Coming in from the cold

By Erik Nilsson and Yan Yiqi (China Daily) Updated: 2015-05-26 07:27

Tang Jinchu (left) and Cai Haiqiu, two residents of the leprosy village, married after they were both cured of the disease.

Despite their tough lives, most of the residents are content. "Life's good here," said Gu Youliang, a 64-year-old who has been at the center for 48 years.

Gu was 17 when he was diagnosed, and his brother and brother-in-law carried his bed over the mountains for three days to reach the center. "I'd heard that people who came here never came out. But the doctors and nurses are so kind. They make my bed. They bring my meals. My brother-in-law says I have a better life than he does!"

Every patient gives the same reason for the greater social acceptance: Shafick George Hatem, a US physician who worked on the disease in China, and was the first foreigner to be granted citizenship of the People's Republic of China.

"I'm grateful he told people that leprosy is curable and they shouldn't be afraid of patients," said Zheng Jiansong, the center's youngest resident. The 49-year-old was diagnosed at age 11 and cured at 26, but it was too late to save his feet, which had already been ravaged.

"I returned to my village after I was cured," he said. "The doctors told the village leaders the disease wasn't contagious, but people still treated me differently, and my neighbors were scared by the ulcers on my legs."

He worked in factories for a short time, but eventually moved to the village, where he earns about 700 yuan a month by working in the laundry. "I had no choice but to come here because of my feet," he said. "I hope people with symptoms seek immediate treatment so they don't end up disabled. They can still work if they're not disabled."

He recalled the day he arrived: "I remember it clearly. It was Jan 8, 1983. It was snowing. I saw some patients and hid behind my mom. I'd never seen people like them before. I thought my life was over, and considered suicide. But the doctors and nurses were nice. I got over it in a few months. I'm not one to overthink things."

Even the medical workers treated patients differently back then. "The doctors wore biohazard suits with masks and gloves," he said. "It's very different now."

Fifty years of change

Zhang Caibao has seen plenty of changes during her 50 years at the center. The 91-year-old was diagnosed at age 29, but she didn't arrive at the village until more than a decade later.

"I never went home again," she said, sitting in her wheelchair. "I haven't returned because my son's wife is ill. They live up a flight of stairs. I can't do stairs."

She complained that her eyes hurt, so the nurses gave her some drops. "I'm satisfied with life," she said.

Her great-grandson visited recently, but he's the exception that proves the rule - families tend to avoid relatives with the disease. "Some families don't visit for a whole year. They don't understand," Nurse Pan Mei'er said.

Pan, who was awarded the Florence Nightingale Medal and introduced to then-president Hu Jintao in recognition of her devoted nursing career, said she understood why families are unwilling to visit sick relatives. Her husband works as a researcher at the village, and some of their friends have expressed concerns. The private lives of many of the medical staff members have been disrupted because of their involvement with the patients, and few of them are married.

Wang, the chief director, said his wife often voices objections. "I once cut myself when I was trimming a patient's fingernails," he said. "My wife was angry because she was afraid I'd get leprosy. She's forbidden me from clipping patients' nails, but I do it anyway. Their fingers curl into their palms and will slice into the flesh if the nails aren't cut."

He believes outsiders can learn a lot from the patients. "Their lives are hard, a real struggle, but they remain optimistic. We could learn a lot from them."

Contact the writers through erik_nilsson@chinadaily.com.cn

Coming in from the cold