I contemplated
whether to write this on a "note" or even on facebook. I tried to look
into doing a blog.. not just for emotional therapy but in hopes to help
understand or others (especially the friends I have on here with the
same birth defect as me.. Spina Bifida). I don't want to offend anyone
and this isn't to tear anyone apart or down. It is really me trying to
figure out where I belong and finding me. It will probably not make
sense.. not be in the right order, and jump from one thought or
another.. but I feel like I can't seem to figure it out in my brain so
maybe if I write it out, I will understand, or maybe my family will
understand, my children? How are they suppose to know what is wrong
with me even if I don't know what is wrong. I do know that I have had a
lump in my throat and tears close to my eyes for the last year (if not
longer) and it is something I just want to understand.It seems I never
fitted in but then fitted in everywhere. Not sure what that exactly
means or how to explain. I had/have many friends and family. Could
find something in common with pretty much everyone. But I never felt
truly comfortable with that setting. Maybe I didn't feel comfortable in
my own skin? I have thought about writing my life story. There is so
much I have blocked out and to be honest, it scares me to try to
remember things good or bad if they are blocked out. What more would I
have to deal with emotionally. I have always been the person if you
said I couldn't do it. .then I was determined to.
People or school teachers would ask "what do you want to be when you grow up?" My response would be "a mom". I remember I would see a look in their eyes and it was different than the looks they gave to other children as if my answer was wrong. I started responding later a secretary, a singer, actor.. anything but the answer mom. It put so much of a fear in me when I saw people's eyes when I said that mom answer that I didn't want to feel that fear, but the desire never went away. My whole life I have been boy crazy. I think it comes from that desire to want to be a mom. It was if I had a boyfriend then my goal of a mom was reachable. I got so consumed with the thought that one day I could be a mother that school wasn't important. I had to try to look fancy as much as I can. I knew my body was ugly. I could never be this small petite girl having to have big biceps to walk on crutches and braces. I seemed to have had the skill of hair and makeup. (at least I thought I did). I was never shy.. but as I think about it. .I am very shy and insecure and so that is why I talk so much. I have started to realize that the more I talk it is really the more I am being shy.
I got good at reading people's eyes. If I stated what I felt was in the people's eyes or tones.. many times people would say.. "no, you are reading it wrong." But I have found out in my 46 years that I could tell what people think about me. If they were nervous around me or found me weird, different, inspirational and it seemed the more I felt this the more insecure I became and the more I talked. So I am known as a talker. In many ways it has come to be handy to explain to the doctors well what is hurting or symptoms but I do realize it does make me overbearing and weird. But back to the goal. Finding that one to help my goal.. I felt as I said, I had to look a certain way.. make my hair and face look as good as I can that no one would notice the out of portion, frumpy, always looking overweight even if not, crooked body. Due to my leg braces, I would always have holes in my pants. that made me feel so insecure. I had to wear different kinds of shoes or larger than my feet shoes to fit over my braces. But I could work and accentuate my blue eyes or my dark hair. I was lucky to never have acne.. and pretty soft skin. Maybe it could get me attention. Not attention to be popular. Attention to be accepted in hopes that one day someone would love me to reach my goal to be a mom. Looking back, I wish I had studied more, wished I hadn't been so boy crazy, My parents, they did their best. I truly believe that.
Even though I knew something was wrong with my goal in people's eyes (such as school teachers when asked what I wanted to be).. when I got to the closer age of dating.. my parents did let me know I probably wouldn't date. I don't remember how they said it or when. I don't remember them actually sitting me down and stating it. I just knew they had let me known. They didn't do it to be mean. It was to protect me so when I didn't date, I wouldn't be let down. It made me more determined to date.. for I had to reach my dream goal of being a mother. I did have a boyfriend all three years in high school.. we had pretty much a normal relationship that 16 year olds have of dating, breaking up, getting back together, breaking up etc.. but I have found me from the time I had a boyfriend to even now to be the runner. To run, cry, scream, when things went wrong. People may say it is because I need drama... and I have actually pondered that and talked with counselors about that. That isn't the reason. The reason is I get so mad and frustrated when things can't go my way. Now that may sound selfish but please keep reading and hear me out. It is more about me not being able to do things because of my disability. I guess I am not good at making lemonade out of lemons
. I am truly not trying to be selfish and would give my last dime to someone else if needed... it is a frustration on what I have to give up on because of my disability or what do I have to take because of my disability. Example: high school.. when we had school dances.. they would put sawdust down on the floors so that the floors wouldn't get ruined.. (I guess). I knew I couldn't dance well. I have seen videos, and frankly it looks funny. I would see people dance around do the thumbs up or again that look as if I wasn't doing something normal and I was going out of the element because of my disability. My thoughts would be first of embarrassment as if why am I getting this kind of attention when I am just going out on the floor and try to move as best as I could as everyone else is. I didn't see anyone else getting the thumbs up.. Was I being courageous for going on the dance floor? What was my boyfriend thinking as he was getting the thumbs up too.. he was brave to go on the dance floor with me? So we would go on the dance floor and I would try to dance/move and boom I would fall. The rubber on my crutches slipped on the floor. The area I was at, everyone would stop dancing to help me up. I would just continue to fall because I couldn't get a steady grip because of the sawdust everywhere. We had gone to the principal or janitors and asked for them to sweep the floor so I could have a normal dance like everyone else. They swept a small place in the corner where it was dark, loud (by the speaker) and away from everyone. In the dating and relationship world, this is where I think I started to get lost. 30 years ago.. Lost because of wondering what was acceptable of me to demand/ask and what I needed to realize I just couldn't do. Was this the beginning of discrimination or just a simple reality. I also realized that my soul and body have had an ongoing war for all these years because my soul can do anything but my body just won't keep up. So in my mind, everything my mind wants to do and what I could do even with help should be done because my mind wants it.
Not sure if that is right but I guess that has been my personal war. Each dance after, there was a spot, in the dark, by the loud speaker basically with my name on it. No one to dance by us.. Us in the corner. The janitors didn't want people to really dance by us because they wanted the other people to stay on the sawdust to protect the floors. I remember from that point forward that I just really couldn't enjoy myself being so embarrassed instead of being grateful that they at least made me a spot where I didn't fall. I was dancing. That was the point. But in my soul I felt still left out. All I could concentrate on.. who cares about the floor? What about my feelings? I think deep down I was worried it was going to affect my boyfriend and he would get tired of it and the fear of losing him.. and the fear of losing my goal one day. There would be group song dances.. where you would dance in a circle or even exchange partners at times. It was done a lot even if on a date. Just the thing that was done. I would once again have this internal war within me.. be the good person and encourage him to do so but it would go deeper.. Those thoughts would go with tearing me down.. at least he came with me so I should just be grateful at that and it is okay if he goes off as everyone does and do the group dances. He would come back from the songs.. and my whole demeanor changed. I had this personal war within me because I didn't want to hold him back but was angry I was being held back.. angry that he didn't stay back with me. Angry that they were worried about their floor and not as worried about making me feel self conscious. Just angry. Or was it sad? I don't know. My boyfriend, at that time, is a wonderful person. I am so grateful he chose me to be his girlfriend at that time. The obsession of what was fair what wasn't fair.. what did I have to put up with being different, was it right to ask for special allowances, did I need to demand it to make them listen, should I be just grateful and accept anything because I at least got something? The internal war began.
People or school teachers would ask "what do you want to be when you grow up?" My response would be "a mom". I remember I would see a look in their eyes and it was different than the looks they gave to other children as if my answer was wrong. I started responding later a secretary, a singer, actor.. anything but the answer mom. It put so much of a fear in me when I saw people's eyes when I said that mom answer that I didn't want to feel that fear, but the desire never went away. My whole life I have been boy crazy. I think it comes from that desire to want to be a mom. It was if I had a boyfriend then my goal of a mom was reachable. I got so consumed with the thought that one day I could be a mother that school wasn't important. I had to try to look fancy as much as I can. I knew my body was ugly. I could never be this small petite girl having to have big biceps to walk on crutches and braces. I seemed to have had the skill of hair and makeup. (at least I thought I did). I was never shy.. but as I think about it. .I am very shy and insecure and so that is why I talk so much. I have started to realize that the more I talk it is really the more I am being shy.
I got good at reading people's eyes. If I stated what I felt was in the people's eyes or tones.. many times people would say.. "no, you are reading it wrong." But I have found out in my 46 years that I could tell what people think about me. If they were nervous around me or found me weird, different, inspirational and it seemed the more I felt this the more insecure I became and the more I talked. So I am known as a talker. In many ways it has come to be handy to explain to the doctors well what is hurting or symptoms but I do realize it does make me overbearing and weird. But back to the goal. Finding that one to help my goal.. I felt as I said, I had to look a certain way.. make my hair and face look as good as I can that no one would notice the out of portion, frumpy, always looking overweight even if not, crooked body. Due to my leg braces, I would always have holes in my pants. that made me feel so insecure. I had to wear different kinds of shoes or larger than my feet shoes to fit over my braces. But I could work and accentuate my blue eyes or my dark hair. I was lucky to never have acne.. and pretty soft skin. Maybe it could get me attention. Not attention to be popular. Attention to be accepted in hopes that one day someone would love me to reach my goal to be a mom. Looking back, I wish I had studied more, wished I hadn't been so boy crazy, My parents, they did their best. I truly believe that.
Even though I knew something was wrong with my goal in people's eyes (such as school teachers when asked what I wanted to be).. when I got to the closer age of dating.. my parents did let me know I probably wouldn't date. I don't remember how they said it or when. I don't remember them actually sitting me down and stating it. I just knew they had let me known. They didn't do it to be mean. It was to protect me so when I didn't date, I wouldn't be let down. It made me more determined to date.. for I had to reach my dream goal of being a mother. I did have a boyfriend all three years in high school.. we had pretty much a normal relationship that 16 year olds have of dating, breaking up, getting back together, breaking up etc.. but I have found me from the time I had a boyfriend to even now to be the runner. To run, cry, scream, when things went wrong. People may say it is because I need drama... and I have actually pondered that and talked with counselors about that. That isn't the reason. The reason is I get so mad and frustrated when things can't go my way. Now that may sound selfish but please keep reading and hear me out. It is more about me not being able to do things because of my disability. I guess I am not good at making lemonade out of lemons
. I am truly not trying to be selfish and would give my last dime to someone else if needed... it is a frustration on what I have to give up on because of my disability or what do I have to take because of my disability. Example: high school.. when we had school dances.. they would put sawdust down on the floors so that the floors wouldn't get ruined.. (I guess). I knew I couldn't dance well. I have seen videos, and frankly it looks funny. I would see people dance around do the thumbs up or again that look as if I wasn't doing something normal and I was going out of the element because of my disability. My thoughts would be first of embarrassment as if why am I getting this kind of attention when I am just going out on the floor and try to move as best as I could as everyone else is. I didn't see anyone else getting the thumbs up.. Was I being courageous for going on the dance floor? What was my boyfriend thinking as he was getting the thumbs up too.. he was brave to go on the dance floor with me? So we would go on the dance floor and I would try to dance/move and boom I would fall. The rubber on my crutches slipped on the floor. The area I was at, everyone would stop dancing to help me up. I would just continue to fall because I couldn't get a steady grip because of the sawdust everywhere. We had gone to the principal or janitors and asked for them to sweep the floor so I could have a normal dance like everyone else. They swept a small place in the corner where it was dark, loud (by the speaker) and away from everyone. In the dating and relationship world, this is where I think I started to get lost. 30 years ago.. Lost because of wondering what was acceptable of me to demand/ask and what I needed to realize I just couldn't do. Was this the beginning of discrimination or just a simple reality. I also realized that my soul and body have had an ongoing war for all these years because my soul can do anything but my body just won't keep up. So in my mind, everything my mind wants to do and what I could do even with help should be done because my mind wants it.
Not sure if that is right but I guess that has been my personal war. Each dance after, there was a spot, in the dark, by the loud speaker basically with my name on it. No one to dance by us.. Us in the corner. The janitors didn't want people to really dance by us because they wanted the other people to stay on the sawdust to protect the floors. I remember from that point forward that I just really couldn't enjoy myself being so embarrassed instead of being grateful that they at least made me a spot where I didn't fall. I was dancing. That was the point. But in my soul I felt still left out. All I could concentrate on.. who cares about the floor? What about my feelings? I think deep down I was worried it was going to affect my boyfriend and he would get tired of it and the fear of losing him.. and the fear of losing my goal one day. There would be group song dances.. where you would dance in a circle or even exchange partners at times. It was done a lot even if on a date. Just the thing that was done. I would once again have this internal war within me.. be the good person and encourage him to do so but it would go deeper.. Those thoughts would go with tearing me down.. at least he came with me so I should just be grateful at that and it is okay if he goes off as everyone does and do the group dances. He would come back from the songs.. and my whole demeanor changed. I had this personal war within me because I didn't want to hold him back but was angry I was being held back.. angry that he didn't stay back with me. Angry that they were worried about their floor and not as worried about making me feel self conscious. Just angry. Or was it sad? I don't know. My boyfriend, at that time, is a wonderful person. I am so grateful he chose me to be his girlfriend at that time. The obsession of what was fair what wasn't fair.. what did I have to put up with being different, was it right to ask for special allowances, did I need to demand it to make them listen, should I be just grateful and accept anything because I at least got something? The internal war began.
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