Vintage Sacks (3 page)

It was really only later, when I thought about it, that I became astonished at the nonchalant way in which Griffin (and my other books) proposed the use of intensely poisonous substances. I had not the least difficulty getting potassium cyanide from the chemist's, the pharmacy, down the road—it was normally used for collecting insects in a killing bottle—but I could rather easily have killed myself with the stuff. I gathered, over a couple of years, a variety of chemicals that could have poisoned or blown up the entire street, but I was careful—or lucky.
³

If my nose was stimulated in the lab by certain smells—the pungent, irritating smell of ammonia or sulfur dioxide, the odious smell of hydrogen sulfide—it was much more pleasantly stimulated by the garden outdoors and the kitchen, with its food smells, and its essences and spices, inside. What gave coffee its aroma? What were the essential substances in cloves, apples, roses? What gave onions and garlic and radishes their pungent smell? What, for that matter, gave rubber its peculiar odor? I especially liked the smell of hot rubber, which seemed to me to have a slightly human smell (both rubber and people, I learned later, contain odoriferous isoprene). Why did butter and milk acquire sour smells if they “went off,” as they tended to do in hot weather? What gave “turps,” oil of turpentine, its lovely, piney smell? Besides all these “natural” smells, there were the smells of the alcohol and acetone that my father used in the surgery, and of the chloroform and ether in my mother's obstetric bag. There was the gentle, pleasant, medical smell of iodoform, used to disinfect cuts, and the harsh smell of carbolic acid, used to disinfect lavatories (it carried a skull and crossbones on its label).

Scents could be distilled, it seemed, from all parts of a plant—leaves, petals, roots, bark. I tried to extract some fragrances by steam distillation, gathering rose petals and magnolia blossoms and grass cuttings from the garden and boiling them with water. Their essential oils would be volatilized in the steam and settle on top of the distillate as it cooled (the heavy, brownish essential oil of onions or garlic, though, would sink to the bottom). Alternatively one could use fat—butter fat, chicken fat—to make a fatty extract, a pomatum; or use solvents like acetone or ether. On the whole my extractions were not too successful, but I succeeded in making some reasonable lavender water, and extracting clove oil and cinnamon oil with acetone. The most productive extractions came from my visits to Hampstead Heath, when I gathered large bags of pine needles and made a fine, bracing green oil full of terpenes—the smell reminded me a little of the Friar's Balsam that I would be set to inhale, in steam, whenever I had a cold.

I loved the smell of fruits and vegetables and would savor everything, sniff at it, before I ate. We had a pear tree in the garden, and my mother would make a thick pear nectar from its fruit, in which the smell of pears seemed heightened. But the scent of pears, I had read, could be made artificially, too (as was done with “pear drops”), without using any pears. One had only to start with one of the alcohols—ethyl, methyl, amyl, whatever—and distill it with acetic acid to form the corresponding ester. I was amazed that something as simple as ethyl acetate could be responsible for the complex, delicious smell of pears, and that tiny chemical changes could transform this to other fruity scents—change the ethyl to isoamyl, and one had the smell of ripening apples; other small modifications would give esters that smelled of bananas or apricots or pineapples or grapes. This was my first experience of the power of chemical synthesis.

There were, besides the pleasant fruity smells, a number of vile, animally smells that one could easily make from simple ingredients or extract from plants. Auntie Len, with her botanical knowledge, sometimes colluded with me here, and introduced me to a plant called stinking goose-foot, a species of
Chenopodium.
If this was distilled in an alkaline medium—I used soda—a particularly vile-smelling and volatile material came off, which stank of rotten crabs or fish. The volatile substance, trimethylamine, was surprisingly simple—I had thought the smell of rotting fish would have a more complex basis. In America, Len told me, they had a plant called skunk cabbage, and this contained compounds that smelled like corpses or putrefying flesh; I asked if she could get me some, but, perhaps fortunately, she could not.

Some of these stinks incited me to pranks. We would get fresh fish every Friday, carp and pike, which my mother would grind to make the gefilte fish for shabbas. One Friday I added a little trimethylamine to the fish, and when my mother smelled this, she grimaced and threw the lot away.

My interest in smells made me wonder how we recognized and categorized odors, how the nose could instantly delineate esters from aldehydes, or recognize a category such as terpenes, as it were, at a glance. Poor as our sense of smell was compared to a dog's—our dog, Greta, could detect her favorite foods if a tin was opened at the other end of the house—there nevertheless seemed in humans to be a chemical analyzer at work at least as sophisticated as the eye or the ear. There did not seem to be any simple order, like the scale of musical tones, or the colors of the spectrum; yet the nose was quite remarkable in making categorizations that corresponded, in some way, to the basic structure of the chemical molecules. All the halogens, while different, had halogenlike smells. Chloroform smelled exactly like bromoform and (while not identical) had the same sort of smell as carbon tetrachloride (sold as the dry-cleaning fluid Thawpit). Most esters were fruity; alcohols—the simplest ones, anyway—had similar “alcoholic” smells; and aldehydes and ketones, too, had their own characteristic smells.

(Errors, surprises, could certainly occur, and Uncle Dave told me how phosgene, carbonyl chloride, the terrible poison gas used in the First World War, instead of signaling its danger by a halogenlike smell, had a deceptive scent like new-mown hay. This sweet, rustic smell, redolent of the hayfields of their boyhood, was the last sensation phosgene-gassed soldiers had just before they died.)

The bad smells, the stenches, always seemed to come from compounds containing sulfur (the smells of garlic and onion were simple organic sulfides, as closely related chemically as they were botanically), and these reached their climax in the sulfuretted alcohols, the mercaptans. The smell of skunks was due to butyl mercaptan, I read—this was pleasant, refreshing, when very dilute, but appalling, overwhelming, at close quarters. (I was delighted, when I read
Antic Hay
a few years later, to find that Aldous Huxley had named one of his less delectable characters Mercaptan.)

Thinking of all the malodorous sulfur compounds and the atrocious smell of selenium and tellurium compounds, I decided that these three elements formed an olfactory as well as a chemical category, and thought of them thereafter as the “stinkogens.”

I had smelled a bit of hydrogen sulfide in Uncle Dave's lab—it smelled of rotten eggs and farts and (I was told) volcanoes. A simple way of making it was to pour dilute hydrochloric acid on ferrous sulfide. (The ferrous sulfide, a great chunky mass of it, I made myself by heating iron and sulfur together till they glowed and combined.) The ferrous sulfide bubbled when I poured hydrochloric acid on it, and instantly emitted a huge quantity of stinking, choking hydrogen sulfide. I threw open the doors into the garden and staggered out, feeling very queer and ill, remembering how poisonous the gas was. Meanwhile, the infernal sulfide (I had made a lot of it) was still giving off clouds of toxic gas, and this soon permeated the house. My parents were, by and large, amazingly tolerant of my experiments, but they insisted, at this point, on having a fume cupboard installed and on my using, for such experiments, less generous quantities of reagents.

When the air had cleared, morally and physically, and the fume cupboard had been installed, I decided to make other gases, simple compounds of hydrogen with other elements besides sulfur. Knowing that selenium and tellurium were closely akin to sulfur, in the same chemical group, I employed the same basic formula: compounding the selenium or tellurium with iron, and then treating the ferrous selenide or ferrous telluride with acid. If the smell of hydrogen sulfide was bad, that of hydrogen selenide was a hundred times worse—an indescribably horrible, disgusting smell that caused me to choke and tear, and made me think of putrefying radishes or cabbage (I had a fierce hatred of cabbage and brussels sprouts at this time, for boiled, overboiled, they had been staples at Braefield).

Hydrogen selenide, I decided, was perhaps the worst smell in the world. But hydrogen telluride came close, was also a smell from hell. An up-to-date hell, I decided, would have not just rivers of fiery brimstone, but lakes of boiling selenium and tellurium, too.

Foreword to AWAKENINGS (1990 Edition)

Twenty-four years ago I entered the wards of Mount Carmel and met the remarkable post-encephalitic patients who had been immured there since the great
encephalitis
lethargica
(sleeping sickness) epidemic just after the First World War. Von Economo, who first described the
encephalitislethargica
half a century before, had spoken of the most affected patients as “extinct volcanoes.” In the spring of 1969, in a way which he could not have imagined, which no one could have imagined or foreseen, these “extinct volcanoes” erupted into life. The placid atmosphere of Mount Carmel was transformed—occurring before us was a cataclysm of almost geological proportions, the explosive “awakening,” the “quickening,” of eighty or more patients who had long been regarded, and regarded themselves, as effectively dead. I cannot think back on this time without profound emotion—it was the most significant and extraordinary in my life, no less than in the lives of our patients. All of us at Mount Carmel were caught up with the emotion, the excitement, and with something akin to enchantment, even awe.

It was not a purely “medical” excitement, any more than these awakenings were a purely medical event. There was a tremendous
human
(even allegorical) excitement at seeing the “dead” awaken again—it was at this point that I conceived the title
Awakenings,
taken from Ibsen's
When
We Dead Awaken
—at seeing lives which one had thought irremediably blighted suddenly bloom into a wonderful renewal, at seeing individuals in all their vitality and richness emerge from the almost cadaveric state where they had been frozen and hidden for decades. We had had inklings of the vivid personalities so long immured—but the full reality of these only emerged, indeed burst upon us, with our patients' awakenings.

I was exceedingly lucky to encounter such patients at such a time, in such working conditions. But they were not the only post-encephalitic patients in the world—there were, in the late '60s, still many thousands, some in large groups, in institutions all over the world. There was no major country
without
its complement of post-encephalitics. And yet
Awakenings
is the only existing account of such patients—their decades-long “sleep” and, then, their dramatic “awakening” in 1969.

I found this exceedingly peculiar at the time: why, I thought, were there not other accounts of what must be happening all over the world? Why, for example, was there not an
Awakenings
from Philadelphia, where I knew of a group of patients not so dissimilar to my own? Why not from London, where the Highlands Hospital housed the largest post-encephalitic colony in England?
⁴
Or from Paris or Vienna, where the disease first struck?

There is no single answer to this; there were many things that mitigated against the sort of description, the “biographic” approach, of
Awakenings.

One factor that made
Awakenings
possible had to do with the nature of the
situation.
Mount Carmel is a chronic hospital, an asylum; and physicians in general avoid such hospitals, or visit them briefly, and leave as soon as they can. This was not always the case: in the last century, Charcot virtually lived in the Salpêtrière, and Hughlings-Jackson at the West Riding Asylum—the founders of neurology realized well that it was only in such hospitals that the depths and details of the profounder disorders could be explored and worked out. As a resident I myself had never been to a chronic hospital, and though I had seen a number of patients with post-encephalitic Parkinsonism and other problems in outpatient clinics, I had no idea how profound and strange the effects of post-encephalitic disease might be. I found coming to Mount Carmel, in 1966, a revelation. It was my first encounter with disease of a depth I had never seen, read of, or heard of, before. The medical literature on the sleeping sickness had virtually come to a stop in 1935, so that the profounder forms of it, occurring later, had never been described. I would not have imagined it
possible
for such patients to exist; or, if they existed, to remain undescribed. For physicians do not go, and reports do not emerge, from the “lower reaches,” these abysses of affliction, which are now (so to speak) beneath the notice of Medicine. Few doctors ever entered the halls and back wards of chronic hospitals and asylums, and few had the patience to listen and look, to penetrate the physiologies and predicaments of these increasingly inaccessible patients.

The “other” side, the good side, of chronic hospitals is that what staff they have may work and live in them for decades, may become extraordinarily close to their charges, the patients, get to know and love them, recognize, respect them,
as people.
So when I came to Mount Carmel I did not just encounter “eighty cases of post-encephalitic disease,” but eighty individuals, whose inner lives and total being was (to a considerable extent) known to the staff, known in the vivid, concrete knowing of relationship, not the pallid, abstract knowing of medical knowledge. Coming to this community—a community of patients, but also of patients and staff—I found myself encountering the patients as individuals, whom I could less and less reduce to statistics or lists of symptoms.

And, of course, this was a unique
time
for the patients, and for all of us. It had been established in the late 1950s that the Parkinsonian brain was lacking in the transmitter dopamine, and that it might therefore be “normalized” if the level of dopamine could be raised. But attempts to do this, by giving L-DOPA (a precursor of dopamine) in milligram quantities, had failed persistently—until Dr. George Cotzias, with great audacity, gave a group of patients L-DOPA in doses of a thousand times greater than had ever been used. With the publication of Cotzias's results in February 1967, the outlook for Parkinsonian patients was changed at a stroke: a sudden, unbelievable hope appeared—that patients hitherto able to look forward only to miserable and increasing disability might be (if not cured) transformed by the new drug. Life opened out once again, in imagination, for all our patients. For the first time in forty years they could believe in a future. The atmosphere from this time on was electric with excitement. One of the patients, Leonard L., when he heard of L-DOPA, rapped on his letterboard with mixed enthusiasm and irony, “Dopamine is Resurrectamine. Cotzias is the Chemical Messiah.”

Yet it was not L-DOPA, or what it offered, which was so exciting for me when I first came as a young doctor, a year out of residency, to Mount Carmel. What excited me then was the spectacle of a disease that was never the same in two patients, a disease that could take any possible form—one rightly called a “phantasmagoria” by those who first studied it. (“There is nothing in the literature of medicine,” wrote McKenzie in 1927, “to compare with the phantasmagoria of disorder manifested in the course of this strange malady.”) At this level of the fantastic, the phantasmagoric, the encephalitis was enthralling. Much more fundamentally, it was, by virtue of the enormous range of disturbances occurring at every level of the nervous system, a disorder that could show, far better than any other, how the nervous system was organized, how brain and behavior, at their more primitive levels, worked. The biologist, the naturalist, in me was enthralled by all this—and led me to start gathering data at this time for a book on primitive, subcortical behaviors and controls.

But then, over and above the disorder, and its direct effects, were all the responses of the patients to their sickness—so what confronted one, what one studied, was not just disease or physiology, but
people,
struggling to adapt and survive. This too was clearly realized by the early observers, above all Ivy McKenzie: “The physician is concerned (unlike the naturalist) . . . with a single organism, the human subject, striving to preserve its identity in adverse circumstances.” In perceiving this, I became something more than a naturalist (without, however, ceasing to be one). There evolved a new concern, a new bond: that of commitment to the patients, the individuals under my care. Through them I would explore what it was like to be human, to
stay
human, in the face of unimaginable adversities and threats. Thus, while continually monitoring their organic nature—their complex, ever-changing pathophysiologies and biologies—my central study and concern became
identity
—their struggle to maintain identity—to observe this, to assist this, and, finally, to describe this. All this was at the junction of biology and biography.

This sense of the dynamics of illness and life, of the organism or subject striving to survive, sometimes under the strangest and darkest circumstances, was not a viewpoint which had been emphasized when I was a student or resident, nor was it one I found in the current medical literature. But when I saw these post-encephalitic patients, it was clearly and overwhelmingly true—indeed, it was the only way in which I
could
view them. Thus what had been dismissed disparagingly by most of my colleagues (“chronic hospitals—you'll never see anything interesting in
those
places”) revealed itself as the complete opposite: an ideal situation in which to observe, to care, to explore.
Awakenings
would have been written, I think, even if there had not been any “awakening”: it would then have been
People
of the Abyss
(or
Cinquante Ans de Sommeil,
as the French edition has it), a delineation of the stillness and darkness of these arrested and frozen lives, and of the courage and humor with which patients, nonetheless, faced life.

The intensity of feeling for these patients, and equally of intellectual interest and curiosity about them, bound us together as a community at Mount Carmel; and this intensity rose to a peak in 1969, the actual year of the patients' “awakenings.” In the spring of that year, I moved to an apartment a hundred yards from the hospital and would sometimes spend twelve or fifteen hours a day with our patients. I was with the patients constantly—I grudged the hours of sleep—observing them, talking with them, getting them to keep notebooks, and keeping voluminous notes myself, thousands of words each day. And if I had a pen in one hand, I had a camera in the other: I was seeing such things as had never, perhaps, been seen before—and which, in all probability, would never be seen again; it was my duty, and my joy, to record and bear witness. Many others also dedicated themselves, spent countless hours in the hospital. All of us involved with the patients—nurses, social workers, therapists of every sort—were in constant communication: talking to each other excitedly in the passage, phoning each other on weekends and at night, constantly exchanging new experiences and ideas. The excitement, the enthusiasm, of that year was remarkable;
this,
it seems to me, was an essential part of the
Awakenings
experience.

And yet, at the start, I scarcely knew what to expect. I had read the half-dozen reports on L-DOPA published in 1967 and '68, but felt my own patients to be very different. They did not have ordinary Parkinson's disease (like the other patients reported), but a post-encephalitic disorder of far greater complexity, severity, and strangeness. How would
these
patients, with their so-different disease, react? I felt I had to be cautious—almost exaggeratedly so. When, early in 1969, I embarked on the work which was later to become
Awakenings,
I conceived it in quite limited and narrowly “scientific” terms—as a ninety-day, double-blind trial of L-DOPA in a large group of patients who had become institutionalized after having encephalitis. L-DOPA was considered an experimental drug at this time, and I needed to get (from the Food and Drug Administration) a special investigator's license to use it. It was a condition of such licenses that one use “orthodox” methods, including a double-blind trial, coupled with presentation of results in quantitative form.

But it became obvious within a month or less that the original format would have to be abandoned. The effects of L-DOPA in these patients was decisive—spectacular; while, as I could infer from the precise 50 percent failure rate, there was no significant placebo effect whatever. I could no longer, in good conscience, continue the placebo but had to try L-DOPA in every patient; and I could no longer think of giving it for ninety days and then stopping—this would have been like stopping the very air that they breathed. Thus what was originally conceived as a limited ninety-day experiment was transformed instead into a historical experience: a story, in effect, of life for these patients as it had been before L-DOPA, and as it was changed, and as it was to become, after starting treatment with L-DOPA.

Thus I was impelled, willy-nilly, to a presentation of case-histories or biographies, for no “orthodox” presentation, in terms of numbers, series, grading effects, etc., could have conveyed the historical reality of the experience. In August 1969, then, I wrote the first nine case histories, or “stories,” of
Awakenings.

The same impulse, the same sense that one had to convey stories and phenomena—the drama of stories, the delight of phenomena—led me to write a number of letters to the editor, which I dispatched to the
Lancet
and the
British Medical Journal
early the next year. I enjoyed writing these letters, and as far as I could gather, readers of these journals enjoyed reading them too. There was something about their format and style that allowed me to convey the wonder of the clinical experience, in a way that would have been quite impossible in a medical article.

I now decided to present my overall observations, and my general conclusions, while still adhering to an epistolary format. My earlier letters to the
Lancet
had been anecdotal (and everyone loves anecdotes); I had not yet attempted any general formulations. My first experiences, the patients' first responses, in the summer of '69, had been happy ones; there had been an astonishing, festive “awakening,” at the time—but then all of my patients ran into trouble and tribulation. I observed, at this time, not only specific “side-effects” of L-DOPA, but certain general patterns of trouble—sudden and unpredictable fluctuations of response, the rapid development of oscillations, the development of extreme sensitivity to L-DOPA, and finally, the absolute impossibility of matching dose and effect—all of which I found dismaying in the extreme. I tried altering the dose of L-DOPA, but this no longer worked—the “system” now seemed to have a dynamic of its own.