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
I have also photographed an event inside the 16th Street Station. On November 7, 2015, I photographed a fundraiser when Mayor Libby Schaaf celebrated her 50th birthday at the historic site.
This year’s season opener was historic because of the new venue, but the result was also unusual. San Francisco ShEvil Dead defeated the Oakland Outlaws 186-114. The ShEvil Dead victory equaled their win total from the three previous years.
The new venue seemed appropriate for roller derby. Old and new had found a place to interact and coexist. Nothing felt out of place.
When I watch derby on a foam surface, I forget that the sport is full of full contact.… Read the rest
Last month I photographed the Hot Couture fashion show at Oakland’s Crucible. The 2017 Hot Couture fashion show was inspired by the artist Prince and called “The Beautiful One’s.”
This is the fourth consecutive Hot Couture that I have photographed and I tried to be inspired by Prince. I created an 84 image photo gallery. Prince released the album and movie Purple Rain in 1984. “The Beautiful Ones” is a song on Purple Rain.
While “The Beautiful Ones” is not my favorite Prince song, it probably captures my feelings about him. The song captures the contradictions. He was an artist who was passionate. (“You were so hard to find”) He was a passionate artist who yearned to “paint the perfect picture.” He was like all the beautiful ones, “You always seem to lose.” We lost him too early.
When Prince died, I lost something. One year ago today, Prince performed in Oakland.… Read the rest
Originally, the November 27, 2016 performance was scheduled as Echo’s final 2016 show; however, she has scheduled three more Oakland performances for December. Echo will also appear on KQED’s Forum tomorrow with Michael Krasny at 10:00 am.
After I met Echo at an art education event a couple years ago, I have wanted to attend her one-person show. Our schedules never aligned until late last month. Even though she claims that she doesn’t “have a background in theater,” she intuitively understands performance. She is creative, energetic, funny and smart. She is engaging.
Echo may not have had formal theater training before she wrote her current play, but her journey prepared her for the stage. Echo has been code-switching since she was a young person. Code-switching requires that a person be able to read an audience and understand place and time.… Read the rest
On Saturday November 19, I photographed the 2016 Candlelight Gala for the Epilepsy Foundation of Northern California. (I have included the entire photo gallery from the Westin St. Francis with individual selections throughout this post.) Rick Harrison of Pawn Stars was the guest speaker.
Since I had my first seizure when I was 16, I have been reconstructing reality. Each time I had a seizure, I felt as if I had entered a movie or television show. In 2004, something similar happened when my father shot himself. I felt like Humpty Dumpty in a surreal reality show. Coincidentally, November 19, 2016 was Survivor Day (International Survivors of Suicide Loss Day.)
My father shot himself with a gun he purchased from a Las Vegas pawn shop. He built a Harley and drove an old 1940 Ford. Does it sound unreal that my father could have known our guest speaker before Rick Harrison became famous? What sounds real?… Read the rest
What do we remember when we say that we will “never forget?”
I spent the 15 year anniversary of the September 11th attacks at the Oakland Pride Parade. I found my church (and then lost them) and then joined the denomination that baptized me as a baby (the Methodists). I did not want to be alone this 9/11.
While many Americans will never forget 9/11, most Americans did not know someone who died on 9/11. I knew Mark Bingham, one of the passengers on Flight 93. Mark was an incredible man who has become an American icon and symbol for the LGBT community.
I met Mark shortly after I moved to the Bay Area. Mark organized a weekly football game at Golden Gate Park in San Francisco. Five years ago, I wrote more about how we knew each other. He was one of the best athletes and one of the best leaders I have known. He was many things, and if you met him, you would not forget him.… Read the rest
“If the Good Lord had intended us to walk, he wouldn’t have invented roller skates.” (from Willy Wonka and the Chocolate Factory)
On Saturday, two teams skated in circles and one team would be able to hold a trophy at the end of the bout.
Last year the Berkeley Resistance won. This year they won again.
Rocket Dog Rescue also attended the Bay Area Derby Championships. Rocket Dog Rescue attended two years ago. This leads other related questions. If God had wanted us to be alone, would he or she have created dogs? (Or if God had wanted dogs to be alone, would humans have been created?)
So, walk this way and view the two galleries from #BADchamps2016. I recommend that you play a Gene Wilder movie in the background.
I almost did not photograph last weekend’s Bay Area Derby Pride double header. I would have missed something special.
My derby photographs were not special, although I took a few decent action pictures somehow. There are two slideshows below the next two photographs.
In the second bout, Richmond Wrecking Belles defeated the San Francisco ShEvil Dead.
In the first bout, the Berkeley Resistance lost to the Oakland Outlaws.
A former skater coached the winning Oakland team, and an injured skater coached the other winning team.
Two contestants won the rainbow whip cream eating contest.
The bearded man was one of the winners. I have pictures to prove it.
After the first bout, the skaters gathered while a referee was honored. Then the rest of us were honored to be in the presence of something special.
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
Electric word, life
On Saturday April 16, 2016 I attended the 10th Annual National Walk for Epilepsy in Washington, D.C. I have attended the last seven national walks. In this post I have included at least one photo from each walk and a link to the gallery.
When I started attending the national walks, I was nervous and quiet. After a couple of walks, I became vocal and visible. Three years ago, I retreated when my wife and I separated. Two steps forward, one step….
Electric word, life
People with epilepsy refer to ourselves as a family. Prince, who died today, was part of our family. Our family feels lonelier and quieter tonight without him. Prince was known to disguise himself so that he could appear in public. As I reviewed the seven galleries, I hoped that he attended one of our events… join our secret club. I would have joined his secret club, but I did not want to impose. I was protective of him.… Read the rest
Today is Purple Day. Purple Day is for those of us with epilepsy. Canadian Cassidy Megan started Purple Day in 2008 so that people throughout the world could connect with each other and transform how people saw us. I was 16 when I had my first seizure. Cassidy is still only 17.
When I was 16, I was encouraged to hide epilepsy. I did not have a camp or event… or color. Now, I see purple often, especially on days like today. I saw a purple flower at the first Camp Coelho summer camp I visited in 2009. It was in plain sight. It felt as if it were there for me.
Having a color means that I have people. I have people who have been there for me when I need them. They are like miracles. People love me when I feel that I am unloved. People encourage me when I feel that I can’t move forward.… Read the rest
I am a roller derby photographer and my 2016 season started last Saturday. I usually photograph at The Craneway Pavilion in Richmond, California where light imitates art … or art imitates cupcakes. I forget.
Bay Area Derby created two “united teams” to compete against Sacramento’s Sacred City Derby Girls and the Santa Cruz Derby Girls. My son was unsure which team to support, so he chose his team the same way he chose his cupcake. (He chose the blue one.)
Before the evening bouts, I took my children to the Rosie the Riveter WWII Home Front National Historical Park. We would have watched the junior derby “Golden Goblet” earlier in the day, but my son played his first baseball game Saturday and my daughter danced earlier that morning.
My kids enjoy derby as much for the community and competition as the cupcakes and cookies. I continue uncovering my reasons for photographing derby… something about leaning into a bigger conversation.… Read the rest
This is my last post for 2015. I have included some words and images from my December 2015 photo shoot with Christine and her daughter. I took all the good photos and gathered them into an entire photo gallery from our time in Point Richmond, California. (I know they never match my sweet imagination, but the images are still pretty good.) I also considered beginning this post with another Oscar Wilde quote, as I did for last year’s post, but “Life is far too important a thing ever to talk seriously about.”
I have added notes on a blog about my last four blog posts. I include the notes, because sometimes “I am so clever that sometimes I don’t understand a single word I am saying.” (or I wildly steal quotes and I want to credit the author) You can read those notes at my More Than Kids site after you read last year’s blog post about photographing Christine on Christmas Day in Clayton, California.… 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
Last week I met sports journalist Justine Gubar. She wrote the book “Fanaticus, Mischief and Madness in the Modern Sports Fan.” The book is about crazy fans. Last night I watched the Major League Baseball playoffs. Toronto fans threw beer cans and other debris onto to the field after being upset with an umpire’s call (but mostly the fans hit other fans, including kids). Toronto eventually won, otherwise the fans might have thrown kids. Last weekend, I photographed the Bay Area Derby Girl roller derby league championships. Some fans cheered. Some drank beer. Some fans brought their kids (or some kids brought their parents), but nothing unusual happened… except that The Berkeley Resistance won their first league title.
You can view more photos of Berkeley’s first league celebration and 161-143 victory over Oakland at the gallery here.
You can also view the third place gallery between The Richmond Wrecking Belles and The San Francisco ShEvil Dead.
During half-time of the championship, adults played a version of a kid game.… 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
I would do anything for love (but I won’t do that) – Meat Loaf (1993)
Links to photo galleries included at the end
I almost did not attend the 2015 D1 WFTDA International Roller Derby Tournament in Tucson, Arizona last weekend. Even though I love roller derby, I was scared. At the beginning of September I visited my neurologist after listening to another Oliver Sacks interview. I suspected that I had prosopagnosia (face blindness). I thought that I was losing my mind and I was afraid to spend three days in the desert meeting (and re-meeting) people, but I couldn’t let my fear stop me.
I remember people. I just do not remember their faces. I remember Joy Collision when she skated at the 2012 Western Division Regional Tournament. (she is pictured above greeting friends). I remember that her number (747) is the same as a jet. I know that Joy Division became New Order after the lead singer committed suicide and I know that Joy looks like the person who sells avocados at my local farmer’s market (though I am probably wrong about this last one). When Joy wears the red 2015 WFTDA Tucson Playoffs shirt and maintains that expression, I will recognize her.… Read the rest
This post might turn out like my dinner tonight. I grilled a cheese sandwich with turkey, garden tomatoes and avocado. The sprouted bread fell apart, the crust became hard and the inside became mushy and cheesy. It tasted good, but I would not serve it to friends. While I rushed my dinner, I have spent several days trying to write this blog post.
I have yet to digest my emotions from last Saturday.
Before I attended Saturday’s bout between the Santa Cruz Derby Girls Bombshells and the Bay Area Derby Girls Team Gold, I planned a simple post that included galleries from two previous bouts. I would discuss the community based organizations that the roller derby teams supported at recent events and I would mention how my children love attending roller derby too.
Then I met Bryan Stow.
I am a Dodger fan. I have loved the Dodgers since I was a little kid and moved to Fresno from the San Fernando Valley. When I was a child, I would sit on the floor and listen to the radio at night.… 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
I attended the 37th annual San Francisco Carnaval Parade on Sunday May 24, 2015. This was the third consecutive year that I have attended as part of the Fogo Na Roupa contingent. I am allowed to walk the parade route with my camera, because my eleven year old daughter dances. I took some photos again this year.
There were more than sixty groups participating this year. We arrived about two hours before the parade started so that we could park and find our spot.
I probably enjoy the parade preparation more than the actual parade. Photographers and groups mingle with each other. The dancers rehearse and complete their costumes.
Some participants finalize their floats.
Once the parade began this year, I still enjoyed myself. It’s Carnaval.
Even the dogs are friendly.
People of many different ages and appearances participate at Carnaval. Carnaval provides a positive experience for many body types and abilities. You can dance to your own drummer or you can dance with a bunch of different drummers.… 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
This is going to be a short post, but I could probably write a book… except I am not an author. (Sometimes I forget that I am not an author and I write too much.)
Last week I attended an event where two best-selling authors, Gayle Forman and Jay Asher, promoted suicide awareness and I remembered that I am a survivor of suicide. It is not as though I had forgotten, but sometimes I become disconnected to that part of my life. It is easy to forget because I belong to many other families and I am involved with all of them. Besides, there are times when I forget that any of this is real. I listened to a couple fathers who lost daughters to suicide. That made it a little more real too.
One of my college friends recently posted an Abraham Lincoln quote (or maybe it was attributed to Mark Twain) that people too easily accept that which is posted on the internet.… Read the rest