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Hope born out of HIV when helping others
(China Daily)
Updated: 2004-07-21 08:54

XI'AN: He is only 23. He is HIV positive. He's ready to help on the air.

Xiao Yu ("Small Fish"- not his real name), who is 23, works in the office of "Home of Love," a non-governmental orgnization serving HIV carriers, patients and high AIDS risk groups, when he learned this past May in Xi'an, the capital city of Northwest China's Shaanxi Province. [newsphoto]
He is the initiator and founder of the first non-governmental organization serving HIV carriers, patients and high AIDS risk groups in Xi'an, the capital of Northwest China's Shaanxi Province.

He is an HIV carrier, too.

While most of the country's AIDS patients choose to avoid the public eye, he has chosen to make himself a focus of public attention.

Opening a hot line called "Red Ribbon," he shares his story with other AIDS patients and HIV carriers, and tries his best to help them in any way he can.

Xiaoyu (not his real name - it means "small fish,") is quite different in appearance from people's stereotyped idea of what people infected with the fatal disease look like.

A full 1.70 metres tall, the young man is handsome with big eyes and a ready smile, hardly what you expect in an AIDS patient.

In the office of "Home of Love," the NGO he founded in mid-May, he recalls how the disaster descended upon him.

Sudden disaster

On July 10, 2002, he gave blood at a clinic in Xi'an. Two months later, he was informed by the Shaanxi Centre of Disease Control that something had happened to his blood and that a re-check was required. He rushed to the centre immediately. After two blood tests, he heard the shocking result.

"I couldn't believe that I was HIV positive," he said. "Then I thought of the tonsillectomy I had undergone not long ago."

During the surgery he experienced massive loss of blood, and the following blood transfusion, he thinks, must have been the source of his HIV infection.

Not yet prepared to accept that he really had the disease, he went to the Beijing Centre for Disease Control for further examinations.

While waiting for the test result, he strolled around the city, as if it was his last chance to see the capital.

The result, again, stunned him.

"It was still hot in Beijing in September," he said. "But I felt freezing cold. It was like the end of the world."

He chose to face the misery alone.

Worried that his parents might not be able to handle the news that he was HIV positive, he lied, telling them that he had cancer. He used all his savings to buy a suit for his father and a platinum necklace for his mother, who cried the moment she saw the gift.

Concerned about the health of his aging parents, he moved out and lived by himself, although he knew the chance of contagion was slight. For the same reason, he decided to end his six-year relationship with his beloved girlfriend, who burst into tears and asked him why.

"I told her there was no reason," he said. "Since I couldn't be with her for the rest of her life, I would rather see her find someone better than me."

The loneliness that followed, however, was not the only hardship he had to face.

He became emotionally fragile and over-sensitive. A word or even a gesture could upset him terribly.

He gave up swimming, his favourite sport, because he couldn't stand the cold water, and he was also afraid that he might infect other people.

But he soon discovered that people feared him much more than he feared hurting them.

He still remembers once after he used the bathroom in one of his relatives' homes, that his relative flushed the toilet again and again.

"The sound killed me," he said. "Perhaps they didn't mean that, but I was really hurt."

Similar scenes time and again left him on the edge of total despair. He even made detailed plans for his own suicide.

To live on

But after he met Sun Yongtao, chairman of the Infectious Disease Department of Tangdu Hospital in Xi'an, he regained the courage to live.

Sun was the first person who offered him a handshake after learning that he was an HIV carrier.

The little gesture greatly encouraged him.

"I was excited," he said. "I began to think that maybe I was not that horrible, and that I could still enjoy life as others do."

Sun also introduced him to Thomas Cai (not his real name), president of "AIDS Care China," an international group providing psychological counselling for people infected with HIV.

He also attended a national conference on AIDS patients in China, held in Kunming, the capital of Southwest China's Yunnan Province, this spring.

These experiences endowed him with a sense of belonging.

He made a lot of friends among people with similar backgrounds, and realized that he could do something for them.

'Home of love'

Inspired by the conference, he began to think about setting up an organization, to help clear up misunderstandings about AIDS and to help infected people to find courage and hope.

By chance he got to know Jia Ping'an, the host of a telephone hot line called "Home of Haemophiliacs."

Walking with crutches, Jia has turned his six-year-old hot line into a legend popular among sufferers of uncontrollable bleeding for six years.

With this successful experience in hosting a hot line, Jia was touched by Xiaoyu's plan and asked his friend Ke Zina (not his real name), a postgraduate student and a former surgeon, to join them.

In mid-May this year, "Home of Love" was established. And the "Red Ribbon" hot line, 029-86242632, came into use.

With no promotion or advertising, the hot line did not create a stir at first. There were only 30 calls in the first month.

Although not many calls came in, they made sure that every caller's questions and worries were addressed.

When there were no calls, they spent time reading, broadening their knowledge of AIDS.

According to Xiaoyu, people calling in fall mainly into three categories.

The first group consists of those with permissive sexual behaviour. They are eager to know the early symptoms of AIDS to tell whether they have been infected.

With this group, Xiaoyu and his partners explain the basic facts of AIDS and help them out of any unnecessary panic.

The second group is made up of those who are infected with the virus and want to know where to find better doctors or hospitals, medicine at lower prices, and whether they can get married.

The third group consists mainly of warm-hearted persons expressing support and volunteering to lend a hand.

The most unforgettable call, for Xiaoyu, was from a 70-year-old lady.

"She has no children, and she said she would like to be my mother, but only if I wanted to be her son. Also she told me to call her any time I met difficulties," he said.

Some of the volunteers have now become his friends.

One of them is a student in Chang'an University in Xi'an, who called to ask if he could join the organization.

At their first meeting, Xiaoyu did not tell the young man that he was HIV infected.

They had a nice talk in a teahouse until the young man asked him if he had ever shaken hands with an AIDS patient.

He hesitated for a long time before decided to wait until their next meeting.

At their second meeting, the young man asked him again how he felt when he was with AIDS patients. This time he did not hide the truth and said he himself was one of them.

There was silence for a while. The young man stared at him with doubt in his eyes.

At last, he reached out and took Xiaoyu's hand. The handshake, again, strengthened Xiaoyu's resolve to continue his work.

Xiaoyu has just come back from his journey to Thailand, where he attended the 15th International AIDS Conference, which ran from July 11 to 16.

His plan, said the young man, is to convey what he learned at the conference to more AIDS patients in China.

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