Hellloooo everyone! Today is a grand day. It is Epilepsy Awareness Day! It's the day we are supposed to wear purple to support Epilepsy Awareness!
I have to remind my family every year that March 26th is the day we support the awareness of Epilepsy. It's not a holiday or anything, so that is okay. Today I woke up and put on a purple shirt I got from the Women's Expo years ago. It has some website written on it that I have never heard of, but it is purple, so I am wearing it. I also put on a necklace that my mom bought me a couple years ago. It says, "never never give up" and a bracelet she got me that has purple beads and a charm that is a purple ribbon. Really, only people with Epilepsy know about this day. That is just fine though, because I love having a day devoted to Epilepsy.
This morning when I told my father what day it was, he said, "Oh no, I'm not wearing any purple". He then went to his room and came back wearing a purple sweater.
Tomorrow is Easter and today my niece and baby nephew got to go out and find the candy the Easter Bunny left for them! That was fun. She and my baby nephew got a basket full of candy as well. The Easter Bunny thought of me too, and left me a basket. After the hunt, we all had breakfast. It was quite delicious.
This post is a little short, but I hope you all have a great Easter and Epilepsy Awareness Day!
Having Epilepsy. Having seizures. How could anything positive come from that? Yeah... I'm not sure, but I'm pretty sure there is something. Let's see.....
I've always thought that Epilepsy was a negative thing. There's never been anything good that has come from it. I mean, I've had seizures for seven years and there's never been anything jolly that's come from it. Never been a day where after a seizure, I've jumped for joy. I've never said, "Whoopee!!! That was fun! Let's do it again!!" It's nothing to be happy about. But, I've been thinking about this topic for the past few days and I have realized that even though having Epilepsy isn't something to shout for joy about, it's changed my life completely in every way. That is obvious, right?
When I was younger, I was super shy. I would cry over everything. My mom couldn't drop me off at preschool most of the time because I would start bawling. I would have to get dropped off by my friend and her mom instead. For the first few years of elementary school, I would get so nervous to go to school that I would throw up on the walk there. I've just always been a shy person.
In the sixth grade I had made some great friends, so by the time I got into middle school, I was set. We had amazing times and I loved being with them. I was also pretty dang confident in the seventh grade. However, a couple months after the start of eighth grade, that changed completely. I had my first seizure and that threw away my confidence. My friends started to treat me different, so I learned to not tell anyone about my Epilepsy, unless I truly had to. When I got into high school, my Grand Mal seizures were under control. I then only had Complex-Partial seizures. I would have them in front of my new friends and I would either pretend I didn't have the seizure, or on rare occasions, I would tell them. Either way, I could tell they were freaked out.
Anyways, my self-esteem was nowhere to be found. I had a teeny bit, maybe a 2 out of 10. So that was fun.
It was really in my Junior year of high school when I learned some important things. I learned that I wasn't the only one with Epilepsy. I met a few people at my school who also had it. Also, my sister had found a website that was all about Epilepsy and I was able to chat with others who had it. I learned that even though I suffered from Epilepsy, some people had it worse. I was in a class where I helped some students with disabilities. Some of them had Down Syndrome. Some had Cerebral Palsy. It really opened my eyes because even though I suffered like them, I didn't have it as extreme as their conditions.
Now that I suffer from Epilepsy, I empathize with others who have it as well. Whenever I see someone have a seizure, I know how they are feeling. I know how scared they are. Watching a seizure, I am not nervous like others are. However, before I started having seizures, I was terrified of seeing them.
I've mentioned this before, but my Junior year was when I became best friends with my best friend. That isn't something that has to do with my Epilepsy, but knowing that she accepts me for who I am and understands that I have Epilepsy, that is priceless. She doesn't get scared when I have a seizure in front of her. She simply waits for it to be over and because I have clusters of seizures, asks me if I am okay. I am so lucky to have found her.
It's interesting because for the first few years of having Epilepsy, I did not think my family understood it at all. I thought that since they did not have seizures, they didn't understand what I was going through. It made me upset at times when they would try to help me feel better. I was about 17 when I realized something. Just because no one in my family has seizures, does not mean they don't know I'm suffering. They have gone through hard times themselves. My family has their own health issues and though they are not the same as mine, they know what it feels like to have health problems. I know they love me and are always trying to help.
Something my dad told me really speaks to me. My mom and dad traveled to Cambodia in 2014 and my dad met a man who has a son with Epilepsy. Now. Cambodia is not like the United States. They do not have good health care and because of this, he is not able to get medications for his son. His son has to endure the seizures everyday. When my dad shared that with me, I could not believe how blessed the people of the United States really are. We have amazing doctors who can help us at any time. We are able to receive medications to help us get better. Though I have to take five medications everyday, three of which are anti-convulsants, I am grateful because if I did not have them, I would be having Grand Mal seizures everyday.
Another thing I am incredibly grateful for is my insurance company. Because of them, I am able to have these medications. If my family did not have insurance, we would not be able to afford my medications. I would not have the Extended Release of Trileptal (Oxtellar XR). I would still be suffering from double vision everyday. I am extremely grateful that my insurance finally accepted our appeal.
I guess there are some positive things that have come from having Epilepsy. I just had to look hard enough.
