'I AM so deeply fortunate in my marriage and my work that concentration on the negative is, as I have said, distortion,' Margaret Spufford writes while setting the scene for an account of her daughter's life. She herself is a woman whose upper lip appears stiffer than her bones; she suffers from osteoporosis, a condition which usually strikes women after the menopause and makes their bones fracture easily.
After the diagnosis, made when she was 31, the prognosis entered her house wrapped, literally, around some rhubarb, in the form of a story from the local paper about a woman 'who had died not of osteoporosis, but of pneumonia after her thirty-second fracture, when her second egg-shell hip had broken during a journey to X-ray the first.' Two earlier accidental blows had damaged her spine, so the disease was not diagnosed in her first pregnancy nor in her second, three years later, though she spent both in orthopaedic corsets.
'But now the storm would hold off no more. The pattern of increasing pain that had followed the birth of our son reasserted itself, even more powerfully. I was walking up stairs with the baby in my arms and the three-year-old holding my hand when again I was immobilised by pain. I was terrified of dropping the baby. I was also terrified of making any sound, or showing any alarm that would shake the three-year-old's sense of certainty in his universe. It was eight hours until I expected my husband back. When I could, I sat on the stairs, my son by my side, and told him all the fairy stories I could remember, and a good few that came new to me.'
She was rescued on that occasion by an unexpected baker's van, delivering on its rural round. Doctors soon made the diagnosis, and then, as she was being returned from hospital on a stretcher, the ambulance men stumbled:
'I can only have fallen a couple of inches, but the effect was terrifying. All my reflexes seemed to go berserk in the pain. I, who so much valued control, was completely out of control. I was screaming, not even able to stop in case my son could hear. My fingers were clenched in someone's hair, the world ran amok, and my husband, who was there, was utterly irrelevant through the pain . . . 'She probably collapsed another vertebrae or two', said the hospital on the telephone, apparently. 'Just keep her quiet.'
'It was months before I dared tell even my husband, who was not likely to feel that I had suddenly been afflicted with religious mania, and knew I did not go in for pious or saccharine imagery, that quite extraordinarily at that moment of unreachability I had suddenly been aware, even as I screamed, of the presence of the Crucified. He did not cancel the moment, or assuage it, but was inside it.'
For a time in 1967 she ran the household while in plaster on her back, with a six-month-old baby, a four-year-old son, a cleaner and an au pair girl. The bank manager is duly thanked in her book.
Living like that they didn't notice for some time that the younger child, her daughter Bridget, was not well. When she was just under a year old, she had to be taken into hospital, where five days of wrong treatment caused one kidney to fail: 'The local hospital had no diagnosis. When they said her other kidney 'was not really working', I didn't realise to start with that they were trying to tell me she was dying. It was not part of my set of expectations that my child should die.
'So I was very slow to comprehend. When I eventually did, and took her to the Hospital for Sick Children in London, at something like six hours' notice, it came as a tremendous relief to have an Australian houseman say, 'Look, you have a baby with one kidney gone, and the other crook . . . I reckon we've got about four days. It's not very hopeful, but we will do our best.' At least I could now understand, because it was not all wrapped up.'
Bridget survived, within the irreducible horror of the very best we can do for sick children. 'What was intolerable was watching her learn fear: her fluid and chemical balance changed so fast it was adjusted on the basis of six- hourly blood tests. Sometimes these were intravenous, but most often a laboratory technician dug a triangle of razor blade into her fingers. She had very small fingers, and sometimes, not having enough blood, he needed to cut her again. She learned fast. I am never going to be able to forget the sound of her screams.'
She was suffering from a genetically caused metabolic disease called cystinosis. At that time little was known except that it was fatal. Her parents were told that she would certainly die before she was 14. With the help of two kidney transplants, one from her father, she defied this prophecy, though in her early childhood, after her year at Great Ormond Street, she could only be kept alive with intravenous drips, checked hourly day and night.
In all this time, Margaret Spufford could not sit for more than two or three hours continuously because of her spine. In these conditions she wrote several highly regarded works of sixteenth- and seventeenth-century social history. She also discovered a vocation to the contemplative life, and became attached to a Benedictine Anglican order, taking annually renewed vows.
Her book is no more an autobiography than St Augustine's Confessions. 'The writing was very costly, but the thing is my offertory, so it matters', she says.
There is no space here to do the theological reflections justice. One passage on the children's ward shows a starting point: 'The existence of Belsen and their like, that is of humanly created evil, I could, as a historian, cope with intellectually. Genetic evil, creation malfunctioning from birth or from conception (as it was in my daughter's case), was more than I could account for or understand. These children suffered - and small children suffer very acutely, and worse because no explanation is possible to them - because they were made wrong.
'The evidence of Divine activity in and through creation and the minute ways we share in it has always been particularly important to me. Now here I was, living week after week surrounded by the evidence of failed creation . . . the pots on which the potter's hand did indeed seem to have slipped. I think the bottom came for me when I tried to comfort a tiny anguished child (words are useless, only touch will do), and as I reached to stroke his head a nurse said hastily, 'Don't touch him, his skull might fracture'.'
Yet her book is still called Celebration, for reasons which seem, while you read it, convincing. I rang her last week, hoping to be able to understand, and perhaps to explain.
'Don't be embarrassed,' she said, 'but my daughter died on Sunday.' Bridget was then just 22. Almost unembarassed, I explained what I had hoped to do. She was worried that the story would come out all wrong and heart-rending.
'It is a tragedy,' she said, 'but it is not pathetic.'
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