Writer Siri Hustvedt, 'The Shaking Woman' After Hustvedt suffered several unexplainable seizure-like episodes that defied conventional medical diagnoses, she decided to chart her experiences — and the murky intersection between mind, brain and body — in a new book, The Shaking Woman or A History of My Nerves.

Writer Siri Hustvedt, 'The Shaking Woman'

Writer Siri Hustvedt, 'The Shaking Woman'

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Siri Hustvedt writes about her history with neurological symptoms in The New York Times blog Migraine. Marion Ettlinger hide caption

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Marion Ettlinger

Siri Hustvedt writes about her history with neurological symptoms in The New York Times blog Migraine.

Marion Ettlinger

Author Siri Hustvedt was speaking at a memorial service for her father when she started to rapidly shake. Hustvedt explains the experience to Fresh Air's Terry Gross:

"It's hard to describe how surprising it is, for one thing," says Hustvedt. "It kind of comes out of nowhere, and the first time it happened, I opened my mouth to speak and suddenly my whole body is shuddering violently. I had index cards in my hand — my arms were flapping. My legs were shuttering so hard that I thought I was going to fall over. It's a very dramatic physical event. But what is fascinating — and what has always been fascinating about this for me — is that my cognitive abilities ... continues. I don't feel cloudy or anything — it's simply that my limbs have gone out of control."

Four violent shaking episodes — along with other unexplainable physical ailments — inspired Hustvedt, the author of The Blindfold and The Enchantment of Lily Dahl, to write The Shaking Woman or A History of My Nerves. The book investigates Hustvedt's own symptoms while investigating the murky overlap between psychiatric and neurological disorders.

Hustvedt says writing The Shaking Woman allowed her to think about living with an illness that fell outside of diagnostic categories.

"There are a lot of illnesses that are either misdiagnosed or that seem to fall out of the categories of medicine," Hustvedt says. " I feel that my journey ... was a sense of mastering not the illness — not curing it — but being able to think very clearly about what had happened to me, and also saying to myself, 'This is part of you. This is not only part of your story, but it belongs to your nervous system. It may never go away.' And it became very important for me to own it. To take it into myself as part of myself and not as an alien invader."

Excerpt: 'The Shaking Woman or a History of My Nerves'

Book Cover: The Shaking Woman by Siri Hustvedt
The Shaking Woman or A History of My Nerves
By Siri Hustvedt
Hardcover, 224 pages
Henry Holt and Co.
List price: $23.00

When my father died, I was at home in Brooklyn, but only days before I had been sitting beside his bed in a nursing home in Northfield, Minnesota. Although he was weak in body, his mind remained sharp, and I remember that we talked and even laughed, though I can't recall the content of our last conversation. I can, however, clearly see the room where he lived at the end of his life. My three sisters, my mother, and I had hung pictures on the wall and bought a pale green bedspread to make the room less stark. There was a vase of flowers on the windowsill. My father had emphysema, and we knew he would not last long. My sister Liv, who lives in Minnesota, was the only daughter with him on the final day. His lung had collapsed for the second time, and the doctor understood that he would not survive another intervention. While he was still conscious, but unable to speak, my mother called her three daughters in New York City, one by one, so we could talk to him on the telephone. I distinctly remember that I paused to think about what I should say to him. I had the curious thought that I should not utter something stupid at such a moment, that I should choose my words carefully. I wanted to say something memorable — an absurd thought, because my father's memory would soon be snuffed out with the rest of him. But when my mother put the telephone to his ear, all I could do was choke out the words "I love you so much." Later, my mother told me that when he heard my voice, he smiled.

That night I dreamed that I was with him and he reached out for me, that I fell toward him for an embrace, and then, before he could put his arms around me, I woke up. My sister Liv called me the next morning to say that our father was dead. Immediately after that conversation, I stood up from the chair where I had been sitting, climbed the stairs to my study, and sat down to write his eulogy. My father had asked me to do it. Several weeks earlier, when I was sitting beside him in the nursing home, he had mentioned "three points" he wanted me to take down. He didn't say, "I want you to include them in the text you will write for my funeral." He didn't have to. It was understood. When the time came, I didn't weep. I wrote. At the funeral I delivered my speech in a strong voice, without tears.

Two and a half years later, I gave another talk in honor of my father. I was back in my hometown, in Minnesota, standing under a blue May sky on the St. Olaf College campus, just beyond the old building that housed the Norwegian Department, where my father had been a professor for almost forty years. The department had planted a memorial pine tree with a small plaque beneath it that read, LLOYD HUSTVEDT (1922–2004). While I'd been writing this second text, I'd had a strong sensation of hearing my father's voice. He wrote excellent and often very funny speeches, and as I composed I imagined that I had caught some of his humor in my sentences. I even used the phrase "Were my father here today, he might have said. . . " Confident and armed with index cards, I looked out at the fifty or so friends and colleagues of my father's who had gathered around the memorial Norway spruce, launched into my first sentence, and began to shudder violently from the neck down. My arms flapped. My knees knocked. I shook as if I were having a seizure. Weirdly, my voice wasn't affected. It didn't change at all. Astounded by what was happening to me and terrified that I would fall over, I managed to keep my balance and continue, despite the fact that the cards in my hands were flying back and forth in front of me. When the speech ended, the shaking stopped. I looked down at my legs. They had turned a deep red with a bluish cast.

My mother and sisters were startled by the mysterious bodily transformation that had taken place within me. They had seen me speak in public many times, sometimes in front of hundreds of people. Liv said she had wanted to go over and put her arms around me to hold me up. My mother said she had felt as if she were looking at an electrocution. It appeared that some unknown force had suddenly taken over my body and decided I needed a good, sustained jolting. Once before, during the summer of 1982, I'd felt as if some superior power picked me up and tossed me about as if I were a doll. In an art gallery in Paris, I suddenly felt my left arm jerk upward and slam me backward into the wall. The whole event lasted no more than a few seconds. Not long after that, I felt euphoric, filled with supernatural joy, and then came the violent migraine that lasted for almost a year, the year of Fiorinal, Inderal, cafergot, Elavil, Tofranil, and Mellaril, of a sleeping-drug cocktail I took in the doctor's office in hopes that I would wake up headache-free. No such luck. Finally, that same neurologist sent me to the hospital and put me on the antipsychotic drug Thorazine. Those eight stuporous days in the neurology ward with my old but surprisingly agile roommate, a stroke victim, who every night was strapped to her bed with a restraint sweetly known as a Posey, and who every night defied the nurses by escaping her fetters and fleeing down the corridor, those strange drugged days, punctuated by visits from young men in white coats who held up pencils for me to identify, asked me the day and the year and the name of the president, pricked me with little needles — Can you feel this? — and the rare wave through the door from the Headache Czar himself, Dr. C., a man who mostly ignored me and seemed irritated that I didn't cooperate and get well, have stayed with me as a time of the blackest of all black comedies. Nobody really knew what was wrong with me. My doctor gave it a name --vascular migraine syndrome — but why I had become a vomiting, miserable, flattened, frightened ENORMOUS headache, a Humpty Dumpty after his fall, no one could say.

My travels in the worlds of neurology, psychiatry, and psychoanalysis began well before my stint in Mount Sinai Medical Center. I have suffered from migraines since childhood and have long been curious about my own aching head, my dizziness, my divine lifting feelings, my sparklers and black holes, and my single visual hallucination of a little pink man and a pink ox on the floor of my bedroom. I had been reading about these mysteries for many years before I had my shaking fit that afternoon in Northfield. But my investigations intensified when I decided to write a novel in which I would have to impersonate a psychiatrist and psychoanalyst, a man I came to think of as my imaginary brother, Erik Davidsen. Brought up in Minnesota by parents very much like mine, he was the boy never born to the Hustvedt family. To be Erik, I threw myself into the convolutions of psychiatric diagnoses and the innumerable mental disorders that afflict human beings. I studied pharmacology and familiarized myself with the various classes of drugs. I bought a book with sample tests for the New York State psychiatric boards and practiced taking them. I read more psychoanalysis and countless memoirs of mental illness. I found myself fascinated by neuroscience, attended a monthly lecture on brain science at the New York Psychoanalytic Institute, and was invited to become a member of a discussion group devoted to a new field: neuropsychoanalysis.

In that group, neuroscientists, neurologists, psychiatrists, and psychoanalysts sought a common ground that might bring together the insights of analysis with the most recent brain research. I bought myself a rubber brain, familiarized myself with its many parts, listened intently, and read more. In fact, I read obsessively, as my husband has told me repeatedly. He has even suggested that my rapacious reading resembles an addiction. Then I signed up as a volunteer at the Payne Whitney Psychiatric Clinic and began teaching a writing class to the patients there every week. At the hospital, I found myself close to particular human beings who suffered from complex illnesses that sometimes bore little resemblance to the descriptions cataloged in the Diagnostic and Statistical Manual of Mental Disorders (usually referred to as the DSM). By the time I shook in front of my father's tree, I had been steeped in the world of the brain/mind for years. What began with curiosity about the mysteries of my own nervous system had developed into an overriding passion. Intellectual curiosity about one's own illness is certainly born of a desire for mastery. If I couldn't cure myself, perhaps I could at least begin to understand myself.

Every sickness has an alien quality, a feeling of invasion and loss of control that is evident in the language we use about it. No one says, "I am cancer" or even "I am cancerous," despite the fact that there is no intruding virus or bacteria; it's the body's own cells that have run amok. One has cancer. Neurological and psychiatric illnesses are different, however, because they often attack the very source of what one imagines is one's self. "He's an epileptic" doesn't sound strange to us. In the psychiatric clinic, the patients often say, "Well, you see, I'm bipolar" or "I'm schizophrenic." The illness and the self are fully identified in these sentences. The shaking woman felt like me and not like me at the same time. From the chin up, I was my familiar self. From the neck down, I was a shuddering stranger. What ever had happened to me, what ever name would be assigned to my affliction, my strange seizure must have had an emotional component that was somehow connected to my father. The problem was that I hadn't felt emotional. I had felt entirely calm and reasonable. Something seemed to have gone terribly wrong with me, but what exactly? I decided to go in search of the shaking woman.

Physicians have been puzzling over convulsions like mine for centuries. Many diseases can make you shudder, but it's not always easy to separate one from the other. From Hippocrates onward, making a diagnosis has meant herding a cluster of symptoms under a single name. Epilepsy is the most famous of all the shaking illnesses. Had I been a patient of the Greek physician Galen, who ministered to the emperor Marcus Aurelius and whose copious writings influenced medical history for hundreds of years, he would have diagnosed me with a convulsive illness, but he would have ruled out epilepsy. For Galen, epilepsy not only caused convulsions of the entire body, it interrupted "leading functions" — awareness and speech. Although there were popular beliefs among the Greeks that gods and ghosts could make you shake, most physicians took a naturalist view of the phenomenon, and it wasn't until the rise of Christianity that tremors and the supernatural were bound together with bewildering intimacy. Nature, God, and the devil could wrack your body, and medical experts struggled to distinguish among causes. How could you separate an act of nature from a divine intervention or a demonic possession? Saint Teresa of Avila's paroxysmal agonies and blackouts, her visions and transports were mystical flights toward God, but the girls in Salem who writhed and shook were the victims of witches. In A Modest Inquiry into the Nature of Witchcraft, John Hale describes the fits of the tormented children and then pointedly adds that their extreme sufferings were "beyond the power of any epileptic fits or natural disease to effect." If my tremulous episode had occurred during the witch madness in Salem, the consequences might have been dire. Surely I would have looked like a woman possessed. But, more important, had I been steeped in the religious beliefs of the age, as I most likely would have been, the weird sensation that some external power had entered my body to cause the shudder probably would have been enough to convince me that I had indeed been hexed.

In New York City in 2006 no sane doctor would have sent me to an exorcist, and yet confusion about diagnosis is common. The frames for viewing convulsive illness may have changed, but understanding what had happened to me would not be a simple matter. I could go to a neurologist to see if I had come down with epilepsy, although my past experience in the ward at Mount Sinai Hospital had left me wary of the doctors in charge of investigating nervous systems. I knew that in order to be diagnosed with the disease, I needed to have had at least two seizures. I believed I had had one genuine seizure before my intractable migraine. The second one looked suspicious to me. Uncontrollable shaking can occur in some seizures. My shaking was on both sides of my body — and I had talked throughout the fit. How many people talk through a seizure? Also, I had had no aura, no warning that some neurological event was in the making, as I often do for migraine, and it had come and gone with the speech about my dead father. Because of my history, I knew that a careful neurologist would do an EEG, an electroencephalogram. I'd have to sit with gooey electrodes clamped onto my scalp for quite a while, and my guess is that the doctor would find nothing. Of course, many people suffer from seizures that are not detected by standard tests, so the physician would have to do more tests. Unless I kept shaking, a diagnosis might not be forthcoming. I could float in the limbo of an unknown affliction.

I had puzzled for some time over my shaking when a possible answer announced itself. It didn't appear slowly but came all at once as an epiphany. I was sitting in my regular seat at the monthly neuroscience lecture, and I remembered a brief conversation I had had with a psychiatrist who had been sitting behind me at an earlier talk. I'd asked her where she worked and what she did, and she'd told me she was on the staff in a hospital, where she saw mostly "conversion patients." "The neurologists don't know what to do with them," she'd said, "so they send them to me." That could be it! I thought. My fit had been hysterical. This ancient word has been mostly dropped from current medical discourse and replaced by conversion disorder, but lying beneath the newer term is the old one, haunting it like a ghost.

Nearly every time the word hysteria is used now in newspapers or magazines, the writer points out that the root comes from the Greek for "womb." Its origin as a purely female problem connected to reproductive organs serves to warn readers that the word itself reflects an ancient bias against women, but its history is far more complicated than misogyny. Galen believed that hysteria was an illness that beset unmarried and widowed women who were deprived of sexual intercourse but that it wasn't madness, because it didn't necessarily involve psychological impairments. Ancient doctors were well aware that epileptic fits and hysterical fits could look alike, and that it was essential to try to distinguish between the two. As it turns out, the confusion has never disappeared. The fifteenth-century physician Antonius Guainerius believed that vapors rising from the uterus caused hysteria and that hysteria could be distinguished from epilepsy because the hysterical person would remember everything that had happened during the fit.3 The great seventeenth-century English doctor Thomas Willis dispensed with the uterus as the offending organ and located both hysteria and epilepsy in the brain. But Willis's thought didn't rule the day. There were those who believed that the two were merely different forms of the same disease. The Swiss physician Samuel Auguste David Tissot (1728–1797), who has remained part of medical history mostly for his widely published treatise on the dangers of masturbation, maintained that the two illnesses were distinct, despite the fact that there were epilepsies that originated in the uterus.4 From ancient times through the eighteenth century, hysteria was regarded as a convulsive illness that originated somewhere in the body — in the uterus or the brain or a limb — and the people suffering from it weren't considered insane. It is safe to say that if any one of the doctors above had witnessed my convulsive speech, he might have diagnosed me with hysteria. My higher functions weren't interrupted; I remembered everything about my fit; and, of course, I was a woman with a potentially vaporous or disturbed uterus.

Excerpted from The Shaking Woman or a History of My Nerves by Siri Hustvedt. Copyright 2009 by Siri Hustvedt. Published in 2009 by A Frances Coady Book Henry Holt and Company. All rights reserved. This work is protected under copyright laws and reproduction is strictly prohibited. Permission to reproduce the material in any manner or medium must be secured from the Publisher.