What makes life worth living in the face of death | Lucy Kalanithi

翻译人员: Wei Wu 校对人员: Yolanda Zhang

A few days after my husband Paul was diagnosed with stage IV lung cancer,

就在我的丈夫Paul被确诊为 肺癌晚期的几天后,

we were lying in our bed at home,

我们躺在卧室里,

and Paul said,

Paul说,

"It's going to be OK."

"一切都会变好的。"

And I remember answering back,

我记得我回答说,

"Yes.

"是的。"

We just don't know what OK means yet."

"我们只是还不知道变好的意思."

Paul and I had met as first-year medical students at Yale.

我跟Paul是在耶鲁医学院 读第一年时认识的。

He was smart and kind and super funny.

他聪明、友善、超级有幽默感。

He used to keep a gorilla suit in the trunk of his car,

他常年在车里的后备箱 放着一件大猩猩服，

and he'd say, "It's for emergencies only."

他说，“以备不时之需。”

(Laughter)

（笑声）

I fell in love with Paul as I watched the care he took with his patients.

我在目睹了他细心照顾他的患者 之后便爱上了他。

He stayed late talking with them,

他跟患者可以聊到很晚，

seeking to understand the experience of illness

希望能够理解疾病带来的感触，

and not just its technicalities.

而不仅仅是技术层面的细节。

He later told me he fell in love with me

他后来告诉我，从他看到我面对着

when he saw me cry over an EKG of a heart that had ceased beating.

一份停止跳动的 心电图哭泣那刻就爱上我了。

We didn't know it yet,

我们那时不知道，

but even in the heady days of young love,

早在我们尚未坠入爱河之前，

we were learning how to approach suffering together.

我们就已经在学习如何 共同承担痛苦。

We got married and became doctors.

我们结婚了，毕业后都当了医生。

I was working as an internist

我选择了当内科医生，

and Paul was finishing his training as a neurosurgeon

Paul当时即将结束 神经外科的训练课程，

when he started to lose weight.

但·他的体重也开始往下掉。

He developed excruciating back pain and a cough that wouldn't go away.

他的后背逐渐开始疼痛， 咳嗽总是不见好。

And when he was admitted to the hospital,

当他被收治住院时，

a CT scan revealed tumors in Paul's lungs and in his bones.

CT显示肿瘤已经遍布 他的肺和骨头。

We had both cared for patients with devastating diagnoses;

我们都细心照顾过各种身患 重大疾患的病人；

now it was our turn.

现在轮到我们了。

We lived with Paul's illness for 22 months.

我们跟Paul的癌症抗争了22个月。

He wrote a memoir about facing mortality.

他写了一本回忆录， 记录面对死亡的感受。

I gave birth to our daughter Cady,

我们的女儿Cady顺利出生。

and we loved her and each other.

我们爱她，爱彼此。

We learned directly how to struggle through really tough medical decisions.

我们学会了如何面对 各种艰难的医学选择。

The day we took Paul into the hospital for the last time

Paul最后一次收治住院那天，

was the most difficult day of my life.

对于我而言是最艰难的一天。

When he turned to me at the end

当他在最后的时刻，看着我，

and said, "I'm ready,"

说，“我准备好了。”

I knew that wasn't just a brave decision.

我明白，那不仅是勇敢的选择，

It was the right one.

也是正确的选择。

Paul didn't want a ventilator and CPR.

Paul并不想要呼吸机和心肺复苏，

In that moment,

在那一刻，

the most important thing to Paul

对于Paul而言最重要的事情

was to hold our baby daughter.

是抱着我们襁褓中的女儿。

Nine hours later,

九个小时之后，

Paul died.

Paul走了。

I've always thought of myself as a caregiver --

我一直认为自己是一名照料者——

most physicians do --

就像其他医生一样——

and taking care of Paul deepened what that meant.

而照顾Paul的经历让我对于 照料者的理解更深刻。

Watching him reshape his identity during his illness,

目睹他在跟病魔斗争的过程中 对自己的重塑，

learning to witness and accept his pain,

学会见证和接受他的痛苦，

talking together through his choices --

跟他一起接受他的选择——

those experiences taught me

这些经历让我学会了

that resilience does not mean bouncing back to where you were before,

坚强并不意味着回到过去的自己，

or pretending that the hard stuff isn't hard.

或假装那些很痛苦的事情 没什么大不了的。

It is so hard.

太艰难了。

It's painful, messy stuff.

过程充满痛苦，让人伤透脑筋。

But it's the stuff.

但是就是这个过程。

And I learned that when we approach it together,

我知道了当我们一起努力，

we get to decide what success looks like.

我们就能知道成功是什么样子。

One of the first things Paul said to me after his diagnosis was,

当他的诊断结果出来后， 他对我说的第一句话是，

"I want you to get remarried."

“我希望你能再嫁。”

And I was like, whoa, I guess we get to say anything out loud.

我当时想，哇，我觉得我们 当时什么都敢说了。

(Laughter)

（笑声）

It was so shocking

非常的震惊，

and heartbreaking ...

令人心碎——

and generous,

同时也是一种大度，

and really comforting

同时也非常舒心，

因为我们完全的诚实，

because it was so starkly honest,

and that honesty turned out to be exactly what we needed.

这种诚实正是我们最需要的。

Early in Paul's illness,

在Paul患病的早期，

we agreed we would just keep saying things out loud.

我们商量好，我们什么事情都敞开说。

Tasks like making a will,

像是立遗嘱这样的事情，

or completing our advance directives --

完成预留医疗指示（ADS）—— （译注：丧失主观意识时的医护指示）

tasks that I had always avoided --

那些我一直逃避的事情——

were not as daunting as they once seemed.

当真正面对时并没有那么可怕。

I realized that completing an advance directive is an act of love --

我意识到预留医疗指示（ADS） 是一种爱的举动——

like a wedding vow.

就像是婚礼上的誓言。

A pact to take care of someone,

一种照料对方的契约，

codifying the promise

将誓言铭刻下来

that til death do us part,

直到生死相隔，

I will be there.

我永不言弃。

If needed, I will speak for you.

我会在需要时为你表达你的意愿。

I will honor your wishes.

我会完成你的愿望。

That paperwork became a tangible part of our love story.

这个法律文书成为我们 爱情故事的见证。

As physicians,

作为医生，

我跟Paul都有充分的心理准备

Paul and I were in a good position

to understand and even accept his diagnosis.

去理解，甚至接受诊断结果。

We weren't angry about it,

我们并没有感到愤怒，

luckily,

很幸运，

because we'd seen so many patients in devastating situations,

因为我们早就目睹太多危重的病人，

and we knew that death is a part of life.

我们知道，死，是生命的一部分。

But it's one thing to know that;

但是，大道理谁都知道；

it was a very different experience

当真的自己遇到的时候，

to actually live with the sadness and uncertainty of a serious illness.

亲身经历悲伤和不确定性 是完全不同的体验。

Huge strides are being made against lung cancer,

肺癌的治疗方法效果很好，

but we knew that Paul likely had months to a few years left to live.

但是我们知道Paul的预期寿命 只有几年，甚至几个月。

During that time,

在那段时间，

Paul wrote about his transition from doctor to patient.

Paul记录了他从医生 到病人的转变，

He talked about feeling like he was suddenly at a crossroads,

他谈到了突然感觉 自己站在了十字路口，

and how he would have thought he'd be able to see the path,

以及他是如何以为自己能看清道路，

that because he treated so many patients,

因为他已经帮助过那么多病人，

maybe he could follow in their footsteps.

或许他可以追踪他们的脚步。

But he was totally disoriented.

但是他彻底的迷失了方向。

Rather than a path,

根本不是一条路，

Paul wrote,

Paul写到，

"I saw instead

“我看到的是

only a harsh, vacant, gleaming white desert.

只有一片荒芜、空虚、 泛着光的白色的沙漠。

As if a sandstorm had erased all familiarity.

就像是一场沙尘暴将所有 熟悉的东西都刮跑了。

I had to face my mortality

我必须面对我将死的事实，

and try to understand what made my life worth living,

尝试搞清楚如何能够活得有意义，

and I needed my oncologist's help to do so."

我需要我的肿瘤医生帮助我。”

The clinicians taking care of Paul

临床医生们对Paul的照料

gave me an even deeper appreciation for my colleagues in health care.

让我对于我医疗界的同事 有了更深的感激。

We have a tough job.

我们的工作很难。

We're responsible for helping patients have clarity around their prognoses

我们有责任帮助患者 清楚的知道预期后果

and their treatment options,

以及他们治疗的选择，

and that's never easy, but it's especially tough

这向来不是简单的事情， 尤其是处理癌症

when you're dealing with potentially terminal illnesses like cancer.

等不治之症的时候，选择更加的艰难。

Some people don't want to know how long they have left,

有些人愿意不去知道 还有多少时日，

others do.

有的人想知道。

Either way, we never have those answers.

无论哪种，我们都不知道答案的。

Sometimes we substitute hope

有时候我们会强调最好的可能性，

by emphasizing the best-case scenario.

以期让希望显得更大一些。

In a survey of physicians,

一次面向医生的调查中，

55 percent said they painted a rosier picture

55%的医生说当他们 跟病人描述预后时，

than their honest opinion

相比于他们真实的意见，

when describing a patient's prognosis.

他们会尝试说得更有希望一些。

It's an instinct born out of kindness.

这是一种出于本能的友善。

But researchers have found

但是研究人员发现

that when people better understand the possible outcomes of an illness,

当患者能够更好的理解 疾病的预期后果时，

they have less anxiety,

他们的焦虑更少，

greater ability to plan

更有可能好好规划，

and less trauma for their families.

并可能减少给家庭带来的伤痛。

Families can struggle with those conversations,

一个家庭在讨论这类话题时 可能非常痛苦，

but for us, we also found that information immensely helpful with big decisions.

但是我们同样发现在做重大决策时 真实信息的重要性。

Most notably,

最重要的是，

whether to have a baby.

要不要生孩子。

Months to a few years meant Paul was not likely to see her grow up.

只有不到一两年的预期寿命意味着 Paul无法看到女儿长大。

But he had a good chance of being there for her birth

但是他能够有机会看到女儿的出生

and for the beginning of her life.

并在生命开始的时候陪伴左右。

I remember asking Paul

我记得问过Paul

if he thought having to say goodbye to a child

要跟一个襁褓中的孩子告别

would make dying even more painful.

会不会让死亡更加痛苦。

And his answer astounded me.

他的回答震撼了我。

He said,

他说，

"Wouldn't it be great if it did?"

“真能这样，难道不会更好么？”

And we did it.

于是我们怀孕了。

Not in order to spite cancer,

并不是为了跟癌症斗争，

but because we were learning

而是因为我们学会了

that living fully means accepting suffering.

有意义的生活，包括了接受苦难。

Paul's oncologist tailored his chemo

Paul的肿瘤医生适量减少了 他化疗的剂量

so he could continue working as a neurosurgeon,

这样他依然可以从事 神经外科手术，

which initially we thought was totally impossible.

这在一开始我们觉得是 完全不可能的。

When the cancer advanced

当癌症进一步加重时

and Paul shifted from surgery to writing,

Paul放下了手术刀，拿起了笔，

his palliative care doctor prescribed a stimulant medication

他的姑息疗法医生给他开了 兴奋类的药物，

so he could be more focused.

这样他可以更加专注。

They asked Paul about his priorities and his worries.

他们询问了Paul在意的事情 和担心的事情。

They asked him what trade-offs he was willing to make.

他们询问了他在一些问题上的取舍。

Those conversations are the best way to ensure

这些谈话是确保你的医疗计划

that your health care matches your values.

符合你的预期的最好方式。

Paul joked that it's not like that "birds and bees" talk

Paul开玩笑说， 这跟你的父母跟你谈论

you have with your parents,

有关性的话题是不一样的，

这种谈话你总想尽早结束，

where you all get it over with as quickly as possible,

然后假装从没发生过。

and then pretend it never happened.

You revisit the conversation as things change.

当事情变化时你会回过头来 回顾这些谈话。

You keep saying things out loud.

你坚持说出真实感受。

I'm forever grateful

我会永远感激

because Paul's clinicians felt

Paul的临床医生们，

that their job wasn't to try to give us answers they didn't have,

他们并不觉得他们的工作 是提供他们不知道的答案

或仅仅是帮我们修复什么东西，

or only to try to fix things for us,

but to counsel Paul through painful choices ...

而是在Paul面对痛苦的选择时 提供咨询建议…

when his body was failing but his will to live wasn't.

他的身体逐渐垮下去的时候， 他的精神依然矍铄。

Later, after Paul died,

在Paul死后，

I received a dozen bouquets of flowers,

我收到了很多花束，

but I sent just one ...

而我送出了一束…

to Paul's oncologist,

给Paul的肿瘤医生，

because she supported his goals

因为她为Paul的目标提供支持

and she helped him weigh his choices.

并帮助他权衡可能的选择。

She knew that living means more than just staying alive.

她知道生活并不仅仅意味着活着。

A few weeks ago, a patient came into my clinic.

几周前，一位患者来到我的诊所。

A woman dealing with a serious chronic disease.

是一位患有严重慢性病的女士。

And while we were talking about her life and her health care,

当我们讨论她的生活和医疗计划时，

she said, "I love my palliative care team.

她提到，“我爱我的姑息治疗小组。

They taught me that it's OK to say 'no'."

他们让我知道是完全可以说‘不’的。”

Yeah, I thought, of course it is.

对呀，我想，当然了。

But many patients don't feel that.

但是很多患者没有意识到这点。

Compassion and Choices did a study

“热情和选择”组织做过调查，

where they asked people about their health care preferences.

调查内容是询问人们的 医疗健康偏好。

And a lot of people started their answers with the words

很多人开始回答都是以

"Well, if I had a choice ..."

“如果我有选择的话…”开头。

If I had a choice.

如果我有选择。

And when I read that "if,"

但我读到那个“如果”，

I understood better

我更加理解

why one in four people

为什么四分之一的人

receives excessive or unwanted medical treatment,

被过度医疗了，

or watches a family member receive excessive or unwanted medical treatment.

或者目睹家庭成员被过度医疗。

It's not because doctors don't get it.

并不是因为医生不知道。

We do.

我们知道。

We understand the real psychological consequences

我们知道这些对于患者和家庭而言

on patients and their families.

带来的真实的心理上的后果。

The things is, we deal with them, too.

问题是，我们也有困扰要处理。

Half of critical care nurses and a quarter of ICU doctors

一半的重症监护护士和 1/4的ICU医生

have considered quitting their jobs

考虑过换工作，

because of distress over feeling that for some of their patients,

因为有时候他们提供的帮助 并不符合患者的诉求，

they've provided care that didn't fit with the person's values.

这种感觉让他们感觉到很痛苦。

But doctors can't make sure your wishes are respected

但是只有当医生知道 你的愿望究竟是什么，

until they know what they are.

才有可能确认它们得到了尊重。

Would you want to be on life support if it offered any chance of longer life?

你是否愿意通过生命维持装置 延续你的生命？

Are you most worried about the quality of that time,

那时你是否更加关注生活质量，

rather than quantity?

而不是生命的长度？

Both of those choices are thoughtful and brave,

两种选择都是勇敢且睿智的，

but for all of us, it's our choice.

对我们而言，这是我们的选择。

That's true at the end of life

这对于我们的临终医疗

and for medical care throughout our lives.

以及我们日常的医疗服务都是如此。

If you're pregnant, do you want genetic screening?

如果你怀孕了，你想做 基因筛查么？

Is a knee replacement right or not?

要不要更换膝关节？

Do you want to do dialysis in a clinic or at home?

你希望在家还是在诊所 做血液透析？

The answer is:

答案是：

it depends.

看情况。

What medical care will help you live the way you want to?

哪种医疗方案能够帮助你 按你想要的方式生活？

I hope you remember that question

我希望你在下一次面对

the next time you face a decision in your health care.

你的医疗方案问题时， 能够记得这个问题。

Remember that you always have a choice,

记住，你始终可以选择。

and it is OK to say no to a treatment that's not right for you.

而且当医疗方案不适合你时， 你可以说不。

There's a poem by W.S. Merwin --

W.S. Merwin 写过一首诗——

it's just two sentences long --

很短，只有两行——

that captures how I feel now.

描述了我现在的感受。

"Your absence has gone through me

“你的离去，如丝线穿针，

like thread through a needle.

穿过了我。

Everything I do is stitched with its color."

从此我的生活，都是你的色彩。”

For me that poem evokes my love for Paul,

对于我而言，这首诗 激发了我对Paul的爱，

and a new fortitude

带给我新的勇气

that came from loving and losing him.

在我经历对Paul的爱和逝去之后。

When Paul said, "It's going to be OK,"

当Paul说，“一切都会变好的，”

that didn't mean that we could cure his illness.

他并不是说他的癌症能够痊愈。

Instead, we learned to accept both joy and sadness at the same time;

相反，我们学会了接受这段过程中 经历的愉悦和悲伤；

to uncover beauty and purpose

去发现生活的美和意义，

both despite and because we are all born

学会放下，因为我们都会出生，

and we all die.

也都会死去。

And for all the sadness and sleepless nights,

在那些悲伤的不眠之夜，

it turns out there is joy.

我们也找到了一些快乐。

I leave flowers on Paul's grave

我在Paul的坟墓摆上鲜花

and watch our two-year-old run around on the grass.

看着两岁大的孩子 在草地里奔跑玩耍。

I build bonfires on the beach and watch the sunset with our friends.

我在海滩点一堆篝火， 跟朋友看日落。

Exercise and mindfulness meditation have helped a lot.

健身和冥想训练很有帮助。

And someday,

有时候，

I hope I do get remarried.

我确实希望能够再婚。

Most importantly, I get to watch our daughter grow.

最重要的是，我能够 看着女儿一天天长大。

I've thought a lot about what I'm going to say to her

我一直在思考，当她更大一些

when she's older.

如何跟她诉说。

"Cady,

“Cady，

engaging in the full range of experience --

拥抱人生所有的体验——

living and dying,

生与死，

love and loss --

爱与失去——

is what we get to do.

都是我们要经历的。

Being human doesn't happen despite suffering.

身而为人并不能够无视苦难。

It happens within it.

人生伴随着苦难。

When we approach suffering together,

当我们能够一起面对苦难，

when we choose not to hide from it,

当我们选择不再去回避它，

our lives don't diminish,

我们的生活并不会萎缩，

they expand."

而是会得到延伸。”

I've learned that cancer isn't always a battle.

经历过这些我意识到治疗癌症 并不是一场战役。

Or if it is,

如果是的话，

maybe it's a fight for something different than we thought.

那么可能也是一场跟我们 想象的不同的战役。

Our job isn't to fight fate,

我们要做的不是跟命运抗争，

but to help each other through.

而是相互扶持，度过难关。

Not as soldiers

我们不是战士，

but as shepherds.

我们是牧羊人。

That's how we make it OK,

这是我们体会到的变好，

even when it's not.

即使它可能不是。

By saying it out loud,

通过开诚布公，

by helping each other through ...

相互扶持度过这段旅程…

and a gorilla suit never hurts, either.

准备一套大猩猩戏服总没坏处。

Thank you.

谢谢大家。

(Applause)

（掌声）