Children and BIID
Until twenty-four years ago, up to age forty, I suffered with Body Integrity Identity Disorder, not that I even knew what it was nor that it had a name. Now BIID has had scientific results which seem to confirm that it was not some peculiarity of my tormented brain alone, and that there are things we need to do for the sake of our children. If any of you have preconceived thoughts about amputee-by-choice and devotees, I would be grateful if you would put them aside, and read on.
Doctors VS Ramachandran and Paul McGeoch at the Center for Brain and Cognition at the University of California San Diego (UCSD), have been investigating BIID, as a friend and colleague of Ramachandran is also a sufferer. If you listen to ABC (Australia) “Radio National” you may have heard Ramachandran, as the ABC broadcast his “2003 Reith Lectures” for the BBC, he has spoken on “All in the Mind” and spoke recently on “The Science Show” on the subject of “Transsexuals and the Phantom Penis.” He is in Australia to deliver this year’s “Alfred Deakin Lectures.”
Ramachandran’s credentials are impeccable as this short biography shows.
One of the most efficient scientists in the world today, Dr Vilayanur S Ramachandran is Director, Center for Brain and Cognition, and professor of Neurosciences at the University of California. He had received many honours, including a Fellowship at All Souls College, Oxford, the Ramon Y Cajal award from the International Neuropsychiatry Society, the Presidential Lecture Award from the American Academy of Neurology, and two honorary doctors. Newsweek named him a member of the Century Club, one of 100 most prominent people to watch in the 21st century. En route to London, where he will be awarded the 2005 Sir Hendry Dale prize and a life Fellowship by the Royal Institute, Dr Ramachandran spoke to The New Sunday Express in Chennai…
Ramachandran has recently been awarded the Indian equivalent of a knighthood.
Ramachandran and McGeoch noticed a similarity to the effect of some strokes in the right parietal lobe, to people with BIID. The suggestion is the brain image of the body does not tally with the real body, and further, vestibular caloric stimulation (VCS) may reduce the symptoms. They have had a paper published in the Journal of Medical Hypotheses – “Can vestibular caloric stimulation be used to treat apotemnophilia?” The paper is available on-line at [www.sciencedirect.com]. Vestibular caloric stimulation is nothing more exotic than filling the left ear with chilled water, and apotemnophilia is a largely obsolete name for BIID.
On “The Science Show,” Ramachandran spoke on the subject of “Transsexuals and the Phantom Penis.” As he explained it, innate feelings of a phantom penis depend on the desire of the individual – a woman wanting to be a man often experiences having a phantom penis, before any treatment is started. A man wanting to be a woman does not experience a phantom penis once it has been amputated, whereas a ‘normal’ man having his penis amputated for medical reasons, usually experiences phantom sensations afterwards. These findings tend to mirror work with amputees and BIID sufferers, and suggest a brain wiring problem and not some perverse imaginitis.
As a member of two Yahoo chat groups relating to BIID, I have been in email contact with Dr. Paul McGeoch. He is having difficulty finding volunteers among the BIID community to test their hypothesis, but as I said to him in an email (additional comments in parenthesis).
Regarding the lack of response to your call for BIID sufferers to volunteer to undergo the VCS test, it probably relates to my theories expounded on ‘Fighting-it.’ (web chat group for BIID sufferers) Those of us who have grown through puberty in particular, are so imbued with the concept of being an amputee, that we cannot and will not imagine life any other way, so to undergo a treatment that will rob us of the idea of becoming who we really are, is totally against everything we have grown to become. As I put it, our image has become ‘welded on’ to the extent it is welded onto the brain. There may be a better way to express that, but I trust you get my drift. The present generation of sufferers is going to be interested only in gaining safe surgical procedures to ‘cure’ their BIID, and I believe nothing will change that. The only thing that can be done for the future is to ensure that BIID has widespread recognition in the medical and psychiatric professions, and that even children will feel free to discuss their ‘strange desire’ with parents and doctors – no doubt after they have found it on the web! These are the ones who stand a good chance of being helped, and possibly cured, before BIID becomes an immovable part of the self. At the end of “Complete Obsession” (a BBC documentary on BIID) Robert Smith (Dr. at Falkirk Infirmary in Scotland, who performed two amputations before management got the wobblies over the tabloids) mused over what future generations may think if society was to approve amputation as the only cure for BIID, and what benign treatments may one day appear. I think we will have to admit that surgery IS the only cure for ‘intractable BIID’ but VCS or something else may turn out to be the cure for ‘latent BIID.’
I may be getting a bit ahead of the work of Ramachandran and McGeoch, but I am suggesting, that those of us over our mid-teens will have to endure the personal torture and torment of trying to live with an often desperate urge to have one or more limbs amputated. For most of us as I said, there is no salvation. We have either managed our own amputation or we have no desire to change our intent to become an amputee, and for these relatively few, I suggest they be allowed such surgery to enable them to lead a full and happy life as their chosen amputee.
But our children deserve better than that. It looks as though it may be possible to tweak the brains of those who are starting to realize they have a desire to become an amputee. With access to the internet, such children are a rolled-gold certainty to try and find out more about themselves in a way I and my generation could not. Once out there, there will have to be web sites operated with every safeguard to their safety, where they are able to find the answer before they mature with the intention of becoming an amputee.
Some of my peers will object saying that this is robbing our children of their identity, but I see it as little different from vaccinating them against polio or measles.
Paul McGeoch tells me that the UCSD has permitted the testing of persons only over the age of eighteen years with VCS, but I fear this will be of little help. As I said to Paul in another email –
It is unfortunate you have been limited to treating over 18 year olds, because if the intention is to avoid full-blown BIID, I strongly feel we have to get to children before puberty. By the time they are 18, they are forming adult relationships, and these are going to be influenced by the depth of their desire to be 'transabled' as some in the Yahoo groups have started to use – amputee, spinal cord injury, etc. Normal relationship formation may become dysfunctional, and this is when thoughts turn to amputee partners, amputee porn as a substitute and suicide if all else fails.
This is my first step in a personal effort to get recognition for BIID within the medical and psychiatric professions, and among amputee support groups, as it is becoming clear that similarities with gender reassignment issues give BIID sufferers the same right for treatment as transsexuals.
So I guess this is a call for help: a plea. Anyone with an interest, vested or otherwise, needs to put aside their prejudices and opinions, and work to provide true and accurate information for our children, before their desire to become an amputee consumes and possibly destroys their lives, as it nearly destroyed mine.
Robert Vickers, 18th March 2007.
CHILDREN AND BIID
You may consider the following version suitable for publication.
One would have to live under a rock not to have heard of gender reassignment surgery or more colloquially, sex-change surgery. Whatever one thinks of people who desire or who have had such surgery, and hopefully we are sympathetic to their predicament, the general public, and the medical and psychiatric professions, have accepted the needs of these people and allow them the surgery to live at peace with themselves and their altered bodies.
There is another group of people who believe they too have incorrect bodies and would like to have them changed, so that they can live at peace with themselves and their altered bodies. Few people, including doctors, have heard of the condition, because sufferers like this author were so ashamed and confused by this bizarre condition, we suffered in silence or resorted to do-it-yourself treatments.
The condition is Body Integrity Identity Disorder or BIID, and considering the similarities to desires of transsexuals, the number of sufferers may be similar. The BIID sufferer feels from childhood, maybe six to ten years old, there is something fundamentally wrong with the body they are living in: specifically they have too many limbs, and they need the unwanted limb amputated.
At this point, the average congenital or trauma amputee will be suggesting the best amputation maybe of the head, but there is now reputable science to give credence to the disorder.
Neuroscientists at the Center for Brain and Cognition at the University of California San Diego (UCSD), have been investigating BIID, under the guidance of the world renowned Professor V.S. Ramachandran. Rama, to friends and colleagues, began studying BIID because one such friend and colleague was a sufferer, and naturally, Rama wanted to know why.
If you listen to ABC “Radio National” you may have heard Ramachandran recently on the “Science Show” with Robyn Williams, telling of “Transsexuals and the Phantom Penis.” Their findings mirror work done with BIID sufferers and people who have suffered a stroke in the right parietal lobe of the brain. The connection here is that some of these stroke victims are so alienated from (usually) their left arm, they must have it amputated. Their arm still works, they can feel it, see it, use it, but they reject the limb because the brain’s “body map” of their body has been altered. It seems no coincidence that well over half of BIID sufferers want a left limb amputated. Their work also shows that chilled water in the left ear hole will ease the desire in these stroke victims, a treatment known as vestibular caloric stimulation (VCS).
Ramachandran is having difficulty finding BIID sufferers to test his theory, but I can attest that once through puberty and early adulthood, the hold of BIID can become overwhelming, and the sufferer cannot imagine submitting to a treatment so devastating to their body image. But there is a possibility that our children need not suffer the same torment as I and others like me, have had to endure.
So computer savvy are our children, with access to the internet, they are a rolled-gold certainty to try and find out more about themselves in a way I and my generation could not. Should they find their ‘strange desire’ is BIID, they are likely to tell their parents, doctors, someone – or use the internet to find the answer. These are the ones we can and must help with VCS or similar, before they mature and the need to have a limb amputated becomes an obsession that can destroy their lives.