Friday, April 01, 2005

The Inner Lives of Disordered Brains

By: Anne Harrington Ph.D.

One popular new novel is narrated by a boy with autism, another by a nun with epilepsy, a third by a man with Tourette syndrome. These are stories very different from the classic neurological case history, but, thanks to the pioneering efforts of Oliver Sacks and others, such stories are capturing the attention of scientists and the public in nonfiction accounts as well as novels, movies, and television dramas. Historian of science Harrington asks what we are learning from these voices out of worlds so unlike our own.

When writing up their cases, neurologists have traditionally dwelt far more on brain anatomy than on the inner experience of the patient whose brain ended up preserved in a jar. In little more than two decades, however, a new kind of story about brain disorders has emerged that is capturing the attention of both scientists and the general public. Pioneered by men like Alexandr Luria and Oliver Sacks, this new way of writing and thinking about brain-disordered people is motivated less by the question, “what mechanisms have gone wrong” and more by “what is it like to be a person with a brain injury, Alzheimer’s disease, autism, or Tourette syndrome?” Today, not only nonfiction narratives but also novels, movies, and television programs are speaking to us from a world both like and strangely unlike our own. Historian of science Anne Harrington, Ph.D., asks what we are learning.  

It became clearer that I would have to break out of a purely medical format and find another one that, while remaining faithful to the clinical, could go beyond it and point to something larger and deeper. —Oliver Sacks  

In 2003, a novel by Mark Haddon entitled TheCurious Incident of the Dog in the Night-Time rocketed to bestseller status in England and the United States, winning the Whitbread Book of the Year Award, the new Book Trust teenage fiction award, and the Guardian’s children’s fiction prize. The book is a mystery story with a twist: Its fictional narrator is a 15-year old boy with autism named Christopher, who has a literal, logical mind that makes him experience the world and human relationships in ways profoundly different from the rest of us:

My memory is like a film…And when people ask me to remember something I can simply press Rewind and Fast Forward and Pause like on a video recorder…If someone says to me, “Christopher, tell me what your mother was like,” I can rewind to lots of different scenes and say what she was like in those scenes. 

There is more to the popular success of Haddon’s book than meets the eye. Fifteen or twenty years ago people with brain disorders were, at best, “interesting cases” from which brain science might learn something useful. At worst, they were humanity’s damaged goods to be well hidden from the rest of us in institutions. They had no voices of their own, and no one seemed to wonder whether their inner lives might be of interest to—even offer lessons for—the rest of us.  

THE MAKING OF A NEW LITERARY GENRE

Now, all that has changed. Today, stories about what it feels like to live inside a disordered brain are in the limelight in ways previously inconceivable. Haddon’s novel sits on the bookshelves alongside other successful novels such as Jonathan Lethem’s Motherless Brooklyn, told in the voice of a character with Tourette syndrome, and Mark Salzman’s Lying Awake, about a nun who discovers that her spiritual visions are a consequence of her epilepsy. It also competes with the nonfiction but novelistic clinical writings of British neurologist Oliver Sacks, such as his Awakenings and The Man Who Mistook His Wife for a Hat, and with a growing number of genuine (as opposed to fictional) first-person accounts of what it is like to be inside a brain afflicted with autism or epilepsy or Tourette or Alzheimer’s or aphasia.

Novels and movies that draw us into the inner experience of characters with brain disorders not only reflect the increasing role of brain science in our culture but also offer a new way of understanding the human experience.

Jostling for our attention, too, are television documentaries about the inner world of brain disorders: Twitch and Shout (1995), about living with Tourette syndrome; the six-part 1996 The Mind Travellers, which features Oliver Sacks as its genial host; and Me, My Brain, and I (2002), about people with frontal lobe syndromes. Hollywood, always on the prowl for new cultural trends, has started to exploit a new perspective: showing a film’s action from the perspective of a person with a disordered brain. Memento, filmed from the viewpoint of an individual incapable of forming new memories, and A Beautiful Mind, which draws the viewer into the delusional subjective reality of the schizophrenic main character, are two successful examples. 

Where once we sought insights into the mysterious engines of subjectivity in the realm of unconscious processes and repressed memories and feelings, today we are more and more inclined to look to our biochemistry and neuroanatomy. 

Why have these narratives become so prominent? One answer is that they are part and parcel of the more general ascendancy of the brain sciences in our culture. Sixty years ago, the poet W.H. Auden penned an elegy for Sigmund Freud in which he declared that the psychoanalytic perspective functioned in our culture as “a whole climate of opinion.” Today, as cultural analyst Harold Blume put it in an essay written for The American Prospect in 2000: “It is neurology and neuroscience that excite the imagination, suggesting new aesthetic forms and new ways of conceiving human variation.” Where once we sought insights into the mysterious engines of subjectivity in the realm of unconscious processes and repressed memories and feelings, today we are more and more inclined to look to our biochemistry and neuroanatomy. 

That said, narratives about the inner world of brain disorder have a sensibility that sharply differentiates them from biological psychiatry, behavioral genetics, cognitive neuroscience, and other, more familiar forms of brain science. Their prominence provokes us to wonder anew about the impact contemporary brain science is having on our self-understanding. Is it the case, as sociologist Nikolas Rose has argued, that one key effect of the rise of the brain sciences has been a loss of concern with the richness of subjective life that preoccupied us in the past, a “flattening” (in his words) of the “deep psychological space that opened in the twentieth century”? What we learn from narratives about the inner world of brain disorder is that things may be a little more complex than Rose and many of his colleagues have suggested. The different inner lives we meet in these narratives are as psychologically rich as anything that ever came out of the Freudian cabinet of curiosities. We are on different cultural territory than we were a generation ago, to be sure, but it is far from clear that the view we are offered is significantly “flatter” than it was before. What kind of view then—of the brain and of ourselves—does this literature offer us? How did we arrive here? 

The different inner lives we meet in these narratives are as psychologically rich as anything that ever came out of the Freudian cabinet of curiosities.

THE NEUROLOGICAL CASE HISTORY AND ITS DISCONTENTS

A generation ago, there were no narratives about the inner experience of brain disorder remotely similar to what we find today. This does not mean, however, that no tradition existed of writing about the brain-disordered patient. The neurological case history, formalized with the rise of medical schools and clinical research institutions in the mid19th century, provided scant biographical details about the patient, made little if any effort to give insight into the patient’s perspective on his disorder, and kept the focus instead on observable behavioral and physical signs of defect or disease. Because it was believed that patients with brain disorders had few, if any, therapeutic options (many were, therefore, simply institutionalized), these patients’ case histories served essentially scientific and educational purposes. Enough case histories over time, prudently compared one with the other, would act to sort the bewildering world of brain disorder into a more or less logical taxonomy (the aphasias, the apraxias, the agnosias), and eventually they would allow understandings of the underlying universal principles of brain functioning and breakdown to emerge. 

A few cases in the 19th century— Phineas Gage, who survived a crowbar through his frontal lobe, and “Tan,” who was made speechless by damage to his third frontal convolution—did emerge from anonymity to play a role in larger debates about selfhood, morality, free will, and the existence of the soul. But even in cases such as these, patients remained objects of scientific scrutiny; they had little status as persons with perspectives of their own. What really interested the doctors and researchers was not these patients as subjects, but, rather, these patients’ brains as objects. The case history of even such a famous patient as Paul Broca’s “Tan” makes this clear: 

The patient died on 17 April, at eleven o’clock in the morning. The autopsy was done as soon as possible, that is to say, at the end of twenty-four hours. The temperature was slightly elevated. The cadaver showed no sign of putrefaction. The brain was shown a few hours later to the Anthropological Society, and then placed immediately in alcohol. The organ was so altered that we had to take great precautions to conserve it. Today it is in perfect condition, and it is deposited in the Dupuytren museum. 

In saying this, I am not suggesting that doctors were always without pity for their unfortunate patients, or that patients always suffered unacceptably in the hands of their medical investigators. My point is, rather, that we are dealing with a style of writing that reflected a certain set of assumptions about best medical practice and proper doctor-patient relationships. In the 19th century, not just neurology but medicine in general practiced under the cloud that has been called “therapeutic pessimism”— the conviction that medicine could do little for patients with serious diseases. Furthermore, the relationship of brain-injured patients with their physicians was often predicated on the assumption that these patients were more or less mentally incompetent. Small wonder, therefore, that their brains (especially when removed and fixed with alcohol to allow leisurely study) generally seemed more interesting than their lived experiences as whole persons. 

Small wonder, therefore, that their brains (especially when removed and fixed with alcohol to allow leisurely study) generally seemed more interesting than their lived experiences as whole persons. 

When exceptions occurred, they were inspired by exceptional circumstances, for example World War I. One key effect of that war was to transform the “typical” neurological patient from someone who was elderly, low status, and likely to die to someone who was young, otherwise healthy, more or less heroic, sometimes an officer of considerable rank, and eager to get back to living. This change in the typical patient profile had the effect of shifting the doctor-patient relationship onto more intimate and egalitarian lines. One sees the results of this shift in a style of case history pioneered by Sir Henry Head in England and Kurt Goldstein in Germany that contained a richness of biographical reference and affectionate respect for the patient’s perspective that had never been seen in neurology before. 

In Head’s 1926 Aphasia and Kindred Disorders of Speech, one extensive case history of a young staff officer illustrates the new ground onto which we have arrived. Kicked on the left side of his head by a horse, this man suffered significant loss of linguistic capacity and was sent to Head’s hospital to convalesce and be evaluated. Highly intelligent, he had been a dashing military figure who lived in Kashmir and spoke several languages before his injury. As a convalescent, Head tells us, the officer continued to maintain as active a life as his condition would allow. He enjoyed frequent games of golf, took occasional walking tours, played chess and checkers, and went regularly to Head’s home for tea (where even his views on other guests were duly recorded in the case history). Over time, he improved considerably, not least because his sister had developed a rehabilitation program for him that used educational strategies derived from the German educationalist Friedrich Froebel (inventor of the concept of the “kindergarten”). Head’s narratives were still told in the service of science, and his patients were still just “characters” with no independent authorial voice, but, nonetheless, he was breaking new ground. 

In the end, however, the most radical challenge to the norms of the medical case history came not from the travails of war but from apparent new insights into the nature of a disorder long thought to have a neurological—or “nervous”—origin: hysteria. When Sigmund Freud took it upon himself to propose a different way of thinking about hysteria, he simultaneously offered a new way of writing about the disorder. His case histories focused on the inner world of his patients and on hidden connections between symptoms of disease and the patients’ life stories. In Freud’s hands, each case was exquisitely plotted to resemble a drama of discovery in which the physician acted like a detective on the hunt for crucial clues. 

Tellingly, Freud insisted that his case histories looked the way they did because hysteria was not a neurological disorder at all, but, rather, the result of a disorderly life story. For Freud, reclaiming the missing pieces of a patient’s life story was the key to the patient’s recovery: 

It still strikes me as strange that the case histories I write should read like short stories and that, as one might say, they lack the serious stamp of science. I must console myself with the reflection that the nature of the subject is evidently responsible for this, rather than any preference of my own. The fact is that local diagnosis and electrical reactions lead nowhere in the study of hysteria, whereas a detailed description of mental processes such as we are accustomed to find in the works of imaginative writers enables me, with the use of a few psychological formulas, to obtain at least some kind of insight into the course of that affliction…as histories of this kind…have…an intimate connection between the story of the patient’s sufferings and the symptoms of his illness. 

The Soviet neurologist Alexandr Luria discovered in Freud’s style of writing a model for his own efforts to develop a new way of writing about brain disorder—one that, like Freud’s, would be rich with biographical detail and focus on the interior experience of the patient. 

THE ROMANTIC NEUROLOGY OF ALEXANDR LURIA 

Freud was explicit, however, that his rich, novelistic style of case history was neither necessary nor appropriate for fields of medicine concerned with physical disorders, such as neurology. He wrote the way he did, he made clear, because he had decided that hysteria was not a brain disorder. What would be the point of introducing explorations of inner experience for cases of true brain disorder? At least one scientist, however, thought there might be one. In the first decades of the 20th century, the Soviet neurologist Alexandr Luria discovered in Freud’s style of writing a model for his own efforts to develop a new way of writing about brain disorder—one that, like Freud’s, would be rich with biographical detail and focus on the interior experience of the patient. According to Luria, such a style of writing offered the prospect of leavening the “classical” approach of neurology with a much-needed “romantic” alternative. In his memoirs, written years later, Luria explained: 

Classical scholars 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…Romantics in science want neither to split living reality into its elementary components, nor to represent the wealth of life’s concrete events in abstract models that lose the properties of the phenomena themselves. 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. 

Originally trained as a psychologist, Luria underwent further medical training in the 1930s (partly, it is felt, to escape oppression from Soviet government authorities, who had condemned the approach to psychology he had previously studied). During World War II, he was assigned to work with the brain-injured soldiers and in this way began a new career, sealing for himself an international reputation with three important monographs: Traumatic Aphasia (1947), The Role of Speech in the Regulation of Normal and Abnormal Behaviour (1955), and Higher Cortical Functions in Man (1962). It was not until the 1970s that he felt confident enough to publish his efforts at developing a “romantic” complement to those other works: two slim volumes entitled respectively The Mind of a Mnemonist and The Man with a Shattered World. “In each of these works,” he later recalled, “I tried to follow in the steps of Walter Pater in Imaginary Portraits, written in 1887, except that my books were unimagined portraits. In both books, I described an individual and the laws of his life.” (Pater’s Imaginary Portraits were rich interior descriptions of fictional characters, who functioned in part as psychological allegories.) 

Luria’s The Mind of the Mnemonist told the story of a man named Sherashevsky (called just “S.” in the narrative), whom Luria first met in the 1930s and continued to study for some 30 years. Sherashevsky was the mnemonist of the book’s title, a man who apparently never forgot anything he experienced, no matter how trivial or how complex. Not only that, his experiences of recollection were bizarrely different from the norm. “There was no distinct line, as there is for others of us, separating vision from hearing from a sense of touch or taste,” Luria noted: 

“You won’t forget the way back to the institute?” I asked, forgetting whom I was dealing with. “Come now,” S. said. “How could I possibly forget? After all, here’s this fence. It has such a salty taste and feels so rough; what’s more it has such a sharp, piercing sound.” 

In many ways, as Luria himself recognized, Sherashevsky seemed like someone who had just stepped out of the pages of a fantasy book. “Here begins an account of phenomena so amazing,” Luria interjected at one point in his book, “that we will many times be left with the feeling like little Alice had after she slipped through the looking glass and found herself in a strange wonderland.” Nevertheless, it was Luria’s view that this man with the fabulous gift of memory in the end deserved our pity more than our admiration. Because he remembered all things indiscriminately, he was always at risk of drowning in the richness of his memories and remained forever unable properly to connect to the real world. “He had a family —a fine wife and a son who was a success— but this…he experienced as through a haze,” said Luria. “Indeed, one would be hard put to say which was more real for him: the world of imagination in which he lived, or the world of reality in which he was but a temporary guest.” This made him (as Jerome Bruner so aptly observed in his introduction to Luria’s book) a tragic character “in the spirit of Kafka or Beckett…who takes his place beside Joseph K. in The Trial, or in the gallery of lost souls that Beckett has brought to life in his stories and plays.” 

If Sherashevsky was for Luria a “lost soul” of clinical neurology, then Zasetzky, the focus of The Man with a Shattered World, was its poignant hero. During World War II, Zasetsky had been wounded with a bombshell that resulted in “massive damage to the left occipito-parietal region of his brain.” The injury shattered his entire perceptual and cognitive world: vision, memory, bodily awareness, language, orientation all collapsed into a series of shifting, bewilderingly disjointed experiences. He was convinced that his life was over, but nevertheless (in his words) “something keeps insisting I have to live.” Thus he undertook the Herculean task for him of trying to impose order back onto his experiences by writing a journal of his thoughts and memories. As Luria recalled: 

He worked on this journal day after day for twenty-five years, struggling with every word and sentence. Sometimes it took him an entire day to write half a page. He first called his journal “The Story of a Terrible Brain Injury ” but later changed it to “I’ll Fight On.” His diary is now more than three thousand pages long. 

Luria organized The Man with a Shattered World as a narrative in two voices: that of the patient, as it came through in excerpts from his journal, and that of his doctor, Luria himself, commenting on the patient’s experiences and providing analytic context for making sense of them. Luria insisted that Zasetsky was the “real author” of the book and praised him as a man who—in spite of his disabilities (and because his frontal lobe area had remained intact)—was “acutely aware of what it means to be human” a man who was, therefore, prepared to fight “with the tenacity of the damned” to reclaim at least some of the functions lost with his injury. 

Luria concluded, Zasetsky’s struggle was worthwhile as an end in itself. His brain was shattered, but his spirit remained defiant. It is in this existential rather than clinical sense that Luria could conclude that his patient “in the long run...won his fight.”

Was Zasetsky’s struggle worthwhile? Luria’s conclusion tells us just how far he was prepared to deviate from the evaluative norms of traditional medicine. Yes, he declared, but not because it led to much if any improvement in Zasetsky’s condition— 25 years later he remained “in many respects …as helpless as before.” No, Luria concluded, Zasetsky’s struggle was worthwhile as an end in itself. His brain was shattered, but his spirit remained defiant. It is in this existential rather than clinical sense that Luria could conclude that his patient “in the long run...won his fight.” 

OLIVER SACKS AND THE CELEBRATION OF WONDER IN NEUROLOGY

In the early 1970s, one of Luria’s “romantic” case histories came to the attention of Oliver Sacks. He found it so extraordinary that he thought it was a novel. When he realized the truth, he knew that he had found something he had been desperately seeking: a new model for writing about cases of brain disorder. In the 1960s, Sacks had taken a position at a New York hospital that housed scores of paralyzed patients who had survived, but not recovered from, the great epidemic of “sleeping sickness” (encephalitis) in the 1920s. Sacks had given these patients what was at that time an experimental drug, L-dopa, which was aimed at replacing the neurotransmitter dopamine in the brain. As a result, they “awoke” from decades of imprisonment in their frozen bodies, exploding back into life in ways that were at once wondrous, moving, and terrifying. For Sacks, this was both a medically and a humanly “mind-blowing” experience, and he knew he had to share it. Although he made some initial attempts to communicate his observations in more conventional ways —letters to the editor of Lancet, publications in such journals as the Annals of Dentistry— he felt that his colleagues were, at best, lukewarm towards his efforts. At worst, he said in a 1983 article about the experience in the British Medical Journal, they were frankly hostile, “as if there were something intolerable in what I had written.”

 
The 1990 film based on Oliver Sacks’ Awakenings starred Robert De Niro as a sensitive and intelligent patient named Leonard and Robin Williams as Sacks, the neurologist who “awoke” Leonard from the paralysis caused by encephalitis.

Then the BBC popular magazine, The Listener, invited him to compose something about the L-dopa trials that would be appropriate for their lay audience. Sacks did so, and the experience, he recalled in the British Medical Journal article, “was as affirmative as the other was negative. Yes, I felt, yes, there are real people out there, who are imaginative and curious and want to know more. (They may not be neurologists, but, by God, they are real).” “It became clearer,” he concluded, “that I would have to break out of a purely medical format, and find another one that, while remaining faithful to the clinical, could go beyond it and point to something larger and deeper.” 

Whereas Luria, a generation earlier, had looked to Freud’s case histories for inspiration, Sacks now found inspiration in Luria. The result was Awakenings, a collection of patient narratives that, with their overt surrender to the existential drama of each case, broke all the rules of conventional case history writing. Sacks opened each narrative by painting a word picture of the patient as a young person, before succumbing to encephalitis. The reader was then asked to bear witness to the tragedy of the illness, with all of its lost life and potential. This set the stage for the drama of the pharmacologic “awakening” and the mixed blessings it bestowed on these long-frozen souls. 

The style of these cases, even more than that of Luria, was frankly novelistic. Sacks followed observations of one previously paralyzed patient, Hester Y., with a description of his own emotions and private thoughts (Had any neurologist previously ever thought it appropriate to record these?) as he observed her transformation: 

Completely motionless and submerged for over twenty years, she had surfaced and shot into the air like a cork released from great depth; she had exploded with a vengeance from the shackles which held her. I thought of prisoners released from gaol; I thought of children released from school; I thought of spring awakenings after winter sleeps; I thought of Sleeping Beauty; and I also thought, with some foreboding, of catatonics, suddenly frenzied. 

The stories Sacks told in Awakenings were so extraordinary that they seemed the stuff of fiction, and, in the end, they inspired fiction. In 1985, Harold Pinter wrote the play A Kind of Alaska, and in 1990 came the Oscar-nominated film Awakenings. Meanwhile, Sacks himself continued to publish a series of similarly “novelistic clinical tales” (as he began to call them) in such venues as The London Review of Books and The New York Review of Books; these were later gathered together in the best-selling The Man Who Mistook His Wife for a Hat (1987). 

All this, taken together, was much more than simply a revolt against the conventions of the narrowly written neurologic case history as a genre. It represented also, for the first time, a declaration of independence from the conventional view that the lives of brain-damaged patients were of interest only to specialists and professionals. On the contrary, said Sacks, the stories of brain-disordered people were fascinating and full of lessons for ordinary people. In the introduction to The Man Who Mistook His Wife for a Hat, he invited his readers to think of the brain injured as “travelers to unimaginable lands—lands of which otherwise we should have no idea or conception. The titles he chose for the stories in The Man Who Mistook His Wife for a Hat reinforced this message: “The Disembodied Lady,” “The Lost Mariner,” “The Man Who Fell out of Bed,” and, of course, the title story. 

In a time when most other branches of neuroscience were becoming popularly associated with mechanistic, disenchanting perspectives on selfhood and psyche (“I compute, therefore I am” in the disgruntled words of one critic), it is not hard to understand why the public would seize on this vision of the brain injured. By the 1990s, Sacks would be competing for market share with books written by other neuroscientists, such as Richard Cytowic’s account of synesthesia, The Man Who Tasted Shapes, and V. S. Ramachandran’s descriptions of the personal subjective experiences of his patients, Phantoms in the Brain: Probing the Mysteries of the Human Mind

PATIENT NARRATIVES AS A HUMANIZING FORCE

Sacks wanted the public, through his narratives, to experience wonder at the exotic natives who inhabit the baroque world of brain disorder, but that is not all he wanted. He also intended his stories to humanize brain disorders, to help the public realize that the brain-disordered, however odd they may at first seem, are in the end just struggling people, members of the larger human tribe after all. “We must deepen a case history to a narrative or tale,” he wrote in The Man Who Mistook His Wife for a Hat, because “only then do we have a ‘who’ as well as a ‘what,’ a real person, a patient, in relation to disease—in relation to the physical.”

Can one gaze in wonder at the strangeness of another person and, at the same time, experience human fellow feeling for that person? The instability at the heart of Sacks’ two-pronged agenda is palpable for anyone who spends much time with his work, and, on some level, he is as acutely aware of this as anyone else. In a 1996 interview with the UK Radio Times, timed to coincide with the showing of his BBC television series The Mind Travelers, he said: “I think there is sympathy and curiosity mixed with less noble attitudes like voyeurism for those who are different or disabled. People would [once] crowd to see the inhabitants of Bedlam on Sunday. But I do hope I can give a sense of lives that are interestingly ‘other’ and deserve respect and admiration.” 

 
Whether written by a neurologist such as Richard E. Cytowic, M.D., or by people sharing their own experience— for example, Temple Grandin, Ph.D., and Jean-Dominque Bauby—contemporary books about the inner experience of a disordered brain offer a humanizing message not found in the traditional neurologic case history.

In the past decade, the vision of these narratives as a humanizing force has been both re-energized and complicated because more and more brain-disordered people themselves—with disorders ranging from Tourette to aphasia to autism to Alzheimer’s —have decided to tell their own stories, to explain in their own words (sometimes with a bit of help) what it is like to be them. It should not surprise us that, in a field that Sacks himself now tends to call “neuroanthropology,” the native inhabitants would begin to insist on the right to speak out on their own behalf. In our post-colonialist world, that is what has happened to all branches of anthropology. Why should this one be any different? 

Tellingly, some of the earliest patient memoirs were written by the same people who had previously been “characters” in Sacks’ narratives. An historical story needs still to be pieced together about how and why they were able to emerge as authors in their own right. What is clear at this point is that the goals of these patient-authored memoirs partially overlap with, but are not identical to, the goals of the popular narratives written by such doctor-authors as Sacks. 

Some of the books published in recent years have an elegiac tone; they function as poignant, courageous last testaments from people who discover that sharing their story, sharing their experience, is the sole remaining meaningful act they can perform. Jean-Dominique Bauby’s 1997 The Diving Bell and the Butterfly describes what it is like to have one’s intact subjectivity suddenly locked inside a body that will no longer move and can no longer speak. Bauby had an ultimately fatal stroke that resulted in a rare condition called “locked-in syndrome,” leaving him able to move only his left eyelid. Cary Henderson’s 1998 Partial View: An Alzheimer’s Journal describes the process of Alzheimer’s from the inside, what it feels like little by little to lose one’s memory and everyday moorings. Henderson recorded his increasingly disjointed thoughts onto a tape that was then edited by family members. 

Other books have a more activist sensibility. In one way or another, they insist that even if one is born with a brain that society deems abnormal, one might still be a human being worth valuing—not in spite of, but because of one’s unusual brain. Thus, in her 1995 book Thinking in Pictures, a woman with high-functioning autism, Temple Grandin, pointed to ways in which her highly visual, rational, and concrete form of thinking enables her to do things— design more humane mechanisms for handling livestock—that so-called normal people cannot. Comparing herself with Mr. Spock of Star Trek and her mind with a VCR player and TelePrompTer, she insists that, in spite of the suffering her disorder has caused her, she would not give it up if she could, because of the good things it enabled her to achieve. “I believe my contributions to humane slaughtering of cattle and improved treatment of animals have been facilitated by my abnormality.” 

Similarly, Peter Hollenbeck, a neurobiologist with Tourette syndrome (the “ticcing” disease), wrote in this journal (Summer 2003) that “Tourette differs from other neuropsychiatric disorders in one simple way: It is a largely a disease of the onlooker. When I tic, I am usually not the problem. You are.” Today, the politics of what is increasingly called “neurodiversity” continues to heat up. One Web site (www.neurodiversity.com) celebrates “the variety of human wiring” and in a whole range of ways seeks to wrest public policy away from the majority population of “neurotypicals” who, its creators claim, cannot see beyond the limitations of their own ways of thinking and feeling. 

TO WHAT END ARE THESE STORIES?

The most significant feature of this new literature is that it has found its primary audience not within the academy, but within (educated) popular culture. In this context, it does a variety of kinds of cultural work. Some of this work is ethical and communitarian: The message here is that people with brain disorders, however odd they may at first seem, are also real human beings with human dilemmas not so different from those of the rest of us. Some of this work is political and activist. People who are different, it says, are not necessarily disabled or worse than the rest. Public policy should focus less on curing these people and more on making space for them to be who they are. A reformist message is also found in some of this literature: The doctor-patient relationship is dehumanizing, it says; doctors must learn to see their patients, including their brain-damaged patients, as whole people with stories of their own. Still other parts of this literature see philosophical, even metaphysical import in narratives about the inner world of brain disorder: The message here is that the diverse experiences of the brain disordered offer us all a series of windows into the material, contingent, and constructed nature of human identity. 

Is any of this literature about the inner world of brain disorder of value to brain science? When J. Allan Hobson, well-known sleep and dream researcher, had a stroke in the medulla area of the brain at the age of 67, he decided to turn personal tragedy into a scientific opportunity. Throughout his stroke onset and recovery, he carefully recorded introspective observations of his experience. He then organized them with the aim of drawing attention, above all, to some overlooked psychological effects of brain stem injuries, especially on sleep and dreaming. His observations were published in Consciousness and Cognition in 2002; a slightly more popular version of his article appeared in Cerebrum in 2003. 

The result is a powerful document of a recovery process “from the inside” that will almost certainly be useful to researchers and clinicians. At the same time, as a genre, rare works like that of Hobson—brain scientists investigating the working of their own minds for science—sits uneasily with the memoirs, novels, and clinical tales I have reviewed in this article. Unlike those other kinds of narratives, Hobson’s primary goal is to advance knowledge of the workings of the brain and only secondarily is concerned with telling us “what it is like” to be him. He does not recount his story, first and foremost, in order to share an experience of suffering, to evoke empathy, or to cultivate an expanded sense of fellow-feeling in his readers. Tellingly, his tone is detached, and, when he describes his circumstances, he self-consciously returns to the standard conventions of the medical case history (“The patient-author is a 67-year-old married father of five…etc.”). Sometimes it is almost as if Hobson, as a clinician-researcher, is writing about someone other than himself. 

All of which leads me to conclude that the literature that interests me here— one that has its roots in a revolt against the conventional case history—needs in the end to be seen as less a scientific literature than a humanistic one. For all its many aims, it is concerned with the particular, the emotional, the value-laden, the meaningful, and the relational aspects of human experience. At its best, therefore, this literature functions to remind us that being a human being—a human brain—is still a more complex and richer thing than can be contained in the spare and reductionistic vocabulary and frameworks of our sciences. Perhaps, in the end, that is the most important message it has to offer neuroscience.



About Cerebrum

 
Bill Glovin, editor
Carolyn Asbury, Ph.D., consultant

Scientific Advisory Board
Joseph T. Coyle, M.D., Harvard Medical School
Kay Redfield Jamison, Ph.D., The Johns Hopkins University School of Medicine
Pierre J. Magistretti, M.D., Ph.D., University of Lausanne Medical School and Hospital
Robert Malenka, M.D., Ph.D., Stanford University School of Medicine
Bruce S. McEwen, Ph.D., The Rockefeller University
Donald Price, M.D., The Johns Hopkins University School of Medicine

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