Some of you may know that I have epilepsy. Some of you may know that next month I will have had epilepsy for thirty years. Others may know that I have been an advocate and spokesperson for several years. I speak, write, photograph and wear t-shirts. I was a Featured Blogger on the old Epilepsy Foundation site. Sometimes I am interviewed by news organizations. Sometimes celebrities talk to me. Other times, I am completely ignored and disrespected. It is possible that I forgot to shower and/or brush my teeth, which I must have forgotten to do so often the last year that I have decided to step back as a spokesperson.
To help with my decision, I read some of my old posts. Five years ago I wrote about my first seizure. Below is an excerpt.
There were many reasons that I chose to hide having epilepsy. This is difficult to explain without sounding like a whiner. As a society, we often ignore people with disabilities or we look at them (us?) differently. We even tell our children that it isn’t nice to stare so that when children grow up and become disabled, they already know their role: become invisible. Don’t let people see you.
I hope our world is changing or that I will learn I am wrong. This summer I become more comfortable with myself by visiting Camp Coelho, a summer camp in Yosemite for kids with epilepsy. While I aspire to be a role model, the next generation is better positioned to show us how to relate to each other. Young people are more accepting.
On the other hand, I have a different role. I know how to advocate. And I know how to use imagery to make the invisible visible. I also have twenty five years understanding the difference between the two.
Five years ago, I probably understood the challenges better than I do now. I also understood myself. I am an advocate and I define advocate similarly to the way many lawyers define compromise. I win when all sides leave unhappy. I tend to nudge all sides to move a little towards understanding each other better, and while that helps our epilepsy community, I realize that I tend to annoy people.
Last week while I was attending an art educators convention, I was explaining my present state of mind to Carolyn Carr one of the organizers. I told her that I was surprised by some of my recent successes … and even more surprised by recent failures. She laughed in a way that said she understood.
Epilepsy is like dancing with an invisible partner who will shock you and knock you unconscious. After your dance partner shocks you a few times, your friends ask you about your aura before you were zapped. “What did it taste or smell like immediately before the seizure?” Uhh, you did see me get picked up by an invisible being and thrown across the room, right? You want to know what it tasted like?
So if we seem a little paranoid, please give a break. We told you about strobe lights. No problem. You created EDM. Maybe EDM is fine. I haven’t been. I am a little paranoid that I will have to answer questions about my aura.
I find shelter in the paranoia. I dress in barbed wire and make friends with my fear. Paranoia is a metaphor. Paranoia also explains our history and paranoia describes our reality. Paranoia is a lens to view our history. People with epilepsy have been persecuted. We were killed by Nazis too. We have been slaughtered throughout history. There are millions of people with epilepsy and yet there are only a few known historical figures. How is that so? Is it really paranoia or a realization of our history? We know that pharmaceutical companies have placed profits above our health. We know how public school officials and educators have talked about people with invisible disabilities (and those with visible disabilities.) We know what happens now, yet We Keep Calm and Twitch On.
Today while listening to the 80’s station, I heard the Spandau Ballet song True. I listened closely to True and watched the shadowy silhouette video when I returned home. It’s not a bad song. I had not listened to the lyrics in decades and I do not know if I had ever researched the origin of the band’s name. Supposedly, the name is a Nazi reference, or at least a barbed wire “twitchy” reference. This is the sound of my soul… I bought a ticket to the world, but now I’ve come back again. Why do I find it hard to right the next line?”
So, how can we remain true and write the next line? I do not have an answer for you. You may choose to remain invisible, and if you do so, I would understand. I have chosen to see and be seen. It’s too late for me to return to my old life.
This blog post is much messier than I would like. I am finishing on the 19th, posting it to the 18th, even though I wanted it done on August 17th. I also wanted to write much more about c’s, see’s and sea’s as well as Ten’s and X’s. It did not happen. I have a few ideas on my Notes on a Blog page. and since I am going to stop writing for the foundation, I might have time to put together a book or something else.
(My dad committed suicide ten years ago Saturday.) On August 17, 1969 the band Ten Years After played Woodstock. They are best known for their song “I’d Love To Change The World.” The chorus continues, “but I don’t know what to do.”
Well, I know what to do. I am going to do something that has been described as insane or crazy. I am going to do the same thing over and over again and expect different results. I am going to hold myself up to the mirror, reflect, repeat and solve for X where X = the unknown.
Join me if you wish, and remember to take risks and take care.