Burnt Light

Many years ago I was trained in Model Mugging, a powerful form of self-defense based on the physical advantages of female rather than male bodies.  We practiced the moves over and over until they were ingrained, learned at the level of nerve and muscle.  Our teachers wanted our bodies to go on automatic if the need arose.  And that does seem to be how it works.  We were told a story about a woman who was attacked at a subway station, eight years after she graduated from the training.  She didn't even remember the name of the course, but her body flew into action and carried out its moves without her.  She has no recollection of what she did to her attacker. She had to deduce it from the hospital reports of the damage done.

I can't tell you what my body does when it has a grand mal, tonic-clonic seizure.  My nervous system decides it's had enough and throws a switch and I go down.  There's a lightening storm that I never see.  I wake up in the landscape of its aftermath, in a field of debris, and trace its path by the damage done.  I wake up incoherent, stumbling after words, language shredded and scattered, my tongue bloody, my pants drenched in urine.  Burnt light, is what I say this time.  Over and over, whispering to myself.  Burnt light.

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I wake up in the middle of a sentence, half an hour into a conversation, the first part of which is hidden from me.  This time it's my niece telling me "She died."  She died?!  "When," I ask. "Of what?  Was I there?"  Because it seems I was asking for my mother.  I often wake up asking for someone who is missing, so I must be aware, somewhere inside me, of a gap.  Or else I was just with her.  I ask if I still live on California Street, trying to figure out which chapter of my life I'm in right now.  It could be any one of a number of years.

The inside of my head feels scorched, the way our eyes get from staring at the sun.  It's always like this: a light too bright to be tolerated has shone into every cell of my brain and I can't see, have spots of un-thought floating across my mind.  Dragging the words I want to say, one at a time, out of the storage bins of words is exhausting, as if each one weighs a ton. 

Then there are the muscles.  In those few seconds of wildness, they have contracted hard enough to crack stone.  They have clenched beyond anything I could do with my waking will.  Every strand hurts.  My sacrum is jammed, my right hip excruciating, my left knee and ankle pulled awry. My arms, my back, my thighs, my face--it's as if each separate part of me climbed its own mountain range and is aching from the labor of it.   It's as if I was beaten up from the inside. I'm all bruise.

The storm no longer strikes without warning, or rather, I've become a storm reader.  Instead of green skies and tornado sirens, I begin to have trouble retrieving words.  Someone speaks, and there's a long delay before I understand what was said and can begin to reach for an answer.  It means parts of my brain are already flickering on the edge of the hyper-coordinated dance that will sweep in and take over from lovely randomness. 

I recognized the storm warnings on Wednesday, but it had been four years since I had a knock-down, drag-out seizure and I was cocky.  I even had a visitation. A beautiful blue jay perched on a branch outside my window, and I told my helper "That's my mother."  The bird began to peck at a branch and I said "She's telling me to eat," but I didn't do it.  I thought lying down and sipping passionflower tonic would be enough.  So after a while I got up and went to the dining room. The last thing I remember is standing facing the fridge. The next thing I remember is my niece saying "She died."

I learned to recognize my danger zones from a woman named Donna Andrews who not only woke herself from a vegetative state, but learned how to stop her ten seizures a day, some forty years ago, and with neurologist Joel Reiter, developed a protocol for teaching others.  She taught me to listen to my body, to recognize the risk factors unique to my being, to know where the limits of safety lie, for me.  In the last six years I've stopped many seizures, identifying what stressors were dragging me toward that edge and reducing them, one by one, until my brain no longer needed to throw an emergency switch. 

But in the last few months, stressors have piled up one on top of another and my ability to know how I'm doing has been numbed. Donna always told me I could go out on one limb or two but not three.  I was out on about five limbs last Wednesday, without knowing it. 

I cultivate awareness of the subtle states of my bodymind in many ways.  I control my immediate environment as much as I can, so that I notice changes.  I make my room a sanctuary, where subtle shifts will show up against a soothing background.  I retreat to my introvert's cave at the first hint of over-stimulation.  Sleep, food, exertion, temperature, emotion, sensory input, a build-up of stories.  These are the compass points, the factors whose levels I must be aware of.  If I'm not sleeping well, I have to eat extra carefully.  If I'm upset, I need to rest and stretch.  If I am collecting stories, I have to write them, give them away before they pile up in my head and trigger an avalanche. 

But half my belongings are 3500 miles away and I can't find that red velour sweater, or the golden mask of the Epileptic Ancestor that I've been working on.  I packed up a 35 year life and drove across the continent to my father in the hospital, in and out and in again, half a dozen times, had barely unpacked before I was flying home to Puerto Rico for the first time in six years, learned something shocking while I was there that interrupted my sleep for weeks, and also felt more drawn to live there than ever before (excitement is as dangerous as being upset), came back to more medical emergencies and unpacking, all the while moving into my mother's room, moving her belongings out, then drove to Albany, cocky still, I suppose, from my cross country trek, gave a talk and got food poisoning and had to be fetched because I was too sick to drive.  For the last few weeks my father was extremely anxious, his worries confused and repetitive, and I spent my waking hours talking him down from ledges, my adrenaline sky high around the clock.  There wasn't enough help and I was on all the time.  My fine tuned sensors got overwhelmed and after four years and a carefully built up buffer zone, I thought I was safe.  But I spent it all down in three hectic months.

This is where the model mugging metaphor is more accurate than it seems.  My body was in fact acting in my best defense, protecting me from unbearable levels of stress by blowing a circuit, like those little red buttons in bathrooms.  My beautiful, sensitive brain threw itself on the assailants, did those model mugging moves without my conscious participation, and left me to read the hospital reports.