Epilepsy affects a substantial minority of the population, occurs in all cultures, and has been recognized since the dawn of recorded history. It was known to Hippocrates as the sacred disease, a disorder of divine inspiration.[40] And yet in its major, convulsive form (the only form recognized until the nineteenth century), it has attracted fear, hostility, and cruel discrimination. It still carries a good deal of stigma today.
Epileptic attacks — often called seizures or fits — can take a dozen or more forms. These have in common a sudden onset (sometimes without any warning, but sometimes with a characteristic prodrome or aura) and a basis in a sudden, abnormal electrical discharge in the brain. In generalized seizures, this discharge arises from both halves of the brain simultaneously. In a grand mal seizure, there is violent, convulsive movement of the muscles, biting of the tongue, and sometimes foaming at the mouth; there may also be a harsh, inhuman-sounding “epileptic cry.” Within seconds, the person having a grand mal seizure will lose consciousness and fall to the ground (epilepsy was also called “the falling sickness”). Such attacks can be terrifying to see.
In a petit mal seizure, there is only a transient loss of consciousness — the person seems to be “absent” for a few seconds, but may then continue a conversation or a chess game without realizing, or anyone else realizing, that anything unusual has happened.
In contrast to such generalized seizures, which arise from an inborn, genetic sensitivity of the brain, partial seizures arise from a particular area of damage or sensitivity in one part of the brain, an epileptic focus, which may be congenital or the result of an injury. The symptoms of partial seizures depend on the location of the focus: they may be motor (twitching of certain muscles), autonomic (nausea, a rising feeling in the stomach, etc.), sensory (abnormalities or hallucinations of sight, sound, smell, or other sensations), or psychic (sudden feelings of joy or fear without apparent cause, déjà vu or jamais vu, or sudden, often unusual, trains of thought). Partial seizure activity may be confined to the epileptic focus, or it may spread to other areas of the brain, and occasionally it leads to a generalized convulsion.
Partial or focal seizures were only recognized in the second half of the nineteenth century — a time when focal deficits of all kinds (for instance, aphasia, the loss of linguistic ability, or agnosia, the loss of ability to identify objects) were being described and attributed to damage in specific areas of the brain. This correlation of cerebral pathology with specific deficits, or “negative” symptoms, led to the understanding that there are many different centers in the brain crucial to certain functions.
But Hughlings Jackson (sometimes called the father of English neurology) paid equal attention to the “positive” symptoms of neurological disease — symptoms of overactivity, such as seizures, hallucinations, and deliria. He was a minute and patient observer, and he was the first to recognize “reminiscence” and “dreamy states” in complex seizures. We still speak of focal motor seizures which start in the hands and “march” up the arm as Jacksonian epilepsy.
Jackson was also an extraordinary theorist, who proposed that higher and higher levels had evolved in the human nervous system — and that these were hierarchically organized, with higher centers constraining lower ones. Thus, he thought, damage in the higher centers might cause “release” activity in the lower ones. For Jackson, epilepsy was a window into the organization and workings of the nervous system (as migraine was for me). “He who is faithfully analyzing many different cases of epilepsy,” Jackson wrote, “is doing far more than studying epilepsy.”
Jackson’s younger partner in the enterprise of describing and classifying seizures was William Gowers, and where Jackson’s writing was complex, convoluted, and full of reservations, Gowers’s was simple, transparent, and lucid. (Jackson never wrote a book, but Gowers wrote many, including his 1881 Epilepsy and Other Chronic Convulsive Diseases.)[41]
Gowers was especially drawn to the visual symptoms of epilepsy (he had previously written a book on ophthalmology), and he enjoyed describing simple visual seizures, as with one patient, for whom, he wrote:
The warning was always a blue star, which appeared to be opposite the left eye, and to come nearer until consciousness was lost. Another patient always saw an object, not described as light, before the left eye, whirling round and round. It seemed to come nearer and nearer, describing larger circles as it approached, until consciousness was lost.
Jen W., an articulate young woman, came to see me several years ago. She told me that when she was four, she saw “a ball of colored lights on the right side, spinning, very defined.” The ball of colored lights spun for a few seconds and was succeeded by a greyish cloud to the right, obscuring her vision to that side for two or three minutes.
She had further visions of the spinning ball, always in the same place, four or five times a year, but she assumed that this was normal, something everyone saw. When she was six or seven, the attacks took on a new aspect: the colored ball was followed by a headache on one side of her head, often accompanied by an intolerance of light and sound. She was taken to a neurologist, but an EEG and CAT scan revealed nothing, and Jen was diagnosed with migraine.
When she was thirteen or so, the attacks became longer, more frequent, and more complicated. Sometimes these frightening attacks led to complete blindness for several minutes, along with an inability to understand what people were saying. When she tried to talk, she could only utter gibberish. At this point, she was diagnosed with “complicated migraine.”
When she was fifteen, Jen had a grand mal seizure — she had a convulsion and fell to the floor, unconscious. She had many EEGs and an MRI, all of which were interpreted as normal, but finally a detailed investigation by an epilepsy specialist revealed a clear epileptic focus in the left occipital lobe and an area of abnormal cortical architecture in the same area. She was put on antiepileptic drugs, and these prevented further convulsions but did little to help with her purely visual seizures, which became increasingly frequent, sometimes occurring many times a day. She said they could be precipitated by “bright sunlight, flickering shadows, or brightly colored scenes with movement and fluorescent lights.” This extreme sensitivity to light drove her to a very restricted life, an effectively nocturnal and crepuscular existence.
Since her visual seizures did not respond to medication, a surgical approach was suggested, and when Jen was twenty, she had the abnormal area in her left occipital lobe removed. Before the surgery, while the occipitotemporal cortex was being mapped by electrical stimulation, she saw “Tinkerbell” and “cartoon figures.” This was the only time she has ever had complex visual hallucinations; her visual seizures are normally of a simple sort, with the spinning ball to the right or, occasionally, a shower of “sparklers” in this area.
The immediate effect of the surgery was very good. She was thrilled that she no longer had to stay inside, and she went back to teaching gymnastics. She found that a very small dose of antiepileptic medication could now control most of her visual seizures, although she remained sensitive to stress, missing meals, not getting enough sleep, and flickering or fluorescent lights. Her surgery left her with blindness in the lower right quadrant of her visual field, and although she can navigate pretty well in the world with this blind spot, she avoids driving. Her symptoms returned, though less severely, a few years after the surgery. She says, “Epilepsy is a major challenge in my life, but I’ve developed strategies to manage it.” She is working now on a PhD in biomedical engineering (with a focus on neuroscience), not least because of the intricate ways in which a neurological disorder has affected her own life.
When the epileptic focus lies at higher levels of the sensory cortex, in the parietal or the temporal lobes, the epileptic hallucinations may be much more complex. Valerie L., a gifted twenty-eight-year-old doctor, had what were called “migraines” from an early age — one-sided headaches preceded by twinkling blue dots. But when she was fifteen, she had a new, unprecedented experience. She said, “I had run a ten-mile race the day before … the next day I felt very strange.… I had a six-hour nap after a full night of sleep, which was most atypical for me, and then I went to temple with my family: it was a long service, a lot of standing.” She started to see halos around objects and said to her sister, “Something weird is happening.” And then a glass of water at which she was looking suddenly “multiplied itself,” so that she saw glasses of water wherever she looked, dozens of them, covering the walls and the ceiling. This went on for perhaps five seconds, “the longest five seconds of my life,” she said.
Then she lost consciousness. She came to in an ambulance, hearing the driver say, “I have a fifteen-year-old girl with a seizure,” and then realized with a start that she was the girl.
When she was sixteen, she had a second, similar attack and was put on antiepileptic medication for the first time.
A third grand mal seizure occurred a year later. Valerie saw vague black shapes in the air (“like Rorschach ink blots”), and as she continued to look, these transformed themselves into faces — her mother’s face and the faces of other relatives. The faces were motionless, flat, two-dimensional, and “like negatives,” so that light-skinned faces were seen as dark, and vice versa. They had wavering edges, “as if enveloped in flame,” in the thirty seconds before she had a convulsion and lost consciousness. After this, her doctors changed her antiepileptic medication, and she has had no more grand mal seizures since, though she continues to get visual auras or visual seizures, on average twice a month, more if she is stressed or sleep-deprived.
On one occasion, when Valerie was in college, she felt weak and not quite herself, so she went to her parents’ house for the evening. She and her mother were sitting and talking as Valerie lay in bed, when she suddenly “saw” e-mails she had received earlier in the day plastered all over her bedroom. One particular e-mail was multiplied, and one of its images was superimposed on her mother’s face, although she could see the face through it. The image of the e-mail was so clear and exact that she could read every word. Objects from her dorm room appeared everywhere she looked. It was a particular object, whether perceived or remembered, that got multiplied, never a whole scene. Her visual multiplications and reiterations are now of familiar faces for the most part, “projected” onto the walls, the ceiling, any available surface. This sort of spreading of visual perceptions in space (polyopia) and in time (palinopsia) was vividly described by Macdonald Critchley, who first used the term palinopsia (he originally called it paliopsia).
Valerie may also experience perceptual changes in relation to her seizures; indeed, her first intimation of a seizure is sometimes that her own reflection looks different — her eyes, in particular. She may feel, “This is not me,” or “It’s a close relative.” If she can go to sleep, she can avert a seizure. But if she has not been able to sleep well, other people’s faces may also look different the next morning — “strange” and distorted, especially around the eyes, though not so much that they are unrecognizable. Between attacks, she may have the opposite feeling — a hyperfamiliarity, so that everyone seems familiar to her. It is a feeling so overwhelming that sometimes she cannot resist greeting a stranger, even though, intellectually, she can say to herself, “This is just an illusion. It seems most unlikely that I have ever met this person.”
Despite her epileptic auras, Valerie lives a full and productive life, keeping up with a demanding career. She is reassured by three things: that she has not had a generalized seizure for ten years, that whatever is provoking her attacks is not progressive (she had a minor head injury when she was twelve and probably has a small temporal lobe scar from that injury), and that medication can provide adequate control.
Both Jen and Valerie were initially misdiagnosed as having “migraine” — such confusion of epilepsy and migraine is not uncommon. Gowers was at pains to differentiate them in his 1907 book, The Border-land of Epilepsy, and his lucid descriptions bring out some of the differences between the two ailments as well as some of the similarities. Both migraine and epilepsy are paroxysmal — they present themselves suddenly, go through their course, and then disappear. Both show a slow movement or “march” of symptoms and the electrical disturbance underlying them — in migraine this takes fifteen or twenty minutes; in epilepsy it is often just a matter of seconds. It is unusual for people with migraine to have complex hallucinations, whereas epilepsy commonly affects higher parts of the brain; there it may evoke very complex, multisensorial “reminiscences” or dreamlike fantasies, like one of Gowers’s patients, who saw “London in ruins, herself the sole spectator of this desolate scene.”
Laura M., a psychology major in college, at first ignored her “strange attacks” but finally consulted an epilepsy specialist, who found that she was “experiencing stereotypic episodes of déjà vu, visual and emotional flashbacks of a dream or series of dreams, usually one of five dreams … which she had in the past ten years.” These could happen several times daily and were aggravated by tiredness or by marijuana. When she started taking an antiepileptic medication, her attacks decreased in severity and frequency, but she had increasingly unacceptable side effects — in particular, a feeling of overstimulation followed by a “crash” later in the day. She took herself off the medication and reduced her use of marijuana, and now her attacks are at a tolerable level, perhaps half a dozen per month. They last only a few seconds, and although the internal feeling is overwhelming and she may “zone out” a little, others might not notice anything amiss. The only physical symptom she feels during these attacks is an impulse to roll her eyeballs back, which she resists when others are around.
When I met Laura, she said she had always had vivid, richly colored dreams that she could easily remember, and she characterized most of them as “geographic,” involving complex landscapes. She felt that the visual hallucinations or flashbacks she had in her seizures all drew on the landscapes of those dreams.
One such dreamscape was Chicago, where she lived as a teenager. Most of her seizures transported her to this dream Chicago — she has drawn maps of it, which contain actual landmarks, but in which the topography is strangely transformed. Other dreamscapes center around the hill in another city, where her university is situated. “For a few seconds,” she told me, “I flash back to a dream I have had, into the world of that dream, being in a different time and place. The places are ‘familiar,’ but don’t really exist.”
Another dreamscape, often reexperienced in seizures, is a transformed version of a hill town in Italy where she lived for a while. There is another, frightening one: “I’m with my little sister, on some sort of beach. We’re being bombed. And I lose her.… People are being killed.” Sometimes, she says, the dreamscapes blend together, a hill somehow turning into a beach. There are always strong emotional components — fear or excitement, usually — and these emotions can dominate her for fifteen minutes or so after the actual attack.
Laura has quite a lot of apprehension about these odd episodes. On one of her maps, she wrote, “This all really scares me. Please, help me any way possible. Thanks!” She says she would give a million dollars to be free of these attacks — but she also feels they are a portal to another form of consciousness, another time and place, another world, although that portal is not under her control.
In his 1881 Epilepsy, Gowers gave many examples of simple sensory seizures and noted that auditory warnings of a seizure were as common as visual ones. Some of his patients spoke of hearing “the sound of a drum,” “hissing,” “ringing,” “rustling,” and sometimes more complex auditory hallucinations, such as music. (Music can be a hallucination in seizures, but real music may also trigger seizures. In Musicophilia, I described several examples of such musicogenic epilepsy.)[42]
There may also be chewing and lip-smacking movements in a complex partial seizure, occasionally accompanied by hallucinatory tastes.[43] Olfactory hallucinations, either alone as an isolated aura or as a part of complex seizure, may occur in various forms, as David Daly described in a 1958 review paper. Many of these hallucinatory smells seem unidentifiable or indescribable (except as “pleasant” or “unpleasant”), even though a patient will have the same smell in every seizure. One of Daly’s patients said his hallucinatory smell odor was “somewhat like the smell of frying meat”; another said it was “like passing a perfume shop.” One woman would experience an odor of peaches so vivid, so real, that she was certain there must be peaches in the room.[44] Another patient had a “reminiscence” associated with hallucinatory smells which “seemed to recall odors in his mother’s kitchen when he was a child.”
In 1956, Robert Efron, a naval physician, provided an extraordinarily detailed description of his patient Thelma B., a middle-aged professional singer. Mrs. B. experienced olfactory symptoms in her seizures, and she also gave a striking description of what Hughlings Jackson called doubled consciousness:
I can be perfectly well in every way when suddenly I feel snatched away. I seem to feel as if I’m in two places at once but in neither place at all — it is a feeling of being remote. I can read, write and talk and can even sing my lyrics. I know exactly what is going on but I somehow don’t seem to be in my own skin.… When this feeling happens I know that I’m going to have a convulsion. I keep trying to stop it from happening. No matter what I do, it always comes. Everything goes ahead like a railroad schedule. At this part of my attack I feel very active. If I’m home I make beds, dust, sweep or do the dishes. My sister says that I do everything at breakneck speed — I rush around like a chicken with his head cut off. But to me it all seems to be in slow motion. I am very interested in the time, I’m always looking at my watch and asking someone the time every few minutes. That is why I know exactly how long this part of the attack lasts. It has been as short as ten minutes or may last the better part of a day; it is real hell then. Usually it lasts about twenty to thirty minutes. All this time I feel that I’m remote. It is like being outside a room and looking in through a keyhole, or as if I’m God just looking down on the world but not belonging to it.
At about the halfway point in her seizure, Mrs. B. said, she would get a “funny idea” in her head involving the anticipation of a smell:
I expect to smell something at any moment, but I don’t yet.… The first time it ever happened, I was out in the country and I was feeling funny. I was in a field picking forget-me-nots. I remember very well that I kept smelling these flowers even though I knew they had no odour. For about half an hour I kept sniffing them because I was sure they would begin to smell soon … even though I knew perfectly well at that time that forget-me-nots have no odour at all.… I know it and don’t know it at the same time.
In this second phase of her epileptic aura, Mrs. B. continued to feel more and more “remote,” until finally she knew a convulsion was near. She would lie on the floor, away from the furniture, to avoid hurting herself during the convulsion. Then, she said:
Just when I seem to be as remote as I possibly could get, I suddenly get a smell like an explosion or a crash. There is no buildup. It is all there at once. At the same moment that the smell crashes through, I’m back in the real world — I no longer feel remote. The smell is a disgusting sweet, penetrating odour like very cheap perfume.… Everything seems very quiet. I don’t know if I can hear. I am all alone with the smell.
The smell would last for a few seconds and then go away, though the silence remained for five or ten seconds, until she heard a voice off to her right calling her name. She said:
This is not like hearing a voice in a dream. It is a real voice. Every time I hear it I fall for it. It is not a man’s voice or a woman’s voice. I don’t recognize it. There is one thing that I do know and that is if I turn towards the voice I have a convulsion.
She would try hard not to turn towards the voice, but it was irresistible. Finally, she would lose consciousness and have a convulsion.
Gowers had a “favorite” seizure, one that he returned to in his writing many times, for this patient, like Thelma B., had an epileptic aura that involved many different sorts of hallucinations, unfolding in a “march” or stereotyped progression of symptoms. This showed Gowers how an epileptic excitation might move about the brain, stimulating first one part, then another, and evoking corresponding hallucinations as it did so. He first described this patient in his 1881 book Epilepsy:
The patient was an intelligent man, twenty-six years of age, and all his attacks began in the same manner. First there was a sensation [under the ribs, on the left side] “like pain with a cramp;” then, this sensation continuing, a kind of lump seemed to pass up the left side of the chest, with a “thump, thump,” and when it reached the upper part of the chest it became a “knocking,” which was heard as well as felt. The sensation rose up to the left ear, and then was like the “hissing of a railway engine,” and this seemed to “work over his head.” Then he suddenly and invariably saw before him an old woman in a brown-stuff dress, who offered him something which had the smell of Tonquin beans. The old woman then disappeared, and two great lights came before him — round lights, side by side, which got nearer and nearer with a jerking motion. When the lights appeared the hissing noise ceased, and he felt a choking sensation in the throat, and lost consciousness in the fit, which, from the description, was undoubtedly epileptic.
For most people, focal seizures always consist of the same symptoms repeated with little or no variation, but others may have a large repertoire of auras. Amy Tan, the novelist, whose epilepsy may have been caused by Lyme disease, described her hallucinations to me.
“When I realized the hallucinations were seizures,” she said, “I found them fascinating as brain quirks. I tried to notice the details of the ones that repeated.” And, being a writer, she gave all of her repeating hallucinations names. The most frequent one she calls the “Illuminated Spinning Odometer.” She describes it as
what you might see on the dash of your car at night … except the numbers begin spinning more and more rapidly, like a gas pump giving you a running tally of the cost of gas. After about twenty seconds, the numbers begin to disintegrate and the odometer itself falls apart, and gradually disappears. Because it happened so often … I made it a game to see if I could name the numbers as they were falling, or to see if I could control the speed of the odometer or make the hallucination last longer. I could not.
None of her other hallucinations moved. For a time, she would often see
the figure of a woman in long white Victorian dress in the foreground of a scene with other people in the background. It looked like a faint Victorian photograph, or a black and white version of one of those Renoir paintings of people in the park.… The figure was not looking at me, not moving.… I did not mistake it as a live scene or real people. The image had no significance to anything in my life. I did not feel any heightened emotions associated with it.
She sometimes has unpleasant odor hallucinations or physical sensations, “the ground beneath me wobbling, for instance,” she says, adding, “I have to ask others if an earthquake is happening.”
She often experiences déjà vu but finds her occasional jamais vu much more disturbing:
The first time it happened, I remember looking at a building I had passed hundreds of times and thinking I had never noticed it was that color or shape, etc. And I then looked at everything around me, and none of it looked familiar. It was so disorienting I could not move an inch further. In the same way, I would sometimes not recognize my home, but I knew I was in my home. I had learned to be patient and wait for it to pass in twenty or thirty seconds.
Amy remarks that her seizures most often occur when she is waking up or dozing off. She occasionally sees “Hollywood aliens” dangling from the ceiling. They look like “someone’s inept attempt to make an alien creature for a movie set … like a spider with a Darth Vader–like helmet head.”
She emphasizes that the images have no personal relevance, are not related to anything that happened that day, and carry no special associations or emotional significance. “They do not stay in my mind as anything to think about,” she observes. “They are more like the detritus of those parts of dreams that mean nothing, like random images arbitrarily flashed in front of me.”
Stephen L., an affable, outgoing man, first consulted me in the summer of 2007. He brought with him his “neurohistory,” as he called it — seventeen pages of single-spaced typing — adding that he had “a little graphomania.” He said his problems started after an accident thirty years before, when his car was broadsided by another, and his head slammed against the windshield. He suffered a severe concussion but seemed to recover fully after a few days. Two months later, he started to have brief attacks of déjà vu: he would suddenly feel that whatever he was experiencing, doing, thinking, or feeling he had already experienced, done, thought, or felt before. At first he was intrigued by these brief convictions of familiarity and found them pleasant (“like the breeze going past my face”), but within a few weeks he was getting them thirty or forty times a day. On one occasion, to prove that the feeling of familiarity was an illusion, he stamped his foot, threw one leg high in the air, and did a sort of Highland fling in front of a washroom mirror. He knew he had never done such a thing before, but it felt as though he were repeating something he had done many times.
His attacks became not only more frequent but more complex, the déjà vu being only the start of a “cascade” (as he put it) of other experiences, which, once started, would move forward irresistibly. The déjà vu would be followed by a sharp icy or burning pain in the chest, then by an alteration of hearing, so that sounds become louder, more resonant, seemed to reverberate all around him. He might hear a song as clearly as if it were being sung in the next room, and what he heard would always be a specific performance of the song — for example, a particular Neil Young song (“After the Gold Rush”) exactly as he had heard it during a concert at his college the year before. He might then go on to experience “a bland, pungent smell” and a taste “which corresponded with the smell.”
On one occasion Stephen dreamt he was having one of his aura cascades and woke to find that he was indeed in the midst of one. But then to the usual cascade was added a strange out-of-body experience, in which he seemed to be looking down at his body as it lay in bed, through an elevated open window. This out-of-body experience seemed real — and very frightening. Frightening, in part, because it suggested to him that more and more of his brain was being involved in his seizures, and that things were getting out of control.
Nonetheless, he kept these attacks to himself until Christmas of 1976, when he had a convulsion, a grand mal seizure; he was in bed with a girl at the time, and she described it to him. He consulted a neurologist, who confirmed that he had temporal lobe epilepsy, probably caused by injury to the right temporal lobe sustained during the car crash. He was put on antiepileptics — first one, then others — but he continued to have temporal lobe seizures almost daily and two or more grand mal seizures a month. Finally, after thirteen years of trying different antiepileptic medications, Stephen consulted another neurologist for evaluation and consideration of possible surgery.
In 1990, Stephen had surgery to remove an epileptic focus in his right temporal lobe, and he felt so much better after the surgery that he decided to wean himself off medication. Then, unfortunately, he had another car accident, after which his seizures returned. These were not responsive to medication, and he had to have much more extensive brain surgery in 1997. Nevertheless, he continues to need antiepileptic medication and to have various seizure symptoms.
Stephen feels that there has been a “metamorphosis” in his personality since the start of his seizures, that he has become “more spiritual, more creative, more artistic” — specifically, he wonders whether “the right side” of his brain (as he puts it) is being stimulated, coming to dominate him. In particular, music has assumed greater and greater importance for him. He had taken up the harmonica in his college days, and now, in his fifties, he plays “obsessively,” for hours. He often writes or draws for hours at a time, too. He feels that his personality has become “all or none” — he may be either hyperfocused or completely distracted. He has also developed a tendency to sudden rage: on one occasion, when a car cut him off, he attacked the offender physically, hurling a can at his car, then punching him. (He wonders, in retrospect, whether some seizure activity played a part in this.) Despite all his problems, Stephen L. is able to continue working in medical research, and he remains an engaging, sensitive, and creative person.
There was little that Gowers or his contemporaries could do for patients with complex or focal seizures, other than giving them sedative drugs like bromides. Many patients with epilepsy, especially temporal lobe epilepsy, were considered to be “medically intractable” until the introduction of the first specific antiepileptic drug in the 1930s — and even then the most severely affected patients could not be helped. But the 1930s also saw a much more radical, surgical approach, undertaken by Wilder Penfield, a brilliant young American neurosurgeon working in Montreal, and his colleague Herbert Jasper. In order to remove the epileptic focus in the cerebral cortex, Penfield and Jasper first had to find it by mapping the patient’s temporal lobe, and this required the patient to be fully conscious. (Local anesthesia is used when opening the skull, but the brain itself is insensitive to touch and pain.) Over a twenty-year period, the “Montreal procedure” was carried out in more than five hundred patients with temporal lobe epilepsy. These people had very diverse seizure symptoms, but forty or so of them had what Penfield termed “experiential seizures,” in which, seemingly, a fixed and vivid memory of the past would suddenly burst into the mind with hallucinatory force, causing a doubling of consciousness: a patient would feel equally that he was in the operating room in Montreal and that he was, say, riding horseback in a forest. By systematically going over the surface of the exposed temporal cortex with his electrodes, Penfield was able to find particular cortical points in each patient where stimulation caused a sudden, involuntary recall — an experiential seizure.[45] Removal of these points could prevent further such seizures, without affecting the memory itself.
Penfield described many examples of experiential seizures:
At operation it is usually quite clear that the evoked experiential response is a random reproduction of whatever composed the stream of consciousness during some interval of the patient’s past life.… It may have been a time of listening to music, a time of looking in at the door of a dance hall, a time of imagining the action of robbers from a comic strip … a time of lying in the delivery room at birth, a time of being frightened by a menacing man, a time of watching people enter the room with snow on their clothes.… It may have been a time of standing on the corner of Jacob and Washington, South Bend, Indiana.
Penfield’s notion of actual memories or experiences being reactivated has been disputed. We now know that memories are not fixed or frozen, like Proust’s jars of preserves in a larder, but are transformed, disassembled, reassembled, and recategorized with every act of recollection.[46]
And yet, some memories do, seemingly, remain vivid, minutely detailed, and relatively fixed throughout life. This is especially so with traumatic memories or memories carrying an intense emotional charge and significance. Penfield was at pains, however, to emphasize that epileptic flashbacks seem to lack any such special qualities.[47] “It would be very difficult to imagine,” he wrote, “that some of the trivial incidents and songs recalled during stimulation or epileptic discharge could have any possible emotional significance to the patient, even if one is acutely aware of this possibility.” He felt that the flashbacks consisted of “random” segments of experience, fortuitously associated with a seizure focus.
Curiously, though Penfield described such a variety of experiential hallucinations, he made no reference to what we now call “ecstatic” seizures — seizures that produce feelings of ecstasy or transcendent joy, such as Dostoevsky described. Dostoevsky’s seizures started in childhood, but they became frequent only in his forties, after his return from exile in Siberia. In his occasional grand mal attacks, he would emit (his wife wrote) “a fearful cry, a cry that had nothing human about it,” and then fall to the floor, unconscious. Many of these attacks were preceded by a remarkable mystical or ecstatic aura — but sometimes there would be only the aura, without any subsequent convulsions or lack of consciousness. The first occurred one Easter Eve, as his friend Sophia Kowalewski wrote in her Childhood Recollections (Alajouanine quotes this in his paper on Dostoevsky’s epilepsy). Dostoevsky was talking with two friends about religion when a bell started to toll midnight. Suddenly he exclaimed, “God exists, He exists!” He later went into detail about the experience:
The air was filled with a big noise and I tried to move. I felt the heaven was going down upon the earth and that it had engulfed me. I have really touched God. He came into me myself, yes God exists, I cried, and I don’t remember anything else. You all, healthy people, he said, can’t imagine the happiness which we epileptics feel during the second or so before our fit.… I don’t know if this felicity lasts for seconds, hours or months, but believe me, for all the joys that life may bring, I would not exchange this one.
He gave similar descriptions on a number of other occasions, and endowed several of the characters in his novels with seizures akin to, and sometimes identical with, his own. One such involves Prince Myshkin in The Idiot:
During these moments as rapid as lightning, the impression of the life and the consciousness were in himself ten times more intense. His spirit and his heart were illuminated by an immense sense of light; all his emotions, all his doubts, all his anxiety calmed together to be changed into a sovereign serenity made up of lighted joy, harmony and hope; then, his reason was raised up to the understanding of the final cause.
There are also descriptions of ecstatic seizures in The Devils, The Brothers Karamazov, and The Insulted and the Injured, while in The Double there are descriptions of “forced thinking” and “dreamy states” almost identical with what Hughlings Jackson was describing at much the same time in his great neurological articles.
Over and above his ecstatic auras — which always seemed to Dostoevsky revelations of ultimate truth, direct and valid knowledge of God — there were remarkable and progressive changes in his personality throughout the later parts of his life, his time of greatest creativity. Théophile Alajouanine, a French neurologist, observed that these changes were clear when one compared Dostoevsky’s early, realistic works with the great, mystical novels he wrote in later life. Alajouanine suggested that “epilepsy had created in the person of Dostoevsky a ‘double man’ … a rationalist and a mystic; each having the better of the other according to the moment … [and] more and more the mystical one seems to have prevailed.”
It was this change, seemingly progressing even between Dostoevsky’s seizures (“interictally,” in neurological jargon), that especially fascinated the American neurologist Norman Geschwind, who wrote a number of papers on the subject in the 1970s and 1980s. He noted Dostoevsky’s increasingly obsessive preoccupation with morality and proper behavior, his growing tendency to “get embroiled in petty arguments,” his lack of humor, his relative indifference to sexuality, and, despite his high moral tone and seriousness, “a readiness to become angry on slight provocation.” Geschwind spoke of all this as an “interictal personality syndrome” (it is now called “Geschwind syndrome”). Patients with it often develop an intense preoccupation with religion (Geschwind referred to this as “hyper-religiosity”). They may also develop, like Stephen L., compulsive writing or unusually intense artistic or musical passions.
Whether or not an interictal personality syndrome develops — and it does not seem to be universal or inevitable in those who have temporal lobe epilepsy — there is no doubt that those who have ecstatic seizures may be profoundly moved by them, and even actively seek to have more such seizures. In 2003, Hansen Asheim and Eylert Brodtkorb, in Norway, published a study of eleven patients with ecstatic seizures; eight of them wished to experience their seizures again, and of these, five found ways to induce them. More than any other sort of seizure, ecstatic seizures may be felt as epiphanies or revelations of a deeper reality.
Orrin Devinsky, a former student of Geschwind’s, has been a pioneer himself in the investigation of temporal lobe epilepsy and the great range of neuropsychiatric experiences which may be associated with it — autoscopy, out-of-body experiences, déjà vu and jamais vu, hyperfamiliarity, and ecstatic states during seizures, as well as personality changes between seizures. He and his colleagues have been able to perform clinical and video EEG monitoring in patients as they are having ecstatic-religious seizures, and thus to observe the precise coinciding of their “theophanies” with seizure activity in temporal lobe seizure foci (nearly always these are right-sided).[48]
Such revelations may take different forms; Devinsky has told me of one woman who, following a head injury, started to have brief episodes of déjà vu and a strange, indescribable smell. After a cluster of these complex partial seizures, she entered an exalted state in which God, with the form and voice of an angel, told her to run for Congress. Though she had never been religious or political before, she acted on God’s words at once.[49]
On occasion, ecstatic hallucinations can be dangerous, although this is very rare. Devinsky and his colleague George Lai described how one of their patients had a seizure-related vision in which “he saw Christ and heard a voice that commanded him to kill his wife and then himself. He proceeded to act upon the hallucinations,” killing his wife and then stabbing himself. This patient ceased to have seizures after the seizure focus in his right temporal lobe was removed.
Such epileptic hallucinations bear a considerable resemblance to the command hallucinations of psychosis, even though the epileptic patient may have no psychiatric history. It takes a strong (and skeptical) person to resist such hallucinations and to refuse them either credence or obedience, especially if they have a revelatory or epiphanic quality and seem to point to a special — and perhaps exalted — destiny.
As William James observed, an acute and passionate religious conviction in a single person can sway thousands of people. The life of Joan of Arc exemplified this. People have puzzled for nearly six hundred years as to how a farmer’s daughter with no formal education could have found such a sense of mission and succeeded in getting thousands of others to aid her in an attempt to drive the English out of France. The early hypotheses of divine (or diabolic) inspiration have given way to medical ones, with psychiatric diagnoses vying with neurological ones. Much evidence is available from the transcripts of her trial (and her “rehabilitation” twenty-five years later) and from the recollections of contemporaries. None of these is conclusive, but they do suggest, at least, that Joan of Arc may have had temporal lobe epilepsy with ecstatic auras.
Joan experienced visions and voices from the age of thirteen. These came in discrete episodes lasting seconds or minutes at most. She was very frightened by the first visitation, but later she derived great joy and an explicit sense of mission from her visions. The episodes were sometimes precipitated by the sounds of church bells. Joan described her first “visitations”:
I was thirteen when I had a Voice from God for my help and guidance. The first time that I heard this Voice, I was very much frightened; it was mid-day, in the summer, in my father’s garden … I heard this Voice to my right, towards the Church; rarely do I hear it without its being accompanied also by a light. This light comes from the same side as the Voice. Generally it is a great light.… When I heard it for the third time, I recognized that it was the Voice of an Angel. This voice has always guarded me well, and I have always understood it; it instructed me to be good and to go often to Church; it told me it was necessary for me to come into France … it said to me two or three times a week: “You must go into France.” … It said to me: “Go, raise the siege which is being made before the City of Orleans. Go!” … and I replied that I was but a poor girl, who knew nothing of riding or fighting.… There is never a day when I do not hear this Voice; and I have much need of it.
Many other aspects of Joan’s putative seizures, as well as evidence of her clarity, her reasonableness, and her modesty, were explored in a 1991 article by the neurologists Elizabeth Foote-Smith and Lydia Bayne. While they present a very plausible case, other neurologists disagree, and one cannot hope to see the matter definitively resolved. The evidence is soft, as it must be for all historical cases.
Ecstatic or religious or mystical seizures occur in only a small number of those who have temporal lobe epilepsy. Is this because there is something special — a preexisting disposition to religion or metaphysical belief — in these particular people? Or is it because the seizure stimulates particular parts of the brain that serve to mediate religious feeling?[50] Both, of course, could be the case. And yet quite skeptical people, indifferent to religion, not given to religious belief, may — to their own astonishment — have a religious experience during a seizure.
Kenneth Dewhurst and A. W. Beard, in a 1970 paper, provided several examples of this. One related to a bus conductor who had an ecstatic seizure while collecting fares:
He was suddenly overcome with a feeling of bliss. He felt he was literally in Heaven. He collected the fares correctly, telling his passengers at the same time how pleased he was to be in Heaven.… He remained in this state of exaltation, hearing divine and angelic voices, for two days. Afterwards he was able to recall these experiences and he continued to believe in their validity.… During the next two years, there was no change in his personality; he did not express any peculiar notions but remained religious.… Three years later, following three seizures on three successive days, he became elated again. He stated that his mind had “cleared.” … During this episode he lost his faith.
He now no longer believed in heaven and hell, in an afterlife, or in the divinity of Christ. This second conversion — to atheism — carried the same excitement and revelatory quality as the original religious conversion. (Geschwind, in a 1974 lecture subsequently published in 2009, noted that patients with temporal lobe epilepsy might have multiple religious conversions and described one of his own patients as “a girl in her twenties who is now on her fifth religion.”)
Ecstatic seizures shake one’s foundations of belief, one’s world picture, even if one has previously been wholly indifferent to any thought of the transcendent or supernatural. And the universality of fervent mystical and religious feelings — a sense of the holy — in every culture suggests that there may indeed be a biological basis for them; they may, like aesthetic feelings, be part of our human heritage. To speak of a biological basis and biological precursors of religious emotion — and even, as ecstatic seizures suggest, a very specific neural basis, in the temporal lobes and their connections — is only to speak of natural causes. It says nothing of the value, the meaning, the “function” of such emotions, or of the narratives and beliefs we may construct on their basis.