Make Epilepsy Great Again
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? We were tragic, but powerful. Mythic.
When I talk about epilepsy, I feel like an insane epileptic. I feel like Taylor Swift in that Gatsby filled Delicate video where she walks through crowded rooms unable to be seen and heard.
I didn’t always feel this invisible. For several years, I was a featured blogger for the Epilepsy Foundation eCommunity site. I was the only featured blogger with epilepsy; I shared something important with people who didn’t have many places to go. When the Epilepsy Foundation migrated to a new site, they left me behind. I felt as though I had walked into the old movie Gaslight. They presented me with fake jewels and lit a “fire in my brain.” Did the foundation intentionally gaslight me? I don’t know if they cared enough.
At least this year’s speakers were fashion forward. The Epilepsy Foundation of Northern California invited US Olympic Hockey goalie Chanda Gunn and filmmaker Miles Levin to speak at this year’s gala. Both speakers have epilepsy. I have known Chanda and Miles for several years, and I was grateful to see them have an opportunity to share their experience and success. I photographed Chanda in 2013 in Washington, D.C.
I have been writing about epilepsy and heroes for more than ten years, and as I reflected on old posts, I realized that I have been discussing these themes since I first started writing publicly about epilepsy.
In November 2015, I wrote that “Talking about epilepsy is like living in Oz.” In my first blog post as a featured blogger for the Epilepsy Foundation on May 13, 2011, I wrote, “What if I write and nobody listens? What if I offend those who want to help?”
More than ten years ago, I wrote how Cameron Hallopeter deserved to be considered one of our heroes too, along with Wesley Autrey. Cameron and Wesley spent time under a New York subway train together. One of the men had epilepsy; the other was considered a hero.
I called my blog, “If I Talk About It, Will You Listen?” The posts and videos operated more like an online discussion board. It ran for over three years. I met many wonderful people through that site, and I felt fortunate to provide a service that I didn’t find offered anywhere else. When the new epilepsy site was created, many of us were left behind. Even I was left behind… and I was known by the foundation. I wasn’t invisible. I attended seven consecutive National Walks. In addition to writing for the site, I photographed events. I felt bad for me, but I also felt bad for the people who counted on me to be their voice.
I was never asked to write for the new site. Did they ask other people with epilepsy to write columns and moderate discussions? I don’t know. Did the people without epilepsy assume that there weren’t people with epilepsy communicating with each other? Did they realize that it mattered whether we had a voice? As far as I know, nobody asked me about moving my column over to the new site. It seemed like they just wanted to turn down the gaslights and have slowly disappear.
If our epilepsy institutions don’t listen to us, can we really expect the larger community to value us? Can we expect our bosses and friends to value us? Can we expect our spouses, our family, and our church to see the sacred in each of us… or will they only see the tragic?
What happens to people who are not valued by their community? Can someone be devalued by their community and still be valued by their family, spouse, employer, church, school….
After listening to Chanda speak about her Olympic blog, I contacted the foundation and asked about my column. According to the foundation’s contact person, much of the old site was transferred unless the information was misleading. However, according to the contact person, the four featured blogs were not moved, because of technology issues. The Epilepsy Foundation literally works with people who perform brain surgery, so I think we could have solved a technology issue if we wanted, but it’s too late now.
This was basically a people issue. I felt discarded. I became disconnected. I stopped trusting the foundation and myself. Once I lost trust in myself, I didn’t know what to believe about the foundation. Was it possible they listened? Were they still listening? Had they ever listened? Had I wasted my time?
Even though I have disconnected, I still show up to the local events, but I don’t dance. I don’t fully participate, but I go, because it matters, and maybe one day these photos will matter again. (photo slideshow)
In that May 2011 Epilepsy Foundation post, I added, “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.”
Living with epilepsy is not simple; it is both heroic and tragic… and sometimes mundane. It’s very much like the last line in Great Gatsby.
So we beat on, boats against the current, borne back ceaselessly into the past.
For further reading, see notes on a blog.