How epilepsy saved me from my worst enemy- myself.
It took a neurological disability and good friends to redefine how I think of strength
I was twenty-one when I first fell to the ground and was unable to move for forty-eight hours. When my body hit the floor falling like a watermelon crashing into the ground, my glasses smashing into my face, my friends thought that I had passed out. I do not remember any of this but once I gained consciousness, I was unable to talk, walk, or move. I was unaware of my surroundings and had no idea who anybody including myself was. Apparently, the only thing I did blurt out was the high-risk advice of “do not take me to the hospital”; advice which for some reason they trusted me enough in my state of complete unawareness to adhere to. This is how the journey started with them bringing me back to the life I knew before I fell to the ground or what I thought would be the life I had known for the twenty years I had been alive. They had to carry me to the bathroom, hold my head up to drink water, and sit beside me for two days.
After conducting a vast array of tests that made me feel like the doctors were practicing real-life voodoo on me with all the poking and sticking of my body, I was diagnosed with epilepsy. I was not diagnosed with the type of seizures most people think of when they hear about epilepsy commonly known as Grand Mal seizures. My body did not have violent muscle contractions. Instead it would completely abandon me. Initially I was a “vegetable” for two days and there was nothing that anyone could do, there was nothing that I could do for myself. The hardest part though, was not the loss of consciousness itself, rather the feeling of being a burden to everyone around me. A feeling which I later discovered through therapy was instilled in me at a young age.
My friends were my biggest allies. The support I lacked from my family that was completely absent physically and mentally through all of this, I received from my chosen family in Boston where we were all college students. “Your brain is different,” my friend (let's just call her A) said “but that is also what makes you so special. Sometimes you need to sleep longer. But you will always wake up to find me sitting here, at the edge of the bed”. A and D were my biggest allies. This made me realize that having a brain that functions differently can be a beautiful thing in a world where we are programmed to think in the same way. Even if it is from a disability.
Looking back I wonder if it wasn’t just me that made my friend think of my epilepsy like that. As psychology majors my friends understood the complexity or should I say the physiology of the brain to some degree, of the subconscious mind. The complexity of my brain. On the occasions that we would study together, me for whatever social science class I was taking and them for their psych classes, I would glance over at their computers and see intricate diagrams of the brain far more complicated than the explanation A gave me. When I felt like something in my life was going wrong, A always knew what to say with confidence. I relied on her and her third-year psychology classes as if my life depended on it. What we did not realize is that eventually my life would depend on it even though neither her nor D could physically fix me and most probably did not learn the slightest about epilepsy in ‘Psychology 301’. Still, there was a truth in what she told me.
I vaguely remember one of the last seizures I had. I was at work and I felt it coming on. All of a sudden I opened my eyes and was on the floor staring at peoples feet that were standing over me. I could not move my head, I could not speak and the only thing I remember is my eyes watering up as I laid there. For someone who was always taught that strength (in my world that meant the complete lack of showing the vulnerability of any type) is necessary to get by in this life, I felt sad, embarrassed, and pathetic. My colleagues took me home, reassured me that there is no reason to feel ashamed. They accepted me and were actually concerned. Something that is so natural yet felt so monumental to me even though I would never look down on someone experiencing that. On the contrary, I would do anything I can to support them but having felt from a young age ashamed of almost everything about myself, I added epilepsy to the long list not realizing I am stigmatizing this disability even more. When I woke up twenty-four hours later, in a different continent than where my first seizure occurred, there she was, my friend, sitting at the edge of my bed. Both of us being Greek moved back home after college where I continued to have epilepsy and she continued to support me mentally and physically. She looked at me and said “I told you I would always be here when you wake up”.
D had moved to London yet checked on me by texting me “you fell again? are you alive morsi”? (“morsi” being a made-up word we call each other in greek). Though a plane flight away that playful text still provided me with the comfort I yearned for.
My biggest challenge living with epilepsy is letting people see me at my most vulnerable state. It is by no means the end of the world and my “it could be worse” attitude has been both a blessing and a curse. Nobody warns you that your life can change in an instant from a heavily stigmatized, severely under-acknowledged disability. In one night I went from being the person always wanting to control every emotion in my life to not knowing if I will fall down and in the extreme cases of epileptic seizures, never wake up again.
“Its been a beautiful fight. Still is”- Charles Bukowski
This journey I have been embarking on for the past ten years has been one with many ups and downs. I have accepted that my brain does not function like the majority of the population (whatever that means). Most of all though, I hold close how important it is to decorate your life with people that hold not only your hand but also your head up when there is no way for you to do it for yourself. If I could tell them one thing it would be this: Please continue to be there for me when my body will not allow me to be there for myself. Please speak for me when I cannot do so myself. Please know that at that moment I am not ok but thanks to you, I will be ok and I will continue to speak out about what it's like to live with a disability that is not visible.
There is a deep sorrow when being told you cannot do much to help yourself other than take a cocktail of medication. All we can do is learn from it and know that there is strength in our pain. The most valuable gift I ever received came from my friends, those two psychology students who always seemed just as confused as I was until their clarity seemed profound. They explained to me about the complex physiology of the brain and taught me a simple lesson: even though we don’t always know how to let the world and all its mysteries in, someone can love us into becoming a different person and sometimes it's just the person you needed to save you from yourself.