‘You talk about him a lot, you know.’
‘Do I? I suppose we’ve been spending more time together recently.’
‘That’s it? He’s just a friend?’
I nod.
‘Could he be more?’ she pushes.
‘No.’ I smile at the idea. I know James would laugh too.
‘Shame,’ Iona says. ‘Sounds like he really looks out for you, and blokes like that don’t come along too often.’
‘He’s going out with someone – not that that makes any difference – and I’m not interested in dating anyway, not at the moment.’
I admire Iona’s guts, but I don’t think my confidence could take another hit. Not yet.
Iona glances at her watch. ‘Right, need to go.’
‘I’ll get this,’ I suggest, gesturing to the bill.
‘I’ll get the next one then,’ she says, before we plan to meet next Sunday, to race our first half marathon. ‘Holy shit,’ we both exclaim at the same time, before laughing afterwards.
After she has left, I’m considering cheating and taking the tube home, before Iona heads back into the café. ‘Flo, I was thinking, would you like to meet my dad?’
*
Iona’s father, Ray, is at Sunrise Nursing Home, in Ealing, West London, and his room is on the ground floor, overlooking the road and the pub. When we arrive, a tall man in a hooded sweatshirt waves at us from his window. ‘His favourite hobby is people watching,’ Iona says, waving back, ‘and going to the pub to watch the footie.’
After signing our names in the visitors’ book, and saying hello to the member of staff on reception duty, Iona and I approach the sitting room, noticing one of the residents singing to two bright green birds in a cage, and other patients drinking coffee or tea as they stare with glazed eyes at the television.
We walk down another long corridor, before knocking on a door. Iona doesn’t wait for a reply. ‘Hi, Dad,’ she says, as she leads me into his bedroom, dominated by a television, fridge and framed photographs of Iona and her family dotted around the room. He smiles, before he coughs, and then his cough turns into a choking fit, Iona rushing to pour him a glass of water.
‘Here, Pops, sit down.’ She helps him into his armchair, by the window. He drinks the water slowly, before he glances at me. Tentatively, I step towards him.
‘Dad, this is my friend, Flo.’
He doesn’t say anything, but I sense he’s aware I’m here.
‘Sit down,’ Iona says to me, gesturing to the chair, whereas Iona perches on his bed. ‘Pops, tell Flo about your favourite TV programmes. I’m surprised you’re not watching anything now.’
Again he says nothing.
‘Dad used to love Jeremy Kyle,’ she teases. ‘Now it’s all cop shows and hospital dramas, isn’t it? Oh and footie nights.’ She turns to me. ‘He sits with all his friends in the lounge and watches the match with a couple of beers.’
I sense it’s something he probably loved before, and know how important it is to keep a part of the old Ray alive.
As Iona goes on to tell her dad that we’re training for the marathon, I catch a glimpse of his ensuite bathroom with solid white handrails around the loo. I look away.
‘It’s great news about Iona getting married, isn’t it?’ I say, changing the subject. I’m taken aback by how young he looks; he can only be in his fifties. When I was little I thought Granddad was ancient, but he would have been about Ray’s age too, and it hits home even more how cruel HD can be, shortening lives.
Iona picks up a wedding photograph of her father and mother on his bedside table: he has long hair and a nose ring, and is wearing sandals. ‘Do you remember your wedding day, Pops?’
I take a peek at the photo. ‘You were a bit of a rock star, weren’t you?’ I say.
‘He was. Rocker Ray.’ Iona laughs.
There is a glimpse of a smile from him, as if a memory has been reawakened.
‘Mum and I wanted to put up as many pictures as possible,’ she tells me, ‘so that the carers can see he has a history; he’s not just some poor old bloke with a disease.’
Iona digs into her rucksack and produces a card. ‘I wanted to show you my wedding invite, Pops. It’s next June. We’re having the reception in an old converted barn, think oak beams and fairy lights,’ she enthuses, but I don’t think Ray is thinking oak beams and fairy lights for a second. It seems as if he is just a shell of the person he used to be. Iona continues to talk about all the plans she is making, and where she and Steve are going on honeymoon.
‘You will make the most beautiful bride,’ Ray suddenly says.
I am so stunned he has spoken and understood that it makes me want to cry. Iona looks tearful too, as she says, ‘Ah, thanks, Dad. And remember you’re giving me away. You’d better get me to the church on time.’
As we’re signing ourselves out in the reception, Iona tells me her father is silent ninety per cent of the time, ‘But it’s that ten per cent Mum and I cling to,’ she confides. ‘That ten per cent means the world to us.’
*
Later on in the afternoon, when I arrive home, there are no lights on, the flat quiet and dark. James can’t be back yet. There is nothing surprising about that, except for my disappointment.
As I head into my bedroom and get out of my running clothes, I wish he were here so I could tell him that I ran twelve miles today, and not only that, but that I’d vaguely enjoyed it. I didn’t crucify myself for stopping, and I didn’t look repeatedly at my watch.
As I was running today I heard James’s voice inside my head, saying, ‘One of these days, Flo, you’ll go out for a run and forget you’re even doing it. You’ll feel as if you were flying.’ I can’t imagine that. But then again, I never imagined I’d be able to run twelve miles.
As I lie in a deep hot bath, I think about Iona again. She has reconciled her fate with such strength and humour, her spirit seemingly unbreakable. ‘Finding out was the best decision of my life. Everyone’s different, but for me, no man’s land wasn’t a happy place,’ she said.
She has healed her relationship with her mother. She is getting married and planning on having a family. Her life is moving on.
I wait to hear the key in the lock. I hope James comes home soon.
Iona’s right: no man’s land is not a happy place to be.
I submerge myself under the water, the warmth comforting. Just like Iona, I don’t want my life to be a waiting game.
I think I’m going to take the test.
61
Peggy
‘In this lesson, we’re going to learn to talk about what we do in our spare time,’ Maria says, pacing up and down the middle of the classroom in tight jeans and high heels that are certainly attracting the attention of Colin, the antiques dealer. ‘Who in the class likes sport?’
No one puts up their hand. Maria places her hands on her hips. ‘No one plays anything? Tennis or golf? Football?’ She glances at the men.
‘I play cards,’ I say, which makes everyone laugh for some reason. ‘Bridge.’
‘Peggy gioca a carte,’ says Maria. ‘Who plays a musical instrument?’
Again, no one puts up their hand.
‘We do bugger all!’ says Colin, roaring with laughter. ‘Except work.’
‘And learn Italian,’ I chip in.
‘Studiamo l’italiano,’ Maria says, writing it on the white board.
‘By the way, have you heard the news?’ Colin asks, for some reason looking at me.
‘What news?’ I say.
‘I saw it on my phone.’
‘I only keep my phone on in emergencies,’ I tell him.
‘Well, that’s not much use, Peggy,’ he says. ‘Someone could be trying to call you right now in a major pickle. Anyway, it was a BBC news alert.’
Iris enters the classroom. ‘Buon giorno, sorry I’m late. Boiler broke down,’ she says breathlessly. ‘Peggy, have you heard the news?’ she asks, taking her usual seat in the corner. We are suc
h creatures of habit.
‘What news?’ I ask with mounting impatience.
‘Can we save the talking until the end of the lesson?’ Maria suggests.
‘They’ve found a treatment that could prevent HD,’ says Colin.
‘Exactly,’ echoes Iris. ‘It made me think of Flo.’
I rummage in my handbag to find my mobile.
‘It’s plastered all over the papers too,’ Colin continues. ‘It was hard to miss.’
Well, I haven’t seen a paper yet, nor turned on the TV. I was walking Elvis in the park before my lesson.
Maria perches on the end of her desk, aware the lesson isn’t going to get very far until I know more about this news.
Immediately, I switch on my mobile. I have several missed calls from Ricky and from James.
It rings once again and Ricky’s name appears on my screen.
‘Peggy, take it,’ Maria insists. ‘This sounds important.’
I leave the room in a fluster. ‘Ricky?’
‘Where are you?’ he asks.
‘Is this about the drug?’
‘It’s incredible, Peggy. They’ve made a real breakthrough. Does Flo know?’
62
Flo
After the meeting with Harriet and the sales team, discussing our last-minute discount off winter package holidays and some of the projects we have in place for the new year, I head back to my desk, before turning the sound back on my phone.
That’s odd. I have an alarming amount of missed calls.
The first one is from Maddie, then two from James, two from Iona, and when James calls me yet again . . .
Oh dear God, please let nothing be wrong.
‘Have you heard?’ he asks, sounding as if he’s out on a run.
‘Heard what?’
‘Flo, go online, there’s been a massive breakthrough.’
I rush to my computer, tap some keys:
In an announcement likely to stand as one of the biggest breakthroughs in Huntington’s disease since the discovery of the HD gene in 1993, Ionis and Roche today announced that the first human trial of a huntingtin-lowering drug, IONIS-HTTRx, demonstrates that it reduces mutant huntingtin in the nervous system, and is safe and well tolerated.
‘Oh my God,’ I utter.
‘Exactly,’ he says. ‘Let’s talk about it tonight? Are you in?’
‘Yes, please.’ I stare at the screen, still in shock.
The moment we say goodbye I try to explain to Harriet and Natalie what’s going on, when Iona calls. I excuse myself, rushing downstairs and heading outside.
‘Holy shit! Steve and I are dancing round the kitchen table.’
After our call Maddie rings me again. ‘Flo, isn’t it exciting? I’ve been sending you messages on Facebook but had to speak to you.’
‘I know, it’s amazing, but can I call you back in a minute?’
I hear her dialing tone. Pick up, Granny, pick up . . .
‘Flo,’ she says.
‘I know, Granny,’ I finish, before we both burst into tears.
63
Peggy
Ricky, James, Flo, Shelley and baby Mia are huddled in my sitting room, empty pasta bowls on the floor, the television still on. It’s coming up to the ten o’clock news, and although we’ve heard it all before, we’re still glued to the screen, listening to the presenter.
‘Tonight at ten, a major breakthrough in the treatment of Huntington’s Disease, which could lead to new therapies for Alzheimer’s and other conditions. By correcting the defect that causes Huntington’s, the new experimental drug is potentially the biggest breakthrough in half a century.’
I notice James squeezing Flo’s shoulder, Flo sitting cross-legged on the floor, her head resting against his knees, Elvis curled up asleep on her lap.
After Ricky called, I asked Maria if I could excuse myself from the lesson.
‘I’m so sorry, but my husband, Timothy, he died of it, my daughter had it too, and my granddaughter is at risk but now there is hope—’
‘Go,’ Colin had said. ‘Go, Peggy! Get out of here!’
‘Yes, of course,’ Maria agreed, and soon the whole class was willing me to go.
‘Good luck,’ they were calling out as I gathered my textbook, clumsily trying to shove my folder into my bag.
‘Arrivederci!’ I said, before leaving and bolting down the stairs. There is nothing like good news to give your old tired legs a new lease of life.
I grabbed a newspaper from the nearest shop and then devoured the article about the drug as I was walking home. Just as I reached the front door, Flo called, and we hardly had to say a word to one another. We just sobbed, me wondering if it was all a dream.
Yet here we are, and it really is true. Today is the first day in years that I have had hope.
As far as I can gather from the news, forty-six people have taken part in this trial led by scientists at University College London. I watch on the screen as a patient is lying on his side on a hospital bed, about to receive an injection into the fluid that bathes the brain and spinal cord. In theory, this drug reduces the amount of the corrupted huntingtin gene that causes the toxic protein, which destroyed my Tim’s brain and was intent on doing the same to Beth, and possibly Flo if it has the chance.
Slowly, I’m beginning to understand that the treatment is designed to silence the gene, or at least lower the levels of the harmful protein.
‘For the first time, we have the potential,’ I watch Professor Sarah Tabrizi say, who is the lead researcher and director of the HD Centre at UCL. ‘We have hope for a therapy that may one day slow or prevent Huntington’s Disease completely.’
A family comes on to the screen next, a family blighted by HD, claiming the lives of their mother, uncle and grandmother. My heart goes out to them.
‘The Allen family have made a promise to their children that a treatment will be ready in time for them. Research over the next four years will see if gene silencing can fulfil that promise’.
If only Tim and Beth were with me now to share this news. It’s not a cure, but it’s something we can hold on to, and I’m going to cling on to it for as long as I live.
64
Flo
After leaving Granny’s, I climb on to the back of Vera. I don’t want to go straight home. I’m too wired to go to bed, I’ll never sleep. And as if James can read my mind, he turns to me and says, ‘I don’t feel like going home yet, do you?’
London has a certain magic about it at night, but especially at Christmas. James navigates his way around Hammersmith Broadway, and soon we’re on the Cromwell Road heading towards South Kensington, a route we have jogged many times during our training.
I have no idea where he’s taking me, all he said was he had an idea. I hold on to James tightly, feeling a mix of emotions that I can’t quite figure out.
Yes, I’m happy. Of course I am. Yesterday I knew nothing about this drug. But also yesterday I was closer to thinking I wanted to take the test. Does this change how I feel now?
I breathe in the cold night air, grateful to feel the wind whipping against my face. I find the sound of the traffic, the noise, the lights and the warmth of being close to James, comforting. Right now, the last thing I need is to be alone.
*
James and I take our hot chocolates and watch the ice-skaters at the pop-up rink outside the Natural History Museum. ‘Always makes me smile watching people fall flat on their backsides,’ James says. He nudges me. ‘You’ve been quiet tonight. How are you feeling about it all?’
I look at him, still unsure how to explain the muddle in my head. ‘I know I should be feeling happy.’
‘Should be?’
‘And I am. James, it’s amazing. Today has been extraordinary.’ I see Granny’s face, the hope in her eyes, and remember how she held me in her arms before saying goodnight. And then Ricky hugged me, even Shelley too, who until this evening I hadn’t met properly.
‘I was thinking if only I wer
e little again,’ I continue, ‘and Mum were still alive, so she would have a chance.’
James nods.
‘And then I was thinking, what makes my life so important, James?’
Confusion clouds his face. ‘Flo, this is crazy talk.’
‘I know, but—’
‘This drug could be available to you in time; that’s if you have HD.’
‘I know it’s good news,’ I insist again, ‘but it just got me thinking, that’s all.’
‘Thinking that you’re not worth it,’ he raises his voice.
I turn to him with half a smile. ‘Would it be such a tragedy to humanity if I were to die?’
‘Flo, stop it,’ he says, visibly uncomfortable, shocked and puzzled by my reaction, when he no doubt thinks I should be dancing at the news.
I feel a lump in my throat. I think this is coming from missing my mum, reading her diaries and realizing how much I have let her down because I haven’t pursued my art. She was a single mother and she sacrificed so much for me, so that I could go to one of the best art schools in the country, and here I am, with nothing but a failed relationship behind me, wasting my training by not doing what I set out to do.
‘Why should I expect the scientists and doctors to work faster for someone as unimportant as me, so I can sit around watching films on Netflix for a few more years?’
James turns me towards him. ‘For fuck’s sake, Flo,’ he says now, disbelief and fear in his voice, ‘can you stop putting yourself down like this? The scientists are working hard for you because everyone matters; every single person in this world counts.’ He shrugs, ‘Well, there are a few exceptions, but every person skating on this ice rink matters. See that girl . . .’ He leans closer towards me, before pointing to a teenager with long blonde hair, wearing a woolly hat with matching bright red jeans, ‘She matters because she’s someone’s daughter or sister or best friend, and that old geezer over there, who quite frankly is scaring me by being anywhere near the ice,’ – he points to a man with snow-white hair, about Granny’s age, exceptionally game to be skating on such doddery legs – ‘he matters because the whole family will be descending on him for Christmas, and they can’t imagine a time when there will be a Christmas without him.’
If You Were Here Page 22
