《渺小一生》:他開始變疲倦是十月的時(shí)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.

但現(xiàn)在他確知這個(gè)公理有多么真實(shí)，因?yàn)樗约骸娜松妥C明了這個(gè)公理。他意識(shí)到，以往的我將永遠(yuǎn)是現(xiàn)在的我。脈絡(luò)背景或許改變了：他可能住在這間公寓里，可能有一份他很喜歡的工作、賺很多錢，可能有了他深愛的父母和朋友。他可能備受尊敬，在法庭里，他甚至令人畏懼。但基本上，他還是那個(gè)同樣的人，會(huì)讓人倒胃口，本來就該讓人討厭。而在他發(fā)現(xiàn)自己懸在空氣中的那幾分之一秒里，在飛上天的狂喜以及預(yù)料得到的可怕落地之間，他知道x將永遠(yuǎn)等于x——不論他做了什么，也不管他離開修道院和盧克修士多少年，無論他賺多少錢，或者有多努力想要忘記。當(dāng)他一邊的肩膀撞上水泥，整個(gè)世界在一瞬間猛地從他下方抽身時(shí)，他想到的最后一件事，就是這個(gè)公理：x＝x，他想著，x＝x，x＝x。

　 2

2

　 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.

雅各布還很小的時(shí)候，六個(gè)月左右吧，莉柔得了肺炎。就像大部分健康的人，她一生病就變得非常差勁：愛抱怨又任性，最嚴(yán)重的是，她被不熟悉的狀況嚇到了?！拔覐牟簧〉摹！彼恢边@樣說，好像有人搞錯(cuò)了什么，好像她碰到的事情應(yīng)該發(fā)生在別人身上才對(duì)。

　 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.

雅各布是個(gè)多病的嬰兒，不是特別嚴(yán)重，但他出生到那時(shí)已經(jīng)感冒過兩次，我還沒見過他微笑，就先聽到他的咳嗽聲：一種出奇成熟的干咳。因此，我們決定，接下來幾天莉柔最好去薩莉家休息養(yǎng)病，我則留在家里照顧雅各布。

　 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.

我本來自以為可以對(duì)付我兒子，但那個(gè)周末，我打電話給我爸一定超過二十次，問他不斷發(fā)生的各式疑難雜癥，或者確認(rèn)一些我明明知道、但慌亂中忘掉的事情：他發(fā)出像打嗝的怪聲，但實(shí)在太不規(guī)律，不可能真是打嗝，那會(huì)是什么？他的大便有點(diǎn)太稀，這是什么征兆？他喜歡趴著睡覺，莉柔說他應(yīng)該仰著睡，可是我總聽說他趴著睡也完全沒問題啊，這樣可以嗎？當(dāng)然，我可以自己查閱這些問題，但我希望有肯定的答案，而且我希望聽到由我父親說出來，他不只知道正確的答案，也會(huì)用正確的方式說。聽到他的聲音就讓我放心。“別擔(dān)心?！泵看螔祀娫捛八歼@么說，“你做得很好。你知道怎么做?！彼屛蚁嘈耪娴氖侨绱?。

　 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，我就比較少打電話給我父親了，我沒有勇氣聽他講話。此時(shí)我想問他：我要怎么熬過這些？之后我要怎么辦？我怎么能看著我的小孩死去？全是我無法鼓起勇氣問的問題，而且我知道這些只會(huì)害他試著回答時(shí)哭出來而已。

　 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.

我們發(fā)現(xiàn)雅各布不對(duì)勁時(shí)，他才剛滿4歲。每天早上，莉柔會(huì)帶他去托兒所，每天下午我上完課之后，就會(huì)去接他。他有一張嚴(yán)肅的臉，所以大家總是誤以為他悶悶不樂，但其實(shí)并非如此：在家里，他會(huì)到處奔跑，在樓梯爬上爬下，我就跟在他后頭跑。我躺在沙發(fā)上閱讀時(shí)，他會(huì)跑來撲在我身上。莉柔跟他在一起時(shí)也變得很愛玩，有時(shí)他們兩個(gè)會(huì)在屋里跑來跑去，尖聲叫嚷著，那是我最喜歡的聲音、我最喜歡的混亂。

　 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.

他開始變疲倦是十月的時(shí)候。有天我去接他，其他小孩、他所有的朋友全擠在一起，忙著講話或蹦蹦跳跳。我尋找他，發(fā)現(xiàn)他躺在教室另一頭的角落里，蜷縮在他的墊子上，正在睡覺。一個(gè)老師坐在他旁邊，看到我后，就揮手要我過去?！拔蚁胨赡苁堑昧耸裁床　！彼f，“他這兩天一直沒什么精神。今天吃過中飯就累得不得了，我們只好讓他睡覺。”我們很喜歡這家托兒所，其他托兒所會(huì)逼小孩閱讀或上課，但不僅大學(xué)里的教授偏愛這家托兒所，我也認(rèn)為這里適合4歲小孩：他們只要聽大人讀故事書、做各種手工，或是去動(dòng)物園遠(yuǎn)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.

我抱著他上車。到家時(shí)，他醒了，看起來很好。他吃了我做給他的點(diǎn)心，然后聽我讀故事書，我們?cè)僖黄鹱霾妥乐醒氲难b飾品。之前4歲生日時(shí)，薩莉送了一套漂亮的木質(zhì)積木，切割成了類似晶洞的各種形狀，積木可以堆得非常高，組成各種有趣的形狀；我們每天都會(huì)用積木組合出新東西，放在餐桌中央當(dāng)裝飾，等到莉柔回家，雅各布就會(huì)跟她解釋我們今天組合的是什么（一只恐龍、航天員的高塔），莉柔會(huì)拍照記錄。

　 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，我把雅各布老師說的話轉(zhuǎn)述給莉柔聽。第二天，莉柔就帶他去看醫(yī)生，醫(yī)生說看起來完全正常，沒什么不對(duì)勁。不過我們接下來幾天還是密切觀察他：他的精力變得較好還是較差？他是不是睡得比平常久？吃得比平常少？我們不知道，但是我們很害怕：再也沒有什么比無精打采的孩子更令人害怕的了。這個(gè)句子現(xiàn)在看來，似乎是一段可怕命運(yùn)的委婉說法。

　 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.

誰知突然間，情況開始急轉(zhuǎn)直下。我們?nèi)ノ腋改讣疫^感恩節(jié)，吃晚餐時(shí)，雅各布發(fā)作了。這一刻他還好好的，下一刻他就全身僵直，身體像一塊木板似的滑下椅子，溜到餐桌底下，他的眼球翻白，喉嚨發(fā)出一種奇怪、空洞的咔嗒聲。這個(gè)狀況只持續(xù)了十秒左右，但是太可怕了，可怕到我現(xiàn)在還能聽到那可怕的咔嗒聲，還能看到他頭部那恐怖的僵硬，雙腿在空中蹬著。

　 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.

我父親趕緊打電話給紐約長(zhǎng)老會(huì)醫(yī)院的一個(gè)朋友。我們趕去那里，雅各布住進(jìn)醫(yī)院，我們四個(gè)人都留在病房過夜——我父親和阿黛爾穿著大衣躺在地上，莉柔和我坐在病床兩側(cè)，彼此都沒有勇氣看對(duì)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.

等他狀況一穩(wěn)定下來，我們就帶他回家。莉柔打電話給雅各布的小兒科醫(yī)生，是她醫(yī)學(xué)院的同學(xué)，幫她約了最好的神經(jīng)科醫(yī)生、最好的遺傳學(xué)家、最好的免疫學(xué)家。我們不知道他得的是什么病，但無論是什么，莉柔都要確保雅各布得到最好的治療。接下來幾個(gè)月，就是看一個(gè)又一個(gè)醫(yī)生。抽血，做腦部掃描，做反射測(cè)試，檢查眼睛和聽力。整個(gè)過程太具有侵入性、太令人沮喪了（在認(rèn)識(shí)這些醫(yī)生前，我從不知道可以用那么多方式說“我不知道”）。有時(shí)我會(huì)想，對(duì)于那些不像我們有這么多關(guān)系、不像莉柔那么懂醫(yī)學(xué)的父母來說，這樣的情況會(huì)有多么艱難、多么無法面對(duì)。但即使有莉柔專業(yè)的醫(yī)學(xué)知識(shí)，看著雅各布因?yàn)獒樇獯倘肫つw而大哭時(shí)，我們也不會(huì)好受到哪里去。他的血管被扎了太多次，左手臂的一根血管開始萎陷。而且就算有那么多的關(guān)系，也無法防止他病得越來越重，發(fā)作得越來越頻繁。他會(huì)顫抖、口吐白沫，發(fā)出一種原始而可怕的嚎叫，低沉得根本不像一個(gè)4歲大的小孩會(huì)發(fā)出的聲音，同時(shí)他的頭還會(huì)左右搖晃，雙手扭曲。

　 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.

他得的是一種非常罕見的神經(jīng)退化疾病，叫西原綜合征，罕見到一連串的基因測(cè)試都無法診斷。等到終于確診時(shí)，他幾乎全盲了。那是二月。到了六月他滿5歲時(shí)，就幾乎不能再講話了。到了八月，我們已不認(rèn)為他還有聽力。

　 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.”

他發(fā)作得越來越頻繁，我們?cè)囘^一種又一種藥物，也試過各種組合。莉柔有個(gè)神經(jīng)學(xué)醫(yī)生朋友跟我們說有一種新藥，在美國(guó)還沒通過核準(zhǔn)，但是加拿大買得到。那個(gè)星期五，莉柔就和薩莉開車北上到蒙特利爾又回來，總共花了十二個(gè)小時(shí)。有一陣子，那種藥有用，不過害他起了嚴(yán)重的皮疹，只要碰到他的皮膚，他就會(huì)張嘴尖叫，可是他發(fā)不出聲音，眼淚流個(gè)不停?！皩?duì)不起，小朋友?！蔽視?huì)懇求他，即使我知道他聽不見，“對(duì)不起，對(duì)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?guī)缀鯖]辦法專心工作，那一年我只能兼課。那是我在大學(xué)教書的第二年、第三個(gè)學(xué)期。我走在校園里，無意間聽到某些談話，就會(huì)很憤怒——有人說她和男朋友分手了，有人說他考試成績(jī)很差，有人說他扭到腳踝了。我想說，你們這些愚蠢、瑣碎、自私、只關(guān)心自己的人。你們這些可恨的人，我恨你們。你們的問題根本就不是問題。我兒子快死了。有時(shí)我的憎惡強(qiáng)烈到連自己都不舒服。當(dāng)時(shí)勞倫斯也在那所大學(xué)教書，我必須送雅各布去醫(yī)院時(shí)，他會(huì)幫我代課。我們請(qǐng)了看護(hù)來家里照顧他，但每次到醫(yī)院看病我們都會(huì)親自帶他去，這樣才能持續(xù)追蹤他還剩多少時(shí)間。到了九月，他的醫(yī)生檢查過后看著我們：“不會(huì)太久了。”他語氣非常溫柔，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.

勞倫斯每個(gè)周三和周六晚上會(huì)過來；吉莉安是每周二和周四；薩莉是周一和周日；莉柔的另一個(gè)朋友納森則是每周五。他們?cè)谶@里時(shí)，會(huì)幫我們煮飯或打掃，莉柔和我則陪著雅各布，跟他說話。過去一年間，他已經(jīng)停止長(zhǎng)大了，手臂和腿因?yàn)槿狈顒?dòng)而變得軟趴趴的，簡(jiǎn)直像沒有骨頭一樣。我們抱著他的時(shí)候，必須確定也抱緊他的手腳，否則他的四肢就會(huì)晃出去，整個(gè)人看起來像死了一樣。他在九月初就再也張不開眼睛了，不過眼里有時(shí)會(huì)滲出液體：眼淚，或是一團(tuán)團(tuán)發(fā)黃的黏液。只有他的臉還鼓鼓的，因?yàn)樗缘乃幒懈邉┝康念惞檀?，其中一種讓他的臉頰長(zhǎng)出了濕疹，像糖果紅的砂紙，摸起來永遠(yuǎn)又熱又粗。

　 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.

我父親和阿黛爾在九月中搬進(jìn)我們家，我不敢看他。我知道他知道看著自己的孩子死去是什么滋味，我知道他有多傷心那是我的孩子。我覺得自己好像失敗了，覺得自己因?yàn)楫?dāng)初沒有更想要這個(gè)孩子而受到了懲罰。我覺得如果當(dāng)初我對(duì)生小孩的態(tài)度不是那么猶豫，這樣的事情就絕對(duì)不會(huì)發(fā)生。我覺得這是在提醒我，當(dāng)初我得到這個(gè)天賜大禮，那么多人渴望我卻不想要，有多愚蠢而荒謬。我覺得很羞愧——我永遠(yuǎn)無法成為我爸爸那樣的父親，而且我痛恨讓他看到我的失敗。

　 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，有一晚我問父親有沒有什么睿智的話可以告訴我。我當(dāng)時(shí)在開玩笑，但他當(dāng)真了，我所有的問題他都會(huì)當(dāng)真?！斑?，”他說，“當(dāng)父母最困難的一件事就是重新調(diào)整。你這方面做得越好，就越能成為好父母。”

　 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.

當(dāng)時(shí)我?guī)缀醢堰@句忠告當(dāng)成耳邊風(fēng)，但是雅各布后來病得越重，我就越常想到這句話。我們都說希望子女快樂，只要快樂、健康就好，但我們其實(shí)不是這樣想。我們都希望他們跟我們一樣，或是比我們強(qiáng)。我們?nèi)祟愒谶@方面非常缺乏想象力，無法想象子女有可能比我們差。但我猜想那樣的要求太多了。那一定是某種進(jìn)化上的權(quán)宜措施——如果我們都這么明確、清楚地意識(shí)到哪些地方可能錯(cuò)得離譜，我們就不會(huì)生小孩了。