My name is Cherilyn, and I live in Shelley, Idaho, a small town near Idaho Falls. I was diagnosed with epilepsy when I was 13 years old. During lunch hour, I had two serious grand mal seizures in the junior high school library, which my parents were told had a 90% death rate. They were also told I had tested positive on a drug test -- it was actually from half of a cold tablet. I was out cold and couldn't speak up for myself; my parents were terrified.
Personally, I had only heard of epilepsy once before, in the sixth grade. My teacher read a book to the class called "What If They Knew?" In this book, a young girl went to live with her grandparents and hid her secret from all her new friends for as long as she possibly could. I, on the other hand, found out while I was in the hospital that everyone "knew." My music teacher, Mr. Gemar, had explained the situation to his afternoon classes, and at the band and choir concert that night, told the community what had happened. Then, because of the death rate, he had dedicated a song to me called "Rhythm of Life."
That was hard for me at first, and yet it made things easier in the long run. Mr. Gemar had let people know that it wasn't something to joke about. And because everyone knew about it before I did, really, there was no reason to keep it back.
After three days in the hospital, I went home and startedlooking up everything I could find about epilepsy. Icouldn't believe what i found. All of a sudden things started makingsense. The books were identifying things I'd been feeling all my life,but couldn't quite describe. I had felt sometimes like I was in themiddle of a fairy tale or a nursery rhyme, but couldn't put my finger onwhich one. I had asked my mother as a child why this was, but since Ihad started reading at the age of three and buried myself in books, shehad figured it was part of my imaginative side. What reason would shehave to link the fairy tales to the two fever seizures I had as a baby?"Go on, dear," she would say, encouragingly. Later it had felt likewhatever was going on was all from long ago, even though it couldn'thave ever happened before. I knew I was just imagining it. Just like Imust have been imagining that my arms started bouncing on the table inthe library that day. But the books I was finally researching in, and afriend whose father had epilepsy, all matched up to what I had felt allalong. All of a sudden I was "a normal abnormal!"
I still have to admit it was a hard day when the doctor confirmed the diagnosis. I couldn't help but cry.
With everyone knowing from the start what had happened, I never felt it necessary to hide it. In the long run, I realized I would rather let people be aware of what was appropriate in a given situation than catch them off-guard and end up with us all feeling stupid. And I have always had a willingness to share my situation with others if it could help them.
Within a year, I had already been put on three medications in various doses and mixtures. Over the years there have been at least eight that I can think of off the top of my head. Brain surgery has been contemplated at least three times, and eliminated. The doctor who was over my VNS implant informed me that after three meds didn't work, the likelihood of finding one that did was minuscule -- why has it taken so many years for someone to state that? And since I have focal and generalized seizures, brain surgery could be dangerous and would only be able to solve part of my problem.
Over the years, my seizures have varied. After they showed themselves, they never went away. I have had grand mals, petit mals, partials and blackouts. The more serious they were, the further apart the tended to be -- in the beginning, at least.
When medications have been tried, at first I have had what one doctor calls "honeymoon" periods. They work for a while, then fade off. Once, about a year and a half ago, the honeymoon lasted three months! What bliss!!! But it always goes away eventually. And I go back to having as many as four seizures a day, with no apparent causes that I can pinpoint.
Nonetheless, in the nearly 14 years since diagnosis, I have not sat around. I graduated from junior college with associate degrees in elementary and special education, moving on to study deaf education at a state university. I also left school for eighteen months, serving a full-time religious mission away from home. Upon my return I spent one semester going to school full-time, working as a grocery checker full-time, tutoring part-time, supervising the musical department in my church, and planning my wedding, all the while holding down a 3.5 GPA. Eventually I decided that education would not be the field I would be best in, but this choice was certainly not because of medical limitations! Right now, still married and working continually at the grocery store for over four years now, I am training through a home-study program in medical transcription, a field that will allow me to have a strong career right in my own home.
I remember reading about once how it was standard only a century ago for people with epilepsy to be committed to institutions or otherwise held away, restrained from marrying and kept medically from having children, restricted from education and occupations. I realized that if I had to have this in my life, I was glad it could be in this day and age, when all the doors were open to me, and I could do anything I decided to put myself to.
If there is anything I want to tell everybody, it is what I heard once years ago: "Your problem is never your problem. Your problem is your attitude towards your problem." Whether it is hair that is always frizzy, a broken bike wheel, no drivers license, freckles, multiple sclerosis, or epilepsy, your problem is only a problem if you make it one. I have been constantly amazed at how my epilepsy has helped me understand a wide variety of things in all kinds of situations. I have come to look on it as an asset in many ways.
I related strongly to David Naess's story of trying to decide if the VNS would be right -- it took a long time to determine this, and to convince the insurance company that it had moved past the "experimental" phase in the medical field and was worthy of coverage. Nonetheless, I received the implant on Tuesday, January 19, 1999, at the University of Utah in Salt Lake City, and am in process of having it programmed to see if it can work for me. I am very hopeful, although I realize that it is not for everyone. I hope to keep you updated.