与极度不确定性共存的勇气 Shekinah Elmore: The courage to live with radical uncertainty

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演员: Shekinah Elmore


台词
What's the worst that could happen?
最糟糕的情况会是什么?
Almost exactly 10 years ago,
大约十年前,
I was sitting in an exam room that was way too cold
我坐在一间很冷的检验室里,
waiting to meet my new oncologist.
等着见我的新肿瘤科医生。
I was terrified.
我很害怕,
Even though my partner at the time was sitting right by my side,
即使我的伴侣就坐在我的身旁,
I felt completely alone.
我仍然感到非常孤独。
I had just been diagnosed with breast cancer,
我刚被诊断出乳癌,
and it seemed at the time
在当时,我右肺部的扫描影像上
that a single bright spot on a scan of my right lung
出现了一个单一的亮点,
meant that the cancer had already spread.
这就意味着癌细胞已经扩散。
I had metastatic breast cancer.
我得的是转移性乳癌。
I had no medical training at this point,
此时的我完全没有受过 这方面的医疗训练,
but I knew what it meant if it were true:
但我知道如果这是真的:
incurable breast cancer.
这将会是无法医治的乳癌。
Terminal breast cancer.
乳癌末期。
I was 27 years old,
那时的我年仅 27 岁,
had just been accepted to medical school,
刚被医学院录取,
and I wondered if I was already at the end of my life.
却不知道自己是否已经 走到了生命的尽头。
My new oncologist was not a warm person.
我的新肿瘤医生 并不是一个温暖的人,
She dealt in simple facts,
她就像许多杰出的医生一样,
as many brilliant physicians do.
只是简单地陈述事实。
"Our body is made up of cells," she started.
她开始说道:"我们的身体 是由许多细胞组成的,”
I stopped her.
我打断了她,
"I'm starting medical school soon.
"我马上要就读医学院了。
I know."
我知道。”
Instead of taking this as a signal to go backward, to start again,
然而,她并没有把这句话 当成重新开始对话的信号,
she went forward.
而是继续说下去。
She said that I would need to start on chemotherapy
她告诉我需要开始做化疗
to control the cancer.
来控制癌症。
She launched into the details of the drug and the side effects
她接着仔细向我说明 药物及其副作用,
and the schedule.
和服用药物的时间表。
I reminded her that we hadn't even yet biopsied the bright spot on my lung,
我提醒她,我们还没有 针对肺部的亮点进行活检,
and I asked if she was sure that it was cancer.
所以我问她是否确定那就是癌症。
I remember viscerally how she seemed almost frustrated with my question.
我记得她似乎对 我的提问而感到生气,
Perhaps she thought I wasn't following along with her explanations,
也许她认为我没有听从她的解释,
or, worse still, I was in denial.
又或者,更糟糕的是, 我不愿面对现实。
I simply wanted her to understand that, as her patient,
我只是希望她能明白,作为她的患者,
the biopsy was not just a mere formality to prove an already foregone conclusion.
活检不只是一个证明 预料之中的结论的形式。
It was a steel needle through skin, muscle and bone
它就如同一支钢针 刺穿皮肤、肌肉和骨头,
that would deliver a deep piece of me to the surface and answer a question
让我深处的疑惑浮出表面,
I wish didn't have to be asked.
解答一个我希望不需要问的问题。
Before the biopsy, I could be a 27-year-old woman
在进行活检之前,我可能只是 一个二十七岁的女人,
who might have metastatic breast cancer,
有可能会得转移性乳癌,
who probably had metastatic breast cancer.
也很有可能已经得了转移性乳癌。
This is a critical distinction,
这两者之间有着很关键的区别,
but it's not one that's emphasized in the most elite oncology training.
但在大部分的精英肿瘤学培训中, 并不会强调这样的区别。
Instead, I was dismissed with an appointment to start treatment
我反而被医生打发走了,
in just a few weeks.
并在这几周内开始接受治疗。
So much has happened since that first visit.
自从第一次造访后, 就开始发生了好多事情。
Ironically, the biopsy was not just a mere formality.
讽刺的是,活检不只是一种形式。
My former oncologist was right.
前一个肿瘤科医生是对的。
(Laughter)
(笑声)
It did show cancer,
检查结果显示的确是肿瘤,
but it was a totally separate lung cancer,
但除了乳癌之外,还有肺癌,
and as crazy as it sounds,
虽然听起来很疯狂,
this was great news.
但这算是天大的好消息了。
I did not have metastatic breast cancer,
我并没有患上转移性乳癌,
I had two different cancers,
我有两种不同的癌症,
but both of them were localized,
但两种都是局部性的,
and so the lung cancer was localized enough
只要肺癌的局部性足够大,
that it could be removed.
那就可以将它切除。
And so the onslaught of treatments began with a lung surgery,
于是,治疗攻势便从肺部手术开始,
continued with chemotherapy
接着是连续的化疗,
and ended with a breast surgery just after my 28th birthday.
最后则是乳房手术, 就在我二十八岁生日之后。
And then two weeks later,
两个礼拜后,
I started medical school.
我开始就读医学院。
My new oncologist --
我的新肿瘤科医生——
(Laughter)
(笑声)
who deals much more fluidly both with facts and their implications,
擅长用流畅的方式 陈述事实和其后果,
very reasonably suggested
非常理性地建议
that I should defer my acceptance to medical school for a year,
我应该延缓医学院入学一年,
take some time to rest, to recover,
多花点时间休息、修养,
and I trusted her advice.
而我听取了她的建议。
I felt terrible during the intensive chemotherapy sessions.
在密集的化疗过程中, 我的心情糟透了。
And so I wrote to the dean.
于是我写信给医学院院长,
I explained my circumstances,
向他解释我的情况,
and a deferral was speedily granted.
于是我的延迟入学申请 马上就获得了批准。
But as the chemo fog lifted,
随着化疗阴影的消散,
I wondered what I was going to do with a year.
我开始思考我这一年的规划,
Should I go to the beach?
我该去海滩吗?
(Laughter)
(笑声)
I wasn't really a beach person.
其实我并不是一个热爱沙滩的人。
(Laughter)
(笑声)
And how many years did I have left, anyway?
然而我还剩下多少年可活?
I really wanted to go to medical school.
我真的很想要去医学院读书。
It seemed like a missing piece of my puzzle.
它就像我人生拼图中缺失的那一块。
So instead of going around and around with indecision,
与其一直摇摆不定,
I asked myself: What's the worst that could happen?
我开始自问: “最糟糕的情况会是什么?”
Well, I could be too weak or too sick to do the work.
我可能会虚弱得无法工作,
It could be too hard for me emotionally.
从情绪上来说,我可能会太辛苦,
I could fail out of medical school.
我也有可能被医学院退学。
But then I remembered, that wouldn't be the worst thing that happened to me
紧接着我就想到,这些对我来说
even that year.
都不会是那年我遇过最糟糕的事情。
So why not get started?
那为何还不开始行动?
Why not continue living the way that I wanted to live?
为何不继续过我想要的生活方式?
So I did.
于是我开始行动起来。
Bald and rail thin,
光头且骨瘦如柴的我
I put on my best earrings and my favorite dress,
戴上了我最好看的耳环, 还穿上了我最喜欢的裙子,
and I started.
就这么开始了。
I pretended to belong,
我假装自己有明确的目标,
and I began to.
也切实地开始寻找。
There is no way to describe how hard it was.
这一路的艰难是无法用言语来形容的。
Some days it felt impossible.
有时候,你会觉得自己办不到。
It felt as if I was doing things that would never matter in the future.
感觉自己在做着 跟未来毫不相关的事情。
But every day, I asked myself: Are you still enjoying this?
即便如此,我每天都会问自己 : “你仍然很享受这一切吗?
Is this still what you want to be doing?
这仍然是你想做的事情吗?”
And every day, the answer was yes,
而每一天的答案都是“是”,
sometimes a very qualified yes,
有时候是有保留的“是”,
but a yes.
但往往都是肯定的。
And then, just as I was getting comfortable
当我越来越适应这样的生活后,
and feeling like I might not necessarily fail out of medical school,
我开始觉得我不见得 会被医学院退学,
I received even more devastating news.
然而我却收到了 更加令我倍受打击的消息。
I learned that I had a mutation in a gene called TP53, or p53 for short.
我得知我体内有一个 TP53, 或简称 p53 的基因发生了突变。
Known as the guardian of the genome,
这个我们所谓的基因守护者,
a mutation --
发生了突变——
p53 is responsible for supervising the repair of our DNA.
p53 负责监督基因的修复。
A mutation in this gene means errors go uncorrected.
当这个基因发生突变, 就表示错误将不会被修正。
It means that normal cells become cancerous at a much higher rate.
这就意味着正常细胞变成 癌细胞的可能性将会大大提高。
All of a sudden, with this knowledge,
突然间收到这个消息,
my medical history made a terrible kind of sense.
再加上我先前的病史, 让我感觉糟糕透了。
I had had a childhood cancer -- rhabdomyosarcoma -- at age seven.
我小时候就得过癌症—— 横纹肌肉瘤——当年的我只有七岁。
It recurred when I was a teenager.
在青春期时它又复发了。
And this was all before p53 had been discovered in the lab.
这些都是在科研人员 发现 p53 之前的事。
Then I'd had young adult breast and lung cancers.
然后,我就在青年时期 患上了乳癌和肺癌。
With the knowledge of this mutation,
当得知发生了基因突变后,
it seemed that there was likely no end
我似乎就能预知,
to the number of cancers that I could expect in my future.
自己在未来将会无止境地罹患癌症。
And yet,
然而,
I decided to become a radiation oncologist.
我依然决定成为 一位放射科肿瘤医生。
(Laughter)
(笑声)
I hoped to graduate from residency in just a few months,
我希望我能在几个月内完成实习,
move to a new city
搬到一个新的城市,
and start my first real job as a doctor and researcher,
以医生兼研究者的身份 开始我的第一份工作——
because of grit,
因为毅力,
because of privilege,
因为殊荣,
because of therapy,
因为治疗,
because of my medical teams and my family and my teachers,
因为我的医疗团队、 我的家人、我的老师,
because genetic diagnoses should give us the knowledge
因为基因诊断应该带给我们
to move forward.
向前迈进的知识。
And even in the year 2020,
即使在 2020 年,
that generally doesn't mean miracle cures or medical breakthroughs.
也并不代表会出现 奇迹般的治愈或是医学突破。
Having a devastating genetic diagnosis
听到令人大受打击的基因诊断结果,
means learning to live with uncertainty.
让我学会了接受 充满不确定性的生活。
It means learning that you and your diagnosis
这也意味着 了解你和你的诊断结果,
are not the worst thing that could happen.
并不是最糟糕的情况。
Learning to live with uncertainty
学习接受充满不确定性的生活
means walking forward into a life
同时也意味着朝着
that is as full of beauty as it is of challenges.
一种挑战和美好并存的人生。
It means learning for yourself that cancer is just part of your story.
要学会告诉你自己, 癌症只是你故事中的一部分,
It may not be the worst thing that happens to you,
它不会是你遇过的最糟糕的事情,
and if it is, that's OK.
就算是,那也没关系。
You can claim that, and you can own that,
你可以大方承认并接受事实,
but let that be a narrative that you author and you authorize,
让它成为你自己创作且授权的作品,
not one that's prescribed to you by someone else.
而不是由别人指派给你的。
Have your deferral letter in hand, but use it on your terms.
手里拿着延迟入学信, 至于用不用它完全取决于你自己。
As I come to the end of my oncology training,
在我快要完成肿瘤学训练的时候,
I have déjà vu again and again with the following scenario:
我一而再再而三地 碰到似曾相识的情景:
A patient has cancer.
一个癌症患者,
There are several options,
面临着几项选择,
all of which offer a different balance between cure and quality of life,
它们提供了治疗和生活质量之间 不同程度的平衡,
between the possibility of alleviating suffering
试图在可能减轻痛苦
and the possibility of causing suffering.
和造成痛苦之间达到平衡。
An oncologist lays out the options,
一位肿瘤科医生列出了几项选择,
but, somewhere in the discussion, things get skewed.
但却在讨论过程中偏离了主题。
The choice becomes something more like,
选择都变成了:
"Well, you could choose to do something,
“你可以选择做点什么,
or you could choose to do nothing.
或者选择什么都不做。
We could be aggressive, and treat your cancer,
我们可以积极治疗你的癌症,
or we could watch it."
或者置之不理。”
And 9.9 times out of 10, the patient says,
10 个病人中有 9.9 个都会说:
"I want to do everything I can do."
“什么我都愿意做。”
Of course.
当然。
Who wouldn't want everything?
谁不会想要一切呢?
But what is everything?
但什么是一切呢?
Is everything the ability to sit in your own home in front of your window
一切是指你有能力 坐在家中的窗户旁,
bathed in sunshine and surrounded by family?
沐浴在阳光下,身旁有家人的陪伴?
Is everything still being able to feel your fingers and your toes,
还是指你还能感受到你的手指和脚趾,
because they haven't gone numb from chemotherapy?
因为它们并没有 因化疗而变得麻木?
As oncologists, our everything is cancer treatment.
身为肿瘤科医生, 我们的一切工作都围绕着癌症治疗,
It's radiation and surgery and chemotherapy and novel treatments.
包括放射、手术、化疗, 和新颖的治疗方式。
And for us, the worst thing that could happen --
对于我们而言,最糟糕的事情——
and I have heard more than one oncologist say this --
而且我听过不只一位 肿瘤科医生说过——
the worst thing that could happen
最糟糕的事情莫过于
is that the patient will develop metastatic disease.
病人发展出了转移性疾病。
Or, the worst thing that could happen is that five years from now,
又或者,最糟糕的事情 就是现在起的五年后,
the cancer will grow, and I'll have to give more radiation.
癌变范围不断地扩大,而我得为 更多的病人提供放射性治疗。
As a patient and as an oncologist,
身为患者与肿瘤科医生,
I would never argue that these are not devastating outcomes.
我绝对不会否认这些都是 令人备受打击的结果。
But are they the worst?
然而,它们真的是最糟糕的吗?
Should cancer control
我们的思想应该一直以
be at the center of our thinking, always?
控制癌症为中心吗?
Many unspeakably, unfathomably painful and brutal things have happened to me
许多无法言语、无法理解的痛苦, 且残忍的事情都接二连三地发生在我身上,
because of my cancers and my genetic mutation.
全是因为我的癌症和基因突变。
And yet, I consider myself very lucky indeed,
虽然如此,我还是认为 自己是个幸运的人,
because the worst thing that could happen never came to pass;
因为最糟糕的事情始终没有到来;
because I have let devastation and uncertainty sit at the table,
因为我让打击和不确定性 融入了我的人生,
but somewhere off to the side.
但没有让它们阻挡我前进的道路。
When I was diagnosed with metastatic breast cancer,
在被诊断出转移性乳癌之后,
I went to Boston for a second opinion, because what could I lose?
我前往波士顿进行了二次检查, 因为我已经没有什么可失去的了。
When my oncologist gave me very good and very safe
当我的肿瘤科医生给了我 非常好、非常安全,
and very standard advice,
且非常标准的建议,
I started medical school anyway,
我就开始就读医学院,
even though I was undergoing active cancer treatment.
即使我还在接受癌症治疗。
Instead of shying away from patients with cancer,
与其一直试图远离癌症病患,
I became a radiation oncologist,
我反而成为了放射性肿瘤科医生。
and I work with patients who are very much like me
我每天都在工作岗位上接触到
every single day.
和我非常像的病人。
Instead of imagining the suffering that I might cause to a future partner
我并没有去想象,如果我死于癌症,
when I died of cancer,
会对我的伴侣造成多大的痛苦,
I married my wonderful husband.
因为我嫁给了我完美的丈夫。
Because the worst thing that can happen
所有最糟糕的事情
is always a series of negatives.
向来都是一连串的负面想法。
It's blank spaces
所有的空白区域
that should be filled with life.
都应该被生活填满。
So what is the most that I have leaned in to this kind of radical uncertainty?
那么在这场充满不确定性的生活里, 我最依赖的是什么?
Well, this is William.
这是威廉。
He is the most joyful person that I have ever met,
他是我见过的最快乐的人,
and in just over a year, he has already made the world a better place.
在仅仅一年多的时间里, 他就已经让我的世界变得更美好。
As oncologists, we talk to our patients
作为肿瘤科医生,我们常和病患说,
as if the worst thing that could happen
最糟糕的情况莫过于
is that their cancer could come back,
癌症复发,
or that it could spread, or that they could die from it.
或者是癌症扩散, 又或者会因癌症而死去。
As a patient, I know that these are paramount.
作为一个病人,我知道 这些都是最重要的。
But I want to change the way that we think about this,
但我仍然想改变 我们在这方面的想法,
and I want to change the way that we talk about this with our patients.
我想要改变我们和病人交谈的方式。
As a patient,
身为一个病人,
the worst thing that can happen is that cancer robs you of opportunity,
最糟糕的事情就是 癌症夺走了你的机会,
of the ability to be
夺走你活下去的能力,
and to do
夺走你做事情的能力、
and to love.
更夺走了你去爱的能力。
And it will.
它的确会夺走这些,
At least temporarily it will.
至少是暂时性的。
But to minimize this loss of life in the living,
但我想说的是,把患者 生命中的损失降到最小,
that is the harder, and I would say, truer job of the oncologist:
是肿瘤科医生最困难, 也是最真实的工作:
to take all the tools that we have and situate them in the context
拿出我们所有的工具,
of a patient's whole entire life;
把它们用在病人的一生中;
to be guides for how to sit with suffering,
引导他们如何应对痛苦,
acknowledge it deeply,
在内心深处接受它,
but to not let fear of future suffering be the narrative for the journey forward.
但不要让前进的旅程充满 对未来痛苦的恐惧。
One of my mentors always says the medicine part is easy.
我的一位导师总说, 医学部分是简单的,
And it never feels that way to a junior doctor,
但对于新手医生来说, 从来都不是那回事,
but its contours are finite.
但它的难度是有限的。
We have big studies to guide us, and it's what we learn to do in residency.
我们有大量的研究来引导我们, 这也是我们在实习期间所学会的。
Much harder is learning how to help each patient navigate the multitudes
更困难的是学习如何帮助每位病人
contained in their illness.
在多重病痛中找到方向。
So I find it really funny that, in retrospect,
回想起来,我觉得最有趣的是,
my life looks like a neat package.
我的人生看起来就像 一系列井然有序的计划。
It looks as if I planned each successive step
看起来就像我规划着 成功的每一步,
and that perhaps cancer has led to the good things in my life.
也有可能是癌症带来了 我人生中的美好。
Step one: apply to medical school.
第一步:申请医学院。
Step two: get diagnosed with and treated for cancer.
第二步:被诊断出癌症并接受治疗。
And step three: have it all,
第三步:心想事成,
a career and a family.
事业家庭两得意。
But I will tell you
但我想告诉你的是,
that each phase was a leap of faith
每个人生阶段都是信念的飞跃,
despite an almost paralyzing uncertainty.
而不是一味气馁地面对不确定性。
And so it's that courage
而我想把这样的勇气
that I try to give to each of my patients.
给予我的每一位病人。
I try to do this regardless of the technical medical details
我尝试不在意
of cancers and treatment decisions
癌症治疗技术层面的细节、
and mutations,
方案,以及突变,
regardless of the slippery fiction
不去在意预后的
of prognosis.
不确定性。
I try to learn what they want
我试着去了解他们想要什么、
and what they need,
他们需要什么,
what they wish and what they worry,
他们希望什么、他们担心什么,
what they dream about,
他们梦想着什么,
what animated them before
之前带给他们的动力是什么,
and what will sustain them during the beastly process of cancer treatment.
而这份动力将转化为支持他们 迎接癌症治疗的力量。
It doesn't actually take that much time.
其实这样的做法并不会很耗时。
It does take a few focused, quiet moments
这的确需要投入一点 专注、安静的时刻,
that require intentional cultivation.
而这些时刻是需要刻意营造的。
But this is partnership,
但这种配合
and it matters,
是有意义的,
because the worst thing that can happen
因为最糟糕的事情
is to have an oncologist who does everything -- everything --
就是一位肿瘤科医生竭尽全力
to help cure your cancer
去医治你的癌症,
and who does nothing
却完全不在意
to help you live your life.
是否能帮助你活出自己的人生。
Thank you.
谢谢。
(Applause)
(掌声)