***This post is part of the Epilepsy Stigma Blog Relay which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!***
Once when I was in the middle of having a seizure, I had the paramedics yell at me. It was terrible. I couldn’t help myself, I was lost in my mind, unable to control my body. When I could float to consciousness, they were yelling at me to stop vomiting. I had been vomiting all day, I wished I could stop vomiting. They screamed at me to stop spitting at them. I promise you I was not intentionally spitting at them. I’m not a dick. It’s called a complex partial seizure.
All I wanted was some water. I was so thirsty. I couldn’t move. They treated me like a drunk, a drug addict or a raving lunatic. I was none of the above. Nobody deserve that, even if they are a drunk, drug addicted, raving lunatic. Seizures are none of those things. Medical professionals should know better. I’m afraid I’ll need an ambulance again. I don’t ever want to be treated like that again. I wanted to come downstairs, that’s why they were there. To help me. I couldn’t control my body.
Epilepsy is isolation. That’s what people don’t see. I try not to have seizures out in public. I stay home. I can’t drive anyway. Even when I want to do things, I can’t. I’m not going anywhere when I’ve had a seizure. Not for days and days. This limits my contact with the outside world. When I am the sickest, I am all alone, at home. When I feel sick, I don’t go anywhere. I miss soccer games and birthday parties and only my immediate family sees me. I stay at home. I don’t want to go out and have a seizure and be treated like a drunk, raving, lunatic. Which is something that happens to epileptics all the time. It’s hard to respond when you are having a seizure. Epileptics get shot by the cops with shocking regularity. People ask me if I’m drunk all the time. “Nope, I just bump into things and slur my words everyday!~”
I am misunderstood by the world. I can’t work because I can’t keep a schedule. When I have a seizure, all I can do is sleep. I can’t go to a job. I am down and out for days no matter when it happens. And it happens all the time. I can’t predict when I will have a seizure. All I can do it try to minimize my triggers. Which does nothing, but stress me out. How can I minimize my hormonal changes, or the path of the moon? I am lost, at the whim of electrical impulses. Who knows what makes the lightning strike where and when it does? Seizures are like lightning strikes that spread over the brain in a chain-reaction of altered consciousness. Sorry, I can’t make my scheduled shift tonight or tomorrow or the next day. Employers don’t like that.
Sleep consumes my life. After a seizure, sleep is all there is. If I don’t get enough sleep, that’s a trigger too. My seizure meds make me tired. It’s a side effect of the main effect of slowing down my electrical impulses. I have too much electricity for my own good. A seizure is exhausting. I am not lazy. I am sick.
I should be happy that so many people minimize my disease. They all think I should be functioning better since I seem so smart. I can’t remember shit. Ask my kids. It’s kind of a problem. Just today my son was upset that I couldn’t remember watching Buzzfeed videos with him yesterday. I couldn’t remember what we watched. People remember stuff like that? You can watch a video and know if you’ve seen it before? Everything is brand new to me! Yee-haw!! Epilepsy is a rodeo! You never know how the bull is going to ride.
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