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