Have Epilepsy, Will Travel

I will remember 2009 as the year that I began living with epilepsy... after 25 years of having epilepsy. It has been strange watching myself change from that person who constantly hid from family, friends, and strangers. I still hide, even from myself, but not as often.

On Friday the 13th, I visited the Epilepsy Foundation of America near Washington, D.C. I was in the D.C. area for a journalism educators convention, and I arranged to visit Lisa Boylan, the Senior Editor of EpilepsyUSA, who I "met" through the Epilepsy Foundation's e-community page. I sent her a couple of my blog posts and some photography links hoping to make myself useful.

EpilepsyUSA, the foundation's magazine, has a regular column written by a person affected by epilepsy. Lisa has asked that I write one of the columns. I am honored that Lisa thinks I have something worth saying. We also discussed other ways that I can be involved, and while we were talking, Kenneth Lowenberg, Sr. Director of Communications walked into Lisa's office. He asked me a very interesting question. Why, after 25 years, would I decide to talk about having epilepsy? Why now?

I have been thinking about this question, and realizing that it has taken me years to become open, just as it had taken years for me to learn how to hide. Part of the process included my visit to Camp Coelho this summer. I created a photo book for my local foundation and for the national foundation, and printed a dozen copies. Lisa sent a copy to Tony Coelho, the author of the American with Disabilities Act and past president of the Epilepsy Foundation. Lisa says that Tony will like it. This pleases me. A lot.

2009. Quite a trip. Literally and metaphorically.