When we visit the doctor’s office, we fill out forms and check items on lists. Age? Ethnicity? History of heart disease? Allergies to medications? Cancer in the family? To enter the American health care system is to grow accustomed to thinking of yourself in the logic of categories. I am a white male of a certain age whose family has a history of cancer. In this description, my father’s agonizing death has all but disappeared.
Of course, we see this incongruence — between our personal experience and that which fits neatly into categories — elsewhere too. For example, whatever our legal name is, we are encouraged to define ourselves not by familial relation (John-son) or by profession (Carpenter) but by our ZIP code and socioeconomic status. But somehow in the doctor’s office the whole business seems, to me anyway, more dreary and more emptying.
Yes, categories can save. A doctor’s-office checklist is a spell against dying. Its bureaucratically enforced identity politics is the price we pay simply for living. But is it the price that we must pay?
These thoughts have been prompted by my revisiting a book I first read several decades ago: the neurologist Oliver Sacks’s Awakenings, first published fifty years ago. It is, I believe, an essential book for our moment. It is a kind of manifesto for a forgotten humanism. And humanism — properly understood, properly chastened — forcefully repudiates the tyranny of categories.
Though Awakenings was published in 1973, its story begins much earlier, in the epidemic of encephalitis lethargica that spread across the world from, roughly, 1916 to 1927, after which the disease disappeared, completely and inexplicably. Sacks writes that nearly five million people contracted this “sleeping sickness,” and that a third of those died, many during the great influenza pandemic of 1918, when “the encephalitis assumed its most virulent form.” Among those who survived, some recovered completely; some had lingering symptoms, though not enough to prevent them from leading fairly normal lives into old age; and others were permanently thrown into a catatonic state:
They would be conscious and aware — yet not fully awake; they would sit motionless and speechless all day in their chairs, totally lacking energy, impetus, initiative, motive, appetite, affect or desire; they registered what went on about them without active attention, and with profound indifference. They neither conveyed nor felt the feeling of life; they were as insubstantial as ghosts, and as passive as zombies.
Many of them also experienced symptoms that are associated with Parkinson’s disease: feeling irresistible impulses to move energetically, and equally irresistible torpor. This led Sacks and other physicians to think that encephalitis and Parkinson’s were somehow related.
The second phase of the book’s story began in 1960, when researchers discovered that the diseased parts of the Parkinsonian brain exhibit a deficiency of a chemical called dopamine. Subsequent attempts to replenish the supply of dopamine in the patients’ brains proved inconclusive, because dopamine itself does not pass the blood–brain barrier, and so doctors had to introduce its metabolic precursor, L-DOPA, into the brain, where it converted into dopamine.
But, and this is the third phase of the story, in 1967 a doctor at Brookhaven National Laboratory named George Cotzias discovered that the doses of L-DOPA that had previously been given to Parkinson’s patients were far too small, and that, by slowly acclimating patients to higher and higher doses, he could produce astonishing relief of their symptoms. He and his colleagues published their findings in an article in the New England Journal of Medicine — and this came to the attention of Oliver Sacks.
Phase four: Sacks was then working at what, in Awakenings, he calls Mount Carmel Hospital, in a fictional village on the Hudson River. (In reality, he was working at a hospital named Beth Abraham Home in the Bronx; it’s now called Beth Abraham Center for Rehabilitation and Nursing.) The discoveries by Cotzias and his colleagues were obviously of great interest to him, yet he hesitated — for nearly two years — to administer those shockingly high doses of L-DOPA: “The patients under my care were not ‘ordinary’ patients with Parkinson’s disease: they had far more complex pathophysiological syndromes, and their situations were more complex, indeed without precedent.” These encephalitis patients “had been institutionalized, and out of the world, for decades — in some cases, since the time of the great epidemic,” which by this time was half a century ago. It was simply impossible to know how they would respond to the doses of L-DOPA that Cotzias had found necessary — though Sacks did know that lower doses were useless. “Thus there was an element of the extraordinary, the unprecedented, the unpredictable. I was setting out, with my patients, on an uncharted sea.”
After Sacks’s patients had been on L-DOPA for a year, he and his colleagues wrote a letter to the Journal of the American Medical Association summarizing their experiences. As he explains in a foreword to Awakenings:
In the summer of 1970 … I reported these findings, describing the total effects of L-DOPA in 60 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.
Take note of that last word: “understanding.” It will prove vital.
The responses of other medical colleagues to this letter were, generally speaking, angry. “I was astonished and shocked by the storm that blew up,” he wrote. Some doctors accused him of making it all up; others said that, even if the story were true, it shouldn’t have been told because of the damage it could do to the morale of doctors and patients alike. Taken aback, Sacks wrote up his experiences in great detail, featuring “statistics and figures and tables and graphs,” and submitted articles to a range of medical journals, all of whose editors flatly declined to publish them. It was only in 1972, when an editor at the BBC’s weekly magazine The Listener invited him to give an account for a general audience, that he finally got some of his and his patients’ experiences into print — and the resulting wave of interest led him to write the book Awakenings.
The response to that book from his fellow doctors? They largely ignored him. “There was not a single medical notice or review,” Sacks would write in his 1990 foreword to Awakenings. (The book was in fact reviewed, harshly, in The Lancet in 1973 and more favorably in JAMA a year later.)
Why this underwhelming response, especially given that Sacks’s initial letter to JAMA had generated so much anger? The answer may be the form of the book. Inspired by the freedom with which he had been able to write for The Listener, Sacks dispensed with “statistics and figures and tables and graphs,” and instead told his patients’ stories — and told them using their own words, their own ideas, their own metaphors.
“Romantic science” is a phrase that Oliver Sacks learned from A. R. Luria, a Soviet neuropsychologist. Luria was Sacks’s great hero. “When I heard him lecture in London in 1959,” Sacks recalled, “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.” Sacks could not then know how directly Luria’s work would become a model for his own.
In his late memoir The Making of Mind, Luria meditates on a distinction he learned from Max Verworn, a German physiologist: Scientists, Verworn believed, typically have either a “classical” or a “romantic” disposition, and this disposition affects how they approach science. “Classical scholars,” says Luria, “are those who look upon events in terms of their constituent parts. Step by step they single out important units and elements until they can formulate abstract, general laws. These laws are then seen as the governing agents of the phenomena in the field under study. One outcome of this approach is the reduction of living reality with all its richness of detail to abstract schemas.” By contrast, “It is of the utmost importance to romantics to preserve the wealth of living reality, and they aspire to a science that retains this richness.”
But this instinct for richness, Luria believed, has its costs as well. “Romantic science typically lacks the logic and does not follow the careful, consecutive, step-by-step reasoning that is characteristic of classical science, nor does it easily reach firm formulations and universally applicable laws. Sometimes logical step-by-step analysis escapes romantic scholars, and on occasion, they let artistic preferences and intuitions take over.”
Early in his career, Luria had worked within the classical model, and had produced the kinds of treatises that were expected within it. But late in his career — indeed, at just the time that Sacks was working with his patients at Mount Carmel — Luria published two case histories, The Mind of a Mnemonist (1968) and The Man with the Shattered World (1972). These would provide the pattern for the case histories that form most of Awakenings.
In his memoir, Luria expressed respect for both the classical and the romantic dispositions: “I have long puzzled over which of the two approaches, in principle, leads to a better understanding of living reality.” Sacks claimed to hold the same view: in a long footnote late in Awakenings he writes, “I should make it clear that my purpose is to distinguish two modes of clinical approach, and to indicate their complementarity — not to advocate either as against the other…. Thus our theme and plea relates to the complementarity of both approaches — the development of the technical without any forfeit of the human.” But this is largely window-dressing. Sacks clearly thought that the classical or technical model of medical science had become so overwhelmingly dominant that the human had indeed been forfeited and needed to be reclaimed. And the turn of Luria toward detailed narrative confirmed him in his own commitment to “romantic science.”
This turn was further confirmed for Sacks when he received a letter from Luria in July 1973:
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 & Psychiatry. Unfortunately, the ability to describe which was so common to the great Neurologists and Psychiatrists of the 19th century … was lost now, perhaps, because of the basic mistake, that mechanical & electrical devices can replace the study of personality.
We should not forget Luria’s warning: “Sometimes logical step-by-step analysis escapes romantic scholars, and on occasion, they let artistic preferences and intuitions take over.” In the book And How Are You, Dr. Sacks?, a 2019 memoir of Sacks written after his death, his friend Lawrence Weschler raises an uncomfortable question: Was Oliver Sacks a reliable narrator, or were his “clinical tales,” as he used to call them, just fantasies? Weschler dedicates a whole chapter of his book to the doubts that other neurologists had about his stories. But then there are also the testimonies of people who saw Sacks’s work up close and recalled his approach to patients.
One such testimony came from Margie Kohl, a collaborator in his work with patients receiving the L-DOPA treatment. “Most neurologists,” Kohl told Weschler, “are so stuck in their checklists and their Medicare-mill fifteen-minute drills that they miss everything; Oliver missed nothing.” When Weschler asked her whether Sacks had fabricated how his patients responded to the treatment, and their eloquence in describing what was happening to them, Kohl replied: “I know the charge is not true, and I was there.” She acknowledged that he would occasionally polish the patients’ speech: “Maria, for instance, was uneducated and he made her language flow, but this was as much as anything out of respect for her, an honoring and cherishing of her.” Moreover, “many of the patients did talk fluently and with great subtlety.” “But,” she said, “you had to be willing to sit at the bedside and listen.”
For over fifteen years prior to receiving the L-DOPA treatment, Leonard L., the last patient described in Awakenings and one of the most memorable, had been speechless and incapable of voluntary motion except to write out his thoughts in tiny movements on a small slate. And because he wrote so painfully slowly — “each letter might take a minute for him to spell out on his board,” Kohl explained — all the doctors except Sacks would ask him only yes-or-no questions. “But Oliver sat it out.”
As Sacks explains in his book, he had an almost religious commitment to certain deceptively simple questions: “How are you?” “How are things?” These, Sacks says, “are metaphysical questions, infinitely simple and infinitely complex.” And “the whole of this book is concerned with these questions … as they apply to certain patients in an extraordinary situation.” You have to ask the questions and then sit it out, simply wait, sometimes for hours, as the patients struggle to come up with answers for an experience that — as some of them, including Leonard L., fear — may be incommunicable. And this means practicing attentiveness to answers that have nothing to do with measurements or vital signs or data: “The fundamental questions — ‘How are you?’ and ‘What is it like?’ — can only be answered analogically, allusively, in terms of ‘as if’ and likeness, by images, similitudes, models, metaphors, that is, by evocations of one sort and another.”
Leonard L. tried to explain to Sacks the ineffably strange situation of feeling both impelled to act and restrained from acting — what in the medical literature are called akathisia (“motor impatience”) and akinesia (blocked movement), but what Leonard called “the goad and the halter.” He also described these experiences — slowly scratching out the words on his slate — as “an awful presence” and “an awful absence.” He went on to say — and you must imagine Sacks sitting still and quiet as Leonard takes as long as sixty seconds to make each letter — that “the absence is a terrible isolation and coldness and shrinking — more than you can imagine, Dr Sacks, much more than anybody who isn’t this way can possibly imagine — a bottomless darkness and unreality.” Sacks can’t imagine it, and yet Leonard, with his slate and his almost complete incapacity of movement, is drawing on every linguistic and imaginative resource he can summon to make him imagine it.
There is something utterly profound in this humanism of the abyss, for it is as though Leonard is saying, “This happened to me and to me only — but it could have happened to any other human being.” The act of striving to communicate the incommunicable is a double acknowledgment: of the chasm of experience that separates every person from every other person, and the possibility of using language and image to generate connection, to generate empathy, to generate what our ancestors called “fellow feeling” — out of nothing but air and chalk marks on a slate.
Sacks’s book is especially welcome and relevant because our current cultural moment is characterized, I believe, by a distinctive evacuation of the human. This happens in two contrasting but strangely complementary ways. First, we are regularly encouraged to perceive our experience in terms of a certain set of identity markers — typically involving race, ethnicity, gender, sexual orientation, the sorts of things that we can mark on checklists — and to deny that those who do not share those identity markers can fully grasp our experience. But, second, we are also encouraged to think of the many ways in which we share a perceptual and experiential world with the nonhuman, the other creatures with which we are, as humanities professor Donna Haraway says, “companion species.”
The dangers of identity politics have been often enough noted and critiqued; I’ve done some of that myself. But the insistence on our links with the nonhuman world is a more complex and ambiguous phenomenon. Some work in this field has been vital, and will continue to be — books such as Karen Bakker’s The Sounds of Life: How Digital Technology Is Bringing Us Closer to the Worlds of Animals and Plants and Frans de Waal’s Are We Smart Enough to Know How Smart Animals Are? are exhilaratingly provocative. But when they imply that the “fellow-feeling” between us and other species exhausts the fellow-feeling we share among human beings, then the realm of the human has been evacuated, and that is a grave loss.
Haraway writes fascinatingly about the experiences that humans share with pigeons. But Leonard L. would, for good reason, never bother to write on his slate for a pigeon, whereas he might well, and for equally good reasons, write on it for another human being who was willing to exercise the patience necessary to build the requisite bonds of trust. This “humanism of the abyss” reminds me that, while vast tracts of my experience are fully accessible only to me, I may share some partial understanding with any other human being. And that sharing transgresses the categories that we select when we’re filling out the forms encouraged by our identity politics. As the great Australian poet Les Murray suggests, this kind of sharing sprawls:
Sprawl gets up the nose of many kinds of people
(every kind that comes in kinds) whose futures don’t include it.
Haraway, for all her passionate commitment to “making oddkin,” to forming bonds with pigeons and machines, declares that she is “sick to death of bonding through kinship and ‘the family’” — “Make kin, not babies,” she tells “antiracist, anticolonial, anticapitalist, proqueer feminists of every color and from every people.” They are all welcome to the party, along with the pigeons, as long as they are “non-natalist.” As she straightforwardly asserts, “kinships exclude as well as include, and they should do that.” But one can easily imagine — even if Haraway can’t — a situation in which, very far from the bright lights of a festive occasion, she might be comforted by the presence of a Christian fundamentalist Trump supporter, a pro-natalist Good Samaritan in a red MAGA hat.
There is a partial but vital understanding that can arise between humans, even if they are on opposite ends of an ideological spectrum. That word “understanding” is a numinous one for Sacks, because, to him, understanding is precisely what “classical science” forgoes, and what “romantic science” cares about most deeply. In one of the long footnotes in Awakenings — really they are digressive essays — he writes,
We are faced, as physicians, with two sorts of problem, each requiring its own approach and language: one is the problem of identification, the other is the problem of understanding. Identification, in this sense, is essentially legal in nature — the same term (“case”) is used in medicine and law. Faced with a “case” of something or other, we seek for “evidence” which will enable us to arrive at a diagnostic decision…. When we have gathered the requisite testimony we say, “This is a case of such-and-such” and “The requisite treatment is such-and-such”: the case has been “considered” and is now ready to be “disposed of” or “closed.”
Within this model, he goes on to explain, “the business of ‘understanding’ is nowhere relevant, nor is the question of ‘care’ for the patient: diagnostic medicine could be entirely carried out by the rote application of rules and techniques, which a computer could undertake as well as a doctor.” And this is precisely the trajectory that classical science in the medical realm has been pursuing. Thus we fill out our forms, identifying ourselves to a system that is concerned with identification and not with understanding. Diabetic? History of heart disease? And we find the same in the political realm: Proqueer? White nationalist? We can never let ourselves sprawl; there’s no room for it on the forms.
A year after Sacks published Awakenings, an even more stringently uncompromising attack on the dominance of classical science in medicine appeared: Ivan Illich’s Medical Nemesis. Illich did not see modern medicine as limited or flawed but rather as a demonic force: “The true miracle of modern medicine is diabolical. It consists in making not only individuals but whole populations survive on inhumanly low levels of personal health.” Sacks would not have gone so far. But Illich and Sacks had in common a desire to reform the medical system — a desire that today still remains unfulfilled. Consider, for instance, Victoria Sweet’s God’s Hotel, which narrates the capture by Big Medicine of a San Francisco hospital that had been devoted to the medieval model of a hospital as an almshouse, a patient place of refuge for broken people.
Whether our current system can be reformed I don’t know. But I strongly believe that it does more than any other force in society to transform us into the kinds of people who come in kinds — to think of ourselves as having been identified, and to have kinship primarily with those who have been identified as we have. This happens not just to people who find their fellows-in-disease through hashtags on Instagram or TikTok, but to all of us who dutifully fill out our forms, the forms that enable us to identify our “case” — to become our categories.
A felt appreciation of our common humanity is not something given, but something that will, without cultivation and nurture, be lost. To take to heart Oliver Sacks’s book Awakenings, now in its fiftieth anniversary year, is to embrace the possibility of an awakening of our own: a recollection of what links us to people who — we may think, or are encouraged to think — are not our kin, not our kind. And more than that it is a challenge: a challenge to pull up a chair next to one of those strangers, to sprawl a bit, to listen for as long as it takes — as best we can manage, to sit it out — because a humanism that begins in the abyss of suffering doesn’t have to stay there.
The New Atlantis is building a culture in which science and technology work for, not on, human beings.
A Humanism of the Abyss