Travelling to Infinity

by Jane Hawking

  On the Saturday morning at the end of that week, we all awoke with sore throats, and the next day both Alan and Stephen were distinctly unwell. The inflamed throats were accompanied by a high fever. Inherently mistrustful of the medical profession, still resentful of their shabby treatment of him in 1963 at the time of diagnosis, and as phobic about hospitals as I was about flying, Stephen forbade me to call a doctor even though he was neither able to eat nor drink and was coughing on every breath. Later the next day, in desperation, I called the duty doctor, but Stephen shook his head in furious rejection of all her suggestions for palliative measures, such as cough syrup or any sort of cough suppressant, because he had formulated a theory that such measures, in suppressing his natural reflexes, could be more dangerous than the cough itself. Effectively he had become his own doctor and was convinced that he knew more about his condition than any member of the medical profession. Stephen’s mother, who had come over for tea on the Sunday afternoon, stayed on, and between us we nursed Stephen through a very disturbed night. The next day – my birthday – though very ill, pale, gaunt and racked by the choking, Stephen still refused to allow me to fetch help until late in the day when – as a major concession to me on my birthday – he let me call the doctor. When finally Dr Swan was permitted to set foot in the house at 7.30 p.m., his reaction was pragmatically straightforward: he called an ambulance at once, reassuring Stephen that he would be home again in a couple of days.

  It was surely providential that at that blackest of moments when we arrived at the admissions unit – with Stephen thinking that he was about to be confined to a condemned cell and I, in an anguish of uncertainty, helplessly stroking his arm – the sound of a familiar voice, confident and authoritative, emerged from the doctors’ office. It belonged to John Stark, the chest consultant who drove Robert to school every day. Stephen could not fail to respect John as a friend, whatever his opinion of doctors in general, and I was overjoyed to encounter someone in authority who could take charge of the situation without demanding lengthy explanations, someone with the medical expertise to relieve me of the impossible responsibility of caring for a very sick patient unaided. Nevertheless, because Stephen was so helpless in his inability to communicate with more than a handful of people, and because of his terror of being fed either a medicine or a food which could have harmful effects, I stayed in the hospital at his bedside all night. The next day showed a slight improvement in his condition – which had been diagnosed as an acute chest infection – as he gradually began to climb the first rungs on the ladder towards recovery, and two days later he was so much more cheerful that he seemed well enough to come home.

  In the meantime, life at home had resumed a semblance of its usual pace. My parents had come to look after the children, Lucy had gone back to school and Robert went on a school day trip to York. When Alan and I collected Stephen from the hospital on 1st April, we entertained the foolishly optimistic hope that we were going to be able to get back to normal straight away. No sooner had we arrived home, so full of eager anticipation, than Stephen began to choke violently and incessantly and almost immediately slipped back into a desperate state. There was nothing that could be done to help him in his suffering, despite all the advice of the medical experts. He choked whatever position he adopted, whether sitting up or lying down. He could neither eat nor drink and was too weak to endure physiotherapy. My mother, Bernard Carr, Alan and I operated a rota system. One or two of us sat with Stephen all day and all night while the others slept. There was little doubt that the situation was extremely critical. I hardly needed the doctors to tell me that I should prepare myself for the worst.

  Where medical science had admitted defeat, the concern shown by friends brought an unexpected revival of strength, inspiring a spontaneous renewal of hope. John Sturdy, the Dean of Caius, and his wife Jill came one evening, quietly and unobtrusively, to offer support through their prayers. Stephen’s students and colleagues were unwavering in their devotion, visiting regularly and helping with his care, often through the night. Gradually, though still very frail and prone to choking attacks, Stephen began to improve until on Sunday 4th April he spent the whole day without choking at all and managed to eat a little pureed food. But that night his condition deteriorated again, and the following day saw us sliding back to square one. Robert awoke that morning with a high temperature, covered from head to foot in chickenpox blisters, and during the day he became delirious.

  As my father was himself on the point of going into hospital in St Albans for an operation, my parents had returned home when Stephen first began to show signs of recovery. In their absence I had to throw myself on my good friends for help with the children, especially on Joy Cadbury, who for several years had hovered in the background, always ready to help with the utmost sensitivity when the need arose. In 1973 Robert had stayed with the Cadburys while we were in Russia and both he and Lucy always felt very much at home with their children, Thomas and Lucy Grace. They had already spent a couple of nights with the Cadburys when Stephen was in intensive care and I was with him at the hospital. The magnanimity with which Joy offered to nurse Robert, bespeckled with red blisters as he was, was quite beyond any call of friendship, since it was a foregone conclusion that both her own children would develop chickenpox within the next three weeks. I had no option but to let Robert go as the demands on me were so great, and my own resources were so depleted, that I could scarcely register what was happening to us.

  In Joy’s tender care Robert bounced back to health, though, of course, her children succumbed. My father came through his operation, and when, a day later, I managed to snatch an afternoon for a flying visit to St Albans, I was glad to find him up and about, walking round the ward. Stephen’s recovery was slower and less predictable, mostly because he refused to take the penicillin he had been prescribed. He sat silently in his chair, resting his head on his hand, in the same melancholy posture he had first adopted in the Sixties. He did not speak, he choked frequently, and ate and drank in small, careful sips. He was not strong enough to go out, so the Department came to him and held its seminars in our living room. At last over the Easter weekend, he began to show signs of gaining strength. Only then could we begin to sleep at nights and I could relax my guard a little. The children came home, and in the one remaining week of the school holidays we looked forward to catching up on some holiday activities.

  Stephen had other ideas. That Easter Monday, still in the early stages of convalescence, he summoned his students, commandeered the car and set off for a five-day conference in Oxford. As I stood in the doorway watching them go, my disbelief at such recklessness condensed into a desperate urge to escape – as far away as possible. Dennis and Lydia Sciama, who were aghast at Stephen’s foolhardiness, recommended a hotel in St Ives in Cornwall. In a daze of miserable incomprehension, scarcely knowing where we were going or why, driven by a manic desire to get away from Cambridge, the children and I fled to London and boarded a train at Paddington for the West Country. The train whisked us further and further south. After Exeter it slowed down, crawling along at a snail’s pace, snaking along winding branch lines. Oblivious to the slow passing of time, to the children’s games, to their laughter and chatter, I gazed blankly out of the window, staring at the primrose-spattered fields of Cornwall without really seeing them, plunged into a stupor of exhausted dejection.

  5

  Celtic Woodland

  It was obvious: we were living on the edge of a precipice. Yet it is possible even on the edge of a precipice to put down roots that penetrate rock and stone, roots that insinuate themselves into even the most meagre soils to form a sufficiently secure foundation for the branches above, stunted though they be, to produce foliage, flowers and fruit. At the end of April, on our return from Cornwall and Stephen’s from Oxford, the children went back to school as if the nightmare of the Easter holidays had never happened. Quietly philosophical and undemanding, Robert had always taken his father’s illness and disability in h
is stride, and fortunately he now went to a school which provided plenty of scope for doing all those physical activities that he and his father could not do together. Since Lucy followed her brother’s lead in everything, she showed few signs of disturbance at the unconventional nature of her background. Our lives appeared to have taken up their usual rhythms, though perhaps with an even greater determination to focus on each moment of each day. As Stephen and the children settled back into their routines, I grasped every spare second to jot down a few thoughts on the thesis; I redecorated, yet again, the rented house owned jointly by Robert and his grandparents, upon which we depended for paying part of his school fees; I attended the singing class whenever possible; and I cooked for dinner parties for the advancing hordes of summer visitors to the Department.

  In midsummer, a BBC television crew came to make a film about Stephen, as part of a two-hour documentary on the origins of the universe. By chance, the producer, Vivienne King, had been a student at Westfield in the same year as me. Although she had studied maths, she did not adopt a hardline scientific approach to the filming but wanted to present Stephen sympathetically, as a rounded figure set against the background of his family life. This image appealed to me because I feared that a hardline scientific approach could well present him as a sinister character, like the malevolent wheelchair-bound Dr Strangelove in Stanley Kubrick’s film. The finished product, the first and best of its kind, contained the elements of a poetic idyll – albeit in a scientific context. Stephen was, of course, seen at work in the Department, interacting with his students, conducting seminars, expounding his latest theories. He was also interviewed at home against the backdrop of the two children playing in the summer sun among the flowers in the garden. When the film was broadcast worldwide the following winter as part of a major BBC documentary – The Key to the Universe – a school friend of Lucy’s, the daughter of a visiting scholar, watched it back home in Japan. The mother wrote to tell us that her daughter had stood transfixed in front of the television screen when she saw Lucy sitting on her swing under the apple tree. “Lucy, Lucy...” was all that she could say as the tears poured down her cheeks.

  This was certainly the image of self-sufficiency to which we continued to aspire, though that image and the sweet illusion of success were becoming less easy to sustain. Alan Lapedes was so exhausted on his return from the Oxford conference after Easter, that he had to go away for a couple of weeks to recover. After all, he had been ill with a chest infection too, but no one had given a moment’s thought to his state of health, because his help had been urgently required in caring for Stephen. He had unstintingly helped throughout the critical period – and beyond, because when Stephen decided to go to Oxford, he had had no choice but to go with him.

  Stephen’s valiant attempts to appear fit and well may have stood him in good stead in the Department, but at home his spirits were alarmingly low and his constitution was dangerously weakened. He spoke only to voice his demands, and no sooner had one need been met, one command fulfilled, than another would arise, stretching me to the limit of my endurance. We needed help more than ever but no help was forthcoming, in spite of our doctors’ concerted appeals to the National Health Service. In any case, Stephen still absolutely refused to accept any outside nursing help. My doctor applied to the local authority for a home help to assist with the domestic chores, since all our spare income was spent on augmenting Robert’s school fees and did not run to the luxury of a daily help. No help materialized, however, because when the social worker came to assess us, one glance at our surroundings was enough to disqualify us from any benefits. She was only one in a long line of people who failed to distinguish between the gilded illusion that we struggled to maintain and the brutal reality at the core of our situation.

  Help, when it came, assumed a form which, in its innocence, was so precious that although it eased the physical strain, it increased a hundred times my guilt at being unable to cope on my own. Robert, at nearly nine years old, stepped out of his childhood and began to fetch and carry, lift and heave, feed and wash, and even take his father to the bathroom when I was overwhelmed with the weight of other chores, or just too exhausted to respond. In Stephen’s pragmatic philosophy of survival, Robert’s arms and legs were as good a substitute for his own as anyone else’s, and certainly better than having a nurse in the house, even temporarily. It disturbed me greatly that Robert’s childhood, that unrepeatable period of freedom, was being brought to such an abrupt conclusion.

  For the week of half-term at the end of May, I arranged the family holiday that we had not had at Easter – five relaxing days in our favourite hotel, the Anchor at Walberswick, only two and a half hours’ drive from Cambridge. Despite all the efforts of the hotel staff to cater for all our needs, including the diet, the holiday was a disaster. Stephen choked from beginning to end, but took umbrage at the suggestion that he might prefer to eat his meals in the privacy of our own chalet. Consequently every mealtime was an ordeal, as his convulsive wheezings ricocheted off the walls and distracted the other guests from their food. He subsided into a depressed lethargy and built a wall around himself, communicating only to express his needs in a morbid game of “Simon says...”. Robert’s help was called for again and again when I reached breaking point – as I did often since this situation demanded more stamina and courage than I possessed.

  I was desperate for help and asked myself frequently where I could find it, almost always drawing a blank. Our friends were all keen enough to help in the short term, but they had their own families, their own lives to lead. There was no one who could spare the time or the energy to give us the undertaking, the dedication we needed so badly – above all to relieve Robert of the premature burdens and responsibilities that were being placed on his young shoulders. In my despair I approached Stephen’s parents, since they were the only people I could turn to. My own parents had given us huge amounts of help throughout our marriage and were wonderful grandparents, but there was little that they could do in this extreme situation where medical intervention was often required, nor did I feel that it was fair to ask them. Stephen’s father had promised to help in any way possible in that euphoric period before our wedding in 1965. Indeed Frank Hawking had painted the bathroom for us when we first moved into Little St Mary’s Lane; he and Isobel had paid for my stay in the nursing home when Robert was born, and they had also paid for us to have a cleaner once a week when Robert was a small baby. They had given us quite a large sum of money to help us buy our house, and had generously handed on a couple of family antiques to grace our living room. Isobel had come to look after Stephen when the children were born, and she had also been prepared to fly off with him to conferences across the world when small children and flying phobia kept me grounded. On our annual trip to the cottage in Wales, she and Frank could be relied upon to help with Stephen’s care; she, with controlled good nature, often calming her husband’s impatience, for clearly it took a considerable emotional effort and self-discipline for him to reconcile himself to the time-consuming restraints of Stephen’s severe disability. Although their own property was so dauntingly unsuitable for a disabled person in a wheelchair, they were curiously meticulous about reconnoitring castles and beauty spots for excursions, counting steps and registering any other hurdles in advance of our arrival.

  Their visits to Cambridge however were always much more formal than my parents’. Mum and Dad were demonstrative and passionate grandparents, involving themselves in every aspect of the children’s lives and our own, whereas Stephen’s parents behaved like guests rather than close relations – and of late I had begun to sense a distancing in their attitude, as if the veneer of normality we struggled to maintain was so convincing that no more involvement was required on their part. On our return from Walberswick, I wrote a despairing letter to them, begging them to bring their minds and their medical knowledge to bear on the situation to help ease the overwhelming difficulties which were threatening us. My promise to Stephen h
ad not altered, but, with the best will in the world, it was becoming much more difficult to sustain, particularly in the face of the unrelenting stress, all day and every day and much of the night as well. If anything the pace of life had accelerated since Stephen’s recent chest infection, with a major conference in Cambridge, more dinners, more sherry parties and more receptions. I was at breaking point, but still Stephen rejected any proposals to relieve either the children – especially Robert – or me, of the strain. His constant rejection of our need for more help was an alienating force, wearing away the empathy with which I had shared every dispiriting stage in the development of his condition. In his reply to my letter, Frank Hawking promised to confer with Stephen’s doctor about the medical aspects of the case and said that there would be ample opportunity to discuss other matters at greater length during our forthcoming summer holiday in Llandogo.

  There was actually very little opportunity to discuss these matters in Wales because of the characteristic Hawking reluctance to discuss anything of a personal nature. Dutifully Frank helped with Stephen’s care every morning and then, usually clad in boots, waterproofs and a sou’wester, he disappeared into the wilderness to attack the weeds which were making a mockery of his attempts to grow vegetables in the rainforest conditions of the steep east-facing hillside. Isobel valiantly did her best to organize interesting excursions for us, dodging the showers in the afternoons – a teddy bears’ picnic, a visit to Goodrich Castle, a hunt for four-leaf clover – all pleasant, sociable family outings, conducted without any reference to the underlying problems and tensions. One morning she came to me and in a tone of flustered defiance said, “If you want to talk to Father, you had better see him now.” She pointed outside to where Frank stood in the pouring rain. I donned my raincoat and joined him under the dripping trees. We walked along the road, not speaking, splashing across the rivulets that were rushing straight down the hill to swell the river in the valley below. My thoughts and emotions were churning in such a chaotic whirlpool that they would not be so easily channelled into a coherent flow. I was afraid of appearing disloyal to Stephen, yet I had to persuade his family that all was not well, that ways and means had to be sought, and if necessary imposed, to lighten the burdens. If nothing else, it was essential to relieve Robert of the tasks that were oppressing him.