Anita, 26, USA
From looking at me you would never guess that I have epilepsy. That’s right, it could happen at any moment. A seizure, the kind they used to call grand mal – you know the ones they most often show on tv and in movies – where the person is rolling around on the floor foaming at the mouth. It didn’t always happen this way. When I had my first seizure I was six years old and I thought everything was okay until I got so dizzy I sat in a puddle. My eyes went to the far left of my head and I could only speak gibberish, although I thought I was speaking clearly. Then as the teachers gathered around me, I knew something wasn’t right. It wasn’t a lot of guessing as to what was wrong or why. My grandmother also has epilepsy and so it’s just been accepted that this was passed down to me like an unwanted family heirloom.
I am 26 now, and twenty years later not much has changed except that I am no longer awake during my seizures. That is the problem though for me, that not much has changed. People still don’t understand what a toll it takes on a person’s body, let alone the brain. You want to know what I had for breakfast last week? I don’t know. You want to know what happens in a show I liked? I don’t know. You want to know what something I tried for the first time tasted like two weeks ago? Can I phone a friend? Sure I do remember some important things about my life but I am also continually fighting to remember others such as how to spell words, in what order I am supposed to do certain things, how numbers work, certain memories and let’s not even start on the physical hardships.
This is all why I felt it was time I got my voice out there. Instead of pretending like I didn’t have epilepsy, maybe it was time others could see someone like me struggling with it, so they would feel less alone. Of course there are those with added hardships, but I can only tell my story, explain my experience, from my perspective. So that is what I am trying to do and that is what I hope to inspire others to do with Epilepsy Talks. Come check it out! Each week there will be another video about epilepsy but from a human perspective, not a doctor, because we already know what they think. It’s time others understood what we go through, it’s time others see that it’s okay to be our friends, partners, co-workers and family members.
Oh and here is a tip for those living with epilepsy: own it! Because it doesn’t matter how hard you try to get rid of it, if you can’t outgrow it, then the best you can do is try and control it. So just own it! The people that really matter won’t run away because of this.
- May 28th, 2015
Contact info:
Twitter: @anitacrumbly
