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

譯者: Chia-Ying Chiu 審譯者: Marssi Draw

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

當我先生保羅被診斷出 第四期肺癌的幾天後，

we were lying in our bed at home,

我們在家，躺在床上，

and Paul said,

保羅跟我說：

"It's going to be OK."

「一切都會沒事的。」

And I remember answering back,

然後我記得我回應他：

"Yes.

「沒事的。」

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

那時的我們並不知道 「沒事」意味著什麼。

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

我剛認識保羅時， 我們都是耶魯醫學系新生。

He was smart and kind and super funny.

當時的他聰明、善良， 而且相當風趣。

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

他會把大猩猩的人偶服放在後車廂，

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

然後說：「這是以備不時之需。」

(Laughter)

（笑聲）

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

我愛上保羅， 因為他是如此細心地照顧病人；

He stayed late talking with them,

他願意花很多時間陪病人聊天，

seeking to understand the experience of illness

耐心地去了解病人的感受，

and not just its technicalities.

而不只是提供專業的醫療照護。

He later told me he fell in love with me

後來，他說當他看到我 因心臟停止的心電圖而哭泣，

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

他便愛上了我。

We didn't know it yet,

當時的我們並不知道，

but even in the heady days of young love,

但是即便在青澀的初戀時期，

we were learning how to approach suffering together.

我們便學著一起度過苦難。

We got married and became doctors.

之後我們結婚，也成了醫生。

I was working as an internist

當我已是一名內科醫生時，

and Paul was finishing his training as a neurosurgeon

保羅正完成他的腦神經外科訓練，

when he started to lose weight.

也是在那個時候， 他的體重開始下降，

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

出現背部劇痛和長期咳嗽的症狀。

And when he was admitted to the hospital,

當他被送進醫院時，

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

電腦斷層掃描顯示

腫瘤在保羅的肺部及骨頭上。

We had both cared for patients with devastating diagnoses;

我和保羅都曾照顧病情嚴重的患者，

now it was our turn.

而現在，輪到我們來照顧自己。

We lived with Paul's illness for 22 months.

我們與病魔對抗了 22 個月，

He wrote a memoir about facing mortality.

保羅寫下面臨死亡的回憶錄。

I gave birth to our daughter Cady,

我生下我們的女兒凱蒂，

and we loved her and each other.

我們愛她也愛著彼此。

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

我們從這個經驗中， 學習做出每個艱難的抉擇。

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

我們最後一次去醫院

was the most difficult day of my life.

是我人生中最難熬的一天。

When he turned to me at the end

當保羅最後看著我，

and said, "I'm ready,"

並說：「我準備好了。」

I knew that wasn't just a brave decision.

我知道這不只是一個勇敢的決定，

It was the right one.

這更是一個正確的選擇。

Paul didn't want a ventilator and CPR.

保羅並不想要使用呼吸器 和施行心肺復甦術。

In that moment,

在那個當下，

the most important thing to Paul

對保羅來說最重要的事

was to hold our baby daughter.

是將我們的女兒擁入懷中。

Nine hours later,

九個小時後，

Paul died.

保羅逝世。

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

我總是將我自己視為照護提供者，

most physicians do --

就像多數的醫生，

and taking care of Paul deepened what that meant.

而照顧保羅的經歷 加深了照護提供者的意義。

Watching him reshape his identity during his illness,

看著他尋思存在的意義，

learning to witness and accept his pain,

我學習直視、接受他的病痛，

talking together through his choices --

並與他討論所有的決定。

those experiences taught me

這所有的經歷教會了我，

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

百折不饒的韌性 不代表恢復到本來的位置，

or pretending that the hard stuff isn't hard.

或佯裝所有的考驗並不難。

It is so hard.

這一切非常難熬，

It's painful, messy stuff.

充滿痛苦且凌亂，

But it's the stuff.

但它是存在的。

And I learned that when we approach it together,

我學到，當我們一起去面對它，

we get to decide what success looks like.

我們就有權決定最好結局的模樣。

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

當保羅知道診斷結果後， 他跟我說：

"I want you to get remarried."

「我要你再婚。」

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

然後我的反應是，哇！ 我猜我們現在什麼都能坦白說囉。

(Laughter)

（笑聲）

It was so shocking

這是如此讓人震驚、

and heartbreaking ...

心碎，

and generous,

展現慷慨無私，

and really comforting

也讓人感到非常安慰，

because it was so starkly honest,

因為那是如此全然的誠實，

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

而誠實正是我們所需要的。

Early in Paul's illness,

保羅病發早期，

we agreed we would just keep saying things out loud.

我們都同意要保持溝通順暢。

Tasks like making a will,

比方寫遺囑

or completing our advance directives --

或預立生前醫囑，

tasks that I had always avoided --

這種我以前都會避免討論的事，

were not as daunting as they once seemed.

其實並不如想像得嚇人。

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

我體悟到預立醫囑 其實是一種愛的表現，

like a wedding vow.

就像結婚誓詞一樣。

A pact to take care of someone,

誓約要照顧好對方，

codifying the promise

信守承諾，

that til death do us part,

就算死亡讓我們分離，

我都會在那裡。

I will be there.

If needed, I will speak for you.

如果需要的話，我會替你發言。

I will honor your wishes.

讓你的心願得到該有的尊重。

That paperwork became a tangible part of our love story.

生前醫囑成了我們感情存在的證明。

As physicians,

身為醫生，

Paul and I were in a good position

我和保羅可以了解並接受診斷結果。

to understand and even accept his diagnosis.

We weren't angry about it,

我們並不因病情而憤怒。

luckily,

我們很幸運，

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

因為我們都曾目睹 許多病人處在這種狀況，

and we knew that death is a part of life.

我們知道死亡是生命的一部分。

But it's one thing to know that;

但有件事大家要了解：

it was a very different experience

面臨死亡是一種非常不同的經驗，

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

活在悲傷與對抗重病的未知中，

Huge strides are being made against lung cancer,

我們積極地對抗肺癌，

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

但我們也知道 保羅只剩幾個月到幾年可活。

During that time,

在那一段時間，

Paul wrote about his transition from doctor to patient.

保羅記下了他從 醫生到病人的角色轉變。

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

他說這感覺像是突然到了十字路口，

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

他以為自己會知道該去的方向；

that because he treated so many patients,

從以前照顧病人的經驗中，

maybe he could follow in their footsteps.

他以為自己能依循前人的腳步。

But he was totally disoriented.

但當時的他完全不知所措。

Rather than a path,

「與其說是一條明確的道路，」

Paul wrote,

保羅寫到，

"I saw instead

「取而代之的，我只看到

only a harsh, vacant, gleaming white desert.

荒蕪、空虛、閃著寒光的白色沙漠。

As if a sandstorm had erased all familiarity.

就像被一場沙塵暴 抹去了所有熟悉的一切。

I had to face my mortality

我必須正視自己的死亡，

and try to understand what made my life worth living,

並試著了解我人生的意義，

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

而我也需要腫瘤醫生的幫助。」

The clinicians taking care of Paul

那些照顧保羅的醫生們

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

使我對醫院裡的同事有更深的感謝。

We have a tough job.

我們有份艱難的工作。

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

我們有責任幫助病人釐清病情，

and their treatment options,

與解釋治療方案。

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

這是非常困難的，

特別是面對像癌症這類 可能無法治癒的疾病。

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

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

有些人不想知道他們還能活多久，

others do.

有些人則想知道。

Either way, we never have those answers.

不論是面對哪種病人， 醫生都沒有確切的答案。

Sometimes we substitute hope

有些時候，醫生會選擇給予希望，

by emphasizing the best-case scenario.

對病患強調最理想的癒後狀況。

In a survey of physicians,

一份針對醫生的問卷中，

55 percent said they painted a rosier picture

55% 的醫生表示在解釋癒後狀況時，

與其誠實地回答，

than their honest opinion

when describing a patient's prognosis.

他們會選擇給予更樂觀的回覆。

It's an instinct born out of kindness.

這是出於人性善的本質。

But researchers have found

但研究人員也發現，

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

當人更正確地理解疾病的預後狀況，

they have less anxiety,

他們的焦慮會減輕，

greater ability to plan

能更好地規劃未來，

and less trauma for their families.

還有減輕對家庭所帶來的傷害。

Families can struggle with those conversations,

討論病情可能會使家人間起爭執，

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

但對我們來說， 有正確的資訊才能做出好的決定。

Most notably,

比方，

whether to have a baby.

要不要生一個孩子。

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

數月或數年意味著 保羅不太可能陪伴孩子長大。

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

但他很有機會能參與孩子的出生，

and for the beginning of her life.

與陪伴她人生最初的一段時間。

I remember asking Paul

我記得我問過保羅，

if he thought having to say goodbye to a child

他是否覺得要跟孩子訣別，

would make dying even more painful.

讓死亡這件事更加痛苦。

And his answer astounded me.

然而他的回答讓我很驚訝，

He said,

他說：

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

「如果會的話不是很好嗎？」

And we did it.

而我們也確實生了一個孩子。

Not in order to spite cancer,

不是為了表示對癌症的不妥協，

but because we were learning

相反地，是因為我們學到：

that living fully means accepting suffering.

充實的生活意味著接受苦難。

Paul's oncologist tailored his chemo

保羅的腫瘤醫生調整了他的化療，

so he could continue working as a neurosurgeon,

所以他能繼續 以腦神經外科醫生的身分工作，

which initially we thought was totally impossible.

這是我們一開始 都認為絕對不可能的。

When the cancer advanced

當癌症發展至晚期，

and Paul shifted from surgery to writing,

保羅將工作從外科醫生轉成了寫作，

his palliative care doctor prescribed a stimulant medication

安寧療護醫生開立興奮劑藥物給他，

so he could be more focused.

如此一來，他就能更專注寫作。

They asked Paul about his priorities and his worries.

醫生們詢問保羅， 他最重要的事與他所擔心的事。

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

他們詢問他願意做什麼樣的取捨。

Those conversations are the best way to ensure

這些對話都是確保

that your health care matches your values.

醫療照顧符合病患的價值觀。

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

保羅開玩笑說，

這和跟父母討論傳宗接代不一樣；

you have with your parents,

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

你會想快速帶過這個話題，

然後假裝這個話題從來沒有出現。

and then pretend it never happened.

You revisit the conversation as things change.

你得反覆思索， 答覆會依時空背景不同而異，

You keep saying things out loud.

你需要一直將想法說出來。

I'm forever grateful

我永遠感激保羅的醫生，

because Paul's clinicians felt

因為他們相信，

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

他們的工作不是 試圖給予不確定的答案，

or only to try to fix things for us,

或只是提供治療，

but to counsel Paul through painful choices ...

而是透過艱難的決定 給予保羅諮商……

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

當他的身體每況愈下， 但他的求生意志並沒有改變。

Later, after Paul died,

後來，保羅逝世後，

I received a dozen bouquets of flowers,

我收到了好多束花，

but I sent just one ...

但我就給一束……

to Paul's oncologist,

給保羅的腫瘤醫生，

because she supported his goals

因為她支持我先生的目標

and she helped him weigh his choices.

並且幫助他權衡他的決定。

She knew that living means more than just staying alive.

她知道活著 不僅僅意味著軀體的存活。

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

數週前，一位病人來我的診所。

A woman dealing with a serious chronic disease.

是一位深受慢性病所苦的婦人。

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

當我們聊她的人生與醫療照護時，

she said, "I love my palliative care team.

她說：「我愛我的安寧療護的團隊。

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

他們告訴我，說『不』是可以的。」

Yeah, I thought, of course it is.

我心想：「當然是這樣啊。」

But many patients don't feel that.

但很多病患並不這麼認為。

Compassion and Choices did a study

幫助臨終病人的組織 「同情與選擇」在研究中

where they asked people about their health care preferences.

詢問人們對醫療照護的偏好，

And a lot of people started their answers with the words

很多人在回答問題前都會說：

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

「這……假如我可以選的話……」

If I had a choice.

假如我可以選的話。

And when I read that "if,"

當我讀到「假如」，

I understood better

我明白了，

why one in four people

為什麼有 25% 的人

receives excessive or unwanted medical treatment,

接受過多或有違自身意願的治療，

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

或目睹親人接受 過多或有違自身意願的治療。

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

這並不是因為醫生們不理解病情，

We do.

我們的確理解，

We understand the real psychological consequences

我們了解疾病對病人 與其家屬心理上的影響。

on patients and their families.

The things is, we deal with them, too.

但是，醫生也面臨著相同的問題。

Half of critical care nurses and a quarter of ICU doctors

半數的重症照護護士 與二成五的加護病房的醫生

have considered quitting their jobs

有過離職的念頭，

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

因為他們對於

提供不符合病人價值的照護服務 感到痛苦。

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

But doctors can't make sure your wishes are respected

但醫生們無法確保 他們尊重你的心願，

until they know what they are.

除非他們知道你的心願是什麼。

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

如果可以享有更長的壽命， 你願意依賴機器過活嗎？

Are you most worried about the quality of that time,

還是比起生命長度， 你更在意生活品質？

rather than quantity?

Both of those choices are thoughtful and brave,

無論哪一種都是深思熟慮 且勇敢的決定，

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

但對每個人來說， 那都是自己的選擇。

That's true at the end of life

不僅在人生的終點，我們要抉擇，

and for medical care throughout our lives.

我們終其一生 都在選擇我們要的醫療照護。

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

假設你懷孕，你希望做基因篩檢嗎？

Is a knee replacement right or not?

換膝關節手術到底是不是對的？

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

你想在家還是在診所做血液透析？

The answer is:

答案是：

it depends.

這得看情況。

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

哪種醫療照護 能讓你過你想要的生活？

I hope you remember that question

我希望你能記住這個問題。

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

下一次當你抉擇醫療照護時，

Remember that you always have a choice,

記得你總是有選擇權，

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

對於不適合你的醫療服務， 你可以說「不」。

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

默溫（W.S. Merwin）有首詩

it's just two sentences long --

只有兩句話，

that captures how I feel now.

但是真實反映了我現在的感觸。

"Your absence has gone through me

「你的不在已穿透了我

like thread through a needle.

像線穿過針。

Everything I do is stitched with its color."

我的行為都縫上了你的色彩。」

For me that poem evokes my love for Paul,

對我而言， 這首詩喚起了我對保羅的愛，

and a new fortitude

和因深愛卻失去他而生的堅毅。

that came from loving and losing him.

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

當保羅說：「一切都會沒事。」

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

並不表示我們能治癒他的疾病。

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

相反的，我們學習同時 接納疾病帶來的喜悅與悲傷，

to uncover beauty and purpose

發掘人生的美好與意義，

both despite and because we are all born

縱使我們都將經歷出生與死亡。

and we all die.

And for all the sadness and sleepless nights,

所有悲傷無眠的夜晚，

it turns out there is joy.

都化成另一種喜悅。

I leave flowers on Paul's grave

我將花放在保羅的墓上，

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

看著我們的兩歲女兒在草地上奔跑。

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

我在海灘搭起營火， 與我們的朋友一起欣賞日落。

Exercise and mindfulness meditation have helped a lot.

運動與正念靜坐對我幫助很大。

And someday,

有些時候，

I hope I do get remarried.

我也會希望自己再婚。

Most importantly, I get to watch our daughter grow.

最重要的是， 我能陪伴我們的女兒成長。

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

我常想當我們的女兒長大 我該如何跟她解釋。

when she's older.

"Cady,

「凱蒂，

engaging in the full range of experience --

多去體驗不同的經歷，

living and dying,

生與死、

love and loss --

愛與失去，

is what we get to do.

都是我們要經歷的。

Being human doesn't happen despite suffering.

生而為人，我們不能避免痛苦，

It happens within it.

人生存在痛苦。

When we approach suffering together,

當我們一起經歷痛苦，

when we choose not to hide from it,

當我們選擇不逃避，

our lives don't diminish,

我們的生命不會因此消逝，

they expand."

生命會延續。」

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

我已學到罹患癌症 並不一定是場戰爭。

Or if it is,

抑或，若它是場戰爭，

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

也許我們都誤解了自己為何而戰。

Our job isn't to fight fate,

我們的目的不是去對抗命運，

but to help each other through.

而是扶持彼此一同度過。

Not as soldiers

我們不是軍人，

but as shepherds.

而是指引者。

That's how we make it OK,

如此我們才能度過困難，

even when it's not.

即便考驗如此艱難。

By saying it out loud,

透過彼此坦誠，

by helping each other through ...

透過互相扶持……

and a gorilla suit never hurts, either.

和一套大猩猩人偶服，

苦難都會度過的。

Thank you.

謝謝。

(Applause)

（掌聲）