Epilepsy is a spectrum disorder, similar to Autism, in that it presents differently depending on each person and their seizure disorder. There is a stigma surrounding epilepsy that often leads those who have it to suffer in silence and feel very isolated. I know I sure did, but thankfully, I broke free from that isolation and decided to try and make a difference with what I was given.
I was diagnosed with epilepsy at the age of six. When I was in utero, the doctor suspected that I had developed cortical dysplasia. Most of the time, the cause of someone developing epilepsy remains unknown, and the doctors are unsure if this played a role in my diagnosis. After my mother received a call from my school informing her that I had a seizure, my journey began. Over the next six years, my family, my neurologist, and I worked to find a treatment to control my seizures, requiring many tests—far more than I can even remember. I have been on almost every antiepileptic medication, and none of them seemed to work.
At the age of twelve, I underwent my first of many surgeries. The goal of the surgery was to remove the location where my seizures were originating. It was somewhat successful; after the surgery, I was seizure-free for a year, but they were not able to remove it all, so my seizures returned. At this point, I accepted that I was going to be “broken” and “unfixable’’ forever. I was bullied in school because of my condition, and eventually, my seizures became so severe that I needed to switch to homeschooling. I was in a very dark place mentally, being isolated in my room, taking classes, and not being able to make friends or talk to someone who understood. I didn’t know there were people who understood.
A handful of years later, my neurologist and I went back to the drawing board to explore what options I had left. We decided to implant a neurostimulation device known as the RNS. This device sends the proper amount of electricity to my brain to prevent seizures or decrease their severity. This device requires many adjustments that my neurologist can make from his computer, but the hope is that one day we’ll find the right setting for the device, and I can start tapering down some of the medications I’m on. Throughout my life, I chose to disconnect from epilepsy organizations, epilepsy awareness walks, and even from wearing the color purple. I absolutely hated it, to be honest. I wanted to get as far away from accepting this condition as I possibly could.
But thank God, I never had to go through any of these things alone. I had an amazing support system in my mom, dad, older brother, neurologist, and extended family. Yes, I have been through a lot, but I knew that I was not the only one going through it. My support system was always there for me, and all I went through affected them just as much as it affected me. They were always there to pick me up and dust me off when I just felt like giving up. Who I am today is because of my amazing support system.
With some time and reflection, I realized that this condition is not going anywhere. It is part of me, and I might as well make the most of it. From then on, I started organizing fundraisers for epilepsy awareness, participating in epilepsy walks, wearing the color purple proudly, and educating others who may not know about this condition or may not be familiar with seizure first aid. I started advocating for those individuals and families with epilepsy, as well as advocating for myself. Now, I couldn’t imagine doing anything else with my life.
Throughout this entire journey, there have been numerous struggles, such as mental health issues, not being able to love myself and see that I have value even with epilepsy, memory problems, not being able to retain information in school, feeling isolated from people, getting frustrated over things I’m unable to do, having to rely on others, and just wanting to be independent but feeling like I never could be. Today, I work for an epilepsy organization, I have numerous friends who have epilepsy, and I know that they truly understand. I have accepted having to rely on others for certain things, and I am independent. I have my own apartment, pay my bills, get to where I need to be, and simply enjoy life a lot more than I used to. I no longer feel isolated like I once did when I was stuck fighting this condition rather than accepting it. I have learned through my journey that I have value, and I know that epilepsy is only a part of who I am.
Written by: Anna Diaz
