I hate myself

I don't really know why I am posting this. I mean, it's not like anyone really cares what my story is... but anyway... here goes nothing....

A little background on me...
I was born on January 15, 1986 - 14 weeks early.
I weighed only one pound and nine ounces and was only 12" long.
I was given less than a one percent chance of survival, and my parents were told that if I lived,
I would probably be deaf, blind, never be able to do anything for myself, basically be in a vegetative
state, and have absolutely no quality of life whatsoever.
When I was a few days old, I had a severe brain bleed and it was discovered that I had a condition called hydrocephalus
(where the fluid that surrounds a person's brain, and in this case blood, can't be drained off properly) when this happens,
normally doctors place a tube (called a shunt) into the head that travels down into and drains the fluid into the stomach.
Believe it or not, they actually suggested to my parents that they should not try any life-saving measures... and just let me die.
Thankfully, my parents told the doctors to do whatever they could to save my life.
So, the doctors put in the shunt, and I spent about three months in the NICU before it was determined that I was healthy enough to go home.
My mom tells me that I actually came home close to what was my scheduled due date!!!!

Today, I am only 4' 8" tall and only weigh about 79 pounds. And I have almost non-existent self esteem.
I have spent much of my life in and out of the hospital and had approximately 20 surgeries on just about every major part of my body.
I've had 12 shunt revisions (it gets clogged up with scar tissue and whatnot so they have to go in and replace it), I had my eyes fixed - I was born crossed eyed,
I had nerve surgery on my back, I had screws put in my feet in hopes that they would help stabilize my feet so I could walk.
I can walk for short distances with crutches, and for distance I use a manual wheelchair. My left hand has almost no fine motor skills.
I have a severe startle reflex. It is so severe that if I am standing up or walking, and I get startled, I more often than not end up falling down.
Anything and everything startles me. A car horn blows, a dog barks, someone comes up behind me and taps me on the shoulder, a door slams,
there is a creaking floor and I step on it and if I'm not expecting it I will startle.
I am very self-conscious about my disability (and myself in general). I hate hate hate it.
And it sucks, because I have had numerous people tell me, "You are not your disability.
But it seems like no matter how hard I try, I can't separate the two, and since I hate my disability, I hate my life...
I hate myself. (Hope that makes sense to someone) It's like, instead of seeing myself as a person...
who just happens to have a disability... I only see myself as disabled.

Sorry for wasting space posting this and your time if you actually read it.

Hi Bound, was school socially difficult?

School was hell on earth.

You are an amazing and courageous individual ((((((((((( Bound by Thoughts )))))))))))

Whenever and if ever you want to talk about that here, we are listening....

To have been given such small odds and then you turn around and beat them, that is strength. You are a very special person.

Sorry I have no advice or perspective to offer, I'm still struggling with not 'being my disability' as well, though its not on the scope of yours, I just haven't figured out how to seperate them. And I hate my life and myself, more now--but even before I was so limited.

(((((((((((((((((((((((((((((Bound By Thoughts)))))))))))))))))))))))))))))) You are a very brave and strong person. You have gone through so much that I can only guess how intertwined your disablilty is to how you feel about yourself. Can you find someone to work through some of this with? Know you are being heard here.

BB

Have you thought about joining a disability support or activist group? Being alone with these feelings can't be good - and there are so many people who are dealing with many of the same issues you are. And many of these problems aren't just your problems, they're everyone's problems. How disabled children are treated in schools, in their healthcare, in accessibility and accommodations. It might help you to get involved with groups that know what you're dealing with and are working to make things better. Anyway just a thought. But you are NOT just your disability. It's obvious from your post that you're an intelligent, valuable, worthwhile individual who shouldn't be allowed to fall through the cracks because of a disability.

Bound, it took a lot of courage for you to post this and I salute you for doing it.
Far too many people expect that disabled people are always strong and brave--well, you know the drill.
It was difficult for me to stop defining myself by my disabilities, too. I always felt that I had some kind of responsibility to keep on the mask of...sorry but I'm having problems putting my feelings into words!

let me try again...
We battle our own feelings of worthiness, the sometimes crappy attitude of others, overcoming challenges in our daily lives. But one that has been hardest for me is the battle I put myself into...the one where I was going to prove that I could do everything/anything I wanted, and do it better. In some ways, it was denying that I had limitations. Add in some anger that I did have them and I was not a happy person...or pleasant to be around. I was pushing people away from me.

It took a wee bit of therapy and short term meds to help me get a better grip on my life. There are days when I still feel the old anger and sadness, and this is all right. No one, absolutely no one, is singing and laughing everyday of their lives.
Sometimes it can be difficult to get off that roller coaster ride of low self esteem, little hope, and other harsh feelings. Taking the first steps was probably one of the hardest things I've done...it was that, though, or never knowing joy.

I sincerely hope you find your way to feeling better about yourself.
Cap

I would love to, but I can never find any.

you are posting it cause some where inside you you have got to understand that people do care it does not alway's seem or feel like someone cares but trust me someone out there who is feeling like you are cares and that would be me but other people aslo care sometimes' people can't show that they care cause they don't know how to but i hope that you start to feel better about telling people how you feel cause i am going through the same thing at time's i feel like i am just talking to talk and that no one is listeing to me or want's to hear me talk at that but then at time's i feel ok to tell people how i feel cause i know that is better then doing what i usuly would want to do when i feel so down about life so hang in there would you cause i often hate myself but there nothing i can do about it