Travelling to Infinity (53 page)

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 overloaded, 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.

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 communication 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.

Quite apart from the day-to-day and night-to-night problems, the months after Stephen’s return were marked by many other life-threatening dramas. These usually occurred late at night, when
the tracheotomy tube either blocked off or came unstuck. While the nurse tried to clear it or adjust it, I would dial through to the intensive-care unit in search of the doctors who were versed in
the technique of changing it. A dash to hospital and endless hours waiting in the casualty department would follow, until a new tube was inserted and Stephen could breathe again. Since our last
student helper, Nick Warner, a cheerful Australian, had left in the summer and had not been replaced, Jonathan slept in the upstairs room so that he could look after Tim and take him to school
first thing in the morning when I was still recovering from the disturbances of the night.

As Robert had left home, his room, large and airy at the front of the house, was quickly converted into a room for Stephen. It was particularly suitable, because it had a washbasin and adequate
cupboards for nursing and medical equipment – of which we received regular, massive deliveries. There was also plenty of space for an orthopaedic bed, bins, computers, desks, armchairs, all
sorts of other paraphernalia and, of course, the wheelchair. This last item was becoming ever bulkier and heavier. The computer equipment which Judy had acquired for Stephen when he was in hospital
had been superseded by a more sophisticated version, sent from California. The new computer had the added advantage of a voice synthesizer so that Stephen could be heard to speak the sentences that
he typed up on the screen. No matter that the synthesized voice sounded unnervingly like a dalek: Stephen was once again endowed with the power of speech. The husband of one of the nurses, David
Mason, a skilled computer engineer, set to work to adapt the computer and add its several parts to the wheelchair, so that Stephen would no longer be desk-bound but could carry his voice with him
wherever he went. The weighty computer and voice box were strapped onto the back of the chair, and the screen was attached to the frame where Stephen could see it. Once, some time later, when we
happened to come across an industrial weighing machine, we levered Stephen and all his contraptions onto it. The weight of the chair, batteries, computer, screen, various cushions and occupant
amounted to one hundred and thirty kilograms.

There were recurring crises when the newly invented mechanism developed teething troubles, just as there were recurring crises with Stephen’s own state of health. If David Mason were not
called round as a matter of urgency at all hours of the day, then it was our faithful friend, John Stark, the chest consultant, or long-suffering Dr Swan or another duty doctor from the surgery,
who would be summoned at all hours of the night. Physiotherapists were called out at weekends and our local chemist was roused after closing hours. In short, we floundered in an endless state of
crisis throughout November into December, with its usual round of school carol services and other preparations for Christmas. We were again piloting our boat across troubled waters. These uncharted
waters were shrouded in darkness, and we had on board a potentially mutinous crew.