Emotionally, a seizure feels like a complete loss of control (which really, it is). It’s scary though, to want to will your body to do something that it just won’t do. I’ve been at airports or out socializing, or running and I start getting myoclonic seizures. I realize that they are happening and I try as hard as I can to mentally will-away the seizures. So I can keep having the conversation. So I can keep running. So I can continue to act as if nothing is happening. Sometimes I will have a single myoclonic seizure, and sometimes there will be multiples.
I remember when I got auras. When I was younger and fairly early after the diagnoses, I got auras. An aura is a sensation that identifies the possible pending seizure. I had time, even close to 30 seconds, between the aura and the seizure. I had time to get to a couch, bed, even at least be on the ground. I had time to open doors and call for help. I haven’t had auras in a long while. What that means is that I don’t sense the seizure approaching. I have no idea, and no way to get myself to a safe space. I wake up on the ground. Sometimes with people and sometimes alone.
I remember when a myoclonic seizure guaranteed it would lead to a tonic clonic one. A myoclonic seizure is a brief spasm (possibly not even visible), and brief disorientation. It can be a short spasm, so I might drop something. Sometimes it’s so minor that I tip over the coffee I am holding but don’t drop it (it still means spilled coffee). My knees might buckle but I don’t fall. Back in the day, myoclonic seizures means I had time to get myself somewhere safe and let someone know. Now it just means spilled coffee.
So what does it feel like, emotionally? To me, there is a whole range of things. First and foremost, I am usually embarrassed. I’ve been told, repeatedly, that it’s not something to be embarrassed about. My friends who are first responders, or the people who have seen them before have told me not to feel that way. The limitation in that moment, when I am actively experiencing a seizure, I am not aware. I am completely unconscious. I wake up on the ground with people hovering around me. I should be grateful that people care, and I am. That doesn’t stop the feeling of embarrassment.
It’s frustrating. I don’t have goals that I want to reach related to being seizure free. I’m not super pumped to drive again. I still travel and run and am willing to live alone. I don’t want to have any seizures, but that’s because I don’t want to be injured as a result. When I have a seizure, even if it’s in my sleep or someone is around to help me, it’s no less frustrating. Every seizure is an opportunity for an injury.
It’s depressing. I won’t ignore this. It can be isolating. No one else really understands. Even others with seizure conditions don’t have the same experience. There have been times where I have been overwhelmed with the magnitude of knowing that for the rest of my life, this will be my reality. My body aches after a seizure. My heart aches. My brain wonders why I tell anyone, why I include people in my life, why anyone else wants to be part of my life when I’m so broken.
Seizures are embarrassing and frustrating and depressing.
Being epileptic is a little different.
I look at the “limitation” I have. This was not of my choosing. This was not as a result of something. This was something that came upon me. I do remember a time when I didn’t have epilepsy, and seizures, and auras, and medications, and side effects, and schedules, and appointments. I remember a time when those kind of things were no where near being a part of my life. However, that is not the life I have now. I don’t know what my life would be like without seizures. Without all of those things and without those feelings.
The goals that I make appear to be unrelated to my epilepsy. Running a marathon takes training. It takes focus and dedication. Marathons are hard enough without a neurological condition. My brain has decided that it’s going to abuse my body with seizures. My brain decided twenty years ago that for the rest of my life, this would be my reality. My brain decided that my body could endure seizures. A few years ago, I decided that I wanted to run. I decided that I wanted to race. I decided that my body could embrace the feeling of striding across a finish line.
Epilepsy and seizures have the potential to drag me down. They have the ability to stop me where I stand. They can limit me in ways only I can understand (just like every person has their own limitations). Epilepsy can also be empowering. That anchor may still be there, and it may be a weight I have to pull. But it doesn’t stop me from moving forward. Despite what my condition throws at me, I move forward.
This doesn’t mean that being epileptic isn’t a form of adversity. It just means that, in the face of adversity, it’s more important not to blink.