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.
CHAPTER 3
DESPAIR
Paul was getting on for five and in the normal way of things would have been going to school. One of the tortures inflicted on parents of mentally handicapped children at that time was the ordeal by letter. A school doctor was sent to the house to investigate the child’s suitability for normal schooling (in spite of his or her very obvious non-suitability), and then would follow a formal letter, stating explicitly that the child was subnormal and therefore unable to benefit from normal education (the word they used was ‘ineducable’). Everybody concerned was well aware of this fact before the process was set in motion, but for some reason it had to be spelled out, the i’s dotted, the t’s crossed, and the parents’ noses thoroughly rubbed in the dirt. Most parents resented this official humiliation, but they could do nothing about it. When our turn came, and I was told to expect the arrival of a school doctor, I bowed to the inevitable. It was only a routine visit after all.
But it did not turn out quite as expected. I have often hoped that the school doctor who came to see Paul that day was not typical of her species. There she stood on the doorstep, a large, bouncy, tweedy woman whose burly torso positively heaved with excitement. We had not met before, but she absolved herself from the courtesy of introductions. I had barely got the front door open before she announced with breathless fervour: ‘I can’t wait to see this child. Do you think he might possibly be a cretin?’
Blind rage swept over me, and I would have given much to slam the door, or, better still, my clenched fist, in her jolly face. How does it happen that doctors, who presumably set out on their careers because they see themselves as healers, become so frequently insensitive to other people’s pain? For years Paul and I were no more than objects to be examined under a microscope, two animate creatures of momentary interest to medicine. It never seemed to occur to anyone, or if it did it did not seem to matter, that we were also sentient human beings who could be badly hurt. It was difficult learning to be a non-person, but I was learning fast. Building up a hard shell within which to shelter was part of the process of learning. The only sure way to protect myself from
