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Twitch and Shout – Advocacy Shaken and Stirred

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.
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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.

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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.

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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.

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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.

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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.

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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.

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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.

The Evolution Will Not Be Instagrammed

So, today is the 10 year anniversary of the day my father committed suicide. I was going to write a very dramatic blog post about how tragedy has visited my life too often and my life was unfair, but a funny thing happened on the way to this ten year anniversary. I started to see my life differently.

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If life is unfair, I have the advantage, at least for today.

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Since I met Brad Paisley two weeks ago, Robin Williams committed suicide. Williams was 63, the same age that my father was when he committed suicide. On August 14, 2014, Paul McCartney played the last concert at Candlestick Park in San Francisco.  Tonight I danced with a kind woman from the Havin’ Fun Bunch. I returned from photographing roller derby just in time to hear the song, “When I’m 64.” The Havin’ Fun Bunch had a Disney themed party this year. Every year their mission is to have fun. I just started it.

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You can read more about the direction I was going to take by reading my Notes on a Blog post. I needed to go through all of those steps before I could decide to be grateful and have fun.

I visited my farmers’ market friends from Fresno County. I visited a high school friend (a FriendInCheeses indeed!) who also happened to be in San Francisco’s Mission District today. Later I drove to Sacramento and photographed a really cute baby. I would have taken more baby pictures, but roller derby teams from Santa Cruz and Sacred (Sacramento)  interfered with the Roller Derby photo shoot .

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I met some of the most beautiful people I have ever seen today. They all look so similar, and yet very different.

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A year ago today I started working at a high school. I loved teaching photography, yearbook and journalism.  I do not know why I am no longer there, but I trust that something will work out. One year ago, I titled my post, “On Track – Nine Years Later.”  Paisley mentioned Mark Twain during our discussion. I do not know much about Twain, but I remember the quote, “even if you are on the right track, you will get run over if you just sit there.” I guess I needed to move.

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I only have a few more minutes left on August 16, 2014. I am probably going to leave my amazing DoubleTree by Hilton suite (thanks Mario!) and go out for a little bit. I will upload photos later and edit this post. I will also add more to my new “Notes on a Blog.” I am truly thankful to all the people who have helped me the last 10 years, 20 years, 30 years and 40 years and 46 years. Again, it seems unfair how much I have been able to do, because of the changes I have been forced to make.

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As I was talking with two different high school friends, I was reminded how I signed my old high school yearbooks. (Danny, I think I took the salutation from Brian with an “i”). When I was in high school, I wrote, “Take Care and Risks.” It sounded cool, but now that I have experienced a little more tragedy, I would change my salutation to

Take Risks and Take Care….

Take care of yourself, take care of each other, take care to appreciate the little things.

 

 

Music is the Best Medicine

If Music is the best medicine, what do you take with a Whiskey Lullaby?

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So I went to see Brad Paisley on Saturday night at the Sleep Train Amphitheatre in Wheatland, California. When I say that I went “to see Brad Paisley,” I mean that I went to talk to him and photograph his show. Paisley contacted me after I had written a blog post regarding a seizure joke he made on live television. Paisley seemed genuinely apologetic during our online communications, but until I met him in person I doubted if he had even sent the messages.

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When people ask me what is it like having epilepsy, I can now tell them about the Brad Paisley Experience. Having epilepsy is not normal. Having epilepsy is watching television and hearing one of your favorite musicians say something that trivialized a deadly health condition. You will want to protect your friends who have seizures and your friends who love country music. This is what it means to have epilepsy. You are protecting other people, because of something you have.

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Epilepsy is electric and invisible. I started receiving electronic messages that were difficult to trust. “Hey, Brad here.” Dude kept writing. I mean, he wrote to me more about my blog posts than my mom. (Note to mom: You are falling behind Brad) That is what it means to have epilepsy. You are grocery shopping and you receive electronic surges out of nowhere. Sometimes the messages knock you down. Sometimes the messages are from Brad Paisley. You do not try to explain, because you know that nobody is going to believe you. Keep Calm and Shop On.

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The most normal part about the Brad Paisley Experience was talking to Brad Paisley. This is clearly not normal either. I get that. I wish I could see a replay of my interactions from Saturday so you could see how badly I communicated with everyone except Brad Paisley, at least until I began photographing the show.

This is what I told him.

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He reached out. Occasionally, someone will see me on the news or read something I wrote and contact me, but it is rare. It just so happens that Paisley is a well known artist. It means a great deal to me when anyone contacts me and I am grateful to have the opportunity.

We talked more about music, the show and our background. He is someone I respect and if our lives were different, I could see being friends with him. As people age, it is difficult to make new friends. I imagine that it is more difficult for celebrities.

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This is what I did not tell him.

In ten days it will have been ten years since my dad shot himself. If my father had not committed suicide, I would not have become an epilepsy advocate. Next month, I will have had epilepsy for thirty years, and I had been silent for most of the time. I threw myself into suicide support groups and other related activities so that I could, in part, reduce my stress to prevent people from knowing that I had epilepsy. I wanted to keep my secret.

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Dealing with my father’s suicide gave me the strength to deal with almost anything. Paisley’s duet Whiskey Lullaby reminds me of my father. The songs also reminds me to live life fully. When nobody was available, I was able to call on Paisley, or Lady Day or Coltrane… to help me Act Naturally.

One day I might be able to live naturally.

More from the show here

Note to Notes: On August 10, I added a new section on my old blog called Notes on a Blog. This is a stream of consciousness reference section to help me and readers.