Sleeping Equinoxes Part 2

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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.

There's a part of me that doesn't want to be epileptic, as much as there is a part of me that would hold on to the disease if I was offered a silver bullet cure-all.

My first seizure was on the way to school one morning, on the school bus. I may have had seizures before that point, but it's hard to tell. Neither my parents nor my brother ever saw me have one.

On the day I got my license I was sure I wasn't ready to drive. I had spent many hours practicing with my learner's permit. My dad began stomping his brake foot on the passenger seat floor before he started screaming at me to hit the goddamn breaks.

We were rolling down Hull Street in his Jeep Grand Cherokee, the one he secretly loved. It was the first vehicle he bought that he actually liked, the first one he bought after I was born a little too early. I was five when he bought it, and eleven years later, I was behind the wheel barreling into a red lighted intersection, talking about ten things at once, without a clue that the light had changed. That's when he pulled the emergency brake. Jeeps can slide sideways for quite some distance.

In a way, a few months later, I was still driving through red-lit intersections.

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. I hated to drive.

Just after I turned sixteen, I was driving back from one of my friends houses. She lived nearly forty minutes from my house. My parents asked me to be at home by eleven. I knew I was going to be late, knew I was pushing the envelope. So I was making up for it by driving a little fast. I was terrified to be driving that late at night in the first place, but the extra minutes, and the fast driving, and the risk all seemed worth five more minutes of real life with a friend.

There's a hair-pin turn on winter pock road. It's a deer trail to begin with. The turn is nearly 180 degrees. A rail road crosses the path of the road there. It is hard to navigate in the daytime.

There was a silver Sony CD player that I bought with money I earned working in a stone aggregate plant with my father. It was new, unscratched, one of the last great portable CD players. It was the first skipless CD player I had ever seen. It had taken me years to own a portable CD player. A tangled wire connected to a fake tape player plugged into the player. The wire had worked itself loose from the tape. If you arranged it just right, and pressed the wire against the tape player precisely correctly, you could get spectacular sound in the Mazda. The CD player had a preamp that required you to adjust it differently when you were in the car, and when you were listening to it with ancient headphones.

I knew the turn was there, even though the sign was covered by a tree.

I was a bit nervous. It was 10:45, and I was still 30 minutes away from the house. Just as I was thinking something about the lyrical brilliance of whomever I was listening to at the time, the tape cut off. I hit the deck. I wiggled the wire, trying to get it just right in the dim light. Something distracted me through the windshield. I looked up, and saw no road, just a wide, dark field.

I slammed the breaks with both feet. I pulled the emergency break, sliding sideways across the gravel shoulder. I saw nothing out of the windshield but bright lights, and the end of my life. I slammed hard into a railroad sign.

An airbag deploys so quickly, it's as if nothing happens at all. I was sitting there in the car, and it was filled with chemicals. I was certain the car was on fire. It seemed like I waited in the car for a long time before it deployed, and it socked me in the throat, burning my skin. But it must have deployed as soon as I hit.

I couldn't see anything out the window, smoke swirling in my eyes. It never occurred to me that I might be in danger due to flames leaping from the engine compartment into the cabin of the car. I was just furiously angry that I had set the car on fire.

There are many things worse than deep self loathing. I couldn't make the cut, I was not enough, and my good intentions meant just north of nothing. It was enough to make me indifferent to the concept of being burned alive in my dad's car, past curfew on a very dark road, far away from anything I knew.

I opened the door, and the smoke evaporated. I still had my seat belt buckled. I could feel that I had utterly ruined the car. I realized, however, that the smoke had disappeared too quickly for the car to be on fire. It had just been the chemicals from the airbag. I looked at it. It lay there limp.

Thus I found myself continuing to wait at the bus stop. I stood there, dodging flying magnolia cones kids were throwing at each other, and I cataloged the things that caused me to total my dad’s Mazda 626. I had not been paying attention. I hadn't responded fast enough. I had been distracted by being late. I had been distracted by all the things that were happening in my head so quickly. Like a thunderstorm in the brain.

It occurred to me that it wasn't going to be the last of my accidents. I wondered if there was something wrong with me. I wondered why I couldn't keep my mind on any single task.

Then I came up with all the reasons that I was not responsible for the accident. It wasn't me. I was born this way. Other people were just luckier. Surely it wasn't some kind of action on the part of safe drivers that I wasn't doing. Surely other people just didn't have the same incline. Surely I was somehow deficient. It crushed my head how every road led to the concept that there was something wrong with me.

I knew one other young man who had the same problem, who crashed cars regularly. But I was an outlier, there was no denying it. Most teenagers of sixteen years old didn't crash their cars the first night their parents allowed them to drive across town. If I acted differently, then I must have something different, deficient going on in my brain. I pounded myself with the concept that there was something wrong, broken with me, over and over again.

I got on the bus and sat in the first window seat. A pretty young girl, named Shabnam Islam sat down beside me. I didn't bother to remove the headphones, or turn off the CD player. I didn’t say hello, put my head on the seat, and drifted into dazed sleep.

It must have scared her, when I began to have my seizure. It was like nothing happened at all to me. For me, it was what scientists describe what the inside of a black hole might be like.

She says it looked like I was staring out of the window, with a grimace.
When she sat down beside me my eyes were open, and I had my head resting against the little square of glass that serves as a bus window. I started to laugh hysterically. It sounded like a bird cough, hollow, mirthless.

Then, without moving, I started slightly panting. Shabnam looked over at me, scared. She thought he's losing his mind, and there's nothing I can do to help him. I began to drool, spittle sliding down my face, over my lips, still frozen in a rictus grin.

It was at this point that I may have been jerking, head slightly banging against the window.

Shabnam didn't know what to do. She didn't know what was happening to me.
She started talking to me. I didn't respond. She motioned to another person on the bus. They both tried talking to me. After about two minutes, with the kids trying to get me to respond, I went limp in the seat. I fell over.

My eyes were dilated and my head was jerking back and forth. Shabnam decided that it would be safer for me if she laid my body in the seat on her lap. She had never seen someone have a seizure before, and she wasn't even sure that was what was happening. All she knew was that I could not speak, and that, despite the terrifying grin, that I was not going insane. She thought I might be dying.

She yelled at one of her friends on the bus to tell the bus driver that I was sick and that she was going to have to stop the bus or do something. Once the bus driver realized that there was a serious emergency, she pulled over on the side of the road.

When the paramedics got to the scene, they asked some of the kids in the back if I could walk, and they said that I was unresponsive, not talking or anything. The paramedics hoisted a gurney on to the bus, brushed past backpacks and shoes, to the seat I was in, laying on my side, legs still on the floor, head in Shabnam's lap. She got up out of the seat. They put me on the gurney, strapped me down, and rolled me off the bus. Kids stared after me, as I passed them, eyes wide open, searching as if I was undersea, looking for a lost treasure.

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. There are flashes, nothing from the bus. Everything is dark from the time that I fell asleep on the bus until sometime on the ambulance.

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 rode in the ambulance with me through the hospital.

My mother says I kept telling the paramedics that I was cold. They had to remove my shirt in order to attach electrodes to my body to get a sense of how my heart was beating. When they removed my shirt, they had to hold me down. I punched one of the doctors just below the left eye. It was a surprising punch.

The man I hit was gentle. Some people get instantaneously angry when they are punched in the face, some people lose control. The paramedics told my mother 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.

xxx

They wheeled me into the hospital. They have elaborate plans for those who are taken to the hospital because of a seizure.

There is a battery of tests that most hospitals do when admitting a patient who has never had a seizure previously. They performed several tests on my semi-conscious body when I got there.
They did blood tests. They performed several different kinds of EEG testing, and then an MRI and a CT scan.

The EEG, or Electroencephalograph, is a machine that records brain waves picked up by wires glued 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.

They pulled back my hair, and glued pads to my scalp in many different places. The glue left raised red bumps on my scalp that I discovered later.

There are several different kinds of EEG tests that can be used to determine whether I was likely to have a seizure in the future. It was clear from the first test that it was the case that my brain waves, the weak electrical charges broadcast by every neuron in the brain were outside the normal range.

Next they had me fall asleep with the electrodes still attached. No one knew that I had been asleep on the bus. The EEG told them that it was likely that I most likely would experience sleep seizures in the future. My brain waves were far more abnormal when I was asleep than when I was awake.

I am not sure whether they did the light testing when I went there the first time, or whether it was at a later date. I remember that they have a wall of light that they lay you down next to. It seems as if you are in a giant room of light. They blast lumens at you.
Then there is an ultraviolet light that they put above you, and blast different rapid patterns of light, not quite like a strobe. It seems so strong. I was not scared. I suspected it would not do anything to me.

I did not have another seizure in the hospital.

The point of some of the procedures they put the patient through it to determine whether the frequency of seizures is going to be high or not. Usually not during the first visit, but shortly after, the hospital's purpose will be to try to make you have another seizure. A great deal of information about the kind, duration, and intensity of any given persons epilepsy can't be determined in any other way.

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.

xxx

The people who are affected by seizures are those who are around the epileptic person, more than the epileptic person.

The stories I heard about the seizure where contradictory.

A friend of mine whom I had known from elementary school, named Newt, told me his story, and I wrote it down in my journal at the time.

Wednesday 5/13/1998

Of most import: I had a seizure today. I was wearing my doc sandals, a blue shirt, and blue jeans. I walked to the bus stop, got on the bus, sat down, and opened my eyes at the Jacob's Glen subdivision. Then I woke up in the ambulance.

Newt Lewis told me that he was trying to speak to me before I had the seizure, but that I was not responding very well. I do not remember that.

He told me that I was sitting beside some black girl, and that the girl freaked out. he told me that some kids told Mrs. Puckett, the bus driver to pull the bus over, and she stopped.

Everyone was freaking out, as you might expect. They called an ambulance, called my parents, and then some time on the way to the hospital, I woke up and tried to pull the oxygen mask off.

Justin said that my eyes were fully dilated, and that a lot of saliva was pouring down my face, and that my lower torso was frozen, but my upper torso was convulsing.

I am pretty sure some of that was filtered through my own interpretation. I suspect that the last part about the lower and upper torso was my own addition. I may have added that after talking to my mom about the situation.

I am not certain when he talked to me. It must have been the day that I had the seizure. I must have called him after I was in the hospital, or he called me. I don't know.

It's odd that I added the stuff about what I was wearing that day. I had bought the Doctor Martin sandals the day before. They were the last thing that my Great Grandmother gave me as a gift, before she lost too of her mental capacity to Alzheimer's to be out in public. I preserved them long after I stopped wearing them, for years.

xxx

The EEG confirmed my mother’s gut feeling, and I was sent to a Neurologist on the basis of the abnormal brainwave reading. I went to the neurologist f or several years. I don’t remember one single thing about him. I am not sure why.

I know that he prescribed the medicine I still currently take. The drugs used to control and lessen epilepsy are sometimes worse than the epilepsy itself, especially for the patient, who has little to no experience of a seizure. The drugs are the scarlet letter of the epileptic. They are the reminder of who you are, as defined by the disease you have.

My dog, Patches, was prescribed Phenobarbital in huge quantities. Phenobarbital is a barbiturate. It replaced Barbital for epileptic patients at the turn of the 20th century, freeing many from the horrible impact of the drug on their lives.

Many people walked through the doors of their mental asylums and institutions, unshackled by Phenobarbital, into jobs, homes, families, real lives.

Phenobarbital has another name, Luminal. Luminal was the brand name for the chemicals used by the Nazi party when they were warming up the holocaust machine, practicing on their own people. They force-fed or injected Luminal to their children who were retarded, sick, insufficiently Aryan, or epileptic.

Luminal worked in children very much the same way that the chemical cocktail used to put family pets to sleep does. In fact Phenobarbital is one of the chemicals that can be used in that cocktail today. Phenobarbital was what veterinarians gave to patches to suppress seizures. They gave him a much larger dose of the same drug to help him drift off into non-being as well.

They stopped using it for people who live in first world countries now. It’s considered essential in third world countries.

Anti-convulsant drugs used to suppress massive seizures have taken a few steps forward since the mid 1950s. My neurologist prescribed carbamazepine, otherwise known as Tegretol. People hate this drug. But it’s far less harmful than the alternatives.

Often, doctors must prescribe combinations of drugs, from not so harsh, upwards to harsher and harsher anti-convulsants. It is very difficult to know if the kind of drug that I am taking is working to suppress the seizures that I have because they were never frequent enough to experiment.

The drug carbamazepine works for people who have tonic/clonic generalized seizures, because it shuts down the sodium “doors” in your neurons. It causes them to be able to fire less. It takes the total electrical output and lowers it, the way you would push down an electrical tide.

One day, shortly after beginning to take this drug, I was sitting in my jeep, taking a left hand turn from the street that my high school was on, towards the pool that I practiced at daily. I saw that there was a car coming, and I stomped on the gas, taking the left. The car nearly slammed into me. It scared me badly, and I shook all the way to the pool. After that, I swore that I would never take the drug again.

I was convinced that the constant shaking and the lack of concentration, the general feeling of being dazed was directly attributable to the medicine. I hated it with every fiber of my body, not just because of the, perhaps imaginary effects.

I skipped when I could, but I had a good network of people around me, such as my mother, who ensured that I took it often. Not often enough. Carbamazepine is a drug that must be taken consistently and precisely as the neurologist describes, or the effectiveness of the drug is lessened.

As I write, I am currently under the slightly stupefying influence of the drug. I don’t notice it. Perhaps you do.

Things got better. I began to shake less. I didn’t appear to have any of the severe side effects, but it did tend to magnify the occasional debilitating migraine. And I couldn’t drink. Not that I didn’t try. I would drink two beers at friend’s houses, and realize that I was very drunk. It didn’t occur to me until later that it was because of the medicine.

But the drug is so much more than its nasty side effects. I am yoking myself. Choosing to have less brain power. Ensuring that I’m a little dumber. I get to take this giant pill twice a day, one that is made of plastic, completely indigestible: a reminder that one night, perhaps in the not too distant future, if it happens to be the spring or fall, that I might swallow my tongue and choke to death.

It was the doorway to a life slightly less healthy all around than what I had been before my seizure. And I take it now. At this instant. I put the pill in my mouth, and dry swallow the rough plastic thing. And I know that no matter how many times I see it being flushed down the toilet, that there is no end. It will always be there.

I know that now. It is very likely, though not impossible, that I will never stop being epileptic. I didn't know that then. It took me so many years to learn it. To learn to accept the situation, to be committed to stopping every potential seizure. I am committed to doing anything to stop any seizure from ever happening again. At some point, it scared me.