Being an amputee is not easy; while I have a sense of humor about it there are times when my emotions get the best of me. Post amputation I was fine mentally; there was a small nagging voice that echoed “you will never be normal again, ever”. Over time I learned to ignore that pestering phrase because in hindsight I was never ‘normal’. I’ve met some awesome amputees and some that have a fetish for it; be it acrotomophilia (a sexual attraction to amputees) or apotemnophilia (wanting to be an amputee or have a body part removed). It wasn’t until I got a call from a nurse that worked with me at a physical therapy facility that I learned about the lengths that people go to in order to fulfill their desires when they suffer from BIID / Body Integrity Identity Disorder.
John, not his real name, struggled with his BIID for years. He felt abnormal having two legs and wanted nothing more than to have the left one removed. When I heard this over the phone I was enraged. How could someone with a health leg possibly want to just have it lopped off? He tried cutting it off himself only to pass out from blood loss, he shot himself in the thigh but it was not considered an amputation situation then he got desperate and tried to lay on the railroad tracks only to fall asleep and roll off the rail. After each incident he received mental counseling and medication; obviously it didn’t work.
He finally succeeded in damaging his leg so badly that it was amputated below the knee. He admitted that he did it on purpose and was actually upset that he still had a knee and upper leg. Again, I am hearing this on the phone and it isn’t sinking in. I’d give pretty much anything to have my leg back so listening to this gruesome story was working my last nerve. My former nurse asked me if I would talk to John at the rehabilitation facility; she was terrified that he would leave against medical advice and try to destroy the top part of his leg.
I was expecting to see some wild haired, red eyed insane looking man but he was athletic, attractive and educated. I knew from the first words he said that he was a master at manipulation capable of charming the pants off of an 80 year old nun. He said that “the system” failed him and that his situation could have been avoided if a qualified surgeon would have agreed to the operation. I listened to him talk about how everyone was to blame and how no one respected his wishes but I never heard him apologize for what he put his parents, wife and children through because of his selfishness.
I went to the facility every day for a week; every day it was the same routine with him. He complained about being invisible in the medical community but was not making any progress with the physical therapy side of things. He said he wanted to be in a wheelchair for the rest of his life. That was the straw that broke the camels back. I put my backpack on and sarcastically thanked him for wasting me time. “You never wanted to be an amputee or to have your foreign appendage removed, you wanted to sit in a wheelchair and have pity heaped on you. I hate to tell you but you didn’t have to go through all of this, you could have spend $800.00 on a wheelchair and been done with it”.
That was the last time I saw him. It was more than a year later before I ran in to my former nurse when I was getting my leg adjusted; she knew how angry I was about wasting my time but felt that I needed to know the details of “John”. As I suspected, John tried to damage the upper part of his leg to the point that it too would need to be amputated. He sat in his driveway, in his wheelchair, repeatedly slamming the door on what was left of his leg. A neighbor saw what was happening and called the police; he was subsequently put in a long term care facility as his wife could not care for him and started divorce proceedings. I hope that he gets the help he needs. I have no idea what demons were haunting him or what compelled him to go to such lengths.
Body Integrity Identity Disorder is more commonly called “alien limb syndrome” amongst those who are afflicted with the ‘disease. I am writing this from the standpoint of an amputee so I see things from a completely different standpoint. BIID is a psychological condition where the person feels that a part of them does not belong; for some it is a finger or toe, for others it can be an entire leg or arm. Not everyone goes to drastic and dramatic lengths to have a limb removed; you can fly to places like Brazil, Thailand or Guatemala and have a limb removed for about $4,000.00 providing you are paying in cash with U.S. funds.
BIID sufferers are usually steadfast in their argument that they have the right to remove a part of their body. It’s their ideology that it is their body and they are not happy with it and therefore have the right to change or modify it. The BIID sufferers I have met have all said that they were extremely jealous of my situation, being an amputee. Again, I am a below the knee amputee that resulted from a septic infection. The mindset needed to actually remove a limb is massive; most plan at least two or three ways to remove the foreign limb after they are denied the procedure by mainstream doctors.
From a legal standpoint, removing a perfectly functional limb is a violation of the Hippocratic oath. If someone with BIID would have post-amputation regrets about the removal, the doctor, hospital and care providers could all be open to lawsuits and compensation. Even knowing that, sufferers of the disease will not be denied what they feel is their right to remove whatever body part feels foreign to them. As mentioned, there are foreign clinics that are starting underground advertising of “safe and complete limb removal”. From the ones that I have heard of and seen online, most also offer transgender / sex change operations. What people fail to realize is that there is a lot of crucial after care needed once the limb is amputated. The risk of septic infection, further limb trauma and necrotic fasciitis are just a few of the post operation fields of danger.
BIID is not the same as elective amputation for a sound medical purpose. If someone has been suffering for years from chronic leg pain from an injury, they would be given the option to have the limb removed. Even then, careful mental screenings are given to insure that the person is completely aware of what is ahead of them. BIID sufferers often do not think about the practical happenings in the post-amputation world. Their mindset is “this is not part of me” and the easiest way to remove the foreign body part.
Some of the most common forms of self amputation include using dry ice to cause end stage frostbite as well as damaging a limb through loss of circulation to a degree that amputation is necessary. If the person can not remove the limb themselves, they will try to damage it so that it will have to be removed to save their life. I did not have a choice in the matter, I woke up from a coma and my leg was gone. From my standpoint I have an incredibly hard time understanding how or why someone would want to have a healthy functional limb removed.
There are so many different areas that come in to play with BIID. What causes someone to feel that their arm or leg is foreign? Why can someone have a sex change or breast augmentation but they can not have an elective amputation? Is there a cure or solid treatment plan for those who suffer from BIID? Can someone who willingly damages their body with eventual result of amputation be held for the same type of psychological observation as someone that tries to commit suicide?
Most Body Integrity Identity Disorder sufferers have seen how the medical community will react when they ask to have a limb removed. This usually leads them to seeking out other BIID sufferers who have had successful removals. What works for one person will not work for another so most first attempts usually land them in the emergency room and then under a psychiatric hold for up to 72 hours. After that, they shun conventional options and remain committed to removing the foreign body part by any means necessary.
To learn more about the University of Chester symposium entitled “Broadening The Scope of Diversity: A Study of Equality and Body Integrity Disorder” please view the view of it here: http://vimeo.com/21065360
Sources:
http://www.nlm.nih.gov/hmd/greek/greek_oath.html
http://www.biid.org/
