Navigating High School with Epilepsy
I was born in Vasteras, Sweden in 2001, and started dancing when I was 4 years old. Dancing became a huge part of my life and was something I did 7 times a week from the ages of 10-15. I had been making lots of friends throughout my life up to this point. Some have stayed and some have moved on. School was also something positive in my life at this time. However, after living a happy and healthy childhood, everything changed.
In January of 2016, my seizures started. By spring of 2016, my seizures had started taking over my life. This was a confusing time for me because no one seemed to believe me. The first time I can remember coming out of my seizure, a childhood friend and I were having a sleepover and she had actually saw it happen. I woke up to her standing over me saying she never wanted to have a sleepover again and that something was wrong. This was when we decided I should probably get looked at by a doctor. We talked to my parents about what had happened. When speaking to my mom, she thought it was sleep paralysis. However, as time went on, the seizures became more frequent and I became more aware of them. For example, even though I didn’t yet know what was happening to me, I would wake up from seizures screaming and then sleep all day afterwards. Although the seizures had already begun to change my life, it was the diagnosis itself that would truly change everything.
It was in September of 2016 that I would be diagnosed with epilepsy. Wow, finally an answer! The story of how my parents found out that it was actually a seizure, though, is actually kind of funny. I had twisted my ankle at school and couldn’t sleep, so I went to my parents room to complain about the pain. I had ended up sleeping in my parent’s room and went to the ER the next day. While they said my foot was fine, I I ended up sleeping in my parent's room a couple nights after the ER visit and had a seizure. After not being believed by my own parents, they saw it for themselves. All I remember was my mom waking my dad and taking me to the children’s hospital. They could not tell me or my parents what was wrong because everything seemed normal now that the seizure was over. Then the tests began—EEGs, blood tests, MRIs, etc. Nothing showed up as a problem when the EEGs were on, though, and things got increasingly worse. That summer, I traveled to California with my family for vacation and, while it was a nice trip, I had a huge seizure while in Anaheim which must have been scary for my parents. Although it may seem like I can recall a majority of this story, I feel like I can’t remember anything from May to September 2016. This was around the time I started taking Trileptol. At first, I was doing great on the medication and was seizure free from October 2016 to September 2017. However, I began having breakthrough seizures from October 2017 to March 2018. After experiencing the breakthrough seizures, my care team finally found the proper dosage of Trileptol for me and I have been seizure free since 2018. The seizures ended up getting to be so bad that I had left school for a short period of time.
When returning to school in 2017, I ended up completing my last year of high school with everyone being a year younger than me. After completing my time at that school, I then went to a different school which was more like a trade school. This is where my passion for hairstyling started and my seizure freedom began. This is when I discovered Epilepsy Awareness Day at Disneyland and told my mom it was something we needed to explore. So off to Disneyland we went! After meeting so many people at the expo, it felt like epilepsy didn’t have to be so scary. In fact, I am actually still friends with some people I met all those years ago at the EADDL expo.
Since my epilepsy journey has begun, I have been able to live and navigate life pretty normally now that my epilepsy is controlled. I am even hoping to start lowering my dosage of Trileptol and eventually be off of it completely. As of 2021, I have graduated from high school and am working as a hairdresser at my aunt’s salon and am working towards working as an independent contractor through that salon. I have also learned how to start rebuilding friendships that were lost over 2020. I have also been able to be much more in tune with my emotions as well as those of others due to my antidepressants. After being fully off of epilepsy meds, I would be interested in looking at life possibly without my antidepressants, as well. The most recent things though that have been a part of my life since seizure freedom are traveling, considering living alone, and working on this non-profit.
The final thought I want to leave with the readers of this story is this: It gets better and easier as you begin to realize who is truly there for you throughout your journey. This allows you to be left with some prety special friends. Even after struggling as much as I did, I am so lucky to have found a community of people to surround myself with who truly understand what I have gone through. Lastly, being diagnosed with anything from epilepsy to ADHD does not have to feel like the end of the world; instead, try to view it as the beginning of getting answers and knowing yourself better.
