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 What causes a seizure? More importantly, what prevents it? Which cell allows the brain to be calm in one person but not in another?
If it is true that our bodies remember experiences, is it possible that activity in the brain, in relationship to seizures, is triggered by old knowledge, by traumatic experiences stored within and looking for a place to discharge.The brain, in photographs, looks a little like a nuclear bomb exploding.
Memory of childhood experiences, the unspeakable ones, stick to the body like sweat on a hot day.They remain, like a scar.
Depression, exhaustion, stress, food deprivation, abandonment and severe headaches can all cause seizures.
However, severe stress makes only some people apprehensive.The brain, like a shoulder or calf muscle, has a pre-disposition to weakness in one person but not another.We do not know why, we just know.
Without warning the body finds itself relocated to another part of the universe, a different room, memory erased.Seconds before it had been walking upright.Before there might have been a lightness in the voice, a lilt.But without warning the body is "frozen", trapped inside a world of "then and now".Two selves.The one who fell and one who didn't.Both living in fear.One afraid of the seizure.One afraid of the stigma.This is how it feels to have epilepsy.
1960
Epilepsy was a reason for denial into the United States in the early sixties, even to study.The stigma of illnesses affecting the brain is still rampant, everywhere.Global stigma.
1976
Fifteen years later a teacher falls in an afternoon classroom.Students ask concerned and intelligent questions and the teacher explains everything she knows.However, the teacher is not asked to return the following year.No reason is given, but the reason is obvious.Stigma.
1980
Four years later stress and a bad marriage are combined.The body owning the brain reacts by falling.Stress and fear push it.Face first on the concrete; shattering teeth; blacking an eye; breaking a bone.The body finds teeth in a pool of red, carries them home, up a small mountain where both selves live, mouth flooding with blood but too embarrassed to spit.The stigma of being attacked and fear of what people will think are far more overwhelming than the attack itself.
Assessments are made.How did this happen?And why after so many years?What was the triggering neuron causing this blackout, this sudden explosion?
The body makes notes.Avoid this, stay away from that, don't go there.Like a map through a dangerous forest... if you go down that road you will be attacked.The self, carrying the other self, promises to be vigilant, to watch for stressful situations like a child watches for danger.It raises a family, keeps journals and tries to describe what life with a seizure is like.
The body gathers new memories.Memories of gardens in springtime, lilac branches resting on old fences, tulips and ivy competing for space, memories of trauma colliding with seizures, colliding with spring.
Erase from the mind whatever happened yesterday.
The two selves learn to cope with things simultaneously, to believe the unbelievable, to keep memories inside an invisible backpack.
Living with seizures is living life on the edge most of the time.The body owning the brain has been attacked.The brain has been attacked.
Signals crisscross and brain waves tangle like shoelaces on windy clotheslines.They collide with clothespins and work shirts and things made from lace.
The brain is a clothesline, and seizures make messages tangle.Epilepsy is something like that.
Stress can do to a person with epilepsy, what smoke can do to a person with lung cancer.The brain becomes unable to breathe.Paralyzed, the mind travels elsewhere, anywhere, blankness.The brain has learned disappearing skills.The attack takes over.Living with seizures is living life with the incomprehensible, - an unseen fist can reach from the sky and push the body to the ground.Stress can do it also.
Something happens.Something triggers a cell, a neuron, and the entire electrical system in the brain instantly rewires itself.Within seconds.The interruption can be so brief, even the body owning the brain is unaware of it.Sensitive EEG machines might capture something.
Seventeen years later.
It can be as significant as, exhausted, during a lunch break, becoming dizzy while crossing a busy street, losing balance and being thrown into the air by a speeding vehicle, by the wind, by the attack.No questions are involved.Something happened.What, how, and when are all questions.But that something happened, is not a question.The body owning the brain is not asked back to its job, ironing shirts.Stigma?
Epilepsy can be blank stares in moments of fear, but it can also be broken bones or a disfigured face found at an intersection, unconscious, parts that were once on the left, now on the right.A medical worker shouting, "She had a seizure!She had a seizure!" as if someone were about to win an award.
Experts are called and the face reassembled.Unanswered questions.Darkness without light.All memory erased.Attack, external and internal.The body owning the face tries to vanish.To melt.Who did this?The self who became dizzy and fell.The self who became exhausted.The self struck by a speeding car.The self whose neurons flew in all directions like birds at the sound of gunshot.There are few answers for the self with epilepsy.
Stress happens.Seizures happen.Cars run wild on busy streets.And at moments of life threatening stress, the brain forfeits memory.It uses all of its power to simply keep living.Memory isn't paramount.Breathing is.
One part of the self cares for the other.Mirrors removed.Herbs and cremes purchased.It walks the mind, alone, at night.It researches the brain.The most important things have yet to be written.
Every muscle moved has an anatomy.Every behavior has an anatomy.Each muscle has a memory and it holds onto its past like a bloated prison guard with key rings.Moments from the past once filled with terror, linger.
The self seeks knowledge and calm in a world that is upright.Seeks a world without violence.Without stigma.
Epilepsy is clothed in social stigma and much inaccurate, outdated information.There is no known cause and no known cure.It's a little like AIDS, just not as fashionable.If a person with epilepsy were to wear a little ribbon, it would probably depict a clothesline, shoelaces going in all directions and the words "When we finally get back on our feet, someone is going to have hell to pay."
Excerpt from "GREEN BEANS AND THE BLUE ANGEL" a manuscript in progress, with thanks to Dr.Orrin Devinsky, who taught me everything there is to know so far about epilepsy.
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