Here's what you won't hear about: Living with Epilepsy
For the past three months I've experienced what some have lived with their entire lives. If someone were to tell me about it, I wouldn't believe it. I still don't fully understand it. One of my good friends from high school, Daniela, has lived with it for a lot more than I have. I had no idea she had to endure this at such a young age. Her story is inspiring, mine is just beginning and I'm still trying to grasp it.
I've noticed a change in my personality. I feel disconnected, apathetic and sometimes even utterly bothered by the most nonchalant things. I find myself needing different medications and boatloads of coffee every morning so that I can get through the day. I don't get it. Its as if the last three months have lasted a lifetime.
A week ago I crashed my car. Was I dizzy? No. Distracted? Maybe. I blame looking at my phone, but in the back of my head I still question whether or not my condition was involved. Theres no way I can know for sure. What I do know is that now I'm scared. Scared of driving, scared about what might come next, scared about the future.
I see pictures of me and I don't recognize the person I was while in college. I wake up feeling tired and nauseous; I've lost so much weight that none of my clothes fit me anymore. Pants are too loose, bras are too big, and I cant seem to really find a size that fits me properly.
My relatives think I have a mental disability because of it. I'm not sure thats true. The reviews about the medication I am on (Keppra, 1750mg) seem to resonate with everything I've said here. The upside is that I have had no seizures. As a result, I ponder whether or not it will be worth while to continue on the medications, but theres always that side of me that is afraid of what might happen if I do.
I'm not writing this post to make anyone feel sorry for me. I'm writing this because I want people to start thinking. I want, my friends, for you to understand that Epilepsy is not easy. Social media makes it very easy for me to share the upsides of my life and just how blessed I am to have such supporting friends and family. But that is not the reality that most people living with Epilepsy endure.
I want you to think about what it would be like to wake up every morning with a headache, nauseous and to enter your closet not knowing what will fit or what you can wear so that your classmates don't think you're starving yourself. I want my classmates that seem to think this is all easy for me because I did my BA at a prestigious private school in the States to know that I struggle immensely just to get out of bed and just how hard it actually is to focus. I want them to realize that I might not be the only case in the class, and that there many others who have it a lot worse than I do, and they wont tell you.
I am grateful for the amount of support I have received from family, even people who have met me briefly have treated me with the utmost care, and for that I am truly blessed. Yet, why can't I grasp on to that? I have a great support system, I have healthcare and professionals doing their best to try and solve my problem. It doesn't seem to be enough. This is the first time I have decided to share my life as honest and vividly as possible, so I ask that you read this and take it with a grain of salt. Nothing is going to happen to me. I am optimistic about the future yet scared; and thats an understatement. I love politics, school and the law, yet on this moment, it does not feel that way.
Sincerely,
R
P.S.: The Epilepsy Foundation (not sponsored) has provided me with amazing tools and forums that have helped me immensely with coping with my condition. If you're feeling generous or want to make a donation for those who are not as lucky as I have been, check out the link here