【TED】死亡教会我活着的意义

中英文稿

2011年春天， 就像大学毕业典礼 演讲里说的那样， 我做好了面对现实 世界的准备。 我刚刚大学毕业， 搬到了巴黎， 开始了我第一份工作。 我的梦想是成为 一名战地记者， 但现实世界把我 带到了一个 很不一样的矛盾世界。

22岁时， 我被诊断出了白血病。 医生坦白地告诉 我和我的父母， 我有百分之三十五的几率 可以活下去。 我不能理解和接受 那诊断书意味着什么。 但我明白我想象中的世界 已经被动摇。 一夜之间，我失去了 工作，房子，自由， 我变成了病号5624。

在接下来4年里， 我接受了临床化疗， 做了骨髓移植， 医院变成了我家， 还有我的床， 我一直呆着的地方。 自从觉得我的病 再也不会好了， 我接受了这个现实。 我习惯了， 我流利地说着 医学名词， 其他年轻的癌症病人 成了我的朋友， 我收集五颜六色的假发， 把移动点滴架当成滑板。 我甚至改变了成为 战地记者的梦想， 这其实出乎我的意料。 这是从一篇博客开始的， 从我病床记录第一页开始， 它慢慢变成了 纽约时报的一个专栏， 叫做“生命·摧毁”。

但是 --（掌声）

谢谢。

关键是， 我的关注点是活下去。 并且 -- 我要剧透了哈 --

我活了下来。

感谢那些支持过我的人们， 我不仅仅还活着， 而且治好了癌症。

谢谢。

所以当我们有过 这种痛苦的经历后， 别人会对你另眼相看。 他们会告诉你 你的故事多么鼓舞人心。 他们说你是一个战士。 他们叫你英雄， 就好像你踏上了一段 神秘的危险旅程， 经历了各种考验。 克服困难重重凯旋归来， 开始讲述关于自己的传说， 并且因为所见所闻 变得更厉害、勇敢。 这跟我的经历 确实有点类似。

癌症改变了我的生活。 我离开医院， 清楚地认识自己， 知道我想做什么。 现在，每天日出时， 我会喝一大杯芹菜汁， 然后做一个半小时瑜伽。 然后，我会在一张纸上 写下让我感激的50件事， 折成一只纸鹤并让它 从窗户飞出去。

你们相信吗？

我根本不会做 上述的任何事。

我讨厌瑜伽， 也不会折纸鹤。 实际上， 我的癌症经历中最难的 是癌症被治好后的时光。 我们在电影和 Instagram上 看到那些幸存者们的英雄故事 -- 他们都是个谜。 这些描述不仅不现实， 而且很危险。 因为他们掩饰了 康复过程中真实的挑战。

不要误会 -- 我非常感激 有活下来的机会， 我痛苦地意识到 与病魔抗争是 一种大多数人都 没有的幸运。 但我想告诉你们的是， 这种英雄主义的映射和 对持续感激的期待 对努力康复的病人来说， 意味着什么。 因为被治疗好 不意味着康复结束， 而意味着开始。

我永远都不会忘记出院那天， 结束治疗时的感觉。 4年的化疗淡化了 我和男友的感情， 他最近搬出去了。 当我走进家门时， 里面是寂静的。 这只是个开始。 此时我最想打电话的人， 她会明白我说的一切， 是我的朋友梅丽莎。 她是一位病友， 但她三周前去世了。 我站在我家的门廊里， 我想哭。 但我累得哭不出来。 肾上腺素作用褪去， 我感觉心中那个 从我被确诊第一天 支撑我的支架， 忽然坍塌。 在过去1500天里， 我只为一个目标努力： 活下去。 现在目标实现了， 我意识到我不知道 怎么继续活下去。

纸面上看，我痊愈了： 我不再患白血病。 我的血样检查恢复正常， 我不再有异样检查。 对外人来说， 我再也不属于那个 病号的世界了。 但实际上，我从未 感觉痊愈。 我所接受的化疗在我身上 留下了永久的伤疤。 我心想，“什么工作 可以让我在白天睡四个小时， 当我那不奏效的免疫系统 让我去定时接受化疗时？“ 还有那无形的、 疾病留下的 心理印记： 对疾病复发的恐惧， 毫无掩饰的悲伤， 以及创伤后应激障碍 每次对我长达数天，有时数周的折磨。

当我们讲到战争和关押， 我们总谈到重新 融入这个社会。 但当我们说到痛苦的经历， 如疾病时，我们很少那么讲。 因为没有人曾警告过我 重新融入这个社会的困难， 所以我觉得是我的问题。 我感到很惭愧， 很有罪恶感， 并不停提醒自己 我能活下来已经很幸运了， 许多像梅丽莎一样的 病友都没能撑下来。 但无数的日子里，我 悲伤而失落地醒来， 我几乎无法呼吸。 有时我甚至幻想着 又一次生病。 我想告诉你们， 在你二十多岁并单身时， 有更好的事物可以幻想。

但我怀念在医院的时环境。 那里的每一个人都 像我一样脆弱， 但在医院外的健康人群中， 我觉得自己像个冒名顶替者， 不知所措，无法正常运作。 我也怀念我病情 最严重时的清晰感。 直视自己的死亡让我 简化一切其他事物， 重新把注意力集中在 真正重要的事情上。 生病时，我发誓 如果活下来了， 我一定会为了 一个目标而活。 这个目标是好好活着， 过上有冒险精神， 有意义的生活。 但在我痊愈后， 问题变成了：怎么做？ 我27岁，没工作， 没伴侣，没条理。 这时，没有任何 治疗协议或医嘱 指导我前进。

不过我有满满 一收件箱的信息， 来自陌生人。 多年来， 全世界的人们 读到我的专栏， 他们通过信件、 评论和邮件回应。 那是个大杂烩，对作家 来说应该很常见。 我得到了很多自发 而不靠谱的建议， 比如怎样用精油 治好我的癌症。 还有些人问我 内衣码数。 但是 --

总体来说，那些信息 都来自从不同角度 明白我正经历 什么样的痛苦的人们。

我收到一封来自 佛罗里达的信， 那个小女孩也 刚接受化疗， 她的信里有 很多表情贴。 我还收到住在俄亥俄州， 退休艺术史教授霍华德的信， 从他年轻时起， 他一生都与一种罕见的， 令人虚弱的疾病抗争。 还有一封德州的 死囚的来信。 他署名是小GQ -- 是“奎因匪徒”的简称。 他一生从没真正病过。 他每天早上 做1000个俯卧撑。 但他对我在一次 专栏里所描述的 "癌症关押“很有同感， 特别是被困在一个 没什么亮光的小房间里。 “我知道我们处境 大不相同“，他写道， “但死亡的威胁都 潜伏在我们的影子中”。 在刚开始恢复的 那孤独的几个月里， 这些陌生人的声音 成了我的生命线， 从无数经验、背景 完全不同的人 手中发出， 都说着的类似的话： 你可以被 你所遇到的 最坏的事困住， 让它劫持走 你余下的日子， 但你也可以 找办法前进。

我知道我需要改变。 我想重新振作起来， 找到走出困境的办法， 回到正常的世界。 因此我决定踏上一次 真正的旅程 -- 不是可恶的癌症， 也不是那种人们认为我 应该经历的神秘英雄之旅， 而是真正的、 说走就走的旅行。 我把我的东西 放进储物间， 外租了我的公寓， 借了辆车， 说服了一位可爱 但臭烘烘的朋友 跟我一起出门。

我和我的狗奥斯卡， 踏上了15000英里的 环美公路旅行。 路上，我们拜访了那些 写信给我的陌生人。 我需要他们的建议， 并想向他们说谢谢。 我去了俄亥俄州的 退休教授霍华德家过夜。 当我们遭受损失 或不幸时， 会有守卫自己 心灵的冲动。 但霍华德鼓励着我 拥抱未知， 坦然接受新的爱与失。 霍华德的病 从未被治好， 年轻时，他无法 预计自己还能活多久， 但这没有阻止他 走进婚姻的殿堂。 他现在有几个孙子了， 每周还和妻子去 上舞蹈课。 我拜访他们时， 他们最近在庆祝 结婚50周年。 在给我的信里， 他写道， “意义不存在于 物质世界； 它不是晚餐，爵士乐， 鸡尾酒或谈话。 意义是所有东西都 被除去后剩下的一切“。

我去了德州， 拜访了死囚小GQ。 他问我是怎么度过 生病时在医院的 时光的。 我告诉他我变得很擅长 玩Scrabble文字游戏， 他说，“我也是！” 并向我展示， 即使他大部分时候 都被独自关押， 他和他的邻居们 用纸做成桌上游戏， 通过他们的送餐口 发出游戏挑战 -- 这是人类顽强精神和 用创造力的适应环境 的证明。

我的最后一站 是佛罗里达， 我去见了那位给我发了 很多表情贴的女孩。 她的名字是尤妮克， （意译：独特的） 这太理想了，因为她是 我见过的最活泼好奇的人。 我问她下一步想做什么， 她说， “我想上大学，旅行， 吃我从未尝过的奇怪的 食物，比如章鱼， 去纽约拜访你， 然后去露营， 虽然我很怕虫子， 但我还是想去露营”。 我不禁对她 产生一丝敬畏， 她是如此乐观并 对未来如此期待， 即使她经历了那么多。 但就像尤妮克 让我意识到的， 比起生活在 恐惧的阴影里， 希望是危险的。

但我从那次公路旅行 学到的最重要的是， 病人和健康人的区别。 它是不存在的。 他们的边界充满孔洞。 我们的平均寿命越来越长， 我们在那些可以夺取我们 祖父母，甚至父母生命的 疾病和伤害中活下来， 我们中的大多数人在 生病和健康状态之间转换， 生命大部分时间 都活在两者中间。 这些是我们 存在的术语。

现在我想说的是， 那次旅行后， 我觉得我完全康复了。 其实我没有。 但是我一旦 停止希望自己 重新成为被诊断出 白血病前的那个自己， 一旦我学会接受 我的身体和它的极限， 我的确感觉更好了。 最后，我想 窍门应该是： 不再把我们的健康状况 看成由两部分组成， 健康和有疾病的， 好和不好的， 完整和有缺陷的； 不再认为有一个 完美的健康状况 是我们可以达到的； 不要再活在一个 不达到目标就总是不满 的状态下。

我们每一个人都会 有生活被打乱的时候， 无论那是一张诊断书， 还是别的令人心碎、 精神崩溃的事， 我们需要找到一个在 两种状态中间活着的办法， 保持当下的身体和心态。 有时，这需要的只是手工制作 Scrabble的心灵手巧， 或只是简简单单的 家庭给予的爱， 亦或是夜晚在舞厅 翩翩起舞， 甚至是那危险的， 我猜测，有一天会让那个 怕虫子的小女孩去露营 的希望。

如果你能够 做到这一点， 你就已经踏上了 真正的英雄之旅。 你已经达到了 健康的真正目的， 也就是：在最混乱，最丰富， 一切最完整的感觉中活着。

这就是我想分享 的全部了，谢谢。

谢谢。 （掌声）

 

 

It was the spring of 2011, and as they like to say in commencement speeches, I was getting ready to enter the real world. I had recently graduated from college and moved to Paris to start my first job. My dream was to become a war correspondent, but the real world that I found took me into a really different kind of conflict zone.

At 22 years old, I was diagnosed with leukemia. The doctors told me and my parents, point-blank, that I had about a 35 percent chance of long-term survival. I couldn't wrap my head around what that prognosis meant. But I understood that the reality and the life I'd imagined for myself had shattered. Overnight, I lost my job, my apartment, my independence, and I became patient number 5624.

Over the next four years of chemo, a clinical trial and a bone marrow transplant, the hospital became my home, my bed, the place I lived 24/7. Since it was unlikely that I'd ever get better, I had to accept my new reality. And I adapted. I became fluent in medicalese, made friends with a group of other young cancer patients, built a vast collection of neon wigs and learned to use my rolling IV pole as a skateboard. I even achieved my dream of becoming a war correspondent, although not in the way I'd expected. It started with a blog, reporting from the front lines of my hospital bed, and it morphed into a column I wrote for the New York Times, called "Life, Interrupted."

Thank you.

But above all else, my focus was on surviving. And -- spoiler alert --

I did survive, yeah.

Thanks to an army of supportive humans, I'm not just still here, I am cured of my cancer.

Thank you.

So, when you go through a traumatic experience like this, people treat you differently. They start telling you how much of an inspiration you are. They say you're a warrior. They call you a hero, someone who's lived the mythical hero's journey, who's endured impossible trials and, against the odds, lived to tell the tale, returning better and braver for what you're been through. And this definitely lines up with my experience.

Cancer totally transformed my life. I left the hospital knowing exactly who I was and what I wanted to do in the world. And now, every day as the sun rises, I drink a big glass of celery juice, and I follow this up with 90 minutes of yoga. Then, I write down 50 things I'm grateful for onto a scroll of paper that I fold into an origami crane and send sailing out my window.

Are you seriously believing any of this?

I don't do any of these things.

I hate yoga, and I have no idea how to fold an origami crane. The truth is that for me, the hardest part of my cancer experience began once the cancer was gone. That heroic journey of the survivor we see in movies and watch play out on Instagram -- it's a myth. It isn't just untrue, it's dangerous, because it erases the very real challenges of recovery.

Now, don't get me wrong -- I am incredibly grateful to be alive, and I am painfully aware that this struggle is a privilege that many don't get to experience. But it's important that I tell you what this projection of heroism and expectation of constant gratitude does to people who are trying to recover. Because being cured is not where the work of healing ends. It's where it begins.

I'll never forget the day I was discharged from the hospital, finally done with treatment. Those four years of chemo had taken a toll on my relationship with my longtime boyfriend, and he'd recently moved out. And when I walked into my apartment, it was quiet. Eerily so. The person I wanted to call in this moment, the person who I knew would understand everything, was my friend Melissa. She was a fellow cancer patient, but she had died three weeks earlier. As I stood there in the doorway of my apartment, I wanted to cry. But I was too tired to cry. The adrenaline was gone. I had felt as if the inner scaffolding that had held me together since my diagnosis had suddenly crumbled. I had spent the past 1,500 days working tirelessly to achieve one goal: to survive. And now that I'd done so, I realized I had absolutely no idea how to live.

On paper, of course, I was better: I didn't have leukemia, my blood counts were back to normal, and the disability checks soon stopped coming. To the outside world, I clearly didn't belong in the kingdom of the sick anymore. But in reality, I never felt further from being well. All that chemo had taken a permanent physical toll on my body. I wondered, "What kind of job can I hold when I need to nap for four hours in the middle of the day? When my misfiring immune system still sends me to the ER on a regular basis?" And then there were the invisible, psychological imprints my illness had left behind: the fears of relapse, the unprocessed grief, the demons of PTSD that descended upon me for days, sometimes weeks.

See, we talk about reentry in the context of war and incarceration. But we don't talk about it as much in the context of other kinds of traumatic experiences, like an illness. Because no one had warned me of the challenges of reentry, I thought something must be wrong with me. I felt ashamed, and with great guilt, I kept reminding myself of how lucky I was to be alive at all, when so many people like my friend Melissa were not. But on most days, I woke up feeling so sad and lost, I could barely breathe. Sometimes, I even fantasized about getting sick again. And let me tell you, there are so many better things to fantasize about when you're in your twenties and recently single.

But I missed the hospital's ecosystem. Like me, everyone in there was broken. But out here, among the living, I felt like an impostor, overwhelmed and unable to function. I also missed the sense of clarity I'd felt at my sickest. Staring your mortality straight in the eye has a way of simplifying things, of rerouting your focus to what really matters. And when I was sick, I vowed that if I survived, it had to be for something. It had to be to live a good life, an adventurous life, a meaningful one. But the question, once I was cured, became: How? I was 27 years old with no job, no partner, no structure. And this time, I didn't have treatment protocols or discharge instructions to help guide my way forward.

But what I did have was an in-box full of internet messages from strangers. Over the years, people from all over the world had read my column, and they'd responded with letters, comments and emails. It was a mix, as is often the case, for writers. I got a lot of unsolicited advice about how to cure my cancer with things like essential oils. I got some questions about my bra size. But mostly --

mostly, I heard from people who, in their own different way, understood what it was that I was going through.

I heard from a teenage girl in Florida who, like me, was coming out of chemo and wrote me a message composed largely of emojis. I heard from a retired art history professor in Ohio named Howard, who'd spent most of his life struggling with a mysterious, debilitating health condition that he'd had from the time he was a young man. I heard from an inmate on death row in Texas by the name of Little GQ -- short for "Gangster Quinn." He'd never been sick a day in his life. He does 1,000 push-ups to start off each morning. But he related to what I described in one column as my "incanceration," and to the experience of being confined to a tiny fluorescent room. "I know that our situations are different," he wrote to me, "But the threat of death lurks in both of our shadows." In those lonely first weeks and months of my recovery, these strangers and their words became lifelines, dispatches from people of so many different backgrounds, with so many different experiences, all showing me the same thing: you can be held hostage by the worst thing that's ever happened to you and allow it to hijack your remaining days, or you can find a way forward.

I knew I needed to make some kind of change. I wanted to be in motion again to figure out how to unstuck myself and to get back out into the world. And so I decided to go on a real journey -- not the bullshit cancer one or the mythical hero's journey that everyone thought I should be on, but a real, pack-your-bags kind of journey. I put everything I owned into storage, rented out my apartment, borrowed a car and talked a very a dear but somewhat smelly friend into joining me.

Together, my dog Oscar and I embarked on a 15,000-mile road trip around the United States. Along the way, we visited some of those strangers who'd written to me. I needed their advice, also to say to them, thank you. I went to Ohio and stayed with Howard, the retired professor. When you've suffered a loss or a trauma, the impulse can be to guard your heart. But Howard urged me to open myself up to uncertainty, to the possibilities of new love, new loss. Howard will never be cured of illness. And as a young man, he had no way of predicting how long he'd live. But that didn't stop him from getting married. Howard has grandkids now, and takes weekly ballroom dancing lessons with his wife. When I visited them, they’d recently celebrated their 50th anniversary. In his letter to me, he'd written, "Meaning is not found in the material realm; it's not in dinner, jazz, cocktails or conversation. Meaning is what's left when everything else is stripped away."

I went to Texas, and I visited Little GQ on death row. He asked me what I did to pass all that time I'd spent in a hospital room. When I told him that I got really, really good at Scrabble, he said, "Me, too!" and explained how, even though he spends most of his days in solitary confinement, he and his neighboring prisoners make board games out of paper and call out their plays through their meal slots -- a testament to the incredible tenacity of the human spirit and our ability to adapt with creativity.

And my last stop was in Florida, to see that teenage girl who'd sent me all those emojis. Her name is Unique, which is perfect, because she's the most luminous, curious person I've ever met. I asked her what she wants to do next and she said, "I want to go to college and travel and eat weird foods like octopus that I've never tasted before and come visit you in New York and go camping, but I'm scared of bugs, but I still want to go camping." I was in awe of her, that she could be so optimistic and so full of plans for the future, given everything she'd been through. But as Unique showed me, it is far more radical and dangerous to have hope than to live hemmed in by fear.

But the most important thing I learned on that road trip is that the divide between the sick and the well -- it doesn't exist. The border is porous. As we live longer and longer, surviving illnesses and injuries that would have killed our grandparents, even our parents, the vast majority of us will travel back and forth between these realms, spending much of our lives somewhere between the two. These are the terms of our existence.

Now, I wish I could say that since coming home from my road trip, I feel fully healed. I don't. But once I stopped expecting myself to return to the person I'd been pre-diagnosis, once I learned to accept my body and its limitations, I actually did start to feel better. And in the end, I think that's the trick: to stop seeing our health as binary, between sick and healthy, well and unwell, whole and broken; to stop thinking that there's some beautiful, perfect state of wellness to strive for; and to quit living in a state of constant dissatisfaction until we reach it.

Every single one of us will have our life interrupted, whether it's by the rip cord of a diagnosis or some other kind of heartbreak or trauma that brings us to the floor. We need to find ways to live in the in-between place, managing whatever body and mind we currently have. Sometimes, all it takes is the ingenuity of a handmade game of Scrabble or finding that stripped-down kind of meaning in the love of family and a night on the ballroom dance floor, or that radical, dangerous hope that I'm guessing will someday lead a teenage girl terrified of bugs to go camping.

If you're able to do that, then you've taken the real hero's journey. You've achieved what it means to actually be well, which is to say: alive, in the messiest, richest, most whole sense.

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

Thank you. (Applause)