I know I can start throwing out statistics and bore you with them but I'll just tell my story instead. I'm a 25 year old girl living with Juvenile Myoclonic Epilepsy. Pretty much this is a fancy way of saying I have a type of epilepsy that develops later on in teen years, well at least for most people, and some people can grow out of it, others can't. I unfortunately was part of those who can't grow out of it.
I was diagnosed my senior year of high school back in 2005. My first seizure (I sometimes refer to this as an episode for those of you who aren't familiar with epilepsy or seizure disorders) was the morning of my senior rafting trip. I was so excited for it and all I remember is putting in my earrings and the next thing i was waking up in my bed a few hours later. I had asked my mom what happened, or how I even showed up in my bed and she said i must have passed out from being overly tired. Of course no one thought anything of it because anyone can pass out or faint from being tired and too much adrenaline from being excited.
My parents and I weren't concerned until this happened a second time. This was the morning after Project Graduation. I had been on the phone with one of my friends after a night of not sleeping and a little upset and the next thing I remember is my brother attempting to pick me up of the floor and the pool of blood I was in. This was back when cell phones weren't as popular and people still called house phones. Well my friend said she had heard some strange noises coming from my end of the phone halfway through our conversation that she called the house phone hoping someone would pick it up. My brother was the only one home and when I seizured I fell, hit my eye on the bed post which gave me a black eye, I bit my tongue so hard that I was bleeding all over the notebook that was on the floor and on the fall down I bruised my whole entire forearm.
After that episode my parents took me to the regular family doctor. At the end of the visit he told my parents and me that I have to see a neurologist. We started to worry because this was a specialist that I had to see and neurologist, what could possibly be wrong with my brain? After doing numerous tests, blood work, EEG's, being monitored for 48 hours, we were given the final diagnosis. "You have JME which is Juvenile Mycolonic Epilepsy." My mom had told me a few years later that this was the first time she saw my father cry, that he didn't even cry when his father passed away. I guess it's because I'm Daddy's little girl and he couldn't do anything to save his little princess from the evil demons. I don't even want to know what went through my parents minds when they were in that room with me. All I know is the thought the went through mine, "My life is over. How could this happen? Why me?"
That very same doctor that diagnosed me decided to start exaggerating and scaring my parents. He kept saying that my younger brother was going to get the same diagnosis, and at the time he was 11 years old. Needless to say no one liked this doctor including myself and we were really lucky to get an emergency appointment with one of the best doctors on the East Coast at NY Columbia Presbyterian. He made me feel like everything was going to be ok. He explained my condition with both myself and my parents. He was genuine when he told me I could live a normal life I would just have a few things to watch for. His whole approach to the situation was very professional but with a heart. He told me good news and bad news, but he didn't scare us.
Once I left the office I felt so much better. I still thought how I couldn't do normal things people my age did. People my age were going off to college where they could stay up all night and go out and have fun. Unfortunately I had my license taken away for a little while so I had to stay home and go to school close enough for my parents to be able to drive me. As a freshman at Centenary College in NJ I was being driven to classes by my mom and dad. I felt like I was such a "loser" but I knew I had no choice.
I was very angry at one point and started to rebel. I would go out and lie to my parents about where I was and I would be somewhat reckless. Well reckless by a person living with epilepsy. I started to stay up later and just not care anymore. The feelings and thoughts I had running through my head actually make me laugh right now. I was so immature and so hurt and trying to blame someone or something for this. There is no one to blame in this situation, not even yourself. You just have to learn to live with epilepsy. It's not a death sentence, it's a condition.
I eventually grew up and started taking care of myself. I realized what I had done before was not worth it. What would happen if I had a seizure around people who didn't know what to do or people who were drinking and didn't want to get caught so they would just leave me laying there? I decided that I can't do that anymore, I have to be responsible. I got enough hours of sleep, I started to hang out with a different crowd and stay home a little more. I did things like go to the movies or go shopping instead of going out to a college party or staying up all night.
In January of 2009, I had my first episode in four years. It had all been because the pharmacy gave me the generic version instead of the regular brand name medication. So I had to take it easy, yet again.
Since then I have taken care of myself and I have gotten my Masters in Business Administration and have finally scored what I like to call my big girl job. I've become very successful and it's not just because of hard work. It was to the help of my family and my parents who at one point I thought my condition would break up the family but they stuck through it and without them by my side I would not be where I am today. Sitting here typing this blog actually sitting next to both parents with my younger brother studying at Boston University and life is only going to get better. There is hope, and there is life with epilepsy, you just have to be more cautious than the healthy human being next to you.
Like I said earlier living with epilepsy is not a death sentence it is a condition, only if you believe that you can keep on living with a positive attitude.
No comments:
Post a Comment