IN THE STIGMA WORLD OF SEIZURES

Caption courtesy of Frank Bryan

IN THE STIGMA WORLD OF SEIZURES

It has been a year since the e-face of my memoir "Seize the Seizures" popped up on Amazon. It is not a doctor's review of the disease; it is just my story -- a story of someone who got sick out of the blue from severe brain infection. The virus died, but it left me memories and a deep scar -- seizures and a lot more. Just like that -- today you are dancing the night away, tomorrow -- your brain is caught by a virus ready to do everything he is 'programmed' to do.

People do not like to read about diseases from non-doctors.  However, the parents of little children with 20 seizures a day have to share what their child and they face every day; the woman, who is divorced, has to find relief. Her children have to know why she does not see them often. She is not a bad mother; she is a sick mother suffering from a disease, which may be with her until her last day. 

If you are a celebrity, it may not be so bad to admit the disease you have. Everything can be used to get the attention on you. If you are a veteran, you have a chance to focus donations in the field of research for these diseases, which are not in the center of medical research. You can do something to change the future of medicine.

I wrote my small book with simple thoughts in mind - to make my family and friends understand what epilepsy is [in simple words]. Writing became my hobby. My daughter spent days editing it. There were many versions; she diligently worked on every one. The linguistics is not the strongest part of the book. What is strong is making the brain a new brain. It twisted and turned for nearly a year. 

In the end, there was a product, a book I love. I have included excerpts from Chapter 17.

17. IN THE STIGMA WORLD

My first office seizure is deeply ingrained in my psyche. I was on the carpet; the whole office had gathered around me. I was already "back." One woman asked if I had a grand mal seizure. Someone, who had seen seizures, answered affirmatively. Up until this point  I had merely talked about my disease -- now my undercover work with seizures was revealed.

I was not scared. The people present were. If I was able to talk, I would have sounded very apologetic. I did not mean to scare anyone. I would have reassured them "I will be fine. I just need to go home and take a long nap."

At this company, I chose the path of saying "I have seizures." It did not mean much to me, so I chose the road of saying it openly. If you have cancer, you go through chemotherapy and radiation; if you have epilepsy, you go through brain tests, plenty of seizures, medications, changes in medications, more tests, and more seizures. Normal stuff... Everyone gets sick.

It is normal to me; it became normal to my husband to get a call about a seizure and drive to pick me up. It is still not normal to the outside world. Unfortunately, the disease still carries stigma, misconception, discrimination, even disgust, if it appears right in front of your eyes. It is a condition that drives people away from you. I could not get my mind off of how I looked when the paramedics arrived one time. I felt small; I knew no matter what I do from that day on, everyone would remember this scene; no one would accept me for who I am.

One day, I fell on the stairs going from one office building to the other. The sidewalk was next to a major street. The vehicles had stopped waiting for the light to turn green. This was a three lane street. NOT a SINGLE person came to check on me. ALL of them witnessed the seizure. It was clear even to someone who had never seen a seizure that at the very least I needed help. I was not able to get up. Then slowly, with bruised knees, all pale, I made it to the next office building. I had a meeting scheduled. The world was not going to end if I did not show up in time for a meeting yet I plodded along to it, dutifully. Sad.

Julius Caesar, Alfred Nobel, Neil Young, Charles Dickens, and Lev Tolstoy also had seizures. Since ancient times In Mesopotamia, the seizure disorder was known and studied. 
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I still do not know if their talent stemmed from epilepsy or if they simply happened to have epilepsy. History books talk about people with epilepsy "being possessed," 'being chosen," men being burnt at the stake, women deprived of their ability to bear children.
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I believe I am hurt more by the PEOPLE, not by the disease. 
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The disease created some idiosyncrasies in my behavior, but they are now a part of me. I am either accepted with them or not accepted with them. This is a package deal.

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