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Vestibular Caloric Stimulation
Written by Claire on Saturday, June 23, 2007
A few weeks ago I had the pleasure of meeting Paul McGeoch at the Center for Brain and Cognition at the University of California, San Diego. I was told that I am the first and only person to take part in their new study on BIID.
As those of you who have been following fighting_it and the other Yahoo groups for BIID know, Paul is working with noted neurologist VS Ramachandran on a study of BIID. Here is the abstract, below.
"Apotemnophilia, or body integrity image disorder (BIID), is characterised by a feeling of mismatch between the internal feeling of how one’s body should be and the physical reality of how it actually is. Patients with this condition have an often overwhelming desire for an amputation- of a specific limb at a specific level. Such patients are not psychotic or delusional, however, they do express an inexplicable emotional abhorrence to the limb they wish removed. It is also known that such patients show a left-sided preponderance for their desired amputation. Often they take drastic action to be rid of the offending limb. Given the left-sided bias, emotional rejection and specificity of desired amputation, we suggest that there are clear similarities to be drawn between BIID and somatoparaphrenia. In this rare condition, which follows a right parietal stroke, the patient rejects (usually) his left arm as "alien". We go on to hypothesis that a dysfunction of the right parietal lobe is also the cause of BIID. We suggest that this leads to an uncoupling of the construct of one’s body image in the right parietal lobe from how one’s body physically is. This hypothesis would be amenable to testing by response to cold-water vestibular caloric stimulation, which is known to temporarily treat somatoparaphrenia. It could also be investigated using functional brain imaging and skin conductance response. If correct our hypothesis not only suggests why BIID arises, but also, in caloric stimulation a therapeutic avenue for this chronic and essentially untreatable condition."
The full version of this paper can be found in the "Files" section of the fighting_it group at Yahoo (if you are not a member of the group, you will have to join and then you will be able to access the document).
"As the English biologist Peter Medawar has noted, ‘An imaginative conception of what might be true is the starting point of all great discoveries in science.’ Ironically, this is sometimes true even when the speculation turns out to be wrong. Listen to Charles Darwin: ‘False facts are highly injurious to the progress of science for the often endure long; but false hypotheses do little harm; as everyone takes a salutary pleasure in proving their falseness; and when this is done, one path toward error is closed and the road to truth is often at the same time opened.’" — V.S. Ramachandran, Phantoms in the Brain
When Paul first posted an introduction and invitation to their study on BIID, there was widespread skepticism about whether shooting some water in your ear can "cure" BIID. However, I think the vast majority of detractors failed to see the point. The point was that this is a starting point. This is one of the first serious studies ever done on BIID at all, and the first to look at it from a neurological standpoint. No one ever said "this is gonna work." They called it a hypothesis that could pinpoint the origin of BIID. It made some sense. Somatoparaphrenia does exist, it is very similar to BIID, and does respond to shooting water in your ear. It’s worth looking into. And if it didn’t work, well, then knowing that it doesn’t work closes one path toward error and we are one step closer to a solution. That’s also worth doing.
With that in mind, I offered to take part in the study while on a trip to Southern California to visit a friend. I emailed Paul McGeoch and he was very pleasant, accepting with alacrity even though I confessed that I was not your typical BIID sufferer in that I don’t want an amputation. He provided me with good information on the study including an outline of what would take place and a preview of the ubiquitous consent form that I would have to sign.
Center for Brain and Cognition
When I arrived at UCSD, quite late due to having mis-judged the driving time to La Jolla and then getting lost on the UCSD campus, Paul came out to the parking lot to meet me and direct me to the Center for Brain and Cognition. He was friendly and personable. I was using my chair, told him why (getting my "fix" while in California), and he didn’t seem to care much either way.
I was directed to a small room that featured a desk and a couch. Paul asked me if I had any objection to two students listening in on the interview, and told me that it was fine if I would rather not. I was quite happy to have two young students to educate about the reality of BIID. The students were told that it was OK to enter and they came and sat down on the couch next to Paul, with me facing them in my wheelchair. Two pretty fresh-faced girls.
We then started the interview. Paul asked for my first name only, and I gave it to him, but explaining that I didn’t want my name appearing ANYWHERE publicly. He assured me that it was all confidential. He wrote down my first name, and then asked me a lot of questions about BIID, such as what did it feel like, how long had I had it, how did I deal with it, how strong was my desire to be a para on a scale of 1 to 10, at the moment. He and the students asked some really good questions, things I hadn’t thought of before.
I was also given a full neurological exam, and my ears were examined as well. Damage in my ears would rule me out for the VCS treatment, but they were fine.
I was asked if I would mind undergoing a skin conductance response test, which consisted of placing some electrodes in various places on my body.
That was fine with me, and before we went down I was given a consent form to sign. Paul had sent me a copy of the consent form months before I ever went to see him, so I was prepared for this and signed. There, they got my full name. So be it. After meeting them, I have every confidence that my privacy will be protected.
Paul told me that they were testing my emotional response to different areas of my body, and did tests above and below the "line" where I feel I should be paralyzed. This was a stress-free, non-invasive procedure. A little more about this test can be read here.
When this was done we went back to the little room with the couch and talked some more, and Paul went to find Ramachandran. Ramachandran came in and repeated many of the questions Paul had already asked me, but also some new ones. He was brisk and businesslike. He asked if he could do some tests with some mirrors, to gauge my emotional response. That was also fine; I had read about some of the work he did with mirrors in one of his books. It was quite simple, he held up a mirror at the correct height so that I saw my upper body with no legs, and asked me what I thought of the view of myself with no legs as compared to the image of my whole body. At first it didn’t bother me, but when he put it that way, that in one image I had no legs, I was able to see it that way and it felt uncomfortable. I didn’t at all like the view of myself with no legs, I felt disembodied. I much preferred to see myself sitting in my wheelchair, my legs still with loose pants, my feet resting on the foot plate. Ramachandran seemed surprised at this, no doubt thinking of the usual BIID sufferer who desires amputation, but I explained that I liked the whole-body view better because when sitting in my wheelchair, then my legs look more like they are actually paralyzed. I didn’t like being made to look like a DAK, I liked better the view of me as a para. He then held a mirror in my lap so that if I looked down at it, I saw not my lower body but my upper body looking back at me. He asked how that felt, and I didn’t like that feeling much either as it made me feel like I were a conjoined twin with no lower body.
They then asked me if I could come back the next day for the Vestibular Caloric Stimulation. I agreed. I was surprised and unprepared for a second day at UCSD, but I had the time, and I think it was probably because I had been late in the first place that they didn’t have the time to do everything they had wanted to do.
I showed up the next afternoon, and was asked to do another skin conductance response test. We did that, and then I was taken back to the little room with the couch, where I was asked to rate my desire to be a paraplegic on a scale of 1 to 10. I gave it a 6.5 at the moment. Next Paul directed me to lie down on my back on the couch, remove my shoes, and prop my head up on a pillow. For the Vestibular Caloric Stimulation, Paul filled a large syringe that was fitted with a small, flexible tube at the end, with water. He explained that I could feel dizzy or nauseous and that I could ask him to stop the treatment at any time. He held up a kidney-shaped dish to my ear to catch the water, and inserted the flexible tube deep into my ear. This was a bit uncomfortable. My ear was irrigated with water in a gentle but steady stream. This was done three times, and the second and third times made me very dizzy. Looking up at the ceiling I could actually see the room spinning around me, a very strange and disconcerting sensation. The second time I had to ask Paul to stop because it was freaking me out. He asked me if he could keep going for 15 to 20 seconds, but I said no, so he stopped, and I sat up, which made me feel nauseous. Paul suggested I get up and walk around a bit, which made me feel better. As soon as I sat in my chair, if it moved at all, it made me sicker, so I opted to continue walking most of the time. Once I was a bit recovered, Paul asked me to sit down and he asked me some questions, such as rating my desire to be a paraplegic on a scale of 1 to 10. I gave it a 3 or 4, although to be honest it was hard to concentrate on that when I was feeling so sick and dizzy. We waited a bit more for me to recover and then we did the third treatment. I resolved that no matter how I felt, I wasn’t going to tell Paul to stop before he was done. We did it again, and I had the same reaction as the second treatment: intense dizziness, the feeling of the room spinning around me as well as the visual effect of that, nausea. I sat up and almost immediately threw up into the garbage can! Paul left the room and returned with some water for me to drink and a couple of paper towels and then told me to relax for a while. I found I had to walk around in order to get a handle on the dizziness. Rolling in the wheelchair made me sick. Asked to rate my desire to be a paraplegic, I again gave it a 3 or 4 (not sure exactly which, at this point). I felt the desire to be more when I was sitting in my chair, and less when I was walking around, which was a bit odd and contradictory to my usual feelings about it.
UCSD
We were done, and Paul said that I could leave as soon as I felt well enough. He thanked me for coming to see them, and asked me to keep in touch and tell him how I felt over the next few days (Paul told me once that VCS for somatoparaphrenia is effective for about 24 hours). I agreed. Before I left, he presented me with a copy of Phantoms in the Brain.
It took me a while to feel well enough to drive, but finally I did leave. A few minutes down the road, however, I realized that I could NOT in fact drive, so I stopped at the next hotel and spent the night there. The dizziness came and went the rest of the day until I went to bed. That night I had one of the best nights’ sleep I’ve ever had, as I am a light sleeper who never gets more than 6.5 hours sleep – that night, I got 9.5, nearly unheard of in my life! The next morning I still felt slightly dizzy, but it wasn’t especially bothersome.
An interesting thing is that for most of the morning I had an aversion to the wheelchair. For the first time in living memory I preferred to walk rather than wheel. I did wheel a bit, and it didn’t make me any dizzier at this point then I was when walking, so I don’t believe it was because of the dizziness. I had to wheel in the hotel because I had arrived in my chair, so I felt I had better depart in it. It also has a very low back making it difficult to push in front of you when walking, so it’s just easier to sit in it and wheel it.
I spent the rest of that day at an amusement park with a friend from California, and used my chair. I didn’t particularly want to use the chair, but visiting an amusement park in a wheelchair was a lifelong dream of mine, and I felt like I’d be missing out on an opportunity if I didn’t. I wheeled all day, and had a great time, but something was missing. I never once felt that deep pleasure and relief that wheeling usually gives me. And I never once felt that deep longing to be paralyzed. I would have been just as happy walking.
The next day, I pretty much returned to normal regarding my chair and feelings about being paralyzed. Highs and lows. However, I have found since then that my overall desire to be actually paralyzed has been less, while feeling just as strongly about my need to use a wheelchair. Emotionally, I feel more focussed on wheelchair use and less on having paralyzed legs. Oh, the desire still hits me, but I haven’t had many really bad moments.
I cannot say if VCS had anything to do with my unusual feelings the day after the treatment or not. I was always sceptical about it. I stated publicly on the fighting_it list that I was doing this to further the research, and support those who are interested in studying BIID, and not because I hoped for a miracle cure. And as for the overall desire being lessened…who knows? BIID always had its highs and lows for me. Did the VCS prompt a "low" phase? Or would it have happened anyway? Will it come back? I don’t know.
What I can say for sure though is that something happened, so I’m unable to categorically state that it did nothing. It possibly did do something. The 24 hours following the treatment were definitely odd. I feel that it’s worth more research. I would go and do it again, to see if I can repeat the experience, and I strongly encourage others to go as well. None of these quesions –which are well worth answering, if you have BIID — will be answered if I’m the only person ever to care enough to take part in such things. Only with much more data from many other transabled people will a picture begin to emerge.
I can hear some of you saying, "Well if it only works for 24 hours, what’s the point?" The point is if they can determine that it does work for 24 hours or so, they will have pinpointed the area in the brain where this occurs. That’s a huge step forward.
And for those "surgery or nothing" people, pinpointing the area in the brain where it occurs does not necessarily mean that surgery will never be an accepted treatment for BIID. I think it could actually speed you on your way. But that is most likely another discussion.
If you want to know more about the study, use the contact form to get in touch with me and I’ll send you the data. Or, contact the Center for Brain and Cognition directly through their website.
If you’ve ever complained about the lack of treatment options available to transabled people, then you’ve got a duty to get involved in making it happen. (Please no comments about how you can’t because you live in Uzbekistan and can’t afford the plane ticket! There are those of you who do live nearby or who can get to California. I did, from across the continent.)
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30 Comments
Your account is fascinating and I wish you the best of luck and the best possible outcome. It is nice to see a study of BIID coming from an angle other than the old ‘paraphilia’ hypothesis. I do have a couple critical comments (on the study, not your account):
As with nearly all studies on BIID, the sample size is very small. Too small to make meaningful conclusions on efficacy. In this case it is the fault of the rest of us who might participate and don’t (like me).
Self-reporting in a study like this carries the risk that there will be a bias towards a positive outcome. No way around that, it is the nature of the beast.
Claire, as with all of your accounts of your struggle with being transabled, this is clear, well thought out and almost thrilling to read.
3 On 23 June, 2007, Marie said:
Sounds like nothing more than Aversion therapy. VCS is used a diagnostic for Ménière’s Syndrome (a vestibular disorder which also has a hearing loss component) and it is known to cause intense dizziness. I had a feeling that it’d be some kind of aversion therapy. Is aversion therapy therapy at all? What’s next? Electrocution when you sit in your chair or read BIID websites and mail lists?
Hmmm interesting.
I may not be the sharpest tool in the box, (and i may be about to prove it) but it does sounds like some form of aversion therapy.
Surely injecting fluid into the inner ear will cause a widespread imbalence within your body, and its an unpleasent experience, coupled with the questions being asked, an association is being made in your subconcious i.e thinking/talking about being paralyzed = bad sickly feeling, me no like, me no do it.
It’s a bit like Pavlovs dog in reverse, when the dog presses the button a buzzer sounds and it gets fed, so the dog gets happy when it presses the button and hears the buzzer coz it knows something good’s gonna happen. If you were to hit the dog with a baseball bat each time the button was pressed, it wouldnt be such a happy dog, and you can bet your bottom dollar it would soon learn not to press the button
I really don’t wanna rain on your parade Claire, but this does sound like a form of brain washing to me. Having said that it’s probably me not fully understanding the whole proceedure. I have to admit i bearly understood a word of the intial abstract by the two doctors. And ultimately, if it’s worked or even just helped you, and you feel you’re beginning to find peace in your mind, then who am i to knock it. Best of luck
(BTW i DO live in Uzbekistan(almost) and i REALLY cant afford the plane ticket).
Will
5 On 23 June, 2007, Robin said:
Just for clarification Will, VCS is not injecting water into the *inner* ear, but the outer ear against the eardrum.
NO i wasnt responding to Marie’s post, we must have been replying at the same time but she must have hit the submit button just a sec or two before me.
I only know about the imbalence thing from my youth going to the swimming pool. I always got water trapped in my ear whenever i went, in time this would seep into the inner ear and when it did i could bearly stand up. Which probably explains why i aint been to the swimming baths for over 20 years :)
Will
7 On 23 June, 2007, Claire said:
Well, one thing is that I’m not a really good candidate for a study on BIID. My symptoms come and go, and always have. The whole thing is often vague and cloudy for me, going in and out of focus. A much better candidate would be someone desiring a specific impairment that’s easily classified and more clear-cut (ie. amputation of left leg exactly 4 inches above knee) who has had this strong desire all of their lives.
As for the suggestion that it’s aversion therapy, while the procedure was indeed unpleasant, that really is not the point with VCS. If you google this (which I did before participating) you can find out that the procedure actually stimulates certain areas of the brain that, among other things, process body image. They’ve done studies with VCS on phantom pain, asomatognosia (google that one!), somatoparaphrenia as already mentioned, and more. Brain imaging scans clearly show this. There is enough research on VCS available on the Internet to make it obvious to even laypeople like ourselves that it is more complex than “aversion therapy”.
And there is no parade to rain on. I just participated in the study in order to promote BIID research, and I’m not cured, and didn’t hope or expect to be. I knew *well* beforehand that VCS on people with somatoparaphrenia is only effective for 24 hours. More people are needed in order to find out more about BIID, and *then* when we know more, perhaps a treatment can be developed or they’ll finally break down and do surgery on us. I did it in the interest of knowledge, not in the hopes of fiding a cure.
Ok point taken, and i certainly dont want to get into an argument about what VCS is or isnt. Clearly you’ve researched the subject and understand it far better than i.
But, lets face it if you stimulate any area of the body its gonna have some sort of impact on certain and specific parts of the brain, i.e Pavlovs dog, the areas of the brain that control “feeding time” were stimulated which inturn triggered certain physical manifestations eg its mouth began to water and its heart rate increased as it got excited (but its been over 20yrs since i studied this so i’m certainly no expert)The point is, with this experiment they could control the dogs emotional and to an extent physical state with external stimuli. Which to my way of thinking is mind control. Maybe harmless with a pet dog, or maybe even benefical if the dog is violent and aggressive. But do we really want to go down this path with humans ? Not so many years ago they used to perform frontal labotamies on dangerous and violent psychiatric patients, so why not do the same with BIID sufferers or transgender folk, maybe extreme but when you think an icecream is the neatest thing you’ve ever seen in your life its a fair bet you wont be thinking about wanting to be a paraplegic or amputee. (hope you see the humour here)
Therefore i wholeheartedly agree that more research is needed on BIID and as you say more people need to stand up and be counted and put themselves forward for examination. However i gotta say this, i’ve been floating around this dev/pretender/wannbe internet scene for maybe 11 or 12 years now, and at times there have been plenty of willing volunteers, but theres never really been any great cooperation from the medical profession. Yeah its good that theres a couple of guys in California willing to step out of their comfort zone and look into this, and if they’re willing to pay for my flight from Uzbekistan i’ll be there. And yeah there are a few documentary makers interested in bring this to the publics attention(which may or may not be a good thing). But, a handful of people with very little influence and even less money aint gonna change anything. Yes, you can say “at least i’m doing something about it” But to what ends, to find a cure and have these desires zapped from our brains ?, or change medical ethics so it becomes acceptable to have an operation to attain the disabilty we want. ?
Sometimes i think we should look at the bigger picture of exactly what it is we want. For so many reasons i think it would actually be wrong for this “operation” to become a recognized and acceptable medical practice. I think we have to see what kind of an impact it would have on the disabled community, and also society in general. I’ll give you a recent example that was reported in the local paper from my home town. A disabled bloke was in the city centre when his electric wheelchair broke down, he asked for help from passersby, yet everyone ignored him, bad, yeah, but the poor chap was there for 8hrs before a bunch of teenagers eventually came to his rescue, and whats worse because he was there so long we had wet himself, not nice eh ! If that can happen to a genuinely disabled bloke, whats gonna happen if people know there maybe a chance the guy paid to be disabled. Dont we run the risk of society thinking “Why should i help, he wanted this let him sort it out himself”. Its not something thats going to endear us to the disabled community
Let me ask, do you really think we would be wholeheartedly accepted into the incumbant disabled community ? I would’nt want to have to make up stories about having an accident or something to try to “fake” a genuine disabilty just to be accepted into MY community.
I think i better stop here coz this turned out to be a much bigger reply than i had expected. Maybe i’ll start a thread and go into the issues mentioned above in more detail.
9 On 23 June, 2007, Claire said:
But to what ends, to find a cure and have these desires zapped from our brains ?, or change medical ethics so it becomes acceptable to have an operation to attain the disabilty we want. ?
My answer to that would be…both. For some people, surgery is not the answer. For others, it is. So, if the desire can be zapped from our brains, then that form of treatment should be available to those who want it. For others, surgery is the answer. And I firmly believe that a good understanding of just what BIID is and where it originates is going to get us closer to that goal than if it remains shrouded in mystery.
Let me ask, do you really think we would be wholeheartedly accepted into the incumbant disabled community ?
Nope, regardless of what happens in the areas of BIID treatment, we will never be “one of them”. Never said we would be. But we can’t be denied treatment because the disabled community mistrusts us! BIID *is* a real disability, it’s a mental disability, and we deserve treatment as much as anyone else does. How about smokers with lung cancer? They brought it upon themselves, and yet still society cares for their needs. And even then, there’s a difference. They didn’t need to smoke, but we can’t help our BIID.
I’m not saying we should be denied treatment, infact i welcome the treatment if all it is is mentally preparing me for real disability. My point is treatment with this and indeed any illness whether it be physical or mental HAS to start with the individual. Its a well know fact that a positive and healthy attitude benefits the recovery from illness, in some cases its all that’s needed.
If we wish to be “cured” we need to take a long hard close look at our own nature and basically be bare bones honest with ourselves as to what it is we want, need and what would truly benefit us and those around us in the long term.
On a personal note, i did this a few years back, and i was able to come to peace with myself and this desire, Yeah the frustration at times can be a bit of a kick in the nuts, but generally i can keep it all in check and it i never let it turn into depression. So for me it’s been 25yrs of turmoil, confusion, guilt and isolation, and 5yrs of relative calm with the occasional mad thought of jumping out the window j/k.
However, we’re all different, what might work for me, may not work for someone else. So i say do what ya gotta do and be happy and remember…. “Always Look On the Briiiight Siiide Of L…………” ugh you get the picture !
To what extent do you believe that your results may have been influenced by the placebo effect?
14 On 24 June, 2007, Claire said:
I don’t know, honestly. I can say this, though. I was aware of the possibility of placebo effect. I actually *didn’t* want it to work, I was worried about it actually working, because I felt as if it would be taking away a part of my identity and I was concerned about that. So I don’t think “wishful thinking” had anything to do with it, because what happened wasn’t what I was wishing for.
And anyway, what is wrong with “pacebo effect”? If it works, it works. Placebo effect can take away pain. If the pain’s gone, who cares?
I wasn’t trying to say that there was anything wrong with it if it worked, though I find it is wise to consider placebo when applicable. After all, while the treatment may indeed be functional, there is still a big difference between stimulating certain areas of your brain, and a placebo.
Placebo isn’t always based on wishful thinking btw, but rather expected results.
Warning, yet another long rambling boring post from Will.
Placebo effect, positive mental attitude, or as i have been calling it recently (for some unknown reason) Positive mental thinking ! erm.. PMT !!!?
Anyway, what ever you wanna call it, it has been proven to very beneficial especially in terms of pain relief, and as Claire said if it works thats a good thing. Unless your a slimey TV Evangalist trying to convince you that God’s really doing it and should thank Him by sending the evangalist all your money (hate those guys, but thats another story)
The interesting thing Claire said in your last post was being concerned it would take away part of your identity. And i’d say to you, (you may not wanna hear this, but) thats exactly the thing you should be finding out, Is it really a part of You, your nature, your character, the very fabric of your heart, or is it an aquired desire stemming from your childhood, or some sort of sexual fantasy, maybe even roleplay, or perhaps just a simple need to be different.
I’m sure somewhere you mentioned your desires come and go, sometimes really strong, sometimes hardly visible. I went through the same thing about 5 or 6 years ago, and it used to drive me nuts. One moment it felt like every single cell in my body was literaly screaming out “I gotta be a para RIGHT NOW” then ten mins later id be thinking “Nah, id hate it, i’d never cope, its a dumb-ass idea” It was a constant tug of war on the inside and they were using my brain as the rope, and, it was begining to fray.
So, as i mentioned in the purge thread, i purged, asked myself some seriously upfront questions, and didnt bullshit myself (thats actually harder to do than you might think) No excuses, no crap, no self justification for these fantasies or actions, just plain, hard, cold facts. Do i really want to spend the rest of my life paralysed from the waiste down ? never walk again ? no more regular sex ?, no bladder or bowel control ? possibilities of life threatening pressure sores ? rejection ? my life span being cut short by ten years or so ? etc. etc. Was i really willing to risk all this, just to experience the lifestyle i craved ? and here’s the real test, If i had a pill in front of me now that if swallowed would cause permanent paralysis at my desired level, no going back, no saying, erm.. i made a mistake can i spit it out and not be paralysed, a one way door, fin. Would i do it, would i really swallow it ?. I found it all too easy to say yes in my mind, in my fanasty, in my imagination, but, in reality ,the real deal, genuine, the real I AM ??.
Here’s what i found out, (sorry about the french), but i realised id be shit scared, id have some serious doubts, id be really hesitant, but, id still do it, i would be willing to take the risk and go through what need to be gone through. I realised once the paralysis had set in, it would be really difficult to adjust both physically and mentally, i’d probably be full of regrets, i would expect part of me would desperately not want to be permanently disabled and i’d have to deal with it and live with it. Basically all the emotions and adjustments a real para would face if for example they had an innocent accident, but with a whole load of extra crap thrown in due to the fact that i had chosen this of my own free will. Its not just fantasy anymore folks this is real life !!
So eventually i come to the point i’m trying to make. By being bare bones honest with myself i laid this desire on the line, kinda like sacrificed it, and just simply forced myself to accept the results whether they were in favour or against.
As a result, i’m now have relative peace with it, it does’nt drive me nuts anymore, i dont lose sleep over it, and i dont need to sit in my wheechair and pretend to keep the monkey on my back fed and watered.
So, by laying down part of my perceived identity, i actually found my real identity. The hard part is, “when the hell is my body gonna catch up and join the party” !!!
Very interesting, Will-what you have described is very similar to my own feelings and dealings with BIID. For a time I was highly obsessed with becoming a RAK, about 25 or so years ago. I thought through what I believed the negative ramifications of becoming a RAK in practical terms of living my every day life. I embarked upon a career that was physically demanding and there was probably no way in the world I could have succesfully entered that profession other than able bodied. I had no clue at the time as to the possible complications arising from surgery. I would have been dependent on my parents a lot longer, etc. etc. That alone told me that surgery would never be an option.
My pretending methods became more sophisticated over the years, and this helps me cope immensely.It is not, of course the real thing, I can not do it in public.
You do bring some interesting points, though. This is part of my identity, I SHOULD be a RAK, it is the correct image being reflected in a mirror but I some how think I would actually regret the real thing. Perhaps the permanance of surgery there is no going back. Pretending sessions, like all good things must end. But, I can always look forward to the next fun time.
Thats good Ronald, it clarifies just exactly were you are with this thing.
To my understanding, and correct me if i’m wrong cause i dont want to put words in your mouth. You’re much happier if the real life you is an able bodied person, but the mirror image or fantasy image or even the roleplaying image is a RAK. So, if you were to get thoughts of doing something dangerous to cause a real amputation of your right leg then you now know that its not really coming from you, its just a thought kinda floating around the ether trying to tempt you into doing something silly, or get you discouraged or depressed or some such. So, the best thing to do with these thoughts is just ignore them or tell them to bugger off ! Trust me, with a bit of persistence they get the message and do leave.
It really does bring a certain amount of freedom when you find out just exactly where you slot into this whole BIID/pretender/dev thing.
19 On 25 June, 2007, Eric said:
Have to say, I thoroughly enjoyed reading your posting. But as a person who has struggled with hearing troubles my whole life, and as someone who used to have to undergo irrigation of the ear on a regular basis, I would have to say NO WAY to getting it done on a voluntary basis, study or not! It’s painful and harmful if done without completely sterile equipment and in the right way, as doing it wrong can cause permanent loss of hearing, not to mention severe pain! I have been there, where the irrigation didn’t quite go right and I had ear infections that caused permanent damage to my ear. Now, while I think that there is something in this study, there may be a different way to stimulate parts of the brain. They have this amazing implant for people with severe Tourette’s Syndrome and Epilepsy that stimulates the part of their brain that causes the troubles and makes the symptoms go away, or at least, puts them under control. So it’s always possible something like this could happen for folks with BIID.
I hope that before you let anyone squirt anything or poke anything into your ear, you think about the possible consequences to that. Doing it wrong could cause sever damage, permanent vertigo, and then you’d be no closer to a cure than you were beforehand. No one wants to spend their life too dizzy to walk. It’s no fun. I know. I’ve been there before, and 4 surgeries later I still get dizzy for unexplained reasons. Please take care not to let that happen to you.
That was one issue I was wondering about, but I sort of assumed that because they’re doctors that it would be OK. Silly me.
21 On 4 July, 2007, Claire said:
Eric, somehow I missed this last post of yours until now! My apologies. Thank you for the warning. I should mention that they twice examined my ears for any existing damage before going ahead with the procedure. Once just after the neurological exam and once the next day just before the treatment. That said, your point is well taken.
Ok first of all… if someone wanted to stick a needle into my ear I would jump out of my chair and run directly out of the office. OUCH!
23 On 11 July, 2007, Claire said:
Well, perhaps, but one should be willing to tolerate some discomfort (at the very least) for the greater good. Anyway, it wasn’t a needle, it was a small, flexible tube.
24 On 13 August, 2007, Claire said:
I heard from Paul McGeoch today, and he gave me permission to quote him on a couple of comments he had regarding this discussion:
“Yes I read the aversion therapy suggestion. They are wrong. With this the aim is to get the participant to associate something (eg the wheelchair) with an unpleasant stimulus (eg caloric). If that had been my aim (which of course it was not) then I would have done the caloric with you sitting in the wheelchair not lying on the couch. http://en.wikipedia.org/wiki/Aversion_therapy
Also I read one guy’s post about the extreme risks of caloric. Now certainly if someone has perforated ear drums then it should not be done. That is why I looked in your ears. However, in people with normal ear drums the risks are minimal.”
25 On 21 October, 2007, Something shocking and creepy, deaf wannabes, pretenders and others - Page 3 - AllDeaf.com said:
[...] it’s a question of body image) Here is my blog entry on my trip to see Ramachandran and McGeoch: Vestibular Caloric Stimulation » transabled.org » Blogging about BIID Thanks Kaitlin for your sincere [...]
i will be hopefully be doing this study if paul comes to Australia in January All signed up just waiting for paul to get back to me to arrange a time i will post up the results and let everyone know how it all goes Dave
27 On 23 December, 2007, Sean said:
Paul is coming Down Under? Cool. I’ll have to ping him :) Thanks for the heads up dave :)
29 On 31 May, 2008, Diet pills said:
Diet pills…
Finally weight loss products that work!…
Hi, I just came across your page and have not read everything, but thank you for putting this website together. I did not even know what I had until recently, but I have had BIID since I was as young as I can remember. It has gotten worse lately and I get tired of fighting it all the time. For me it has always been my left leg below the knee. I now see a psychologist with mixed results, he does the best he can. I am a highly rational, highly educated person and because of this it becomes even more frustrating. Well I will try and read more and keep you posted, thanks Heath
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1 On 23 June, 2007, Robin said:
The main thing I worry about when thinking about responding to any kind of study or anything is that most people in the medical community (at least, those that have *heard* of BIID, and most that haven’t heard of it go away and do research, then come back thinking this) don’t see what I have as BIID. Most people in medicine seem to classify BIID as needing an amputation, and maybe needing to be a para, but few seem to include people like me, Marie, etc. in BIID…