Dear Journal;
I have been thinking about what I wanted to write in Part 2 and I have so many thoughts running through my mind and I realized that is what OBS (and that is what I will be calling the Organic Brain Syndrome from now on.. who wants to type that all out all the time??!!!) is all about. A tangled web of confusion, a skein of yarn that was once so tightly wound, now knotted and strewn across the floor by two baby kittens perhaps getting into mischief.
Let's talk about sounds and how they affect me. From little on up.
When I was younger, I did okay. I was sheltered tremendously and went through many things no child should ever go through. But I found joy in the simple things of life that I would often escape to. That could be anything from my favorite doll Susie to Play-Doh, Crayola Crayons, Barbies, and a sandbox. I taught myself how to write cursive and would sit for hours on the floor in the TV room trying to make squiggly lines look like a letter. I was able to read and print write fluently by the age of four. I threw myself into books, reading a lot of Beverly Cleary when I was in 3rd grade on up. At 6 and 7, I was able to read The Wizard of Oz, Alice in Wonderland and titles in that same category of escaping and ending up in another world. These were not the picture books, mind you, these were the novels I was reading. At 8 and on up, I was intrigued by the Little House Series by Laura Ingalls Wilder. I was fascinated by anything old, antique or times of the past. I was never interested in the things my generation was interested in. First of all, I didn't know what they were. When I went to school, I felt like the oddball out. It always appeared to me that people were buzzing past me, chattering like monkeys, laughing; oh the laughing.... it was the one sound that annoyed me more than anything. Sometimes they were laughing at me and other times they were laughing amongst themselves about jokes or what happened the night before when "Ronnie" put "Tina's" head in the toilet, or laughing just because they were happy or amused. It was a sound I wasn't used to at home. To this day, I have a problem with the sound of laughter.
With OBS, depending on what stage one is at, you can get what I call "sister symptoms". They seem to be like symptoms of other ailments, mental problems or diseases when actually it is the mind and body breaking down. ADD and bi-polar are classic examples of this. Although I seem to have ADD and bi-polar, AND in fact been evaluated for these issues, I do not have them. OBS mirrors the symptoms. So, in that regard, getting back to the laughing... it annoys me, distracts me and I do not feel the joy that most people feel when they laugh. For example, if I am watching TV and my husband hears or sees something funny and he laughs, I easily get distracted and "feel" as if I missed part of the show.
Other sounds also bother me. Growing up, my home was pretty quiet. You wouldn't think so with 3 boys and 1 girl at home. But you see, my Dad was very sick all his life. And so for the most part, the house was kept quiet. The only noises I remember were what I called "controlled noise". Everything, everyone and every event; daily or festivity wise had it's time and place. Mom would play organ music while cleaning, Dad would play his country music when he, and I stress HE felt up to listening to it. Us kids had headphones. When we didn't have headphones, the music needed to be down really low to where you almost couldn't hear it. The television would be on when Mom or Dad turned it on. We were not allowed to turn on the tv by ourselves or change the channel. During the day if I were home on a snow day or non-school day, I would be put in front of the television. That's one of the reasons why I don't watch television that much. Also, the noise of it distracts me from whatever I am doing. However, at night, I have to have the tv on to sleep. Maniacal isn't it??
Yeah, so let's talk about music.
Growing up, as I said, I basically had headphones. Then I was pretty much fine with music until the past year or so. During that time, something has changed in me. I have found myself becoming more irritable, testy, annoyed easily and feeling a loss of control. This is where OBS is beginning to really rear it's ugly head. And it has become more clear to me everyday that OBS is beginning to be on the winning side and I am on the losing side.
Music and I used to get along. When the kids would turn music on, it wouldn't bother me, except for country music for a long time. That bothered me because when Danny and I separated in 2000 and we were apart for nearly five years, he met someone else and went to a club and danced to country music. Now, I have never seen him line dance or dance with her... I never met her at all... thank God... (there would had been blood shed for certain, can't stand the bitch.) but, knowing about what happened and knowing that he shared that with her (we never listened to country music that much together, except for Reba McEntire) I had pictures in my mind of the two of them and I could not stand to hear country music. It took me years since he has come back in 2004 to begin listening to country music. My mind tends to travel and goes through a endless time machine or an endless movie of the pictures I have made of my life. It often interferes with my daily life, my marriage, my parenting and just being. It can throw me into fits of depression, anxiety, even sometimes joy, excitability... I never know where I am going to be on the map that day.
As I have said before, most of this type of thing has been coming up in the past year or so. If I am working in my office, and someone turns on the tv or music, I tense up, my head fills with anxiety and feels like something was injected into it and makes my head feel very hard inside, swollen, uncomfortable. I try to ignore it, because other people who live in this house have a right to live! But I can't concentrate. I begin to make a huffing or sighing noise, I dart nasty looks in the direction of the person who I feel is invading my space. I keep trying to concentrate on my work at the computer or my bills or whatever it is I am working on and I tend to go blank. I recognize that I am getting annoyed and sometimes even angry, and I start a thought process in my mind to try to repair my thinking. I begin to talk to myself in my head and say to myself "Come on Yvonne, it's their house too, they have a right to live." or "You can do this. Try to refocus. You're going to run your family away and then complain later." It is a constant battle.
But the strange thing I have noticed about sounds is that if I turn on the music or the tv, I'm good. It appears to me to be a control thing; but I am not totally sure. I so totally do not want to be controlling. I did that once for awhile and it didn't feel good, I lost my marriage for a long time and it didn't give me any feel good silly stickers at the end. I like everything quiet, peaceful and serene. When I am working on the computer or doing something that requires the least bit of concentration, I need silence. Or talk to me when I am done. But... then this leads me into a sense of loneliness, depression and insecurities. Either way I go, I am damned. Playing tug of war with my mind is not easy. It is frustrating and tiring... I become much more easily exhausted just by trying to think about these struggles I am having. And this.... this is only the tip of the iceberg. There is so much more I battle with everyday in my life with OBS. Come with me on my journey, as I continue to take you into my personal world bit by bit with my worst enemy; OBS.
(The washer buzzer just went off, that was a noise.... it made me feel upset and annoyed because I was working on this blog entry and it interrupted me. I stopped and glared over to the vicinity of the cellar door. Normal people would just shrug it off and continue with their work and get to the laundry when they got done. With me, I feel as if it needs my immediate attention, being demanding in it's own little evil way. My right brain, the part that still functions properly as I think it does says to myself "Yvonne, it's a washing machine, forget it. It doesn't care if you never get down there to switch it over to the dryer." But I feel like it's a responsibility I must fulfill now, right now, or it won't ever get done and the thought of something sitting and not getting done bugs the hell out of me.) Welcome to my world!
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Tuesday, July 3, 2012
Organic Brain Syndrome and Me
Dear Journal;
Some days are better than others. Today is one of those days when I think that life is worth living for another day. At least for today. We shall see what tomorrow brings. I have not written in goons ages and I have lost what I needed to write. I think part of it is the computer. You type it into the computer and voila! You have lost the personal touch of a handwritten journal. I must admit though, that my handwriting isn't as nice as it used to be, especially if I am writing in a journal and tend to write fast. So perhaps, this may be better for my descendants to be able to read. But still, nothing like something handwritten.
I really wish I could dump what all I have on my mind. But there is something holding me back, and I know part of it happens to be my mother. I was never allowed to keep a journal when I was young. Although teachers encouraged it since as far back as I can remember. Even Patty Duke on the Patty Duke show had a diary. But my mother always kept telling me after she would read what I wrote: "Never write anything you don't want anyone to read." No personal thoughts, views or feelings. No matter how angry I got or bad I felt, what frightened me; I was never allowed to write it and feel ok. I could write light and airy things, like about marshmallows and fairy tales, how perfect my mommy is and things like that, but never anything about what bothered me. Or who I first kissed, or my most intimate thoughts. God forbid if I said anything negative. And so to this day, I keep worrying about hurting people's feelings. In the past when I was young, I did attempt to keep journals (or back then, we called them diaries). They always were found by my mother, read by her and confiscated. She still has them. I did venture writing in them personal things and it was used against me, held against me and a few other things. She even has the books I wrote to my children, of the letters I wrote to them while I was carrying them; and refuses to give them to me, or allow me to see them.
I don't know if I want to publish my journal. I do have that opportunity to with the program I am using. Again, I think I would worry about whom I'm writing about and what can I say or should I say. I reckon I can choose which journal entry to publish. That may work.
I just wish that people understood Organic Brain Syndrome and what it does to someone. I keep telling people to look it up. But I can see that they have done that and still do not understand the changes in my body, mind and soul that this disease has caused. Simply put, it has caused havoc in my life, both externally and internally. It is a slow, sad demise into an eternity of hell it seems. To watch the building blocks that I built as a child to become a woman and who I am today slowly rot and disintegrate is so frightening. Especially upon the eve of my first grandchild arriving. Upon watching my daughter Anneliese; whom I wanted to raise so badly, become a mother.... and my daughter Danielle; who is becoming a young woman, nearly ready to be a wife herself. My son James, who doesn't even know me... and I only know him enough to know that he is my son, the one I never got the chance to raise... to see his first steps... has stepped into adulthood without me once again. My children and my husband have no idea how hard I struggle to make memory pictures in my mind and keep them there in fear of losing them. Even my mom, I make memory pictures with her. My brothers too. But mostly, my children and my beloved husband whom I love more than life itself. My children are the blood that runs through my veins and if that ever dries up, I would simply die. I have experience with this first hand. When I was in high school, about to graduate... my father one morning, did not remember me. He did not know me. He did not know my mother. I had to go to school that day that way. It frightened me terribly, I felt lost. Even though he was lost, I felt lost too. It was like the notes on the blackboard for the next day's quiz were erased and I had no idea what the answers would be. Little did I know, that less than 3 years later, I would be diagnosed with a brain disorder. I was told that I was born with it, the two nerves in the back of my head are twisted and not straight up and down as they should be. My mother was with me, when they told me that I had a birth defect. She immediately went into a rage and defended herself desperately as if she were on death row and that this was her last appeal. It was never about me. It was always about her. I did not and do not blame her for what happened to me, but I guess she assumed it was her fault as she had a child who had a severe birth defect. In 1997, when my baby girl was 2 years old, I was then diagnosed with the dreaded Organic Brain Syndrome. I was lost one day with Danielle and I had a MRI done. They told me about the OBS (Organic Brain Syndrome), and that it was the beginning of Alzheimer's. I have the dementia side of OBS. Gray matter is splattered on my brain as if there is gray paint splattered on a perfectly painted piece of art. Those areas of gray matter are dead brain cells. Some of them are just dying.
I have to go for now, to get my housework done and some other things. But I will try to write again and the next time I write, I will write about the effects that OBS has on me personally. It will not a pretty picture, but it must be said so that people can try to understand and maybe, just maybe, someone can help find a cure for it or to make another person with OBS feel better knowing that they are not alone.
Some days are better than others. Today is one of those days when I think that life is worth living for another day. At least for today. We shall see what tomorrow brings. I have not written in goons ages and I have lost what I needed to write. I think part of it is the computer. You type it into the computer and voila! You have lost the personal touch of a handwritten journal. I must admit though, that my handwriting isn't as nice as it used to be, especially if I am writing in a journal and tend to write fast. So perhaps, this may be better for my descendants to be able to read. But still, nothing like something handwritten.
I really wish I could dump what all I have on my mind. But there is something holding me back, and I know part of it happens to be my mother. I was never allowed to keep a journal when I was young. Although teachers encouraged it since as far back as I can remember. Even Patty Duke on the Patty Duke show had a diary. But my mother always kept telling me after she would read what I wrote: "Never write anything you don't want anyone to read." No personal thoughts, views or feelings. No matter how angry I got or bad I felt, what frightened me; I was never allowed to write it and feel ok. I could write light and airy things, like about marshmallows and fairy tales, how perfect my mommy is and things like that, but never anything about what bothered me. Or who I first kissed, or my most intimate thoughts. God forbid if I said anything negative. And so to this day, I keep worrying about hurting people's feelings. In the past when I was young, I did attempt to keep journals (or back then, we called them diaries). They always were found by my mother, read by her and confiscated. She still has them. I did venture writing in them personal things and it was used against me, held against me and a few other things. She even has the books I wrote to my children, of the letters I wrote to them while I was carrying them; and refuses to give them to me, or allow me to see them.
I don't know if I want to publish my journal. I do have that opportunity to with the program I am using. Again, I think I would worry about whom I'm writing about and what can I say or should I say. I reckon I can choose which journal entry to publish. That may work.
I just wish that people understood Organic Brain Syndrome and what it does to someone. I keep telling people to look it up. But I can see that they have done that and still do not understand the changes in my body, mind and soul that this disease has caused. Simply put, it has caused havoc in my life, both externally and internally. It is a slow, sad demise into an eternity of hell it seems. To watch the building blocks that I built as a child to become a woman and who I am today slowly rot and disintegrate is so frightening. Especially upon the eve of my first grandchild arriving. Upon watching my daughter Anneliese; whom I wanted to raise so badly, become a mother.... and my daughter Danielle; who is becoming a young woman, nearly ready to be a wife herself. My son James, who doesn't even know me... and I only know him enough to know that he is my son, the one I never got the chance to raise... to see his first steps... has stepped into adulthood without me once again. My children and my husband have no idea how hard I struggle to make memory pictures in my mind and keep them there in fear of losing them. Even my mom, I make memory pictures with her. My brothers too. But mostly, my children and my beloved husband whom I love more than life itself. My children are the blood that runs through my veins and if that ever dries up, I would simply die. I have experience with this first hand. When I was in high school, about to graduate... my father one morning, did not remember me. He did not know me. He did not know my mother. I had to go to school that day that way. It frightened me terribly, I felt lost. Even though he was lost, I felt lost too. It was like the notes on the blackboard for the next day's quiz were erased and I had no idea what the answers would be. Little did I know, that less than 3 years later, I would be diagnosed with a brain disorder. I was told that I was born with it, the two nerves in the back of my head are twisted and not straight up and down as they should be. My mother was with me, when they told me that I had a birth defect. She immediately went into a rage and defended herself desperately as if she were on death row and that this was her last appeal. It was never about me. It was always about her. I did not and do not blame her for what happened to me, but I guess she assumed it was her fault as she had a child who had a severe birth defect. In 1997, when my baby girl was 2 years old, I was then diagnosed with the dreaded Organic Brain Syndrome. I was lost one day with Danielle and I had a MRI done. They told me about the OBS (Organic Brain Syndrome), and that it was the beginning of Alzheimer's. I have the dementia side of OBS. Gray matter is splattered on my brain as if there is gray paint splattered on a perfectly painted piece of art. Those areas of gray matter are dead brain cells. Some of them are just dying.
I have to go for now, to get my housework done and some other things. But I will try to write again and the next time I write, I will write about the effects that OBS has on me personally. It will not a pretty picture, but it must be said so that people can try to understand and maybe, just maybe, someone can help find a cure for it or to make another person with OBS feel better knowing that they are not alone.
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