Travelling to Infinity

by Jane Hawking

  The image of darling Lucy standing at the lectern to recite Shakespeare’s sonnet about the marriage of true minds was quite unforgettable. She stood, radiant in cream silk, with her hands clasped under her six-month bulge as if to gain confidence from her tiny, fetal son while Alex, her fiancé, beamed with pride from the congregation. There were the odd distracting moments – such as the horrible scratchy pen which turned my signature on the registers into an untidy scrawl, bringing back humiliating memories of a failed art exam in calligraphy at St Albans High School. Then all too soon the service was over, and Jonathan and I were gliding down the aisle, borne aloft by the strains of Bach’s ‘St Anne Prelude’ and by the joy on the faces of the congregation. We stepped out into the sun – it was the first fine day in weeks – there to kiss and hug all our guests and other well-wishers before setting off at the head of the long, slow-moving motorcade led by our friends from France, to Wimpole Hall for photographs, the reception, dinner and festivities which lasted into the night.

  Jonathan and I were optimistically looking forward to a comparatively normal life together after our marriage. Since then I have learnt that there is no such thing as a normal life. Certainly we lead busy lives in which music plays a major role: I still revel in the choral repertoire and I also continue to give occasional solo recitals to Jonathan’s accompaniment. I no longer teach – there are too many other demands on my attention, but I do manage to make time for dancing, which for so long in the past was not a feasible activity for me either as a practitioner or a spectator. Jonathan and I travel widely: as often as possible we step into that other dimension of rural France, where I work in the meadow garden I created to mark the millennium, while Jonathan plans new musical enterprises – either for The Cambridge Baroque Camerata or for the Choir of Magdalene College, which he has conducted and run for the past five years in his capacity as College Praecentor and Director of College Music.

  Rarely however is there a time when we are not beset by troubles and anxieties. By the summer of our wedding my mother had become very disabled with arthritis, and was able to carry on living at home in St Albans thanks only to Dad’s devotion to her care. Although I visited them regularly, there inevitably came the day when Dad, who was very hard of hearing, could no longer cope alone. Again we had to engage carers privately from an agency, again as no help was forthcoming either from the NHS or from Social Services. Our expectations that paid carers would be professional people were sorely disappointed. With a handful of shining exceptions, many proved to be of dubious character, doubtful honesty, uncertain qualification and inadequate training, and frequently Dad would have to call me to help out on a Bank Holiday when the replacement carer had failed to turn up. Often perplexed by the carers’ idiosyncrasies, as for example when one of them served salad cream on a fruit pie, he never lost his sense of humour – but finally he took the decision to move with Mum into a care home just outside Cambridge.

  Relieved to have them settled nearby and in good hands, I then found myself responsible for clearing and selling their house, a mammoth and exhausting task, but one that I was glad to be able to carry out while they were still alive. Still in full possession of his remarkable intellect, but sorely distressed by the perplexing contrast between his youthful inner self and his disintegrating outer frame, Dad succumbed to pneumonia, exacerbated by Parkinson’s disease, in June 2004. He had refused to go into Addenbrooke’s Hospital because he was so deterred by the terrible treatment Mum had received there only a few weeks previously, when she had had a chest infection. Against all expectations Mum outlived him, and not only celebrated her 90th birthday in March 2006 but also met little George, her fourth great-grandson and our second grandson.

  Like so many of life’s major experiences, there is no preparation for the stage when our parents become our elderly children and we are caught as the filling in a generation sandwich. Nor is there any warning of the trauma one feels at the death of one’s parents, whatever their age. The two people who were always there unconditionally for me, and whom I have been able to depend upon unfailingly all my life, are no longer with me. It is as if a part of me is missing and now, just one week after Mum’s death, I find myself flying halfway across the world in a miserably numbed state of shock. At home there are many encouraging messages of sympathy containing tributes to her selfless character, her genuine concern for and interest in other people, her dedication to good causes, her devotion to her family and her inspiring, deep-seated faith, but the sadness of the past week is very present. It travels with me wherever I go. Previously I could imagine how dreadful it must be to lose a child or a spouse, but I had no notion of how fundamentally shocking it is to lose a parent.

  Lucy’s baby, William, was born by Caesarean section after a long and badly managed birth. A fretful baby, he grew into the most beautiful child with glowing-red hair and bright-blue eyes, but one who failed to learn to talk and whose behaviour went from bad to impossible. When finally the devastating diagnosis of autism was pronounced at the Child Development Centre at Addenbrooke’s, I felt that the faith which had sustained me over many a long year had received a terrible blow. It was hard to believe that after supporting Stephen in his battle with disease for so long, I was now being presented with a different but equally demanding challenge – one that directly affected our lovely talented daughter. But because the challenge involved my grandson and my daughter, I had no option but to rise to it, silently vowing that, come what may, I would do all in my power to overcome the diagnosis of Autistic Spectrum Disorder and bring William to normality. However, I could not meet that challenge without special resources, and those special resources I found again in the rock of faith that had sustained me since the early days of my marriage to Stephen. It is not the same faith as in those days: it is broader, more critical and more sceptical, but it is nonetheless rooted in Christian ethics and finds its spiritual expression in music. The old optimism is gone, but a grim determination, probably learnt from Stephen, prevails in its place.

  When William’s diagnosis was pronounced, we expected at least that some palliative therapy, sound advice and practical help might be offered. We expected in vain. Indeed some appointments with health professionals were entirely negative in their effect. Not for the first time, I discovered that the primary function of the NHS is to deter patients from accessing proper treatment, and of Social Services to ignore middle-class needs. To date all the useful treatments that William has received have been the result of chance encounters, but encounters which were sufficiently coincidental to give grounds for the renewal of faith, because each occurred just as a boost was sorely needed. The first was a beneficial dietary treatment described in a leaflet that Jonathan picked up in Tesco’s. The second, a type of therapy called Neurofeedback, was the consequence of a casual conversation with the manager of my mother’s care home. This treatment seems to be slowly correcting some of the damaged areas in William’s brain.

  Wearing electrodes attached to the skull over the left temporal lobe, the speech area of the brain, he watches and controls his favourite DVDs, mostly about Thomas the Tank Engine, on a monitor. When his concentration wanders, he loses the picture and Thomas disappears from view, but when he activates his brain cells, thereby retraining them and modifying their frequencies, he is rewarded with a clear picture and an audible soundtrack. A measure of William’s development is that he won his primary school medal for progress last term and now behaves like an affectionate, model child, though his speech deficiency is still a major problem. I have been so impressed by this revolutionary new treatment, still in its infancy in this country, that I have founded a charity, NeuroFeedBackUp (www.neurofeedbackup.org), to promote it.

  Six years after the first diagnosis of autism, and through another chance encounter, William is at last being assessed on the NHS. One of the health professionals involved looked in appalled amazement from Lucy to me and back again as we recited the case history, with its all-too-obvious lack of interventio
n by any of the statutory services despite our repeated pleas for help. “What you are telling me,” she said, “is that you, between you, have had to cope with all this on your own, with no outside help?” We nodded. I could have added that, in my experience, this was a long history dispiritingly repeating itself into the next generation. Children with autism, young adults with disabling diseases, the elderly facing the degenerative problems of old age, they or their families have to fight and fight again – usually when they barely have energy for day-to-day survival – for the standard of care to which they are entitled. If a society is judged on the way it treats its sick and its elderly, then ours is a complete and utter failure. In the first edition of this book I was very critical of the Thatcher government on that account. Nowadays I realize that it makes no difference who is in power. No amount of fine words from politicians of whatever persuasion can compensate for lack of proper funding and organization in the National Health Service, and those shortcomings bring unimaginable distress to vast numbers of mostly silent people who struggle to survive as best they can.

  Lucy, once again a single parent, suffered so much distress in bringing William up and trying to combine that task with her career as a writer that finally she moved to the house next door to us when it came up for sale. Despite the Herculean demands on her as a mother with a disabled child, she has managed to publish numerous feature articles in the national press, to run the London Marathon for the National Autistic Society, and to write two novels, Jaded and The Accidental Marathon. She is now looking forward to the publication of her next project, George’s Secret Key to the Universe, a child’s guide to the universe.

  Tim has slowly recovered from the trauma of his childhood. A linguist like me, he read Modern Languages at Exeter and then, after a very demoralizing stint in the BBC, decided to do an MSc in marketing at Birmingham. He has embarked on a career in marketing Land Rovers and has a lovely girlfriend. She is a dancer and her name is Jane, though there the resemblance ends as she is tall and blonde.

  And Stephen... Remarkably Stephen has reasserted his control over his life. His second divorce is in its final stages, and since last summer he has been able to associate freely with us again, coming to family parties, gatherings, lunches and dinners either at our house or at Lucy’s. It has been quite like old times, with plenty of banter and wit circulating round the dinner table while we wait for Stephen to have the last word, and I was delighted to be invited to the Royal Society to witness the presentation to him of the Copley medal, the oldest medal of the Society. As on so many previous occasions I was touched with pride at his achievement, though quite what his science consists of these days I cannot tell, apart from his much publicized recantation of some of his former theories. I must admit I was less happy with his expressed intention, announced on radio on the day of the presentation, of going into space. Less ambitiously but perhaps more productively, he went off to Israel a couple of weeks later, a trip he undertook only on condition that he should be allowed to visit Ramallah and talk to the Palestinians. We gazed in awe at the double-page centre spread in the Guardian which showed Stephen driving his wheelchair through massed hordes of Palestinian onlookers. Before going into space he intends to bring his very special form of ambassadorship to Iran, though whether political circumstances will allow that to happen remains to be seen. On his return from Israel, he spent Christmas with us and we celebrated the New Year with him. Often he joins us for Sunday lunch and frequently we go to the theatre together. He and his mother came to my mother’s funeral, and I was very pleased to see them there. Isobel looks frail but very fit, and is quite irrepressible, even if her memory is somewhat unreliable. In her jovial good humour and ready wit, she reminds me of the positive role model I once considered her to be. A couple of years ago she sent me a letter thanking me for all that I had done for Stephen. It was a noble gesture which helped alleviate some of the more painful memories, restoring our relationship to a civilized footing.

  An enormous new hall of residence stands on the site at 5 West Road, where once we lived in that splendid house and relaxed in its beautiful garden. A few of the most significant trees however are still standing, a result of the campaign which I undertook in the 1990s when I discovered the havoc that had been wreaked in the garden after our departure. I watch as the plane en route to Seattle casts its shadow over northern Canada and releases its fumes over the receding frozen wastes of the Arctic, and I ask myself whether the bulldozing of our garden in the name of progress was not just another small symptom of the mad rush to exploit every available resource that is leading inexorably to the decline of the planet. Like that house and garden our lives were bulldozed, but the essential spirit of the family – truly the affirmation of all my young years – still exists and reasserts itself on those occasions when we can all meet and enjoy each other’s company. Whether the spirit of the earth can eventually recover and reassert itself is the greatest question facing mankind, not unlike that menacing question way back in the Sixties, when Stephen and I first met, of whether the earth and all forms of life therein were destined to be obliterated by nuclear warfare.

  Post Script – May 2007

  Since I finished writing the Postlude, Stephen has completed his zero-gravity flight and returned to earth intact, giving rise to triumphant pictures in the media. The smile on his face as he floated in weightless liberation would have moved the stars. It certainly moved me profoundly and made me reflect what a privilege it was to travel even a short distance with him on the way to infinity.

  Acknowledgements

  In Music to Move the Stars, the first edition of my memoir, I expressed my profound gratitude to all those people pictured within, friends, members of the family, colleagues and students, whose help and encouragement over the years had brought a positive influence to our family life. I also thanked my scientific friends, Kip Thorne, Jim Hartle, Jim Bardeen, Brandon Carter and Bernard Carr for their help in clarifying some of the more abstruse and intractable scientific issues which I had to address in the course of the writing, as well as gratefully acknowledging the advice of Peter Dronke in elucidating some of the finer points of medieval scholarship.

  For Travelling to Infinity, the abridged version of the original memoir, I once again wish to express my thanks to all of the above and add the names of those who have made the new edition possible. Anthony McCarten has been a constant source of encouragement, and in his enthusiasm for Music to Move the Stars, introduced me to Alessandro Gallenzi and Elisabetta Minervini of Alma Books, who took the new project on with eagerness, alacrity and efficiency. I am extremely grateful to them for enabling my memoir to see the light of day again. I am indebted to Mike Stocks who took time from his own highly successful career as a writer to help tidy up the excesses of my prose. His tactful and supportive criticism has been invaluable and much appreciated.

  Finally thanks are due to my family for once again allowing me to delve into their life stories and for showing forbearance and humour during the process.

  List of Illustrations

  1. The Sixth Form at St Albans High School. I am standing second from the right in the back row, next to Gillian Phillips on my left and Diana King on my right.

  2. Wedding in Trinity Hall, Cambridge, 15th July 1965. From left to right: my grandmother, Stephen’s father, my mother, my brother Chris, Stephen, me, Rob Donovan, Stephen’s mother, Stephen’s grandmother, my father.

  3. Little St Mary’s Lane

  4. Stephen with Robert, 29th May 1967.

  5. Robert aged nine months sitting between Stephen and my father.

  6. Lucy’s christening, December 1970.

  7. Family excursion, Little St Mary’s Lane, 1971.

  8. Stephen turning back the waves, Brancaster, summer 1971

  9. Picnic on the Cam with my parents, Kip Thorne, Brandon, Lucette and Catherine Carter, John and Suzanne McClenahan and unidentified scientist with back to camera.

  10. Robert, Lucy and Inigo Schaffer at
play in Little St Mary’s Churchyard 1972.

  11. FRS, May 1974.

  12. Christmas 1975 at West Road with Mary and Thelma Thatcher, my parents, Aunt Effie and Uncle Jack..

  13. Croquet party at 5 West Road, summer 1980 – with Alan Lapedes and girlfriend (end 2nd row left); next to him Gary Gibbons. Front row: Don Page on Robert’s right, Nick Warner on his left and, next to him, Bernard Carr; Bernard Whiting behind Lucy and Mary Whiting seated in front of me.

  14. David Hockney drawing Stephen and Lucy drawing Hockney, Cambridge, March 1978.

  15. Visit of the Duke of Edinburgh, June 10th 1981.

  16. PhD, Albert Hall, March 1981.

  17. Stephen, Tim and me in audience with the Pope, Rome 1986 (courtesy of Fotografia Felici)..

  18. Family party in 1986 with Jonathan – bottle in hand – and my Uncle Jack sitting between my parents and Don Page..

  19. Madrid, October 1987. From left to right (seated around the table): Pam Benson (nurse), Stephen, Pedro Gonzalez Diaz, Elaine Mason (nurse), Raymond LaFlamme (student), Tim, me, Carmen Sigüenza González.

  20. The Moulin at first sight.

  21. Companion of Honour, Buckingham Palace, July 1989.

  22. In the new house with the children and my parents, November 1994.

  23. At Wimpole Hall, 4th July 1997.

  24. Robert, Lucy, Tim and me, 4th July 1997.

  25. With Jonathan and Bill Loveless, 4th July 1997.

  26. Lucy and Robert at Lucy’s christening.

  27. Tim, aged two and a half.

  28. My brother Chris and his wife Penelope with their children, Calendula, Celeste, Peter and William.

  29. Tim, Lucy and me with Stephen after the presentation of the Copley Medal at the Royal Society, 30th November 2006.