CURE - Citizens United for Research in Epilepsy It's Time We Found a CURE CURE Epilepsy Research

Story TitleIt started in mid January. I was getting ready for school; brushing my hair. While brushing my hair, I felt as if I was being jolted. As if I was stuck in my world looking at myself and I could do nothing. I was slightly scared the first time but I brushed it off and went back to brushing my hair. A few minutes later, the jolting came back and much worse this time. My mom heard my brush drop to the floor and I reassured her I was perfectly fine. However, she was very concerned...as she herself had been diagnosed with epilepsy when she was very little. I insisted I was fine and went to school.

The jolting had consisted from the time in January to March. We moved to a different area in March and I was under a lot of stress from my family situation and school. I didn't want to leave school and my parents were separated for a while, suddenly deciding to rekindle their relationship. So, I was definitely stressed out for a 15 year old girl. This was supposed to be my year of starting out and becoming who I needed to be in this world. But it felt like everything in life was holding me back: my parents relationship, leaving my only friends I knew in Arizona and whatever this jolting problem was. I was so mentally drained and stressed out at 15 years old. I was trying too hard to control my environment.

Unfortunately, late that March I was preparing myself for a flight at 4:45 am and lost complete self control. I was exhausted and waking up at 4:45 am was too much for my body but I didn't think there was any reason for me to worry about it. I was young. The paramedics came to the condo. I just remember waking up to them. From what I was told I had a full blown grand mal seizure. I hit my head on the wall and knocked out. When I woke up, everything was extremely blurry. I just remember not knowing where I was or what happened and why all these people were in front of me; I was scared to death. I wanted to be gone. I didn't even want to be in that room. It was so overwhelming. My father was scared and worried; My mom was attentive, concerned and worried. They both were equally loving about the situation, just in their own way.

The rest of the day was very relaxed. I didn't care what others thought. I just simply wanted my mom and dad. I wanted to breathe and not stress. After consulting a doctor about the seizure, he informed me it was a one time thing. My mom on the other hand was not convinced that this was the correct diagnosis. Unfortunately, she turned out to be right. A few months later I had another grand mal seizure.

They finally diagnosed me with Epilepsy late in 2006. I got a medication and have been pretty stable since then. I still have small glitches here and there whenever I am super tired or stressed but overall its much more balanced. I'm grateful for the parents, friends and support overall. Without them, gaining self confidence through these times would be extremely hard. My mom is the person who was the most understanding because she went through a lot of the same things.

1. For people out there with children, spouses, friends or parents: Epilepsy is not a joking matter. Do not make fun of seizures. They are not funny. Unless you've experienced it, then don't laugh it up. I can hardly afford my bills because of medical expenses...it's not a funny medical condition.

2. Be sweet to others no matter what. You don't know what kind of experiences they have themselves. Mine are pretty bittersweet...I have a medical condition that sucks to pay for and live with! But I've also learned time is precious and so are people. Doesn't matter what they have or what car they drive. It matters what they bring to your life.

3. With epilepsy, you must realize people will judge you. They may be understanding...but they will judge you after being there with you and seeing you go through it. Some people get weirded out and can't handle it. That's fine. That's not the kind of friend you need in your life. (: You need a support system. Not a judgement system (We've got too many of those peering in already!)

 

P.S. I hope, whoever you are reading this, that I encouraged you a little bit. My journey has been a hard one. But nothing is impossible. Epilepsy will not overcome you...its just a part of you, like a cold. It comes and goes! I just prefer mine to be gone. Although, I always try to remind myself that there are many things that could be categorized as 10x worse than epilepsy! So I count my blessings!

CURE epilepsy

Larissa Johnstone