As a fifteen-year-old, I had my very first seizure. Being only fifteen, I was terrified to tell anyone. I thought these kinds of things would mark me as “weird” and that none of my friends would treat me the same. Because it was something I had never been exposed to before, I was destined to tell only the people that absolutely had to know and made them swear not to tell anyone else. I followed my rules closely: no driving for six months and take my medication on time and as directed. Now this wasn’t that difficult for me… it was a secret. The difficult part: I had been diagnosed with epilepsy.
There were many ups and downs of the early part of my journey. I had a doctor that wasn’t listening to me and I was gaining weight regardless of hours I was spending in the gym and the calories I was eating. On top of all of this, the side effects I was supposed to be having with my medication weren’t happening. The exact opposite was happening. Frustration a way to describe the way I was feeling at this point. Being in high school and dealing with weight gain and extreme side effects takes a toll on your mental health, especially at such a young age.
After changing medications, I had a much easier time and started to do better. Or so we all thought. I moved on to college at Missouri State University, just an hour an a half away from my family. It wasn’t until my junior year that I began to have issues.
In March 2019, I hadn’t eaten all day and decided to bring my roommate lunch. Expecting to sit with her, eat our Chinese food and watch the lacrosse game she was working with her, I sat down with her to eat. The next thing I know, I’m waking up on the floor with a blood pressure cuff on my arm and staring into the eyes of a paramedic. I had just had a seizure and broke the 5-year seizure-free streak I had going. Due to my blood sugar being drastically low even after eating, my seizure was blamed on my low blood sugar. I was told by my doctor to try to stay on a consistent eating schedule, even if it meant snacking frequently throughout the day.
Almost exactly a year later in March 2020, I had basically moved home due to the COVID-19 pandemic. The pandemic had forced my last semester of college online. When reading something on my laptop, I noticed my vision starting to blur. So I closed my laptop, wrapped it under my arm and started to walk to my room to grab my glasses, hoping this would help my vision. Except I didn’t make it to my room. Like the last time, I woke up to a paramedic and a blood pressure cuff on my arm. This time, I had two back-to-back seizures and it was clear that my medication was not working correctly.
Through all the scans, tests, and lots of trial and error, things haven’t been easy. I have learned a lot, especially when it came to navigating this mainly as a high school and college student.
Threw myself into the word of God
After my diagnosis, I always felt like an alien. I didn’t know anyone else that had been diagnosed with epilepsy before, so to me, it seemed very abnormal. I cried a lot after my diagnosis. It felt like I could never live a normal life again. Even though I have to be careful with certain areas of my life, it’s not so hard for me anymore. However, like anyone, I still have those days where I feel horrible about it. I have to give myself constant reminders that I’m not the only one with this issue. Continuing to tell myself that it’s in no way a roadblock helps. I constantly tell myself that God wouldn’t give me something that I couldn’t handle and it helps me a lot!
Communicated to those around me
With epilepsy, communication had to be key. It’s not that I didn’t want to tell those around me, because I did. It’s just that I felt that they would treat me differently. When I began to tell people and found that I actually wasn’t getting treated any differently, I saw that communication actually needed to happen, especially if I was going to be around certain people a lot. If I wasn’t communicating to those around me, I was going to get treated differently. I was going to allow my friends and family to feel like I didn’t trust them when I really did.
Reminded myself to pay attention to others around me
As weird as this may seem, I needed to get myself out of the pity party I was throwing. According to Healthline, epilepsy is the fourth most common neurological disease. Every year 150,000 Americans are diagnosed with a disorder that can cause a seizure. Over a lifetime, 1 in 26 Americans will be diagnosed with epilepsy. Neither of these statistics I knew, and it normalized my disability for me. While there are still moments that make me feel small, it’s nice to be able to look around and not feel alone. It’s a nice reminder that I’m not alone in my experience with epilepsy.
Found my inner strength
It sounds cheesy, but going through something like this is very emotionally challenging. I am not someone who handles emotionally-charged challenges very well. However, I can honestly say that my diagnosis has made my personality do a 180-turn. I handle things like this much better now! Things can still get to me, just as it would towards anybody. Finding my inner strength was the best things I ever did for myself. It has really served me well in many aspects of my life!
Made sure I was following the rules
Little disclaimer, I’m pretty good at following the rules to begin with. However, going into college, it began to get really tough for me. One of the cardinal rules when you’re epileptic is trying to limit your caffeine intake. Caffeine and college pretty much go hand in hand, and I really love lattes. Like a lot. You also have to try to eat a pretty balanced diet and get plenty of sleep. See where I’m going with this? It was ROUGH. I seemed like the grandma of my friends because I had to be. Being epileptic didn’t give me much of a choice because so many factors can cause seizures. I had to limit as many of those factors as possible, but I’d like to think I did a decent job.
This is something I will have to battle for the rest of my life. It’s not something that’s easily fixed with surgeries and treatments like other medical conditions. Unfortunately, it’s not that simple. However, I have come to terms that I can still have a normal life as long as I’m doing what I’m supposed to. That’s enough for me and always will be.
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