Epilepsy & Me
Epilepsy is a disease, a disease I have and have come to terms with. I didn’t choose to have this condition. Epilepsy chose me when I was just nineteen years of age. It has been a part of my life for over three decades now. I have hated it, allowed myself to feel helpless because of it, and had disdain for it. Eventually I accepted it, and then, I became fascinated with it. I ultimately developed a passion to do something good about it, something good for other people. My seizure disorder is a part of me, but that simply isn’t enough. What I want may be a lot to ask. But I want to help pull back the veil and uncover the mystery and misconceptions about this disease, especially the awkwardness about it. I want people to understand it. I want them to have answers to the questions I know they have but are hesitant to ask.
My Story
I first experienced epilepsy in my life when I was in college. I started to have “episodes” where my stomach would turn over. It felt like a million butterflies were fluttering their wings inside me. If I was taking notes in class, my arm would fall off the desk for a moment and I would see later the scribble mark where my pen left the paper. What I didn’t understand at the time was that I was having auras – an unusual feeling or sensation. I would see visions I could not explain. On one occasion, Snow White and the Seven Dwarfs walked through one of my classes during a test. I remember shaking this off and blaming it on the difficulty of the exam. My coping mechanism at the time was to come up with all kinds of explanations and excuses during my private talks with myself. I could blame it on lack of sleep because of late night study sessions, cramming for tests and long hours at work, etc., etc. I knew deep down something was really wrong but I could not, and mostly would not, let myself go there.
I had a brother I never met whose name was Barry. I am told he was a wonderful little boy, always very inquisitive and kind. He died at the age of five. I was born two years later. Barry started having seizures at the age of six months. His doctors’ best guess as to why was that he was born with the umbilical cord wrapped around his neck and he had suffered from a lack of oxygen during birth. Epilepsy is a disease full of mystery. Doctors do their best to make the appropriate guesses as to why a person has seizures. In the case of my brother and me, we both had a genetic predisposition to this disease. All we needed was an intervening incident to kick our epilepsy genes into motion and the disease could become active and flourish. I had had a severe case of meningitis when I was six months old and my doctors think that was what started the ball rolling for me. The thought that my parents would have to go through this with another child kept me from allowing any rational thinking about my medical situation to surface. I kept myself in denial.
I was still in college and now 21 when one morning this horrible noise started blasting out of something on my nightstand. It just kept beeping over and over! I kept staring at the little box in disbelief that it would continue on with such a horrible racket. I looked down at my pillow and saw blood, and my mouth hurt really badly. Several minutes went by and gradually a bit of normal thought process returned. I finally realized the noise was coming from my alarm clock. I shut the clock off and was so relieved to have quiet again. I slept for several hours after that and then finally called my mother at work. I was just calling her to tell her I had stayed home from class to sleep in, but after I gave her the details her tone of voice became very serious. She rushed home from work and took me to the hospital. I still wasn’t sure why we were going but I went along with her anyway. Then the facts about what had happened started to slowly trickle back into my slightly confused brain. I bit my tongue! Oh my God, maybe I had a seizure…. Maybe I have been having seizures!
My life changed in an instant. I could no longer drive and had to start taking medication. The side effects of the anticonvulsants caused me to fall asleep almost immediately after taking them. My mom had to drive me to classes and had to wake me up by the time we arrived at school. I felt that everything about me slowed down. I felt it all happening. My thoughts came to me with what seemed like a one-minute delay. I was always tired and groggy.
Months of adjusting to medications would turn into years of medication trials. The side effects from medications were always the most difficult part to get used to. Some pills made me sleepy, some pills made me completely wired at night; some made my hair fall out and some made me grow hair everywhere. I had one pill that made it almost impossible to eat, and if you knew me, you would know that is very concerning, as eating is my favorite activity! The problem with all of these medications was that the seizures never stopped so the process of medication trials continued endlessly.
In 1996, my neurologist said the next step would be to consider surgery. I went to UCLA’s Medical Center hospital and after some testing my doctors decided that I was indeed a candidate for surgery. A large part of my left temporal lobe was removed, resulting in a twelve-year reprieve from seizures. I had to continue on medications but my life went back to normal in many ways. I was even able to drive again. Eventually, the seizures returned and I went back to and continue to go through drug trials and deal with their side effects. I’ve been in the hospital for tests two more times. The best part of these hospital stays was that the doctors would slowly take me off all my medications before they introduced a new one. For a brief moment, I could feel myself again, in my own skin, with no side effects and it was a wonderful feeling.
After years of seizures and medications, I have learned to make adjustments in my life. The importance of establishing routines is crucial. Taking my medications has to be on a schedule and on time. A healthy diet is extremely important and I now recognize its value and how the lack of it leads to more seizures. I love to exercise but also know that I can’t do it as much as my friends do. Social situations are different now. I still love being around people but too much stimulation around me can be difficult and I can follow conversations better in smaller groups. It can be difficult for me to take in a lot of information all at once, so I try to accomplish tasks in smaller segments. I value my time alone as well, and balance it with social time. I spend a lot of time gardening, cooking, and creating art, all of which have nothing to do with being epileptic or any other medical difficulty. So there are the rules I’ve just had to learn through the years and they took a long time to accept, but I am grateful for their lessons along the way.
That is my story. I am a person with epilepsy, but that diagnosis does not define me. I refuse to take on the title of an “epileptic” and I ask others not to use the word in that way. In our culture that word weakens and stereotypes an individual. People who happen to have epilepsy are lawyers, authors, football coaches, teachers, etc. – take a look at my “famous people” section. The problem is that many of them are afraid to let others know because of how a person with epilepsy is treated in our current society – and mostly because of the general fear and lack of education about seizures. There are public service announcements on television regarding strokes and heart attacks. I know how to pump someone’s chest who is having a heart attack to the beat of the song, “Staying Alive,” and to call 911. Easy and advertised simple instructions could also be provided for seizures.
I think if people felt less fear about seizures they would start to view epilepsy differently. I was riding my bike one day and had a seizure and fell to the sidewalk. A man was walking towards me and could see me laying on the ground. He simply stepped around me and went on his way. I am a very independent person and try my very hardest to take care of myself. What if that man had even the slightest information on identifying a seizure? It’s possible that scenario would have come out differently for both of us. That is my hope and I have learned to lean in that direction as much as possible.
If I could ask for anything from the general public, I would ask for two things – patience and understanding. Please be patient with those of us with epilepsy. Our brains need time to process new information and collect our thoughts. We have to watch out for too much stress. Sometimes after a seizure and sometimes because of the medications we are taking, we need time to recover and/or respond. Understanding our disease and understanding that we are still normal everyday people, just like you, can make a world of difference for us.
