by Oliver Sacks
There is, among Orthodox Jews, a blessing to be said on witnessing the strange: one blesses God for the diversity of his creation, and one gives thanks for the wonder of the strange. This, it seemed to me, was the attitude of the people of La Crete to the Tourette’s in their midst. They accepted it not as something annoying or insignificant, to be reacted to or overlooked, but as a deep strangeness, a wonder, an example of the absolute mysteriousness of Providence.
Touretters, with their impulses and cursings, can feel outcast, singled out by an unusual condition that no one around them shares or fully understands. Many have found themselves avoided or punished as children and barred as adults from restaurants and other public places. Lowell had faced this for years, and for him, therefore, La Crete was particularly sweet—it provided the first exemption he had ever known from a negative attention. Part of him fell in love with La Crete, so that he had visions of marrying a nice Mennonite girl with Tourette’s and living there happily ever after. “I felt the lure of New York,” Lowell reflected after we left, “but I also felt the lure of spending a life with a family and friends in a place like Tourettesville. But I was just a visitor, a very loved visitor, but still just a visitor. I was only part of their world for a very short time.”
* On another occasion we found ourselves in a shop filled with many clocks. Lowell felt alarmed when he saw all the pendulums swinging to and fro. “We can’t stay here,” he said. “I’ll get hypnotized.”
Urge
Walter B., an affable, outgoing man of forty-nine, came to see me in 2006. As a teenager, following a head injury, he had developed epileptic seizures; these first took the form of attacks of déjà vu that might occur dozens of times a day. Sometimes he would hear music that no one else could hear. He had no idea what was happening to him and, fearing ridicule or worse, kept his strange experiences to himself.
Finally he consulted a physician, who made a diagnosis of temporal lobe epilepsy and started him on a succession of anti-seizure drugs. But his seizures—both grand mal and temporal lobe—became more frequent. After a decade of trying different anti-seizure drugs, Walter consulted another neurologist, an expert in the treatment of “intractable” epilepsy, who suggested a more radical approach: surgery to remove the seizure focus in his right temporal lobe. This helped a little, though a few years later, a second, more extensive operation was needed. The second surgery, along with medication, controlled his seizures more effectively but almost immediately led to some singular problems.
Walter, previously a moderate eater, developed a ravenous appetite. “He started to gain weight,” his wife later told me, “and his pants changed three sizes in six months. His appetite was out of control. He would get up in the middle of the night and eat an entire bag of cookies, or a block of cheese with a large box of crackers.”
“I ate everything in sight,” Walter said. “If you put a car on the table, I would have eaten it.” He became very irritable, too, he told me:
I raged for hours at inappropriate things at home (no socks, no rye bread, perceived criticisms). Driving home from work a driver squeezed me on a merge. I accelerated and cut him off. I rolled my window down, gave him the finger, and began screaming at him, and threw a metal coffee mug and hit his car. He called the police from his cell. I was pulled over and ticketed.
Walter’s attention assumed an all-or-none quality. “I became distracted so easily,” he said, “that I couldn’t get anything started or done.” Yet he was also prone to getting “stuck” in various activities—playing the piano, for example, for eight or nine hours at a time.
Even more disquieting was the development of an insatiable sexual appetite. “He wanted to have sex all the time,” his wife said.
He went from being a very compassionate and warm partner to just going through the motions. He didn’t remember having just been intimate….He wanted sex constantly after surgery…at least five or six times a day. He also gave up on foreplay. He would always want to get right to it.
There were only fleeting moments of satiety, and within seconds of orgasm, he wanted intercourse again and again. When his wife became exhausted, he turned to other outlets. Walter had always been a devoted and thoughtful husband, but now his sexual desires, his urges, spread beyond the monogamous heterosexual relationship he had enjoyed with his wife.
It was morally inconceivable for him to force his sexual attentions on a man, woman, or child—internet pornography, he felt, was the least harmful answer; it could provide some sort of release and satisfaction, even if only in fantasy. He spent hours masturbating in front of his computer screen while his wife slept.
After he started viewing adult pornography, various websites solicited him to purchase and download child pornography, and he did. He became curious, too, about other forms of sexual stimulation—with men, with animals, with fetishes.*1 Alarmed and ashamed of these new compulsions, so alien to his previous sexual nature, Walter found himself in a grim struggle for control. He continued to go to work, to go out socially, to meet his friends for meals or movies. During these times he was able to keep his compulsions in check, but at night, alone, he gave in to his urges. Deeply ashamed, he told no one of his predicament, living a double life for more than nine years.
Then the inevitable happened, and federal agents came to Walter’s house to arrest him for possession of child pornography. This was terrifying, but it was also a relief, because he no longer had to hide or dissimulate—he called it “coming out of the shadows.” His secret was now exposed to his wife and his children, and to his physicians, who immediately put him on a combination of drugs that diminished—indeed, virtually abolished—his sexual drive, so that he went from an insatiable libido to almost no libido at all. His wife told me that his behavior instantly “reverted back to loving and compassionate.” It was, she said, as if “a faulty switch was turned off”—a switch that had no middle position between on and off.
I saw Walter on several occasions in the time between his arrest and his prosecution, and he expressed fear—mostly of the reactions of his friends, colleagues, and neighbors. (“I thought they would point fingers or throw eggs at me.”) But he thought it unlikely that a court would view his conduct as criminal, in view of his neurological condition.
On this point, Walter was wrong. Fifteen months after his arrest, his case finally came to court, and he was prosecuted for downloading child pornography. The prosecutor insisted that his so-called neurological condition was of no relevance, a red herring. Walter, he argued, was a lifelong pervert, a menace to the public, and should be put away for the maximum term of twenty years.
The neurologist who had originally suggested temporal lobe surgery and had treated Walter for almost twenty years appeared in court as an expert witness, and I submitted a letter to be read in court, explaining the effects of his brain surgery. We both pointed out that Walter’s condition was a rare but well-recognized one called Klüver-Bucy syndrome, which manifests itself as insatiable eating and sexual drive, sometimes combined with irritability and distractibility, all on a purely physiological basis. (The syndrome had first been recognized in the 1880s, in lobectomized monkeys, and subsequently described in human beings.)
The all-or-none reactions that Walter had shown were characteristic of impaired central control systems; they may occur, for example, in parkinsonian patients on L-dopa.*2 Normal control systems have a middle ground and respond in a modulated fashion, but Walter’s appetitive systems were continually on “go”—there was scarcely any sense of consummation, only the drive for more and more. Once his physicians became aware of the problem, medication readily brought it under control—albeit at the cost of a sort of chemical castration.
In court, his neurologist emphasized that Walter was no longer subject to his sexual urges and pointed out that he had never actually laid hands on anyone other than his wife. (He also noted that, among more than thirty-five cases on record o
f pedophilia associated with neurological disorders, only two had been arrested and charged with criminal behavior.) In my own letter to the court, I wrote:
Mr. B. is a man of superior intelligence and…moral sensibility, who at one point was driven to act out of character under the spur of an irresistible physiological compulsion….He is strictly monogamous….There is nothing in his history or his current ideation to suggest that [he] is a pedophile. He poses no risk to children or to anyone else.
At the end of the trial, the judge agreed that Walter could not be held accountable for having Klüver-Bucy syndrome. But he was culpable, she said, for not speaking sooner about the problem to his doctors, who could have helped, and for persisting for many years in behavior that was injurious to others. She emphasized that his crime was not a victimless one.
She sentenced him to twenty-six months in prison, followed by twenty-five months of home confinement and then a further five-year period of supervision. Walter accepted his sentence with a remarkable degree of equanimity. He managed to survive prison life with relatively little trauma and made good use of his time in jail, establishing a musical band with some fellow inmates, reading voraciously, and writing long letters (he often wrote to me about the neuroscience books he was reading).
His seizures and his Klüver-Bucy syndrome remained well controlled by medication, and his wife stood by him throughout his years of prison and home confinement. Now that he is a free man, they have largely resumed their previous lives. They still go to the church where they were married many years ago, and he is active in his community.
When I saw him recently, he was clearly enjoying life, relieved that he had no more secrets to hide. He radiated an ease I had never seen in him before.
“I’m in a real good place,” he said.
*1 . Such “polymorphous perversion” (as Freud called it) may occur in a number of conditions where dopamine levels in the brain are too high. It developed in some of my postencephalitic patients “awakened” by L-dopa, and it can occur in association with Tourette’s syndrome or chronic use of amphetamines or cocaine.
*2 . This also happened with many of my Awakenings patients, who had damage to various drive systems in their brains. Thus Leonard L. was, as he later said, a “castrate” with no libido at all before he received L-dopa, but on L-dopa, he developed a ravenous sexual appetite. He suggested that the hospital make a brothel service available for L-dopa-charged patients, and when his plans were frustrated, he masturbated constantly, and often openly, for hours.
The Catastrophe
In July of 2003, my neurological colleague Orrin Devinsky and I were consulted by Spalding Gray, the actor and writer who was famous for his brilliant autobiographical monologues, an art form he had virtually invented. He and his wife, Kathie Russo, had contacted us in regard to a complex situation that had developed after Spalding suffered a head injury, two summers earlier.
In June 2001, they had been vacationing in Ireland to celebrate Spalding’s sixtieth birthday. One night while they were driving on a country road, their car was hit head-on by a veterinarian’s van. Kathie was at the wheel; Spalding was in the back seat with another passenger. He was not wearing a seat belt, and his head crashed against the back of Kathie’s head. Both were knocked unconscious. (Kathie suffered some burns and bruises but no permanent harm.) When Spalding recovered consciousness, he was lying on the ground beside their wrecked car, in great pain from a broken right hip. He was taken to the local rural hospital and then, several days later, to a larger hospital, where his hip was pinned.
His face was bruised and swollen, but the doctors focused on his hip fracture. It was not until another week went by and the swelling subsided that Kathie noticed a “dent” just above Spalding’s right eye. At this point, X-rays showed a compound fracture of the eye socket and skull, and surgery was recommended.
Spalding and Kathie returned to New York for the surgery, and MRIs showed bone fragments pressing against his right frontal lobe, though his surgeons did not see any gross damage to this area. They removed the fragments, replaced part of his skull with titanium plates, and inserted a shunt to drain away excess fluid.
He was still in some pain from his hip fracture and could no longer walk normally, even with a braced foot (his sciatic nerve had been injured in the accident). Yet, strangely enough, during these terrible months of surgery, immobility, and pain, Spalding seemed in surprisingly good spirits—indeed, his wife thought he was “incredibly well” and upbeat.
Over Labor Day weekend of 2001, five weeks after his brain surgery and still on crutches, Spalding gave two performances to huge audiences in Seattle. He was in excellent form.
Then, a week later, there was a sudden, profound change in his mental state, and Spalding fell into a deep, even psychotic, depression.
* * *
—
NOW, TWO YEARS AFTER the accident, on his first visit to us, Spalding entered the consulting room slowly, carefully lifting his braced right foot. Once he was seated, I was struck by his lack of spontaneous movement or speech, his immobility and lack of facial expression. He did not initiate any conversation, and he responded to my questions with very brief, often single-word, answers. My first thought, and Orrin’s, was that this was not simply depression, or even a reaction to the stress and the surgeries of the past two years—to my eye, it clearly looked as if Spalding had neurological problems as well.
When I encouraged him to tell me his story in his own way, he began—rather strangely, I thought—by relating how, a few months before the accident, he had had a sudden “compulsion” to sell his house in Sag Harbor, which he loved and in which he and his family had lived for five years. He and Kathie agreed that the family needed more room, so they bought a house nearby, with more bedrooms and a bigger yard. Nonetheless, Spalding had resisted selling the old house, and they were still living in it when they left for Ireland.
It was while he was in the hospital in Ireland following his hip surgery, he told me, that he finalized a deal to sell the old house. He later came to feel that he was “not himself” at the time, that “witches, ghosts, and voodoo” had “commanded” him to do it.
Even so, despite the accident and the surgeries, Spalding remained in high spirits during the summer of 2001. He felt full of new ideas for his work—the accident, even the surgeries, would be wonderful material—and he could present them in a new performance piece, entitled Life Interrupted.
I was struck, and perhaps disquieted a little, by the readiness with which Spalding was prepared to turn the horrifying events of the summer to creative use. Yet I could also understand it, because I had not hesitated, in the past, to use some of my own crises as material in my books.
Indeed, using one’s own life (and sometimes others’ lives) as material is common among artists—and Spalding was a very special sort of artist. Although he acted in television and films from time to time, his true originality was expressed in the dozen or so highly acclaimed monologues that he performed onstage. (A number of these, such as Swimming to Cambodia and Monster in a Box, were filmed.) His stagecraft was stark and simple: alone on a stage, with nothing but a desk, a glass of water, a notebook, and a microphone, he would establish an immediate rapport with the audience, spinning webs of largely autobiographical stories. In these performances, the comedies and mishaps of his life—the often absurd situations he found himself in—were raised to an extraordinary dramatic and narrative intensity. When I inquired about this, Spalding told me that he was a “born” actor—that, in a sense, his whole life was “acting.” He wondered sometimes if he did not create crises just for material—an ambiguity that worried him. Had he sold his house as “material”?
One of the special features of Spalding’s monologues was that, onstage at least, he rarely repeated himself; the stories always came out in slightly different ways, with different emphases. He was a gifted inventor of the truth, o
f whatever seemed true to him at the moment.
* * *
—
THE FAMILY WAS DUE to move out of the old house on September 11, 2001. By then, Spalding was already consumed with regret over selling it, a decision he regarded as “catastrophic.” When Kathie told him about the attack on the World Trade Center that morning, he barely registered it.
Ever since, Kathie said, Spalding had been sunk in depressive, obsessive, angry, guilty rumination about selling the house. Nothing could distract him from it. Scenes and conversations about the house replayed incessantly in his mind. All other matters seemed to him peripheral and insignificant. Previously a voracious reader and a prolific writer, he now felt unable to read or write.
Spalding had had occasional depressions, he said, for more than twenty years, and some of his physicians thought that he had a bipolar disorder. But these depressions, though severe, had yielded to talk therapy or, sometimes, to treatment with lithium. His current state, he felt, was different. It had unprecedented depth and tenacity. He had to make a supreme effort of will to do things like ride his bicycle, which he had previously done spontaneously and with pleasure. He tried to converse with others, especially his children, but found it difficult. His ten-year-old son and his sixteen-year-old stepdaughter were distressed, feeling that their father had been “transformed” and was “no longer himself.”
