Travelling to Infinity (43 page)

My visits to the hospital had to be timed precisely in between the week-old baby’s feeds. Once he was fed, changed and settled, I would dash off to spend the next few hours at
Robert’s bedside, reading books and playing games, before dashing home again for the next feed. This became my routine until Robert was discharged from hospital. Stephen’s mother did
her best to keep the home fires burning, shopping and cooking wholesome meals, but there was too much for her to do alone. Never was Jonathan’s help more urgently required. He looked after
Stephen, he did the heavy shopping, he took Lucy to school and he visited Robert, enabling me sometimes to take a break from a rigorously pressurized routine. It was unfortunate that he had only
been introduced briefly to Stephen’s mother before this crisis occurred. Since her visits to Cambridge had been much rarer than my parents’, the opportunity had not arisen. I realized
that I could not expect any of the Hawkings, unlike our close and tactful friends, to divine the significance of Jonathan’s presence in our household. But I hoped however that I had earned
their respect well enough over the many years in which I had cared for their son for them to trust me at least to try to do my best for him and for the children in the present demanding situation,
and I trusted that they might muster some sympathy or discreet toleration. Above all I wanted to reassure them that I was not about to abandon Stephen or break up the home, nor was Jonathan
encouraging me to do so.

There was no suitable opportunity to broach the matter to Isobel. When eventually she and I found ourselves alone in the house with the new baby one afternoon, she took the initiative, catching
me unawares. She looked me straight in the eye. “Jane,” she said, adopting a stentorian tone, “I have a right to know whose child Timothy is. Is he Stephen’s or is he
Jonathan’s?” I met her steely gaze, dismayed that she had so readily jumped to conclusions – and the most uncharitable conclusions at that. All the discipline with which Jonathan
and I had forced ourselves to try to sublimate our own desires and maintain a discreet relationship was being trampled underfoot. The simple truth was that there was no way that Timothy could have
had any other father than Stephen. Isobel was not content with this statement of the truth; instead she carried on, as if riding the crest of a wave, “You see,” she went on, “we
have never really liked you, Jane, you do not fit into our family.” Later she apologized for her outburst, but from my point of view it was too late.

The following day Frank Hawking responded to his wife’s urgent summons and came over to Cambridge in the early morning. I watched from the house as, together, they went out onto the lawn
and disappeared into the shrubbery, engaged in conspiratorial conversation. Soon afterwards they left, huffily defiant, scarcely bothering to acknowledge me at all. The combination of so many
traumatic events in such a short space of time after the birth had the predictably disheartening effect of diminishing my ability to feed the two-week-old baby, who was emerging from his post-natal
stupor, exercising his leonine lungs and his vocal chords with hearty enthusiasm. Stephen brooked no opposition in resolving the situation in his own fashion. He dragooned eight-year-old Lucy to
accompany him into town and help him shop at Boots, where he bought an array of bottles, teats, sterilizing fluid and dried milk powder. Thus ended my pitiful attempts to nurse my third child and
thus commenced a new chore for Jonathan. Every evening before leaving West Road for his own home, he would make up the next day’s supply of baby milk and store it in the fridge, ready for use
on demand.

Some weeks later, as I was making the preparations for Timothy’s christening in early June, Stephen received a letter from his father. The letter announced that he had been in touch with
an American team of doctors in Dallas, Texas, who were treating motor-neuron disease with a new drug. These doctors were issuing an invitation to Stephen to become one of the first patients to test
the drug. It seemed that it was a fait accompli. We would all, Stephen, Robert, Lucy, Timothy and I, with the mere waving of a wand, move lock, stock and barrel to Texas, where Stephen would
undergo an extended course of treatment lasting months if not years. The letter was passed to me without comment, without explanation, the tacit implication being that the decision rested on my
shoulders.

My head swam and my heart sank at the complexity of the responsibility that I was being asked to assume. First and foremost, if there was a chance of a cure for Stephen, I could never deny him
that chance. Yet I was only too aware that the demands on the family and on me would be monumental, far in excess of anything we had ever experienced before. The children would be summarily removed
from the schools, the environment and the home where they were happy and secure, and would be dumped down in a huge, strange, American city. This would not be Pasadena. It was not clear where our
income would come from, nor was it clear how our housing or transport would be organized. I, the mother of a six-week-old baby, was being asked to uproot the whole family, the three children and
their paraplegic father, transport them a third of the way round the world and set up home for an indefinite time. There was no indication of how I was to achieve that objective, no promise nor any
likelihood of help in this mammoth task other than young Robert’s, nor any certainty that the treatment would be successful. Painful memories of Seattle in 1967 came crowding to the fore,
multiplied a thousand times by the experiences of the past several years.

As the date of the baby’s christening approached, I could not keep this most painful of dilemmas from my parents. The christening party divided squarely into two opposing camps. In a
situation which required extreme tact on all sides, the Hawkings stood in one corner of the living-room, ostracizing the rest of the gathering – my parents, Tim’s godparents and their
families, and a few friends. The atmosphere was so unbearable that at one stage I left the room and took refuge in the bedroom. My father followed me, only too conscious of the intolerable pressure
I was under. An intellectual match for the Hawkings but devoid of all affectation or snobbery, he pulled a piece of paper from his pocket. “Jane,” he said, “just have a look at
this, will you? If you approve, I am going to send it to Frank Hawking.” As I read, gratitude for my father’s intervention flooded through me: the letter was a masterly resolution of
the dilemma, without in any way jeopardizing my loyalty to Stephen. Quite simply it stated that we all wanted Stephen’s best interests, but that the Hawkings must be aware that the care of
two young children and the new baby – their grandchildren – in addition to the burden of Stephen’s care, made it impracticable for me to travel to Texas. He suggested that if they
were convinced of the efficacy of the treatment, they should consider accompanying Stephen to Texas themselves. Yet again my father, sometimes exacting, always honourable, always unpretentious, had
by quiet, intelligent application behind the scenes come to the rescue. The letter was sent. He did not receive a reply.

After so many years of thinly veiled tolerance, they had expressed their dislike of me with caustic bluntness when I was at my lowest ebb, soon after the birth of my third child, while my eldest
child was critically ill. Their dislike had emerged and spread into unconcealed hostility. It was stupid of me not to have recognized their animosity and resigned myself to it sooner; it was stupid
of me to have lived in innocent hope of better things. As they were Stephen’s closest relatives, I had been bound to try to get on with them as best I could. In fact for this very reason, I
was still obliged to maintain a veneer of civility. Whether I liked it or not, the close blood tie was the one invariable factor in this predicament.

The following winter news came that the Texan team were offering to send their treatment to Cambridge. However the consultant neurologist at Addenbrooke’s stated quite firmly that the
treatment was untested, unproven and inappropriate for motor-neuron disease. He suspected that Stephen would be used as a guinea pig, and that the researchers were looking for the scientific
respectability and publicity associated with his name, possibly to attract funding. The treatment would have to be administered in hospital and the time involved would be considerable, with minimal
chance of a positive outcome even in the short term. Motor-neuron disease had already done its worst to Stephen; there was little more that it could do and it was a well-known fact of medical
science that the body was not able to repair damaged nerve tissue. The greatest risk to his survival these days came from pneumonia, not motor-neuron disease per se. The proposed treatment would be
a waste of Stephen’s precious time and scarcely more than one of those chimeras against which Frank Hawking had himself warned so decisively in the Sixties.

Perhaps I might have been less distressed at the behaviour of the Hawkings had I realized how implicitly I could rely on Jonathan’s family. With unassuming goodness, they
dedicated themselves tirelessly to other people, whoever they were, whatever their origins. They made no distinction between family, friends, parishioners or strangers. Anyone in trouble, rich or
poor, could arrive on their doorstep by day or by night and be assured of help and a sympathetic ear, and probably a filling meal into the bargain. I could not believe that any parents, however
well-intentioned, would welcome the sort of family that their eldest son had become involved in. I was wrong. On our first visit to their rectory, they treated us, Stephen, the children and me, as
if we were the most welcome visitors, as if they were really pleased to see us. Never did they pass even the slightest hint of judgement on us or on our situation.

Like Bill Loveless, John Jones had been a late ordinand. He had come to Cambridge to train for the ministry, after his first career as a dentist in Warwickshire. In this mid-life change of
direction, he was encouraged unequivocally by his wife Irene, so like my own mother in her quietly assured faith. From their hilltop vantage point, just outside Cambridge, they tended to their
flock in the surrounding fenland and worshipped with a practical tenacity which would have been extraordinary in a young incumbent, let alone in one of advancing years. Not only did John, with
Irene’s assistance, look after the souls in his charge in Lolworth and its associated parishes, he also mended the fabric of the medieval building entrusted to him by an impecunious diocese.
In the early Eighties the tower of Lolworth church was badly in need of repairs. As there were no funds available to repair it, John and Irene donned hard hats and overalls and set about removing
several tons of bird droppings from the inside before relining and strengthening the structure themselves.

I found it unbelievable that these people, not related to us in any way, could find any good reason for wanting to welcome me and my family, nor could I understand why they should show such
genuine interest in us and so much concern for us. They spread the light of kindness, sympathy and selflessness in darkness. It was not only Jonathan’s parents who took us to their hearts
but, inexplicably, his entire family as well, his aunts, uncles and cousins, his brother Tim and sister Sara. Formerly a physiotherapist, Sara was blessed with the same sort of intuitive good sense
as Caroline Chamberlain in her approach to severe disability; she knew the toll that a paralysing disease could exact on the immediate family as well as on the patient. Sara and I quickly became
the closest of friends. We were more or less the same age and we had our babies at more or less the same time. Sara’s first baby, Miriam, was born in February 1979, two months before
Timothy.

Thus I no longer had to look to the Hawkings for support. Instead, I began to foster the cool detachment that they had shown for years. Surprisingly, other more distant relatives of
Stephen’s stepped into the vacuum left by their absence. Michael Mair, a cousin of Stephen’s who had been an undergraduate in Cambridge in the late Sixties when Robert was a new baby
had returned to work in the eye department of Addenbrooke’s Hospital. He and his South African fiancée, Solome, a radiographer, were enthusiastic cooks. Every so often they would bring
a delicious, ready-prepared, calorie-rich meal for the whole family. In anticipation of their arrival, Robert and Lucy would stand in the porch, peering through the glass door and salivating long
before they drew into the driveway. Never were those meals-on-wheels more welcome than in the months after Timothy’s birth, as we struggled to get back onto an even keel, desperately weary
from the gruelling effort of steering our little boat through turbulent seas.

The truth was that one adult minder was required to attend fulltime to each one of the less able members of the family. Disabled to the point of not being able to do anything for himself –
except handling the simple joystick controls of his wheelchair and of the computer which he had bought in celebration of Timothy’s birth – Stephen had to have a well-known person,
whether me, Don or Jonathan, in constant attendance. The baby, previously so docile, had begun to assert himself, responding to all the attention lavished on him with huge captivating smiles, so
wide that they could have swallowed us up, but he protested loudly when our attention was deflected elsewhere. On these occasions my mother would laughingly point out his resemblance to his father.
He had certainly inherited Stephen’s cherubic dimples, but also like Stephen his mouth had the comical habit of drooping downwards at the corners to express affronted indignation, especially
when he was hungry. In other respects, though a larger baby, he was the exact image of his older brother. I called them my twins – twins nearly twelve years apart. Indeed more than once,
passing acquaintances would glance at Tim and cheerily call “Hello, Robert!” then in some bafflement would think they must have fallen into a time warp before they realized their
mistake.