This is from a guest writer. He wrote this for my blog, originally as a comment, but I wanted to give it its own independent posting. We met at the Epilepsy Awareness Expo in Anaheim, and he’s the fellow that I gave the shout-out to in the blog entry immediately following the trip. He has been an awesome support to me, and has been someone who understands my experiences, both as a person with epilepsy and as someone who is athletic. Thank you so much, for allowing me to post this to the blog, and for being awesome.
What seizures and epilepsy mean to me.
First, I am an athlete. I have been almost all of my life. I played semi professional basketball that took years of passionate training and extraordinarily hard work to get there. In all that time, not one of those days or hours was wasted time.
Second, I wasn’t born epileptic. I was born with, undiscovered, AVM clusters that didn’t manifest until later in my life. I was in my late twenties when my AVM actually burst. That, of course, triggered an intense and dangerous brain surgery followed by a few years of treatment/recovery and another brain surgery almost five years to the day after the first one. I wouldn’t be diagnosed epileptic for another year and a half. Before that I, like many brain surgery patients, was told that one day the seizures would go away and I wouldn’t need the medications any more. Unfortunately that wasn’t to be the case.
The process in the beginning was devastating. I couldn’t speak, I didn’t know who almost anyone was including the person I saw in the mirror each day. One of the first things I remember a doctor telling me was that I couldn’t do any sort of contact sport every again. That didn’t sink in right away, mostly because understanding anything was a challenge. Then time pasted an I gained cognitive ability again. The realizations of everything I was told before seemed to fall on me at once. It felt crushing. The thing I loved and worked so hard for was further away than it had ever been. But I thought, “to hell with all of that!” I knew the doctors, the nurses and even some of my friends and family didn’t know what I was capable of. They hadn’t seen the hours I’d spent each day pushing my body to its limits. They hadn’t watched me pour my heart and body into something with every ounce of passion I have. And they certainly never saw me fail only to immediately turn around and say it myself, “this will not stop me, I will get better!”
So I started to push myself again, in new and sometimes more difficult ways. Eat right, rest when needed, don’t stop working out, have a seizure an take time to recover, smile on those hard days, fight, appreciate what you’ve already done and have, push push push and never stop. None of it was easy. I’d be lying if I said it wasn’t the most difficult things I’ve ever had to do. But I would also be lying if I said it wasn’t all worth it!
A seizure, and epilepsy, to me is the greatest challenge I’ve ever faced. It’s the hardest this to talk about and the easiest reason to give up sometimes. I’ve lost years of memory, the ability to play the way I’d like to and have to take medications that slow me down for days sometimes. But one thing it hasn’t done is define me. I am still the person I always have been. I still push every day to get the things I want out of life! That will never change. One of the greatest quotes I’ve ever heard (pardon the french) on epilepsy is this; “Epilepsy is just a f*cking inconvenience!” I whole heartedly agree with that! It may hinder my abilities. It may slow me down sometimes. It me hurt me physically. It may upset me. But it cannot change who I am and it will NEVER break me.
A note on this blog. Thank you! Thank you for being so strong yourself. Thank you for writing words of strength. Thank you for your hopefulness. Thank you for being inspiring. Thank you for being more than your epilepsy! I love this blog. It is the kind of hope that anyone and everyone who has to deal with epilepsy should see.