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煤城故事1-3  乌辛堃

(2011-12-04 13:11:16)
标签:

杂谈

煤城故事(1)——20/20

当A查出他是感染了HIV,他的CD4是已经低得有生命危险了。其实很明显他在几年前已经感染了,医院也已经提示了他,他就是一直不愿意去政府的疾控中心去做检查。

小李是一位太原同志社区组织的志愿者,蓝典工作组在一年多前就开始提供优质快检的服务。A就是他那个时候帮助过的人。小李回想他一开始时,一点也不以为然,“…可是谁知道我第一个检测的,结果就是阳性。第二个又是阳性。第三个也是阳性。”

优质快检要求一定要提供“全程陪同”,凡是查出来是HIV+就要有一个月的支持。因为有了小李的陪同,A也就愿意去疾控中心接受确证检测了。可是没有预料的是他当时的CD4数量只有20了,需要马上上药。十个月后,他的情况大有改善,CD4回升到160。就这样,原木和小李的项目救了一命。

小李见过A颈背上长的红红的疱疹,“我其实以前从来没有见过感染者,我也不知道自己会不会害怕。”小李很坦诚地说他的以前,“我以前是不肯出柜的,我是准备要结婚生孩子。可是后来听人说了有原木和那个谈心小组的活动,我参加了之后,一切都改变了。”

我很难想象小李会是一个不肯出柜的隐性人群。他给人的印象就是阳光,亲切,和充满朝气。 他工作和生活在一个产煤的城市,一个非常保守的地方,可是他向家人承认了自己是同性恋。他所有空闲时间,开着一辆灰尘蒙蒙的小面包车满城跑,都放在帮助那些寻求优质快检的人身上。

其中一个小李帮助的人是24岁的L。L个子瘦弱,笑容带着一点羞涩,为了让他的父母骄傲,愿意像他爸一样,当一名矿工,从早上五点半到晚上五点半,深埋地下,一天不见阳光。

当L知道自己感染了艾滋病,心中无限悔恨。他一辈子只有过一次不安全的性接触,而且是和一个他以为会给他终身幸福的人。Gay的人生就是残忍和痛苦,他想不通这一切,他将来还是要结婚生子,可是一个感染者怎么可能?

我接到原木的消息,说最近查了70人中发现有14名阳性。根据中国的统计,男同性恋者的平均感染率是大约5%,可是突然间,他们服务人群中有20%感染艾滋。原木的消息其实是一个求救的信号。

太原离开北京是4个小时的火车,那就连续去他们那边三个星期吧。我可以去带领一个阳性的谈心活动,帮助新发现的感染者。我很相信人与人之间,是可以互相学习,彼此启发,只要设立好一个安全的环境,小组讨论是有一定的作用。

我们都坐在原木的工作室里,第一次听L分享他的故事。我不自禁地想,这孩子真可怜,他犯的罪不过是想要被爱一下,被触摸一下,他得的惩罚是终身的侮辱。“我不能告诉我父母的,我们的邻居知道了,会怎么说?”

第二次我们小组见面,L说了他对未来的想法,他要隐藏他的秘密,他要结婚,噢这些压力,太重了。我提议他看看在座中的其他朋友,其中一位是已经结婚又有孩子的爸爸。马上这个年龄稍长的朋友就接着我的提示说下去,“我整天提醒自己不要去碰我的女儿,怕我会一不小心传染给她。”

这个煤城好像是中国同志命运的一种寓意,大家都封闭在一个灰尘朦胧的环境中生活,能看到的只是当前的状态,能听到的只有身边的议论。不过最黑暗的地方,也就是有勇气有爱心的人最能发出光亮的地方。

20天后,是我们小组第三次见到L,谈话都已经谈了几乎一个小时了,他才不经意地来一句,“…我已经跟我的父母说了我的情况了…” 等等,等等,大伙异口同声地喊,“你刚才说什么?”

 

煤城故事 (2) ——秘密

坐在旁边的那个年轻人真好像有点缺乏社会经验,L一辈子只有一次离开他的老乡太原,那是他上大专最后一年,在北京找到一份暑期的销售工作,“我当时只问家里人要了车费,什么都没有,就去了北京,我现在想起来也不知道自己当时是怎样想的,我只是很想很想要离开家里。”他在外的两个月给了他不少愉快的回忆,之后就接到家里的通牒,说已经安排好了煤矿的工作。

“等等, 等等,你是怎样告诉你父母的?你说了什么?当时的情况发生了什么?”虽然我带头问L,其实我只是一个代言人,所有在场的人都想着同样的问题。三个星期前他第一次来参加座谈时,他是很坚定地说不能让家里人知道他是个感染者。现在怎么他说已经跟父母说了?他怎可以等我们都已经座谈了一个多小时了,才告诉我们他跟父母摊牌?

 “我说我感染了艾滋,他们不相信我,以为我想找借口不去工作。”他不明白为什么他的父母不像我们所猜想那样的反应,完全没有慈爱的表现。“他们说我只是感染上一点点毛病,很快就会好的。”

中国做了近十年的宣传工作,L的父母以为艾滋病是个小感冒?他很失望他的父母不理解,所以他一直不想跟我们说。房间里坐着的每一个人都很激愤,都想要马上出计,帮他解围,“带他们一起去医院,让大夫告诉他们你真有病。”大家一致同意他一定要积极应对。

一周后我们又在小组座谈见面了。我第一句冲口就说,“你的气色好好呀。”除了他看起来好多了,讲话、笑容也都多了。

“嗯,我可以睡了。”

自从检测出来结果,这两个月里藏在心中的秘密让他一直失眠,在他的情况下,“我可以睡了”是多么珍贵的几个字。

不过没有,他没有听从我们制定的攻势。他的妈妈有一天晚上哭了,家人也对他特别关心,他也就不忍心让他的父母承受他的病情实况,“我每一天早上都吐,而且整天混混沌沌的。”L服用抗病毒药物已经有两个月了,应该会看到一点点好转的吧,每一天都要呕吐这绝不是一个好事。

正好我们一个星期后都在北京,所以也邀请L一起赴京去做一次检查。原木和李澜就马上运动手指,开始拨电话。ARFC曾经资助过阳光医生的创立人张可医生,是一位有名的艾滋专家,就在北京的佑安医院看症。

到了去医院的前一个晚上,跟L在北京见面了。我们一起在地铁里,我注意到他少了一个拇指,他会习惯性地把左手握成一个拳头。我思考了一下,就直直地问,“这是什么时候发生的?”

“在我还没有记忆之前,大概是三四岁吧。”一次农用工具造成的意外。

“你总是这样握紧着拳头吗?”

“习惯了,这样,人家不会注意到。”

“我可以看看你的手吗?”他打开一只四个手指的手掌。

“二十年, 你要握紧着拳头,难以想象你的内心感觉。”

他随着我的思路说下去,“不自信,感到跟人家不一样,我不想人家知道。”

“再加上你是gay,现在有感染了艾滋。”我毫无困难地盘算他的人生问题。

“是的,有时候我真想飞走,让我飞出去一次,寻找自己的世界。”一个男人温文的口中透露出一个孤独男孩内心的渴望。

“或者你已经在飞了,命运真很奥妙,你也听说过塞翁失马的故事吧,你的父母现在也同意让你改换工作了,你也有更多可以倾诉的朋友了。要不是因为感染艾滋这么大的一个事情,你可能一辈子生活在一个你厌恶的生活圈子里。”

“是的,我们每天工作都在地底下30米,又湿又冷,还有电动吹风机一天到晚开着,我真是很讨厌那种生活。”那是地狱般的生存。

“可是你会一直忍受下去,就好像你一辈子有知之年一直是握紧着拳头过日子。你认为这样就是做男人、做儿子。现在你再也不需要了,艾滋和坦诚改变了这一切。”

秘密,无论是能看见的或看不见的,都拥有摧毁力,它的武器就是因为它是秘密。当L扩开了,他就再也不是秘密的奴隶了。

他回我一个诚心的笑容,“对,我再也不需要了。”

 

煤城故事(3)——D字带头

我的一个国外朋友杜医生曾经给我一个PPT,其中有一张片子说,“小心所有D字带头的药物,例如d4T和ddI。”

在一个阴凉的星期一早上,我们一行人到了佑安医院,这是北京和中国最好两家传染病和艾滋病的医院。我去过这家医院好几次了,可是从来没有跟人去看过病。

张可医生带我们进去一间会诊室。他大概从来没有考虑过镜子的存在价值是什么,一簇头发直往天奔,大家是朋友好几年了,我毫不避违地观赏他的卧房型卖相。可是他很惊奇看见我来了,“不是你要来看病的吧?”他以为我感染了。李澜抢着说,“他要是有病,也不会来看你。”张回头一望,“不看我,看谁去?全中国就这么几个医生懂艾滋病。”我一面思考他所说的话,一面看着他露出衬衣外的内裤裤头。

张大夫了解我们带来一个病人,问了L一堆问题。L早上吃的东西都吐出来,而且疲倦乏力。张表现严肃,“你可能对你的药物有反应,有可能是乳酸中毒。你先去抽血检查一下,或者有需要住院。”然后又加了一句,“这会有生命危险。”

我本来是计划的是北京一日游。现在我们穿过后门,抄着小路,无语地在医院里胡同游。我回想刚才医生和病人之间的对话。

“你在吃什么药?”

“司他夫定,拉美夫定,和奈韦拉平。”

司他夫定就是d4T,d字带头的药。“这种药在世界上很多国家都不用了,中国还是在用。”张大夫的解释有点像抱怨,“它会引起很多副作用,其中一个就是血液里积累过多的乳酸。”

L并不是一开始就用这个药。他有另一种抗病毒药物的配方,可是几个星期后,他的白细胞稍微偏低,太原的疾控就给他换了吃d4T。抗病毒治疗就好像读菜谱,只要对照一个表格,看见有某些反应,就从一号方案换到二号方案,可简单了。 有时候可以更少功夫,药柜里有什么药,就给病人什么药。我的解释就是抱怨。

要不是我们邀请L来北京玩,他可能真的在不知不觉中就有生命危险了。想想还不止是这样,要不是我们存有这么多电话,要不是原木叫我们去做小组座谈,要不是L找到一个做快检的社区小组,要不是我们在一年半前开始了优质快检,他可能就有问题了。一个接着一个的偶然,才救了一个人。

可是,会不会这些都不是偶然?命运有它的一套,给心存慈悲的人机会去帮有需要的人,是为乌子宿命论也。

要等一天才可以拿到验血报告。张大夫还是跟昨天一样,只是他的头发指着的方向不同了。我们用的一间会诊室跟咱家的厕所差不多大小,里面有两张排在一起的桌子。张大夫还没有开始说话,就进来了一个穿白袍的医师命令我起来,“别坐这。”她坐下开电脑,她的两个病人找到了一把板凳。对我这个外国人来说,这真是太不可思议,两组艾滋病人同时共用一个房间会诊。我不还说了?这是全中国最好的艾滋病医院之一。我回神过来听张大夫说话,“你的乳酸程度不是太严重,你可以回家,多吃钙片和维C,我给你写下要换的药,你回去你那边的疾控说你去了北京看了张可就行了。”

一个星期后,我打了一次电话给L,他说自从停了司他夫定他感到好多了,然后他说,“我去了疾控,他们说没有问题,可以换回本来的方案,我现在在等新一批的齐多夫定运到。”什么?会不会他当初换药是因为他们那边没有存货?

我还没有机会去多思考我心中的疑问,就接到一个郑州打来的电话,“我这星期刚查了九个人,五个是阳性。你能不能过来做一次小组座谈给我们看看。”我赶着出去买往郑州的火车票。

 


 

Story from a Coal-mining Town(1)—20/20

When Mr. A diagnosed with HIV, his CD4 count was dangerously low. Apparently, he contracted HIV some years ago. But he was too afraid to go to the government CDC to get tested, although hospital staff had already hinted to him that he should.

Li volunteers at a local gay community organization started by an activist, Yuan Mu, in Taiyuan. They began providing Quality Rapid Test a year ago. A was one of their early clients. Li recalled those days of few worries, “…but then, the first person I tested was positive. The second one was positive. And the third one was again positive.”

The protocol of Quality Rapid Testing is sort of like forming a buddy system for those who test positive for HIV. With Li accompanying him, Mr. A went to CDC willingly. The testing result was alarming. His CD4 count was 20. He was put on ARV therapy immediately. 10 months later, his CD4 bounced back to 160. The service Yuan Mu and Li provided literally saved his life.

Li had seen the skin rash up and down Mr. A’s neck and back, “When I first started doing rapid testing, I have never met anyone with HIV. I didn’t even know whether I would be afraid of them or not.” Li was candid about his past. “I was actually very closeted. I thought I would have to marry a wife and raise a kid one day. But then, I was invited to join Yuan Mu’s Heart Talk group. Everything changed.”

I could never picture Li closeted. To me, he has always been outspoken, caring, and fun. Although he lives and works in a very conservative coal mining city, he has come out to his family as being gay. He spends all of his spare time, driving his dusty van all around town, to help the people he met through QRT.

One of them is a 24 year old young man, L. L is thin and delicate, with bright eyes and a beautiful smile. He dreamed of making his parents proud, so he works in a coal mine just like his father, trapped underground from 5:30 in the morning to 5:30 at night, never seeing daylight.

L was devastated when he found out that he was HIV+. He only had one unprotected sexual encounter, with a man he thought he could love. Being gay is cruel and bitter. He couldn’t comprehend any of it. He will have to get married. But how, he now has HIV?

I got a message from Yuan Mu. Li and he recently tested 70 people and found 14 of them HIV+. China’s average HIV rate among gay men is about 5%, but all of a sudden, they have discovered 20% of their clients with HIV.  It was an SOS message. They needed help.

Taiyuan is four hour train ride away from Beijing. I decided to go to Taiyuan three consecutive weeks to lead a group discussion for people who are newly diagnosed with HIV. I am a big believer in group dynamics. I think people will automatically learn and be inspired by each other if we create the right setting.

We all sat in Yuan Mu’s office where I heard L share his story. I couldn’t help but think that the crime of this young man was wanting a little bit of love and touch. He was sentenced to a life time of shame and pain, “I can’t tell my parents. How would our neighbors think of us if they knew?”

On the second week, L talked about his future plan. He had to figure out how to get marry and conceal his illness to family. O, all that unbearable pressure. I asked him to look around the group. There was another man who is married with kids, and with HIV. Was his life easier than L? As if on cue, the older man spoke, “I constantly have to think about not touching my daughter. She may accidently get my virus.”

Gay life in a coal mining town brought out some truth about China. People live in such a cloistral and grimy environment that their vision is restricted to only the immediate present and their hearing is distorted by the murmur of their neighbors. But it is in the darkest places that the compassion and courage of those who care and dare would shine.

20 days later, the support group met for the third time. After almost an hour of conversion, L nonchalantly dropped a line in mid-sentence, “…I have told my parents about me…” Wait, back up. Everyone in the room shouted out together, “what did you just say?”

 

Story from a Coalmining Town (2) —Secrets

Sitting beside me was a young man who seems to have little understanding of the world. The only time L left his home town Taiyuan was his senior year in college when he got a summer sales job in Beijing. “I only asked for the train fare, nothing else. Off I went. I didn’t even know how I did it. I really wanted to leave home.” His two-month excursion left him with sweet memories. Then he was called back. His parents had lined up a job in the coal mine for him.

“Back up, back up. Did you say that you told parents? What did you say? How did it happen?” Although I led the charge in questioning L, I felt I was speaking for everyone in the discussion group. Three weeks ago when L came to the group for the first time, he was adamant about not telling his family that he was HIV positive. Now he just told us that he had let his secret out? How could he have waited a whole hour before breaking the news to us?

“I told them that I have AIDS. But they didn’t believe me. They thought I didn’t want to work and I made up an excuse.” He couldn’t understand why his parents didn’t react the way we said they would. “And they thought that I just had some kind of infection and I would get over it soon.”

That was sobering. After almost a decade of HIV awareness public campaign, L’s parents thought that AIDS was like flu? He was upset that they didn’t take him seriously and that was why he didn’t say anything at first. Everyone in the room jumped into scheming mode, suggesting what he should do to make his parents understand. “Take your parents with you when you go to the hospital. They will have to believe the doctors.” We all agreed that being proactive was the only way to go.

A week later, I saw L back in the group. “You look good,” I said the first thing that came to mind. Not only did he look better, but he also smiled more and talked more.

 “Yeah, I can sleep now.”

The dark secret he carried for two months since he found out that he has HIV caused severe insomnia. I-can-sleep-now are four precious words for anyone in this situation.

And no, he didn’t heed our battle plan. He felt remorse when he saw his mother weep one night. His parents came around and became very supportive. He didn’t want them to know the seriousness of his illness. “I still throw up every morning and feel drowsy most of the day.” L has been on anti-viral meds for two months. He should have seen improvement already. Throwing up every day was certainly not a good sign.

So happened, we would be in Beijing the week after and so we invited L to join us. It would be good for him to do a check up there. Yuan Mu and Li Lan let their fingers do the walking and started calling. One of ARFC’s grantees Dr. Zhang Ke, the founder of the Sunshine Doctors, is a renowned HIV specialist in a Beijing hospital.  

On the night before the hospital visit, I saw L in Beijing. We were riding on the subway when I noticed that he had a missing thumb. He always balled his left hand up into a fist. After a moment of calculation, I asked bluntly, “when did this happen?”

“Before I could remember, may be when I was three or four.” It was caused by a farming machine.

“And you always hold your hand this way?”

“I just got used to it. It was less noticeable.”

“Can I see your hand?” He extended his four-fingered palm. “For twenty years, you have to hold it in. I can’t imagine how that would make you feel.”

He followed my train of thoughts, “Insecure, like I was different. I didn’t want anyone to know.”

“And on top of that, being gay. Now, HIV.” I had no problem adding up his issues for him.

“Yes. I wish I could fly. Fly away just once. Find my own world.” The longing of a lonely boy came out of a mild speaking man.

“But maybe you are flying. Fate has a strange way of unfolding. You know the story of an old man losing a horse? (An old man’s lost horse brought back a mate, and everyone congratulated him. Then his son got into an accident while riding the new horse and lost his leg. Everyone felt sorry for the old man. The war came but his son wasn’t drafted. The old man told his friends, ‘Do not judge too quickly, misfortunes are maybe blessings in disguise.’) Your parents now agree to let you switch jobs. You met more friends you can talk to. It takes something as big as HIV to change your life. You would, otherwise, be trapped in a life that you hate.”

“Yes, we are 30 meters underground. It was cold and damp. An electric fan keeps a breeze going all the time. I hate it.” He recalled the hell-like existence in the mine.

“But you would let that life go on, just as you hold your fist for your entire conscious life. You thought that’s the way to show how to be a man and a son. Now you no longer have to. HIV and honesty changed that.”

The devastating power of secrets whether visible or invisible, is that they are secrets. Once L let it go, secrets could not enslave him.

He returned a full-hearted smile, “Yes. I no longer have to.”

 

Story of a Coalmining Town (3) —Starting with D

My friend Dr. Tri Do once sent me a Powerpoint on HIV meds.  One of the slides says, “Avoid drugs starting with D, such as d4T and ddI.”

On a bristly Monday morning, we accompanied L to You’an Hospital, one of the two premiere HIV and infectious disease hospitals in Beijing and in China. I have visited this place a number of times but have never been there with a patient.

Dr. Zhang Ke walked us to an empty examining room. I wonder if he had ever considered the value of mirrors. He was totally unkempt, with hair sticking straight up. I had no trouble laughing at this bedroom look since we have been friends for awhile. But he was surprised to see me, “It’s not you who wants to see me, right?” He thought I had turned HIV+. Li Lan said to him, “if he was sick, he wouldn’t come to you.” Zhang turned to her quickly, “Who else can he go to?” There aren’t many doctors in China who understand HIV. I realized what this man was saying while I took in the sight of his underwear waistband showing outside of his shirt.

After Dr. Zhang learned about our true intent, he asked L a bunch of questions. L had not been able to hold his food down in the morning and he was lethargic all the time. Zhang turned serious, “You may be having a reaction to your meds. I think you may have developed lactic acidosis. We’ll see if you need to be hospitalized once we get your blood tested.” Off-handedly he added, “it could be life threatening.”

I had planned a day of fun in Beijing. Now we were marching through back doors and buildings to different parts of the hospital in silence. I recalled the scene earlier with the doctor and the patient.

“What kinds of meds are you taking?”

“Stavudine, lamivudine, and nevirapine.”

Stavudine is d4T, a drug starting with D. “This drug has been phased out in most parts of the world. But China apparently is still using it.” Dr. Zhang’s explanation sounded more like a complaint. “It causes a lot of side effects, and one of them is excessive lactic acid built-up in the blood.”

L did not start with this drug. He had another combination of antiviral drugs. After a few weeks, his white blood cells were slightly below normal. Taiyuan’s CDC switched him to a new regiment with d4T. HIV management is made simple by following recipes. Look for certain signs, and then switch between formula one and formula two. Sometimes it takes less effort than that. Patients are sent home with whatever drugs happened to be on the shelves. My explanation is a complaint.

L’s life could be in jeopardy, had we not invited him to Beijing. Not just that, his life could be in jeopardy, had we not have a splendid rolodex, had Yuan Mu not asked us to start a support group, had L not gone to a community group for testing, and had we not started rapid testing 18 months ago. It takes too many coincidences to help a person.

But what if they were not coincidental? Destiny has a way to reward those who show Desire for compassion by sharing the Demand of those in need. How ‘bout that, coming up with my own 3-D model?

It required 24 hours to get the blood test report back. Dr. Zhang Ke looked similarly disheveled as the day before, other than the fact that his hair was pointing at a different direction. We walked into an exam room the size of my bathroom, with two decks butted together. Before Zhang could announce his verdict, a woman in a white robe walked in with two patients. She barked her order to me, “Get out of the chair.” She sat down and clicked on the computer, while one of her clients found a stool to sit on. This was totally alien to me. I had never seen two sets of people seeing doctors in a single room before. Did I not mention this was one of the best AIDS hospitals in China?  I had to remind myself to pay attention to what Zhang’s saying, “Your level of lactic acid is not so high that we have to keep you here. You can go home. Take calcium and vitamin C. I will write you a new instruction for your CDC.”

A week later, I called L up and he said he felt better than ever once he stopped using d4T. Then he added, “I went to the CDC and everything is OK. I am waiting for a new shipment of AZT.” What? Was it because AZT was out of stock at the CDC and he was put on d4T?

I hardly had time to ponder my suspicion further. I got a call from Zhengzhou, “I tested 9 people this week and 5 of them were positive. Can you come and show us how to facilitate a support group?” I went out and bought a train ticket to Zhengzhou.

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