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China: AIDS blogger Li-xiang's unextraordinary life

Li-xiang is a patient, but also more than a patient. He filmed in 2004 a documentary called “our life” about how AIDS patients live, and founded an AID-care NGO named Red-wood, which reaches out to comfort AIDS patients and train health-care volunteers. Outside his sickroom, he is more a social worker than a patient in need of care. As he said

对我来说,每天的工作就是做能够帮助艾滋病毒感染者的工作,以及减少大众对艾滋病的误解和歧视的工作,大部分时间都是在围着艾滋病打转转,像任何一个社会 工作者那样。

To me, my daily work to help AIDS patients, and lift public’s misunderstanding and discrimination against AIDS. I spent most of my time working on HIV issue, as any social worker does.

Now about 30, he contracted AIDS in a blood donation when he was only a high school student. He started blogging in 2005, writing about his life, ideas, and occasionally HIV treatment. He faces the disease with an open mind and never grudges talking about it, and his optimism cheers up many of his fellow patients.

He writes about AIDS treatment and discusses with netizens, many of them fellow patients, the prospect of overcoming the fatal disease; for example, he has entries called “Li-xiang: my point on AIDS medicine”, and “Li-xiang: relationship between anti-virus cure and CD4.” Also, he scolds the quake that swindles fake medicine to anxious patients. Moreover, he deliberated on a trade-off between people’s privacy and a preventive measure against AIDS that have to make any lurking disease open.

以提供救治为首要核心的战略,是否要转移到以预防为核心的战略?还是努力救治,也努力预防?过去以救治为首要核心的战略和实施是否也只是杯水车薪?全世界6000万艾滋病相关的工作者,是否真的有效救治了4000万艾滋病感染者和病人?在艾滋病面前,我们是否需要牺牲人权来进行普遍的强制 检测,才能更有效的控制艾滋病的流行?这样是否值得?——李想

Should we shift from a strategy that centers on treatment to another strategy centers on preventive measures? Or should we do them equally hard? Is the measure we are taking now, namely, treatment going first, only takes as little effect as a water drop has to the entire sea? Are the 60 million AIDS workers around the world able to save effectively the 40 million patients? Should we, facing AIDS, sacrifice human rights to impose a forced examination on people to better control the AIDS infection? Is that worth it?

He has been a celebrity. His deeds were widely reported. Southern Weekend, an influential periodical, dedicated one page to him after his documentary was finished. He was said to be so busy that even on bed he has to pick up phone calls to tell his ideas about where the NGO Red-woods should be going for next step. And pictures show that he was planting trees with the Belgium Princess Mathilde in an AIDS-related activity.


(From Li-xiang's blog)

But in all these reports and pictures, one thing remains, that Li-xiang has never shown his face to the camera. The reason he does that, is because he also wants a life of dignity, and tries not to let his parents and friends worry too much about him.

Self

Li-xiang, though with the aura as an extraordinary man, is in nature a common person, who just happened to run into a misfortune. He likes to talk about himself in most daily-life details.

我喜欢打游戏,除了空当接龙还喜欢打CS,不过打的很差。每天不超过30分钟的游戏有助于调节你的生活和心情。

I love playing games, not only freecell (a poker game), but also Counter-strike (a computer game). Playing games for less than 30 minutes a day will help adjust your life and mind.

He talks about what he dislikes:

我最讨厌自己的事情是,我生病时,有人到病房探视。我得像祥林嫂一样的重复治疗的情况。更令人懊恼的是,少数人并不是为这个来的。

What I hate the most is that when I am sick, people come to look after me, and I have to repeat how my treatment goes time and time again. What disappoints me more is that some one even come bearing other purposes.

Visitor will usually leave one or two comments.

终于又看到你发博文了,身体好了吗,一定注意啊,虽然首都医疗条件好,但还是得靠自身抵抗力强才好,依靠药物副作用太多.真心祝你一切都好! 周愿

Finally again I saw your blog updated. Do you feel better? Though Beijing has good health-care hardware, you have to really rely on yourself and a strong immunity. Too much side-effect with medicines. Sincerely wish you the best with everything! Zhou-yuan

Beautiful girls

Li-xiang confessed he loves beautiful girls. He also has a girlfriend named Wu, translated as “Dance”.

稍微了解我的人,都知道这样的传闻,李想喜欢美女。
有人向我求证的时候,我也会直接和直爽的说,是的,我喜欢美女。
幸甚至哉,我认识好几个这样的美女。当然不用说,其中有一个是我的女朋友。呵呵。如果连美女都不喜欢、不欣赏了,生活哪里还有什么希望?

Those who know about me all have heard that Li-xiang loves beautiful girls. When people ask me about the rumor, I will give a straight answer, “yes, I love beautiful girls.”
It’s lucky for me to know exactly some beautiful girls. It goes without saying that one of them is my girlfriend. Aha, what hope will life have if beautiful girls were no long liked and appreciated?

But some netizens left on his blog unfriendly comments on his love of beauty.

这个叫李想的博主真是非常之不要脸了 自己明知道自己的情况 还找什么美女做女朋友 这不是明摆想坑害人家吗?鄙视这样的人!!!!!!请为他人多考虑下吧 新浪网友

This blogger named Li-xiang is really shameless. He knows how he is but still find a beautiful girl as his girlfriend. Isn’t this meant to be harming her? Shame on him!!!!! Please be more considerate for others. Sina.com Netizen

But the remark met rebuttal from other netizens very soon.

李想.不要跟这些没道德与良知的人计较,人生有许多的不公平.你这么善良,聪明.却因为输血而感染.这不是你的过错,很痛心这个世上还有这些恶毒而狭碍的 人.他们不知道欣赏美同样也是一种善.他们不知道人与人之间除了肉体,还有精神的爱.他们的无知与偏执,他们空洞的精神,是无法理解你的, 新浪网友

Li-xiang, don’t bother to argue with this kind of people. Life could be much unfair. You are so kind, wise, but were infected with AIDS due to a blood donation. This is not your fault. I feel painful that there is so malicious a person in the world. They don’t know the appreciation of beauty is also a virtue. They don’t know besides bodily relationship, there is spiritual love. Their ignorance and bigot, are impossible to understand you. Sina.com netizen

Sometimes Li-xiang would disappear for a while. He explained to those care about him:

有一阵没有写日记,也好一阵没在博客上写文章了。不想说所有的原因都是因为忙碌,也有一些其他的原因,有时候有些低落,有时候有些茫然。是的,我不像你想像的那样有着铜像一样的坚强。我只是一个普通人,希望梦想有天终会实现。

For quite a while I have written no diary and blogs. It’s not all because I was busy, but for some other reasons. Sometimes I felt depressed, and sometimes at a loss. Yes, I am not as strong as bronze. I am just a common person with a belief that some day hope will come true.

Though his blog enhances his popularity, he still takes it as a simple platform for communication, and a window to look at the world.

我只是一个平常的俗人,博客只是一个看世界的角度,我不是一个顾影自怜自怨自艾或者要证明自己是多么无辜的病人,我的心理非常健康。更多的时间,我并不会扮演病人的角色。我似乎已经离开了病人,也离开了公众,成了两边都很熟悉的一个中间的人。

I am just a common man. Blogging is just another angle for me to look at the world. I am not a self-pity man to prove how innocent a patient I am. I am mentally healthy. In more time, I don’t play the role of a patient. I depart from the group of patients, and leave away from the public, just to be a man familiar to both groups.

This is Li-xiang life, plain, easy but active. As he said, “Now, though a lot of people think I am greatly unfortunate, I am, however, feeling like having the most meaningful life ever”.

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