Foreword to Ivan

May 1986⁸⁸

In 1984, BBC2’s science strand Horizon transmitted Miller’s film profile of Ivan Vaughan, an acute sufferer of Parkinson’s disease. The documentary provoked a powerful response from the viewing public. Here, by way of an introduction to Vaughan’s own memoir, Miller reflected on their time together.

In 1817 the English physician James Parkinson described a disease of the nervous system in which the patient was progressively afflicted by a stooped, shuffling rigidity accompanied by a coarse, disabling tremor of the limbs. Although Parkinson referred to this condition as a ‘shaking palsy,’ it is not really a paralysis in the obvious sense of the term, because although the patient’s movements are slowed, sometimes to the point of statuesque immobility, it is possible to overcome the rigidity and under the right circumstances the patient may surprise onlookers by moving with unexpected speed and fluency.⁸⁹

Viewers of the BBC documentary on Ivan Vaughan found it hard to reconcile the apparently normal running sequence at the start of the film with the strenuously awkward ritual of dressing in the morning. In order to make this transition, Ivan had to tumble off the front steps of the house and it was only by taking advantage of this self-inflicted emergency that he was then able to jog for several miles. And even then a trivial interruption, such as an unexpected encounter with a dog or a friend, could easily bring him to a standstill, at which point the trembling rigidity reclaimed him once again. The disorder displays many paradoxes of this sort. And as one clinician wrote in 1895, ‘Parkinson’s disease remains so utterly inexplicable…that we are constantly drawn to it by the lure of the mysterious.’⁹⁰

The last 80 years have seen remarkable progress in neurological research, and Parkinson’s disease is not quite as inexplicable as it once seemed. For instance, although there is still some dispute over whether the various examples represent one disease or several, the fact that so many of them are associated with degenerative changes in the same part of the brain – in the so-called substantia nigra – has convinced most neurologists that Parkinson’s disease is, after all, a pathological entity.

Even so, the precise cause of the condition is still obscure and, although an important advance was made when it was discovered that the affected region of the brain is conspicuously deficient in the neurotransmitter dopamine and that startling remissions could often be brought about by administering L-dopa – a metabolic precursor of dopamine – the treatment remains to all intents and purposes symptomatic and the improvement is not necessarily maintained when the drug is administered over a long period of time. Besides, it is notoriously difficult to stabilize the dose and, unless the progress is frequently monitored, the patient can easily exchange one set of disabling symptoms for another. The limbs may now be affected by slow twisting movements and, although these can usually be corrected by reducing the dose, some patients claim that even when it is working favourably the drug tends to induce a disturbing sense of coercion. So while Ivan Vaughan would be the last to deny the blessing of L-dopa, he would be the first to insist that the blessing is a mixed one, and that there is an enigmatic sense in which he is more ‘himself’ when he is off the drug than when he is relieved of symptoms and on it.

For that reason, and also perhaps because he is an unusually curious patient who regards his condition as something to be explored as well as endured, Ivan juggles with his own treatment and, in the knowledge that he can always run to the drug for shelter, he sometimes takes pharmacological holidays so that he can experiment with the transitions from one state to the next.

As far as the medical profession is concerned this sort of therapeutic improvisation is short-sighted and irresponsible, and any adjustments are best left to those who are in the know. But for an intelligently introspective patient such as Ivan Vaughan, having the disease is just another way of being in the know – and since the paradoxical experiences of the disease are quite literally unknowable to anyone except the sufferer, Ivan feels that he has valuable contributions to make and that the experiments are not simply frivolous self-indulgences.

The problem is that, although doctors pay lip service to the principle that all patients should be listened to, the intelligent sufferer often comes away from the clinic with the distinct impression that he or she has been seen without actually being heard. And since many of the vicissitudes of the disease cannot be observed and have to be described, the patient’s spoken testimony is one of the most valuable sources of information.

Unfortunately it is only too easy for the busy clinician to confuse a garrulous patient with one who is helpfully eloquent, and when it comes to someone like Ivan Vaughan – who sees himself as a partner in the research as opposed to being a submissive patient – professional hackles are raised and there is an understandable, but not altogether forgivable tendency to close ranks and disparage such contributions as the ramblings of an eccentric amateur.

In that respect Ivan is undoubtedly an awkward customer, and it is not difficult to sympathize with the suspicion that he arouses – not only amongst neurologists, but also amongst the members of the Parkinson’s Disease Society, who prefer to maintain a cooperative relationship with the profession and feel that Ivan Vaughan’s individualistic experiments rock the boat unhelpfully. All the same, as medicine becomes more scientific, its official literature leaves less and less room for the subjective accounts provided by the patient, and as the discourse becomes denser and more impenetrable, it becomes harder and harder to hear the voices of those for whom the benefits are designed. It is only by dint of his heretical awkwardness that Ivan Vaughan has succeeded in making at least one of those voices audible, and although both doctors and other Parkinsonian sufferers have argued and will continue to argue that Ivan’s case is atypical and that his film appearance was both misleading and alarming, I feel now, as I felt when I reluctantly accepted his original invitation to visit him, that Ivan has a certain wisdom to impart and that anyone who is interested in this perplexing disorder has something to learn from him.

I can still remember my own irritation on hearing the thin, importunate voice at the other end of the telephone when Ivan rang me out of the blue with the request that I should come up to Cambridge and hear what he, a sufferer from Parkinson’s disease, had to say about it. What, I thought, made him so special? Why did he rather than anyone else deserve a visit? To my shame, I tried to put him off, pleading business, not to mention a lack of requisite qualifications. But fortunately he refused to take no for an answer, insisting that I could surely spare an hour or two and that it was precisely because I was not a member of the neurological establishment that I might perhaps hear details that had gone unheeded by the better qualified.

It became apparent immediately on my arrival in Cambridge that my irritable misgivings were ill-founded. Ivan and I spoke for many hours and I soon became aware of the fact that, in some altogether mysterious way, he had succeeded in surmounting his disease by regarding it as a treasured possession and not just as an abominable affliction. As far as he was concerned, Parkinson’s disease was simply another mode of existence filled with intriguing paradoxes, the introspective study of which might perhaps lead to a better understanding of the nature of normal will and action. After discussing the possibility of collaborating on a book, it was finally agreed that the subject might be broached more successfully in the medium of film – and from the awed fascination shown by the crew, I was convinced that my own interest was not peculiar and that what Ivan had to say and show would intrigue and enlighten the ordinary viewer.91

The book in which Ivan now develops these themes will probably arouse just as many objections as the film did. His description of what it is like to suffer Parkinson’s disease is unarguably idiosyncratic and no doubt fellow sufferers will claim that their experience does not square with his. And neurologists will probably take exception to Ivan’s unremittingly combative attitude to the treatment that is now on offer. All the same, this controversial narrative provides an indispensable supplement to the ‘official’ history of Parkinson’s disease. As Carlo Ginzburg says in the introduction to The Cheese and the Worms (1976), historians who might once have been ‘accused of wanting to know only about “the great deeds of kings” [are now] turning toward what their predecessors passed over in silence, discarded, or simply ignored’ – namely, the personal experience of anonymous people whose lives are often omitted from official descriptions of a particular period.⁹² Apart from the fact that Ivan’s account has an undeniable value for its intelligence and for its inquisitive curiosity, and because extended subjective descriptions of this disease are so rare, its heretical tone of voice is just one of the things that future historians will find intriguing.

The amateur theologian rediscovered by Ginzburg represents the voice of an ordinary person who finds himself in conflict with the official dogmas of the Catholic Church and is prepared to risk and lose his life in the effort to reconcile his own beliefs with the teachings of the Vatican. By retrieving this story Ginzburg has amplified and enriched our picture of moral and intellectual life at the end of the sixteenth century. I’m convinced that the future will recognize Ivan’s contribution in the same light and that his argumentative heresies, which could so easily have been passed over in silence, will eventually be seen as a valuable document in the history of medicine.