Mary Craig writes about her second son Paul, diagnosed with 'gargoylism', in an extract from The Death of a Child
The writer and broadcaster Mary Craig has covered many subjects in print and on the airwaves in a long and distinguished career, including biographies of the Dalai Lama, Lord Longford and Pope John Paul II. Blessings, her 1979 account of raising her four children, sold over 250,000 copies worldwide and is regarded by many as a modern spiritual classic. Her severely disabled second son, Paul, died in 1966, aged 10.
I shall never forget the afternoon when we learned the awful truth. It was February 1958 and I had just discovered I was pregnant again. (Frank and I had an older son, three-year-old Anthony.) Paul, almost two, had been admitted to our local hospital for a hernia operation and for some unexplained reason the house doctor had asked to see me.
“Are you the mother of this child, er, um, Paul Craig?” he began, idly checking the papers on his clipboard. I nodded. “Well,” he announced in fractured English, “you know child is not normal. He has gargoylism.” Just like that, off-hand, uncaring. “Not normal… gargoylism”! I had a sickening vision of grotesque stone figures, water gushing out of their drooling mouths. Oh no, no, please not that.
There was no sympathy on offer, not even a glass of water. Only an indifferent shrug, as he walked out, leaving me to find my own way to the ward where Paul was. How had I not known, I wondered miserably, as I looked at him, my eyes open at last? Oughtn’t I to have seen: the stubby fingers, the too-thick lips, the bridge-less nose, the vacant eyes? Well, incredible though it sounds, neither of us had seen those things. We had seen only a pretty baby with big china-blue eyes and glorious curls.
The shock sent my emotions into deep freeze. I turned into a zombie. And when the freeze eventually wore off, it was almost worse. My imagination went into freefall. That horrible word “gargoylism” was working its poison and I recoiled before a future in which I was some kind of pariah, shunned by everyone. Why, why, why had this happened? Above all, why to me, of all people? Abnormality had always filled me with horror. I felt sick at the mere thought of it.
But within a few weeks I could see that all this rampant self-pity was going to destroy me. Repelled by it, suddenly I realised that I must call a halt. I had reached a crossroads. Either I could go on becoming more and more sorry for myself, losing most of my friends in the process. Or I could come to terms with the fact that, as my situation was not going to alter, it was I who must change. It was a no-brainer, really, a matter of surviving or going under. I had to stop asking: “Why me?” If one thought about it, why not me? What was so special about me?
Paul needed constant attention. He was destructive. He couldn’t feed himself. He rarely slept. What seemed like a dozen times every night, I would change his nappy and put him back in bed when he was racing round his room laughing like a mad thing; and I remember thinking that it would be like this for ever and ever.
It was made worse by the isolation we felt. It is difficult to convey, almost 50 years on, exactly how the mentally handicapped – and their parents – were treated at that time. It was assumed by both the medical profession and some of our friends that a caring and responsible parent would put a child like Paul into an institution and forget about him. (Had they any idea what hell-holes those institutions were?) We were thought irresponsible for keeping him at home. Also, there was no help from social services and none from the community. (“Children like that shouldn’t be allowed out,” said a woman loudly, when I once of necessity had to take Paul on a bus.) The unspoken thought, both privately and professionally, was that he was a person of no value; and we had no right to imply otherwise.
The crunch came one day when I was alone in the house with Paul. I went into his playroom and found that not only had he soiled himself but was cheerfully smearing the faeces all over himself and the walls. Weeping with frustration, I began to drag him up the stairs towards the bathroom, ignoring his squawks of protest. We had got halfway up when the squawks turned into a coughing fit. Suddenly, he was choking and his face was turning black. I was panic-stricken, stuck halfway up the stairs with my distressed and filthy bundle, and nobody within earshot. Summoning the strength to heave him up the remaining stairs, I shut him in the bathroom while I raced downstairs to ring for an ambulance, and then rushed madly up again to run a bath and clean us both up before the ambulance men arrived with an oxygen cylinder.
That night he almost died, but it turned out to be merely the first of many bronchial convulsions. I was always being warned to prepare for his imminent death, but somehow he always came through. I was torn apart by almost equal measures of love and resentment. He was my son and I loved him but I had sunk to a place where I seemed to be trapped in a long dark tunnel from which there was no escape.
Relief was to come in a most unexpected guise. In the summer of 1962, Frank came up with a suggestion: why not get away for a week? My mother and aunt had just retired from their jobs and would happily take over for a few days. It was a great idea (particularly since my aunt was a nurse), but where on earth could I go? I hated the thought of dragging my own misery around among strangers, or being alone in a hotel room. I had lost the habit of socialising. Then I had an idea. I could volunteer for work with a charity, if anyone would have me. I was not very practical, but at least I could cook.
I chose a home for concentration camp survivors in Cavendish, Suffolk, and they were desperate enough to say: “Yes, please, come ASAP.” Cavendish was home to Sue Ryder, who had worked with Special Operations Executive (SOE) during the war, mainly with young Polish Resistance fighters, and later did post-war relief work in the displaced persons’ camps in Germany. When the international relief agencies eventually packed up in 1949, Sue had stayed on to give personal care to the hardcore of homeless and disabled people – mainly Poles – who remained in the camps because nobody wanted them. She was always aware that official charity was not enough, that what these stranded men and women needed was an acknowledgment that they were valued as human beings. When she could find nowhere for them to go, she brought them to her mother’s home in Suffolk and cared for them herself.
That visit to Cavendish changed my life forever. I arrived one afternoon, dressed in a good suit and feeling rather noble; but before the end of that first day, having cleaned out a flooded bathroom, peeled countless spuds and helped cook supper for 70, I found myself facing the bitter truth: that I was nothing more than an empty husk with nothing to offer, but plenty to learn.
The survivors swam into my life: Maria, who had lost both her arms when thrown from a moving train by an SS guard, who now did fine embroidery with the needle held in her teeth; white-haired Jozefa, 50 going on 80, a long-term Auschwitz inmate who was one of the few survivors of a final death march; Edward, a Polish lawyer who had suffered in the infamous Pawiak prison in Warsaw before being dispatched to five years in the hells of Dachau and Flossenburg; Stefan Bor, who had run an escape route for Jewish children from the Warsaw Ghetto before being caught by the Gestapo and sent to Auschwitz, and Kazik, a prematurely aged young man, so beaten up by his SS guards that he was a mere vegetable, mute and semi-paralysed. I remember trying to feed him one night, ladling a spoonful of fish into his mouth while tears splashed remorselessly into the spoon.
Here was suffering far beyond anything I could imagine, yet these were remarkable people who seemed to have retained their humanity along with a sense of humour and a child-like wonder. They had been starved, humiliated, tortured, experimented on, stripped of everything and everyone that had given their lives value and meaning, deliberately reduced to the level of sub-humans, scrabbling to stay alive. And yet there was no sign of bitterness. How could I think that, compared with theirs, my own pain was in any way remarkable? I felt ashamed.
At first I was aware only of the horror of so many devastated lives. Then I noticed that I was actually singing as I peeled spuds and onions and beetroots and shared the endless cooking and washing-up. Hard though it was to believe, this was actually a happy place, and I was feeling relaxed for the first time in years. Cavendish was the living proof that it was possible to deal with pain by facing it head on, moving on with it, going beyond it. If men and women could retain their humanity after Auschwitz, then there was hope for us all.
I came home changed. Frank seemed to understand and offered his support. We had not given up hope that something could be done for Paul. Sue Ryder came up with a suggestion. A friend of hers, a Polish neurologist, had, on his release from the horrors of both the Nazi camps and the Soviet gulag, opened a sanatorium for 400 cerebral palsy children in a former barracks outside Warsaw. Sue persuaded him to take Paul into his care and got permission from the Polish Communist authorities for Paul to go to Poland for a two-year period.
Dr W came to see us, and we loved him on sight. He didn’t treat Paul as an interesting specimen but as a real person, and when he offered an – admittedly slender – hope of improvement, we leapt at the chance. What did we have to lose?
In the winter of 1963, Paul and I set off for Warsaw. It was without a doubt the best thing we ever did for him. When I left him in Poland a week later, I knew that he was as happy as it was possible for him to be. He actually smiled at me and, though he had no idea who I was, he let me hold his hand. Over the next two years I returned several times and could see a distinct change in him, a sort of general contentedness that was new. The bronchial problem had subsided (the climate obviously suited him). He enjoyed being with the other children and, though they were mystified by him, they seemed fond of him too. He was even learning to feed himself a little, cheerfully helping himself to cake and apples – and his favourites, big green Polish gherkins.When he dropped them on the floor, he just picked them up and crammed them in his mouth.
I was pregnant again. In January 1965 the baby was born – to my horror, with Down’s syndrome (then called Mongolism), a condition which was completely unrelated to Paul’s. We had made medical history; the odds against a combination like that being several hundred thousand to one. When my doctor came in to break the news, he put his head in his hands and wept. As for me, I was near suicidal. It was just so bloody unfair. “Why me?” raised its ugly head again with a vengeance. When Frank arrived in the afternoon, neither of us could trust ourselves to speak, and we held hands in silence. I absolutely dreaded the night coming on, dreaded the silence, dreaded being left alone with the terror, fury and pain that were raging anew inside me.
Never had the world seemed more bereft of meaning, and never had I been more in need of it. That night I felt myself spiralling downwards into a hell of hopelessness. Then something inexplicable happened: all of a sudden I was no longer falling. Out of the blue some words I had recently glimpsed (idly, no more) in a prayer book that Sue Ryder had given me, flashed into my mind: “Our tragedy is not that we suffer, but that we waste suffering. We waste the opportunity to grow into compassion.” The words flamed out at me, demanding to be looked at, impossible to ignore. It was as though I was being ordered to put my own problems into perspective without delay, to stop feeling sorry for myself and seek instead that compassion, which was nothing less than an openness to the pain of other people’s lives.
At the same time I felt myself held in a supportive embrace and a voice inside me said: “There is a way through this, but you must look for it outside of yourself. Remember you are not alone.” I was mistily aware of a great crowd of camp survivors, and I understood that they were linked by a common thread of suffering and that, now, I too was one with them, linked by that same common thread. I had an overpowering sense of “all shall be well and all shall be well and all manner of thing shall be well”. I have no explanation for any of this, and the experience has never been repeated, but at that moment I knew that the pain of Nicky’s birth would not destroy me. Somehow it would be redemptive, it could be used for good.
Next morning, as the first letters and cards arrived, expressing shock and dismay, I found myself able to reply to them. In some half-understood way I felt that it was these friends who needed comforting, and I wanted to reach out to them, to pass on to them what I had just learned: that in our darkest, most desolate moments, we may become aware that strength is available for us if we choose to avail ourselves of it. Call it God, call it what you will, it was the most powerful experience I have ever known and I can never forget it.
We called the baby Nicholas Peter. I can’t pretend I felt any love for him at first. I rather hoped he’d go away. When he eventually came home from hospital, and in spite of the fact that the washing machine, the smells and the exhaustion once again began to dominate my life, everything was somehow different. Nicky smiled at us, recognised us, was pleased to see us. The whole family fell head over heels in love with him.
We knew now that Paul was not going to get better. The bronchial pneumonia had returned, and Dr W could do no more. Nevertheless, the telegram from Poland came as a huge shock, arriving as it did on a bitterly cold December afternoon at the end of that year, 1965. ‘Child desperately ill. Come at once.’
The return journey to bring him back from Poland, as anyone could have predicted, was a nightmare, though everyone concerned tried to make things as easy as possible. The ambulance which brought us from the sanatorium was allowed right up to the plane steps, and as the plane was only half full we had a whole row of seats to ourselves, complete with oxygen cylinder. At Heathrow, where we were in transit, we were escorted to a private room where a nurse was waiting. And when we reached our home airport, Ringway in Manchester, Frank was able to drive his car up to the plane.
So next morning there they both were, Paul and Nicky under the same roof for the first time, neither of them aware of the other’s existence. Paul was now a heavy nursing case, condemned to spend what remained of his life in a bed, unable to move without help. On February 10 1966, my aunt found Paul dead on the floor by the side of his bed. He had fallen out of bed and suffered a heart attack, dying alone and frightened, in the dark, while we slept.
Writing this now has brought with it a lot of pain, but also some surprising insights. It has suddenly hit me that those parents who have experienced a still birth – or a baby who dies within a few days of birth – must have the same sense of being cheated by life. Paul was with us for 10 years, but I knew him no better at the end of that time than at the beginning. He was unknowable. Ask me about him and I can tell you that as a baby he had blue eyes and blonde curls. Beyond that – nothing. He was with us, yet not with us.
Afterwards, of course, there was guilt amid the sadness. Yet what hurt most in the days that followed his death was the general assumption (not within the family, I have to say) that Paul’s life had been a useless irrelevance, a disaster best forgotten. Even in the middle of sometimes extremely conflicting emotions, I was convinced that it was not really so. If our value as human beings lies in what we do for each other, Paul’s gift to me had been immense. He had challenged me to face up to my situation, and had led me to discover reserves buried so deep that I hadn’t even known they existed. “It is only with the heart that one can see rightly. What is essential is invisible to the eye,” as the Little Prince’s fox so wisely told him.
Taken from The Death of a Child, a collection of 12 reflections by well-known writers who have lost sons, daughters, brothers or sisters, edited by Peter Stanford and published by Continuum this month at £16.99