What No One Tells You About Epilepsy

I wasn’t prepared for what my seizure episodes would be like; I got no warning.

Whether it’s waking up in an ambulance, on the floor with people circled around you, alone, or even with a gash in your head, the confusion is still the same. After six to even 40 minutes of pure darkness, you change. Something in you is taken away each time. Nobody told me how to handle them or the emotions that are dragged along with them. The sadness and confusion when you inevitably feel you are fading as a person after each seizure. The strange and overwhelming emptiness that will eventually come over you when you understand the things that made you who you are cannot be remembered.

Am I still me? Will I get those things back? Sometimes I just stand and look in the mirror. I look myself up and down until tears fill my eyes. After a while, I decided I was not myself anymore and I was instead somebody new. Maybe not necessarily somebody who I wanted to be, but someone new.

Every time it happens, I feel different. Each time I feel like something in me shifts. I’m not suddenly a different person or anything close to that, but I feel that with each seizure, each involuntary jerk of my body, I lose a little piece of myself. Each time I seize and wake up in an ambulance or on the floor or with a bloody bump on the back of my skull, I lose a piece of myself. I don’t know if I will ever get those pieces back.

The people I confide in, people who love me with everything in them, just don’t understand. They offer me help and try to help me connect any missing dots or explain to me how I was so I can better understand, but I don’t know how to get them to see. It doesn’t work like that. They will never understand that these episodes make me not recognize myself most days. Things that made me who I am are just floating around in time or space, in the darkness between being consciousness and death.

I don’t want to do things for the first time again. I have to sit down and force myself to understand and take in what I can’t do anymore. Force myself to get that some things are deemed as dangerous for me and even for others that used to be a staple in my daily or weekly routine. I can’t go on long walks, drive, hike, kayak, take long baths, or even shower without a chair. My whole life was flipped upside down and nobody warned me. Something as little as driving breaks me down. I don’t remember what it’s like at this point. That seems so small to some people, and I know there could be worse.

Somedays this all makes me feel so alone it kills me. It breaks my heart.

There are others with epilepsy. And there is me. Even when I want to give up, give in, do anything it takes to end it, I just remember those I love and those that love me.