Goodness (13 page)

Flow Chart

Drama over, routine sets in; looking after this strange child who catches every possible infection, who is allergic to antibiotics, to food additives, who knows no difference between night and day; the progress of other children (Peggy’s Frederick, Greg and Jill’s Rachel, running, jumping, chattering, doing jigsaw puzzles) simply underlining this other baby’s utter lack of it, can’t roll over, can’t hold anything, can’t sit up; Shirley giving all her time, all her energy, the exhausting nights. At age one, eight months after the op, the little girl smiles again, she even chuckles.

‘You see, she’s happy.’

‘Shirley, she’s blind, she’s immobile, she’s utterly deprived.’

‘But she doesn’t know she is. In her spirit she’s happy.’

I say: ‘I smile a lot. At the office I even guffaw. I tell jokes. It doesn’t mean I’m happy.’

‘That’s your problem,’ she says. ‘Or do you want me to kill you out of sympathy?’

She begins to find the most minimal signs of progress, an ability to clasp a hand around your finger, to move her head, just ever so slightly, when she’s called. Sometimes. She doesn’t attach disproportionate hopes to these developments. On the contrary, it’s really a sign that she has accepted things. She is content with this much. The girl can clasp your finger. So there is something there. Some personality.

At nearly two the child learns to roll over. We can’t leave her on the couch any more.

Stimulation! Yet another consultant expensively tells us what we’ve already read in books. And now I am encouraged
to design ‘computer games’ for the child. Well, I’m willing to try. I start with a big board that straps onto the eating tray on her £500 chair. When she presses coloured knobs an amplifier plays different tunes and bright colours shine on our TV screen placed right in front of her. Perhaps she can see, just a little. Perhaps. I wire up a system of pedals for her feet, I make the controls of the hand-operated board more complicated so she has to manipulate them, to the right, to the left. This strange child giggles, hearing our voices around her. She gets excited, heaving herself about. And it is gratifying. Shirley is impressed, grateful. I become enthusiastic. Hilary is pressing the pedals. She is, somehow, with wrist and elbow as much as fingers, moving the knobs. On purpose or at random? Her face is blank apart from those sudden brilliant smiles. Which don’t always seem to coincide with any visible stimulus, but does that matter? When I introduce a knob she has to turn rather than push she can’t do it. Immediately she loses interest. If it really was interest. She bellows. Flails limbs. What does she want? Give her food? Her bottle? No, she spits it out and screams. Hug her? She bellows even louder. What then? I think, this child will be in nappies, at five, at fifteen. At thirty. While Shirley tells our friends: see the progress she is making, she can push these knobs, look, these pedals, she makes the tune play, the lights come on. I can see the pain in the visitor’s eyes, the desire to change the subject, to head for the drinks cabinet. Even Peggy doesn’t seem to want to hold the girl. She’s heavy. With no real exercise she’s getting fat. How loud will she bellow when she’s twenty?

I am convinced I shall go mad. The sense I have of constant high tension in the jaws. The nightmares. And I now have a whole file full of euthanasia cuttings. I keep them locked in the bottom drawer of my desk. A woman in Carlisle has drugged to death a four-year-old boy terminally ill with bone cancer. The judge let her off with a suspended sentence. In Truro a man and wife are fighting because the wife wants their two-year-old comatose daughter taken off an iron lung and the husband doesn’t. He’s divorcing her over the matter
and wants custody of the child. She’s contesting it. She says she’s the merciful one. In Dijon, France, a man butchers his new-born mongoloid with a pair of scissors.

I read these articles on the Northern Line. Never more than a couple of brief paragraphs, they nevertheless hold me spellbound the whole journey from Hammersmith to Hendon Central. In Rotherham a nine-year-old boy with severe muscular dystrophy claws his way out of his wheelchair to throw himself from the third floor flat of the council estate where he lives with his unmarried, unemployed mother and alcoholic grandfather. Or was he pushed? And they’re actually bothering to check! Yes, full scale police enquiry. Time, tax money. Is this the public good? Medical evidence shows signs of struggle. Mother says yes but she was trying to hold him back. I miss my station.

Hilary, I think, could never be imagined to have climbed to a window.

On the other hand she can’t simply be switched off.

And I could never kill her with a pair of scissors. I love her.

This happens. I am walking back to the car in the tube-station carpark when I see a hoarding. It says:
MUSCULAR DYSTROPHY
: We Know The Cause, Now Help Us Find The Cure. What it shows though is three stylised green Plasticine figures. They are children. The two at each side are standing and reaching a hand down to help the third between them who seems to have stumbled and is crouching low. Tripped by the disease. Can they pull him up? Can they rescue their little companion? Buzzing open the car lock with the remote control, I burst into tears. I cover my face. This hopeless, stupid, heart-rending image of human solidarity. I feel so vulnerable. There is a Giro number to send cheques to, but I don’t write it down. The illustration has already convinced me that there is nothing to be done but turn away.

Shirley takes Hilary to church. She has converted though there have been no more dramatic scenes since the confession to my mother. Quietly and conventionally (I almost said sensibly), she goes to church, gets involved in creches, in
organising the kind of charitable events I have avoided since I was fifteen. Occasionally ‘church folk’ drop round and make an inhuman effort, maybe twenty minutes, thirty, to give Hilary some attention. Occasionally I find Shirley in what can only be an attitude of prayer, usually by the cot Hilary is now too big for (but she would fall out of a normal bed). So, after all our laughter years ago at Mother’s expense, Shirley has become a Christian. Whatever that really means. But she doesn’t want to talk about it. Nor do I. Just once she says, ‘However obscure, there must be some reason for this, some plan, there has to be. I do believe there has to be a God behind it all.’ Just once I say: ‘You can’t honestly believe we’re guilty and this is the punishment. It doesn’t work like that.’ She says slowly: ‘I know. You’re right. It’s just that sometimes I feel that’s how it was. I make that connection.’ It seems pointless trying to argue the absurdity of this out logically, since sometimes I feel the pull of this explanation myself.

Typical scene. Shirley comes running, says excitedly: ‘Hilary called me Mummy today.’ ‘Great!’ But I know that if the miracle ever happened it will never be repeated. The girl may giggle when you soap her in the bath, she may randomly press those knobs I have provided her with and laugh at the electronic tunes that result, she may even be able to see just a little light and colour, but she certainly never calls her mummy, Mummy.

Dressed up she looks a plain ordinary little girl somebody has tripped up, floundering on her back. On a rare visit, Mrs Harcourt takes a photo of her against a background of Alexandra Palace flowerbeds.

And two hours physiotherapy every single day. It’s a new American method. A trip to Philadelphia to gen up. We, or rather Shirley, bend her joints, roll her head around, knead her muscles. She screams throughout.

Will she ever be able to eat on her own? Even to bring a bottle to her lips? Who knows, but it has become Shirley’s mission I sense. All the more conclusively and engrossingly, because it is a mission that can never be accomplished.

Is this the life she wanted? We wanted? Isn’t it pathetic, creepy, giving so much help to a helpless case? Like my mother with Grandfather, with Mavis. Isn’t it a way of giving up on that other, bigger life we should be living? Shirley is intelligent, attractive,
valuable.

‘Is this the life you wanted?’ I ask.

‘It’s the life I’ve been given,’ she says mysteriously.

‘You sound like my mother now.’

‘What’s so bad about that? Your mum’s okay.’

I don’t say it, but I think, At least my mother’s wounded can walk. For some reason I think of the Filipino girl.

The fact is that although Mother hardly ever comes since that day I told her to leave, Shirley spends anything up to an hour on the phone with her every other day. Talking about me no doubt, and about Hilary’s ‘progress’. Meanwhile, at the office, I draw up the following flow chart:

What Heroes

I find it pretty funny frankly that it took an atheist like me to think of faith-healing. Still, weird things do happen. It would be foolish to pretend otherwise.

‘But you don’t believe in it,’ Shirley protests, laughing.

I remind her that we have tried all the consultants, we have flown to Houston and to Geneva. We have blown upwards of fifteen grand. It’s simply a case of trying to cover every angle. ‘That’s my way.’

She gives me her narrow look. ‘What exactly,’ she asks, ‘is Hilary preventing you from doing in life that you would otherwise like to do? Why keep hunting for a solution you know isn’t there? Come on. Tell me one thing she’s preventing you from doing. Nothing. You see. You can’t think of anything.’

I tell her: ‘Look, Shirley, if Hilary wasn’t here, I’d be happy to have another child. We could adopt one. I do believe we would be happy.’

‘What do you mean, “wasn’t here"?’

She knows perfectly well what I mean. Nevertheless, I say: ‘If she went into a home.’

‘But we’ve been over that a million times. She wouldn’t get any attention. She’d make no progress.’

‘She’s not making any progress as it is.’

‘Yes she is.’

My own inclination is to be honest about these things, however brutal it may seem. All the same, I say:

‘If she were being looked after, you could get a job.’

‘I don’t want a job.’

‘But you must want to get out of the house sometimes. Don’t you?’

‘Of course I do, but I can’t and that’s that, so what’s the point of moaning about it.’

‘You’re denying yourself.’

‘Yes.’

‘For a creature who has no hope, no future.’

She pauses. She bites her lip. ‘Not perhaps in the narrow way you define those concepts.’

‘So how does Shirley Harcourt define them.’

‘I don’t. I just get on with things, that’s life.’

‘Oh, mysterious life again.’

‘Right.’

Then she says: ‘Anyway, what future do you have, George Crawley?’

‘Oh come on.’

‘You see.’

‘I’m sorry, but I don’t.’

‘And didn’t George kill the dragon to save the damsel, not vice versa.’

‘What on earth is that supposed to mean?’

‘I’ve seen your scrapbook,’ she says, ‘okay? And it’s inhuman what you’re thinking.’

I turn away. ‘Only too human to go by what’s written in those articles.’

I persuade her, after the ten consultants, at least to go and look at a home. Check it out. We drive up to the Penelope Hardwick State-assisted Charity School for the Severely Handicapped in Enfield. In the car she says chattily: ‘I honestly can’t understand what’s eating you so much. I’m doing everything with her now. You have all the time in the world to do whatever you want. Leave earlier in the morning if you like, come home later. Work weekends. The world’s your oyster, George. Go get it.’

I realise she is telling the truth. I mean about not understanding. She can’t understand. This is the crux, she can’t understand me. Otherwise she wouldn’t say these things.

‘And if you want some fun at least get yourself snipped
so we can make love. I could do with some action too, you know. Then we could go out occasionally if you want. Your Mum is willing to babysit. So’s Charles, though I’m not sure I could trust him.’

‘I don’t want to see my mother any more than is necessary.’

She says not to be such a big baby. What does it matter if she knows we screwed around?

She doesn’t understand.

‘You’re hung up,’ she tells me then.

‘Perhaps I am. But at least one should be able to count on one’s wife to respect one’s hang-ups.’

And when Enfield’s one-way system at last allows us to find it, the home really is pretty awful. One storey, yellow brick, the windows blue metal-framed, black lino floors, walls green to waist height, white above, firedoors at regular intervals down an interminable corridor reeking of disinfectant; in short, the spaces, shape and general utilitarian meanness of any institution, rendered poignant in this case by worse than usual childish scribblings pinned on the walls, by a background smell beneath the disinfectant of shit, by the cluttering paraphernalia of the handicapped: wheelchairs, walking frames, lifting devices in the bathroom. And then, inhabiting this ersatz fluorescent-lit environment, the fifty hopeless, slavering, contorted, clamouring, spastic, clumsily-dressed, unkempt basket cases. I know, I know, but what else do you want me to call them? Do we have to be pious? Except that sometimes the eyes are so intelligent, the gaze so piercingly clear as they register your panic. One little Asian boy in particular. A tiny, horribly deformed monkey with huge gorgon eyes. Amused. He laughs when he sees me in my suit and tie.

But Hilary is not one of those. Her eyes don’t see.

The white-coated staff are kind, bored, complacent, addressing the children with the same slightly sharp, patronising voice one might use for untrained pets or for the senile. Irritation, one senses, is kept at bay only by professional resignation. How else could it be? Much flustering to get a
certain overweight Thomas to renounce a pen he is in danger of jabbing in his eye. ‘Come on, Tommy, you’ve been such a good boy this morning.’ Judging by his bulk, he’s at least eleven, ugly and belligerent.

Shirley smiles readily. She doesn’t seem to have the same difficulty simply looking that I have. Her manner reminds me of our pre-natal courses; she’s fresh, gregarious. Immediately she plunges into earnest conversation with one of the younger ‘teachers’ on the kinds of handicaps, the types of treatment. How many hours of this and that do they do, staff/children ratio, frequency of parental visits. ‘This child has Horner’s syndrome.’ As if we were connoisseurs. ‘Yes, it’s so exciting to see the progress they make, the way they come out.’ What were they like before? A spastic boy, wrists unnaturally twisted, is incessantly fingering pouted lips, his face blank in front of a morning TV programme showing how tennis balls are made. The TV is high up on the wall, out of harm’s way. In the corner a boy with only flippers protruding from his shoulders is trying to turn the pages of a comic book.

Of course these people must be looked after.

We are invited to stay to watch the children eat their lunch. I quickly invent a business appointment.

Silence in the car. I don’t even bother persuading. Shirley is kind enough not to say told you so. What she does do though is whistle as we inch down Ponder’s End High Street. She doesn’t often whistle. I recognise: ‘New every morning is the love’. She has recently joined the choir at St Barnabas. Apparently she sits at one end of the stalls with Hilary in her special chair on the chancel steps to the right. It is one of her illusions that Hilary appreciates music.

Finally she says: ‘What heroes.’

I say: ‘Yes, I was wondering why my mother never thought of it.’