
社会应给予更多的关怀,让艾滋病患者不再受歧视。记者 纪力元 摄
“电话接不通,就以为我死了?”他笑着说。
“我的生命不是你们想象的那样脆弱。”他依然笑着。
一面以自信和坚持向公众“创造着奇迹”;而在人生的另外一面,他无时无刻不想着如何更好地保护自己和家人,他在现实里有着另外一个完全不同的名字,除了医护人员,他绝对不会主动告知自己的感染者身份。
他是沈阳首例艾滋病感染者,孙奇。事实上,他也几乎成了沈阳艾滋病感染者这个群体的一个标本或是缩影。 2010年12月1日是第23个“世界艾滋病日”,也是孙奇感染艾滋病毒的第19年。
再活二三十年没问题
“对不起,您拨打的电话已停机……”,11月中旬,当本报记者再次拨打孙奇的电话时,电话里的提示音揪紧了记者的心。多日的寻找终于证实记者只是虚惊一场,事实上,孙奇依旧生活得按部就班。
11月24日挺冷,但这没影响孙奇早起的习惯,天还没亮,看到楼下路灯下那个熟悉的环卫工人已开始清扫,孙奇决定起身洗漱,同时把收音机调开,声音让孙奇感到亲切,他不喜欢太过安静。妻子也起床了,孙奇决定跟妻子去早市儿转转,顺便买点豆浆油条当早餐……
来不及跟妻子探讨早市的青菜究竟要比超市里便宜几角钱,孙奇的吃药时间到了,早7时,在收音机里开始广播新闻的时候,孙奇拿出两个白色的小药瓶,一瓶奈韦拉平片,一瓶齐多夫定片。 8年来,每天早上7点准时服用这两种药,晚7时孙奇还要服用一粒拉米夫定片,是孙奇生活中最规律的一件事,而在孙奇看来,定时服用抗艾滋病毒药物,是唯一能够证实他是一位艾滋病病人的事。
孙奇现在已经毫不惶恐,11月24日上午,孙奇在友爱工作组对本报记者说,“我只是一名需要长期服药的慢性病人而已”。对于“手机停机”的质疑,孙奇笑着反问,“电话接不通,就以为我死了?”这态度反倒令本报记者咋舌,孙奇比想象中要开朗和健谈,孙奇说,“我甚至都不怎么感冒,我的生命不是你想象的那样脆弱。”
的确,比起三年前记者采访他时,孙奇的气色更健康,他比那时胖了,而且不见老,他头发乌黑,比同龄人的白头发少得多。他每天早上7点多出门,骑电动车5分钟,到友爱工作组上班,下班后会到麻将社去打麻将,还常常呼朋唤友在家聚餐,孙奇很喜欢热闹……怎么看,怎么不像个病人。
曾经以为随时会死
孙奇在某种程度上是一个标本,这是很多感染者愿意靠近他的理由之一,新发现的感染者看到孙奇已经生存了将近20年,不再那么恐惧。而一些感染者更愿意从孙奇这里获取秘诀,“你是怎么活这么长久的?”
对比这些“有经验可循”的感染者,作为沈阳首例,孙奇经过的恐惧和不确定却充满绝望。
时间追溯到1991年,那是孙奇终生难忘的时间点,他的命运彻底被改变了。孙奇被派往西非某国工作期间突发牙病,在当地医院拔牙。谁知这竟然酝酿着孙奇人生中的一场滔天大祸。
1993年孙奇回国,在上海被确认为艾滋病毒感染者。当时孙奇没有生病征兆,他也没搞清楚这个听起来很恐怖的病除了“让人觉得害怕”,究竟会带来什么。之后孙奇在身体上一直没有出现特别的反应,这甚至令他怀疑是不是检测时出现了什么误会。
生活继续,但灰暗成了孙奇生活的唯一色调,在当时,关于艾滋病,他和家人的了解都是“随时就会死”,邻居们的了解仅限于“不是好病”。议论铺天盖地,卫生部门三天两头穿着白大褂来孙奇家消毒,一时间,孙奇关门在家,像只被关在笼子里的猴子,悲伤地接受看客们的指指点点。
他有一个月没出屋,睡得昏天黑地,当时他家住在平房,要去旱厕,孙奇总后半夜才去厕所。那感觉实在糟透了,“不是见不得人,是不知道见了人应该摆出什么表情,我是该哭呢,还是该笑,还是该面无表情?”
可孙奇并不知道,当初妻子承受的压力比他大得多,妻子一面劝慰丈夫好好活下去;一边要在卫生部门三天两头来到家里消毒、喷药水时,承受邻居们好奇和鄙夷的目光;儿子在压力巨大的环境中一天天长大,她还要负责解答儿子的询问,为什么邻居都说我爸要死了?
能够撑过那段岁月,孙奇感慨万千,自己能够坚持活下来,坚持听医生的话好好治病,都是妻子的不离不弃给了他勇气和力量。而妻子从没想过要离婚,妻子有句再朴实不过的话,每次提起都令孙奇眼圈发红,在孙奇每天睡得浑浑噩噩,动不动要死要活的时候,妻子没有责骂,而是哭着告诉孙奇,“你别闹了,就算告诉我,马上就能被传染上艾滋病,我也不会跟你离婚,你活着,毕竟还是个家”。
现在,孙奇的妻子已经退休,除了每月领取退休金,自己还兼职打工,赚着双份收入,儿子自己当老板做生意,马上就要结婚了。
很在意是不是被歧视
多年纠结于生死,孙奇的人生观从“凡事有规划”变得“珍惜当下和淡然”,在得知感染艾滋病毒后,孙奇认为所有人生规划都那么可笑,“现在我假设,如果我没有感染艾滋病,以我的脾气和性格,我现在或许会成为一个包工头儿”,然而,命运给孙奇设计了一场苦旅,在很长时间里,他始终觉得很快会死,“还规划什么呢? ”
可孙奇并非对什么都不在意,他的敏感无处不在。在接受记者采访时,孙奇给两位记者倒了两杯水,小心翼翼观察记者是否接受,直到看到记者喝下那杯水,孙奇的脸不再紧绷着。他主动拿出一本记录本递给记者,如果您不怕被感染,用这个记录吧。在跟记者告别的时候,每次都是记者先伸出手来,孙奇才会被动地来握手。
这些常人看似平常的细节,却都进了孙奇的心里,被他记住了。孙奇记得,2004年前后,一位领导接见包括孙奇在内的众多艾滋病感染者,孙奇很高兴,但当孙奇和几位感染者激动着上前表示握手时,那位领导却避开了他们的手……孙奇说,当时刚刚提出要关爱艾滋病感染者,但人们对艾滋病的恐惧和歧视根深蒂固,改变需要时间。
这是艾滋病的恐惧造成的,孙奇很理解公众的心理状态,如果人们不知道艾滋病只能通过性、血液、母婴三个途径传播,如果以为看一眼,说一句话,握一下手就能被感染,谁不躲得远远的呢?
2010年了,孙奇很高兴,他说近几年来,不只疾控人员肯跟他们包饺子,聚餐,很多志愿者也敢于与他们近距离接触了,这跟疾控部门多年来宣传“通用餐具不感染、握手不感染,甚至亲吻都不感染”的工作截然不可分。
该不该声明感染者身份
公众的恐艾情绪在淡漠,来自社会的歧视也在减弱,而曾经这是对感染者最大的心理伤害。
2000年深秋,孙奇的脚被撞伤,他去就诊,告诉医生“我是艾滋病毒感染者”。结果,只是因外伤住院的孙奇被安排在这家医院3楼最边上的病房。其他病人都被安排在别的楼层,整层病房只有孙奇一个病人。绝望,当妻子来送饭时,40来岁的大男人抱住妻子放声大哭,“我还不如死了。”这让孙奇很困惑,“如果脚被撞伤,都要被隔离,我怎么还敢告诉医生我的感染者身份呢?”但即使在当初,孙奇也做了决定,告知。
孙奇说,近年来,来自医护人员的歧视已经减少了很多,而他始终告诉感染者们,“在就医时应提前告知医生,我是感染者。”在孙奇看来,这是对医护人员,也是对社会负责任的行为。
但“是不是向所有认识的人都告知自己的感染者身份”?这也令孙奇颇感为难。孙奇最近就十分紧张,儿子马上要举行婚礼,未来儿媳妇还不知道孙奇是位艾滋病感染者,虽然孙奇健康与否,根本无关未来小两口的生活,孙奇还是很挣扎,怎么办?尽管在家吃药从不避人,但孙奇还是没有勇气去发个特别通知,告诉儿子未来人生中最重要的那个人,我是感染者……孙奇征求儿子意见后决定,顺其自然吧,“如果看到我吃药,而女孩问起,我们就实事求是地告诉她。 ”
要帮其他病友走出阴霾
因为与艾滋病感染者群体的同病相怜,孙奇了解感染者在不同阶段都要遭受不同的压力,在身体可能遭受机会性感染外,艾滋病感染者的心理和精神在三个阶段会出现极大的压力,这同样会要了感染者的命。
接触了众多感染者之后,孙奇知道,感染者最初都会产生自我厌恶,超过一半的感染者最初都想轻生;之后是感染者身份披露给亲人的时刻。因此,对于向友爱工作组进行心理求助的感染者,孙奇更懂得对症下药,知道不能流露出任何不重视。
而这个最初只对感染者进行心理疏导和进行治疗经验交流的工作组也在几年间逐渐变得专业,虽然他们还窝在一个不足60平米的出租房里接电话,组织活动,但他们的工作已新增关爱受艾滋病影响的人,增加劝诫那些HIV阳性人群不要去扩散病毒,进而减少其他人感染的危险。孙奇认为,同病相怜的人更让人信任,感染者们看到孙奇阳光正面的生活了快20年,很愿意听他的意见,也都希望和他一样好好活下去。而这,让孙奇觉得自己很有价值。
就这样,19年来,孙奇按部就班地生活着,尽管他在电话里,他始终被交叉着呼成两个名字,一个是“孙奇”,一个是与“孙奇”完全不搭边儿的名字;尽管每次接电话,孙奇都要停顿几秒来判断,电话来自身边一些不知他底细的人,还是艾滋病感染者群体;尽管他依旧说错话,怕给妻子和儿子带来不必要的麻烦,但是在采访的最后,孙奇笑得很阳光,他告诉本报记者,等我儿子结完婚,我要以我真实的名字,接受你的采访。
相关链接
2010年12月1日是第23个“世界艾滋病日”。昨日,沈阳市疾病预防控制中心发布称,沈阳市艾滋病疫情特点是艾滋病的流行态势和全国的形势一致,仍呈上升趋势,上升的趋势有所减缓。传播途径以性传播为主,其中主要为男性同性传播,超过60%。
记者 经淼
Shenyang, the first case of AIDS, "double" life
2010-11-30 09:01:01 Source: Liao Shen Evening News
Community should give more care to AIDS patients are no longer discriminated against. Millennium Force Element photo journalists
"Phone connection unreasonable to think that I'm dead?" He said with a smile.
"My life is not as fragile as you think." He was still smiling.
Side of the self-confidence and persistence to the public "to create a miracle"; while the other side of life, he never fails to think about how to better protect themselves and their families, who in reality has a completely different name, in addition to medical staff, he will not take the initiative to inform their infection status.
He is the first case of HIV infection in Shenyang, SUN Qi. In fact, he almost became infected with HIV in Shenyang, a specimen of this group or microcosm. December 1, 2010 is the first of 23 "World AIDS Day", SUN Qi HIV infection is 19 years.
No problem twenty or thirty years to live
"Sorry, you dialed down ... ...", 11 mid-May, when our reporter again, SUN Qi phone call, the phone beep clench a reporter's heart. Finally confirmed several days looking for a reporter just a false alarm, in fact, SUN Qi still live step by step.
November 24 quite cold, but this did not affect the SUN Qi habit of getting up early, still dark and saw the familiar under the lights downstairs sanitation workers began cleaning, SUN Qi decided to get up washed at the same time to mix the radio, sound SUN Qi was so friendly, he does not like too quiet. Wife got up, SUN Qi decided to go to Morning children with his wife around, Shunpian Mai milk fritters for breakfast ... Point ...
Time to explore the morning market of vegetables with his wife what a few cents cheaper than the supermarket, SUN Qi's time to take medicine, as early as 7 am, the radio began broadcasting news when SUN Qi small bottle out of two white , a bottle of nevirapine tablets, a bottle of zidovudine tablets. 8 years, 7 o'clock every morning on time to take these two drugs, 7pm SUN Qi also taking a lamivudine tablets, is the most regular SUN Qi living thing, and in the SUN Qi seems regularly taking anti-HIV drugs, is the only confirmed that he is a thing of AIDS patients.
SUN Qi is now no fear, the morning of November 24, SUN Qi in the fraternity, said the working group, told reporters, "I'm just a long-term medication for chronic diseases who need it." For the "cell phone down" of the question, SUN Qi asked with a smile, "phone connection unreasonable to think that I'm dead?" This attitude turn out to be the reporter speechless, SUN Qi to be cheerful and talkative than expected, SUN Qi said, " I do not even how cold, my life is not as fragile as you think. "
Indeed, compared to interview him three years ago, SUN Qi's color is more healthy than he was fat, but not see old, his hair black, white hair than their peers, much less. 7 o'clock every morning he would leave the house, 5 minutes ride electric vehicles, to the love of the Working Group to work, after work to play mahjong mahjong community, often Hupenghuanyou dinner at home, SUN Qi like excitement ... ... how to see, how does not like patients.
Moment would have thought
SUN Qi is a specimen in a way, this is a lot of infected people are willing to close one of the reasons of his newly discovered infections have survived to see SUN Qi nearly 20 years, less fear. Some infected people are more willing to get tips from the SUN Qi here, "how you live so long?"
Contrast these "have experience to draw" the infection, as the first in Shenyang, SUN Qi through the fear and uncertainty are filled with despair.
Time back to 1991, it was unforgettable time SUN Qi, his fate has been completely changed. SUN Qi was sent to a country in West Africa during the emergency dental work, tooth extraction at a local hospital. Who would have thought that even SUN Qi brewing monstrous life of a disaster.
SUN Qi back in 1993, in Shanghai, was identified as infected with HIV. SUN Qi was no sign of illness, he did not understand this sounds horrible disease in addition to "make people feel afraid of," What will bring. SUN Qi in the body then has been no specific response, which made him suspect that is not even detected what appears misunderstanding.
Life continues, but the only dark colors become SUN Qi life, at the time, about AIDS, knowledge of him and his family are "ready to be dead", the neighbors only knew the "not a good disease." Debate over the place, wearing a white lab coat every few days to the health sector SUN Qi home disinfection, for a time, SUN Qi close at home, was like a monkey in a cage, sad to accept the spectators who will react.
He did not out of the house for a month, sleep in pitch darkness, when he lived in the cottage, go to toilets, SUN Qi always late at night before going to the toilet. It feels really bad, "is not shameful, met people do not know what expression should be put on, I was the crying, or the laugh, or the poker-faced?"
SUN Qi can not know that when his wife is much greater pressure than his wife to comfort her husband live on one side; side to come home every few days in the health sector, disinfection, spraying water, the subject of curiosity and despicable neighbors eyes; son in stressful environments grew up, she would also be responsible for answering his son asked why the neighbors said that my dad was going to die?
Able to get through those days, SUN Qi filled with emotion, they can adhere to survive, adhere to the doctor, then a good treatment, are never betray his wife gave him courage and strength. Never thought to divorce the wife, the wife and then saying the words, however simple, have each filed SUN Qi eyes were so red, sleep every day in the SUN Qi Hunhunee and always die to live, when his wife did not scold, but SUN Qi cried and told, "you're kidding, even told me that'll be able to be infected with HIV, I will not divorce you, you are alive, after all, still a home."
Now, SUN Qi's wife has retired, in addition to a monthly pension, he still part-time work, earn a double income, the son of his boss to do business, soon to be married.
Very concerned about is not being discriminated against
Entangled in the life and death for many years, SUN Qi's life from the "everything planned" to become "treasure the moment and take it lightly," after learning of HIV infection, SUN Qi that all life planning are so ridiculous, "Now I assume that if I not infected with HIV, with my temper and character, I might become a labor contractor child ", however, the fate of a Journey to the SUN Qi designed in a very long time, he always thought would soon die," also planning what? "
SUN Qi can not nothing about his sensitive everywhere. In an interview with reporters, SUN Qi down to two cups of water two journalists, reporter observed carefully whether to accept until you see the reporters drank the glass of water, SUN Qi's face is no longer taut. He took the initiative and handed out a record of the press, if you are not afraid of being infected with this record it. Farewell with reporters at the time, every time a reporter asked to reach out, SUN Qi will passively to shake hands.
These seemingly ordinary details of ordinary people, they are nothing but SUN Qi into the heart, which he remembered. SUN Qi remember that before 2004, after a meeting with the leadership, including SUN Qi, including many people living with HIV, SUN Qi very happy, but SUN Qi and several infections, said excitedly stepped forward to shake hands, but lay leaders who opened their hands ... ... SUN Qi said, had just proposed to care for AIDS, but people fear and discrimination against AIDS entrenched, change takes time.
This is caused by fear of AIDS, SUN Qi understands the public's state of mind, if people do not know that AIDS can only be through sex, blood, mother to child transmission of the three, if you look at that, a word, hold your hands will be able to infection, who do not stay away from?
2010, and SUN Qi very happy, he said, in recent years, CDC staff is willing to tell them not just dumplings, dinner, a lot of volunteers dare close contact with them, which over the years with the disease control department of propaganda, "General Tableware not infected, the handshake is not infected, and even kissing are not infected, "the work can not be separated completely.
The identity of infected persons should not be declared
The public's fear of AIDS in indifferent mood, from social discrimination are reduced, and once infected with this is the greatest psychological damage.
Late autumn 2000, SUN Qi bruised foot, he went to treatment, tell the doctor, "I am living with HIV." The results, SUN Qi is hospitalized due to trauma in this hospital was arranged 3, the edge of the ward. Other patients have been arranged in other floors, the whole floor SUN Qi only one patient wards. Despair, when the wife to bring food, the 40-year-old big man clinging to his wife burst into tears, "I might as well die." This is very confusing to SUN Qi, "If the foot is injured, have been isolated, how do I I dare to tell the doctor infected with identity? "But even in the beginning, SUN Qi also made a decision, let us know.
SUN Qi said that in recent years, discrimination has been reduced from the staff a lot, and he always told those who were infected, "the doctor should be informed in advance by a doctor, I was infected." Appears in the SUN Qi, which is health care workers, but also socially responsible behavior.
But "is not known to all who are informed of their HIV status?" This also SUN Qi quite difficult. SUN Qi very tense recently, the son of the wedding to be held soon, the future did not know SUN Qi is a daughter living with HIV, although the Sun Qijian health or not, has nothing to do the next couple of life, SUN Qi still struggling, how do ? Although never at home to avoid medication, but SUN Qi, or the courage to send a special notice, to tell his son the future life of the most important man, I was infected ... ... SUN Qi decided to seek the views of his son, let it go "If you see me take medicine, and the girl asked, we told her to seek truth from facts."
To help other patients out of the shadows
Because AIDS groups the same boat, SUN Qi learn at different stages of infection should be subjected to different pressures, in the body may suffer from opportunistic infection, HIV-infected persons in the three stages of psychological and mental stress will appear greatly Again, this will be the infected person's life.
After exposure to a large number of infected persons, SUN Qi know, the initial infection will have a self-loathing, more than half of those infected initially wanted to commit suicide; after the disclosure of the identity of infection to the time of their loved ones. Therefore, the Working Group to the fraternity of psychological help those infected, SUN Qi know how to remedy, that does not reveal any attention.
And this initially infected persons were treated for psychological counseling and exchange of experience among the working group also gradually becoming years of professional, although they also nest in a less than 60 square meters of rented room to answer the phone, organizing activities, but their work Added care persons affected by AIDS, increase HIV positive people who exhorted not to spread the virus, thereby reducing the risk of infection of other people. SUN Qi believes that more people trust people the same boat, they see the Sun Qiyang HIV positive light for nearly 20 years of life, I am willing to listen to his views, but also want to be like him live on. And that feeling of great value to SUN Qi.
In this way, 19 years, SUN Qi live step by step, even though his phone, he always calls into being crossed two names, one is "SUN Qi", one is the "SUN Qi" not take the edges of the name; although each phone, SUN Qi stop for a few seconds to determine the telephone number from the side who do not know his bottom line, or groups of people living with HIV; though he still says the wrong thing, afraid to bring his wife and son do not the necessary trouble, but in the end of the interview, SUN Qi smile very light, he told this reporter, and when my son married end, I want my real name, accept your interview.
Related Links
December 1, 2010 is the first of 23 "World AIDS Day." Yesterday, Shenyang Center for Disease Control and Prevention released, said, Shenyang City, is characterized by the AIDS epidemic the AIDS epidemic situation and the situation in the country the same, still on an upward trend, the rise has slowed. The main route of transmission to sexual transmission, mainly for the male homosexual transmission, more than 60%.
Reporter by Miao
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