I am writing this post on February 7th which means we are only three days away from International Epilepsy Day (the day this post will go live). I always do my best to post on Facebook during November because that is Epilepsy Awareness Month, but I've never actually done anything to recognize International Epilepsy Day. There are so many things that I could say and would like to say about epilepsy, in fact in 2016 I wrote a post on here that I titled The Epilepsy Effect. I talked about all of the hurtful and insensitive comments that people have made over the years and how I felt about that but I never really touched on what it's like to have epilepsy. I never touched on the fact that it comes with limitations, a huge set of emotions, and feeling like no one can ever understand what you're going through. Today I want to be completely open and talk about my life with epilepsy.
Having epilepsy is scary and sadly it's also somewhat of a taboo which is why it's harder to talk about or even tell people that you have it. I was diagnosed with epilepsy when I was eight years old and am now getting close to being three years seizure free which blows my freaking mind! When I wrote the first part of this post, I was having seizures about every other week (that had been my seizure schedule since probably middle school) and a few months before I wrote that post, I had just finished testing to find out if I was a candidate for brain surgery. A few months after I wrote the post, I was put on a new medicine that actually caused me to have seizures more frequently. Long story short, I was taken off of that medicine and put on the one that has now blessed me with no seizures.
It took 13 years for me to reach the point of being seizure free and that felt like the longest journey I have ever been on. Of course I had the love and support of my family and friends but there were also people who weren't so accepting and would make jokes about it which really definitely did take a toll on me. Just like any other teenager, I didn't like that I was "different", I hated that I couldn't participate in certain activities that my friends could, I hated that I couldn't drive, I hated that I had trouble with school, but most of all I hated that I didn't have anyone who understood what it was like to have epilepsy. People will say "I get it" (keep in mind that I know when people say that it is coming from a good place) but no one can actually get it unless they have it.
I now do feel more at peace with the fact that I have epilepsy and I think that in a weird way it has shaped parts of who I am. When I became seizure free that came with another set of challenges. I was now able to get a job and I was eligible to get a learners permit. Getting a job wasn't a huge challenge, what's a challenge is deciding whether or not to tell anyone that I do have epilepsy. That's a choice that I still struggle with and it's far from easy. While I do feel better with at least one person around me knowing, I don't want people to think of me as just "Alison the girl who has epilepsy". I want people to get to know the real me.
The being able to drive thing became more of an emotional thing. Since I was 13 years old I had been told that I would never be able to drive so I would have to rely on those around me or public transportation. Relying on others for transportation became my normal and I never realized how much that would actually hurt me. Even though I am now eligible to get a learners permit I have chosen not to because I'm not ready for that. This is something that so many people have brought up and it really gets to me. I get so defensive because no one can understand why it's a difficult decision for me and how the only thing I can think about when I do think about driving is the fact that I could have a seizure while driving and end up hurting someone. It's a horrible way to think and I wish I didn't think like that but I do and it's something that I'm going to have to find a way to deal with and overcome.
Last year I read a book called A Mind Unraveled by Kurt Eichenwald. It's an amazing book and if you haven't read it then please do because it really will give you at least somewhat of an understanding of what living with epilepsy is like. He talks about how he was told to hide the fact that he has epilepsy (sadly this is something that most people, myself included, are told), how a neurologist kept telling him that he didn't actually have epilepsy and that it was all in his head, how he was forced out of college, and how he was fired from his job all because of his epilepsy. Reading this book felt like I had a friend who just finally understood everything which is all I've ever wanted and I felt like I wasn't so alone anymore.
I know that this post was very long and if you got to this point then I applaud you because it's a lot. I'm hoping at some point to make a part three to this but if I do then I'm going to save it for a time when I really need to talk about it or want to raise more awareness. Hopefully I'll soon post something that's a bit happier but until then I hope that this post helped at least one person. My goal when posting anything about epilepsy is to help people. I don't feel sorry for myself and that is something that I can not stress enough. Life is too short to spend feeling sorry for myself for having a medical condition. I can either feel sorry for myself or live with this in the best way possible and be grateful that I'm able to live the life that I have. Good news is that I'll always choose to be grateful for this life that I've been blessed with. Happy International Epilepsy Day!
