Status Epilepticus

It steals from me. It steals the experience of epilepsy itself. It steals other memories too.It steals memories of my youth, steals the memory of my dying great grandmother. And with those memories goes something integral, something that was mine.

Of course, I've got books published by the doctors, forums published by the afflicted, and websites compiled by the earnest to replace what is stolen.

The complex balance of the electrical system in the brain may be tipped in several ways. Head trauma or lack of oxygen during birth, or brain tumors, genetic conditions... and so on. Any of those things, plus many more, could be the reason that I am epileptic.

Epilepsy has stopped me from doing some things in my life that I wanted to do. I find it difficult to believe that my life, my will, my freedom are so obviously framed by something so ephemeral.

You might wonder how something so slavering, painful, convulsive, repulsive, and physical as a seizure could be ephemeral. I can’t remember anything about any of the seizures I’ve had. In that sense, the disease is a story that others have told me about myself. Enough people tell you a consistent enough story enough times, and you believe them, even if you have no way to observe the thing that they are telling you about.

And if you are somewhat of a rational person, you make up observable datum to assuage the faith that you have in that story that they keep telling you. All this is to simply say that the reason that I have epilepsy is because they tell me a story about myself that I believe utterly without question.

But it took me years to believe it.

There is no good metaphor for what a seizure is. Yet I will provide one anyway. Imagine a giant computer central processing unit, the size of the ocean. Now imagine the energy of the sun converted with 100% efficiency (or as close as the laws of thermodynamics would allow) into electricity. Now dump the electricity through the CPU. It would be an apocalyptic wave of burning electrons. That's what a seizure is, when you bring it back to human scale.

It’s always easier to believe in something if you have seen it in other people first. And that’s how it happened to me. When someone has a seizure, everyone has a seizure. They have a way of convulsing the patterns of everything around them. As if the seizure in one tiny part of the brain triggers a larger seizure, which triggers a larger seizure, which triggers a brain wide seizure, which triggers a social seizure.

One afternoon, my dad walked in from the back yard, with a pinched look. He walked over to mom, and whispered something urgently to her. Immediately, my brother and I picked up on the panic.

He had taken the dog, Patches, an English Springer Spaniel, out in the back yard, and the dog had begun to behave oddly. They discussed, openly whether the dog had been bitten by a spider, or poisoned.


Then they made my brother and I go to our rooms, while they dealt with the dog. As an inquisitive child, I couldn't help but pester my mom to get her to tell me what had happened. She didn't understand what had happened to the dog herself, which made it easier for her to withhold information.

What had happened was that the dog went out to urinate, laid down on the ground, and then stiffened so violently that he smashed into a tree several yards away. His legs pushed straight with such force, that from a supine position, he hit a tree. Then he laid at the base of the tree, foaming at the mouth, making demonic noises in his throat and lungs, with his eyes rolled backwards, shuddering into the epileptic gaze.

A year or so later, with the dog turned into a rug with Phenobarbital, they had a thought they had a handle on the situation. Yet Patches began having a seizure while I was laying on the couch, him right beside me. I asked if I could remain downstairs. They told me a little about it. They said that he would be very disturbing to watch. He hit the far wall so hard that it shook a picture off. We turned off the television, my brother ran upstairs, and I sat there, fascinated, and observed.

On the evenings when the dog had more than one seizure, my dad would drag Patches into the garage, for sanitary reasons. He would sometimes spend some time with the dog, riding out the worst of it, and sometimes, he would simply let the dog go it alone.

Dad walked in from the garage one night, with a pinched look. He walked over to mom, and whispered something urgently to her. Her eyes widened. I saw him walk out of the house with a .22 rifle. He was crying. He had spent too much time in the garage that night.

The next morning, he put the dog to sleep. He told me, after I came home from school, that the dog had to be put to sleep because he had had 24 seizures that evening. The family sat around the table, and everyone cried, including him. I sat there, fascinated, and observed.

Why is my brain like Patches's brain?

2.

I've been convincing myself that I am not epileptic for a decade. The intervals between my seizures have been long enough that I could convince myself that I was not going to have another one. That I was not epileptic.

It is somewhat likely that I've been having seizures in my sleep since I hit puberty. That's part of how seizures work. There are three ways that seizures can develop, and one of them is during puberty. Yet my parents can’t recount me ever having one until the one I had in public. So my first was on a school bus.

I fell asleep on the bus one day shortly after I had gotten my license. I shouldn't have been on the bus, but behind the wheel, except for the fact that I was a nightmare on the highways. My concentration on the road could be compared to cats chasing marbles.

I was listening to The Cure, Disintegration, and I remember a fat black girl sitting down beside me. She had a white shirt on. I didn't say hello when she sat down.

It must have scared the shit out of her, when I began to... have my seizure. I would like to talk to that girl, since she was probably one of the few people who could tell me what the beginning of one of my seizures looks like.

I only have seizures when I am asleep. Two kids, Shabnam Islam, and James whose last name I don't remember, pulled me off the bus when the bus driver finally realized she had an emergency on her hands.

I imagine the black girl beside me must have been terrified when I began to spasm and foam at the mouth. She screamed, and pushed herself out of the seat, and into the aisle of the moving bus. The driver shouted at her to sit down. The girl stood in the middle of the aisle, and stared with fascination, as I collapsed into the floor, my backpack falling on my face, obscuring the twisted mouth, the open eyes, rolling back white, into the epileptic gaze.

Someone shouted at the driver to stop the bus. Kids pushed themselves out of their seats, as they jostled one another trying to scope the horror. The situation shifted into spectacle, into emergency. It took the driver a minute or two to find a suitable place to pull over. By the time the bus was no longer in motion, neither was my body. My face was dumb, not twisted, but lifeless.

The two teenagers pulled me off the bus like a young Adam and Eve, watching the effects of the broken world on humans.

I don't know what I remember. I've been told the story so many times, what I have in my head might be reconstruction entirely composed by what others have said.

It must have taken quite a while for the ambulance to come, and get me loaded, interview the teenagers, and drive me off to the hospital. It must have been enough time for the school to call my mother, and for her to drive across town to get to me. She road in the ambulance with me through the hospital. It only makes sense that what flashes of memories I have are a recount of the situation through her eyes, not mine.

He kept telling the paramedics that he was cold. They had to remove his shirt in order to attach electrodes to his body to get a sense of how his heart was beating, so that they'd be able to give data to the doctors once they got him to the hospital. When they removed his shirt, they had to hold him down. He punched one of the doctors just below the left eye. It was a surprising punch.

The man he hit was gentle. Some people get instantaneously angry. The paramedics said that post-seizure victims are sometimes violent like that, as if they don't understand what's going on. Or perhaps as if they had reverted to some deeper, animal understanding of their contexts.

Then they got me into the hospital. I had some of the procedures that they did to me the first time done to me later, in a second round, when they were determining the extent of my epilepsy, so I have some idea what the tests were like. Essentially, they do everything they can to make you have a seizure while you are attached to a machine, just to see what your brain waves look like.

The EEG, or Electroencephalograph, is a machine that records brain waves picked up by wires taped to the head. Electrical signals produced by brain cells are recorded as wavy lines by the machine. Brain waves during seizures look like earthquake reading. They look much like what the body does during a seizure. They look terrifying.

On the other hand, an abnormal EEG is not that dramatic. On a normal day, say while I'm at work, if I had those electrodes attached to my head, the reading would come back abnormal.

Then after the hospital had their data, I was released. I went home, and stayed home from school for a few days while we determined that I was not going to continue to have more seizures. We knew nothing.

My mother said that she knew that I was epileptic, that I would continue to have seizures, sure beyond doubt. She said it was because of the way I acted, that I had been acting increasingly erratic up until the day of the seizure. Yet she is unable to pinpoint any single action. I slowly regained memory, and consciousness, and began to function normally again afterward.

I thought that there was something different about me as well. I had been prepared for the idea that there was something wrong with my brain, because I’d been having catastrophic migraines. But I didn't think it was epilepsy. I thought it was genius. It's funny how people tangle these things up, make them more palatable for themselves, hang on to sickness.


3.

To me, the abnormal EEG reading, with it's minor waves, is more terrifying than the seizure waves. It means that the epilepsy is really a symptom of something else. That seizures are not a symptom of a disease called epilepsy, rather epilepsy is a symptom of something wrong with the way your brain is built.

Something is wrong with the way that my brain is built.

I am sane. I am generally happy, with hard streaks of moroseness. I am normal. Yet I am not sure that the moments of my incompetence are due to the human condition.

I can't remember how many seizures I have had. Which makes sense for two reasons. The first is that I am rendered unconscious by the seizure.

That's not true for all seizures, just the ones you see in movies. Unfortunately, the ones you see in movies are the ones I have. The idea you might have of a seizure, a person flopping on the floor, foaming at the mouth, biting off their tongues, and rolling their eyes in the back of their heads, is called a tonic-clonic generalized grand mal seizure. That's me all over it. Except for the fact that it only happens to me when I sleep.

The second reason is because all the time markers around the time of the seizure are typically obliterated. I am usually semi-conscious for some time afterward. I used to think that it was a couple of days until I returned to normal. Now I don't think that that was, or is the case. Perhaps my first seizure was more profound somehow than the others that followed it, and it did require a few days. Perhaps it is perfectly normal, on the other hand that I don’t sharply remember the days following my first seizure. What are the chances that I would have a catalogue of memories for any given two days in my whole life?

I believe that I am typical. I think that I don't remember anything at all for twenty minutes, to an hour after the seizure, which is what happens to most victims of a seizure of the kind that I have.

Oddly though, It seems to have erased certain, albeit minor portions of my memory. Those holes in my memory speak to me the way the Marianas Trench speaks to marine biologists. I spent time fiddling with the absence of memory the way your tongue is magnetized to a loose tooth.

No one slept with me, until my fiancé got pregnant, so after that is the only real record I have of my epilepsy. My wife has had to witness every one of the seizures that I have had since we got pregnant. What she must go through during every seizure is a metaphor for how we got pregnant.

She is laying in bed, having the dreams of youth, and beauty, freedom, and fearlessness, when she is wrenched from her sleep with the inexorable strength of death’s hands. They are my hands, flopping in the bed, my throat constricting, my tongue disappeared, my eyes white on white on white, no pupil. Every time, she is convinced that I am dying. It is a much more terrible burden for her than it ever will be for me, no matter what angst I feel about my inabilities to guarantee my ability to provide in the future.

I have no warning symptoms in the slightest. Some people say that they have a feeling like they are going to have a seizure. Like an apocalyptic curtain hung over everything. Like the feeling you might have if the sky suddenly turned an angry purple at noon. For me, I often deny to my wife that I have had a seizure, when I regain consciousness afterwards. I feel like I should know if something like that happened to me.


4.

I am surprised at how powerfully I don't want to know what's wrong with me. I have been denying that I was epileptic for a decade. I wanted it to go away. I wanted it to be larger than it is as well, something grand. What an irrational thing to think.

I didn't have my second seizure until much later.

I hated the kid I was rooming with for the first semester at Bridgewater College. During the second semester, I moved into a friend's dorm room, on the other side of the campus.

He had already taken the bottom bunk, and I liked top bunks anyway. I hadn't had a seizure in two years, and there wasn't any way for me to know that I usually had seizures in the spring and fall.

I had a dream one night that I had fallen off the bunk, in the dark, and hit the table near the bed with my hip. I didn't know that it wasn't a dream, because I was waking up from a seizure. I woke up in the morning, still on the floor where I had fallen from the top bunk.

I had bruised my hip pretty badly on the table. If I had broken it, I am sure my roommate, who was there, sleeping in his bunk below me when I fell off, wouldn't have done anything any differently.

I asked him some time later why he didn't help me, or what he'd heard. He'd said he thought I was masturbating in the top bunk, because I was shaking the bed and breathing heavily. He said he didn't hear me fall and hit the table. He said he had no idea I was having a seizure, just that he was very embarrassed.

I had told him ahead of time that I was possibly epileptic. That they had told me that I definitely was because of the abnormal EEG.

The neurologist I was going to at the time said that it was extremely probable that I had a seizure that night. It doesn’t tally up with the rest of the seizures that I had in subtle ways. The second seizure gave me plenty of room to both milk the concept of epilepsy for the uniqueness it introduced into my life, and to deny any need for me to take the medicine that my neurologist was prescribing.

Yet I began to wonder if there was something profoundly wrong with me.

My eyes hurt. All the time. Especially my right eye. When I fall asleep at night, it's usually very quickly. I suspect that I don't close my eyes, especially my right eye, when I fall asleep. Other people have confirmed that I sleep with my eyes open. Do I sleep that way because something is wrong with my brain?

I shake my feet all the time. I am hyperactive. I don't mean that I have ADHD, or had to take Ritalin when I was a child. I mean I move around too much. My wife constantly reminds me to stop moving. It worked great when my children were small, because children like to be subtly moved, all the time, it keeps them quiet.

When I was younger, in my teenage years, I may have had some kind of mental problem. I feel like I am the only sane person in a desert of insanity some times now. I wonder if either one of these situations was due to my epilepsy.

I used to cut myself. Epilepsy?

I was sitting on the bleachers, watching the girl's heat in the fourth cross country meet of my eighth grade year, talking to a friend of mine. He was laughing with me about a game show he had made up. Suddenly, the light changed. It became sinister, green, too bright, sickly. I turned to tell him I had been poisoned, but I couldn't see his head, or his left hand, they were missing, and it seemed like I could see right through him. Then, the pain in my temporal lobes gripped me much in the same way that a bald eagle swoops and buries his talons inside a wriggling fish. I vomited on his shoes. He got the coach to call my parents, and the hospital.

My dad talked his way out of the hospital scenario, and took me home. I crawled from the front door to my room, and turned off all the lights, vomiting the entire way, unable to speak except in horribly garbled words. They appeared in my mind perfectly fine, the words. Yet my mouth was tragically, terrifyingly unable to form anything. The pain tore me to shreds while I lay there. The thought of death was not strong enough to pierce through the agony. Nothing was. A pain that left one absolutely no wiser than one was before. That was my first migraine.

If epilepsy is the tipping of a bucket full of electrons across the dense spider web of the brain, what do those tidal waves of electricity that I cannot feel, and have no warning of, have anything at all to do with my debilitating migraines?

I am no hypochondriac. I believe that I am largely healthy and sane. I don't get colds. I don't get headaches. I like to run 10k races. I swam competitively for many years. I thought I was going to be a marine biologist, before my first recorded seizure prevented me from ever learning SCUBA.

Yet every single strange thing my body does, from intensely dizzy spells, to spinning in my bed after a drunken party makes me wonder, is all the shit that's wrong with me related to my epilepsy?

Until writing this, I had no clue that this disease, or state, or whatever it is, pervaded my life like a giant octopus, pushing tentacles into a jar.


The only sinister creeping issue to me, the one that matters, is that no one knows why. My neurologist did not tell me why. It wasn't that he had some compelling reason not to tell me. It wasn't a power trip, to watch me squirm under the strain of coming face to face with the void of our vast lack of knowledge. It's that he was squirming, maybe even harder than me, too.

Yet, standing in front of a chasm of no understanding, I know something. I am certain that the stories are true. I am certain that I have epilepsy, though I have less evidence about being epileptic than I have about the existence of God.

The evidence that I have ever had a seizure amounts to a picture of my brain taken during an MRI, a EEG readout with spiky graphs drawn in red, and a feeling of being dumbed. That something has been taken from me. Something that was mine, some part of my brain that has been wrested from me by the hands of an electric disaster.