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