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. While my children have learned that epilepsy is a life threatening medical condition, my children have also learned that epilepsy is an amusement park (and a concert… and an opportunity to serve others.) My son smiled when he told me how much he enjoyed seeing me happy on my birthday.
Third: The challenge – translating for others
In 2010, I discovered how to explain epilepsy to those who have never had a seizure. I created invisible aliens who shoot electric ray guns. The aliens only shoot us. We can’t see the aliens, but we begin sensing when they approach. Sometimes we can feel them… maybe smell them. Their auras smell like invisible aliens who wear almond extract and shoot electric invisible rays.
Invisible Electric Alternating Current Aliens
Forth – Being Cavalier
Want to know something funny? I don’t know how to measure my effectiveness. For the last three years, it seems that the only person who has read my blog is Brad Paisley and my mother. (I am not making up the Brad Paisley comment; not so sure about my mom.) On the old Epilepsy Foundation site where I was the only featured blogger with epilepsy, the page views declined.
I wonder if Eric Snowden and his mother read my blog. If Snowden never read my blog, nobody reads my blog… not even the NSA. If I can’t attract an idealist whistleblowing computer geek who has epilepsy, I should just post photos with silly captions.
Fifth: Always Grateful
So, I might not be always grateful, but I get there eventually. If I fall down, I hurt, but I find a way to be grateful for the lesson. Sometimes it takes a long time.
I am grateful to the superheroes who support their friends and family. You inspire me. I am grateful to people who encourage me to keep shooting these types of events, especially in the beginning when I didn’t feel comfortable.
If you want to learn more about my first 30 years with epilepsy and how I became grateful, you can read my old blog posts here. It took a while.
Sixth – More Family
I often join team and photos. (I joined the Moore Family above). The greater epilepsy family is one of my many families. I have been fortunate to comment about our growing family the last few years. I hope that I can continue to do so. My posts will continue to be added here for now.
I can also continue collecting photographs that are epilepsy related. Here is my collection of the last six years.
This simple photo is one of my favorite epilepsy photos. I took it before we entered the staff entrance Saturday morning. My daughter is smiling and holding my tea mug that one of my photo students gave me this year. My son is wearing a green Mission San Jose Warriors beanie. Mason is also sticking “rabbit ears” over my head. The rabbit ears remind me of the photos I took at my first national walk for epilepsy. I was so nervous, I did not know how to be a person with epilepsy and a photographer. All the people looked like they had something sticking out of their head… aliens.