Читать книгу Blessings - Mary Craig  - Страница 10

CHAPTER 2

PAUL

During the first four years of Paul’s life, there was little relief. A local girl, Jean (who became a lifelong and invaluable friend), came in once a week to help with the cleaning; but, except that I went shopping when she was there, I was almost completely housebound and Paulbound. Frank and I had no social life. In those four years, at least, we never went out in the evenings. Dinner-parties, theatres, cinemas, were things once known but long-forgotten.

Once I had thought of myself as a woman with intellectual interests, but now my life was focused entirely on Paul. The other children too, of course, but mainly Paul. There was so much to do for him. Doubly incontinent, he was always having to be changed or cleaned up; he had to be watched constantly because his actions were unpredictable; and he had to be fed, like a baby, by hand, every spoonful shovelled into his mouth, since he could use neither spoon nor cup. And as he would chew everything a hundred times over, with maddening slowness, the time for getting the next meal ready was almost in sight by the time he’d got to the end of the previous one. He was a round-the-clock full-time job.

When I look back now on those early years with Paul, they float in a mist of unreality. Can I really have got up two, three, four times every night to put him back to bed when he was chasing round and round his room like one possessed? I know that I did, and I remember thinking hopelessly that it would never end, that I’d go on doing that for ever and ever, or until the accumulating exhaustion got me down. Paul wouldn’t even have a rest in the middle of the day to make up for the sleep he lost at night. He seemed never to get tired.

At first, I think it was other people from whom we suffered most, because it takes time to learn how not to mind, and you have to work at it. ‘Old fish-face’, the children in the road called after us, when I took him out in his pram. Paul didn’t hear, and if he had heard he would not have understood, so why should I mind so much? I don’t know, but I did. Sometimes the children just ran away when they saw us coming, and I had to steel myself to pretend that I hadn’t noticed that the street was suddenly empty. Once I took Paul on a bus into nearby Altrincham, and I froze when I heard a woman behind me say: ‘Children like that shouldn’t be allowed on public transport. It’s not right.’ At that moment, I remembered, with a sharp stab of anguish, how I had felt about poor spastic M.

I’m sure that it’s fear which deprives well-intentioned people of their normal sensitivity. Or it may be that the shock of horror is so strong as to oust all other, more generous, feelings. Whatever the reason, I seemed to spend my life nerving myself against the barbs of those who certainly meant no harm, but who couldn’t have hurt more if they had put their minds to it. There was a doctor, for example, an old family friend, who passed me by in the street one morning without a word, and with barely a nod of recognition. Next day he came round to the house sweating with outrage. ‘An animal,’ he almost shouted at me, ‘that’s what he is, an animal. Why don’t you have him put away?’ He was working something out of his system, and he didn’t seem to realise what his words were doing to me.

Poor Paul, so gentle he would never consciously have hurt anything or anybody, but so clumsy that he couldn’t help doing so. He infuriated Anthony. The latter was keen on making models of ships and aeroplanes, but there was no way in which the finished models could be kept safe from Paul’s marauding hands. He would trample on the other children’s toys and chew the wheels off their miniature motor-cars. Worse, he swallowed not only the rubber tyres, but every nut, bolt and screw he could lay hands on. We worried constantly, but the strange diet didn’t seem to affect his health.

Sometimes he played in the garden, usually in a small glossy red car, which was his pride and joy. He went on shunting himself around in it, even when he had long since outgrown it. Cars were his great love, and he was always happy when he was in one. Going for a ride in our elderly Ford Consul used to exhilarate him, and he would sit bolt upright on the back seat, with a seraphic grin plastered all over his face. He regarded everything that happened in the car as entertainment laid on specially for his benefit. Once Frank inadvertently backed into a lamp-post and swore colourfully Paul thought it was a marvellous joke, and rocked with an appreciative bellylaugh which didn’t improve his father’s temper.

We both did what we could for him, but sadly there was no question of a loving relationship between us. For love you need some kind of basic communication, a reciprocity. With Paul there was nothing. If he knew us at all, it was only as a vaguely friendly presence; there was no real recognition in his awareness of us.

Try as we would, we could never teach him that some things are just not done. He was incapable of learning from his frequent mistakes. If he pulled out the cutlery drawer from its moorings and proceeded to hurl its contents on to the floor, as he regularly did, you could give him a smack and put back the knives and forks a thousand times, but he never related the smack to what he had done. Cause and effect had no meaning for him; and neither had right and wrong; or dangerous and not-dangerous. In the end it seemed safer to limit him to one room, away from any obvious danger, with a few comparatively harmless toys to play with.

I still shudder when I recall the endless visits to hospital clinics, the hours of waiting for the ambulance ‘milk-round’, the countless requests from medical practitioners of varying eminence who all wanted permission to view this child with the rare and fascinating text-book disease. So rare that few of the doctors had come across it before; and they were eager to remedy the deficiency. ‘There are so few of these cases round,’ they would explain eagerly, bursting with professional excitement. ‘If you let us examine Paul, you will be making your contribution to scientific research into his disease.’ So Paul and I trudged (I didn’t drive in those days) to one clinic after another, meeting students who stood in awed or bored astonishment, while their tutors prodded and poked and pointed out Paul’s salient symptoms, referring to me throughout as ‘the mother’, as though I were not actually present in the room at all. Paul would play to the gallery on these occasions, acting the circus clown; while I sat there, positively crunching my teeth and reminding myself at intervals not to get sour.

When Paul was about four, I met a Belgian professor from Louvain who offered to try and cure him. Research on the subject of Höhler’s Syndrome was more advanced on the continent than in Britain, and it was this man’s speciality.

It was the first time we had been given any hope. Full of excitement, we decided to take Paul to Louvain. We didn’t have a particularly auspicious beginning; for some reason we decided it would be better to fly from Heathrow rather than from Ringway, which was near our home. But by the time we arrived at Heathrow, fog had grounded the planes at every airport in the country – except Ringway. We had a nightmarish wait of nine hours, in the airport lounge with an increasingly ebullient and noisy Paul.

When we eventually arrived at the Clinique St Raphaël, where Paul was to be investigated, we found that specialists from all over Belgium were coming to see him; radiologists, E.N.T. surgeons, neurologists, pathologists and cardiac consultants. One neurologist we met was quite excited. This man had written a medical tract on ‘la pathogénie du gargoylisme’, and was regarded as an international authority on the subject. He took me on one side to tell me about the little girl he had once treated, who had been completely paralysed by the disease. When given the treatment he had recommended, she was able to sit up and play with her toys, feed herself and even run about. Paul, he assured us, was in far better shape than this other child had been. In fact, Paul was the ‘best’ case of gargoylism he had ever seen; and he had every confidence that a cure could be found for him. I could hardly contain my own excitement.

Frank had come over to Louvain with us, but he had had to return to work in England at the end of the week. So after that time I was in constant attendance on Paul, who did not like Louvain or any of the things that were happening to him there. He hated and feared all the tests, blood-counts, injections, throat-swabs, etc., and he refused to drink any of the concoctions he was offered so enticingly. His fears boiled over one morning when he was summoned for a cardiograph. He kicked, fought and bit the poor young nurse who was vainly attempting to hold him still. Mysteriously, sedatives only served to excite him and make him more uncontrollable than ever. There was nothing for it but to bring in reinforcements; in the end, six people held down the struggling Paul, one on each limb and one on each end. He fought like a fury, but he could not win. He cheered up later on though, when he went to have his photograph taken: he loved the electronic flashes, and wanted more.

On arrival at the hospital, I had been asked if I would mind taking Paul along one day to meet a few students. No, I said, of course I didn’t mind. The presence of half-a-dozen or so students every time Paul was examined was by now a commonplace of life. A few more would make no difference.

So, early one morning, an escort came for Paul and myself. We were led down endless corridors, and across a quadrangle into another building, where we were ushered through a small door – straight on to the stage of a lecture theatre. I almost reeled with the shock of it, for, crowding the theatre in their serried ranks were the ‘few’ students who had been invited to see Paul – about five hundred of them. I suspect that the professors had issued a three-line Whip to get them there!

I sat there mute and choking, while Paul, hyper-excited by the tension and the spotlight so obviously focused on him, played up, charging round in concentric circles, and laughing his zany idiot laugh. With clinical detachment the lecturer began to point out the tell-tale signs. ‘Observe this child,’ he invited his audience. ‘The spatulate hands are typical of Höhler’s Syndrome. Notice too the protruding abdomen, the curvature of the spine ...’ On and on he went; and Paul gurgled and lurched around, paying his unwitting dues to science. I forced myself to stay seated, to stay calm, when every instinct in me wanted to run and run, far from that terrible place. They need to know all they can find out about this disease,’ I told myself sternly, ‘so they need Paul. It’s in the interests of science.’ Science, science, what the hell did I care about science? They could have pinned a Nobel medal for services to medical knowledge to my chest, and I should not have cared. All I wanted was to be a thousand miles away from that vast concourse of young people, to whom I was being indifferently pointed out as ‘the mother’ of a monstrous son. It was my moment of utter humiliation and abandonment; and it left a scar which has never healed.

It was all in vain, anyway. All our hopes came to nothing. But when I left the Clinique St Raphäel I didn’t know that. The doctors permitted themselves a cautious optimism. Paul, they had concluded, was suffering from over-stimulation of the pituitary gland, and they had a suitable treatment worked out. It would involve some risky radiation therapy, but it just might work.

There was nothing either cautious or qualified about my own reaction to the verdict. Disregarding the enormous ifs and buts which hedged it round, I soared from despair to riotous hope. Floating on air, after my final interview with the eminent professor H., I dashed upstairs to the room I shared with Paul and recorded in my diary, with a naivete which makes me blush to re-read it, ‘Wonderful, wonderful news. We are going to see Paul improving in every respect, growing slimmer and taller, with finer features, better hearing, less excitability, more responsiveness. In fact, it sounds as though within five or six months we shan’t recognise him.’ Poor silly fool, I had heard only what I wanted to hear and had entirely missed the crucial point that the achievement of this miracle was no more than an odds-on chance. With nearmanic enthusiasm, I was busy planning Paul’s future, doubtless speculating on whether he would go to Oxford or Cambridge.

Back home in Hale, a little more cold realism took over. The treatment recommended, irradiation of the tiny pituitary gland, situated at the base of the brain, was a tricky one and virtually unknown in Britain. It could not be undertaken lightly, on the say-so of a European doctor, however pre-eminent in his specialist field. But we were fortunate to have the Christie Hospital and Holt Radium Institute nearby in Manchester, and the doctors there agreed to give the treatment a trial on the National Health system. But they warned us that the risks were great, and they were ours alone. We asked them to go ahead.

And so, except when Frank could be free to take us by car, Paul and I started the ambulance milk-round again. Whole days were swallowed up in endless waiting – for the ambulance to come, for other patients who had to be collected en route, for the doctor to arrive, for the treatment to be given, for the anaesthetic to wear off, for the ambulance to return. Six hours was what it usually took, each week, with hope slowly dwindling to vanishing-point as Paul’s condition did not alter. After a few months of this, when there was not the faintest sign of improvement, the doctors were unwilling to subject Paul to further radiation. Reluctantly we had to face the fact that there had been no cure, no improvement, but possibly some deterioration. It is a fact that Paul lost the one phrase he had so far been able to master. After the treatment, we never again heard him say – ‘Bye-bye’.

Life with Paul went on being traumatic, but by 1960 there was a welcome relief. My mother and my Aunt Betty both retired, my mother very unwillingly from her job as a much revered local headmistress, and President of most of the teachers’ and head teachers’ organisations in St Helens; my aunt much more enthusiastically from a strenuous post in industrial nursing. Both were now free, with time on their hands and plenty of energy to expend. They decided that I ought to be the main beneficiary, and were very anxious to help.

Betty was the practical one, and she was wonderful with Paul. She had no illusions about what he could or could not do, and she knew he would never be any different. She simply accepted him as he was and did everything in her power to make his life a happy one. My mother was good with him too, but she had never come to terms with the situation. She had taken refuge in a sort of fantasy world in which Paul was no more than ‘delicate’; and she was quite happy with this version of the truth. Her own first child, my brother Tony, had been, as far as we were able to make out, very like Paul, but my mother had never accepted the truth about him either. He had died before I was born, and in my early years my mother constantly told me how good Tony was, how helpful, even how clever. Her fantasy even extended to the manner of his death. He had died, she said, of appendicitis. It was left to others to tell me that he had been severely sub-normal, and that he had been killed when falling out of a train. The various doctors who made a study of Paul and who asked about my family history, got no change out of my mother. I could tell them the little I knew or suspected, but it didn’t amount to much. She would admit nothing.

Betty – or Beb – as the children have always called her – was not my aunt at all, or indeed any relation. She was the nursing-sister in charge of the maternity ward where I was born. My mother had gone into the hospital to await my arrival and what she hoped would be her own demise. Betty had sympathised, taken special care of her, and afterwards had come to visit her at home. She was glad to make a friend, since her own home was in Yorkshire, and she had only just come to St Helens. Years later, when Betty decided to leave hospital work and take a job in industry, she moved in with us as a temporary arrangement – and stayed. We were a rather fearsomely all-female household: my mother, Gertrude, the sister with whom she had gone to live when my father died, Betty and myself. (The only men who ever came near were an occasional uncle and the parish priest.) I was always fond of Betty and was closer to her than to my mother. She and I would talk and share secrets, something I never did with my mother, of whom I was always in awe. The discovery, when I was ten or so, that Betty was not a blood-relation, was one of the most miserable moments of my childhood. I felt betrayed.

My mother had not even told Betty the truth about her son, Tony: she too had been told how clever he was. Then one day she met an old doctor who asked her if she had known my mother when Tony was alive. She said she hadn’t. ‘It was such a mercy he died,’ the old man said, ‘he would have been a millstone around his mother’s neck.’ But when Betty reported this strange conversation, my mother refuted it hotly. She had quite convinced herself of Tony’s normality.

So it was quite logical that she would see the Paul-situation through the same rose-tinted spectacles: she could not bear very much reality. But she loved Paul, and though she could not do for him what Betty could, she did her best. After their retirement, they both became frequent visitors to our house, though it was Betty who came more often. Betty, in fact, had offered to come for three days each week to look after Paul while I took a part-time job. The Headmistress of the school where Anthony was now in the kindergarten had asked if I could come and teach Latin in the senior school, and with Betty’s heroic help I should be able to. It wasn’t the teaching in itself that was so attractive. It was the opportunity it presented of escaping at least for a few hours from my own four walls. It was a way of preserving my sanity. Thank God for Betty.