Show me a hero, and I’ll write you a tragedy – F. Scott Fitzgerald
The Epilepsy Foundation of Northern California held their annual gala at San Francisco’s Four Seasons Hotel on Saturday, November 10, 2018. It was a 1920’s themed event with dinner, dancing, auction and speakers. The fundraiser was pretty good, but it left me “feeling so Gatsby.”
While I understand the desire to go back to a more simple time like the Roaring 20’s, these events erase history and devalue my experience. In the 1920’s, we were sent to our own colonies or asylums, (the colonies were for the “epileptic insane”). Laws restricted marriage for people with epilepsy. The EEG was not “discovered” until 1929. Hitler would soon begin experimenting on those of us with epilepsy.
If we are going to play make believe, could we at least go back to the era of “the sacred disease” when a son of Zeus became a hero?… Read the rest
I have had epilepsy since I was 16. I had my first seizure one month after running the San Francisco Marathon. For many years afterwards, I continued running with limited success. Mostly, I ran away from the truth about my health.
Last weekend, I attended the first annual Seize the Moment 5K walk/run for Epilepsy in Sacramento, California. The event was held at Gibson Ranch Park on March 26, 2017. March 26 is also “Purple Day,” an international day for people with epilepsy. There was a regular 5K followed by a color run with a lot of purple haze. My two children attended with me.
Jodi Ortiz, race manager
The National Walk for Epilepsy in Washington, D.C. was the same weekend this year. I had gone every year since 2010, but I did not feel like going this year. When I first started attending, I was excited. I felt useful.… Read the rest
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.)
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.
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.
Having epilepsy has forced me to be creative. I must be different; I must see differently.… Read the rest
For all the world to see… or not see.
The time has not yet come for a complete history of people with epilepsy. For a complete history to be told, those of us who live with epilepsy must create our history. We must write and gather our stories. We must research the topics that we believe are relevant. We must understand what it means to work and live in communities that work against us or ignore us. We must include our stories, because others are working to excluding us.
Those of us who live and die with epilepsy, must investigate what it means to those of us who live and die with epilepsy. We must learn what it means to tell our stories to each other. We must resist the temptation to make our stories palatable for others, until we learn how to tell our stories to each other. How do we tell our stories for each other?… Read the rest
The Presidio is a historical military fort that guarded the Golden Gate. Although the fort did not protect us from the wind, it provided many places to shoot. I especially enjoyed shooting next to The Walt Disney Family Museum. I have mentioned a rumor about Walt Disney having epilepsy; I feel more part of the family.
The museum started a new exhibit with Disney and the surrealist (Salvador) Dali. The exhibit, “Disney and Dali: Architects of the Imagination” discusses how the visionaries became friends. They were innovators who found new ways to tell stories. The world found new ways to see. As advocates, we have similar challenges, but not necessarily the skill of Walt Disney.
Since I photographed the EFNC staff, Disneyland celebrated their 60th anniversary. When Walt launched Disneyland, many doubted whether it would succeed. Visionaries often encounter this problem.… Read the rest
We are here and it is now. Further than that, all human knowledge is moonshine. – H. L. Mencken
Last Friday, Brad Paisley performed at the same Sacramento area venue where I met him in August 2014. On Saturday, he performed at Shoreline Amphitheatre in Mountain View, California. (Both tours support his recent Moonshine in the Trunk album.) I have photographed musicians at both places and I had hoped to see him again so that we could continue an important discussion. More accurately, I wanted another chance to share a complicated story about epilepsy, music and apologies.
Last year, Brad Paisley invited me to his concert after I had written an open letter to him. People in the epilepsy community found some of his comments insensitive. (I have epilepsy and Brad Paisley CD’s.) I did not expect a response or an apology from Paisley, but he contacted me directly to apologize for his “poor choice of words.” When we met, he appeared genuinely sincere. I photographed part of the show and wrote about our meeting. Paisley impressed me and I wanted to share his gesture with a larger audience.… Read the rest
Writing is linear. Living with epilepsy is not.
So this blog post has started to resemble my life. I am trying to translate it for “you normals.”
First: I had an amazing birthday on Saturday. My two children spent the day with me. They woke up early and followed the schedule that they had created. We left the house so that we could arrive early to volunteer at the 23rd Annual Epilepsy Stroll. I photographed the event for the Epilepsy Foundation of Northern California . My children were beautiful and supportive.
I felt blessed.
Second: I noted how I had grown as a person with epilepsy during the last six years. Six years earlier, I attended my first epilepsy walk. In 2009, the epilepsy stroll was also on my birthday. I look different now. I act different. In 2009, I was afraid to identify as a person with epilepsy. In six years, I have become an outspoken advocate.… Read the rest