25 March 2013
I am running out of hope when I meet Olivia.
The other two producers are people I wouldn’t trust to make a cup of tea, never mind make a programme that could change everything for me and Leo.
‘Look, you know how it goes, Joel. If you go on the journey yourself, we’re talking peak-time potential. Otherwise, you’ll struggle to get a daytime slot.’
She pulls a face. Olivia is already well beyond making daytime TV. She’s only a couple of years older than me, but she’s already getting a name for making tender but intelligent documentaries.
Her looks must help her convince interviewees to open their hearts. Those giant grey eyes convey sympathy and there’s a promise of a smile you want to work hard to see. She dresses in muted shades concealing what looks like a great figure.
‘So are you not interested in working with me?’ I ask. ‘I’d rather know now, save both of us time and energy.’
I wait as she thinks. The braying of the other media types bounces off the glass-and-maple walls of the private members’ club my dad chose for these meetings. The documentary was his idea: to explore the issues around genetic testing while going through the screening process with Leo, something I’ve been considering for years.
Things have moved on since my cardiac arrest thirteen years ago. Back then, they called it ‘idiopathic’ – it had no known cause. But now scientists have identified more faulty genes that might be to blame. If they find one of those in my DNA, they can also tell if I’ve passed it on to Leo.
The proposal appealed because I have been looking for a project with meaning, alongside the fluffier work that pays my brand-new mortgage. But there is one big issue. If it goes ahead, I’ll have to try to talk to Zoë. I already post her new photos of Leo every few months, with a note on what he’s doing and learning. I always end with an offer to arrange a meeting, but she’s only replied to me once, saying one day, when I’m in a better place.
Instead she sends him Christmas and birthday cards, signed, Mummy, who loves you and thinks of you every day. I agonized over whether it’d confuse him to see the cards, but in the end, it’s better for him to know she’s thinking about him. I try to make sure he isn’t missing out. Work lets me be there for everything that matters: concerts and hospital appointments, and sports days in the same playground where I used to kick a ball around.
‘Be honest with me, Joel,’ Olivia says at last. ‘Is this about your career or about the message?’
‘That makes a difference to you?’
She frowns. ‘Yes, because you don’t need this. You’re good on screen, I hear you’re not a diva. You’re going somewhere already. This programme would mean exposing your personal life, and your son.’
‘Which is why I need a get-out, if the news is unbearable.’
She ignores that. ‘They’re moulding you for primetime. Magazine shows. Working with me would take you in a different direction, towards more serious programming. Not as well paid, either. If I’m to take this on, it has to be because it’s close to your . . .’ She blushes when she realizes what she was about to say.
‘To my heart?’ I laugh. ‘It certainly is. But I can’t promise how I’ll respond if the results are bad for Leo.’
‘You’ve seen my work? I don’t sugar-coat things to make my contributors look better.’
‘I don’t need babying. I need someone to trust. Is that you?’
She leans down and takes a large Black n’ Red ringbound notebook out of her messenger bag and writes something on the first page.
‘Does that mean we’re on, Olivia?’
At long last, she gives me a half-smile, and I wonder what the full beam might look like. ‘Joel, I never waste a notebook. And you can call me Liv.’
Liv wangles a commission despite the uncertainties – she’s like a very posh terrier. She also cuts through all the hospital red tape, from the NHS PR people to the steely consultants. Liv reminds me of my mother, and when the two of them meet, they bond immediately.
That’s exactly the kind of woman you need, Mum had said after Olivia drove off. Someone strong who doesn’t put up with any of your crap.
As a producer?
Mum winked at me. We’ll see.
Leo is always the toughest to win over. I’ll never know whether his shyness is down to the drugs Zoë took or just his personality. But even he succumbs to Olivia’s charm offensive in the end . . .
We start filming in early May. Today, I’m interviewing my consultant about genetic testing.
‘Can we chat here, before you go in?’ Liv asks.
We’re in a little park alongside the Thames. London is lovely today but I couldn’t live here. Leo is a real water baby and I’d never tear him away from the seaside, or his grandparents, his friends, the life we both love.
I sit facing Liv on a bench and she lifts the camera onto her shoulder. ‘Rolling . . . Tell me why we’re here, Joel.’
‘The consultant we’re seeing today is one of the world experts in—’
She interrupts before I’ve even finished my sentence. ‘You’re going into piece-to-camera mode. Stop thinking like a presenter and try to tell me how it feels to be Joel, the dad . . .’
‘Do I have to?’ Suddenly I feel exposed.
‘If you want to reach viewers, you’ve got to be a human being.’
I close my eyes as I breathe in. I can smell spring flowers. I don’t have a clue what they are, but they remind me of something.
A time.
A person.
‘OK, Joel, tell me about the testing process? What could it mean to you and your son?’
‘So, Leo means the world to me. I’d do anything to protect him from harm. So I have to decide whether to find out if he’s got a gene that could kill him.’
That smell again. I look down and see the white bells of lily of the valley in the flower bed, and I remember the bouquet my dad bought for me when I found out Kerry was in hospital.
I wonder if she enjoyed the flying lessons. Whether they’ve made her any happier.
I blink: those are not feelings the viewers want to know about.
‘Talk me through how you’ll make the decision about the tests, Joel?’
‘It seems like a no-brainer. Finding a faulty gene could mean getting Leo the right medication, or even his own “magic gadget” – that’s what Leo and I call my internal defibrillator.
‘But . . .’ I hesitate, searching for exactly the right words. ‘What if I’d had the test, as a kid? If we’d known I might drop dead, I’d have been wrapped up in cotton wool by my parents. I would never have found football, never been allowed to train or experience those few precious matches that made me feel the most alive I’ve ever felt . . .’
Liv stays silent but nods, urging me to keep pushing myself.
‘I’m trying to weigh up quality of life against quantity of life. I got lucky, I see that now. I got to discover what I was born to do, but I also got my second chance.
‘Kids like Leo, don’t they deserve to grow up without fear? Genes aren’t destiny.’
‘So, are you having second thoughts?’
‘And third thoughts and fourth and fifth. I believe in people having the right to be tested. But it’s a horrible choice when you have to make it for your own son.’
She nods and reaches up to turn off the camera. ‘That’s more like it,’ she says, with a smile.
‘Glad my trauma is giving you good footage,’ I say.
She doesn’t rise to the bait. Instead, she puts the camera down and smiles. ‘I wouldn’t push unless I thought it’d be good for you, too.’
It takes a month to get the results. We’ve been following another family who discovered their girls were carrying a ‘bad’ gene, so I walk into the consultant’s office feeling like the condemned man.
‘OK, Joel, in our first tests, we had identified the genetic variation we believe caused your cardiac arrest. It seems to have appeared spontaneously, so your parents didn’t pass it on. We’ve now completed sequencing on Leo and I’m pleased to tell you that we have not detected the same variant. Which means . . .’
‘He’s clear.’ I whisper the words, unable to believe them.
The consultant nods, smiling. ‘Yes. Leo is clear. Which doesn’t mean any future children would be clear, too, but . . .’
I don’t hear the rest. It’s Zoë whose face I see now, Zoë who gave Leo the good version of the gene that literally broke my heart. I wish she was sitting here right now, could celebrate with me.
But I will write to her again. She deserves to know our boy is perfect, because of her . . .
I look up and catch Liv’s eye. She raises her eyebrows, offering to stop filming. It’s only now I realize I’m crying.
Afterwards, Liv repacks the kit in the boot of her car while I phone my parents.
She offers to drive me back to Brighton. ‘You probably don’t fancy the train?’
‘You sure that’s not because you want to film me seeing Leo for the first time after getting the good news?’
Liv looks hurt. ‘Is that really what you think of me?’
‘I – no, sorry. I’m being an idiot. You don’t have to give me a lift.’
‘True. But after what just happened, I’d like to.’
We don’t speak on the journey back, as the sun ahead softens from harsh white to deep orange. She drives fast but carefully.
Who is Olivia, really? She knows everything about me, but I know scarcely anything about her.
She pulls up outside my parents’ drive. ‘In case you still think I’m going to whip the camera out behind your back.’
‘Thank you. For driving me back and for being with me on this, I couldn’t – wouldn’t have done it without you.’
When Liv turns towards me, I go to hug her, something we haven’t done before, but after today, it feels right.
And when her lips touch mine, I can’t say if it’s her or me who initiates the kiss. But I do know it doesn’t matter, because that feels right, too.