Life with Epilepsy

Happy Thursday everyone! This spring weather we’ve been having is quite the opposite of what we’ve hoped for and expected … but we’re Clevelanders — we can endure (most) unpredictable weather that comes our way!

I haven’t been on lately due to some personal life events over these last couple of months but I am finally able to sit down and write. When I was blogging the last time and going to post this entry, I was wrapping up the weekend and looking at what has been going on in my life and upcoming things on my schedule. I remember feeling dread when I realized my neurologist appointment was coming up. Going to the doctor’s office has never been an issue … but a neurologist appointment is a whole different story.

So since I had been talking so much about how significant epilepsy has been on my life, I might as well share how it all began:

February 9th, 2012 is a day I will never forget — it was the day that I found out that I have epilepsy under the most fearful circumstances. While driving home on the highway from my internship in downtown Cleveland, I start to see the world black out and shake. Next thing you know I wake up in an ambulance heading to the hospital. I was drowsy, confused and scared — being in an ambulance means some really bad has just happened!

After some CAT scans and hanging out at the hospital for a few hours, they come to find out that I have a cyst in my brain … which is pretty much located in a place that is inoperable.

GREAT, right? Also, I would rather them not operate on my brain thank you very much. So I decided that I would just have to live with it.

Most of that first year was spent trying to cope with it’s role on how I make decisions in my every day life and the possible consequences. I had to start taking medicine, which was odd seeing as I was never concerned about serious illnesses prior. I had just turned 21; it felt like my new and exciting social freedoms had been taken away. I was angry and ashamed for who I now was. Although I have been relatively open to share my story, I have been filled with embarrassment (less so than I did earlier on). Questions that I ask myself constantly — “How am I going to make it through a day without feeling embarrassed about epilepsy?” “Will I ever meet someone who will love me and want to be with me no matter what baggage I carry?” “Am I still able to do things I once was able to?”

Some examples of limitations that I now have are — Not being able to join the military. I was planning to enlist and become an officer but I can’t because it is a risk on others if I were to have a seizure. Scuba diving is out of the question because I could die in the water and potential risk to others as well.

I felt hopeless, lost, depression, anxiety and began to self destruct by not taking my meds and make any changes and ignore this new addition to my life.

People try to understand how I deal with every single day, often asking “How did you even survive the accident?!” (which mostly just shows up on their face/s) or “What is it like having epilepsy?” or even “How does it feel to have a seizure?”. I tell them this — I believe it is more than anyone can explain … it’s can only really be understood if you experience it. Epilepsy just becomes a part of you, it is not all of you. That is something I struggle with believing myself to this day but it won’t happen over night.

Since my decision to figure out how I want to live my life, I wonder how much I actually do know about my condition. Looking back on the last 6 years, I realize that I never was as good about taking care of myself as I should’ve been. One take away from this process is that education is power and when understanding and learning more about the things that play a major role in our lives, the better we can live a fulfilling and happy life. And this is something I am trying to figure out for myself — what is the equation to my lifestyle with epilepsy? Meditation? Exercise? Diet? Loving myself more?

By the way — my neurologist is amazing. She has been a great support and helping me move forward with my condition. And over time, I’ve come to realize that there are more people that know or personally are epileptic in the world that are able to openly talk about which certainly has put my mind at ease.

I hope this post has been helpful from a more emotional point of view. If people could read and comment on Facebook or on this post I would greatly appreciate it! Maybe even ask some questions you’d like to learn about epilepsy.

Thank you, enjoy the rest of your week and have a great weekend 🙂

 

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4 thoughts on “Life with Epilepsy

  1. Who needs scuba diving anyways. Thanks for sharing your story. I’ll have to read more about epilepsy. I read it back in February when they have the charity walk at the mall, but can’t really remember what exactly it is. 💗

    • Thank you :). Yeah I wasn’t able to go to that, it was just a walk to raise money and awareness for the Cleveland Epilepsy organization. But yeah please ask any questions you’d like!

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