If You Were Here

by Alice Peterson

  Anger barely touches the surface.

  ‘I was devastated,’ I admit, before going on to tell Dr Fraser about the diaries Granny found. ‘At least I know now that Mum was going to tell me, eventually. If only she’d said something right from the start.’

  I want Dr Fraser to agree, to tell me that honesty always pays off.

  ‘Do you understand why your mother may not have told you?’ she asks instead.

  ‘To protect me.’ I shrug. ‘I realize I can’t dwell on the decisions she made, but to hear this in my twenties was . . .’ – I search for the right word – ‘shattering.’

  Dr Fraser nods again. ‘But how do you tell a child?’

  ‘You tell them the truth.’

  ‘When is the right time? When might they understand?’ Dr Fraser asks. ‘These were probably some of the questions your mother struggled with, daily.’

  ‘I get it’s not easy—’

  ‘It was my fault,’ Granny says. ‘If you’re going to point the finger—’

  Dr Fraser stops her. ‘No one wants to point a finger.’

  ‘But if only I’d been able to talk to Beth, we wouldn’t be in this mess.’

  I stare ahead. ‘I’d made all these plans.’

  ‘What plans?’ Dr Fraser asks, her tone calm but direct.

  ‘I was about to move to America with my boyfriend. My fiancé.’

  ‘And you can’t still go?’

  Somehow my pride can’t tell her what happened with Theo, but I sense she’s guessed, given I haven’t answered the question.

  ‘If you were in my shoes, what would you do, Dr Fraser?’ I ask. ‘Would you take the test?’

  I search her face for any clues, but her expression remains neutral. That’s her job, after all. My job is to work hard to come to my own decision.

  ‘Florence, there is no right or wrong; it’s a deeply personal decision. What I tend to ask anyone in your position is: what is most important to you?’

  I want to be my old self. I want to have normal problems, like laddering my tights just before a meeting or having a disastrous haircut or a disappointing first date with a man who quibbles over the bill, just as Maddie had the other week. I’m terrified that if I don’t find out whether or not I have HD, every single day I’ll wonder if this is the day I start to spot symptoms . . .

  ‘Is the fear of carrying the gene worse than knowing one way or another if you will inherit HD?’ she asks.

  ‘In many ways.’ I inhale deeply. ‘It’s the unknown, the uncertainty.’

  ‘Would finding out alleviate that fear?’

  ‘Yes and no. I mean, if I found out I was positive I’m not sure yet how I’d cope,’ I say. ‘Do most people want to know?’

  ‘No. Most people don’t,’ Dr Fraser says.

  ‘Really?’

  ‘You look surprised?’

  I’m unsure why.

  ‘Most people think they want to know, especially right after discovering they are at risk,’ Dr Fraser continues. ‘They want to rip the plaster off. But genetic counselling can help people to understand that there are choices. It can prepare them not only for the result, but to be able to deal with what comes afterwards. Can you expand on your fear, Florence? Pin down exactly what it is, apart from the uncertainty, that scares you?’

  There’s another long silence.

  I’m frightened I’ll be alone for the rest of my life.

  No matter how much I tell myself that, right now, I’m better off single, it doesn’t stop me from feeling alone, and from remembering the days with Theo and how much I miss him. And it doesn’t stop me from fast-forwarding to the life that Granddad had, although Granddad had Granny.

  What if I have no one? Will I live in a care home, no one visiting me? Or if they do, will they dread coming because they don’t know what to say or how to act? I imagine James living in the country with his wife and two Labradors, along with three screaming children and when the phone rings he’ll pull a face and ask his wife to pretend he’s not in.

  I must be smiling because Dr Fraser asks me what I’m thinking about. So I tell her about James.

  ‘Honestly, he does that with his mother too, the lies I have to tell for him.’ I roll my eyes, all of us laughing, the tension easing, before I confess, ‘I’m scared I’ll be alone.’

  ‘You won’t be,’ Granny is quick to argue, looking at Dr Fraser. ‘A beautiful young woman like Flo.’

  ‘I might be, Granny.’

  She turns to me. ‘You won’t.’ She turns back to Dr Fraser. ‘She won’t. I’m here.’

  Dr Fraser looks at us both. ‘It seems you’ll always have your grandmother, Florence.’

  But she knows what I’m getting at, and surely she would feel the same way too?

  Dr Fraser draws me back to the question with, ‘Florence, where does this fear of being on your own come from?’

  ‘My mother’s fiancé walked out on us, and . . . the same thing happened to—’

  ‘It’s his loss,’ Granny cuts in, before apologizing when Dr Fraser raises her hand, signalling for her not to interrupt this time.

  ‘The moment you tell someone,’ I claim, ‘they’ll run in the opposite direction.’

  ‘Not everyone will,’ Dr Fraser disputes.

  ‘If this is how it feels when you’re at risk but haven’t had the test, imagine how hard it would be to tell someone new that you are definitely going to get HD,’ I insist.

  ‘If you have cancer or any kind of illness, there will be people who will stick by you,’ Dr Fraser assures me.

  I shake my head. I don’t want her to feed me false hope. ‘It’s a lot to ask though, of anyone, to look after me the way Granny looked after Granddad.’

  ‘Not if you love them, Flo,’ Granny says.

  ‘But it was different for you,’ I say before she can protest. ‘You were already married. There is no reason why anyone would want to go out with me once they find out I could be at risk. It’s like walking into a clothes shop. No one is going to buy the faulty dress when they can buy a new one. That’s why it’s so much simpler not to meet anyone, that way I can’t get hurt.’

  ‘You’ve been hurt already,’ says Dr Fraser. ‘It’s natural you feel this way, but in my experience I have met many people with HD who have gone on to marry and be happy. The right person won’t be scared.’

  ‘Where do the right people live?’ I ask.

  ‘If I knew I’d tell you,’ she says, hinting to the fact that perhaps she needs to meet someone from there too. ‘But they live somewhere. They do exist.’

  If only Mum had met the right person.

  ‘Not everyone is born to be a carer, Florence, and we can’t judge them for that,’ Dr Fraser says. ‘It doesn’t make them a bad person. What’s important is to surround yourself with people who love you. It’s not always about having a husband or partner. Sometimes we can be with the wrong person and feel lonelier than ever. It’s about having good friends and goals. It’s about not giving up.’

  I tell Dr Fraser about running the marathon for HD. ‘That’s fantastic,’ she says.

  ‘But if I were to go on a date,’ I say, still fixated on this point, ‘how would I begin to tell him?’

  ‘You pick your moment,’ Dr Fraser suggests.

  ‘Perhaps it’s not the first thing to launch into over cocktails.’

  She smiles. ‘If you see a future with someone, I believe it’s better to let them in. They need to be a part of all of you, and you will sense when the moment is right to tell them.’

  I know she’s right. Our family has been shrouded in secrecy and I’m exhausted by it, but honesty comes with the deep-rooted fear of rejection.

  ‘No one is spared rejection,’ Dr Fraser says, as if reading my mind and speaking from personal experience. ‘No one is immune to it.’

  She writes something else in her notes before asking, ‘Is there anything else that concerns you, Florence?’

  I nod, knowing I must ask her the question I�
�ve been dreading to know the answer to. ‘If I were to take the test and discover I’m gene positive, does that mean I can’t have children?’ I reach for Granny’s hand.

  It seems an eternity before Dr Fraser replies, ‘Of course you can. Since the huntingtin gene was discovered in 1993 we’ve discovered a great deal more about this disease, Florence,’ she reassures me. ‘Scientific progress will make a huge difference to you. So much has changed since your grandfather had HD, and even since your mother was tested.’

  ‘But how can I have a baby if I don’t take the test?’

  ‘If you decide not to take the test, there are fertility techniques we can use to avoid potentially passing HD to your child. They can be complicated – they carry risk like any pregnancy – but it can be done.’ She looks me straight in the eye. ‘Florence, life goes on whether you have HD or not. You can be a mother.’

  Life goes on.

  ‘This is all hypothetical,’ I remind her.

  ‘It’s good to be hypothetical. You’re young and it’s highly likely this will come up when you do meet the right person. What you do need to think through carefully, though, is having a child when it’s possible you could become symptomatic later on. Having a family is a lot to take on for anyone, so all I’m saying is you and your partner—’

  ‘Whoever the unlucky sod may be.’

  ‘Stop it, Florence!’ Granny barks at me, Dr Fraser trying not to smile again.

  ‘Whoever the lucky man may be,’ she continues, ‘would need to make sure you understand what both of you could possibly be taking on.’

  ‘Maybe I need to work out if I’m going to take the test first,’ I reflect.

  Dr Fraser nods.

  ‘I know this sounds a stupid question,’ I say, though I feel comfortable enough to ask it now.

  ‘No question is stupid.’

  ‘Can you explain to me exactly what HD is? I know what it means and I know what it did to Granddad,’ I add. ‘I’ve read up about it online and read Mum’s diaries, but I don’t understand the gene thing. I don’t get the CAG repeats? Science was never my strong point.’

  ‘Nor mine,’ Granny admits. ‘Always bottom of the pile in physics, no matter how many people were in my class.’ She laughs nervously with me.

  ‘How can a blood test give me the answer?’ I ask.

  ‘Okay, I’ll try not to blind you both with too much science,’ Dr Fraser says, picking up her pad of paper and pen again.

  56

  Flo

  ‘Slow down,’ James urges again. He phoned me from work after my appointment with Dr Fraser, suggesting we could take a day off training, or just do a short easy run, rather than attempt six miles again, but I insisted we stick to the training programme. It’s early November and already we’re coming to the end of week four.

  I turn up the volume on my iPod, pretending I didn’t hear, my new trainers pounding against the pavement as I try to ignore both James and the cold – and the pouring rain. I realize I haven’t eaten enough today, either.

  I know I planned on telling Flo when she was thirteen, but I’m going to wait.

  No, Mum, better not say a word. Just mess up my entire life instead.

  ‘Flo, slow down!’ James calls out again.

  I pick up my pace.

  Waiting is risky. But this is where I am. I’m going to take that chance. After all, Flo’s still very young.

  I wonder if you would have ever told me, Mum? You said you would, but then you said that so many times, didn’t you? First, you were going to say something when Graham left, next you planned to tell me when I was ten, then thirteen, so how do I know you wouldn’t have bottled out yet again? I’d have come home from my holiday and you would have said nothing.

  As I turn another corner, I hear Dr Fraser’s voice inside my head. We all have thousands of genes that come in pairs. We inherit one of each pair from our mother and one from our father. I don’t even know who my father is. Thanks for that too, Mum.

  ‘Flo.’ James grabs my arm. ‘Let’s walk the next bit.’

  Everyone has two copies of the HD gene: one they inherited from their mum, one from their dad. In people at risk of developing HD, one of these copies of the HD gene is changed or mutated in a very specific way. Beth, unfortunately, inherited the altered copy of her father’s gene.

  Mum gave birth to me when she knew she was at risk. Thanks again.

  ‘Flo, we need to pace ourselves. You’re going too fast.’

  ‘I’m fine!’

  ‘Let’s go home. It’s nasty out here.’

  ‘I’m fine!’ I repeat breathlessly, my legs feeling like lead as I try to go even faster to show James I’m improving.

  When I look back, I realize I was plagued with worry about Dad ever since that conversation I overheard in the kitchen when I was ten. I wished I hadn’t overheard Mum and Dad talking, because everything changed after that. I want to give Flo the carefree childhood I never had.

  You know what, Mum, instead of constantly writing in your stupid diary, why didn’t you just sit me down at the kitchen table and fucking tell me?

  You had a right to know. In fact so did I, I hear Theo saying to me now. I still can’t believe Peggy didn’t tell you this until now, Theo’s voice continues to taunt me. How fucking irresponsible! It’s over.

  ‘Flo!’ James takes me by the arm again.

  ‘What?’ I swing round to him, ready to strike.

  ‘If you carry on pushing yourself like this you’ll get an injury,’ he warns me, his tone as sharp as mine now.

  I don’t care. I charge off again, down the steps and under the subway and my thighs are killing me as I tackle the steps on the other side, before James pulls me back once more, forcing me to stop this time. ‘Is this about your appointment today?’

  I don’t know; I suddenly feel so angry I want to punch this wall.

  ‘Let’s call it a day,’ he insists. ‘It’s too grim.’

  For a moment I’m tempted. I look at my watch. We’ve only covered one and a half miles.

  ‘I don’t want to go home, but you can,’ I say, turning up my music.

  James grabs my arm yet again, but this time it hurts. ‘If you keep on stopping me like this, my times will never improve.’

  ‘I don’t care about your fucking times.’

  ‘Well, I do,’ I shout back at him, exasperated, as a few passers-by glance over their shoulders, not wanting to miss a juicy argument.

  ‘You’re not doing this to beat a world record,’ James helpfully informs me.

  ‘Can we just carry on?’ I say, on the verge of tears, running on. ‘I’ll never get round in a good time if I don’t put the work in.’

  ‘You’re not running this for a time!’ he calls out to me. ‘You’re running this for your mum.’

  I stop and turn round to face him. ‘My mum who never told me,’ I say, tears now streaming down my face.

  He edges closer towards me. ‘I know. Wait, Flo, don’t run on.’

  I don’t move. ‘My mum who was always “about” to tell me, James.’

  Will this anger and resentment ever go away?

  ‘Okay, forget your mum for a minute. Remember what you put on your application form?’ he says, standing in front of me now. ‘You wanted to help raise money for research? Flo, there’s this guy who is certain HD is curable—’

  ‘Stop, James, just stop.’ I wipe my eyes. ‘I don’t need you to tell me it’s all going to be fine, because it’s not.’

  ‘Let’s go home.’ He waits. ‘Please, Flo. Before you injure yourself. If you do that it’ll take weeks off your training.’

  ‘Fine. I’m just . . .’ I clench my hands into fists. ‘Today, it was good – she was lovely – but it brought up a lot of stuff and I still don’t know if I want to take the test or not.’ I look at James drenched, realizing he doesn’t have to be running with me tonight; he’s choosing to. ‘I’m sorry. I don’t know how you put up with me.’

  ‘Because someon
e has to.’ A small, relieved smile creeps on to his face. ‘But can we go home now, before we freeze to death?’

  ‘On one condition.’

  ‘Name it.’

  ‘We stop via the newsagent. I’m dying for some chocolate. And some wine.’

  ‘Hallelujah!’ he says, both of us finally laughing as he puts an arm around my shoulders and we make our way home together.

  *

  James and I are huddled together on the sofa, chocolate wrappers scattered across the floor, along with an empty bottle of white wine and two empty glasses. I was like some kind of addict, unable to wait until we got home, tucking into the chocolate the moment we left the shop, and pouring the wine the minute we arrived home.

  ‘There are bound to be days like this,’ James assures me. ‘One moment you’re fine, or you’re at least treading water, the next a big wave comes along and knocks you sideways.’

  ‘It was talking about Mum, and before we did our run I read some more of her diary,’ I admit. ‘I can’t bear all the constant excuses she used not to tell me. It was just one thing after another.’

  ‘I understand.’

  ‘I really liked her,’ I say, referring to Dr Fraser again. I smile, recalling Granny’s baffled face when she was trying to explain to us the science part.

  ‘What’s so funny?’ James asks.

  I tell him about our science lesson, admitting that’s part of my frustration too. I still don’t quite get how one blood test can determine my fate.

  ‘Okay,’ James says with renewed energy, as if this is a problem he can fix. ‘As you know, our genes are made up of the genetic material DNA, so when you were born, Flo, you inherited half the genetic material from your mum and half from your dad.’

  ‘My non-existent dad.’

  ‘You still have his genes.’

  ‘Right.’

  ‘We all have two copies of the HD gene, and near the beginning of this gene is a repetitive sequence that reads, C-A-G.’

  ‘This is the part where I got lost,’ I confess.

  ‘Our DNA is made up of four chemicals: Adenine, Cytosine . . .’ He stops. ‘Actually, just think of them as A, C, G and T and think of it as code used by scientists to describe DNA, okay?’

  ‘With you.’