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The Internet offers amazing options when gathering and researching information. Anyone can read and compare research on the myriad treatments, medications, and theories related to Temporal Lobe Epilepsy. I am offering the living face and human experience behind the diagnosis.
Let me say this up front: I am not a writer. I have been married to a writer for more than 37 years; hence I know what a writer is and does. I am just a person with a story to tell. In fact, some might say that, except for my travels through Wonderland, I’ve had a rather unexciting life while raising two beautiful and talented daughters, AND while working in corporate America. Well, come to think of it, those experiences carry their own brand of excitement!
The thread of my life would not be of interest without the addition of the extraordinary condition called Temporal Lobe Epilepsy, or simply TLE. Increasingly over the course of my life, I have been like an Alice dropping through a rabbit hole into a Wonderland. At first, it was only now and then. As the condition progressed, however, I became a semi-permanent resident and fell increasingly under its control.
Each day I left my hotel room fully prepared for hospital site visits or meetings. I would put on my correct Ann Taylor suit, Chanel scarf and pearl earrings, slip into black high heels, make sure that my budgets and PowerPoint presentations were updated on my computer and that my PDA was secured in my Coach handbag, smooth down my $350 haircut, adjust my Anne Klein reading glasses (just in case) and then, right before I walked out the door, I’d drop acid . . .
Well, the acid part is not true. My brain did that for me, but the effect was the same. Such was the life I lived for eight years while the condition slowly made itself known and slyly took over my life. This site is about what it is like to go to hell and back. It is about the power of friendship, the love of family, the miracle of medicine, and the strength of the right diagnosis.
I’ll begin by introducing you to a few of my friends. I consider them my friends now, because I have turned to them time and again to figure out what is happening to me and to understand how society views me and my condition. They include Lewis Carroll, Vincent Van Gogh, Edgar Allan Poe, Fyodor Dostoevsky, Paul of Tarsus, and Joan of Arc. And, the latest to make the front of the TLE Wheaties box is Frédéric Chopin.
They became like faces on a cereal box for me, because I didn’t know anybody else with epilepsy when I was diagnosed in 2005, and the things happening to me were so strange that I looked for individuals who had shared some of my experiences, or seemed to. They were the only people I could find at the time. These people may not have had epilepsy, but the things they wrote about, the art they created, implied that they experienced the things I experienced. This was before Facebook and other social networking sites, and before I met hundreds of other TLErs on the Internet.
I identified with them because I needed friends, and I didn’t have any. I didn’t have anybody I could turn to and say, “Yeah, this is what I’m experiencing.” I literally felt as if I had fallen down a rabbit hole and there was no one else who understood or who could save me. And so I looked at them and thought that if they survived, sort of, then so could I.
I’d like to think they knew their condition was not madness, but a nameless companion that lived in their brains and took possession of their bodies. I want to believe each one of them took a little something of what he or she experienced and elegantly incorporated it into their writing or art in such a way that they turned TLE into a gift and not a curse. Back then, and it hasn’t really been that long ago, TLE was a social curse. People thought we had a form of madness. They locked up people for having it. They prevented us from marrying and having children. They inflicted upon us the most outrageous medical treatments.
I’m not really sure about Joan of Arc. Some people believe she had TLE. Some people believe Mohammed and other religious leaders, such as Moses, had our condition. I think that’s because there’s a level of religious fanaticism that sometimes accompanies TLE. I don’t know. I’ll leave that to the professionals. My calendar is full just trying to make it through the day, hour by hour.
Let me add just one more thought: The world is more than we know, so who’s to say my experiences are not real. They are real to me, and that’s what really matters.