| I had my first grand mal epileptic seizure when I was nine years old. I was in church on Sunday morning. It was very warm, and the night before, I had watched a popular science fiction show called "The Outer Limits," featuring contemporary vampires. had been very spooked by it, and as I sat in church on this lovely spring day, I was sure I smelled blood. I felt very peculiar. The church was packed, and every sound, every rustle was magnified in my eardrums. I began to sense the presence of vampires. Congregating. Below me, beneath the floorboards. I imagined their eyes, dark and limpid, their faces stiff and pale, their lips, thin streaks of crimson, sucking my feet, draining my young body of blood.
Although I knew must be imagining these vampires, I couldn't shake the vision. It was time for communion, so I rose slowly from my seat, pulling away from the vampires, and knelt at the altar, stuck out my tongue, stiffened and fell back like a seventy pound slap of cement. When I came out of the seizure, I was in a strange man's arms. He looked at my parents and commented "this is epilepsy," which my parents did not, at the time, believe. All I knew, is that the vampires, the dark, had won.
The seizure is a form of death. One has no choice but to surrender to the darkness, and the chaos and hope one will come out alive on the other end. And even though this is true 99.9% of the time, there is no guarantee. There is an electrical storm in the brain. When all is calm and restored, it is a kind of miracle. It always felt to me, like coming back from the dead.
I had two or three more seizures and then was free of them for a few years, with the help of dilantin and phenobarb, which contributed to horrific acne and depression. I was taken off the medication abruptly when I was fifteen. One day I was sitting on the back steps of the school with a friend just after the lunch bell had rung and because I hadn't eaten breakfast or lunch, being fifteen, my stomach felt peculiar. Suddenly, and horribly, I felt my life threatened; I knew absolutely that I was going to have a huge seizure and that there was nothing at all I could do to stop it. It was as if someone was holding a loaded gun to my head. "Oh no, oh no, oh no" and BOOM, the ground opened up with a sickening sound and I was falling at a faster and faster rate head first, down down into the ground, which was swirling and groaning, yellow and black specks all around me, the voices of the dead, screaming, talking, whispering, I felt terror beyond fathoming, the end, the devil, hell I was a dead rocketship falling through space down down a girl falling to the middle of the earth and then ... a moment of nothingness; I saw a thread of light miles above me. I knew that to reach that light I must breathe in and SCREAM, I must scream myself UP to the light. I somehow found the strength to take a breath, and I screamed and I screamed and I screamed myself up. THUMP. There I was, on the back steps, lying in my friend's lap.
She told me later that my face had been dark purple. This means of course, that I wasn't breathing. I am sure that I almost died. And there was no white light. No kindly figures. Just horror, and chaos. But I did find a way out. The way out was to breathe in, and then to scream out. A physiological mirror, in a way, of the creative process. or many years I lived in fear of another seizure. I mean fear approaching agoraphobia. Fear of the experience, yes, but even greater was the fear of being seen. Fear of being seen convulsing perhaps incontinent, grotesque. One public seizure in my high school would mean the status of a cockroach. Most of my peers were ruthless about anybody who was different in any way, and I don't think much has changed. So every time I felt even slightly dizzy or sick I would run to the nurse's room and spend hours, just lying there, praying I wouldn't seize. I lived in a kind of fearful suspense during those years, as if in a war-zone, always anticipating the next attack.
I know this is not scientifically accepted, but I have no doubt that my experience with epilepsy has contributed to my creative work; because it helped me to understand what it is to be marginalized to be isolated, to be fearful, and to be out of control, and even, in a way, what it means to die. I understood mortality at a very young age. I know this is dangerous territory for someone who is not a neurologist, but my feeling is that we often speak of non-creative people as being "blocked" or inhibited, and if the neurological inhibitors, which are aided by anti-convulsants, are not as effective in epileptics, it may make sense that certain images and disturbing emotions and childhood experience locked away in the vault of the unconscious in most people, are less locked away in epileptics- the vault is ajar ... perhaps we have easier access to the unconscious, from wherein I believe most creative work comes.
I am, therefore, grateful for my limited experience with epilepsy. It is easy for me to say, however, now that my epilepsy is under control without medication. Those who suffer frequent seizures, understandably do NOT feel grateful. They live under siege, often on massive amounts of medication we don't fully understand, and I think we all hope that there will be soon be developments in research that make the lives of epileptics easier. But at the same time, the many epileptics in every profession and walk of life must come out of the closet and proudly announce themselves as epileptics, thus easing some of the pain and fear of the young epileptics. After all, my fear of being witnessed in a seizure was far greater than my fear of the seizure. The seizures are the vampires under the floorboards, pulling me into the dark, but it is my deep breath and my scream, my act of courage and creativity, which will pull me through to the other side of the dark, the side of the light.
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