Like a lightening storm in the brain

Warning this blog post may be triggering for those suffering through depression and anxiety.


One of the first things to know about epilepsy is that it does not discriminate based on age, sex, or race. It doesn't care about your dream of becoming a pilot, an astronaut, or a scuba diver- all of which you cannot do if you have epilepsy. It completely ignores your attempts of independence and freedom, and decides to obliterate your wallet- no matter your economic status. It is a cruel, incurable disorder- though I consider it a disease- that no one wants to talk about.


Though it cannot be caught by being close to a stranger like the flu, this disease has caught me. Since eighth grade, I've been on a cocktail of different medicines to push it back into the dark recesses of my mind, but every couple years the disease rears its ugly head- usually just as everything in my life is starting to go right.


After graduating from college and moving across the country- while being controlled (on meds without seizures) for five years, I thought I had finally succeeded in life. I had independence and freedom. Then, the seizures regularly began. At first, I told my parents about them, but after my umpteenth trip to the hospital for having yet another seizure, I stopped telling them. Why?


The disappointing tone of their voice was deafening. "Why and how did this happen?" and "Were you taking your meds?" I was automatically guilty for not being able to control my mind and body. I couldn't stop the thief from taking control. The conversations would usually end with the statement, "You need to come home." That statement. Right there. "You need to come home". That made me shy away from telling them anything. Epilepsy already made me a prisoner within my own body; I didn't want to be jailed in isolation from my new life as well.


While sitting in a hospital bed, waiting for tests to be done, to hear about the next drug I would be given, and for the x-ray results to see which bones were fractured- which has happened on more than one occasion-, I was terrified of what I would tell my friends, coworkers, and boss. I felt isolated even though I was surrounded by people. I was terrified of the burden I was going to share. Why?


Because on more than one occasion, my friends and coworkers have cracked jokes about "having a fit". More than once growing up, a kid mimicked having a gran-mal on the playground. Though these were said in passing, probably not even thought about once after the joke was made, it stuck.


I decided not to tell anyone save a few people, one of whom was the guy I was dating at the time- this totally backfired. Because of this, my love life became non-existent; always keeping things shallow and fun. The moment things got serious, it was over. I told myself I would never become pregnant or give birth because my epilepsy is genetic. I refused to give someone else the pain, heartbreak, and limitations of the same disease I grew up with. I grew more jaded and bitter as memories- both long and short-term- vanished into thin air. I kept everyone, even my close friends at a distance.


When the doctors asked about my mental status, the answer was always, "I'm fine." Except I wasn't fine. I knew they would throw me more drugs I couldn't afford and send me to different doctors I didn't have time for. So when talking to them, I always focused on the positives- always keeping things shallow, holding any pain or sadness inside, away from the world.


It wasn't until October 10, 2018, when this beast decided to throw me out a window, that everything came together; making me face down my disease, anger, and fears.


I feel like I could write a whole book on this subject, but I'll wrap it up here. This is just a small taste of my experiences with this silent disease wrapped in a quick blog. There are more moments with this disease I can and eventually, will expound on.


Til next time,


xoxo,

Viktoria


For more information about Epilepsy, please visit the Epilepsy Foundation at

https://www.epilepsy.com/

Title quote- "Epilepsy is like a lightening storm in the brain" -Onyx Song Jat Sharif



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