This is part of a month-long series that my teen daughter and I are writing about her life and learning to live with epilepsy. To start at the beginning, click here.
Yesterday was a rough day for Beth. I posted this about how the day started. When I sent Beth to school, I wasn't sure she was going to make it through the day and, wow, did I feel guilty all day long about sending her. And then around 2 pm, she called from the nurse's office at school to tell me that she had had a partial seizure - this one causing her right eye to close and droop during class. And the guilt intensified. She had been right and she had known that something was off that morning.
We had a long talk about how we both felt when she came home. We didn't agree on everything but I know she knows that I love her more than anything and I'm trying to balance her physical health with her other needs that I see as her mother.
I asked her if she wanted to write anything about how she felt and she decided that it was a good time to write a little bit about what makes her angry and some of her pet peeves about dealing with epilepsy and school. Some of the things she wrote about are what led us to switch schools this year.
From Beth:
Epilepsy and seizures are not something to joke about. Epilepsy is a disease that you can’t cure. Sure, maybe it will go away in time, but even if it is scientifically “gone,” it stays with you forever.
People shouldn’t make casual jokes about seizures; it’s like making a joke about cancer. Seizures are scary. Plus some people may be very insecure about epilepsy; you wouldn’t make fun of someone’s size, would you? It’s very offensive, not only because it may be an insecurity, but having a seizure is very dangerous. Not everyone knows what a seizure is. Honestly, I don’t know what they think a seizure is.
One of the things that I’ve seen while passing through middle school and getting ready for high school is that people don’t trust you as a teenager. When we have a substitute teacher in class or even when I’m at a new friend's house and I have a migraine or I’m having a complex-partial seizure, they don’t believe me. They think I’m trying to get out of whatever it is we’re doing at the moment. I’m not. I need to leave. Now.
They believe I’m lying. Just because they can’t see my headache or my seizure. I find it pretty insulting that they don’t trust me because of the movies they’ve seen, or other people they’ve dealt with. I don’t know about you, but in class or in movies and there’s someone faking sick, the entire class is watching that one person. The class is snickering into their hands or whispering about it. The person faking is normally making it look really fake to show off to their friends. When I go up and say that I need to go to the nurse, the sub might laugh, or look at me critically. I’m not lying, I promise.
Some more pet peeves I have about epilepsy are the school nurses' offices. Where do I begin? I’ve seen kids walk in there with diarrhea and the nurse just gives them a cough drop. I go in there, they know about my epilepsy, they give me Advil, and they kick me out. I have to ask to call my mom, and they won’t let me lay down. The school doesn’t even have cots. They sign my pass and I leave.
I know that there’s class I’m missing, but will I learn anything with a migraine? Being in class in that condition is basically the same as staying at home and missing class. Except resting at home would be more beneficial because I’m recovering, not working my brain even harder. Going to class with a migraine is like running on a sprained ankle.
*If you'd like to read all of our 31 Days posts about living with epilepsy, click on the button on the sidebar or start here. And if you're wondering what the heck is going on and who Beth is, click here. :)
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