The next installment of "Notes on a blog." This post is to my article titled Make Epilepsy Great Again.
For Father's Day this year, my daughter gave me the book, From Heartbreak to Wholeness "The Hero's Journey to Joy" by Kristine Carlson. I keep the book near my bed so that I can read a few pages before going to sleep. Even when I don't read the book, I feel better looking at the cover and reading the title. It is hopeful, especially compared to the Fitzgerald quote ("show me a hero and I'll write you a tragedy").
Epilepsy is not the only part of my life where I have experienced tragedy and heartbreak. Epilepsy just feels more conflicted... full of mixed messages. More recently, I have seen the term "End Epilepsy" gain popularity. I have no interest in this campaign, and I don't think that pharmaceutical companies want it either. If Big Pharma could end epilepsy, would they? Do medical professionals want to end epilepsy? The slogan sounds inspiring, but I wonder if it is slightly self-deceptive... perhaps Big Pharma started it as a distraction. Perhaps Upton Sinclair explained this conflict better when he said, "It is difficult to get a man to understand something, when his salary depends on him not understanding it." Sinclair died 50 years ago on 11/25/68.
I mentioned Taylor Swift and The Great Gatsby a couple time early. I just looked for the link about Taylor's fascination with Gatsby. I found this November 2017 Slate article. It's really thorough, although the writer uses a cheesy convention on the last line.
I mentioned a few historical concepts, because I wanted to remind readers that it is easy to overlook the past. On one hand, epilepsy has been called the sacred disease. On the other hand, people with epilepsy have been killed, because they were thought to have been possessed by demons. The title Make Epilepsy Great Again was my first attempt to play with our desire to forget the problems of the past. Hercules was said to have epilepsy. Though Hercules was the original hero, he was also troubled.
There is a television series called Show Me a Hero . It is about the American education system. It takes its name from the same quote I started my post.
One of our Presidents helped start an epilepsy colony. His wife had epilepsy. You can read a little about the Epilepsy Colony Thing. If you prefer listening, Molly McCully Brown spoke to NPR's Terry Gross about a colony for "epileptics and feebleminded." The colonies were created for our benefit, although I don't think people with epilepsy invented colonies.
For a longer view of the history of England, visit the Society of Epilepsy.
The invention of the EEG is not straightforward. One article mentions the "discovery" and another mentions the year Hans Berger "invented" it. One year is 1925 and the other is 1929. Either way, the EEG was not widely used during the Roaring 20's. Medication was not widely available throughout the world; where available, choices were limited.
Hitler's extermination of people with epilepsy was part of a larger effort to kill people deemed unworthy. Sterilization was also part of Hitler's Germany, though not limited to Germany. More sources.
I have mentioned Cameron Hollopeter several times in various places. If you are unfamiliar with the story, you can find background here.https://www.cbsnews.com/news/bystander-pulls-off-daring-subway-rescue/
I have known Miles from the local chapter. I met Chanda in Washington, D.C. or San Francisco. I have photographed her in both places around 2012. I have photographed Miles nearly every year since before that.
I referenced an older post about living in Oz. I almost included the following on the other post. I found this one from 2015. It has a similar message to the current post. I wrote, " There is something unreal and dreamlike. Those of us with epilepsy are expected to remain invisible AND encouraged to “talk about it.”
If I had been more present, I would have photographed the event differently. I probably would have planned to take photographs that emulated the period. The best example would have likely been Edward Steichen.
NOTE: This post was last updated on 11/29, as was the post on Bryan Farley photography dot com
