In eighth grade, I woke up in an ambulance when I should have been finishing a math test. I looked at my mom, so confused as to why I was being treated like a patient in a medical TV drama, but as my brain fog subsided and I took in my mom’s tears, I realized this was my new reality.Â
My epilepsy diagnosis came as abruptly as it did unexpectedly. No family history, no prior seizures, nothing to indicate anything wrong. Of course, when it decided to show its true colors, it made a public scene, embarrassing me in front of my whole math class. One of my classmates (allegedly, how would I know?) ran down the hall, announcing “some girl just had a seizure” through every open classroom door. A friend of mine was able to think quickly on her feet using her skills learned from the well-accredited “Grey’s Anatomy.” Using her TV-trained medical emergency seizure first aid, my friend made sure an ambulance was called and made sure I was safe during the seizure. Unfortunately, she was pretty much the only one who knew that much about seizures, including me. That day, consisting of an emergency hospital visit, CT scans and a lunch of two graham crackers and peanut butter (all the hospital could muster, apparently), would be the start of a very long journey getting to know my epilepsy and how to overcome it.
I spent a lot of time trying to run from my diagnosis; for half a year after my first seizure, I refused to entertain the idea of this being a long-term issue. Maybe it was just a one-time thing! Besides, you cannot have epilepsy after only having one seizure, right? Turns out you can. Epilepsy is diagnosed not just by repeated seizures, but also through neurological exams, brain imaging and EEGs (electroencephalograms). As it happens, an EEG told me that there was a raging party going on in my brain without me even knowing, leading to excess neuron firing and seizure activity, prompting my epilepsy diagnosis. Despite this, I was still able to secure my license, like any 16-year-old dreams of, a few years later.Â
This proved to be Fool’s Gold, just a tease, when my seizures returned a month later, and in larger quantities. My sophomore year alone, I experienced seven tonic-clonic seizures. Not only were these physically draining, but they took a toll on me emotionally and mentally. I struggled to move on from each event, facing postictal depression, a period of emotional symptoms lasting up to five days after a seizure that made me not feel like myself, along with brain fog and constant anticipation of the next event. My license was placed on hold until all seizure activity subsided, which felt pretty much impossible, and my life felt like it was completely out of my control.Â
As if that was not enough to worry about, it seems that no one knows what epilepsy really is, nor do they care to learn. You would be surprised how many epilepsy jokes people make on a day-to-day basis, saying things like “Oh my gosh, those lights were flashing so much. I almost just had a seizure.” Mhm, sure. People who know about my epilepsy continue to joke about it; I mean, it is not a pretty sight, so I have to worry about what is said about me while I am unconscious. People mistake postictal depression and exhaustion for moodiness, making it difficult to feel validated in my experiences and feelings. The “invisible” part of epilepsy is what makes it so challenging. Others easily overlook the fact that your own brain is sabotaging you.Â
As these experiences became more frequent, I came to terms with the fact that my epilepsy diagnosis is not going to disappear: it is a part of me now. I mean, it sucks, but what can I do about it? I pushed myself (and keep pushing myself) to quit sulking and dwelling, as if that mindset will make me any less epileptic or undo a seizure. I became an active member in the Epilepsy Foundation of Missouri and Kansas, attending events as a volunteer, joining the Teen and Young Adult Board and interning over the summers. I learned how important it is to support the people who live these kinds of experiences beyond a diagnosis. Through this work, I acknowledge and accept my own experiences and feelings while helping create a safe space for others to share their journeys as they manage their own trials of epilepsy. I earned the Family Epilepsy Joe D’Souza Memorial Scholarship for sharing my story and goal of turning my experience into growth.Â
The seizures continue to occur, and they continue to suck — duh. Do I wish I could drive or not have to take so much medicine every day? Of course I do. But I do not spend much time mourning the version of me that does not have epilepsy. It can hurt, and it can be really inconvenient, but my ongoing journey with epilepsy has taught me so much, especially about myself. I cannot change that epilepsy is a part of me; all I can do now is reclaim the driver’s seat, even if it is not in the physical sense.