To all those whose lives have been touched
by Huntington’s Disease
Prologue
Peggy
July 2012
I clutch the letter, my hand shaking.
Deep down I always knew. I was just waiting for Beth to tell me, gearing myself up to be strong for us both all over again.
There were times when I sensed she was distant and anxious. Often I wondered why my daughter hadn’t married since any man would have been lucky to have her by his side. Yet I allowed myself to believe her excuse that she simply hadn’t met the right person, that she wanted to focus on her art, her teaching career and being a mother to Flo.
I have skated around the subject for years, too much of a coward to ask the question I dreaded the answer to. I locked my fears in a box and threw away the key, instead forcing myself to believe she’d escape the odds.
Looking back over the past few years, I was beginning to notice signs, small things, like Beth forgetting our regular weekly call. Once, she locked herself out of the house and had to drive over to get my spare set of keys. I was determined to put it down to her being scatterbrained. Yet there was this persistent voice inside my head.
She could have it.
A voice I chose to ignore.
I look down at the letter once more.
It would kill me.
I wish now with all my heart that I could take back those selfish words. All I wanted was to protect Beth – and myself – from further pain.
I wipe the tears from my eyes.
Right now, I’d give anything to be able to hold my daughter one last time and tell her how sorry I am for letting her down. And what I wouldn’t give to be able to ask her the questions I need answering now like never before.
Did she ever intend for her daughter Flo to see this letter? Maybe, in the end, Beth agreed that none of us should know our future, that we’re better off letting fate take its course.
I can’t tell my granddaughter.
She is far too fragile, not only to discover that this has been kept a secret from her, but to understand the impact it could have on her own life. She is grieving for her mother and it’s taking every ounce of her strength just to get through each day. Showing her this letter would only rake up the past and make Flo fear her future. Yet the decision to keep on hiding the truth doesn’t rest easy either.
I tear a small corner of the letter, tempted to rip it into shreds and pretend I’d never seen it.
I wish in so many ways I hadn’t.
If I show Flo the letter it could break her heart.
But if I don’t . . .
What a fool I have been to think that the past never catches up with you.
1
Flo
Five years later
As I walk down Fifth Avenue, to the mystery place where I’m meeting Theo tonight, I think back on the past week, wishing I didn’t have to pack my bags and return to London tomorrow, back to my job and familiar old routine.
My boyfriend Theo has been based in New York for six months.
‘Long distance relationships can work, Flo, if we see it as an opportunity,’ he’d said, when he broke the news that he was needed over here for a year, possibly more.
And he was right. There is something magnetic about this city. It buzzes with energy, like a party that never stops.
The first time I flew over to see Theo, we visited all the major sights and did all the things you’re supposed to, like taking a trip to the top of the Empire State Building and hopping on a ferry over to Staten Island. Now I’m happy to do my own thing, whiling away the hours with my sketchpad in Central Park, or finding hidden gems off the beaten track, like the original piece of the Berlin Wall I discovered in a small plaza at Madison Avenue.
Each time I visit – mainly for long weekends – Theo takes me to a new exhibition or restaurant that has just opened.
Nothing stays the same here. Nothing stands still.
And everything is so tall. Theo works in just one of the thousand dazzling skyscrapers that grace the Manhattan skyline.
I dodge out of the way of a group of tourists taking pictures of the Empire State Building. Another thing I love about this place is it keeps me fit. There’s no point hailing a cab and spending a fortune sitting in traffic. Everyone here walks for miles.
As I continue down one of the most famous and elegant streets in the world, I think of Granny, hoping she’s all right. It’s the anniversary of Mum’s death today and it’s the first time we’ve spent it apart. When I called her earlier this evening, she told me she was fine and that she’d laid some flowers on Mum and Granddad’s gravestone and would later light a candle.
I promised to light one too.
In many ways Mum’s death feels a lifetime ago, but in others as if it were only yesterday. What tormented me most is the fact I didn’t have the chance to say goodbye. My last conversation with her was over the phone, while I was at the airport in Venice about to board a plane. I was blissfully happy in a steady relationship and I’d just been offered a job designing sets for a small theatre company in Copenhagen. The only problem was my scatty old mum.
‘What now?’ I’d snapped, annoyed at having to repeat the conversation we’d literally just had about what time my plane landed and whether I’d be home in time for supper.
I never saw her again.
I didn’t even tell her I loved her.
That’s what I miss most: picking up the phone to talk to her; hearing her voice.
Her death had seemed so avoidable. One moment she was alive, but the next . . .
‘It was an accident,’ Granny had stressed. ‘A tragic accident that makes no sense.’
Losing Mum will be the hardest thing I’ll ever go through. At one point I didn’t even want to live, oblivion seemed preferable. I don’t know what I’d have done without Granny picking me up and piecing me back together again, especially when her grief must have been just as raw.
I can’t tell you when I began to feel less broken. I don’t recall a turning point. All I know is that food began to taste of something again. Slowly I noticed the sunlight streaming through my bedroom window. I heard the birds sing. My steps began to feel lighter.
And then along came Theo.
We met eighteen months ago in the business lounge at Gatwick airport, when I was heading out on a work trip to southern Spain. I was busy stocking up on all the food and glossy magazines the business lounge had to offer, when I sensed someone watching me. Discreetly, I turned to see an older, fair-haired man drinking a cup of coffee, a flicker of amusement in his eyes. Everything about him spelt success, from his designer suit to his leather briefcase and expensive watch. I returned to my seat, thinking he must have been looking at someone else, or recalling a funny joke he’d just been told.
But then he approached my table.
‘Theodore Holmes,’ he said, sitting down opposite me, as if it were the most natural thing in the world to introduce oneself to a stranger. Before I could say a word, he continued, ‘I don’t know your name yet, but what I do know is I’m going to spend the rest of my life with you.’
It’s not often I’m lost for words. I felt out of my depth, and as if he could read my mind he leaned closer towards me and said quietly, ‘Listen, I’m sorry to come on so strong. You don’t have to agree to spend the rest of your life with me just yet, but how about dinner?’
He handed me his business card. We parted with a handshake, almost as if we were in a boardroom.
‘Deal,’ I was tempted to say.
For the next few days, I imagined our perfect first date with flowers and champagne, the conversation flowing freely, the evening ending with a romantic goodnight kiss. When I returned hom
e, however, I began to lose my nerve, that little voice of doubt creeping in.
After Mum died, I broke up with my long-term boyfriend and I hadn’t been in a serious relationship since. I felt out of practice.
As if he’s really going to be interested in you, Flo. It meant nothing. He probably says the same thing to every woman he meets and he won’t even remember you.
But despite that voice in my head, I couldn’t throw away his business card.
James – my flatmate and best friend’s brother – looked him up online with me one evening after work.
‘Good-looking,’ he said when we saw a picture of Theo smiling broadly into the camera, ‘but knows it. Mind you, I’d be smiling like that too if I had his teeth and his bank account.’
James is a vet, which, according to him is ‘not a job you do for the money’.
He urged me to give Theo a call. ‘What’s the worst that can happen? It’s one night, and if he’s a knob, move on.’
I smiled. James always had a way with words.
Anyway, I took his advice and called.
Theo picked up instantly, and when I said my name, asking nervously if it was a good time for him to talk, he replied, ‘I’ve been waiting for days. Ever since I first set eyes on you.’
I was still hesitant to go on a date. I wasn’t sure I trusted his smooth talk, but I listened to James again, who told me I had nothing to lose except one evening of takeaway, Netflix, and James’s charming company.
On our first date, Theo booked a table at a restaurant on the 32nd floor of the Shard, and over dinner I discovered he left school without any qualifications, but through hard work and self-belief he was now CEO of a company called ASPIRE, one of the biggest global marketing agencies in the world. I tried to ignore that little voice again that wondered why he’d want to go out with someone like me, a mere travel agent, when surely he could have the pick of anyone in this restaurant.
When Theo asked me for a second and a third date, that voice still wouldn’t go away. I kept expecting something to go wrong; I was waiting for the fall. Yet my fear has been pointless, and after eighteen months together that little voice has almost disappeared.
Almost.
I rummage in my handbag to retrieve the note Theo left on my pillow this morning, with the exact address of where I’m supposed to meet him.
‘It’s a surprise,’ he’d insisted. He’s aware it’s Mum’s anniversary today and wanted to do something to honour it, so I suggested we do something fun: drink cocktails, go to a nightclub and dance until the early hours of the morning.
‘Mum loved dancing,’ I said. ‘She used to dance in the kitchen and sing in the shower.’
I told him I wanted to remember all the happy times we’d shared and celebrate her life tonight, because for the first time in five years I haven’t only been thinking about Mum today. This morning, when I woke up in Theo’s apartment and read his note, I realized that time does slowly heal, and that right now, despite everything, I am truly happy.
As I arrive I see no sign of a restaurant or bar. I glance at my watch. It’s past seven o’clock.
Theo’s late. He’s never late.
For a split second I feel uneasy. I wish I knew why he was being so secretive. He knows how much I hate surprises. But my worries vanish the moment I see him across the street, and soon I’m in his arms, welcoming his kiss.
‘Are you ready?’ he asks.
‘Ready for what? Where are we—’
‘Trust me,’ he says, a smile spreading across his face as he holds his hand out towards mine.
I know more than most how happiness can be taken away from us as quickly as it was found. But I know, too, that it’s time for me to let go of my past and trust in my future once and for all. It’s what Mum would have wanted.
I take his hand.
Maybe I’m allowed to be this happy without a catch after all.
2
Peggy
My husband, Tim, was diagnosed with Huntington’s Disease when our daughter Beth was twelve. But that’s not the entire story. His doctor told us that Beth had a fifty per cent chance of inheriting the gene too. We didn’t discuss the implications of this as a family. Tim wanted to. I didn’t.
It remained the elephant in the room.
Today, I lay my bouquet of pale pink roses on their shared headstone.
‘I’m sorry I haven’t visited for a while. I can’t exactly say I’ve been busy. The truth is . . .’ I stop.
I stare at the names of my husband and daughter engraved into the stone. ‘Well, let’s not talk about that just yet. But please don’t think for a minute it’s because I don’t think about you both or miss you. Because I do. All the time.’
Especially today.
‘I’m always asking you to help me out with the crossword, Tim. I can never get the wretched science clues and I still haven’t tried the cryptic. I’m too dim.’ I laugh faintly.
‘Well, what news do I have?’ I mull. ‘Flo’s in New York with Theo; they’ve been dating for well over a year now. To be honest, I don’t know him that well, but they seem happy enough. Remember how I told you he works in branding? Not that I have a clue what that means, mind you. Design, I think, or marketing. I don’t sense he’s strapped for cash: he owns a flat with a private gym in Canary Wharf. Enviable teeth, too, nice and straight.’ I shrug. ‘Not like mine. Or yours, Tim. Well, we didn’t have orthodontists in our time, did we? You’d love his snazzy car. A Jaguar. I think I’ve told you this before, but he’s ten years older than Flo. Thirty-seven. Maybe that’s a good thing, he can take good care of her,’ I say. ‘She’s still an assistant manager at the travel agency. I think she enjoys it, although sometimes I wish she’d . . .’ I stop again, thinking of Tim and how he hadn’t chased his own dream.
‘Well, I think that’s about all my news,’ I wrap up, dreading the long day ahead. ‘I’ll go home and reheat the quiche: leek and bacon, Tim, your favourite. Flo persuaded me to sign up to Netflix. I’m rather addicted to The Crown. The woman who plays the Queen – I forget her name – she’s frightfully good. Sounds just like her. Well, I must be off now,’ I add, looking down at Elvis, my eleven-year-old Jack Russell. ‘Elvis needs his din-dins.’
I look up to the sky, an ominous dark grey that threatens a storm. I take in the rows of gravestones, flowers and toys left behind for their loved ones. No one wants to belong to a club that has lost a husband or a child – or both – and normally there is a certain comfort being here knowing I am not the only member. Yet nothing can take away my pain today, not on the anniversary of Beth’s death.
Don’t cry, Peggy, not in front of them.
I urge myself to go home, but I find myself kneeling on the grass.
‘Oh Beth, what should I do?’
I see that letter again, from the hospital, marked ‘confidential’. The letter that stated Beth had tested positive for Huntington’s Disease. It’s now hidden in an old shoebox in the bottom of my desk, haunting me every single day and night. I promised myself I would tell Flo once the time felt right, but I fear it never will, and the longer I leave it, the harder it becomes.
I’m terrified of telling Flo the truth about Tim and Beth and being seen as the enemy. I’m frightened she won’t be able to forgive me. How can I expect her to when I have kept the contents of that letter a secret for almost five years?
‘What do you want me to do?’ I ask Beth again. ‘Should I tell her? I’m the only person Flo has left now and I can’t let her down. Talk to me. Please, give me some sign.’
I wait, but hear only silence, and the rapid beating of my heart.
3
Peggy
It’s ten o’clock on Saturday evening, the day after Beth’s anniversary. I’m at home watching the news, though I haven’t taken in a single word. There could be an earthquake coming to Hammersmith and I wouldn’t realize until my entire house was reduced to rubble.
I couldn’t eat supper tonight, not even a boiled e
gg. Nor could I concentrate playing cards this afternoon. I made one mistake after another. My bridge partner got ever so ratty when I kept trumping his winners. Thank goodness we weren’t playing for money. It’s lucky I’m not a gambler.
Restless, I lift Elvis off my lap before pacing the room.
I have an unshakeable feeling that something is about to change, that something is in the air.
I stop. Stare at my reflection in the mirror.
After the shock of Beth’s death, I turned grey almost overnight, but I’m rather fond of it now. I shall never dye it. Age is an honour – why try to hide it? Along with the lines and crinkles around my eyes, they tell a story.
My hair is short with a natural curl, though it’s thinning out now. I like it when the hairdresser poufs it up. Flo says I look like the Queen for a day.
I’ve never been much of a beauty, unlike Beth and Flo. Tim used to say to me, ‘You can look positively intimidating, Peg, with that steel in your eyes and your determined old chin that juts out when you’re ticking me off. But I know you’re as soft as they come’.
I pick up the framed photograph of Tim on the mantelpiece. He’s smiling at the camera, a cup of coffee in one hand, a cigarette in the other and binoculars around his neck, dark hair blowing in the wind. It was taken on our honeymoon. They were such happy years, raising Beth, Tim climbing the advertising ladder and I loved my job working in the admissions department of Beth’s primary school in North London.
We travelled each summer. Tim wanted to hike up mountains and camp, even in the wind and the rain. ‘It makes it much more fun, Peg!’ he’d say, gleefully zipping up his hooded raincoat. I remember one holiday he taught Beth and me to windsurf in Cornwall. I couldn’t stand upright on my board even for a second, preferring the comfort of the sand and a Georgette Heyer novel – you can’t beat a good old romance.
I was always Little Miss Cautious and Tim was Action Man, but when I was with him, somehow he brought out the youth in me again.
I look at his faithful recliner in the corner of the sitting room, close to the television. Tim used to sit in it day after day. It was the one thing I couldn’t let go of, even if I don’t sit in it or allow guests to.
If You Were Here Page 1