Defining Epilepsy and Creativity

This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along and add comments to posts that inspire you. (View my photos from the recent EFNC Gala if you wish too.)

 (bryan farley)

Last weekend when I was photographing the 2015 Epilepsy Foundation of Northern California Gala at the Fairmont San Francisco, I considered this week’s topic about Epilepsy and Creativity. Those of us with epilepsy are often asked about epilepsy and creativity. Does epilepsy make us more creative? Less creative? Is art therapeutic?

As with most things epilepsy, I think it depends on the definition… and who is doing the defining.

 (bryan farley)

I am 1 of 26 Americans living with epilepsy. As an artist with epilepsy, I think about creativity often. As a person with epilepsy, I may also think about creativity differently than many artists.

 (bryan farley)

Having epilepsy has forced me to be creative. I must be different; I must see differently. Our systems and structures were not created for me, so I extend bridges. I fill gaps. Sometimes people think my blank stares are caused by my having epilepsy when I am often pausing to figure out how to solve an unnecessary problem. Sometimes I look blankly at someone while I search for an appropriate answer to an inappropriate comment. I must continue paraphrasing my own words from 2010.

 (bryan farley)

People with epilepsy use our creativity to resist being defined. You can hear it when we say something like, “I have epilepsy, but it doesn’t define me.” Perhaps it is time for people with epilepsy to say something like,

“I have epilepsy and I define IT.”

We will begin saying that we are one of 26 and we will use all 26 letters to create our own story, our own song, our own definitions. We won’t let a creative American pharmaceutical company that moves to Ireland define us. We won’t let doctors define us. We won’t let non-profits or parents define us.

We define epilepsy.

 (bryan farley)

We must create our own stories… dance to our own drummer; find our own rhythm. It might sound like a big challenge, but big challenges are often overcome by people who are from small places. This year, the Epilepsy Foundation of Northern California honored Tony Coelho with the Innovation Award. Coelho grew up in Dos Palos, California before representing the area as a Congressman. Dos Palos is a small town in the San Joaquin Valley.

In Spanish, Dos Palos means “two sticks.”

7 Responses to “Defining Epilepsy and Creativity”

  1. Alice says:

    Hi there,
    the bridge/leg photo – extending bridges, perfect!

  2. bryan farley says:

    I know… it wasn’t bad. 🙂
    Want to know something funny? I was trying to make a different picture and I made this one instead.

    bf

  3. Soo Ihm says:

    Brian,

    I really liked your post. Especially your comment on “I have epilepsy and I define IT.”

    Thanks for sharing.

    Soo

    • bryan farley says:

      You are welcome. I have played with this phrase for a long time and I no longer felt that is was enough to say that epilepsy did not define me. Besides, I always felt that it shaped my life.

  4. Lisa Lindahl says:

    “one of 26”? Sorry, I don’t understand. I thought we were in the millions… Love your photos, btw.

  5. bryan farley says:

    Lisa,

    The Epilepsy Foundation has a 1 in 26 campaign. I think it means that one out of every 26 has it.

    The link should be in the blog.

    bf