I think I’ve always been messy in both a metaphorical and literal sense. I’m 28 years old, and if I ever have company at my house they will almost certainly be subjected to the eyesore of an overflowing laundry basket in the corner of a room that isn’t even remotely close to where the washing machine is. I drive an exceptionally loud ‘96 Corolla that has gradually become a graveyard for water bottles and I genuinely never remember to get my oil changed. I prefer to think of it as organized chaos.
Epilepsy is chaos in every sense of the word – like throwing a ball at a window. It hasn’t always been a part of my life. I was diagnosed after a very violent and traumatic event took place that I will get into another time. Suffice to say, this specific event has changed me in ways that I was ill prepared for.
When I was 8 years old, my mother bought me a notebook with a cartoony and wholesome picture of a frog on the cover that I kept as a diary. One day I wrote, in purple magic marker, that I would grow up to be a very famous singer. I was a remarkably shy kid growing up. Very quiet and introverted at school with the exception of when I was around the few friends I had made and decided that I trusted enough to be myself around. I was bullied relentlessly for reasons I never fully understood but even at the young age of 8 I started to figure out my limits – I would never be a popular kid. So the idea of growing up and sharing my talent for singing with the world and using that as a way to say ‘hey! I’m a person too! and I have things to say!’ was something that brought me tremendous comfort and helped me to navigate through elementary school without totally hating myself – because one day they would see me, even if that day isn’t today, someday – they will see me.
My epilepsy makes me feel like the underdog all over again. It’s been 20 years since I wrote that statement down. And while “shy” is no longer the word I would use to describe myself, and I am heavily involved in music (a promise I am so glad I kept) I can’t help but feel like there’s this thing about me that turns people off. You might never know it, but I’m anxious in social situations all over again which was something that had taken a ton of effort on my part to eventually work past. Having epilepsy has forced me to both internally and externally prepare myself for a seizure in virtually every situation I find myself in. Even something as simple as taking a shower has been a source of anxiety for me because oh fuck, what if I have a seizure while I’m in there and what if I fall super hard and what if I injure myself and what if my partner isn’t home to help me get out of the shower and what if…
I know that having epilepsy is not my fault. I know that I wish it could be different, and I know that if I could change one thing about myself I would no longer be subjected to the harrowing experience that is a grand mal seizure. I know this. Still, there is an unexpected but definitely perpetual sense of guilt that has accompanied my epilepsy. It took me a year to finally stop feeling embarrassed around my partner during a seizure – and although he has never made me feel insecure (truly, he’s been incredible), being unable to control what my body is doing and periodically slipping in and out of consciousness is extremely disconcerting. If you’ve ever wanted to experience the visceral feeling of trusting another human with your body and life, epilepsy will absolutely give you that opportunity. In a way, I feel that it has made what had already felt like a very special bond between me and my partner that much more unique and durable. In many ways I wish it was never a factor.
It occurred to me that documenting my experiences may not only be helpful to myself, but also helpful to anyone who tunes in to this blog and it resonates with them in some way. Whether you personally have epilepsy, or you love and/or know somebody with epilepsy, or perhaps you know me, or maybe you’ve heard my music, or you haven’t the foggiest idea about any of the above – I hope that by sharing my raw, uncensored and heavily transparent story, no matter how chaotic – I will finally be seen.