I do not know anything different then life with Epilepsy, having been diagnosed at two years old. In recent years, I have been diagnosed with intractable epilepsy, which has me changing meds frequently, and in and out of hospital to gain control. The side effects can be the worst! When I was in public school (homeschooled now) there was often struggles. The teachers were great, but some students didn’t believe seizures were real and that was hurtful. I did not say anything as it is difficult to explain what a seizure is at a young age when you don’t even fully understand it yourself. I had a grand mal seizure in that class, in the presence of the girls that didn’t believe seizures were real, maybe they believe now! I think there is also people who are willing to help, just may not know exactly what to do or say. Things can be taken wrong when they are meant to help. Having a seizure in front of crowds of people, or crowds of people coming around to see and help is what bothers me most. It bothers me because it makes it harder for me because I get embarrassed. A calm, quiet, and reassuring place with just a few people is what I prefer. Though I cannot control these aspects, these struggles are real. I feel like no one understands, like it is an invisible disease, but it is not!
As a teen, watching people get thier drivers licenses or going to concerts and dances is tough because all those things are very difficult to do with my seizures. It is tough but important to find friends to do the things you are able to do. Often the friends that stay are the truest friends of all, because they will give up that 3D movie to see the basic movie with you. They are also very understanding. Sometimes, I can’t answer you and often it’s difficult to go out, because I’m not sure if I’ll have another seizure.
“Am I okay?” is a daily question, something to push through, even when I don’t feel great. My mom has same epilepsy as well, so it keeps our family running. Also, it gives me an understanding that not everyone with epilepsy gets. There are times in life my mom can tell me a comparable story and it makes me feel okay. I know she understands completely. My dad and sister are great supporters. Sometimes epilepsy interrupts their plans but they always make the sacrifice to take care of us. Sometimes that makes me sad for them as well. If I could say anything to anyone about life with epilepsy, I would say “don’t quit!”
For me, keeping my faith is key. Although it’s hard to do at times, it is a source of strength. We are currently waiting for genetics to help diagnose the exact cause of my epilepsy in hopes of finding right treatment for both my mom and me. We tend to be a copycat case, they believe we may have a rare type of epilepsy. I can’t wait for answers, instead of having to experiment with different drugs. There is a song my parents have been singing to me since my very first EEG. Part of the song says “you are a great big bundle of potentiality; you are a promise to be anything God wants you to be. I’m still discovering me. Shine your light, a smile brightens someone’s day. Be yourself because that’s exactly who you should be.”
Epilepsy is part of your story (not who you are). I think the challenges teach us to be kind and to not judge. You never know what someone is going through. I have come to the conclusion there is no normal. I think that was in a Percy Jackson song and I agree! “Normal” is defined from everyone’s unique outlook. No one is the same, even in the world of Epilepsy. We will all experience different auras and challenges. We get to choose how to handle it. I need lots of help right now but choose to see the good things in each day. I pray for a cure for Epilepsy and all illnesses. Until then, be strong, have courage and strive each day to achieve that!