In the morning, I feel relieved that I no longer have to fight to fall asleep. I feel stronger and ready to face the day ahead.
Darkness can often rob you of hope. Light gives it back.
I find James in the kitchen. He picks up his house keys and bike helmet.
‘I hope he calls,’ he says, kissing me on the cheek before I hear the front door shut and the flat falls deathly silent. It makes me realize that I don’t want to spend any more time on my own here.
Without a job, the day stretches out in front of me, like a never-ending road. However much I’ll miss James and Granny, I need to book my flights and begin my new life. I need to make Theo see this doesn’t have to be the end. I’m determined to fight for us.
For the rest of the day, I keep myself busy finishing off my packing and looking into the best flights over the next few days. I go for a long walk to clear my head and find a café in Chiswick to have lunch, though I can hardly eat, spending every minute instead checking my emails and staring at my mobile, stopping myself from calling him back.
Theo keeps me waiting until the evening. James is home and we’re cooking supper together when at last he rings. I leave the room promptly, James mouthing ‘Good luck’.
‘I’m sorry it’s taken me so long,’ Theo says. He sounds calmer, which is a good start.
‘It’s fine, you needed time.’
‘I love you, Flo.’
‘I love you too,’ I say, the relief immediately overwhelming.
‘But you shouldn’t have lied to me.’
My fear returns instantly. ‘I know, but—’
‘This can never work if we can’t be honest with one another.’
‘I know, and I feel terrible, but I’m telling you the truth now.’
‘Is there anything else you’re hiding?’
‘That’s not fair, Theo,’ I say, though I feel another stab of guilt as I remember the night I’d spent drinking, ending up at Nate’s flat, thinking I’d lost my ring.
‘How can I trust you?’
‘You can, Theo, you know you can,’ I say, sensing this isn’t what it’s really about. ‘I need you, Theo. I need us to be strong. There is such a good chance I don’t have the gene.’
‘But what if you do?’
‘We’ll get help and support.’ Please say something positive.
Yet his silence says it all.
‘You should have told me before,’ he repeats, using his only weapon of defence to end our relationship.
‘You’re scared, and I get that, so am I, but maybe you can come with me to my first genetic counselling appointment—’
‘Flo, I can’t do this. I can’t.’
‘I’ll fly out. We need to see each other. We can’t throw away what we have over the phone. Don’t we owe it ourselves to at least talk, face to—’
‘But no amount of talking can change the facts. If you inherit the gene I can’t look after you, Flo,’ he confesses. His tone is brutally direct.
I feel a lump in my throat. ‘But I might not.’
‘I can’t take that risk, don’t you understand? It would only be hovering over me, over us. All the time I’d be wondering when it’s going to happen, when you’re going to get symptoms. And what about us having a family?’
‘Once we get advice—’
‘Flo, I can’t. I’m sorry. I can’t be the man you want me to be.’
‘Don’t, Theo,’ I beg tearfully. This can’t be it. I feel as if my entire life is crumbling into pieces around me.
‘I think it’s better to be honest right from the start.’
‘But I love you.’ Doesn’t that count?
‘I’m sorry Flo. It’s over.’
‘No Theo, please.’
‘I’m sorry,’ he says quietly.
The line goes dead.
Numb, I return to the kitchen. ‘Flo,’ James says, rushing towards me, before I throw my mobile against the wall and scream.
Soon everything is blurred.
I can’t stand up. My legs feel weak.
Soon it’s dark and quiet.
It’s over.
My entire life has stopped.
44
Peggy
It’s two days after Flo spoke to Theo, and I’m at James’s flat preparing her breakfast in the kitchen. She won’t want to eat, but I have to keep trying.
James went out for a run the moment I arrived this morning and has been gone a good few hours. It’s not easy for him, all of this. I’ve told him he mustn’t take days off work or cancel seeing his own friends. His life must go on. But it must be difficult living with someone at the end of his corridor who has completely shut down.
It’s hard to ignore a closed bedroom door when you know your friend is suffering behind it.
They say you only see people’s true characters in a moment of crisis. If you were on a bus and a person pulled out a knife, would you rush to the defence of others or would you get off the bus as quickly as you could?
I’m angry with Theo for ending it so abruptly, but I suspect he’s not the only person who’d walk away. It is a daunting prospect knowing someone you love could possibly have HD, and I don’t hate him for the choice he’s made. I only hate how it’s made my Flo feel. I wanted to believe so much, for Flo’s sake, that Theo would stand by her, even if, deep down, I feared it would end this way.
Gently, I open her bedroom door and place the tray on her bedside table. She’s lying on her side, motionless. Her eyes are open, but she is little more than a shell. A body.
Something has died within her; some light has gone out.
For the past few days, I believe she has been in deep shock, everything finally catching up with her, including now the end of her relationship.
‘Good morning, darling,’ I say. ‘Try to eat something, even half a piece of toast. I bought you some special honey in a comb, the kind you love.’
‘Later,’ she murmurs.
‘Here, you need to drink.’
I help Flo to sit up in bed, rearranging the pillows, and to my relief she takes the mug of hot ginger and lemon and has a few sips.
I walk over to the window to open the curtains. The sun is shining, the sky a clear blue.
‘Don’t,’ she says, as if frightened to let any light into the room.
Should I open them anyway? Isn’t it worse to be plunged in darkness? Should I be firmer with her?
I leave the curtains shut, before asking if she needs anything else.
She shakes her head.
I perch on the edge of her bed and hand her a small quarter of toast. ‘If I eat this, will you let me sleep?’ she says. ‘I’m so tired, Granny.’
‘I know.’ I stroke her hair, just as I used to do with Beth when she was a little girl. ‘Why not try to get up later on today? We could go for a short walk around the park with Elvis.’
‘Maybe.’
I understand how cruel Theo’s rejection must have felt, but thank goodness she is here with James and me. Maddie is also coming to stay. Her train arrives tonight.
I’m relieved she didn’t fly out to break the news to him. The idea of her being rejected in a city miles away from home is unthinkable.
‘I’ve got nothing, Granny,’ she says. ‘Nothing.’
I reach for her hand, wishing I could think of the right thing to say, or something that would make her feel better. ‘That’s not true. You’ve got your friends and you’ve got me.’
When Flo stares up at the ceiling, asking ‘What’s the point of going on?’ I realize I am out of my depth, since indifference is even harder to deal with than anger.
*
It’s late afternoon when James arrives back home and finds me in the kitchen, preparing a chicken salad for supper. ‘Did you run a marathon?’ I ask, chopping some tomatoes.
‘My legs feel as if they did. It’s hot out there.’ It’s the middle of August and for once we’ve had a decent summer’s day. He opens the cupboard, picks up a glass. ‘I ha
d lunch with Stu. Didn’t you get my text, Granny Peg?’
‘I haven’t checked. I only keep my mobile on in emergencies.’
‘How is she?’ he asks.
‘Much the same,’ I reply, hating killing that flicker of hope in his eyes. ‘But I was given some good advice,’ I go on, before the buzzer rings. I pick up the intercom, telling James it will be Ricky. ‘He’s a nurse. Make yourself useful,’ I add, ‘put the kettle on. He likes Earl Grey, one sugar.’
‘Yes, ma’am!’ he calls back.
When I open the door, Ricky bounds inside, almost tripping over the rug in the hallway. He kisses me on both cheeks before I lead him into the kitchen.
‘All right, mate,’ he says, shaking James’s hand so hard that I’m certain he’ll have a bruise in the morning. ‘I’m Ricky. You’re the vet dude, right? Cool bike outside.’
James can’t help but grin as he looks up at this man, tall enough to be a professional basketball player, taking in the hat, the dreadlocks, the white T-shirt with an image of Bob Marley printed on the front and the neon-coloured trainers.
‘How’s Flo?’ Ricky asks with concern.
‘Not good,’ James replies. ‘It’s as if her whole body has gone into shock.’
Ricky nods. ‘That can happen, delayed trauma.’ He takes a notepad out of his work briefcase. ‘Well, I went online, Peggy, as you asked,’ he says. ‘She’s a bossy old thing, isn’t she?’ he directs at James, ‘and there’s a lot of info out there on research and drug trials. This looks interesting.’ Ricky shows us both an article he printed out about a drug – with a name I can’t even pronounce – that can be used to help control the jerky dance-like movements that Tim used to have.
‘This is great,’ James mutters, scanning over the piece, ‘but I’m not sure Flo’s going to be interested in reading any of this right now. She needs some medicine to mend her broken heart.’
‘If only I could invent that,’ I say.
Ricky adjusts his hat. ‘What I think she needs more than anything is a goal, something to get out of bed for, right?’
I agree. ‘That’s a good idea. She needs some fresh air.’
Ricky shakes his head. ‘She needs a focus, a real project.’
‘Not working probably doesn’t help,’ I reflect, recalling how Flo spent weeks in bed after her mother died, until I forced her to get a job. ‘She’ll need the money, too.’
‘Work is good,’ Ricky muses, ‘the last thing she needs is hours alone in this flat, and we all need to earn, but it’d be good if she had something outside of work, too, something more than just earning a living, something that’ll make her believe life is worth fighting for. My music is a passion, you know? My band, we’re only amateurs, right, as Peggy will no doubt tell you.’
‘I take my hearing aids out,’ I whisper to James.
James and Ricky laugh. ‘But that doesn’t matter,’ Ricky continues. ‘My guitar has helped me through some serious dark times.’
I tell James Ricky lost a child to cot death.
‘I’m so sorry,’ James says.
‘Thanks.’ Ricky pats him on the shoulder in a fatherly way. ‘These things happen, right, and you never think you’ll be able to pick yourself up off the ground, but somehow you do.’
‘I wouldn’t know,’ James responds with refreshing honesty. ‘I’ve never had to deal with anything like that, or what Flo’s going through.’
‘Flo said she wanted to do something she thought she’d never be capable of,’ I reflect, thinking back to our conversation about bucket lists.
‘The bigger the challenge the better,’ Ricky says, ‘she needs something to get herself up and running again.’
‘I’ve got an idea,’ James says, a smile slowly spreading across his face. ‘Ricky, you’re a genius.’
45
Beth’s Diary, 2000
I haven’t written in my diary for months because I’m happy. Yes, happy! It’s hard to believe it was almost two years ago when Amanda opened the test results and said to me, ‘You’re positive’. The most surreal and life-changing moment, and yet my life hadn’t changed at all. I left her office the same person, I drove home the same person and I cooked Flo’s supper as I do every single night.
But I knew the person I would become.
After Graham walked out on me, I went straight to bed.
And if it hadn’t been for Flo, I’m not sure I’d have ever got up again.
But I did.
As Amanda advised I gave myself time to grieve and adjust, time to be kind to myself, and gradually darkness gave way to light. I realized my life hasn’t stopped. If anything, I’m the happiest I’ve been for years.
Graham came back to the house a few days after that fateful night. He was calmer this time, loving even. I didn’t beg or plead with him to stay, as I knew, deep down, it was over. We both cried when he handed me his set of house keys, saying he’d pick up the rest of his stuff when Flo wasn’t at home.
What hurt the most was when Flo asked me if Graham had left because he hadn’t liked her bridesmaid dress. Was it something she’d done? I almost told her there and then about the HD – I nearly blurted it out – but I’m so relieved I didn’t. I must find the right time.
I’m still certain that taking the test was the right thing for me. In so many ways it has lifted the burden of uncertainty off my shoulders. Now that I know, I’m determined to see the time I have left as a gift, and that has been truly liberating. I’m not going to put anything off until tomorrow, since there is no promise of tomorrow. It’s the moment that counts.
About six months after getting my test results, when I began to feel human again, I called Terry Simpson, the gallery owner in South Kensington who discovered me at my degree show. I reminded him he’d asked me to do some work for him, all those years ago. I asked if he remembered me, and if he was willing to give me a second chance.
When he suggested I visit his gallery to show him my latest work, I warned him my style had changed.
‘I wouldn’t expect anything less,’ he replied.
I have become obsessed by shapes and textures in my art and have begun to make the oddest things. Flo came home from a sleepover the other day, only to find me making a ceramic egg out of broken plates.
‘What’s that, Mum?’ she’d giggled. ‘That’s weird, even for you.’
But Terry didn’t laugh when I visited him with my portfolio, describing how I love to work with things that others would put straight into the bin, things that are no longer useful: broken china, jewellery, feathers, rusty old nails, damaged shells and bones.
‘I find beauty in things that can be easily overlooked,’ I said, thinking about Mark, and how he always used to teach us to look at everything around us, and breathe life into all we see. Art is about storytelling, he said.
The following day, Terry called to say he’d love to give me my own private show. I screamed with joy and started dancing around the kitchen table, not even noticing Flo and Maddie enter the room until they laughed and fled as quickly as they’d come in.
‘She’s bonkers,’ I overheard Flo say.
‘Not as mad as my mum,’ Maddie had replied.
Anyway, I was so happy that I decided to call Mark. Mark is always the first person I want to talk to when I get good news. He was thrilled, and suggested we go out for lunch to celebrate.
He and I have continued to stay in touch. He wrote to me shortly after my father had died, saying he was thinking of me, and would I like to meet for a coffee. We hadn’t seen one another for almost five years, not since our painfully awkward exchange, when I told him I was pregnant with Flo and he wished me luck.
I felt nervous, but the moment we met, it was as if nothing had changed.
‘Teaching is an admirable profession,’ Mark said when I told him my life wasn’t quite so fancy as some of the other students I’d lived with, who’d gone on to own galleries and work in Paris and New York.
My ex, Nick, runs his own g
allery in Berlin.
‘Only the very best teach,’ he claimed, making me smile.
I’ve met his wife, Eve, and she and Mark have two boys, Anthony, who is eighteen months younger than Flo, and Ben who is seven. I like Eve.
Soon after Mark and I met for coffee, he suggested I pop over for some supper. I understood why she wanted to meet me. I wouldn’t like my husband regularly meeting up with a former student. Initially, she was on guard, it felt rather awkward, everyone on their best behaviour, but as the dinner progressed, and more wine was poured, we loosened up. I told her about the support Mark had given me at college with my father’s HD, and how I too was at risk. I wanted to be as open and honest with her as possible, and over the past few years we’ve become good friends.
As to relationships, I have decided not to put myself through rejection again. I can’t have another man abandon Flo and me. Both Mark and Eve keep on telling me I mustn’t be cynical about love and give up on finding the right person. I’m thirty-one; I’m still young with so much to give, they say.
Amanda tells me she wishes I’d listen to my friends. She sees men and women with HD marrying and having families all the time, yet I know it takes one hell of a person to do what Mum did for Dad. I reassure them I’m happy focusing my energy on Flo and my career. I have goals, and that’s what matters.
Since my first exhibition with Terry, and through word of mouth, I receive regular commissions now. I don’t earn a fortune, but with my teaching salary it’s enough.
Mum owns one of my paintings, a landscape of Burgh Island in Devon where she and Dad honeymooned. She jokes, says I get all my talent from her, before she gives me a hug, which I know is her way of saying how much she misses Dad too, and that he’d be proud I’m finally following my dream.
46
Flo
I sit up in bed and throw off the covers, Mum’s diary falling on to the floor. Mum didn’t lie in bed wishing her life away. She got up. She made plans. She rebuilt her career.
I’m not going to put anything off until tomorrow, since there is no promise of tomorrow. It’s the moment that counts.
If You Were Here Page 15