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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THE THREE SECONDS

Picture by Frank Bryan

                     THE THREE SECONDS

I was not planning to write about a seizure disorder today. This is the medical condition I suffer from as a result of a viral brain infection. I was not born with it, but I live with it through all the brain cells' thunder and lightening. The brain cells fight with each other; they do not discharge energy the way they should, they keep firing and firing; they try to tear you up, just like the gusty winds two nights ago - they bang on the windows, growl, shake the front door. 

There is no spring, no summer, no season for the seizures. There is no inappropriate moment. You can't say, "Ms. Epilepsy, please come back later. I have company." The cells of the brain do not always carry out their electrical communication in peace and harmony. There is some politics going on." This is how I described the seizure disorder, or epilepsy, in my book Seize the Seizures. Treating "Ms. Epilepsy" as a living and breathing part of me turned her into the best therapy I could get (in addition to the big bag of pills.)

There are many types of seizures. Some are very violent; some give you a chance to keep a part of your brain in action. Through the years, I got to the point of having not the most mean ones. But two nights ago, I don't know why, Ms. Epilepsy was very cruel. It took me a whole day to recover.

According to my husband "the visit" lasted several seconds. A girlfriend of mine wanted to know "What happens during these Satanic seconds?"

First second: I am conscious. I stop breathing; my whole body gets stiff. I cannot talk, but try to make some noise; the body jerks, like trying to escape from a force -- bigger and stronger.... What is around me looks very blurred. I feel the hand of my husband rubbing my back and whispering "Breathe, breathe!" If he is asleep, I say to myself,"You are on your own. You have to fight!" I have no strength to touch him and talk.... I don't know, maybe I really want to be a hero, because I do not think clearly.

Second second: Like the first, but it gets stronger; the numbness takes over a bigger part of the body, I feel the lack of air closing my throat, choking me; repetitive movements of the body, struggle with my body and my head. Over and over. The fear and anxiety settles in.

Third second: I get weaker and weaker. The world gets darker and darker. I may black out briefly, but I am still capable of thinking that I have to start breathing. 

I always do! Rarely, I don't and lose consciousness.Very rarely.

But in this last one, I kind of gave up on myself. I just laid on мy back and "was ready." Then, all of a sudden (per Gary's description), just at a snap of a finger, I started breathing.  

It took a day to recover, but today I am writing. Hey, life goes on!

I listen to a lot of music. This song describes best the mixture of this 3 seconds of life - mixture of music, feelings, being alive.... I chose The Piano Guys with their Disney's "Frozen" to bring back my happy, happy after the three seconds and one day after....