FRIENDSHIP and DISEASE --part 2

FRIENDSHIP and DISEASE -- part 2

Pic courtesy of Ralitza Tchiorniy

This blog post is about the friends I have and about those I have lost as a result of being sick.

One beautiful day in May, I got sick. This day turned into weeks, months, years. My denial of the disease turned slowly into acceptance and realization of the good and bad the disease brought to me. Instead of reading all my beautifully written papers from the past, I finally put an implant in my head with the sign: "This was the past! Enjoy it! The good thing is that there is now!"

Some people show interest in learning about diseases for the sake of getting information. Another group is more worried, "What if it happens to me tomorrow?" The happy-go-lucky ones are 110% sure, "It will never happen to me!"

One day in May, a viral brain infection hit me. It left scars behind, but it also left me to deal with them. From hiding, to openly talking about seizures, psychological side effects, communication, feelings.... And friends. This is the road of the survivor.

You can lose friends due to all kind of diseases. Sadly, you may not even know exactly what caused their death. There may be many people around you with seizures, too. They function perfectly well, they take, or do not need medications. But, there is a group of unlucky 1/3 of the people with seizure disorders, whose seizures cannot be managed. With time, the types, the treatment techniques and side effects change.

Ignorance always remains the most difficult to fight and cure.

My story is not unique. I am one of the one third. My writing is as good as it gets with the amount of  medications I have to take in order to live. Sometimes, I ask my daughter to edit. She edited my memoir "Seize the Seizures" a number of times. In my blog, I just do my best.

With social media, the number of friends skyrockets. I take being a friend to someone much more seriously. I pick them one by one. Forgiving those who hurt me because of my disease-related deficiencies is a must. They just do not know what in God's name they are doing.

In my life with the disease, I have observed several types of friends. The friends who depart gradually, tip-toeing away from me. I call them in my memoir the "fill-in-the-gap" friends. We spend some time together. I listen to their problems more than they listen to mine, give support, and joke. I never see their friends. At some point I realize, I have been taken for a ride, but not to Starbucks. I am simply "laid off" as a friend. "Just not a good fit." This is how a business will word it. "There has been restructuring in the Friends Department."

There is another group of "Miss you" friends. They do not come to see you, or go out with you." We should get together soon!" Sounds sweet, can bring even tears. But the distance between our houses is a couple of hours. Maybe, there was a tornado, thunderstorms I slept through, raging fires, The Chesapeake Bay Bridge collapsed. Yes, that is it. "Soon" was stopped because of these unpreventable, natural events.

There is also a group of "direct offenders." They will explain with disgust how most of the "disabled people" they know are mean and needy. One cannot understand them. My advice will be: google their disease. If he is constantly ending up in your house, help him find his way home. He is lost today, you may be lost tomorrow. No one can understand you better, than the one who has already been lost.

BUT, in this world of hours, there are REAL FRIENDS. You do not need them every day, they may be busy with work, kids, grandkids, parents. I do not need to discuss anything with them. THEY KNOW.

I am fortunate to have real friends. The High School ones are very precious to me. After being in a medically induced coma, I spent time figuring out what my life was and what it is now. In the coma, the brain shuts off everything horrific in order to heal itself. The brain is smart!!! How do you live without knowing who you were? I was hungry to learn all that my friends remember. They remembered too much: I was good at math and English; I was a nerd, but had my life on the side; I was writing good love letters; I was paying close attention to what teachers were wearing -- old-fashioned clothes or stylish ones. Another one said I was smiling a lot. Not very easy-going, one said. Snappy and feisty on occasion.

While writing my memoir, everyone I knew plus some new schoolmates I got in contact with later, were getting 40-50 e-mails with questions. They never said, "I told you already." With patience, they described the same stories over and over again. Why, what, who, when, where were flying back to them. Some answers were totally irrelevant to my condition, but they answered because I asked.

When you love someone, you have a difficulty having a meaningful conversation. You stare at each other with a locked mouth. At least, this is what I think.

I went on vacation to Bulgaria. I met my friends for minutes. My timing was not planned well. The minutes were filled with kisses, touching faces, crying. I swallowed these seconds, they are in my throat even now.

I have lived long enough in U.S.A. to develop many friendships. But there are two I cherish the most. It does not matter how I met them. The connection between us is like between Winnie the Pooh and Piglet.

"Piglet sidled up Pooh from behind. "Pooh?" he whispered.

"Yes,Piglet?"

"Nothing,", said Piglet, taking Pooh's hand. "I just wanted to be sure of you."

A.A.Milne

 

Blog Disclaimer:  All content provided on this blog is for informational purposes only. The owner of this blog makes no representations as to the accuracy or completeness of any information on this site or found by following any link on this site. Some characters are fictitious or composite. The owner of this blog will not be liable for any errors or omissions in this information nor for the availability of this information. The owner will not be liable for any losses, injuries, or damages from the display or use of this information. Everything here is true, but it may not be entirely factual. In some cases I have compressed events; in others I have made two people into one. This terms and conditions are subject to change at anytime with or without notice.

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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COMING TO AMERICA (part 2)

Picture by Frank Bryan

 COMING TO AMERICA (part 2)

Coming to America cannot be a blog running in an orderly fashion. My intent is not to write a memoir -- chapter by chapter. I may do it at a later stage of my life.

In 1993, there were no precedents to follow; there were no books for dummies. Meeting a Bulgarian at school in Washington, D.C.? Even if this were to happen, I do not remember help coming in bulk. 

In this bubble of the unknown there was a flash light - THE ENGLISH LANGUAGE.

All of us three, were speaking the language. This allowed me to write a resume,  although I did not know that certain things were not such big accomplishments in USA. Having been in France for an internship did not translate into a gigantic level of IQ. It probably distracted the admission officers and made them think about a trip to Paris, wine, nice food, but academic success? Translating what corresponds to 'research assistant' into 'scientist' wasn't correct either. Having a Bachelor's degree from a communist university does not equate to business acumen in 1993, [but it did not hurt, I thought]. 

The hard days of babysitting, crying  from exhaustion and worrying what tomorrow will bring -- non of this did speak about my ability to be a good student, ready to be successful in a business graduate program. The good score on GMAT was a surprise. My math teacher from the English Language School in Bulgaria (God bless his big heart) would have been proud of it. Almost perfect. The English was not bad either. Having the resume typed by my ex-husband at his university, he and and I circled all universities in the Washington, D.C. area. Maybe, a few universities were skipped....They looked like castles; the air did not smell like they need a "Bulgarian immigrant." There was no such thing as a "Bulgarian immigrant."

The one who went to school a few days after "COMING TO AMERICA" was my daughter. Someone said to her at the place we stayed, "Are you playing hooky from school?" That was a signal for both parents to realize her school SHOULD be on the list right away. And IT WAS. With her weird clothes, funky accent, not popular style hair, not popular anything, she never missed a day of school. She was clean, combed, did her homework every day, BUT that was not enough. She never saw a birthday party; she was never invited to one. There was no time for a walk on the Mall....

I have to say again what is already in my published book "Seize the Seizures" : SHE was ready. The kids were not. The parents were not ready either.


To be continued....


 

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....