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Blog > Thoughts > Other's Thoughts > Ada's Thoughts > Choice and BIID – Varying Opinions

Choice and BIID – Varying Opinions

Written by Collective on Monday, April 13, 2009

The following post is a collection of entries on the topic of “BIID and Choice” from different people. Everyone was asked to write about that topic, but were not given more direction than that. I chose to leave it up to people to go in the direction they thought best fitted the topic. I am quite happy with the way it’s turned out and might repeat this experience with another topic. Sean

Entries

These entries were loaded in the post in no particular order. You can read through the entire post, or jump straight to a specific author.

• Sean
• Cath
• John
• Sophie
• Phil
• Anonymous
• Chloe
• Tom
• Anynymous

Sean

I did not chose to have Body Intergrity Identity Disorder. One no more choses BIID than one choses to have cancer. It may be something congenital, or it may be something that develops when you are a young child. We don’t really know. It may be something psychological, or it may be something neurological, or it may be something neuropsycological. We don’t really know. But whatever it is, we did not suddenly wake up one morning thinking "oh, I think it would be cool to be disabled, so I will now spend the rest of my life wishing for a physical impairment".

I think most people get that idea, that the fact we feel the way we do is not, and never was, a choice. I won’t belabor this point then :)

Where choice becomes a really tricky player with BIID is when one looks at what one can do about having BIID. You can chose to fight it. You can chose to try psychotherapy. You can chose to repress it. You can chose to ignore it. You can try pharmacotherapy. You can use a wheelchair, or crutches part time. You can use a wheelchair or crutches full time.

The Oxford English Dictionary defines choice as:

"The act of choosing; preferential determination between things proposed;"

In order to have a choice, you need more than one thing proposed, you need several options. Or at least two options. If you only have one option, you aren’t chosing to take it. The options also have to be known. If I am aware of Option A and Option B, but am unaware of Option C, I cannot chose between A, B, or C. I can only chose between A or B.

At which point does an option stop being an option? An undesirable option is still an option. Up to a point. If Option A is to jump naked in a pit of vipers, and Option B is to walk barefoot on gravel for twenty miles, do you really have a choice? The purist would say that you do have a choice. There are two possibilities: Vipers or Barefoot. I don’t really see frollicking with vipers as an option. But then, it all depends on the circumstances surrounding the choice, doesn’t it? If the story that goes with these two options is that you have eaten something poisonous that will kill you in 2 very painful and agonising hours, unless you get medical assistance, then perhaps jumping in with the snakes to get a quick death is better than knowing you can’t reach medical help before your death anyway. This is a rethorical game that can be played ad nauseum.

A dilemma involves choosing between two equally unattractive options. The key feature of a dilemma is that it describes a scenario where no matter what we choose to do, we are acting immorally. Or dilemna is a problem offering at least two solutions or possibilities, of which none are practically acceptable. In many ways, the situation we are in could be perceived as a dilemna. Living with the constant agony of BIID is not acceptable. Acquiring a physical impairment is also not particularly acceptable. So it’s a case of doomed if we do, doomed if we don’t. Stuck between a rock and a hard place. Going from the frying pan into the fire. Right, enough analogies Sean! That is, for many of us it *is* acceptable, but in the context of society, it is not.

The thing is, I personally don’t see these two options as both being unacceptable. I trully and profoundly believe that becoming a paraplegic is not such a negative. I am no fool, I know well enough that it is not all joy and glory. But I know better than to believe it is a bad fate. Whereas being constantly unhappy is most certainly not a palatable option.

I do not chose to be living in misery. I am on this path because there are no other available option. Psychotherapy and pharmacotherapy are not options, as they have proven (for me anyway) not to work. If the option of surgery was available, I could compare surgery against misery, and then be able to chose. I would *like* to have a choice. I would like to have the option of surgery available to me. Because until then, I have no choice.

Yet, even if surgery was an available option, I still don’t think I would have real choice. Because one of the two options is so unpallatable, so wearying. At first glance, yes, it’s a choice. Technically, it’s a choice. But a choice where one of the two options is so unbearable is not really a choice.

Cath

There is much talk in the news at the moment of Dignitas – an organisation in Switzerland (one of just a handful of countries in Europe where assisted suicide is not a crime), which, if you have a terminal illness and arrive there with appropriate medical reports to confirm it, will arrange and bring about your death by lethal prescription. It has recently transpired that they will also agree to do the same for non terminal conditions – specifically mental disorders and, in at least one case, a young man just a year after he was paralysed while playing rugby.

So BIID is possibly a mental disorder and possible a neurological one. Either way, I reckon I could make a case to Dr Minelli, the founder of Dignitas, to end my life, should I choose to. Simple. Get a copy of a letter from my psychiatrist to my GP in which my BIID is diagnosed, maybe along with my other ‘issues’, and bingo - a license to die painlessly at a time, if not at a place of my choosing (sorry – not keen on Switzerland – too many cuckoo clocks and chalets for my taste).

A bit drastic you might say and you’d be right, but I bet everyone here has been desperate enough to think about death as an option one time or another. And I bet you can guess where this is going.

If it is so easy to get an assisted suicide as a ‘life’ choice for someone who is ill or disabled, then what’s so abhorrent about the idea of us BIID sufferers being awarded the dignity of getting what we need in order to move on with the life we would choose and be free from the burden of our disorder? If a suicidal depressive or schizophrenic person (who in this country would be deemed to lack capacity during an acute episode) is permitted to end their life in this way, then why can’t a BIID sufferer get a simple spinal transection or amputation?

Why Not? Someone tell me why. Why should I be deprived of the choice for a life enhancing procedure, when other’s deemed equally ‘mad’ are permitted to die?

John

Kind of an ironic combination? Or maybe an outright oxymoron. I can’t imagine anyone choosing BIID. Therefore, for those of us who do have BIID, what choice do we have? This has a parallel in how some see gay folks; that is the claim that sexual orientation is a choice. While that is a common view here in the US it is absurd given that small to adolescent children can hardly be expected to understand the concept of sexual orientation much less choose one or the other. Likewise, when BIID developed in me, and probably in nearly all others with BIID, we didn’t understand that there even was such a thing as BIID. I just remember having a strong fascination with amputees and paraplegics and wanting, somehow, to be like them. I certainly did not even know enough about what I was feeling to have any choice in the matter. I was compelled by some aspect that I had inherited or somehow acquired to have these feelings. There was no choice.

As an adult with BIID do I have a choice? I cannot, no matter what, chose not to feel this way. It is part of me. And has been for a long time. The internet didn’t make me this way nor did any other material or person. However, the internet and the people that I have met on it have helped me cope by showing me that I am not alone. Again, there has been no choice in how I feel nor have these external things caused my BIID.

One might hope that a choice would exist to become the disabled person, a paraplegic, that my inner being draws me to like a moth to a flame. But how? This compulsion has led me to learn about the alleged options; there are none, really. When I read of others saying that they are willing to try "it" I get very concerned. The "it" being methods that I will not discuss but have looked at and know just how dangerous attempting such things can be to the person who makes the attempt. I don’t want to die even though I feel I must, somehow, become a paraplegic.

Now, that is different, I did make a choice. While this is not a choice to fulfill my inner need to be a paraplegic, there is at least a choice not to do something completely stupid and likely fatal.

What a choice! I have chosen to live with this rather than kill myself trying to become a paraplegic. Maybe there are other, safer, aspects of my BIID that I can have but I can’t have the big one. AND I have made a choice to not to try to have that.

All choices have consequences and that is the hard part. For the rest of my life, I will have to continue to learn to accept that choice and learn to live with myself. Even though that means I can not become what my inner self will constantly tell me that I need to be. Obviously, it isn’t the most pleasant of choices but somehow, someway, I can feel better about myself because I know that I can make at least one choice.

Sophie

I never chose to have BIID, in some ways BIID chose me.  It’s like some kind of damn homing pigeon who always finds me no matter how far away I try to run.

Until I was nineteen I chose to ignore my transabled feelings.  Growing up in a Christian home part of me thought it was morally wrong to want to be a paraplegic.  Instead I tried to channel my “interests” into socially more acceptable paths…like becoming a nurse…but ultimately that proved to be the wrong path for me to follow, which goes to show not all transabled people are suited to work in the medical field, we all have a variety of different strengths and weaknesses.

Then I genuinely became aware of my transabled feelings and I chose to act on them and become a full time wheeler.  Everything was right with the world and although I still wasn’t a paraplegic my mind could at least take a rest knowing I was halfway there.  Unfortunately choices lead me to the point where I’d screwed up financially and had to ask my parents to help me.  Some might argue I chose to move back home, and I definitely chose to try and “hide the crazy” as I told one of my best friends last night.

I never chose to have BIID, but I’ve chosen how I respond to it with my life choices and only one time out of four was my choice ultimately beneficial for me.  There’s the saying “In order to take care of others you first have to take care of yourself” and I know that becoming a full time wheeler doesn’t always help others, but it’s in my best interest.  Once again drawing from a conversation I had with a friend of mine last night “The thought of me living without being a wheelchair user is unthinkable.  Just like the thought of Jesus coming to earth then not dying on the cross is unthinkable.”  I know in my heart that no matter what choices I make in reaction to my BIID I’m always going to feel the same way.  It’s an intrinsic part of who I am and ultimately the only way for me to be cured (other than BIID) is if I was completely wiped clean of all thoughts and memories of being transabled.

Phil

BIID and choice. This is exactly what is on my mind for some weeks now. I am a bit (?) desperate. I see all those handsome men walking around naturally, elegantly, smoothly, at ease with themselves and their bodies, at home in their bodies, and I just only want to be and feel like they do. Oh, how I would be able to choose to forget about all this amputation stuff. Today is one of those days when I am happy to be able to walk and do things so easily and fast. An impairment makes life more complicated. I don’t want to complicate everything. I don’t want to be disabled.

But on the other hand, when I try to overcome my desire, I feel like I were only half alive.

It makes me sad to see that I don’t really have a choice. I feel trapped, hopeless.

For years and years I have been doing things to better settle in in all of my body. And I could – to some extent. My perception of myself and the world has become more intense and deeper. I can feel energies running through my body, and I can influence them. I can relax much better. And in a state of deep relaxation, all of my desires go away. But also all of my activity goes away. And when I start to do something again, BIID comes back most often, too.

I would pray for and love to have a choice. I feel I haven’t. And that is so hard.

The other aspect is that there is no choice because there is no surgeon and there is no successful other (psycho- or medication or whatever) therapy.

My patience is wearing off. I am crying often these days. Which I see as better than what I did before: I had suppressed it and split myself up into fantasies and reality. Now I slowly start to integrate my parts more and more. Oh how I would love to integrate my legs and be just me, being on the same wavelength of life with all of my body, my soul, my mind and the world, even cosmos.

I had no choice to become heterosexual. It was hard for me to accept this. But when I found gay love, it didn’t matter anymore and I was so glad and felt so right.

Is BIID like being gay — or is there a choice? If I only knew!

So I don’t have an answer, only open questions. And I try to do what Rainer Maria Rilke suggested: You have to learn to love the questions themselves. It is not easy.

Anonymous Entry

I want to respond to this, but I don’t know how I categorize myself and I feel I have to establish my bona fides before I can respond validly.

Where does all of this put me?

When I was about five or six, I saw a little girl in polio-style braces, steel and white leather, and in that moment, I knew that I should be that little girl. I desperately wanted to be that little girl.

Because my mother had a slight disability and was embarrassed by it, I felt this was nothing I could talk to her or anyone about. There’s no doubt I would have gotten a lecture on how hard being disabled was for my mother.

I spent a lot of time around hospitals. Our family friends included several people with physical disabilities, including one man who had broken his neck and recovered. Seeing people in wheelchairs or braces was a natural thing for me.

Then we got a set of medical books and I found pictures of a little boy in braces, including a pelvic band. I stared at that picture for hours. That was what I wanted.

I remember sneaking into the living room to watch the TV series “Peyton Place” because one of the male characters was paraplegic. When I played, I made braces for my dolls. I fashioned them for myself using broomsticks and my mother’s scarves, but I also made sure my mother never saw me.

Somehow, I pushed down the desire to need braces, although I had several very clear, very realistic dreams about it. When I woke from them, I felt bewildered, but mostly, I felt empty.

When I learned about BIID, when I learned that there are communities of people who wear braces, my old yearnings returned and I felt very conflicted. Did I save the thousands of dollars necessary to have the KAFOs made for me that I felt I needed? Or did I go back to pushing down this desire?

I’m caught in some kind of limbo now.

Due to problems with my ankles and feet, I’ve acquired crutches and other bits of paraphernalia. Oddly, I will not use them. I have a legitimate need sometimes for these things, but I refuse to go into public with them. The distances I travel in my house are so small that crutches seem superfluous. I can stand the discomfort of walking a couple of yards.

I suppose it’s my choice to be in this limbo. If I wanted, I could donate the crutches to Goodwill and once more, push back any thoughts of wheelchairs and long leg braces. If I wanted, I am now in a position where I could go into public on crutches and no one would think anything of it. Yet even as I write that, I think, I want to be seen the way I want to be – as a woman who needs bracing to walk. As a woman who has long leg braces and must use them to walk.

Somehow, my thinking runs along the line of, if I can’t have it all, better not to have any of it.

I was fortunate enough to find someone with braces that nearly fit me. Although my time in them felt rushed, I knew it was the feeling I wanted.

I know my temperament well enough to know that I could easily become consumed by the desire to acquire KAFOs. Instead, I push the desire down or when it comes roaring back to life, I write my way out of it – or at least get it to a manageable level.

For some reason, I won’t own up to having BIID. I don’t think I do. If I did, how could I control my reaction to it as I do? I ache for the stories I read on transabled. I’m grateful that my pain does not take that route. I don’t want to have BIID. Therefore, I don’t.

Chloe

The first level of choice is the choice between having BIID and not having BIID. I don’t recall anyone positing this as an actual choice. What would it mean to choose to have BIID? Wouldn’t that be a Factitious Disorder? “The essential feature of Factitious Disorder is the intentional production of physical or psychological signs or symptoms” (DSM-IV). Since BIID necessarily has psychological sequelae, there could be such a thing as Factitious BIID. Are there any people posting on this website who are pretending to have BIID? Quite possibly. Then there’s the question of whether people who have Factitious Disorder have a choice about it. It is itself a psychological disorder after all. If you had a choice about it, wouldn’t it be “Factitious Factitious Disorder”? Maybe that exists too; but I see philosophical quagmires ahead.

On the other hand I think some of us have attempted to choose not having BIID. How is that working out for you?

The next level of choice is the manifestation of BIID. As Claire has pointed out, it is not likely that we are born with a need for multiple sclerosis, or paraplegia, or polio per se. We have no knowledge about such things until we learn about them. We just know that our legs are not supposed to work, or be there, or whatever. So it seems there is an element of choice in the manifestation. We latch on to whatever actual disease, injury, or physical condition most closely matches our body image.

I knew that my legs were not supposed to work before I knew they were not supposed to feel. I don’t recall the desire for lack of feeling until after I started bandaging my legs so tight that my feet went numb (I’m not recommending this). Much later, this aspect was massively confirmed. Experiences of local anaesthesia in my genitalia felt (didn’t feel) absolutely wonderful. I totally know this is the way it’s supposed to be. Likewise, when I acquired sensory loss in my thigh it felt (didn’t feel) just right. Paraplegia is simply the closest real life condition to my body image, and so I choose that word to describe my manifestation.

Finally there are the choices regarding what to do about this. How are we going to deal with it psychologically? What physical things can we do that provide some relief? Who are we going to tell? Are we going to attempt self injury. How best can we help others in a similar situation? These are all difficult and complex choices. For me, a great value of transabled.org is that the sharing of experiences can help guide us through this jungle. Reading about the choices that other people make does in fact influence what I choose to do. Thank you all for sharing your experiences.

Tom

Do I have a choice, and what are the terms? My past and current terms are either to indulge into letting the image of myself as an amputee take over (and to act it out) or to voluntarily fight it and behave "normal". There has always been a back and forth movement between these two alternatives in my life. However, the general tendency has shifted over the years from choosing to "behave normal" most of the time to a pressing "it is there anyway, I can’t deny it, so why do I continue to fight it"?

Furthermore, the whole picture is not just that simple anyway. To be honest, when I am in a BIID period (with a lot of pretending), I feel I’ll have to choose to go back to normal at some point (but this has gotten increasingly difficult to accept over the years). When I am in a normal period, when the BIID doesn’t interfere too much in my life, my work and my interactions with people, there will be a point when I’ll want the BIID to be in the picture as well. There is absolutely no doubt about it.

Do I have a choice? A real choice would be not to have to go back and forth between the two alternatives, wouldn’t it? Why can’t I just choose to like myself for what I am? Why do I have to go by this duality? I know I can’t just decide to ignore my transabled feelings for I have tried that very hard and for a very long time, and it simply doesn’t work. Hence, there is just one alternative left: accept it. Yeah. Sure. Thanks for the advice, mate. See you sometime, ok?

No. Let’s rewind this and play it again. I have done all that could reasonably be done – and even a little more – to live a normal life, fighting back the amputation desire and favouring positive activities and achievements. But the desire never went away. It *is* part of me, and it’s not a somewhat minor part. Fighting it means fighting against myself and not allowing myself to live fully. Fighting it means exerting constant control over myself. This is exhausting. This is damageable. This is painful. This is not satisfactory at all. So, why not go the other way, and pretend full time, or even acquire the necessary disability?

The dichotomy is ripping us apart… Is there a choice? The only genuine choice I have is to become, at last, a *real* one handed guy — or not to do it, which is what I chose so far, especially on the many occasions when I was on the verge of doing it, when I could no longer live by the dichotomy. Or else, get drunk, or take sedative pills, or bang my head against the walls… all of which I’ve tried out many, many times, but all of these practices only last so long, and sooner or later I’m back where I was before.

So what?

Either I take the big step and acquire the disability, or I carry on with the dichotomy. And I don’t really have a choice, do I? … In the absence of any form of support towards the first of these two terms.

Anonymous

I recently told my boyfriend. He accepts I have BIID. But he thinks I should not act on my impulses. He tells me that it is not my fault I have BIID, but I have to be strong willed and ignore my needs. My mother used to tell me the same thing when I came out about being gay. She preached abstinence. She told me it was a test from God. She told me to endure, and show my true character by attending Church regularly and finding a good woman and raising children. I chose not to be a martyr because of my orientation. My boyfriend should understand that. I want to choose not to be a martyr because of my BIID. I want to choose to be happy.

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