This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!
My brain has too many tabs open, until the entire machine crashes. It can happen at anytime, for no reason at all. The seizures are the most visible part. It’s easy to see when I fall down and shake. It’s the most dramatic. The mood swings and lost time and forgotten memories can’t be seen. The confusion has no name. You can’t see the noise in my head or the way light and sound can be a weapon. Feelings can be seizures. My mind is an ocean of words and thoughts and dreams and fears and logic and fantasy. Are they memories or memories of dreams?
It’s all because of my temporal lobe. It sits behind my ear buzzing way. Picking which memories get to stay and which to throw away. The temporal lobe controls all the fun stuff: talking and thinking and writing and feelings and making memories…
Sometimes I can do all of those things. Sometimes I can do none of them. My left temporal lobe gives me the entire world and takes it way too. I hate to lose the ability to talk. I try to scream, but I can’t move a muscle. Sometimes I don’t know what is going on or where I am. I can’t remember my middle name. I lose track of time and I get angry at sounds. Words stop making sense. Letters swims away. The blackout is easier. I’m here, then it’s later. Things have happened, time has passed, I don’t have any memory of what might have been.
When I am stuck in semi-consciousness, it’s hell on earth. Light and sound are ice picks in my brain. I can’t control my body or respond to appropriate stimuli. I feel like I am floating outside of my body, looking down on the scene below. My muscles clench and release on their own accord. They move under their own marching orders. The veil between real and imagined become hazy. Time is irrelevant. And then there’s the vomiting…
When I was first diagnosed with Idiopathic Temporal Lobe Epilepsy in 1997, I only knew one other person who had seizures. I had never seen her seize or talked about her seizures. Over the past 20 years, I’ve met many other people suffering from seizures. They all feel like my best friend. Finally! At last! Someone who understands!
That’s why epilepsy awareness matters to me. I don’t want other people to feel as alone and scared as I did when I woke up in the hospital, unaware of what had happened.
The International League Against Epilepsy (ILAE) released a new categorization of seizures. All the names I used to know have changed. These terms are more for experts than beginners. The new terms make sense to me because I’ve been trying to describe my seizures for years. The more words we can throw at it the better. What I knew as a Simple Partial Seizure is now a Focal, Aware, Non-Motor, Sensory Seizure. It’s a mouthful. But it more accurately describes what happens once you understand the categories.
I need to educate myself on the changes. I need to understand them so I can explain them to everyone else. It’s so complex it gives me a headache. I’m relieved I didn’t have to learn it when I was first diagnosed. That was a dark time in my life. When I think about it now, I feel sad for the girl I was. I wish I had more people to talk to. I’m here to talk to you now.
NEXT UP: Be sure to check out the next post tomorrow by Lundbeck at livingwellwithepilepsy.com for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat March 31, 2017 at 7pm EST.