really get what it is that you do still, which I know annoys you, because you think that means I don't care or that I'm not proud of you. But that isn't true. I do care, and I am proud. I'm just from another age, and I couldn't understand even when I tried to.

You don't go to work in an office, on a cooked breakfast. You work from home, you go and pick Gracie and Stevie up from school. You cook for them, and nurse them when they are sick. And when they were babies, you changed their nappies and stayed up all night feeding them. I'll admit, it baffled me a bit.