Demons, Depression, Orgasms, and Epilepsy
There is still an aura of strangeness and sacredness around the ancient disease
It was the morning of my 8th birthday, a Saturday in June. I woke up excited for the day, as any eight-year-old would.
I ate my breakfast (Coco Puffs, I think) and started getting dressed. I suddenly felt strange. My head felt foggy. My body felt far away. It was like I was perceiving the world through a tunnel. I remember putting on one of my socks, and that was it.
The next thing I remember was being carried by my mother across a parking lot into urgent care.
The next thing I remember after that was waking up pinned beneath a nurse while another nurse gave me a lumbar puncture. I cried and screamed at the sharp pain as the needle made its way into my lower spine to extract a sample of my cerebrospinal fluid.
I woke up again in a CAT scanner, the technician telling me to keep still. I heard my mother in the other room talking to the doctor, telling him how she found me unconscious and unresponsive, damp with sweat and urine, my eyes open and unblinking, staring blankly at nothing, my breathing sharp and shallow.
I was transferred to a hospital in the next town over. I woke again in a hospital room with an IV and a breathing tube. My mother was there, and so was my father. He had driven an hour from the city. He and my mother separated when I was three. I had never seen him hug her until that day.
There were balloons in the corner by the window.
Over the next couple of days, they ran several tests on me, including an EKG, EEG, and MRI. They found nothing. No tumor or trauma or anything else that would explain why I suddenly lost consciousness. I was discharged, sent home, and spent the rest of my summer as any eight-year-old would. By the time I started 3rd grade in the fall, I had forgotten all about it.
A few months later, as I was getting ready for school, I noticed a small, flashing pinwheel of light in my peripheral vision in my left eye. I actually swatted at it, thinking it was a bug or something, before realizing it was inside my eye.
I went into my mother's room where she was ironing. I described as best I could what was happening to me. She had me lay down on her bed. I woke in my own bed with her standing over me, saying my name, trying to bring me back from wherever I had been. My stomach lurched and I vomited into the wastebasket by my bed.
Since I never went into convulsions (until I was older), my pediatrician diagnosed me with migraines and I was given medication and a special diet. But the attacks continued. They would come in waves; I would have maybe one episode a month for several months, then none for six months or even a year, although I never kept a calendar.
They always happened late at night or early in the morning, which I suppose I am thankful for; I never had one in public, always in the safety of my own home. I was often awakened by my aura, the flashing lights, which became vivid and frightening visual and aural hallucinations. Faces flashed and floated before me, stared at me, spoke to me; they all seemed familiar, though I could never place them, or understand what they said.
After about one-to-five minutes of this terror, I would lose consciousness. I would wake about fifteen minutes later, my head feeling like it was underwater, my stomach like it was floating in a void, my body like it was cased in cement. I was catatonic for an hour afterward and would spend the rest of the day in bed, exhausted.
It wasn’t until I was eleven that I had my first full-blown convulsive seizure. It started when I was in the shower. I called for my mother who called an ambulance this time. I spent the night in the hospital. After three years I was formally diagnosed with epilepsy.
Two thousand years ago, a man brought his son to a miracle-working rabbi named Jesus of Nazareth.
“Teacher,” the man said, kneeling before him, “I brought my son to you, for he has a spirit that makes him mute. And whenever it seizes him, it throws him down, and he foams and grinds his teeth and becomes rigid…And it has often cast him into fire and into water, to destroy him.”
As if on cue, “the spirit” convulsed the boy and threw him on the ground. “How long has he been like this?” Jesus asked. “Since childhood,” the father replied, probably having been to every rabbi and miracle-worker in Israel. Jesus then ordered the spirit out of the boy which violently convulsed him again, before leaving with a loud cry; “and the boy was like a corpse, so that most of them said, ‘He is dead.’ But Jesus took him by the hand and lifted him up, and he arose.”
The word epilepsy comes from the Greek “to take hold of”, “to seize upon”, or “to attack”. The epileptic was seized by some outside force or influence — a demon, sometimes a god — and ceased to be themselves. They were a vessel for the supernatural, like the young boy that was brought to Jesus.
This was the common view of epilepsy not just in the ancient world, but even up to the 18th century. And although we know a bit more now, there is still a stigma around epilepsy and epileptics; there is still something sinister and ominous about it. Seeing someone in the throes of a grand mal seizure — flailing and convulsing, groaning, unable to control their own body and mind — it is easy to forget that it’s all just the result of nerve cells in the brain misfiring.
Yet even as far back as 400 B.C., the Greek physician and Father of Medicine, Hippocrates, wrote a tract debunking the supernatural and superstitious conception of epilepsy, which was then called “the sacred disease”, in favor of a more rational, humanistic medical explanation:
“And the disease called the Sacred arises from causes as the others, namely, those things which enter and quit the body, such as cold, the sun, and the winds, which are ever changing and are never at rest. And these things are divine, so that there is no necessity for making a distinction, and holding this disease to be more divine than the others, but all are divine, and all human. And each has its own peculiar nature and power, and none is of an ambiguous nature, or irremediable.” — Hippocrates “On The Sacred Disease”
There are two main kinds of seizures: focal, which are localized to one part of the brain; and generalized, in which nerve cells on both sides of the brain misfire. The most familiar and severe kind of epileptic seizure is the generalized tonic clonic — formerly called grand mal, from the French, meaning “great illness” — seizure. These occur not only in those with chronic epilepsy, but can also occur in anyone that has experienced any sort of head trauma or an excessive amount of time without oxygen.
The nerve cells in the brain, which typically fire one at a time, fire in hypersynchrony. Imagine people walking down a street, each at their own pace, their steps rising and falling at different times. Now imagine a regiment of soldiers marching, their steps rising and falling in time with one another; this is hypersynchrony; this is how the nerve cells fire during a generalized seizure.
During the “tonic” phase, the person loses consciousness and strong spasms force air from the lungs, causing a loud moan or even a scream. Then comes the “clonic” phase — rapid muscle contractions in the arms, legs, and torso for one to two minutes.
Many epileptics also experience an aura before the onset of a seizure, such as the bright flashing lights and…hallucination isn’t quite the correct word — someone hallucinating doesn’t know they are hallucinating, but I was very aware that what I was seeing and hearing wasn’t real, which actually made it all the more frightening; it felt so real, but wasn’t— that I experienced.
The 19th Century Russian novelist Fyodor Dostoevsky suffered from epilepsy all his adult life (he reportedly had a full-bkiwb grand mal on his wedding night). Many of his characters in his novels suffer from the disease — including Smerdyakov in The Brothers Karamazov, who fakes a seizure as an alibi in order to murder his father and frame his brother for it — and Dostoevsky describes in incredible detail his own experiences through them, as in this passage from The Idiot:
There was a moment or two in his epileptic condition almost before the fit itself…when suddenly amid the sadness, spiritual darkness and depression, his brain seemed to catch fire at brief moments…His sensation of being alive and his awareness increased tenfold at those moments which flashed by like lightning. His mind and heart were flooded by a dazzling light. All his agitation, doubts and worries, seemed composed in a twinkling, culminating in a great calm, full of understanding…but these moments, these glimmerings were still but a premonition of that final second with which the seizure itself began. That second was, of course, unbearable.’
Each aura is different for each person; some are innocuous and some are truly bizarre. Some people experience a persistent twitch in one part of their body. Some experience deja vu, a recurring memory, or a general feeling of anxiety or ecstasy. Some smell a particular odor. Some hear music or voices. Some lucky people even have orgasms, though for some equally unlucky people orgasms may actually induce seizures.
Common triggers of seizures include alcohol, stress, lack of sleep, and menstruation. But they can also be triggered by a myriad of random and seemingly innocuous things. Flashing lights, for instance, can not only be an aura but a trigger as well. For some a trigger may be a specific smell or sound. When I first began having seizures they occurred usually in the morning after I had eaten breakfast. I would put my bowl in the sink and almost immediately see the bright flashing pinwheel of light. Later, there was a period of time when they occurred at night while I was in the shower. And other times I’d be awakened late at night or early in the morning by my aura.
John Charles Francis, better (but not much) known as Prince John — the fifth and youngest child of King George V and Mary — was diagnosed with epilepsy when he was four years old. During his parents’ coronation in 1911, the six year-old prince was absent. The reason given was that the public ceremony would have adverse effects on the young prince’s health; although this may have been partly true, it’s likely the royal family were worried the prince would have an episode in public view. His conditioned worsened. His seizures became more frequent and severe. At the age of ten we was sent to Wood Farm, where he died three years later after a seizure, “hidden from view”.
Fortunately, most epileptics are not members of the Royal Family. But there is, even to this day, a stigma surrounding people with epilepsy, as Elaine Wyllie, M.D. and Becky Tilahun make clear in a 2019 US News article:
Epilepsy-related stigma stems from misunderstanding about the medical facts. Some people are unaware that epilepsy is a well-defined medical condition with symptoms that can be scientifically explained and, in most cases, successfully treated. In the absence of this understanding, myths and stigma may arise. Stigma tends to be highest for people with frequent seizures, but just carrying the diagnosis can be stigmatizing even if one’s seizures are well-controlled.
I was given medication to manage my seizures. I was also fortunate that my seizures always occurred, without exception, late at night or early in the morning, in the safety of my own home and, often, my own bed. Most people with epilepsy are not so fortunate. Even now, after sixteen years of being seizure free, my biggest fear is not only that I will have them again, but that I will have one in public. If a person has a heart attack in public, for instance, they are worried over and sympathized with. A person who has a seizure in public, however, is usually regarded with apprehension, suspicion, even sometimes fear.
I’ve been seizure-free for the past sixteen years. I had my last seizure about two months before my eighteenth birthday, nearly a decade since that morning when my mother found me unconscious. The root cause was never definitively discovered. In total I probably had maybe only twenty tonic clonic seizures in that decade. But I also suffered from repeated partial, or focal seizures — during which time I was fully conscious and aware of my surroundings, yet everything felt far away and unreal, as if it were a dream about to dissolve — as well as frequent migraines when I was in high school. I wasn’t able to get my driver’s license when most of my peers did, and to this day I still don’t drive.
I’ve also struggled most of my life with depression, which is a common, but under-recognized, effect of epilepsy. Firstly, the seizures themselves may effect the part of the brain that modifies mood. Secondly, seizure medications may also adversely effect mood. Lastly, and most pointedly, those who suffer from severe epilepsy may experience depression due to feelings of shame, helplessness, and alienation.
Epilepsy is still very much a hidden disease. What makes it so upsetting — both for those that suffer from it and for those that observe it — is the suddenness and randomness with which it operates. A person with epilepsy may be going about their day like anyone else — buying groceries, working out at the gym, having sex — when, suddenly, they are seized, their body and mind taken away. They become something other than themselves for those two minutes. They wake slowly, not knowing what happened, where they are, or even who they are.
If you see someone having a seizure, follow these first aid guidelines by the CDC:
- Ease the person to the floor.
- Turn the person gently onto one side. This will help the person breathe.
- Clear the area around the person of anything hard or sharp. This can prevent injury.
- Put something soft and flat, like a folded jacket, under his or her head.
- Remove eyeglasses.
- Loosen ties or anything around the neck that may make it hard to breathe.
- Time the seizure. Call 911 if the seizure lasts longer than 5 minutes.
When they come back to themselves again, be kind to them. Take them by the hand and help them up.
