Travelling to Infinity

by Jane Hawking

  I had no practice in writing begging letters, but whatever reluctance I might have otherwise felt about such an exercise evaporated in the face of the overwhelming need. I put down all the appropriate information which might influence the committee, not omitting to mention that Stephen had been a frequent visitor to the United States and had received many honorary degrees there. I also included photographs, taken in happier times, of smiling family groups. It was essential to assure the Foundation that any grant would be handled by a team of professional accountants, so my next task was to negotiate with the University authorities to persuade them to administer the fund on our behalf. The negotiations were both complex and time-consuming, though the goodwill demonstrated was encouraging.

  The need to set up a private nursing scheme was the more pressing since certain aspects of the treatment Stephen was receiving in hospital were less than satisfactory. On the intensive-care ward he had received the full attention of the specialist nurses. The situation changed when he went onto the neurological ward. If the ward sister was generally cheerful and competent, some members of her staff appeared to be much less so. There were far fewer of them in proportion to the number of patients than in intensive care, but the lack of dedication, understanding and continuity was often alarming, particularly since many of the patients were in a vegetative state, unable to protest, think or even speak for themselves. One nurse, in particular, appeared to take advantage of that state to mete out treatment that was less than human. She was on duty when I arrived for an afternoon visit. Stephen, now sitting up in his wheelchair, was grimacing and squirming in discomfort while the young nurse, totally impassive in expression, busied herself about the room, deliberately – or so it seemed – ignoring his urgent need to pee. I helped Stephen myself and sent the nurse out of the room. That was her usual attitude, Stephen explained quivering with anger. She always ignored his needs when she was on duty. He did not trust her and was afraid of what she might do or omit to do. I could see what he meant. In her impervious expression and blank, pale blue eyes there was a chill hint of sadism which I, too, found very alarming. There was no alternative, I should have to move heaven and earth to get Stephen home, and that meant sorting out all the problems associated with twenty-four-hour nursing as quickly as possible.

  That Stephen was able to protest about the nurse’s behaviour was thanks to a miraculous piece of equipment which had arrived out of the blue for his use. We, the family, students and friends, had done as much as we could to make him comfortable: we had tried to keep the rota of attendance constant with no more than a gap of a few minutes here and there, and I had bought a television for his room. Nothing could compensate for the terrible loss of the power of speech, however, and just when that loss appeared depressingly irremediable, the new means of communication arrived unforeseen and unannounced. In fact it was the result of Judy’s tireless efforts behind the scenes. She recalled having seen a feature about communication for the severely disabled on the BBC science programme, Tomorrow’s World, and after a global search for information had managed to locate the British inventor of the equipment. She brought him and his invention – a set of electrodes which when attached to the head could measure rapid eye movement – to the hospital, and persuaded a Cambridge-based computer firm to contribute the necessary computer free of charge. Stephen balked at the intrusive discomfort of the electrodes attached to his temples, but when one of his students adapted the mechanism to a hand-held control box, he was more willing to experiment with the device.

  The computer was loaded with a programme which combined dictionary and phrasebook. Using the control, the operator could scan the screen for the words he wanted to use: as he clicked on each one, it would take its place in the sentence which was forming in the lower part of the screen where the observer could read what the operator was wanting to communicate. Frequently used phrases could be incorporated complete, and verbal endings could be added to infinitives as required. Initially it was a slow, laborious and silent way to communicate, requiring patience and concentration both of the operator and the observer. I found that, given one or two words to point me in the right direction, I could often interpret Stephen’s thoughts telepathically and save him the bother of tapping them all out, though often he insisted on writing out the whole sentence to give himself practice. Once his hand and finger muscles had recovered some movement, the new device absorbed much of the tedium of that final period in hospital. Albeit painstakingly, he began to master the novel technique which allowed him once more to reach beyond the drab surroundings of his hospital room and make contact with the outside world. He could begin to talk to his students about physics again and he could begin to experiment with writing, as well as directing his own medical care.

  Having set the wheels in motion for raising money, Laura Ward and I embarked on the search for nurses. Neither of us had any experience in interviewing or employing staff, least of all nurses, but I hoped that the various social-service departments in the hospital and in the community would give us support and advice in this process. Many social workers and nursing officers called, and sat chatting and drinking coffee while they talked about their pet animals and suchlike. The amount of useful information I gleaned from them could have been consigned to the back of a postage stamp. Laura and I were left to advertise and engage nurses, and then set up a working rota of three eight-hour shifts, as best we could.

  Laura repeatedly placed advertisements in the local newspaper and dealt with the responses initially, asking for references which she then followed up. As time was short, we decided to interview all the candidates who showed any suitability before receiving references. They all seemed plausible, likeable even, and I was in a hurry to set up the nursing system with as many nurses as possible, so that Stephen could come home. I assumed that nurses were by nature dedicated and idealistic, and that I could trust them. I explained the situation as best I could and made it clear that, although we wanted Stephen to be able to live at home, it was important that the home, also the home of three children, should not be turned into a hospital. I expected to treat nurses as guests in my house, and in return I assumed that they would respect our right to privacy. What a vain hope that was!

  Even among the people we had interviewed and liked, my preconceptions of idealism and service were not always well based. When the references started trickling in, we had to discard many of the candidates we had thought to employ. Some were said to be slovenly, others unreliable, a few even criminal. How was it, we wondered, that there was no central regulation of the movements of this last group, when the jobs in home nursing for which they would be applying would almost all, by definition, take place in vulnerable and delicate circumstances? We were still left with a handful of good candidates, even after eliminating the undesirables but, alas, when Laura wrote to the promising applicants offering them work, a depressing number either declined to reply at all, or replied saying that they had found other jobs or that they did not think the situation suitable. To our own deep dismay, there were some eminently suitable people whom we had to turn away, on the advice of Stephen’s doctors, because of their lack of training in tracheotomy technique.

  The alternative was to employ agency nurses. The severe disadvantage of agency nurses was that the essential element of continuity would be lost: a different nurse at every shift could only add to the considerable frustrations which Stephen, and the rest of us, were bound to experience. Equally prohibitive was the financial aspect: agency fees, over and above the nurses’ pay, would fritter away the MacArthur grant in no time at all. The money had been approved, despite some understandable suspicion on the part of the Trustees about the role of Britain’s much vaunted National Health Service. Why, they had wanted to know, was Stephen’s care not covered by the NHS? I had to choose my words carefully in explaining how the American-inspired monetarist policies of the Thatcher government – which had been in power for the whole of Tim’s lifetime – were destroying our already overlo
aded, free NHS. The truth was that in encouraging a new self-seeking materialism, those policies were destroying not just the health service and our educational system, but the very fabric of society. Indeed Mrs Thatcher had denied the existence of society: for her it consisted of nothing more than a set of individuals with no sense of common purpose. It was an unfortunate time to be ill, unemployed, very young, elderly or otherwise socially disadvantaged.

  A couple of months later, Laura Ward fell ill and had to leave. By great good fortune, Judy Fella, who had already given so much unstinting help, was willing to resume her old post as Stephen’s secretary until a full-time replacement could be found. Judy was more circumspect than I was in selecting nurses, urging caution in the face of my impatience to bring Stephen home. She was wary even of some of the nurses whose written credentials appeared to be impeccable. Indeed, independently, reports had reached my ears about a particular nurse who had been engaged for a trial period; I was warned that although she had been given good references, she had a reputation as a troublemaker, and that there were nurses who refused to work with her because of her apparently unhealthy obsessions with some patients. In the circumstances, I refused to listen to gossip which, in any, case might be maliciously inspired. I knew the nurse in question by sight; she was a mother and I had seen her at the school gate. She struck me as reliable and efficient, and because she was a regular churchgoer, I felt that I could trust her.

  During the month of October, I brought Stephen – with a hospital nurse in attendance – home from the hospital each Sunday afternoon. It was a delicate, worrying undertaking. Sometimes the change of atmosphere would frighten him and precipitate choking attacks. He was still very weak and coughed a great deal. The mini-vacuum cleaner was often in use, clearing the sputum from his chest. Sometimes we would have to return to the hospital before the afternoon was out, because the strain was too great for him; occasionally he would relax and enjoy being at home, though I sensed that he found the outside world intimidating after three months’ incarceration. In those three months of crisis, his indomitable instinct for survival had stubbornly maintained its hold on life. Now everything looked strange and unfamiliar to him, as if he could not trust what he saw. Part of him wanted to re-enter the flurry of unpredictable normality, part of him wanted the predictable security of the hospital. Nevertheless a date, Monday 4th November, was set for his discharge.

  In those three months since early August, I had escaped for just one evening’s respite from the harrowing routine in order to attend the London debut of the Cambridge Baroque Camerata on 1st October. The evening was warm after a hot, sunny day, giving London a carnival atmosphere in the midst of which I felt alien and uncomfortable. The concert, played to an appreciable audience, went well, though the atmosphere lacked the buzz of excitement which attended the orchestra’s full houses in Cambridge. It was a mystery how Jonathan had succeeded in putting it on at all, since his every spare moment had been spent either in the hospital looking after Stephen or at West Road looking after the family. Unruffled, he had calmly pursued his own activities – organization, administration, practice and rehearsals – late into the night, tucked away in his own house. As he performed and directed beneath the lights on the stage of the Queen Elizabeth Hall, always with an unassuming simplicity and understated elegance of style, no one could have guessed at the pressures of the preceding weeks. I was glad to be there to witness his success, yet I was smitten with guilt at having left Stephen forlornly behind in hospital, sitting out of doors in the autumn sun on a bare patch of ground which euphemistically called itself a garden.

  By the end of October, the situation was different: Stephen was much stronger, but I was completely exhausted. I had developed chronic asthma and I slept badly, increasingly dependent on sleeping tablets and also subject to welts which came and went, producing sore tingling spots on the palms of my hands and in my mouth. All these were, of course, nothing more than the symptoms of severe stress. The doctors recommended a break, even if only a weekend, before Stephen’s return home. In September, Robert had left Cambridge to spend his gap year in Scotland. He went to live temporarily with the Donovans outside Edinburgh and started working on the shop floor at Ferranti, where he learnt basic engineering techniques under the eye of an exacting foreman. Eventually he moved into digs in Edinburgh. It was not an easy life for an eighteen-year-old, and I feared that he was not looking after himself properly. The last weekend before Stephen’s return home – which also happened to be the first weekend of half-term – was an opportune moment to get away. I could benefit from a change of air and routine, calm my stinging nerves and see Robert’s circumstances for myself. I was comforted to find him in good form – and Edinburgh was at its glorious, autumnal best. But three days, however sunny and bright, however clear and crisp, however stimulating with new sights and sounds, were scarcely enough to erase the incessant, intense, traumatic strain of the past three months.

  Not three days nor three months nor even three years could have prepared me, or anyone else, for what was yet to come.

  4

  Mutiny

  Stephen returned home in the early afternoon of 4th November. It was like bringing a new baby home from hospital. There reigned a sense of excitement tinged with nervousness, a protective fear lest the helpless, fragile being might suddenly cease to draw breath within moments of entering the house. Stephen, too, was tense and nervous, suspicious of the competence of the nurses engaged to care for him and anxious about every speck of dust in the atmosphere which might upset his breathing. He had little respect for the intelligence of other people at the best of times. Now, at the worst of times, he was inclined to regard them all as morons. His fears were warranted, but not altogether for the reasons one might have supposed.

  The nurse who came that first afternoon was herself unwell; she was little more than an elderly waif and, although she fulfilled her duties admirably, she rang afterwards to say that she would not be able to come again as the strain was too great for her. This was a bitter blow, because that particular nurse had been booked for many of the twenty-one weekly shifts. There were others like her, pleasant, well-meaning people who could not cope with the stress. The agency was the only recourse, whatever the cost. For the next few weeks, as Judy and I tried to shore up the collapsing rota with a frenzied round of advertising, interviewing and instructing of prospective candidates, the agency provided nurses of varying degrees of competence. In fairness, these nurses probably had little advance notice of what would be expected of them. Never were Stephen’s worst anxieties – and mine – more fully justified: the agency sent a different nurse on every occasion. Although generally they were well intentioned and well qualified, none of them easily understood what was required. Either Jonathan or I spent the whole shift repeating the same instructions over and over again.

  Some nurses never mastered the angle of the cup to prevent tea from dribbling down Stephen’s front into the tracheotomy tube or onto his clothes. Some did not chop his food into small enough morsels, others mashed it to an unacceptable purée. Some tried to give him his pills in the wrong order. Some jogged his hand on the joystick of the wheelchair, sending him off into a spin. Others made a complete shambles of the bathroom routine. Despite their medical experience, they were all terrified of the tracheotomy tube in his throat and were nervous of using the suction unit. Very rarely did the same nurse come back twice. When occasionally one of them was brave enough to cross the threshold for an encore, I greeted him or her as a long-lost friend in my relief at not having to repeat the whole procedure until I was sick of the sound of my own voice. I tried hard to be patient and reassuring, but my nerves were on edge, bristling with exhaustion, worry and dejection. Stephen’s frustration was understandable, of course, and he made no attempt to conceal it.

  If the daytime routine verged on the impossible, at night the problems were of a different order. Once in bed, Stephen no longer had the use of his computerized means of communicati
on and was again deprived of speech. There were just two devices to help him. One, an alphabet frame, must have been the stock-in-trade of occupational therapists in the Dark Ages. The alphabet, in groups of large letters, was displayed around a transparent frame: Stephen was supposed to fix his eyes first on a group of letters, then on an individual letter within that group to spell out his needs letter by letter. The attendant was supposed to follow his eye movements and construct his meaning from them. The device demanded extraordinary patience and remarkable powers of deduction from all concerned. I tried to simplify the procedure by developing a shorthand code so that Stephen only had to focus on one letter for his meaning to become apparent. Either my code got lost in the muddle in his room, or the nurses thought they could do better; in any event, my invention did not last long.

  The other device, which eventually superseded the alphabet frame and marked a considerable technological advance over it, was a buzzer. All night Stephen would hold the control in his hand, in much the same way as he held his computer control by day, and would exert pressure on it to illuminate a small box where any one of a limited number of commands would appear in sequence on a panel to indicate his needs. For a long time, even when he was in good health, it had been difficult to settle his rigid limbs comfortably in bed, and now that he was seriously ill the process took most of the night. In those early months I would stay with him until I was confident that he was well settled, since I knew that he was afraid of being left with an unfamiliar nurse. Then at two or three in the morning I myself would fall into bed, often to be woken soon after by the night nurse, who found that she could not cope alone.