When My World Changed: The Day of My First Seizure
Last updated: December 2022
I remember the day of my first seizure like it happened yesterday. I remember sitting in 1 of my college classes, October 2014, listening to my professor go over social prejudice. I remember her dividing us into groups so that we could discuss any prejudice that we have faced in our lifetimes. I remember suddenly getting up from the group and walking out of class.
My first seizure at school
I remember sitting outside the room on a bench, moving to the floor, going to the bathroom to get a wet towel to put on my neck and face, and returning to the bench. Students passed me by and I must have looked at how I felt because each student would ask if I was okay or if I needed help. I remember telling each one that I was okay. Then a classmate walked out and asked the same question and I can remember looking at her and telling her something was wrong, I told her to get our professor, and to call 911. At that moment I knew something wasn't quite right.
The next thing I can remember is coming to with students, staff, and medics surrounding me. The medics very quietly explaining to me that they had just witnessed me have a seizure and that I would need to go to the hospital.
The next few days were a blur as I was admitted to a hospital 6 hours aways from my own home and family. Doctors monitored me continuously and pumped me full of seizure medications to ensure that it would not happen again. After a few days, I was discharged and back on the college campus as if nothing had even happened. I returned to campus with the mindset that it was a fluke and would be my one and only seizure. But man, was I far from wrong.
Ongoing seizures and a life-changing result
The rest of the semester I would go on to have as many as 30 seizures a day. I spent so much time in and out of the hospital, it felt like my second home.
Through all of this, the one thing I was beyond proud of is how steady my grades had stayed, especially knowing I was coming up on finals week. I did not want to fall behind in any way as a student. Until one day, my world changed.
It was not a seizure that turned my world upside down but, instead, a college administrator. She decided that my health had become a distraction to other students and that it was not fair for them. I was told that I had no choice but to medically withdraw from the college until the next semester. I was young, naive, and honestly had no idea that I had legal options here.
Forced out of college because of my seizures
I was not aware that they could not force me out of school due to a medical disability beyond my control. I had not yet learned about disability services on campus or the Americans with Disabilities Act. And so, 2 weeks before I was to take my finals for my sophomore year, I was sitting in the dean of students' office signing paperwork saying I had 24 hours to leave campus. Signing paperwork that explicitly said that I was being withdrawn due to my health.
I was told that come January, the following semester after winter break, that I was more than welcome to return as long as a doctor cleared me to do so. So that is exactly what I tried to do. I spent the break getting my health in order, seeing doctors, and ending the break with a doctor's note stating that I was in a condition that would allow me to return to school.
I contacted my administration and sent them the letter in which my doctor stated I was in a good place to continue my education. I provided the doctor's note and my doctor's information and even provided my diagnosis and treatment plan. But was that enough? No, no it was not.
I was told that they were not going to accept me back on campus that semester and that I should try again the following semester. So again, that is exactly what I did. I kept a part of my heart open and hopeful for the chance to continue my education at the only college I wanted to attend. Just for the administration to shut the door in my face multiple times over something I had absolutely no control over.
I wish I new my rights back then
As if being 19 in college, perfectly healthy, and striving in clubs and classes was not hard enough. I was thrown the curve ball of beginning my epilepsy journey and instead of supporting me as a student, they told me I was a disruption and kicked me to the curb.
While I was just beginning my life with epilepsy and seizures, medications, and side effects. I was learning a whole new normal. Back then I did not know anything about advocating for myself or even that I had rights. I had yet to build the support system that I have now, the ones who would fight tooth and nail for me.
If I could change anything from 2014 it would not be the fact that I started having seizures, but instead, I would have stood up for myself more. I would have told the college that someone's health condition is not reason enough to kick them out of school. I would have educated staff on ADA rights.
And I would have told myself over and over again that none of this was my fault and that I deserved more! I would have told myself that epilepsy is just a small part of who I am, not the whole picture.
Do you have epilepsy? Or are you caring for someone with epilepsy?
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