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在军队中，跨性别士兵正面临新的打压。
In the military, transgender troops face a new crackdown.
在我的内心，我知道自己并没有做错什么。
Like in my head, I know I'm doing nothing wrong.
我感觉自己在隐藏什么，但我不应该隐藏它。
I feel like I'm hiding something, but I shouldn't have to hide it.
在周日专题报道中，探讨特朗普政府如何驱逐跨性别服役人员，以及这可能对任务准备度造成的影响。
On the Sunday story, how Trump administration is pushing out trans service members and what this could mean for mission readiness.
来自《Up First》播客的周日专题报道，请立即在NPR应用中收听。
The Sunday story from the Up First podcast, listen now on the NPR app.
这是《TED电台秀》。
This is the TED Radio Hour.
每周为您呈现突破性的TED演讲。
Each week, groundbreaking TED Talks.
我们现在的任务是大胆梦想。
Our job now is to dream big.
在TED大会上发表。
Delivered at TED conferences.
为了实现我们想要的未来。
To bring about the future we want to see.
遍及全球。
Around the world.
为了理解我们是谁。
To understand who we are.
从这些演讲中，我们为您带来令人惊讶的演讲者和观点。
From those talks, we bring you speakers and ideas that will surprise you.
你根本不知道会发现什么。
You just don't know what you're gonna find.
挑战你。
Challenge you.
我们真的必须
We truly have to
我们自己都会问，为什么这值得注意呢？
ask ourselves, like, why is it noteworthy?
甚至改变你。
And even change you.
我真的感觉自己变成了另一个人。
I literally feel like I'm a different person.
是的。
Yes.
做
Do
你也有这种感觉吗？
you feel that way?
来自TED和NPR的值得传播的思想。
Ideas worth spreading from Ted and NPR.
我是马努什亚·扎莫罗迪。
I'm Manousha Zamorodi.
今天的节目主题是记忆与大脑。
On the show today, memory and the brain.
那是几年前的事了。
So it was a few years ago.
我当时四十多岁，从科德角开车到马萨诸塞州剑桥市做一场演讲。
I was somewhere in my mid forties, and I drove from Cape Cod to Cambridge, Massachusetts to give a talk.
这位是神经科学家兼小说家丽莎·杰诺瓦。
This is neuroscientist and novelist Lisa Genova.
我把车停在了一座停车场，当时有点迟到了。
And I parked my car in a parking garage and I was a little bit late.
我赶时间。
I was running late.
于是我赶紧下车，跑了几条街到现场，做了整整一小时的演讲，签了一些书，一个半小时后就结束了。
So I got out the car quickly, ran off a couple of blocks to the venue, gave my one hour talk, signed some books, and I was done within an hour and a half.
我回到停车场，却想不起把车停在哪里了。
I'm back at the parking garage and I could not remember where I parked my car.
所以我以为我把车停在了三层，但那里找不到。
So I thought I had parked on Level 3, but I couldn't find it there.
所以可能是四层，也可能是五层。
So maybe it was Level 4 or could be Level 5.
我不确定。
I wasn't sure.
于是我来回在坡道上走着。
So I'm walking up and down the ramps.
我穿着高跟鞋。
I'm in heels.
我满头大汗。
I'm sweating.
我很焦虑。
I'm anxious.
我很沮丧。
I'm frustrated.
我按着车钥匙上的按钮，希望看到车灯闪烁或者听到滴滴声。
I'm pressing the button on my car remote, hoping to see the flashing lights or hear a beep beep.
我什么都没看到。
I'm seeing nothing.
我什么都没听到。
I'm hearing nothing.
我开始慌了。
I'm starting to panic.
我心想，剩下的唯一解释就是我的车可能被偷了。
I'm thinking the only explanation left is my car's probably been stolen.
我正准备给一位波士顿警察朋友打电话，问问该怎么办，就在这时，我偶然发现了我的车，它其实就停在三层。
And I'm about ready to call a friend who's a Boston police officer to ask what to do when I finally just randomly happened upon exactly where I had parked it on Level 3.
我情绪崩溃，非常责备自己，想把这段令人沮丧的经历归咎于我的记忆力，但作为神经科学家的我及时醒悟，救了自己。
And so I'm frazzled and I'm so upset with myself and I want to blame this whole frustrating experience on my memory, but the neuroscientist in me stepped in and saved me.
也许你也经历过这样的时刻。
Maybe you've had a moment like this.
丢车、弄丢钥匙、走进一个房间却想不起自己为什么要进来。
Losing your car, misplacing your keys, walking into a room and not remembering what you're there for.
很多
A lot of
在那一刻，我们很多人都会冒出一个令人心悸的想法。
us in that moment might have a heart stopping thought.
出问题了。
Something's wrong.
这不正常。
This isn't normal.
但丽莎说，其实这很正常。
But Lisa says, actually, it is.
我记不起停车位置，其实根本不是记忆出了问题。
Not remembering where I parked my car actually didn't involve my memory at all.
这只是一个分心的问题。
It was an issue of distraction.
因为我没有留意自己把车停在哪里，所以我根本就没有形成关于停车位置的记忆。
Because I didn't pay attention to where I parked, I never formed a memory of where I parked in the first place.
那里存在一种误解，人们期望记忆应该是完美的，我们应该记住一切。
There's this misconception out there, this expectation that memory is supposed to be perfect, that we're supposed to remember everything.
因此，当我们忘记任何事情时，人们就会认为这是衰老、认知障碍或即将患上阿尔茨海默病的征兆。
And so that when we forget anything, people think it's a sign of aging or impairment or impending Alzheimer's.
但其实不然，这不过是拥有一个人类大脑所要付出的代价，而你完全没问题。
But no, this is the price of owning a human brain and you're okay.
所以今天在节目中，我们将与神经科学家兼作家丽莎·杰诺瓦对话，探讨记忆、大脑中什么是正常与不正常的现象，以及我们如何在一生中保持大脑健康。
So today on the show, a conversation with neuroscientist and author Lisa Genova on memory and what's normal and not normal in the brain and what we can do to keep our brains healthy throughout our lives.
所以丽莎多年来一直在实验室研究大脑。
So Lisa was in the lab researching the brain for years.
但在2007年，她走上了一条完全不同的道路——至少对科学家来说是这样。
But in 2007, she veered in a completely different direction, at least for a scientist.
她写了一本名为《依然爱丽丝》的小说。
She wrote a novel called Still Alice.
这是一本关于早发性阿尔茨海默病的书。
It's a book about early onset Alzheimer's.
《依然爱丽丝》成为畅销书，后来被改编成由朱莉安·摩尔主演的电影。
Still Alice became a bestseller and was later adapted into a movie starring Julianne Moore.
从那以后，丽莎又写了四部小说，每部都讲述一个人如何生活并应对不同的神经系统疾病。
Since then, Lisa has written four more novels, each about a person living and coping with a different neurological condition.
不过，她最新的这本书转向了非虚构领域。
Her latest book though is a foray into non fiction.
这本书名为《记忆：记忆的科学与遗忘的艺术》。
It's called Remember, The Science of Memory and the Art of Forgetting.
你知道，我对那些不了解自己大脑使用手册、不了解自己的记忆及其运作方式的人充满同情。
You know, I have a lot of empathy for folks out there who, you know, don't know the owner's manual to their own brains and their their memory and how it works.
所以，我希望这本书能以一种温和、对话式的方式讲述：这就是你的记忆如何运作，它擅长什么，多么了不起。
So, I wanted this book to feel really gentle and conversational about, Okay, here's how your memory works, here's what it's great at, and amazing.
记忆其实是一种非凡的超能力，但它也非常容易出错，而这就是它不擅长的地方。
It's really an incredible superpower, and it's highly fallible, And here's what it's not good at.
那么，我们对它能合理期待什么？又该如何帮助支持它呢？
So what can we reasonably expect of it and how can we help support it?
在你的书中，你写了这句话，我划了线：在大脑所执行的所有复杂而奇妙的奇迹中，记忆是王者。
In your book, you write this sentence that I underlined, which is, of all the complex and wondrous miracles that your brain executes, memory is king.
这句话让我愣了一下，心想：等等。
And that took me, like, for a minute, was like, wait a minute.
真的吗？
Really?
那让我的身体移动四肢的部分呢？
Like, what about the part that can make my body move its limbs?
那呼吸呢？
And what about breathing?
还有大脑能做的其他所有事情呢？
And what about all these other things that my brain can do?
是的。
Yeah.
记忆对我们所做的一切几乎都至关重要。
Memory is essential to the functioning of almost everything we do.
走路需要记忆。
You need memory to walk.
对吧？
Right?
你学会了走路。
You learned how to walk.
你学会的每一件事都是记忆。
Everything you learned how to do is a memory.
所以我们通常认为肌肉记忆是某种东西，很多人觉得肌肉记忆存在于你的肌肉里。
So we tend to think of muscle memory as something, maybe a lot of folks think muscle memory lives in your muscles.
但其实不是，这是一种为打邮件、开车、刷牙、系鞋带等行为所 memorized 的动作编排。
But no, this is the memorized choreography for how to type emails, how to drive the car, to brush your teeth, tie your shoes, and so on.
我们需要记忆来识别生活中的人，我们爱的人，我们的家人、朋友和同事。
We need memory to recognize the people in our lives, the people we love, our family, our friends, our coworkers.
我们需要记忆来认识自己，了解我们生命的历程、你的传记、你的故事，以及昨天或三十年前发生的事。
We need memory to know who we are, the story of our lives, your biography, your narrative, what happened yesterday, thirty years ago.
没有记忆，我们就真正与所经历的生活脱节了。
Without memory, we're really untethered to the life that we live.
让我们谈谈基本原理。
Let's talk about the basics.
因为正如你所说，很少有人真正了解记忆是如何运作的。
Because as you say, like, very few of us even know how memory works.
你在书中让我们想象一枚硬币在脑海中的样子。
And you ask us, in the book to picture a penny in your mind.
你展示了八张不同样式的硬币图片。
And you had eight photos of pennies, and they all look different.
然后你问：哪一个是正确的？
And you were like, which one is the right one?
到底是哪一枚才真正像你钱包里那枚硬币的样子？
What which one really does look like the actual penny that that you probably have in your wallet?
我当时就想，我不知道。
And I was like, I don't know.
我不确定。
I'm not sure.
是的。
Yeah.
所以这令人惊叹。
And so it is astounding.
对吧？
Right?
我想让大家知道，无论你多大年纪，只要你给予正确的输入、使用合适的工具，你的记忆能力都是无限的。
And I want folks to know that, you know, at any age, your memory is limitless in what it can remember if it is given the right kinds of input, if you support it with the right tools.
但无论你是20岁还是70岁，记忆在某些事情上都会非常不可靠，因此我们记不住那些没有留意的事物。
But memory at any age, whether you're 20 or 70, is going to be highly fallible for certain things, and so we can't remember what we don't pay attention to.
除非你是钱币收藏家，否则你不可能记得硬币的每一个细节。
You can't remember what a penny looks like in detail unless you're a coin collector.
除非你研究过这种硬币并留意过这些细节，否则你很可能不知道亚伯拉罕·林肯的头像是朝哪个方向，或者‘自由’这个词在哪里。
Unless you've studied the coin and paid attention to the details, you probably don't really know which way Abe Lincoln's head face is or where the word liberty is.
因为这些细节对你使用和花掉便士来说并不重要，所以你从未注意过，也就从未形成对这些细节的记忆。
Because these details aren't essential for you to be able to use the penny and spend the penny, you never paid attention to it, so you never created a memory for those details.
那我们来谈谈记忆是如何运作的。
So let's talk about how memory functions.
你说要让记忆吸收并保留某些信息，需要经历四个步骤。
You you you say that there are sort of four steps that we have to go through to get memory to take something in and then hold on to it.
你能给我们讲讲基本原理吗？
Can you give us the basics?
是的。
Yeah.
记忆的形成包含四个基本步骤。
So memory creation takes place in four basic steps.
第一步是，你的大脑会接收你所感知并注意的所有视觉、听觉、气味、味道、情绪、语言和意义，并将这些信息全部转化为神经语言。
The first is that your brain takes in all of the sights, the sounds, the smells, the tastes, the emotion, the language, the meaning of whatever you perceived and paid attention to, and translates all of that into neurological language.
所以外界的信息进入你的大脑。
So what's out there gets into your brain.
然后，你的大脑将所有先前无关的神经活动编织成一个相互关联的模式。
Then your brain takes all of that previously unrelated neural activity and weaves it into a single pattern of associated connections.
因此，你的大脑将这些信息连接起来，形成一个神经回路。
So your brain links the information together into a neural circuit.
接下来，你的大脑将这种编织好的神经回路存储为大脑中持久的改变。
Next, your brain then stores this information, this woven neural circuit into lasting alterations in your brain.
所以你的大脑发生了变化。
So your brain changes.
它在神经结构和神经化学上发生了长期稳定的改变。
It changes in neural architecture, changes in neural chemistry that are stable over time.
然后最后一步，也就是第四步，是如果你后来重新激活了这个编织好的回路——无论是明天、下周，还是三十年后——你就能回忆起那段被编织的信息。
And then the last thing that happens, the fourth step, is that if you later activate this woven circuit, either tomorrow or next week or thirty years from now, you can then retrieve that woven information you remember.
我的意思是，这真的很有趣。
I mean, it's really funny.
这让我想起我一直讨厌的一句话。
It makes me think of the phrase that I've always hated.
让我们创造一些回忆吧。
Let's make some memories.
这听起来好像你是在说，你可以做到。
That's always seemed but what you're saying is you can.
我的意思是，你说我们有一些方法，可以更好地编码我们的记忆。
Like, you say that there are ways, things that we can do to sort of better encode our memories.
当然。
Definitely.
我们的人类大脑天生擅长记住那些有意义的、富有情感的、令人惊讶的、新颖的，以及我们反复练习的事情。
So our human brains are designed to remember what is meaningful, emotional, surprising, new, and what we repeat and practice.
而我们会忘记那些不重要的事。
And we forget what isn't.
所以，如果你这么想的话，我们日常生活中充满了大量例行公事、无关紧要的事情。
So, you know, our day if you think about it that way, our day to day lives contain a lot of routine inconsequential things.
对吧？
Right?
所以你起床、洗澡、穿衣、喝咖啡。
So you get up, you shower, you get dressed, you drink coffee.
日复一日，都是老一套。
Same old, same old day after day.
我们记不住那些千篇一律的事情。
We don't remember what's same old, same old.
明白吗？
Okay?
上个星期三你吃的什么午饭？
So what did you have for lunch last Wednesday?
天哪。
Oh, gosh.
我不知道。
I don't know.
我不
I don't
知道。
know.
对吧？
Right?
你可能不记得，因为这都是老样子、老样子。
You don't probably don't remember because it's like same old, same old.
你能告诉我两天前你给谁发了消息，谁给你发了消息吗？
Can you tell me everyone you texted and everyone who texted you two days ago?
天啊。
Gosh.
不行。
No.
我可以去查看并往回翻，那样我会想起来。
I can go look and scroll backwards, that'll remind me.
对。
Right.
但这没关系。
But this is okay.
这并不是我们需要解决的问题。
This is not a problem that we need to fix.
我们的大脑不会记住那些千篇一律、无关紧要的事情。
Our brains don't keep what same old same old inconsequential.
因此，如果我们想更多地记住生活中的事情，或者想记住演讲内容，或者为考试记忆信息，我们该如何让这些信息变得有意义、有情感、令人惊讶、新颖呢？
And so if we wanna remember more of what happened in our lives, or if we wanna remember if we're trying to memorize, you know, a speech, or remember if we're trying to learn information for a test, how can we make that information meaningful, emotional, surprising, new?
但在日常生活中，我们会失去很多东西。
But day to day lives, we lose a lot.
这在某种程度上让我感到难过。
It makes me sad in some ways.
你知道的？
You know?
我的意思是，特别是想到我跟孩子们说话时，他们不会记得我和他们共度的整整几年时光，这让我感到很难过。
It's like I mean, especially it makes me sad thinking that when I talk to my kids, they're not gonna remember entire years of the time that I spent with them.
是的，我知道。
Oh, I know.
这真让人抓狂。
And that's maddening.
这其中一部分原因与我们拥有的长期记忆类型有关。
Some of that has to do with the kinds of long term memory that we have.
我们有肌肉记忆，我已经提到过，这种记忆在时间中非常稳定。
We have muscle memory, which I've already talked about, and that's really stable over time.
这就是常说的，就像骑自行车一样。
That's the expression, you know, it's just like riding a bike.
一旦你学会了某件事，这种记忆就会伴随你一生。
Once you learn how to do something, that memory sticks with you, probably for life.
另一种记忆是语义记忆。
Another kind of memory is semantic memory.
这是关于事实和信息的记忆。
This is the memory for facts and information.
这是你大脑中的维基百科。
This is the Wikipedia of your brain.
你的生日是什么时候？
This is what's your birth date?
你住在哪里？
Where do you live?
06/2006是什么意思？
What's 06/2006?
这种记忆在时间上也非常稳定。
Also really stable over time.
是的。
Mhmm.
情景记忆是关于你生活中发生的事情的记忆。
Episodic memory is the memory for what happened in your life.
所以这就是，你知道的，哦，还记得那时候吗？
So this is, you know, oh, remember when?
就是那个时候。
The time when.
结果发现，要记住发生过的事情，你需要语言和表达能力，因为这是一段故事。
And this it turns out, like, to have a memory of what happened, you have to have language and the ability to because it's the story.
我们大多数人不记得四岁之前发生的事，除非那时发生了死亡、搬家或某种非常有意义、情感强烈、令人惊讶或全新的事情。
Most of us don't remember much of what happened before the age of four, unless there was a death or a move or something very meaningful, emotional, surprising, new.
因为我们还没有发展出足够的语言能力来讲述当时发生的故事。
Because we don't have the language skills developed yet to be able to tell the story of what happened.
所以大多数人会说，这种记忆大约从七岁、八岁，或者九岁左右开始出现，那些记忆就开始形成了。
So most of us will say, like, that starts to come online around, like, you know, seven, eight, like, nine, like, those memories start happening.
但无论你是孩子还是成年人，你都不会记得1986年9月17日星期三那天发生了什么，因为那只是个普通的星期三。
But again, whether you're a kid or a grown up, you don't remember what happened on Wednesday, 09/17/1986 because it was just a regular Wednesday.
但如果你那天在度假，对吧？或者那天是你的生日，只要它在某种程度上是特别的。
But if you were on vacation that day, right, or if that was your birthday, if it's special in some way.
我的意思是，我们之所以对假期记得这么清楚，是因为它们不是千篇一律的。
I mean, is why we remember vacations so well because they're not same old same old.
你身处一个新地方，有新的景色、声音、味道和体验。
You're in a new place with new sights and sounds and and tastes and and new experiences.
你很可能在那里拍照，而这些照片让你有机会重温发生过的事。
You're probably also taking pictures while you're there, and those photos give you a chance to revisit what happened.
于是你现在在练习，反复激活那些神经通路，让它们变得更强大。
And so now you're practicing and you're going over those neural pathways and making them stronger.
但日常生活中，我们不会拍下像‘我周三晚上和孩子们在这里吃的晚饭’这样的照片，所以我们就不会记得。
But day to day, you know, we don't take pictures of, you know, my Wednesday night dinner here with my kids, so we won't remember.
这没关系。
And that's okay.
所以，这就是重点。
So that this is the thing.
我希望人们能意识到，你不必因为别人说‘哦，这太让人难过了’就感到恐慌。
I want people to recognize that you don't have to freak out over like, you said, oh, that's so sad.
我们的大脑实际上设计得相当不错。
It's like, well, our brains are actually designed pretty well.
如果一件事有意义、有情感、令人惊讶或新颖，我们就会记住它。
If it's meaningful, emotional, surprising, or new, we keep it.
我们可以记住它七十年、八十年。
And we can keep it for seventy years, eighty years.
如果一件事有意义、有情感且重要，我们可以记住它一辈子。
We can keep it for a lifetime if it's meaningful and emotional and important.
但如果不是，放不下也没关系。
But if it's not, it's okay to let it go.
回来后，丽莎将谈论她畅销书《依然爱丽丝》，以及正常记忆衰退何时变为异常。
When we come back, Lisa talks about her best selling book, Still Alice, and what to do when normal memory loss becomes abnormal.
我是马诺伊·扎莫罗迪，您正在收听来自NPR的TED电台节目。
I'm Manoj Zamorodi, and you're listening to the TED Radio Hour from NPR.
请继续关注。
Stay with us.
这是来自NPR的TED播客。
It's the TED Radio Hour from NPR.
我是阿努什·扎莫罗迪。
I'm Anoush Zamorodi.
今天节目中，我们将探讨大脑是如何记忆的。
On the show today, how our brains remember.
今天我们全程与丽莎·杰诺瓦一起度过。
We are spending the hour with Lisa Genova.
她是一位神经科学家，专注于记忆和大脑功能的研究。
She's a neuroscientist and an expert in memory and brain function.
非常感谢你来到这里，丽莎。
Thank you so much for being here, Lisa.
欢迎回来。
Welcome back.
哦，这是我的荣幸。
Oh, it's my pleasure.
所以，让我们谈谈你发现的一种非常独特的方式，通过小说让神经系统疾病变得易于理解。
So let's talk about one of the ways very unique ways that you have found to make neurological disease really relatable novels.
你会如何描述你所创造的这种独特类型呢？
How would you describe your sort of niche genre that you've created?
是的。
Yeah.
我是一名神经科学小说家。
It's I'm a neuro novelist.
对。
Yes.
所以
So
我认为，对于任何发生在人类头部以上的事情，都存在一种特殊的禁忌。
I think that there's a special sort of taboo for anything going on with humans from the neck up.
所以，如果你患有神经退行性疾病、自闭症、双相情感障碍、渐冻症、阿尔茨海默病、亨廷顿病，任何发生在头部以上的问题，人们都会对你感到不适。
So if you've got a neurodegenerative disease, if you have autism, if you have bipolar disorder, if you have ALS, Alzheimer's, Huntington's, anything going on from the neck up, people get uncomfortable with you.
我认为整个社会对这些问题并不熟悉。
I think society as a whole isn't really familiar with those issues.
所以，作为人类，如果我们对某件事不熟悉，没有足够的语言和认知去理解你正在经历什么，我会很快感到不安。
And so, as humans, if we're not familiar with something, who I don't have the language and the familiarity to understand what's going on with you, I get uncomfortable really fast.
而让我缓解这种不安的最快方式，就是移开视线。
And the quickest way for me to relieve that discomfort is to look away.
所以，如果我们谈论阿尔茨海默病，而你患有阿尔茨海默病，我却不太理解你的情况，这让我感到不适，于是我就转过头去——这实际上就是背弃了你，以及全球五千万人。
And so, if we're talking about Alzheimer's and you have Alzheimer's and I don't quite understand what's going on with you, it's made me uncomfortable, and I look away, well, I've just turned my back on you and 50,000,000 people worldwide.
哇。
Wow.
除非，当我们谈论阿尔茨海默病时，它直接影响到我或我的家人，否则我肯定不会去读《神经科学杂志》，也不会去读任何非虚构类书籍。
And unless, if we're talking Alzheimer's, unless this impacts me or my family directly, certainly not gonna read the Journal of Neuroscience, I'm not gonna read a non fiction book either.
我不会去读任何回忆录。
I'm not gonna pick up a memoir.
但我可能会读一本小说，对吧？
But I might read a novel, Right?
而且更进一步，我可能会去看一部电影。
And even more so, I might see a movie.
所以，如果我发现虚构作品和叙事故事是触及最多人的途径，那就对了。
So if I've just found that fiction and narrative story, this is the way to reach the most people.
那我们来谈谈那些可能觉得‘哦，是的’的人吧。
So let's let's talk about for people who maybe I I feel like a lot of people are like, oh, yeah.
她写了那本书。
She wrote that book.
这是你的第一本书，2007年出版，名为《依然爱丽丝》，后来被拍成电影，朱利安·摩尔在2015年因此获得奥斯卡奖。
It's it's your first book that came out in 2007 called Still Alice, which was turned into a movie that won Julianne Moore an Oscar in 2015.
故事讲述了一位语言学教授患上早发性阿尔茨海默病的经历。
And this is about a linguistics professor who has early onset Alzheimer's.
她感到自己在疾病中无比孤独，因为正如你所说，很难解释这种感受，尤其是当你开始丧失语言能力时。
And she feels really alone in the illness because, as you say, it's like, it's hard to explain what it feels like, especially if you're starting to lose your language.
但在电影版本中，有一个场景是她的成年女儿问爱丽丝，这些早期症状是什么感觉。
But there is a moment in the film version when her adult daughter asks Alice what these early symptoms are like.
那到底是什么感觉？
Like, what does it actually feel like?
嗯，情况并不总是一样的。
Well, it's not always the same.
你知道，我有好日子，也有坏日子。
You know, I have I have good days, bad days.
在我状态好的时候，我几乎能像普通人一样正常生活。
And on my good days, I can, you know, almost pass through a normal person.
而在状态差的时候，我感觉自己都找不到自己了。
And on my bad days, I feel like I can't find myself.
我一直以来都以我的智慧、语言和表达能力为定义。
I've always been so defined by my intellect, my language, my articulation.
现在，有时候我能看见词语悬在眼前，却够不着，我不知道自己是谁，也不知道接下来还会失去什么。
Now sometimes I can see the words hanging in front of me and I can't reach them and I don't know who I am and and I don't know what I'm gonna lose next.
听起来真可怕。
Sounds horrible.
谢谢你的关心。
Thanks for asking.
那个场景真是太棒了。
That scene is just an amazing scene.
我非常感激她描述了疾病在初期阶段那种不可预测的感觉。
I really appreciated hearing her describe how unpredictable the disease feels during those first stages.
这个场景是基于别人告诉你的事情吗？
Was the scene based on something that someone told you?
是的。
Yeah.
我在为《依然爱丽丝》做研究时，认识了二十七位仍处于阿尔茨海默病早期阶段、尚能表达患病感受的人。
When I was doing the research for Still Alice and I came to know twenty seven people living with Alzheimer's who were still in the earliest stages or early enough that they could communicate what it feels like to live with it.
人们往往以为，你突然就失去了对记忆、过去和自我的掌控，就像一个开关被拨动，就再也回不去了。
And it does it people tend to think that it's well, you start to lose access to your memories and your history and who you are and it's like the flip of a switch and that it can never return.
但实际情况是，这种感觉会时有时无。
But it comes in and out.
这更像是我的朋友格雷格·奥布莱恩，他患有阿尔茨海默病。
It's more like my friend Greg O'Brien who has Alzheimer's.
他说，这就像你正在地下室洗衣服，有人却没意识到你在下面，把灯关掉了，于是四周一片漆黑。
He says it's like you're in the basement doing laundry and someone flicks the lights off because they don't realize you're down there and it goes dark.
你只能等待，等待，希望有人能意识到你还在下面，把灯重新打开，而终于有人这么做了。
And you're waiting and you're waiting and you're hoping that someone will realize that you're down there and turn the lights back on and someone does.
于是，一切又恢复了正常。
And and so that's when everything comes back online.
但你不知道会不会有人意识到你还在下面，或者灯会不会永远不会再亮了？
But you don't know if someone's gonna you know, is someone gonna realize you're down there or is it gonna are the lights gonna stay off for good?
那么我们现在知道了什么？
So what do we know now?
因为我们几十年来一直在听说阿尔茨海默病。
Because we've been hearing about Alzheimer's for decades now.
但关于这种疾病的运作机制以及大脑中发生了什么，我们究竟了解多少？
But what do we know in terms of how the disease works and what happens in the brain?
因为我们确实知道得更多了，对吧？
Because we do know a lot more, right?
是的。
We do.
好的。
Okay.
所以我们知道，由于多种原因，你的大脑中会积累一种叫做淀粉样蛋白β的蛋白质。
So we know that for many reasons, we can build up a protein called amyloid beta in your brain.
很多因素都会导致这种积累。
A lot of things can lead to this build up.
比如睡眠不足、饮食不良，任何对心脏有害的东西也会对大脑有害，这同样会导致淀粉样蛋白增加。
Things like not getting enough sleep, a poor diet leads to anything that is bad for your heart will also be bad for your brain and that it can also lead to increases in amyloid.
所以，淀粉样蛋白在你的大脑中不断积累，它是一种黏性蛋白质，如果它相互结合，就会形成淀粉样斑块。
So, amyloid is building up in your brain, it's a sticky protein and if it binds to itself it can form amyloid plaques.
我们认为，大脑中淀粉样斑块积累大约需要十年到二十年，最终会达到一个临界点。
We think it takes about ten to twenty years of amyloid plaque accumulation in your brain that ultimately will lead to a tipping point.
这将引发一系列分子级联反应，导致一种称为神经纤维缠结的现象，这些缠结会阻断神经元的运输通道，并引发神经炎症——你的大脑试图解决这个问题却无能为力，最终导致细胞死亡。
And it will trigger a molecular cascade that leads to something called neurofibrillary tangles and these sort of choke off the highway transportation system of your neurons and it will cause neuroinflammation where your brain is trying to solve the problem but it can't and then it leads to cell death.
这就是阿尔茨海默病。
This is Alzheimer's.
当达到临界点并触发这一分子级联反应时，我们才会开始出现痴呆的症状。
When it reaches the tipping point and it trips this molecular cascade, that's when we start to experience the symptoms of dementia.
我能问一下吗？你刚才用了‘痴呆’这个词？
Can I just ask you, you just used the word dementia?
我们能把‘阿尔茨海默病’和‘痴呆’这两个词互换使用吗？
Can we use those two things interchangeably, Alzheimer's and dementia?
它们经常被互换使用，但其实并不相同。
So they tend to be used interchangeably, but they're not the same thing.
痴呆是一种症状。
So, dementia is a symptom.
它并不是一种诊断。
It's not a diagnosis.
痴呆是一个术语，指记忆力、语言能力和认知功能的损害程度超出了与年龄和教育水平相符的正常范围。
Dementia is a term that means you have an impairment with memory, language, and cognition that is out of proportion to your age and education level.
明白了。
Got it.
它可能是由多种原因引起的症状。
And it can be a symptom due to many things.
因此，慢性睡眠不足、维生素B12缺乏都可能导致痴呆。
So, you can experience dementia due to chronic sleep deprivation, to a B12 deficiency.
它也可能是血管性痴呆或中风引起的。
It could be due to vascular dementia or a stroke.
它还可能是额颞叶痴呆引起的。
It could be due to frontotemporal lobe dementia.
因此，导致痴呆症状的原因有很多。
So there are lots of reasons why you can have symptoms of dementia.
在阿尔茨海默病中，痴呆是其标志性症状。
With Alzheimer's disease, dementia is the hallmark symptom.
你之前提到过，什么样的记忆丧失是正常的。
You talked about earlier what memory loss is normal.
但什么是不正常的呢？
But what is what is not normal?
有哪些迹象表明这种情况可能需要就医检查？
What are some of the sort of signs that maybe this is worth getting checked out?
当然。
Sure.
我们都会遇到这种情况：我的手机放哪儿了？
So we all have the, where did I put my phone?
我的钥匙或眼镜放哪儿了？
Where did I put my keys or my glasses?
如果你找到了钥匙，发现它们就在走廊的桌子上，而你当时赶时间，哦，我赶时间所以没注意把它们放哪儿了。
If you find your keys and they're, you know, they're on the hallway table and you were in a rush when you oh, I was in a rush and I didn't pay attention to where I put them.
所以现在所有在听的人应该都会产生共鸣，对，没错。
So now all of you listening will have that moment of recognizing like, oh, yes.
我没有留意把它们放在哪儿了，这根本和记忆无关。
I did not pay attention to where I put them and this never even involved my memory.
这是正常的。
That's normal.
但如果你在奇怪的地方找到钥匙，比如一个完全说不通的地方——你明明记得钥匙应该放在那儿，结果却在冰箱里或微波炉里找到了，这就很奇怪。
But if you find your keys in a place that's strange, that doesn't make any sense, like you were actually thinking this is where keys go, like, oh, I put you find them in the refrigerator or you find them in the microwave, that's strange.
如果你找到钥匙，看着它们却想不起这是干什么用的，那可能就有问题了。
If you find your keys and you're looking at them and think, I don't know what these are for, That could be a problem.
如果你开车停进了车库，但因为发短信或聊天而没注意停在了哪一层，等你回到车库时却想不起来自己是停在三楼还是四楼。
If you drove your car and parked in a garage and, again, you didn't pay attention to where you parked because you were texting, you were talking, and then you get back to the garage and you're like, I can't remember what if I'm parked on Level 3 or Level 4.
这很正常。
Well, that's normal.
你当时没留意。
You weren't paying attention.
如果你得了阿尔茨海默病，你会想：我怎么到这里来的？
If you have Alzheimer's, it will be, I can't remember how I got here.
或者你站在自己的车前，却认不出那是你的车，因为你不记得自己的车长什么样了。
Or you could be standing in front of your car and you don't recognize it as yours because you don't remember what your car looks like.
阿尔茨海默病患者会经常丢失一些常用名词，一天内可能丢失几十次。
The words that go missing when you have Alzheimer's, it's gonna be common nouns and dozens of times a day.
所以，一个25岁的人每周可能有三到四个词卡在嘴边，这完全正常。
So, you know, a 25 year old might have three to four tip of the tongue words a week and that's totally normal.
随着年龄增长，这种情况确实会增多。
It does increase as we get older.
我52岁了，注意到自己卡在嘴边的词变多了。
I'm 52 and I notice that I have more tip of the tongues.
但对于阿尔茨海默病患者来说，每天可能会丢失几十个词。
But for someone with Alzheimer's, it's going to be dozens of words a day that go missing.
就像是，哦，那个东西。
It's like, Oh, the thing.
就是你用来刷牙的那个东西。
The thing that, you know, you put in your mouth to to wash the teeth.
牙刷？
A toothbrush?
是的。
Yes.
你2017年做的第一次TED演讲，主题是《你能做什么来预防阿尔茨海默病》。
Your first TED talk, which you gave in 2017, it's called what you can do to prevent Alzheimer's.
但你提醒人们不要否认现实，并在演讲开头抛出一个令人震惊的统计数据。
But you say, don't be in denial, and you open your talk with a pretty terrifying statistic.
让我们展望未来，想象一下我们都已经85岁了。
Let's project out into the future, and let's imagine that we're all 85.
现在，请每个人看向身边的两个人。
Now everyone look at two people.
你们当中有一个人很可能患有阿尔茨海默病。
One of you probably has Alzheimer's disease.
好的。
Alright.
也许你在想，那不会发生在我身上。
Maybe you're thinking, well, it won't be me.
那么，好吧，你是个照护者。
Then, okay, you are a caregiver.
所以，如果我们足够幸运能活到足够长的时间，阿尔茨海默病似乎是我们大脑的宿命。
So so if we're lucky enough to live long enough, Alzheimer's appears to be our brain's destiny.
但也许它不必如此。
But maybe it doesn't have to be.
如果我告诉你，我们可以在不依赖治愈方法或医学进步的情况下，真正改变这些统计数据，改变我们大脑的宿命，你会怎么说？
What if I told you we could change these statistics, literally change our brain's destiny, without relying on a cure or advancements in medicine.
患阿尔茨海默病的可能性由你从父母那里继承的基因决定——这一点我无能为力，以及你的生活方式。
The likelihood of developing Alzheimer's is a combination of the genes that you inherited from your parents, nothing I can do about that, and how you live.
哇，这部分我完全能掌控。
Woah, there's everything I can do about that.
你的生活方式包括睡眠、饮食、锻炼、压力管理，以及保持社交和认知活跃。
The how you live is it's sleep, it's diet, it's exercise, it's managing stress, it's staying socially and cognitively active.
这些都能帮助你清除淀粉样蛋白，避免你达到那个临界点，防止你患上阿尔茨海默病。
Those are the things that can help you clear away the amyloid, keep you from getting to that tipping point, keep you from developing Alzheimer's.
那预防医学或医疗干预呢？
And what about preventive medicine or or medical intervention?
最新的进展是什么？
What's the latest?
所以情况其实很有希望。
So it's really hopeful.
我的意思是，我们还没达到那个阶段，每个人都希望立刻看到立竿见影的效果。
I mean, we're not there and everybody wants the home run right away.
每个人都希望昨天就能有神奇的药丸。
Everybody wants the magic pill yesterday.
有很多公司正在投入大量资金和数十年时间，研发一种针对淀粉样蛋白的化合物，以清除这种蛋白质，防止它形成斑块，永远不达到那个临界点。
There are companies, lots of companies spending a lot of money and and decades on developing a compound that targets amyloid that will clear this protein away so it doesn't develop into plaques and never reaches that tipping point.
这是一个很好的策略。
It's a great strategy.
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这并不简单。
It's not simple.
关于这些，数据是混合的。
There's mixed data on them.
有些非常有希望，有些则不然。
Some of it's really promising and some of it's not.
但总的来说，我对这些有希望的数据感到非常兴奋，因为它们证明了这样一个概念：如果你有患阿尔茨海默病的风险，如果你的淀粉样蛋白水平升高，你可以服用一种药物来阻止你的淀粉样蛋白斑块过度积累，从而预防你发展为阿尔茨海默病和痴呆症状。
But I would say overall, I'm really excited about the promising data because it's showing proof of concept that if you're at risk for developing Alzheimer's, if you have elevated levels of amyloid, that you can take a drug that will prevent your amyloid from, your amyloid plaques from becoming too high, and that will prevent you from developing Alzheimer's and symptoms of dementia.
你提到生活方式会影响我们患阿尔茨海默病的可能性，但也有遗传因素。
So you mentioned that lifestyle contributes to our likelihood of getting Alzheimer's, but there's also the genetic component.
如果你携带某种基因，比如APOE4，就会增加你的风险。
If you have a certain gene, a po e four, it increases your risk.
而现在，我们可以对这种基因进行检测。
And and that is something that we can now test for.
在电影《依然爱丽丝》中，有一个场景是爱丽丝告诉她的孩子们她患了这种病，并警告他们有一天他们也可能患上。
And there's this scene in still Alice where Alice is telling her children that she has the disease and warning them that one day they might develop it too.
问题是，我得的这种阿尔茨海默病非常罕见。
The thing is that the the type of Alzheimer's I have is very rare.
这是家族性的。
It's familial.
它是通过基因遗传的。
It's passed on genetically.
哦。
Oh
天哪。
my god.
我们相信她是遗传了她父亲的病，当然我们非常担心你们三个。
We believe that she got it from her father and of course we're very worried about the three of you.
现在有一种检测可以做，但是否要进行检测完全由你们自己决定。
Now there is a test you can take, but it's completely up to you whether you wanna find out or not.
我
I'm
抱歉。
sorry.
哦，丽莎，知道自己有这个基因有什么好处呢？
Oh, Lisa, what is the benefit of knowing you have this gene?
比如，这会如何改变你的行为？
Like, how does it change behavior?
知道的原因有几个。
The reason to know there's a few reasons.
首先，如果我携带ApoE4基因，我可以参加临床试验。
One is I can enroll in clinical trials if I have an ApoE four gene.
治疗阿尔茨海默病的关键是让人们参与临床试验，而且我们更希望招募尚未患病的人。
The way to solve Alzheimer's is for people to be in clinical trials, and we want people who don't have the disease yet.
因为如果我已经得了阿尔茨海默病，那就已经过了临界点。
Because if I already have Alzheimer's, I've already reached the tipping point.
我已经触发了分子级联反应，出现了缠结、神经炎症和细胞死亡。
I've tripped the molecular cascade, so I've got tangles and neuroinflammation and cell death.
我们正在开发的用于阻止阿尔茨海默病的药物，就像是吹灭一根火柴。
The drugs that we're trying to develop to stop Alzheimer's are like blowing out a match.
对吧？
Right?
如果你把淀粉样蛋白斑块比作一根点燃的火柴，那么这些药物的目标就是吹灭这根火柴，这是一个很好的策略。
So if you think of amyloid plaques as a lit match, the drugs are aimed at blowing the match out, which is a great strategy.
但如果我的大脑已经着火了，吹灭一根火柴根本无济于事。
But if my brain is already on fire, blowing out a match is not gonna do me any good.
所以我们希望那些容易患上阿尔茨海默病的人能参与临床试验。
So we want folks who are predisposed to developing Alzheimer's to be in the clinical trials.
因此，这是了解自己是否可能成为推动治愈和预防医学进展的一份子的一个原因。
So that's one reason to know if you're someone who could be part of the progress that's gonna lead us to the cure and to preventative medicine.
另一个原因是，我可以采取一些行动。
The other is that I can do something about it.
我认为，知道自己携带ApoE4基因意味着患病风险增加，会促使你更积极地过一种有益大脑健康的生活。
I think that knowing you have an increased risk with an apo e four gene gives you more motivation to live a brain healthy life.
所以，像演员克里斯·海姆斯沃斯。
And so, like, actor Chris Hemsworth.
是的。
Yeah.
我本来想问问你关于‘是的’这件事。
I was gonna ask you about Yeah.
他在漫威电影中扮演雷神索尔，表现非常出色，而且身材极其健壮。
So he plays Thor on the on the Marvel movies, and he's phenomenal, and he's, you know, so fit.
但他刚刚在自己的节目《无限可能》中公开表示，他携带两份ApoE4基因。
But he just disclosed very publicly on his show Limitless that he has two copies of ApoE four.
因此，他患阿尔茨海默病的风险增加了十到十二倍。
So he has a ten to twelve fold increased risk of developing Alzheimer's.
你知道，我也不确定。
You know, you're I don't know.
尤其是年轻人，总觉得自己会永远活下去。
You're constantly thinking you're gonna live forever, especially as a young individual.
然后突然被告知，这可能是会夺走你生命的东西，简直让我震惊。
And then to all of a sudden be told, oh, this may be the thing that might take you out was like, woah.
这让我一时之间不知所措。
Kinda floored me for a minute.
想到我可能再也记不起自己经历过的人生，记不起我的妻子、我的孩子。
The idea that I won't be able to remember the life I've experienced or my wife, my kids.
这可能是我最大的恐惧。
This is probably my biggest fear.
当你拥有这种基因时，发病年龄可能更年轻。
And when you have that, it's probably younger.
不是那种八十五岁的年纪。
It's not, you know, 85.
症状很可能会比那更早出现。
It would the symptoms would likely show up sooner than that.
而他才39岁，所以他现在正在重新安排自己的生活，尽可能做一切能让自己占得优势的事情。
And he's 39, so he is now arranging his life in such a way that he can do the things, everything he can, to tip the scale in his favor.
如果他做了所有正确的事情，也许他根本不会患上阿尔茨海默病。
And he might never develop Alzheimer's if, you know, hopefully, does all the right things.
是的。
Yeah.
所以好吧。
So okay.
他提到自己正在做的一件事是，不接那些压力太大的电影角色。
One of the things he says he's doing is not taking movie roles that are too stressful.
我的意思是，如果有人对你说：‘我携带这个基因，’
I mean, if someone said to you, look, I have the gene.
我是不是应该重新安排我的生活，以降低这种疾病的风险？
Should I rearrange my life around mitigating this disease?
在某些方面，确实如此。
In some ways, sure.
他做的一件事在我看来非常明智，那就是：天啊。
Like, so one of the things he's doing that sounds very smart to me is like, wow.
如果我要接一个需要我独居数月、不见家人、睡眠不足、极度焦虑和压力重重、无法良好应对的角色，这些都会增加他的淀粉样蛋白水平。
If I'm gonna take a movie role that's gonna require me to live alone and not see my family for months, I'm gonna not get enough sleep, I am gonna be, you know, just really anxious and stressed out and not be able to cope with that well, those are all things that are going to contribute to elevating his amyloid levels potentially.
所以我们每晚要睡七到九个小时。
So we to get seven to nine hours of sleep a night.
我们要减少对慢性压力的反应，比如练习瑜伽、冥想、正念，学会不被压力反应牵着走。
We want to be less reactive to chronic stress, so things like yoga, meditation, mindfulness, like being able to not get hijacked by the stress response.
我们要健康饮食，对心脏和大脑有益的饮食是地中海饮食或MIND饮食。
We want to be able to eat healthy, so a heart and brain healthy diet is a Mediterranean or mind diet.
我们每天都需要锻炼。
We want to exercise every day.
他在这方面做得很好，但对我们其他人来说，每周至少要进行五次每次三十分钟的快走。
So he's got that in spades, but for the rest of us, it's at least a thirty minute brisk walk five times a week.
我们还要保持社交和认知上的活跃。
And we want to stay socially and cognitively active.
与我们关心的人在一起，对我们的心理健康有益，对大脑和学习新事物也有好处。
So being around people, people we care about is good for our our emotional well-being and it's good for our brains and learning new things.
所以你的意思是，基因检测很好。
So it sounds like you're saying, okay, genetic testing, great.
研究正在向前推进。
Research is moving forward.
人们对此持乐观态度。
People are optimistic.
但现实是，如果85岁的人中有三分之一，甚至可能是一半会患上阿尔茨海默病，而越来越多的人能活到八十多岁甚至更久，我们作为社会必须认真思考如何彼此照护。
But the reality check is if that one out of three people at the age of 85, maybe one out of two, are gonna get Alzheimer's and more and more people are living into their eighties and beyond, we need to think very hard as a society about how we care for each other.
是的。
Yeah.
因此，照护是一个巨大的问题，主要由女性承担。
So caregiving is an is a is another massive issue, falls primarily to women.
我的意思是，阿尔茨海默病也主要影响女性。
I mean, Alzheimer's also falls primarily to women.
每三个阿尔茨海默病患者中就有两个是女性。
Two out of every three brains with Alzheimer's is a woman's brain.
三位照护者中有两位是女性。
Two out of three caregivers are women.
因此，这种疾病对女性的影响尤为严重。
So this disease disproportionately affects women.
这种疾病花费高昂。
This disease is expensive.
它在情感上令人精疲力尽。
It's emotionally grueling.
它在精神上也令人不堪重负。
It's spiritually grueling.
目前，全球有五千万人患有阿尔茨海默病。
And we are fifty million people worldwide right now with Alzheimer's.
我们的 population 正在老龄化。
Our population is aging.
婴儿潮一代正步入65岁及以上的年龄。
We have baby boomers aging into 65 and older.
它们现在就在那里，而且还在不断增长。
They're right there now and it's getting bigger.
我们希望让我们的大脑寿命与生命长度相匹配，因为你不想在生命的最后二十年里，连自己最爱的东西都记不起来。
And we wanna match our brain span to our lifespan because you don't wanna spend the last twenty years of your life not being able to remember the things you love.
稍后，神经小说家丽莎·杰诺瓦将继续分享如何在面对神经系统疾病时保持健康的心态。
In a minute, more from neuro novelist Lisa Genova on keeping a healthy perspective when it comes to neurological illnesses.
我是马诺伊·佐莫罗迪，您正在收听来自NPR的TED广播节目。
I'm Manoj Zomorodi, and you're listening to the TED Radio Hour from NPR.
我们马上回来。
We'll be right back.
嘿。
Hey.
如果你正在寻找支持我们节目和公共媒体的方式，我希望你能考虑订阅NPR Plus播客套餐。
If you're looking for a way to support our show and public media, I hope you will consider signing up for the NPR plus podcast bundle.
你可以收听大量NPR播客，包括这个节目，而且没有任何广告插播，还能访问一些你最爱节目的幕后内容。
You can listen to a bunch of NPR podcasts, including this one, without any sponsor breaks, and you can even access behind the scenes episodes from some of your favorite shows.
前往 +.npr.org 了解更多，谢谢。
Go find out more at +.npr.org, and thanks.
这是来自NPR的TED播客节目。
It's the TED Radio Hour from NPR.
我是马努什·扎莫罗迪。
I'm Manoush Zamorodi.
今天节目的主题是记忆与大脑。
On the show today, memory and the brain.
今天的嘉宾是丽莎·热诺瓦。
My guest today is Lisa Genova.
她是一位神经科学家，也是畅销书《依然爱丽丝》的作者。
She is a neuroscientist and the best selling author of Still Alice.
你好，丽莎。
Hi again, Lisa.
嗨，马努什。
Hi, Manush.
所以，丽莎，正如我们提到的，你刚刚出版了你的第一本非虚构作品《记忆》。
So, Lisa, you as we mentioned, you just came out with your first non fiction book, Remember.
但你已经写了五部小说，都是关于大脑健康和各种神经系统疾病的现实主义作品。
But you've written five novels, realistic fiction about brain health and various neurological conditions.
而最近的一本书叫做《每个音符》。
And the most recent book is called Every Note Played.
给我们讲讲这本书吧。
Tell us about it.
因为据我了解，这本书对你来说源自一个相当个人化的经历。
Because my understanding is this book came from a pretty personal place for you.
是的。
Yeah.
《每个音符》讲述的是一位患有渐冻症的音乐会钢琴家的故事。
So Every Note Played is about a concert pianist with ALS.
在美国，这种病也被称为卢·格里克病。
It's also called Lou Gehrig's disease in The US.
我选择写ALS，是因为理查德·格拉策尔——《依然爱丽丝》的联合编剧和联合导演——在读了我的书并同意担任编剧和导演后不久，就被诊断出患有ALS。他做出了极其英勇的决定，将生命最后的时光投入到这部电影的制作中。
I chose to write about ALS because Richard Glatzer, was the co script writer and co director of Still Alice, was diagnosed with ALS just a couple of months before he read my book and agreed to become the writer and director and made the very heroic decision to spend what would be the last days of his life working on this film.
因此，他没有选择环游世界，或者像人们常说的那样，围在家人朋友身边，而是决定再拍一部电影。
So rather than traveling the world or, you know, circling the wagon, staying close to home with friends and family, he decided to make one more film.
天哪。
Wow.
于是我亲眼目睹了他在片场的情况，他的ALS症状非常严重。ALS是一种运动神经元退行性疾病，患者会逐渐瘫痪。
And so I got to witness him on set, and he his ALS so ALS is a motor neuron degenerative disease, and you become increasingly paralyzed.
因为支配身体各部位的运动神经元死亡，你所有的随意肌都将失去控制。
So all the voluntary muscles of your body become inaccessible to you because the neurons feeding them die.
而他患的是延髓型ALS。
And his was called bulbar ALS.
这种病首先影响头部和颈部的运动神经元。
So it began the disease began in the motor neurons that feed his head and neck first.
所以当时他还能走路。
So he could still walk.
他在片场并没有坐在轮椅上，但已经无法说话了。
He wasn't in a wheelchair on the set, but he couldn't speak.
他用一根手指在iPad上打字来指导拍摄。
And he was directing by typing with one finger on an iPad.
这令人惊叹，非常了不起。
And it was remarkable and amazing.
我问他，我是否可以为了纪念他而写一篇关于ALS的文章，他是否愿意第一个教我一些患有这种病的感受。
And I asked him if I could write about ALS next in his honor and he would he be the first person to teach me a bit about what it feels like to have it.
他同意了。
And he agreed.
我和他的最后一封邮件。
And my last email's with him.
他用右脚的大脚趾打字。
He was typing with his right big toe.
真令人惊讶。
Wow.
所以我学到了很多。
So I learned a lot.
我知道我从他身上学到了很多，但那真是一段艰难的经历。
I know I learned a lot from him, but it was that was a tough one.
我认识的12个ALS患者中，有8个人在我完成初稿前就去世了。
Eight of the 12 people I came to know with ALS died before I finished the first draft.
所以这种病发展得很快。
So this disease is fast.
它可能会非常迅速。
It can it can be very fast.
据我所知，确诊后的平均预期寿命是三年。
The average life expectancy following diagnosis is, I believe, three years.
哇哦。
Woah.
我的意思是，我总是想到最著名的ALS患者——物理学家斯蒂芬·霍金，他与这种病共存了五十多年。
I mean, because I always think of the most famous person to have it, which was physicist Stephen Hawking who lived with it for over fifty years.
对。
Right.
但他本来不会活下来的。
But he wouldn't have.
对吧？
Right?
所以他接受了干预治疗来维持生命。
So so he had he had an intervention to keep him alive.
他做了气管切开手术，并接受了24/7的呼吸机生命支持，这需要24/7的重症监护护理来维持，因为要确保呼吸机和其他相关设备正常运行，涉及的工作量非常大。
He had a tracheostomy surgery and was put on 20 fourseven ventilated life support, which requires 20 fourseven ICU level nursing care to maintain because there's a lot that goes on with making sure that breathing machine and all that goes on works.
因此，只有大约百分之三的ALS患者会选择并有能力继续依靠生命支持系统生活。
So it's only, like, three percent of folks with ALS choose to and have the means to continue to live on life support.
你把这一切都做到了。
You make all of that.
我的意思是，这真的很难谈论。
I mean, it it it's hard to talk about.
这确实很难谈论，但你让这一切变得——我不想说是一种阅读的享受，但确实是一种享受，因为读你的书时，你会感觉自己进入了某人的内心。
It is really hard to talk about, but you make it I I don't wanna say a pleasure to read, but it is a pleasure to read because you feel that you're inside someone's head in your book.
是的。
Yeah.
我认为这些书之所以没有令人极度压抑，也不是因为它们太悲惨。
And I think the reason that the books aren't overwhelmingly depressing or aren't Yeah.
人们并不会每天24小时都活在诊断带来的悲剧中。
Tragic, so people don't live the tragedy of their diagnosis twenty four seven.
对吧？
Right?
所以这些故事，再次强调，是为了消除神秘感、消除污名化，以及人性化。
So these stories, again, it's about demystifying, destigmatizing, and humanizing.
这是一个关于人的故事。
So it's the human story.
因此，你知道，在研究这些神经系统疾病、讲述那些与神经系统疾病共存的人们的故事时，其实是在讲述我们共同的人类境遇。
And so it's, you know, these and I found that in studying these neurological conditions and in telling stories about people living with neurological conditions, it's telling the story of our shared human condition.
嗯。
Mhmm.
是的。
Yeah.
所以这就是它引起共鸣的地方。
So it that's where it resonates.
哦，这不是我的故事，但我能感受到它。
It's, oh, this is not my story, but I can feel it.
作为一个人，我能理解走在那些鞋子里会是什么感觉。
And I can understand as a human being what it would feel like to walk in those shoes.
我不知道你是否愿意读一段理查德的片段，他是一位钢琴家，已经被确诊了。
I wonder if you wouldn't mind reading a passage where Richard, the he's a concert pianist, has been diagnosed.
这是一个他思考未来将要面对什么的时刻。
And it's a moment where he's thinking about what lies ahead of him.
理查德做了计算。
Richard did the math.
这种疾病的平均病程是二十七到四十三个月。
The average duration of this disease is twenty seven to forty three months.
所以他在利鲁唑的作用下，大概能多活三个月，相当于额外的一个赛季。
So he stands to gain about three months of life on Rilutech, a single bonus season.
根据他最乐观的计算，他活不过五十岁生日。
According to his most optimistic calculations, he won't see his fiftieth birthday.
不一定，人们这么说。
Not necessarily, people say.
看看斯蒂芬·霍金，他们说。
Look at Stephen Hawking, they say.
当然，这种病会让他全身的肌肉瘫痪，除了肠道和跳动的心脏，但他可以通过人工呼吸机再活三十年。
Sure, the disease will paralyze every muscle he owns but for those in his intestines and his beating heart, but he could live on artificial ventilation for thirty more years.
这就是人们希望他接受的希望——那种激励他活下去、坚持下去的励志演讲。
This is the hope people want him to adopt, the inspirational speech aimed to fuel his will to live and persevere.
尽管理查德尚未对气管切开术做出最终决定，但如果今天必须选择，他宁愿死去，也不愿依赖侵入性通气。
Although Richard hasn't reached a definitive decision on a tracheostomy yet, if he had to choose today, he would rather die than rely on invasive ventilation.
斯蒂芬·霍金是一位理论物理学家，也是天才。
Stephen Hawking is a theoretical physicist and a genius.
他可以在思维的世界里生活。
He can live in the realm of his mind.
理查德不行。
Richard can't.
他低头看着自己无力垂下的双手。
He looks down at his dangling hands.
他的世界、他的痴迷、他的意义，都是钢琴。
His world, his fascination, his reason was the piano.
如果他是一位患有ALS的杰出理论物理学家，他或许会期待再活三十年。
If he were a brilliant theoretical physicist with ALS, he might hope for thirty more years.
但作为一名患有ALS的钢琴家，他不会再买新的日历了。
As a pianist with ALS, he's not buying any new calendars.
我读这本书时感到特别直接的是，它不仅讲述了ALS如何摧毁身体，还探讨了患者本人及其家人在面对这种疾病时必须做出的种种抉择。
What I found so immediate about the book was in addition to talking about how ALS, you know, destroys a body, it also talked about all the decisions that people have to make from the person who's afflicted with it to the family members about how to live with this disease.
我认为我们大多数人并不想思考这些问题，但我确信有些人读过你的书后会觉得，这真的很有帮助。
And I think most of us don't wanna think about that, but I I'm I'm sure there are people who've read your book and thought, this is really helpful, actually.
在某些方面，它就像一本指南。
In some ways, it's a guide.
是的。
Yeah.
所以，你知道，对于所有这些疾病、障碍和状况，诊断并不仅仅影响一个人。
So, you know, for all of these diseases and disorders and conditions, the diagnosis doesn't just happen to one person.
对吧？
Right?
它影响的是整个家庭。
It happens to the entire family.
所有爱这个人的人都会受到影响。
Everyone who loves that person is affected.
每个人都需要经历哀悼的过程，哀悼他们原本以为会拥有的生活，而如今这些生活已不复存在。
Everybody goes through the stages of grief over the life that they thought they were going to get to live that they now no longer get to live.
这可能会让人感到困惑。
And it can be confusing.
而且，由于许多这些疾病和状况都十分隐秘，人们只能独自面对，缺乏社区支持，不得不自己重新摸索。
And, again, because a lot of these conditions and diseases are so closeted that people go through them behind closed doors and don't have the benefit of community and sort of reinventing the wheel on their own.
如果你去看神经科医生，可能六个月后才能再见到他。
If you see a neurologist, you might not see that neurologist again for another six months.
真实的生活体验是你独自经历的，这真的非常艰难。
The lived experience is happening, you know, on your own, and it's can be really tough.
所以，是的，这些书已经成为人们了解未来、知晓预期的资源。
And so, yes, the books have become resources for folks to sort of see what's ahead, to know what's expected.
我总是在书的末尾列出一些能够提供帮助的资源。
There I always list resources in the back of the book of of places that can help.
是的，它们也被用于医学院、护理学院和作业治疗课程中。
And, yes, they're used in medical school, nursing school, OTPT.
看到这些故事能帮助患者及其家人理解如何相处、如何预期，同时帮助医疗界和照护者更好地理解人性化的体验，而不仅仅是治疗疾病，而是治疗患病的人，这真是太好了。
It's it's been wonderful to see that these stories can help both the people who live the families who live with the diseases understand how to relate and and know what what to expect and for the medical community, the caregivers, to know how to better relate the human experience and not just treat the disease, but the people with it.
科学界有没有什么迹象表明，有一天这种疾病可能会消失？是否可以采取预防措施？
Is there anything happening in the scientific community to suggest that one day this disease may not exist, and can anything be done preventively?
所以ALS要更复杂一些。
So ALS is a little trickier.
大约有百分之十的人携带一种名为SOD1的基因突变，这可能导致ALS。
So it's about ten percent of folks inherit a mutation called there's a SOD one gene that can confer ALS.
但对于大多数ALS患者来说，这是散发性的。
But for most folks with ALS, it's sporadic.
所以我们并不清楚它的病因。
So we don't really know what causes it.
我们也不知道是否有什么方法可以预防它。
We don't know if anything you can do to prevent it.
我遇到的ALS患者年龄各异。
The folks I met with ALS were every age.
比如，有一位25岁的医学生也患有这种病。
So, you know, a a 25 year old in medical school had it.
一位65岁的退伍军人也得了这个病。
A 65 year old vet had it.
一位45岁的人。
A 45 year old.
一个和我年纪相仿的人也得了这个病。
A a guy my age had it.
所以这种情况遍布各个年龄段。
So it was it was all over the place.
这真是令人害怕，因为与阿尔茨海默病不同，对于ALS，我无法告诉你任何能让你避免患病的方法。
And so the it's that's a scary thing because unlike Alzheimer's, this is one where there's not something that I can tell you to do that's gonna keep you safe from developing ALS.
这是一种我们还不清楚为何会发生的情况。
It's one of those we don't know why it happens.
天哪。
Gosh.
哦，丽莎，你写这些书时所沉浸的这个世界，我该说，这个世界。
Oh, Lisa, this world the world, I should say, that you submerse yourself in as you write these books.
你总是这么积极、直接、充满活力和乐观。
You're so positive and you're so, like, straightforward and energetic and optimistic.
你是怎么保持这样的状态的？
How do you how do you stay that way?
你写这些内容的时候，是怎么应对的？
How do you cope writing about all this?
嗯，这个问题我经常被问到。
Well, I I get that question a lot.
我觉得，你已经读过我的书了。
And I I think, like, you just you've read my books.
所以你知道，那些患有神经疾病和障碍的人，并不会一直沉浸在诊断带来的悲剧中。
And and so you know that, again, like, people who live with these neurological diseases and disorders don't live the tragedy of their diagnosis all the time.
这些人有足够的内心力量和视角，能够举手说：你知道吗？
And these are folks who have enough reserve perspective to raise their hands and say, you know what?
在我所剩无几的时间里，而且你知道，我们每个人的时间都是有限的。
With the limited time that I have left, and you know, we all only have limited time left.
但对于那些被给予这类诊断的人来说，时间往往就在他们面前飞逝，而他们却愿意抽出一些时间来与我分享。
But for folks who have been handed one of these diagnoses, often really the clock is very much ticking in their face, that they've offered to spend some of that time with me.
因此，这些是非常了不起的人，真正慷慨的人，他们愿意帮助我理解他们所经历的一切，以期帮助他人。
And so these are remarkable people, like really generous people who are offering to help me understand what they're living with in the hopes of helping others.
所以他们有一种传承和贡献的使命感。
So they have this sense of legacy and contribution.
因此，我不仅学到了我所写的疾病相关知识，更从每一个我所记录的故事中学到了如何成为一个更好的人。
So I I learn not just about the disease that I'm writing about, but I learn so much about how to be a better person from each of the stories that I write about.
所以这些故事不仅仅关于神经性疾病。
So these stories aren't just about neurological conditions.
它们关乎我们共同的人性。
They're about our shared human condition.
因此，我在学习无条件的爱、救赎与宽恕、身份认同，以及人为什么重要。
So I'm learning about unconditional love or redemption and forgiveness or identity, how people matter.
能够认识这些在撰写这些书籍过程中结识的人，对我来说是一种莫大的荣幸。
So it's been such a privilege to know all of the people I've come to know in writing these books.
我常常在他们生命中最脆弱、最恐惧的时刻与他们相遇，我们彼此了解的方式非常真实而毫无保留。
I'm meeting them often at the most vulnerable, scary times of their lives and we get to know each other in a way that's very real and unguarded.
对吧？
Right?
如果你想想日常的对话，我们很多人每天都在说：‘你好吗？’
It's not if you think about your everyday conversations, a lot of us walk through our days saying, how are you?
我很好。
I'm good.
你好吗？
Are you good?
挺好。
Good.
很高兴见到你。
Good to see you.
对吧？
Right?
我们经常这样做。
We do a lot of that.
而我目前正在写的这本书中，与人们的对话是关于一位患有双相情感障碍的女性。
Whereas, like, the conversations I have with people of the book I'm writing right now is about a woman with bipolar disorder.
人们来到我身边时并没有戴上面具，他们也不会告诉我
People are not coming to me with that armor up, and they're not telling me
他们很好。
they're good.
他们向我倾诉了一切，好的、坏的、丑陋的。
They're telling me all of it, the good, the bad, the ugly.
这非常真实。
It's very real.
这是一种非常真实的人际关系，我很荣幸能了解某个人。
It's a very real human relationship where I have the honor of getting to know someone.
这感觉很好。
And that feels good.
我认为，以一种真实的方式与另一个人建立联系，正是我们存在的原因。
Like, to connect with another human being in a very real way, I think, is why we're here.
我很幸运，有很多人主动站出来对我说：我会向你展示真实的自己，并让你与他人分享。
And I'm very lucky enough that a lot of people have raised their hands and said, I will show you my real self and let you share that with others.
这真的是一种荣幸。
It's really an honor.
我确信，有些听我们对话的人会觉得，这一切变得如此真实，简直让人害怕。
I'm sure there are, though, people listening to us in our conversation and thinking all of this getting real is freaking me out.
你对他们有什么想说的吗？
What's your message to them?
嗯，我不知道。
Well, I don't I don't know.
这确实应该让他们感到害怕。
It should be freaking them out.
我的意思是，人们每天都承受着这些事。
I mean, we people people live with things.
对吧？
Right?
在美国，有超过六百万人患有阿尔茨海默病。
So there are over six million people in The US with Alzheimer's.
患有双相情感障碍的人数甚至更多。
There's more than that who have bipolar disorder.
你的邻居中，有人患有自闭症、亨廷顿病和肌萎缩侧索硬化症。
There are people in your neighborhood who have autism and Huntington's and ALS.
这就是人们正在经历的生活。
And so this is what people are living with.
所以，对这些一无所知，我认为……我们越了解彼此，对吧？
And so to to not know anything about it, I think it just it's I think the more we understand about each other, right?
比如，我专注于神经类问题，但其实这可以延伸到任何领域。
Like, the more and I focus on neurological issues, but, I mean, this can extend to anything.
只要我们把别人当作异类，我们就会彼此疏离，这感觉并不好。
As long as we otherize people, then we stay separate, and that doesn't feel good.
这对咱们所有人都不好。
It's not good for any of us.
对吧？
Right?
如果你有阿尔茨海默病，而我把你看作异类，比如觉得你有阿尔茨海默病，这跟我不一样，所以我跟你没关系，你就待在那边好了。
So if you have Alzheimer's and I've otherized you, like, well, you have Alzheimer's and that's different from me, so I'm safe from you and you can just stay over there.
我为你感到难过。
I feel bad for you.
这就是同情。
That's sympathy.
但你跟我不同。
But you're different from me.
这样对整个世界没有任何帮助。
Well, that doesn't help us as a world.
如果我能对你产生共情，对，如果我能与你感同身受，而不是仅仅为你感到难过，那我就不会再把你当作异类了。
Like, if I can have empathy for you, right, if I can feel with you instead of for you, then I am not otherizing you anymore.
我正在消除我们之间的情感距离，我能想象并感受到成为你的感觉会是什么样。
I'm collapsing that distance, that emotional distance between us, and I can imagine it and feel what it might be like to be you.
这不应该让人们感到恐慌。
And that shouldn't freak people out.
让人恐慌的是：天啊，你和我不一样。
The freaking out is, oh my god, you're different than I am.
你是他者。
You're other.
你是危险的。
That you're dangerous.
我感到害怕。
I feel afraid.
但若我能看到我们共同的人性，看到你是一个正在与某种困境抗争的人，并能感同身受地体会那种生活体验，那就并不可怕。
But if I can see our common humanity, if I can see you as a human being struggling with something, and I can feel with you what that might feel like to live that, then that's not scary.
丽莎，我不是在开玩笑，但我的最后一个问题：如果我忘记你这一个小时告诉我的所有内容，只记住一件事，那应该是什么？
Lisa, not to be flip, but my final question, like, if I forget everything you told me this hour and I just remember one thing, what should it be?
这是个非常好的问题。
That's such a great question.
我要给你两点建议。
I'm gonna give you two things.
我假设你得了阿尔茨海默病。
I'm gonna say, let's say you had Alzheimer's.
假设你得了阿尔茨海默病，五分钟之后你就会忘记我们今天这一小时聊过的一切。
Let's say you have Alzheimer's, and you are gonna forget everything that we talked about in this hour five minutes from now.
你甚至不会记得你见过丽莎·热诺瓦。
You're not going to even remember that you met Lisa Genova.
但这并不意味着这场对话毫无意义。
That doesn't mean that this conversation didn't matter.
这并不意味着你没有享受这场对话。
That doesn't mean you didn't enjoy the conversation.
这也不意味着我没有享受这场对话。
That didn't mean that I didn't enjoy the conversation.
这并不意味着我们没有共同分享过什么。
That didn't mean that we didn't share something together.
所以我认为，对于许多了解并深爱阿尔茨海默病患者的人来说，总会有那么一刻感到：‘我爸爸已经不记得我了’，这让人无比沮丧和悲伤。
So I think that for a lot of people who know and love someone with Alzheimer's, there's this sense at some point that, well, your dad doesn't remember me anymore, and it's so upsetting and so sad.
他的短期记忆太短了，即使我去探望他，他也记不住我来过。
And his short term memory is so short that even if I go visit him, he's not gonna remember that I was there.
所以我不确定。
So I don't know.
我对此感到很难过，但你知道，这有什么意义呢？
I feel awful about this, but, you know, what's the point?
你说得对。
And it's you're right.
他可能已经不记得你是谁了，也可能不记得你在他身边说过的话，但他会记得你让他感受到的情绪。
He might not remember who you are anymore, and he might not remember what you said while you were there, but he'll remember how you made him feel.
对吧？
Right?
所以，我们的情感记忆与我们通常所理解的记忆并不相同。
So our emotional memories are not the same as the memories as we're used to thinking of them.
幸运的是，阿尔茨海默病并不会夺走一切。
Alzheimer's does not steal, thankfully.
它并不会剥夺我们感受所有人类情感的能力。
It does not rob our ability to feel all of the human emotions.
因此，它永远无法剥夺你去爱和感受被爱的能力。
So it will never take away your ability to love and feel loved.
我还希望人们能明白的一点是，你对自己的大脑健康拥有主动权。
The other thing I'd love people to take away is that you have agency over your brain health.
就像你的身体其他部分一样，你对大脑和记忆的健康也有着影响力。
So just like the rest of your body, you have an influence over the health of your brain and your memory.
你可以做很多事情来维护它。
And there's lots you can do to take care of it.
因此，每天都要记住这一点：你的睡眠习惯、饮食、锻炼、压力管理以及学习新事物。
So keep that in mind every day with your sleep habits, your eating, your exercise, you're managing stress and learning new things.
丽莎·杰诺瓦，非常感谢你带来这场精彩的对话。
Lisa Genova, thank you so much for this wonderful conversation.
当然。
You bet.
这很有趣。
It's been fun.
谢谢你，马尼什。
Thank you, Manish.
丽莎·杰诺瓦是一位神经科学家，著有《每一个音符》《记住：记忆的科学与遗忘的艺术》以及其他多部著作。
Lisa Genova is a neuroscientist and the author of Every Note Played and Remember the Science of Memory and the Art of Forgetting along with several other books.
你可以在 ted.com 上观看她的两场演讲。
You can see both of her talks at ted.com.
非常感谢你本周收听我们的节目。
Thank you so much for listening to our show this week.
本集由雷切尔·福克纳·怀特制作，由桑纳兹·梅什坎普尔剪辑。
This episode was produced by Rachel Faulkner White and edited by Sanaz Meshkampur.
NPR的制作团队还包括詹姆斯·德拉胡西、凯蒂·蒙特莱奥内、安德烈亚·古铁雷斯、马修·菲奥娜·盖林和凯瑟琳·西弗尔。
Our production staff at NPR also includes James Della Hussi, Katie Monteleone, Andrea Gutierrez, Matthew Fiona Guerin, and Catherine Seifer.
我们的主题音乐由罗姆廷·埃雷布利创作。
Our theme music was written by Romtin Ereblui.
我们的音频工程师是吉莉·穆恩。
Our audio engineer was Gilly Moon.
我们在TED的合作伙伴包括克里斯·安德森、科林·赫尔姆斯、安娜·菲兰、米歇尔·昆特、吉米·古铁雷斯和达尼埃拉·巴洛雷索。
Our partners at TED are Chris Anderson, Colin Helms, Anna Phelan, Michelle Quint, Jimmy Gutierrez, and Daniela Baloreso.
我是阿努什·扎莫罗迪，您正在收听来自NPR的《TED电台秀》。
I'm Anoush Zamorodi, and you have been listening to the TED Radio Hour from NPR.
在军队中，跨性别军人正面临新的打压。
In the military, transgender troops face a new crackdown.
在我心里，我知道自己并没有做错什么。
Like in my head, I know I'm doing nothing wrong.
我感觉自己在隐藏什么，但我不应该隐藏它。
I feel like I'm hiding something, but I shouldn't have to hide it.
在周日故事中，探讨特朗普政府如何驱逐跨性别服役人员，以及这可能对任务准备度造成的影响。
On the Sunday story, how the Trump administration is pushing out trans service members and what this could mean for mission readiness.
来自《Up First》播客的周日故事。
The Sunday story from the Up First podcast.
现在就在NPR应用中收听。
Listen now on the NPR app.
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