The Pivotal Moment I Realized My Purpose for Having Epilepsy
Last updated: July 2023
I'd experienced all of epilepsy's weapons for nearly 40 years – lost jobs, car wrecks, humiliating pharmaceutical side effects, broken romances. But in 2002, I was engrossed in a "reconstruction period." More frequently, I was seeing my cup as being half full rather than as being half empty.
My career was going well
I worked in a TV newsroom, and no one freaked out when I started smacking my lips, studying my left hand in the manner of a chimpanzee, and sitting myself down and sleeping 5-10 minutes. Nevertheless, I questioned, "Why me?"
When producing a news story about international studies at Southern Illinois University, the dean took to me, offering me an opportunity to teach English to students at SIU's "sister university" in China.
An administrator from that university was visiting SIU named Lucas. We instantly bonded, and he enthusiastically pledged he'd be my "Chinese older brother." From the start, I was open about my epilepsy with SIU, Lucas, and that university's coordinator for "foreign experts" named Jackie.
Having a seizure while teaching abroad
My students and I had fun. All my students were teachers who were working on graduate and post-graduate degrees. One afternoon, laughter ceased when I stopped talking and commenced smacking my lips. After feeling for the wall behind me, I lowered myself to the floor. They were dumbfounded why I folded my arms across my knees and fell asleep on them.
When I woke 5 minutes later, all were present except the one person who had rushed to get a nurse. I shook it off and smiled. Typical of my postictal phase, I spoke coherently without being aware of what I was saying. People were stunned that I'd quit a good job to work in a country that's language I couldn't speak – especially with my "sickness."
Keeping my seizures in perspective
I chuckled. "Five times God saved me in car wrecks that I walked away from after seizures. I could be killed by simply falling off a ladder in my home as I could be walking across the street in front of your school. So why not come?" But mentioning "God" to anyone was grounds for my termination.
The nurse was out of breath when she entered and Jackie followed.
Jackie announced that class was dismissed without asking me anything, even though I’d come around and was explaining my "Dian Xian": the Mandarin language's translation is "crazy [person with] seizures." No one in the class admitted having it, but eventually some told me about knowing people with it.
The perception of epilepsy in China
Those educator-students came from around China, even rural areas. They told me that because Chinese people expect their children to eventually be their providers, the government closed its eyes on parents of infants with epilepsy who let their child die.
If seizures start later in life, parents could sell them to a "trafficker," my students told me. He'd take the children into cities, beat them until they were too crippled to walk away, shredded their clothes, and gave them bowls to beg for money kept by him. He would set them in front of majestic office buildings, and if the trafficker was dissatisfied with their yields, he would beat or cut them to make their appearance more ghastly.
If seizures began in their teens, they were pulled from school and made to sweep the streets or collect garbage forever. This is what my students told me about how epilepsy was treated in their country.
Using my seizures as a "teaching moment"
I took it upon myself to tell my other 6 sections of students about my seizures and what to do if it happened again. None of my nearly 700 students ever witnessed an adult having a seizure. Everyone was awed that someone with "Dian Xian" could accomplish the things I'd done.
Several days later, Jackie told me that the dean and a political party liaison named Li expected me in Li's office that afternoon. When I arrived, neither man rose to give me a polite greeting. As a matter of fact, Li's expression was frightened, he was clutching his chair's armrest so tight that his knuckles were white. It was my impression he thought he was being exposed to anthrax!
Losing my job because of skewed perceptions
"Mr. Ulmer, you are released from your position and you must leave today,” he said.
For the first time ever, my reaction to an employer’s ignorance made me angry enough to be speechless. It took a few moments until I calmly asked why.
This time the dean answered, "We don't want you around our students."
Myths and fears about seizures
"We are doing this to avoid a political incident," Li replied. I demanded that he explain that. "Even if your disease is not contagious, we cannot risk having you get injured and bloodying yourself in a seizure, and then going to a news source or your consulate and say that we tortured you."
I was angrier than ever before. "You think the U.S. would send an aircraft carrier to China because 1 American has an epileptic seizure? You're crazy! Millions of people have seizures everyday without anyone going to war!"
"You must leave." Regardless how firm Li’s instructions were, his behavior still seemed to be frightened.
Finding purpose through hardship
I bumped into my brother Lucas on my way out of the building. Somehow, he saved my job for the remaining 9 weeks of the semester. I told my students that I was terminated, but not how stupidly this was being handled. However, they respected me for sharing my secret.
Most importantly, many of them wanted to learn about my God who made me so confident. Talking in public about religion was outlawed, so they invited me for private coffees or lunches to tell them about Christianity as best as I could.
I lived in 5 cities for a total of 2 years. A year later, I would have an equally primitive and hostile experience in a prestigious law school.
However, I was jubilant at realizing that my purpose for being epileptic was being the Biblical farmer who tossed out the grains that were the Word of God in that country!
Since being diagnosed with epilepsy, has your memory been impacted?