The glance that nearly saved a life

• Source: Global Times
• [10:51 July 30 2010]
• Comments

Zhou Yi. Photo: Zeng Zhiwei

By Zeng Zhiwei

Six years ago, Zhou Yi was waiting to die. After he learned that he had contracted HIV, the 41-year-old Shanghai man had sunk into a depression that only a chance glance upward was able to pull him out of. Six years later, Zhou is now one of the most outspoken advocates of the AIDS community in Shanghai and remains one of the few people in China who is publicly open about his disease. After surviving his own depression, Zhou decided to carry on, not just for himself, but to help others stricken with HIV and AIDS fight their own personal battles with despair.

Gaining a new lease on life

As a younger man, Zhou had heard about AIDS, but thought it was something far away from his life, even as a gay man. He believed that he would never contract HIV as long as he did not sleep around or have sex with foreigners. He kept to his rules, but ended up getting HIV anyway. He believes he got it from having unprotected sex with a Chinese man he was in a relationship with. "It was a time when people in China did not know a lot about AIDS," he said. In 2004, Zhou took a blood test that revealed his immune system was on the verge of collapse. Zhou was already suffering serious symptoms, such as dermatitis, swollen eyes and veins that were turning black. "I thought I would be dead in six months," he said.

 His doctor suggested that he start taking antiretroviral medication to slow the course of the disease, but explained that once Zhou started taking it, he would never be able to stop. At that time, China had not yet begun providing free antiretroviral drugs for HIV carriers and Zhou couldn't afford the 7,000 yuan ($ 1,033) per month that the drugs cost at the time. So he decided to forego treatment and began preparing for his death. He transferred his property to his parents, ended his relationship with his boyfriend and used his savings to visit the places where he grew up. When he returned to Shanghai, he decided to splurge on one last weekend for himself, spending two nights in one of Shanghai's most expensive hotels. He walked out of the hotel nearly penniless, looked up at the steel skeleton of the World Financial Center in Pudong New Area, which was still under construction, and decided he wanted to take his parents to see the view from the top of the tower when it was finished. So he waited. And lived. His weakened immune system managed to beat the infection. "I was really lucky," he said.

Finding a purpose

Zhou began to look for other HIV carriers, and found a large community online. "There are so many of them. But they all keep themselves hidden," he said.

 To give HIV carriers a way to find and communicate with each other, Zhou and a friend set up an online group for carriers in 2005. A year after, they set up Beautiful Life, an organization dedicated to helping HIV carriers deal with the problems that come with the disease. Beautiful Life also advocates on behalf of HIV carriers and AIDS patients and serves as a liaison with government agencies and hospitals.

 Through his work, Zhou has met many Chinese and foreign carriers in Shanghai. Of the 10 foreign carriers Zhou knows, five are getting free medication from the Shanghai Municipal Center for Disease Control and Prevention. Although Chinese policy stipulates that foreign carriers need to pay for their treatment, Shanghai bends the rules to provide free medication for foreigners who can't afford it, according to Zhou. "It is not always good to strictly follow a policy," he said. "Because of this flexibility, Shanghai is better than other places in China."

Other foreigners are able to fly home or to other Asian countries to buy their medication, but "not everybody has the money to do that," Zhou said. Most foreign carriers are unwilling to reveal that they have contracted HIV to anyone other than the officials at the Shanghai Municipal Center for Disease Control and Prevention. "They are afraid they will be sent back to their own country," Zhou said.

However, they do talk to Zhou about how to get treatment in China. And two of them regularly join the events Beautiful Life organizes. "They don't have many problems, except that they are lonely," Zhou said. "Chinese people are not very accepting of this disease. The foreigners don't want to talk about their problems with others. They don't have people to share them with."

A rough road

In 2009, Zhou's HIV advanced into AIDS. After working with carriers for five years, Zhou feels exhausted. He has seen many young carriers resort to drug use after contracting HIV. They have lost faith in themselves, he said. They feel life is meaningless. As a representative of the community, Zhou sees the young carriers as his own children. He said it kills him to see them give up on themselves.

It also angers Zhou to see how some middleaged carriers take advantage of the system, such as attending meetings or treatment workshops just to get the free gifts or money that often are given out at these events.

"It would be good if they came to actually learn about their disease. But many just come for the money or the gifts," Zhou said. "They are just not interested."

Zhou wishes the government would not just give the carriers money. He would rather see the funds used to build a support system to help them.

Still, for all that AIDS has taken from him, Zhou said it has given him perspective. He has had the opportunity to hear many people's stories and feel the love a stranger can give to another. "These people taught me how to live. AIDS is not a gift, but it depends on how you look at it," Zhou wrote on the blog. "Personally, I am grateful for it."