Seizure Parade

Today was a doozy. I get to my Advanced Somatic Experiencing training which I’ve been both dreading and looking forward to since I graduated my Master’s degree. It’s Tuesday and Dr. A is supposed to call me at noon, or so I thought. I’m totally engaged in the Coherence material when my phone goes off. It’s only 10:07 and the area code is 403. It’s her I realize as I scramble towards the door, trying find a place to talk about my brain and my period. This training cohort is made up of over 100 people plus 30 assistants and I can assure you that my menstrual cycle is not of their interest.

I fly through the double doors at the back of the room. “Hello, Dr. A, so good to hear from you”. I was embarrassed to admit that I had totally fucked up the time.

“Margot, lovely to touch based with you,” she replies. “You’re having déjà vu again? Sorry it took me some time to see your email. Tell me what’s been going on.”

As she’s speaking I find myself walking in circles, confused at this damn building and aware of the echoes. There are two male assistants bumbling around next to me wasting time and I can’t help but blurt out, “well, yes I have been noticing déjà vu and some anxiety a day or two before my period.” Damnit, I think, as both assistants look at me with one eyebrow raised and a look of pure disgust on their faces.

I run up the stairs and weave through the hallway in an effort to keep my focus on Dr. A. This building known as the Polish Friendship Centre is strange, and the layout makes no sense. I finally settle in a room at the top with a window. Dr. A tells me that she thinks my “brain is angry” and that it would be best to increase my Keppra (again). I can’t help but notice some disappointment. I tell her that I’m thinking about getting pregnant. I’m on Pregvit and Vitamin D. She assures me that those are good and directs me to get a blood test next week so that I can keep an eye on my medication levels. I pause for a moment and then squeak out, “Dr. A- these déjà vus, they’re seizures, aren’t they?”.

“Afraid so, Margot” she says and follows it up with “I’ll let the pharmacy know about the medication increase and we’ll touch base soon”. Click.

A visceral experience that feels like a storm with black clouds and lightening boils up into my solar plexus. I feel like I want to cry but I try to hold it together so that ironically, I can return to the main room of my training and appear to be “Coherent” when in fact I’m completely dysregulated and at this point entirely dissociated. “Fucking Epilepsy,” I think to myself. “Poor old me, this is never going to end. Is a family even in my cards?”

I let myself mope and groan internally for a few minutes, but it made me get farther away from myself and from what Linda, our instructor was saying about Syndromes. I hold my own hand. I remember that I’ve done this before and this time, I’m doing alright. I go for a walk and release some tears to discharge my internal energy storm at break. Kirsten gives me a hug, as she saw me at my lowest last year in the middle of my Seizure Parade.

I remember that I am badass and in charge of my life and my epilepsy is something to manage and not the other way around. I find the innate rhythm of my system and I slide back into a more coherent state. I remember my power and for now, that’s that. Until next time…