In 2004, Dr. Michael First, 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 healthy limbs were expressing an intense desire to have them removed.
Rather than a coherent psychological disorder, BIID is better thought of as a cluster of conditions, united by the strong sense in a sufferer that a limb, usually a leg, shouldn’t be attached to their body — a sensation of not “fitting” one’s body akin to gender dysphoria. For some, it takes on a sexual cast: They become intensely aroused when they imagine themselves as an amputee (this is known as apotemnophilia, a condition named by Dr. John Money in the ‘70s). For others, it’s all about identity: They want to be an amputee because they want to be part of that community. And then there are those for whom their limb doesn’t feel like a part of their body (practitioners who regard it as a neurological disorder call this strand xenomelia).
BIID is a challenging condition to research, so it remains little understood or reported outside of sensational tabloid stories or Law & Order plots. (As Dr. First noted in an interview, one method that might shed light on the origins of BIID could involve exposing kids to amputees in early youth and then following up to see whether this increases the odds of them developing the disorder, but this is obviously an ethical car crash.) However, his research with 53 patients who have 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 be white and male. And it is almost always kept secret, even from close relatives, because most people simply can’t empathize with the desire to be an amputee. A shocked response to a childhood confession often leads one to go silent for the rest of their lives.
Here, a 71-year-old man from California talks about living seven decades with what he describes as xenomelia.
Tell me a little bit about yourself.
I’m retired, but I was a self-employed construction worker my whole life. I’m married to my second wife and we have a large blended family, including two grandchildren who live with us. I’m a big guy: about six-foot-three, fairly muscular, and I’ve always been very strong. My biggest problem is a complete secret: I have an unexplainable desire to do something that most people would dread. I want to have my left leg amputated, just above the knee. I strongly feel that my left leg just shouldn’t be on my body. I’ve thought about it obsessively every single day of my life.
Literally your whole life?
It’s always been there 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 we had a child before I turned 19.
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. We built a house and I started my own construction business when I was 23. I put all my energy into that and my income kept doubling. I often 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 because I was a workaholic — I think my absence just presented the opportunity. She didn’t think 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 single for nearly five years before I met my current wife.
Does anyone know about it?
I recently told my wife, but if anyone else who knows me found out, it would be devastating. Nobody understands it and a lot of people depend on me and think I’m perfect.
Can you describe the precise thoughts?
It’s a strong feeling that I should have been born without my left leg. If I make eye contact with it and I’m not fully concentrating on something else, I obsessively think: This leg shouldn’t be there. And it’s very disturbing because I know that’s not normal. It’s like my brain perceives my body without a left leg. I can be talking to someone and suddenly unable to focus on what they are saying because I’m thinking about my leg and wishing it wasn’t there. It’s an overwhelming urge. I might be dozing on a recliner and I get this weird feeling around my knee that that’s where it needs to be off. The busier I am the more I can control it, but if I get stressed the thoughts intensify.
Do you remember when it began?
When I was about 5 or 6. I was in downtown L.A., and since it was just after the war, there were lots of amputees around. I vividly remember seeing a man get off a streetcar. He had a peg leg and I thought: I wish that were me. Later, I began to tuck my foot right up behind my bottom when I was in bed at night — little kids are very flexible. I’d then place the covers down over my knee so it looked like there was nothing there.
Over the years I developed a bit of a non-sexual peg leg fetish. I remember around 10 years old 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 near October. But not once did I think there was anyone else in the world who had these thoughts and I didn’t think about removing it.
Did you ever see an amputation up close?
When I was a kid, 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 remember 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 above where the cuff of the jeans were so the cuff was empty.
It stuck in my mind. It was around the same time I saw the guy with a peg leg. Later a close male relative who was a race-car driver got in a bad accident and ended up having his leg amputated.
Were you jealous?
No, I was really young. Well, you know, actually I’m not too sure that I wasn’t. He didn’t like the fact that he didn’t have that leg, but I would have relished it.
Does it accompany any sexual desires?
It’s not sexual — I don’t get off thinking about myself without a leg. The only sexual connection I can think of is that I have wondered what it would be like having sex with that leg missing.
Does that thought excite you?
No. Actually, there is one way that sex is involved. I have these early morning episodes, almost panic attacks, and one of the things that relieves them is for me to roll over to my wife and do a little hugging and kissing and maybe make love. It’s one of the only times I’m relieved of the thoughts.
What was your childhood like? Did you ever experience any trauma or unsettling events?
I’m an only child and I grew up with my parents who worked together. My dad was a builder and my mom would help him with his business. They lived 70 years together almost every day. I was around loving people.
I didn’t have much pressure, but my parents were firm about certain morals: Don’t lie, don’t steal, don’t cheat on your taxes or your wife. However, I’ve had a lot of stress in my adult life. I went through a divorce. I’ve raised many kids, two of whom my current wife took in as foster children. Two of our kids are not with us anymore. One was killed in a motorcycle accident and another died suddenly of heart failure. My oldest had a bit of a problem with drugs, so we ended up raising the kids. Also, I’m an only child, so I was the sole caregiver for my parents for the last few years of their life. I’ve lived through a lot.
It was less of a problem when I was a young teen — I was distracted by cars and girls. When I was approaching 30, following my divorce, I started to think I was going crazy. It bothered me more and more, and then one day I thought I should just get a saw and chop my leg off.
Do you spend much time thinking about having it removed?
I’ve worked around heavy equipment my whole life, so I’ve thought about smashing it. I’ve thought about sawing it. I’ve made quite serious physical preparations at least three times. I recently got to the point I just couldn’t stand it anymore and thought about telling my doctor what I was planning and to expect me to be in the parking lot of a hospital. I figured I’d put a bunch of rope around it real tight and take a saw and chop it off. That way I’d get immediate medical help. I would also saw the leg into two or three pieces so they couldn’t put it back on.
There 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 easily remove the stump. I was standing on the side of the hill with this chainsaw in my hand and I just thought, Oh, it would be so easy. The temptation was very real.
It seems like a real tension: You are so strong and physical and capable, so if you were to remove your leg, it would really alter your quality of life.
It would. However, I’ve done so much peg leg research that I know how to walk on one. But it’s true, I don’t want to be handicapped. I’m very active. I ski. I use heavy equipment. My wife and I love to dance ‘50s swing together. I have many acres of property to take care of. I’m into classic cars and I have four of them, two of which are stick shift. I will most likely die with two feet, mainly because of my family, my responsibilities, and my wife. If I only had myself to consider, I’d probably do it.
But you didn’t tell your first wife?
No. I knew she wasn’t a very understanding person and I lived with it better then. I put all my thoughts into building my business rather than cutting off my leg. During my divorce was the first time I made a serious plan to stage an accident and just do it.
What did you 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 pain. I didn’t want to die. I’m not that unhappy a person.
How close were you?
I guess I was about ten seconds away.
How did you feel in the moments leading up to it?
My heart was racing and I was repeating in my head I have to do this I have to do this I have to do this. Then I thought No, I’m not going to do this now. I had put a bungee cord around the leg to act as a tourniquet and I wondered if it could really control the bleeding.
Do you regret not going through with it?
It’s my biggest regret, ever. It would all be gone by now and I’d have had enough time to get used to living without my leg. If it was what my psyche really needed, it would have been accomplished.
How often do you think about your leg?
It’s the first thing I think about every single day, and then the thoughts come hourly. I sleep about five hours each night. I used to jump up to try and get it out of my mind, but now I just lay there and sometimes I’ll fall into a sort of half sleep and have a dream and actually convince myself that it’s not there only to wake up and find out that it is, and that’s terribly stressful.
How did you find out that your condition has a name?
I lived for about 50 years thinking I was the only person who has these thoughts. I have some problems with my left foot — pinched nerves and plantar fasciitis. About 15 years ago, a podiatrist was injecting my foot with cortisone to relieve the pain. I joked and I said, “why don’t you just cut that sucker off?” I followed up asking if anybody ever actually did that. She said, “You don’t have apotemnophilia, do you?” That was the first time I’d ever heard the word. I wrote it down on a piece of paper and tucked it away. About eight years ago, I got it out of my dresser drawer and though I was barely able to use a computer, I looked it up and I thought, You gotta be kidding me. There’s actually other people who feel this way. Even though I don’t have apotemnophilia, I learned about BIID.
Did you seek therapy?
No, but I did I try to get help after the dump truck incident. I went to my family doctor, but he freaked out and said that it’s a sexual disorder that had cranked up because I was single — everyone thought it was a sexual thing back then. He sent me to talk to another 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 average psychologist doesn’t know anything about it. I wished I hadn’t told anyone.
How did you end up telling your wife?
Several years ago, I got to a point where I couldn’t cope and I broke down and told her. She suspected there was a problem because I have vivid dreams and I talk in my sleep. Whenever I see myself in a dream I don’t have my left leg. I regularly wake up 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, so I think she thought I had a fear of losing my leg. She’s a sweetheart, but she could hardly deal with it — she thought I was kidding. It was horrible; I felt like someone lifted an animal off my shoulders only to realize that she couldn’t accept it. And of course, she couldn’t. I seemed like an idiot.
Did she change her mind about it after she’d had time to process what she’d learned?
I have a briefcase full of material from the internet. She read it all and said, “Well, I really want you to be happy,” but a few weeks after that she said she just couldn’t handle it. She’s come around a little bit. I understand why she doesn’t like to hear about it, but I’ve come to realize that it helps to talk. But it upsets her, so I refrain from discussing it.
Was there a change in how you felt after you told your wife?
It had been bottled up inside me for so long so it was a release. But the last thing I want to do is alienate myself from the love of my life. And because she wasn’t very understanding when I first told her — what normal person would be? — I was worried about that. Following one of our conversations, she cried and told me that if I cut it off she’d divorce me. She later said she wouldn’t.
Have you ever tried to numb it so you can’t feel it?
No, but I’ve heard that in the U.K. the popular thing to do is put on a tourniquet and place your leg it in a bucket of dry ice so it’s dead and has to be cut off. I could never do that — it seems like it would be awful painful. It sounds stupid, but it’s a very visual thing, so when I can’t see it, I’m not so bothered.
Are you a visual person?
Very much so. My wife and I like people watching. I like to look at the view of my property from my house. I like to look at my cars and, this might be a little tacky, I like to keep the lights on when I’m making love to my wife; I want to see her.
Do you do things to avoid looking at your leg?
My wife and I have a double recliner and in the evenings we sit and watch TV. Most of the time I have my leg down the crack between the two footrests because I get so irritated when I see it.
Have there been especially stressful moments where it’s worse than other times? What about when you 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 distraction — that’s when I think about doing something to “fix the problem.”
About a year ago, I thought, I have 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 called the Gatekeeper who could offer me a surgical option if that was what I was interested in.
Yes. He’s a man who also has this problem. 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 will fix your life.
But there are some people I have exchanged emails with, via an online group. All of them have had left leg amputations. They still obsess 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 it would all go away and I’d be a normal person, with a fake leg. That’s the difference between me and these other sufferers. Having the leg gone but still being plagued by these thoughts would make my life worse. Also, I saw photos of one of the amputations he organized and it wasn’t great.
Does that mean you have an ideal stump in mind?
Oh yes, I even know what kind of closure I would have. There’s two or three different methods, they use two or three different flaps to cover the bone on the end and there’s a type where it’s kind of closed like the scar would be right 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 problems. His stump was absolutely pristine, very clean and tapered.
How do you feel when you see amputees?
Envious, especially if it’s a left leg. But if I see someone with their arm missing I think, Oh my gosh, you poor thing! I wouldn’t want to lose my right leg, either.
If you did have it removed, would you want a wheelchair or a prosthetic leg?
The peg leg thing with no foot has always enthused me. Dr. First suggested that it’s because it doesn’t resemble a real leg, but it’s something I can walk on. I’d like to have three prosthetic legs, one for everyday use, 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 decorated it with stickers and other racing memorabilia.
Does researching amputation calm you down or does it make you feel anxious?
It’s exciting. It can be a little disturbing and it can be a good feeling; it’s like an adrenaline rush.
What’s the worst thing about this condition?
It’s something I can’t fix. I repair my own cars. I’m building a classic car right now, from scratch. If something’s broken, I want to glue it back together. And I’m responsible for a very large family. I’m a fixer.
Do you think you’ll ever actually do it?
If my wife said, “Go ahead and do it if it will make you happy,” and if I was sure she’d be happy with me doing it, and that I’d be satisfied afterwards, I’d go ahead and do it. But now that I’m learning more about people who have done it but not had any relief from the thoughts, I have more doubts.
Ten years ago, I was just waiting to do it when I retired, thinking I won’t be as busy — I’ll just get that thing off and I’ll be happy the rest of my life. But it doesn’t look like it’s going to work out that way. I guess I do believe that living with only one leg could not possibly be as bad as the everyday torment that this condition causes. The medical community needs to know that.
The Gatekeeper told me a story. He was once at a convention for BIID people and someone came up to him and asked if he could take a pill that would make it go away, would he? And he said, “I don’t think so, because this is who I am.” The difference between us is I would take it. Not necessarily for myself, because in a way this condition is who I am. I would take it for a better life. I would take it for my wife. I would take it for my family.
This interview has been edited.