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
Sometimes I participate in magical thinking, even when I participate in fundraisers. On Saturday May 21, 2016, I participated in the Out of the Darkness Overnight Walk organized by the American Foundation for Suicide Prevention. Originally, I had also planned to participate in the Stroll for Epilepsy earlier on May 21st.
When the dates for both events were announced, I thought it was a divine message. three years before both events on May 21, 2013, I wrote “A Letter To Fathers Considering Suicide in the Digital Age.” The blog post explains how I experience my father’s suicide. The experience is a struggle… a struggle that has given me many gifts, including the strength to talk and write about epilepsy. When I wrote the May 2013 post, I didn’t realize it would become one of my favorite pieces, because it is extremely personal and vulnerable. Now I realize that it has become one of my favorites because it is personal and vulnerable.… 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
On Saturday November 7, 2015, I photographed Oakland Mayor Libby Schaaf’s 50th Birthday Gala at the Old West Oakland Train Station. Mayor Schaaf celebrated her birthday by having a fundraiser for the East Bay College Fund. The 50th Oakland mayor raised money for 50 scholarships.
One man practicing sportsmanship is far better than a hundred teaching it.
One person practicing diversity is far better than one hundred people teaching it.
Even though the event was about diversity and education, it was more about “practicing diversity” than teaching it. I did not hear anyone mention the shallow quote about closing the achievement gap.… Read the rest
Last weekend I photographed the 2015 Girls Inc of Alameda County Taste Event. You can view my final photo gallery of 161 photos and you can scroll through this post and preview several of the images from the event in downtown Oakland.
I photographed the 2014 Taste fundraiser last year too. It was also at the Rotunda. I have included the blog post. I am also including the photo gallery. Last year, the event started at the Girls Inc’s Simpson Center across the street from the Rotunda.
I did not taste much of the food this year, but I photographed the preparation. I hope I captured the excitement on both sides of the curtain.
The auctioneer was excellent again this year. When I was in high school, my mother worked for an auction house, so I know the rhythm of a good auction. This experience probably helps me photograph an auctioneer, especially when there is a good one.… 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
Depending on when you met me in the epilepsy community, you may know me as a poised advocate who always seems to have his camera or you might know me as a nervous neurological wreck. When I first visited the Epilepsy Foundation of San Diego County last February, I was the awkward version of myself.
This year I was much more comfortable. I knew the routine and I even recognized some of the people from last year’s event.
People seemed to recognize me too! On the day before this year’s walk, I visited the office. I was much more relaxed. I want to say that I acted like myself, but that is only partially true. I also acted like myself when I was nervous and scared. Sharon’s Ride, and similar events, helps me feel less scared.
On Friday March 30, the Epilepsy Foundation of America held the 2012 National Walk for Epilepsy VIP Reception. Eisai sponsored the event. It was held at the National Museum of Women in the Arts the evening before the National Walk for Epilepsy. I embedded a 39 picture photo gallery below the initial photos.
At the event, EFA honored Howard Koh and his part at creating the Institute of Medicine Report on the Spectrum of Epilepsy. According to Tony Coelho, the IOM would not have released the report if not for Dr. Koh.
Several other prominent epilepsy advocates attended the event, including Susan Axelrod and Carmita Vaughan from CURE Citizens United for Research in Epilepsy. (I saw Carmita at the walk the next morning also.) Many others attended. If you can identify them, would you please use the comment section and add names and affiliations if relevant? I will update the blog post periodically and add names and links to sites.… Read the rest