This is part 3 of my epilepsy story,
The road to recovery became a thing of dread as my parents drug me back to Pennsylvania kicking and screaming. I hadn't wanted to return ever again, but life has a dark sense of humor. Back in my small town in rural Pennsylvania, bored out of my mind, I recovered. I did get the lecture I was dreading, daily. The constant fight around my future job status and living arrangements, mostly about moving back to the east coast became the norm. What was once a life of independence and freedom, became a suffocating cage with my keepers helicoptering around me warily.
I understood their wariness. My epilepsy had gotten worse- my meds had failed. Was I going to be one of those thousands of epilepsy patients who was dependent on others now? Would I be able to live alone? Drive? What about work? Would my memory come back? Would it ever get better?
At the time, I worked in restaurants, around knives, friers, and gas stoves. It's not a safe space for someone who might, out of nowhere fall to the ground with a seizure. Would I have to go back to school? Live off the government for awhile? The questions were endless and it seemed like everyone around me wanted immediate answers.
The only way to organize my mind, was writing. I transferred my sadness and fear of the future onto the page- the feeling of being trapped by my family, my town, and within my own body. The suffocating cage that surrounded me during those months of recovery fed my creativity and eventually stopped getting smaller. Within a couple of months, it started expanding.
I began making decisions for myself after weighing pros and cons. Going back to school wasn't ideal, but for me, it was necessary. Switching coastlines, saying goodbye to friends- it was a rough transition. However, I eventually began to settle as the weeks and months progressed without a seizure.
Relearning how to walk took time, patience, and a lot of strength, but it was nowhere near as painful of a wait to regain the trust of my own body. That was the biggest hurdle of all. The only way to trust myself again, was to push myself outside my comfort zone. Did I understand my triggers? (things that could set off a seizure) Yes. Did I try to avoid them? Yes.
It took time, but trust came back. Part of that trust was educating myself on this hidden disease that I had spent years hating. I found support, not in a traditional support group, but rather a support group on Reddit. I was able to see, read, and relate to other stories around mine. Each persons' story with Epilepsy is different and yet, all of the feelings, bitterness, shame were the same.
In order to recover, I discovered that I had to take away the power of the shame it brought me and secondly, I felt the need to destigmatize it. So, I began to talk about it. At first, it was really difficult. At times, people stared with that loathsome look of pity that makes me want to roll my eyes. But after awhile, and a bit of added confidence, the shame of having this hidden disease ebbed away into obscurity.
This hidden disease is so important to talk about because 1 in 26 people will develop it in their lifetime with a third of that number being uncontrolled (medicine does not work to stop them). There are 65 million people in the world/3.4 million in the USA with this disease, and in many other countries and cultures, this is seen as witchcraft or possession. Out of all the cases of epilepsy, 6 out of 10 cases are unknown, though some are able to speculate and hypothesize, nothing can be proven just like it cannot be cured...yet.
For more information about epilepsy, visit:
Reddit epilepsy support: https://www.reddit.com/r/Epilepsy/