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.
farley-6037

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.

farley-6114

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.

farley-6541

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.

barbed wire tall-5866

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.

farley-5641

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.

farley-4886

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.

Comments

comments

4 Responses to “Twitch and Shout – Advocacy Shaken and Stirred”

  1. Ann Gillie says:

    I just want to applaud you and say Thank You for being an advocate for Epilepsy…the one thing that you said on here, ” I am completely ignored and disrespected “, well I felt like that for the longest time, but not anymore.

    I had neuro surgery 11 1/2 yrs ago in Edmonton, AB, Canada, with being given a 55% chance that I would have my seizures reduced and maybe even gone .. Well my last seizures were 2 days before my surgery..I beat Epilepsy! I lived with seizures for 20 yrs, was several meds, but I never let epilepsy control me..I still went to school, played sports, worked..I am to stubborn to have it dictate what I could and couldn’t do – obviously being smart though about my choices.

    I think Bryan and I have allot in common….my goal is to be an advocate for epilepsy, internationally!! But I also want to spread awareness and remind those with epilepsy that support and talking about what you are going through is a step that you will never regret.
    Take care
    Ann
    Alberta, Canada

    • bryan farley says:

      Ann,

      You are more than welcome… and Thank you for taking the time to respond.

      When people reply to one of my posts, I feel that being an advocate just might be worth the struggle. As you probably know, there is a great deal that goes into doing this type of work. We expose ourselves for everyone and, at least for me, that takes it effort. It also takes effort to write and take pictures. It takes effort simply to present the story so that others can understand. There are benefits too. For example, someone contacts me and I can relate to them.

      What have you found to be your challenges as an advocate?

  2. Ann Gillie says:

    Hi Bryan,
    I believe that definitely one of the hardest challenges as an advocate has been getting the opportunities to speak… Don’t get me wrong, I have spoken in Phoenix, AZ at their Epilepsy Walk, in Calgary, AB , Toronto, Ontario and Edmonton, AB. However, when it comes to epilepsy there seems to be no funding to help with getting to these events..I do the best I can to get myself there,but financially it is tough. That is one reason I started my Facebook Support Group, and I have people from all over the world on it.
    Another challenge, even now after having Surgery and being seizure free, is that people just don’t get it..they don’t understand what epilepsy even is. My #1 goal since i started was to educate others on what epilepsy is, it’s a disorder not a disease.. Help them understand. There needs to be way more Epilepsy Awareness around the world.
    Have a great weekend
    Ann
    http://www.anngillieepilepsyspeaker.com

Leave a Reply