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
Winter, spring, summer or fall… but mostly fall.
I have had epilepsy for more than thirty years. I have been photographing epilepsy events for almost ten years. Those of us with epilepsy have been searching for ways to communicate what we experience. Besides writing and speaking about epilepsy, I give pictures.
Another person with epilepsy created a virtual reality experience. People without epilepsy could “take a first glimpse into the world of Jane.” As I understood the experience, Jayne says what she feels, thinks and hears after a seizure. Participants could see how Jane struggled to make sense of some of her surroundings.
I would like to create a virtual reality experience application for smartphones that we could install for each season.… 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
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
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
I’m just a soul whose intentions are good
Oh Lord, please don’t let me be misunderstood
When I arrived for the Epilepsy Foundation of Northern California‘s 2014 Candlelight Gala, I noticed that I was “In Oz.” This was not the first time that I had walked into Oz. I have written about epilepsy and Oz earlier this year. In 2013, I discussed how having epilepsy felt very much like living In Oz. I am not the only person to make this connection. The Epilepsy Foundation of Minnesota completed their 31st Camp Oz this summer for youth with epilepsy. For some people, there is no place like home. For others, home feels like Oz.
The Wizard of Oz is a universal metaphor… and perhaps more universal for people affected by epilepsy. Characters are transported to strange places. The characters forge unusual relationships and face unnecessary challenges.… Read the rest
At the beginning of this month, I photographed Katherine Keeney, the new Executive Director of the Epilepsy Foundation of Northern California, at the EFNC Youth Summer Camp in Occidental, California. SEE THE Photo GALLERY HERE!
I also photographed the campers, counselors and the medical volunteers, including Dr. Joe Sullivan from UC San Francisco. In Northern California, those of us with epilepsy are fortunate to have UCSF and other excellent hospitals and research facilities in our region.
We are also fortunate to have a new leader who also happens to have epilepsy. Being the leader of a regional epilepsy foundation and having epilepsy is quite rare. If my research is correct, the odds that someone will be a leader of an epilepsy foundation and have epilepsy are worse than the odds for just having epilepsy.
The odds are getting better now. At least it feels that way. Keep Calm and Fight On!… Read the rest