Sleeping Equinoxes Part 1

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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.

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 skirling 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? Glad to clear the air about that.

I can't give blood. The anticonvulsant medicine I take twice a day could hurt somebody who had not developed some resistance to it. It would cause short term memory loss, irritability, and tremors if my blood made it into another person's body.

Whatever I do, whatever drugs I take, these seizures are going to hurt me in the way change hurts.

xxx

I was sitting on the bleachers watching the girl’s heat in the fourth cross country meet of my eighth grade year, talking to Newt, his curly hair was blowing in the wind that whipped across the metal seats.

He was laughing with me about a game show he had made up. We had a lot of nervous time to burn before we had to run. He was talking like a game show host. It was beginning to annoy me. He had been talking about this game since we changed in the locker room. Our team mates had already stopped throwing him evil glances, and resumed ignoring the two of us.

Suddenly, the reflected light changed. It became sinister, green, too bright, and sickly. I turned to tell him I had been poisoned, but I couldn’t see his head or his left hand, they were missing. It seemed like I could see right through him as he asked me to form my answer into a question. Then, the pain in my temporal lobes gripped me much in the same way that a bald eagle buries talons inside a wriggling fish. I vomited on his shoes.

After a second of outright panic, when he realized I couldn't talk well, Newt 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 unable to form anything. The pain tore me to shreds while I lay there. Not even the thought of death was 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.

When the results of my first MRI came back a year or more later, it became clear that the same areas of the brain that caused me so much horrifying pain also produced the abnormal electrical pattern that originates seizures.

xxx

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 far too many drinks makes me wonder, are all the things that are wrong with me related to my epilepsy?

And the long list of things I don't do well?

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 the chasm that is our 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.

xxx

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 each 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 seizure. Used to be known as grand mal. 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 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. The reality is the it only takes a couple of hours for my brain to start functioning. The fact remains that I do not remember when I had any of my seizures. They are unmored, floating along in the sea of memory. I can only tie them down with keystrokes.

On the other hand, what are the chances that I would have a catalogue of memories for any given two days in my whole life? Slim. Frankly ruined by the drug.

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.

I can’t remember anything at all about certain people it seems. I loved my great grandmother. When I went to her grave the first time, it had a different name on it that what I remembered. I saw a picture of her about a year ago. I had never seen the woman in the photograph in my life. It hurt to know that memory has a blank burn where she should be.

xxx

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.

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.

xxx

And it plays into my worst fears, the concept that I may not be capable of overcoming the circumstances that render me essentially silent in the universe. These swirling circumstances, or the solid circumstances that are the definition of my capabilities. The fact that I may not be able to tell a good story, or create the kind of art that I love to experience. It may be the case that I am incapable of participating in the sere beauty of stories, just capable of perception. As if I had my tongue cut out, and my ears sharpened.

xxx

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. They tell me how 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. Yet they don't tell me why I'm epileptic. They don't describe the vacancy, the way that fear works, how subtle it is. They don't relate what it's like. All the books in the world can't replace one jot of what epilepsy takes from me, what it takes from my family.

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.

Ephemeral because the disease is a story that others have told me about myself. Because other people experience my epilepsy more than I do. It shakes some people profoundly. My mother, my father, my wife, and my children, when they begin to realize what it means. And they tell me.

So I don't even have my own story. Just the story that others, doctors, bystanders, and family tell me. If enough people tell you a consistent enough story enough times, 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 half-memories and coincidences to mortar the faith that you have in their story. You snap to a particular take on the truth, and magnify it. You are persuaded by the fragments of ideas on a tide of circumstance, and you build on that story as if it was a foundation. 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.

It’s always easier to believe in something if you have seen it in other people first. And that’s how it happened with me.

xxx

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, he said. He wondered whether the dog had been bitten by a spider, or poisoned. He walked back outside, and dragged the dog into the back room of the house.

My brother asked if they thought Patches was going to be all right. My mother said she didn't know. Then asked my brother and I go to our room, while they dealt with the dog.

I couldn’t help but pester my mom to get her to tell me what had happened after the chaos had died down. 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, lay down on the ground, and then stiffened so violently that he smashed into a tree several yards away. 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.

Patches was a bad case of epilepsy. The veterinarian told us he had the worst kind of epilepsy, and to prepare for the worst. In this case, the worst would be several years of epilepsy followed by putting the dog to sleep. The veterinarian suggested that it was a structural issue in the brain that might get progressively worse.

Epilepsy is not common in dogs or humans. It's slightly more common in certain pure breeds, such as Springer Spaniels. Overbreeding over the past 200 years has caused genetic weaknesses, and structural deficiencies.

The veterinarians prescribed Phenobarbital for Patches. It had a soporific effect. Patches was hardly there. He found it nearly impossible to do much. The Phenobarbital was difficult to administer to the dog as well, partly because the human party was as reluctant as the canine.

My parents must have thought they had a handle on the situation. There must have been a time when they thought the drug would stop Patches from having horrible seizures. It wasn't long.

As Patches began having more seizures, and the veterinarian began raising the dose, I began to ask more questions. They told me a little about it. My mother is a nurse, and she had read quite a bit about epilepsy. She must have known when Dad first walked in that it was no spider bite.

Mom sat me down on my cherrywood bed, the one my father had slept in when he was my age. She sat down beside me, and told me a little bit about what happened to Patches.

She told me that when a person as a seizure, it's like a thunder storm in the brain. She said that sometimes people do different things, and lose control of themselves. She said that Patches' seizures meant that he was epileptic, and that meant that he would continue to have seizures in the future. She told me that it was terrible to watch a seizure because they made the person who was having them look very ugly, and sometimes make a mess.

One evening, Patches began having a seizure while I was lying on the couch, with him right beside me. I asked if I could remain downstairs. 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. Then I helped them clean up the mess.

I walked up stairs, dazed with what I had seen. My brother was sitting on his bed, arms wrapped around his knees, crying. I walked over to his bed and told him it was okay, that Patches was still alive.

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. 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 an old .22 rifle. He was crying. He had spent too much time in the garage that night.

I woke up the next morning and dad wasn't there. I spent the whole day imagining what the dog must have looked like after he shot it. I determined I wouldn't cry.

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.

It's sheer coincidence that my dog had epilepsy and that later on, I developed epilepsy too. Epilepsy, as far as science is aware is definitely not a transmittable disease.

How is my brain like Patches’ brain?

I can steal something back, though. I can take something from epilepsy. I can pin down all the stories. I can talk to every person I know who has seen me have a seizure. I can keep a video recorder by my bed. I can look my epilepsy in the face. I can know what it means. I can know what it does to me, and what it doesn’t do. I can learn what my odds of living a full life are. I can know what the chances are that epilepsy will kill me.

I can write down different variations of other people’s stories. I can demystify everything about epilepsy. I can know my own biases about it, and be aware of others. I can teach myself. I can become the most knowledgeable person in the world about it.

I can fill the internet full of solid information for the hundred other people in this country who have the same problem. I can put letters in bottles for the thousands of people throughout history who have died who weren’t able to pen a word about what their epilepsy did to them.

I can write it all down. You can read it. I can read it. That’s the only thing I can do. I can take my anti-convulsant drugs and write short stories that are as true as possible about what it’s like to be profoundly out of control of your own body.

I can tell you what it’s like to be neither asleep, nor awake, nor dead.

Status Epilepticus is the state of the body after more than five solid minutes of tonic/clonic seizing. The body cannot survive more than that without permanent damage. It might be a dramatic name to choose for a collection of short stories about the topic. But it’s the name I chose to see every day because it’s the thing that I fear the most.

I fear that my epilepsy has utterly crippled me, and curdled my genius.

I fear that I will not be able to be a good father.

I fear that I will always forget where my car is parked.

I fear that deep down somewhere I will never be able to convince myself that I am an acceptable, functional person, even thought I know that those things, those deficiencies probably aren’t real.

There’s a good chance that I’m pretty normal.

And if they are real, they’re not the fault of epilepsy.