Travelling to Infinity (68 page)

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 intervention 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