I linked to another member's website today and their life experiences touched me so much, that I felt like sharing my own story.
When I was about 8, it was found that I had "some sort of disorder", but it wasn't until about 13 that I was actually diagnosed with Hirschsprung's Disease -- a fairly rare congenital intestinal disorder. I'll spare you the gory details, but you can always "wiki" it.
During the 5 years in between it was thought that my disorder was mental -- like I was doing it for some sick means of getting attention.
I was sent to shrink after shrink, but none of them could figure out what was wrong with me -- big surprise there, right? The reason I wasn't diagnosed with HD sooner was because the doctors involved either didn't consider looking for it, or when they did, they botched the tests. These people were considered to be some of the best in their field, so their failure to find anything physical only reinforced the misconception that the problem was mental. Being from a poor family, most of doctor bills were paid by some sort of public entity, so for the most part, I wasn't getting the cream of crop.
To make a very long story short, my entire childhood and many of my young adult years were affected by this ailment. Though the actual condition is internal, over time it affected my physical appearance. When I was a young teen, I essentially looked like I was 9 months pregnant. The extra weight I was carrying made me hunch over, made me walk funny, etc. So, I did what most kids who are embarrassed of their bodies do: I covered it up.
When I was about 15, I had corrective surgery. It wasn't a "cure", but it alleviated some of the symptoms of the disease. Over time, my body healed itself to the point where I looked "normal", but it took over 10 years to get over the mental effects.
In my mind, there is nothing more traumatic to a child than being different. Many are taught that one should be proud of these differences, because they help define our persona and make us unique. Now that I am an adult, I can appreciate this ideal, but from about ages 5-20, there were really no positives I could see. There is absolutely nothing positive about suffering the finger-pointing, the pitiful stares, being called "deformed", or having a parent say that you're a burden and that they wished you were never born.
These are things that resonated in my mind into my adult life. I have gone through the spectrum of emotions...from self-loathing, to intense anger toward or resentment of others, to extreme guilt and melancholy, and more recently, to the feeling of happiness, content, and peace.
Having been ill a majority of those years, I kept indoors, I wore oversized clothing, I avoided my own reflection in the mirror. From about 15 until my late 20's, I suffered from severe depression of the worst kind. My surgery helped relieve some of the more severe symptoms, but even to this day, I always seem to be in some sort of pain or state of discomfort. It's tough sometimes, especially with respect to intimacy, but I grin and bear it.
A few years ago, I finally began to feel more confident about myself, and consider my past to be a learning experience and something that has made me a stronger person. I also realized that it is true what they say about a physical disability amplifying other senses -- such as a blind person must depend on their hearing to "see". In my case, I feel my past physical deficiencies amplified my mental and creative abilities.
At this point in time, I embrace what I consider to be my talents. My insatiable thirst for knowledge, my fondness for the artistry of cooking and physical sciences (e.g. music), and -- as a friend and former employer described -- an uncanny ability to befriend people and put them at ease. I am just getting to the point where I am exploring these talents, and I see my potential as being infinite. I'm hardly perfect mentally or especially physically -- none of us are -- but this is my offer to the rest of humanity.
I would like to think that sharing my experiences is not a means of "fishing" for pity or compliments -- in fact, I almost resent them. I have already made peace with myself. What I do hope is that if I can reach out and touch just one person, my "work" here will be complete. Instead of people saying "I'm sorry" or "That's terrible", I'd prefer they said "Thank you" or "I'm better having known you." To me, this is what sharing is all about.
Sharing also helps lighten the burden of carrying around all this emotion. In the past, this has been my proverbial albatross, but now I see it as a means of redemption. It's like carrying around a basket full of oranges...you share them with enough people, and eventually, your burden is gone...leaving you just enough to keep for yourself.
This is the sound of my soul singing....
p.s. Thank you, Maxi
When I was about 8, it was found that I had "some sort of disorder", but it wasn't until about 13 that I was actually diagnosed with Hirschsprung's Disease -- a fairly rare congenital intestinal disorder. I'll spare you the gory details, but you can always "wiki" it.
During the 5 years in between it was thought that my disorder was mental -- like I was doing it for some sick means of getting attention.
I was sent to shrink after shrink, but none of them could figure out what was wrong with me -- big surprise there, right? The reason I wasn't diagnosed with HD sooner was because the doctors involved either didn't consider looking for it, or when they did, they botched the tests. These people were considered to be some of the best in their field, so their failure to find anything physical only reinforced the misconception that the problem was mental. Being from a poor family, most of doctor bills were paid by some sort of public entity, so for the most part, I wasn't getting the cream of crop.
To make a very long story short, my entire childhood and many of my young adult years were affected by this ailment. Though the actual condition is internal, over time it affected my physical appearance. When I was a young teen, I essentially looked like I was 9 months pregnant. The extra weight I was carrying made me hunch over, made me walk funny, etc. So, I did what most kids who are embarrassed of their bodies do: I covered it up.
When I was about 15, I had corrective surgery. It wasn't a "cure", but it alleviated some of the symptoms of the disease. Over time, my body healed itself to the point where I looked "normal", but it took over 10 years to get over the mental effects.
In my mind, there is nothing more traumatic to a child than being different. Many are taught that one should be proud of these differences, because they help define our persona and make us unique. Now that I am an adult, I can appreciate this ideal, but from about ages 5-20, there were really no positives I could see. There is absolutely nothing positive about suffering the finger-pointing, the pitiful stares, being called "deformed", or having a parent say that you're a burden and that they wished you were never born.
These are things that resonated in my mind into my adult life. I have gone through the spectrum of emotions...from self-loathing, to intense anger toward or resentment of others, to extreme guilt and melancholy, and more recently, to the feeling of happiness, content, and peace.
Having been ill a majority of those years, I kept indoors, I wore oversized clothing, I avoided my own reflection in the mirror. From about 15 until my late 20's, I suffered from severe depression of the worst kind. My surgery helped relieve some of the more severe symptoms, but even to this day, I always seem to be in some sort of pain or state of discomfort. It's tough sometimes, especially with respect to intimacy, but I grin and bear it.
A few years ago, I finally began to feel more confident about myself, and consider my past to be a learning experience and something that has made me a stronger person. I also realized that it is true what they say about a physical disability amplifying other senses -- such as a blind person must depend on their hearing to "see". In my case, I feel my past physical deficiencies amplified my mental and creative abilities.
At this point in time, I embrace what I consider to be my talents. My insatiable thirst for knowledge, my fondness for the artistry of cooking and physical sciences (e.g. music), and -- as a friend and former employer described -- an uncanny ability to befriend people and put them at ease. I am just getting to the point where I am exploring these talents, and I see my potential as being infinite. I'm hardly perfect mentally or especially physically -- none of us are -- but this is my offer to the rest of humanity.
I would like to think that sharing my experiences is not a means of "fishing" for pity or compliments -- in fact, I almost resent them. I have already made peace with myself. What I do hope is that if I can reach out and touch just one person, my "work" here will be complete. Instead of people saying "I'm sorry" or "That's terrible", I'd prefer they said "Thank you" or "I'm better having known you." To me, this is what sharing is all about.
Sharing also helps lighten the burden of carrying around all this emotion. In the past, this has been my proverbial albatross, but now I see it as a means of redemption. It's like carrying around a basket full of oranges...you share them with enough people, and eventually, your burden is gone...leaving you just enough to keep for yourself.
This is the sound of my soul singing....
p.s. Thank you, Maxi
most people go to my site to see some pretty pix, and they always come back with a heartfelt message to me about my BIO instead, we are all human and there will always be HOPE.
kisses to you,
btw, my OCDF on my daily Journal is me tracking my progress and defeats outloud. it helps...