Travelling to Infinity

by Jane Hawking

  Over the course of the next few years, Jonathan and I gave many joint recitals of baroque repertoire for the fledgling Motor Neuron Disease Association in churches throughout East Anglia, managing to raise quite respectable amounts of money, and since Stephen usually featured prominently in the audience, the illness and the Association came to the notice of the public. As a local volunteer, I visited some of the afflicted families in the area, whose lives were being shattered by a diagnosis that had left all of them shocked and bewildered, as it had left us years before. I felt that I had a duty to try and give these families the benefit of our experience, passing on to them the practical techniques we had devised for managing the condition, and pointing to the fact that Stephen, the survivor, was the living proof that the diagnosis was not necessarily a death sentence if one had the will to fight. Perhaps it was because the people I met were all much older than ourselves that they did not seem prepared to fight with the same vehemence. They were hurt and troubled, certainly, but they revealed a much greater calm and acceptance than I expected. The frenzied lifestyle, which had become the mark of our rejection of the disease, was not for them. Instead, they lived quietly, appreciating whatever was done for them, thankful for all the love and care they received from their families, often awaiting their fate with resignation. I trod warily, fearing to trespass on their privacy by introducing bright, well-meaning proposals for exercises, diets, injections or vitamins. There was, it seemed, an element in their lives which ours lacked and which I found myself envying. It was not defeatism but inner peace.

  Stephen’s position as Patron of the Association, and my attempts to help as a fundraiser and volunteer, brought me face to face yet again with one of those ironies of our situation. Once more we were elevated to a pedestal and there we found ourselves aloof. We needed advice as much as anybody, but we could not seek it because the admission of our needs would have been a denial of the confident façade on which other people depended for boosting their own morale. The number of people blessed with the perspicacity to see behind that mask were not many. They included my family, Jonathan and his parents and a few exceptional friends.

  Just before the baby was due, we were fortunate to get to know some new friends of comparable sensitivity in Stephen’s Australian colleague Bernard Whiting and his wife Mary, when they came to one of our musical gatherings. Relaxed and easygoing, Bernard was to give Stephen a hand, in much the same way that George Ellis had in the past. Mary, a classical archeologist, was writing a PhD thesis and working in the Fitzwilliam Museum on a catalogue of the museum’s extensive gem collection. She was no fossilized museum piece. Her flowing, prematurely grey hair framing finely etched youthful features lent her a graceful distinction, like a Raphael madonna. Her appearance was well matched by her personality, for she was both learned and spirited, her interests extending far beyond archeology into art, literature and music, especially baroque music, so that when she and Jonathan met they immediately had plenty to discuss.

  Towards the end of March 1979, Robert, who was in the first year of the Upper School at the Perse, went away to scout camp. I was not at all happy about this camp for eleven-year-olds since it was to be in the corner of a field in north Norfolk, exposed to the biting winds of a reluctant spring. The field, by all accounts, was sodden under a couple of inches of water. There was a fall of snow during the camp and Robert came back exhausted, soaked to the skin and coughing persistently. Stoical as ever, he declared that the camp had been “all right”. After a couple of days in bed, he recovered sufficiently to be able to go away with Lucy to the cottage in Wales, where they were to spend Easter with Stephen’s parents. Meanwhile I made my debut on the concert platform at the Cambridge Competitive Festival, singing the Fauré and Britten songs to Jonathan’s expert piano accompaniment while Stephen smiled his cheerful encouragement from the audience. The adjudicator politely commended the timbre of the voice, otherwise only allowing himself to remark that he realized that my breath control was somewhat inhibited. With the competition over, back at St Mark’s we were rehearsing for the devotional service on Good Friday and for the Easter Festival, at which I was to sing a solo, ‘Now the Green Blade Riseth’, accompanied on the flute by Jonathan’s old school friend, Alan Hardy. After rehearsing in the church in the early part of Holy Week, we were all set for the performance on Easter Sunday.

  The thesis was very nearly finished; all that remained was the mind-bogglingly boring task of ordering the bibliography alphabetically and attending to all the minutiae therein, upon the insistence of my supervisor. Every comma, full stop and bracket had to be in its correct place, otherwise he would not pass the thesis for submission. On Maundy Thursday, with an almighty flourish, I put the final full stop to the final entry in the bibliography, thus bringing to a conclusion thirteen arduous years of seminars, research, annotation, card-indexing, organizing, compiling, writing, editing, footnoting and referencing.

  The next day, Good Friday, during the devotional service, I felt dejected to the point of tears. Perhaps this was a reaction to the emotive force of that particular religious commemoration and the music that went with it, perhaps it was the anticlimactic effect of finishing the thesis, or perhaps I was missing my children, who were to stay with their grandparents until after the baby was born in a week or two’s time. The following day the melancholy lifted. Very strong physical symptoms took its place, leaving little doubt that the baby was going to be born quite soon. I spent most of the afternoon in the garden with Stephen beside me, relaxing in the sun and picking bunches of violets. Don drove us to the maternity hospital early in the evening, but a routine inspection revealed little movement of any significance, so we were sent away again. We called at Jonathan’s house on the way home and stayed for a takeaway curry, inserting ourselves as best we could in among the musical instruments in the restricted space of the living room. As Jonathan and Stephen were partial to curries, he often arranged a takeaway, especially on Sunday evenings when the kitchen, after seven days of churning out three-course meals for all-comers, only ran to scrambled eggs. Exceptionally, this was a Saturday-evening curry and it was an exceptionally hot dupiaza.

  Back at home I spent a most uncomfortable night and, at dawn, woke Don to ask him to drive us back to the hospital. Because Stephen wanted to be present at the birth of his third child, special provision had been made to accommodate him in the delivery room. Joy Cadbury, who presided over the Friends of the Maternity Hospital, had kindly conferred with the matron to make suitable arrangements for the wheelchair. The only space large enough for Stephen and Sue Smith, his physiotherapist, who came in to look after him – plus the medical team, not to mention me – was the delivery room, so I had to spend the rest of the day lying on the hard surface of the delivery table waiting for the birth to happen. Don sat out in the corridor, occasionally peering round the door, while Jonathan wisely took himself off to spend that hot, sunny Easter Sunday at his parents’ parsonage in the country. In such inclement conditions, the birthing processes slowed down to a standstill. I sent messages to Don that he could safely abandon his post in the corridor to attend morning service in one or other of his ecclesiastical locations, and while I lay awkwardly trying to ease my bulk into a comfortable position, I rued the urgency with which we had come to the hospital, especially when I realized that I could have been singing in church. There, Bill Loveless had to announce the cancellation of the musical interlude on account of the absence of the singer who was otherwise engaged.

  The various attempts made to accelerate the birth had the sole effect of turning me into a human pin cushion as the morning slid into afternoon and the afternoon into evening. Don returned and went out again – this time to evensong. While he was away, a crisis developed: the foetal heart, that infant heartbeat that had introduced itself to me many months ago, showed worrying signs of fatigue. While the medical team had their backs turned, preparing their instruments of torture to bring the baby into the world without delay, I hastily su
mmoned all my remaining energies into an almighty push and my Easter child was born. When they gave him to me to hold, my heart went out to him. Wrapped in an old green blanket, his face was blue from the battering he had received. Although he was larger than either Robert or Lucy at birth, he did not display the energy with which they had greeted the world but lay limply, whimpering in my arms. For a moment I was oblivious of the commotion of the cleaning-up operations around us, absorbed by the little creature whom I already knew so well. Then Don burst triumphantly into the delivery room. He was pleased to make the acquaintance of his godson and was even more pleased with himself on account of a little ditty that he had thought up on returning from church. To my embarrassment he would repeat it to everyone he met for several weeks after the event. It went like this:

  On Easter Day,

  the disciples went to the garden

  and found the empty tomb;

  I went to the hospital

  and found the empty womb

  10

  Dissonance

  During the week that Timothy Stephen (the baby’s full name) and I stayed in hospital, Lucy was brought back to Cambridge to meet her younger brother – but Robert was stranded in St Albans for reasons which were not fully explained. Apparently the children had been playing barefoot in the stream in Wales and he had caught a cold. He was coughing again, so badly that when the children called on my parents for tea in St Albans, my mother put him to bed. There he stayed for the next week until Stephen’s sister Mary, the doctor, decided that he was well enough to come back to Cambridge. His return coincided with our homecoming. He nursed his little brother on his knee, sitting in an armchair in the living room, but looked suspiciously flushed and unwell. The mother of one of Lucy’s friends, Valerie Broadbent-Keeble, a respected pediatrician, came on a social call to visit Timothy and me. By coincidence, she arrived at the same time as Dr Wilson, my GP. The two doctors glanced only briefly at Timothy, who had adjusted to the business of living and was glowing with health; Robert, on the other hand, commanded their full attention. Both were visibly alarmed at his state of health and were fairly sure that he was suffering from viral pneumonia. Valerie went away to organize Robert’s immediate admission to the children’s ward at Addenbrooke’s while Dr Wilson wrote out a prescription for penicillin.

  It was a blessing that the new baby was still tired from the ordeal of his birth and consequently slept for long periods by day and, amazingly, by night as well, otherwise the weeks after his birth would have been an even worse nightmare than they actually were. I was needed by everyone all the time. Stephen’s needs were obvious, the baby’s needs were undeniable, Lucy needed reassurance now that there was a rival usurping her place as the youngest member of the family. Above all, Robert was seriously ill in hospital and needed me most. After one night on the children’s ward, he awoke covered in weals from head to foot. Either he had contracted an infectious disease or he was allergic to penicillin. As there was no way of telling which of the two was the cause, he was moved to an isolation ward at the top of the hospital for fear of infecting the other critically ill patients on the children’s ward. In isolation, his meals were passed to him through a hatch, and the medical staff donned gowns, gloves and masks when they entered his room. He was allowed only restricted visiting and the visitors had to dress up in the same protective clothing as the nurses. Bored, lonely and ill, he lay in bed with the tears streaming down his hot cheeks.

  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 w
here 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.