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看似不幸的生活

What Disabled Children Teach Us
看似不幸的生活

At night, Ian Brown’s 8-year-old son, Walker, grunts as he repeatedly punches himself in the head and ears.

深夜,伊安·布朗(Ian Brown)8岁大的儿子沃克(Walker)不停捶打自己的脑袋和耳朵,口中喃喃自语。

His face is distorted, with an over-large brow, sloping eyes and a thick lower lip. He cannot speak. He cannot eat solid food, and takes in formula through a tube from a feedbag powered by a pump. The tube runs through a hole in his sleeper into a valve in his belly. When Walker’s own punches begin to awaken him, his father must disconnect the tube and lift the 45-pound boy out of his crib, carry him down three flights of stairs and try to coax him back to sleep. He also must change Walker’s ballooning diaper, as the boy is not toilet trained, and prevent him from smearing excrement every­where. He then feeds him a bottle and tiny doses of Pablum. The kitchen is covered with the film of Pablum dust. Brown’s tasks are performed as quietly as possible so as not to disturb his wife, Johanna, and Walker’s older sister, Hayley. In the first eight years of Walker’s life, neither parent slept two uninterrupted nights in a row.

他的面孔扭曲,额头特别大,双眼倾斜,下唇肥厚。他不会说话,不会吃固体食物,只能通过喂食管从一个用泵抽压的喂食袋中摄取配方奶。吸管从他睡袋上的洞里穿过,直接注入装在他腹部的一个阀门。沃克把他自己打醒的时候,他的父亲就得把管子摘下来,将这个45磅重的男孩从摇篮里抱出来,抱着他爬下三段楼梯,把孩子重新哄睡。他还要换下沃克已经很沉的纸尿裤,因为他一直没学会上厕所,同时要避免把孩子的排泄物洒得到处都是。然后他会喂一瓶配方奶给孩子,里面冲了一点Pablum牌麦片。厨房的地面上不小心洒了一层麦片碎屑。这一切布朗都得尽可能悄无声息地来做,免得吵醒了他的妻子乔安娜(Johanna)和沃克的姐姐海莉(Hayley)。在沃克出生的头八年里,他的父母从没连睡过两晚整觉。
 

Brown begins “The Boy in the Moon” this unsparing way because he wants to fling us into his story, alongside him and his family, and because as a writer he knows that an account of the plain facts will bring us to our knees more efficiently than a dressed-up version. Walker (the sad irony of the name) was born with cardiofaciocutaneous syndrome (CFC), a genetic mutation so rare that just over 100 cases have been reported worldwide. Over the course of this book, the truth that Brown learns from his son is also rare — that the life that appears to destroy you is the one you long to embrace. Whatever is human is disabled. Walker is unable to stop bashing himself, and his father is unable to understand him. The boy is likened to the man in the moon, whose face we see though we know it is not there. The face is revealed by our believing in it. As Brown searches for his son’s mind, he finds his own.

《月亮上的男孩》(The Boy in the Moon)以这种冷峻的方式开头。布朗深知这能将我们拉进他的故事,走到他与他的家人身边;也是因为身为作家,他了解比起矫饰的语言,平铺直叙的事实更能让我们信服。沃克(原意“步行者”,这名字本身就有种悲哀的反讽意味)生来就患有心包膜综合征(简称CFC综合征),这是一种罕见的基因缺陷疾病,全球范围内至今仅报告了逾100例病例。在这本书渐渐展开时,布朗也向我们介绍了一个他从儿子身上学到的难能可贵的真理——那种看似要毁灭你的生活,恰恰正是你渴望拥抱的。人类再了不起,终归都有力有不逮的时候。沃克无法控制住不去捶打自己,而他的父亲也同样无能为力——他没法理解自己的孩子。这个男孩被比作是月亮上的人,我们可以看见他的脸,却深知他并不在此处。我们能看见这张脸,是因为我们对它的信念。布朗一路探寻儿子的思想,也寻找到了自己的心灵。

He proceeds by leading us through a series of questions and quests regarding the science of Walker’s condition, and the boy’s future. Will he change, improve? Can he be taught? Should he be institutionalized? No one would have blamed the Browns if they had placed Walker in an institution from the start. Mother and father put the question to themselves, and their answer is the same: “No, no, not now. Later.” The reason for the delay is love. Walker brings a strange, sweet love to his family, not because he exhibits love himself, but rather because he elicits their capacity for it.

他随之带领我们追问一系列问题,了解有关沃克病情的科学道理,探索沃克的未来。他的情况能改变,能好转吗?他能够接受教导吗?他应该被送到福利院去吗?假如布朗夫妇从一开始就把沃克送进一家福利机构,没人会谴责他们。爸爸和妈妈也总在问自己这个问题,而答案总是一样的:“不行,不行,现在还不行。再等等看吧。”拖延的原因在于爱。沃克带给家人的是一种奇怪而又甜蜜的爱,这并不是因为他自己能表现出爱,而在于他激发了他们爱的能力。

Along the way, the parents despair, quarrel, blame themselves for Walker’s lack of progress, fall into dark silences. There are money worries. Walker’s formula alone costs $12,000 a year. Husband and wife have no privacy. They pay less attention to each other than to Walker. They learn to live with him as a sideshow attraction in public. The perceived normalities of other families insult and assault them. In his investigations Brown discovers that had Walker been conceived today, a test administered at 10 weeks of pregnancy might have been available to detect abnormalities. Johanna says she would have had an abortion. Brown says, “But then you wouldn’t have had Walker.” Johanna counters that a fetus would not have been the Walker they know now. Brown speculates about what the world would be like without imperfect people like Walker. What we take from such exchanges is how lovely the couple are in their candor. One cannot help wondering if, in his formless, undemonstrative way, Walker created them.

一路走来,父母会绝望,会争吵,会将沃克情况没有改善的责任归咎在自己身上,会陷入阴郁的沉默。他们为钱的事情发愁。光是买沃克的配方奶,每年就要花1.2万美元。夫妻俩毫无隐私可言。他们对彼此的关心,及不上对沃克的关心。他们学会了将与他共处的生活当成是在公众面前的一场余兴表演。别人家的正常生活,对他们是种污辱与打击。布朗在调查中发现,假如妻子是在现在怀上沃克,在怀孕10周进行的检测中就有可能及时发现胎儿的异样。乔安娜说,如果说这样她会去做流产手术。布朗说,“真这样想的话,你就不会生下沃克了。”乔安娜反驳说,一个胎儿不可能是他们现在认识的沃克。布朗开始思索,假如这个世界没有了一切像沃克这样不完美的人,将会是怎样的。从这些对话中我们可以看出,这对夫妻直言不讳,是多么可爱。你也会情不自禁地想,是否恰恰是沃克用一种无形而含蓄的方式,造就了他的父母。

Brown’s scientific pursuit is largely fruitless. He meets other parents with CFC children, but they offer only a passing communal solace. Too little is known of Walker’s condition. Brown rejects the idea of his son’s life “reduced to a typing error in a three-billion-long chain of letters.” Life is more complicated than a genome. He learns more from his travels in France, and in Canada, his home country, where he consults those who have given their lives to both aiding and learning from the disabled. People like the researcher Gilles Le Cardinal and Jean Vanier, who has created networks of support groups and communities for the afflicted, teach him much about Walker’s hidden mind. The 82-year-old Vanier, who founded L’Arche (after Noah’s ark), an international organization of communities for the intellectually disabled, believes that the severely disabled challenge us by their existence. They implicitly ask, “Do you consider me human?” They suggest how arduous it is to be human. They remind us of death.

布朗在医学科研方面的探索几乎是无功而返。他见了一些同样生了患CFC综合征的孩子家长,但他们能给他的只是一种同病相怜的短暂安慰。对于沃克罹患的疾病,世人了解得太少。布朗抗拒他儿子的生命“仅仅是30亿字节长的字符串中出现的一个打印错误”这种说法。生命毕竟要比染色体组要复杂。在前往法国和家乡加拿大旅游时,他了解了更多,他咨询了一些人,他们终其一生帮助残障人士,同时又从对方身上学到了很多。这其中就包括研究者吉勒·勒·卡迪纳(Gilles Le Cardinal)和让·瓦涅(Jean Vanier),瓦涅为病残人士创建了一个由一系列支持小组和社区构成的网络,他教给了布朗许多东西,帮助布朗探寻沃克隐秘的内心世界。82岁的瓦涅创办了“方舟社区”(L’Arche,从“诺亚方舟”得名),这是一家专为智力残障人士服务的国际社区组织,他认为那些严重残疾的人用自身的存在对我们提出了挑战。他们隐晦地提出问题:“你认为我还算是人吗?”他们让人们知道,生而为人是多么艰辛的一件事。他们提醒我们,死亡就潜伏在周遭。

Brown’s research appears to give both father and son a raison d’être. As a journalist — a feature writer for The Globe and Mail — Brown knows the satisfaction of learning a foreign subject and writing about it with newfound authority. The difference here is that most of the time journalists treat learning as a buffet at which they taste and move along. The story Brown is working on is the justification of his and Walker’s life. Yet he maintains the reporter’s tone of cool inquiry, even as he delves into matters of the spirit, which gives his learning process the feel of a reasoned capitulation. Brown does not seem born to spiritual thoughts. When he expresses them, they sound all the more persuasive, as one feels the pull of his natural resistance.

布朗的研究似乎同时赋予了父子二人存在的理由。作为记者——他是多伦多《环球邮报》(The Globe and Mail)特写记者——布朗深知学习一门陌生的课题,然后以俨然是专业的口吻在文中娓娓道来,这会带来多大的满足感。不过不同的是,大部分情况下,记者都只是把学习经历当成是一场自助餐,一旦尝出了味道就换些别的吃。布朗写作的这个故事,是要去证明自己和儿子生命的存在是合理的。然而他始终保持记者调查时的冷静语调,哪怕是在开始探究精神灵性层面的时候,与灵性层面的事物相比,他的学习过程虽然合情合理,却带有投降的味道。布朗似乎并不是天生就喜欢灵性思考,阐述这类想法的时候就显得更有说服力,因为你可以感受到他对这类想法的固有抗拒。

Walker is nearly 13 when Brown’s story ends, and he has changed a little. He is drawn to the sound of a human voice, even though he cannot produce one himself. It is said that babies learn language in order to tell the stories already in them. Walker cannot tell the stories inside him, but his inability may be his story, the one told in silence, of frustration and gratitude. If he knows anything, it is that he needs. He may even intuit that he is needed. When inevitably the Browns place Walker in a group assisted-living home, a white bungalow on the edge of town, it allows him what the family never imaged for him — a life of his own.

布朗的这本书作结时,沃克已经快要13岁了,他确实有了一点变化。他对人的声音已经有了反应,不过他自己仍然不能说话。曾有人言,婴儿学语是为了讲述他们心里已有的故事。沃克没法讲述他心里的故事,但他的残障本身或许就是他的故事,一个在沉默中讲述的故事,它关乎挫败,也关乎感恩。如果沃克真的知道什么,那就是他有所需要。说不定,他甚至可以本能感知到,别人也需要他。最终布朗夫妇还是不可避免地送沃克去了一家支持性治疗之家(assisted-living home),那是一片白色的平房,位于市郊,沃克因此能够拥有家人想都不敢为他设想的东西——他自己的生活。

Standing back, Brown contemplates the mystery of his son, which contains other mysteries — for instance, do people like Walker improve evolution by testing our sympathetic capacities, thus moving us toward a survival of the weakest? “What if Walker’s life is a work of art in progress?” he asks. “Would that persuade you to take care of him for me?” The hurling of this gauntlet is what we have been thinking (dreading) all along. The Browns live in “an underworld of Walker’s making.” Of course they do. Yet who does not live in a world of someone else’s making? The trick lies in the attitude one brings to the inevitably compromised life. In a way, the containment that Walker forces upon his family offers an invitation to become creative within strict limits. Richard Wilbur said the strength of the genie comes from its living in a bottle. As relentlessly difficult and sorrowful as is the life that Walker shapes, it also insists on something beautiful in reaction to it. Thus Brown’s book.

布朗退后一步,思索儿子身上的谜题,而这个谜题又套着其他谜团。比方说,像沃克这样的人是否通过考验我们的同情心,令我们走向“弱者生存”的状态,因而促进了进化?“假如沃克的生命是一件仍在完善中的艺术品,将会怎样?”他追问这个问题。“这能说服你替我去看护他吗?”这记拷问正是我们一直以来都在思考(同时惊惧)的问题。布朗夫妇生活在“沃克造就的地下世界中”。他们当然如此。可谁又不是生活在他人造就的世界里呢?关键在于你用什么样的态度来面对注定不完满的人生。在某种程度上,沃克给家人带来的重重阻碍,同时也使得他们在严峻的限制下仍然能保持创造力。理查德·威尔伯(Richard Wilbur)曾说,精灵的魔力缘于他们生活在瓶中。沃克塑造的生活固然困难和悲伤到了无以复加的程度,但它同时也激发出了一种美。这就是布朗之书。

But still. To be sure, Walker has made the Browns greater people. He has alerted them to the value of living in the here and now. He has helped to enlarge their ethical nature. He has made them aware that in most important things — war, love, death — we are as helpless as Walker. Nonetheless, for all that and then some, would we assume the care and feeding of Walker Brown? The father’s challenge is insincere. He would not trade his life for any of ours.

饶是如此。有一点仍可以确定,那就是沃克令布朗夫妇成为更好的人。他提醒他们生活在此地、生活在当下的价值。他升华了他们的伦理观念。他让他们明白,在大多数重大问题上——包括战争、爱情、死亡——我们其实与沃克一样孤立无助。尽管如此,我们能代替他承担照顾和哺育沃克·布朗的职责吗?这位父亲提出的吁请并不是那么真心实意。他绝不会拿自己的生活跟我们任何人的生活交换。

A wonder occurs on Page 50 of this book. The reader has been immersed in the endless pain of living with Walker. Suddenly there is a photograph of him and his father as they loll in a chaise. And Walker looks very much like an ordinary child. There is something slightly off about the eyes, but no more than that. After our imagining a heartbreaking monster, we see instead that Walker is close to us. He is the underdeveloped us, the unreachable us of whom we are always dimly aware. The image shepherds us through the rest of the book even after we are shown other, clearer photos of the boy’s malformations — Ian reading a newspaper, Walker leaning back in his arms, and the two of them at peace.

在这本书的第50页出现了一幅奇景。在此前,读者一直沉浸在与沃克共同生活的那种无边无尽的苦痛中。突然眼前出现了一张父子二人的照片,两人一起仰躺在一张沙发椅上。沃克看起来就像个正常的小孩一样,他的眼神有些游移,可是除此之外再无其他异样。我们一路想象的是一个让人心碎的怪物,现在看到的却是一个跟我们相似的沃克。他就是我们一直隐约中知晓的自己,只不过他没有正常发育,无法正常沟通。在继续阅读这本书时,我们还将看到其他照片,可以更清楚地看到这个孩子的畸形,可是引导我们读完本书的,始终就是这张图片——伊安在读报纸,沃克躺在父亲的怀里,两人看起来是那么平静。
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