THE MIRACLE OF DEATH

死亡的奇跡

There’s something transcendent about facing death and not backing down. In not skirting around it but walking through it—a fire that burns away everything but the most essential parts of you. It becomes clear, suddenly, what you most want, who you are at your core, what you are meant to do with your time here. It clarifies, like nothing else can, what it means for you to “heal your identity” and create a new story for the rest of your life.

面對死亡而不退縮是超然的。不是繞過它，而是穿過它——一團火，除了你最基本的部分之外，什麼都燒掉了。突然之間，你最想要什麼變得清晰起來，你的核心是誰，你在這裡的時間應該做什麼。它以其他任何方式都無法闡明，“治癒你的身份”並為你的餘生創造一個新故事對你意味著什麼。

One way to look at it is that there is a kind of figurative “death” of the false self. Many survivors describe it in these terms and in fact tell me repeatedly that their illnesses were their greatest gifts, because they liberated their true selves. By dying, they found life. By facing the worst that could happen and moving through it, they excised the “disease of fear” that binds all of us and then realized that, unexpectedly, they were free to live.

一種看待它的方法是，存在一種假自我的比喻性“死亡”。許多倖存者用這些詞來描述它，事實上，他們反覆告訴我，他們的疾病是他們最大的禮物，因為他們解放了真實的自我。通過死亡，他們找到了生命。通過面對可能發生的最壞情況並度過它，他們消除了束縛我們所有人的“恐懼病”，然後出乎意料地意識到，他們可以自由地生活。

As Claire said to me, confronting her own death was the thing that made it all possible: reevaluating who she was and what she wanted with her time here, living authentically, making radical change. And Mirae said that getting the cancer diagnosis “gave her permission” to stop living the way everyone expected and do what she really wanted.

正如 Claire 對我說的那樣，面對自己的死亡是讓這一切成為可能的事情：重新評估她是誰，她在這裡想要什麼，真實地生活，做出徹底的改變。Mirae說，被診斷出癌症“讓她允許”停止按照大家期望的方式生活，去做她真正想做的事。

Confrontation with death allows us to be the person we each want to be and really are, rather than the person others need us to be. It can be the final thing that pushes us to heal our identities, shifting us into authentic, fulfilling lives, moving us more permanently and fully into the parasympathetic. An understanding of our own mortality—sparked for many by a terminal diagnosis—can be the catalyst that causes a major shift in understanding as to who we are underneath it all. It can be the switch that flips, causing that fundamental figure-ground shift. We can suddenly see ourselves clearly for the first time. Other priorities drop away. We are liberated to our authentic selves.

與死亡對抗使我們能夠成為我們每個人都想成為的人，而不是別人需要我們成為的人。這可能是推動我們治癒身份的最後一件事，將我們轉變為真實、充實的生活，讓我們更持久、更充分地進入副交感神經。對我們自己的死亡的理解——對許多人來說，是由絕症診斷引發的——可以成為催化劑，導致人們對這一切背後的我們是誰的理解發生重大轉變。可能是開關翻轉，導致基本的圖形-接地偏移。我們突然第一次可以清楚地看到自己。其他優先事項消失了。我們被解放到真實的自我。

When you shed an old mode of being in the world, it means complete freedom to build or reclaim an identity that is not disease-based or deficit-based. You can build this sense of self on what is right with you, rather than what is wrong.

當你擺脫了舊的生存模式時，這意味著完全自由地建立或恢復一個不是基於疾病或赤字的身份。你可以把這種自我意識建立在你對的事情上，而不是你錯的事情上。

But there are certainly ways in which a terminal diagnosis can box you in instead of freeing you—people who acquiesce to a prognosis, performing it to the letter. So what makes the difference between accepting death in a way that is limiting, versus accepting it in a way that is liberating? And what exactly is involved in “healing” death? What does facing death really mean?

但是，肯定有一些方式，絕症診斷可以讓你陷入困境，而不是讓你自由——那些默許預後的人，不折不扣地執行它。那麼，以限制的方式接受死亡與以解放的方式接受死亡有什麼區別呢？治癒「死亡究竟涉及什麼？面對死亡的真正含義是什麼？

Let’s start with what it doesn’t mean. First of all, accepting your own mortality does not mean curling up and waiting to die. It doesn’t mean acquiescing to a prognosis that isn’t true to your specific, unique, and personal situation. Those who experienced spontaneous remissions had something important in common, whether their illnesses were chronic or terminal: something inside them rose up, saying they were people rather than prognoses.

讓我們從它不意味著什麼開始。首先，接受自己的死亡並不意味著蜷縮起來等待死亡。這並不意味著默許不符合您的特定、獨特和個人情況的預測。那些經歷過自發緩解的人有一些重要的共同點，無論他們的疾病是慢性的還是絕症的：他們內心的某些東西升起，說他們是人而不是預後。

REFUSING TO DIE ON SCHEDULE

拒絕按時死亡

It’s easy to hear a prognosis—your doctor’s best guess of how your illness will progress—and see it as a prophecy. But doctors don’t have crystal balls. They can’t see into the future.

很容易聽到預後——醫生對你的疾病將如何發展的最佳猜測——並將其視為一個預言。但醫生沒有水晶球。他們看不到未來。

A prognosis is the most likely course of an illness, based on what we’ve seen and documented in the past. It’s far from a sure thing. A prognosis is arrived at by examining all the available data on an illness and taking the mean, or the average, of that data. We home in on the spot on the chart where most of the little dots are clustered, forming a dense little cloud. Meanwhile, more dots stretch on in both directions, representing the full scatter of possibilities: the unlucky who turned out to have less time than expected, and then the exceptional, who vastly outperform our expectations. This chart, upon which all our prognoses are based, doesn’t capture the fact that, just as a rain cloud is made up of individual droplets of water, each of these dots is a unique individual. That single black point represents a human life. And many, many of those dots fall outside the mean. A prognosis, by definition, absorbs the exceptional into its averages and obscures it.

預後是根據我們過去所看到和記錄的情況，最有可能的病程。這遠非一件確定的事情。通過檢查有關疾病的所有可用數據並取該數據的平均值或平均值來得出預後。我們在圖表上找到大多數小點聚集的地方，形成一個密集的小雲。與此同時，更多的點向兩個方向延伸，代表著各種可能性的全部分散：不幸的時間比預期的要少，然後是表現大大超出我們預期的例外。我們所有預測都基於這張圖表，它並沒有捕捉到這樣一個事實，即就像雨雲由單獨的水滴組成一樣，這些點中的每一個都是一個獨特的個體。那個黑點代表著一條人的生命。而且很多很多這些點都超出了平均值。根據定義，預測將例外吸收到其平均值中並掩蓋它。

The question then is: Do most of us fulfill our prognoses because they truly are the most likely inevitable outcome? Or do we fulfill them because we believe them? Do we manifest them because they’re what we expect, thereby giving more weight to these averages?

那麼問題是：我們大多數人是否實現了我們的預測，因為它們確實是最有可能的必然結果？還是因為我們相信它們而實現它們？我們之所以表現出來，是因為它們是我們所期望的，從而給予這些平均值更多的權重嗎？

Perhaps we simply continue on the biochemical trajectory we’re already on. Our doctors evaluate that trajectory and try to logically predict where we’ll land—like watching a ball come off a bat and arc through the sky. You can use your experience as a baseball fan, your knowledge of the game, and your basic understanding of physics and gravity to make a really good guess. But when people like Claire, Juniper, Pablo, Matt, Jan, Patricia, and Jerry introduce deep mental and spiritual change into their lives, this also has biochemical consequences, and it changes their trajectory. Instead of landing in the outfield like they’re supposed to, they caught an updraft and went sailing right out of the ballpark.

也許我們只是繼續沿著我們已經走的生化軌跡前進。我們的醫生會評估該軌跡，並嘗試邏輯地預測我們將落在何處，就像看著球從球棒上飛出並在天空中劃出弧線一樣。您可以利用您作為棒球迷的經驗、您對比賽的瞭解以及您對物理學和重力的基本理解來做出非常好的猜測。但是，當像 Claire、Juniper、Pablo、Matt、Jan、Patricia 和 Jerry 這樣的人在他們的生活中引入深刻的心理和精神變化時，這也會產生生化後果，並改變他們的軌跡。他們沒有像應該的那樣降落在外場，而是抓住了上升氣流，直接駛出了球場。

In the medical world, debates tend to flare up about whether or not telling people their prognoses can actually affect the outcome of their illnesses. Some studies have suggested that giving people a time frame means that’s how long they last—that they die “on schedule,” as if obediently following orders. As doctors, we tend to err on the side of giving all the information we can—but should we? If hope is medicine, and if belief can change the body’s biology, then are we remiss as caregivers when we offer no hope, when our patients believe our guesses that they only have a short time to live?

在醫學界，關於告訴人們他們的預後是否真的會影響他們的疾病結果的爭論往往會爆發。一些研究表明，給人們一個時間框架意味著他們能持續多久——他們“按時”死去，就像順從地服從命令一樣。作為醫生，我們往往會在提供所有能提供的資訊方面犯錯——但我們應該這樣做嗎？如果希望是良藥，如果信念可以改變身體的生物學特性，那麼當我們沒有提供希望時，當我們的病人相信我們的猜測，認為他們只剩下短暫的生命時，我們作為照顧者是否失職了？

On a rainy Sunday in April, as I was driving into work to do rounds, I punched on the radio and began flipping stations. I was stuck in traffic, and the squeaky percussion of the windshield wipers wasn’t doing much to entertain me. I happened to tune in during an episode of This American Life, and right away, I was hooked. The episode was called “In Defense of Ignorance,”¹ and it centered on the theory that maybe, sometimes, ignorance is bliss. Perhaps there were times in life when it was beneficial—even lifesaving—not to know something.

4 月的一個下雨的星期天，當我開車去上班查房時，我敲了敲收音機並開始翻轉電臺。我被堵在了車流中，擋風玻璃雨刷器吱吱作響的敲擊聲並沒有給我帶來太大的樂趣。我碰巧在《美國生活》的一集中收聽了節目，然後我立刻就被迷住了。這一集叫做“為無知辯護”¹，它的核心理論是，也許，有時，無知是福。也許在生活中的某個時候，不知道某事是有益的——甚至是挽救生命的。

Lulu Wang, a filmmaker, told the story of her grandmother, the feisty matriarch of a large Chinese family. Wang described her grandmother, Nai-Nai, as “five feet tall with a full head of permed white hair. She’s small, but when Nai-Nai walks into a room, everyone listens.” At the age of eighty, Wang’s grandmother went in for a routine physical and was diagnosed with terminal, stage IV lung cancer. The doctors predicted she had less than three months to live and recommended that she be hospitalized immediately.

電影製作人王璐璐（Lulu Wang）講述了她的祖母的故事，她是一個中國大家庭的好鬥的女族長。Wang 形容她的祖母 Nai-Nai “身高 5 英尺，有一頭燙過的白髮。她個子矮小，但當 Nai-Nai 走進一個房間時，每個人都在聽。80 歲時，Wang 的祖母去做了例行體檢，被診斷出患有晚期 IV 期肺癌。醫生預測她只剩下不到三個月的壽命，並建議她立即住院治療。

In some cultures—like China, where Wang’s story takes place—attitudes toward patients’ rights and the involvement of families in care decisions are a little different from how they are in the United States. It’s acceptable, even advised, to withhold information from a patient about their diagnosis and prognosis if the news is too bleak. There’s a communal aspect to decisions like these regarding illnesses and how to proceed, and it’s not unusual for doctors to inform the family of the patient first, who are allowed to decide how, when, or even if to reveal details of the illness to the patient. In the United States and other Western countries, we take a much more individualistic tack: the patient is the first and often only one to speak to their doctor. Privacy and autonomy are paramount.

在一些文化中——比如王的故事發生的中國——對患者權利和家庭參與護理決策的態度與美國的態度略有不同。如果消息太黯淡，向患者隱瞞有關其診斷和預後的資訊是可以接受的，甚至是建議的。像這樣的關於疾病和如何進行的決定具有公共性的一面，醫生首先通知患者家屬並不罕見，他們可以決定如何、何時甚至是否向患者透露疾病的詳細資訊。在美國和其他西方國家，我們採取更加個人主義的策略：患者是第一個，而且往往是唯一一個與醫生交談的人。隱私和自主權至關重要。

The decision to hide a terminal illness from someone might seem shocking and unethical to many. But that’s exactly what the Wang family did. It wasn’t Wang’s grandmother who trekked into the doctor’s office to hear the results of her physical—it was her younger sister. And after a family conference, they collectively decided not to tell Nai-Nai her diagnosis.

對許多人來說，向某人隱瞞絕症的決定似乎令人震驚和不道德。但這正是王家所做的。跋涉到醫生辦公室聽她體檢結果的不是 Wang 的祖母，而是她的妹妹。在一次家庭會議之後，他們共同決定不告訴 Nai-Nai 她的診斷結果。

The doctors were appalled. They insisted that not hospitalizing her was grossly irresponsible—the cancer was very advanced. But there was no way to hospitalize her without telling her the diagnosis. And Nai-Nai’s younger sister (Wang’s great-aunt, whom she referred to as “Little Nai-Nai”) feared that learning this diagnosis would be a blow she might never recover from. She believed that not telling her sister she was dying might be a way to prolong her life. “It wasn’t just that she didn’t want to upset her sister with the news of her death,” Wang recounted over the airwaves. “She actually believed that not telling her was a way to prolong her life. Knowing Nai-Nai’s personality, Little Nai-Nai worried that her sister would get overwhelmed with fear and depression. She’d stop eating, she’d stop sleeping, she’d lose interest in life. The Chinese believe that mental and emotional health are completely linked to physical health.”

醫生們感到震驚。他們堅持認為，不讓她住院是非常不負責任的——癌症已經非常晚期了。但是，如果不告訴她診斷結果，就無法將她送入醫院。而 Nai-Nai 的妹妹（Wang 的姑姑，她稱她為“小 Nai-Nai”）擔心得知這一診斷結果會對她造成打擊，她可能永遠無法從中恢復過來。她認為，不告訴姐姐她快要死了可能是延長她生命的一種方式。“不僅僅是她不想讓姐姐的死訊難過，”王在電波中回憶道。“她實際上認為不告訴她是延長她生命的一種方式。小奈奈知道奈奈的性格，擔心姐姐會被恐懼和抑鬱所淹沒。她會停止進食，不再睡覺，她會對生活失去興趣。中國人認為，心理和情緒健康與身體健康完全相關。

The family sought a second opinion, and then a third, hoping that the diagnosis was perhaps in error, but the diagnosis was airtight, and the prognosis was always the same: “Three months, maybe less.” So they forged a report from Nai-Nai’s physician, whiting out the terminal cancer results, and making a fake photocopy of the test results to fool her. So that their grandmother wouldn’t be suspicious about people wanting to see her before she died, they threw a huge party under the auspices of a wedding—the bride and groom had planned to get married the following year, but they bumped up the celebration so that everyone could convene without Nai-Nai guessing why. At the gathering, while everyone put on smiles and secretly, internally said their goodbyes, Wang’s grandmother “remained focused on the future—a future she assumed she’d be a part of.”

家人尋求第二種意見，然後是第三種意見，希望診斷可能是錯誤的，但診斷是無懈可擊的，預後總是一樣的：“三個月，也許更短。所以他們偽造了奈奈醫生的報告，刪減了癌症晚期的結果，並偽造了測試結果的複印件來欺騙她。為了不讓他們的祖母在去世前懷疑人們想見她，他們在婚禮的贊助下舉辦了一場盛大的派對——新娘和新郎本來計劃在明年結婚，但他們提高了慶祝活動，這樣大家就可以聚集在一起，而奈奈不會猜到為什麼。在聚會上，當每個人都面帶微笑並在內心偷偷道別時，Wang 的祖母“仍然專注於未來——她認為自己會成為其中的一部分。

They expected her to decline quickly and pass away. But she just … didn’t.

他們預計她會迅速衰落並去世。但她只是......不。

A year after her “expiration date” had passed, she was the same. She seemed healthy. She refused to go to her physical that year, saying that she felt good—what was the point? Another year passed, and when she went to the doctor, the diagnosis was the same. Stage IV lung cancer, three months to live. And the next year, the same.

在她的“到期日”過了一年後，她還是一樣。她看起來很健康。那一年她拒絕去做體檢，說她感覺很好——這有什麼意義呢？又過了一年，當她去看醫生時，診斷結果是一樣的。IV 期肺癌，還剩三個月的壽命。接下來的一年，也是一樣。

Yet Nai-Nai’s body seemed paused in a state of stasis, the disease neither advancing nor regressing. The years went by, and nothing changed. Her body, it seemed, had not gotten the message that it was supposed to be getting sicker. So it just didn’t.

然而，奈奈的身體似乎停滯在了停滯狀態中，疾病既沒有進展也沒有退化。歲月流逝，一切都沒有改變。她的身體似乎沒有得到它應該病得更重的資訊。所以它就是沒有。

As Wang interviewed her great-aunt on the air, Little Nai-Nai told a well-known Chinese joke. It went roughly like this: Two people go to the doctor for a physical. One is healthy; the other has a terminal illness. But the office staff gets the results switched and they each receive the other person’s prognosis. The healthy person dies, while the terminally ill person lives.

當 Wang 在廣播中採訪她的姑姑時，小 Nai-Nai 講了一個著名的中國笑話。大致是這樣的：兩個人去看醫生做體檢。一個是健康的;另一個患有絕症。但是辦公室工作人員會交換結果，他們每個人都會收到對方的預後。健康的人死了，而身患絕症的人活著。

“Is that really a joke?” Wang asked her aunt. “It’s not very funny.”

“這真的是個笑話嗎？”王問她的阿姨。“這不是很好笑。”

“Oh yes,” her aunt replied, laughing.

“哦，是的，”她的姨媽笑著回答。

As I did my rounds that night, I thought about whether it helps or hurts to know about a terminal diagnosis. Are we doing it all wrong? When we offer our well-researched, carefully calibrated prognoses, plucked from the averages on a graph, are we dooming people to that fate?

那天晚上我查房時，我在想瞭解終末診斷是有幫助還是有害。我們做錯了嗎？當我們提供經過充分研究、仔細校準的預測，從圖表上的平均值中摘取時，我們是否註定了人們的命運？

In my experience as a physician and psychiatrist, I’ve seen many people feel oppressed by knowing a lot about their prognosis. A terminal diagnosis crushes them. They feel afraid, hopeless, and doomed. But the response is very individual—everyone responds differently. Some people actually seem to feel empowered by learning their diagnosis and hearing their doctor’s best guess as to how it will progress. For them, knowledge is power. They know where they stand, see the lay of the land, and can take their health into their own hands. They can map out their own paths. They can confront the reality of their deaths, and then, instead of a wall, it becomes a doorway, and they pass through it.

根據我作為醫生和精神科醫生的經驗，我看到許多人因為瞭解了很多自己的預後而感到壓迫。一個終末診斷讓他們崩潰了。他們感到害怕、絕望和註定要失敗。但反應非常個人化——每個人的反應都不同。有些人實際上似乎通過瞭解他們的診斷並聽到醫生對病情進展的最佳猜測而感到有力量。對他們來說，知識就是力量。他們知道自己的立場，看到土地的地形，並且可以將自己的健康掌握在自己手中。他們可以規劃自己的道路。他們可以面對自己死亡的現實，然後，它不是一堵牆，而是一扇門，他們穿過它。

There’s no real consensus that emerges from the research on withholding diagnoses—you can’t run a study where you refuse to tell people the truth about their conditions and then see what happens; it’s unethical. And even the cultures where such an approach has been widespread are beginning to push toward more agency for patients and to put more information in the hands of the individual. Ultimately, the answer is not withholding information from patients and keeping them ignorant of their condition—in none of the cases of spontaneous remission that I studied over the years did ignorance or avoidance help anyone. At the very least, people should be afforded the chance to know that their time here may be more fleeting than they’d assumed and to live the way they want in the time they have left. At the same time, we in the medical profession need to do a better job of giving prognoses in ways that empower people rather than constrain them. We need to stop being so afraid of offering “false hope” that we put hard limits on what’s possible.

關於隱瞞診斷的研究並沒有形成真正的共識——你不能在進行一項研究時拒絕告訴人們關於他們病情的真相，然後看看會發生什麼;這是不道德的。即使是這種方法已經被廣泛使用的文化也開始推動為患者提供更多的代理權，並將更多的資訊交到個人手中。歸根結底，答案不是隱瞞患者的資訊並讓他們對自己的病情一無所知——在我多年來研究的自發緩解病例中，無知或逃避對任何人都沒有説明。至少，人們應該有機會知道他們在這裡的時間可能比他們想像的更短暫，並在他們剩下的時間里按照他們想要的方式生活。與此同時，我們醫學界需要更好地提供預測，以賦予人們權力而不是限制他們。我們需要停止如此害怕提供 「虛假的希望」，以至於我們對可能性進行了嚴格的限制。

Stephen Jay Gould, a prominent evolutionary biologist who taught at Harvard for many years, was diagnosed at age forty with mesothelioma, an especially deadly form of cancer that affects the abdominal lining. He was given eight months to live. That, his doctors told him, was the “median,” so it was what he could reasonably expect. He was devastated—until he started doing his own research and realized that the “median” only represented some of the possible outcomes. Yes, there were more cases clustered there, around the middle, but there were many others scattered on both ends of the spectrum.

在哈佛大學任教多年的著名進化生物學家斯蒂芬·傑伊·古爾德 （Stephen Jay Gould） 在 40 歲時被診斷出患有間皮瘤，這是一種影響腹部內膜的特別致命的癌症。他只剩下八個月的時間。他的醫生告訴他，這是“中位數”，所以這是他可以合理預期的。他感到非常沮喪，直到他開始進行自己的研究，並意識到「中位數」只代表了一些可能的結果。是的，那裡聚集了更多的病例，大約在中間，但還有許多其他病例分散在光譜的兩端。

Realizing that the possibilities were in fact much more fluid, that there was more hope than any of his doctors had suggested, he penned an essay, a call to arms, for others facing such prognoses, titled “The Median Isn’t the Message.” I am not a number, Gould insisted in his essay. I am not a statistic. I am a human, and my life does not follow a course charted on a medical graph. Gould decided that good, rational reasons existed to support the idea that perhaps he was on the side of lengthened life, more than the median. He recovered completely from the mesothelioma, living another twenty years before dying from unrelated causes.

他意識到可能性實際上要多得多，希望比他的任何醫生都建議的要多，他寫了一篇題為《中位數不是資訊》的文章，題為《中位數不是資訊》。我不是一個數位，古爾德在他的文章中堅持說。我不是一個統計數位。我是人，我的生活並不遵循醫學圖表上繪製的路線。古爾德認為，存在良好、合理的理由來支持這樣一種觀點，即也許他站在延長壽命的一邊，而不是中位數。他從間皮瘤中完全康復，又活了 20 年，然後死於無關的原因。

Perhaps it’s less about withholding information about your prognosis and more about what kind of information we offer. Do we offer the median, constraining people to what’s “average”? Or do we offer hope? Will this person be empowered by knowing what is “average,” or more by a range of possibilities? Can we be honest, clear, and realistic, while at the same time offering people the opportunity to become exceptional?

也許與其說是隱瞞有關您的預後的資訊，不如說是關於我們提供的資訊類型。我們是否提供中位數，將人們限制在「平均」範圍內？還是我們提供希望？這個人會因為知道什麼是「平均」而獲得力量，還是通過一系列的可能性來獲得力量？我們能否誠實、清晰和現實，同時為人們提供成為卓越的機會？

In 1954, the world record for running the mile was four minutes and two seconds. For almost a decade, nobody had been able to improve on that time. In fact, some doctors didn’t think that breaking the four-minute mile was physically possible. But that year, Roger Bannister, a medical student, broke the four-minute mile on a cinder track at Oxford University. It was a major moment in sports—newspapers all over the world published the photo of Bannister crossing the finish line at three minutes and fifty-nine seconds, his face awash with relief, his body limp with exhaustion. But he wouldn’t hold the record for long. Forty-five days later, someone else broke the four-minute mile, improving on Bannister’s time by a second and a half. After that, even more were able to achieve it—to date, over five hundred athletes have run a mile in under four minutes. As soon as one person demonstrated it was possible, more were able to follow in his footsteps—what was thought to be a physiological barrier proved to be, in the end, a psychological barrier.

1954 年，跑一英里的世界紀錄是 4 分 2 秒。在將近十年的時間里，沒有人能夠改進那個時間。事實上，一些醫生認為打破 4 分鐘一英里在身體上是不可能的。但那一年，醫學生羅傑·班尼斯特 （Roger Bannister） 在牛津大學的煤渣跑道上打破了 4 分鐘的一英里紀錄。這是體育界的一個重要時刻——世界各地的報紙都刊登了班尼斯特以 3 分 59 秒衝過終點線的照片，他的臉上洋溢著寬慰，身體因疲憊而癱軟。但他不會保持這個記錄太久。45 天后，其他人打破了 4 分鐘的一英里，比 Bannister 的時間提高了一秒半。在那之後，更多的運動員能夠實現這一目標——迄今為止，已有 500 多名運動員在 4 分鐘內跑完了一英里。一旦一個人證明這是可能的，就會有更多的人能夠追隨他的腳步——被認為是生理障礙的東西最終被證明是心理障礙。

Lulu Wang’s story is powerful and compelling and certainly worth folding into our developing understanding of why diseases sometimes progress and sometimes remit. But I don’t believe that the answer is keeping people in the dark about their diagnoses. Besides making unilateral decisions for people that we shouldn’t be making, we’d be robbing them of a potentially transformative experience: facing death can be a catalyst for radical life change. It is an opportunity to gain the kind of clarity that only death can bring. It has the potential to turn not only our health but also our lives around. And when we look at the big picture of spontaneous remission and look for patterns, we don’t actually see ignorance or denial as a major factor across the board. In fact, we see the opposite; we see those who experienced remissions actively engaged with their own mortality. We see them facing it, wrestling with it, coming to terms with it. In a counterintuitive twist, running away from death can hurt us more than turning toward it.

Lulu Wang 的故事有力而引人入勝，當然值得我們更深入地理解為什麼疾病有時會進展，有時會緩解。但我不相信答案是讓人們對他們的診斷一無所知。除了為人們做出我們不應該做出的單方面決定之外，我們還會剝奪他們潛在的變革體驗：面對死亡可以成為徹底改變生活的催化劑。這是一個獲得只有死亡才能帶來的那種清晰度的機會。它不僅有可能改變我們的健康，而且有可能改變我們的生活。當我們著眼於自發緩解的大局並尋找模式時，我們實際上並沒有將無知或否認視為一個全面的主要因素。事實上，我們看到的情況恰恰相反;我們看到那些經歷過緩解的人積極面對自己的死亡。我們看到他們面對它，與它搏鬥，接受它。與直覺相反，逃避死亡比轉向死亡更能傷害我們。

HOW RUNNING FROM DEATH RUNS US DOWN

逃避死亡如何使我們崩潰

In Western culture, we aren’t great at dying. I don’t mean that we don’t do it—of course we do! We all do it, eventually. What I mean is that we live in a culture that tends to push thinking about death to the side or delay thinking about it. And it’s only once we get to the end of our road that we realize we haven’t had a chance to think about not only what kind of death we want but what kind of life we want.

在西方文化中，我們並不擅長死亡。我不是說我們不這樣做——我們當然這樣做！我們最終都會這樣做。我的意思是，我們生活在一種傾向於將對死亡的思考推到一邊或延遲思考死亡的文化中。只有當我們走到路的盡頭時，我們才會意識到我們不僅沒有機會思考我們想要什麼樣的死亡，而且沒有機會思考我們想要什麼樣的生活。

We don’t have a lot of conversations about death. Not yet, we say to ourselves. I don’t have to think about this yet. We are a culture that fetishizes youth and beauty, where death is spoken about in hushed tones, privately. Even our mourning rituals have become distant and impersonal. Most of us die in hospitals, and someone else—someone we hire and don’t actually know—comes in to take care of things, taking the body away, preparing it for burial or cremation. In many cultures, the death of a loved one involves very intimate rituals intended to both honor the deceased and, at the same time, help the family members through the shock and grief of having lost someone. Washing the body before burial, for example, is a ritual that many cultures have preserved, yet we’ve cast it aside. Our ancestors participated in grieving rituals that kept them up close and personal with the reality, and the physicality, of death. But in Western culture today, there is a widespread cultural disconnect, a mass denial. Instead of dealing with death, we outsource it. We might think we’re sparing ourselves unnecessary pain and anguish, but what are we missing out on? What collateral damage are we doing to our bodies and souls?

我們沒有很多關於死亡的對話。我們還沒有，我們對自己說。我還不需要考慮這個問題。我們是一種迷戀青春和美麗的文化，私下裡以低調的語氣談論死亡。甚至我們的哀悼儀式也變得遙遠和沒有人情味。我們大多數人都在醫院死去，而其他人——我們雇傭但實際上並不認識的人——進來照顧事情，把屍體帶走，準備埋葬或火化。在許多文化中，親人的死亡涉及非常親密的儀式，旨在紀念逝者，同時説明家庭成員度過失去某人的震驚和悲傷。例如，在下葬前清洗遺體是許多文化都保留的一種儀式，但我們已經把它拋在一邊了。我們的祖先參加了悲傷的儀式，這使他們與死亡的現實和身體密切相關。但在今天的西方文化中，存在著一種普遍的文化脫節，一種大規模的否認。我們不是處理死亡，而是將其外包。“我們可能認為我們為自己省去了不必要的痛苦和痛苦，但我們錯過了什麼呢？我們對自己的身體和靈魂造成了哪些附帶傷害？

When we think we have all the time in the world, we are less likely to take advantage of the time we really have. Not only can our inability to face death keep us from living the life we truly want and need to live, it can also harm our physical health. Take, for example, the conundrum of hospice care. You may read the word hospice and have an immediate negative connotation; it probably makes you think immediately of death. And indeed, hospice care is end-of-life care. It can occur at a nursing home or other type of facility, but it often occurs at the patient’s home. In a nutshell, hospice means that your illness is terminal and you are no longer trying to treat it. Instead, the focus is on comfort. For a lot of patients, this means pain management, and hospice care providers are fluent in the language of pain relief. But hospice care is often much more than that. It’s not only helping patients be as comfortable and feel as well as possible given the circumstances, it’s also helping them make the most of the time remaining. Sometimes hospice involves therapy and goal-setting. It incorporates attending not only to the urgent physical needs of the patient but to the urgent emotional and spiritual needs as well.

當我們認為我們擁有世界上所有的時間時，我們不太可能利用我們真正擁有的時間。我們無法面對死亡不僅會阻止我們過上我們真正想要和需要的生活，還會損害我們的身體健康。以臨終關懷的難題為例。你可能會讀到臨終關懷這個詞，並立即產生負面含義;它可能會讓你立即想到死亡。事實上，臨終關懷就是臨終關懷。它可能發生在療養院或其他類型的設施中，但通常發生在患者家中。簡而言之，臨終關懷意味著您的疾病已達到絕症，您不再嘗試治療它。相反，重點是舒適度。對於許多患者來說，這意味著疼痛管理，而臨終關懷提供者能流利地使用緩解疼痛的語言。但臨終關懷往往遠不止於此。它不僅可以説明患者在具體情況下盡可能舒適和感覺良好，還可以幫助他們充分利用剩餘時間。有時，臨終關懷涉及治療和目標設定。它不僅包括關注患者緊急的身體需求，還包括關注緊急的情感和精神需求。

It might not come as a shock, then, to learn that hospice care can actually extend life. While a specter of hospice persists—a person on his or her deathbed, on a morphine drip—the reality is quite different. A few years ago, The New England Journal of Medicine, one of the most prestigious medical journals, published a study that proved that terminal lung cancer patients who started hospice immediately after diagnosis lived three months longer than the control group on average. (That’s “on average,” so again, let’s remember that some people will be far outside that range.) And not only did they live longer on average, but they enjoyed a better quality of life for that extra time.

那麼，得知臨終關懷實際上可以延長生命可能並不令人震驚。雖然臨終關懷的幽靈仍然存在——一個人在臨終前，滴注嗎啡——但現實卻大不相同。幾年前，最負盛名的醫學期刊之一《新英格蘭醫學雜誌》發表了一項研究，證明在診斷后立即開始臨終關懷的晚期肺癌患者平均比對照組長壽三個月。（這是“平均”，所以讓我們再次記住，有些人會遠遠超出這個範圍。他們不僅平均壽命更長，而且在這段額外的時間里，他們享受了更好的生活品質。

When I looked at the study, there didn’t seem to be any true cases of spontaneous remission. However, the fact that the progression of disease slowed and that the well-being of the patients improved was significant. It was a clue. It told me that there was something important—essential, even—about coming to terms with death. Perhaps it brought peace and lessened anxiety. Perhaps it freed people from others’ rules and expectations. As all the survivors of incurable diseases had been telling me, there was something transformative and freeing about truly understanding the brevity, the preciousness, of your one life. And perhaps the unique approach of hospice, which is highly individualized and very patient-centered, plays a massive role.

當我查看這項研究時，似乎沒有任何自發緩解的真實案例。然而，疾病進展減慢且患者健康情況改善的事實是顯著的。這是一個線索。它告訴我，接受死亡有一些重要的東西——甚至是必不可少的。也許它帶來了平靜，減輕了焦慮。也許它使人們擺脫了他人的規則和期望。正如所有不治之症的倖存者都告訴我的那樣，真正理解你一生的短暫和珍貴，會帶來一些變革和自由。也許臨終關懷的獨特方法，即高度個人化和非常以患者為中心的方法，發揮了巨大的作用。

Hospice, when you really look at it, is a wonderful model of care. Of course, not all hospice care is created equal—philosophies and providers can vary widely in approach and skill. But hospice care represents a unique area in medicine where we often don’t just treat the mask of illness—we treat the person behind the mask, their body, heart, and mind. We find a way forward based on this unique individual, with all his or her specific needs and desires and goals. Now, imagine if we applied the principles of hospice to medicine across the board. Imagine if it were the default in medicine to consider a person’s specific and unique situation, their goals for treatment, their hard-line deal breakers for when the side effects are too much, their deep anxieties about illness and death, their hopes and dreams for their time here. What we would end up with is a patient-centered philosophy of medicine that takes into account the whole person instead of homing in so tightly on the disease that we lose the bigger picture.

當你真正看待臨終關懷時，它是一種極好的護理模式。當然，並非所有的臨終關懷都是平等的——理念和提供者在方法和技能上可能會有很大差異。但臨終關懷代表了醫學中的一個獨特領域，我們通常不僅僅是治療疾病的面具——我們還治療面具背後的人、他們的身體、心靈和思想。我們根據這個獨特的個體，以及他或她的所有特定需求、願望和目標，找到前進的道路。現在，想像一下，如果我們將臨終關懷的原則全面應用於醫學。想像一下，如果醫學上默認考慮一個人的具體和獨特情況、他們的治療目標、他們在副作用太多時採取的強硬交易破壞者、他們對疾病和死亡的深深焦慮、他們對在這裡的希望和夢想。我們最終會得到一種以患者為中心的醫學哲學，它考慮到整個人，而不是過於緊緊地關注疾病，以至於我們失去了更大的圖景。

Here’s the catch about hospice, though: to qualify for it, your physician has to attest that you have six months or less to live.

不過，關於臨終關懷，這裡有一個問題：要獲得臨終關懷的資格，您的醫生必須證明您還有六個月或更短的壽命。

Now, as we’ve learned, a doctor doesn’t know for sure what a patient’s time frame is. All they can say is that based on the normal progression of this particular illness, and on the data, six months is average. And then boom, you qualify for hospice.

現在，正如我們所瞭解的，醫生並不確定患者的時間框架是什麼。他們只能說，根據這種特定疾病的正常進展和數據，六個月是平均的。然後砰，你有資格獲得臨終關懷。

But some people won’t move to hospice—they won’t take the spot available to them. As wonderful as hospice could be for them, as much as it could extend their life and buoy their quality of life and well-being, they can’t bring themselves to admit that they have six months or less to live. That they are really going to die.

但有些人不會搬到臨終關懷機構——他們不會佔用他們可用的位置。儘管臨終關懷對他們來說可能很美好，儘管它可以延長他們的生命並提高他們的生活品質和幸福感，但他們不能讓自己承認他們還有六個月或更短的壽命。他們真的會死。

What a cruel paradox: you can have a shot at more time, but to get it, you have to face and accept your imminent death. For a lot of us, it’s just too hard.

多麼殘酷的悖論：你可以在更多的時候有機會，但要得到它，你必須面對並接受你即將到來的死亡。對我們很多人來說，這太難了。

The earlier you enter hospice, the more it can extend your life and improve your quality of life. But in a 2012 survey, more than half of the people who finally chose hospice had only twelve days or less to live by the time they entered. Many only had a few days. Claire Haser talked about this in one of our many phone chats. “I was good friends with a hospice bereavement counselor,” she told me. “She said, ‘Claire, most people won’t go there. Even if they’re on their deathbed, they won’t go there. They won’t even accept hospice until they’re so sick that they have days to live.’”

您越早進入臨終關懷，它就越能延長您的壽命並提高您的生活品質。但在 2012 年的一項調查中，最終選擇臨終關懷的人中，超過一半的人在進入時只剩下 12 天或更短的壽命。許多人只有幾天的時間。Claire Haser 在我們眾多電話聊天中的一次談到了這一點。“我和一位臨終關懷喪親顧問是好朋友，”她告訴我。“她說，'克萊爾，大多數人不會去那裡。即使他們臨終前，他們也不會去那裡。他們甚至不會接受臨終關懷，直到他們病得很重，只剩下幾天的生命。

We have a lot of work to do, in both medicine and as a larger culture, when it comes to talking about death and understanding what it can tell us about life.

在醫學和更廣泛的文化中，我們有很多工作要做，當涉及到談論死亡和理解它可以告訴我們關於生命的資訊時。

In 2004, Bernard Crettaz, a Swiss sociologist, hosted an informal gathering at a restaurant in his home city of Neuchâtel. He had recently lost his wife of many years and was horrified by what he saw as a “tyrannical secrecy” surrounding death in Western culture. His idea for the gathering was that it would be a kind of open salon at a public location, such as a restaurant or café, and anyone who wanted to could come. There would be no set agenda or specific topic. People could just come and talk about death—if they had lost a loved one, or were facing death themselves, or if they simply wanted to explore the concept before they found themselves in one of those positions.

2004年，瑞士社會學家伯納德·克雷塔茲 （Bernard Crettaz） 在他的家鄉納沙泰爾的一家餐廳舉辦了一次非正式聚會。他最近失去了相伴多年的妻子，他對西方文化中圍繞死亡的“專制秘密”感到震驚。他對這次聚會的想法是，這將是在公共場所（如餐廳或咖啡館）舉辦一種開放式沙龍，任何想來的人都可以來。不會有固定的議程或具體主題。人們可以來談論死亡——如果他們失去了親人，或者自己也面臨著死亡，或者他們只是想在發現自己處於這些位置之前探索這個概念。

“I am never so in tune with the truth as during one of these soirees,” Crettaz writes in his book on the death café movement that he founded. “And I have the impression that the assembled company, for a moment, and thanks to death, is born into authenticity.”²

“我從來沒有像在這些晚會上那樣與真相保持一致，”克雷塔茲在他創立的死亡咖啡館運動的書中寫道。“我的印象是，在某一刻，多虧了死亡，這個聚集在一起的公司誕生於真實。”²

No matter where you are in the arc of your life, facing death is an essential part of figuring out who you are and what you want to do with your time on this earth. And of course, those who experienced spontaneous healings aren’t immune to having to grapple with mortality.

無論你處於人生弧線的哪個階段，面對死亡都是弄清楚你是誰以及你想如何利用你在這個地球上的時間的重要組成部分。當然，那些經歷過自發治癒的人也不能倖免於不得不與死亡作鬥爭。

EVERY STORY HAS AN ENDING

每個故事都有一個結局

It’s easy to forget that spontaneous remission doesn’t mean cured forever. In medicine, a spontaneous remission refers to any unexpected cure or improvement from a disease that usually progresses. When a progressive or incurable disease goes backward instead of forward; when an individual performs far outside the mean, becomes an outlier, becomes exceptional, then we are looking at a spontaneous remission.

人們很容易忘記，自發緩解並不意味著永遠治癒。在醫學上，自發緩解是指通常進展的疾病的任何意外治癒或改善。當進行性或無法治癒的疾病倒退而不是前進時;當一個人的表現遠遠超出平均值，成為異類，變得異常時，那麼我們正在尋找自發的緩解。

Remember Mr. Wright? His strange yo-yo remissions, fueled by his belief in the Krebiozen he was taking, followed by the relapses he experienced when his faith in the drug was shaken, still qualify as spontaneous remissions. Even though Wright eventually died from his disease, he’s still a stunning example of spontaneous remission, one that serves as a powerful reminder of what’s possible. He’s also an example of the power of hope (and of hopelessness), one that we are still looking at and unpacking, trying to learn from it. I also believe that Janet Rose’s recovery from end-stage lupus qualifies as a spontaneous remission, even though she still sometimes feels the effects of the lupus on her heart. She interprets it as a message from her body to slow down, reduce stress, and prioritize health. She came back from the brink of death, improbably, has healed beyond what any doctor thought was possible, and has learned to use signs of relapse as a tool for keeping herself healthy.

還記得賴特先生嗎？他奇怪的溜溜球緩解，由他對正在服用的 Krebiozen 的信念推動，隨後他對藥物的信仰動搖時經歷的復發，仍然符合自發緩解的條件。儘管 Wright 最終死於疾病，但他仍然是自發緩解的驚人例子，有力地提醒我們什麼是可能的。他也是希望（和絕望）力量的一個例子，我們仍在觀察和解開，試圖從中學習。我還相信 Janet Rose 從終末期狼瘡中恢復過來可以說是自發緩解，儘管她有時仍然會感覺到狼瘡對心臟的影響。她將其解釋為來自她身體的資訊，要求放慢速度、減輕壓力並優先考慮健康。她從死亡的邊緣回來，不太可能，她的治癒程度超出了任何醫生的想像，並且已經學會了利用復發的跡象作為保持健康的工具。

If we’re chasing a cure that lasts forever, we’re looking for something that doesn’t exist. For as long as humans have been around, we’ve chased immortality like a mirage. Myths and storybooks are full of tales of people who set off looking for it: the Spanish conquistadors hunting for a fountain of youth; the emperor of ancient China who sent fleets of boats onto the sea to hunt down the “elixir of life”; the story of Gilgamesh, the warrior king of Mesopotamia, who saw his friend die in battle and became aware, for the first time, of his own mortality and tried to figure out how to cheat death. Even today, people have themselves cryogenically frozen, hoping they will be woken up in a future where technology has progressed to the point that they can be revived and healed.

如果我們在追求一種永遠持續的方法，我們就在尋找不存在的東西。自從人類存在以來，我們就一直像海市蜃樓一樣追逐不朽。神話和故事書中充滿了人們開始尋找它的故事：西班牙征服者尋找青春之泉;中國古代的皇帝派遣船隊出海追捕「長生不老藥」;美索不達米亞的勇士國王吉爾伽美什的故事，他看到他的朋友在戰鬥中死去，第一次意識到自己的死亡，並試圖弄清楚如何欺騙死亡。即使在今天，人們自己也被低溫凍結，希望他們能在未來被喚醒，在這個未來，技術已經發展到可以復活和治癒的地步。

But quests for immortality never seem to work out. That emperor from China, for example—he took mercury pills under the advice of doctors who claimed they would extend his life. But he took too many and killed himself. And literature is full of stories of characters who achieved immortality, only to want the opposite: a life that comes to an end at some point is a life that has meaning. Quests for immortality always seem to end the same way: the searchers never find what they’re looking for, though they waste much of their precious lives trying.

但對不朽的追求似乎從來沒有成功過。例如，那位來自中國的皇帝——他在醫生的建議下服用了水銀丸，醫生聲稱這些藥丸可以延長他的壽命。但他吃了太多，然後自殺了。文學作品中充滿了實現不朽的人物的故事，卻想要相反的東西：在某個時刻結束的生命是有意義的生命。追求不朽的結局似乎總是一樣的：搜索者永遠找不到他們正在尋找的東西，儘管他們浪費了大部分寶貴的生命來嘗試。

Had I been on my own quest for immortality? All these years, I’d been running around, researching, flying here and there, scouring long emails for the signs of a true spontaneous remission. How many hours, days, weeks had I spent filling up notebooks while people spoke? Perhaps there was a part of me that wanted there to be a way to cheat death. If I unlocked the secret of spontaneous healing, I could use it for myself if I were to get sick—a kind of GET OUT OF JAIL FREE card I could keep at the ready if death came calling in the form of an incurable disease. Was this all just another search for the elixir of life?

我自己是否一直在追求不朽？這些年來，我一直在四處奔波、研究、飛來飛去，在長長的電子郵件中尋找真正自發緩解的跡象。我花了多少小時、幾天、幾周的時間在人們說話時填滿筆記本？也許我有一部分想要有一種方法來欺騙死亡。如果我解開了自發治癒的秘密，如果我生病了，我就可以把它用在自己身上——一種 GET OUT OF JAIL FREE 卡，如果死亡以不治之症的形式來襲，我可以隨時準備。這一切只是對長生不老藥的又一次尋找嗎？

One of the amazing lessons that has come out of doing this work for so long—about seventeen years at this point—is that I’ve been able to see how the stories of the people I encountered along the way have progressed. Patricia Kaine, for example, still shows no signs of fibrosis. As a way of expressing gratitude for how the illness changed her relationship with herself, she has focused her medical work on those in need. She sends out a weekly newsletter called Doc’s Daily Chuckle, filled with jokes, stories, and quotes meant to make people laugh and feel uplifted. She believes that laughter is medicine, that gratitude can heal, that being of service to her community gives her purpose in life and something to live for, and that this helps her stave off disease. I subscribed to her newsletter, and it does make me laugh. Here’s a joke from a recent one:

從事這項工作這麼長時間（此時大約有17年）得出的一個令人驚奇的教訓是，我能夠看到我一路上遇到的人的故事是如何發展的。例如，派翠夏·凱恩 （Patricia Kaine） 仍然沒有表現出纖維化的跡象。為了表達對疾病如何改變她與自己關係的感激之情，她將醫療工作重點放在有需要的人身上。她每周都會發送一份名為 Doc's Daily Chuckle 的時事通訊，其中充滿了笑話、故事和名言，旨在讓人們開懷大笑並感到振奮。她相信笑是良藥，感恩可以治癒，為社區服務賦予了她的人生目標和生活的目標，這有助於她遠離疾病。我訂閱了她的時事通訊，這確實讓我發笑。這是最近一個笑話：

Mickey sat in the doctor’s office and kept up a strange litany.

“I hope I’m sick. I hope I’m sick.”

Another waiting patient asked, “Why do you want to be sick?”

Mickey answered, “I’d hate to be well and feel like this!”

米奇坐在醫生辦公室里，繼續說著奇怪的一連串。“我希望我生病了。我希望我生病了。“另一位等待的病人問道：”你為什麼想生病？米奇回答說：「我討厭身體健康，有這種感覺！

Pablo Kelly and Matt Ireland, the young men stricken with the incurable brain cancer glioblastoma multiforme, were still in remission as of this writing, raising their young children, hoping for more years of health and grace, all the while knowing that it might not last forever. These weren’t shallow quests for immortality, I realized, and neither was mine.

巴勃羅·凱利 （Pablo Kelly） 和馬特·愛爾蘭 （Matt Ireland） 是患有無法治癒的多形性腦癌膠質母細胞瘤的年輕人，在撰寫本文時仍處於緩解期，撫養著年幼的孩子，希望能有更多的健康和優雅，同時知道它可能不會永遠持續下去。我意識到，這些並不是膚淺的永生追求，我的也不是。

It’s humbling to hear all these stories, shared with me so generously by the people I spoke to—humbling in the same way that car accident all those years ago was humbling. You realize that you can do everything “right” and still get sick. Or you can make apparent “mistakes” like we all do and still end up with a remission. And like some of the people I spoke to for this book, you can even experience spontaneous remission and then struggle again with illness later on. There is so much we don’t know yet, so much we don’t control. On the other side of healing, there is life. But along with life comes its shadow, ever present—that someday, it will come to a close.

聽到所有這些故事，與我交談的人如此慷慨地與我分享，我感到很謙卑——就像多年前的車禍一樣令人謙卑。你意識到你可以做所有 「正確 」的事情，但仍然會生病。或者你可以像我們一樣犯明顯的 「錯誤」，但最終仍然會得到緩解。就像我為這本書採訪的一些人一樣，你甚至可以經歷自發的緩解，然後在以後再次與疾病作鬥爭。有太多我們還不知道，太多我們無法控制。在治癒的另一邊，有生命。但隨著生命而來的是它的影子，它永遠存在——總有一天，它會結束。

Every story has an ending. Claire Haser, whose story introduced this book, retired to Hawaii as she’d always wanted. She and her husband bought a house near Honolulu. Their daughter and son-in-law moved onto the property as well. They were musicians who booked gigs all over the city; in the evenings, when Claire and her husband settled out on the lanai, the sound of their rehearsals floated up from below.

每個故事都有一個結局。Claire Haser 的故事介紹了這本書，她按照她一直希望的那樣退休到夏威夷。她和丈夫在檀香山附近買了一棟房子。他們的女兒和女婿也搬到了這處房產。他們是在整個城市預訂演出的音樂家;晚上，當 Claire 和她的丈夫在陽臺上安頓下來時，他們排練的聲音從下面飄來。

Claire had ten healthy, happy years in Hawaii with her family after the terminal cancer diagnosis that should have ended her life. And then, in early 2018, one of her regular scans found a lesion on her lung. It looked suspiciously like a cancer metastasis.

克雷爾在被診斷出患有晚期癌症后，與家人在夏威夷度過了十年健康、快樂的時光，這本應結束她的生命。然後，在 2018 年初，她的一次定期掃描發現了她的肺部病變。它看起來可疑地像癌症轉移。

It was small and static—not growing—which confused her doctors. A metastasis, especially if it was somehow related to her original pancreatic cancer, would be odd after all these years and wouldn’t really behave this way. But when they biopsied it, it turned out indeed to be adenocarcinoma—from the pancreas.

它很小而且靜止不動——沒有增長——這讓她的醫生感到困惑。轉移，特別是如果它與她最初的胰腺癌有某種關係，這麼多年過去了，這很奇怪，而且不會真的以這種方式表現。但當他們進行活檢時，結果發現確實是腺癌——來自胰腺。

It was bad news, and strange news. After a ten-year reprieve—not a trace of disease—the cancer had returned. But when Claire wrote to tell me, she also said this: The silver lining for me is that my new doctors do truly believe I had pancreatic cancer now. My oncologist, my surgeon, and doctor all scoffed at my diagnosis—they said I was misdiagnosed, that I read the pathology report wrong, that I’d had something else, not pancreatic cancer—all this was said to me. This time, when the surgeon read me the pathology report—that I had pancreatic cancer mets on my lungs—I felt such huge relief that I would at last be believed and not dismissed. Being dismissed by doctors is a bitter pill to swallow. I’ve sometimes felt like the doctors were my enemies as much as the cancer.

這是個壞消息，也是個奇怪的消息。經過十年的緩刑——沒有一絲疾病的痕跡——癌症又回來了。但當 Claire 寫信告訴我時，她還說了這樣一句話：對我來說，一線希望是我的新醫生真的相信我現在患有胰腺癌。我的腫瘤科醫生、外科醫生和醫生都對我的診斷嗤之以鼻——他們說我被誤診了，我看錯了病理報告，我得了別的病，不是胰腺癌——所有這些都是對我說的。這一次，當外科醫生給我讀病理報告時——我的肺部患有胰腺癌——我感到如釋重負，我終於被相信了，而不是被忽視。被醫生解僱是一顆難以下咽的苦藥。我有時覺得醫生和癌症一樣是我的敵人。

It should come as no surprise that Claire has decided against aggressive treatment. She’s seventy-three now, and another scan is pending. She thinks she may be headed toward the end of her life, but as she says, “I’ve been here before.” Once again, she’s decided that given her diagnosis, prognosis, and treatment options, she doesn’t want to spend her remaining time in treatments that will make her feel worse in the hopes of tacking on a few more months. This is an individual, incredibly personal decision that everyone needs to make for themselves based on their specific circumstances, illness, and treatment options. But for Claire, more time isn’t worth much to her if it’s full of chemo side effects, hours spent lying on a radiation table, the fluorescent lights of a doctor’s office waiting room.

Claire 決定不進行積極治療也就不足為奇了。她現在 73 歲了，另一次掃描正在等待中。她認為自己可能正走向生命的盡頭，但正如她所說，“我以前來過這裡。再一次，她決定，鑒於她的診斷、預後和治療方案，她不想將剩餘的時間花在會讓她感覺更糟的治療上，以期再多活幾個月。這是一個個人的、令人難以置信的個人決定，每個人都需要根據自己的具體情況、疾病和治療方案為自己做出。但對 Claire 來說，如果充滿了化療副作用、躺在放射床上花費的時間、醫生辦公室候診室的螢光燈，那麼更多的時間對她來說就沒有多大價值。

“I’m sure that’s the right decision for someone else,” she says. “It’s not for me.”

“我確信這對其他人來說是正確的決定，”她說。“這不適合我。”

She went through a bad patch recently where she felt sick and depleted. The fatigue really got to her. And a surgery on her lungs that was supposed to help get a more accurate diagnosis made her feel worse. But now, she says, she’s feeling okay. As always, it’s trial and error. She tried a medication that was supposed to help her breathing, and when it didn’t, she went off it and felt better. Some days are hard, and some days are easy, graceful. She still has stage IV cancer. It’s not easy, facing death. She writes to me that she’s seeing a therapist “to get my mind around it.” She’s gone back to the same book she used ten years ago, A Year to Live. She calls it “her Bible.”

她最近經歷了一段糟糕的時期，她感到生病和筋疲力盡。疲勞真的讓她感到疲憊。而本應有助於獲得更準確診斷的肺部手術讓她感覺更糟。但現在，她說，她感覺還好。與往常一樣，這是反覆試驗。她嘗試了一種本應有助於她呼吸的藥物，當它沒有説明時，她就停葯了，感覺好多了。有些日子很辛苦，有些日子是輕鬆、優雅的。她仍然患有IV期癌症。面對死亡並不容易。她寫信給我說，她正在看治療師，“讓我明白這件事”。她又回到了十年前用過的那本書《A Year to Live》。她稱之為 「她的聖經」。

“It’s not the dying part that’s the stumbling block,” she tells me with a wry laugh. “It’s the getting there.”

“絆腳石不是垂死的部分，”她苦笑著告訴我。“這是到達那裡。”

For a long time after the accident that took Jane, I wondered if I was properly reckoning with death—hers and my own. I think perhaps I had the wrong idea about what facing death really means. It doesn’t need to be terrible. It doesn’t have to be morbid or depressing. There is no one way to come to terms with your own mortality. But what I do know is that after that accident, I became interested in authenticity for the first time in my life. Just as Mirae said, when she realized that she’d misunderstood who she was and what her life was meant to be, it felt like “a veil had been ripped away.” I saw myself, and my future, very differently. I no longer felt compelled to live my life on anyone else’s terms but my own.

在那場事故奪走 Jane 之後的很長一段時間里，我都在想我是否正確地考慮了死亡——她的和我自己的。我想也許我對面對死亡的真正含義有錯誤的想法。它不需要很糟糕。它不一定是病態或令人沮喪的。沒有一種方法可以接受自己的死亡。但我所知道的是，在那次事故之後，我有生以來第一次對真實性產生了興趣。正如Mirae所說，當她意識到自己誤解了自己是誰以及她的生活應該是什麼時，感覺就像“面紗被撕掉了”。我看待自己和我的未來，都非常不同。我不再覺得必須按照別人的方式生活，只按照我自己的方式生活。

Facing death doesn’t mean you succumb to death. You can accept your own eventual mortality and still fight to live. You can face death and still choose life.

面對死亡並不意味著你屈服於死亡。你可以接受自己最終的死亡，但仍然為活著而戰。你可以面對死亡，但仍然選擇生命。

CHOOSING LIFE

選擇生命

After her diagnosis of incurable metastatic melanoma, Mirae Bunnell had plenty of dark nights of the soul. She wrestled with what to do, how to proceed. There was a part of her that didn’t want to fight it. The doctors said she would die, so that’s what she figured would happen.

在被診斷出患有無法治癒的轉移性黑色素瘤后，Mirae Bunnell 度過了許多靈魂的黑夜。她糾結於該怎麼做，如何進行。她有一部分不想與之抗爭。醫生說她會死，所以她認為會這樣。

“I sat at the kitchen table with my boyfriend, and I remember saying to him, I remember this exactly, I said, ‘I feel like I have a choice. I know it’s up to me and that it will be really hard work. I’m not sure I want to do it,’” Mirae says. “He was very hurt by that.”

“我和男朋友坐在廚房的桌子旁，我記得對他說，我記得很清楚，我說，'我覺得我有選擇。我知道這取決於我，這將是非常艱苦的工作。我不確定我是否想這樣做，'“Mirae 說。“他為此感到非常受傷。”

Mirae says now that there was something attractive about giving in to it. About accepting the fact that she was going to die in a few months and then “going gently into that good night.” Her boyfriend was upset by what she said because “he didn’t experience it,” she says now. “He didn’t know. But for anyone who gets close enough to touch it—death—it feels like home.”

Mirae 現在說，屈服是有吸引力的。關於接受她將在幾個月後去世的事實，然後「溫柔地進入那個美好的夜晚」。。她的男朋友對她說的話感到不安，因為“他沒有經歷過，”她現在說。“他不知道。但對於任何靠近到觸摸它的人來說——死亡——它就像家一樣。

Over the course of the next two nights, she sat up into the wee hours, acutely aware of her own mortality. Finally, she made her decision. She wasn’t afraid of death anymore, but she chose life.

在接下來的兩個晚上，她一直坐到淩晨，敏銳地意識到自己的死亡。最後，她做出了決定。她不再害怕死亡，而是選擇了生活。

Pablo Kelly, who lives in a state of inexplicable remission that baffles his doctors, also lives with the reality that his glioblastoma multiforme could return at any time. It might stay away forever. Or it might be back tomorrow.

巴勃羅·凱利 （Pablo Kelly） 生活在一種莫名其妙的緩解狀態中，這讓他的醫生感到困惑，他也生活在他的多形性膠質母細胞瘤可能隨時復發的現實中。它可能會永遠遠離。或者它可能明天回來。

“I don’t think about dying as a problem anymore,” he tells me on a muffled, crackling phone call from the UK. “I was supposed to be dead ages ago.”

“我不再把死亡當作一個問題，”他在一通來自英國的電話中告訴我。“我本來應該在很久以前就死了。”

The way that Pablo has chosen life is evident in the way he lives now. He decided early on not to undergo the standard treatment for glioblastoma multiforme because of the side effects—the major one being infertility. Pablo had always thought about having children someday. But the choice presented by his doctors crystallized the answer to the question that hadn’t even been asked yet. The treatment that might save his life would also render him unable to have children. It didn’t take him long to decide to decline.

Pablo 選擇生活的方式在他現在的生活方式中顯而易見。他很早就決定不接受多形性膠質母細胞瘤的標準治療，因為副作用——主要的副作用是不孕症。巴勃羅一直想著有一天能生孩子。但他的醫生提出的選擇明確了這個甚至還沒有被問到的問題的答案。可能挽救他生命的治療也會使他無法生育。沒過多久，他就決定拒絕。

“If I was going to live, I wanted to have a life, and I wanted to have kids,” he says. “If I couldn’t do those things, then what’s the point?”

“如果我要活著，我想過一種生活，我想生孩子，”他說。“如果我不能做這些事情，那有什麼意義呢？”

Pablo is still in remission. He still eats the strict diet that he believes has kept him in remission. It can be difficult, when everyone else around you, your whole community, operates on a different set of rules. He tries to make the conscious choice every day not to focus on fear. He eats the way he does not because he’s afraid of death but because he wants to live.

Pablo 仍處於緩解期。他仍然堅持嚴格的飲食習慣，他認為這種飲食使他處於緩解狀態。當你周圍的其他人，你的整個社區，都按照一套不同的規則運作時，這可能會很困難。他每天都試圖有意識地選擇不專注於恐懼。他以這種方式吃東西不是因為他害怕死亡，而是因為他想活下去。

His daughter was born in June, healthy and perfect.

他的女兒於 6 月出生，健康完美。

“I cried my eyes out,” he said on the day he wrote to tell me he’d become a father.

“我哭出了眼睛，”他在寫信告訴我他已經成為父親的那天說。

Thinking about Pablo, something that Bernard Crettaz, the founder of the death café movement, once said surfaced in my mind. In a last interview, he revealed that he was ceasing to host any further death cafés—up to that point, he had hosted them religiously for over a decade. When the interviewer asked why, he said that it was painful to stop, a huge loss. But after hearing so many others wrestle with death, he’d decided that it was time to think about his own. After internalizing a lot of messages about death and sin from religion when he was a kid, he needed to heal death for himself. The death café movement, he said, was inspired by that—a reaction to the negative connotations he’d learned as a kid. When he founded the movement, he said, “I went back to the Greeks, and the Greeks said, ‘Live each moment of your life as if it were your last,’ and that’s it. Be the maximum of your being.”³

想到巴勃羅，死亡咖啡館運動的創始人伯納德·克雷塔茲 （Bernard Crettaz） 曾經說過的一句話在我腦海中浮現。在最後一次採訪中，他透露他將停止舉辦任何進一步的死亡咖啡館——到那時為止，他已經虔誠地接待了十多年。當採訪者問為什麼時，他說停下來很痛苦，是巨大的損失。但在聽到這麼多人與死亡搏鬥之後，他決定是時候考慮一下自己的了。在他小時候從宗教中內化了很多關於死亡和罪惡的資訊后，他需要為自己治癒死亡。他說，死亡咖啡館運動的靈感來自此——這是對他小時候學到的負面含義的反應。當他發起這項運動時，他說：「我回到希臘人那裡，希臘人說，『把你生命的每一刻都當作你的最後一刻來過』，就是這樣。做你最大的存在。³

Be the maximum of your being. How many of us could say that we were really doing that?

成為你存在的最大值。我們中有多少人能說我們真的在這樣做？

Crettaz died, at the age of eighty, two years after he gave that interview, after he stepped down from the death café movement to attend to his own life and death. Before the interview concluded, he told the journalist that it didn’t matter to him how, or when, or where he died. “It doesn’t matter,” he said. “If you put all the intensity of yourself in this moment, then you live.”

克雷塔茲在接受那次採訪兩年後去世，享年 80 歲，當時他退出了死亡咖啡館運動，開始關注自己的生與死。在採訪結束之前，他告訴記者，他是如何、何時或在哪裡死亡的，對他來說並不重要。“沒關係，”他說。“如果你把自己所有的強度都放在這一刻，那麼你就會活下來。”

There is a level of intensity, of dedication, among those who spontaneously healed, that is unparalleled. The comparisons to great athletes are apt; these are the high achievers, the ones who do what we’ve all decided is physically impossible. People who break physical records are people who dedicate themselves completely to their training, pushing themselves as far as they can go—and then farther. In some way, were survivors of incurable diseases doing the same?

那些自發治癒的人有一種程度的強度和奉獻精神，這是無與倫比的。與偉大運動員的比較是恰當的;這些人是高成就者，他們做了我們都認為在物理上不可能的事情。打破身體記錄的人是那些全身心投入訓練的人，他們把自己推得更遠，然後走得更遠。在某種程度上，不治之症的倖存者也在做同樣的事情嗎？