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【公开课】在苦难面前,怎样生活才更有意义?

发布者: 千缘 | 发布时间: 2020-3-26 01:41| 查看数: 65| 评论数: 0|帖子模式

生而为人,苦难随时都有可能发生在我们身边。我们要做的并不是无视它,而是学会接受并与之共存。本期TED演讲者Lucy Kalanithi分享了她与亡夫的故事,探讨了生命的意义。“拥抱生命带给我们的所有体验一一生与死,爱与失去一一是我们必然要经历的。”



A few days after my husband Paul was diagnosed with stage IV lung cancer, we were lying in our bed at home, and Paul said, "It's going to be OK." And I remember answering back, "Yes. We just don't know what OK means yet."

就在我的丈夫Paul被确诊为肺癌晚期的几天后,我们躺在卧室里,Paul说,”一切都会变好的。”我记得我回答说,”是的。””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. He was smart and kind and super funny. He used to keep a gorilla suit in the trunk of his car, and he'd say, "It's for emergencies only."

我跟Paul是在耶鲁医学院读第一年时认识的。他聪明、友善、超级有幽默感。他常年在车里的后备箱放着一件大猩猩服,他说,“以备不时之需。”(笑声)

I fell in love with Paul as I watched the care he took with his patients. He stayed late talking with them, seeking to understand the experience of illness and not just its technicalities. He later told me he fell in love with me when he saw me cry over an EKG of a heart that had ceased beating. We didn't know it yet, but even in the heady days of young love, we were learning how to approach suffering together.

我在目睹了他细心照顾他的患者之后便爱上了他。他跟患者可以聊到很晚,希望能够理解疾病带来的感触,而不仅仅是技术层面的细节。他后来告诉我,从他看到我面对着一份停止跳动的心电图哭泣那刻就爱上我了。我们那时不知道,早在我们尚未坠入爱河之前,我们就已经在学习如何共同承担痛苦。

We got married and became doctors. I was working as an internist and Paul was finishing his training as a neurosurgeon when he started to lose weight. He developed excruciating back pain and a cough that wouldn't go away. And when he was admitted to the hospital, a CT scan revealed tumors in Paul's lungs and in his bones. We had both cared for patients with devastating diagnoses; now it was our turn.

我们结婚了,毕业后都当了医生。我选择了当内科医生,Paul当时即将结束神经外科的训练课程,但·他的体重也开始往下掉。他的后背逐渐开始疼痛,咳嗽总是不见好。当他被收治住院时,CT显示肿瘤已经遍布他的肺和骨头。我们都细心照顾过各种身患重大疾患的病人;现在轮到我们了。

We lived with Paul's illness for 22 months. He wrote a memoir about facing mortality. I gave birth to our daughter Cady, and we loved her and each other. We learned directly how to struggle through really tough medical decisions. The day we took Paul into the hospital for the last time was the most difficult day of my life. When he turned to me at the end and said, "I'm ready," I knew that wasn't just a brave decision. It was the right one. Paul didn't want a ventilator and CPR. In that moment, the most important thing to Paul was to hold our baby daughter. Nine hours later, Paul died.

我们跟Paul的癌症抗争了22个月。他写了一本回忆录,记录面对死亡的感受。我们的女儿Cady顺利出生。我们爱她,爱彼此。我们学会了如何面对各种艰难的医学选择。Paul最后一次收治住院那天,对于我而言是最艰难的一天。当他在最后的时刻,看着我,说,“我准备好了。”我明白,那不仅是勇敢的选择,也是正确的选择。Paul并不想要呼吸机和心肺复苏,在那一刻,对于Paul而言最重要的事情是抱着我们襁褓中的女儿。九个小时之后,Paul走了。

I've always thought of myself as a caregiver -- most physicians do -- and taking care of Paul deepened what that meant. Watching him reshape his identity during his illness, learning to witness and accept his pain, talking together through his choices -- those experiences taught me that resilience does not mean bouncing back to where you were before, or pretending that the hard stuff isn't hard. It is so hard. It's painful, messy stuff. But it's the stuff. And I learned that when we approach it together, we get to decide what success looks like.

我一直认为自己是一名照料者——就像其他医生一样——而照顾Paul的经历让我对于照料者的理解更深刻。目睹他在跟病魔斗争的过程中对自己的重塑,学会见证和接受他的痛苦,跟他一起接受他的选择——这些经历让我学会了坚强并不意味着回到过去的自己,或假装那些很痛苦的事情没什么大不了的。太艰难了。过程充满痛苦,让人伤透脑筋。但是就是这个过程。我知道了当我们一起努力,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, "I want you to get remarried." And I was like, whoa, I guess we get to say anything out loud.

当他的诊断结果出来后,他对我说的第一句话是,“我希望你能再嫁。”我当时想,哇,我觉得我们当时什么都敢说了。(笑声)

It was so shocking and heartbreaking ... and generous, and really comforting because it was so starkly honest, and that honesty turned out to be exactly what we needed. Early in Paul's illness, we agreed we would just keep saying things out loud. Tasks like making a will, or completing our advance directives -- tasks that I had always avoided -- were not as daunting as they once seemed. I realized that completing an advance directive is an act of love -- like a wedding vow. A pact to take care of someone, codifying the promise that til death do us part, I will be there. If needed, I will speak for you. I will honor your wishes. That paperwork became a tangible part of our love story.

非常的震惊,令人心碎——同时也是一种大度,同时也非常舒心,因为我们完全的诚实,这种诚实正是我们最需要的。在Paul患病的早期,我们商量好,我们什么事情都敞开说。像是立遗嘱这样的事情,完成预留医疗指示(ADS)——(译注:丧失主观意识时的医护指示)那些我一直逃避的事情——当真正面对时并没有那么可怕。我意识到预留医疗指示(ADS)是一种爱的举动——就像是婚礼上的誓言。一种照料对方的契约,将誓言铭刻下来直到生死相隔,我永不言弃。我会在需要时为你表达你的意愿。我会完成你的愿望。这个法律文书成为我们爱情故事的见证。

As physicians, Paul and I were in a good position to understand and even accept his diagnosis. We weren't angry about it, luckily, because we'd seen so many patients in devastating situations, and we knew that death is a part of life. But it's one thing to know that; it was a very different experience to actually live with the sadness and uncertainty of a serious illness. Huge strides are being made against lung cancer, but we knew that Paul likely had months to a few years left to live.

作为医生,我跟Paul都有充分的心理准备去理解,甚至接受诊断结果。我们并没有感到愤怒,很幸运,因为我们早就目睹太多危重的病人,我们知道,死,是生命的一部分。但是,大道理谁都知道;当真的自己遇到的时候,亲身经历悲伤和不确定性是完全不同的体验。肺癌的治疗方法效果很好,但是我们知道Paul的预期寿命只有几年,甚至几个月。

During that time, Paul wrote about his transition from doctor to patient. He talked about feeling like he was suddenly at a crossroads, and how he would have thought he'd be able to see the path, that because he treated so many patients, maybe he could follow in their footsteps. But he was totally disoriented. Rather than a path, Paul wrote, "I saw instead only a harsh, vacant, gleaming white desert. As if a sandstorm had erased all familiarity. I had to face my mortality and try to understand what made my life worth living, and I needed my oncologist's help to do so."

在那段时间,Paul记录了他从医生到病人的转变,他谈到了突然感觉自己站在了十字路口,以及他是如何以为自己能看清道路,因为他已经帮助过那么多病人,或许他可以追踪他们的脚步。但是他彻底的迷失了方向。根本不是一条路,Paul写到,“我看到的是只有一片荒芜、空虚、泛着光的白色的沙漠。就像是一场沙尘暴将所有熟悉的东西都刮跑了。我必须面对我将死的事实,尝试搞清楚如何能够活得有意义,我需要我的肿瘤医生帮助我。”

The clinicians taking care of Paul gave me an even deeper appreciation for my colleagues in health care. We have a tough job. We're responsible for helping patients have clarity around their prognoses and their treatment options, and that's never easy, but it's especially tough when you're dealing with potentially terminal illnesses like cancer. Some people don't want to know how long they have left, others do. Either way, we never have those answers. Sometimes we substitute hope by emphasizing the best-case scenario. In a survey of physicians, 55 percent said they painted a rosier picture than their honest opinion when describing a patient's prognosis. It's an instinct born out of kindness. But researchers have found that when people better understand the possible outcomes of an illness, they have less anxiety, greater ability to plan and less trauma for their families.

临床医生们对Paul的照料让我对于我医疗界的同事有了更深的感激。我们的工作很难。我们有责任帮助患者清楚的知道预期后果以及他们治疗的选择,这向来不是简单的事情,尤其是处理癌症等不治之症的时候,选择更加的艰难。有些人愿意不去知道还有多少时日,有的人想知道。无论哪种,我们都不知道答案的。有时候我们会强调最好的可能性,以期让希望显得更大一些。一次面向医生的调查中,55%的医生说当他们跟病人描述预后时,相比于他们真实的意见,他们会尝试说得更有希望一些。这是一种出于本能的友善。但是研究人员发现当患者能够更好的理解疾病的预期后果时,他们的焦虑更少,更有可能好好规划,并可能减少给家庭带来的伤痛。

Families can struggle with those conversations, but for us, we also found that information immensely helpful with big decisions. Most notably, whether to have a baby. Months to a few years meant Paul was not likely to see her grow up. But he had a good chance of being there for her birth and for the beginning of her life. I remember asking Paul if he thought having to say goodbye to a child would make dying even more painful. And his answer astounded me. He said, "Wouldn't it be great if it did?" And we did it. Not in order to spite cancer, but because we were learning that living fully means accepting suffering.

一个家庭在讨论这类话题时可能非常痛苦,但是我们同样发现在做重大决策时真实信息的重要性。最重要的是,要不要生孩子。只有不到一两年的预期寿命意味着Paul无法看到女儿长大。但是他能够有机会看到女儿的出生并在生命开始的时候陪伴左右。我记得问过Paul要跟一个襁褓中的孩子告别会不会让死亡更加痛苦。他的回答震撼了我。他说,“真能这样,难道不会更好么?”于是我们怀孕了。并不是为了跟癌症斗争,而是因为我们学会了有意义的生活,包括了接受苦难。

Paul's oncologist tailored his chemo so he could continue working as a neurosurgeon, which initially we thought was totally impossible. When the cancer advanced and Paul shifted from surgery to writing, his palliative care doctor prescribed a stimulant medication so he could be more focused. They asked Paul about his priorities and his worries. They asked him what trade-offs he was willing to make. Those conversations are the best way to ensure that your health care matches your values. Paul joked that it's not like that "birds and bees" talk you have with your parents, where you all get it over with as quickly as possible, and then pretend it never happened. You revisit the conversation as things change. You keep saying things out loud. I'm forever grateful because Paul's clinicians felt that their job wasn't to try to give us answers they didn't have, or only to try to fix things for us, but to counsel Paul through painful choices ... when his body was failing but his will to live wasn't.

Paul的肿瘤医生适量减少了他化疗的剂量这样他依然可以从事神经外科手术,这在一开始我们觉得是完全不可能的。当癌症进一步加重时Paul放下了手术刀,拿起了笔,他的姑息疗法医生给他开了兴奋类的药物,这样他可以更加专注。他们询问了Paul在意的事情和担心的事情。他们询问了他在一些问题上的取舍。这些谈话是确保你的医疗计划符合你的预期的最好方式。Paul开玩笑说,这跟你的父母跟你谈论有关性的话题是不一样的,这种谈话你总想尽早结束,然后假装从没发生过。当事情变化时你会回过头来回顾这些谈话。你坚持说出真实感受。我会永远感激Paul的临床医生们,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,而是在Paul面对痛苦的选择时提供咨询建议…他的身体逐渐垮下去的时候,他的精神依然矍铄。

Later, after Paul died, I received a dozen bouquets of flowers, but I sent just one ... to Paul's oncologist, because she supported his goals and she helped him weigh his choices. She knew that living means more than just staying alive.

在Paul死后,我收到了很多花束,而我送出了一束…给Paul的肿瘤医生,因为她为Paul的目标提供支持并帮助他权衡可能的选择。她知道生活并不仅仅意味着活着。

A few weeks ago, a patient came into my clinic. A woman dealing with a serious chronic disease. And while we were talking about her life and her health care, she said, "I love my palliative care team. They taught me that it's OK to say 'no'." Yeah, I thought, of course it is. But many patients don't feel that. Compassion and Choices did a study where they asked people about their health care preferences. And a lot of people started their answers with the words "Well, if I had a choice ..." If I had a choice. And when I read that "if," I understood better why one in four people receives excessive or unwanted medical treatment, or watches a family member receive excessive or unwanted medical treatment. It's not because doctors don't get it. We do. We understand the real psychological consequences on patients and their families. The things is, we deal with them, too. Half of critical care nurses and a quarter of ICU doctors have considered quitting their jobs because of distress over feeling that for some of their patients, they've provided care that didn't fit with the person's values. But doctors can't make sure your wishes are respected until they know what they are.

几周前,一位患者来到我的诊所。是一位患有严重慢性病的女士。当我们讨论她的生活和医疗计划时,她提到,“我爱我的姑息治疗小组。他们让我知道是完全可以说‘不’的。”对呀,我想,当然了。但是很多患者没有意识到这点。“热情和选择”组织做过调查,调查内容是询问人们的医疗健康偏好。很多人开始回答都是以“如果我有选择的话…”开头。如果我有选择。但我读到那个“如果”,我更加理解为什么四分之一的人被过度医疗了,或者目睹家庭成员被过度医疗。并不是因为医生不知道。我们知道。我们知道这些对于患者和家庭而言带来的真实的心理上的后果。问题是,我们也有困扰要处理。一半的重症监护护士和1/4的ICU医生考虑过换工作,因为有时候他们提供的帮助并不符合患者的诉求,这种感觉让他们感觉到很痛苦。但是只有当医生知道你的愿望究竟是什么,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? Are you most worried about the quality of that time, rather than quantity? Both of those choices are thoughtful and brave, but for all of us, it's our choice. That's true at the end of life and for medical care throughout our lives. If you're pregnant, do you want genetic screening? Is a knee replacement right or not? Do you want to do dialysis in a clinic or at home? The answer is: it depends. What medical care will help you live the way you want to? I hope you remember that question the next time you face a decision in your health care. Remember that you always have a choice, and it is OK to say no to a treatment that's not right for you.

你是否愿意通过生命维持装置延续你的生命?那时你是否更加关注生活质量,而不是生命的长度?两种选择都是勇敢且睿智的,对我们而言,这是我们的选择。这对于我们的临终医疗以及我们日常的医疗服务都是如此。如果你怀孕了,你想做基因筛查么?要不要更换膝关节?你希望在家还是在诊所做血液透析?答案是:看情况。哪种医疗方案能够帮助你按你想要的方式生活?我希望你在下一次面对你的医疗方案问题时,能够记得这个问题。记住,你始终可以选择。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 -- it's just two sentences long -- that captures how I feel now. "Your absence has gone through me like thread through a needle. Everything I do is stitched with its color." For me that poem evokes my love for Paul, and a new fortitude that came from loving and losing him.

W.S.Merwin写过一首诗——很短,只有两行——描述了我现在的感受。“你的离去,如丝线穿针,穿过了我。从此我的生活,都是你的色彩。”对于我而言,这首诗激发了我对Paul的爱,带给我新的勇气在我经历对Paul的爱和逝去之后。

When Paul said, "It's going to be OK," that didn't mean that we could cure his illness. Instead, we learned to accept both joy and sadness at the same time; to uncover beauty and purpose both despite and because we are all born and we all die. And for all the sadness and sleepless nights, it turns out there is joy. I leave flowers on Paul's grave and watch our two-year-old run around on the grass. I build bonfires on the beach and watch the sunset with our friends. Exercise and mindfulness meditation have helped a lot. And someday, I hope I do get remarried.

当Paul说,“一切都会变好的,”他并不是说他的癌症能够痊愈。相反,我们学会了接受这段过程中经历的愉悦和悲伤;去发现生活的美和意义,学会放下,因为我们都会出生,也都会死去。在那些悲伤的不眠之夜,我们也找到了一些快乐。我在Paul的坟墓摆上鲜花看着两岁大的孩子在草地里奔跑玩耍。我在海滩点一堆篝火,跟朋友看日落。健身和冥想训练很有帮助。有时候,我确实希望能够再婚。

Most importantly, I get to watch our daughter grow. I've thought a lot about what I'm going to say to her when she's older. "Cady, engaging in the full range of experience -- living and dying, love and loss -- is what we get to do. Being human doesn't happen despite suffering. It happens within it. When we approach suffering together, when we choose not to hide from it, our lives don't diminish, they expand."

最重要的是,我能够看着女儿一天天长大。我一直在思考,当她更大一些如何跟她诉说。“Cady,拥抱人生所有的体验——生与死,爱与失去——都是我们要经历的。身而为人并不能够无视苦难。人生伴随着苦难。当我们能够一起面对苦难,当我们选择不再去回避它,我们的生活并不会萎缩,而是会得到延伸。”

I've learned that cancer isn't always a battle. Or if it is, maybe it's a fight for something different than we thought. Our job isn't to fight fate, but to help each other through. Not as soldiers but as shepherds. That's how we make it OK, even when it's not. By saying it out loud, by helping each other through ... and a gorilla suit never hurts, either.

经历过这些我意识到治疗癌症并不是一场战役。如果是的话,那么可能也是一场跟我们想象的不同的战役。我们要做的不是跟命运抗争,而是相互扶持,度过难关。我们不是战士,我们是牧羊人。这是我们体会到的变好,即使它可能不是。通过开诚布公,相互扶持度过这段旅程…准备一套大猩猩戏服总没坏处。

Thank you.

谢谢大家。



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