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Lives Scarred by SARS

Nation page 15 issue 401
Translated by Liupeng
Original article:

Five years later, though the Severe Acute Respiratory Syndrome (SARS) outbreak has become just a memory for most Chinese, many survivors remain permanently scarred.

Aside from the emotional impact of lost family and ruined lives, many survivors are struggling with rare bone and lung diseases. The medical community has not reached a consensus on their causes, with some believing that it was a consequence of SARS itself, and others suspecting SARS treatment.

Here are the stories of four SARS survivors.

Living in Pain
By the time Yang Zhixia was released from the hospital one month after the outbreak, her parents, husband and little brother had already died of SARS.

On the day she was discharged, nobody came to take her home. She painfully made her way back to her bungalow in a Beijing suburb only to find that it had been burgaled and left bare. The police told her that at the time of the discovery, because her family had already perished, they were unwilling to notify her with yet more bad news.

She rushed to her parents' small home in Beijing's dongcheng district. However, because her health was too poor to cook for herself, neighbors volunteered to look after her. But haunted by memories of her parents, she found it too difficult to stay there.

Yang was once a factory manager who always maintained a neat appearance and bolt upright posture. But now, she often talked incoherently and sometimes choked up when retelling her painful memories. She was haggard and losing hair from the intense hormonal therapy.

Among her relatives, only her elder brother's family and her younger sister-in-law's family survived the disease.

Her elder-brother had been a cook in Quanjude, a well-known roast duck restaurant in Beijing, but he retired with a pension after winning his battle against SARS. Her nephew didn't have a baby as a result of being a SARS patient. Yang's younger sister-in-law, who had been married to Yang's brother, lived with their daughter.

Not long after moving, she was afflicted with a rare bone disease named ischemic necrosis. In the beginning, she insisted on going to work, but she eventually lost the capacity to do so. Gradually, she became reluctant to go out except on Tuesdays to see a doctor or to occasionally visit a local government office through which citizens can file complaints or demands about public service. Yang went to ask for some medical and living subsidies.

Owing to her severe bone illness, some patients she knew from the hospital would take turns going to Yang's home to cook for her and chat with her. When the disease was at its worst, Yang couldn't put on her trousers by herself, as her shoulder bones had also became weakened.

In the first few years, she had thought about suicide. However, her son, as her only spiritual support, dispelled such thoughts. They do not talk about the traumatic events, however, during the half year after her husband died, her son often would dial his father's phone number. Today, aside from both Western and traditional Chinese medicine treatments, she walks a pet dog in her spare time.

Only Serve Beverages for Guests
Zhang Wei is also a SARS survivor still suffering from the disease's aftermath. His elder brother and father died of the disease. Until now, his sister-in-law and two nieces had severed contact with him because of the disease. Each time they received a call from Zhang, they immediately hung up.

Before sickened by SARS, Zhang was a designer in a large auto fitting factory. Nowadays, he was used to treating his guest to bottled or canned beverages when they visit his home. "Since I contracted SARS, I would always serve bottled or canned Beverages to my guests, even I daren't use the paper cups," he said.

Zhang's 80-year-old mother was also a SARS patient. Two years ago she had a cerebral hemorrhage, leading to aphasia, and became reliant on a nutrient fluid drip for survival. In order to cut down expenses, Zhang learned how to act as a nurse for his mother and maintain her life support equipment. Throughout, Zhang himself was still quite ill. His right leg was weak from bone disease and his fingernails had fallen off due to a calcium deficiency. He and his wife earned 3,000 yuan every month, which was the only income for the whole family, but they had to spend half of that income on his mother's treatment.

In 2004, Zhang heard that a hospital planned to do SARS disease research and thus could provide body examination free of charge. But when he went for the checkup, the hospital told him that it would cost 1,000 yuan. He rejected it despite that his bones often ached. Zhang was not alone--after hearing that many fellow patients had been diagnosed with bone diseases, some ex-SARS patients have refused to go to the hospital, fearful of the prognosis.

In 2006, the Beijing municipal government designated certain hospitals to provide free treatment to the SARS patients. Thereafter, when his bones ached, Zhang Wei went to the hospital to ask doctors there to inject seal oil extract, a lubricant, to alleviate the aching of his joints.

"You can't understand the suffering of an ex-SARS patient," Zhang said.

A Daughter
Many SARS survivors have formed their own closed social circles. This is how Yang Zhixia and Bai Lixin became acquainted.

Before coming down with SARS, Bai was a deliveryman at the head office of the Xinhua Book Store. She had a mentally retarded daughter, who always flashed a sweet smile.
When Bai was in hospital, her daughter used to call her every day. The monthly phone charges reached over 1,000 yuan.

"Mom, you can't die. If you die, who can take care of me?" Bai Lixin recalled the most frequent sentence her daughter sobbed on the phone.

After Bai recovered, her neighbors would often make disrespectful comments about her or avoid her in the street. At times like these her daughter would often stride forward to quarrel with them in defense of her mom.

Later, Bai was diagnosed with both diabetes and a kind of bone disease. The medical costs were too much for the family. At one time, Bai's husband came home and joked: "There's a popular expression for people who live check to check. We too were a member of this clan." Bai didn't react immediately, but when she pondered the words later, she had a heart wrenching realization of the direness of their situation.

Before 2004, she hadn't thought of applying for a special needs certificate for her daughter. She hoped that her child would be treated more like other children without it. One day, a teacher told Bai, "Now that you can't take care of yourself, why not to apply for the certificate and enjoy some government support?"

Bai responded, "She is what I am most concerned about, should I not be around one day." Upon hearing the words, the daughter immediately turned her head and gazed at Bai. She was a sensitive, intuitive child: when Bai's patient friends had get-togethers, the daughter would hand out biscuits and and hand-made wishing cards.

Isolated World
Wang Yonghong was 43 years old when he contracted SARS. He was an editor at a domestic newspaper in charge of the international column and could speak fluent English.

After he was discharged from the hospital, he often couldn't fall asleep at night. Instead, he would pace back and forth in his room thinking about why he contracted SARS and how his whole life was completely changed. After he developed the bone disease, he would rarely to go to the office. Wang knew that he had become isolated.

Except chatting with some fellow patients, he was unwilling to talk with others. "If I went to the office, my colleagues would make detailed inquiries into my health. That not only distracted their work attention but also saddened me."

Sometimes, his colleagues felt embarrassed. The department director once spoke with his colleagues: "Each time we go out for meal, I'm always torn. If ask Wang Yonghong to come, I'm afraid that our chatting  about our lives and our work would make him feel uncomfortable. But if I don't call him, I am worried that he would misunderstand."

Although the company treated him thoughtfully, Wang still felt as though he was of another world.

In 2006, Wang was divorced from his wife. Despite that his ex-wife often accompanies him to see doctors and fetch medicine, he clearly knew that he would depend on himself to get through the next several decades.

Ex-SARS patients not only suffered from the physical ailments but also had to confront economic pressure and what they refer to as an indescribable mental agony. "Except fellow patients, we almost don't have any other friends. We can't join the social activities, we're just too awkward," said Zheng Suling, an ex-SARS patient.

Liang Xu, a tall and pretty girl, used to love dancing so much that she taught dance classes at several universities in Beijing for free.

She has since given her dance equipment to others, as she could no longer use them.

She told EO that though she only had a fever, she was diagnosed with having a SARS and subsequently underwent treatment. Now she was suffering from bone disease, and must use crutches to walk.

During that period, her boyfriend left her. Years later, she married a co-worker and got pregnant. However, the hospitals in Beijing had never handled such a case, and after many twists and turns, Liang finally received treatment in a hospital after calling and consulting many experts.

"I was anxious. Not only would the pregnancy aggravate my daughter's illness, I still didn't know whether the baby would be affected by my daughter's SARS treatment," Liang's mother said.

In August 2006, the ex-SARS patients launched a survey, showing  that among the 110 SARS patients, only 11.8% weren't affclited by bone disease, and that among those affected, none had recovered. Forty-three respondents had to quit their jobs. The average age of those surveyed was over 43 years old.

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