Jordyn Salbe | Faces of Epilepsy

Epilepsy
March 8, 2018

Jordyn Salbe | Faces of Epilepsy

Nothing Is Impossible

The sun was a huge blazing balloon on the sky, burning down on the soccer field. I started to feel a dizzy sensation, then I got a feeling that I wasn’t conscious. It was a terrible reaction, very scary and embarrassing. My parents weren’t aware that I had seizures. It was quite a coincidence, but my pediatricians daughter was on the opposing team. People were shouting my name, but I just stood there with a blank stare. It was just like someone sleeping with their eyes open and you weren’t conscious at all.

My life completely changed, I went from being a cheerful child and not needing to worry about anything, to having to worry about pills and to tell parents that I just had a seizure. A couple days later, I went to see a neurologist to see if I was actually epileptic. My heart was racing like a rocket ship going a million miles an hour. When I walked into the doctor’s office I was terrified. They ran these tests that were trying to induce the seizures, by breathing heavy for three minutes and repeating things that the doctor said. I had two seizures and they wanted to do an EEG on me right then and there. An EEG, also known as Electroencephalogram is a test to see when and if people have seizures. I was frightened like a dog in a thunderstorm. I was entering the EEG room when they told me to lay down on the white, cold, and enormous looking hospital bed. They started by putting on these suction cup wires that were monitoring my heart and brain to see if and when I was having seizures. The test started off with the doctors telling me to breath heavy and having to remember a color and everytime they say the color I have to repeat it. Many of those times I didn’t repeat it and that was a sign that I just had a seizure. Another test that they also ran was putting an extremely bright strobe light to my face and every 10 seconds it would increase speed… I also had seizures then.

The neurologist said “Sir, your daughter is epileptic” and that’s when I broke down in tears. They told me that I would have to be on medication starting off with 2 pills, then increased to 4 as I grew and gained weight during these next couple years. Also, they said that I would have to be careful when going into pools, oceans, and using devices such as computers, phones and almost anything I do. From that day on, school was different, and I felt like an outsider when it came to friends because I assumed like they were going to treat me differently. I was miserable for the first three months of me being diagnosed. All that was going through my head was why me, out of everyone in this world it had to be me. I just couldn’t get over this and it was a major struggle for me. I had to start worrying about if I go out will there be strobe lights, will I be home late, do I have to pack my pill. I had to think about all of this without making it obvious to my friends, meaning I didn’t want them to find out.

Finally, six months late I started accepting my diagnosis. I still didn’t tell many friends but I told people who needed to know. Each and everyday I took another big step, either taking my pills on my own, or actually wanting to talk to my parents about my diagnosis. The major impact that helped me through my extremely difficult time is my family. They were the ones there for me everyday when I first found out I was epileptic. And even now, they support me in everything I do and guide me the right way when it comes to making decisions as to if I should do something. I couldn’t ask for more, ever since my diagnosis they always had my back whether it be with school, soccer or just going out to a party. As the time went on, I started to accept it, by me personally telling friends or starting to do things for myself. One major thing that impacted me was how accepting my teachers were to me, they would do anything to help me achieve more.

When I finally told my friends, I realized that they did not perceive me as anything different, but was proud to be educated about the disease. They would ask questions and care for me so much. By the time my Bat Mitzvah came around, I was pretty open to just about everyone, meaning friends and teachers about my story. What really brought me out of my shell was a morning speech that I read at my Bat Mitzvah. The whole time my heart survived was beating through my chest, but I got through it and now feel better, knowing that people know. Especially in middle school, since I have so many teachers, it is tough for me to tell them when I have a seizure since it still happens frequently on medication. It feels as if I was sleeping with my eyes open not know what I am doing and not answering if anyone asks questions. I feel embarrassed if a teacher tells me to close my computer or if a teacher gives me notes, but in reality that’s what I need to succeed. I am thankful that they care about me and take the time to do this for me.

The most meaningful thing that I learned throughout my unpleasant journey is that nothing is impossible, though it may look like it is. It will eventually get easier especially with the help of friends, teachers, and family. Something that really brought me down but I’ve learned how to work with it is when I got my first, three day EEG. All I was thinking was why me. Recently I have been getting several tests done because we found out that I have been having ten seizures a day. It has been a tough year, and now my medication is starting to get controlled. Today, February fifth, I am so much more accepting of this disorder, sometimes it still brings me down but never like it did when I first got diagnosed. Thank you everyone out there for the help and support.

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