Around 50 million people in the world have epilepsy. Most people who I’ve met with epilepsy have a very positive outlook on life. I’ve talked to a whole range of people – from those whose seizures are well controlled to those who are still hoping to find a way to control their seizures. I’m inspired by the way so many of those with epilepsy don’t let their disorder get the best of them.
Sadly, I’ve also talked to some people who have a very negative outlook on life due to their epilepsy. Some of them are very bitter about the way they have been treated due to the stigma associated with our disorder. I know I’m lucky in that my epilepsy is currently very well controlled. I’ve talked to many others who are not as fortunate as I am and some of them have told me that I don’t understand what it’s like for them and that I’m being an idealistic kid who doesn’t really know how limiting the stigma can be.
But I think the key to ending the social stigma associated with epilepsy is talking about it and educating others on what epilepsy is all about. With Sandpaper Smiles I’m trying to connect with people who have all kinds of epilepsy, people who are down about it and people who don’t mind having it, and even people who don’t have it. I want to form some kind of mutual understanding that in the end we’re all human and epilepsy certainly doesn’t change that.
Some people really don’t believe me when I tell them that they aren’t alone. The fact is that there are many people with epilepsy who are hurting and feeling abandoned and alone. I want them to know that they really aren’t alone with this disorder. There are many others out there who care about them and are here to support them.