By Marissa Ogea
After twelve years of living with epilepsy, I feel like I would have a slight grasp now on how to speak about it when asked to share my story– so bear with me. I was diagnosed with Benign Rolandic epilepsy sometime in 2009 after a series of grand mal seizures along with recurring tonic-clonic seizures. I just threw a lot of terms out right there, so let me give a little run down: epilepsy is a neurological condition that affects the nervous system. Tonic-clonic, also known as grand mal, is a type of generalized seizure, which can also be characterized by saying the seizures I experienced were focal onset, meaning I had an impaired awareness while I was having an active seizure. I like to think of myself as an epilepsy dictionary every now and then when I talk about my medical history.
Although I’ve had epilepsy longer now than not having it, it feels strange to look back and speak about my struggles or to acknowledge the challenges I endured because of my diagnosis, because it was something I really had no choice in. My brain doesn’t work in a “typical” manner, something sort of just went off one day, which we are still unaware as to what caused my epilepsy, but I’ve had to just roll with the punches my mismatched brain patterns have thrown at me.
At first, and up until recently in all honesty, I wasn’t as vocal as I currently am about my epilepsy, because I didn’t want others to view me differently because of it. I refused to acknowledge having epilepsy until it was absolutely necessary– teachers flipping lights on and off to get our attention in class, videos being played with strobe lights, etc. that forced me to address with my teacher, despite having already filled out the big yellow packet of medical information from the front office every single year in high school. I was always followed in this interaction of informing my teacher of my epilepsy with “I would have never guessed you had epilepsy! You don’t look like you have it, so I didn’t know!”, which I always dreaded hearing. Comments like that still stick with me because what does that even mean? “You don’t look like you have it, so I didn’t know!” It’s not a condition in which a label would magically appear and be plastered on the middle of your forehead for the world to see. I wanted to reply with comments about them not looking like they’re having evident marital issues, but it wasn’t my place, and neither was their comment about my epilepsy. I refrained from speaking about my diagnosis because of the ignorance that was shown to it, especially when no interest in learning about epilepsy was shown. Moments like this from friends, family, and school staff members hardened my heart a little bit because it felt like a part of me was no longer Marissa, it was my diagnosis, and that wasn’t in their realm of interest when it was such a large part of my life.
I believe the lack of information about epilepsy is the real bone I want to pick. The number of conversations I’ve had since my diagnosis with people in complete disbelief of my condition and its effects on me is alarming. One in twenty-six people in the United States will develop epilepsy at some point in their lifetime. I feel like that statistic has stuck with me the most these past twelve years because personally, epilepsy has felt so isolating. Every slumber party I was invited to, I had to give my friends a brief demo before we watched High School Musical on what to do in case I had a seizure. I had to “doctor” myself at the pre-med student age of ten years old whenever I noticed any changes in my behavior, sluggishness, daydreaming, splitting headaches that would lead me to document when those occurred so I could give my neurologist all of the information I could, which would result in the usual MRI, EEG, or medication alteration options I always hated. Epilepsy is not a condition many are aware of, and as we reflect on November being National Epilepsy Awareness Month–even though we should be providing awareness to epilepsy every day– discussions on what we can do for those living with epilepsy, the ones who are battling a million tiny battles each and every day due to other conditions along with their epilepsy, and for the community as a whole.
I am extremely lucky to be in the position I am in, and I will never take that for granted. I just celebrated being eight years seizure-free in June 2021, I have been off of medication since 2017, and I have become far more comfortable about speaking about my journey with my epilepsy. While I was having active seizures, a constant fear that ran through my mind was the future. What would my life look like now? Would I be able to move out for college? Will I be able to be somewhat independent without my parents? Will I have to go through an EEG (a test that detects abnormalities in your brain waves, or in the electrical activity of your brain) again? Thankfully, I haven’t had to have an EEG, which is the actual worst, in years. My independence is stable, besides the countless number of times I call my mom throughout the day. And I’m about to enter the second semester of my third year here at Michigan State, about an hour and a half away from home. My journey is far from over, but diagnosis isn’t the barrier I once thought it to be.
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