‘I’ll go back to the hotel for another night and try again tomorrow,’ he said.
A week later Richard was still in Riga and I was making my way, alone, to University College Hospital for the result of a blood test.
‘Can’t you ask them to reschedule the appointment?’ Richard had asked, the previous evening.
I was reading in bed. The space beside me had now been empty for ten days. Richard was more or less confined to his hotel room.
‘They’re going to have to get air traffic moving sooner or later. Could you see if they can delay the appointment for a few days? I want to be there with you.’
‘I know you do but I can’t bear the waiting any longer.’ It was nearly two weeks since I’d gone in to give a blood sample. ‘I just want to get it out of the way. I’ll call you as soon as I have the result.’
‘I really don’t think you should go on your own.’
I could heard concern in his voice, mingled with frustration. I imagined him sitting on the bed in his hotel, the TV on with the sound turned down, a tumbler with a finger of whisky beside the bed.
‘Can you ask a friend to go with you?’
‘Maybe,’ I’d said. ‘But I think I’d rather go alone. I’ll make sure there’s someone I can go and talk to on the way home, if I need to.’
I snuggled down in our bed.
‘Promise you’ll do that?’ Richard was insistent. ‘You shouldn’t be on your own afterwards. Promise me you’ll arrange to talk to someone afterwards. Whatever the result. And I’ll call you.’
‘I’ll let Helen know. She’s the only person I’ve told I’m having the test.’
‘I still wish you’d wait until I get back. I feel so useless being stuck here.’
‘There’s nothing you can do about it.’
We chatted for a few moments longer, then said goodbye. I switched off the bedside lamp and rolled, out of habit, towards the empty space where Richard should have been.
So, there was no one with me as I sat in the waiting room at the hospital, flicking through a magazine, unable to find an article to stop me thinking about the moment that lay ahead – a moment that would be life-changing, whichever way things went.
It was Max who had provoked my change of heart. Whatever I thought about the odds, I had begun to feel they were diminishing with time. I was in my mid-fifties, and if I was going to succumb to the same ugly disease that had killed my mother, it should have presented itself already. So the possibility that I had it felt easier to ignore.
But as Max approached his eighteenth birthday he was looking for certainty. He would be an adult. He didn’t need my permission to have the test: he could make the decision on his own. He was planning to go to university to read sports science. Max played tennis. He was good enough that his coach thought there was a chance he might be selected to play for the country in the Commonwealth Games in four years’ time.
It seemed impossible that such a physical child could possibly have inherited the faulty gene that had been responsible for so much pain and suffering on my side of the family. My children had never met my mother. She had been robbed of the chance to meet any of her grandchildren, though spared the indignity of them witnessing her body slowly losing control of its every function and being taken over by alarming spasms.
They had witnessed my brother Jon’s steep decline, and the thought of my own son having to go through what Jon had was too much for me to contemplate. I felt that his physicality would protect him, although I knew full well that it could not. If I had the gene and had passed it on to Max, nothing he did and no amount of innate physical strength would protect him against the disease.
He was stacking the dishwasher one evening after dinner when he brought the subject up. It was just the two of us, tidying the kitchen in a quietly companionable way.
‘Mum?’ Max tried to squeeze a saucepan on top of some plates.
‘Yes?’ I expected him to ask for money or if he could stay out late.
‘I’ve been thinking.’ He was still struggling with the saucepan, adjusting it to fit into the machine better and to avoid looking at me directly.
‘What’s that, then?’
‘When I’m eighteen I want to have the test,’ he said, standing still.
‘What’s prompted that?’
‘I’ve just been thinking about it.’
‘Is it after seeing Jon?’ My elder brother was deteriorating fast.
‘No. Yes. Well, sort of, I suppose, but not just that.’
We’d visited Jon and Anne last week. Jon was in a wheelchair and could hardly communicate any more. I could tell that Max was appalled by his uncle’s condition: he had to be helped with everything, even on to the toilet.
Lottie had taken it more in her stride. She’d sit opposite Jon and feed him, chattering away as she wiped his chin and paused to clear his mouth with her fingers if he started to choke. It didn’t appear to faze or scare her.
But it alarmed Max, more than he let on. Of course it did. How would he deal with the possibility that he might end up in the same position?
‘I’ve been thinking about uni. I still want to read sports science and I could maybe become a sports psychologist but it seems pointless going down that route if …’
‘You’ll still have time,’ I said. ‘Even if … Before …’
Neither of us wanted to put the possibility into words.
‘But I have choices now and I want to make the right one. If I’m going to end up like Uncle Jon, I want to know now.’
I took a dishwasher tablet from the cupboard under the sink and didn’t reply immediately. I pictured myself at that age, coming home from a year abroad, sitting in my own parents’ kitchen and being told that the strange symptoms my mother had been showing for several years now had a name. That there was a reason for her mood swings and muscle spasms, that there was no cure but, worse, it was genetic, it ran in the family, and the likelihood that Jon, Cathy and I carried the same gene was fifty–fifty. I was on the cusp of adulthood. The world should have been opening up to me; instead it seemed to be shrinking.
I remembered sitting with Jon in the kitchen, after my father had helped Mum up to bed, and trying to get my head around it all. I hadn’t had the choice that Max had now. There was then no test to confirm or not the presence of the markers that would tell me if I would suffer the same fate as my mother.
The only option open to me was to learn to live with the uncertainty, and that had informed my character. I had become someone who was perhaps more able than others to go with the flow, but Max, from an early age, had liked to know, as far as possible, how things were likely to pan out.
‘Will the tide be in or out when we get there?’ He would pester us with questions in advance of an outing. ‘Will we put our rugs by the dunes? Will we swim before lunch? What sandwiches did you make?’
He didn’t like surprises – diversions on the roads, museums that were closed when we got there or restaurants that had changed their menus and scrapped the dish he’d decided to have as soon as we booked a table.
I was not surprised that Max wanted to take advantage of the test, which had been developed when he was young, even if I would rather he did not. It was my decision, mine and Richard’s, not the children’s, to make when the test was first developed and I had decided I didn’t want to know, that I’d rather carry on in the hope that everything would be okay than be told, for certain, if it would or would not.
But as they grew older I began to worry whether the decision I still thought had been right for me was actually right for them.
From a fairly young age, Lottie and Max had watched Jon’s health slowly deteriorate, knowing exactly what was causing it. When they were in their early teens we had explained there was a chance it might affect them too. I had been ignorant of that possibility for longer and had watched my mother believing, until I reached adulthood, that it was nothing, that she would get better, never thinking it might also affect me.
‘I’m sorry, Mum,’ Max said. ‘I didn’t mean to talk out of turn about Jon.’
‘I know that, love.’ I looked at him: such a beautiful boy.
He was as tall as Richard now and solid but with deftness to his movements that belied his strength. He looked well too, tanned from the time he spent outdoors. And the blond highlights in his hair, which were less noticeable in winter, had begun to show again in the early spring sunshine. It seemed impossible that he would not always be so full of vitality.
‘It may not be necessary for you to have the test,’ I told Max. ‘You know the symptoms usually begin before people reach their mid-fifties and I haven’t shown any signs yet.’
‘But they could start after?’
‘They could, but it’s unlikely.’
‘I just want to know,’ Max said. ‘I’ve thought about it a lot. I’d rather know before I decide whether or not to go to university.’
‘But even if I have the gene, even if you do, that shouldn’t affect your plans,’ I said. ‘You can still go to university. It shouldn’t stop you doing what you want to do now.’
That was the mantra by which I’d lived my adult life but it wasn’t the one my son wanted to live his by.
‘Yes. But I still want to know. I need to know.’
‘Okay.’ If that was how he felt I couldn’t argue with him.
It was how Jon had felt too. I’d never wanted to know. Even now when I believed the test result was likely to come back clear, I’d still rather not.
‘I’ve done loads of reading on the internet, Mum,’ Max said. ‘And I’ve talked to other kids online who’ve had the test. They all say it was the right thing to do.’
‘Let’s talk about it more when Dad’s back.’ I stalled him.
‘I’m not going to change my mind.’ Max shrugged and picked up his iPod.
‘Are you off up to your room?’
‘Yeah. I know this isn’t easy for you, Mum, but it’s what I want.’
‘Okay, love.’ Although I didn’t tell him just then, I knew that meant I’d have to have the test myself. If I had it and was clear then Max and Lottie would know that they were too. I didn’t want Max to have to go through all the genetic counselling sessions and the test if I could spare him by having them myself first.
And if I was positive? Then the children would have to decide what they wanted to do.
So today I’m in the waiting room at University College Hospital, having already been there for three counselling sessions.
‘Why have you decided to have the test now?’ the counsellor had asked on my first visit. I had explained that my son needed to know and I’d take the test so that if I was clear he wouldn’t have to.
‘That’s quite common,’ she said, and outlined implications I’d already been through in my mind more times than she could possibly imagine. ‘How do you think you’ll feel if you’re clear?’ she asked.
‘I don’t know.’
You’d think I’d be overjoyed but I didn’t know how I’d feel. I’d lived with the uncertainty for so long. It was part of me. To have it taken away from me, to know that I’d escaped something that was blighting my brother’s life, something that had killed my mother, felt wrong. I might feel lost without it, guilty for having survived.
But I’m about to find out. One way or another.
‘Ivy?’ The counsellor is approaching me. ‘How are you?’ She smiles and I try not to meet her eye.
She must already know. I don’t want her to give anything away. ‘Nervous.’ I follow her into the consulting room.
‘Is your husband not with you today?’
I sit down and explain that he’s stuck in Riga.
‘And you’re sure you don’t need someone to be here with you?’ she asks.
‘Does that mean it’s bad news?’
‘I’m not going to discuss that yet. I want to make sure you’re all right with being here on your own. We could reschedule the appointment.’
‘I’ve arranged to meet a friend afterwards. She lives nearby. I said I’d call in on her. She’ll come home with me if I need her to.’
‘Okay, if you’re absolutely sure?’
‘I am. Now that I’ve started the process, I just want to get it over and done with. I can’t bear to wait any longer.’
‘All right,’ she says, and reaches for a folder on the desk with my name: ‘TRENT, I.’.
It reminds me of the nametapes I used to have on my clothes at school.
She opens it and tells me the result of the blood test.
I walk out of the consulting room and down the stairs of the hospital on autopilot. I go out into the atrium, where there is a Costa coffee shop. I join the queue and order a double espresso. I take it to a table in the corner and sit down opposite a man I don’t even begin to register.
I may say, ‘Do you mind if I sit here?’ but I don’t remember.
It’s a blur. Maybe I drink my coffee. Maybe I don’t touch it. I have no idea.
The next thing I know the man opposite is asking if I’m all right.
It’s only when I try to answer that I realize I’m crying. I’m not even crying quietly. I’m crying huge, undignified, uncontrollable sobs that can’t possibly leave anyone in any doubt as to whether I’m all right or not.
‘Here,’ the man says. ‘Have this.’ He’s handing me a tissue and he’s coming round to my side of the table and he puts his hand gently on my shoulder. ‘You’ve clearly had some sort of difficult news,’ he says. ‘Is someone with you?’
I shake my head.
‘Is there someone I can call for you?’
‘No. It’s okay.’ I take a deep breath and try to pull myself together. ‘I’ve just – I just –’ I can’t begin to explain. ‘I should be getting home.’
‘Where do you live?’ he asks.
‘Highgate. Not far from the Underground. I’ll catch the Tube.’ The practical details of the journey divert me enough from the emotion, which is overwhelming me. I focus on them. ‘I’ll take the Tube from Warren Street. It’s easy.’
‘I don’t think you should go on the Underground,’ he says. ‘You’re not in a fit state.’
And the next thing I know I’m standing on the pavement outside the hospital and the man, this kind stranger, is hailing me a cab. ‘Highgate,’ he says to the driver, as he opens the door for me to get in, and I see him hand over a couple of notes. ‘That’ll cover it, won’t it?’ he asks the cabbie.
I’m fumbling with my bag, trying to unzip the pocket that contains my purse but my hands are shaking. I can’t seem to open it.
‘Don’t worry. You just make sure you get home safely.’ He leans though the door and does up my seatbelt, as if I was a child.
‘But I can’t –’ I begin.
‘You’ve had a shock,’ he says. ‘You’ve clearly had some upsetting news. I know what that’s like. I just want to make sure you get home safely.’
Only then do I look at him properly for the first time. He’s tall and around my age with a kindly face and a thick head of unruly salt-and-pepper hair. ‘But I have my purse,’ I say, still unable to locate it.
‘Please don’t worry,’ he says, takes a card out of his pocket and hands it to me. ‘If you feel you need to pay me back then this has my address and number. But it’s really not necessary.’
‘Thank you.’ I put it into my pocket. I give the cab driver Helen’s address, and when we get there, he hands me change, a lot. The stranger must have given him far too much money.
‘Oh, Ivy,’ Helen says, her eyes welling when she opens the door and sees the state I’m in. ‘Come in. Come and sit down.’ She leads me to a chair in the kitchen. ‘It’s bad news?’
‘No.’ The floodgates open once more. ‘I’m clear. I don’t have it. The kids don’t have it.’
‘Oh, thank God,’ Helen says. ‘When I saw you, I thought the worst. I’m so happy for you all.’
But she cries too, and I think she unders
tands why I can’t stop. It’s as if everything I’ve been bottling up all my life is coming out now.
‘Have you called Richard?’ Helen says.
‘No. I’ve been in too much of a state.’
‘You must let him know. I’ll put the kettle on, or do you want a drink?’
‘A cup of tea would be lovely.’
‘I’ll make it while you to talk to Richard.’
He’s delighted, of course, and frustrated he can’t be with me.
‘I should go now,’ I say, when we’ve talked for a while. ‘I need to get home and tell the children.’
After Helen’s made the tea, she asks me to try to explain to her the mix of emotions I’m grappling with.
‘It’s really hard,’ I say, ‘but I feel a strange sense of loss. I know how ridiculous that sounds. I’ve just been given a new lease of life. But I’ve got so used to living the way I’ve been living that I’m grieving for an affliction I’d learned to live with.’
‘I think I understand,’ she says kindly. ‘It’s a bit like kidnap victims missing their kidnappers when they’re released.’
‘I suppose so. And of course it’s the best possible news. I don’t know what I’d have done if they’d said I was positive. But I feel bad for Jon. It doesn’t seem fair. I don’t know how I’m going to tell him and Anne.’
‘Give it time,’ Helen says. ‘You don’t have to tell them just yet. Are you going to see the counsellor at the hospital again or is that it now?’
‘There are follow-up sessions. I didn’t think they’d be necessary, if I was clear, but I guess the state I’m in means they are.’
‘She can probably help you decide when’s the best time to tell your siblings and how.’
‘You’re right,’ I say. ‘And I’m sorry. I know I’ve just pitched up and cried all over your kitchen but I really need to get home.’
‘Shall I come with you?’
‘It’s really kind of you but I’ll be okay. Thank you.’
Helen gives me a big hug and kisses me. ‘I’m so relieved for you,’ she says. ‘Let me know how you get on with the kids.’
They’re thrilled – relieved and thrilled. Lottie cries and Max puts his arm around me and says we should celebrate.
Ivy and Abe Page 9