Sunday, August 30, 2015

Oliver Sacks (1933-2015)

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"Oliver Sacks, the world-renowned neurologist and author who chronicled maladies and ennobled the afflicted in books that were regarded as masterpieces of medical literature, died Aug. 30 at his home in Manhattan. He was 82."

"You are an abomination. I wish you had never been born."
-- an observation made to Olliver Sacks, quoted by Emily Langer

by Ken

The death of Oliver Sacks can't have surprised anyone, least of all Oliver Sacks himself, since he had gone as public as a person can (writing in the New York Times) with the news that he had terminal cancer. But that doesn't make it any less earth-shaking. For a lot of us, an overwhelming amount of what we've come to learn about the workings (and nonworkings) of the human brain, and even the human mind (i.e., the brain in working context) have come through his prolific and deeply felt writings.

In August 2010, for example, I wrote -- in some awe -- a post called "Oliver Sacks opens a window, personally, on the condition of 'face-blindness,'" about Sack's just-appeared New Yorker piece about prosopagnosia, whose sufferers are unable to recognize faces. In the piece he made me see how this goes to the heart of the way we perceive and make sense of the world around us -- and also startled me with the revelation that his knowledge of the condition began at first hand.

Here's a bit more of Emily Langer's WaPo obit:
An Englishman who made his life in America, Dr. Sacks devoted his career to patients with rare, seemingly hopeless conditions of the nervous system. He distinguished himself both in the clinic and on the printed page and was often called a “poet laureate” of modern medicine.

His books, many of which were bestsellers, generally took the form of clinical anecdotes. A man who mistakes his wife for a hat, an artist who can no longer see in color, a hospital full of patients gloriously, but fleetingly, “awakened” from years-long catatonia: In each case, Dr. Sacks sought to uncover some wisdom, medical or moral.
Not surprisingly, the obit is mostly admiring, but Emily does cite two general, quite harsh criticisms. The one I've quoted above is buried pretty deep in the piece; we'll come back to it. Here's the other:
Dr. Sacks discomfited some readers, who maintained that he capitalized on his patients’ suffering to form handy parables. Tom Shakespeare, a British disability rights activist, called him “the man who mistook his patients for a literary career.”
Now I haven't read the source, and I don't especially care to seek it out. It's possible that in context Tom Shakespeare isn't a total nincompoop and is conjuring a trap that the kind of writing Oliver Sacks did has to guard against. It doesn't sound like that's what he meant, but let's entertain the possibility that he's not the total nincompoop this quote would make him out to be. If you were to make up a list of writers -- neurological professionals or otherwise -- who had the largest positive impact on understanding of and care for the neurologically impaired, my guess is that Oliver Sacks would occupy the top 50 positions, at a conservative estimate.

For a fuller appreciation, we're going to turn to his longtime New Yorker and medical colleague Jerome Groopman, the magazine's great writer on medical subjects. So let's turn back to the other judgment rendered about Sacks, which as it happens came from the subject's mother. Now when a man has been called "an abomination" by his mother, who further expressed the wish that he had never been born, you would think it might have a certain, um, piquancy, a certain resonance, in his life's story.

Even if you didn't know what might have produced such a judgment, I'm guessing you wouldn't have much difficulty guessing. Here's the quote again, with a bit more context:
Oliver Wolf Sacks, one of four sons in an observant Jewish family with many scientists, was born in London on July 9, 1933.

Both his parents, he said, were “medical storytellers.” He went on house calls with his father, a Yiddish-speaking family doctor, and studied anatomy with his mother, a surgeon who sought to instill in her son a love of anatomy by performing dissections with him.

She also instilled in him what he described as a sense of shame about his sexuality.

“You are an abomination,” she told him, Dr. Sacks recalled, when she learned of her son’s homosexual leanings. “I wish you had never been born.”

Dr. Sacks reflected on the exchange years later in “On the Move,” a memoir that would be his last volume published in his lifetime.

“We are all creatures of our upbringings, our cultures, our times,” he wrote. “My mother did not mean to be cruel, to wish me dead. She was suddenly overwhelmed, I now realize, and she probably regretted her words or perhaps partitioned them off in a closeted part of her mind. But her words haunted me for much of my life and played a major part in inhibiting and injecting with guilt what should have been a free and joyous expression of sexuality.”
Now, as promised, here's the beautiful piece Jerome Groopman put up this afternoon on the New Yorker website:

Oliver Sacks, a dear colleague of mine at The New Yorker and in the world of medicine, was an inspiration to me and to countless physicians. A great deal will be said in the coming days about Oliver’s unique literary output -- masterful books including “An Anthropologist on Mars,” “Awakenings,” and “The Man Who Mistook His Wife for a Hat.” But we should remember that he also embodied in his medical practice a kind of ideal approach -- creative, sensitive, and large-hearted -- to his many patients. He was an extraordinary and exemplary doctor.

Neurology is often depicted as a discipline of great detachment. Sacks, who was eighty-two when he died, trained in the field before the advent of the CT scan and the MRI. He learned to observe his patients in extreme detail, calling on his professional training and uncanny perception to make meticulous analyses of motor strength, reflexes, sensation, and mental status; in doing so, he arrived at a diagnosis that might locate a lesion within the anatomy of the brain or spinal cord. And yet, because medical technology had only gone so far in those days, once this intellectual exercise was completed, there was often very little that could be done to ameliorate most neurological maladies.

Sacks showed that it was possible to overcome this limited perspective. He questioned absolutist categories of normal and abnormal, healthy and debilitated. He did not ignore or romanticize the suffering of the individual. He sought to locate not just the affliction but a core of creative possibility and a reservoir of potential that was untapped in the patient. There was case history, for instance, of a color-blind painter who lost all perception of color discovered he could capture the nuances of forms and shapes in hues of black and grey with great mastery.

As both a physician and as a writer, Oliver’s two great themes were identity and adaptation. Illness, he made plain, need not rob us of our essential selves -- and this was something he exemplified in his final months, as a he continued to write remarkable essays even as cancer began to sap his strength and overwhelm him. Sacks understood our frequent ability to adapt, and emphasized that the capacity for someone to adapt to a particular condition -- amnesia, blindness, deafness, migraines, phantom-limb syndrome, Asperger’s syndrome, and countless other conditions -- cannot be known from the outset. These concepts grew from his study of zoology and evolution at Oxford. He similarly saw in medicine a great diversity among individual patients, and the inherent uncertainty of the outcome of a particular disorder. These unknowns gave hope to patients guided by the right doctor -- a hope he captured in his description, in “Awakenings,” of catatonic-seeming encephalitis patients at Beth Abraham Hospital, in the Bronx, who had been written off as “locked in” and then revived, at least provisionally, by drugs like L-Dopa.

Sacks was a contrarian who refused to compromise this approach to the sick and the suffering. He resisted the powerful current of modern practice that seeks the generic. He rejected a monolithic mindset, and retrieved the individual from the obscuring blanket of statistics. This put him outside of the academy, exiled to chronic-care institutions. Through his writing, Sacks ultimately received recognition for advancing a unique form of clinical scholarship that was largely abandoned: the study of the single person within the context of his own life. Ever the acute observer, his case histories confirmed that under a single diagnostic term was a spectrum of human biology. No two patients are ever the same, he emphasized. When examining patients on the autistic spectrum, for example, he highlighted, and informed the public about, individuals with the capacity to draw precisely from memory, the capacity to make calculations nearly at the speed of a computer, or the ability to listen to a piece of music and reproduce it on the piano.

Sacks made house calls, not only in California and New York where he practiced, but globally, visiting Dr. “Bennet,” a surgeon with Tourette’s syndrome in rural Canada or the autistic artist Stephen Wiltshire on a tour of Europe. In these visits, he practiced what might be called the medicine of friendship, showing genuine interest and respect to people who are often shunned. This was the therapeutic intervention when neurology lacked effective pills or procedures.

This did not mean Sacks was a Luddite. He was an avid reader of scientific journals, fascinated by scientific advancements in imaging the nervous system at work. He engaged in dialogue with Nobel laureates and lab scientists about the nature of consciousness, providing what they lacked -- the insights of a naturalist, a field worker.

Sacks also embodied an attribute that can be lost after people become famous: a boundless generosity of spirit. He encouraged young doctors and scientists to record their experiences and communicate them in prose, celebrating their endeavors rather than seeing them as a form of competition or threat. I believe his intense curiosity and boundless energy moved him to want to learn from the succeeding generation, as great teachers do.

Over the past years, Oliver revealed a part of his life that was once considered a debility and disorder -- his sexual orientation. The demeaning of this part of his person, he believed, was the cause for his descent into amphetamine abuse. Drugs may well have killed him decades ago, before his contributions to medicine and writing. It was clinical work, caring for others with competence and compassion, that proved therapeutic for the doctor, giving him the strength to break the powerful grip of drug use. After decades of celibacy, Oliver shared the last eight years of his life with the writer Billy Hayes.

In May, after I had reviewed “On the Move: A Life,” his autobiography, he sent me a letter about what he wanted to accomplish in the time left to him. “In whatever time remains,” he aimed to “pull together another book of case histories–some large … some small, even miniature.” Every dimension of the patient was meaningful in his thinking.
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Saturday, August 28, 2010

Oliver Sacks opens a window, personally, on the condition of "face-blindness"

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Neurologist Oliver Sacks has had a personal route to, and a personal stake in, understanding face-blindness.

"It is with our faces that we face the world, from the moment of birth to the moment of death. Our age and our gender are printed on our faces. Our emotions, the open and instinctive emotions that Darwin wrote about, as well as the hidden or repressed ones that Freud wrote about, are displayed on our faces, along with out thoughts and intentions. . . . Crucially, it is by our faces that we can be recognized as individuals."
-- Oliver Sacks, in "Face-Blind," in the August 30 New Yorker

by Ken

It was just recently that I read for the first time about "face-blindness," or prosopagnosia, and at first it seemed not just an arcane but a vaguely comical and minor affliction. Clearly, the first objective of Oliver Sacks (author of such books as Awakenings, The Man Who Mistook His Wife for a Hat, and Musicophilia: Tales of Music and the Brain) in this new New Yorker piece is to communicate its nature and seriousness.
At two and a half months, babies respond to smiling back. "As the child smiles," Everett Ellinwood writes, "it usually engages the adult human to interact with him -- to smile, to talk, to hold -- in other words, to initiate the processes of socialization. . . . The reciprocal understanding mother-child relationship is possible only because of the continual dialogue between faces." The face, psychoanalysts consider, is the first object to acquire visual meaning and significance.

But there's another storyline here. It's used as way of ushering us into the world of prosopagnosia, and the question of what other kinds of memory either are functionally identical or work similarly enough to be considered with it. However, it's also a revelation on the part of this gentle guide to so many of the brain's malfunctions. It's news to me, anyway, that the British-born Sacks, resident in this country since 1965 (and now a much-honored professor of neurology and psychiatry at Columbia University Medical School), is himself a lifelong sufferer from prosopagnosia.
I have had difficulty recognizing faces for as long as I can remember. I did not think too much about this as a child, but by the time I was a teen-ager, in a new school, it was often a cause of embarrassment. My frequent inability to recognize schoolmates would cause bewilderment, and sometimes offense -- it did not occur to them (why should it?) that I had a perceptual problem. I usually recognized close friends without much difficulty, especially my two best friends, Eric Korn and Jonathan Miller. But this was partly because I identified particular features: Eric had heavy eyebrows and thick spectacles, and Jonathan was tall and gangly, with a mop of red hair. Jonathan was a keen observer of postures, gestures, and facial expressions, and seemingly never forgot a face. A decade later, when we were looking at school photographs, he still recognized literally hundreds of our schoolmates, while I could not identify a single one.

It was not just faces. When I went for a walk or a bicycle ride, I would have to follow exactly the same route, knowing that if I deviated even slightly I would be instantly and hopelessly lost. I wanted to be adventurous, to go to exotic places -- but I could do this only if I bicycled with a friend.

And at 77, Sacks writes, "despite a lifetime of trying to compensate, I have no less trouble with faces and places." What recognition he is able to manage depends overwhelmingly on the combination of pronounced identifying characteristics like those he mentions above and, crucially a context in which he can connect them. What's lacking is a whole system of brain function that extends from recognition and identification of kinds of visual detail to an ability to store and then retrieve and connect those details. As so often happens in brain functions that we take for granted, it's vastly more complex than we realize until we really break it down and examine it -- and the potential for dysfunction is correspondingly wider.

The revolution of recent decades in understanding of which parts of the brain are involved in which activities, and which functions can be replicated elsewhere in the brain, has led to an overwhelming appreciation of how few functions are accomplished in single places in the brain. This is good news in that many functions can be farmed out to other locations in the event of disability in one; the not-so-good news, apart from the fact that many functions don't appear to be capable of such outsourcing, all those functions that involve multiple areas of the brain also require large quantities of coordination. To put it another way, in my strictly lay understanding, the more complex brain function turns out to be, the more vulnerable it is to breakdown.
Above all, the recognition of faces depends not only on the ability to parse the visual aspects of a face -- its particular features and their over-all configuration -- and compare them with others but also on the ability to summon the memories, experiences, and feelings associated with that face. . . .

Recognition is based on knowledge and familiarity is based on feeling, but neither entails the other. The two have different neural bases and can be dissociated; thus, although both are lost in tandem with prosopagnosia, one can have familiarity without familiarity in other conditions
And the opposite occurs too, Sacks notes -- "in people with Capgras syndrome, for whom faces, though recognized, no longer generate a sense of emotional familiarity."

Sacks explains that a key to understanding that he wasn't just "very bad at recognizing faces, as my friend Jonathan was very good at it," came when he traveled to Australia to visit his older brother Marcus, whom he hadn't seen in 35 years, "and discovered that he, too, had exactly the same difficulties recognizing faces and places," and "it dawned on me that this was something beyond normal variation, that we both had a specific trait, a so-called prosopagnosia, probably with a distinctive genetic basis."

He not only became more aware of the dimensions of his own situation but collected case histories of other sufferers.
As I continued to receive more and more letters from people with prosopagnosia or topographical agnosia [the apparently related difficulty recognizing places], it became clear to me that "my" visual problem was not uncommon and must affect many people around the world.

Face recognition is crucially important for humans, and the vast majority of us are able to identify thousands of faces individually, or to easily pick out familiar faces in a crowd. A special expertise is needed to make such distinctions, and this expertise is nearly universal, not only in humans but in other primates. How, then, do people with prosopagnosia manage?

In the past few decades, we have become very conscious of the brain's plasticity -- how one part or system of the brain may take over the functions of a defective or damaged one. But this does not seem to occur with prosopagnosia or topographical agnosia -- they are usually lifelong onditions that do not lessen as one grows older. People with prosopagnosia, therefore, need to be resourceful and inventive in finding strategies for circumventing their deficits: recognizing people by an unusual nose or beard, for example, or by their spectacles or a certain type of clothing.

This may mean features like "voice, posture, or gait," and as noted, context is crucial. Sacks offers examples such as neighbors he is able to recognize when they're with their distinctive dogs; without the dogs, the women are visual strangers. Between his own experiences and those of an assortment of fellow sufferers who have described theirs, it's a window to an understanding of an area of brain function that most of us probably have never been aware of. The good doctor also makes clear how much he has depended on his longtime assistant, Kate. With some amusement, for example, he recalls spending weeks in 1988 with the "memory artist" Franco Magnani and writing a piece about him for The New Yorker, only to have then-editor-in-chief Robert Gottlieb reply --
"Very nice, fascinating -- but what does he look like? Can you add some description?" I parried this awkward (and, to me, unanswerable) question by saying, "Who cares what he looks like?"

"Our readers will want to know," Bob said. "They need to picture him."

"I will have to ask Kate," I said. Bob gave me a peculiar look.

For anyone with any curiosity about the mysterious if not actually preposterous workings of our brain (such a bizarre apparatus that, as a number of scientists have pointed out, it's hard to imagine as the product of an especially intelligent "intelligent designer"), the piece is indispensable. For anyone with any appreciation of the job Oliver Sacks has done in guiding us through some of those mysteries, it's also a deeply moving read.

THERE IS AN AUDIO LINK --

which can be played online or downloaded, in which Dr. Sacks talks to newyorker.com editor Blake Eskin about prosopagnosia. He estimates that two to three percent of the population suffers from a serious version of it, and talks about how their plight can be eased by society, as that of dyslexics has been, starting with simple recognition of the condition.
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