I hadn’t intended this. But then, who ever would. This epilepsy sneaks up on me. This time, the aura lasted about a week, and it was the week i was to head to another city for business. Something, i told those close to me, was going to happen. My mind was on terrorists – a fear of flying i developed after 9/11. Yes, i know, i shouldn’t let it bother me. But to say it does not would be a lie. Terrorists, by definition, seek to terrorize, and in so many, too many ways, they succeed.
But this terror, the one I experienced, was a fear of myself. It was a fear of epilepsy of tremors that course through me, that make it impossible to live in the world at times. Of seizures that shake and quake me to the very core. Tremors and visual disturbances and an inablity to speak that leave me cold and afraid. I keep trying to speak but the words do not come out. When others speak to me, I notice that the sound and their mouth do not line up properly; that there is a slight delay as the sound travels, so I am quite sure at this moment that I am seeing the speed of sound.
Epilepsy has a way of making you believe you have super powers. This must be how shamans travelled I think. They see things others don’t. Like the way I saw the queen on television during a seizure and the onlookers curtseyed as she passed and I swear, I heard the sound of a curtsey. It goes hmmmmmm. Hmmmmmm. Other bodily movements make a sound too. Music makes shapes. I listen to songs and see silver triangles float out of the speakers. I see someone smirk and it sounds like crinkly paper and I hate that. A smile sounds like a honey bee.
I have no recollection of how I got to Dallas. I know from the expression of those around me that I had seizures on the plane. I could feel people edging away from me. Security stopped me because i was shaking; if only I could have told them that it was not that I was doing something wrong – it was that my brain was. That my own brain was playing tricks on me, like a summer storm, heavy rain fell on me and lightning ripped at the seams of the dura.
I seized. I remember little, only the prodromal warning – the strange and curious smells.
I picked up a rental car – yes, a big mistake, but i still did not know what was happening. I drove off with the trunk open, and behind me, heard a man shouting in the distance. He’s crazy, I thought. Why had he kept telling me that the forms were important. When he spoke I went “la la la la la la la” like a child. It wasn’t funny, but nerves made me laugh.
I somehow got to the hotel. checked in. Ordered food. Then blank again. My husband said he rang, but i was distant, almost dismissive. I don’t recall this. He says he rang the next morning, heard a thud, then sounds like someone choking. That was me, we discovered, on the floor, having a grand mal – the big bad. The big terrible How is it translated? It should be The Big Bad, for that is what it feels like. He sent the hotel staff up to my room where they found me, post seizure, shaking like a tiny leaf and afraid, my eyes wild. “I am fine,” I told them, and wondered why they were in my room.
Later, I went to my office in this other town. Again, I don’t recall getting there, only that i knew I had to pull over in the car, and so I did. I tried to get directions to the office, but my voice betrayed me and I couldn’t speak. Those who did speak sounded foreign. Why don’t they speak English, I kept wondering. And why couldn’t I speak? Words came out of me, but they sounded backward, like a song on a Beatles album. Maybe I was saying, “I buried Paul.” but backwards. Then I fell again, they tell me, and I shook and convulsed.
Again, I was sent on my way. To those who do not know, they assume the worst – they think drugs, alcohol. But it was none of those things. It was epilepsy. You see, I had this great idea a while back that I was miraculously cured. As an epileptic, like many with TLE, I am drawn to the trappings of religion, which is not the same thing as religion itself.
I am licensed to serve. To give communion. To take confession. I own a cassock and a cincture. I dress like a priest – or used to – every friday evening and ran the evening vespers. Sometimes, I swung the thurible and let the sharp and beautiful smoke of frankincense waft around my cassock as the sleeves open and unfold like the indigo crepe wings of a bat or the silk of a black umbrella.
At last, I entered my colleagues office. I was to make a presentation, but right, I still could not speak and my hands shook, and quite literally, my teeth chattered the way they do on a Scooby Doo cartoon. Like Shaggy. “No Scooobbbbb” I thought, “Like, lettt’s geeettt outtta herrre…” My boss gave me a moment. He is a kind man with soft eyes and a gentle manner. Thank God. I kept trying to speak, but still, the words came out in blips. I could not even ask for help.
A few minutes later, another grand mal. Elaine, who my boss works with, comes in. She says something, but I don’t understand. She says epilepsy, I think. Maybe she asked if I was having a seizure. Someone did. Or I think they did. These words saved me. At last, someone was speaking my language. I kept thinking, My God, no wonder Alice was so lost down that dark rabbit hole. It is indeed topsy turvy. Dawn in the home office, where I usually work, she is the only person who knows what is happening. Some prescience on my part – for only a week ago I told her that I have epilepsy. I added, “but it doesn’t happen, but just in case.”
Who could have predicted what they call status epilepticus. When she hears about what happened in Texas, she rings my hotel. She says she spoke to me several times, but I only remember one, and even then, just barely. She was an EMT, and like my neurologist, she is one of few who can speak the symbolic language of epilepsy. She says I declined medical treatment. That if she were there, she would have been in the back of an ambulance with me. I tell her, I am not to be trusted when I have seizures. I will do anything to fake being normal, but my eyes give me away, the way a young child grins when they’re caught stealing. You know they’re not telling the truth.
This is me: all day, I’ve been telling people I’m “fine”. Yes, “fine” I tell them. None believe me, of course. But it’s all i can say. I want to say “I’m NOT fine” but for some reason, I cannot. I am confused. I feel pressure in my neck where there is a tumor growing at c-7. To date, nobody knows what it is, only that it has wrapped itself like Kudzu in and out of my spinal vertebrae. But Dawn keeps calling. Z. says he will come and stay with me and I want to say Yes because I am afraid of being alone again. What if I hurt myself even more, I think, but this part of me fears that I will scare him.
I have no reason to believe this, but all my life I try to protect those I love, those I care about from so much illness. It is boring and dull and makes me boring and dull. Sure, maybe a medical curiousity, but who the fuck wants to be that. Wouldn’t it be better to be known for your beauty or brilliance? Who wants to be known for this. I tell myself, I have enough evidence that I am smart enough, or as Ian says, “good enough lookin’” Yet when I look in the mirror at these huge and dark eyes, I see hazel-swirl that scares even me. An intensity and depth that I don’t see on anyone else – it’s odd, but a lot of epileptics have this look in the eye. I can’t explain it. Maybe it’s a look, an expression, left over from a world that only we see. I see it in Van Gogh’s self-portraits. I want Z to come over, but I say no because i want to protect him from this. I want to protect Dawn, my husband, Elaine, Z… everyone. No one must know this dark place.
So the meeting is called off and Elaine drives me to the hotel where the front desk people, who all know me by name now, bring me endless pots of tea and sit with me while I watch, what else, The Passion of the Christ, because I have Temporal Lobe Epilepsy and religion turns me on right now. One woman, Denise, who works at the hotel, says she always wanted to be a nurse. Now she has her chance. They notice the burns on my arm. I must have seized long and hard on the carpet. My arm is red and has deep bruises and cuts. When I take off my dress, I see my left leg is black and blue from the top of the thigh to behind the knee – right where my soul lives. I still can’t talk much, but sometimes I make a bit of sense. Mostly, I am afraid. I’m not sure what. Perhaps being so out of control. I just want this to stop.
The phone rings all day. My husband worries. He changes my ticket to return home. I fear for my job, but Z. says not to worry and is kind and generous and funny. Says I did the dance of the seven veils and we both laugh. What else can we do?
The day passes, and i am in and out of consciousness. Mostly, I don’t make sense. I decide it’s better if I do not talk, but still, it’s in the eyes.
The next day, I go to leave but I have to tell the airline I have epilepsy just in case we have a repeat of the seizures. The man says he has to check. I wait for an hour and a half. I am still seizing, but these are Petit Mal. He can tell. He is worried. He rings my doctor who says I am “clear” to fly, but to watch me. And they do. They really do.
I want to believe that epileptics are the shamans, because I know that most shamans are indeed epileptic. That they are belived to be the conduit between this world and some other. I want to believe that what has happened to me these past few weeks, and especially, past few days, is some kind of mystical experience, but I don’t see it. Instead, I see a girl with dark rimmed eyes that are hazel-colored saucers.
She shakes, she trembles, her pale and freckled skin porcelein in the half-light. This girl is me. Or part of me – the epileptic part. If I could make it all stop, I would. I would take her from her hiding place and wipe the fear (yes, fear) from her eyes and tell her Everything is going to be okay.