What almost dying taught me about living | Suleika Jaouad

譯者: Lilian Chiu 審譯者: Melody Tang

It was the spring of 2011,

2011 年春天，

and as they like to say in commencement speeches,

套用大家在畢業典禮 演說中很喜歡用的說法，

I was getting ready to enter the real world.

我準備好要進入真實的世界。

I had recently graduated from college

我剛從大學畢業，

and moved to Paris to start my first job.

搬到巴黎，開始我的第一份工作。

My dream was to become a war correspondent,

我曾夢想成為戰地記者，

but the real world that I found

但，我發現的真實世界，

took me into a really different kind of conflict zone.

帶我進入了一個 非常不同的衝突地帶。

At 22 years old,

22 歲時，

I was diagnosed with leukemia.

我被診斷出白血病。

The doctors told me and my parents, point-blank,

醫生直截了當地告訴我和我父母，

that I had about a 35 percent chance of long-term survival.

我能長期存活的機率是 35% 。

I couldn't wrap my head around what that prognosis meant.

我無法去想那預後所代表的意義。

But I understood that the reality and the life I'd imagined for myself

但我了解，我曾想像 自己可以擁有的現實和人生

had shattered.

都粉碎了。

Overnight, I lost my job, my apartment, my independence,

一夕之間，我失去了我的工作、 我的公寓、我的獨立性，

and I became patient number 5624.

而我成為 5624 號病人。

Over the next four years of chemo, a clinical trial

接下來四年的化療、臨床實驗，

and a bone marrow transplant,

以及骨髓移植，

the hospital became my home,

讓醫院成了我的家、

my bed, the place I lived 24/7.

我的床，我一天 24 小時， 一週 7 天都住在此。

Since it was unlikely that I'd ever get better,

因為我似乎不可能變好，

I had to accept my new reality.

我得要接受我的新現實。

And I adapted.

我適應了。

I became fluent in medicalese,

我會說流利的醫療語言，

made friends with a group of other young cancer patients,

和一群年輕的癌症病人成為朋友，

built a vast collection of neon wigs

收集了大量的亮麗假髮，

and learned to use my rolling IV pole as a skateboard.

並學會把我那支有輪子的點滴架 當成滑板來玩。

I even achieved my dream of becoming a war correspondent,

我甚至達成了當戰地記者的夢想，

although not in the way I'd expected.

不過不是我預期的樣子。

It started with a blog,

一開始是一個部落格，

reporting from the front lines of my hospital bed,

從我的醫院病床前線報導，

and it morphed into a column I wrote for the New York Times,

後來演變成我為 《紐約時報》寫的一個專欄，

called "Life, Interrupted."

叫做「人生，被打斷」。

But -- (Applause)

但——（掌聲）謝謝。

Thank you.

(Applause)

（掌聲）

But above all else,

但最重要的，

my focus was on surviving.

我把焦點放在活下來這件事上，

And -- spoiler alert --

且——警告，有雷——

(Laughter)

（笑聲）

I did survive, yeah.

我活下來了，沒錯。

(Applause)

（掌聲）

Thanks to an army of supportive humans,

感謝一大群支持我的人，

I'm not just still here, I am cured of my cancer.

我不僅還健在， 我的癌症也治癒了。

(Applause)

（掌聲）

Thank you.

謝謝。

(Applause)

（掌聲）

So, when you go through a traumatic experience like this,

當你走過像這樣的創傷經歷，

people treat you differently.

大家對待你的方式會不同。

They start telling you how much of an inspiration you are.

他們會開始告訴你， 你很激勵人心，

They say you're a warrior.

說你是生命鬥士，

They call you a hero,

或稱你為英雄，

someone who's lived the mythical hero's journey,

一名活出神話英雄般冒險的偉人，

who's endured impossible trials

撐過了不可能的試煉，

and, against the odds, lived to tell the tale,

克服萬難後，活下來訴說這個事蹟。

returning better and braver for what you're been through.

在你經歷過後變得更好、更勇敢。

And this definitely lines up with my experience.

而這非常符合我所經歷的一切。

Cancer totally transformed my life.

癌症徹底改變了我的人生。

I left the hospital knowing exactly who I was

離開醫院時， 我很清楚知道我是誰，

and what I wanted to do in the world.

及我想要在這個世界上做什麼。

And now, every day as the sun rises,

現在，每天太陽升起時，

I drink a big glass of celery juice,

在我喝完一大杯西芹汁後，

and I follow this up with 90 minutes of yoga.

我會做 90 分鐘的瑜伽。

Then, I write down 50 things I'm grateful for onto a scroll of paper

接著，我會在紙卷上寫下 我感激的 50 件事物，

that I fold into an origami crane and send sailing out my window.

然後摺成紙鶴， 讓它從我的窗戶翱翔出去。

(Laughter)

（笑聲）

Are you seriously believing any of this?

你們真的相信這些嗎？

(Laughter)

（笑聲）

I don't do any of these things.

剛剛說的我一樣也沒有做。

(Laughter)

（笑聲）

I hate yoga, and I have no idea how to fold an origami crane.

我討厭做瑜伽， 也不知道怎麼摺紙鶴。

The truth is that for me,

事實是，對我而言，

the hardest part of my cancer experience began once the cancer was gone.

最艱難的癌症經歷 在我治好癌症後才真正的開始。

That heroic journey of the survivor we see in movies

我們在電影中、在 IG 上會看到

and watch play out on Instagram --

倖存者的英勇旅程——

it's a myth.

那只是迷思。

It isn't just untrue, it's dangerous,

它不僅不是真的，還很危險，

because it erases the very real challenges of recovery.

因為它會抹除了康復過程中 最現實的挑戰。

Now, don't get me wrong -- I am incredibly grateful to be alive,

別誤會我的意思——

我很感恩我還能活著

and I am painfully aware that this struggle is a privilege

我深刻地了解這種掙扎

that many don't get to experience.

是許多人無法體會到的特權。

But it's important that I tell you

但，很重要的是，我要讓各位了解

what this projection of heroism and expectation of constant gratitude

這種將英雄主義投射在 嘗試復元的人身上，

並認為他們應時時抱持感恩的 期望，對他們有什麼影響。

does to people who are trying to recover.

Because being cured is not where the work of healing ends.

因為病被治好了並不表示 療癒的工作已完成了。

It's where it begins.

療癒其實才剛開始。

I'll never forget the day I was discharged from the hospital,

我永遠不會忘記我出院的那一天，

finally done with treatment.

終於不用再治療了。

Those four years of chemo had taken a toll on my relationship

化療的那四年傷害了

我和多年男友的關係，

with my longtime boyfriend,

and he'd recently moved out.

他不久前才搬出去。

And when I walked into my apartment, it was quiet.

我走進我的公寓，裡面好安靜。

Eerily so.

怪異恐怖式的安靜。

The person I wanted to call in this moment,

此刻，我想打電話聊天的對象，

the person who I knew would understand everything,

我知道能懂我的那個人，

was my friend Melissa.

是我的朋友梅莉莎。

She was a fellow cancer patient,

她也是癌症病人，

but she had died three weeks earlier.

但她在三星期前過世了。

As I stood there in the doorway of my apartment,

當我站在我的公寓的門廊時，

I wanted to cry.

我好想哭。

But I was too tired to cry.

但我已經累到哭不出來。

The adrenaline was gone.

腎上腺素沒了。

I had felt as if the inner scaffolding

我覺得，從我被診斷出癌症之後

that had held me together since my diagnosis

就一直支撐著我的內在支架，

had suddenly crumbled.

突然瓦解了。

I had spent the past 1,500 days working tirelessly to achieve one goal:

我不屈不撓地把過去 一千五百天都投入在

達成一個目標上：活下來。

to survive.

And now that I'd done so,

現在我已經辦到了，

I realized I had absolutely no idea how to live.

我發現我完全 不知道要如何活下去。

On paper, of course, I was better:

從書面資料來看，我的確變好了：

I didn't have leukemia,

我沒有白血病了，

my blood counts were back to normal,

我的血球數恢復正常，

and the disability checks soon stopped coming.

也不再收到身障給付支票。

To the outside world,

對外界來說，

I clearly didn't belong in the kingdom of the sick anymore.

我很顯然不再是 病人王國的一份子。

But in reality, I never felt further from being well.

但在現實中，我一點都沒有 覺得自己已經好了。

All that chemo had taken a permanent physical toll on my body.

那些化療讓我的身體 受到永久的實體損害。

I wondered, "What kind of job can I hold

我納悶：「我這種人 能找到什麼工作？

when I need to nap for four hours in the middle of the day?

我白天需要午睡四個小時。

When my misfiring immune system

我的免疫系統不時會出錯，

still sends me to the ER on a regular basis?"

讓我經常被送去急診。」

And then there were the invisible, psychological imprints

而且，我的疾病還留下了

看不見的心理烙印：

my illness had left behind:

the fears of relapse,

對疾病復發的恐懼、

the unprocessed grief,

沒有處理的悲傷、

the demons of PTSD that descended upon me for days, sometimes weeks.

有時會持續數日甚至數週的 「創傷後壓力症候群」。

See, we talk about reentry

大家談的重返社會，

in the context of war and incarceration.

是針對經歷過戰爭 和被監禁的人而言。

But we don't talk about it as much

但我們不太會談到

in the context of other kinds of traumatic experiences, like an illness.

其他類型的創傷經歷，如疾病。

Because no one had warned me of the challenges of reentry,

因為沒有人警告過我 重返社會要面臨的挑戰，

I thought something must be wrong with me.

我以為是我自己的問題。

I felt ashamed,

我感到羞愧，

and with great guilt, I kept reminding myself

帶著很強的罪惡感， 我不斷提醒我自己，

of how lucky I was to be alive at all,

我光是能活著就很幸運了，

when so many people like my friend Melissa were not.

我的朋友梅莉莎， 還有好多人沒有這種好運。

But on most days, I woke up feeling so sad and lost,

但在大部分的日子裡， 我每天起床都很悲傷和失落，

I could barely breathe.

而且幾乎無法呼吸。

Sometimes, I even fantasized about getting sick again.

有時，我甚至會幻想再次生病。

And let me tell you,

讓我告訴各位，

there are so many better things to fantasize about

當你二十多歲，且剛恢復單身時，

when you're in your twenties and recently single.

其實有許多更好的事情可以幻想。

(Laughter)

（笑聲）

But I missed the hospital's ecosystem.

但我懷念醫院的生活。

Like me, everyone in there was broken.

在醫院，所有人都跟我一樣破碎。

But out here, among the living, I felt like an impostor,

但在外頭，在活著的人當中， 我覺得自己像個騙子，

overwhelmed and unable to function.

不知所從，無法正常運作。

I also missed the sense of clarity I'd felt at my sickest.

我也懷念在我病得最重時的清澈感。

Staring your mortality straight in the eye has a way of simplifying things,

直視著你有限的生命， 讓一切變得更簡單，

of rerouting your focus to what really matters.

讓你把焦點放到真正重要之處。

And when I was sick, I vowed that if I survived,

我生病時，我發誓如果我活下來， 一定要為了什麼而活，

it had to be for something.

It had to be to live a good life, an adventurous life,

一定要好好過人生， 過一個冒險的人生、

a meaningful one.

一個有意義的人生。

But the question, once I was cured,

但我被治癒之後， 問題就變成：要怎麼做呢？

became: How?

I was 27 years old with no job, no partner, no structure.

我二十七歲，沒有工作、 沒有伴侶、生活沒有架構。

And this time, I didn't have treatment protocols or discharge instructions

這次，沒有治療大綱或出院指示

to help guide my way forward.

來協助引導我向前走。

But what I did have was an in-box full of internet messages

但，我所擁有的， 是收件匣中裝滿了

來自陌生人的網路訊息。

from strangers.

Over the years,

數年來，世界各地的人 讀了我的專欄之後，

people from all over the world had read my column,

and they'd responded with letters, comments and emails.

會用信件、留言、 電子郵件來回應我。

It was a mix, as is often the case, for writers.

那對於作家來說是大雜燴。

I got a lot of unsolicited advice

我得到許多不請自來的建議，

about how to cure my cancer with things like essential oils.

告訴我要如何用像是精油 之類的東西來治療我的癌症。

I got some questions about my bra size.

還有人問我的胸罩尺寸。

But mostly --

但，大部分——

(Laughter)

（笑聲）

mostly, I heard from people who, in their own different way,

大部分寫信給我的人 都是用他們自己的方式，

understood what it was that I was going through.

來理解我所經歷的。

I heard from a teenage girl in Florida

有位佛羅里達的青少女聯絡我，

who, like me, was coming out of chemo

她跟我一樣，剛結束化療，

and wrote me a message composed largely of emojis.

她寫給我的訊息主要 是由表情符號組成的。

I heard from a retired art history professor in Ohio named Howard,

還有一位是俄亥俄州的 退休藝術史教授霍華，

who'd spent most of his life

他一生中大部分的時間

struggling with a mysterious, debilitating health condition

都在對抗一種使他 逐漸衰弱的神秘疾病，

that he'd had from the time he was a young man.

他從年輕時就得到這種病。

I heard from an inmate on death row in Texas

還有一位德州的死囚，

by the name of Little GQ --

叫做小 GQ——

short for "Gangster Quinn."

GQ 是「幫派混混昆恩」的縮寫。

He'd never been sick a day in his life.

他一生中都沒有生過病。

He does 1,000 push-ups to start off each morning.

每天早晨他從做 一千個伏地挺身開始。

But he related to what I described in one column

但我在一個專欄中寫的內容，

as my "incanceration,"

讓他感同身受到是 我的「癌症監禁」，

and to the experience of being confined to a tiny fluorescent room.

讓我被侷限在一個 小小的螢光房間中。

"I know that our situations are different," he wrote to me,

他信上這麼寫著： 「我知道我們的情況不同，

"But the threat of death lurks in both of our shadows."

但死亡的威脅 在我們的影子裡虎視眈眈。」

In those lonely first weeks and months of my recovery,

在我恢復後的前幾週、 幾個月，我十分寂寞，

these strangers and their words became lifelines,

這些陌生人和他們的 話語成了我的生命線，

dispatches from people of so many different backgrounds,

雖然是來自背景如此迥然不同的人，

with so many different experiences,

有這麼多不同的經歷，

all showing me the same thing:

他們卻都告訴我同樣一件事：

you can be held hostage

你可以被你所遇到過 最糟糕的事情給綁架，

by the worst thing that's ever happened to you

and allow it to hijack your remaining days,

並讓它挾持你所有剩下的日子，

or you can find a way forward.

或者，你可以找到 一個向前走的方式。

I knew I needed to make some kind of change.

我知道我需要做某種改變。

I wanted to be in motion again

我想要再次動起來，

to figure out how to unstuck myself and to get back out into the world.

想辦法讓自己從現狀脫身， 回到外面的世界。

And so I decided to go on a real journey --

所以我決定踏上 一段真正的旅行——

not the bullshit cancer one

不是大家認為我應該去做的

or the mythical hero's journey that everyone thought I should be on,

狗屁癌症之旅或神話英雄之旅，

but a real, pack-your-bags kind of journey.

而是真正要打包的那種旅行。

I put everything I owned into storage,

我把我擁有的所有東西 都放到儲藏室，

rented out my apartment, borrowed a car

把我的公寓租出去，借了一台車，

and talked a very a dear but somewhat smelly friend

說服了一個很親密 但又有點臭的朋友，

into joining me.

去伴隨我的旅行。

(Laughter)

（笑聲）

Together, my dog Oscar and I embarked on a 15,000-mile road trip

我和我的狗奧斯卡一起展開了

一萬五千英里的全美公路之旅。

around the United States.

Along the way, we visited some of those strangers who'd written to me.

一路上，我們去拜訪了 一些寫信給我的陌生人。

I needed their advice,

我需要他們的建議，

also to say to them, thank you.

也需要對他們說聲謝謝。

I went to Ohio and stayed with Howard, the retired professor.

我們去俄亥俄州， 住在退休教授霍華家。

When you've suffered a loss or a trauma,

當你失去過或是受過創傷，

the impulse can be to guard your heart.

自然會築起心防。

But Howard urged me to open myself up to uncertainty,

但霍華鼓勵我打開自己， 去面對不確定性，

to the possibilities of new love, new loss.

面對新的機會， 不論是新愛或是新的失去。

Howard will never be cured of illness.

霍華的疾病永遠不會好。

And as a young man, he had no way of predicting how long he'd live.

年輕時，他完全無法 預測他能活多久。

But that didn't stop him from getting married.

但那並沒有阻止他結婚。

Howard has grandkids now,

現在霍華都有孫子了，

and takes weekly ballroom dancing lessons with his wife.

每週還會跟太太去上交際舞的課。

When I visited them,

我拜訪他們時，

they’d recently celebrated their 50th anniversary.

他們才剛慶祝完結婚五十週年。

In his letter to me, he'd written,

他給我的信上寫到：

"Meaning is not found in the material realm;

「你無法在物質王國找到意義；

it's not in dinner, jazz, cocktails or conversation.

它並不存在於晚餐、爵士樂、 雞尾酒，或對話當中。

Meaning is what's left when everything else is stripped away."

當所有其他的一切都被奪去時， 剩下的才是意義。」

I went to Texas, and I visited Little GQ on death row.

我去德州拜訪了死囚小 GQ。

He asked me what I did to pass all that time

他問我，我在醫院病房時

I'd spent in a hospital room.

怎麼打發時間。

When I told him that I got really, really good at Scrabble,

我告訴他，我把拼字遊戲 玩到出神入化，

he said, "Me, too!" and explained how,

他說：「我也是！」並解釋，

even though he spends most of his days in solitary confinement,

雖然他大部分的時間 都待在單獨監禁室，

he and his neighboring prisoners make board games out of paper

他和附近的囚犯仍然 想辦法在紙上玩桌遊，

and call out their plays through their meal slots --

透過送餐的小洞口喊出 他們的下一步棋——

a testament to the incredible tenacity of the human spirit

證明了人類精神的堅韌，

and our ability to adapt with creativity.

以及我們透過創意來適應的能力。

And my last stop was in Florida,

我的最後一站是佛羅里達州，

to see that teenage girl who'd sent me all those emojis.

去拜訪寫給我一堆 表情符號的青少女。

Her name is Unique, which is perfect,

她的名字很完美， 叫做尤妮克（獨特），

because she's the most luminous, curious person I've ever met.

因為她是我所見過最光芒四射、 最有好奇心的人。

I asked her what she wants to do next and she said,

我問她，她接下來 想要做什麼，她說：

"I want to go to college and travel

「我想要讀大學，去旅行，

and eat weird foods like octopus that I've never tasted before

吃我以前從來沒有嚐過的 怪異食物，像章魚，

and come visit you in New York

以及到紐約拜訪你，

and go camping, but I'm scared of bugs,

然後去露營，但我很怕蟲子，

but I still want to go camping."

但我仍然想要去露營。」

I was in awe of her,

她讓我很敬佩，

that she could be so optimistic and so full of plans for the future,

她能如此樂觀， 對未來有滿滿的計畫，

given everything she'd been through.

且是在她經歷過這麼多病苦之後。

But as Unique showed me,

但尤妮克讓我看到的是，

it is far more radical and dangerous to have hope

擁有希望，比起活在恐懼中， 遠遠來得更激進、更危險。

than to live hemmed in by fear.

But the most important thing I learned on that road trip

但，我從這次公路之旅 所學到最重要的一課，

is that the divide between the sick and the well --

就是生病和健康之間的劃分——

it doesn't exist.

並不存在。

The border is porous.

這條界線是能滲透的。

As we live longer and longer,

隨著我們越活越久，

surviving illnesses and injuries that would have killed our grandparents,

從可能會讓我們祖父母，甚至父母

致命的疾病和傷害中存活下來，

even our parents,

the vast majority of us will travel back and forth between these realms,

我們大部分人都會 在這兩邊之間來來回回，

spending much of our lives somewhere between the two.

我們一生大部分的時間， 都會待在兩邊之間。

These are the terms of our existence.

這些，就是我們存在的條件。

Now, I wish I could say that since coming home from my road trip,

我也希望我能夠說， 從我的公路之旅回來之後，

I feel fully healed.

我就完全被治癒了。

I don't.

但並沒有。

But once I stopped expecting myself

但一旦我不再期望我自己

to return to the person I'd been pre-diagnosis,

回到我過去被診斷前的那個人，

once I learned to accept my body and its limitations,

一旦我學會接受 我的身體和它的限制，

I actually did start to feel better.

我就真的開始感覺比較好了。

And in the end, I think that's the trick:

最終，我想這就是關鍵吧：

to stop seeing our health as binary,

不要把我們的健康視為是二元的，

between sick and healthy,

只分成生病跟健康，

well and unwell,

好跟不好，

whole and broken;

完整跟破碎；

to stop thinking that there's some beautiful, perfect state of wellness

不要再認為有某種美麗、 完美的健康狀態

to strive for;

要努力去追求；

and to quit living in a state of constant dissatisfaction

不要再用一種沒達到這個目標

就不能滿足的狀態來過日子。

until we reach it.

Every single one of us will have our life interrupted,

我們每一個人，都會遇到 人生被打斷的時候，

whether it's by the rip cord of a diagnosis

不論是因為被診斷結果撕裂，

or some other kind of heartbreak or trauma that brings us to the floor.

或某種心碎或創傷讓我們陷入谷底。

We need to find ways to live in the in-between place,

我們得要找到在 中間地帶生活的方法，

managing whatever body and mind we currently have.

盡量去應用我們現有的身和心， 不論它們的狀況如何。

Sometimes, all it takes is the ingenuity of a handmade game of Scrabble

有時，需要的就只是 手製拼字遊戲的巧思，

or finding that stripped-down kind of meaning in the love of family

在家人的愛當中

and a night on the ballroom dance floor,

和在舞池地板上的夜晚，

or that radical, dangerous hope

或是那個激進、危險的希望 找到最根本的意義，

that I'm guessing will someday lead a teenage girl terrified of bugs

我想可能有一天，這樣的希望 會引領一名害怕蟲子的青少女

to go camping.

去露營。

If you're able to do that,

如果你能做到這些，

then you've taken the real hero's journey.

那麼你就已經完成了 真正的英雄之旅。

You've achieved what it means to actually be well,

你已經達成了真正健康的意義，

which is to say: alive, in the messiest, richest, most whole sense.

也就是：在最混亂、最豐富、 最完整的意義上，活著。

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

謝謝！我要講的就是這些了。

(Applause)

（掌聲）

Thank you.

謝謝！

(Applause)

（掌聲）