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Body Image and the Brain

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Written by Claire on Tuesday, March 20, 2007

I was conversing recently with another para wannabe and I realized something about my desire to be a paraplegic. What I find intersting with my own desire is that I don’t think, actually, what an SCI is truly what I want because my image of myself has always been simply of my legs not working. I still have abs, I still have lower back, it’s just the limbs themselves that shouldn’t work properly. It starts at hip-level. You might say that I’m just idealizing paraplegia, and you might have a point, except that I have talked to people with BIID who desire to be vent-dependent quads! My BIID is at a certain level, and always has been, and someone else’s may be higher (quad) or lower (just one foot).

I have always said I desired an SCI because that’s the only way I know to acheive the way my legs are supposed to be, but I don’t think that’s really it, unless it’s a very low, incomplete injury. I also have a hard time imagining them as numb, with no feeling. I can feel them, they’re just not supposed to move. They’re supposed to be limp, and atrophied, and paralyzed, but I can feel them. Like Polio, maybe? I don’t think it’s a specific injury or a specific disease that I want, it’s a specific form that my body should be in, and how I arrive there is irrelevant.

Dr. V.S. Ramachandran is one of the preeminent neuroscientists in the world today, and is currently conducting a study of BIID at UCSD. He is looking at BIID from a neurological point of view; basically that the part of the brain that processes body image is disfunctional. So, putting it in very (overly) simple terms, your brain’s map of your body says that you have no left leg, except that you can actually feel and see and move a left leg that your brain doesn’t recognize. This would explain why psychiatry has so little success treating BIID. It’s a hard-wiring of the brain. It makes a great deal of sense to me.

There is a Multiple Sclerosis wannabe who has a very interesting blog, and I have heard of Polio wannabes. But I don’t buy that they actually want a specific disease. If BIID is neurological, there’s no connection in your brain that can say "I’m supposed to have MS" (or some other specific disease), unlike an amputee wannabe or a para wannabe where you can say, the brain’s map of the body is wrong, there’s a part there that’s not supposed to be there (like the exact opposite of an amputee’s phantom limb). I think that their brain is wired a certain way to tell them the level of functionality that they should have, and MS or Polio (or whatever) is the closest thing that they can think of to make that happen.

[tags]BIID, Brain, Transabled, Transability, Ramachandran, Body Image[/tags]
 

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8 Comments

1 On 22 March, 2007, steel legs said:

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After ‘growing up’ and seeing many people in the 1960′s with leg braces..I became infatuated with the idea of having ‘polio’! As a child.. I really wanted to wear leg braces..and spent a lot of time divising ways to make ‘home made braces’ which gave me great sexual enjoyment..when I put them on !
I was 9-10 years old when I devised my first set of braces! As I got older..I never grew out of doing this..(Stuck in my development perhaps?)
Also-Whenever I saw someone in school wearing braces..it would drive me mad with jealously ..I would go home’after school’ and strap myself up and masturabte in my room?
‘Strange’ the idea that anyone with ‘polio’ suffered..never seemed to enter my mind ? I kept this desire a secret..because if anyone knew that I wanted to have ‘polio’ I would be branded as some kind of ‘sicko’
No one ever seems to talk about the sexual element in the desire to be paralyzed and wearing leg braces all day long? So I wonder..am I the only one who is hooked into all this because ‘needing to wear leg braces’is connected to experiancing sexual plerasure ?
At some point ..I begin to realize that if I actually ful-fill my sexual fantasy and become paralyzed..I most likely won’t be able to have sex anymore ! So..’paralyzing myself like this doesn’t make sense ..?It makes no sense to want something that actually dammages ones ablity to enjoy sex ..as this is what drives my need to wear leg braces all the time is about in the first place!
I realize we are all differant..no one is the same .
So I ask..why then do some people pursue the idea of self-injury..if what they desire will most likely harm thier ablity to enjoy sex ?It makes no sense to me..to paralyze myself and then become unable to take care of myself anymore ! I don’t hate my body this way..I have relatively good health..I enjoy living..why do something that endangers this ?
Eventually ..being in this Merry go round of self-destructive thinking..makes one pretty crazy !(Speaking from my past experiance )
I can’t imagine anyone wanting to be a quad,unable to piss of shit ? This is a horribe way to live..
Anyway..I am not passing judgement on others..I am just commenting ..as this is a way of understanding my own problems.
So I ask.. Why not try and just settle down and accept whats going on.. and learn to live with 2 completly opposite ways of thinking ..inside one personality?
Eventually ..some people go crazy experiancing this..and find some way to injure themselves(to appease thier deep needs)..while others learn to seperate fact from fiction ..and can enjoy ‘pretending’ as a compromise ?
I enjoy ‘pretending’ yet deep inside I ‘imagine’ ? I would be happier if I was ‘paralyzed’ in some sort of limited way..so I would really need to have to wear leg braces..yet not to the point of being dependant on anyone one else ..I still want to be able to enjoy sex !
Most of my sexualality these days ..revolves around braces..
Polio seemed the most convient way to get there..all that leather and stainless steel strapped to your legs ..the locking of ones legs..the metal stirrups ..the ‘looks’ you get from others when they see your braces ..Yeah its all good !
I feel there has to be a limit to how far you want to carry on with all this..otherwize you end up insane or dead ?
Of course this is a subjective commentary..as some are very happy once they are paralyzed .

 

2 On 23 March, 2007, Claire said:

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You\’re not the only one for whom the desire for impairment is linked to sexual pleasure, because I\’ve talked to others. But the majority of transabled individuals I\’ve talked to or read about don\’t have that element. The desire for impairment is a question of body image and not sexuality. We don\’t get sexually aroused by the equipment, or the pretending, or the looks that we get from others. That stuff doesn\’t sexually arouse us, it gives us relief from mental distress.

That makes me wonder if perhaps we are talking about two different disorders, here. One, a paraphilia ( http://en.wikipedia.org/wiki/Paraphilia ), and the other, an identity disorder (BIID). What you are describing certainly seems to fit the definition of a paraphilia. But my BIID does not at all fit into that category.

It pains me to say it, because I hate splitting the different manifestations of the desire for impairment into separate groups. Amputee wannabes suggest that the desire for paraplegia isn\’t BIID, and I hate that! But here I am suggesting that being sexually aroused by the desire for impairment isn\’t BIID. The more we are fractured into separate groups, the more we marginalize a condition that is already marginal, and the less likely we ALL are to get help. Perhaps all these things are merely different manifestations of the same underlying problem, and it really all is BIID.

 

3 On 26 August, 2008, Roger said:

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Dear Claire,

Actually I am coming around to the wrongly “hard wired” brain hypothesis too: it fits better than any other explanation in my view. Like you, I want a lower limb impairment – something like the paralysis commonly found with polio but do not really want to lose full sensation. My brain tells me I should have had (something like) polio as a child and have had my left leg (specifically left or possibly both legs, but not right leg only) in a leg-brace since I was a child. Incidentally I broke my left leg as an 8 yr old child which was about the time I was first aware of my desire/drive.

What I am unclear about is how my brain got to be “hard wired” this way in the first place – did some trauma cause it? Has it always been this way and something “awakened” the desire in childhood?

And, of course, could the hard wiring be rewired by some sort of treatment as is sometimes possible in stroke patients?

Regards
Roger

 

4 On 26 August, 2008, Chloe said:

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Roger and Claire, I also have gradually come around to the “hard wired” hypothesis. I used to think that I got this way from childhood experiences. Then I thought I might have been born with a predisposition that got triggered through childhood experiences. Now the only thing that makes sense to me is just that I was born this way. I agree, Claire, “this way” does not mean a specific disease or specific injury. I think I settled on SCI specifically because of childhood experiences, and figuring out what the possibilities were.

Like Roger, it is much more important to me that my left leg doesn’t work than my right. Right leg alone will definitely not do the trick. There is nothing I can remember from my childhood that would give preference to a particular leg. I think that is hard wired too.

 

5 On 26 August, 2008, Brice said:

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From the time I came to know that there are others like me, and thereby was able to settle my panic about my crazy self and reflect on my experience, I have never doubted that my BIID is hardwired. As far back as I can remember, I have needed legs too weak to sustain walking, requiring the use of crutches. I deeply resented kids with polio, perthes, cp, etc. who had acheived what my mind told me was right for me. In my childhood it never occurred to me that their condition might be a problem to them.

 

6 On 26 August, 2008, Brice said:

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Growing up when and where I did, I had lots of visual contact but no personal interaction with the mibility impaired kids whose ranks I so desperately longed to join. It was pretty much all crutches, braces and buildups, people who had to use the clunky wheelchairs of that time were mostly confined to their homes, very little accessibility for them, while those on their feet did heroic feats of getting around.

 

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About Claire

I am a wife and mother who has had BIID all my life. Since my earliest memories I have had a deep desire to be a paraplegic. For over 30 years I kept this a closely held secret until one day I just could not take it anymore. Now, I am telling all of you my story, because I know that somewhere there is another wife and mother who is confused about her strange desires and needs to know she is not alone. follow me on Twitter