Tuesday, July 24, 2012

T. M. Luhrmann - Living with the Voices of Schizophrenia

This is not new research or information, but it is important that more people know about the signs and symptoms of schizophrenia and that the medications most often prescribed do not really help the person with the voices, they just drug them and make them sedate (and fat, with involuntary twitching, and the "Thorazine shuffle").

But several years ago, some people tried a different approach. Rather than fear the voices or try to drug them into silence, this new approach encouraged people to talk back to the voices, to negotiate with them, to argue with them if necessary. It works. Check it out at the Hearing Voices Network.

This article about how many people are now learning to live with the voices appears in The American Scholar.

Living With Voices

A new way to deal with disturbing voices offers hope for those with other forms of psychosis

By T. M. Luhrmann

Hans used to be overwhelmed by the voices. He heard them for hours, yelling at him, cursing him, telling him he should be dragged off into the forest and tortured and left to die. The most difficult things to grasp about the voices people with psychotic illness hear are how loud and insistent they are, and how hard it is to function in a world where no one else can hear them. It’s not like wearing an iPod. It’s like being surrounded by a gang of bullies. You feel horrible, crazy, because the voices are real to no one else, yet also strangely special, and they wrap you like a cocoon. Hans found it impossible to concentrate on everyday things. He sat in his room and hid. But then the voices went away for good.

Modern American psychiatry treats auditory hallucinations as the leading symptom of serious psychotic disorder, of which the most severe form is schizophrenia. When the German psychiatrist Emil Kraepelin first distinguished dementia praecox, as he called it, from manic-depressive disorder in 1893, back when Freud was drafting the Interpretation of Dreams, he argued that schizophrenia could be recognized by its persistent, deteriorating course. These days, schizophrenia is often imagined as the quintessential brain disease, an expression of underlying organic vulnerability perhaps exacerbated by environmental stress, but as real and as obdurate as kidney failure. The new post-psychoanalytic psychiatric science that emerged in this country in the 1980s argued that mental illnesses were physical illnesses. Many Americans and most psychiatrists took away from this science a sense that serious mental illnesses were brain dysfunctions and that the best hope for their treatment lay in the aggressive new drugs that patients often hated but that sometimes held symptoms at bay.

The book that defined the era was called The Broken Brain (1984) by Nancy Andreasen, later editor of the American Journal of Psychiatry, member of the National Academy, and recipient of the National Medal of Science. Her leading example was schizophrenia, recognized by its characteristic combination of hallucinations (usually auditory), delusions, and deterioration in work or social life.
The commonsense understanding that accompanied this wisdom was that nonpharmacological treatments for schizophrenia were useless. But recently a new grassroots movement has emerged. It argues that if patients learn to address their voices directly and appropriately, as if each voice had intention and agency, the voices will become less hostile and eventually go away. From the perspective of modern psychiatry, this assertion is radical, even dangerous. But it is being taken seriously by an increasing number of patients and psychiatrists.

Hans is a Dutch man in his 20s, kind and large and careful in his speech and movement. He has the profile typical of someone with schizophrenia. He had been an excellent student in grade school, but things started to fall apart in his teens. He began to smoke a lot of marijuana and quit school at 17 to work in a factory. One evening, he heard a woman outside his apartment screaming for help. She was shrieking that five men were raping her and that they were going to kill her. Hans was afraid. He called the cops, anonymously, and they came to search, but they couldn’t find the woman in the apartment complex. Hans saw them drive away. He could still hear her screaming, high, loud, spine-chilling screams. Hans began to think that if the men raping her knew he could hear them, they would come to kill him, too, so he ran to his car and drove. He drove for half an hour, hard, until he could no longer hear her screams. She’s dead, he thought, and he didn’t dare go back to his apartment. He slept in his car that night, then went to work the next day. He got a newspaper to find out what had happened, but no one had reported the murder. He concluded that the men who had done it wanted him, too. Then he decided that one of them was his closest friend. He took a knife and went to see his friend, intending to slit his throat. He sat there with his friend, drinking tea, waiting for the right time to kill him—but he didn’t. He left his friend’s apartment and went back to his car, where he lived for two months. He heard voices outside his head, talking about him, commenting on the way he dressed, the way he looked, what they thought he should do. Which was mostly to die.

These external commenting voices are so distinctive that if patients report only that one symptom, and if their life has gone awry, they meet criteria for the diagnosis of schizophrenia. The voices told Hans that truck drivers were in on the conspiracy, too, so he could no longer sleep in highway pullouts. He went home to his mother. Hans is a quiet man, so he didn’t tell her about the voices or the knives he carried with him, and at first she didn’t notice. Then he confessed to her that he had raped a good friend. His mother didn’t believe it. She persuaded him to invite the girl to tea, and indeed the girl said he hadn’t raped her. That relieved Hans, but not his mother.

So Hans found himself in an inpatient psychiatric hospital, where he stayed for more than a year. He was diagnosed with schizophrenia and given Clozaril, one of the new “miracle” drugs for schizophrenia—miracle for a small handful of patients, a desperate stopgap for the rest. Nothing really changed for Hans on Clozaril, neither his voices nor his delusions, but he became calm. He became so calm that he slept all day. His panicked mother argued with the doctors, telling them this was no kind of life. They told her sleeping was normal “at this stage.” Hans’s skin itched. He gained 90 pounds, and now he could not think clearly or move comfortably, a Michelin man with tubby limbs. Over the course of the year, little changed.

Then Hans joined a group of people like him who met once a week. They talked about their voices, and they were encouraged to talk back to them. They were even encouraged to negotiate with their voices. One of Hans’s voices thought he would be better off if he devoted his life to Buddhist prayer. Hans is not a Buddhist—like many Dutch, he grew up as a secular Protestant—and he did not want to follow the voice’s command. The group persuaded him to cut a deal with his voices. He told his voices that he would read a book on Buddhism every day for one hour—but no more. He would say one Buddhist prayer every day—but no more. And if he did this, he told them, they had to leave him alone.

They did, more or less. He began to feel better. His psychiatrists began to lower his Clozaril from its high of 500 mg per day down eventually to a dose of 50 mg. He lost weight. He became more alert. He moved out of the hospital. The voices didn’t disappear immediately, but they got nicer. When he was moving into an apartment by himself—and petrified by the prospect—he heard a voice say, “Buck up, we know you can do it.” By the time I met him in 2009, he hadn’t heard a voice in more than a year.

That approach to what many people take to be the most disturbing symptoms of the most debilitating mental illness is the brainchild of the Dutch psychiatrist Marius Romme and his wife, Sandra Escher. Romme is a big, handsome man in his late 70s, with a shock of white hair and a charming smile. More than 20 years ago he was working with a patient who had been struggling with her voices. She came in one day and told him that a book she had been reading had helped her because it made her feel that her voices had meaning. The writer was a man named Julian Jaynes.

The book, The Origin of Consciousness in the Breakdown of the Bicameral Mind, is one of those gangly, overwritten academic books that is undoubtedly wrong, but wrong in such an interesting way that readers, on finishing it, find that they think about the world quite differently. The book begins, “O, what a world of unseen visions and heard silences, this insubstantial country of the mind!” Jaynes was a psychology professor at Princeton, back in the days before psychologists had walled themselves off from literature, when he noticed that the gods in the Homeric epics took the place of the human mind. In the Iliad we do not see Achilles fretting over what to do, or even thinking much. Achilles is a man of action, and in general, he acts as the gods instruct him. When Agamemnon steals his mistress and Achilles seethes with anger, Athena shows up, grabs him by the hair, and holds him back. Jaynes argued that Athena popped up in this way because humans in archaic Greece attributed thought to the gods—that when the ancient kings lived in those strange beehive Mycenaean palaces, when social worlds were small and preliterate, people did not conceptualize themselves as having inner speech. Jaynes did not think that the role of the gods in the Iliad was a literary trope. He thought that people who did not refer to internal states used their brains differently and—the cognitive functions of speaking and obeying split across their unintegrated hemispheres—actually experienced some thoughts audibly. “Who then were these gods that pushed men about like robots and sang epics through their lips?” Jaynes asked. “They were voices whose speech and direction could be as distinctly heard by the Iliadic heroes as voices are heard by certain epileptic and schizophrenic patients, or just as Joan of Arc heard her voices.”

Romme wasn’t interested in whether Jaynes’s theory was right. (Most psychologists think that his brain science is quite wrong—they find it hard to take seriously the assertion that consciousness is a cultural construction—but the idea that awareness is the result of the way a language represents the mind is still startlingly compelling, and there are some scientists who defend a version of Jaynes’s model.) What Romme noticed was that attributing meaning to voices had made a difference to someone who was hearing them. By the psychiatric standards of the time, this was shocking. In the new biological psychiatry, which had begun to dominate the profession in Europe and America in the 1970s, voices were symptoms of psychotic illness in the same way that a sore throat was a symptom of flu. Sore throats didn’t “mean”: they were signs of a problem that had to be treated and resolved. So, too, voices. When a patient heard an audible voice, it was the sign of an illness that had to be treated with medication. Thus would the symptom be removed. These days, talking much with a patient about voices is often seen as encouraging that person’s belief in the false reality the voices represent. In biomedical psychiatry, mental health professionals ask whether the patient hears voices, not what the voices say. The goal is to get rid of the voices, like getting rid of a fever, and the mind-numbing, sleep-inducing antipsychotics are prescribed toward that end. Often, the medications do not work, with dosages increased in the hope that they will. Back in the ’70s, when we thought that antipsychotics would change forever the way patients lived with schizophrenia, doses were so high and side effects so visible that the way drugged patients moved under their influence was called the Thorazine shuffle.

In the mid-1980s, Romme advertised for voice-hearers on national television in the Netherlands. The local network ran a segment on Romme and his patient who had read Jaynes and asked voice hearers to send postcards. Seven hundred cards arrived. More than half were from people who seemed to experience audible voices, and many of them had never seen a psychiatric professional. They coped with their voices just fine. By now, Sandra Escher, a warm, funny woman who was working as a journalist (she eventually got a doctorate in psychology) was involved. Romme and Escher decided to hold a conference for everyone who had sent in cards. All sorts of people turned up, including people who had struggled with voices and hadn’t been able to do anything about them despite the efforts of psychiatrists and medication.

The people who were comfortable with hearing voices told the same story; their experience had a trajectory. Some voices had started out mean and difficult, and the hearers had first responded with startled fear, but once they had chosen to interact with them, the voices settled down and became more manageable, sometimes even useful. “They show me the things I do wrong,” one voice-hearer said, “and teach me how to do them otherwise. But they leave the choice to me if I really want to change it or rather leave it as it was.” That was the kernel Romme and Escher took away from the event: if people could accept their voices and create a relationship with them, they could get their voices to change.

Romme and Escher now began to talk to more voice-hearers about what they had learned, and people diagnosed with schizophrenia in the United Kingdom and the Netherlands began to organize events. In a series of workshops, Romme and Escher taught that people who heard voices should take them seriously and pay attention to what they said. In 1993 they published Accepting Voices, with techniques, case studies, and commentary by mental health professionals and patient activists (the activists sometimes call themselves survivors of psychiatric care). More detailed manuals and books followed. The workshops grew into conferences. Soon Romme and Escher were the unofficial leaders of a movement.

These days, the Hearing Voices Network is an international organization with members in many countries, including the United States, and 180 groups in Great Britain alone. It has a newsletter, a web page (intervoiceonline.org), and a society that meets annually. More than 300 people, including 121 voice-hearers, showed up at its first international conference in Maastricht in 2009, which I attended because I have always been interested in voices and visions.

Its method, to treat voices like people, is almost the inverse of the biomedical understanding of psychotic voices and a completely different perspective on how to handle them. The organization insists that hearing voices is a normal human experience, which indeed it is, although what is common (and thus “normal”) is hearing a voice as you slip into sleep, perhaps calling your name, perhaps your mother’s voice. About half of a standard subject pool (read: university undergraduates) will say that they have had some experience like that at least once. Many more will say so if the experimenter gives them examples. The Hearing Voices method takes this fact and turns it into an attitude. The problem is not the voices but the relationship to the voices, and the goal is to help voice-hearers live with them as if they were sharing a cramped apartment with crabby roommates. The voice-hearer is asked to talk directly to the voices and negotiate with them: asking what they want, offering to meet them partway if they will leave the hearer alone for a time. The hearer is told to treat the voices with respect, just the way you would treat a roommate you cannot kick out, whose behavior you really want to change.

Read the whole article.


Post a Comment