Bryan farley's Posts - Epilepsy Foundation

Learning From Roller Derby

2013-04-01T00:30:59.000Z

I decided to write about roller derby and the epilepsy community after Karen St. Marie posted that the Lowcountry Highrollers of South Carolina chose the Epilepsy Advocates as the featured charity for their recent bout. During the last year I have grown to love women's flat track roller derby. I have even become a derby photographer. (If you are interested in the story, read my photography blog post.) The derby community is growing quickly, and for reasons that those of us in the epilepsy community might want to consider for ourselves.

First, women's flat track derby welcomes everyone. Sure, women's flat track is for women (and it might even be considered "alternative"), but flat track encourages everyone who supports its mission to become involved. When I think about their attitude, it is probably described like this, "If you do not like a certain social group, you are probably on the wrong planet." Is the epilepsy community as welcoming?

There is a lot of music at bouts. (Games are called bouts.) Old people bring signs and cheer for their favorite team. Kids attend bouts and cheer for their parents or nieces. Since women of every background play derby, people from every background also attend the bouts.

At the last bout I attended, a military unit attended. (I didn't ask who they were, but one of the members had played for the Las Vegas team. Maybe she was on active reserve and still a member of the military and the derby team.)

Actual cheerleaders cheer at halftime of some bouts. This seemed unnecessary since everyone cheers, but even traditional cheerleaders are accepted. Oh, and the teams cheer for each other after trying to knock each other to the floor. Does the epilepsy community support other agencies? Do we work together? I do not know.

The second lesson: everyone supports each other after the bout ends. I mean, they really support each other. You must attend a bout (or join a facebook fan page) to understand the fans reach. Derby fans and players promote the league on social media. Players from other teams tag each other on Facebook. Leagues help each other. Sure, they compete, but they help each other too. Within minutes of posting photos, players from all over the world comment on my photos AND I AM A NEW DERBY PHOTOGRAPHER. The epilepsy community is bigger and slower. How many people will comment on this blog? I am not asking because of my big head, but I am one of the featured bloggers.

Three, derby celebrates the players. I am not suggesting that everyone bring big headed posters to our events, but we could start celebrating people with epilepsy. The team with the big heads finished 9th out of 10 teams at the 2012 Western Region Tournament. The players were still the stars... even the 9th place team that traveled from Utah to the Bay Area. Big Stars.

If you are curious about the South Carolina event, see a recap with photos here.) You can also view Jonathan Stout's (BadJon) webpage. He has a derby video on his regular photography site.

Today is also the one year anniversary of our last National Walk for Epilepsy. I photographed the walk last year. I am including my photo gallery. In six years, the epilepsy community has become more visible. What can we do to capitalize on a big event?

Here are is a little photo gallery of derby people, with some of the photos I inserted into this blog. Derby fans are creating new rules and creating a popular community. What are some new rules that we can create for the epilepsy community? What should we do, or what COULD we do, to promote visibility?

Visit to the Epilepsy Foundation of San Diego County

2013-02-26T00:00:00.000Z

I have had epilepsy for more than half of my life and until last week when I visited the Epilepsy Foundation of San Diego County, I had never visited another local affiliate. I have been to the national Epilepsy Foundation across the country. I have also visited the Epilepsy Foundation of Northern California, which is my local affiliate, but despite all my traveling, I never visited another affiliate.

During my brief visit to the San Diego office, I noticed how this visit was different from my first visit to the EFNC headquarters. Several years ago, I took twenty minutes to get from the parking lot into the main office. I was nervous. I could barely walk to the elevator. I struggled to breathe and talk. I offered to help, but more out of habit than purpose. I was limited more by fear than by having epilepsy.

When I walked into the San Diego office, I felt more like myself. Ginny Chacos had helped me feel welcome before I visited. I felt so welcome I basically arrived unannounced and started "overcommunicating" with Emma Lawson, the Programs and Communications manager. (Fortunately, for the foundation, Emma is good at her job and knows how to deal with people like me.) My offer to help photograph their 2013 Sharon's Ride/Run/Walk was sincere. I was aware of the foundation from many sources, especially fellow featured blogger MaryLou Connolly, who also sits on the San Diego foundation's board.

There was another difference about this foundation. It was visible from the street. Whether intentional or not, the foundation could be seen from a busy street... from The Boulevard. For those of us who have an invisible disability, this may be especially comforting. The San Diego fundraiser is also visible. The route of their next fundraiser is in a visible public park. The event raises awareness and the ride.run.walk raises money.

Life is not simple. I am not simple. While I felt more like myself during the recent visit to the Epilepsy Foundation of San Diego, I was myself when I walked into the Epilepsy Foundation of Northern California the first time too. Sometimes I am scared... sometimes I am scarred from falling and getting back up and falling again. These feelings are probably universal. Life is also difficult. People want to be invisible and we want to be seen. We also want to be found, but sometimes we must go looking for ourselves.

Thank you to the people of San Diego. I hope I can repay you for your service.

Bryan Farley's Epilepsy Directions and Directors

2013-01-29T17:51:48.000Z

Before 2012 began, I wrote about the upcoming year and asked that our community commit to changing something within our community. You can read the previous post if you wish here. I committed to improving our community's ability to communicate online. I wanted us to help us be more visible and more effective. While I succeeded occasionally and asked important questions of the right people, I think I have not met my goals, so I am changing strategies.

You may have already noticed that I do not participate as much here as I had in the past. When I started writing I asked the question,

If I talk about it, will you listen?

This question has not been answered.

During the last year, the Epilepsy Foundation of America and Epilepsy Therapy Project merged. Many of us have used this site and epilepsy.com to communicate with each other. This seems like an important merger, and perhaps it happened, because many people listened to us. We wanted to communicate better. We were frustrated by the inability of our leaders to work together. Maybe this will be better.

But I still think they are missing something.

There is a new advertising campaign. I think it is called 1 in 26. Powerful. Memorable. Simple. The link about the merger mentions the campaign. The link also mentions 48 affiliates and a national HQ. Assuming all 48 have an Executive Director, it is time for my someone to ask, "how many out of 49?"

And since this probably isn't the place to ask that question, I will be asking it elsewhere.

A Million for Your Thoughts

2012-11-30T17:30:00.000Z

Last November I published a video for Epilepsy Awareness Month.

You can see the video and the comments at the link above. For the 2012 Epilepsy Awareness month, I published another video. You can watch the 2012 video with my Vimeo posts on this site now that the video has been approved.

Please share you ideas in the comment section of the video.

(edited on Dec 3rd)

Dog Days of Epilepsy

2012-10-05T01:30:00.000Z

September 29 was the anniversary of my first seizure. Though I was aware of the date, I was busy all day and I did not have time to write. I thought I would wait a few days and nothing would happen, because, lately nothing much has happened. I should know better.

This morning I opened Facebook and noticed that today is St Francis' Feast Day. (Many people know St. Francis as the Saint who allows people to bring animals to church once a year... that's about all I know too.) Since I had planned to write about my doctor and therapy dogs, I appreciated the coincidence.

After reading about St. Francis, I learned that the Epilepsy Foundation and The Epilepsy Therapy Project announced a merger today.

The old and new combine, but which is new?

Dr. Robert Fox Therapy Dog - Images by bryan farley

I have an amazing neurologist. It may have taken me at least twenty years to find a good neurologist, but to be fair to all the other doctors, I was not a great patient my first twenty years living with epilepsy. I often read people talk about bad doctors.

How many of us are good patients? How many of us have become old dogs unwilling to learn?

Recently, my doctor began bringing a therapy dog to visit patients at a hospital and I met the dog during one of my office visits. The dog is trained for therapy. Many sick people love dogs, but not all dogs love people. Those of us in the epilepsy community have become familiar with seizure dogs. (I included a story about Evan Moss's dog.) Seizure dogs are helpful. They are require more training than hospital therapy dogs.

What will be the future for dogs and our community? I live in a part of the country where companies act as if they have done something innovative by allowing their employees to bring their dogs to work. Is this innovative? Should the first dog into a company be a service dog? Have I become too sensitive? Will the larger Epilepsy Foundation research animal therapies or will we focus on chemical therapies?

What do you think? Time to bark!

Americans With Disabilities Act Anniversary

2012-07-27T03:30:00.000Z

July 26th is the anniversary of the Americans with Disabilities Act. In 1990, the ADA was signed into law.

Two years ago, we celebrated the 20th anniversary. Last year, I wrote about the ADA. I almost forgot about the ADA this year.

What does the ADA mean to you? Would you be willing to sue? Do employers want to follow the law? Do you feel included?

The Savage Side Effects of Medicine Companies

2012-07-11T02:30:00.000Z

When those of us in the epilepsy community discuss medical side effects, we often sound as if we are talking about Snow White and the Seven Dwarfs. We wonder if we have become Dopey, Sleepy, Angry, Sardonic... Oh, I forget the other three. It must be the medications.

Side effects are confusing. Is it the medication that makes us irritable or are we angry because we experience discrimination? Are we experiencing seizures or side effects? I wish someone like Michael Savage would read my blog and diagnose my side effects. He is like a psychic epileptologist. Dude knows side effects.

Who studies side effects when new epilepsy therapies are explored? Do independent scientists study the medications or do the pharmaceutical companies study the side effects? Is there more money spent marketing products or advocating for patients? What happens when there is a conflict between the side effects and profit?

In the last thirteen months, two companies have plead guilty to criminal charges. Early this month, GlaxoSmithKline agreed to pay 3 billion to settle criminal and civil violations. Last year, The Epilepsy Company, settled criminal and civil charges with the Department of Justice. The DOJ investigated GlaxoSmithKline's practices from 1997 to 2010, according to GSK's press release. According to UCB's own press release, the issues under investigation occurred more than seven years ago. Even though the events occurred years ago, the people working at both companies are affected now.

For those of you with epilepsy, what are the side effects of learning that the company that made your epilepsy medication engaged in illegal activity? How do you feel when you learn that someone lied to you when you need them to survive?

Epilepsy and Perspective

2012-05-28T09:30:00.000Z

A popular Mahatma Gandhi quote illustrates the slow progress of social movements.

“First they ignore you, then they laugh at you, then they fight you, then you win.”

I joined the epilepsy social progress train while we were being ignored. Because my life changed suddenly, I did not consider myself fortunate at the time of my first seizure, but life could have been worse. Before we were ignored, we were exterminated, exorcized and sterilized.

We were not merely ignored. We were hiding.

Talk About Epilepsy Perspectives (Slide show)- Images by bryan farley

After years of hiding, my family visibly supports me. At the 20th Annual Epilepsy Awareness Stroll organized by the Epilepsy Foundation of Northern California, my children created our hand-made team T-shirts. We were "The Panthers for Epilepsy" (my 6 year old was a Panter for Epilepsy).

After the walk, my mother and I discussed how my first doctor prescribed that we hide my condition. Even if the doctor wanted to encourage me to attend a summer camp or awareness walk, where would I have gone? Now, parents bring their children to the stroll each year. Some parents invent new products, such as the SmartWatch to monitor seizures. Other young people have founded the Epilepsy Youth Council. It is safer and healthier to participate.

How can we continue to make it more safe? What can we do to encourage more participation?

2012 National Walk for Epilepsy and Social Media

2012-04-11T21:00:00.000Z

On March 31, 2012, I attended my third National Walk for Epilepsy. This year's walk was the 6th Annual National Walk for Epilepsy on the National Mall. Seeing thousands of people inspired me. Being seen motivated me to do more for our community so that we can connect to all those who feel isolated.

At the walk, Epilepsy Foundation staff asked walkers who EFA could improve the website. At the booth next to the website group, the social media team photographed walking teams so that pictures could be posted on our EFA Facebook page.

How do you think we could improve the site? How can we have better social media programs or strategies? What would get you more excited to share more and share the site more often?

2012 National Walk for Epilepsy Community - Images by bryan farley

Above is a slideshow of more than 200 walk photos. If you attended, please view and comment below if you see yourself. I will upload these to the eCommunity site or the EFA Facebook page so that everyone can have access to these. You can also take the blue link "2012 National Walk for Epilepsy Community" and share the photos.

Please answer the question below. What do you want in the website and social media for EFA and the National Walk?

2012 Epilepsy Foundation VIP Heroes of Epilepsy Photography

2012-04-06T21:00:00.000Z

My Featured Blog is called "If I Talk About It, Will You Listen?"

For the last year, I started all my posts with the first two words "If I." I developed the idea during last year's walk when I suspected that some people emphasized talking without interacting. As difficult as it is to talk about it, listening is difficult, especially to the reasons behind the silence.

Talking does not necessarily heal, but denial rarely helps. There is power in being heard. Sometimes, we can become more healthy by talking about it and by knowing others are talking for us.

The evening before the 6th Annual National Walk for Epilepsy, EFA honored Heroes of Epilepsy at the National Museum for Women in the Arts. Eisai, the pharmaceutical company, sponsored the event. Two people were acknowledged for moving us forward. Do you know anyone in the slideshow?

You can also view my blog at bryanfarleyphotography.com. Feel free to post at my blog too. I would like to add links to everyone who attended. There were many people at the event who help keep us going. I would like to talk about them too.

If an Expert and a Thought Leader had a baby

2012-03-22T03:30:00.000Z

We do not need thought leaders. We need thoughtful leaders.

I ask a lot of questions. Sometimes, I ask whimsical questions about experts having children. Other times I ask serious questions about how people become experts. I hope you will know which questions to take seriously.

What qualifies someone as an epilepsy expert?

What is the difference between a leader and a "thought leader?" Is a thought leader someone who thinks about leading?

As we approach Purple Day and The National Walk for Epilepsy, I caution our community about how we relate to experts. While I believe that we can learn from people who have been called experts, I also believe that epilepsy experts lack knowledge. Often, epilepsy experts do not have epilepsy.

"Thought leaders" present a different problem. Thought leaders seem to confuse thinking with leading. (If you have not heard the term "thought leader," you may see it more in the future.) I do not trust people who call themselves leaders, especially for generating thoughts without action.

You probably should not trust me either. Some days, I am merely an expert thought leader. I have ideas. Big ideas. I have Big Ideas for others to do. It's not leadership.

We need something different. We do not need to "Think About It." We need action.

What type of leadership do you want? What can we learn from experts? What can experts learn from you? What are you going to do about it?

If you could Leap tall buildings in a single bound

2012-03-01T03:30:00.000Z

Today is Leap Day. Every four years, February adds a day to the calendar. People with epilepsy are more familiar with losing time. We do not "spring forward." We fall backward and lose seconds or days.

I have two children. My daughter is in second grade and my son is in kindergarten. The students wear a simple uniform at their public school, except on the last day of the month. Today, my five year old son dressed as a superhero. Between his outfit and the "holiday," I was inspired to write this post.

What super power have you received from having epilepsy? If you could have a super hero power, what would you want? Would you think big? Small? Would you want to leap tall buildings? Would you want to stop time?

If Gabrielle Giffords Were The Saint of Congressional Approval

2012-02-15T04:30:00.000Z

Would she inspire a War on Bad Behavior?

Congressional job approval has reached an all-time low. According to a Gallup poll released on February 8, 2012, only 10% of Americans approve of Congress. With former United State Representative Gabrielle Giffords of Tuscon, Arizona leaving Congress, how low will job approval ratings drop? Gabby may have been the only member of Congress that Americans liked. Even fellow politicians liked her.

At the 2012 State of the Union address, politicians from both parties chanted her name. The President hugged her. It seemed that every politician praised her ability to inspire bipartisanship. After she retired, the US Navy named a warship after her. Navy Secretary Ray Mabus called Giffords "inspired." Gabby inspired politicians to be better. She inspired solutions and the ability to see. Unfortunately, she created new problems. Health care became personal, maybe too personal.

Gabby's story follows a common script. "Inspirational" is just another word for good-bye.

Since Gabby Giffords retired on January 25, 2012, political discourse around health care has become more tense. Some members have used the term, "war on women's health." More people are talking about the "war on religion now." Even the Susan G. Komen Foundation, which had been the model for non-profit non-partisanship, found itself in a heated argument with Planned Parenthood. Maybe politicians always talk this way, and I am just more sensitive to it, because I hoped for more after Giffords' departure.

Our unpopular politicians fight often. They start armed conflicts without declaring war, but they launch Wars of Incivility days after honoring Gabby Giffords. We do not need any more politicians who want to fight each other. We need more people who will fight to get along.

Originally I posted this on Saint Valentine's Day. (I am editing on February 16) St. Valentine is the patron saint of epilepsy. He is also the saint of bee keepers and lovers. Is there any room in his quiver to be the patron saint of "Good Congressional Behavior?"

Or do we need a new saint?

If You Could Thank Someone Who Changed Your Life

2012-01-12T04:30:00.000Z

Often eCommunity members use our site to share our struggles. I relate since many of us struggle in isolation and we have found a place to connect with others. Unfortunately, we might overlook those moments in our life when someone helped us. We might forget the people who have helped us.

In this post, I want to encourage people to thank someone who helped them become less isolated

One year ago today, I met Tony Coelho. Meeting Tony was memorable. I never been more nervous before meeting someone. I had to remind myself that he was just a person. At the same time, meeting Tony felt normal. We shared a similar history, except he shaped world events and I felt awkward.
Tony-Coelho-National-Walk - Images by bryan farley

I saw Tony at the National Walk for Epilepsy where I photographed him before the walk. We spoke again and this time I was not as nervous. He seemed like an old friend.

In the few years since I have started revealing that I am a person living with epilepsy, others have helped me too. I still remember connecting with my local Epilepsy Foundation of Northern California. (I was afraid to talk.) When I visited the national headquarters of the Epilepsy Foundation of America, I was often dizzy, because I forgot to breathe. Today, however, I wanted to thank Tony. He seemed to understood his role as a leader. He knew that there are times when someone must stand on the stage in front of thousands of people ... and there are other times when a leader must spend a couple quiet hours grooming future leaders.

If you could keep one new year's resolution

2011-12-29T04:00:00.000Z

Having epilepsy has helped me prioritize my life. Even though I pretend otherwise, I have realized that I can't do everything. Being a parent, a husband and a photographer has also helped me prioritize. For 2012, I will narrow my focus further.

Rather than creating a list of "things I would like to do," for the epilepsy community during 2012, I have decided to choose one New Year's Resolution and put my energy into the resolution. My resolution will guide me. I will still have a list of things I would like to do and I will probably do many of them, but not at the expense of my primary resolution.

I am encouraging you to do the same. Make one resolution. For our community. Keep your commitment to yourself. If we all keep our main commitment, we will become more powerful.

Throughout the year, we can monitor our success. We can seek and extend help. At the year, we can reflect on our growth.

I resolve to help our epilepsy community learn how to use online tools to become more connected to each other. Our community is at an exciting time in history. We are meeting each other. We are learning about others. We are growing and becoming more powerful. But our virtual voices are barely audible as we end 2011. At the end of 2012, where will we be?

What would you like to do? What interests you the most? Will you share?

If National Epilepsy Awareness Month Stops Now

2011-12-01T20:30:00.000Z

Epilepsy Awareness Month reminds me of some of my church holidays. Very similar to Lent, I spend much of the month reflecting about what it means to be a person of epilepsy. Each year is also slightly different depending on external events. Some years I celebrate more. Other years I reflect more about the journey. Current events often affect each holiday too.

This year, I could not escape the Penn State University and Syracuse University Men's Athletics Programs. Both major colleges won national titles while coaches abused children and encouraged people to remain silent. When people began speaking out, they were called liars. The "liars" were blamed for bringing awareness.

Once people began believing the "liars," a new blaming tactic evolved. The folks who had been liars were often blamed for not speaking earlier. AND THEN, when we learned that the children or coaches HAD spoken up earlier, they were blamed for not speaking up enough or to the right people.

With that backdrop, I created the video below. I know that sharing our experiences can transform the world, but I also know there is a cost. Some people will call us liars. Some people will wonder why we waited to share. We might also question ourselves. We might also realize that our past does not reflect our present. We may be more powerful now than we were as children.

We also might not want to share. Here is the link to the video post and below is the video. After the video, I close with a comment and question.

I am a Person Who

Probably because of all the sports events, I kept thinking of a sports quote during the entire month of November. I know the quote as "The most important play is the next one," but I am guessing that all of these quotes are derivations of Ben Hogan's famous golf quote, "The most important shot in golf is the next one."

So I wonder, "What is the most important day to spread awareness?"

If Alexander The Great Talked About It

2011-10-21T17:30:00.000Z

This month I have been singing the long Little Boxes by Malvina Reynolds. If you watched the Showtime television series Weeds, you may know the song. Even though the song was written almost 40 years ago, the lyrics still seem to describe how we isolate and identify ourselves today.

Little boxes on the hillside,
Little boxes made of ticky tacky,
Little boxes on the hillside,
Little boxes all the same.

...And they all have pretty children

And the children go to school,
And the children go to summer camp
And then to the university,
Where they are put in boxes
And they come out all the same

You can see the entire Little Boxes lyrics here.

When I hum Little Boxes, I realize that our protective shells can hide our differences. We come outside when we appear the same as the other children. We know the rules of the neighborhood and we expect others to stay in their boxes too. This creates problems.

For many of us with epilepsy, we live at the intersection of suburbia and silence.

We hide in our little boxes. Sometimes we step outside pretending that we are merely epileptics OR people with epilepsy. We say that epilepsy does not define us, but we often are unwilling to bring the rest of our lives into the conversation. I wonder if we are epileptics/people with epilepsy at work or church or politics or school or whatever little box we go to when we leave the little epilepsy box.

In my blog title I asked about Alexander the Great, because he is often sited as one of those important people who had epilepsy. I guess he is supposed to inspire us to do "Great" things (and if we so desire, conquer other people.) On epilepsy sites, Alexander the Great has epilepsy. Alexander the Great is also listed as a hero for the LGBT Community. As one of the LGBT 2011 icons, many of Alexander's historical achievements are listed. Do you think they included conquering with epilepsy?

I do not blame the oversight. We are all pretty new at Talking About It. (Actually, the LGBT community started talking about it a few years before we did. The phrase, "Talk About It" was the theme for the three years 2005-2007 for National Coming Out Day. Besides, humans pick and choose which communities to identify. This is especially problematic for people with epilepsy, because we are part of every community.

People with epilepsy live in every Little Box.

Stepping outside one's little box is difficult. We are not the same. People will judge me for having different opinions. They will judge me if I Talk About It. How do I know people will judge me? Because I judge them. Listening is more difficult than talking. Acknowledging differences is difficult.

Some people will misunderstand me and assume I am claiming that we must accept everyone and agree with everyone. Not at all. I am arguing that we become stronger when we acknowledge everyone. People who are gay have epilepsy. People who are not gay have epilepsy. People who support gay rights have epilepsy. People who are opposed to gay rights have epilepsy. I am not arguing that you change your opinion about where you fall on that spectrum. I just claim that you acknowledge it.

I chose to write about LGBT icons, because I knew one. I knew Mark Bingham. He died on Flight 93. He did not have epilepsy, but he was gay many who fit into many little boxes. Besides being gay, he was a Republican. He was also a national champion rugby player. You may not be gay, athletic or a Republican. By mentioning Mark, do you think I am trying to convince you to become a rugby playing Republican? I am not. I am challenging you to tell us more about your little box.

When you say you are a person with epilepsy, please tell me, "I am a person with epilepsy who...."

So, who are you?

If You Fall Seven Times

2011-09-29T20:00:00.000Z

... stand up eight.

Today is the anniversary of my first seizure. Twenty-seven years ago, I fell during a high school debate tournament. I hit my head on a desk before crashing into the floor. Eventually, I got up. I think. Because I was disoriented, I did not realize that people have been helping me all this time. I was never alone. I have never stood up by myself.

In the years following, I fell often. Sometimes I fell after having the "big bad" seizures. Sometimes I fell after having small jerky movements that came while running. I do not even know if I would say I always stood up after some seizures. I learned how to bounce off the asphalt into running position with bloody knees and arms. I pretend that I do not like to jog now. Mostly, I do not like having my body picked up and thrown onto the ground.

Many of you have heard the Japanese Proverb about falling seven times and wondered how it applied to those of us with epilepsy. If I fall seven times, why stand up eight? Let's not make this more complicated than necessary. If I fall seven times, I am only getting up seven times. But like the rest of us, I have fallen more than seven times.

On the twenty-fifth anniversary of my first seizure, I shared my evolving epilepsy experience. The day, which had long been a traumatic reminder, is now the beginning of a new year. I am just one person who has learned how to share their experiences. There are also a number of outlets around the world for people to express themselves. We have a community.

The Epilepsy Foundation provides this forum and other publications so that we can read about people such as Denise Pease and others who have succeeded in the African American community.

We can find our voice in blogs and the comment section. It was in a comment to my last blog post that Jamie Weiss posted one of the best criticisms against the latest movie Trailer Heist when she wrote, "Spastic, weird, funny looking, crazy, scary, ugly, mean, stupid…that’s the implicit message children with epilepsy hear when seizures are used as comedy. They believe the world is laughing at them."

Young adults have also created their own blogs. Mandy Krzywonski has collected "first seizure stories and epilepsy authors. Mandy is just 18 and I can hear her shouting from San Antonio. When I was 18, my silence was horrifying.

Jessica Keenan Smith is a star. She has recently began advocating about having epilepsy with the same tools she developed to market and promote other causes. Jessica has an epilepsy blogger directory that she updates often. Some of the bloggers you may recognize, such as Mandy, or Alysse Mengason. Other blogs are from Mexico, such as "epilepsia: La Vida De Un epilepico Dia A Dia." If you notice a blog that should be on the list, contact Jessica. Follow her on Twitter and Facebook too.

If you do not know Twitter, Facebook or Google+, you are probably not from the UK. Somehow, even though many social media companies are located within 50 miles of my Bay Area home, people from other countries seem to utilize social media more for epilepsy advocacy. One great example is Epilepsy Action in the UK. Check out the Epilepsy Action Forum, and if nothing else, follow them on Twitter.

The International Bureau for Epilepsy provides a list of epilepsy and health organizations throughout the world. This list is another reminder that when we fall, we do not fall alone.

Those of us who are lucky, fall and get back up. Some of us leave behind friends who continue telling our story. The Anita Kaufmann Foundation uses cupcakes. Purple Cupcakes. The Anita Kaufmann Foundation supports Purple Day every March 26th for all of us. Cassidy Megan, a little girl with epilepsy, started Purple Day in 2008. Cassidy believed that our community could make this happen. She probably believes that we can support each other too. Now that I know the origin of Purple Day, I will not let her down.

The epilepsy community finds other ways to connect. Nathan Jones produced a short film, "A Seizure." Susan Noble maintains an active site with more than one thousand Facebook friends. Actor Greg Grunberg created a non-profit where people can Talk About it by posting videos, photos and blogs. At the Talk About It site, I especially like reading Alastair Millen's posts.

There are so many websites and publications that our community can feel disconnected and discouraged. The tools are not perfect either. Yet, we still find ways to tell our story. When I was younger, I chose silence hoping that I would not trip and reveal my secret. As I get older, I treasure the inevitable missteps and rough days. I know that I will recover, because I always get better. I might fall, but I always get up. Up. Down. Up. Down. Up. Down.

Who helps you when you fall?

If You Want to Make God Laugh

2011-09-09T14:30:00.000Z

... tell him your plans

Comedian and actor Woody Allen is credited with the quote, "If you want to make God laugh, tell him your plans." Allen probably created the joke after hearing the popular Yiddish proverb

Man Plans

God Laughs

I remembered the Woody Allen version during the recent planned Seizure Boy boycott controversy. Eddie Murphy and Ben Stiller star in a movie Tower Heist. In the movie's trailer, Eddie Murphy's character calls Ben Stiller's character a seizure boy. After the trailer was released, actor Greg Grunberg tweeted to his 1.4 million followers, "TERRIBLY OFFENSIVE TRAILER for #TowerHeist - Making fun @ people w/ seizures is NOT FUNNY & WRONG! "Seizure Boy!" REALLY? #Boycott RT."

After Brett Ratner allegedly apologized for the trailer and asked that the studio change the marketing, Grunberg called off his boycott via Twitter, "greggrunberg THANKS @BrettRatner for ur SINCERE APOLOGY to the Epilepsy Community! I'm lifting my personal boycott of ur hilarious film #TowerHeist RT."

Did someone hack Grunberg's twitter account?

Grunberg is a sincere advocate. Grunberg shows up to events and supports his son who has epilepsy. Grunberg has encouraged people around the world to "talk about it," which is why the recent tweets from his Twitter account seemed out of character. It appeared that Grunberg (or someone who was using his account) was trying to make God smile.

Act 1. Tweet about #Boycott

Act 2. Retract #Boycott

Act 3. Wait for God to laugh

Since I am not an expert on comedy or God, I am probably wrong, but I have been trying to follow Grunberg's leadership, and I do not know if I can take him seriously.

Was Greg Grunberg joking when he called for a boycott?

Who boycotts Eddie Murphy movies in 2011? This must be a joke, right? If this were the 1980's I would understand. In the 1980's Murphy was popular and offensive. I probably should have boycotted Murphy in the 1980's too, but I enjoyed his stand up routines, even with his homophobic jokes, ("I have nightmares about gay people," Delirious, 1983) and disinformation about the spread of AIDS (RAW, 1987). But that was the 1980's. In the age of Diastat, nobody makes any "anal-probing" jokes.

Was Grunberg joking when he reversed the boycott?

Before I had time to become offended by the trailer, Grunberg removed his boycott after Ratner almost apologized. Nothing has really changed. The seizure boy trailer is still on the Tower Heist website. Universal has not agreed to change anything about the movie or the trailer.

However, one thing has changed since the boycott. Eddie Murphy has been chosen to host the Academy Awards. With boycotts like these, who needs heroes?

Who produces this year's Academy Awards? There are two producers and one is Bret Ratner. Ratner chose Murphy. A boycot would have inconvenienced the Academy, Ratner and Murphy. According to the L. A. Times, Ratner was quoted as saying that Murphy's being the host was "beshert" which is a Yiddish word for "meant to be." Ratner could have said,

"Man Plans

God Laughs"

I sympathize with Grunberg. Talking About epilepsy is not easy, especially when an entire industry might find his complaints annoying. Boycotting Norbit (that was a forgettable Eddie Murphy movie) is easy. What would happen to Grunberg's career if he disrupted the Academy Awards? He might not be able to work again in the industry.

So if Grunberg wants to retract his boycott, I understand too well. Every time I post a blog, I measure how I will inevitably offend people and how my words will affect my future. I just hope Grunberg understands that there is a difference between a real boycott and a boycott where someone Talked About It.

If a Picture Is Worth a Thousand Words

2011-08-10T21:00:00.000Z

...how many words are lost when others create our pictures?

I ask how our images are created both as a photographer and as a person with epilepsy; I ask this question now, because the International Bureau for Epilepsy is concluding a photo competition titled "Epilepsy Without Words." More than 300 photos were submitted; the judges will announce the final 50 at the end of August. I did not participate as a photographer nor as a judge.

The contestants appear to have a range of experience with epilepsy; some photographers probably learned about the contest on an internet contest clearinghouse. Regardless of the photographers' personal experience, the contest provided an opportunity for image makers to capture "the feeling of epilepsy," something I try to do with my own work. I will be interested to see how the judges from IBE select the "50 best photos."

As I have been preparing this post, the Epilepsy Foundation published the current issue of Epilepsy USA. My photos from the 2011 National Walk for Epilepsy appear on page 8 in this issue. Several are from the slideshow below.

If a Picture is Worth - Images by bryan farley

Being a photographer and a being a person with epilepsy has similarities. Photographers often must yell to have their pictures seen, especially with the "Flickrization" of photography where graphic designers often search for free photos online. Furthermore, with digital photography, many people believe that they are photographers in the same way that I believe that I am a writer. With so many images, we risk becoming visually illiterate.

Must a person have epilepsy to capture "the feeling of epilepsy?" In the same Epilepsy USA issue, Amir West captured photos of his third walk in four years. While I focused on different feelings, Amir found triumph and joy that I missed. I also want to acknowledge how Amir consistently documents his "feelings of epilepsy" throughout the years. See 2009 and 2008 for examples.

If anyone wishes to read more about the "picture is worth" quote, this post might interest you. The first time it appeared, a picture was worth 10,000 words. Before long, a picture might be worth 144 characters.

If all you have is a CURE, people with epilepsy become...

2011-07-14T19:00:00.000Z

There is a quote by Bernard Baruch that I have been contemplating lately.

"If all you have is a hammer, everything looks like a nail."

I have been thinking about the quote for several reasons. For one, I often feel as if I do not have enough tools to express myself effectively. Decades of shame have taught me how to be silent and how to be outraged, but not how to express my frustration with caring people. I want to learn how to use a velvet monkey wrench.

The quote also illustrates how some health organizations approach epilepsy advocacy. It seems that some people only have one blunt tool; epilepsy must be CURED. Many of these advocates do not have epilepsy, yet they hammer away for a CURE. Whenever they finish hammering, I am often left feeling a little more bent and rusty than when they started.

If all you have is THE CURE, people with epilepsy become the nail.

I do not want to be CURED. There was a time when I wanted nothing else, but not now. Do I want better health care, research and medication? Of course, but I do not need a CURE. If people with epilepsy wanted a cure, I would support them. If those of us with epilepsy wanted to improve the lives of families affected by epilepsy, I would hope that those with institutional power would support us. We must lead the fight for a CURE if there is to be one. When others lead it, we appear weak. We appear too weak to ask for a cure.

Though I want parents to feel supported and heard, I do not want them leading or "spearheading" our movement. I don't want a group of people without epilepsy defining the goals of my community, nor do I want them being identified as the spokespeople for our community. Often people with epilepsy are described as quiet when in truth, people without epilepsy are just too loud. I also do not want a quasi-partisan political organization leading our advocacy efforts; it becomes awkward for everyone.

I want journalists to start acting like journalists. I am a journalism educator, so my warning comes with some sadness. People with epilepsy have been used. When epilepsy advocates do not always have access to the White House, journalists will stop using people with epilepsy to gain access to political and business leaders. While I have appreciated the recent publicity, people with epilepsy should be cautious. Journalists have promoted the cure mythology at the cost of challenging political and business leaders about their treatment of people with epilepsy.

Those of us with epilepsy must keep building. I realize it is much easier to destroy something than to build it, so I respect those people who have created organizations. People with epilepsy need support. Families need help. Of course, it is even more difficult to build bridges than it is to build isolated structures or bridges to nowhere. We must find a way to include the families, journalists, politicians, religious leaders, and business leaders. If you know someone with a velvet monkey wrench, please let me know.

If I Die Young

2011-06-13T01:30:00.000Z

About 20 years ago, I met a very old woman who was very much alive. There was none of the "age is just a number" nonsense. She knew she was old and she treasured every extra day that she lived. At the time, I seemed to be her spiritual opposite. Unfortunately, I believed I was old. Whereas she was grateful, I was preoccupied with "not dying."

After we talked for several minutes, she asked me, "You know how to avoid growing old?" I wanted to know her secret. She was not wealthy and because of her age, she must have known hardship. (She had lived during The Great Depression and WWII.) Many of her friends and family members had already died, so she could have easily felt sorry for herself. But she did not.

So I replied, "No, how do you avoid growing old?"

She smiled, "Die young."

This must be a common old person joke, and as I become an older person, I enjoy the joke more. I appreciate the simple hidden truths, especially for someone with epilepsy.

First, everyone dies. Regardless of religious, geographic, political, age or other differences, humans share death. We all die. While death is often traumatic, it is also universal.

Secondly, everyone dies once. Just once. When those of us with epilepsy read statistics about higher mortality rates for people with epilepsy, we might believe we that we die more often than other people. We are not more likely to die than other people. We die once, just like everyone else.

Third, not everyone grows old; some people die young. People with epilepsy probably die younger than other people, but we are not the only folks who die suddenly or young. Having epilepsy also does not inoculate us from losing a child, spouse, friend or parent to some other illness or accident. My father died suddenly.

If I Die Young - Images by bryan farley

I almost died several times after my first seizure, and I remained quiet about having epilepsy for many years, in part, because I did not want my mother or friends to worry about me. Until recently, I did not know the statistics about how much more likely I was to die suddenly than my friends, but I knew my life was more fragile after my first seizure. My mother knew too.

The last couple years, I have photographed support group for women whose children have died. I care about these families deeply. I am also reminded that many of us with epilepsy do not grow old; instead we leave behind grieving parents.

I am a parent of two little kids and their safety is my first priority. If either child were diagnosed with epilepsy, I would want them to feel comfortable to "talk about it," but I wonder if my primary desire to keep them safe might unintentionally influence them to remain silent.

If The World Ends Tomorrow

2011-05-30T16:30:00.000Z

I miss these people.

Because Family Radio became a national punch line, many people will assume that I miss all the bad rapture jokes and references to old REM songs, but I miss the deeply human discussion. I miss the conversation about death, uncertainty, and marginalization. I do not miss the tone, but I miss the underlying questions.

Judgment Day - Images by bryan farley

I took this photo at the 2011 National Walk for Epilepsy. When I look into this woman's eye's now, I wish I had learned more about her. Instead, I waited for the Cardinal bus to appear in the frame so that I could add another layer of religious symbolism. By becoming obsessed with the image, I broke a golden rule of photography: Stop Taking Pictures; Start Making Relationships. My photo suffered and I lost an opportunity to connect with a person.

Now that I am living openly as a person with epilepsy, I demand more from myself than I did the first 25 years. I search for common ground; I seek to understand. I often fall short, and when I do, I ask myself, "If this person were suddenly diagnosed with epilepsy, how would I support them?" Today when I look at the photo of the woman, I look past the sign and see the words on the van, "God be merciful to me a sinner." My higher standards reveal my own human weaknesses.

If I had spoken to the woman, I may have learned that my assumptions about Family Radio being a small D.C. Metro organization were incorrect. Not only did the organization reach people across the world, but the headquarters were based in Oakland, California, MY HOMETOWN! When I took the photo of the woman, our family car was parked about a half-mile from the Family Radio headquarters 3,000 miles away. I assumed that these people were so different from me, I never considered that anyone from Oakland would join Family Radio. Instead, Oakland's Harold Camping started Family Radio. I am constantly surprised how often I am wrong.

On the evening that Camping predicted the rapture, I visited the Family Radio headquarters. I did not see anyone from the organization, but I met several protesters. I met Atheists, Fundamentalists, journalists, and activists. Some people yelled at each other. Three people apparently staged a fight with fake blood. As far as I could tell, the staged fight was intended to make the Family Radio crowd look bad. Talk about piling on. I mean, for years the organization had been predicting the end of the world. Family Radio obviously got it wrong. Did someone think that staging a fake fight would make Family Radio look worse?

Family-Radio-HQ-Rapture-Protest - Images by bryan farley

As a person with epilepsy, I understand the discomfort of living with uncertainty. I know how it feels to be mocked and marginalized. I also know how it feels to have people assume that I have recovered when I have only begun hurting. Where is the national concern for the Family Radio followers? Does anyone care what happened after they lost their certainty? What has happened to their families, especially those who were separated?

Before I sound too self-righteous, please remember that I am human. I have mocked others, and I assume that I mock people much more often than I realize. I might justify my comments by believing I am being clever, sarcastic or "just joking." Regardless, people who are being mocked or bullied hear these comments. They probably do not consider them quite so clever.

While bad jokes are not profound, they can reveal a basic humanity whether spoken by believers, atheists, activists, clowns or journalists. As people with epilepsy, how do we create a movement where we can support everyone, including those who mock us? Is this asking too much?

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If I Only Had A

2011-05-18T00:30:00.000Z

L. Frank Baum's The Wizard of Oz was published 111 years ago today. Baum wrote fourteen Oz books; several other authors continued the series, and in 1939, Warner Brothers adapted the book for the big screen. More than seventy years after the movie's release, Americans still identify with many of the popular themes. Americans search for home and seek help from strangers. We question our courage and wisdom. Wicked witches and wizards are never to be trusted.

The first time I saw the Wizard of Oz, the flying monkeys scared me; they still scare me. The Wicked Witch terrified me. I was relieved when she died, but I worried that she might return. Once horrified, I would never feel completely safe again. Perhaps I feel safer after seeing the musical Wicked where the ending was rewritten and we learned that the witch was not wicked.

I ran from epilepsy until I had my own children. I needed to rewrite my epilepsy story so that my children could make friends with flying monkeys, wicked witches and scarecrows.

If I Only Had A Scarecrow - Images by bryan farley

My children walk with me at epilepsy events. Last week, while I was wearing my purple National Epilepsy Walk T-Shirt, my daughter was wearing her white shirt. She asked sadly, "When do I get to wear a purple shirt?" Even though she knows that purple shirts are for those with epilepsy, she still wants one. Perhaps she only wanted a shirt of a different color, but she seemed to be communicating something more significant.

Before I became a parent with epilepsy, I did not recognize my courage. I would do anything for my children, and I know that if my children ever developed epilepsy, I would continue fighting for them. However, I wonder if I would recognize their courage. Would I become overprotective and worry about flying monkeys and wicked witches? How would I evaluate their intelligence? Would I think to myself, "Wow, he or she is a smart kid. Imagine how smart she would be if only she did not have epilepsy?" Would my children detect that I did not accept them as much as I should?

When I begin to doubt my abilities to adapt to future situations, I think about a song from another Wizard of Oz adaptation. The song Home (the Stephanie Mills version) from the musical The Wiz. A few lyrics follow:

And oh, if you're listening, God, please don't make it hard
To know if we should believe the things that we see
Tell us should we try and stay or should we run away
Or will it be better just to let things, let them be?

I imagine if my children became ill, I would wonder if God listened to my prayers. When I wanted to complain, I would wonder if my friends or community members listened to my pleas. I imagine I would search for answers in far away places. My courage and wisdom would be tested.

But until it happens, I can only pretend to know what I would do. Until then, I can only scream from behind a curtain.

If it were easy

2011-05-13T16:30:00.000Z

This is my first post as a featured Epilepsy Foundation eCommunity blogger. I am honored to add my voice, but I am also nervous. What if I write and nobody listens? What if I offend those who want to help? What if I do not use my power responsibly? What if I allow my fear to keep me quiet? What if someone thinks I am a whiner.

So many reasons to remain quiet.

The unasked questions frustrate me more, and I might as well ask them in this column. Someone from our community must ask the questions... and when I write "our community" I mean people with epilepsy. I love my family and friends, and I appreciate them, but I do not want them to speak for me, especially when I disagree with them. Sometimes we must even challenge our parents, even if we question them with our childhood voices.

easy questions - difficult answers - Images by bryan farley

I believe in the power of imagery and words, otherwise I would not have begun this new journey. I also support those who remain silent. Sometimes we continue the myth that if we just "talk about it," we will find a CURE. If only it were that simple.

Yet, speaking is important, otherwise I would not be writing. There are many layers to silence. Now that I am comfortable admitting that I have epilepsy, I found a new problem when publishing this first post. Because many of our community chooses to remain silent or they are unable to speak, my words may have more influence than I deserve. While I welcome the responsibility, I hope the readers remember that our community is diverse. Those with epilepsy may experience discrimination, but epilepsy does not discriminate. Anyone in America could have it now... anyone in America could suddenly join our group.

Please join the discussion at the point where you feel comfortable.

National Walk for Epilepsy 2011

2011-04-04T16:00:00.000Z

This was my second D. C. walk. My wife and two little kids came this year.

If you wish to look at my photos, you may check out the gallery below. Click the link below the gallery.

http://bryanfarley.photoshelter.com/gallery/5th-Annual-National-Walk-for-Epilepsy/G00007bvQz6LdvcQ

5th Annual National Walk for Epilepsy - Images by bryan farley

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In my own words

2010-06-26T05:17:59.000Z

I am fortunate to have something printed in the current issue of Epilepsy USA. There is a recurring feature called, In My Own Words.

This time, the words are my own. If you are interested, you can read more about it at my other blog. Or go to the Epilepsy Foundation site.

http://www.morethankids.com/2010/06/epilepsy-usa-those-are-my-words.html

I spent about six months writing and re-writing the article. I took twenty five years before I was able to start writing.

I have appreciated all the support recently and throughout the last twenty-some years. I hope I can give back. Let me know if you have any suggestions.

Chad Barth Event Finalist Voting

2010-05-25T03:51:50.000Z

So, last week I mentioned that the Chad Barth Concert for Epilepsy was a finalist for the Eventbrite event of the year. Now people can vote. I am sure that the other events are pretty cool too. Of course, I am biased. And, to be completely transparent, I photographed the event too, so I am even more biased.

But I photographed the event, because I have epilepsy, and I traveled to D.C. from California to see what it would look like if people supported someone like me.

Now, I would like to see how people like me support those who support people like me.

http://blog.eventbrite.com/myeventrocked-finalist-concert-for-epilepsy

Here is our chance. Go, vote. Read about the event. Part of raising awareness is showing our community that people support us, and when they do, we will recognize them.

bryan farley

Chad Barth's Concert Eventbrite Finalist

2010-05-20T22:16:40.000Z

The Chad Barth Concert for Epilepsy qualified as one of the five finalists for event of the year. Chad's event has raised nearly 80,000 dollars during the first four years. Each year the event has raised more money than the previous year.

Read Chad's comments at the link. http://blog.eventbrite.com/myeventrocked-finalist-concert-for-epilepsy

You might be able to vote for the event at some point. Not really sure how that works, but I am more impressed with Chad and the event.

Thanks Chad.

bryan farley

Another Trailer Choir Concert

2010-05-18T04:59:31.000Z

Some of you may have been able to see Trailer Choir at the Chad Barth Concert for Epilepsy during the National Walk for Epilepsy weekend.

I was fortunate to photograph the concert while visiting from California. The band invited me to see them when they were in California.

Trailer Choir has been supportive of our community. If there is anything we can do for them, please do it.

Below is a link to a post on my other blog.

http://www.morethankids.com/2010/05/trailer-choir-in-salinas-valley.html

Bryan Farley