Travelling to Infinity (54 page)

The major share of my energies and my time were devoted to Stephen. I drank every sip of water with him, ate every spoonful of food and breathed every gasp of air. When my strength failed,
Jonathan shared the burden, quietly and always reliably available in the background. What little time and energy I had left, I gave to my children and to my pupils. Teaching was my one opportunity
to concentrate for a few hours a day on other matters – the time when language and literature could fill and enliven the vacuum created by despondency and crushing weariness. The pupils of
that year became very special to me. Generally they showed an exceptionally mature understanding for teenagers, and from them I received the fulsome appreciation which strengthened my resolve to
continue teaching, come what may, so long as I was capable of doing the job properly. It was essential to my own ragged mental health.

Stephen did not view my modest attempts to keep up my intellectual interests in the same light. He had suffered, and was still suffering, a horrendous ordeal, and was still very frightened; like
Lear, he was child-changed – into a child possessed of a massive and fractious ego. On the one hand, his pathetic physical state expressed all too clearly his need for constant loving
reassurance; on the other, he made himself inaccessible, barricading himself behind defiance and resentment. From being authoritative in the past, he became authoritarian, even – or perhaps
especially – with those of us who had been through so much with him. He was indignant at some of the decisions I had been forced to take in family matters during his period in hospital, and
would insist on his rights as a matter of principle. It was natural that he would want to reassert himself, but no one was disputing his right to be king of the universe and master of the house. It
was difficult therefore to understand why he seemed to want to make the daily routine even more fraught than usual by means of various disobliging ploys, which usually involved deliberately
stationing his wheelchair in the most obstructive position imaginable, or by disputing other people’s right to privacy, particularly Lucy’s. She and I were very close companions. Her
open character, brimming with enthusiasm, and her independent spirit were endless sources of strength and encouragement even in the depths of despair. She and I talked at length, discussing all
manner of subjects without constraint. It was obvious that in our extraordinary situation she needed space to herself. Her room had to be respected as her sanctuary, away from the constant
commotion caused by nurses and wheelchairs. She was as intensely loyal to her father as she was to me, but she longed for privacy, away from the prying eyes, listening ears and gossiping tongues of
the nursing staff. That privacy was constantly denied her.

I recounted my dismay at Stephen’s apparently unreasonable attitudes to a doctor friend, who replied, “Just think, Jane, what he has been through! He nearly died, he was kept alive
by machines and drugs. Can you tell me that all that would have no effect on his brain? There must have been times when his brain was starved of oxygen and it’s more than likely that that
shortage caused minute, undetectable lesions which are now affecting his behaviour and his emotional reactions, although, thankfully for him, his intellect is intact.” Another friend, a
senior nurse in a hospice for the victims of incurable degenerative diseases, was convinced that the families of those motor-neuron-disease patients struck down in the prime of life rather than in
old age were the ones who suffered most anguish. In one sense these opinions and advice were comforting. They implied that Stephen was not completely responsible for his actions and that it was not
just his excess of innate egoistic energy that was determining his lack of consideration, but the combined effects of motor-neuron disease and the recent trauma. These opinions, however, bore
little weight elsewhere, even among medical circles, since it was apparent to all that, intellectually, Stephen had come through hell unscathed.

That, nevertheless, was not the full story. Judy, Lucy and I were well aware that Stephen’s egoism was being fed and urged on by his nurses. I might as well have voiced my concerns –
about keeping the home a happy place for all the family and not allowing it to become a hospital – to a concrete wall, for all the impact these concerns had on the nursing staff. They were
indifferent to the fact that the house was also home to a shy, sensitive six-year-old and a spirited, intelligent teenager immersed in O-level studies. One of the very first nurses turned the whole
house inside out as soon as she stepped through the front door. Fretting at the lack of sterility, she scrubbed everything in sight, trying to bring our home up to intensive-care standards, while
Eve, who continued to give valiant service washing, cleaning and hoovering daily, watched incredulously. “She’s daft!” was Eve’s comment. Finally the new broom decided that
it was too stressful to work in such an unhygienic atmosphere and left.

There were, it has to be said, nurses who were dedicated and perceptive, the most exemplary being Mr Jo, as we called him, who not only fulfilled all his nursing duties but occasionally brought
us the most fragrant curries on Sunday evenings. Generally the dedicated people were older women – or men – trained in a more disciplined age, or people who had achieved a higher level
of education than the norm, or people who were not strangers to problems themselves. There were others of similar ilk who promised to be as dependable but who, in the event, found the physical
strain too much for them. For most, the words “professional discipline” and “understanding” were meaningless, and self-interest was paramount. Our tales of the harrowing
months before their arrival meant nothing to them, nor did they give a moment’s thought to the stress that we lived under all the time. A seven- or eight-hour shift might be stressful, but
the nurse who performed that shift could go away to recover in his or her own home. That was not an option open to members of the family.

One common problem was that nurses, like social workers before them, were easily deceived by our surroundings. Because we lived in a large house, they supposed we must be super-rich. Discreet
attempts to explain that we rented our flat from the College fell on deaf ears. None were deafer than those of the nurse who misread our outward circumstances and Stephen’s professorship as
evidence of wealth and power. Late one evening she came to me in the kitchen as I was putting out the breakfast things and brazenly demanded that I obtain a mortgage for her from the University.
Not sure that I had heard correctly, I asked her to repeat her request in front of Stephen, who was already in bed. We went into Stephen’s room where, standing beside the bed, she repeated
what she had said. I explained that there must have been some misunderstanding as I had no influence with the University and was not in any position to obtain a mortgage on her behalf. Whereupon,
at midnight, she started screaming and writhing, stamping and beating her chest, before whirling into a frenzied war dance round Stephen’s bed. I ran to the phone and rang Judy, who came
straight away. She smartly but tactfully removed the wailing banshee, who stood screeching her protests and threats of litigation out in the drive, while I rang the agency for a replacement.

Another nurse, a sad, lonely woman whom I befriended, soon turned out to be an alcoholic. She not only helped herself to judiciously measured thimblefuls of liqueur from our modest assortment of
spirits stored at the bottom of the kitchen cupboard, she also picked up any loose change lying around. When she suddenly left, the taxi driver who drove her to Heathrow happened by chance to be an
acquaintance of Judy’s. He reported back that the nurse had not only paid his fee – some £45 – in two- and five-pence pieces, but had spent the whole journey regaling him
with the intimate details of life in our household. That nurse might well have been party to everything that went on under our roof, because privacy was non-existent. It was virtually impossible to
have a private, let alone intimate, conversation with Stephen – or anyone else for that matter – without first making an appointment and asking the nurse on duty to be so good as to
leave the room for five minutes.

Because of the scarcity of time and the slowness of communication, I got into the habit of preparing what I wanted to say to Stephen in advance. I hoped that by presenting him with a succinct
and logical argument, I could simplify the matter, be it financial or family, under discussion. Stephen objected to this, implying that yet again I was denying him his rights. He would insist on
returning to first principles and would dispute my reasoning at every stage, sure of the superiority of his own arguments. Thus, minor matters became major issues, and the cheerfully optimistic
frame of mind in which I had entered his room would quickly disintegrate into defeat and disillusionment. As Stephen recovered his power of speech, I became nervously withdrawn again, unsure of
myself and so uncertain of my opinions that I ceased to voice them, as much the victim of psychological pressure as Stephen was the victim of illness. I observed this process as it happened, yet
there was nothing I could do to stop it, because it was part and parcel of the situation. I was caught in a trap and began to have nightmares two or three times a week. The nightmare was always the
same: I was buried alive, trapped underground with no means of escape.

In a last-ditch attempt to stem the tide of nursing insurrection, Judy and I decided to provide the nurses with uniforms in response to a request from some of them who complained that their
clothes were getting spoilt by splashes and spills of fluid. One of the more senior of them had access to a supply of secondhand white overalls and brought us a dozen or so. A white overall worn
with a belt and buckle would look smart and official; the agency nurses always wore uniform, so it seemed appropriate for ours to do so too. A uniform would also clearly draw a line between the
nurses and the family and, we hoped, instill some sense of professional discipline. Stephen however refused to let his nurses wear uniform: he wanted to maintain the illusion that his attendants
were just friends. Thereafter nurses had free rein to wear whatever they liked. Sometimes their dress and makeup would have been more appropriate to a street corner in Soho than to the home of a
severely handicapped Cambridge professor and his family.

Lucy soon became used to having the newspaper whisked from under her nose by the duty nurse, as she sat eating her breakfast before school in her O-level year. It would then be ceremoniously set
up in Stephen’s place to await his arrival some ten minutes later. Quickly, the rest of the family became second-class citizens, as if we were the lowest of the low, crouching on the bottom
rung of a ladder, at the top of which the Florence Nightingales administered to the master of the universe. In between there were the several echelons of students, scientists and computer
engineers, all of whom were obviously more important than we were. When one of the nurses, Elaine Mason, asked why I did not give up teaching and take up nursing, learning to use the suction
machine so that I could look after Stephen myself, it was the clearest indication yet that the rest of us, who had no medical qualifications, were being consigned to a despised obscurity. The
facility with which Elaine Mason used her evangelical certainty to gloss over profound issues as being the will of God was disconcerting. When she airily announced in Stephen’s hearing that
looking after him was so much easier than bringing up her own two sons, I hardly liked to point out that she was nursing Stephen for only just a couple of sessions a week. Such remarks were all too
reminiscent of the facile Hawking attitude that I had encountered in the past. As she was an efficient nurse, I tried to regard her insensitive pronouncements with the detachment they deserved.

In the face of such sanctimonious pseudo-philosophy, I found even greater solace in my attachment to St Mark’s. I listened to Bill Loveless’s sermons intently and also to those of
his fellow preacher, a scientist and former missionary, Cecil Gibbons, who at an advanced age made it his duty to keep abreast of scientific developments and interpret them in a religious context.
They both always had something pertinent and measured to say to me personally, whether about suffering, about man’s place in creation or about good and evil, and under their guidance I began
to formulate my own simple philosophy about some of the stumbling blocks to faith, principally by understanding that free will is a prerequisite of the human condition. If belief in God were
automatically decreed by the creator, the human race would simply be a breed of automatons with neither evolution of thought nor motivation for discovery. Evil, I reasoned, was often reducible,
even if distantly and hazily, to human greed and selfishness – predatory animal instincts, dictated by nature for survival in a distant evolutionary past, long before the development of finer
intelligence and the dawn of conscience. Selfish, instinctive reaction, the root of evil, is outside the reach of God precisely because free will prevents His intervention. God could not prevent
suffering, but He could alleviate its effects by restoring hope, peace and harmony. There was still the stumbling block of illness, degenerative, incurable, paralysing and devastating, which did
not fit into this system – unless, that is, illness also sometimes happened to be the result, however remotely, of human fallibility, an error in research or treatment, in a chosen way of
life or in the environment. If the cause of Stephen’s illness was really a non-sterile smallpox vaccination given in the early Sixties, it might be accounted for thus. As for the present
chaos, one could only hope that, by keeping faith, by still trying to give of one’s best, a brighter, calmer day might one day dawn.

On the administrative front, Judy was beleaguered. She would prepare an agreed rota of nursing shifts a month in advance, only to find, in the event, that her careful organization had been
mysteriously overturned and that the working rota bore little resemblance to the one she had prepared and distributed. Neither she nor I would have any idea whom to expect at any given time; the
system would inexplicably break down, and agency nurses had to be called in. Shattered and demoralized by all the unforeseen – and often unnecessary – complications which had
accompanied our best efforts to enable Stephen to return to the family and the community, Judy and I called a series of meetings to try and settle various differences once and for all. Word had
reached her indirectly that, quite apart from the interference in the organization of the rota, trouble was being whipped up among the staff on issues which had no relevance to our private nursing
scheme.