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
I traveled to Washington, D.C. again for another epilepsy event. The Ninth Annual Walk for Epilepsy was held near the Washington Monument on Saturday morning April 11, 2015.
After I received my t-shirt at the walk headquarters downtown, I walked another block to a bookstore where Tavis Miley was speaking about his new book, “My Journey With Maya.” He explained how Maya Angelou had helped him find his way when he was lost. At one point when he was especially lost, he asked her how to find his way. He remembers her response: “We find our path by walking it.”
There are many reasons that I walk. I walk because others can’t. Some people from my community have died suddenly. Some have died slowly. I walk because some are unable to do so. I walk because some day I will not be able to do so.
I walk because others have gone before me so that my path is easier. I walk so that others may find their path easier than mine has been.… Read the rest
The Bay Area Derby Girls opened the 2015 regular season on International Pi Day. Berkeley won the first bout against San Francisco (photo gallery here), and Oakland defeated Richmond in the second bout. (photos here.) Four people competed in a pie eating contest, which the audience won. The derby and sunset were grand, as was the marching band. I searched for circles.
Pi Day is a real thing. In case you forgot the formula for measuring the area of a circle or cylinder, you can find it on the page International Pi Day page. I learned the origin of the joke that “Pies aren’t square; they are round.” I also learned that there was a such a thing as a Pi joke.
I am too literal to laugh at math jokes. I tried to photograph the first several numbers of Pi, but I couldn’t find the necessary skaters after #31. (I wanted a series of skaters so that I could reproduce 3.14159…..… Read the rest
Before I continue writing about Hot Couture 2015, I should include a disclaimer. I wore a beanie both nights to the annual fashion show at The Crucible in Oakland.
I know enough about photography that I thought about “The Fashionable Gordon Parks” and his fashion photography while I shot and edited. Parks photographed runways without flash photography. He used movement to his advantage. His New York fashion pictures captures something real and artistic. Perhaps that is the nature of fashion. It is art and reality.
Last year when I photographed the fashion show, I was inspired by designers. Occasionally I return to my three posts from last year when I need motivation.… 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
“The beauty that shimmers in the yellow afternoons of October, who could ever clutch it?” Ralph Waldo Emerson
I found the Emerson quote in the new National Geographic book Life in Color. I bought the book a few days before this year’s Treasure Island Musical Festival. I photographed the two previous festivals and I was looking for inspiration. TIMF is a colorful festival and I needed expert photographers to explain color.
I attend this event with one of the vendors, so I do not shoot many of the musicians. When I attended the first time, I was disappointed, but I quickly realized that I was able to see the event better. This year, I took more than 700 pictures each day, which is not many considering how many musicians performed. You can see my edited pictures from 2014 day 1.
I spend most of my day with the artists at the Painted Wonderland body paint booth. These are not your ordinary face painters. Each artist creates an individual design for each person who enters the booth.… Read the rest
October 11, 2014
Santa Cruz, California
Last weekend I photographed the Santa Cruz Bombshells’ final bout of the season. Santa Cruz hosted the New York Bad Apples at the Kaiser Permanente Arena. Because the bout was held in October, there was a costume theme. Because this was roller derby, a costume theme seemed a little redundant… until I participated.
Almost every roller derby skater and official adopt a persona and name. I have a derby name, (it’s P Giddy), but I have not really lived up to it. I wondered if a costume theme would negate personas. Would some people dress as normal people? What is a normal person? Am I a normal person? Instead, it was double fun.
The previous weekend, I bought an old train conductor’s hat in downtown Oakland and decided that I would wear a vest I bought twenty years ago. I also bought an antique lighter that I can use for business cards, but I do not really use business cards.… Read the rest
At the high school where I teach, students wear shirts that say, “You are stronger than you think.” Besides having epilepsy, I have dyslexia fueled by paranoia, so that the first few times I read the shirt, I thought it said,
You are STRANGER than you think.
As a person who has lived with epilepsy the last 30 years, I am probably a little stranger than I think I am. I do not always play by the same rules as everyone else, because I am unable to do so. The rules were not designed for people like me, so I have been forced to go my own way. In my effort to fit in, I have become strange. I am stranger than I think… but here is the joke. Everyone is a stranger. Everyone is different. It is as if we are, to paraphrase a Jack Johnson song “Stranger Together.”
When I had my first seizure 30 years ago, I was a high school student.… Read the rest
Two years ago I took an image that I consider my “most important photograph.” Even though I consider it my most important, it was not the best picture taken with my camera that day. While I consider photography important, I did something more important than take pictures that day. I handed my camera to a boy while we walked on a bridge.
Two years ago, I wrote about Xander’s Crossing. The bridge connects me to a support group for mothers whose children have died. After my father had committed suicide, I chose to help people who were isolated, and somehow I found myself on this bridge two years ago.
I was also a journalism educator. I knew that journalists were taught to keep their distance when covering stories. I also knew that some training conflicted with the goals of journalism. First, journalists who “kept their distance” were most often the same journalists who invaded families’ personal space.… Read the rest
On Saturday September 13th, 2014, I photographed the 1st Annual Taste fundraiser for Girls Incorporated of Alameda County. The main event was held in the Rotunda Building in downtown Oakland. Guests gathered at the Girls Inc. main headquarters across the street before dinner and the live auction. (HERE ARE THE PHOTOS)
I asked to photograph the event. I had photographed the 2012 Women of Taste fundraiser, and I was impressed with the organization. Though the 2014 version of “Women of Taste” was different, I still wanted to contribute. I explained some of my personal reasons in my blog post two years ago. Those reasons still exist.
Before the event, one of my friends asked me why I wanted to photograph this year’s fundraiser. I never know how to answer these types of questions. Usually, I answer honestly, but I omit some of the more compelling reasons. Why was a Women’s Studies major?… Read the rest
This recent Labor Day weekend, I took my kids and my camera to the Oakland Pride Parade. We walked with our Episcopal Church and several other religious groups. Many mayoral candidates, including Mayor Jean Quan, attended the parade. I took pictures. (HERE is my photo gallery!) While I was walking around before the parade, somebody asked my affiliation. Perhaps the person wanted to know if I worked for a publication or politician. I interpreted their question differently, “How did I become a member of a church group at a pride parade?”
Here is the oversimplified version:
I joined a political campaign, because a politician offended me by something she said in a church.
I joined a church because of something my candidate said while campaigning for Congress.
Yesterday was Labor Day. Besides being an official holiday, Labor Day Weekend is the unofficial last weekend of Summer. When I was a kid, Labor Day was the last day before school.… Read the rest
Last Saturday, the B.A.D. Girls held their 2014 women’s flat track roller derby regular season championship. Roller derby has become a popular sport throughout the world. B.A.D. is one of the top leagues in the Women’s Flat Track Derby Association, or WFTDA. The WFTDA lists leagues on their website.
I am an official photographer for the Bay Area Derby Girls. I really do not know why I don’t smile more often. After bouts, I post photos to my photo site (www.AflatTrackMind.com and to my little facebook site). I write blog posts here. I am going to write less this time and just post links and photos.
Derby fans are wonderful. They really care. The best derby fan is probably an eleven year old girl. She is just off to the right of this picture. You can find her in the photo gallery if you click the picture or go here.… Read the rest
Some of you may know that I have epilepsy. Some of you may know that next month I will have had epilepsy for thirty years. Others may know that I have been an advocate and spokesperson for several years. I speak, write, photograph and wear t-shirts. I was a Featured Blogger on the old Epilepsy Foundation site. Sometimes I am interviewed by news organizations. Sometimes celebrities talk to me. Other times, I am completely ignored and disrespected. It is possible that I forgot to shower and/or brush my teeth, which I must have forgotten to do so often the last year that I have decided to step back as a spokesperson.
To help with my decision, I read some of my old posts. Five years ago I wrote about my first seizure. Below is an excerpt.
There were many reasons that I chose to hide having epilepsy. This is difficult to explain without sounding like a whiner.… Read the rest
So, today is the 10 year anniversary of the day my father committed suicide. I was going to write a very dramatic blog post about how tragedy has visited my life too often and my life was unfair, but a funny thing happened on the way to this ten year anniversary. I started to see my life differently.
If life is unfair, I have the advantage, at least for today.
Since I met Brad Paisley two weeks ago, Robin Williams committed suicide. Williams was 63, the same age that my father was when he committed suicide. On August 14, 2014, Paul McCartney played the last concert at Candlestick Park in San Francisco. Tonight I danced with a kind woman from the Havin’ Fun Bunch. I returned from photographing roller derby just in time to hear the song, “When I’m 64.” The Havin’ Fun Bunch had a Disney themed party this year. Every year their mission is to have fun.… Read the rest
If Music is the best medicine, what do you take with a Whiskey Lullaby?
So I went to see Brad Paisley on Saturday night at the Sleep Train Amphitheatre in Wheatland, California. When I say that I went “to see Brad Paisley,” I mean that I went to talk to him and photograph his show. Paisley contacted me after I had written a blog post regarding a seizure joke he made on live television. Paisley seemed genuinely apologetic during our online communications, but until I met him in person I doubted if he had even sent the messages.
When people ask me what is it like having epilepsy, I can now tell them about the Brad Paisley Experience. Having epilepsy is not normal. Having epilepsy is watching television and hearing one of your favorite musicians say something that trivialized a deadly health condition. You will want to protect your friends who have seizures and your friends who love country music.… Read the rest
I first published this blog post on Saturday July 19, 2014, one week after the Bay Area Derby Girls regular season double header at The Craneway Pavilion in Richmond, California. The bouts decided which teams will skate for the regular season title on August 23, 2014. You can see the entire photo gallery here.
I chose photos that highlighted the work of the officials. I liked the idea of my post, but my words bored me. I wanted to say something better to honor the contributions of derby officials. I do not know if my edits will improve the article, but at least I can think about how I can express myself better for the next time.
At derby bouts, I wish I could follow myself around and take my picture. Nearly everyone who participates has a derby name and persona. I am P Giddy. P Giddy is a great name, but I struggle putting on my persona.… Read the rest
If you missed Part 1, “If I Could Write A Letter to Brad Paisley,” you can click the link and read it. Mr. Paisley or someone who can control his Twitter feed contacted me which is not as important as the issues surrounding imagery and people with disabilities. I am going to continue the discussion here. Originally, it was going to be called Part II – Glendale Pronounced Glen Dale (Sweet Home of the Best Guitar Riff). I probably need titles that are less confusing.
When you wish upon a rising star,
Makes no difference who you are…
UNLESS YOU ARE DIFFERENT LIKE ME
Pt 2 – OK, I’ll bite
Why is imagery so important? Pictures, movies, and songs can show people what is possible. Disney owns ABC (and ESPN.). ABC televises the show Rising Star. On Rising Star, one of the expert judges joked that a performer probably gave some viewers a seizure… or something close.… Read the rest
You’re not supposed to say the word Epilepsy, in a song.
It’s just another Saturday night and you are probably busy. You are a big country music Celebrity, and I am just one of millions — one of millions of Americans living with epilepsy, so I do not expect you to read this letter any more than you expected your 17 year old self to hear “If I Could Write A Letter To Me.”
Click on image to launch slideshow
You see, I am a member of a country club that has “the most loyal fan base in the world.” I have modest talent and a mountain of faith that motivates me to warn you even though I have a history of being ignored. If I were to write a letter about epilepsy it would probably be stored on an old Epilepsy Foundation website. I would hop your fence and hand deliver this message personally if it would help, except everyone knows that only happens in fairy tales.… Read the rest