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
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.… 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. … 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
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.… 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.
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 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.… 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 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
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
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
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
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 Saturday, I participated in the 2014 National Walk for Epilepsy in Washington, DC. It was the fifth time I attended the national event and the Epilepsy Foundation’s 8th annual walk. Today is also international Purple Day. Purple Day was started by Cassidy Megan in 2008 when she was just a kid. (She is still just a kid.) Sometimes, it takes a kid to do something important.
Purple is our color. I know other groups claim it too, but for us, it rains purple. One day, I hope that the rest of the world will see more purple rain. I want people to see monuments and museums and memories for purple people. Some say that it takes a village, but it might take a village idiot to accomplish my goals. I might be that village idiot.
Orange is the new purple this year. Orange was everywhere. There were orange gloves, orange flags and orange superheroes too. … Read the rest
I got to tell you something…
Today is 311 day. (March 11.) 311 is a band. 311 can be many other things too, from a government help line to a fictional area code. I am posting tonight so that my Advanced Photography students can learn more about me as a photographer with epilepsy. This week I have assigned a great deal of writing. I thought I would give them the chance to create extra work for me if they wish. (It is my version of extra credit.)
I took these photographs last April in San Diego at the 2013 Sharon’s Ride Run Walk for Epilepsy. The event benefited the Epilepsy Foundation of San Diego County. This photo was taken before the photo at the top of the post.
So, what brings me here? When I look at the first photo, I realize that I see things differently than most people and that I might be cursed.… Read the rest
and the greatest of these is Love.
Ten days ago, my friend Chad Barth announced the lineup for 7th Annual Concert for Epilepsy. On New Year’s Eve, country artists Craig Morgan and Love and Theft will perform at the National Building Museum in Washington, D.C. Ten months ago was probably my worst New Year’s Eve. Ever. In two months, I could have a much better start to the year.
I have had epilepsy for 29 years as of last month, and if my father had not committed suicide nine years ago, I might have never talked about having epilepsy. Having epilepsy was a bigger secret than my father shooting himself and mismanaging my grandmother’s finances. I am still pretty awkward when discussing either topic, because there are not many role models. This leads to another scary realization — I am a role model. I wish there were many more people applying for the job, but in the valley of the problems that look like a nail… I am one of the few people who have a hammer.… 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
Dorothy Gale! This morning when I woke up in my own bed, I finally had an explanation to my recent eight day odyssey. I had survived three (?) Emerald Cities in eight days. I photographed two epilepsy awareness walks (Here are photos from yesterday’s National Walk for Epilepsy). My adventure included lions and super shuttles and service dogs. On Friday night, there was a tornado warning in Washington, D.C. Two nights earlier, the storm nearly trapped me in Chicago.
My blind faith was tested often the last eight days. When I photographed the Epilepsy Foundation of San Diego County fundraiser, I felt disoriented. I was in the valley of the blind… and I was not the person who had one eye. I needed a service dog just as much as anyone else.
On Wednesday, I left Oakland for Washington. Because of the Midwest storm, I barely made my connecting flight.… Read the rest
I am in the Washington, D.C. area preparing for the National Walk for Epilepsy. Last Sunday, I photographed the 2013 Sharon’s Ride.Run.Walk for the Epilepsy Foundation of San Diego County, and though I processed the photos, I have not fully processed the experience. During the San Diego walk, I felt the emotional cost of being a photographer with my neurological condition. I see things, often from different perspectives. I am often wrong I perceived something before my time. I create. I believe, hope and dream of flying… and I often crash. My condition has also trained me to rinse and repeat. Often. I have bruises and broken wings.
Every bird needs a little love, whether we have epilepsy and/or broken wings. Vultures, Ravens and Blackbirds need love. Sheryl Crow needs love. Some of us might have the unreasonable demand that the world stop spinning so fast, but I can still pray for love.… Read the rest