The Strobelight Effect
Close your eyes and picture a dark room. (Wait until you finish reading this actually, and then close your eyes and picture it.) There’s a strobe light that starts flashing slowly at first, but then gradually it speeds up the flash. The movement in the room such as people or anything else is only in limited vision. When the light is on, you can see the movement, but it always seems to be at a pause. When the light is off, you see nothing. Ironically, I use this to explain to you how the world of Epilepsy is.
What do you think of when you hear the word “Epilepsy”? Most responses are somewhere along the lines of, “It’s that disease where people go into seizures after seeing flashing lights or something.” What are seizures? “When the body begins to convulse or shake. People who have seizures are a danger to others and to themselves.” These are only partly true statements, bu they are all what are most commonly known.
When asking random people in a chat room if they know what epilepsy is, these are responses I got: “I know what it is, a neurological disorder that causes epileptic seizures.” When asking what their definition of a seizure is: “It’s a series of strong electrical pulses that run through the brain causing the body to shake and tremble.” Very many people don’t know what Epilepsy is, and if they do know of it, they only know about grand mal seizures and how flashing things sometimes cause seizures.
Amy Lee, my personal role model, and the founder of the “Out of the Shadows campaign to End Epilepsy” says on her website, "Most people don't know anything about epilepsy. If you mention it to someone, it's not unusual to hear, "Isn't that what makes you shake?" It's kind of sad, actually, because epilepsy is one of the most prevalent disorders in America. About 2.7 million people in America have it, and nearly 181,000 new cases are diagnosed every year. So many people don't understand epilepsy -- and this lack of knowledge leads to very negative stereotypes like: People with epilepsy are broken; People with epilepsy can't hold jobs; or People with epilepsy are dangerous to themselves and others. These are all simply not true. If more people knew the basics about epilepsy, it wouldn't be feared. It's time we all looked around and learned more about a condition that can affect anyone, in any place, at any time.”
Most people don’t realize that seizures come in all shapes and sizes. As Amy describes in her “about epilepsy” section: “The electrical burst can happen in just a part of the brain or it can cover the entire brain. If only part of the brain is involved, the person has a “partial seizure” – the part of the brain that is overwhelmed can’t function as it normally does, so the person might not be able to talk for a few moments or they might have a sudden arm or leg jerk. If the seizure affects the whole brain, then the person’s muscles will tense up and they may fall to the floor and convulse. This is what many people think about when they think epileptic seizure.” One person could burst out into random speech and come back into a conversation not even realizing they just said, “Blue fan chair dog folly parts with children and elephants.” Another person could become very still and completely zone out in the middle of a conversation or in the middle of a class and the teachers may thing that they are just being ignored or disrespected. In a very familiar case, another person may become dizzy and lightheaded, shake a little bit, and possibly pass out.
These are all cases that I have witnessed and experienced and they are all very frightening. Not just the stereotypical grand mal seizures that most people know about. That last example is my own. It’s tough living with it, and I’m very passionate about its awareness because I have it, and know a few people who struggle with it, whether it’s themselves, or family members.
Everywhere you go; you see posters and billboards saying support cancer awareness and donate to help find a cure, which is great, but I have never seen anything like that for epilepsy. Even if we can’t find a cure, at least put more awareness out there. If you ask someone what cancer is, they know it’s when a tumor and its cells begin to grow and consume parts of the body and hurt it. When someone is asked what epilepsy is, they go, “Oh it’s that one disease that makes people shake and fall and look like they’re possessed!”
We need to make this condition better known. Advertise its existence the way we do cancer and diabetes. Please feel free to discuss your opinion on this disorder, any ideas you may have to help make this better known, and any experiences you’ve had. Feel free to send me messages if you have any questions. You can also visit www.epilepsyfoundation.org
for more information.