National Walk for Epilepsy – Purple Day
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.
The superheroes were created by Medikidz. Medikidz are a group of smart dedicated people. Medikidz comics teach children about difficult medical conditions. Most of the people enjoyed Medikidz and the Medikidz characters really seemed to enjoy the event. My photographs might show that characters are not always welcome at epilepsy events. At epilepsy walks, I feel less guarded. It is the one of the few days of the year that I do not need to wear a costume. There is a place for Medikidz at our events. If you look through the slideshow, you will see other people really enjoyed the characters.
This year my mother and step-father attended the national event with me. We live in California, so this might be the only time we attend the national event together. I think that this was my mother’s first trip to Washington, DC. I hope that we return together. I barely photographed us during the walk. The walk happened so fast.
Towards the end of the walk, I saw Coach Jerry Kill, Kirsten Wrye Krienes and Kristin Mulligan. (Mulligan was Glinda from last year’s post.) I saw angels who were willing to join the fight. I saw friends I have known online. At the Martin Luther King, jr Memorial, I photographed a group with “End Epilepsy” shirts standing between two large rocks. It was a present day “Catch 22.” Those of us with epilepsy now have 22 medications to fight epilepsy. (In 1993, we had four.) We are still caught between side effects and managing epilepsy. Some of us are doing quite well. Many people with epilepsy do not survive.
Now this is a shirt of a different color.
When I think of Sheryl Crow, I think of the song “Strong Enough.” The song haunts me. While I have been fortunate to have been loved, I have also been told that I was not strong enough. It was not the punches thrown in the air that hurt, but the ones that landed. Was I strong enough? Perhaps not, but I know that I did not get any Steve McQueen purple strong points for having epilepsy.
Nothing’s true when nothing’s right…but there was a lot right Saturday. I am still alive. I am still fighting. I am grateful that when I am finished, my name can be included on a remembrance flag.
[…] 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 […]