‘And a dog doing its business over there.’
‘Oh Tom, stop it!’
He laughs. ‘Hold on.’
There’s nothing to hold on to.
‘You ready?’
‘What—’ Before I have time to ask, my stomach lurches as Paddington swoops down. I feel as if I’m about to fall out of the plane. I must scream as Tom says, ‘OK?’
No! Yes! Think so! ‘Sort of!’
I say another prayer for the engine not to cut out. I do not want to plummet to my death. I don’t want to die.
Not yet.
When I dare to look out of the window it is an incredible feeling to be this high above ground, flying amongst the clouds. The fields look like a patchwork of coloured squares, houses nestled in between. I’m doing something I never thought I’d do. I look at Tom. Right now he is my engine, but I trust him. When I’m not feeling scared, I realise I am enjoying this.
It doesn’t matter if you say you love him first; it’s not a competition.
The only problem is there’s a nagging thought in the back of my mind. How I am going to get out of this thing . . .
It’s Saturday evening and I’m talking to Tom’s mum while she cooks the supper, filling her in about our flying trip earlier. Tom is reading the papers at the kitchen table. Olivia smiles when I tell her how Tom had had to lift me out of Paddington, my legs like jelly and my heart rate soaring from all the adrenalin. ‘My son is an adrenalin junkie,’ she says, before I tell her about our plans to go to Majorca for a week’s holiday this summer. ‘I’m going to make him relax by the pool.’
‘Good luck with that.’ She laughs.
‘I’m looking forward to flopping by the pool with a beer,’ Tom argues back.
‘Let me help, let me chop something,’ I suggest, attracting a look from Tom who knows only too well I’m shy of cooking at home.
Olivia hands me some carrots to peel and grate before Tom gets up, saying he’s going to take a quick shower. As I prepare the carrots I ask her about her love of opera and to tell me more about the choir she’s joined. ‘Oh Alice, we’re terrible singers, but I always feel better afterwards, it relaxes me. You must feel the same.’ She opens the fridge. ‘So sorry,’ she says when one of my drug boxes falls on to the floor. I notice her handling it as though it were a fragile egg before placing it back inside.
‘Don’t worry, they’re just potions for my chest. Tom has been so supportive,’ I say, wanting to put her at ease about my CF. ‘I knew he was pretty special the day he visited me in hospital. Most men would run a mile.’
She closes the fridge door slowly. ‘Tom has had his own demons to fight.’
‘He told me about his car accident. It must have been a terrible time for you.’
Olivia nods. ‘He fought to stay alive. He’s brave, always has been.’ She turns to me. ‘I think you’re brave too, all your family are.’
The B-word doesn’t rile me this time.
‘I’m not, not really.’ I put the grater down. My parents never think of themselves as brave either, nor does Jake. They don’t sit comfortably with the word, although so many times they have had to be brave for me. ‘I’ve lived with CF all my life. I’m used to it, if that makes sense.’
It’s harder for people like Tom to adapt to it, or for you to see your son becoming attached to someone like me, someone who might not be around forever.
Someone who could potentially break his heart.
31
Tom
On Sunday night Tom drives Alice back to London. He feels the weekend went surprisingly well. His parents loved Alice. Who wouldn’t? But he’d be lying if he didn’t sense they were anxious too, by how close he and Alice had become. He knew Alice was aware of their concerns; she was too bright for anything to get past her. Besides, she’d already witnessed George’s reaction. He and George had patched things up; their friendship was too important to let go. George had apologised. ‘I’ve said my piece, I won’t bring it up again,’ he’d promised before adding, ‘please don’t tell Alice about this, I’d hate her to be hurt or think I don’t like her.’
The relief is that his mother didn’t pull him aside to give him a friendly warning. That wouldn’t be her style. When he thinks back to his childhood, he was left to it half the time. For all his parents knew, he and George could have been setting buildings alight, which they weren’t, but still. They had always been laissez-faire. His father couldn’t have been less hands-on if he’d tried. But they had been good parents, the kind who believed in letting their children make their own mistakes and learn from them. He believed too many people wrapped their kids in cotton wool nowadays. He is certain his independence, and his brother’s, came from them. He also knows he can go to Mum and Dad with any problem and they will support him unconditionally. He only has to remember how his father had rushed to the hospital after the car crash. He will never forget the fear in his eyes that he was going to lose his son.
Tom glances at Alice, flicking between music stations. He’s pleased that she’d experienced some of the things he’d been brought up with. He’s spent so much time in her home that it was good for them to be on his turf. He’d enjoyed showing her his old bedroom, their local beach; he’d loved sharing with her his passion of flying. He realises he loves flying so much because in this world you are constantly told to go this way or that way. When Tom is in his plane he can go whichever way he likes . . . he loves the freedom. Whether Alice truly enjoyed it or not, he isn’t so sure. He knows she was only too keen to get out of the plane but he loves her for giving it a go. He smiles, remembering how she’d screamed when he’d gone faster. Despite his car accident, Tom will always have an innate love of speed. He also loves Alice for making such an effort with his mum. After grating the carrots she’d gone on to lay the table, chatting away to her about Tom’s childhood, wanting to know exactly what he’d been like as a little boy.
‘What?’ Alice says, aware of his gaze.
‘Nothing.’
‘Thanks for the weekend. I loved your parents,’ she says, settling on listening to Coldplay, one of her favourite groups. Alice often teases him, saying her dream date would be cocktails and a candlelit dinner with Chris Martin.
‘They loved you.’
She reaches over and touches his cheek with the palm of her hand. ‘I love you, Tom.’
The car swerves, almost landing them in the ditch before Tom indicates left at the first parking sign, a quarter of a mile away. He parks the car behind a McVitie’s lorry, slamming on the brakes and turning off the engine.
He takes her face in both his hands and says, ‘I love you too.’
Alice unbuckles her seatbelt and wraps her arms around him.
Tom has never felt happier.
32
Mary’s Diary
August 2000
Alice and Tom have just returned from a week in Majorca. They told me a terrible story. She and Tom had decided to take a walk down to the hotel’s private cove. Alice said it was a hairy descent, especially trying to carry all their swimming kit, a lilo, picnic lunch and sun creams. When they reached the bottom it was quite a drop down to get into the water and the sea was choppy. Alice wasn’t keen on jumping in but Tom was determined she had a swim in the ocean, not just in the pool, so he jumped in first with the lilo, telling Alice to follow. Finally she plucked up the strength, but the moment she was in the water Tom screamed. He had been attacked by a swarm of jellyfish! Somehow, in agony, he managed to get Alice out of the sea and carry her back up the steps to the hotel. Back in their bedroom Alice said she was frantically rubbing cream down his arm. Tom joked with me that when he’s with Alice there always seems to be a drama; they can never pass as a normal couple, however hard they try . . .
The house felt strange when they were gone. I missed hearing Alice sing and play the guitar while I cooked. I’m also used to having Tom around. Before supper we often chat in the kitchen about the day we’ve had, and he enjoys talking to
Nicholas about his wine, before he takes their meals down on a tray to ‘her ladyship’ as he calls her.
I heard Alice and Tom arguing last night. I’d come downstairs to the kitchen to make myself a cup of tea. I’m sure it was nothing serious. They’ve been going out for almost eighteen months now, it’s normal to have the odd row, isn’t it? It can’t be anything serious.
If they were ever to break up, I’m not so sure I’d be able to pick up the pieces.
33
Alice
Six months later, February 2001
‘How’s the singing going?’ Professor Taylor asks, flicking through my notes.
‘Great.’ I’ve been working with Pete for two years now. ‘We’re about to pitch to record companies, so fingers crossed.’
I long to know what Professor Taylor thinks. Does he imagine it will amount to nothing? ‘And how are you feeling?’
‘Fine.’ Tired from non-stop coughing.
‘How much are you coughing?’
I’ve kept Tom awake for the past three nights. Last night I found him crashed out on my sofa. We’ve been tetchy with one another because we’re both knackered. ‘No more than usual.’
He places his stethoscope against my chest. ‘Breathe in . . .’ Tap. ‘Breathe out. Have you had any more bleeds?’
‘One.’ Two if you count the last minor one.
I sense the word ‘transplant’ dances around us. Neither of us has brought it up since that conversation over eighteen months ago when he said I definitely had two more years but ‘If someone were to ask me if you’d live for another five I couldn’t honestly answer.’
A transplant can’t be the right thing for me yet. I can’t contemplate the idea of risking surgery that could end my life, especially not when Pete could be on the verge of securing us a deal. We’ve taken our time to produce an impressive demo. If I have to have a transplant I’ll do it later, after my first album has been released. Once I’ve made my name.
I want success so much it hurts.
He heads back to his side of the desk and sits down. ‘Your lung function is better than it has been in a while.’
Overwhelmed with surprise and relief, I joke, ‘Have you been pretending all this time that I have CF?’
‘I’m wondering if the machine was faulty or if you wrote down your results today.’
‘Honestly, I’m miles better now that I’ve started smoking cannabis.’
He shakes his head, as if only I could get away with saying something like that to him. ‘It’s still far from good but perhaps the singing is helping those lungs of yours.’
‘Professor Taylor, I was thinking . . .’ Tom would surely be terrified if he heard what I’m about to ask: ‘. . . could I ever have a child?’ During our two years together we have never mentioned marriage or children. We don’t talk about the future, but that doesn’t mean I don’t think about it, especially since Lucy and Jake are trying for a baby.
‘It’s more difficult for you than most women with CF because of your gut and liver problems.’
‘Are you advising me not to, then?’
‘No. We’d probably manage to get you through it if you turned into a model patient, but there would be more risks.’
‘To me or the baby?’
‘You. It would cause extra demands on your body and some women never get back to being as healthy as they were before pregnancy. And of course, Alice, you need to think of the practical side, the demands of looking after a child as well as keeping up with your treatment.’
He hasn’t said an outright ‘no’; nor has he mentioned the word ‘transplant’. I watch Professor Taylor draw a graph in the corner of a page of my notes; he turns it round to show me. ‘We want to keep the line steady. Recently you’ve had huge dips . . .’ He draws a line that plunges to the bottom. ‘. . . And then we’re back on an even keel but then, bam, another raging chest infection, another IV course. We want to keep the line straighter.’
‘Keep steady, Eddy.’
‘Exactly.’ Finally he can’t help smiling at me. ‘Keep steady, Eddy.’
‘One more thing,’ I say to him, as I’m about to leave. ‘I’m thinking of getting a tattoo.’ I’ve already booked the appointment this Friday . . . ‘On my arm, just a small one.’
‘You don’t need my permission. It’s only an issue post transplant.’
I freeze at the word.
A transplant could give me a future or it could kill me.
‘Then, I would highly discourage it, Alice.’
I shut the door gently behind me, hearing that haunting voice saying, ‘Alice, this isn’t going to go away.’
34
‘What are you going to have?’ I ask Milly, who has taken a rare Friday off work. We’re sitting on a black leather couch outside the tattoo booth, music playing in the background. A young Italian woman called Paola, wearing trainers and a black woolly hat, emerges from the booth, handing us a form to fill in along with a couple of design books to leaf through for inspiration. Although I think I know what I want already.
‘I’m not so sure anymore,’ Milly says, twisting a strand of her red hair. ‘I might just watch you.’ She’s wearing a polo neck under dungarees, her image so wholesome when surrounded by ear and tongue studs, along with tobacco and gothic clothes.
‘I’m sure it doesn’t hurt that much,’ I reassure myself as much as her.
When I hear the patter of feet accompanied by heavy breathing and panting I know that can only be one person with her pug, Bond. We overhear Susie greeting the woman behind the counter of the shop, Bond receiving an ecstatic welcome along with the rattle of a jar of treats. Clearly he is a VIP guest. ‘You be good now, Bondy,’ Susie says, before joining us in the waiting area. She’s dressed in jeans, a baggy jumper and stripy scarf. I think she’s lost even more weight since I last saw her. ‘Sorry I’m late,’ she says breathlessly, dumping her rucksack on the floor before sitting down next to us. ‘You won’t believe this, right. I was so tired that I had to get a cab here from the tube and the driver goes, “It’s only down the road, love, use your legs.” So I tell him I have cystic fibrosis, a lung condition, so can he just drive me?’ She stops, pauses for breath, her chest sounds thick with mucus. ‘He signs the receipt and on the back writes, “lazy cow”.’
Milly and I are outraged. ‘You should report him,’ Milly says.
‘Stupidly didn’t take down his number plate.’ Susie reaches for her inhaler.
‘People can’t see what’s going on, on the inside, can they? It’s an invisible illness,’ Milly reflects.
‘Bandage your ankle,’ I suggest to Susie. ‘Make it visible.’
‘Yeah, but I shouldn’t have to. Anyway, enough of that, what are you two going to have?’ She picks up one of the black books as if it’s a menu and we’re about to choose a starter. Susie doesn’t want any more tattoos; she’s only here for anti support. I remember her telling me that when she was growing up she had virtually every part of her body pricked and punctured by a needle. I’ve seen pictures of her as a teenager with bleached orange hair, a line of studs in both ears, piercings in her nose, lip, belly button and tongue . . . ‘My boss at the hair salon didn’t like them so one by one they all came out. I think in some way I was stamping my foot against our routine, you know, the hours and hours of daily physio and all the pills I had to take, and my parents’ strictness on top of it all. I think I was, you know, rebelling. Mum and Dad hated my piercings, but they made me feel in control of my body.’
The sliding door to the booth opens and out comes a beefy man with cling film wrapped around his freshly tattooed arm, which reads: ‘Be Kind’.
‘You go first,’ Milly nudges me.
‘Can my friends come in?’ I ask Paola.
‘Of course,’ she replies with a heavy Italian accent.
I sit down on the leather chair while Milly perches on a stool and Susie crouches on the floor with her back against the wall. ‘I want to have a bird,’ I say to
Paola. I show her my design. It’s a simple black outline of an owl.
‘It is lovely, Alice, stylish.’ Paola opens one of the cupboard doors next to the sink and takes out a small paper packet. Everything is a stark white in here, from the cupboards to the tiles, the walls and the bright lights. ‘What is that?’ Milly is staring at a long thin needle as if it were an instrument of torture.
‘A nine round liner. We only need a little needle for this one. It won’t hurt.’
As Paola organises everything else she needs on her trolley, she asks why I’ve chosen a bird.
‘It was this time when we were on holiday in Portugal. I was six, my brother Jake, eight. He woke me up, terrified, pointing to these huge clawed feet on the tiles of our bathroom floor.’
Paola asks me to slip off my top, holding a bottle of Dettol in one hand.
‘Jake rushed to wake up Mum and within seconds she was in our bathroom, holding this bird so gently in a towel,’ I tell them, as if I can see her now, barefoot in her long floating nightgown. ‘It was an owl.’ I remember being transfixed as Mum had carefully released it off our balcony, Jake and I watching in awe as it flew away, soaring down the valley and into the dawn light. ‘It was the most beautiful creature we had ever seen.’
It reminds me of how brave my mother is.
Brave and practical.
It also reminds me of freedom.
Spreading my wings.
Flying from darkness into sunlight.
Sometimes I feel trapped in my own body.
So trapped I feel as if I’m drowning . . .
Paola turns on a switch at the wall. ‘I love that,’ Susie says. ‘Tattoos always tell a story, don’t they, they’re like an expression of growing up.’
‘Does it hurt?’ I can’t help asking Paola now.
‘It will maybe sting, but yours is little, it will only take six, maybe seven or eight minutes.’
‘Will it bleed?’ Milly asks.
Determined not to bottle out, I say, ‘Compared to what we’re used to, this should be a breeze, Milly.’
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