There are many misconceptions
and myths that continue through the centuries. These false facts
stereo types persist in to today's
modern society.With this blog of facts , stories.
And yes I am including my experiences in hopes those who
have epilepsy can say "Been there done that". And learn there are others who feel the same way and won't feel like there is nobody who understands them.
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Thursday, September 25, 2014
Hippocrates And Epilepsy
Hippocrates once said about epilepsy;
“It is thus with regard to the disease called sacred: it appears to me to be in no way more divine nor more sacred than other diseases “. Hippocrates knew that Epilepsy was neither divine nor demonic spirits causing seizures. He tried to teach others the truth I guess one could say he was the first advocate for Epilepsy Awareness. Unfortunately this was a lesson that had fallen upon deaf ears for many centuries. Even into the early 1920’s people with epilepsy were not allowed to marry or have children. Sadly society imposed mandatory sterilization on those diagnosed with epilepsy. With that in mind, people with epilepsy chose not to speak of epilepsy. Families kept it hidden, like a dark dirty secret of which no one would speak. As a matter of fact, my mother’s uncle had epilepsy. Even I am guilty of it to a small extent. I wouldn’t talk about epilepsy unless somebody asked me why I took medication. I would briefly say “I have epilepsy”. If I was asked about epilepsy I would give a quick answer and leave it at that
I realize now by not talking about my epilepsy I was not informing others and helping them to understand what it is and how it affected me. My silence made me a target for bullies. I was called shaky, drug addict and a drug dealer. If I had spoken with friends and other students in my class about my epilepsy I believe they would have understood my illness. Maybe the other students in my class would have helped me. It may not have stopped the bullying, but maybe, just maybe it would have made the bullies stop and think. If I would have told them about the times I wound up in the hospital, bitten my tongue, popped blood vessels in my eyes from severe grand mal seizures. How painful it was recovering from the miserable headaches after each seizure. Maybe it would have tapped into some part of their decency. But like I said, some bullies just harass people because they are different. For a bully, no particular reason is necessary.
Fast-forward about 20 years or so when I discovered a site called YouTube. I watched videos of funny accidents, homemade movies and old commercials. Out of curiosity, I searched for epilepsy videos. I don’t know what made me do it. To my surprise I found a few videos about epilepsy created by foundations and groups. I found other videos from people just talking about epilepsy. I created an account, and made my debut video. It was a bit awkward, but I just took a deep breath and started talking. With a lot of awkward silences and fumbling for words I did it. I posted the video. To my surprise I had comments and messages. Some of the messages were from people asking what medications and what type of seizures I have. It was not long before I discovered found out my videos placed number forty-two as most subscribed for the week. And I had comments telling me how nice my videos were, telling me I was brave, courageous for making the videos. I was not making these videos for accolades and praise.
And yes I did get hateful comments. I remember one delete don’t repeat “comment” in particular “I hope you have a seizure and die.” I tried to reply but the account was deleted. This is typical of a cyber-bully. They create an account, delete it and repeatedly make new accounts. However I did get a lot of comments from people who didn’t have epilepsy telling me how much they had learned. That provided just the incentive I needed. I like the idea people cared enough to learn about epilepsy. And it is great therapy to just talk about epilepsy even if it is just in a video and nobody comments. Being able to share the fact I went without a seizure for a certain period of time, getting support congratulating me, and then offering support when I did have a seizure.
My advice is to not hide or be ashamed of the fact you have epilepsy. There is always somebody willing to listen. All you have to do is just take a deep breath and start talking. If you are being bullied face to face that is upsetting. But cyber bullies think they have an advantage by remaining unknown. They just show by hiding behind a computer remaining faceless that they are just cowards getting their giggles at the expense of others. There is one important factor they keep repeating the same hate filled insults, just worded differently. I say ” if you are going to insult me be original, otherwise you are just boring me.”
This is dedicated to anyone with or without epilepsy who have been bullied And dedicated in loving memory those who have taken their lives due to bullies. In person, or online please remember there is always somebody willing to listen. : Epilepsy is a community disease and not one to keep to oneself. I strongly suggest to talk to your parents, trusted members of the community, friends, and even the law if necessary.