Vintage Sacks (4 page)

In the summer of 1970, then, in a letter to the
Journal of
the American Medical Association,
I reported these findings, describing the total effects of L-DOPA in sixty patients whom I had maintained on it for a year.
All
of these, I noted, had done well at first; but all of them, sooner or later, had escaped from control, had entered complex, sometimes bizarre, and unpredictable states. These could not, I indicated, be seen as “side effects,” but had to be seen as integral parts of an evolving whole. Ordinary considerations and policies, I stressed, sooner or later ceased to work. There was a need for a deeper, more radical understanding.

My
JAMA
letter caused a furor among some of my colleagues. I was astonished and shocked by the storm that blew up; and, in particular, by the tone of some of the letters. Some colleagues insisted that such effects “never” occurred; others that, even if they did, the matter should be kept quiet, lest it disturb “the atmosphere of therapeutic optimism needed for the maximal efficiency of L-DOPA.” It was even thought, absurdly, that I was “against” L-DOPA—but it was not L-DOPA but reductionism that I was against. I invited my colleagues to come to Mount Carmel, to see for themselves the reality of what I had reported; none of them took up my invitation. I had not properly realized, until this time, the power of
wish
to distort and deny—and its prevalence in this complex situation, where the enthusiasm of doctors, and the distress of patients, might lie in unconscious collusion, equally concerned to wish away an unpalatable truth. The situation had similarities to what had occurred twenty years before, when cortisone was clothed with unlimited promise; and one could only hope that with the passage of time, and the accumulation of undeniable experience, a sense of reality would triumph over wish.

Was my letter too condensed—or simply confusing? Did I need to put things in the form of extended articles? With much labor (because it went against the grain, so to speak), I put everything I could in an orthodox or conventional format—papers full of statistics and figures and tables and graphs—and submitted these to various medical and neurological journals. To my amazement and chagrin, none was accepted—some of them, indeed, elicited vehemently censorious, even violent, rejections, as if there were something intolerable in what I had written. This confirmed my feeling that a deep nerve had been struck, that I had somehow elicited not just a medical, but a sort of epistemological, anxiety—and rage.
⁵

I had not only cast doubt on what had appeared at first to be the extremely simple matter of giving a drug and being in control of its effects; I had cast doubt on predictability itself. I had (perhaps without fully realizing it myself ) hinted at something bizarre, a contradiction of ordinary ways of thinking, and of the ordinary, accepted picture of the world. A specter of extreme oddness, of radical contingency, had come up—and all this was disquieting, confounding, in the extreme (“These things are so bizarre that I cannot bear to contemplate them”—Poincaré).

And so, by mid-1970 I was brought to a halt, at least so far as any publication was concerned. The work continued, full of excitement, unabated, and I accumulated (I dared to think) an absolute treasure of observations and of hypotheses and reflections associated with them, but I had no idea what to do with them. I knew that I had been given the rarest of opportunities; I knew that I had something valuable to say; but I saw no way of saying it, of being faithful to my experiences, without forfeiting medical “publish-ability” or acceptance among my colleagues. This was a time of great bewilderment and frustration, considerable anger, and sometimes despair.

This impasse was broken in September of 1972, when the editor of
The Listener
invited me to write an article on my experiences. This was going to be my opportunity. Instead of the censorious rejections I was used to, I was actually being invited to write, being offered a chance to publish, fully and freely, what had been accumulating and building up, dammed up, for so long. I wrote “The Great Awakening” at a single sitting—neither I nor the editor altered a single word—and it was published the following month. Here, with a sense of great liberation from the constraints of “medicalizing” and medical jargon, I described the wonderful panorama of phenomena I had seen in my patients. I described the raptures of their “awakenings,” I described the torments that so often followed; but above all, it was
phenomena
which I was concerned to describe, with a neutral and phenomenological (rather than a therapeutic, or “medical”) eye.

But the picture, the theory, implied by the phenomena: this seemed to me to be of a revolutionary sort—“a new neurophysiology,” as I wrote, “of a quantum-relativistic sort.” These were bold words indeed; they excited me, and others—although I soon came to think that I had said too much, and too little. That there was
something,
assuredly, very strange going on—not quantality, not relativity, but something much commoner, yet stranger. I could not imagine what this was, in 1972, though it haunted me when I came to complete
Awakenings,
and rippled through it constantly, evasively, as half-tantalizing metaphors.

The article in
The Listener
was followed (in contrast to the hateful
JAMA
experience of two years earlier) by a wave of interest, and a great number of letters, an exciting correspondence which lasted several weeks. This response put an end to my long years of frustration and obstruction and gave me a decisive encouragement and affirmation. I picked up my long discarded case-histories of 1969, added eleven more, and in two weeks completed
Awakenings.
The case-histories were the easiest to write; they wrote themselves, they stemmed straight from experience, and I have always regarded them with especial affection as the true and unassailable center of
Awakenings.
The rest is disputable, the stories are so.

But the 1973 publication of
Awakenings,
while attracting much general attention, met the same cold reception from the profession as my articles had done earlier. There was not a single medical notice or review, only a disapproving or uncomprehending silence. There was one brave editor (of the British Clinical Journal) who spoke out on this, making
Awakenings
his “editor's choice” for 1973, but commenting on “the strange mutism” of the profession toward it.

I was devastated at this medical “mutism,” but at the same time reassured and encouraged by the reaction of A. R. Luria. Luria himself, after a lifetime of minute neuro-psychological observations, had himself published two extraordinary, almost novelistic case histories—
The Mind of a
Mnemonist
(in 1968) and
The Man with a Shattered World
(1972). To my intense pleasure, in the strange medical silence which attended the publication of
Awakenings,
I received a letter, two letters, from him; in the first, he spoke of his own “biographic” books and approaches:

Frankly said, I myself like very much the type of “biographical” study, such as Sherashevsky [the Mnemonist] and Zazetski [the man with the “shattered world”] . . . firstly because it is a kind of “Romantic Science” which I wanted to introduce, partly because I am strongly
against
a formal statistical approach and
for
a qualitative study of personality,
for
every attempt to find
factors
underlying the structure of personality. [Letter of July 19, 1973, emphasis in original]

And in the second, he spoke of
Awakenings:

I received
Awakenings
and have read it at once with great delight. I was ever conscious and sure that a good clinical description of cases plays a leading role in medicine, especially in Neurology and Psychiatry. Unfortunately, the ability to describe which was so common to the great Neurologists and Psychiatrists of the 19th century [is] lost now, perhaps because of the basic mistake that mechanical and electrical devices can replace the study of personality. . . . Your excellent book shows, that the important tradition of clinical case studies can be revived and with a great success. [Letter of July 25, 1973]

He then went on to ask me some specific questions, above all expressing his fascination that L-DOPA should be so various and unstable in effect.
⁶

I had admired Luria infinitely since my medical school days, and before. When I heard him lecture in London in 1959, I was overwhelmed by his combination of intellectual power and human warmth—I had often encountered these separately, but I had not too often encountered them
together
—and it was exactly this combination which so pleased me in his work, and which made it such an antidote to certain trends in medical writing, which attempted to delete both subjectivity and reflection. Luria's early works had been, sometimes, a little stilted in character, but they grew in intellectual warmth, in wholeness, as he grew older, culminating in his two late works,
The Mind of a
Mnemonist
and
The Man with a Shattered World.
I do not know how much either of these works influenced me, but they certainly emboldened me, and made it easier to write and publish
Awakenings.

Luria often said that he had to write two sorts of books, wholly different but wholly complementary: “classical,” analytic texts (like
Higher Cortical Functions in Man
) and “romantic,” biographical books (like
The Mind of a Mnemonist
and The Man with a Shattered World). I was also conscious of this double need, and found there were always
two
books, potentially, demanded by every clinical experience: one more purely “medical” or “classical”—an objective description of disorders, mechanisms, syndromes; the other more existential and personal—an emphatic entering into patients' experiences and worlds. Two such books dawned in me when I first saw our post-encephalitic patients:
Compulsionand Constraint
(a study of subcortical disorders and mechanisms) and
People of the Abyss
(a novelish, Jack Londonish book). They only came together, finally, in 1969—in a book which tried to be
both
classical and romantic; to place itself at the intersection of biology and biography; to combine, as best it could, the modes of paradigm and art.

But
no
model, finally, seemed to suit my requirements—for what I was seeing, and what I needed to convey, was neither purely classical nor purely romantic, but seemed to move into the profound realm of allegory or myth. Even my title,
Awakenings,
had a double meaning, partly literal, partly in the mode of metaphor or myth.

The elaborate case history, the “romantic” style, with its endeavor to present a whole life, the repercussions of a disease, in all its richness, had fallen very much out of favor by the middle of the century—and this, perhaps, was one reason for the “strange mutism” of the profession when
Awakenings
was first published in 1973. But as the seventies progressed, this antipathy to case-history diminished—it even became possible (though difficult) to publish case histories in the medical literature. With this thawing of atmosphere, there was a renewed sense that complex neural and psychic functions (and their disorders)
required
detailed and nonreductive narratives for their explication and understanding.
⁷

At the same time, the unpredictable responses to L-DOPA I saw with my patients in 1969—their sudden fluctuations and oscillations, their extraordinary “sensitization” to L-DOPA, to everything—were now being seen, increasingly, by everyone. Post-encephalitic patients, it became clear, might show these bizarre reactions within weeks, sometimes days—whereas “ordinary” Parkinsonian patients, with their more stable nervous systems, might not show them for several years. Yet, sooner or later,
all
patients maintained on L-DOPA started to show these strange, unstable states—and with the FDA approval of L-DOPA in 1970, their numbers mounted, finally to millions. And now, everybody found the same: the central promise of L-DOPA was confirmed, a million-fold—but so too was the central threat, the certainty of “side effects” or “tribulations,” sooner or later.

Thus what had been surprising or intolerable when I first published
Awakenings
was—by the time the third edition was published in 1982—confirmed for all my colleagues by their own, undeniable experience. The optimistic and irrational mood of the early days of L-DOPA had changed to something more sober and realistic. This mood, well established by 1982, made the new edition of
Awakenings
acceptable, and even a classic, to my medical colleagues, where the original had been unacceptable nine years before.

It is the imagination of other people's worlds—worlds almost inconceivably strange, yet inhabited by people just like ourselves, people, indeed, who might
be
ourselves—that forms the center of
Awakenings.
Other worlds, other lives, even though so different from our own, have the power of arousing the sympathetic imagination, of awakening an intense and often creative resonance in others. We may never have seen a Rose R., but once we have read of her we see the world differently—we can imagine her world, with a sort of awe, and with this our world is suddenly enlarged. A wonderful example of such a creative response was given by Harold Pinter in his play,
A Kind of
Alaska;
this is Pinter's world, the landscape of his unique gifts and sensibility, but it is also Rose R.'s world, and the world of
Awakenings.
Pinter's play has been followed by several adaptations of
Awakenings
for stage and screen; each of these has drawn on different aspects of the book. Every reader will bring to
Awakenings
his own imagination and sensibilities, and will find, if he lets himself, his world strangely deepened, imbued with a new depth of tenderness and perhaps horror. For these patients, while seemingly so extraordinary, so “special,” have in them something of the universal, and can call to everyone, awaken everyone, as they called to and awakened me.