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歲大的兒子沃克(Walker)不停捶打自己的腦袋和耳朵，口中喃喃自語。
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，額頭特別大，雙眼傾斜，下唇肥厚。他不會說話，不會吃固體食物，只能通過喂食管從一個用泵抽壓的喂食袋中攝取配方奶。吸管從他睡袋上的洞里穿過，直接注入裝在他腹部的一個閥門。沃克把他自己打醒的時候，他的父親就得把管子摘下來，將這個45磅重的男孩從搖籃里抱出來，抱著他爬下三段樓梯，把孩子重新哄睡。他還要換下沃克已經(jīng)很沉的紙尿褲，因為他一直沒學(xué)會上廁所，同時要避免把孩子的排泄物灑得到處都是。然后他會喂一瓶配方奶給孩子，里面沖了一點Pablum牌麥片。廚房的地面上不小心灑了一層麥片碎屑。這一切布朗都得盡可能悄無聲息地來做，免得吵醒了他的妻子喬安娜(Johanna)和沃克的姐姐海莉(Hayley)。在沃克出生的頭八年里，他的父母從沒連睡過兩晚整覺。
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)以這種冷峻的方式開頭。布朗深知這能將我們拉進(jìn)他的故事，走到他與他的家人身邊;也是因為身為作家，他了解比起矯飾的語言，平鋪直敘的事實更能讓我們信服。沃克(原意“步行者”，這名字本身就有種悲哀的反諷意味)生來就患有心包膜綜合征(簡稱CFC綜合征)，這是一種罕見的基因缺陷疾病，全球范圍內(nèi)至今僅報告了逾100例病例。在這本書漸漸展開時，布朗也向我們介紹了一個他從兒子身上學(xué)到的難能可貴的真理——那種看似要毀滅你的生活，恰恰正是你渴望擁抱的。人類再了不起，終歸都有力有不逮的時候。沃克無法控制住不去捶打自己，而他的父親也同樣無能為力——他沒法理解自己的孩子。這個男孩被比作是月亮上的人，我們可以看見他的臉，卻深知他并不在此處。我們能看見這張臉，是因為我們對它的信念。布朗一路探尋兒子的思想，也尋找到了自己的心靈。
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.
他隨之帶領(lǐng)我們追問一系列問題，了解有關(guān)沃克病情的科學(xué)道理，探索沃克的未來。他的情況能改變，能好轉(zhuǎn)嗎?他能夠接受教導(dǎo)嗎?他應(yīng)該被送到福利院去嗎?假如布朗夫婦從一開始就把沃克送進(jìn)一家福利機構(gòu)，沒人會譴責(zé)他們。爸爸和媽媽也總在問自己這個問題，而答案總是一樣的：“不行，不行，現(xiàn)在還不行。再等等看吧。”拖延的原因在于愛。沃克帶給家人的是一種奇怪而又甜蜜的愛，這并不是因為他自己能表現(xiàn)出愛，而在于他激發(fā)了他們愛的能力。
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.
一路走來，父母會絕望，會爭吵，會將沃克情況沒有改善的責(zé)任歸咎在自己身上，會陷入陰郁的沉默。他們?yōu)殄X的事情發(fā)愁。光是買沃克的配方奶，每年就要花1.2萬美元。夫妻倆毫無隱私可言。他們對彼此的關(guān)心，及不上對沃克的關(guān)心。他們學(xué)會了將與他共處的生活當(dāng)成是在公眾面前的一場余興表演。別人家的正常生活，對他們是種污辱與打擊。布朗在調(diào)查中發(fā)現(xiàn)，假如妻子是在現(xiàn)在懷上沃克，在懷孕10周進(jìn)行的檢測中就有可能及時發(fā)現(xiàn)胎兒的異樣。喬安娜說，如果說這樣她會去做流產(chǎn)手術(shù)。布朗說，“真這樣想的話，你就不會生下沃克了。”喬安娜反駁說，一個胎兒不可能是他們現(xiàn)在認(rèn)識的沃克。布朗開始思索，假如這個世界沒有了一切像沃克這樣不完美的人，將會是怎樣的。從這些對話中我們可以看出，這對夫妻直言不諱，是多么可愛。你也會情不自禁地想，是否恰恰是沃克用一種無形而含蓄的方式，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.
布朗在醫(yī)學(xué)科研方面的探索幾乎是無功而返。他見了一些同樣生了患CFC綜合征的孩子家長，但他們能給他的只是一種同病相憐的短暫安慰。對于沃克罹患的疾病，世人了解得太少。布朗抗拒他兒子的生命“僅僅是30億字節(jié)長的字符串中出現(xiàn)的一個打印錯誤”這種說法。生命畢竟要比染色體組要復(fù)雜。在前往法國和家鄉(xiāng)加拿大旅游時，他了解了更多，他咨詢了一些人，他們終其一生幫助殘障人士，同時又從對方身上學(xué)到了很多。這其中就包括研究者吉勒·勒·卡迪納(Gilles Le Cardinal)和讓·瓦涅(Jean Vanier)，瓦涅為病殘人士創(chuàng)建了一個由一系列支持小組和社區(qū)構(gòu)成的網(wǎng)絡(luò)，他教給了布朗許多東西，幫助布朗探尋沃克隱秘的內(nèi)心世界。82歲的瓦涅創(chuàng)辦了“方舟社區(qū)”(L’Arche，從“諾亞方舟”得名)，這是一家專為智力殘障人士服務(wù)的國際社區(qū)組織，他認(rèn)為那些嚴(yán)重殘疾的人用自身的存在對我們提出了挑戰(zhàn)。他們隱晦地提出問題：“你認(rèn)為我還算是人嗎?”他們讓人們知道，生而為人是多么艱辛的一件事。他們提醒我們，死亡就潛伏在周遭。
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.
布朗的研究似乎同時賦予了父子二人存在的理由。作為記者——他是多倫多《環(huán)球郵報》(The Globe and Mail)特寫記者——布朗深知學(xué)習(xí)一門陌生的課題，然后以儼然是專業(yè)的口吻在文中娓娓道來，這會帶來多大的滿足感。不過不同的是，大部分情況下，記者都只是把學(xué)習(xí)經(jīng)歷當(dāng)成是一場自助餐，一旦嘗出了味道就換些別的吃。布朗寫作的這個故事，是要去證明自己和兒子生命的存在是合理的。然而他始終保持記者調(diào)查時的冷靜語調(diào)，哪怕是在開始探究精神靈性層面的時候，與靈性層面的事物相比，他的學(xué)習(xí)過程雖然合情合理，卻帶有投降的味道。布朗似乎并不是天生就喜歡靈性思考，闡述這類想法的時候就顯得更有說服力，因為你可以感受到他對這類想法的固有抗拒。
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.
布朗的這本書作結(jié)時，沃克已經(jīng)快要13歲了，他確實有了一點變化。他對人的聲音已經(jīng)有了反應(yīng)，不過他自己仍然不能說話。曾有人言，嬰兒學(xué)語是為了講述他們心里已有的故事。沃克沒法講述他心里的故事，但他的殘障本身或許就是他的故事，一個在沉默中講述的故事，它關(guān)乎挫敗，也關(guān)乎感恩。如果沃克真的知道什么，那就是他有所需要。說不定，他甚至可以本能感知到，別人也需要他。最終布朗夫婦還是不可避免地送沃克去了一家支持性治療之家(assisted- living home)，那是一片白色的平房，位于市郊，沃克因此能夠擁有家人想都不敢為他設(shè)想的東西——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，思索兒子身上的謎題，而這個謎題又套著其他謎團。比方說，像沃克這樣的人是否通過考驗我們的同情心，令我們走向“弱者生存”的狀態(tài)，因而促進(jìn)了進(jìn)化?“假如沃克的生命是一件仍在完善中的藝術(shù)品，將會怎樣?”他追問這個問題。“這能說服你替我去看護(hù)他嗎?”這記拷問正是我們一直以來都在思考(同時驚懼)的問題。布朗夫婦生活在“沃克造就的地下世界中”。他們當(dāng)然如此?？烧l又不是生活在他人造就的世界里呢?關(guān)鍵在于你用什么樣的態(tài)度來面對注定不完滿的人生。在某種程度上，沃克給家人帶來的重重阻礙，同時也使得他們在嚴(yán)峻的限制下仍然能保持創(chuàng)造力。理查德·威爾伯(Richard Wilbur)曾說，精靈的魔力緣于他們生活在瓶中。沃克塑造的生活固然困難和悲傷到了無以復(fù)加的程度，但它同時也激發(fā)出了一種美。這就是布朗之書。
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.
饒是如此。有一點仍可以確定，那就是沃克令布朗夫婦成為更好的人。他提醒他們生活在此地、生活在當(dāng)下的價值。他升華了他們的倫理觀念。他讓他們明白，在大多數(shù)重大問題上——包括戰(zhàn)爭、愛情、死亡——我們其實與沃克一樣孤立無助。盡管如此，我們能代替他承擔(dān)照顧和哺育沃克·布朗的職責(zé)嗎?這位父親提出的吁請并不是那么真心實意。他絕不會拿自己的生活跟我們?nèi)魏稳说纳罱粨Q。
