演講MP3+雙語文稿:幾乎死亡教會(huì)了我什么是生活

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【演講者及介紹】Suleika Jaouad

作家、教師、活動(dòng)家蘇萊卡?賈瓦德(Suleika Jaouad)正在改變?nèi)藗儗?duì)于疾病的看法。

【演講主題】幾乎死亡教會(huì)了我什么是生活

【中英文字幕】

翻譯者Ziyao Wang 校對(duì)者Jin Ge

00:00

It was the spring of 2011, and as they liketo say in commencement speeches, I was getting ready to enter the real world. Ihad recently graduated from college and moved to Paris to start my first job.My dream was to become a war correspondent, but the real world that I foundtook me into a really different kind of conflict zone.

201年春天，就像大學(xué)畢業(yè)典禮演講里說的那樣，我做好了面對(duì)現(xiàn)實(shí)世界的準(zhǔn)備。我剛剛大學(xué)畢業(yè)，搬到了巴黎，開始了我第一份工作。我的夢(mèng)想是成為一名戰(zhàn)地記者，但現(xiàn)實(shí)世界把我?guī)У搅艘粋€(gè)很不一樣的矛盾世界。

00:28

At 22 years old, I was diagnosed withleukemia. The doctors told me and my parents, point-blank, that I had about a35 percent chance of long-term survival. I couldn't wrap my head around whatthat prognosis meant. But I understood that the reality and the life I'dimagined for myself had shattered. Overnight, I lost my job, my apartment, myindependence, and I became patient number 5624.

22歲時(shí)，我被診斷出了白血病。醫(yī)生坦白地告訴我和我的父母，我有百分之三十五的幾率可以活下去。我不能理解和接受那診斷書意味著什么。但我明白我想象中的世界已經(jīng)被動(dòng)搖。一夜之間，我失去了工作，房子，自由，我變成了病號(hào)5624。

01:06

Over the next four years of chemo, aclinical trial and a bone marrow transplant, the hospital became my home, mybed, the place I lived 24/7. Since it was unlikely that I'd ever get better, Ihad to accept my new reality. And I adapted. I became fluent in medicalese,made friends with a group of other young cancer patients, built a vastcollection of neon wigs and learned to use my rolling IV pole as a skateboard.I even achieved my dream of becoming a war correspondent, although not in theway I'd expected. It started with a blog, reporting from the front lines of myhospital bed, and it morphed into a column I wrote for the New York Times,called "Life, Interrupted."

在接下來4年里，我接受了臨床化療，做了骨髓移植，醫(yī)院變成了我家，還有我的床，我一直呆著的地方。自從覺得我的病再也不會(huì)好了，我接受了這個(gè)現(xiàn)實(shí)。我習(xí)慣了，我流利地說著醫(yī)學(xué)名詞，其他年輕的癌癥病人成了我的朋友，我收集五顏六色的假發(fā)，把移動(dòng)點(diǎn)滴架當(dāng)成滑板。我甚至改變了成為戰(zhàn)地記者的夢(mèng)想，這其實(shí)出乎我的意料。這是從一篇博客開始的，從我病床記錄第一頁開始，它慢慢變成了紐約時(shí)報(bào)的一個(gè)專欄，叫做“生命·摧毀”。

02:04

But -- (Applause)

但是 --（掌聲）

02:05

Thank you.

謝謝。

02:07

(Applause)

（掌聲）

02:09

But above all else, my focus was onsurviving. And -- spoiler alert --

關(guān)鍵是，我的關(guān)注點(diǎn)是活下去。并且 -- 我要?jiǎng)⊥噶斯?--

02:18

(Laughter)

（笑聲）

02:20

I did survive, yeah.

我活了下來。

02:22

(Applause)

（掌聲）

02:27

Thanks to an army of supportive humans, I'mnot just still here, I am cured of my cancer.

感謝那些支持過我的人們，我不僅僅還活著，而且治好了癌癥。

02:34

(Applause)

（掌聲）

02:36

Thank you.

謝謝。

02:37

(Applause)

（掌聲）

02:39

So, when you go through a traumaticexperience like this, people treat you differently. They start telling you howmuch of an inspiration you are. They say you're a warrior. They call you ahero, someone who's lived the mythical hero's journey, who's endured impossibletrials and, against the odds, lived to tell the tale, returning better andbraver for what you're been through. And this definitely lines up with myexperience.

所以當(dāng)我們有過這種痛苦的經(jīng)歷后，別人會(huì)對(duì)你另眼相看。他們會(huì)告訴你你的故事多么鼓舞人心。他們說你是一個(gè)戰(zhàn)士。他們叫你英雄，就好像你踏上了一段神秘的危險(xiǎn)旅程，經(jīng)歷了各種考驗(yàn)?？朔щy重重凱旋歸來，開始講述關(guān)于自己的傳說，并且因?yàn)樗娝勛兊酶鼌柡Α⒂赂?。這跟我的經(jīng)歷確實(shí)有點(diǎn)類似。

03:12

Cancer totally transformed my life. I leftthe hospital knowing exactly who I was and what I wanted to do in the world.And now, every day as the sun rises, I drink a big glass of celery juice, and Ifollow this up with 90 minutes of yoga. Then, I write down 50 things I'mgrateful for onto a scroll of paper that I fold into an origami crane and sendsailing out my window.

癌癥改變了我的生活。我離開醫(yī)院，清楚地認(rèn)識(shí)自己，知道我想做什么?，F(xiàn)在，每天日出時(shí)，我會(huì)喝一大杯芹菜汁，然后做一個(gè)半小時(shí)瑜伽。然后，我會(huì)在一張紙上寫下讓我感激的50件事，折成一只紙鶴并讓它從窗戶飛出去。

03:39

(Laughter)

（笑聲）

03:41

Are you seriously believing any of this?

你們相信嗎？

03:44

(Laughter)

（笑聲）

03:46

I don't do any of these things.

我根本不會(huì)做上述的任何事。

03:48

(Laughter)

（笑聲）

03:49

I hate yoga, and I have no idea how to foldan origami crane. The truth is that for me, the hardest part of my cancerexperience began once the cancer was gone. That heroic journey of the survivorwe see in movies and watch play out on Instagram -- it's a myth. It isn't justuntrue, it's dangerous, because it erases the very real challenges of recovery.

我討厭瑜伽，也不會(huì)折紙鶴。實(shí)際上，我的癌癥經(jīng)歷中最難的是癌癥被治好后的時(shí)光。我們?cè)陔娪昂?Instagram上看到那些幸存者們的英雄故事 -- 他們都是個(gè)謎。這些描述不僅不現(xiàn)實(shí)，而且很危險(xiǎn)。因?yàn)樗麄冄陲椓丝祻?fù)過程中真實(shí)的挑戰(zhàn)。

04:17

Now, don't get me wrong -- I am incrediblygrateful to be alive, and I am painfully aware that this struggle is aprivilege that many don't get to experience. But it's important that I tell youwhat this projection of heroism and expectation of constant gratitude does topeople who are trying to recover. Because being cured is not where the work ofhealing ends. It's where it begins.

不要誤會(huì) -- 我非常感激有活下來的機(jī)會(huì)，我痛苦地意識(shí)到與病魔抗?fàn)幨?一種大多數(shù)人都 沒有的幸運(yùn)。但我想告訴你們的是，這種英雄主義的映射和 對(duì)持續(xù)感激的期待 對(duì)努力康復(fù)的病人來說，意味著什么。因?yàn)楸恢委熀?不意味著康復(fù)結(jié)束，而意味著開始。

04:47

I'll never forget the day I was dischargedfrom the hospital, finally done with treatment. Those four years of chemo hadtaken a toll on my relationship with my longtime boyfriend, and he'd recentlymoved out. And when I walked into my apartment, it was quiet. Eerily so. Theperson I wanted to call in this moment, the person who I knew would understandeverything, was my friend Melissa. She was a fellow cancer patient, but she haddied three weeks earlier. As I stood there in the doorway of my apartment, Iwanted to cry. But I was too tired to cry. The adrenaline was gone. I had feltas if the inner scaffolding that had held me together since my diagnosis hadsuddenly crumbled. I had spent the past 1,500 days working tirelessly toachieve one goal: to survive. And now that I'd done so, I realized I hadabsolutely no idea how to live.

我永遠(yuǎn)都不會(huì)忘記出院那天，結(jié)束治療時(shí)的感覺。4年的化療淡化了我和男友的感情，他最近搬出去了。當(dāng)我走進(jìn)家門時(shí)，里面是寂靜的。這只是個(gè)開始。此時(shí)我最想打電話的人，她會(huì)明白我說的一切，是我的朋友梅麗莎。她是一位病友，但她三周前去世了。我站在我家的門廊里，我想哭。但我累得哭不出來。腎上腺素作用褪去，我感覺心中那個(gè)從我被確診第一天支撐我的支架，忽然坍塌。在過去1500天里，我只為一個(gè)目標(biāo)努力：活下去?，F(xiàn)在目標(biāo)實(shí)現(xiàn)了，我意識(shí)到我不知道怎么繼續(xù)活下去。

06:01

On paper, of course, I was better: I didn'thave leukemia, my blood counts were back to normal, and the disability checkssoon stopped coming. To the outside world, I clearly didn't belong in thekingdom of the sick anymore. But in reality, I never felt further from beingwell. All that chemo had taken a permanent physical toll on my body. Iwondered, "What kind of job can I hold when I need to nap for four hoursin the middle of the day? When my misfiring immune system still sends me to theER on a regular basis?" And then there were the invisible, psychologicalimprints my illness had left behind: the fears of relapse, the unprocessedgrief, the demons of PTSD that descended upon me for days, sometimes weeks.

紙面上看，我痊愈了：我不再患白血病。我的血樣檢查恢復(fù)正常，我不再有異樣檢查。對(duì)外人來說，我再也不屬于那個(gè)病號(hào)的世界了。但實(shí)際上，我從未感覺痊愈。我所接受的化療在我身上留下了永久的傷疤。我心想，“什么工作可以讓我在白天睡四個(gè)小時(shí)，當(dāng)我那不奏效的免疫系統(tǒng)讓我去定時(shí)接受化療時(shí)？“還有那無形的、 疾病留下的 心理印記： 對(duì)疾病復(fù)發(fā)的恐懼，毫無掩飾的悲傷，以及創(chuàng)傷后應(yīng)激障礙 每次對(duì)我長(zhǎng)達(dá)數(shù)天，有時(shí)數(shù)周的折磨。

06:58

See, we talk about reentry in the contextof war and incarceration. But we don't talk about it as much in the context ofother kinds of traumatic experiences, like an illness. Because no one hadwarned me of the challenges of reentry, I thought something must be wrong withme. I felt ashamed, and with great guilt, I kept reminding myself of how luckyI was to be alive at all, when so many people like my friend Melissa were not.But on most days, I woke up feeling so sad and lost, I could barely breathe.Sometimes, I even fantasized about getting sick again. And let me tell you,there are so many better things to fantasize about when you're in your twentiesand recently single.

當(dāng)我們講到戰(zhàn)爭(zhēng)和關(guān)押，我們總談到重新融入這個(gè)社會(huì)。但當(dāng)我們說到痛苦的經(jīng)歷，如疾病時(shí)，我們很少那么講。因?yàn)闆]有人曾警告過我重新融入這個(gè)社會(huì)的困難，所以我覺得是我的問題。我感到很慚愧，很有罪惡感，并不停提醒自己我能活下來已經(jīng)很幸運(yùn)了，許多像梅麗莎一樣的病友都沒能撐下來。但無數(shù)的日子里，我悲傷而失落地醒來，我?guī)缀鯚o法呼吸。有時(shí)我甚至幻想著又一次生病。我想告訴你們，在你二十多歲并單身時(shí)，有更好的事物可以幻想。

07:49

(Laughter)

（笑聲）

07:51

But I missed the hospital's ecosystem. Likeme, everyone in there was broken. But out here, among the living, I felt likean impostor, overwhelmed and unable to function. I also missed the sense ofclarity I'd felt at my sickest. Staring your mortality straight in the eye hasa way of simplifying things, of rerouting your focus to what really matters.And when I was sick, I vowed that if I survived, it had to be for something. Ithad to be to live a good life, an adventurous life, a meaningful one. But thequestion, once I was cured, became: How? I was 27 years old with no job, nopartner, no structure. And this time, I didn't have treatment protocols ordischarge instructions to help guide my way forward.

但我懷念在醫(yī)院的時(shí)環(huán)境。那里的每一個(gè)人都像我一樣脆弱，但在醫(yī)院外的健康人群中，我覺得自己像個(gè)冒名頂替者，不知所措，無法正常運(yùn)作。我也懷念我病情最嚴(yán)重時(shí)的清晰感。直視自己的死亡讓我簡(jiǎn)化一切其他事物，重新把注意力集中在真正重要的事情上。生病時(shí)，我發(fā)誓如果活下來了，我一定會(huì)為了一個(gè)目標(biāo)而活。這個(gè)目標(biāo)是好好活著，過上有冒險(xiǎn)精神，有意義的生活。但在我痊愈后，問題變成了：怎么做？我27歲，沒工作，沒伴侶，沒條理。這時(shí)，沒有任何治療協(xié)議或醫(yī)囑 指導(dǎo)我前進(jìn)。

08:46

But what I did have was an in-box full ofinternet messages from strangers. Over the years, people from all over theworld had read my column, and they'd responded with letters, comments andemails. It was a mix, as is often the case, for writers. I got a lot ofunsolicited advice about how to cure my cancer with things like essential oils.I got some questions about my bra size. But mostly --

不過我有滿滿一收件箱的信息，來自陌生人。多年來，全世界的人們讀到我的專欄，他們通過信件、評(píng)論和郵件回應(yīng)。那是個(gè)大雜燴，對(duì)作家來說應(yīng)該很常見。我得到了很多自發(fā)而不靠譜的建議，比如怎樣用精油治好我的癌癥。還有些人問我內(nèi)衣碼數(shù)。但是 --

09:22

(Laughter)

（笑聲）

09:23

mostly, I heard from people who, in theirown different way, understood what it was that I was going through.

總體來說，那些信息都來自從不同角度明白我正經(jīng)歷 什么樣的痛苦的人們。

09:31

I heard from a teenage girl in Florida who,like me, was coming out of chemo and wrote me a message composed largely ofemojis. I heard from a retired art history professor in Ohio named Howard,who'd spent most of his life struggling with a mysterious, debilitating healthcondition that he'd had from the time he was a young man. I heard from aninmate on death row in Texas by the name of Little GQ -- short for"Gangster Quinn." He'd never been sick a day in his life. He does1,000 push-ups to start off each morning. But he related to what I described inone column as my "incanceration," and to the experience of beingconfined to a tiny fluorescent room. "I know that our situations aredifferent," he wrote to me, "But the threat of death lurks in both ofour shadows." In those lonely first weeks and months of my recovery, thesestrangers and their words became lifelines, dispatches from people of so manydifferent backgrounds, with so many different experiences, all showing me thesame thing: you can be held hostage by the worst thing that's ever happened toyou and allow it to hijack your remaining days, or you can find a way forward.

我收到一封來自佛羅里達(dá)的信，那個(gè)小女孩也剛接受化療，她的信里有很多表情貼。我還收到住在俄亥俄州，退休藝術(shù)史教授霍華德的信，從他年輕時(shí)起，他一生都與一種罕見的，令人虛弱的疾病抗?fàn)?。還有一封德州的死囚的來信。他署名是小GQ -- 是“奎因匪徒”的簡(jiǎn)稱。他一生從沒真正病過。他每天早上做1000個(gè)俯臥撐。但他對(duì)我在一次專欄里所描述的 "癌癥關(guān)押“很有同感，特別是被困在一個(gè)沒什么亮光的小房間里。“我知道我們處境大不相同“，他寫道，“但死亡的威脅都潛伏在我們的影子中”。在剛開始恢復(fù)的那孤獨(dú)的幾個(gè)月里，這些陌生人的聲音成了我的生命線，從無數(shù)經(jīng)驗(yàn)、背景完全不同的人 手中發(fā)出，都說著的類似的話： 你可以被 你所遇到的 最壞的事困住，讓它劫持走 你余下的日子，但你也可以 找辦法前進(jìn)。

11:02

I knew I needed to make some kind ofchange. I wanted to be in motion again to figure out how to unstuck myself andto get back out into the world. And so I decided to go on a real journey -- notthe bullshit cancer one or the mythical hero's journey that everyone thought Ishould be on, but a real, pack-your-bags kind of journey. I put everything Iowned into storage, rented out my apartment, borrowed a car and talked a very adear but somewhat smelly friend into joining me.

我知道我需要改變。我想重新振作起來，找到走出困境的辦法，回到正常的世界。因此我決定踏上一次真正的旅程 -- 不是可惡的癌癥，也不是那種人們認(rèn)為我應(yīng)該經(jīng)歷的神秘英雄之旅，而是真正的、說走就走的旅行。我把我的東西放進(jìn)儲(chǔ)物間，外租了我的公寓，借了輛車，說服了一位可愛但臭烘烘的朋友 跟我一起出門。

11:44

(Laughter)

（笑聲）

11:47

Together, my dog Oscar and I embarked on a15,000-mile road trip around the United States. Along the way, we visited someof those strangers who'd written to me. I needed their advice, also to say tothem, thank you. I went to Ohio and stayed with Howard, the retired professor.When you've suffered a loss or a trauma, the impulse can be to guard yourheart. But Howard urged me to open myself up to uncertainty, to thepossibilities of new love, new loss. Howard will never be cured of illness. Andas a young man, he had no way of predicting how long he'd live. But that didn'tstop him from getting married. Howard has grandkids now, and takes weekly ballroomdancing lessons with his wife. When I visited them, they’d recently celebratedtheir 50th anniversary. In his letter to me, he'd written, "Meaning is notfound in the material realm; it's not in dinner, jazz, cocktails orconversation. Meaning is what's left when everything else is strippedaway."

我和我的狗奧斯卡，踏上了15000英里的環(huán)美公路旅行。路上，我們拜訪了那些寫信給我的陌生人。我需要他們的建議，并想向他們說謝謝。我去了俄亥俄州的退休教授霍華德家過夜。當(dāng)我們?cè)馐軗p失或不幸時(shí)，會(huì)有守衛(wèi)自己心靈的沖動(dòng)。但霍華德鼓勵(lì)著我擁抱未知，坦然接受新的愛與失?；羧A德的病從未被治好，年輕時(shí)，他無法預(yù)計(jì)自己還能活多久，但這沒有阻止他走進(jìn)婚姻的殿堂。他現(xiàn)在有幾個(gè)孫子了，每周還和妻子去上舞蹈課。我拜訪他們時(shí)，他們最近在慶祝結(jié)婚50周年。在給我的信里，他寫道，“意義不存在于物質(zhì)世界； 它不是晚餐，爵士樂，雞尾酒或談話。意義是所有東西都 被除去后剩下的一切“。

13:02

I went to Texas, and I visited Little GQ ondeath row. He asked me what I did to pass all that time I'd spent in a hospitalroom. When I told him that I got really, really good at Scrabble, he said,"Me, too!" and explained how, even though he spends most of his daysin solitary confinement, he and his neighboring prisoners make board games outof paper and call out their plays through their meal slots -- a testament tothe incredible tenacity of the human spirit and our ability to adapt withcreativity.

我去了德州，拜訪了死囚小GQ。他問我是怎么度過生病時(shí)在醫(yī)院的 時(shí)光的。我告訴他我變得很擅長(zhǎng) 玩Scrabble文字游戲，他說，“我也是！” 并向我展示，即使他大部分時(shí)候 都被獨(dú)自關(guān)押，他和他的鄰居們 用紙做成桌上游戲，通過他們的送餐口 發(fā)出游戲挑戰(zhàn) -- 這是人類頑強(qiáng)精神和 用創(chuàng)造力的適應(yīng)環(huán)境 的證明。

13:44

And my last stop was in Florida, to seethat teenage girl who'd sent me all those emojis. Her name is Unique, which isperfect, because she's the most luminous, curious person I've ever met. I askedher what she wants to do next and she said, "I want to go to college andtravel and eat weird foods like octopus that I've never tasted before and comevisit you in New York and go camping, but I'm scared of bugs, but I still wantto go camping." I was in awe of her, that she could be so optimistic andso full of plans for the future, given everything she'd been through. But asUnique showed me, it is far more radical and dangerous to have hope than tolive hemmed in by fear.

我的最后一站是佛羅里達(dá)，我去見了那位給我發(fā)了很多表情貼的女孩。她的名字是尤妮克，（意譯：獨(dú)特的）這太理想了，因?yàn)樗俏乙娺^的最活潑好奇的人。我問她下一步想做什么，她說，“我想上大學(xué)，旅行，吃我從未嘗過的奇怪的食物，比如章魚，去紐約拜訪你，然后去露營(yíng)，雖然我很怕蟲子，但我還是想去露營(yíng)”。我不禁對(duì)她產(chǎn)生一絲敬畏，她是如此樂觀并對(duì)未來如此期待，即使她經(jīng)歷了那么多。但就像尤妮克讓我意識(shí)到的，比起生活在恐懼的陰影里，希望是危險(xiǎn)的。

14:34

But the most important thing I learned onthat road trip is that the divide between the sick and the well -- it doesn'texist. The border is porous. As we live longer and longer, surviving illnessesand injuries that would have killed our grandparents, even our parents, thevast majority of us will travel back and forth between these realms, spendingmuch of our lives somewhere between the two. These are the terms of ourexistence.

但我從那次公路旅行學(xué)到的最重要的是，病人和健康人的區(qū)別。它是不存在的。他們的邊界充滿孔洞。我們的平均壽命越來越長(zhǎng)，我們?cè)谀切┛梢詩Z取我們祖父母，甚至父母生命的疾病和傷害中活下來，我們中的大多數(shù)人在生病和健康狀態(tài)之間轉(zhuǎn)換，生命大部分時(shí)間都活在兩者中間。這些是我們存在的術(shù)語。

15:08

Now, I wish I could say that since cominghome from my road trip, I feel fully healed. I don't. But once I stoppedexpecting myself to return to the person I'd been pre-diagnosis, once I learnedto accept my body and its limitations, I actually did start to feel better. Andin the end, I think that's the trick: to stop seeing our health as binary,between sick and healthy, well and unwell, whole and broken; to stop thinking thatthere's some beautiful, perfect state of wellness to strive for; and to quitliving in a state of constant dissatisfaction until we reach it.

現(xiàn)在我想說的是，那次旅行后，我覺得我完全康復(fù)了。其實(shí)我沒有。但是我一旦停止希望自己 重新成為被診斷出 白血病前的那個(gè)自己，一旦我學(xué)會(huì)接受 我的身體和它的極限，我的確感覺更好了。最后，我想 竅門應(yīng)該是： 不再把我們的健康狀況 看成由兩部分組成，健康和有疾病的，好和不好的，完整和有缺陷的； 不再認(rèn)為有一個(gè) 完美的健康狀況 是我們可以達(dá)到的； 不要再活在一個(gè) 不達(dá)到目標(biāo)就總是不滿 的狀態(tài)下。

15:56

Every single one of us will have our lifeinterrupted, whether it's by the rip cord of a diagnosis or some other kind ofheartbreak or trauma that brings us to the floor. We need to find ways to livein the in-between place, managing whatever body and mind we currently have.Sometimes, all it takes is the ingenuity of a handmade game of Scrabble orfinding that stripped-down kind of meaning in the love of family and a night onthe ballroom dance floor, or that radical, dangerous hope that I'm guessingwill someday lead a teenage girl terrified of bugs to go camping.

我們每一個(gè)人都會(huì)有生活被打亂的時(shí)候，無論那是一張?jiān)\斷書，還是別的令人心碎、精神崩潰的事，我們需要找到一個(gè)在兩種狀態(tài)中間活著的辦法，保持當(dāng)下的身體和心態(tài)。有時(shí)，這需要的只是手工制作 Scrabble的心靈手巧，或只是簡(jiǎn)簡(jiǎn)單單的家庭給予的愛，亦或是夜晚在舞廳翩翩起舞，甚至是那危險(xiǎn)的，我猜測(cè)，有一天會(huì)讓那個(gè)怕蟲子的小女孩去露營(yíng)的希望。

16:43

If you're able to do that, then you'vetaken the real hero's journey. You've achieved what it means to actually bewell, which is to say: alive, in the messiest, richest, most whole sense.

如果你能夠做到這一點(diǎn)，你就已經(jīng)踏上了真正的英雄之旅。你已經(jīng)達(dá)到了健康的真正目的，也就是：在最混亂，最豐富，一切最完整的感覺中活著。

17:01

Thank you, that's all I've got.

這就是我想分享的全部了，謝謝。

17:02

(Applause)

（掌聲）

17:05

Thank you. (Applause)

謝謝。（掌聲）