by Tim Parks
Left alone, I find myself trembling and truly truly appalled. Resting against the mantelpiece, I pick up a dusty Hummel of a small boy and two yellow birds sitting together on a country fence, their mouths wide open in song. How my mother loves these quaint images of innocence and happiness. An ice-cream van tinkles in some suburban distance, exactly as twenty years ago. And I draw breath. I try to steady myself. I feel deeply justified in going for the old man, yet can’t escape the terrible ugliness of what I’ve done. Have I ever hit anybody before? Never. What am I sinking to? Yet the paradoxical pattern of this experience – justification followed by ugliness – is all too familiar (didn’t I feel much the same after cheating on my wife: justified, ugly).
When Mother comes back I burst into tears in her presence for the first time since childhood.
‘We were so so happy,’ I weep. ‘We’d really got so close together. Why did it have to happen? Why?’
Mother hugs me and repeats over and over: ‘Bless you, my dear heart, bless you, bless you, bless you, my dear heart.’
Later, driving home, I reflect that of course I only let rip with Grandfather so as not to have to do so with Mother. It was an easy way out. For in many ways it is more her fault than his. A generation on, it was she should have known what to do, her I should have been shouting at. Yet I know I never will.
I get home, transfer a Heinz curry and rice from freezer to microwave, and while that’s cooking look up Christensen’s syndrome in the medical book I bought. Of one thousand eight hundred expensive pages, my baby girl’s condition merits only six lines:
Rare syndrome of varying intensity involving multiple disabilities and/or deformities. Cases differ widely and little is know of causes. Affects only females, but may (or may not) be passed on by males. Possible manifestations: spasticity of lower limbs, malformation of major articulations, cerebral palsy (rare). May occur together with, or be mistaken for, Down’s syndrome.
The phone rings. My mother’s voice speaks breathily: ‘Something’s happened to Dad.’
She found the old man upstairs on the floor by his bed unable to speak or move.
‘Dead?’
‘No, he opens his mouth, it’s just he can’t speak.’
‘Stroke,’ I say. ‘You . . .’
‘Oh, sorry, that must be the ambulance already, I . . .’
I say to phone me just as soon as she’s got any concrete news or needs help. Then I put down the phone and eat. Going about all the routine domestic tasks that evening, washing dishes, wiping surfaces, I numbly wonder whether Grandfather will manage to tell the powers that be that I beat him, or whether they themselves will find signs of violence. I feel nervous, faintly horrified, but there’s a growing sense of grim satisfaction too. Surely now he will be forced into a home at last. I have liberated my mother. It is not a crime. On the contrary I have done something good.
A precedent perhaps.
Four Thousand to One
What happens over the following months is that Shirley gives up entirely while I throw myself heart and soul into saving the situation, into finding, no matter how far I have to go, how much I have to spend, some cure that will reverse our little girl Hilary’s condition. My reasoning is that they can’t know for certain that her brain is in the same condition as Mavis’s. The medical books, when they mention it at all, say the syndrome is entirely unpredictable in terms of severity and areas affected. No one can really know how she will develop. She might have a severe physical handicap and a brilliant mind, for example. So perhaps, I think, there is still a chance for our daughter and for us. And if there is such a chance, however remote, it is my duty to go for it.
Shirley comes home after a month in hospital. She refuses to speak about Hilary’s condition. She avoids wheeling her out where she will be seen by neighbours. She looks after her carefully but clinically, never complaining how difficult it is to dress her with her stiff joints, never making even the most remotely relevant comments. She is efficient, tight-lipped, mechanical, beaten.
‘Please don’t tell me,’ she says quickly, when I begin about something I have read, some information gleaned. ‘Please, I don’t want to know, okay?’
I say how important it is for us to communicate, pull together.
She says: ‘When a tragedy occurs there’s no point in pretending it hasn’t.’ And she says I was right all along, we should never have had children, they’re too risky. Never never never. She could have found a job at another school, or in business, in the end she could have done it. We could have been happy. It is all her fault.
But I say no, she was right. And I tell her how much I want a healthy child now. It was just sheer bad luck.
‘Bit worrying,’ she remarks, ‘when we both start telling each other the other was right.’ She looks up at me from plucking a thread on her blouse and half smiles.
‘Everything will turn out okay,’ I say. ‘I was talking to a specialist who . . .’
‘Please, George.’
Weeks pass. We don’t make love for the unspoken fear of somehow generating another Hilary. The geneticist has said a one in four chance. Add that to the, what, thousand to one chance of getting pregnant despite contraceptives and you’re talking about four thousand to one, the kind of odds you might never win at, but could perfectly well lose at. Lying in our bed sometimes, watching the evening shadows that stretch and flit, I will be urgently aware of our extraordinary isolation, from each other, from the rest of the world.
Still, I resist the temptation simply to work late at the office and absent myself from family life. When I am at InterAct I work hard, I plunge into work as into a warm healing bath, I seem to reach intensities of concentration, speed of operation, I never dreamt possible before, but I always make sure I’m home in good time. I think, we will come through even this, I will save little Hilary. I will. And I am terribly tender with the little girl, changing and feeding her myself since Shirley lost her milk almost immediately. Sometimes I’ll be up half the night, heating bottles in the microwave. I look into her small, slightly fish-like blue eyes and wait, hope for the first smile.
Many men, I’ve heard, simply refuse to look at a handicapped child.
Of the relatives, my mother and Shirley’s brother Charles are assiduous to the point of irritation. Mrs Harcourt on the other hand pays ever rarer visits during which she will talk eagerly about proportional representation and the advantages of using faster film, before making for the door with the near panic of someone leaving a sinking ship. Mr Harcourt occasionally phones offering advice about specialists suggested by his professional friends. He will look after the consultancy fees. Peggy brings Frederick over at weekends and offers to babysit Hilary so that we can go out together. Shirley invariably refuses. She doesn’t want to go out. She wouldn’t know what to do.
So that one evening I say, does she mind then, seeing as she has company, if I go out myself? On the Finchley Road I phone Susan Wyndham, my contact at Brown Boveri, a small girl, almost plain, but with a certain glint in her eye. My wife is away, would she like to go out for a drink? And in a Hungarian restaurant off the Edgware Road we talk very seriously and theoretically about relationships and faithfulness and fun and what life is for. Discrete loudspeakers are playing mazurkas. With make-up and washed hair, she looks better than I’m used to seeing her and has a knowingly wry smile as we wander around for a while under thin rain looking for a decent pub. When I kiss her below her Willesden flat, she comes back so fiercely I’m taken aback. But afterwards she cries and pushes her face into her pillow and says she has a fiancé who had to go to Australia for a year with his company and she’s been faithful to him for nearly ten months. Why, oh why did she let him down now?
When I get home it’s almost one. Charles and Peggy are arguing heatedly about feminism, which Charles is fiercely defending and Peggy fiercely attacking. Shirley has gone to bed with a couple of Mogadon. Hilary has obviously shat and they are ignoring the smell. I change her and re-make h
er bed. I sit on the loo and stare at the wall for perhaps fifteen minutes, then grit my teeth and go downstairs to propose Glenlivet all round.
Charles says: ‘Of course, it’s not too bad while she’s still a baby like any other. It’s when she grows up that things’ll really get heavy.’
Please
Shirley has always been against an operation, or at least not for it. But the doctors tell us that if the child is ever to walk something must be done. And if nothing else there will be the aesthetic effect.
However, they need both our signatures.
My response, being first and foremost a doer is, okay, try it, go for it, cut. Shirley, who, for all her bubbliness and energy when she’s up, has a fundamentally passive streak to her, is not convinced.
‘What’s the use?’ she says.
‘What do you mean, what’s the use? We’ve got to try everything.’
‘But the girl is like that. I don’t see what’s to gain by chopping and changing her. It won’t work.’
I ask her how can we go on, how can we go on with our lives if we don’t believe the child can be made normal?
‘You always set such store by normality,’ she says.
‘I should hope so.’
‘We’ve lived without it before one way or another.’
I say there’s hardly any point in bringing that up. That was an aberration. We’ve got over it.
‘And this is a tragedy.’
‘Right, so we’ve got to get over this too.’
She finds her wan smile. ‘George, you don’t “get over” tragedies. Haven’t you got it into your head yet that this has really happened?’
I remark that we would serve the little girl better if we argued about the matter logically without attacking each other. Anyway it is she, it seems to me, who is refusing to find out what’s happened or to look into it in any way, while I’ve been all over the place consulting authorities and books and talking to specialists and so on.
‘But it’s not the kind of thing you need books and experts to help you understand. It’s simple, you just sit and look at it.’
We stare at each other. Her face is drained, thin, but with a kind of luminous serenity to it. Which is new.
‘They said if they did the operation she might be able to walk, they might be able to fix everything.’
‘They said not to raise our hopes. You can’t refuse to live with things just because they’re not normal.’
‘We were so together, Shirley,’ I plead, ‘before she was born. We were so happy. Weren’t we? If only they can sort her out, everything will come right between us.’
‘It’s a chimera.’
‘But how can you know?’
‘Because they’d never have offered an operation if you hadn’t bothered them so much.’ And she says: ‘I don’t want her hurt any more than she is now. God knows what they’ll do when they start cutting. She’ll be strapped up for months. Nor do I see why we have to operate on her to improve our relationship. Which is fine as it is.’
My mother comes round and over tea and angel buns, brought in a biscuit tin I remember from earliest childhood, she begins to say what marvellous marvellous things surgeons can do these days. She’s been praying so hard and it’s true that the Lord is capable of revealing himself through science, His healing powers. She is sure it will come good.
Shirley asks how Grandfather is and says I really ought to go and visit him.
I phone Mr and Mrs Harcourt, Charles and Peggy, and get all of them to put pressure on Shirley. Everybody is on my side. Everybody supports the quick fix-it drama of orthopaedic surgery. Intervene, is the general chorus, do something about this wrong child, heal her, quick. And they are right. If the doctors are offering hope, who are we not to grasp at it? What kind of life could I have without it? Every time I come face to face with Shirley’s entrenched fatalism, her ‘accept, learn to live with it’, I find myself feeling quite sick. I know I’ll break down. I know that this is not my life.
The day before the operation Hilary smiles for the first time. She smiles and keeps on smiling. She beams from an apple-red complexion lying in a carrycot on the living room sideboard. The sight of this personality shining out of the so slightly strange face is at once immensely exciting, and distressing.
The same afternoon Mother phones to say that Grandfather is speaking again. They are moving him to a rehabilitation ward. ‘He asked after you.’
‘Oh really. What did he say?’
I notice that I’m not flinching at all.
‘Just your name. He’s not very coherent. Oh, and he asked for his pipe of course.’
‘Are you pleased?’
‘What do you mean? Yes of course I’m pleased. I was thinking perhaps it’s a good omen for Hilary’s op, love.’
Occasionally she does give away that it’s all pure superstition.
Hilary is ten hours in the operating theatre, far longer than they planned. Afterwards the doctors aren’t even encouraging. The assistant surgeon, with a frankness I have come to prefer to the usual flustering for an improbable sensitivity, says he didn’t find a single bloody tendon he honestly recognised. Coming out of anaesthetic in the early hours, the child begins to have very severe fits, contortions, retching. Shirley phones me towards midnight, fearing she is going to die. I drive back to the hospital and we pass the dawn pacing a corridor and occasionally peeping in at a now heavily sedated baby.
In the morning I drive straight from Great Ormond Street to InterAct which has its offices in Hammersmith now. I press for extra sugar and look out through dirty panes at the huge black thrust of the Cunard Hotel, the lively, grey-gloss bustle of a summer morning in London. I realise I have been more than half hoping through the night for the easy drama of a death which would attract sympathy from all and generally make life possible again. Even now I imagine Shirley calling and telling me it is all over; I think how careful I will be to express no sign of relief. On my Filofax, to some unknown deity, I write the word: PLEASE.
How Do You Feel About Your Life?
Grandfather has accused me of trying to kill him. The nurses are assuring Mother this kind of delusion is entirely normal, indeed is one more reason why he really ought to be in a home now. I say perhaps I shouldn’t visit if it is going to disturb him.
So at least that side of the story seems to be working out happily enough. After just a few weeks on her own, Mother is already in better form than I can remember and since Shirley is out day and night at the hospital and seems likely to be so for some time to come, I accept her offer to come over to Hendon and cook for me. Thus when I get home of an evening she will more often than not be in the kitchen arguing with Charles about unilateral disarmament or euthanasia or privatisation, since Charles seems to be treating us almost as a home from home now (I really can’t understand this). He will be sitting at table eating biscuits while she fusses with the oven or over the sink. Sometimes she brings a Filipino girl along to help, one of the walking wounded, a battered wife I think. She’s a slip of a girl, dark, with a kind of furtive, injured beauty about her which I find rather attractive, though she never lets me get beyond the merest pleasantries before scuttling off to wherever her sad existence is based.
Despite the desperate situation at the hospital, this turns out to be really quite a pleasant time for me. A sort of hiatus. I’m waited on hand and foot. The house is calmer than when Shirley is around. There are even flowers Mother has picked from the garden, inexpertly arranged, but soothing all the same. Flowers are so alive and fresh in their stillness. Indeed, I can’t remember when I last felt so free of tension. And after Charles has finally pushed off with his politics and endless advice, and Shirley has called with the evening’s last bulletin on Hilary’s condition, Mother and I will have the most amicable mother-and-son conversations.
‘Hasn’t got over the fits yet?’ she enquires. Her knitting needles click along the edge of a tiny sky-blue cardigan. Cardigans will be easier she thinks if
the child has difficulty bending her arms. How easily she thinks these thoughts! Knitting she hums softly. Hymns. I recognise: ‘Oh God our help’, ‘Lo, He comes’, ‘Immortal, invisible’. Quite.
I’ve got the TV controls in my hand and, flicking back and forth through channels from the sofa, surprise myself by reflecting that had I married my mother, or rather someone like her, all would have been well. Wouldn’t it? I would have prevented her from spreading her generosity about too carelessly and she would have looked after me and generally agreed to do what I suggested, without the constant friction one has with Shirley.
Channel 4, I see, is illustrating the progress of the Spanish Armada with animated cartoons.
I say no. The girl has been at death’s door all day. Severe spasticity. I dropped in on the way back from work and she was in an awful state. Shirley is barely sleeping. A consultant friend of her father’s says that all the anaesthetic involved in such a long operation could cause brain damage in a child suffering from nervous disorders. Even cerebral palsy.
One says these things so calmly. And as I speak I do feel peculiarly calm. BBC2 is ‘examining’ safety in the air in the eager way journalists will. Should we be allowed to buy duty-free drinks? This is a burning issue. I fix myself a short.
Mother counts her stitches. She says: ‘Perhaps it was wrong of us to agree to the operation. But I’d prayed about it so much.’
I have less trouble these days accepting the non sequiturs in my mother’s conversation. One waits a moment as if to let a smell disperse.
On EastEnders some money has been stolen and race prejudice is polluting the investigation. As well it might, frankly.
‘It’s so difficult to know what to do for the best,’ she sighs. She begins to hum, ‘Oh worship the Lord in the beauty of holiness,’ reminding me of odd smells in choir stalls and paper pellets chewed from the corners of hymn books. Perhaps she finds the language on EastEnders hard to take.
