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I Have BIID, I Am Buried Alive
Written by Silent on Tuesday, January 27, 2009
I am buried alive. The person that I am is under layer upon layer of fear and shame, of denial and suppression. I have known from that first day, 10 years ago, when I first searched the internet and found I was not alone. I have BIID.
My BIID is documented in my baby book. Alongside the descriptions of me walking for the first time, taking those few tenuous steps that I would later wish I had never taken, was a description of how as a two year old I would put on sock after sock after sock, piled one on top of the other on my feet. I would have a huge ball of a foot, all covered in socks. But I did it over and over, almost compulsively, because my feet would be immobilized. I was two, and I knew that was the way they were supposed to be. My mother would ask me, Why? Why do you do that? I couldn’t answer then. If she were to ask me that today, I still couldn’t truly answer her. It is the way my legs are supposed to be.
I know how ridiculous it sounds. I know about the human body, I know that I’m supposed to have legs that kick and run and stand. I even like to dance. I would give that up to be able to be honest, to have the outside match the internal sense of myself which I have always had.
In childhood I would use building toys to create leg braces and crutches for myself. I would tie my legs to golf clubs or broomsticks. I used large poster tubes to prevent my legs from moving because then I could pretend I couldn’t move them. I used a wooden plant stand as a makeshift wheelchair.
I’m an adult now, a fairly successful and productive member of society. I am blessed with many close, caring friends. And yet, otherwise sane, I find myself fantasizing about plans I know are ill advised. Can I escape to a faraway country and have a doctor there freeze the nerves in my legs, and convince everyone I had an accident or came down with some sudden disease? I find myself lurking on listings for used wheelchairs. I find myself buying ankle braces off the internet and having them sent to a P.O. Box and hiding them in a locked bag in my apartment. I hate these desires, and almost to the same degree, I hate being secretive.
But how can I possibly admit these feelings? How can I explain to someone who hasn’t had these ideas their whole life? That me not being able to move my legs is as right to me as being able to wiggle your toes is to you? I know how it sounds. In many ways, it sounds just as strange to me. That is why it is an unending spring of shame for me.
I have never told anyone. I have not even written the words in a diary. I’ve never said them out loud to myself, even when I was alone in the dark. These words I’m writing here are the first time I’ve admitted this, even though I still can’t even bear to write my real name or give my real email address even to people whom I know share these feelings.
At least I know I’m not alone. I read this site, then I purge my browser’s history. I read it again the next day, cry, and purge my browser’s history. I do it over and over again. I wonder how long I can do this, and realize that I’ve done it in one way or another for all of my twenty-some years on this Earth.
I dream about it every night. I wake up and I am thinking of it. What would life be like if I could wake up and think about my day instead? If I could sit up in bed in the morning and not be forced to stand on my legs. If I could finally be myself around my loving but unsuspecting boyfriend of many, many years, whom in every other way I trust completely?
Is there some way to get my brain to start over and rewire itself like a normal person’s? If not, do I want to paralyze my legs? Am I brave enough to do that?
I am shaking and crying as I write this, because I know it must go on, perhaps until I die – nobody knowing my true feelings, the true me. I also wonder why I’m writing this. Surely it is partly for me, to release the terrible self-hatred I feel. I’m also writing because I know there are people like me, who visit this site in silence, too ashamed to speak. Too ashamed to tell anyone. And I want to tell you that even though I will never know your names or meet you face to face, you aren’t alone. I also want people who visit this site who don’t have this disorder to know that there are probably many more of us suffering silently. If you can open your mind and accept us, someday we can accept ourselves, put the shame behind us and work to become better – in whatever form that takes.
Tags: BIID, Paralysed, Wheelchair
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9 Comments
Silent no longer. You have done yourself a great favor by expressing yourself about your BIID, and you have done us a great honor by confiding in us. I wish there were an effective way to send a big hug over the internet. What you describe is so, so real.
Once in a while somebody writes a post that starts me crying (not a bad thing). This is one such. Is it because I see a part of my soul reflected in the mirror? It is that, but it is more than that. It is because you are out there, a real person. I understand everything you say, and because of that I know you understand me too. After decades of feeling alone, the knowledge that I am not alone is still overwhelming. Thank you for breaking your silence. I also send you a big hug. The kind with tears, that lets you know that you are truly not alone.
I am so glad you found us. I was where you are just a month or so ago. I feel better for sharing – more supported, less alone. I am working on the shame and guilt, but that’s hard. I have taken a few important steps to deal with the silence. And I am slowly finding ways of getting some relief from the unbearable need that I cannot meet. We’re here for you.
You are among friends here, you will not be judged. Hopefully, this will aid you in learning to deal with your feelings. Now, the most important person in the world, Yourself, will know your feelings, and hopefully accept them.
You can account for this as far back as the age of two years… If that is not proof that this is something we are born with, then nothing is.
Welcome. Let it out. We, your peers, are here to support you and each other, if only in a small way.
(((((((((((Hug)))))))))))))
Thanks for that- great writing…
I also did many of the things you describe here as a child- in private, with a great sense of guilt I didn’t understand. I also purge my browser history after every online BIID ‘session’. I too am living a secret life alongside my ‘real’ one. Currently my real life is rather hectic, meaning my BIID is confined to a few moments I can grab alone, or in my dreams. Probably better for my mental health this way though….
Good Luck, our thoughts are with you too!!
Ana
x
8 On 10 March, 2009, Phil said:
Dear “Silent”,
I just came to read your text. Oh, I feel with you with every fiber of my heart.
You described so many of my own feelings and doubts so well.
And you have taken a big step. Last week there was a big international conference about BIID in Frankfurt, Germany. I took part. I went there, people saw me, I even said something in front of all these people. I met a lot of us.
We are normal. I have been tested, like many others. Following all psychological knowledge of the time, we are a perfectly normal group of people. But we have this strange desire.
It did me so good to have seen and spoken with all these people. Like coming out of the closet years ago as a gay man. I am slowly starting to integrate all of me into one person: myself.
And you have started, too. I wish you courage, power and patience on your way to yourself.
When I was a child, my mother had to repair my pants all the time. I used to kneel and move on my knees so much that the pants got holes in them. This was long before the time to which my memory goes back.
My partner knows about my BIID, and I am planning to tell some of my closest friends. (Alone the consideration whom I could tell shows me who my best friends are!) Before I told my partner, I spoke with my doctor about it and later with a therapist. Both did me very good. I can only recommend you to start talking to somebody about it who is by profession and by mission open and understanding. Maybe a therapist or counselor who is experienced with persons with GID (gender identity disorder, transsexualism).
With telling my partner, I got relief, and he got a huge weight on his soul. But it was necessary.
Don’t force it, but start with doing yourself good and getting some advice.
If you want, write me a private mail (or to the contact address at http://www.biid-dach.org) and we can talk on the phone. I am like you, no need to hide, no need to fear.
Be compassionate with yourself like you would be with a person whom you see suffer. That was one important and precious advice from my counselor. It is true. Do it.
Wow, thanks for sharing your story with us. Funny, I used to put layers of socks on me as well when I was a kid. I did it in secret and sometimes I used to sleep with them on under the covers. This is the first time I have ever heard of somebody else doing the same thing.
We are all in the same boat here. I don\\\’t know what I would have done if I didn\\\’t find other people with the same issues. It has really helped me feel connected to people in this world. I hope that you will have the same experience knowing that you are not alone.
Sam
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1 On 27 January, 2009, Claire said:
Wow. What a powerful and touching introduction. Welcome.