You’re a What??!!

Disability Pride Month is almost coming to an end. I realized that I have talked about the history of disability, but I haven’t shared mine. I think it’s because I don’t really have that “pride” feeling. I celebrate and accept it for other people, but not so much for myself. Let’s discover why.

I have epilepsy, or a disorder of seizures. Many people don’t really see epilepsy as a disability. Mostly because unless I’m having a seizure, you wouldn’t know i have them. Seizures happen when there is a misfire in your brain. When I explain it to people, I describe it as a computer shutting down unexpectedly and your files go everywhere. And it can take weeks for the files to go back to where they belong. Despite people only teaching about one particular type of seizure, there are actually over 30 types of them! I have two different types: Tonic-Clonic, aka Grand Mal, and Absence Seizures.

Grand Mal seizures I describe as a shake-and-bake. So people will laugh and not feel uncomfortable, but also to describe what to look out for. With Grand Mals, I lose consciousness and drop to the ground, often with little to no signs. I shake uncontrollably and lose full control over my body, often overheating. (now you get the shake and bake) My body stiffens and shakes so violently that I will be sore for weeks and beyond tired. Because I lose full control over my body, I pee all over myself and don’t know it. I also struggle to breathe. These types of seizures can last minutes and can seriously cause brain damage. When I “wake” up, I often feel embarrassed and confused as to what happened. Seizures can cause you to forget things sometimes temporarily; sometimes it can be permanently. Even though I have had these my whole life, these are the ones that scare me the most, because falling means my safety is in jeopardy.

The other type I have is Absence Seizures. These are like I do a quick mental check out. Often staring at something, and I’m able to hear but not respond. These only last a few moments, and often people don’t realize I’m even having them. In school, I often got into trouble for not paying attention in class. The issue that people don’t realize is I have no idea that I have one. So when I “come to,” I will have forgotten what I’m discussing, sometimes even where I am. Usually I realize something happened because people ask me if I’m ok or stare at me.

Now that I explained them to you, maybe you can understand a little why I don’t have pride in my disability. I’m actually afraid of them and equally embarrassed. I try to remind myself that they are part of me, but it’s part of me that I don’t like. Picture this: you were walking to your car with a bag of groceries, and now you wake up in an ambulance with little to no feeling in your body, and you’re beyond exhausted and can barely keep your eyes open. Then you close your eyes, and now you wake up in a hospital with an annoying beeping sound. You have no idea where you are, how you got there, where your stuff is, or what the goop in your hair that is connected to wires is for. Then all of a sudden you get hit with this extreme wave of pain that I can only describe as getting sandwiched between two sumo wrestlers repeatedly. This is my norm.

What people don’t realize is that a seizure can be triggered at any moment to ANY PERSON. My triggers are temperature and stress. So a nice sunny day on the beach is scary and dangerous for me. Being stressed by bills can be a trigger. The most common trigger is flashing strobe lights, which means concerts can be dangerous as well as fireworks. Some people can be triggered by extreme fears, or they are just overly tired, and their brain is overloaded; like I said, it can happen to anyone!

Knowing this now, should I have pride in my disability or continue on this uncomfortable feeling?