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. I just read a few of my posts from 2010, the first year I attended the national walk. In 2010, I was still nervous. I was learning how to become visible and useful.
In the last couple of trips to Washington, D.C. I was starting to feel invisible again. Before 2010, I was running away from having epilepsy. By last year, I felt that the larger epilepsy family was running away from me. I no longer felt useful.
However, I had collected enough images during the seven years that I could stop running.
I was excited that I could stay in Northern California and photograph a local event. My two kids wanted to attend. My son ran the 5K that started 30 minutes before the color run. After the race, my son joined my daughter and me for the color run.
The event was well organized. People connected with each other. The event felt like it was a family gathering, which is something that the epilepsy community needs. We need the feeling of family.
I hope that the run continues. We need to find more opportunities to connect… and remain connected. Local events have the advantage of being local. At the Epilepsy Foundation of Northern California events, I know people. People know me, or at least some people know my pictures. We have another layer of familiarity and trust. When Jodi contacted me, she mentioned seeing pictures from a San Diego event that I had photographed a few years ago. (The 18th Sharon’s Ride benefiting the Epilepsy Foundation for San Diego County was today.) That event felt like a family gathering too.
These events are still important to me. I am accepted at epilepsy events. While I have learned to accept myself, the outside world has not learned to accept me. While my children impress me with their ability to accept people, I need my family more now than ever. I need the connections. I need to be connected.
As with anything purple and epilepsy related, it’s worth mentioning that Prince’s Sign ‘O’ the Times was released 30 years ago last week. In the review, there is a line about Prince finding “inspiration in imperfection.” Is there any other way?
For more thoughts about the run, see notes on a blog post.