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Stop the Stigma By Hannah Dalinka

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Hannah Dalinka

One night, I was at my close friend’s Bar Mitzvah party (before COVID) when I heard the DJ yell, “Dance like you’re having a seizure!” The DJ probably meant that we should all dance “crazy”, but I was mortified, to say the least. This was not the first time I heard someone tell a joke about a seizure, but this was the first time it really hit me hard. I have a personal connection with epilepsy and this DJ had just joked about a serious neurological disorder in front of probably 200 people. I did not know what to do. I came home crying because of how upset I felt. My parents and I then contacted the DJ company. The people there were very apologetic and explained that they just did not realize how bad what they said was. I knew, from then on, that I needed to do something to end the stigma and “jokes” surrounding seizures and epilepsy.

In 2015, we noticed that one of my relatives started having, what we called, “space outs''. They would stare into space and their eyes would go blank. This family member was soon diagnosed with epilepsy. They had non-convulsive seizures, which do not involve the typical symptoms of a seizure that are portrayed in the media. Luckily, my relative was put on medication and has been seizure free for a very long time now. Unfortunately, my relative still does not feel comfortable discussing their condition because of all of the stigma surrounding epilepsy. They did not want people thinking they were uncontrollable or weird.

Epilepsy is a very common neurological disorder, in fact, as it states on the Epilepsy Foundation’s website, “More people live with epilepsy than with autism spectrum disorders, Parkinson’s disease, multiple sclerosis and cerebral palsy - combined.” In addition to this, 1 in 26 people in the United States will be diagnosed with epilepsy at some point in their lifetime. This number probably shocks you. This is because epilepsy is often considered a hidden disorder. Sometimes, with treatment and medication, seizures can be minimized or controlled. This disorder, therefore, is not as normalized as other, visible disorders. However, it does not make epilepsy any less real. 

I decided for my mitzvah project to not only raise money for the Epilepsy Foundation, but to also educate others on epilepsy to try and break the stigma. I realized, from the experience with the DJ, that some people just genuinely do not know how horrible it is to make fun of seizures and use that word in a joking way. I created posters and gave out booklets with tons of information about epilepsy. I also gave people some surprising statistics on the number of people living with epilepsy and just how many people are affected by it. I urged people to call others out when they make jokes about someone else looking like they’re having a seizure. I talked about how it is not okay to make fun of seizures, just as it’s not okay to make fun of someone with cancer or with Alzheimer’s. All of these are unchosen, unwanted, and serious and should never be joked about or made fun of. I felt that the more people I could spread the word to, the more epilepsy would be normalized and hopefully, I would be doing my part to break the stigma. 

I will admit though, it is hard to call other people out when they use “seizure” in a joke. I have been able to call out people before but just the other day, I was on zoom with friends and one of them was showing us a tik tok where the screen was flashing lots of different colors. One of the girls said, “Stop! Are you trying to give me a seizure?” She laughed and was clearly joking. To be honest, I was not able to call her out on it. This was a newer friend and we were in front of other people and I couldn’t pull her aside and talk to her on zoom. These things are hard. Also, this was not the first friend who has said things like that. I have heard both kids and adults, some who were even at my Bat Mitzvah, make fun of seizures. 

I feel guilty, still, about not being able to call my friend out, but that only encourages me to keep going in my efforts for breaking down the stigma surrounding seizures and epilepsy. People should not feel like they should need to hide the fact that they have epilepsy in fear of what others will say about them. I genuinely believe that a majority of people who make fun of seizures do not understand that it is a serious medical disorder and one that can not be controlled by someone’s free will. I will continue to educate others to make everyone more aware of seizures and epilepsy so that they will not use those words jokingly or to make fun of others. 

Thank you so much for hearing my story. I urge you to become more familiar with epilepsy and seizures. Learn about it, and educate others. Also, try to call people out when they talk about seizures in a joking manner. I know it is hard, but it is necessary in helping to make people living with epilepsy more comfortable. I will close with this: There were about 200 people at the Bar Mitzvah when the DJ joked about seizures. Using the fact that at least 1 in 26 people will be diagnosed with epilepsy in the US, I can conclude that 7 people had epilepsy or will have epilepsy in the future who heard that comment. That is not to mention people like me, who have family members, friends, or other loved ones who they know who struggle with epilepsy. The stigma needs to stop, and it will not stop unless we work together to educate ourselves and others. I also invite you to check out the Epilepsy Foundation’s website: https://www.epilepsy.com/. This is a great resource to use for finding tons of information about seizure disorders and epilepsy.

Hannah is a Sophomore at Glenbrook North High School where she is involved in theatre, student government, Relay for Life, and speech team. Additionally she is the President of Varsity Spartan Choir, the Vice President of Ladies First (GBN Show Choir), and volunteers as an ARC Tutor. Outside of school, Hannah is a songleader and on the Mahonick Leadership Board at North Shore Congregation Israel. She is also currently in the URJ Songleading Fellowship Program. Hannah is proud to attend JCC Camp Chi and is currently the Vice President of Chi Town Connection.

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