what does it feel like for your leg to be cut off
42-32214039 Photograph: Emma Kim/Corbis
In 2004, Dr. Michael Commencement, a professor of psychiatry at Columbia University, coined the term Body Integrity Identity Disorder (BIID) to describe a perplexing condition he'd heard about via a documentary producer: People with perfectly good for you limbs were expressing an intense desire to accept themremoved.
Rather than a coherent psychological disorder, BIID is better thought of every bit a cluster of conditions, united past the potent sense in a sufferer that a limb, usually a leg, shouldn't be fastened to their torso — a sensation of not "plumbing equipment" one's body akin to gender dysphoria. For some, it takes on a sexual cast: They become intensely aroused when they imagine themselves every bit an amputee (this is known as apotemnophilia, a status named past Dr. John Money in the '70s). For others, information technology's all about identity: They want to exist an amputee because they want to exist part of that community. And so there are those for whom their limb doesn't feel similar a office of their torso (practitioners who regard it as a neurological disorder call this strandxenomelia).
BIID is a challenging condition to research, so it remains little understood or reported outside of sensational tabloid stories or Constabulary & Order plots. (As Dr. Kickoff noted in an interview, 1 method that might shed light on the origins of BIID could involve exposing kids to amputees in early youth and so following upward to encounter whether this increases the odds of them developing the disorder, simply this is plainly an ethical car crash.) However, his research with 53 patients who accept the disorder has revealed some trends: It's usually the left leg that people want removed, it often presents in early childhood, and sufferers are most likely to exist white and male. And it is nigh always kept clandestine, fifty-fifty from close relatives, because most people simply tin can't empathize with the desire to be an amputee. A shocked response to a babyhood confession often leads ane to go silent for the remainder of theirlives.
Here, a 71-yr-old man from California talks nigh living seven decades with what he describes equallyxenomelia.
Tell me a fiddling flake about yourself.
I'm retired, only I was a self-employed construction worker my whole life. I'm married to my 2d married woman and we have a large blended family, including ii grandchildren who live with united states. I'm a big guy: about six-foot-iii, fairly muscular, and I've always been very potent. My biggest trouble is a consummate hugger-mugger: I take an unexplainable desire to do something that most people would dread. I want to have my left leg amputated, only above the knee. I strongly feel that my left leg just shouldn't exist on my torso. I've thought about it obsessively every single day of mylife.
Literally your whole life?
It'southward always been in that location but it got much worse when I was going through a divorce in my late twenties. I met my first wife when I was a teenager and nosotros had a child earlier I turnedxix.
Married with a baby, that's a lot of responsibility for a teenager …
It was a big weight to carry, and I was only making $1.50 an hour. Nosotros built a business firm and I started my ain construction business when I was 23. I put all my energy into that and my income kept doubling. I oftentimes traveled for work and sometimes I was gone for five days at a time. That's when she started fooling around on me. I don't think it was considering I was a workaholic — I remember my absence only presented the opportunity. She didn't retrieve we were having enough fun, but I was trying to build a business so we could have a nice future. I divorced her and was unmarried for almost 5 years before I met my currentmarried woman.
Does anyone know about information technology?
I recently told my wife, but if anyone else who knows me found out, information technology would be devastating. Nobody understands it and a lot of people depend on me and call up I'mperfect.
Can yous depict the precise thoughts?
It'southward a strong feeling that I should have been born without my left leg. If I make eye contact with it and I'yard not fully concentrating on something else, I obsessively think: This leg shouldn't be there. And information technology's very disturbing considering I know that's not normal. It'southward like my brain perceives my body without a left leg. I can be talking to someone and all of a sudden unable to focus on what they are maxim because I'k thinking most my leg and wishing it wasn't in that location. It's an overwhelming urge. I might be dozing on a recliner and I get this weird feeling around my knee joint that that'due south where it needs to exist off. The busier I am the more I can control information technology, but if I get stressed the thoughts intensify.
Exercise you recall when it began?
When I was about 5 or 6. I was in downtown L.A., and since it was simply after the war, there were lots of amputees effectually. I vividly remember seeing a man get off a streetcar. He had a peg leg and I thought: I wish that were me. After, I began to constrict my foot right upwards behind my bottom when I was in bed at night — little kids are very flexible. I'd then place the covers downwards over my genu so information technology looked like at that place was nilin that location.
Over the years I developed a scrap of a non-sexual peg leg fetish. I remember around 10 years sometime being with my grandfather on a construction job and I made myself one. I told him it was for a Halloween costume, but it was nowhere virtually October. But non once did I think there was anyone else in the world who had these thoughts and I didn't think about removingit.
Did you ever see an amputation upwards shut?
When I was a child, a relative's husband got his hand stuck in a machine and he cut some of his fingers off. I recall visiting them and they were playing cards with another couple he'd met through rehab. I shouldn't even retrieve any of this except this other guy had lost his left leg. He was sitting in a chair, wearing a pair of jeans, and his leg was off in a higher place where the cuff of the jeans were then the cuff wasempty.
It stuck in my mind. Information technology was effectually the same time I saw the guy with a peg leg. Afterwards a close male relative who was a race-auto commuter got in a bad blow and ended up having his leg amputated.
Were you jealous?
No, I was really immature. Well, y'all know, really I'm not too sure that I wasn't. He didn't like the fact that he didn't accept that leg, just I would have relishedinformation technology.
Does it accompany any sexual desires?
It's non sexual — I don't get off thinking almost myself without a leg. The just sexual connection I can remember of is that I have wondered what it would be like having sex with that legmissing.
Does that idea excite you?
No. Actually, there is one style that sex is involved. I have these early morning episodes, almost panic attacks, and 1 of the things that relieves them is for me to curlicue over to my wife and do a petty hugging and kissing and perchance make dearest. It's one of the only times I'm relieved of thethoughts.
What was your childhood similar? Did y'all ever experience whatsoever trauma or unsettling events?
I'm an only kid and I grew up with my parents who worked together. My dad was a architect and my mom would help him with his business. They lived lxx years together almost every day. I was around lovingpeople.
I didn't have much pressure, but my parents were firm well-nigh certain morals: Don't prevarication, don't steal, don't cheat on your taxes or your wife. Nonetheless, I've had a lot of stress in my developed life. I went through a divorce. I've raised many kids, two of whom my current wife took in every bit foster children. 2 of our kids are not with u.s. anymore. One was killed in a motorcycle accident and another died suddenly of heart failure. My oldest had a bit of a trouble with drugs, so we ended upwards raising the kids. Besides, I'g an only kid, so I was the sole caregiver for my parents for the last few years of their life. I've lived through alot.
It was less of a trouble when I was a young teen — I was distracted past cars and girls. When I was budgeted 30, following my divorce, I started to think I was going crazy. It bothered me more and more than, and and so one solar day I idea I should just get a saw and chop my legoff.
Practice you spend much time thinking well-nigh having it removed?
I've worked around heavy equipment my whole life, so I've thought near smashing it. I've thought almost sawing it. I've made quite serious physical preparations at least three times. I recently got to the point I just couldn't stand up it anymore and thought virtually telling my doctor what I was planning and to expect me to exist in the parking lot of a hospital. I figured I'd put a bunch of rope effectually it real tight and take a saw and chop information technology off. That way I'd become immediate medical help. I would also saw the leg into two or iii pieces and so they couldn't put it backon.
At that place was one time I had a laborer working here on the property and I started my chainsaw to cut off a small tree close to the ground so he could hands remove the stump. I was standing on the side of the hill with this chainsaw in my paw and I only thought, Oh, it would exist so piece of cake. The temptation was veryexistent.
It seems like a real tension: Y'all are so strong and physical and capable, so if you lot were to remove your leg, it would really alter your quality of life.
Information technology would. Nevertheless, I've done so much peg leg research that I know how to walk on one. But information technology's true, I don't desire to be handicapped. I'm very active. I ski. I utilize heavy equipment. My wife and I honey to trip the light fantastic '50s swing together. I have many acres of property to have intendance of. I'm into classic cars and I have iv of them, ii of which are stick shift. I will most likely die with 2 anxiety, mainly considering of my family, my responsibilities, and my married woman. If I but had myself to consider, I'd probably doit.
But you didn't tell your outset wife?
No. I knew she wasn't a very agreement person and I lived with it meliorate so. I put all my thoughts into edifice my concern rather than cut off my leg. During my divorce was the get-go fourth dimension I fabricated a serious plan to phase an blow and simply do it.
What did yous do?
I modified a dump truck and I was gonna stick my leg in the bed hinge and let the bed down. The fear of bleeding to death is the only thing that stopped me. I wasn't scared of the hurting. I didn't desire to die. I'm non that unhappy a person.
How close were you?
I guess I was about x seconds away.
How did you experience in the moments leading up to it?
My heart was racing and I was repeating in my head I have to practice this I have to do this I have to practice this. Then I thought No, I'm not going to do this now. I had put a bungee cord effectually the leg to human activity as a tourniquet and I wondered if it could really control thehaemorrhage.
Do you regret not going through with it?
Information technology'due south my biggest regret, ever. It would all exist gone by at present and I'd have had plenty fourth dimension to become used to living without my leg. If it was what my psyche really needed, it would have been accomplished.
How often do you think well-nigh your leg?
It'southward the first thing I call back most every single 24-hour interval, and then the thoughts come hourly. I sleep about five hours each dark. I used to leap up to attempt and get it out of my listen, but now I just lay at that place and sometimes I'll fall into a sort of one-half sleep and have a dream and really convince myself that it's non there merely to wake upwards and detect out that it is, and that'south terriblystressful.
How did y'all find out that your condition has a name?
I lived for nearly 50 years thinking I was the just person who has these thoughts. I accept some issues with my left foot — pinched nerves and plantar fasciitis. About xv years ago, a podiatrist was injecting my foot with cortisone to relieve the hurting. I joked and I said, "why don't yous just cut that sucker off?" I followed up asking if everyone always actually did that. She said, "Yous don't take apotemnophilia, do you?" That was the commencement time I'd always heard the give-and-take. I wrote it down on a piece of newspaper and tucked it away. About eight years ago, I got information technology out of my dresser drawer and though I was barely able to use a computer, I looked it upwards and I thought, You gotta be kidding me. There's actually other people who experience this mode. Even though I don't take apotemnophilia, I learned nearly BIID.
Did you seek therapy?
No, only I did I attempt to go help after the dump truck incident. I went to my family unit doctor, only he freaked out and said that it's a sexual disorder that had cranked up considering I was unmarried — anybody thought information technology was a sexual thing back then. He sent me to talk to some other guy who said the same thing and referred me to another who agreed. All three were old men and they screwed me up worse than I already was. The boilerplate psychologist doesn't know anything about it. I wished I hadn't told anyone.
How did you end upwards telling your wife?
Several years agone, I got to a indicate where I couldn't cope and I broke downwards and told her. She suspected at that place was a problem because I accept vivid dreams and I talk in my sleep. Whenever I see myself in a dream I don't take my left leg. I regularly wake upwardly distressed and sweaty after euphoric dreams of living without that leg. I once told her I'd had a dream that my leg was cut off, then I recollect she idea I had a fear of losing my leg. She's a sweetheart, but she could hardly deal with it — she idea I was kidding. It was horrible; I felt like someone lifted an creature off my shoulders only to realize that she couldn't take information technology. And of course, she couldn't. I seemed similar anidiot.
Did she modify her mind about it after she'd had time to process what she'd learned?
I have a briefcase full of textile from the net. She read information technology all and said, "Well, I really want you to exist happy," just a few weeks after that she said she but couldn't handle it. She's come around a picayune bit. I understand why she doesn't like to hear about it, merely I've come to realize that it helps to talk. But it upsets her, so I refrain from discussing it.
Was in that location a change in how you lot felt subsequently you told your married woman?
It had been bottled upwards within me for so long so it was a release. But the concluding thing I want to practice is alienate myself from the love of my life. And because she wasn't very understanding when I showtime told her — what normal person would exist? — I was worried about that. Following ane of our conversations, she cried and told me that if I cut it off she'd divorce me. She later on said she wouldn't.
Have you always tried to numb it so yous can't feel it?
No, but I've heard that in the U.Thousand. the popular matter to exercise is put on a tourniquet and place your leg information technology in a bucket of dry ice so information technology's dead and has to be cut off. I could never exercise that — it seems like information technology would be awful painful. Information technology sounds stupid, but it's a very visual thing, then when I can't see information technology, I'm not and thenbothered.
Are yous a visual person?
Very much and so. My wife and I like people watching. I similar to expect at the view of my holding from my business firm. I similar to look at my cars and, this might be a little tacky, I like to continue the lights on when I'm making love to my wife; I want to seeher.
Do you exercise things to avert looking at your leg?
My married woman and I have a double recliner and in the evenings nosotros sit down and sentinel TV. Most of the time I have my leg down the crack between the ii footrests considering I get so irritated when I seeit.
Have there been especially stressful moments where it's worse than other times? What about when yous were caring for your ailing parents?
No, because I was so involved with taking care of them that I didn't have time for it. It's the worst when I get stressed over a bunch of little things or when I'm alone with no lark — that'south when I think about doing something to "fix theproblem."
About a year ago, I idea, I accept to get the opinion of someone who knows a lot about this. I called the Columbia professor Dr. First; he asked me ten minutes' worth of questions and said he thinks I have it as bad as it comes. And he told me about a man chosen the Gatekeeper who could offering me a surgical selection if that was what I was interestedin.
The Gatekeeper?
Aye. He's a man who besides has this trouble. He went overseas to have his left leg amputated and now he helps people like me. I've been cleared, so I just have to say the word and he'll make it happen. He says surgery volition fix yourlife.
But there are some people I take exchanged emails with, via an online group. All of them take had left leg amputations. They still captivate about their limbs and talk about other amputations even though the leg is gone and they claim to be much happier. My dream is if I had this leg amputated information technology would all get away and I'd be a normal person, with a false leg. That'south the difference between me and these other sufferers. Having the leg gone simply still being plagued past these thoughts would make my life worse. Also, I saw photos of one of the amputations he organized and it wasn't bully.
Does that mean you have an ideal stump in mind?
Oh yes, I fifty-fifty know what kind of closure I would have. There'south two or three different methods, they use two or 3 dissimilar flaps to comprehend the bone on the end and there's a type where it's kind of airtight like the scar would exist correct in the middle and slightly curved around the end. Some of the flaps end up being all bumpy and lumpy. I know exactly how I want it to look: With a centerline closure a couple of inches above the knee. I had a friend who had his leg amputated due to circulation issues. His stump was absolutely pristine, very clean and tapered.
How practise yous feel when you see amputees?
Envious, especially if information technology'south a left leg. But if I run into someone with their arm missing I call up, Oh my gosh, you lot poor thing! I wouldn't want to lose my correct leg, either.
If you did have it removed, would y'all want a wheelchair or a prosthetic leg?
The peg leg thing with no human foot has always enthused me. Dr. First suggested that it'due south because information technology doesn't resemble a real leg, simply information technology's something I tin walk on. I'd like to have three prosthetic legs, 1 for everyday apply, one for special occasions, and a peg leg for fun. I saw a guy at a car show who had one made out of aluminum; he'd busy it with stickers and other racing memorabilia.
Does researching amputation calm yous down or does information technology make you feel anxious?
It's exciting. It tin can exist a footling disturbing and it can be a skillful feeling; information technology's like an adrenaline rush.
What'south the worst thing about this condition?
It'south something I can't fix. I repair my own cars. I'm edifice a classic auto correct now, from scratch. If something's broken, I want to gum information technology dorsum together. And I'm responsible for a very big family. I'1000 alogroller.
Do you think yous'll ever actually do it?
If my wife said, "Get ahead and do it if it volition make y'all happy," and if I was sure she'd be happy with me doing it, and that I'd be satisfied later, I'd become alee and do information technology. But at present that I'm learning more almost people who have done it but not had any relief from the thoughts, I accept moredoubts.
X years ago, I was just waiting to practise it when I retired, thinking I won't be equally busy — I'll merely get that thing off and I'll be happy the rest of my life. But information technology doesn't look similar it'south going to piece of work out that way. I guess I do believe that living with only one leg could not possibly be as bad every bit the everyday torment that this condition causes. The medical community needs to knowthat.
The Gatekeeper told me a story. He was one time at a convention for BIID people and someone came up to him and asked if he could take a pill that would brand it become away, would he? And he said, "I don't call up so, because this is who I am." The difference betwixt u.s. is I would take it. Not necessarily for myself, considering in a style this condition is who I am. I would accept it for a better life. I would have it for my married woman. I would take it for myfamily unit.
This interview has beenedited.
Source: https://www.thecut.com/2015/01/what-its-like-to-crave-amputation.html
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