《渺小一生》:他开始变疲倦是十月的时候。
But now he knows for certain how true the axiom is, because he himself—his very life—has proven it. The person I was will always be the person I am, he realizes. The context may have changed: he may be in this apartment, and he may have a job that he enjoys and that pays him well, and he may have parents and friends he loves. He may be respected; in court, he may even be feared. But fundamentally, he is the same person, a person who inspires disgust, a person meant to be hated. And in that microsecond that he finds himself suspended in the air, between the ecstasy of being aloft and the anticipation of his landing, which he knows will be terrible, he knows that x will always equal x, no matter what he does, or how many years he moves away from the monastery, from Brother Luke, no matter how much he earns or how hard he tries to forget. It is the last thing he thinks as his shoulder cracks down upon the concrete, and the world, for an instant, jerks blessedly away from beneath him: x = x, he thinks. x = x, x = x.
但现在他确知这个公理有多么真实，因为他自己——他的人生——就证明了这个公理。他意识到，以往的我将永远是现在的我。脉络背景或许改变了：他可能住在这间公寓里，可能有一份他很喜欢的工作、赚很多钱，可能有了他深爱的父母和朋友。他可能备受尊敬，在法庭里，他甚至令人畏惧。但基本上，他还是那个同样的人，会让人倒胃口，本来就该让人讨厌。而在他发现自己悬在空气中的那几分之一秒里，在飞上天的狂喜以及预料得到的可怕落地之间，他知道x将永远等于x——不论他做了什么，也不管他离开修道院和卢克修士多少年，无论他赚多少钱，或者有多努力想要忘记。当他一边的肩膀撞上水泥，整个世界在一瞬间猛地从他下方抽身时，他想到的最后一件事，就是这个公理：x＝x，他想着，x＝x，x＝x。
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WHEN JACOB WAS very small, maybe six months old or so, Liesl came down with pneumonia. Like most healthy people, she was a terrible sick person: grouchy and petulant and, mostly, stunned by the unfamiliar place in which she now found herself. “I don’t get sick,” she kept saying, as if some mistake had been made, as if what had been given her had been meant for someone else.
雅各布还很小的时候，六个月左右吧，莉柔得了肺炎。就像大部分健康的人，她一生病就变得非常差劲：爱抱怨又任性，最严重的是，她被不熟悉的状况吓到了。“我从不生病的。”她一直这样说，好像有人搞错了什么，好像她碰到的事情应该发生在别人身上才对。
Because Jacob was a sickly baby—not in any dramatic way, but he had already had two colds in his short life, and even before I knew what his smile looked like, I knew what his cough sounded like: a surprisingly mature hack—we decided that it would be better if Liesl spent the next few days at Sally’s to rest and get better, and I stayed at home with Jacob.
雅各布是个多病的婴儿，不是特别严重，但他出生到那时已经感冒过两次，我还没见过他微笑，就先听到他的咳嗽声：一种出奇成熟的干咳。因此，我们决定，接下来几天莉柔最好去萨莉家休息养病，我则留在家里照顾雅各布。
I thought myself basically competent with my son, but over the course of the weekend, I must have called my father twenty times to ask him about the various little mysteries that kept presenting themselves, or to confirm with him what I knew I knew but which, in my fluster, I had forgotten: He was making strange noises that sounded like hiccups but were too irregular to actually be hiccups—what were they? His stool was a little runny—was that a sign of anything? He liked to sleep on his stomach, but Liesl said that he should be on his back, and yet I had always heard that he’d be perfectly fine on his stomach—would he be? Of course, I could’ve looked all of this up, but I wanted definitive answers, and I wanted to hear them from my father, who had not just the right answers but the right way of delivering them. It comforted me to hear his voice. “Don’t worry,” he said at the end of every call. “You’re doing just fine. You know how to do this.” He made me believe I did.
我本来自以为可以对付我儿子，但那个周末，我打电话给我爸一定超过二十次，问他不断发生的各式疑难杂症，或者确认一些我明明知道、但慌乱中忘掉的事情：他发出像打嗝的怪声，但实在太不规律，不可能真是打嗝，那会是什么？他的大便有点太稀，这是什么征兆？他喜欢趴着睡觉，莉柔说他应该仰着睡，可是我总听说他趴着睡也完全没问题啊，这样可以吗？当然，我可以自己查阅这些问题，但我希望有肯定的答案，而且我希望听到由我父亲说出来，他不只知道正确的答案，也会用正确的方式说。听到他的声音就让我放心。“别担心。”每次挂电话前他都这么说，“你做得很好。你知道怎么做。”他让我相信真的是如此。
After Jacob got sick, I called my father less: I couldn’t bear to talk to him. The questions I now had for him—how would I get through this?; what would I do, afterward?; how could I watch my child die?—were ones I couldn’t even bring myself to ask, and ones I knew would make him cry to try to answer.
雅各布生病之后，我就比较少打电话给我父亲了，我没有勇气听他讲话。此时我想问他：我要怎么熬过这些？之后我要怎么办？我怎么能看着我的小孩死去？全是我无法鼓起勇气问的问题，而且我知道这些只会害他试着回答时哭出来而已。
He had just turned four when we noticed that something was wrong. Every morning, Liesl would take him to nursery school, and every afternoon, after my last class, I would pick him up. He had a serious face, and so people thought that he was a more somber kid than he really was: at home, though, he ran around, up and down the staircase, and I ran after him, and when I was lying on the couch reading, he would come flopping down on top of me. Liesl too became playful around him, and sometimes the two of them would run through the house, shrieking and squealing, and it was my favorite noise, my favorite kind of clatter.
我们发现雅各布不对劲时，他才刚满4岁。每天早上，莉柔会带他去托儿所，每天下午我上完课之后，就会去接他。他有一张严肃的脸，所以大家总是误以为他闷闷不乐，但其实并非如此：在家里，他会到处奔跑，在楼梯爬上爬下，我就跟在他后头跑。我躺在沙发上阅读时，他会跑来扑在我身上。莉柔跟他在一起时也变得很爱玩，有时他们两个会在屋里跑来跑去，尖声叫嚷着，那是我最喜欢的声音、我最喜欢的混乱。
It was October when he began getting tired. I picked him up one day, and all of the other children, all of his friends, were in a jumble, talking and jumping, and then I looked for my son and saw him in a far corner of the room, curled on his mat, sleeping. One of the teachers was sitting near him, and when she saw me, she waved me over. “I think he might be coming down with something,” she said. “He’s been a little listless for the past day or so, and he was so tired after lunch that we just let him sleep.” We loved this school: other schools made the kids try to read, or have lessons, but this school, which was favored by the university’s professors, was what I thought school should be for a four-year-old—all they seemed to do was listen to people reading them books, and make various crafts, and go on field trips to the zoo.
他开始变疲倦是十月的时候。有天我去接他，其他小孩、他所有的朋友全挤在一起，忙着讲话或蹦蹦跳跳。我寻找他，发现他躺在教室另一头的角落里，蜷缩在他的垫子上，正在睡觉。一个老师坐在他旁边，看到我后，就挥手要我过去。“我想他可能是得了什么病。”她说，“他这两天一直没什么精神。今天吃过中饭就累得不得了，我们只好让他睡觉。”我们很喜欢这家托儿所，其他托儿所会逼小孩阅读或上课，但不仅大学里的教授偏爱这家托儿所，我也认为这里适合4岁小孩：他们只要听大人读故事书、做各种手工，或是去动物园远足。
I had to carry him out to the car, but when we got home, he woke and was fine, and ate the snack I made him, and listened to me read to him before we built the day’s centerpiece together. For his birthday, Sally had gotten him a set of beautiful wooden blocks that were carved into geode-like shapes and could be stacked very high and into all sorts of interesting forms; every day we built a new construction in the center of the table, and when Liesl got home, Jacob would explain to her what we’d been building—a dinosaur, a spaceman’s tower—and Liesl would take a picture of it.
我抱着他上车。到家时，他醒了，看起来很好。他吃了我做给他的点心，然后听我读故事书，我们再一起做餐桌中央的装饰品。之前4岁生日时，萨莉送了一套漂亮的木质积木，切割成了类似晶洞的各种形状，积木可以堆得非常高，组成各种有趣的形状；我们每天都会用积木组合出新东西，放在餐桌中央当装饰，等到莉柔回家，雅各布就会跟她解释我们今天组合的是什么（一只恐龙、航天员的高塔），莉柔会拍照记录。
That night I told Liesl what Jacob’s teacher had said, and the next day, Liesl took him to the doctor, who said he seemed perfectly normal, that nothing seemed out of the ordinary. Still, we watched him over the next few days: Was he more energetic or less? Was he sleeping longer than usual, eating less than usual? We didn’t know. But we were frightened: there is nothing more terrifying than a listless child. The very word seems, now, a euphemism for a terrible fate.
那天晚上，我把雅各布老师说的话转述给莉柔听。第二天，莉柔就带他去看医生，医生说看起来完全正常，没什么不对劲。不过我们接下来几天还是密切观察他：他的精力变得较好还是较差？他是不是睡得比平常久？吃得比平常少？我们不知道，但是我们很害怕：再也没有什么比无精打采的孩子更令人害怕的了。这个句子现在看来，似乎是一段可怕命运的委婉说法。
And then, suddenly, things began to accelerate. We went to my parents’ over Thanksgiving and were having dinner when Jacob began seizing. One moment he was present, and the next he was rigid, his body becoming a plank, sliding off the chair and beneath the table, his eyeballs rolling upward, his throat making a strange, hollow clicking noise. It lasted only ten seconds or so, but it was awful, so awful I can still hear that horrible clicking noise, still see the horrible stillness of his head, his legs marching back and forth in the air.
谁知突然间，情况开始急转直下。我们去我父母家过感恩节，吃晚餐时，雅各布发作了。这一刻他还好好的，下一刻他就全身僵直，身体像一块木板似的滑下椅子，溜到餐桌底下，他的眼球翻白，喉咙发出一种奇怪、空洞的咔嗒声。这个状况只持续了十秒左右，但是太可怕了，可怕到我现在还能听到那可怕的咔嗒声，还能看到他头部那恐怖的僵硬，双腿在空中蹬着。
My father ran and called a friend of his at New York Presbyterian and we rushed there, and Jacob was admitted, and the four of us stayed in his room overnight—my father and Adele lying on their coats on the floor, Liesl and I sitting on either side of the bed, unable to look at each other.
我父亲赶紧打电话给纽约长老会医院的一个朋友。我们赶去那里，雅各布住进医院，我们四个人都留在病房过夜——我父亲和阿黛尔穿着大衣躺在地上，莉柔和我坐在病床两侧，彼此都没有勇气看对方。
Once he had stabilized, we went home, where Liesl had called Jacob’s pediatrician, another med-school classmate of hers, to make appointments with the best neurologist, the best geneticist, the best immunologist—we didn’t know what it was, but whatever it was, she wanted to make sure Jacob had the best. And then began the months of going from one doctor to the next, of having Jacob’s blood drawn and brain scanned and reflexes tested and eyes peered into and hearing examined. The whole process was so invasive, so frustrating—I had never known there were so many ways to say “I don’t know” until I met these doctors—and at times I would think of how difficult, how impossible it must be for parents who didn’t have the connections we did, who didn’t have Liesl’s scientific literacy and knowledge. But that literacy didn’t make it easier to see Jacob cry when he was pricked with needles, so many times that one vein, the one in his left arm, began to collapse, and all those connections didn’t prevent him from getting sicker and sicker, from seizing more and more, and he would shake and froth, and emit a growl, something primal and frightening and far too low-pitched for a four-year-old, as his head knocked from side to side and his hands gnarled themselves.
等他状况一稳定下来，我们就带他回家。莉柔打电话给雅各布的小儿科医生，是她医学院的同学，帮她约了最好的神经科医生、最好的遗传学家、最好的免疫学家。我们不知道他得的是什么病，但无论是什么，莉柔都要确保雅各布得到最好的治疗。接下来几个月，就是看一个又一个医生。抽血，做脑部扫描，做反射测试，检查眼睛和听力。整个过程太具有侵入性、太令人沮丧了（在认识这些医生前，我从不知道可以用那么多方式说“我不知道”）。有时我会想，对于那些不像我们有这么多关系、不像莉柔那么懂医学的父母来说，这样的情况会有多么艰难、多么无法面对。但即使有莉柔专业的医学知识，看着雅各布因为针尖刺入皮肤而大哭时，我们也不会好受到哪里去。他的血管被扎了太多次，左手臂的一根血管开始萎陷。而且就算有那么多的关系，也无法防止他病得越来越重，发作得越来越频繁。他会颤抖、口吐白沫，发出一种原始而可怕的嚎叫，低沉得根本不像一个4岁大的小孩会发出的声音，同时他的头还会左右摇晃，双手扭曲。
By the time we had our diagnosis—an extremely rare neurodegenerative disease called Nishihara syndrome, one so rare that it wasn’t even included on batteries of genetic tests—he was almost blind. That was February. By June, when he turned five, he rarely spoke. By August, we didn’t think he could hear any longer.
他得的是一种非常罕见的神经退化疾病，叫西原综合征，罕见到一连串的基因测试都无法诊断。等到终于确诊时，他几乎全盲了。那是二月。到了六月他满5岁时，就几乎不能再讲话了。到了八月，我们已不认为他还有听力。
He seized more and more. We tried one drug after the next; we tried them in combinations. Liesl had a friend who was a neurologist who told us about a new drug that hadn’t been approved in the States yet but was available in Canada; that Friday, Liesl and Sally drove up to Montreal and back, all in twelve hours. For a while the drug worked, although it gave him a terrible rash, and whenever we touched his skin he would open his mouth and scream, although no sound came out, and tears would run out of his eyes. “I’m sorry, buddy,” I would plead with him, even though I knew he couldn’t hear me, “I’m sorry, I’m sorry.”
他发作得越来越频繁，我们试过一种又一种药物，也试过各种组合。莉柔有个神经学医生朋友跟我们说有一种新药，在美国还没通过核准，但是加拿大买得到。那个星期五，莉柔就和萨莉开车北上到蒙特利尔又回来，总共花了十二个小时。有一阵子，那种药有用，不过害他起了严重的皮疹，只要碰到他的皮肤，他就会张嘴尖叫，可是他发不出声音，眼泪流个不停。“对不起，小朋友。”我会恳求他，即使我知道他听不见，“对不起，对不起。”
I could barely concentrate at work. I was only teaching part-time that year; it was my second year at the university, my third semester. I would walk through campus and overhear conversations—someone talking about splitting up with her boyfriend, someone talking about a bad grade he got on a test, someone talking about his sprained ankle—and would feel rage. You stupid, petty, selfish, self-absorbed people, I wanted to say. You hateful people, I hate you. Your problems aren’t problems. My son is dying. At times my loathing was so profound I would get sick. Laurence was teaching at the university then as well, and he would pick up my classes when I had to take Jacob to the hospital. We had a home health-care worker, but we took him to every appointment so we could keep track of how fast he was leaving us. In September, his doctor looked at us after he had examined him. “Not long now,” he said, and he was very gentle, and that was the worst part.
我几乎没办法专心工作，那一年我只能兼课。那是我在大学教书的第二年、第三个学期。我走在校园里，无意间听到某些谈话，就会很愤怒——有人说她和男朋友分手了，有人说他考试成绩很差，有人说他扭到脚踝了。我想说，你们这些愚蠢、琐碎、自私、只关心自己的人。你们这些可恨的人，我恨你们。你们的问题根本就不是问题。我儿子快死了。有时我的憎恶强烈到连自己都不舒服。当时劳伦斯也在那所大学教书，我必须送雅各布去医院时，他会帮我代课。我们请了看护来家里照顾他，但每次到医院看病我们都会亲自带他去，这样才能持续追踪他还剩多少时间。到了九月，他的医生检查过后看着我们：“不会太久了。”他语气非常温柔，而那是最糟糕的部分。
Laurence came over every Wednesday and Saturday night; Gillian came every Tuesday and Thursday; Sally came every Monday and Sunday; another friend of Liesl’s, Nathan, came every Friday. When they were there, they would cook or clean, and Liesl and I would sit with Jacob and talk to him. He had stopped growing sometime in the last year, and his arms and legs had gone soft from lack of use: they were floppy, boneless even, and you had to make sure that when you held him, you held his limbs close to you, or they would simply dangle off of him and he would look dead. He had stopped opening his eyes at all in early September, although sometimes they would leak fluids: tears, or a clumpy, yellowish mucus. Only his face remained plump, and that was because he was on such massive doses of steroids. One drug or another had left him with an eczematic rash on his cheeks, candied-red and sandpapery, that was always hot and rough to the touch.
劳伦斯每个周三和周六晚上会过来；吉莉安是每周二和周四；萨莉是周一和周日；莉柔的另一个朋友纳森则是每周五。他们在这里时，会帮我们煮饭或打扫，莉柔和我则陪着雅各布，跟他说话。过去一年间，他已经停止长大了，手臂和腿因为缺乏活动而变得软趴趴的，简直像没有骨头一样。我们抱着他的时候，必须确定也抱紧他的手脚，否则他的四肢就会晃出去，整个人看起来像死了一样。他在九月初就再也张不开眼睛了，不过眼里有时会渗出液体：眼泪，或是一团团发黄的黏液。只有他的脸还鼓鼓的，因为他吃的药含有高剂量的类固醇，其中一种让他的脸颊长出了湿疹，像糖果红的砂纸，摸起来永远又热又粗。
My father and Adele moved in with us in mid-September, and I couldn’t look at him. I knew he knew what it was like to see children dying; I knew how much it hurt him that it was my child. I felt as if I had failed: I felt that I was being punished for not wanting Jacob more passionately when he had been given to us. I felt that if I had been less ambivalent about having children, this never would have happened; I felt that I was being reminded of how foolish and stupid I’d been to not recognize what a gift I’d been given, a gift that so many people yearned for and yet I had been willing to send back. I was ashamed—I would never be the father my father was, and I hated that he was here witnessing my failings.
我父亲和阿黛尔在九月中搬进我们家，我不敢看他。我知道他知道看着自己的孩子死去是什么滋味，我知道他有多伤心那是我的孩子。我觉得自己好像失败了，觉得自己因为当初没有更想要这个孩子而受到了惩罚。我觉得如果当初我对生小孩的态度不是那么犹豫，这样的事情就绝对不会发生。我觉得这是在提醒我，当初我得到这个天赐大礼，那么多人渴望我却不想要，有多愚蠢而荒谬。我觉得很羞愧——我永远无法成为我爸爸那样的父亲，而且我痛恨让他看到我的失败。
Before Jacob had been born, I had asked my father one night if he had any words of wisdom for me. I had been joking, but he took it seriously, as he took all questions I asked him. “Hmm,” he said. “Well, the hardest thing about being a parent is recalibration. The better you are at it, the better you will be.”
雅各布出生前，有一晚我问父亲有没有什么睿智的话可以告诉我。我当时在开玩笑，但他当真了，我所有的问题他都会当真。“唔，”他说，“当父母最困难的一件事就是重新调整。你这方面做得越好，就越能成为好父母。”
At the time, I had pretty much ignored this advice, but as Jacob got sicker and sicker, I thought of it more and more frequently, and realized how correct he was. We all say we want our kids to be happy, only happy, and healthy, but we don’t want that. We want them to be like we are, or better than we are. We as humans are very unimaginative in that sense. We aren’t equipped for the possibility that they might be worse. But I guess that would be asking too much. It must be an evolutionary stopgap—if we were all so specifically, vividly aware of what might go horribly wrong, we would none of us have children at all.
当时我几乎把这句忠告当成耳边风，但是雅各布后来病得越重，我就越常想到这句话。我们都说希望子女快乐，只要快乐、健康就好，但我们其实不是这样想。我们都希望他们跟我们一样，或是比我们强。我们人类在这方面非常缺乏想象力，无法想象子女有可能比我们差。但我猜想那样的要求太多了。那一定是某种进化上的权宜措施——如果我们都这么明确、清楚地意识到哪些地方可能错得离谱，我们就不会生小孩了。
