Travelling to Infinity (52 page)

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.

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 damage 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.

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.