I've mentioned that October is Down Syndrome Acceptance Month. I've written about Autistics Speaking Day, November 1st, and that Autistic History Month is the entire month of November as well. What I haven't discussed, yet, is that November is also Epilepsy "Awareness" Month. I use quotation marks because you know how I feel about awareness campaigns. I don't quite agree with Epilepsy Acceptance Month either. While I want to be accepted as a person neurology and all, included, accommodated for because we humans should take care of our own, I do NOT accept Epilepsy. I really don't like it one bit. Perhaps it should be Epileptic Acceptance Month. Yes. That is the November for me.
I begin writing my way to self acceptance.
As soon my body would let me, I described my Reflections After a Seizure. The account was fresh, but my mind was hazy. I still seek clarity. What did I go through that changed me through and through?
Before the seizure, we were playing as a family. The lights were low and I was cuddled up with one of my two, surrounded by every stuffed animal in the house. That's the only way to pretend "camping" according to Max and Ty. My husband was trying to get a flash light going, because all good campers carry a flashlight. It had one button with four functions; low, high, strobe, then off. He made it three clicks.
What is it about strobe lights that trick the brain so? They distort time and space. The effect is quite provocative. It was. Now, it is terrifying. All the lights are.
The pulsing strobe shined on the ceiling fan above me. I was captive. My eyes transfixed on the beat of it. I hated it as fast as I could think, which might have been slow. I don't know. I yelled to my husband, "No strobe!" I made a one line joke about him making us all have seizures. That word? Seizure. I am having a seizure! Then I stopped thinking and started dreaming.
I left the room, but it wasn't the same room. The hall either. Perfectly distorted. Birds' eyes replaced my own. My threatening to throw up stomach guided me to a bathroom. I sat down on the floor. Somehow I told my husband, or he already knew. I felt my body begin to fill up with heavy, like the liquids inside me were being exchanged for the weight mercury. My core seated hard. My limbs succumbed until my arms couldn't hold me up. I was pulled. I melted slow. Down.
My vision faded in and out with labored blinks. Present, past, Max dancing on his tippy toes, dirty street corner, present, past, my crooked living room, the file with EEG results from 15 years ago, present, past, my husband kneeling over me, the first time we met.
My ears heard all. Paul Simon's voice was the soundtrack. The drums. The reminiscent story of the words.
Why deny the obvious child?
And in remembering a road sign
I am remembering a girl when I was young
And we said these songs are true
These days are ours
These tears are free
The cross is in the ballpark
I heard my husband call my Mom. I heard him call 911. I heard his voice but my voice was silent to everyone, except to me.
My body was dead.
My mind hovered on the brim of consciousness.
And all these things were connected together with a sense of peace so compelling that even the instinct that I might die, right there on the floor, seemed pleasurable.
My mouth wouldn't move, but I only wanted to tell my husband not to worry. I wasn't worried. I was beautiful.
Then my mind might have been gone for a moment. I felt a juncture of not. I felt like I would begin to shake. I dreamed the other way though. I swear I did. It might have only been in my head. I don't know.
I came to enough to get sick all over the place.
I came to enough to be grateful for the paramedics on their way.
I was as tired as I have ever been in my life, but I wasn't dreaming anymore.
Real was hard.
Being Epileptic is hard.
I write all this for acceptance, yours and mine, and I will keep steady at it.