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I really hate to write. I am sure that sounds strange coming from a person who has a blog and who wrote a book.
I approach a blank page with many of the same feelings of students facing essay questions. I remember a particular test in my college literature class that required an analysis of My Kinsman, Major Molineux by Nathaniel Hawthorne. While I was looking over the questions, I heard a loud groan from behind me and the thud of a head hitting the desk in despair.
Yes, that would be me facing a blank page and trying to write something meaningful about temporal lobe epilepsy. I would rather be analyzing Hawthorne.
All of us have something that drives us to do the things we do, consciously or otherwise. I wrote the book Surviving Wonderland, Living with Temporal Lobe Epilepsy and I attempt to make blog entries because I am always aware of the feelings of aloneness, helplessness and confusion that I experienced when I was first diagnosed.
At the time, I was working as an editor of healthcare manuals. I had a background rich in medical research. Not the kind of research with test tubes, but the kind that describes and links diseases, conditions, symptoms and outcomes. I was an expert on how this information formed the basis for healthcare funding in this country, and I even spoke at conferences, training others on precise classification and collection methods.
Understanding how things fit together in this world of disease was interesting to me until I was the one diagnosed with a disease. Then the research changed from being interesting to being essential.
In those first few years, I found a lot of confusing information on the Web, with very little of it reliable. I felt isolated and frightened a great deal of the time. I also felt tremendous shame as if this disease were some sort of punishment for being a bad person. Karma in spades.
I knew no one else with TLE and often had trouble communicating with my medical doctors. My therapist was the only person that helped me find a sense of equilibrium. Late, my husband and family would take on a huge part of that effort; but in the beginning, when none of us knew what was happening, my therapist offered sensible advice.
“Write a book,” was one of her suggestions. Both my husband and my neurologist echoed this concept at the time. The act of writing was supposed to help me work out my issues while providing a first-hand account of TLE for others to use in looking at their own experiences and challenges.
This seemed to be a doable thing since I was married to a writer and editor. I rationalized that whatever I wrote that was awful, he could perform some sort of magic over it and it would be fixed.
Well, at this point, I should say that writing the book sucked and that I am lucky my husband is still married to me. There were times when I cried at having to relive something that I wanted to share, but also wanted desperately to forget. There were times when my writing was so convoluted that my husband couldn’t fix it and I had to start over. There was many times when he had to work with me on how to say something simply to highlight the information.
The book was finished about the time I had to start getting off the anticonvulsants. My body was rejecting the medication and developing an autoimmune condition in the process. I forgot about the book. There were just too many other things to go through, like drug withdrawals.
When the dust cleared, I started looking for an agent. That’s the last I will say about that process. Luckily for me e-publishing exists and that my husband, who is still speaking to me, was willing to go through the tedious process of conversion, contracts and final edits.
The book exists as Surviving Wonderland, Living with Temporal Lobe Epilepsy . This morning it was #1 on Amazon’s Kindle list for Temporal Lobe Epilepsy. I hope this means that others with TLE at looking at it and realizing, as I finally did, that none of us is really ever alone.
Thanks again to my husband, who has given more to me than any person should be expected to give.