Long sleep - a disease of the Kazakh steppe

In a cold spring morning in 2010, dull life of people in Krasnogorsk, a town in northwestern Kazakhstan, was troubled by an incident that would change the entire local community life.

Lyubov Belkova, who friends call Lyuba for short, had finished first as usual, and walked back to her stall by the entrance. Someone asked Lyuba a question. When no answer came, the women looked over to notice the plump, middle-aged woman slumped in her seat, head down on her table of socks and hats.

“Lyuba? Lyuba?” They called. No response. Nadezhda, a former nurse, hurried over. She tapped her lightly — nothing. She checked Lyuba’s pulse — it was normal. She checked her pupils — they were dilated. “Call the ambulance,” she commanded. Then she noticed Lyuba was snoring.

After a few unsuccessful attempts to wake his family decided that we need to see doctors. Lyuba was not awake until four days without to be able to remember anything of what happened to her during this period.

When she tried to get out of bed to find that it no longer feels legs from the knees down. "I thought it would not be mine!" was her thought. After a few minutes and fully recovered. She got one out of bed and was walking without any help hospital halls.

The little group healthcare in the area of relieved, thinking it was just one of those isolated incidents which can not be explained, but that science is unable to investigate very thoroughly because its impact is minimal and the human, financial and time resources must judicious use. But it would be not so!

 For the next month, Lyuba was emotional, she was weepy. Sometimes her granddaughter told her she had become aggressive. Lyuba complained of dizzy spells. She had headaches. She had to write everything down so as not to forget. Scraps of paper littered her kitchen windowsill: “Turn off water,” “Buy milk,”

“Take medication.” Lyuba was confused by all this; then again, at 61, she was getting older, maybe this was normal. Poor Lyuba, the townspeople told each other, but Krasnogorsk had been a Soviet uranium mining town — they’d seen far worse.

A few weeks after Lyuba, Nadezhda, the nurse from the market, went to bed one night, and the next morning her mother couldn’t wake her. She was snoring heavily. When she woke up a few days later, the doctors told her they couldn’t find anything wrong with her, she was probably overworked. She needed to rest more. She thought that made sense. Life had been hard in Krasnogorsk since the Soviet Union collapsed. Nadezhda had been tired for decades. Poor Nadezhda, everyone said, life hadn’t been easy for her.

For the next two years, Lyuba would be in and out of the hospital six more times with the same symptoms. She lived with a packed bag — underwear, robe, slippers — of everything she would need. Lyuba kept all her medical charts in a thick baby-blue folder. Doctors had written all kinds of things she didn’t understand: “signs of postischemic alterations of the basal ganglia,” “ischemic stroke,” “stenocardia,” “cerebral atrophy,” and “substitutive external hydrocephalus.” She had traveled to Russia for more tests. The hospital there did MRIs, EKGs, and body scans; they checked her thyroid. She trudged around for days with a machine the size of a large purse that logged her vitals. In the end, they told her she had second-grade circulatory encephalopathy and cerebral obliterating atherosclerosis, and they didn’t exclude the possibility of epilepsy. Her gait had turned jerky, she complained of headaches, she was always so emotional. She knew people were gossiping that there was something funny about her. Poor Lyuba, they said to each other, so many strokes, how is she still alive?

In March 2013, the townspeople gathered in the neighboring village of Kalachi to celebrate the spring festival of Nauryz. They watched their children perform traditional Kazakh dances, sing songs, and recite poems in the village’s playground. After a few hours, they settled into the bar next door for the evening, drinking into the night. Over the long weekend, three college-age kids and five adults fell ill with the same symptoms. First they would slur their words, as if they were drunk. They would see double, and start swaying, then they would fall asleep and snore heavily. They could be roused, speak, go to the bathroom, even eat food, but then they would fall back asleep. They stayed in this state for days. When they finally woke up, they didn’t remember anything. The villagers didn’t understand what was wrong. Maybe the kids had been doing drugs, they told each other,maybe the adults drank too much. But it didn’t add up.

That’s when the townspeople remembered Lyuba and Nadezhda. They remembered another woman who worked in a shop across the street from the market, who fell ill a few weeks after Nadezhda. She snored and couldn’t be woken for days either. Someone mentioned Bogdan — the high school senior who had come home from school and fallen on the carpet around the same time as Lyuba. Bogdan had been active in his illness, verging on violent. He kept trying to run somewhere and had to be tied down to the hospital bed. He was out for nine days. He didn’t remember anything either. Drugs, the town rumor mill had churned, maybe he drank something. It wouldn’t be the first time homemade brew had gone wrong. Teenagers, they had tutted.

They remembered Julia, a shop attendant who had gone across the street to the bakery in Kalachi a few months before Nauryz. After she came back, she took off her jacket and sat down, but when she tried to stand again, she couldn’t. She tried to speak, but her speech was slurred, as if she’d chugged a bottle of vodka on her morning bread run. She was ill for three days. When she woke up, the doctors told her she had overexerted herself. She needed to rest more. But Julia was 28 and she wasn’t particularly tired. The doctors said there was something wrong with her spine. After that, Julia was fired from her job; the proprietor didn’t want a liability. Poor Julia, people had said at the time.

Just as they were slowly connecting the dots, the residents of Kalachi and Krasnogorsk started getting sick en masse. It came like a biblical plague exacting revenge on all those people who had tutted poor Lyuba, poor Nadezhda, poor Julia. There would be nine waves of sleeping sickness in total — no street would be spared — over 130 people, a quarter of the total population, some multiple times. Everyone would exhibit similar symptoms: the slurred speech, the swaying, and the double vision. When they woke up, they remembered nothing. Everyone was getting the same diagnosis: encephalopathy of unknown origin, basically abnormal brain function of no known cause.

Scientists arrived with sample baggies and metal machines; then came local government officials in suits with clipboards and surveys about relocation. Journalists swarmed. People kept getting sick. No one knew why or what to do about it. And — despite reports this summer that a possible explanation has been discovered — they still don’t.

At first, suspicion turned on the uranium mine two miles away. The complex lies in shattered ruin on the horizon as a constant reminder of the town’s former glory. When I arrived in late April, there was little to welcome visitors. A gated cemetery on the side of the road and a lone landmark heralded our approach, proclaiming “Krasnogorsk” in neat red letters with a red jackhammer and helmet on a white inverted triangle. Beyond the stump, Krasnogorsk’s tall apartment blocs rise out of the flat golden steppe, as if they had been air-dropped there directly from Moscow — separated from the squat, ramshackle farmhouses of Kalachi by a small ravine that serves as the natural boundary between town and village.

Everyone who saw Krasnogorsk for the first time was jealous of its beauty and its bounty. The town had two schools, a large, gleaming hospital, and a theater that could hold 420 people. They had running water, electricity, and central heat, unlike their village neighbors in Kalachi, who carted well water, used chimneys, and kept livestock. The miners got extra rations of milk or sour cream. In the summer, everyone gathered at the Ishim, a river so clean people could see their toes wiggle when they swam in it. They would fish for carp and tench and barbecue it on the sandy banks. Miners had summer cottages with small vegetable gardens. They had so much, Krasnogorsk looked down on the 600 villagers of Kalachi. Why wouldn’t they? They even instituted a coupon system to prevent the villagers from buying their fancy town food. When the mine ran out of uranium in 1980, they sealed it and opened a new one 30 miles away.

It was in this atmosphere of uncertainty that people started getting the sleeping sickness. So when doctors said it happened because they were overworked, everyone believed them. Why wouldn’t they? If the residents of Krasnogorsk and Kalachi were exhausted, they had plenty of reasons to be.

From the beginning there were lots of theories. Maybe the wind was bringing something from the mine. Maybe it was coming out of the earth. Or maybe it was the changing seasons. People told each other to open the windows, they told each other to close the windows, but it didn’t seem to matter. Whatever it was, it was coming fast.

There were days when multiple people on a single street fell sick. There were days when people on opposite ends of the town fell sick simultaneously. The men were usually more active, verging on violent, and had to be restrained. Women were calmer in their slumber. Yet each could be woken up, spoken to, fed — smokers even went out for cigarettes — before falling back asleep. A cluster of people could be in the same place and only some of them would fall asleep. Why? they asked each other.

Kazakhstan’s National Nuclear Center’s Institute of Radiation Safety and Ecology was dispatched from its base in Kurchatov, northeastern Kazakhstan, for a month in April 2014. The team measured radon levels, though radon causes lung cancer, not drowsiness. They tested the ground, the air, the water, and food — tomatoes, potatoes, and cucumbers were put into plastic bags. Radon levels were high, but no higher than one would expect from a town and village practically on top of a uranium mine, so they ruled it out. They turned their attention to carbon monoxide.

But nothing was conclusive, so people kept talking. Maybe the village of Kalachi would be resettled like their neighbors in Krasnogorsk. Maybe the village school would be closed. Rumors stretched like shadows at dusk. A man swore he had seen people burying barrels in shafts when they were closing the mine. Someone else said the government had found gold under the town and wanted them out, so they were being poisoned. Maybe the government wanted to make the city a closed military zone, or a resort for the wealthy. Perhaps they found holy water; maybe it was diamonds. Residents started noticing helicopters flying overhead — could they be spraying something? People saw ghosts. One woman saw UFOs, small red and blue orbs that hung a few feet above the earth; others swore they’d seen them too.

Curiously, people also noticed that while visiting relatives from Russia and Astana, the capital of Kazakhstan, fell sick, no official outsider ever did — not the journalists, not the scientists, not the parade of local government officials who came to the village meetings with their empty promises. “How can you explain that?”, they asked each other. Surely this is evidence the government is poisoning us.

There was the truck driver who got sick while fishing and nearly fell into the once-pristine Ishim River. He crawled to his car and drove home, and his granddaughter watched as he slammed into the driveway and broke his headlight in the process. There was the school gym teacher who got sick at her neighbor’s house and sprained her neck. There was the village veterinarian, who finished castrating 40 pigs before people realized he had been sick the whole time. One man got sick on his motorcycle. No one understood how he managed to get back in one piece. There was the town dance instructor, the former ballerina who tried to dance Swan Lake and The Nutcracker while sick. There was the former engineer, an amputee, who had been inside all winter, but came out to the balcony to birdwatch in the spring and was sick in minutes. There were two pregnant women. There was the mechanic who had been walking to work when he got the illness, slipped on ice, and broke his back. There was the man who came to visit his mother-in-law, who’d been in town only a few hours when he got sick.

Then there was the cat, who everyone thought was sick, until the owner admitted she had fed it vodka. That didn’t bother people as much as when the cow died. Everyone was so panicked about their livestock, Acting Mayor Asel Sadvakasova commissioned a public autopsy by experts imported from Esil and publicized the results to prove the cow had died of natural causes.

Officials are also still uncertain as to how mines that have been inactive for 25-years could produce such large levels of poisonous gas, and why reports of the sickness began only two years ago.

The uranium mines closed in the late 1980s, but many locals and some scientists suspect the abandoned works have left a disastrous legacy.

“Concentrations of radon at that particular place are four or five times normal. And there are uranium ore mines nearby. Maybe [the problem] comes from there,” Artem Grigoriev, the head of research at the Kazakhstan national nuclear centre’s institute for radiation safety.

Evacuation of both villages began in January 2015, with the government seeking to relocate 223 families.

photo credit: google.com

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