Whenever I end up in the hospital they ask me if I am on drugs.
The only drugs I am on are legally prescribed, anticonvulsant, pharmaceutical drugs. The doctors ask me repeatedly if I have taken any hard street drugs. They never believe me when I say no. I am honest about my eating and caffeine and drinking habits. I tell the truth about smoking. I do not take drugs. They never believe me. Seizures look like drugged out states. People in pain look like junkies. I apparently look like both. My liver has been infected, so clearly I was an IV drug user. I am honest to a fucking fault. Ask anyone. I’m not known for keeping secrets. I’m not on drugs. I have never stuck a needle in my body, I’m not on drugs. I’ll tell the doctors the truth. They don’t believe me because seizure victims look like drugged people. They don’t like drugged people. They certainly didn’t treat me well when they thought I was on drugs. I don’t know why seizures make me vomit. But they do. I’m not drunk or on drugs.
When they knew I was having a gallbladder attack, I was treated kindly. They at least saw me expediently. Of course, due to my liver, they asked me time and time again, have you ever taken IV drugs? I tried to explain how difficult my veins are to find. I would never be able to be an IV user! My daughter’s cesarean birth was delayed because five or six different nurses couldn’t get the IV in, on several different spots, on both arms. I’m not a drug user. I’m an epileptic. It’s a real bitch. On so many levels. My liver was most likely infected because of my seizure meds, or my rotten gallbladder, which has since been removed.
The last time I was in the ER they sent me home with paperwork that said I had an “Altered Mental State-Resolved”. It took me a few days, because my brain was too foggy and mushy to care, but I eventually realized that it that said nothing about seizures. I asked my husband what it meant. He shrugged. “Does that mean drugs??” He nodded. “I was having seizures all day! I have epilepsy!”
“They can only judge what they see. The ER Doctor didn’t see you have a seizure.”
She only saw my confused, postictal, fugue state, that lasted an entire day, accompanied by vomiting and dehydration. I get it. I get it. Seizures are scary and confusing. Sometimes I wake up to people looking at me like what the fuck did you just do?
As it was happening, I was screaming, trapped in my head. I’m an agreeable enough person. If you tell me to come down stairs, I’ll come downstairs. When I had my gallbladder attack, I met the paramedics at the door, ready to go with my purse and wallet and coat on. The altered mental state time, I was stuck in a seizure unlike any other and I couldn’t control my body. Even if I thought I was talking, I wasn’t.
The brain is a cruel mistress. I would be lying if I said I didn’t enjoy my brain. I amuse myself with puns and allegory. I am proud of my writing. That is all my brain’s doing. But my brain also hijacks my body. Just like a terror attack, everything is okay. Until it’s not. The Brain Bomb goes off and I drop to the ground.
My brain makes me cranky and sensitive to sound and light. I can’t drive because I can’t trust my brain to keep me conscious. It’s a real pain in my ass. My family can tell when I’ve had a seizure. They have to tell me. I change somehow. I can’t tell you how because I don’t remember. My voice changes, my eyes look around with childlike wonder/terror. I can’t think of the words I want to say. In the days after my handwriting changes. If I can even write at all. I am not in control of my body. I vomit and spill water all over myself. Did I mention it’s a real pain in my ass? Once I spilled water on myself. I was unable to drink it. I hoped that perhaps osmosis would be enough, so I laid in the water for hours and hours. I hoped we had some left over gills from our common fish ancestors.
My head is half-pounding today, the pain lingering behind my eyes and centered in my forehead. It feels like my brain is mushy somewhere inside there, like my spinal fluid levels are off. Headaches are usually a sign of a seizure. It’s classic postictal (post-seizure) state. It’s a ice pick through my brain. Just like that man who had the train spike through his skull and lived. That’s how I feel. I look like a drunk, drugged out person. Apparently, I look like someone who is unworthy of sympathy.
Maybe that is why so many people are dying from heroin. They are afraid to seek treatment. I am afraid to seek treatment. I’m not even on drugs. I don’t want to be treated like I am.
A seizure is so much worse. I can never get clean. There’s no rehab for me. I can just hope that the next time the hospital will believe me. I didn’t take any drugs. I’m having a seizure. It’s not my fault. I’m not drunk! I’m trying to answer your questions.
The first time I ended up in the ER, in 1997, they asked me what drugs I took. The most recent time, in March, they asked me what drugs I took. The answer is always the same, “What the hell are you talking about? I was just at home, minding my own business, not taking drugs. What the hell happened??” Seizures are like that. When you blackout, you are black out.
I wish people understood. I wish the paramedics and ER doctors understood at least. I’m going to keep talking about it until they do. What else can I do? I am at the whim of others when I have a seizure. It terrifies me.