by Jane Hawking
I emerged from the interview room to a remarkable sight. There, standing in the corridor, was a Fellow of Gonville and Caius College, though not someone whom either of us knew at all well. James Fitzsimons and his French wife, Aude, had been on holiday with Aude’s family in Geneva when word had reached them from the College that Stephen was ill in hospital there, and they had come to offer help. They could not have arrived at a more propitious moment. I was profoundly shaken by the events of the past week and was disturbed, though defiant, at the interview. I realized that the crises were by no means over, and indeed a worse crisis could be looming, for it was not at all certain that Stephen would even survive resuscitation from his drug-induced sleep.
James and Aude brought fresh energy and buoyant, though sensitive, resolve to bolster our resources. As Stephen was slowly restored to us, James joined our long vigils, taking a share in the rota, which consisted of Bernard, Jonathan, the remaining students and myself. We were not there to act as nurses – there were plenty of those in the hospital – but to strengthen Stephen’s fragile hold on life and reawaken his interest and his curiosity from their unprecedented state of inertia. James was a fluent French speaker and was able to relieve me of some of the pressures of communicating Stephen’s every indistinct request to the nursing staff. His attempts to mouth those requests were impeded by the tubes and masks covering his face. Those of us close to him had to try to anticipate his needs and ask the right questions; he would respond in the negative or the affirmative by means of his painfully expressive eyes, now open again, and by raising his eyebrows or frowning.
To alleviate the tedium, we read aloud from whatever holiday material we happened to have with us. With my student, Gonzalo Vargas Llosa, I had begun to explore the works of the blind Argentinian multilingual polymath Jorge Luis Borges, whose ideas excited me: I was particularly fascinated by his preoccupation with paradox and ambiguity, time and timelessness and the cyclical nature of historical events. His writing appeared to mirror in literary, even poetic, form much of the substance of scientific discovery in the twentieth century, and might be conceived as literary versions of Escher’s spatially irreconcilable drawings, themselves artistic representations of a mathematical concept, the Möbius strip. I had intended to read Borges’s El Libro de Arena (The Book of Sand) over the summer holidays, so, hoping that its conundrums and enigmas might appeal to Stephen, I commissioned Bernard to bring an English translation to Geneva with him. Whether Stephen appreciated the rather complex, cerebral games of Borges’s writing, I did not discover. I relished the stories for the intellectual escape they offered from the nerve-racking tension and clinical monotony of the intensive-care unit. But my fascination was even stronger when I found that I was being absorbed into the puzzle of the literature myself, especially through the first story, ‘The Other’, an apparently autobiographical story set in Geneva. Borges is seated on a bench in Cambridge, Massachusetts in 1969, looking out over the Charles river. A young man comes to sit beside him and the two converse. The young man, however, asserts that they are sitting on a bench overlooking the Rhône in Geneva in 1914. He is, of course, Borges’s youthful self, and he recounts details of his home life at number 17 Route de Malagnou in Geneva. The ideas in the story – of identity, time travel, dreams, prediction, of history repeating itself and of knowing the future, were stimulating in themselves. But the coincidence that I had, unknowingly, chosen to read this story to Stephen in Geneva gave me the startling impression that I had entered it myself and become a part of it, adding yet another dimension. Bernard, still engaged on parapsychological research as an antidote to physics, enjoyed the coincidence. One afternoon, as Jonathan and I were leaving the hospital, I suggested driving out of the city to catch a brief glimpse of the Alps. Our route took us along the Route de Malagnou. On the way out of the city and on the way back, we scoured the street for number 17, the house in Borges’s story. We could see 15 and 19, 14 and 16, but of number 17 there was no trace.
Once Stephen had regained consciousness, the pace quickened. As soon as possible an air ambulance, paid for by Caius, was commissioned to bring us back to Cambridge. Carrying an enormous amount of luggage, Jonathan set out for home by car on the same day that Stephen and I – accompanied by a doctor, paramedics, portable ventilators and other equipment – were loaded carefully into an ambulance, whisked to the airport, decanted into a small, red jet and sent hurtling into the sky the moment the hatch was closed. Had it not been for the circumstances of our flight, I might rather have enjoyed it – even Stephen roused himself sufficiently to peer out of the window as we soared above the clouds. This was the way to fly: our private plane was given priority over all the other airliners queuing up for space on the runway; there was no time for anxiety, none of the usual hassle and no delays. At Cambridge airport, John Farman, the head of the intensive-care unit at Addenbrooke’s, was waiting to meet us with an ambulance on the tarmac.
Although Stephen had undeniably received excellent treatment in Geneva, there was an irrepressible sense of relief at being back home, where we and our situation were well known. Many a familiar figure appeared in the intensive-care unit that day, including Judy Fella, Stephen’s former secretary. She had already been active on his behalf and was ready to give whatever help was needed. There were no gasps of surprise at Stephen’s ambitious travelling schedule or incredulity at his domination of motor-neuron disease from the staff at Addenbrooke’s. The minimum of general explanation was needed. Nevertheless, detailed explanation was required of the management of his case, of the routines that he himself had developed, of the precise quantities and frequencies of the medications he took, of the positions he liked to adopt when lying in bed, of his insistence on a gluten-free diet, even when being fed by tube. Each and every one of these matters, and many more like them, became the subject of lengthy discussions and investigations.
Three days after the flight, by which time Stephen’s condition had stabilized in intensive care, John Farman thought it might be possible to ease him off his dependence on the ventilator; he was keen to encourage him to breathe unaided in the hope of avoiding the threatened tracheotomy operation. By Tuesday 20th August, Stephen seemed to be making good enough progress for the experiment to be tried. He was comfortable and gaining strength, and we – that is, as many friends and relations as could be mustered – had devised a rota, mounting guard over him by day and by night. Usually the long-suffering students, or our team of nurses or physiotherapists, including Sue Smith and Caroline Chamberlain, would sit with Stephen by night, and the family and other friends took turns by day. The nurses promised to ring if Stephen needed me that night, as they embarked on the delicate process of detaching him from the ventilator.
The telephone rang in my bedroom in the early hours of the morning. The ward sister said little, except that she thought I should go to the hospital straight away. She offered no explanation. As my parents were looking after Tim, I had only to dress and leave a note before slipping out at first light. Stephen was very ill: a blotchy grey pallor had taken the place of his whitish complexion, and his bulging eyes were drained of all colour. His limbs were rigidly frozen in spasm, while a brutal cough had returned to torment his throat, like a cat toying with a mouse, letting it go, then pouncing with sharpened claws. In between each attack, he desperately tried to draw breath. Fear was written large all over his face.
The expression on the nurses’ faces gave me to understand that they thought that very little could be done for him, and that the end was near. I thought differently. That the old demon was back and currently had the upper hand was obvious, but I detected a familiar element in the choking. That element was Stephen’s own understandable tendency to panic. But it had been controlled before, and there was just a chance that it could be brought to heel, using the simple relaxation techniques that I had learnt in yoga classes and which I had practised successfully on him at home in past crises. I sat at the head of the bed and put one arm round the back of
his neck. While I stroked his face, his shoulder and his arm with the other hand, I slowly whispered soothing words into his ear, as one might when calming a fretful baby. I chose my words carefully, and tried to create a gentle, rocking rhythm to ease away the panic. I conjured up scenes of calm, blue lakes and balmy, clear skies, rolling green hills and warm, golden sands. Gradually, over the next few hours, as the tension subsided and as his body relaxed, the paroxysms yielded to a quieter, more regular breathing pattern. Finally he dozed off. I was exhausted but jubilant: my homespun attempt at hypnosis had worked! There was no escaping the fact, however, that Stephen was still critically ill.
I went away for a rest, leaving the telephone number of our good friends, John and Mary Taylor, who lived close to the hospital. As well as being regular visitors to Stephen’s bedside, the Taylors had offered me the use of their house. That morning I took up their offer at 7 a.m. Mary offered me a bed, but I preferred to sit for a while in the garden to breathe in the fresh morning air, so welcome after the sterile, dry atmosphere of the hospital, and to let the early sun caress my weary frame. Mary brought me some breakfast and we sat talking. I was incoherent with tiredness but I had one overwhelming desire, and that was to speak to Robert. It was so long since I had last seen him and so much had happened in the interim. I had to assume that he was well and that no news was good news. According to the schedule he was due to be back at base camp before setting off on the final expedition, and was therefore no longer incommunicado. I felt that the time had come to warn him that his father was critically ill, though I did not intend to ask him to come home. “Phone him from here,” Mary suggested with her customary generosity. I had not the will to protest: I did as she said, and dialled through to Iceland with trepidation. When I heard Robert’s voice, my resolve crumbled and I broke down. Whatever my intentions, they were overridden by a cry from the heart which escaped before I could suppress it. “Please come home!” I heard myself pleading into the phone. “Right!” he said, without the slightest hesitation. He came home the next day and was met by the Taylors at Heathrow. I did not realize that, had he completed the expedition, he would have qualified for a Queen’s Scout Award. When later I heard about the canoe-capsizing episode, he laughed it off as a triviality.
My return to the hospital revealed the sort of variations on the theme of illness that had become familiar over the past two interminable weeks. Stephen’s life still hung by a thread, new strains of bacteria had been found in his lungs and the medication had been changed. He was breathing through the ventilator again, but cheered up considerably at the news of Robert’s return. I discussed with John Farman the possibility of bringing in a professional hypnotist to encourage him to alleviate the panic attacks and relax those muscles which went into spasm when he tried to breathe. John readily agreed and brought in a GP of his acquaintance who was also a trained hypnotist. She had moderate success, using the same techniques that I had been using, but not enough to warrant parting Stephen from the ventilator for any extended period. There was, it appeared, no alternative to the tracheotomy, the operation which would allow him to breathe through a hole in the windpipe, bypassing the troublesome membranes and muscles in his throat.
As August slid into September and the doctors started to talk seriously about performing the operation, the lung infection was at last responding to treatment and Stephen was getting stronger. Whatever they may have felt about the risks of such a step, I was beginning to feel confident that Stephen would survive. How could he not survive with so many people contributing in every imaginable way to his recovery? Some offered invaluable practical help, at his bedside, nursing and communicating; some helped with the day-to-day administrative problems or with running our home; others, more distant, offered moral support; others prayed. Many, like Jonathan, who had arrived back from Geneva, and his parents and mine, did all of these.
The operation was a success, and Stephen made such a rapid recovery that after four weeks in intensive care it became possible to lift him out of bed into his wheelchair, though he was still too weak to operate it himself. The prognosis improved daily until it was considered safe to move him out of intensive care onto one of the neurological wards. There was a price to be paid for recovery however: the operation had deprived him entirely of the power of speech.
3
The Burden of Responsibility
In Geneva we had been protected from the bustle of the wider world. There we had been able to focus on Stephen and his illness, our movements restricted to the route between the hospital and Ferney-Voltaire. Of that small border town, I saw only the statue of Voltaire, its most famous resident, who had settled there in 1759, putting a comfortable distance between himself and the French government, ready to flee into exile in Switzerland at a moment’s notice. Apart from the several arrivals and departures, the outside world which existed at the end of the telephone line was unreal, remote from the intensity of the tragedy of which we were part. In Geneva, too, we took each day as our measure of time. We neither looked forward to, nor planned for, anything weeks or months ahead.
Back in Cambridge that protection fell away. On the one hand, there were all the usual matters associated with our way of life at home that had to be dealt with; children had to be fed and cared for, bills paid, Tim taken to school every morning and collected in the afternoon, school functions attended and my teaching commitments fulfilled. On the other, the preoccupation with the fluctuations in Stephen’s condition continued to be just as harrowing as in Geneva and the hospital visiting consumed just as much time. My teaching hours had to be squeezed into the middle of the day – after leaving the hospital in the morning and before returning in the afternoon. It was only because my parents and Jonathan operated a comprehensive back-up system, and because many friends, particularly Tim’s godmothers, Joy and Caroline, generously offered help in some productive or reinforcing way or other, that as a family we survived this most exacting and exhausting period.
Keeping the home going while ministering to Stephen in hospital was by no means the full extent of my responsibilities. There were many pieces of business to be sorted out, not least the future of Stephen’s book. It existed in a first manuscript draft which had been accepted by a publisher. As soon as the contract was signed, in the summer of 1985, a New York editor started working on the manuscript, and his letter outlining preliminary criticisms was waiting for Stephen on our return to England, though Stephen was in no fit state to read it. It was no surprise that the manuscript was not publishable in its draft form, as many of the concepts it contained were far too abstruse for popular consumption. I myself had read it and marked in red the passages where the science was incomprehensible, and the publishers pointed out that every equation would halve the sales. In his present circumstances, it was unlikely that Stephen would be able to effect the fundamental changes required. Unless the manuscript could be amended by a ghost writer, we might have to return the advance, paid just before the beginning of the summer holiday. I approached one of Stephen’s former students, Brian Whitt, to enlist his help with the rewriting, but all other considerations on that score I put temporarily to the back of my mind, since there were others, much more pressing, in the forefront.
As Stephen began to make progress and was transferred to the neurological ward, his eventual return home was mooted as a distinct possibility. It was not at all clear how this was to be achieved since, plainly, Stephen would need specialist nursing twenty-four hours a day. Our previous, relaxed system of support by psychiatric nurses at specific times and for limited periods would no longer suffice, nor was their psychiatric training adequate to deal with what was essentially a critical medical situation. The tracheotomy operation which had saved Stephen’s life also brought its own concomitant risks, because the tracheotomy tube, inserted in his throat, had to be cleaned regularly by a sort of mini-vacuum cleaner to bring up the secretions which perpetually accumulated in his lungs, and the device itself was potentially a source of dam
age and dangerous infection. He was frighteningly frail and vulnerable. It was impossible to imagine a more extreme disability of the body.
Twenty-four-hour nursing for three hundred and sixty-five days a year would cost a phenomenal sum; predictably only a tiny fraction of this expense would be borne by the National Health Service. Funding would have to be found privately and nurses engaged privately too. The philanthropic foundations that had funded nursing for a couple of hours a day would be unlikely to pay for twenty-four-hour nursing at a minimum of between thirty and forty thousand pounds a year on an indefinite basis. Then, at that most critical time, a message arrived from Kip Thorne in California. The news of Stephen’s illness had travelled far and fast, thanks to Judy Fella’s concerned intervention and, in response, Kip advised me, as a matter of urgency, to make a representation to the John D. and Catherine T. MacArthur Foundation, an American philanthropic organization based in Chicago. In Kip’s opinion, there was a chance that the MacArthur Foundation might be prevailed upon to make a large grant, on the scale needed for permanent nursing for Stephen, if the case were well represented. Murray Gell-Mann, the particle physicist from Caltech, was on the board of the Foundation, and Kip was sure that he would encourage the other directors to give our case a fair hearing, though there was some uncertainty as to whether the Foundation would sanction a grant outside the United States. Speed was of the essence, since their next meeting was but a few weeks away.
