Travelling to Infinity (42 page)

Music accompanied the baby’s gestation throughout the winter. Jonathan, our self-appointed entertainments officer, frequently brought home tickets for concerts, many of which were in the
newly opened university concert hall only five minutes away. We sat on the stage alongside the performers in full view of the audience, since there was no other provision for wheelchairs. Often the
performers, a host of celebrated musicians, from Menuhin to Schwarzkopf, would delay their exits after their curtain calls to come over and greet Stephen. At home I sang whenever I could,
practising my repertoire for its first public performance. The baby responded with animated appreciation, kicking hard in time to the music. We were rehearsing with two musical goals in view. One
was my entry in the Cambridge Competitive Festival in March, the other in February was a concert we and some musical friends of Jonathan’s were giving at home for charity. We invited as many
people as would fit into the living room and, in the tradition of the numerous parties in our establishment, laid on food and drinks in the interval. Afterwards, in an advanced state of pregnancy
and an even more advanced state of nerves, I stood up to give my first public performance – other than the occasional solo in church. It consisted of two folksongs by Benjamin Britten and a
couple of songs by Fauré; which were also to be my entries in the competition. The audience were kindly appreciative and on their departure made generous donations to our two charitable
causes, leukaemia research and the Motor Neuron Disease Association, which had been recently founded and for which Stephen had become the Patients’ Patron. When, long ago, his condition was
diagnosed, we were told that it was very rare, that little was known about it, and that since so few people suffered from it there was no basis for a support group. None of this was true. Through
the Association we discovered that the illness – also known in America as Lou Gehrig’s disease, after a sportsman who suffered from it in the Thirties – was in fact quite
widespread. At any one time there could be as many diagnoses of motor-neuron disease as there were sufferers from multiple sclerosis, which until then had received much more publicity because there
were more survivors. Motor-neuron disease ran its course much more quickly – usually within two or three years – distorting the statistics and leaving patients and their families
crisis-ridden, with neither the time nor the opportunity to set up support organizations or self-help groups. On the founding of the Association, some information at last became available. It
emerged that motor-neuron disease could erupt in one of two forms. The acute form paralyses the victim’s throat muscles, precipitating an early death. The rarer form, the one which had
attacked Stephen, resulted in a creeping paralysis of the voluntary muscles of the whole body – including eventually the throat – over a longer period, perhaps five years or, at the
outside, ten. Stephen’s survival for sixteen years since the time of diagnosis in January 1963 made him a medical phenomenon, as unexplained as the illness itself.

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 summoned 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:

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.