What almost dying taught me about living | Suleika Jaouad

翻译人员: Ziyao Wang 校对人员: Bighead Ge

It was the spring of 2011,

2011年春天，

and as they like to say in commencement speeches,

就像大学毕业典礼 演讲里说的那样，

I was getting ready to enter the real world.

我做好了面对现实 世界的准备。

I had recently graduated from college

我刚刚大学毕业，

and moved to Paris to start my first job.

搬到了巴黎， 开始了我第一份工作。

My dream was to become a war correspondent,

我的梦想是成为 一名战地记者，

but the real world that I found

但现实世界把我 带到了一个

took me into a really different kind of conflict zone.

很不一样的矛盾世界。

At 22 years old,

22岁时，

I was diagnosed with leukemia.

我被诊断出了白血病。

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

医生坦白地告诉 我和我的父母，

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

我有百分之三十五的几率 可以活下去。

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

我不能理解和接受 那诊断书意味着什么。

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

但我明白我想象中的世界

had shattered.

已经被动摇。

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

一夜之间，我失去了 工作，房子，自由，

and I became patient number 5624.

我变成了病号5624。

Over the next four years of chemo, a clinical trial

在接下来4年里， 我接受了临床化疗，

and a bone marrow transplant,

做了骨髓移植，

the hospital became my home,

医院变成了我家，

my bed, the place I lived 24/7.

还有我的床， 我一直呆着的地方。

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

自从觉得我的病 再也不会好了，

I had to accept my new reality.

我接受了这个现实。

And I adapted.

我习惯了，

I became fluent in medicalese,

我流利地说着 医学名词，

made friends with a group of other young cancer patients,

其他年轻的癌症病人 成了我的朋友，

built a vast collection of neon wigs

我收集五颜六色的假发，

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

把移动点滴架当成滑板。

I even achieved my dream of becoming a war correspondent,

我甚至改变了成为 战地记者的梦想，

although not in the way I'd expected.

这其实出乎我的意料。

It started with a blog,

这是从一篇博客开始的，

reporting from the front lines of my hospital bed,

从我病床记录第一页开始，

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

它慢慢变成了 纽约时报的一个专栏，

called "Life, Interrupted."

叫做“生命·摧毁”。

But -- (Applause)

但是 --（掌声）

Thank you.

谢谢。

(Applause)

（掌声）

But above all else,

关键是，

my focus was on surviving.

我的关注点是活下去。

And -- spoiler alert --

并且 -- 我要剧透了哈 --

(Laughter)

（笑声）

I did survive, yeah.

我活了下来。

(Applause)

（掌声）

Thanks to an army of supportive humans,

感谢那些支持过我的人们，

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

我不仅仅还活着， 而且治好了癌症。

(Applause)

（掌声）

Thank you.

谢谢。

(Applause)

（掌声）

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

所以当我们有过 这种痛苦的经历后，

people treat you differently.

别人会对你另眼相看。

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

他们会告诉你 你的故事多么鼓舞人心。

They say you're a warrior.

他们说你是一个战士。

They call you a hero,

他们叫你英雄，

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

就好像你踏上了一段 神秘的危险旅程，

who's endured impossible trials

经历了各种考验。

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

克服困难重重凯旋归来， 开始讲述关于自己的传说，

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

并且因为所见所闻 变得更厉害、勇敢。

And this definitely lines up with my experience.

这跟我的经历 确实有点类似。

Cancer totally transformed my life.

癌症改变了我的生活。

I left the hospital knowing exactly who I was

我离开医院， 清楚地认识自己，

and what I wanted to do in the world.

知道我想做什么。

And now, every day as the sun rises,

现在，每天日出时，

I drink a big glass of celery juice,

我会喝一大杯芹菜汁，

and I follow this up with 90 minutes of yoga.

然后做一个半小时瑜伽。

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

然后，我会在一张纸上 写下让我感激的50件事，

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

折成一只纸鹤并让它 从窗户飞出去。

(Laughter)

（笑声）

Are you seriously believing any of this?

你们相信吗？

(Laughter)

（笑声）

I don't do any of these things.

我根本不会做 上述的任何事。

(Laughter)

（笑声）

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

我讨厌瑜伽， 也不会折纸鹤。

The truth is that for me,

实际上，

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

我的癌症经历中最难的 是癌症被治好后的时光。

That heroic journey of the survivor we see in movies

我们在电影和 Instagram上

and watch play out on Instagram --

看到那些幸存者们的英雄故事 --

it's a myth.

他们都是个谜。

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

这些描述不仅不现实， 而且很危险。

because it erases the very real challenges of recovery.

因为他们掩饰了 康复过程中真实的挑战。

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

不要误会 -- 我非常感激 有活下来的机会，

and I am painfully aware that this struggle is a privilege

我痛苦地意识到 与病魔抗争是

that many don't get to experience.

一种大多数人都 没有的幸运。

But it's important that I tell you

但我想告诉你们的是，

what this projection of heroism and expectation of constant gratitude

这种英雄主义的映射和 对持续感激的期待

does to people who are trying to recover.

对努力康复的病人来说， 意味着什么。

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

因为被治疗好 不意味着康复结束，

It's where it begins.

而意味着开始。

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

我永远都不会忘记出院那天，

finally done with treatment.

结束治疗时的感觉。

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

4年的化疗淡化了

with my longtime boyfriend,

我和男友的感情，

and he'd recently moved out.

他最近搬出去了。

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

当我走进家门时， 里面是寂静的。

Eerily so.

这只是个开始。

The person I wanted to call in this moment,

此时我最想打电话的人，

the person who I knew would understand everything,

她会明白我说的一切，

was my friend Melissa.

是我的朋友梅丽莎。

She was a fellow cancer patient,

她是一位病友，

but she had died three weeks earlier.

但她三周前去世了。

As I stood there in the doorway of my apartment,

我站在我家的门廊里，

I wanted to cry.

我想哭。

But I was too tired to cry.

但我累得哭不出来。

The adrenaline was gone.

肾上腺素作用褪去，

I had felt as if the inner scaffolding

我感觉心中那个

that had held me together since my diagnosis

从我被确诊第一天 支撑我的支架，

had suddenly crumbled.

忽然坍塌。

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

在过去1500天里， 我只为一个目标努力：

to survive.

活下去。

And now that I'd done so,

现在目标实现了，

I realized I had absolutely no idea how to live.

我意识到我不知道 怎么继续活下去。

On paper, of course, I was better:

纸面上看，我痊愈了：

I didn't have leukemia,

我不再患白血病。

my blood counts were back to normal,

我的血样检查恢复正常，

and the disability checks soon stopped coming.

我不再有异样检查。

To the outside world,

对外人来说，

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

我再也不属于那个 病号的世界了。

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

但实际上，我从未 感觉痊愈。

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

我所接受的化疗在我身上 留下了永久的伤疤。

I wondered, "What kind of job can I hold

我心想，“什么工作

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

可以让我在白天睡四个小时，

When my misfiring immune system

当我那不奏效的免疫系统

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

让我去定时接受化疗时？“

And then there were the invisible, psychological imprints

还有那无形的、 疾病留下的

my illness had left behind:

心理印记：

the fears of relapse,

对疾病复发的恐惧，

the unprocessed grief,

毫无掩饰的悲伤，

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

以及创伤后应激障碍 每次对我长达数天，有时数周的折磨。

See, we talk about reentry

当我们讲到战争和关押，

in the context of war and incarceration.

我们总谈到重新 融入这个社会。

But we don't talk about it as much

但当我们说到痛苦的经历，

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

如疾病时，我们很少那么讲。

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

因为没有人曾警告过我 重新融入这个社会的困难，

I thought something must be wrong with me.

所以我觉得是我的问题。

I felt ashamed,

我感到很惭愧，

and with great guilt, I kept reminding myself

很有罪恶感， 并不停提醒自己

of how lucky I was to be alive at all,

我能活下来已经很幸运了，

when so many people like my friend Melissa were not.

许多像梅丽莎一样的 病友都没能撑下来。

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

但无数的日子里，我 悲伤而失落地醒来，

I could barely breathe.

我几乎无法呼吸。

Sometimes, I even fantasized about getting sick again.

有时我甚至幻想着 又一次生病。

And let me tell you,

我想告诉你们，

there are so many better things to fantasize about

在你二十多岁并单身时，

when you're in your twenties and recently single.

有更好的事物可以幻想。

(Laughter)

（笑声）

But I missed the hospital's ecosystem.

但我怀念在医院的时环境。

Like me, everyone in there was broken.

那里的每一个人都 像我一样脆弱，

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

但在医院外的健康人群中， 我觉得自己像个冒名顶替者，

overwhelmed and unable to function.

不知所措，无法正常运作。

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

我也怀念我病情 最严重时的清晰感。

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

直视自己的死亡让我 简化一切其他事物，

of rerouting your focus to what really matters.

重新把注意力集中在 真正重要的事情上。

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

生病时，我发誓 如果活下来了，

it had to be for something.

我一定会为了 一个目标而活。

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

这个目标是好好活着， 过上有冒险精神，

a meaningful one.

有意义的生活。

But the question, once I was cured,

但在我痊愈后，

became: How?

问题变成了：怎么做？

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

我27岁，没工作， 没伴侣，没条理。

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

这时，没有任何 治疗协议或医嘱

to help guide my way forward.

指导我前进。

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

不过我有满满 一收件箱的信息，

from strangers.

来自陌生人。

Over the years,

多年来，

people from all over the world had read my column,

全世界的人们 读到我的专栏，

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

他们通过信件、 评论和邮件回应。

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

那是个大杂烩，对作家 来说应该很常见。

I got a lot of unsolicited advice

我得到了很多自发 而不靠谱的建议，

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

比如怎样用精油 治好我的癌症。

I got some questions about my bra size.

还有些人问我 内衣码数。

But mostly --

但是 --

(Laughter)

（笑声）

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

总体来说，那些信息 都来自从不同角度

understood what it was that I was going through.

明白我正经历 什么样的痛苦的人们。

I heard from a teenage girl in Florida

我收到一封来自 佛罗里达的信，

who, like me, was coming out of chemo

那个小女孩也 刚接受化疗，

and wrote me a message composed largely of emojis.

她的信里有 很多表情贴。

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

我还收到住在俄亥俄州， 退休艺术史教授霍华德的信，

who'd spent most of his life

从他年轻时起，

struggling with a mysterious, debilitating health condition

他一生都与一种罕见的，

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

令人虚弱的疾病抗争。

I heard from an inmate on death row in Texas

还有一封德州的 死囚的来信。

by the name of Little GQ --

他署名是小GQ --

short for "Gangster Quinn."

是“奎因匪徒”的简称。

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

他一生从没真正病过。

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

他每天早上 做1000个俯卧撑。

But he related to what I described in one column

但他对我在一次 专栏里所描述的

as my "incanceration,"

"癌症关押“很有同感，

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

特别是被困在一个 没什么亮光的小房间里。

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

“我知道我们处境 大不相同“，他写道，

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

“但死亡的威胁都 潜伏在我们的影子中”。

In those lonely first weeks and months of my recovery,

在刚开始恢复的 那孤独的几个月里，

these strangers and their words became lifelines,

这些陌生人的声音 成了我的生命线，

dispatches from people of so many different backgrounds,

从无数经验、背景 完全不同的人

with so many different experiences,

手中发出，

all showing me the same thing:

都说着的类似的话：

you can be held hostage

你可以被

by the worst thing that's ever happened to you

你所遇到的 最坏的事困住，

and allow it to hijack your remaining days,

让它劫持走 你余下的日子，

or you can find a way forward.

但你也可以 找办法前进。

I knew I needed to make some kind of change.

我知道我需要改变。

I wanted to be in motion again

我想重新振作起来，

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

找到走出困境的办法， 回到正常的世界。

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

因此我决定踏上一次 真正的旅程 --

not the bullshit cancer one

不是可恶的癌症，

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

也不是那种人们认为我 应该经历的神秘英雄之旅，

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

而是真正的、 说走就走的旅行。

I put everything I owned into storage,

我把我的东西 放进储物间，

rented out my apartment, borrowed a car

外租了我的公寓， 借了辆车，

and talked a very a dear but somewhat smelly friend

说服了一位可爱 但臭烘烘的朋友

into joining me.

跟我一起出门。

(Laughter)

（笑声）

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

我和我的狗奥斯卡， 踏上了15000英里的

around the United States.

环美公路旅行。

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

路上，我们拜访了那些 写信给我的陌生人。

I needed their advice,

我需要他们的建议，

also to say to them, thank you.

并想向他们说谢谢。

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

我去了俄亥俄州的 退休教授霍华德家过夜。

When you've suffered a loss or a trauma,

当我们遭受损失 或不幸时，

the impulse can be to guard your heart.

会有守卫自己 心灵的冲动。

But Howard urged me to open myself up to uncertainty,

但霍华德鼓励着我 拥抱未知，

to the possibilities of new love, new loss.

坦然接受新的爱与失。

Howard will never be cured of illness.

霍华德的病 从未被治好，

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

年轻时，他无法 预计自己还能活多久，

But that didn't stop him from getting married.

但这没有阻止他 走进婚姻的殿堂。

Howard has grandkids now,

他现在有几个孙子了，

and takes weekly ballroom dancing lessons with his wife.

每周还和妻子去 上舞蹈课。

When I visited them,

我拜访他们时，

they’d recently celebrated their 50th anniversary.

他们最近在庆祝 结婚50周年。

In his letter to me, he'd written,

在给我的信里， 他写道，

"Meaning is not found in the material realm;

“意义不存在于 物质世界；

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

它不是晚餐，爵士乐， 鸡尾酒或谈话。

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

意义是所有东西都 被除去后剩下的一切“。

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

我去了德州， 拜访了死囚小GQ。

He asked me what I did to pass all that time

他问我是怎么度过 生病时在医院的

I'd spent in a hospital room.

时光的。

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

我告诉他我变得很擅长 玩Scrabble文字游戏，

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

他说，“我也是！” 并向我展示，

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

即使他大部分时候 都被独自关押，

he and his neighboring prisoners make board games out of paper

他和他的邻居们 用纸做成桌上游戏，

and call out their plays through their meal slots --

通过他们的送餐口 发出游戏挑战 --

a testament to the incredible tenacity of the human spirit

这是人类顽强精神和

and our ability to adapt with creativity.

用创造力的适应环境 的证明。

And my last stop was in Florida,

我的最后一站 是佛罗里达，

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

我去见了那位给我发了 很多表情贴的女孩。

Her name is Unique, which is perfect,

她的名字是尤妮克， （意译：独特的）

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

这太理想了，因为她是 我见过的最活泼好奇的人。

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

我问她下一步想做什么， 她说，

"I want to go to college and travel

“我想上大学，旅行，

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

吃我从未尝过的奇怪的 食物，比如章鱼，

and come visit you in New York

去纽约拜访你，

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

然后去露营， 虽然我很怕虫子，

but I still want to go camping."

但我还是想去露营”。

I was in awe of her,

我不禁对她 产生一丝敬畏，

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

她是如此乐观并 对未来如此期待，

given everything she'd been through.

即使她经历了那么多。

But as Unique showed me,

但就像尤妮克 让我意识到的，

it is far more radical and dangerous to have hope

比起生活在 恐惧的阴影里，

than to live hemmed in by fear.

希望是危险的。

But the most important thing I learned on that road trip

但我从那次公路旅行 学到的最重要的是，

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

病人和健康人的区别。

it doesn't exist.

它是不存在的。

The border is porous.

他们的边界充满孔洞。

As we live longer and longer,

我们的平均寿命越来越长，

surviving illnesses and injuries that would have killed our grandparents,

我们在那些可以夺取我们 祖父母，甚至父母生命的

even our parents,

疾病和伤害中活下来，

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

我们中的大多数人在 生病和健康状态之间转换，

spending much of our lives somewhere between the two.

生命大部分时间 都活在两者中间。

These are the terms of our existence.

这些是我们 存在的术语。

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

现在我想说的是， 那次旅行后，

I feel fully healed.

我觉得我完全康复了。

I don't.

其实我没有。

But once I stopped expecting myself

但是我一旦 停止希望自己

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

重新成为被诊断出 白血病前的那个自己，

once I learned to accept my body and its limitations,

一旦我学会接受 我的身体和它的极限，

I actually did start to feel better.

我的确感觉更好了。

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

最后，我想 窍门应该是：

to stop seeing our health as binary,

不再把我们的健康状况 看成由两部分组成，

between sick and healthy,

健康和有疾病的，

well and unwell,

好和不好的，

whole and broken;

完整和有缺陷的；

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

不再认为有一个 完美的健康状况

to strive for;

是我们可以达到的；

and to quit living in a state of constant dissatisfaction

不要再活在一个 不达到目标就总是不满

until we reach it.

的状态下。

Every single one of us will have our life interrupted,

我们每一个人都会 有生活被打乱的时候，

whether it's by the rip cord of a diagnosis

无论那是一张诊断书，

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

还是别的令人心碎、 精神崩溃的事，

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

我们需要找到一个在 两种状态中间活着的办法，

managing whatever body and mind we currently have.

保持当下的身体和心态。

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

有时，这需要的只是手工制作 Scrabble的心灵手巧，

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

或只是简简单单的 家庭给予的爱，

and a night on the ballroom dance floor,

亦或是夜晚在舞厅 翩翩起舞，

or that radical, dangerous hope

甚至是那危险的，

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

我猜测，有一天会让那个 怕虫子的小女孩去露营

to go camping.

的希望。

If you're able to do that,

如果你能够 做到这一点，

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

你就已经踏上了 真正的英雄之旅。

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

你已经达到了 健康的真正目的，

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

也就是：在最混乱，最丰富， 一切最完整的感觉中活着。

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

这就是我想分享 的全部了，谢谢。

(Applause)

（掌声）

Thank you.

谢谢。

(Applause)

（掌声）