My friend “Jason” (not his real name) is one of thousands of amputees living with a huge secret. Years ago, after a lifetime of anguish due to having an extra hand — essentially a birth defect in his opinion — he took the radical step of amputating this hand just above the wrist. He’s never regretted his action, and feels that now his body is “right”. Other than his former BIID (“Body Integrity Identity Disorder”) affectation, he’s completely normal, and now that he’s surgically corrected himself his life has improved drastically. Jason was kind enough to speak with me candidly about his experiences.
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BME: Tell me a little about yourself and your life — how should I introduce you?
Let me be blunt — I staged an accident. Nobody’s doubting it, and my friends and family, so many folks, came together for me back then, raised a lotta money, prayed, and said such sweet, loving things. There’s no way I want enough details to get out there that they could connect up me with my ‘accident’, with the person you’re interviewing, who’s voluntary.
BME: I understand completely — what was the “accident” you used to remove your hand?
I don’t want to be hugely specific, but I used a very sharp power tool, after having tried out different methods of crushing and cutting. I know first aid so I was able to stop the bleeding with pressure, but I was worried that I could pass out and not call for help and lose too much blood. No worries, though, I guess I’m in good enough shape that I didn’t even feel dizzy.
My goal was to get the job done with no hope of reconstruction or re-attachment, and I wanted some method that I could actually bring myself to do. I did experiments with animal legs I got from a butcher. It’s lucky I thought of that, because some of my early attempts were total fuck ups and would have ended up with a damaged hand which might have had to undergo years of painful reconstruction, and worse yet, no amputation.
BME: How was the aftercare and healing?
I had some shooting pains, almost like electric shocks in the end of my stump at first, as the cut nerves tried to figure out what to report. That was gone in a couple months, though for some people it goes on for years. Aside from that, my stump was completely healed when they took the bandage off a couple weeks later, with just a faint red line across the scar that went away in a couple months. In some parts it was quite sensitive, with strange mis-interpretations of sensations — like when I touched something cold, it got back to my brain as the sensation of burning. One real weird sensation was to run my fingertip from the top to the bottom of my stump, across the scar. It felt like I was running my fingertip right through my arm! Now it mostly feels like it ends where it ends. I can feel things with it, but nowhere as precisely as with my fingertips. A huge surprise at first was how much lighter my forearm was. Maybe it was because of that, or maybe because my brain didn’t ever completely accept that I had a right hand in the first place, but it didn’t take long to accept that I couldn’t reach out and grab stuff, and instead had to pinch things between my stump and my body, or a table or something.
BME: Can you still sense the missing hand? On the whole, how do you like it?
I can sort of sense my fingers, and can imagine that they’re moving, but I’m also really aware of the end of my stump — about 5″ below my elbow — and what I can hold with it, and how far it will reach. I feel like my body is correct at last, and that’s a way cool feeling. I’ve adapted to doing everything one-handed — not that I can do everything. For a while, my tennis game was off since I had to do everything left-handed, and my balance was a little screwy. Skateboarding took a bit of adapting. Running, swimming, no problem. I can’t play that cool jazzy sax anymore… that hurt… but I’m getting into hand drumming. Strange, but it works! I guess there’s a period of fighting it, but then your body just goes, “Hey, this is me now… what a groove”.
BME: Is there anything you’d do differently if you were to do it again?
No, it came off better than I ever imagined.
BME: Hahaha, “came off,” ok… Will you do any more amputations?
No, my body is just right now.
BME: We’ve touched on it, but I guess now the big question — “why”?
I’m one of those body-integrity-disorder (BIID) dudes. As long as I can remember, having two hands was a defect in my body — something that was not meant to be. For me philosophically, it’s totally different from body mods, which I also have. I don’t think I had any choice. My right hand just didn’t belong to my body. As a little kid, I soon learned that I was the odd one out, and that amputation was a bad thing. My parents reprimanded me for staring at amputations, but it was totally mesmerizing for me. Somehow I made it through high school, with hormones and peer pressure doing their best to mask my feelings. In college, I met a wonderful woman, and our love kept my thoughts of amputation at bay at first, but the need grew and grew. I don’t know how I ever made it through to getting my Master’s. My mind was more and more consumed, so that sometimes I would even blurt out an embarrassing word, like “stump” or “hook”. I don’t think she really grasped what was going down, but my lover couldn’t take my distraction, and we parted company very sadly.
That totally shook me up. It was way clear that I had to get rid of my hand so that I could live. I began doing research and experiments right off. Maybe that’s not exactly what the old college would think of as the best application for scientific method, but it paid off! Now that I’m free of my hand, I’m loving life, and have opened a cool little business with a partner who, it turns out, is none other than my lover from college. I still haven’t told her the truth about my “accident”, but she loves the change that’s come over me, and best of all, she loves being my lover again.
BME: Do you think you’ll ever tell her, or is this a secret that you’ll likely never tell anyone in your immediate life? It’s certainly something huge to hide!
It’s huge to hide, but for now, it’s huger to tell! Also, the “accident” has passed, so now the focus has changed to how I live with it. People perceive, rightly, that I don’t groove that much on talking about how it happened.
BME: It’s a very big secret to keep so deep “in the closet”.
Yeah, it’s a biggie. For sure it’s not rational to want to cut off your arm or leg. There’s no argument you can make that life will be easier, or that you’ll be more capable doing anything. Even though a hook can do some things that a bare hand can’t, a hand holding a tool can always do everything a hook can, and so much more. Even though you can run in prosthetic legs that give you a mechanical advantage, you can’t compete with those.
So it’s irrational, but is it insane? It’s true that a major amp makes your body less functional, so how can it be sane to do it? For me, I think the answer is in what I was going through before my amp. I was so consumed by the drive to lose my hand that I could scarcely function.
Now I’ve totally lost the desire to amputate anything. I’m totally used to doing things with a hand and a stump. It’s true I need to ask for help like once a day, that I’m a bit slower at dish washing, keyboarding, and stuff like that, but is that worse than being seriously overweight, or being short of breath from smoking, or even trying to walk in stiletto heels?
All that said, though, there’s no way that society is ready to accept me amping my hand just to get piece of mind. Like I said, I picked up real early on the feelings about amps, and they were all negative. Even little kids can sense taboos and know when to shut them up inside. I know that for me, hiding that away caused me to hide other feelings and emotions too, as if letting myself go in other ways would let out my big secret. From all I’ve read and experienced, amputating the unwanted part usually solves the BIID sufferer’s problem, and lets them get on with life. I’m certainly doing a lot better in living — taking care of relationships, doing well in my work, getting into my community — all stuff that totally got neglected before.
BME: Do you think that the medical system should offer amputation as a service, perhaps with the same type of screening as a sex change? And do you feel any guilt about “taking advantage of” the medical system, or your family and friends, who you mentioned were very supportive? Finally, do you think your life would have continued to spiral out of control if you hadn’t taken this drastic action?
I super feel like this “having a spare limb” is a definite body deformity, which needs to be cured by surgery to allow the BIID person to lead a normal life. It’s sort of like people who are born with a vestigial tail or a six-fingered hand. I totally understand that almost everyone would think that’s totally backwards from reality, that they would see our un-amped bodies as being normal, not needing a “cure” by amputation. Given that viewpoint, of course, there’s no justification for using public resources, but considering the mental health and, yes, increased capability of a healthy amputee over a tormented BIID sufferer, it’s more justifiable. I didn’t use any public funds, but a friend did, and I think that was justified.
That guilt is a whole nother thing. Yeah, there’s a lot of places guilt can get into all this. Guilt about not being straight-up about having the feelings of needing the amp all through your life, about falsifying the details of the “accident”, about acting believably upset about the amp, and then hiding the BIID and true history afterwards. Guilt about not coming out publicly to demand humane treatment for BIID. This can get real gut-wrenching real fast. Luckily there’s other BIID people on the Internet who share my reality. Without them, this would all be a lot harder. Thanks, dudes.
If I hadn’t gotten amped, I can’t imagine any way my life would have not spiraled out of control without a drug-induced stupor…something else that woulda been a huge drain on society. Rather than that I’m a healthy, active dude, engaged in my community, who happens to be an amputee. It that so bad?
BME: Not at all… And I have to wonder how many amputees share your story. I’ve interviewed and met quite a lot of people who are living with the same secret.
For most of my life I thought I was the only one, but I’ve met quite a few since I made my amp happen. We’re a lonely, isolated company, though.
BME: I think something that comes across quite clearly is that even though this was and incredibly drastic action to take, that this is something you were sure about for a very, very long time. Did you go through periods of self doubt, or even seek counseling?
That’s a really strange thing — thinking back, I don’t ever remember any self-doubt. There were times of my rational self saying that I had to keep down those ideas cuz I couldn’t function without that hand. So I always knew rationally that it didn’t make sense, but I never remember feeling that it was right for me to have that hand either. I was too in the closet to ever admit that to a counselor. Other voluntary amps I’ve talked to are the same. We would do anything to avoid being “talked out of” or “cured” of our need to lose that part. Well, I guess it kinda crept up on me, cuz I was mentally ready to focus completely on doing it after my lover had enough of my distraction.
BME: You mentioned you have “regular” body modification as well. How is getting those — which I see as “enhancing” the body — different for you from what you did — which I see as “normalizing” the body?
When I’ve gotten body mods, they’re always to make my body more outstanding. I guess there’s an element of “in your face-ness” in there. I was way into the punk scene for a while. Having gauged out facial stuff and some gothy tats in obvious places helps put that across. Usually, I want to keep that exposed, wearing shorts in cold weather, and so on. I think it gives out a statement about where I think society has sunken to, and that I’m not going to let things just cruise in that rut.
My amp, though, is totally different. At first, I was way weirded out by people staring. I tried to hide it by tucking my sleeve in a pocket. I was totally scared about meeting up with someone I knew who hadn’t found out yet. I actually ran and hid more than once. Even though it felt way cool to be in my right body, I’d hidden that drive for so long that the guilty feelings took a while to go away. Putting my stump right out there was huge for me. I actually met a voluntary amp dude on the Internet who totally worked through that with me, till I came to see how wonderful it is that I look the way I feel. I still get nervous about doing things with my stump in public, but that’s improving. Even though having an amputation makes me feel normal, I need to accept that most people don’t feel comfortable with it, feeling unsure about what to do, thinking it’s ugly, worrying about how hard it is for me and such. Usually, I just try to overpower that with humor or showing my excitement for life, but sometimes I’m not up for that, and those feelings flow.
BME: In terms of how it changes your life, what are some of the hardships that it’s induced, that while they’ve been worth it for you, would likely not be to someone who’s not in this for the same reasons? Why should someone NOT do this?
I guess the hugest thing is that it’s not reversible. You can’t decide you don’t like it later and have it cured by laser surgery or something. While it is possible to transplant body parts, that’s a huge thing, requiring lots of money and a lot of time to get a donor, drugs, and all that. I would never advise anyone to get a voluntary amputation. If I did, and they found out later that it wasn’t as cool as they thought, how could they not blame me? Even if it seems like it would be super cool to have that sensation, that look, and that whole experience of adapting to the handicap, seeing people’s reactions, and so on, the novelty of that wears off in like a year. After that, you’ve learned how to do all the stuff you need to for daily life, or ways to get others to help, or what to give up on; your friends are used to your way of doing things, so they hardly notice. Then you have the rest of your life to live as an amputee, with all the baggage that brings, and no more thrills.
For people with BIID, it’s totally different. The things that are negative about having an amputated limb are the normal things that we should have been living with all along. We don’t need to be advised about whether to get an amputation or not, whether it’s cool or not, how it will feel, how people will react or anything else. I would never put anyone on the spot by asking them to counsel me about anything so life-changing.
I’ve so forgotten how I did things before my amputation, that it feels like I never hand that hand. In a weird way, that makes me a lot more capable… I don’t spend time trying to figure out how I’ll do a new thing one-handedly, I just start doing it, just like all you two-handed people would.
BME: Any last things we should cover?
I’m very concerned that I’ve made amputation seem right for someone wanting an extreme body mod, cuz it is a major handicap, something that could totally fuck up a person’s life, unless they have the right outlook. If someone does this without much consideration they will have a lotta regrets soon after.
BME: Agreed. Thanks for talking to me about this — if someone wants to get in touch with you, is there a way to do that?
They can write me at [email protected].
For stories and pictures on voluntary amputation,