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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MY MATH TEACHER - Mancho Nenchev

MY MATH TEACHER - MANCHO NENCHEV

Everyone has a favorite teacher from High School -- the one, who deserves credit, or be blamed for the human/math being I have become; the one who was simply the BEST. 

Everyone wants to believe (at least I do) that it is my unique math aptitude, which served as a premise for his encouragement and motivational words. 

It has been many and many years since I was in High School.... I suffered from a brain infection, which left me with seizures. But, no matter how much brain is in my head, there is still a reserved space for the teacher from whom I learned the most. It is not just maths he taught. Mancho Nenchev was bigger than maths. In fact, the math lessons are gone, I do not remember much; sadly, Mancho passed away several years ago, too. But he left behind the Art of Teaching. 

I will not call him Mr. Nenchev, he will not forgive me this grandiose language, he will always remain in my heart as бай Маньо (in Bulgarian.) 

As if it was yesterday, I see him walking between the rows of desks talking to us and sometimes singing. You must really enjoy what you do to sing in class. I was so fortunate; the song he loved the most was bearing my name. As one classmate put it recently, the song "Imala Mariana" was "the hallmark song of his, with you in it." This song was very popular at the time; it was performed by one of the most famous singers; it had some jingle rhythm. "Imala Mariana" is a happy, jovile song.

In the song, Mariana had a big, good heart and a hat with a feather. While walking through the little town, she met a boy. They said "hi" to each other. The boy asked if she would give him the feather, but Mariana started laughing. She laughed so hard that her hat fell. Then, she "negotiated" to give the boy the feather, but get his heart in exchange. And the boy surrendered. He gave her his heart. 

This is a free translation. All you -- teachers and poets, please let me have this song my way. Afterall, the song has my name on it.

By the end of the song, the math problems were solved; the new lesson was taught. Everything was smooth and easy-going.

I visited Bulgaria 4 years ago. It was my birthday. The family had decided to celebrate it in a nice folk restaurant with live music, folk dances and fantastic food. When the singer came to our table to ask me what song I would like her to sing for me, I answered right away "Imala Mariana." But, she wanted to play another birthday song, more appropriate for today's times.

I was disappointed. It felt like my time had passed away. "Imala Mariana", with бай Маньо singing it, had passed away, too. 

What is left is the BIG heart of a BIG Teacher. It will beat with his students' hearts. Chi-chi-chi-la-la-la....

Blog disclaimer: The content of the blog post is based on current interpretation of events, which may have occurred in the past. What I write on my blog is not to be taken as fact nor absolute. No harm intended.

A PASSENGER IN AN AIRPLANE

Picture courtesy of Frank Bryan

A PASSENGER IN AN AIRPLANE

I am not a road warrior. Even if George Clooney were to be my mentor (as in Up In the Air movie,) I would not have been excited to travel. But I have worked with road warriors. Once on the road, they just can't stay home for a long time. They can live out of a suitcase, work from state to state, without being bothered in the least.

This disconnect between travel in the airplane and the place of my final destination, has a lot to do with my medical condition -- feeling safe and secure only at home.  Once on the way to the airport, the world becomes bigger and unfamiliar. The secondary effects from my medications become primary. To my husband's embarrassment, I want to hold his hand all the time. The panic is overpowering. Everyone in this crowd knows where they are going, what they are doing, they move like robots, armed with suitcases and carry ons; voices, noises - it feels like I am the only one lost. Still, there is one location with relative safety - the bar. I can calm down there. I would have coffee and danish (more than one.) The airport Hell would be sugar coated. 

The next circle of Hell starts once on the plane. I am disabled, thus included in the group for early boarding. Since for us it takes longer to be seated, the plane seats our group first. 

You do not recognize my disability just by looking at me. You have to look at the pills in my purse. I am relatively fast physically. The dilemma is when a little electrical storm in the brain strikes. I have to be prepared for that. That is why I am so antsy, uncomfortable, on pins and needles.

My husband occupies the seat next to the plane's window. He likes to watch the world from above. I have 2 options. None of them works in my favor, though. I can sit in the middle, so that I can hold my husband's hand (in case I have a light seizure during the flight.) No one will notice what happens and I feel safe. 

The disadvantage of this middle position is that I almost always have another person sitting on the other side, who does not understand the concept of personal space. Everyone looks for convenience in the airplane since everyone pays the same price. Only business class people are "special." If you see a 120 lbs woman, you will love to sit next to her. I am the one you want to be next to. I am not chatty and if you do not occupy the full arm rest and sleep on my shoulder, we will enjoy to be neighbors. But if you leave me only tiny space to breathe or stretch my legs, then I will put my grouchy pants. I will be quietly miserable.

I have tried to put my husband in the middle seat, too. He is 6'3'', normal weight man. In the middle of the flight, we switch positions, because, he cannot endure what I can. Afterall, I am half his size. No place for his legs, for his arms, or body. 

This is not all. Some sweet kids are (naturally) pooping in their diapers more often that others. This is normal. Ultimately, we will all go back to the beginning one day. But kicking my seat for an hour, while the parent is watching a movie is enhanced torture. I am afraid to look back and say something to the parents. What if the child starts crying?  I do not want to upset him. I will kick the front seat too, if I am bored flying, or listening how great I am. Moms always brag about their kids. I know from personal experience. There is always "awww of the "awwws" time every passenger owes moms, when describing their kids accomplishments. This was also the time to not allow anyone else to sleep. 

But mommies and daddies, we have to negotiate the bragging and sleeping time. Especially, if it is an overnight international flight.

On one occasion, I was not feeling well, Gary was in his window seat, thinking how good it will be to have his own plane to fly across the ocean. Next to me was an (obviously) business guy, who had closed his iPad (good call) and was taking a nap. The flight assistant asked me if I needed anything. I asked for icy water. She brought me some. Unfortunately, I was so clumsy and uncoordinated, the ice cubes landed on the guy's family jewels. He jumped up. I have heard Americans say, "I am sorry, I am sorry!" He rigorously started wiping the ice from his precious area. The flight attendant came back with more tissue paper. Needless to say, the surrounding rows saw what I did. 

I was still into this American "I am sorry" mode: I was ready to help him wipe himself, too. He did not say a word, just got up and went to the bathroom. During this whole fiasco, what did my husband do? He was still counting the clouds, looking in the opposite direction to where I was. It was not hard to read his mind: "I have not had sex with this woman. I am not related to her either."

We landed soon. My neighbor could not wait to get out of the plane.

I looked at my husband and asked him why he did not come in my defense. He said, "Because it was so funny.... What could I possibly say. Sorry, man, my wife does stuff like this all the time. You'll be fine. You should hear what she did last time to another guy.... She does not mean harm. Sh.... happens and she is always in the middle of it." 

The gist of it was that I found it very funny. I had to hold my breath behind the "I am sorry!" in order not to explode. It was not like a big suitcase fell on his head. Now, that would not have been funny. But some ice on your balls with your shorts on -- that is nothing!

Picture provided by David Contillo Dominici/FreeDigitalPhotos.net

Blog Disclaimer: Any resemblance to real situations, real people, living or dead is purely coincidental. All characters appearing in this blog are fictitious.