Keeping control

Jane Rogers

  • Ivan: Living with Parkinson’s Disease by Ivan Vaughan and Jonathan Miller
    Macmillan, 203 pp, £9.95, November 1986, ISBN 0 333 42454 9

This is not a moving account of how bravely and cleverly Ivan Vaughan copes with a debilitating disease: its scope is far wider, and its tone more varied, and more demanding of the reader, than that would suggest. Part of it is an adventure story about someone in extraordinary physical circumstances, for whom execution of the most mundane acts (such as putting on spectacles, opening a letter) attains a level of cliff-hanging suspense. Part of it is a mass of theories about the nature of the disease, the functioning of the brain and nervous system, stress and ways of dealing with it, drugs and attitudes to their use. The theories, in which the author clearly delights, all spring from specific physical experiences, and so living with Parkinson’s disease, in Ivan Vaughan’s book, becomes a fascinating, even thrilling experience.

Jonathan Miller talks in his introduction of Ivan ‘surmounting his disease by regarding it as a treasured possession and not just as an abominable affliction’, and that is exactly right. The experience of the disease becomes a voyage of discovery – about the disease and its treatment – and of self-discovery. The mood not only never touches on self-pity, but makes one embarrassed for having entertained such a thought. Ivan Vaughan is as excited by his experiences, and his reactions to them, as a dog let loose in a field of rabbits. The book chronicles eight years in Vaughan’s life, from the diagnosis of the disease, through his decisions to keep it a secret and to reject the orthodox drugs, to its obvious worsening and his use of drugs to inhibit the symptoms at times of his own choosing. There is no known cure for Parkinson’s (an affliction of that part of the brain known as the substantia nigra, which causes trembling and rigidity in the patient), but the drug L-dopa can inhibit the symptoms, and is commonly prescribed to sufferers. L-dopa causes various side-effects, including uncontrollable writhing movements and, according to Vaughan, a slight sense of depressed inhibition.

He rejected the idea of using drugs continuously to mask the symptoms of Parkinson’s disease, and his arguments clearly make sense for himself, though not necessarily for all sufferers from the disease. When he has been off drugs for a while his physical state degenerates to complete helplessness: he has to be fed, dressed, held up, and is barely able to articulate words or make himself heard. His mental condition is not affected: he is able to think and reason as clearly as ever. On the drugs, he is able to lead an active life, looking after himself physically, travelling, lecturing. His reasons for not taking drugs continuously are partly to do with the side-effects, but mainly because he wants to keep control. He repeats that his mental state is happier – more creative, more fertile – when off drugs, even though he may have lost all control physically. Apart from the ability to think more creatively, the very sense of being solely dependent on his own wit and resources to score victories over the disease which is affecting his muscles is a source of pride and satisfaction, a game of skill which he can sometimes win.

The desire to retain control rather than rely on drugs is utterly understandable, and fairly widely felt amongst the rest of us who don’t have such a debilitating disease to deal with. Combating pain without recourse to drugs, for example, can give not only a sense of achievement but also a new view of pain as a positive process: women in childbirth making a virtue of rejecting painkillers is the most obvious example. So Vaughan’s assertions that he feels he is, however disabled, more honestly himself when not on drugs rings true. He suggests that the brain can store drugs for later use, to be called on at will by the subject: ‘I can choose whether to dip into stored resources or not, to harbour and spin out muscular control or blow it in a spurt of action.’

He feels a natural surge of energy and fluency in the mornings just before dawn, and the chapters which stand out most vividly are those describing his early-morning run to Grantchester. The process of getting up and dressed is fraught with difficulty. After waking he wonders what time it is.

I nudged my arm over the side of the bed and let it drop down to the floor. It remained free of tremor. My fingers picked their way across the carpet to where the clock should have been. My arm was fully outstretched but I’d missed the clock.

– Why isn’t it there?

I tried not to get stuck in the usual bog of speculation and recrimination. Trembling with the arousal that followed any irritation or frustration, my fingers began to retrace their steps.

He knows when he is likely to be struck by either intense trembling, or rigidity, and has developed strategies for avoiding it, of which the most powerful is the repetition of a mantra to relax his conscious mind and distract it from the physical difficulty. When he is no longer excited or disturbed about a physical action, he is more likely to be able to achieve it. After a series of adventures and near-catastrophes he gets out into the morning air, and his joy and exuberance are vividly described.

I began to hit patches of sunlight along the route. Without stopping, I risked a glance behind to see a vast area of blue sky with hardly any clouds. No one around. I slowed down and ran with my arms windmilling in a backwards butterfly stroke.

This is combined with a stream of fascinated speculation and internal debate about the disease and its effects. After being distracted by the scenery and stumbling over a grid: ‘The controlled falling by which I managed to run was now out of control: my legs stamped forwards at a faster and faster rate; my heart banged into panic gear.’ Here the writing shifts fluently from a personal to a more objective account – ‘The self-fulfilling spiral was triggered. Awareness of probable danger heightens arousal, making it more difficult to cope because resources are wasted in worry’ – and then clicks back into an internal debate:

— You’ve had it now. You’re in for a heart attack.

— It’s true my legs are giving way.

— It’s miles back home.

— Shurrup.

— I’m beginning to sweat.

His ability to shift, between one sentence and the next, from the highly charged and personal to an analytical voice, makes the account intensely readable and involving. There is the constant sense of an agile mind ranging over and seeking to interpret its experiences.

It is only occasionally, when an external view of the writer is presented, that you realise with shock just how physically disabled he is at times. He includes a description of his daughter feeding him: ‘The first mouthful came too quickly, hit my closed lips and was immediately withdrawn half-way, a spoonful of cottage pie hovering above the void between plate and mouth. I was stuck, speechless, producing minute popping noises instead of words to try to attract Sophie’s eye and get her to move the spoon over the plate.’ For most of the time the reader is so caught up in the theories spun by Vaughan out of every physical event that there is no real sense of the activities as those of a handicapped person. The brief chapter entitled ‘On the Loo’ has Ivan stuck on the loo. Mental activity races ahead:

The temptation to speculate was too strong. After all, didn’t creative thought involve making insightful connections between apparently disparate ideas? — Yes, but there are differences. You’re stuck here unable to call upon resources, and creative ideas present themselves of their own accord. No: it may seem like that but often a huge effort has gone into considering a paradox or contradiction subconsciously. While I happen to be in a calm state doing something trivial, the induction process has been quietly mustering the means for coming up with an answer.

Vaughan’s family remain shadowy in this narrative: he speaks of his wife Jan being placed in the contradictory role of leaving him as independent as possible, and yet being expected not to mind the difficulties and responsibilities his drug-free helplessness can force upon her. From these demands we learn more of Ivan himself than of his wife. The chapter on their holiday in Venice gives the clearest insight into how very difficult Jan’s role must often be, when Ivan is left helpless because his drugs haven’t ‘taken’ in time.

Ivan Vaughan’s thoughts, speculations and research into Parkinson’s have had the effect of introducing him to a public sphere – the Jonathan Miller film, this book – which he was not part of before the onset of the disease. The book carries a recommendation by Paul McCartney (‘We grew up together and were good mates at school’) and early on, talking about his own desire for independent self-determination, Vaughan says, ‘Childhood friends had moved on; they had become famous and I had been forced to cut my emotional ties with them. New friendships did not run as deep.’ Seeking in these early chapters to offer some explanation for his idiosyncratic response to the disease, Vaughan paints himself both as a loner and as an almost deliberate under-achiever. He both wanted and didn’t want the kind of public success that had come so easily to his friends. As the book progresses and, through his writing and talking about Parkinson’s, he himself goes public, and there is a sense of relaxation and of personal achievement – a pleasure in the knowledge that he is being recognised and taken seriously by doctors, journals, film-makers, publishers. ‘I seem to have spent my life trying to be subtly successful, but not too successful because I might lose sight of the personality and attributes I like.’ It is a pleasure not only to listen to a lone voice making itself heard against the monolithic humming of medical and scientific orthodoxy, but also to see Ivan Vaughan reaching a sense of self-fulfilment and achievement by reflecting on his life and his disease.