Tuesday, June 17, 2014

Smile for me, Jeremy

What people don't understand about people with Epilepsy is that having a seizure is the easy part. We lose that time, it doesn't unusually hurt, and it's really not our concern what happens while we're having a seizure. We leave all of that stress to those around us... loved ones, friends, even strangers in the worst cases.

A person with Epilepsy lives life between seizures. There's actually a term for the time between seizures if you can believe that. It's called Interictal. We live our lives in an interictal state; the time after, all the way to just before a seizure.

This is the time when our minds show us what is really going on inside, but it presents it in a way that we will never be able to describe it. That's why I see a therapist, and I write for you. I'm trying to be the first person with Epilepsy to truly describe what it's like for us to live.

When I come to the end of the interictal state, I start what's called an Aura, a seizure warning. An aura is exactly what it sounds like. I start to sink inside myself and it's like my mind stored every memory just for this moment. It's not like a dream, because every sense is activated. I'm seeing through my eyes from when I was young, sitting in front of my grandfather's television, I feel my face warm from the TV's glow. I'm playing in front of the TV, it must be with Playdoh because the smell is activating my sensory glands. I'm salivating, I can taste how the Playdoh smells.

Just then, I come to a fork in the road. My mind makes a quick decision as to which kind of seizure I'm going to have. Lately, it's been a type of seizure that tricks me into thinking that the aura was the actual seizure. I'm still stuck inside myself, like I was during the aura, but now I'm seeing through my eyes and not with them. I see myself saying words that I don't understand and I ride along and my body makes it's own decisions on where to go and what to do. My eyes look at Sara and I notice that she's moving her mouth as to talk but all I hear are echoes. My body must understand some of her commands because my body is moving, and mimicking her movements. "Smile, Jeremy. Smile for me. Smile big!" I can understand a little... the word "smile," I know that word. I can feel myself slowly gaining a little control of my body.

I'm numb, and I have already forgotten about the seizure. For me it was hours ago, hell, it could've been. Sara looks confused as I ask her what happened, because it looked, to her, that I knew what I was doing, that I was in control of my body and what I was saying.

As I start to accept the news that I just had a seizure, now comes the stage just after a seizure called the Postictal state, this stage can last for minutes to hours. My mood shifts to one extreme or another, and basically I'm anyone except myself. More often than not, I'm crying, and I just can't figure out why, and that is exactly why I'm crying... did you get that? I'm having a hard time understanding commands, and putting words together. So all I have to go on is the memory of this moment to try to explain it later.

Then, again, I'm back... Interictal. The time where I can live my life... except, wait, I don't feel right. I feel angry, I feel sad, I feel lonely, I feel excited, I feel, I feel, I feel, I feel...

This is a new topic: Interictal Psychosis. This is new to my doctors, too. Here's one definition: "The interictal "schizophrenia-like" psychoses of epilepsy conventionally are treated with antipsychotic medication with uncertain results." (http://www.ncbi.nlm.nih.gov/pubmed/10732658)

That's where we are now...