Amputees by choice. How Russian “voluntary amputees”—people who want to lose a limb—live. OK position on the bed after surgery

Prosthetics for children with amputated limbs presents particular difficulties due to the fact that the formation of their stump is influenced by continued growth, high tissue plasticity, as well as incomplete development of motor and, importantly, mental functions. All this is associated with the emergence of a number of problems and, in particular, defects and painful conditions of the stump, forcing one to resort to additional, in some cases multiple, surgical interventions. A characteristic feature of the stump in young patients is its developmental delay due to resection of the distal growth zone and the lack of normal, full function of the limb. In addition, the sharpened end of the bone often grows (due to the resorption process) into the surrounding soft tissue, up to perforation of the skin. This prevents normal prosthetics and causes repeated stump reamputations in children.

Due to the more rapid growth of the radius and fibula, fibrous as well as bone fusions with paired, parallel bones (the ulna or tibia, respectively) may occur, which ultimately leads to varus (O-shaped) or valgus (X-shaped) deformation of the stumps of the leg and forearm and recurvation of the joints. Subluxations and dislocations often occur in the shoulder joint after a child has undergone high amputation of the shoulder, and subluxations in the proximal tibiofibular joint and in the knee joint after amputation of the lower leg. Phantom pain, osteophytes, and painful neuromas are much less common in children compared to adults.

In order to reduce the intensity of the development of pathological processes in the stump, when performing amputation in children, the following requirements must be met: firstly, the bone growth zones, the bone itself and the soft tissues of the affected limb should be preserved as much as possible; secondly, it is necessary to think about using, along with traditional osteo-, fascio- and myoplastic methods, atypical approaches to amputation; thirdly, use skin grafting in case of skin deficiency.

In fact, maximum saving of the length of the bone lever and, of course, the soft tissues of the stump in this situation is one of the main conditions for creating a functional limb stump, taking into account the upcoming long-term use of the prosthesis. In children, as a rule, based on the above requirements, doctors try to perform articulation in the joints without cutting off the growth zone, including the articular cartilage of the tubular bones. Since bone growth occurs at the expense of the basal layer of articular cartilage, in case of amputations at the level of the hand or foot, it is not excised if possible, thus preserving the entire joint and providing the prerequisites for the normal growth of the remaining bones.

In order to prevent growth retardation of the stump in situations where a limb is amputated according to Pirogov or according to Gritti, bone truncation is done distal to the level of the growth cartilage. Keeping in mind the rapid growth of bones, whenever possible, it is recommended to preserve the excess soft tissue present there at the end of the stump or to create a supply of it specifically by lowering skin-cellular flaps from the upper proximal parts of the stump.

Ksenia Shishkova for Meduza

The Western medical term “Body integrity identity disorder” (BIID) describes people who want to get rid of their limbs - they are also called voluntary amputees. Those with this disorder perceive the limb as a foreign object; amputation for them is a way to feel “whole”; Often these people deliberately harm themselves in order to get rid of a leg or arm. Scientists began to study BIID only in the last 15 years and only in Western countries - however, there are voluntary amputees in Russia, where this problem is not being studied in any way. Meduza correspondent Sasha Sulim talks about how their lives work.

When Denis (name changed at the request of the hero) was four years old, he had a strange dream, which he still remembers. Dressed in black leather, he knelt in front of a strange woman, and she beat him with all her might with a whip; but the main thing is that in his dream Denis had no legs. That night the boy woke up in pain from the blows and intense arousal from the sight of his stumps - he did not realize his sexual nature until many years later.

As a teenager, while his parents were at work, Denis loved to pretend to be disabled: he tied his leg, made a prosthesis, walked on crutches around his apartment in St. Petersburg, fantasized about how and under what circumstances he could lose a limb. This game caused sexual arousal in the boy, which combined both the attraction to people without legs and the pleasure of realizing his own helplessness. It was then that the first thoughts appeared about losing my limbs for real.

As a child, 45-year-old Igor from Kirov (name and city changed at the request of the hero), who grew up in an ordinary Soviet family, also realized his desires: his father worked at a factory, his mother worked in a hospital. One day, when he was ten, the boy climbed a tree: “The feeling of emptiness under my feet gave me an orgasm for the first time in my life. I think my father even noticed something, because he asked: weren’t you, by any chance, pleased? But, of course, I didn’t confess to him.”

Igor still does not admit to his family and friends that he is interested in people with amputated legs. “If my wife finds out about this, I can’t imagine what I’ll do with myself. I don’t think I’ll survive this,” he says. He calls his attraction a “demonic mark” that he cannot get rid of. Igor fights with it, going to work (he has his own shoe repair business) or his favorite hobby, hunting. According to him, even just watching animals distracts him from obsessive thoughts. “Sometimes [people] sit for hours watching ducks or wild boars. I can’t do this, I need everything to change, I can’t sit in one place,” says Igor. “Giving in to temptation and losing a leg means losing the opportunity to do what you love and turning into a burden for your own family.”

Obstacle on the path to happiness

For the first time, a disorder associated with attraction to people without limbs was described by a psychiatrist and one of the founders of sexology, Richard von Krafft-Ebing, in his work “Sexual Psychopathy,” published in 1906. The term “Body Integrity Disorder” (BIID) appeared about a hundred years later, first used by Columbia University clinical psychiatry professor Michael Furst in his 2004 study on amputation: paraphilia, psychosis, or a new type of personality disorder.

Eight years later, in 2012, Furst and his colleague Karl Fischer, an assistant professor of clinical psychiatry at Columbia University, published another article on a rare disorder: “Body Integrity Syndrome: A Persistent Desire to Become Disabled.” In it, scientists propose a definition: the syndrome of violation of the integrity of perception of one's own body is a little-studied condition in which the physical picture of the body does not correspond to how a person perceives it psychologically.

In a conversation with Meduza, Furst called this medical phenomenon extremely rare, but at the same time widespread enough not to doubt its existence. “In the time I have been studying this disorder, I have spoken with approximately 150 patients suffering from BIID. But I’m sure there are thousands and thousands of them in the world,” says Furst, noting that the development of the Internet and social networks greatly facilitated both his research and the lives of his patients. - Previously, people suffering from BIID thought they were the only ones in the world. They were very lonely and suffered madly from their difference from others. Knowing that you are not alone can even save a life in some cases.”

For his first study, published in 2004 in the journal Psychological Medicine, Furst spoke with 52 people who said they dreamed of amputating one or both limbs. A scientist found them on specialized forums; all interviews were conducted by telephone under the condition of anonymity. The vast majority of these people were men (only four were women - and one was transgender). Nine people admitted that they had already amputated a leg or arm, and six had undergone the operation themselves using life-threatening methods - using a power saw or dry ice, which causes tissue death. The three managed to persuade the doctor to amputate their healthy limb. Several people said that after the operation they felt much better and got rid of obsessive behavior; None of the respondents had other psychiatric disorders (however, as Furst points out, the syndrome he identified can cause severe depression). All 52 people named the goal of voluntary amputation as the desire to find their own identity.

A more precise quantitative analysis, according to Furst, is unlikely to be possible in the near future. “You can’t just go around 20 or 200 thousand people and ask: Do you want to amputate something?” - he explains.

Another scientific work dedicated to “voluntary amputees” was published in 2012 by several specialists from the University of Amsterdam. They interviewed 54 people who admitted that they suffered from BIID and wanted to amputate or paralyze their limbs in order to feel like “full people” and find inner harmony with their bodies.

The scientists communicated with most of the survey participants anonymously and only online, and collected data using detailed questionnaires; only five people agreed to meet with the scientists in person. The authors of the article note that in order to include as many “voluntary amputees” in the study as possible, they had to abandon the idea of offline communication, physical examination, and even telephone conversations. As scientists write, people with such a rare disorder have great difficulty making contact, fearing that their identity may be revealed. In such conditions, it is almost impossible to verify the sincerity of the research subjects and the veracity of their answers. One way or another, each of the respondents (as in the case of Furst's study, the vast majority were men) associated their first fantasies about amputation with early childhood; every second person experienced sexual arousal when they imagined that one day they would become an “amputee.” The University of Amsterdam did not talk to Meduza, citing the excessive interest of journalists in their work.

One of the main goals of the Dutch was to ensure that the syndrome was recognized by the medical community - and the disorder would be included in all official medical classifications. With a proposal to add BIID to the list of mental and behavioral disorders in new version International Classification of Diseases (ICD-11) in last years Professor Furst also speaks. Work on new classification should be completed in 2018 - and in its draft version there is a mention of such a syndrome. In total, as of January 2017, 7,186 amendments have already been proposed to ICD-11, two of which relate to mental disorders. They also tried to include BIID in the American classification of mental disorders DSM-5, which was last updated in 2013, but so far it has not worked

Psychotherapist, Doctor of Medical Sciences, leading researcher at the Serbsky Center Lev Perezhogin points out that in the current International Classification of Diseases (ICD-10) there is a section “Other disorders of habits and desires,” which, in particular, describes behavioral disorders that “ characterized by repeated actions that do not have a clearly expressed rational motivation, cannot be controlled and usually cause harm to the patient himself and others.” “If there were a person, there would be an article,” Perezhogin sneers, admitting that such cases have been studied very little - and therefore are described in very general terms.

In the 2000s, journalists also began to become interested in BIID. In 2003, the Los Angeles Film Festival screened the documentary Whole, in which the main characters talked about how and why they tried to get rid of their limbs. Three years later, one of the largest American television channels, ABC, posted on its website material about three voluntary amputees. One of them sat in his own car for six hours, with his feet in dry ice, and then independently got to the nearest hospital, using the manual controls that he had previously installed on the car (this is used by people with disabilities who cannot control the car with their feet). After the operation - he eventually had both legs amputated - the obsessions disappeared, but, as the man admitted to reporters, not a day goes by without him regretting what he did. Another heroine twice unsuccessfully tried to amputate her legs, and the third almost decided to undergo an illegal operation in the Philippines: local doctors offered to cut off his healthy leg for 10 thousand dollars.

Reports with similar stories have also appeared in recent years on the Fox News channel, in the British tabloids Mirror and Daily Mail, in the American Daily Star and New York Post. All of them featured people who dreamed of damaging their limbs - and who felt relief when they succeeded; The New York Post even cited an example from the 18th century, when an Englishman who came to France demanded that a doctor amputate his leg. When the doctor refused, the man shot himself in the limb and simply forced the medic to finish what he started. Returning home, he sent the doctor money and a letter in which he explained that his leg was an obstacle to his path to happiness.

As far as Meduza knows, no BIID studies have been conducted in Russia. The concept of the syndrome of violation of the integrity of perception of one's own body in Russian is found almost only in translated articles (with rare exceptions); neither scientists nor doctors use it.

Amputi, devoti and vannabi

“Voluntary amputees” find each other in closed groups and forums, and their communication is replete with slang borrowed from English: amputees (those who have already lost limbs), wannabi (those who dream of amputation), devoti (those who is sexually attracted to amputees). For this material, Meduza spoke with several dozen subscribers of VKontakte communities that are in one way or another related to the topic of amputations.

However, as in the case of anonymous scientific research, it is often impossible to verify how serious users are when they talk about their aspirations for amputation. Activists of various thematic groups, who often take surnames like Vannabko or Vannabov on social networks, sometimes write about amputations even too openly. Their pages are filled with photographs of semi- and naked people without arms and/or legs, often of a pornographic nature. When communicating with a Meduza correspondent, most of them stopped correspondence when they were asked to change the format of the conversation - for example, to call. Meduza repeatedly spoke with the main characters of the material - Denis and Igor - by phone and Skype.

Now, when he is already over forty, Denis explains his childhood experiences with the strong impression of an unusual meeting: one day, when he was still very young, a man with a wooden leg came to their apartment in the center of Leningrad. “The sight of this man scared me and interested me at the same time. That’s when the eroticization of people with disabilities occurred - this is one of the protective mechanisms of our psyche,” explains the man, who became so interested in psychology that he studied it at the university, and for the last 15 years has been working in his specialty in the USA. “Since then I have dreamed of having my leg or both amputated.”

According to Denis, he spent years wondering if he was crazy - and eventually came to the conclusion that he was not. He calls the disorder his “peculiarity” - and explains: “Bannaby psychotherapy is necessary. But if a psychotherapist believes that he can rid a person of the desire to amputate, then he is not a professional and has no idea what he is talking about. It's like convincing a black person that he is white. This is probably possible, the question is how healthy this position is.” Therapy, according to the man, is needed in order to learn to live with BIID - but it still feels like life in prison. Liberation would be amputation, which the man is not yet ready to undergo. “There are, of course, limiting factors. Firstly, parents,” he explains. “They don’t know about my desire, I protect them.”

Other obstacles are of a purely technical nature. "If my Insurance Company If he finds out that the amputation was not done for medical reasons, but at my request, he will sue me, and I will be doomed to poverty and ruin,” says Denis. “And the chances of finding a doctor who agrees to do it are also zero.”

Several years ago, Denis went to Europe with the hope that he could find the right specialist. At that moment it seemed to him that he was one step away from his dream. “It was a terrible period of my life, I really hoped that they would help me, but this never happened,” the man recalls. - After all this, I was ready to build a guillotine. If anyone had helped me with this then, I would have already lost my leg.” The instinct of self-preservation prevented me from finishing the job on my own: “I got used to it, learned to live with it,” says Denis, who calls himself “a slave to his desire.”

Dream operation

“Surgery is a drastic measure,” Furst says. “Of course, the question of ethics immediately arises here.” At the same time, today amputation operations are, according to researchers, perhaps the only examples of effective treatment. Ferst himself supports this method only as a last resort: if nothing else helps - and if it is reliably established that the patient is aware of his actions. However, according to the scientist, it is impossible to exclude the possibility that a person will regret what he did.

By Russian legislation The court may recognize amputation without medical indications as intentional infliction of harm to health - punishable by up to eight years in prison. However, in groups dedicated to amputations, you can often find proposals with a similar wording: “A full range of services. Expensive, but reliable, legal and confidential." The author of one of these advertisements - he introduced himself as Viktor from Rostov - says that he himself is not going to cut off anything for anyone, but he can advise in detail and for money on all issues related to amputation. Victor once studied at the Faculty of Psychology; his thesis was on his attraction to “unconventional girls”: “It’s easy to write when the patient is yourself,” he explains. Then he met his first vannabi and realized that he could make money on this topic.

According to Victor, there are many scammers among his colleagues. “I immediately tell [clients] that if they come across an ad here [on VKontakte] that says: “Give me money and we’ll cut off your leg,” I don’t advise them to write it - it’s either swindlers or a crime.” More realistic options, according to Victor, are to feign terrible pain in the leg, or better yet, to inflict at least a minor injury on yourself. “The most workable scheme is to find a surgeon and agree with him (for money or a bottle of cognac) that on a certain day you will be brought to him with a leg injury incompatible with life, and he will amputate it in a pre-agreed place,” he continues, explaining that vannabis usually know exactly where they need to cut. - But the person still has to receive this injury himself. Doctors risk losing not only their licenses, but also going to prison.”

One of Meduza’s interlocutors, Tamara, a resident of Blagoveshchensk, acted approximately this way (the name and city have been changed at the request of the heroine). Five years ago, her left leg was amputated. A 35-year-old woman who works as a hairdresser has been pursuing this operation for two decades: first she independently removed the phalanges of her fingers, then she received a minor injury, introduced an infection into the wound and achieved amputation for medical reasons. As she recalls now, after the operation she experienced “relief” and “found herself.” Now she continues to work in her profession from home, is raising a twelve-year-old daughter (Tamara’s husband left her after the amputation) - and says that she has already gotten used to crutches, which she finds “very comfortable” to move around on.

The only known case of a doctor performing formal amputations of healthy limbs on patients with BIID was recorded in 2000 in the UK. A surgeon at Scotland's Royal Falkirk Infirmary, Dr. Robert Smith, published a monograph, Questions, Answers and Recommendations on Voluntary Amputation, in which he reported that he had performed two amputations of healthy limbs on his patients. Smith stated that extreme measures he had to go because of the risk that patients might self-harm - and noted that he first checked the mental health of his patients and ensured that they were not sexually motivated. He refused patients who wanted amputation solely because of their sexual fantasies. According to Smith, after the operation his clients felt much better - however, when the public learned about the non-standard procedure, he was forced to stop working, despite the steady demand for such surgical interventions.

Psychoanalyst Nadezhda Kuzmina notes that the current consensus on voluntary amputations may change - after all, not so long ago, plastic surgery was also “treated with skepticism.” “A person of the 21st century has an extremely complex relationship with his body, and fantasies about amputation can be one of the forms of rejection of his physicality,” argues Kuzmina.

Coming out of the shadows

Several years ago, Denis, as part of a scientific internship at a European research center, studied the medical histories of 150 transgender people. “No matter how strange it may sound now, transgender people made me feel disgusted and sick. And it embarrassed me terribly,” the man recalls. - But I left the internship with a feeling of admiration and deep respect for these people: these are truly strong individuals whose lives are a real tragedy. But the Vannabis also experience the same thing. I believe that we deserve to be treated with the same understanding as transgender people.”

Psychotherapist Perezhogin considers such a comparison incorrect, pointing out that not all transsexuals undergo surgical intervention, limiting themselves to changing their passport. And even if surgical gender reassignment is performed, such an operation does not cause any harm to a person. “In Russia, in the case of transgender people, a medical examination is necessary to make sure that if they change gender, they will be able to adapt to society in a new capacity,” explains Perezhogin. - What will be the adaptive effect of amputation for Vannabi? After all, in essence, their life will not change in any way - except for the fact that they will have to walk with a prosthesis.”

Michael Furst, on the other hand, agrees with Denis's analogy. “In both cases, a person feels very uncomfortable in his body: some are embarrassed by the genitals and secondary sexual characteristics, others are embarrassed by four healthy limbs. Both transsexuality and BIID first appear in childhood or adolescence, when a person begins to portray the desired ideal by dressing as the opposite sex or tying up limbs, the scientist explains. “To achieve that same ideal, both require surgical intervention, which is not an end in itself, but a medicine against the irresistible desire to change gender or lose a limb.”

Unlike Denis, Igor did not talk about his desire for amputation with any of his loved ones - he only discussed it on the Internet with strangers, but people close in passion. “I’m afraid that the doctor will think I’m crazy,” the man explains. - I even turned to God, prayed, took an oath. After that, I was able to stay away from websites and forums for only three weeks, and then everything returned with even greater force.” According to him, when he began to tell the priest about his problem, hinting that he was experiencing an unusual sexual attraction, he asked if Igor had Udmurts in his family (the man’s father was an Udmurt) - “and said that the Udmurts have very strong pagan roots and This is why they are punished like this.”

Psychoanalyst Kuzmina admits that when she was preparing for an interview with Meduza, she called a dozen colleagues and asked if any of them had encountered similar cases in their practice. “Even among colleagues, the first reaction was denial, reluctance to talk about it,” she admits, adding that until there is a medical consensus about voluntary amputees, specialists are unlikely to be able to help them. “The pain is very difficult to bear alone. Communication on the Internet is at least some way to cope with it,” admits Kuzmina, who believes that sooner or later “Vannabi will have to come out of the shadows.”

According to Professor Furst, his American patients also keep their peculiarity a secret. Only a few people decide to open up to their family and friends, and even fewer find support and understanding from them. “One of my patients in New York has been dreaming of becoming paralyzed for many years. And at some point he decided to move only in a wheelchair. He is a sales assistant in a store,” says Furst. “And then one day he just came to work in a wheelchair and announced to everyone that he had BIID. But his case is an exception. Usually people are very afraid of facing a negative reaction from others.”

At the end of the conversation with Meduza, Igor again returns to his desire to get rid of his “shameful” fantasies. “I really want to repent,” he says. - Just not in turn, as usually happens in church, but have a heart-to-heart talk with someone. It seems that if I tell everything and a person listens to me and understands, then I will immediately feel better.”

Amputi, devoti and vannabi

However, as is the case with anonymous scientific research, it is often impossible to verify how serious users are when they talk about their aspirations for amputation. Activists of various thematic groups, who often take surnames like Vannabko or Vannabov on social networks, sometimes write about amputations even too openly. Their pages are filled with photographs of semi- and naked people without arms and/or legs, often of a pornographic nature. When communicating with a Meduza correspondent, most of them stopped correspondence when they were asked to change the format of the conversation - for example, to call. Meduza repeatedly spoke with the main characters of the material - Denis and Igor - by phone and Skype.

“The strong impression of meeting a person without a leg can become a decisive factor in the formation of sexual deviation in a child under six years of age,” confirms psychoanalyst, co-author of the portal “Modern Psychoanalysis” Nadezhda Kuzmina. “At this age it is very difficult to distinguish between where the child is fantasizing and where he is just playing, so in most cases it is almost impossible to track the first shoots of a psychological disorder.” Furst's research confirms that most often BIID actually grows out of childhood experiences - and often the cause of the disorder is an encounter with an amputee.
According to Denis, he spent years wondering if he was crazy - and eventually came to the conclusion that he was not. He calls the disorder his “peculiarity” - and explains: “Bannaby psychotherapy is necessary. But if a psychotherapist believes that he can rid a person of the desire to amputate, then he is not a professional and has no idea what he is talking about. It's like convincing a black person that he is white. This is probably possible, the question is how healthy this position is.” Therapy, according to the man, is needed in order to learn to live with BIID - but it still feels like life in prison. Liberation would be amputation, which the man is not yet ready to undergo. “There are, of course, limiting factors. Firstly, parents,” he explains. “They don’t know about my desire, I protect them.”

Other obstacles are of a purely technical nature. “If my insurance company finds out that the amputation was not done for medical reasons, but at my request, it will sue me, and I will be doomed to poverty and ruin,” says Denis. “And the chances of finding a doctor who agrees to do it are also zero.”

Dream operation

According to Russian law, amputation without medical indications can be recognized by the court as intentional infliction of harm to health - punishable by up to eight years in prison. However, in groups dedicated to amputations, you can often find proposals with a similar wording: “A full range of services. Expensive, but reliable, legal and confidential." The author of one of these advertisements - he introduced himself as Viktor from Rostov - says that he himself is not going to cut off anything for anyone, but he can advise in detail and for money on all issues related to amputation. Victor once studied at the Faculty of Psychology; his thesis was on his attraction to “unconventional girls”: “It’s easy to write when the patient is yourself,” he explains. Then he met his first vannabi and realized that he could make money on this topic.

The only known case of a doctor performing formal amputations of healthy limbs on patients with BIID was recorded in 2000 in the UK. A surgeon at Scotland's Royal Falkirk Infirmary, Dr. Robert Smith, published a monograph, Questions, Answers and Recommendations on Voluntary Amputation, in which he reported that he had performed two amputations of healthy limbs on his patients. Smith said he had to take extreme measures because of the risk that patients might self-harm - and noted that he first checked the mental health of his patients to ensure that they were not sexually motivated. He refused patients who wanted amputation solely because of their sexual fantasies. According to Smith, after the operation his clients felt much better - however, when the public learned about the non-standard procedure, he was forced to stop working, despite the steady demand for such surgical interventions.

Coming out of the shadows

For Denis, the first step towards accepting his own identity was that he began to talk about his desires to others. Denis’s good friend was the first to find out that he was a vannabi and immediately shared the information with her husband. “Of course, I was shocked,” the man recalls, “but it helped me realize that it is impossible to live forever under this fear.” According to him, now he does not hide his desires from his boyfriends.
Unlike Denis, Igor did not talk about his desire for amputation with any of his loved ones - he only discussed it on the Internet with strangers, but people close in passion. “I’m afraid that the doctor will think I’m crazy,” the man explains. - I even turned to God, prayed, took an oath. After that, I was able to stay away from websites and forums for only three weeks, and then everything returned with even greater force.” According to him, when he began to tell the priest about his problem, hinting that he was experiencing an unusual sexual attraction, he asked if Igor had Udmurts in his family (the man’s father was an Udmurt) - “and said that the Udmurts have very strong pagan roots and This is why they are punished like this.”