從某種意義上說(shuō),《當(dāng)呼吸化為空氣》是一本未完成的書(shū),主要是因?yàn)楸A_的病情急劇惡化了。但這種未完成,恰恰也是本書(shū)真意的一部分,反映了保羅面臨的現(xiàn)實(shí)狀況。生命的最后一年,保羅筆耕不輟,完成此書(shū)成為他活著的目的,所剩無(wú)多的時(shí)日也催促他抓緊時(shí)間。他還在擔(dān)任神經(jīng)外科住院總醫(yī)生時(shí)就開(kāi)始寫(xiě)了,常常午夜時(shí)分文思如泉涌,就在床上我的身邊打開(kāi)筆記本電腦,輕輕敲擊鍵盤(pán);后來(lái),他利用躺椅上的午后時(shí)光寫(xiě)作;在腫瘤醫(yī)生的候診室里也不忘寫(xiě)個(gè)幾段;化療輸液時(shí)就接編輯的電話,無(wú)論去哪里,都帶著他那個(gè)銀色的筆記本電腦。后來(lái),因?yàn)榛煟闹讣獬霈F(xiàn)了龜裂現(xiàn)象,很痛,我們就找了鑲著銀邊的無(wú)縫手套,好讓他繼續(xù)使用觸摸板和鍵盤(pán)。癌癥的惡化帶來(lái)令人痛苦萬(wàn)分的疲憊感,但他還是采取了一些策略,保持頭腦清醒,繼續(xù)寫(xiě)作。這也是他緩和醫(yī)療的重點(diǎn)。他決心堅(jiān)定,一直堅(jiān)持。
When Breath Becomes Air is, in a sense, unfinished, derailed by Paul’s rapid decline, but that is an essential component of its truth, of the reality Paul faced. During the last year of his life, Paul wrote relentlessly, fueled by purpose, motivated by a ticking clock. He started with midnight bursts when he was still a neurosurgery chief resident, softly tapping away on his laptop as he lay next to me in bed; later he spent afternoons in his recliner, drafted paragraphs in his oncologist’s waiting room, took phone calls from his editor while chemotherapy dripped into his veins, carried his silver laptop everywhere he went. When his fingertips developed painful fissures because of his chemotherapy, we found seamless, silver-lined gloves that allowed use of a trackpad and keyboard. Strategies for retaining the mental focus needed to write, despite the punishing fatigue of progressive cancer, were the focus of his palliative-care appointments. He was determined to keep writing.
這本書(shū)言辭懇切,本來(lái)寫(xiě)的時(shí)候就在和時(shí)間賽跑,表達(dá)的也全是保羅認(rèn)為重要的心聲。無(wú)論是作為醫(yī)生,還是病人,他一直都與死神面對(duì)面:檢驗(yàn)、對(duì)抗和接受。他想幫助人們理解死亡,并直面自己必死的命運(yùn)。現(xiàn)在,三十幾歲就去世的人算是少見(jiàn),但死亡并不少見(jiàn)。“肺癌并不是什么天外來(lái)客,”保羅在寫(xiě)給最好的朋友羅賓的一封電子郵件中說(shuō),“得了肺癌,的確悲慘,但也可以想象??梢宰屪约荷砼R其境,感受一下,說(shuō):‘原來(lái)是這樣一種感覺(jué)……遲早我可能也會(huì)親自走到這一步?!@可能就是我的目的。不去嘩眾取寵地用死亡煽情,也不老生常談地勸大家‘花開(kāi)堪折直須折’,而是告訴大家這一路上到底會(huì)面對(duì)什么。”當(dāng)然,他所做的遠(yuǎn)不止為大家描述一路的狀況,還以自己的血肉之軀,勇敢地在這險(xiǎn)境中跋山涉水。
This book carries the urgency of racing against time, of having important things to say. Paul confronted death—examined it, wrestled with it, accepted it—as a physician and a patient. He wanted to help people understand death and face their mortality. Dying in one’s fourth decade is unusual now, but dying is not. “The thing about lung cancer is that it’s not exotic,” Paul wrote in an email to his best friend, Robin. “It’s just tragic enough and just imaginable enough. [The reader] can get into these shoes, walk a bit, and say,‘So that’s what it looks like from here. . . sooner or later I’ll be back here in my own shoes.’ That’s what I’m aiming for, I think. Not the sensationalism of dying, and not exhortations to gather rosebuds, but: Here’s what lies up ahead on the road.” Of course, he did more than just describe the terrain. He traversed it bravely.
我們身處對(duì)死亡避而不談的文化,而保羅決定毫不避諱地直面死亡,這種剛毅和勇氣正是我們所倡導(dǎo)和敬佩的。他的力量中有抱負(fù)和努力,但也有柔韌,有著與苦澀截然相反的味道。他的大半生都在反復(fù)思考如何度過(guò)充滿意義的一生,而這本書(shū)也對(duì)這個(gè)核心領(lǐng)域進(jìn)行了探索?!邦A(yù)言者總是發(fā)言者,”愛(ài)默生寫(xiě)道,“他的夢(mèng)總會(huì)以某種方法公之于眾,他總會(huì)用肅穆的喜悅將其昭告天下?!睂?xiě)這本書(shū),就是保羅這個(gè)勇敢的預(yù)言者成為發(fā)言者的一個(gè)機(jī)會(huì),教會(huì)我們坦誠(chéng)地直面死亡。
Paul’s decision not to avert his eyes from death epitomizes a fortitude we don’t celebrate enough in our death-avoidant culture. His strength was defined by ambition and effort, but also by softness, the opposite of bitterness. He spent much of his life wrestling with the question of how to live a meaningful life, and his book explores that essential territory. “Always the seer is a sayer,” Emerson wrote. “Somehow his dream is told; somehow he publishes it with solemn joy.” Writing this book was a chance for this courageous seer to be a sayer, to teach us to face death with integrity.
在這本書(shū)出版之前,我們的家人和朋友應(yīng)該大都對(duì)保羅住院醫(yī)生生涯后期我倆之間的婚姻問(wèn)題毫不知情,但我很高興保羅在書(shū)中寫(xiě)到了這件事。這是我們生活真相的一部分,也是對(duì)保羅與我生命的重新定義,這其中有掙扎,有救贖,也充滿意義。他被診斷出癌癥,就像一把胡桃?jiàn)A子夾破了我們婚姻中堅(jiān)硬的隔閡,讓我們重新回到那充滿營(yíng)養(yǎng)的柔軟內(nèi)核之中。我們彼此支撐依賴,只求他的身體安好,兩人的精神不倒,我們以完全坦誠(chéng)的愛(ài)相濡以沫。我們各自都對(duì)很親密的朋友開(kāi)過(guò)同樣的玩笑,說(shuō)挽救婚姻關(guān)系的秘訣,就是其中一人患上絕癥。相反地,我們其實(shí)是明白了,直面絕癥的方法之一,就是深?lèi)?ài)——袒露自己的脆弱,滿懷善良、慷慨與感恩。他被確診后的幾個(gè)月,我們并排站在教堂的一排座位前,一起唱著贊美詩(shī)《仆從之歌》。對(duì)于共同面對(duì)未來(lái)的不確定與痛苦的我們來(lái)說(shuō),歌詞充滿了振聾發(fā)聵的意義:“我將分享你的喜樂(lè)與傷悲/直到這一路攜手共度。”
Most of our family and friends will have been unaware, until the publication of this book, of the marital trouble Paul and I weathered toward the end of his residency. But I am glad Paul wrote about it. It’s part of our truth, another redefinition, a piece of the struggle and redemption and meaning of Paul’s life and mine. His cancer diagnosis was like a nutcracker, getting us back into the soft, nourishing meat of our marriage. We hung on to each other for his physical survival and our emotional survival, our love stripped bare. We each joked to close friends that the secret to saving a relationship is for one person to become terminally ill. Conversely, we knew that one trick to managing a terminal illness is to be deeply in love—to be vulnerable, kind, generous, grateful. A few months after his diagnosis, we sang the hymn “The Servant Song” while standing side by side in a church pew, and the words vibrated with meaning as we faced uncertainty and pain together: “I will share your joy and sorrow / Till we’ve seen this journey through.”
確診之后,保羅立刻對(duì)我說(shuō),在他過(guò)世之后一定要再婚。而他在整個(gè)與病魔抗?fàn)幍倪^(guò)程中,種種行動(dòng)也充分體現(xiàn)了這句話背后的目的。他努力努力再努力,就是要保障我的未來(lái),不遺余力地確保我能繼續(xù)好好生活,不用擔(dān)心財(cái)務(wù)問(wèn)題,安心工作奔事業(yè),并享受一個(gè)母親的天倫之樂(lè)。與此同時(shí),我也努力努力再努力,確保他此時(shí)此刻和剩下的時(shí)日能過(guò)得盡可能地好。我追蹤和監(jiān)管他所有的癥狀和醫(yī)療護(hù)理,面面俱到,無(wú)微不至。這大概是我醫(yī)生生涯中最重要的工作。我還支持他的抱負(fù)和夢(mèng)想,在燈光昏暗、安全感滿滿的臥室里與他擁抱,聽(tīng)他低聲傾訴自己的恐懼,見(jiàn)證他的努力,肯定他的勇氣,接受眼前的現(xiàn)實(shí),撫慰他的情緒。我們恢復(fù)了醫(yī)學(xué)生時(shí)代的形影不離,那時(shí)候我們連聽(tīng)課都手拉著手?,F(xiàn)在,做完化療走出醫(yī)院大門(mén)的時(shí)候,我們也在他的大衣口袋里手拉著手。即使天氣轉(zhuǎn)暖,保羅仍然穿著厚厚的冬大衣,戴著帽子。他知道自己永遠(yuǎn)不會(huì)孤零零一個(gè)人,永遠(yuǎn)不會(huì)承受不必要的痛苦。他去世前的幾個(gè)星期,我們待在家里,躺在床上。我問(wèn)他:“我像這樣把頭靠在你胸上,你呼吸沒(méi)問(wèn)題吧?”他回答:“只有這樣,我才知道怎么呼吸?!北A_和我在彼此的生命中都有著深刻的意義,這是我一生最大的福佑之一。
When Paul told me, immediately after his diagnosis, to remarry after he died, it exemplified the way he would, throughout his illness, work hard to secure my future. He was fiercely committed to ensuring the best for me, in our finances, my career, what motherhood would mean. At the same time, I worked hard to secure his present, to make his remaining time the best it could be, tracking and managing every symptom and aspect of his medical care—the most important doctoring role of my life—while supporting his ambitions, listening to his whispered fears as we embraced in the safety of our darkened bedroom, witnessing, acknowledging, accepting, comforting. We were as inseparable as we had been as medical students, when we would hold hands during lectures. Now we held hands in his coat pocket during walks outside after chemotherapy, Paul in a winter coat and hat even when the weather turned warm. He knew he would never be alone, never suffer unnecessarily. At home in bed a few weeks before he died, I asked him, “Can you breathe okay with my head on your chest like this?” His answer was “It’s the only way I know how to breathe.” That Paul and I formed part of the deep meaning of each other’s lives is one of the greatest blessings that has ever come to me.
我們倆也都從保羅的家人那里汲取了力量。他們?cè)诒A_患病期間一直支持著我們,并幫助我們產(chǎn)下自己的孩子,讓她也成為這個(gè)家的一員。得知兒子罹患絕癥,保羅的父母當(dāng)然震驚而痛苦,但仍然給予了我們堅(jiān)定的撫慰和安全感。他們?cè)谖覀兗腋浇饬碎g公寓,經(jīng)常來(lái)探望。保羅的爸爸幫他揉腳,媽媽常常做美味的印度薄餅,蘸酸辣椰醬吃。保羅、吉旺和蘇曼常常懶洋洋地躺在我們家的沙發(fā)上。保羅的腿支起來(lái)好減輕背部的疼痛。他們?nèi)值荛e扯著橄欖球賽的排兵布陣。吉旺的妻子艾米麗和我就在一邊哈哈大笑。而卡迪則和她的堂姐伊芙、堂哥詹姆斯一同安睡。那些美好的午后,我們家的客廳就像個(gè)安寧的小村莊。后來(lái),也是在同一個(gè)房間,保羅坐在寫(xiě)字椅上,抱著卡迪,大聲朗讀羅伯特·弗羅斯特、艾略特和維特根斯坦等人的著作,我則忙著拍照。這些簡(jiǎn)單輕松的時(shí)刻洋溢著美好與福佑,甚至可以說(shuō)是我們每個(gè)人的好運(yùn),如果這個(gè)世界上存在運(yùn)氣這種東西的話。我們發(fā)自內(nèi)心地感到幸運(yùn),充滿感恩,為我們的家人,為朋友的陪伴,為一生的機(jī)遇,為我們的女兒,為我們?cè)陉P(guān)鍵時(shí)刻都能給予對(duì)方絕對(duì)的信任和接受。雖然過(guò)去這幾年我們過(guò)得很艱難,有時(shí)甚至產(chǎn)生走不下去的感覺(jué),但這同時(shí)也是我一生中最美妙、意義最深遠(yuǎn)的歲月——每天都在生與死之間采取著行動(dòng),喜樂(lè)與痛苦平衡并存,進(jìn)一步深入探索感恩與愛(ài)。
Both of us drew strength from Paul’s family, who bolstered us as we weathered his illness and supported us in bringing our own child into the family. Despite stunning grief over their son’s illness, his parents remained an unwavering source of comfort and security. Renting an apartment nearby, they visited often, Paul’s father rubbing his feet, his mother making him Indian dosa with coconut chutney. Paul, Jeevan, and Suman lounged on our sofas, Paul’s legs propped up to alleviate his back pain, discussing the “syntax” of football plays. Jeevan’s wife, Emily, and I laughed nearby while Cady and her cousins, Eve and James, napped. On those afternoons, our living room felt like a small, safe village. Later in that same room, Paul would hold Cady in his writing chair, reading aloud works by Robert Frost, T.S. Eliot, Wittgenstein, as I snapped photos. Such simple moments swelled with grace and beauty, and even luck, if such a concept can be said to exist at all. And yet we did feel lucky, grateful—for family, for community, for opportunity, for our daughter, for having risen to meet each other at a time when absolute trust and acceptance were required. Although these last few years have been wrenching and difficult—sometimes almost impossible—they have also been the most beautiful and profound of my life, requiring the daily act of holding life and death, joy and pain in balance and exploring new depths of gratitude and love.
依靠自己的力量以及親朋好友們的支持,保羅以優(yōu)雅的姿態(tài)面對(duì)病痛的每一個(gè)階段——他沒(méi)有故作勇敢,也沒(méi)有懷著虛妄的信念,認(rèn)為可以“克服”或者“戰(zhàn)勝”癌癥。他坦然真誠(chéng),自己本來(lái)規(guī)劃好的未來(lái)變得無(wú)望,他表示悲痛,但同時(shí)又創(chuàng)造了一個(gè)新的未來(lái)。確診那天,他哭了??粗∈溢R子上我們畫(huà)的畫(huà),寫(xiě)的字——“我余生每一天都想和你一起待在這里”,他哭了。在手術(shù)室的最后一天,他哭了。他允許自己敞開(kāi)心扉,展露脆弱,接受別人的安慰。就算身患絕癥,保羅也活得非常充實(shí)。就算身體已然垮掉,他還是精力充沛,開(kāi)朗大方,充滿希望,當(dāng)然不是奢望能病愈,而是希望充實(shí)地度過(guò)目標(biāo)明確、意義深遠(yuǎn)的每一天。
Relying on his own strength and the support of his family and community, Paul faced each stage of his illness with grace—not with bravado or a misguided faith that he would “overcome” or “beat”cancer but with an authenticity that allowed him to grieve the loss of the future he had planned and forge a new one. He cried on the day he was diagnosed. He cried while looking at a drawing we kept on the bathroom mirror that said, “I want to spend all the rest of my days here with you.” He cried on his last day in the operating room. He let himself be open and vulnerable, let himself be comforted. Even while terminally ill, Paul was fully alive; despite physical collapse, he remained vigorous, open, full of hope not for an unlikely cure but for days that were full of purpose and meaning.