I’m epileptic. And I talk about it. I talk about it a lot. I talk a lot, in general, but I don’t hide the fact that since the age of 15, I’ve had seizures.
The Epilepsy Foundation‘s ‘Talk About It’ campaign is designed to get people to talk about epilepsy, to get it out in the open and remove the stigmas that have long been associated with this disease. Talk About It.org was created by actor Greg Grunberg, who you may know from Heroes, because his son has epilepsy. His son, Jake, was 7 at the time (he is 16 now), and the actor says the family felt alone, lost and stigmatized. “No one was talking about it. (There was) a great deal of misinformation circulating … It [epilepsy] is NOT contagious, it is not a mental illness and it is not the result of any form of satanic possession. The key is understanding and information about the condition.” (HuffPost)
In the years since Grunberg has been working with the Foundation, he has helped to raise millions for epilepsy research, and has, in some ways, increased awareness, although it is still not enough. Many people in the epilepsy community have wished for a “big name celebrity” to take up the cause, making it as well-known as they are. I must admit, I have, at times, been one of these people, wishing we had Oprah or Stephen King to take up our cause, because to truly get people talking, that is what it will take.
The latest campaign, a few short videos featuring musicians “talking about it” points out where this campaign often goes wrong. Of the five videos, only two mention epilepsy. Kenny Rogers, discusses his grandfathers epilepsy, and how the stigma then kept him from talking about it. Josh Kelley says that epilepsy does not mean you cannot have a great college experience, as long as you talk about it. Unfortunately, the other musicians, Smokey Robinson (who mentions stigma, but not about what), John Mayer, and the Osbourne family all simply say “Talk about it.”
I watched these with high hopes, especially for the video from the Osbournes. After Kelley Osbourne had a seizure on the set of Fashion Police in March, she and her mother, Sharon, did talk a bit about the experience, but have been strangely silent about it since. Odd, since this is not a family that is good at keeping quiet. Frankly, I think Kelley Osbourne is exactly the type of celebrity the campaign needs to bring attention to epilepsy. She is famous, outspoken, talented, and smart. While we don;t know if she’s been diagnosed as epileptic, that is not really the issue. Talking about it is.
Either way, keep talking, my friends. Share these videos, and the good things on the Talk About It website with your friends. My favorite thing there at the moment is the first aid video featuring Zachary Quinto and Chris Pine.
There are nearly three million Americans with epilepsy. Chances are, you know one or more of them. You may be one. Let’s talk about it, and find out.