‘Everyone has this C-A-G repeat for this particular gene, okay? I do, Granny Peg does, so does Maddie, but what we have inherited is a copy both from our mother and father, each under 20 repeats, which is normal. Whereas your mum would have had one normal copy and one copy with 40 or more CAG repeats. Does that make sense?’
I watch him lean over to the coffee table to pick up a pad of paper and a pen. He writes: CAGCAGCAGCAGCAGCAGCAGCAG.
It’s still another language to me. A language I don’t want to learn, but I have to, to feel more in control. ‘How do you know all this, James?’
‘I learned it at college. Animals have genes,’ he reminds me.
‘So the reason it’s fifty-fifty for me,’ I realize, ‘is because there’s a chance I might have inherited the larger-size gene from Mum.’
He nods.
‘But if I’ve inherited the two normal-size ones—’
‘You won’t get HD,’ James finishes for me. ‘The blood test would show two normal C-A-G repeats.’
‘And it’s the huntingtin protein, produced by the HD gene, which causes harm to the brain cells.’
‘Exactly.’
I take in a deep breath, as if I’m about to take the blood test now. ‘I can’t believe how stupid I was to rush this,’ I mutter, thinking of how willingly I’d given my vein to Theo’s doctor, when I didn’t even understand the process.
‘Would you take the test, James?’
‘I knew you were going to ask me that at some point.’ He helps himself to another chocolate. ‘I don’t know, Flo, probably not. I kind of see life like a tube map, with all these stops we could get off at, like cancer, a plane crash, falling off a cliff or Alzheimer’s here we come—’
‘This is cheerful.’
‘You asked. Or there’s the stop where we die peacefully in our bed at the end of the line with our family around us. Obviously, that’s the place we all want to end up, but if nothing can change our route, if we can’t turn round or get on another train that heads in a different direction, I’m not sure I’d want to know, because there’d be nothing I could do to change it. If I tested positive, all I’d want would be to scientifically reprogram my fate, and it’d kill me that I couldn’t, so I think I’d rather not know.’
‘And if you met someone like me, imagine we didn’t know each other—’
‘That’s impossible. I’ve known you since you were seven, Flo.’
‘Try to imagine we’re strangers on a date and I tell you I’m at risk. What would you think?’
‘I’d feel for you. I’d think it was really bad luck.’
‘Yeah, but would there be a second date or would you be planning your exit strategy immediately?’
‘Flo, it’s hard to say when it’s you.’
I turn away. ‘That’s a no to the second date then.’
He turns me back to face him, puts a finger under my chin and tilts my head upwards so that I can’t avoid his eyes. ‘It doesn’t mean no. Besides, I didn’t think you were interested in meeting anyone right now.’
‘I’m not, well not right now, but we talked about it today, how the right person won’t be scared.’
‘I’m sure he won’t be and when he does come along, I’ll be sure to warn him not to become your marathon training partner any time soon.’
I laugh. ‘I’m sorry, James. I’m such an idiot.’
‘No, you’re not. No one can imagine what you’re going through right now, least of all me. The only thing I’ve ever had to deal with was my dog dying and breaking up with Emma—’
‘That was bad enough.’
‘Yeah, but that’s just life, everyone has relationship problems. I know the thought of HD is a terrifying thing to face, but in many ways none of us have a clue what’s round the corner. I could get run over by a bus tomorrow.’
I shouldn’t smile; it’s just the way James said it. ‘Please don’t.’
‘My stop could be sooner than yours, for all I know.’
‘Shush,’ I plead.
‘Anything can happen, Flo, good, bad, ugly, wonderful and everything in between. Isn’t that the magic of life, to hop on the ride, and hope for the best? But if you do decide to take the test – and I get that too – I’ll be here for you.’
‘Thank you.’ I rest my head on James’s shoulder, feeling safe and lucky to have such a good friend. I don’t know how long we sit in companionable silence until finally I break it.
‘It’s an odd thought, knowing I’m made up of someone I’ve never met,’ I reflect, imagining adopted people must often feel the same way, however close they are to their parents. They must wonder where certain traits came from, peculiarities and mannerisms.
When I look in the mirror and see my olive-toned skin and dark brown eyes, I often imagine what my father might look like. If he’s even still alive. I guess that’s another thing today brought up: it made me think about Theo and Graham, and how I have always craved a father figure in my life. I think, in many ways, that’s why I went for an older man. I believed Theo could offer me not only love, but security too.
‘Anyway, how was your day?’ I ask, ‘apart from being shouted at by your neurotic flatmate?’
Just as he’s about to answer his mother calls him on his mobile.
‘Take it,’ I urge. ‘Don’t screen.’
I readjust my position on the sofa and listen to the comforting sound of James talking next to me. For a moment I think about Granny. I hope today wasn’t too painful for her. She promised me she was fine, and she also swore she wasn’t going to be alone tonight. She’s having supper with a few friends she has met on her Italian course.
I am no closer to knowing if I want to take the test or not. If anything, I am further away. But this time there is no rush. Dr Fraser suggested I see her again in a month’s time.
I shut my eyes, and before I know it, I’m falling into a deep sleep.
57
Peggy
As I get undressed for bed, I’m glad I didn’t cancel my supper tonight with two of the women from my Italian course: Sarah who wants to move to Florence when her husband retires, and Iris, a retired teacher about my age, with two daughters, one getting married to an Italian chap in the New Year.
I was close to calling off the night, certain I’d be poor company, only able to think about Flo and our appointment with Dr Fraser today. I wasn’t sure I’d be strong enough to hear about their families and their seemingly untroubled lives. I was tempted to sit in my armchair and watch a recorded episode of Flog It! eating a poached egg on toast. There is a certain ease and comfort in being alone.
One moment, I’m longing for Flo to take the test. I’m dreaming of her saying to me, ‘Granny, it’s okay; I don’t have it’. But the next I’m praying she doesn’t.
Like Dr Fraser has warned, Flo needs to be aware that finding out you are gene positive can remove hope. Once you know, there is no turning back. It’s like saying something that can never be unsaid.
For some, it must be like living with a permanent black cloud over your head, just waiting for it to rain. For others, perhaps finding out doesn’t remove that hope but allows them to plan. It motivates them to make the most of the time they have.
I believe Beth was in that camp. Not once did she look back and regret. She had a successful career. She loved being a teacher. My only sadness was she never met anyone after Graham. She didn’t meet the right person, though I never got the sense she even tried, just as I didn’t after losing Tim.
If it were me, I probably wouldn’t want to know, simply because I’d rather live in the hope that I will peacefully slip away in an armchair after a delicious glass of champagne and a boiled egg for breakfast.
Some might say that’s cowardly. Others might have to know what lies ahead; they need that map. I believe both choices require faith and strength.
I hadn’t realized I was being so quiet over the meal until Iris asked me if I was all right, also noticing that I’d hardly touched my past
a.
I was about to say I was perfectly all right, but ‘No,’ came out instead, before I told them all about my family, ending with my appointment with Flo today.
They asked questions, listened attentively and Iris even held my hand as she said, ‘What a brave girl. We must sponsor Florence.’
‘We can do better than that,’ Sarah claimed. ‘We can ask our whole class to sponsor her, and I’ll ask all my friends too, and I could come and cheer her on with you on the day, Peggy, if you’d like? I’ve always wanted to watch a marathon live.’
I get into bed and close my eyes, my head and heart lighter for sharing my troubles with them, and I’m touched by their response. We all shared a pudding too: tiramisu with three teaspoons, and Iris and Sarah clapped when I asked the waiter for the bill in Italian, also adding, ‘La pasta era deliziosa!’
I hope Flo is all right. After the appointment she told me she was fine. I have to admit I thought my head might explode when Dr Fraser started talking about CAG repeats. I still haven’t quite grasped what they are. I’ll ask Ricky to explain it to me. He can give me a science lesson for dummies. Lucky Ricky!
I did think Flo looked tired though, deep circles under her eyes. She went straight on to work after the appointment, saying it was good for her to keep busy. She also promised me that she wasn’t alone tonight; she was training with James. She told me how much she was enjoying her running, proud that she’d managed a few weeks without wine or chocolate, or anything naughty like tiramisu.
I admire her willpower. I couldn’t last a day.
Theo wasn’t the right man, but she will meet someone. I may be biased, but any man that can’t see how special she is must be blind.
I switch off the light.
Flo is a brave girl. She takes after her mother and her grandfather.
I’m mighty proud of them all.
58
Flo
‘How hungry are you?’ I ask Maddie, who has come to stay for the weekend.
‘Starving. I wonder how James’s date is going.’
Three weeks ago, James met Chloe online. He signed up to some dating app. Apparently, she’s passionate about vegetarian cooking and writes a food blog.
‘He’s been trying to encourage me to do it too,’ I tell Maddie.
She looks at me with concern. ‘It’s probably still too soon after Theo?’
‘It’s been over two months since we broke up, and the sad part is we haven’t kept in touch at all. I thought he might at least contact me after I returned his ring, even just an acknowledgement.’
‘He probably feels guilty,’ suggests Maddie. ‘I would.’
Occasionally, in the moments when I miss being with him and think what could have been, I have clung on to the hope that he might change his mind. But I realize now I could never be with someone who was uncertain of our future. He can’t take back the things he said. They would always be there, hanging over us.
It’s odd to think how Theo was in my life for eighteen months, day after day, and then in an instant, it’s as if the two of us didn’t exist for each other.
‘You’re wise not to rush into dating, Flo,’ Maddie continues. ‘Believe me, you meet some right oddballs online. I’m going out with someone next week. Probably another dud.’
I smile. ‘Who’s the lucky guy?’
‘Jack. He works in property or something.’
‘Promise to let me know how it goes.’ I add the spaghetti to a pan of boiling water. ‘James just worries I spend too much time on my own thinking about everything. He wants to keep me distracted.’
‘Are you any closer to making up your mind?’
I shake my head. ‘One moment I’m certain I want to, but the next—’
‘It’s a massive decision, and it hasn’t been that long Flo, not really. I bet some people take months, even years to decide.’
‘Exactly. What would you do?’
‘You’re asking someone who reads the last chapter of a book first. I’d have to know.’
I could never read the last chapter of a book first. If I knew the ending before I’d even begun, there would be no twists and turns or surprises along the way. Isn’t half the pleasure of reading a book turning the page to find out what happens next?
‘More wine, Maddie?’
‘Please. But have some too, before I finish off the whole bottle.’
Maddie teases me, just like James does, saying I’m taking my training too seriously. After binging on chocolates and wine the evening of my counselling appointment three weeks ago, I decided to cut both out altogether and plan a whole new diet. I threw out everything remotely unhealthy in our kitchen and replaced them with pulses, grains, oats, mixed nuts instead of crisps, carbohydrate drinks and energy gels, cereal bars, yoghurt, bananas, berries, salmon, pasta and eggs.
I’m now seven weeks into my programme and it’s getting harder, especially since it’s bitingly cold in the mornings and the temptation to stay under the duvet for an extra half hour rather than jogging to work is strong. It’s also dark by three in the afternoon now, but I’m sticking to the programme and my new diet religiously, crossing off each day as I go along. It’s the only thing that gives me a sense of purpose and control right now.
‘How’s the training going?’ Maddie asks.
I tell her that James and I meet up most evenings after work. Normally, he picks me up on Vile Vera and takes me home, before we get changed, have a peanut butter bagel, and then go out again. Last weekend we finished our first eight-mile run without stopping.
‘A tortoise could move faster,’ I said, when we arrived home in the pitch black.
‘Train like a tortoise, race like a hare,’ he said, which he clearly thought was rather quick-witted of him.
‘I’m rubbish,’ I admit to Maddie, describing how at the beginning of our runs, I bounce up and down like a child about to open their Christmas presents. I look every inch the professional, with my new trainers and energy tablets in the back pocket of my sleek running leggings, and an iPod strapped to my arm, but it doesn’t take long for me to feel like a knackered old warhorse, feet barely lifting off the ground.
‘One runner even approached me and asked if I was injured and needed to go to A&E.’
‘Good-looking?’ Maddie asks.
‘He was well into his seventies and fitter than me.’
We both laugh again, before my phone vibrates. It’s a text message from James, sending me a link to an article written by a leading consultant neurologist, Edward Wild, about the latest HD drug news.
‘What’s he doing texting you on a date?’ Maddie asks. ‘I hate the way everyone sits there glued to their phones in restaurants and bars when they’ve got company. It’s not cool.’
‘You know, your brother is pretty special,’ I reflect, thinking how he’s always trying to keep my hopes up, printing out articles or sending me information online about different drugs and trials. I know he wants to help me, but with his scientific background I think he finds it interesting too.
‘He’s all right, I suppose,’ she shrugs. ‘When he’s not being annoying.’
I tell Maddie about this one trial in particular that James has mentioned, a gene silencing treatment that could slow down, even prevent, HD. I know it’s a long way off, and mention of cures and breakthroughs should be taken with a pinch of salt, but it’s reassuring to know there’s talk. It would be seriously depressing if I went online and found nothing.
At least there are a group of off-the-scale-intelligent people working in laboratories, day and night, to try to give people like me hope.
If I do take the test and it’s positive, perhaps I can cling on to the idea that, by the time I get symptoms, there might be a drug I can take that will help me, and thousands of others in the same position.
When I see Dr Fraser next week I’m going to ask her about this trial.
My mobile vibrates again.
‘Is he even talking to Chloe?’ Maddie exclaims.
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‘He must be. He says he’ll be home late.’
*
A few hours later, when Maddie and I are tucked up in bed reminiscing about our college days, James sends me another text message saying he’s not coming home tonight after all, adding a smiley face.
I set my alarm, ignoring my niggling disappointment that he probably won’t be back in time to train with me tomorrow.
Come on, Flo. I’m pleased. It’s time he got over Emma once and for all.
It makes me think of my first love. His name was Freddie. FREDDIE & FLO, TOGETHER FOR EVER I wrote on the outside of my pencil case, surrounded by lots of hearts.
James deserves to be happy, but the funny thing is, I’ve got too used to having him to myself.
Later that night, I still can’t sleep. Quietly, I take Mum’s diary and go into the kitchen. I’m sweet sixteen now and still blissfully ignorant of the future ahead.
59
Beth’s Diary, 2006
I can hardly believe my little girl is sixteen. She’s taller than me now, (she loves to pat me on the head) and I know I’m biased, but she’s beautiful, inside and out, with a smile that could melt the stoniest of hearts.
And she has a lot to smile about right now. The end of exams is finally in sight, along with the prospect of hanging out with Maddie and her friends over the long summer holiday, before she goes to college in the autumn to begin her A levels.
But that’s not the only reason why she’s so happy at the moment.
‘Mum,’ she whispered last night, when she came home after an evening out with Freddie. Not only is Flo taller than me, she now goes to bed later than I do, too, and has regular date nights, while I’m on the sofa with my mug of tea watching EastEnders.
‘Are you awake?’ she asked.
‘I am now,’ I said, relieved to know she was home safe and sound.
‘Can I tell you a secret?’
I sat bolt upright and switched on the light.
‘You’ve had sex,’ I blurted out, terrified, especially since I’d recently tried to talk to her about protection and how she must never feel pressured to do anything before she’s ready. It must have been the shortest conversation in the world, since Flo hates me discussing anything to do with sex: the moment I mention the word ‘penis’ she flees the room with her hands over her ears, claiming they’ve learned about it at school.
If You Were Here Page 20
