Uppgivenhetssyndrom

In December, 2015, the Migration Board rejected their final appeal, and, in a letter, told the family, “You must leave Sweden.” Their deportation to Russia was scheduled for April. Soslan said that to his children Russia “might as well be the moon.” Georgi read the letter silently, dropped it on the floor, went upstairs to his room, and lay down on the bed. He said that his body began to feel as if it were entirely liquid. His limbs felt soft and porous. All he wanted to do was close his eyes. Even swallowing required an effort that he didn’t feel he could muster. He felt a deep pressure in his brain and in his ears. He turned toward the wall and pounded his fist against it. In the morning, he refused to get out of bed or to eat. Savl poured Coca-Cola into a teaspoon and fed Georgi small sips. The soda dribbled down his chin.

At the recommendation of neighbors, Georgi’s parents called Elisabeth Hultcrantz, an ear-nose-and-throat doctor who volunteers for the charity Doctors of the World. Three days after Georgi took to his bed, Hultcrantz drove to his home, a red wooden cottage with white trim in the farmlands of Garpenberg, a hundred and twenty miles northwest of Stockholm. Georgi was wearing boxers and short athletic socks. He appeared to be asleep. A tulip-patterned blanket had been pulled up to his chin. When Hultcrantz touched him, his eyelids trembled, but he didn’t move. Using a pillow, she propped up his head, but it flopped to the side. “He provides no contact whatsoever,” she wrote.

After a week, Georgi had lost thirteen pounds. Hultcrantz, a professor emeritus at Linköping University, urged the family to take him to the emergency room in Falun, a city forty miles away. He hadn’t eaten for four days and had not spoken a full sentence in a week.

A doctor at the hospital wrote that Georgi “lies completely still on the examination table.” His reflexes were intact and his pulse and blood pressure were normal. The doctor lifted Georgi’s wrists a few inches above his forehead and then dropped them. “They fall down on his face,” she wrote. A nurse noted that he showed “no reaction to caregiving.”

The next day, a doctor inserted a feeding tube through Georgi’s nostril. “He showed no resistance,” Soslan said. “Nothing.” Georgi was given a diagnosis of uppgivenhetssyndrom, or resignation syndrome, an illness that is said to exist only in Sweden, and only among refugees. The patients have no underlying physical or neurological disease, but they seem to have lost the will to live. The Swedish refer to them as de apatiska, the apathetic. “I think it is a form of protection, this coma they are in,” Hultcrantz said. “They are like Snow White. They just fall away from the world.”

The apathetic children began showing up in Swedish emergency rooms in the early two-thousands. Their parents were convinced that they were dying. Of what, they didn’t know; they worried about cholera or some unknown plague. Soon patients with the condition filled all the beds in Stockholm’s only psychiatric inpatient unit for children, at Karolinska University Hospital. Göran Bodegård, the director of the unit, told me that he felt claustrophobic when he entered the rooms. “An atmosphere of Michelangelo’s ‘Pietà’ lingered around the child,” he said. The blinds were drawn, and the lights were off. The mothers whispered, rarely spoke to their sick children, and stared into the darkness.

By 2005, more than four hundred children, most between the ages of eight and fifteen, had fallen into the condition. In the medical journal Acta Pædiatrica, Bodegård described the typical patient as “totally passive, immobile, lacks tonus, withdrawn, mute, unable to eat and drink, incontinent and not reacting to physical stimuli or pain.” Nearly all the children had emigrated from former Soviet and Yugoslav states, and a disproportionate number were Roma or Uyghur. Sweden has been a haven for refugees since the seventies, accepting more asylum seekers per capita than any other European nation, but the country’s definition of political refugees had recently narrowed. Families fleeing countries that were not at war were often denied asylum…

In a hundred-and-thirty-page report on the condition, commissioned by the government and published in 2006, a team of psychologists, political scientists, and sociologists hypothesized that it was a culture-bound syndrome, a psychological illness endemic to a specific society. Every culture possesses what Edward Shorter, a medical historian at the University of Toronto, calls a “ ‘symptom repertoire’—a range of physical symptoms available to the unconscious mind for the physical expression of psychological conflict.”…

Georgi spent three nights at the hospital in Falun before being sent home with a special supportive mattress. His friends called and texted him repeatedly, but they received no response. Georgi’s teachers called his family to find out why he had been absent for a week. Floridan, the headmaster, said that Georgi’s classmates were in tears when he explained what had happened. He told them, “Georgi has waited such a long time to get an answer about whether he can stay here in Sweden, and he has more or less given up. He finds no meaning in school or to even exist.”

A physiotherapist at the hospital advised Georgi’s parents to turn on the lights in his bedroom every morning, and to immerse him in the daily routine of the household. Georgi was rolled to the dinner table in a wheelchair; a cushioned headrest propped up his head, though his eyes remained closed. He was fed four hundred and fifty millilitres of nutrients five times a day, through a tube…

In a seventy-six-page guide for treating uppgivenhetssyndrom, published in 2013, the Swedish Board of Health and Welfare advises that a patient will not recover until his family has permission to live in Sweden. “A permanent residency permit is considered by far the most effective ‘treatment,’ ” the manual says. “The turning point will usually be a few months to half a year after the family receives permanent residence.”…

A chipper, gray-haired grandmother, Hultcrantz seems unaware of her power. She sometimes encourages families to “get their tubing”—the feeding tube—as quickly as possible, in order to emphasize their suffering to the Migration Board. Her iPhone is full of photographs that she has taken of refugee children lying in bed. Their eyes are closed, their faces are pale, and they have an expression of dull tranquillity…

In April, four months after Georgi became ill, the family’s deportation was postponed, because his dependence on the feeding tube made flying hazardous. He seemed to be sinking deeper into the condition. Hultcrantz observed that he had begun to drool. At Falun Hospital, a doctor noted that Georgi had “no muscle tone in either the arms or legs,” and that his arm reflexes were “difficult to trigger.” The doctor wrote, “The boy is alive but barely.”…

No apathetic patients are known to have died, but a few have been bedridden for as long as four years…

In late May, 2016, Georgi’s family received another letter from the Migration Board. Their neighbor Ellina Zapolskaia translated it. “The Migration Board finds no reason to question what is stated about Georgi’s health,” she read out loud. “He is therefore considered to be in need of a safe and stable environment and living conditions in order to recuperate.” The family was granted permanent residence in Sweden.

Georgi’s parents immediately went upstairs to his bedroom to tell him. He showed no reaction. “He doesn’t listen,” Zapolskaia said. “He’s not there—not anywhere.” For two weeks, Georgi’s brother, parents, and friends tried to get him to absorb the good news. His family took him in his wheelchair to an ice-skating rink, where his classmates were playing hockey, but the fresh air had little noticeable effect. “You have got the positive!” one of his friends kept shouting. Zapolskaia said, “We tried to show him that our mood had changed.”…

On June 6th, two weeks after the family learned that they could stay in Sweden, Georgi opened his eyes. “It was just a little—a little,” Zapolskaia said. He quickly shut them. “The light was too painful,” Georgi said later. “But I remember that I saw my family.” His body throbbed, as if he had just exercised far beyond his natural capacity…

Like most apathetic children, Georgi regained physical abilities in the reverse order in which he had lost them. He opened his eyes; made eye contact with his family; began to feed himself; started to walk, shakily at first and then more steadily; and finally began to talk in full sentences…

 “All my will—I didn’t have it anymore,” he said. “It felt like I was deep under water.” He struggled to find language that could adequately capture the experience. “I was just very tired,” he said at one point. “It was not like now—I want to go and run.” At another point, he compared it to eating too much: “You don’t have any appetite.” He didn’t seem satisfied with either description and tried again: “My whole body was like water.”

http://www.newyorker.com/magazine/2017/04/03/the-trauma-of-facing-deportation

Courtesy of a colleague