Feeling the Judgment
by: Melissa Kavolius
I was 17 and in High School when I had my first seizure in 2006. I had a really stressful week at school because it was during testing time. I came home from school with a terrible headache, told my mom about it and we both wrote it off as stress and all the thinking and studying for my tests. At dinner that evening I was sitting down in a chair holding my plate of food when I suddenly dropped it to the ground, fell on top of my plate of food, and started convulsing. That was my first ever seizure. My mom didn’t know what to do and called my grandma and then I was taken to the hospital. I had another seizure after I got to the hospital. I was diagnosed with Epilepsy that year.
I remember during the hospital stay the staff was getting ready to release me. My mom was trying to get them to keep me because she was worried. I went into another seizure and my mom said my head spun around like the girl in the movie “The Exorcist” and I grabbed ahold of the bed. Needless to say, they kept me for further monitoring at the hospital and put me in the pediatric ward to better monitor me.
We didn’t know where to turn or who to go to for help. My aunt was actually the one to suggested reaching out to Epilepsy Alliance Florida and seeing if you could help. This was in 2010.
I have since been able to utilize the Medical Services Program. I would never have been able to get the treatment and care I have had access to without Epilepsy Alliance Florida. I would never have had a way to get my medications. Epilepsy Alliance Florida has helped me a lot.
Having access to my case manager has also really helped me open up about my epilepsy. I am WAY more comfortable talking about it with others. I have struggled with being judged because of my epilepsy but now I feel more capable of explaining my epilepsy to them. Because of my epilepsy, I often have issues walking and in big stores, I need to take electric carts or I will fall. People will give me side-eyes or judgmental looks for being younger and looking physically able because they can’t see my disability. I will always have to deal with judgment but Epilepsy Alliance Florida has helped equip me to handle that. I will always have to deal with the stress and anxiety of having epilepsy but am able to be more open about it.
In October of last year (2020) I was put on the Extended Release version of my medication and I haven’t had a seizure since. I previously was having several seizures a month.
In the future, I am striving to have a better attitude and be a better person. I hope to find more friends who are understanding of my condition. I also hope to gain complete control over my seizures.
I hope one day they find a cure and no one has to live with this condition ever again.