New Organs Within Us is a richly detailed and conceptually innovative ethnographic analysis of organ transplantation in Turkey. Drawing on the moving stories of kidney-transplant patients and physicians in Istanbul, Aslihan Sanal examines how imported biotechnologies are made meaningful and acceptable not only to patients and doctors, but also to the patients’ families and Turkish society more broadly. She argues that the psychological theory of object relations and the Turkish concept of benimseme—the process of accepting something foreign by making it one’s own—help to explain both the rituals that physicians perform to make organ transplantation viable in Turkey and the psychic transformations experienced by patients who suffer renal failure and undergo dialysis and organ transplantation. Soon after beginning dialysis, patients are told that transplantable kidneys are in short supply; they should look for an organ donor. Poorer patients add their names to the state-run organ share lists. Wealthier patients pay for organs and surgeries, often in foreign countries such as India, Russia, or Iraq. Sanal links Turkey’s expanding trade in illegal organs to patients’ desires to be free from dialysis machines, physicians’ qualms about declaring brain-death, and media-hyped rumors of a criminal organ mafia, as well as to the country’s political instability, the privatization of its hospitals, and its position as a hub in the global market for organs.
About the Author
Aslihan Sanal is a cultural anthropologist who focuses on science and medical technology. She received her PhD from MIT in 2005, and is currently working as an independent scholar. This is her first book.
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NEW ORGANS WITHIN USTransplants and the Moral Economy
By ASLIHAN SANAL
DUKE UNIVERSITY PRESSCopyright © 2011 Duke University Press
All right reserved.
Chapter OnePART ONE
HALF A HUMAN
Oguz had been having odd sensations since he had been diagnosed with renal failure and began dialysis. These sensations were such that he began to feel as though the dialysis machine took him over, turning him into a robot. After having a transplant, these feelings were replaced with another kind of feeling for his body. As these changes began, he also entered a new realm where he no longer understood himself. All that he could recognize was that he was half: not completely a machine but not completely human either.
Oguz's health problems started sometime in 1996. He was living with his family in a gecekondu mahallesi (slum) of Istanbul where he had joined a gang and had territorial fights with boys from other gangs. One day as he was wandering alone in another neighborhood, he was attacked by twelve or thirteen men and badly beaten for no obvious reason. Covered in blood and with a stabbing pain in his chest, he made his way home. Shortly the pain became so unbearable that he had to go to a small hospital nearby to have it treated. In this privately owned hospital, physicians could not understand the link between the injuries from the fight and the chest pain; they suspected that he was suffering from a lung problem. Since they were unable to make a diagnosis for a couple of weeks, they decided to send him to a big university hospital to be cared for. By then, he had already begun feeling much worse, and then, one day, he collapsed due to internal bleeding. After undergoing a month of tests at the medical school hospital, he was diagnosed with a rare lung illness. In the meantime, however, Oguz's kidneys had begun failing, and so he began dialysis.
Oguz did not like the university hospital's dialysis unit. It was not a friendly place; it was a research center and he believed the patients were treated like experimental animals. At least ten different doctors would come by to examine him, each with teams of assistant fellows. They would look at him, touch him, and talk about him as if he were some alien being; they would look into his files and take blood samples, and all of these things made him feel uncomfortable but he had to accept them. Apart from the overwhelming feeling of becoming a research object in the hands of junior physicians, he found dialysis itself a very uncomfortable experience, unpleasant to the point of dehumanization. "Öldüm öldüm dirildim. Normal insanliktan çikmis oldum," he said using an expression that literally translates into "I died, I died, and then was resurrected. I exit being a human." His experience was the unbearable mahrumiyet—abstinence—from his social life, which he had in common with all other dialysis patients, and with patients in general. His routines enhanced this abstinence.
After dialysis Oguz would take the public shuttle home and usually throw up at least twice on the way. He could hardly stand when he finally arrived home. The treatment was making his days unbearable, so he decided to go to a dialysis center recommended by his nephrologists. Even though he still felt like he was half-robot, he could at least have meaningful conversations with the staff at the dialysis center. The doctors there were friendly and reassuring. When they talked to him, they did not expect anything in return. He would have tea with the owners—a retired high school teacher and his wife—and they would talk about everyday life or discuss matters that he could not share openly with his own family. In time, the dialysis center became a new home to Oguz, one where he was welcomed like a son. He no longer threw up after treatment, and instead went home tired but relaxed.
Though treatment at this private center was much more pleasant, being on dialysis nevertheless remained an uncanny experience. It changed the way Oguz felt about his body and his place in life. If he missed a treatment he would go into a coma; if he were older he could die. He had to be regular and punctual with the three-hour appointments four times a week. When Oguz realized the importance of the rigid schedule, the restricted life, and his dependency on the machine just to stay alive, he invented his "half-robot, half-human" identity for himself, a joke about his new condition. Attached to the machine, he was like a robot that had to be recharged. The fistula, the plastic tube inserted into an artificial opening in his blood vessel, enhanced his feeling for his machinization—he had to leave the hospital with this small plastic apparatus on his arm, which was like an opening to the outside world. This connection between him and the dialysis machine was open, açik, when he was unplugged. He felt open and unguarded.
Through interventions such as this, slowly dialysis taught him what suffering meant. "Bilmek degil, yasamak önemli," he told me in describing his common sense in another expression, one meaning "What counts is not knowing but lived experience." He would never before have thought that a human could become a robot, an electronic thing. He began to gauge the treatment of his own body in terms of how electronic things should be tended to and cared for. What would happen to a robot, for instance, if one put it in water? It would fall apart, letting off steam and electrical sparks from its exposed wires. And now that he was a robot himself he actually experienced this firsthand. On a beautiful summer day in Istanbul he went swimming after a dialysis treatment. A few days later, wounds like large burns appeared on his back. On a human body wounds like these could be caused not by water but by contact with an electrical current. This strange injury confirmed for him that he was a robot, just like Arnold Schwarzenegger in The Terminator—less a person, who would be safe in water, and more a machine, which should not be exposed to it.
There were other physical changes. Like many other dialysis patients, Oguz had become a hemophiliac. Cuts would take a very long time to heal and wounds would bleed a lot because the blood had been diluted by the dialysis fluid. The dilution even changed the skin's immunity and resistance to cuts. He feared that the connection to the dialysis machine had compromised not only his bodily integrity but also his defense mechanisms, his body's resilience.
Another change was the feeling of an echoing emptiness inside him after dialysis. He felt empty, or rather, emptied out. He was not allowed to drink more than three liters of water between sessions. But he would often drink up to four or five liters, causing his body to swell up. Once the excess water was cycled out of his body by the dialysis, he felt empty. The emptiness inside him—maybe the melancholic feeling of a void—came to be filled by drinking together with his friends, which made him feel that he was just like any other healthy and normal man of his age. He continued the habit even though his doctors and treatment protocol strictly forbade him from doing so. In a secret room behind the local bakkal, they drank until the morning hours, causing a greater damage to his body than ever before. He was taking in much more fluid that he was allowed, exceeding his body's limits and causing his health to deteriorate further.
Doctors might have realized and understood his self-destructive behavior, but they never confronted him about it. The nephrologists who cared for Oguz at the hospital had asked his parents to consider organ donation. His father did the tissue typing and other relevant blood tests and turned out to be a positive match. The nephrologists suggested that Oguz should receive his father's kidney, but Oguz did not want it. He was not so sure how a transplant—from his father or anyone else—would improve his life. And had he known how it was going to change his life, he would never have accepted it. He would prefer the abstinence at the dialysis machine to the odd psychological transformations that followed the transplant. But he could no longer resist his parents' and the doctors' pressures, and in time he agreed to have the transplant.
The transplant made his relationship with his father worse. As a son who had never been close to his father, he could not bear the transformations. It was as if with the transplanted kidney he had taken in the distance between him and his father. Many feelings about his body emerged with "the kidney," feelings he disliked just as he disliked his relationship with his father. He wished the doctors had told him what it would be like to live with his body like this. But it was not until after the operation, with his father's kidney inside him, that Oguz was pulled aside by his doctor and told he was not allowed to get married or even have intercourse. The doctor told Oguz that the new kidney would not last more than nine years, even with the best care. Oguz would have to be much more attentive to his diet and his lifestyle, because if this kidney failed he would have to live on dialysis for the rest of his life. But on dialysis, he believed, he had had a better life: he could socialize and drink with his friends and then go to dialysis to be cleansed. In a way the machine made it much easier to go on with his social life, compared to the frail transplanted kidney, which demanded constant care. "The kidney" was not his body, nor could it ever become a part of it. It was not a permanent solution. But the dialysis machine was. Knowing these facts, Oguz began abusing his transplanted body. In time his body would reject his father's kidney anyway, and he could go back to the machine. Why not go back now? Why spend nine years in abstinence?
Oguz was extremely upset by the new restrictions to his body. Despite much disapproval among his friends, he decided to marry his girlfriend. When he announced that they were engaged, many of his fellow patients became angry with him, telling him it was not his right to destroy the life of a young girl by risking having a baby with her or preventing her from having one. "What if your children suffered from the same disease?" they asked him. "What if you died?" ... What if he died? What if he died? This was something he did not want to think about any longer; death occupied his mind all the time, taking over his thoughts, possessing him. So one day he decided to take things into his own hands:
So I got something from the pharmacist over the counter. I came home, had a little argument with my parents, and then went to my room. I smoked two cigarettes. I swallowed all the medication. I waited ... In the meantime one of my parents came in and we had another short argument.... I felt my head spinning, so I left home only with my pants on, no shirt, no shoes. I went to the school. In the meantime my mom [having seen Oguz run out] called all my friends, sent them to look for me. It took them one and a half hours to find me. I had my mobile phone but I didn't answer. If they had been an hour later than they were, we—both the kidney and I (böbrek de ben de)—would have been gone. Then I started therapy. There [the therapist] asked me odd questions I did not answer. He asked me if I was sexually abused when I was a child. I say no! I say maybe he was abused, not me! I get so upset with his attitude. It is strange ... when I went there for the first time, I saw six or seven patients with dark circles under their eyes staring into empty space. They looked vacant. Then one asked if I came to see the same doctor. I said yes. Then they said, "Oh welcome, so you are one of us." Three days later I asked the doctor what medication he gave to his patients that they all looked empty or so dull. I asked him why they were all staying in the same room. He said I was wrong in my assumptions and then he asked the same question about my childhood and sexual abuse. I never went back again. I was there as a normal person; in a week I would become insane like the others. They do strange things, their body language is odd, but in time you start acting like them.
He did not remember exactly why he had wanted to commit suicide. But he was trapped in a life he could not escape; he could not eat or drink or go out and watch a soccer match. Each time he did, his failing kidney forced him into dialysis for a few days. His social life, like his body, had been halved. With the new kidney, he neither lived in a state of biological normalcy as a healthy person nor enjoyed a social normalcy. Even a close friend with whom he had argued one day had yelled at him, "Do not make me angry or I'll punch you, and then you are done with ... you are just half-a-something anyway! [yarim kalmis bir seysin zaten!]" Oguz had never forgotten these words; they were carved into his mind like an epitaph. They would constitute his life from then on, confirming his place in the world as truly having become half-a-something. How he felt about his own impairment was one thing, but the fact that others thought he was "half" because he was not physically strong enough to be their equals and to hang out with them was another.
Oguz was no longer himself; his father's kidney had changed him. He began projecting his negative feelings for his father onto his own body. He used to love the smell of soap—he washed his hands all the time and used up to four or five soap bars a week, playing with it and enjoying its aroma. After the transplant he no longer washed his hands. "For example, I have not washed my hands for two days," he told me one day. "Since the transplantation I cannot wash my hands any longer. If only I knew why.... All these habits changed. If I knew why, maybe I could start playing with the soap again." A few months after the transplant, he cut off his distinctive goatee. He was well known for it among his family and friends, and he had been the first to introduce this style to his neighborhood. He had seven different styles for his beard, one for every day of the week. Now he no longer cared about his looks: he didn't iron his trousers or even look in the mirror.
According to his physician, Oguz suffered from chronic organ rejection, a condition that forces the patient to undergo dialysis every so often even after receiving a transplant in order to keep the new kidney functioning on its own. Oguz was trying to get rid of the kidney he had been given against his will. His father had taken over his body through the kidney; Oguz realized he was losing control over himself entirely. He resisted becoming like his father. He lived with his kidney in an absurd symbiotic relationship he could never have known or imagined in advance. He could no longer identify with his body, accept it, or like it because of what it had become. The kidney could only be a separate thing attached to him, like his cold and distant father was merely attached to Oguz's family life. But things had changed and he was grabbed from within; he had lost himself within. Oguz wanted to be a robot, like the Terminator, even if this meant he would no longer be fully human. It was better than "the becoming" through "the kidney." In the end he had to choose: either to live as half-a-something (yarim bir sey) through the dialysis machine, or to die.
FROM THE EARTH, THROUGH THE QUAKE
Hatice suffered renal failure ten days after she gave birth. The overlapping loss and gain, her kidneys and the baby, made her life very difficult in the beginning as she was ill in the hospital and could not care for her baby. But in time, she embraced these things—the failed organ and the new baby—thinking that they were her nasib (fate), that they were God's doing.
Her life had been an unfolding surprise in a way. In 1998 Hatice married a sailor who worked for an international shipping company. They had met in Izmit, an industrial town one hour to the east of Istanbul. Izmit's barren concrete landscape is standard third-world imagery—smoke from oil refineries, houses only half-built and leaning into each other to stay upright, many shades of gray looming over laboring workers, and children playing soccer as if they could bring life back to the dying earth beneath the thick concrete of modern life.
Excerpted from NEW ORGANS WITHIN US by ASLIHAN SANAL Copyright © 2011 by Duke University Press. Excerpted by permission of DUKE UNIVERSITY PRESS. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of ContentsPrologue. The Accurate Nature of Things xi
Introduction. What Makes the World Our Own 1
The Book 6
In the Field 7
Part One. The Desirable 15
Half a Human 15
From the Earth, Through the Quake 21
Against the Tide 26
Traveling to the West and the East 30
Within the Experiment 36
Close to Death 41
Internal Objects 44
Words of Life 46
The Biopolis 50
East of "Reason," West of "Eternal Life" 54
Regulating Human Affairs, Fears, Emotions 63
The Economy of Human Flesh and Bones 85
The Biopolis's Vocations 95
Twice Inert, Lifeless, and Life-less 108
Part Two. The Impossible 111
Spaces of Death 111
The Pool of the Dead 118
Beyond the Mirror 134
Dissection and Disenchantment 140
Rites of Diffusion 146
Dying Metaphors 160
The Possible 175
Conclusion. New Life 179
Epistemic Passages 180