577: Something Only I Can See - This American Life
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00:00 00:00 Transcript Share This American Life Life Partners How to Listen Episodes Recommended About Overview Staff Announcements Fellowships Jobs Music Make Radio On The Road FAQ Submissions Merch Contact Us Our Other Shows Merch Follow Us Life Partners Subscribe to our newsletter Full episode Toggle Audio and Transcript Sync Transcript | Episode #577 | July 11, 2025 577: Something Only I Can See Note: This American Life is produced for the ear and designed to be heard.
00:00 00:00 文字记录 分享此 美国生活 生活伙伴 如何收听 剧集 推荐 关于 概述 员工公告 奖学金 工作 音乐 在路上制作电台 常见问题解答 提交 商品 联系我们 我们的其他节目 商品 关注我们 生活伙伴 订阅我们的时事通讯 整集 切换音频和文字记录同步 文字记录 | 内容第 577 集 | 2025 年 7 月 11 日 577：只有我能看到的东西 注：《美国生活》是为耳朵而制作的，旨在让人们听到。
If you are able, we strongly encourage you to listen to the audio, which includes emotion and emphasis that's not on the page.
如果可以的话，我们强烈建议您收听音频，其中包括页面上没有的情感和重点。
Transcripts are generated using a combination of speech recognition software and human transcribers, and may contain errors.
文字记录是使用语音识别软件和人工转录员结合生成的，可能包含错误。
Please check the corresponding audio before quoting in print.
请在印刷版引用前检查相应的音频。
Prologue: Prologue Ira Glass When Jeffrey was 22 he had this rare problem with his eyes, and doctors had to use lasers to fix vessels that were bleeding at the back of his left eye which worked great.
序言：序言 Ira Glass 杰弗里 22 岁时，他的眼睛出现了这种罕见的问题，医生不得不使用激光来修复他左眼后部出血的血管，效果很好。
But not long after, on a cold, bright winter day, he came into his house from the cold and saw this color.
但不久之后，在一个寒冷而明媚的冬日，他从寒冷中走进家门，看到了这种颜色。
And it was almost like an afterimage, like when you look at a bright light.
这几乎就像一个残像，就像当你看到强光时一样。
And it was a blind spot right where they had put the lasers.
他们放置激光的地方是一个盲点。
And instead of seeing blackness, it was this greenish not-green.
看到的不是黑色，而是绿色而非绿色。
It was like a green that could never exist.
就像是永远不可能存在的绿色。
And it was fluorescent.
而且它是荧光的。
And it was kind of pulsating and staticky.
它是一种脉动和静态的。
You know, actually maybe a better way of describing, it was like if the color black was fluorescent and green.
你知道，实际上也许有更好的描述方式，就像黑色是荧光色和绿色一样。
Wait.
等待。
I'm just going to say those words back to you.
我只是想对你说回这些话。
If the color black were fluorescent and green.
如果颜色黑色则荧光绿色。
Yeah.
是的。
Ira Glass You know that sounds crazy, right?
Ira Glass 你知道这听起来很疯狂，对吧？
Yeah.
是的。
Yeah.
是的。
Ira Glass You know how some colors seem more energetic, like bright red or bright yellow, and others are more peaceful, like sort of a blue-green sea color?
Ira Glass 你知道为什么有些颜色看起来更有活力，比如亮红色或亮黄色，而另一些颜色则更平和，比如蓝绿色的海洋颜色？
Which is this?
这是哪个？
It was both.
两者都是。
It was both energetic and calming.
它既充满活力又令人平静。
But a lot of the color is greenish, right?
但很多颜色都是绿色的，对吧？
It's in the kind of green family?
是那种绿色家庭的吗？
Yeah, it is greenish.
是的，它是绿色的。
I remember I bought a bunch of markers a while ago trying to find a way of representing it to my doctor.
我记得不久前我买了一堆记号笔，试图找到一种向我的医生展示它的方法。
And so if you were to try to paint it or draw it, you would start with a kind of fluorescent green, right?
所以如果你想尝试画它或画它，你会从一种荧光绿开始，对吗？
Mhm.
嗯。
Ira Glass And then what would you add to it to add the other part that is not green?
Ira Glass 然后你会添加什么来添加非绿色的其他部分？
Black and, like, fireworks.
黑色，就像烟花一样。
Ira Glass You just said black and fireworks?
Ira Glass：你刚才说的是黑色和烟花？
Yeah.
是的。
Ira Glass He said that if you've ever had a migraine headache, it can come with a kind of colorful, sparkly static.
艾拉·格拉斯（Ira Glass） 他说，如果你曾经患有偏头痛，它可能会伴随着一种色彩缤纷、闪闪发光的静电。
It was like that.
就是这样。
Fireworks.
烟花。
But really, he said, he's never done a good job describing this.
但实际上，他说，他从来没有很好地描述过这一点。
How do you describe a color that only you have seen?
你如何描述一种只有你见过的颜色？
OK, which of these things would you say about this color?
好的，关于这种颜色，您会说哪一点？
Does it remind you of the feeling of punching somebody in the face, or more like a soft kiss from somebody who you're just falling in love with, or more like warm toast and butter on a cold morning?
它是否让您想起打某人脸的感觉，或者更像是您刚刚爱上的人的轻吻，或者更像是在寒冷的早晨温暖的烤面包和黄油？
[CHUCKLING] You know, I have to say, of those three options you give me, I think I only have lots of experience with the third.
[咯咯笑]你知道，我不得不说，在你给我的这三个选择中，我想我只有第三个有很多经验。
And does the color remind you of that one?
这个颜色让你想起那个颜色了吗？
You said warm toast and butter on a cold morning?
你说在寒冷的早晨热吐司和黄油吗？
The color, does it remind you of the feeling of hope, or more a feeling of existential dread?
这个颜色，它会让你想起希望的感觉，还是更多的是一种存在主义的恐惧感？
Existential dread.
存在的恐惧。
Ira Glass The color, does it remind you at all of the feeling that you get when you're a kid and you get either a Ho-Ho or a Ding Dong, and it's sort of cool and so the outside shell of it is perfectly hard, and you bite into it and it cracks open and it's soft and chocolaty underneath?
Ira Glass 这个颜色，它是否让你想起小时候的感觉，无论是 Ho-Ho 还是 Ding Dong，它有点酷，所以它的外壳非常坚硬，你咬它，它会裂开，里面是柔软的巧克力味？
Um, no. Ira Glass The color, does it remind you of the feeling of somebody's going to cook something for you, and you don't really know if they're a good cook or bad cook, and then it turns out they're just an amazing cook.
嗯，不。 Ira Glass：这个颜色，是不是让你想起有人要为你做饭的感觉，你真的不知道他们是好厨师还是坏厨师，然后结果证明他们只是一个了不起的厨师。
And everything you eat, you think, this is a very good version of this particular thing that I'm eating?
你认为你吃的所有东西都是我正在吃的这种特殊东西的一个非常好的版本？
Yeah, you know, Ira, it was a little bit more mundane than that.
是的，你知道，艾拉，这比那更平凡一些。
When you see something that nobody else can see, it can be terrifying.
当你看到别人看不到的东西时，你会感到害怕。
And Jeffrey was scared that maybe something was seriously deteriorating with his vision.
杰弗里担心他的视力可能会严重恶化。
But once it became clear that he was going to be fine and he was going to be able to see, he had this other impulse-- to show his friends.
但当他清楚地知道自己会好起来并且能够看见东西时，他又有了另一种冲动——向他的朋友们展示。
To share it.
分享它。
Well, yeah.
嗯，是的。
I used to make drawings of it.
我曾经画过它的图画。
I used to make drawings of the shapes.
我曾经画过形状图。
Like, I used a black pen and then I did the outline in that fluorescent.
就像，我用了一支黑色笔，然后用荧光笔画了轮廓。
And you know, it's like, yeah, I'd show it to my friends and they didn't get it.
你知道，就像，是的，我把它展示给我的朋友们，但他们没有明白。
They didn't think it was that neat.
他们不认为这有那么整洁。
Oh, man.
哦，伙计。
Usually what I get is, "that's interesting."
通常我得到的答案是“这很有趣”。
Of course, when you see something that other people can't, you're stuck.
当然，当你看到别人看不到的东西时，你就会陷入困境。
I think for most people, you want to tell somebody.
我认为对于大多数人来说，你想告诉别人。
You want to share it.
你想分享它。
You want to do something.
你想做点什么。
Today no our program, we have three stories of people in this exact situation-- one involving science, one involving comedy, one involving angels.
今天，在我们的节目中，我们有三个关于人们在这种情况下的故事——一个涉及科学，一个涉及喜剧，一个涉及天使。
These people see something nobody else can and they cannot stop themselves.
这些人看到了别人看不到的东西，他们也无法阻止自己。
They can't shut up about it.
他们不能对此闭嘴。
From WBEZ Chicago, it's This American Life.
来自芝加哥 WBEZ 的《This American Life》。
I'm Ira Glass.
我是艾拉·格拉斯。
Stay with us.
留在我们身边。
Act One, Do These Genes Make Me Look Fatless?
第一幕，这些基因会让我看起来不胖吗？
Well, let's kick things off with this story of somebody who not only sees something that nobody else sees, when she tells other people about the stuff she see, they don't buy it.
好吧，让我们从这个故事开始吧，一个人不仅看到了别人看不到的东西，当她告诉其他人她看到的东西时，他们并不买账。
Investigative reporter David Epstein explains.
调查记者大卫·爱泼斯坦解释道。
I wrote a book called The Sports Gene.
我写了一本书叫《体育基因》。
It's partly about how some super-athletes are genetically different from the rest of us.
部分原因在于一些超级运动员在基因上与我们其他人有何不同。
They have super genes.
他们有超级基因。
They're physiological freaks.
他们是生理上的怪胎。
I was deluged with emails from parents wanting to know how they could find out if their child had Michael Jordan genes.
我收到了大量来自父母的电子邮件，他们想知道如何查明自己的孩子是否具有迈克尔·乔丹基因。
A coach wrote offering up his players as guinea pigs for genetic experimentation.
一位教练写道，将他的球员作为基因实验的小白鼠。
There were so many unhinged email coming in that I pretty much stopped opening them.
有太多的精神错乱的电子邮件进来，我几乎不再打开它们。
And then I got this one that had the subject heading, "Olympic Medalist and Muscular Dystrophy Patient with the Same Mutation" I opened it, figuring it would be a link to some article that I'd missed in my reporting.
然后我收到了这个主题标题为“具有相同突变的奥运会奖牌获得者和肌肉萎缩症患者”的文章，我打开它，认为它是我在报告中错过的某篇文章的链接。
Instead, it was a note from a 39-year-old Iowa mother.
相反，这是一位 39 岁爱荷华州母亲的留言。
Her name was Jill Viles.
她的名字叫吉尔·维尔斯。
She was the muscular dystrophy patient, and she had a wild theory linking her genes to an Olympic sprinter named Priscilla Lopes-Schliep, and she wanted to send more info.
她是一名肌肉萎缩症患者，她有一个疯狂的理论，将她的基因与一位名叫普里西拉·洛佩斯-施利普的奥运会短跑运动员联系起来，她想发送更多信息。
Days later, a package arrived-- a 19-page illustrated bound packet.
几天后，一个包裹到达了——一个 19 页的插图装订包。
I thumbed through it.
我翻阅了一下。
It was a little weird-- hand-drawn diagrams with cutouts of little cartoon weightlifters representing protein molecules, old photos of herself and her siblings, the original pictures, not copies.
这有点奇怪——手绘图表，上面有代表蛋白质分子的小卡通举重运动员的剪纸，她自己和她兄弟姐妹的旧照片，原始照片，而不是复制品。
There was a detailed medical history, and it was clear she knew some serious science.
里面有详细的病史，显然她懂得一些严肃的科学知识。
She described in detail how proteins function.
她详细描述了蛋白质的功能。
She referred to gene mutations by their specific DNA addresses, the way a scientist would.
她按照科学家的方式通过特定的 DNA 地址来指代基因突变。
And then I landed on page 14.
然后我就到了第 14 页。
There were two photos-- one of Jill in a royal blue bikini, sitting on a beach.
有两张照片——一张是吉尔穿着宝蓝色比基尼坐在海滩上。
Her torso looks normal, but her arms, it's like they're on the wrong body, like the stick arms on a snowman.
她的躯干看起来很正常，但她的手臂，就像在错误的身体上，就像雪人的棍子手臂一样。
Her legs, too, are so thin that her knee joint is wider than her thigh.
她的腿也很细，膝关节比大腿还宽。
Those legs can't possibly hold her upright, I thought.
我想，那双腿不可能让她直立起来。
The other picture was of Priscilla Lopes-Schlip, who'd been ranked the best hurdler in the world.
另一张照片是普里西拉·洛佩斯·施利普（Priscilla Lopes-Schlip），她被评为世界上最好的跨栏运动员。
In 2008, she won the bronze medal in the 100-meter hurdles at the Olympics in Beijing.
2008年，她在北京奥运会上获得100米栏铜牌。
In the photo, she's in mid-stride.
照片中，她正迈着大步。
It's hard to describe just how muscular she looks.
很难描述她看起来有多肌肉发达。
Picture all the muscle you can imagine on a woman.
想象一下你能想象到的女人身上所有的肌肉。
Now picture more.
现在多画一些。
In that photo, Priscilla's like the vision of a superhero that a third-grader might draw-- huge muscles bursting from her thighs, like her skin can barely contain all of the power beneath it; ropey veins snaking along her biceps.
在那张照片中，普里西拉就像三年级学生画的超级英雄一样——巨大的肌肉从她的大腿上爆发出来，就像她的皮肤几乎无法容纳其下的所有力量；绳状静脉沿着她的二头肌蜿蜒而行。
This is the woman Jill believed she shared the same genetic code with.
吉尔相信她与这个女人拥有相同的遗传密码。
Jill, remember, whose arms and legs are like sticks.
吉尔，记住，她的胳膊和腿就像棍子一样。
But look at Lopes-Schlip.
但看看洛佩斯-施利普。
She's coming.
她来了。
Priscilla Lopes-Schliep making a move.
普里西拉·洛佩斯-施利普采取行动。
To the finish she goes, and she will surge across that line.
她会走到终点，她会冲过那条线。
A world-leading time of 12:52.
世界领先的时间为 12 分 52 秒。
All Jill's life, doctors had been mystified by her case.
吉尔一生中，医生们都对她的病例感到困惑。
They had no idea how her muscle disease worked, much less how to treat it.
他们不知道她的肌肉疾病是如何发生的，更不用说如何治疗了。
She did know her disease came from a rare genetic mutation.
她确实知道她的疾病来自一种罕见的基因突变。
And she wanted to reach Priscilla, because, looking at photos of Priscilla, seeing her body, she saw clues that made her believe Priscilla had the same mutation.
她想联系普里西拉，因为，看着普里西拉的照片，看到她的身体，她看到了一些线索，让她相信普里西拉有同样的突变。
If Priscilla did, if Jill was right, then scientists might figure out what was making Jill's muscles shrink and Priscilla's muscles balloon.
如果普里西拉做到了，如果吉尔是对的，那么科学家们可能会弄清楚是什么让吉尔的肌肉收缩而普里西拉的肌肉膨胀。
And maybe people like Jill could someday be helped.
也许有一天像吉尔这样的人会得到帮助。
The whole thing seemed like a long shot, so I reached out to Robert Green, a geneticist at Harvard who I got to know while writing my book.
整个事情似乎不太可能发生，所以我联系了哈佛大学的遗传学家罗伯特·格林（Robert Green），我在写书时认识了他。
He's an important proponent of people being allowed to get their own genetic tests.
他是允许人们进行自己的基因测试的重要支持者。
But after looking at the pictures of Jill and Priscilla, he thought Jill was almost certainly wrong.
但在看过吉尔和普里西拉的照片后，他认为吉尔几乎肯定是错的。
He doubted they had anything in common.
他怀疑他们有什么共同点。
And science aside, he had other concerns.
除了科学之外，他还有其他担忧。
For one thing, a somewhat famous athlete, just like any other celebrity, can become the focal point for an individual for various reasons in a very unhealthy way.
一方面，一位颇有名气的运动员，就像任何其他名人一样，可能会因各种原因以一种非常不健康的方式成为个人的焦点。
I was concerned that empowering a relationship between these two women could end badly, yeah.
我担心增强这两个女人之间的关系可能会以糟糕的方式结束，是的。
I mean, people go off the deep end when they're relating to celebrities they think they have a connection to.
我的意思是，当人们与他们认为有联系的名人交往时，他们会陷入困境。
Of course, this is a very polite way of saying, maybe she's a nut job.
当然，这是一种非常礼貌的说法，也许她是个疯子。
I wondered the same thing.
我也想知道同样的事情。
How could you not?
你怎么能不呢？
The idea that an Iowa housewife working off Google Images would make a medical discovery about a professional athlete, whose body has been obsessively examined for years by a small army of doctors and athletic trainers, it seemed pretty ludicrous.
爱荷华州的一位家庭主妇利用谷歌图像对一名职业运动员做出了医学发现，而一小群医生和运动教练多年来一直对他的身体进行了痴迷的检查，这种想法似乎相当荒谬。
But the fact is people with MDs and PhDs have been telling Jill that her theories are ludicrous pretty much her whole life.
但事实是，拥有医学博士和博士学位的人一直告诉吉尔，她的理论几乎一生都很荒谬。
Jill was born in 1974.
吉尔出生于 1974 年。
At first, everything was great.
起初，一切都很棒。
She met all the normal baby milestones.
她达到了所有正常的婴儿里程碑。
She sat, crawled, and walked on time.
她按时坐、爬、走。
Then at age four, she started stumbling and tripping all the time, constantly falling flat on her face.
四岁时，她开始一直跌跌撞撞，不断地摔倒在地。
I would describe this fear I had about witches' fingers.
我会描述我对女巫手指的恐惧。
This is Jill.
这是吉尔。
Jill Viles And my mom was kind of puzzled.
吉尔·维尔斯 我妈妈有点困惑。
What was I talking about, witches' fingers?
我在说什么，女巫的手指？
What do you mean?
你是什么意思？
And when we'd walk, I'd felt this sensation, almost like there were little-- there were gnarled hands and fingers reaching up and grabbing my shins, and I'd fall really forcefully.
当我们走路时，我感觉到了这种感觉，几乎就像没有什么——有粗糙的手和手指伸出来抓住我的小腿，我会非常用力地摔倒。
That was kind of the beginning of noticing something was different.
那是注意到有些东西不同的开始。
Jill's dad remembered that he'd had some problems walking around the same age, which his doctors had said was the result of a very mild case of polio.
吉尔的父亲记得，他在同龄的时候就出现了一些行走问题，他的医生说这是由非常轻微的小儿麻痹症引起的。
But Jill's troubles were much worse than her dad's had ever been.
但吉尔的麻烦比她父亲的麻烦要严重得多。
And no one could give them an answer.
而没有人能给他们答案。
Her pediatrician was stumped.
她的儿科医生被难住了。
He suggested they take her to the Mayo Clinic.
他建议他们带她去梅奥诊所。
They were stumped there, too.
他们也被难住了。
They tested the whole family, and found that Jill and her brother and her dad all had signs of muscle damage.
他们对全家人进行了检查，发现吉尔和她的兄弟以及她的父亲都有肌肉损伤的迹象。
But Jill was the only one having trouble walking.
但吉尔是唯一一个走路有困难的人。
It might be muscular dystrophy, the doctors thought, but that didn't usually show up this way in little girls.
医生认为，这可能是肌肉萎缩症，但小女孩通常不会出现这种情况。
They were really, really sure they'd never seen anything like this.
他们非常非常确定他们从未见过这样的事情。
They said our family was extremely unique.
他们说我们的家庭非常独特。
And they couldn't define what type it was.
他们无法定义它是什么类型。
Ultimately, that's good in one way because they're being honest.
最终，这在某种程度上是件好事，因为他们很诚实。
But on the other hand, it was terrifying.
但另一方面，又很可怕。
What is my life expectancy?
我的预期寿命是多少？
What are the symptoms that I'll be dealing with?
我将要面对哪些症状？
It's alarming if you don't have something to grasp a hold of.
如果你没有东西可以抓住，那就令人震惊了。
Jill went back to the Mayo Clinic every year, and it was always the same.
吉尔每年都会回到梅奥诊所，结果总是一样。
There was nothing the doctors could do, nothing new they could tell her.
医生无能为力，也无法告诉她新的信息。
The constant falling eventually stopped, but it was replaced by a burning sensation in her legs.
持续的坠落最终停止了，但取而代之的是双腿的灼烧感。
And while she was growing in height like a normal girl, the fat on her arms and legs was vanishing.
当她像正常女孩一样身高增长时，手臂和腿上的脂肪却在消失。
By the time she was eight, her arms and legs were so skinny that other kids could wrap their fingers around her wrists and ankles.
当她八岁的时候，她的胳膊和腿已经瘦得连其他孩子都可以用手指缠绕她的手腕和脚踝。
By age 12, veins were popping out of her legs.
12岁时，她的腿上的静脉就开始突出。
Kids asked how it felt to be old.
孩子们问老了感觉如何。
And then her muscles started to fail again.
然后她的肌肉又开始衰竭。
I could remember just getting on a bike I'd always ridden and feeling like someone came up behind me and just threw me into the handlebars, and got a big bruise across my chest from-- I'd fall so hard.
我记得刚骑上一辆我一直骑的自行车，感觉就像有人从我身后过来，把我扔到车把上，我的胸部受到了很大的瘀伤——我会摔得很重。
I couldn't hold myself over the bike.
我无法控制住自行车。
My muscles would just start quivering.
我的肌肉就会开始颤抖。
And roller skating-- I invited a friend to go with me, and I can't even stand up on the skates.
还有轮滑——我邀请了一个朋友和我一起去，我什至不能在溜冰鞋上站起来。
And I'm just sitting there going, something's terribly wrong.
我只是坐在那里思考，有什么事情非常不对劲。
How rapid?
有多快？
How quick was that, that you basically lost the ability to roller skate and ride your bike?
有多快，你就基本上失去了滑旱冰和骑自行车的能力？
I would say probably within a few weeks.
我想说可能会在几周内。
Jill didn't even bother to tell her parents what was happening.
吉尔甚至懒得告诉她的父母发生了什么事。
She knew there was nothing there the doctors could do about it.
她知道医生对此无能为力。
By the end of that summer, the symptoms eased up.
到那个夏天结束时，症状有所缓解。
She could walk OK again.
她又可以正常行走了。
She started looking for answers on her own, but she did it the way a kid would.
她开始自己寻找答案，但她这样做就像一个孩子一样。
You know, I'm having my body do things that I can't control.
你知道，我让我的身体做一些我无法控制的事情。
Forces are acting on me.
力量正在对我起作用。
And I developed curiosity, fascination with things, like I would read about poltergeists.
我对事物产生了好奇心和迷恋，就像我会读到关于恶作剧的故事一样。
And I would bring home lots of books from the library.
我会从图书馆带很多书回家。
I remember it really freaked out my dad at one point, because he tipped over my book bag and there's all these books about supernatural things.
我记得有一次真的把我爸爸吓坏了，因为他打翻了我的书包，里面全是关于超自然事物的书。
And he was like, what are you into the occult or what?
他说，你对神秘学感兴趣吗？
And it was nothing of the sort.
但事实并非如此。
It was about, I couldn't explain what was going on with me.
这是关于，我无法解释我身上发生了什么。
The doctors couldn't explain.
医生无法解释。
And I found these people that people couldn't explain what was happening to them totally fascinating.
我发现这些人们无法解释发生在他们身上的事情非常令人着迷。
I believe them.
我相信他们。
By the time she went to college, Jill had maxed out at 5'3" and about 87 pounds.
当吉尔上大学时，她的最大身高为 5 英尺 3 英寸，体重约为 87 磅。
She decided that if she was going to figure out what was happening with her body, she'd have to do it herself.
她决定，如果她想弄清楚自己的身体出了什么问题，就必须自己动手。
So during Jill's first semester, she set up camp in the library.
因此，吉尔在第一学期就在图书馆安营扎寨。
She began poring over every textbook and scientific journal article she could find on different kinds of muscle disease.
她开始仔细研究她能找到的关于不同类型肌肉疾病的所有教科书和科学期刊文章。
So I just thought, well, I'll start reading about them one by one and see if something fits.
所以我想，好吧，我将开始一篇一篇地阅读它们，看看是否合适。
She did this for months, going article by article, like a police officer driving up and down every street doing a grid search.
她这样做了几个月，逐篇文章，就像警察在每条街上开着车进行网格搜索一样。
But nothing really fit, until she came to a page in a medical journal about an extremely rare type of muscular dystrophy called Emery-Dreifuss.
但没有什么真正合适的，直到她在一本医学杂志上看到了关于一种极其罕见的肌肉萎缩症的页面，称为埃默里-德莱福斯症。
And then looking at the pictures, it was a very startling thing to realize, I'm seeing my dad's arm-- just an instantaneous lock on something that's in your visual memory.
然后看着这些照片，我意识到，我看到了我父亲的手臂，这是一件非常令人惊讶的事情——只是瞬间锁定了你视觉记忆中的某个东西。
Well, what did you see?
嗯，你看到了什么？
Jill Viles As a little girl, I would notice he had what I called Popeye arms-- big forearms and hand muscles.
吉尔·维尔斯（Jill Viles）小时候，我注意到他有我所说的大力水手手臂——大前臂和手部肌肉。
And then as I'm reading about Emery-Dreifuss, they actually describe the look of the arms as a Popeye-arm deformity.
当我读到有关 Emery-Dreifuss 的文章时，他们实际上将手臂的外观描述为大力水手臂畸形。
But there were very, very few photos of women with Emery-Dreifuss muscular dystrophy.
但患有埃默里-德莱福斯肌营养不良症的女性的照片非常非常少。
The journal described the three hallmarks of Emery-Dreifuss patients.
该杂志描述了 Emery-Dreifuss 患者的三个特征。
They couldn't touch their chins to their chests, or their heels to the floor, and their arms were perpetually bent at the elbow.
他们无法将下巴接触到胸部，也无法将脚后跟接触到地板，而且他们的手臂永远弯曲在肘部。
And I'm getting chills reading this, thinking, well, I've got all three.
读到这里我感到不寒而栗，心想，好吧，我已经拥有了这三个。
A really great visual to think about that is, shockingly, a Barbie doll.
令人震惊的是，一个真正伟大的视觉效果是芭比娃娃。
That is, elbows that don't bend and feet slanted to fit into high heels.
也就是说，肘部不弯曲，脚倾斜以适应高跟鞋。
Actually, it's a terrific representation of what does Emery-Dreifuss look like, which is very ironic because we give this to little girls and say, this is perfect.
事实上，它完美地展现了埃默里-德莱福斯的样子，这非常讽刺，因为我们把它送给小女孩，并说，这是完美的。
And we're actually handing them a doll that has a genetic disorder.
我们实际上给了他们一个患有遗传疾病的娃娃。
So when you flip open and you see these pictures and see these descriptions, is it like the light bulb just flipped on and this is it?
因此，当您打开并看到这些图片并看到这些描述时，是不是就像灯泡刚刚打开，就是这样？
The light bulb.
灯泡。
I was sure.
我确定。
It's eerie.
真是怪异。
It's great, but it's terrifying.
这很棒，但也很可怕。
What was very frightening was to read there's a lot of cardiac issues involved with this disease.
非常可怕的是读到有很多心脏问题与这种疾病有关。
Emery-Dreifuss patients, Jill learned, often dropped dead of heart failure.
吉尔了解到，埃默里-德莱弗斯病患者常常死于心力衰竭。
She became obsessed with reading about it.
她开始沉迷于阅读相关内容。
Before she went home for college break, she stuffed her bag full of medical books and journal articles.
大学放假回家之前，她在包里装满了医学书籍和期刊文章。
I purposely even hid them under several books because I didn't want to alarm anybody at home.
我什至故意把它们藏在几本书下面，因为我不想惊动家里的任何人。
And I went out in the kitchen long enough to make microwave popcorn.
我在厨房里呆了足够长的时间来制作微波炉爆米花。
And I came back in and my dad was reading them.
我回来时，我爸爸正在读它们。
And I tried to take them away.
我试图把它们带走。
And I'm like, just don't read those.
我想，不要读那些。
And he was really sucked into it.
而他也确实被卷入其中了。
And he said, well, I have all these symptoms.
他说，好吧，我有所有这些症状。
And I said, well, yeah.
我说，好吧，是的。
I know the arm thing and the neck.
我知道手臂和脖子。
And he said, no. He said, I have all these cardiac symptoms.
他说，不。他说，我有所有这些心脏症状。
He had always thought the stiffness in his muscles and heart troubles were unrelated.
他一直认为肌肉僵硬和心脏病无关。
He said, well, the doctors told me I had a virus, not to worry about it.
他说，好吧，医生告诉我我感染了病毒，不用担心。
We both just looked to each other, and I said, it's not a virus.
我们俩互相看了看，我说，这不是病毒。
We have Emery-Dreifuss.
我们有埃默里-德莱福斯。
They went to the Iowa Heart Center, where doctors put a heart monitor on Jill's father.
他们去了爱荷华州心脏中心，那里的医生给吉尔的父亲安装了心脏监护仪。
His pulse rate dropped below 30 beats per minute, which meant he was either about to win the Tour de France, or he was about to drop dead.
他的脉搏频率降至每分钟 30 次以下，这意味着他要么即将赢得环法自行车赛，要么即将死去。
He had a pacemaker put in immediately.
他立即安装了心脏起搏器。
She saved her dad's life.
她救了她父亲的命。
I mean, just absolutely amazing.
我的意思是，简直太棒了。
This is Jill's mom, Mary.
这是吉尔的妈妈玛丽。
Mary Viles If it wasn't for her, how would we have ever known this?
玛丽·维尔斯：如果没有她，我们怎么会知道这一点？
I remember being in the hospital that day.
我记得那天我在医院。
And I think he was just in awe of Jill and just love, total love for Jill.
我认为他只是敬畏吉尔并且爱吉尔，完全爱吉尔。
But I think it was a hard burden for her, because it just seemed like no one else was looking.
但我认为这对她来说是一个沉重的负担，因为似乎没有其他人在看。
The Iowa Heart Center wasn't set up to confirm whether or not her family had Emery-Dreifuss.
爱荷华州心脏中心并未设立来确认她的家人是否患有埃默里-德莱福斯病。
That wasn't their specialty.
那不是他们的专长。
So she went looking for someone who could.
于是她就去寻找有能力的人。
Remember, she was 19.
请记住，她才19岁。
Well, I went to a neurology clinic.
嗯，我去了神经内科诊所。
I can remember even what I wore that day.
我什至还记得那天我穿的衣服。
I dressed up as professional as I could.
我尽可能地打扮得很专业。
I wanted to be taken seriously.
我希望被认真对待。
I mean, I had on a navy pantsuit, and tried to present the articles to my neurologist.
我的意思是，我穿着海军蓝裤装，并试图向我的神经科医生展示这些文章。
And how did you even start that conversation?
你是如何开始这次谈话的？
How'd you make your case?
你的案子是怎样提出来的？
I just said I had been studying genetics.
我刚才说我一直在研究遗传学。
I've been spending a great deal of time in the library, and I've come across these photos.
我在图书馆呆了很长时间，偶然看到了这些照片。
And I am sure this is what we have, and this is the name.
我确信这就是我们所拥有的，这就是名字。
And could you look at these with me?
你能和我一起看看这些吗？
And the doctor just was very abrupt with me and said, no, you don't have that, and refused to look at the papers.
医生对我非常唐突地说，不，你没有这个，并且拒绝看文件。
It might seem rude that a doctor would refuse even to look, but at the time, most doctors believed Emery-Dreifuss only occurred in men.
医生甚至拒绝看，这似乎很粗鲁，但当时，大多数医生认为埃默里-德莱弗斯只发生在男性身上。
Also, this was a self-diagnosis coming from a teenager-- a defiant teenager.
而且，这是一个青少年的自我诊断——一个叛逆的青少年。
There was times that, when I was in the doctor's office, I would see my chart, and it would just list, diagnosis muscular dystrophy, unknown etiology.
有时，当我在医生办公室时，我会看到我的图表，它只会列出，诊断肌营养不良症，病因不明。
I hated seeing that.
我讨厌看到那个。
I'd literally just take a pen out of my purse and I'd scratch it out and I'd write, Emery-Dreifuss muscular dystrophy.
我实际上只是从钱包里拿出一支笔，把它划掉，然后写下：埃默里-德莱福斯肌营养不良症。
And my mom would see me do that.
我妈妈会看到我这样做。
And she's like, you can't change your chart!
她说，你不能改变你的图表！
I want it listed what I have.
我希望它列出我所拥有的。
In a reading binge, Jill had come across a group of researchers working out of Italy.
在一次阅读狂潮中，吉尔遇到了一群在意大利工作的研究人员。
They were looking for families with Emery-Dreifuss to study, hoping to locate the gene that causes the disease.
他们正在寻找患有埃默里-德莱福斯的家庭进行研究，希望找到导致这种疾病的基因。
Jill decided to write to them.
吉尔决定写信给他们。
She mapped out a family tree, noting the symptoms she saw in her father, two younger brothers, and a younger sister.
她绘制了一个家谱，记录了她在父亲、两个弟弟和一个妹妹身上看到的症状。
Then she stripped down to her underwear.
然后她脱得只剩下内衣。
And then I set the timer on my camera and I took pictures of myself, because I thought, well, if that's how I identified it, let me send a picture.
然后我在相机上设置了定时器，给自己拍了照片，因为我想，好吧，如果我就是这样识别它的，那就让我发送一张照片吧。
And just inquired, would you want to take a look at our family?
刚才问，你想看看我们家吗？
Up to this point, the Italians had only collected four other families to study, so they were thrilled to hear from Jill and they immediately wrote back.
到目前为止，意大利人只收集了另外四个家庭进行研究，所以他们很高兴听到吉尔的消息，并立即回信。
From the letter, it seems like they think she's a scientist who has access to a lab.
从信中看，他们似乎认为她是一位可以进入实验室的科学家。
They asked, can you send us DNA?
他们问，你能把DNA发给我们吗？
If you cannot prepare DNA, just send fresh blood.
如果无法制备DNA，就送新鲜血液即可。
But 19-year-old Jill soon learned you can't just go to the local hospital and say draw my blood.
但 19 岁的吉尔很快意识到你不能只是去当地医院并说给我抽血。
I want to send it to Europe.
我想把它寄到欧洲。
So Jill convinced a nurse friend to smuggle needles and test tubes to her house.
因此吉尔说服了一位护士朋友将针头和试管偷运到她家。
They filled them up with samples of her family's blood and shipped them off to Italy.
他们在里面装满了她家人的血液样本，然后运往意大利。
Today, you can sequence an entire genome in a few days.
如今，您可以在几天内对整个基因组进行测序。
But back in the mid-1990s, not so much.
但在 20 世纪 90 年代中期，情况就没那么严重了。
It was four years before Jill heard something definitive back from the Italians.
四年后，吉尔才从意大利人那里听到了明确的答复。
They confirmed she had Emery-Dreifuss.
他们证实她患有埃默里-德莱福斯病。
She'd been right all these years, despite everyone telling her otherwise.
这些年来她一直是对的，尽管每个人都告诉她事实并非如此。
One day, I opened email, and there it was.
有一天，我打开电子邮件，它就在那里。
And that was a weird feeling to realize, OK, this is it.
当我意识到“好吧，就是这样”时，感觉很奇怪。
And I clicked on it, and they told me the name of the gene.
我点击了它，他们告诉我该基因的名称。
It was nuclear lamin.
它是核纤层蛋白。
The researchers had discovered the genetic cause of Jill's illness, a gene called the lamin gene.
研究人员发现了吉尔患病的遗传原因，一种称为核纤层蛋白基因的基因。
What makes the lamin gene really important is that it affects the command center inside every cell in your body.
核纤层蛋白基因真正重要的原因在于，它影响身体每个细胞内的指挥中心。
This turns other genes on and off like light switches, changing the way they build fat and muscle.
这就像电灯开关一样打开和关闭其他基因，改变它们构建脂肪和肌肉的方式。
Jill's lamin gene has a typo in it, a serious one.
吉尔的核纤层蛋白基因有一个拼写错误，而且是一个严重的错误。
Along the spiraling ladders of her DNA-- the 3 billion Gs, Ts, As, and Cs that make up Jill's genome-- she had one letter in the wrong place.
沿着她 DNA 的螺旋梯——构成吉尔基因组的 30 亿个 G、T、As 和 C——她有一个字母放在了错误的位置。
And it's just almost darkly comical to think, seriously?
认真想想，这几乎是黑色滑稽的？
In this quest to find, OK, well, what happened exactly, it comes down to a G was changed to a C.
在寻找到底发生了什么的过程中，归根结底是 G 变成了 C。
Soon after, Jill got an internship in a lab at Johns Hopkins that was mapping diseases associated with the lamin gene .
不久之后，吉尔在约翰霍普金斯大学的一个实验室实习，该实验室正在绘制与核纤层蛋白基因相关的疾病图谱。
The lab director had heard about Jill's research on herself and saw a chance to have not only a dogged intern in the lab, but also their very own real-life lamin mutant.
实验室主任听说了吉尔对自己的研究，并看到了一个机会，不仅可以在实验室里拥有一名顽强的实习生，还可以拥有他们自己的现实生活中的核纤层蛋白突变体。
Jill's job was to sift through scientific journals and find any references that had been linked to a lamin mutation.
吉尔的工作是筛选科学期刊并找到与核纤层蛋白突变相关的任何参考文献。
Sitting there day after day reading, she came across an incredibly rare disease, a disorder called partial lipodystrophy.
坐在那里日复一日地读书，她遇到了一种极其罕见的疾病，一种叫做部分脂肪营养不良的疾病。
It causes the arms and legs to look as if all the fat on them has been melted away, leaving veins and muscle to stand out.
它使手臂和腿看起来好像所有的脂肪都被融化了，留下静脉和肌肉突出。
Looking at photos of patients with the disease, all Jill could think was that these people looked like her family members.
看着患病患者的照片，吉尔只能想到这些人看起来像她的家人。
Could Jill and her family have not just one, but two rare genetic diseases?
吉尔和她的家人是否可能不仅患有一种，而是两种罕见的遗传病？
The odds of getting one of them was one in a million.
获得其中一个的几率是百万分之一。
The odds of getting the other is one in at least a million.
获得另一个的几率至少是百万分之一。
And the odds of getting both together?
两者结合的可能性如何？
There haven't been enough human beings in the history of our species that anyone should ever get both.
在我们人类的历史上，还没有足够多的人能够同时拥有这两种能力。
So just like before, when Jill discovered Emery-Dreifuss, she zeroed in on a photo in a medical article and saw herself in it.
就像以前一样，当吉尔发现 Emery-Dreifuss 时，她瞄准了一篇医学文章中的一张照片，并在其中看到了自己。
And just like before, she tried to get confirmation from doctors.
和以前一样，她试图得到医生的确认。
She tried to tell scientists that she had the second rare disorder, partial lipodystrophy.
她试图告诉科学家，她患有第二种罕见疾病：部分脂肪营养不良。
And just like before, they said no. They said that statistically there was very little chance that could be true.
就像以前一样，他们说不。他们表示，从统计数据来看，这种情况的可能性很小。
Instead, they diagnosed her with something a little more common.
相反，他们诊断出她患有一些更常见的疾病。
They didn't necessarily laugh at me but were kind of incredulous that, no, you don't have that.
他们不一定会嘲笑我，但有点难以置信，不，你没有那个。
And they even kind of described it as intern syndrome, where you have a medical student that's being introduced to a lot of new diseases and they keep thinking they have what they're reading about.
他们甚至将其描述为实习综合症，即一名医学生正在接触许多新疾病，并且他们一直认为自己患有他们所读到的疾病。
I just thought, well, I must be wrong.
我只是想，好吧，我一定是错的。
I think I, too, was buying into that idea that that's quite a reach to think that you have the second genetic disorder, because it's so rare, too.
我想我也相信这样的想法：认为你患有第二种遗传疾病是相当有可能的，因为它也很罕见。
I just kind of thought, well, maybe I am nuts.
我只是想，好吧，也许我疯了。
So I kind of backed away from that, even though it was kind of a deja vu feeling.
所以我有点回避这一点，尽管这是一种似曾相识的感觉。
So she dropped it.
所以她把它扔掉了。
She stopped reading about this new disease.
她不再阅读有关这种新疾病的文章。
And before long, she stopped doing research into Emery-Dreifuss, too, mostly because the research she was doing started to freak her out.
不久之后，她也停止了对埃默里-德莱福斯的研究，主要是因为她所做的研究开始让她感到害怕。
In the case studies she read, the average person with Emery-Dreifuss was dead by their early 40s.
在她读到的案例研究中，患有 Emery-Dreifuss 病的人平均在 40 岁出头时就去世了。
She was 25, and anxiety over this was landing her in the hospital.
她当时 25 岁，对此的焦虑让她住进了医院。
I had two panic attacks that were brought on by the stress of reading all of these things-- that they just died suddenly.
我有两次恐慌症发作，是由于阅读所有这些东西的压力而引起的——它们突然死了。
And I went to a counselor for a while.
我去找了辅导员一段时间。
I worked with my cardiologist.
我和我的心脏病专家一起工作。
And we decided it was just too much information.
我们认为信息太多了。
It wasn't healthy.
这不健康。
So I really just didn't look up things, didn't read articles.
所以我真的只是没有查东西，没有读文章。
And I really got to the point that I decided I want to go on with my old life.
我真的决定要继续我以前的生活。
So she went cold turkey.
所以她彻底戒掉了。
No more medical research, no more DIY diagnosis.
不再有医学研究，不再有 DIY 诊断。
She took a job as a writing instructor at local community colleges, and taught adult education classes at night.
她在当地社区大学找到了一份写作讲师的工作，并在晚上教授成人教育课程。
She started dating, eventually meeting the man who would become her husband.
她开始约会，最终遇到了后来成为她丈夫的男人。
And even though there was a 50/50 chance that she would pass on the Emery-Dreifuss gene mutation, they decided to have a child.
即使她有 50/50 的机会遗传 Emery-Dreifuss 基因突变，他们还是决定要一个孩子。
Her pregnancy was normal, and her baby, Martin, doesn't have the disease.
她的怀孕过程很正常，她的孩子马丁没有患这种疾病。
But after he was born, Jill really deteriorated physically.
但出生后，吉尔的身体状况确实恶化了。
If you've ever had a muscle twitch, you know how strange it feels to not have control of your body.
如果您曾经经历过肌肉抽搐，您就会知道无法控制身体的感觉是多么奇怪。
Jill's muscles started twitching from head to toe, sometimes for hours at a time, and she was suddenly having to hold onto her husband to steady herself.
吉尔的肌肉开始从头到脚抽搐，有时一次持续几个小时，她突然不得不抓住丈夫才能稳定自己。
The best way I can describe what it was like, it would be like where gravity is getting incredibly heavy and someone turns up the knob.
我能描述那种感觉的最好方式就是，重力变得异常沉重，有人转动旋钮。
And you think of how high would they have to turn up this gravity that I can't get up off the floor by myself, I can't stand upright, I can't take a step?
你想想他们得把重力调到多高，让我自己无法从地板上站起来，无法直立，无法迈出一步？
You know, it's a tremendous amount of force pushing on the body.
你知道，这是对身体施加巨大的力量。
By Martin's first birthday, she could barely walk.
到马丁一岁生日时，她几乎不能走路了。
One day, he was calling that he wanted macaroni and cheese.
有一天，他打电话说他想要通心粉和奶酪。
And I knew-- I had like six steps to take.
我知道——我还有六个步骤要做。
And I realized, this is it.
我意识到，就是这样。
This is the last six steps I'm going to take.
这是我要采取的最后六个步骤。
I just knew I was at that point that I was going to not be able to get up again.
我只知道我已经无法再站起来了。
At the same time, Jill's father was also losing his ability to walk.
与此同时，吉尔的父亲也失去了行走的能力。
So father and daughter transitioned to life in motorized scooters.
于是，父女俩开始了骑摩托车的生活。
Jill says her dad was discouraged for the first time in his life.
吉尔说，她的父亲有生以来第一次感到沮丧。
After a visit with a neurologist, he told her, I feel like I go there just to be weighed.
在拜访了一位神经科医生后，他告诉她，我觉得我去那里只是为了称重。
Then one day, she got a call from her mom, and it was about Dad.
有一天，她接到妈妈的电话，是关于爸爸的。
He just moved from his scooter into his favorite chair.
他刚刚从摩托车上搬到他最喜欢的椅子上。
He said to my mom he just felt tired, and then he'd simply just bowed his head and he didn't breathe again and he died.
他对我妈妈说他只是觉得累了，然后他只是低下了头，就没有再呼吸了，然后就死了。
He had a sudden cardiac death.
他因心源性猝死。
At what age was that?
那是几岁的事？
Jill Viles He was 63.
吉尔·维尔斯 63 岁。
On the day he passed away, Jill and her siblings and relatives gathered at her parents' house.
他去世的那天，吉尔和她的兄弟姐妹和亲戚聚集在她父母家。
After most of the people had gone, it was kind of slowing down.
当大部分人都走了之后，速度就慢了下来。
And my sister said, I got this to show you.
我姐姐说，我拿这个给你看。
She starts pulling up pictures of this extremely muscular athlete.
她开始调出这位肌肉发达的运动员的照片。
And I just took one look at it and just kind of went, we don't-- what?
我只是看了一眼，然后就走了，我们不——什么？
We don't have that.
我们没有那个。
I mean, what are you talking about?
我的意思是，你在说什么？
This, of course, was Priscilla.
这当然是普里西拉。
At first, Jill didn't get it, didn't see any connection with the musclebound athlete.
起初，吉尔不明白，没看出这与肌肉发达的运动员有任何联系。
It had been 12 years since she went cold turkey on medical research.
自从她彻底放弃医学研究以来，已经过去了 12 年。
But a week later, Jill got curious.
但一周后，吉尔开始好奇了。
She started googling pictures of Priscilla-- not just running photos, but shots of her at home doing regular things, like feeding her daughter baby food.
她开始在谷歌上搜索普里西拉的照片——不仅仅是跑步的照片，还有她在家做日常事情的照片，比如给女儿喂婴儿食品。
It helped seeing the clothing on her to see how it fit.
这有助于查看她身上的衣服是否合身。
It was just unmistakable.
这是毫无疑问的。
It's like a computer that could analyze a photograph and get a match, and be 100% sure that's the same shoulder.
它就像一台可以分析照片并进行匹配的计算机，并且 100% 确定这是同一个肩膀。
That's the same upper arm.
这是同一个上臂。
I see the same veins.
我看到同样的静脉。
I see them branching this way.
我看到他们这样分支。
You just know.
你只知道。
And that's hard to convey.
这很难传达。
How could you just know?
你怎么会知道？
But I knew we were very likely cut from the same cloth-- a very, very, very rare cloth.
但我知道我们很可能是用同样的布料剪裁而成的——一种非常、非常、非常罕见的布料。
It was the third time Jill saw something in a photo other people didn't see.
这是吉尔第三次在照片中看到其他人没有看到的东西。
It had happened with Emery-Dreifuss.
埃默里-德莱福斯就曾遇到过这样的情况。
It happened with lipodystrophy.
这与脂肪营养不良有关。
Now she saw that she and Priscilla were both missing fat in the same places on their arms and legs.
现在她发现她和普里西拉的胳膊和腿上的同一个地方都缺少脂肪。
They had the exact same muscle divisions in the exact same places in the hips and butt.
他们在臀部和臀部的完全相同的位置有完全相同的肌肉分区。
Jill was certain this was because they shared a mutant gene.
吉尔确信这是因为他们共享一个突变基因。
And the only question was, why did the gene blow up Priscilla with muscles and take Jill's away?
唯一的问题是，为什么基因会炸毁普里西拉的肌肉，并夺走吉尔的肌肉？
This is my kryptonite, but it's her rocket fuel.
这是我的氪石，但却是她的火箭燃料。
I mean, we're like comic book superheroes that are just as divergent as could be.
我的意思是，我们就像漫画书中的超级英雄一样，有着尽可能不同的分歧。
I mean, her body has found a way around it somehow.
我的意思是，她的身体已经找到了解决办法。
I know that sounds like the plot of a Hollywood movie.
我知道这听起来像好莱坞电影的情节。
In fact, it's totally the plot of Unbreakable, The Bruce Willis, Samuel L Jackson film.
事实上，这完全是《坚不可摧》、布鲁斯·威利斯、塞缪尔·杰克逊电影中的情节。
Jackson plays a broken-boned, physically fragile man searching for his genetic opposite, a man born so strong his body will survive any physical trauma.
杰克逊扮演一个骨折、身体脆弱的男人，寻找与他基因相反的人，一个生来如此强壮的男人，他的身体能够在任何身体创伤中幸存下来。
In the final scene, Jackson tells Willis that he's the guy.
在最后一幕中，杰克逊告诉威利斯，他就是那个人。
(SUBJECT) SAMUEL L JACKSON: It all makes sense.
（主题）塞缪尔·杰克逊：这一切都有道理。
In a comic, you know how you can tell who the arch-villain's going to be?
在漫画中，你知道如何知道谁是大反派吗？
He's the exact opposite of the hero.
他与英雄截然相反。
So Jill wanted to enlist Priscilla in her genetic detective work, but there was a practical problem.
因此吉尔想邀请普里西拉参与她的基因侦探工作，但有一个实际问题。
She had no idea how to go about reaching her.
她不知道如何联系她。
I mean, I had crazy ideas, like can I fly to Canada and show up at a meet in Greece and try to talk to her?
我的意思是，我有一些疯狂的想法，比如我可以飞往加拿大并出现在希腊的会议上并尝试与她交谈吗？
And if you're on this motorized scooter, it's like, you're just going into end up with a restraining order at best.
如果你骑着这辆电动滑板车，你最多只会收到限制令。
I mean, people will think you're crazy.
我的意思是，人们会认为你疯了。
I was just trying to resign myself to the fact that, well, what am I going to do?
我只是试图让自己接受这样一个事实：好吧，我该怎么办？
A full year passed.
整整一年过去了。
And then Jill happened to be in earshot of her television when I started yammering about athletes and genetics on Good Morning America.
然后，当我开始在《早安美国》节目中抱怨运动员和遗传学时，吉尔恰好在她的电视节目中。
Find the best fit for your unique genome, and then specialize in the--
找到最适合您独特基因组的基因组，然后专注于——
And I thought, oh, this is just divine providence.
我想，哦，这只是神圣的旨意。
This is exactly what I'm looking for.
这正是我正在寻找的。
Jill reached out to me with her request, and I did happen to have a way to get it to Priscilla-- through her agent.
吉尔向我提出了她的请求，而我恰好有办法通过她的经纪人将其传达给普里西拉。
It was such an odd request.
这是一个很奇怪的要求。
It's just really out there, right?
它真的就在那里，对吧？
He was just like, this lady, she's in Iowa.
他就像，这位女士，她在爱荷华州。
She says she has the same gene as you and wants to have a conversation.
她说她和你有相同的基因，想和你谈谈。
I was kind of like, oh, I don't know, Kris.
我有点想，哦，我不知道，克里斯。
And he's just, have a conversation.
他只是，谈谈。
See where it goes.
看看它去哪里了。
Jill sent Priscilla the same bound packet that she sent me.
吉尔给普里西拉寄了她寄给我的同一个装订包裹。
And it wasn't any of the cryptic science that got to Priscilla.
普里西拉所受的并不是任何神秘的科学。
It was the childhood stories Jill shared about kids pointing at the veins in her legs.
这是吉尔分享的童年故事，孩子们指着她腿上的静脉。
Priscilla said she always used to come home sad and crying.
普里西拉说，她总是伤心地回家，哭泣。
She'd ask her parents--
她会问她的父母——
Can I get the veins removed from my legs, because the boys are making fun of me?
因为孩子们在取笑我，我可以把腿上的静脉去掉吗？
It was just like, ew, your legs are veiny.
就像，呃，你的腿上有青筋。
Ew, why does it look like that?
呃，为什么看起来像这样？
Once she grew up, the finger-pointing didn't end.
当她长大后，对她的指责并没有结束。
It just morphed.
它只是变形了。
When people see huge, shredded muscles like Priscilla's on an athlete, it usually means one thing-- steroids.
当人们看到运动员身上像普里西拉那样巨大、破碎的肌肉时，通常意味着一件事——类固醇。
And Priscilla's been dogged by doping rumors since college.
自大学以来，普里西拉就一直受到兴奋剂谣言的困扰。
After she won the Olympic bronze medal in Beijing, some media outlets in Europe began to openly accuse her.
她在北京获得奥运会铜牌后，欧洲一些媒体开始公开指责她。
And of course, there were the not-so-furtive glances.
当然，也有不那么偷偷摸摸的目光。
You'd walk by and people kind of like would whisper, like, oh, look at her glutes, or look at her arms or her shoulders or her calves.
你走过时，人们会小声说，哦，看看她的臀部，或者看看她的手臂、肩膀或小腿。
And just like, ooh, look, look, look.
就像，哦，看，看，看。
It's more like on the intern-- I remember there was one picture that was put up.
更像是实习生——我记得贴了一张照片。
They put a big dude's face on my body and he was just like, [GROWLING], like, I'm lifting-- because I'm running and pushing towards the finish line, so I'm using every ounce, every inch, every piece of energy in my body to get to that finish line.
他们把一个大家伙的脸放在我的身上，他就像，[咆哮]，就像，我正在举起——因为我正在跑步并推向终点线，所以我正在使用我身体中的每一盎司、每一英寸、每一块能量来到达终点线。
That was pretty messed up.
那真是一团糟。
And I was really pissed about that.
我对此真的很生气。
And I got tested.
我接受了测试。
I felt like I was targeted, because I got tested so much for track and field.
我感觉自己被针对了，因为我在田径方面接受了如此多的考验。
And I think a lot of people really, honestly, truly believed that I was taking steroids.
我认为很多人真的、诚实地、真的相信我正在服用类固醇。
At the world championships in Berlin in 2009, Priscilla was drug-tested just minutes before winning a silver medal.
2009 年柏林世锦赛上，普里西拉在获得银牌前几分钟接受了药检。
There's not even supposed to be any drug testing that close to the race.
甚至不应该在比赛临近时进行任何药物测试。
Then the following month, at a meet-and-greet, someone stole her training journal out of her bag.
接下来的一个月，在一次见面会上，有人从她的包里偷走了她的训练日记。
It was at the very bottom, underneath expensive workout clothes and shoes, none of which were taken.
它在最底层，在昂贵的运动服和鞋子下面，但没有一件被拿走。
Why steal a training journal?
为什么要偷训练日记？
As someone who's covered a lot of doping stories, I'm convinced someone thought the journal contained her steroid regimen.
作为一个报道过很多兴奋剂故事的人，我确信有人认为该杂志包含了她的类固醇疗法。
Priscilla and Jill spent a lot of time talking on the phone.
普里西拉和吉尔花了很多时间在电话上交谈。
And eight months after I first put them in touch, they finally met in person in Toronto, where Priscilla lived.
在我第一次与他们取得联系八个月后，他们终于在普里西拉居住的多伦多见面了。
They picked a hotel lobby.
他们选了一个酒店大堂。
Jill arrived first.
吉尔先到了。
So it got to be a few minutes past the time we were going to meet, and then a couple more minutes.
所以我们见面的时间肯定已经过去了几分钟，然后又过了几分钟。
And I started to get really scared, because I'm like, I have so much riding on this.
我开始变得非常害怕，因为我想，我对此有太多的期望。
I was just watching the doors like, OK, is this her?
我只是看着门，心想，好吧，这是她吗？
Is this her?
这是她吗？
I wasn't sure.
我不确定。
And I see this lady that, oh, my gosh, this is like seeing family.
我看到这位女士，哦，天哪，这就像看到家人一样。
Priscilla felt the same way.
普里西拉也有同样的感觉。
Priscilla Lopes-Schliep It really was just like a wow moment-- like "do I know you?" kind of thing.
Priscilla Lopes-Schliep 这真的就像一个令人惊叹的时刻——就像“我认识你吗？”之类的事情。
So then we started talking, just giggling about it, like, OK, I'm going to flex for you.
然后我们开始聊天，只是咯咯地笑，就像，好吧，我要为你弯曲。
And then it's a little harder for her to get her sweater off, so she's pulling her sweater off to show me.
然后她脱掉毛衣就有点困难了，所以她把毛衣脱下来给我看。
She's like, see?
她就像，看到了吗？
I do have the definition, too.
我也有定义。
I'm like, you do.
我就像，你也一样。
You do.
你做。
But she's like, but it's a lot smaller than yours.
但她的样子，却比你的小很多。
And then we'd kind of giggle.
然后我们就会咯咯地笑。
But it was still like, OK, there's something real.
但我仍然觉得，好吧，有一些真实的东西。
There's something here.
这里有东西。
Let's research and let's find out because how could the gene do this to you and do this to me?
让我们研究一下，找出答案，因为基因是如何对你和我这样做的？
That was where my question was.
这就是我的问题所在。
I'm like, how?
我想，怎么样？
It took a year to find a doctor to test Priscilla.
花了一年的时间才找到一位医生来给普里西拉做检查。
Finally, Jill went to a medical conference and approached the foremost expert in lipodystrophy, Dr. Abhimanyu Garg, who runs a lab at University of Texas Southwestern Medical Center.
最后，吉尔参加了一次医学会议，并找到了脂肪代谢障碍领域最重要的专家阿比曼尤·加格 (Abhimanyu Garg) 博士，他在德克萨斯大学西南医学中心经营着一个实验室。
He agreed to do the testing.
他同意进行测试。
The results showed that Jill had been right.
结果证明吉尔是对的。
She and Priscilla do have a genetic connection.
她和普里西拉确实有血缘关系。
They each have a single typo on the same one of our 23,000 genes, the lamin gene.
它们各自在我们 23,000 个基因中的同一个基因（核纤层蛋白基因）上都有一个拼写错误。
It's not the exact same typo, but they're almost right next to each other.
这不是完全相同的拼写错误，但它们几乎彼此相邻。
That splinter of distance and typo location makes the difference between Jill's muscles and Priscilla's muscles.
距离和打字位置的差异造成了吉尔的肌肉和普里西拉的肌肉之间的差异。
It's why Jill has Emery-Dreifuss and Priscilla doesn't.
这就是为什么吉尔拥有 Emery-Dreifuss，而普里西拉却没有。
But Dr. Garg also found that they do share a disease.
但加格博士还发现，他们确实患有同一种疾病。
They both have the exact same rare subtype of lipodystrophy, the disease that wastes away fat.
他们都患有完全相同的罕见脂肪营养不良亚型，这种疾病会消耗脂肪。
Jill had been told it had nothing to do with her back when she was a summer intern at Johns Hopkins.
当吉尔在约翰·霍普金斯大学暑期实习时，她被告知这与她的背部无关。
Jill had been right about that all along.
吉尔在这一点上一直都是对的。
Dr. Garg called Priscilla immediately to give her the news.
加格医生立即打电话给普里西拉，告诉她这个消息。
He caught her at the mall shopping with her kids.
他发现她和孩子们在商场购物。
I was just dreaming about going and getting a big juicy burger and fries.
我只是梦想着去买一个大的多汁的汉堡和薯条。
And Dr. Garg calls me and says, I have your results.
加格博士打电话给我说，我收到了你的结果。
I'm like, OK.
我想，好吧。
And then I was like, can I call you back, because I'm in the mall right now?
然后我就想，我可以给你回电话吗，因为我现在在商场里？
He goes, um, no, it's kind of important.
他说，嗯，不，这很重要。
Are you about to go eat lunch?
你要去吃午饭了吗？
And I was like, yes.
我当时想，是的。
He's like, you're only allowed to have salad.
他说，你只能吃沙拉。
You're on track for a pancreatitis attack.
您的胰腺炎即将发作。
And I was like, say what?
我当时想，说什么？
Then he told Priscilla that, despite her rigorous training regimen, her untreated lipodystrophy left her with 15 times the normal amount of fat in her blood.
然后他告诉普里西拉，尽管她接受了严格的训练，但未经治疗的脂肪营养不良导致她血液中的脂肪含量是正常水平的 15 倍。
Her next hamburger could land her in the emergency room.
她的下一个汉堡可能会让她进急诊室。
She was that close.
她是如此接近。
In other words, once again, Jill steered someone away from a medical disaster.
换句话说，吉尔再一次让某人远离了医疗灾难。
She'd saved her dad's life.
她救了她父亲的命。
Now, using the cutting-edge medical tool known as Google Images, she caused the most intense medical intervention in the life of this professional athlete.
现在，她利用名为谷歌图像的尖端医疗工具，对这位职业运动员进行了一生中最强烈的医疗干预。
That's when I was just like, oh, my gosh.
那时我就想，哦，天哪。
If this wasn't for Jill, I would definitely have been in the hospital.
如果不是吉尔，我肯定已经住院了。
And I called her and I told her.
我打电话给她并告诉了她。
I was like, you pretty much just saved me from having to go to the hospital.
我当时想，你几乎让我免去了去医院的麻烦。
And she goes, what?
她走了，什么？
I go, Dr. Garg told me that I have the gene and my numbers are out of the roof.
我去，加格博士告诉我，我有这个基因，而且我的数字已经很高了。
Scientists can learn all sorts of things by studying very rare genetic diseases.
科学家可以通过研究非常罕见的遗传疾病来了解各种各样的事情。
For instance, research on a rare gene mutation that gives people freakishly low cholesterol levels led to a drug that treats high cholesterol.
例如，对一种罕见基因突变的研究使人们的胆固醇水平异常低，从而产生了一种治疗高胆固醇的药物。
An Alzheimer's treatment might come from studying a small group of people in Iceland.
阿尔茨海默氏症的治疗可能来自对冰岛一小群人的研究。
They have a super-rare mutation that protects their brains.
他们有一种超级罕见的突变，可以保护他们的大脑。
Recently, a group of scientists started something called the Matchmaker Exchange.
最近，一群科学家发起了一项名为“媒人交换”的活动。
It's a kind of OkCupid for rare diseases, where people can share genetic and symptom information with each other and doctors.
它是一种针对罕见疾病的 OkCupid，人们可以在其中与彼此和医生分享遗传和症状信息。
The hope is that it will spark new discoveries.
希望它能激发新的发现。
It's just the willpower of Jill that have made things possible.
正是吉尔的意志力使这一切成为可能。
That's Etienne Lefai, a molecular biologist in France.
那是艾蒂安·勒法伊 (Etienne Lefai)，法国分子生物学家。
He does super-technical work on a protein with the lovely name SREBP-1.
他对一种名为 SREBP-1 的蛋白质进行了超级技术研究。
It affects fat storage.
它会影响脂肪储存。
And his research team showed that messing around with it can create mice with almost no muscle at all, or potentially little rodent Schwarzeneggers.
他的研究小组表明，乱搞它可以创造出几乎没有肌肉的老鼠，或者可能是小啮齿动物施瓦辛格。
When Jill first reached him, she told him that he may have found the actual biological mechanism that makes her and Priscilla so different.
当吉尔第一次找到他时，她告诉他，他可能已经找到了让她和普里西拉如此不同的实际生物机制。
OK, that triggers a kind of reflection from my side, saying, that's a really good question.
好吧，这引发了我的反思，我说，这是一个非常好的问题。
That's a really, really good question, because I have no idea of what I can do with genetic diseases before she contacted me.
这是一个非常非常好的问题，因为在她联系我之前，我不知道我能对遗传疾病做些什么。
Now I have changed the path of my team, research object.
现在我改变了我的团队的路径、研究对象。
And this is only because Jill contacted me two years ago.
这只是因为吉尔两年前联系过我。
She's totally awesome.
她太棒了。
And have you ever had the experience of someone outside the scientific community affecting your research agenda in this kind of way?
您是否有过科学界以外的人以这种方式影响您的研究议程的经历？
In my life, no. People from outside coming and giving me hopes, new ideas-- I have no other example of these kind of things.
在我的生活中，没有。外来的人给了我希望、新的想法——我没有其他这样的例子。
You know, maybe it happens once in a scientific life.
你知道，也许这种事在科学生涯中只会发生一次。
Of course, this is so different than the skepticism Jill's gotten from scientists and doctors for decades.
当然，这与几十年来吉尔从科学家和医生那里得到的怀疑有很大不同。
I checked back in with one of the doubters, Robert Green-- you know, the geneticist at Harvard I first talked to who was so incredulous about any genetic connection between Jill and Priscilla.
我又询问了其中一位怀疑者罗伯特·格林（Robert Green）——你知道，我第一次采访的是哈佛大学的遗传学家，他非常怀疑吉尔和普里西拉之间有任何遗传联系。
I email him the results of Priscilla's genetic test.
我通过电子邮件将普里西拉的基因测试结果发送给他。
Oh, I was knocked over.
哦，我被撞倒了。
I was completely and utterly astounded.
我完全震惊了。
And I remember thinking I was ashamed that I had doubted this individual because she turned out to have a remarkable discovery.
我记得我当时想，我为自己怀疑这个人而感到羞愧，因为她有一个非凡的发现。
About a week after I talked to Doctors Green and Lefai, I played those conversations back for Jill
大约在我与 Green 医生和 Lefai 医生交谈一周后，我为 Jill 回放了这些对话
[CRYING] David Epstein Could you hear that OK?
[哭泣] 大卫·爱泼斯坦 你能听到吗？
Yeah, I could hear that.
是的，我能听到。
David Epstein So what's in your mind when you hear that?
大卫·爱泼斯坦 那么当你听到这个消息时你会想到什么？
It really does feel really good.
确实感觉非常好。
Wow.
哇。
It's kind of like this weight come off of me.
有点像我身上的重量减轻了。
So I'm exhausted emotionally and intellectually, and in every way possible.
所以我在情感上和智力上都精疲力竭了。
I am so happy.
我很高兴。
I don't want to be the crazy person that's on the internet all the time coming in.
我不想成为那个一直上网的疯子。
I really feel confident we can go somewhere with this.
我真的很有信心我们可以做到这一点。
And I've got some really great people.
我有一些非常优秀的人。
Jill says she's proved her point.
吉尔说她已经证明了自己的观点。
She says she's retiring from DIY medical research.
她说她将从 DIY 医学研究中退休。
She gave me the same line that professional athletes use.
她给了我与职业运动员使用的相同的线条。
"I want to spend more time with my family." But her mother doesn't believe she's retiring, nor does Dr. Lefai.
“我想花更多的时间和家人在一起。”但她的母亲不相信她会退休，勒法伊博士也不相信。
And I certainly don't believe her.
我当然不相信她。
Recently, Jill sent me an email.
最近，吉尔给我发了一封电子邮件。
She picked up on a tidbit in a very technical scientific paper about potentially reversing muscular dystrophy.
她在一篇技术性很强的科学论文中发现了一个关于可能逆转肌肉萎缩症的花絮。
"I don't want to read too much into this," she wrote me, "but, of course, I'm curious."
“我不想对此做太多解读，”她写信给我，“但是，当然，我很好奇。”
David Epstein.
大卫·爱泼斯坦。
The book that he wrote that kicked all this off is The Sports Gene-- Inside the Science of Extraordinary Athletic Performance.
他写的这本书是《运动基因——非凡运动表现科学的内部》，这本书开启了这一切。
He has more about Jill and Priscilla, including jaw-dropping photos, at propublica.org.
他在 propublica.org 上有更多关于吉尔和普里西拉的信息，包括令人瞠目结舌的照片。
In the years since we first ran this story, as predicted, Jill has gone back to the research game.
正如预测的那样，自从我们第一次报道这个故事以来的几年里，吉尔又回到了研究游戏中。
She still talks to Priscilla, who recently retired from track and field.
她仍然与最近从田径场退役的普里西拉交谈。
Coming up.
即将到来。
OK, you know how we started today's program with the color green that was not green?
好吧，你知道我们今天的节目是如何用不是绿色的绿色开始的吗？
After the break, Tig Notaro finds a joke that is also not a joke.
休息后，蒂格·诺塔罗发现了一个也不是笑话的笑话。
That's from WBEZ Chicago when our program continues.
这是我们的计划继续进行时来自芝加哥 WBEZ 的信息。
Act Two: Mom Jokes Ira Glass It's This American Life.
第二幕：妈妈开玩笑艾拉·格拉斯这就是美国生活。
I'm Ira Glass.
我是艾拉·格拉斯。
Each week on our program, of course, we choose a theme, bring you different kinds of stories on that theme.
当然，我们每周的节目都会选择一个主题，为您带来有关该主题的不同类型的故事。
Today's show, "Something Only I Can See." We have stories of people who spot something that no one else has noticed and then feel compelled to tell somebody, show somebody, do something about it.
今天的节目是《只有我能看到的东西》。我们有这样的故事：人们发现了其他人没有注意到的东西，然后觉得有必要告诉别人、向别人展示、为此做点什么。
We've arrived at Act Two of our program.
我们已经到了节目的第二幕了。
Act Two, Mom Jokes.
第二幕，妈妈笑话。
So comedians don't usually laugh at their own jokes as a rule.
所以喜剧演员通常不会因为自己的笑话而发笑。
It's gauche.
这是粗俗的。
It makes things less funny as a rule.
一般来说，这会让事情变得不那么有趣。
But, as Van Halen once said, "rules are for fools." Tig Notaro has been on our program before.
但是，正如范海伦曾经说过的那样，“规则是给傻瓜准备的”。蒂格·诺塔罗以前曾参加过我们的节目。
She talked to Nancy Updike about a recent rule-breaking addition to one of her stand-up shows.
她与南希·厄普代克谈论了最近在她的一场单口秀中添加的一项违反规则的内容。
As we know, 58% of all important events in America start in the car.
众所周知，美国 58% 的重要活动都是在汽车中开始的。
Tig and her fiancee Stephanie were driving along with--
蒂格和她的未婚妻斯蒂芬妮开车同行——
Her mother, her sister, my stepfather, and my brother.
她的母亲、她的妹妹、我的继父和我的兄弟。
And we were in New Orleans.
我们在新奥尔良。
And--
还有——
This is a big car.
这是一辆大车。
Tig Notaro Yeah, we had an SUV.
Tig Notaro 是的，我们有一辆 SUV。
And my fiancee, her mother was telling us this joke that she had come up with.
我的未婚妻，她的母亲正在给我们讲她想出的这个笑话。
And in trying to tell the joke that she had made up, she was laughing so hard she couldn't get the joke out.
当她试图讲她编的笑话时，她笑得太厉害了，以至于无法把笑话讲出来。
This went on for a couple of minutes-- laughing, catching her breath, almost starting to tell the joke, and then more uncontrollable laughing, until everyone in the car was laughing just watching her trying to tell the joke.
这样持续了几分钟——她大笑，屏住呼吸，几乎要开始讲笑话了，然后笑得更无法控制，直到车里的每个人都笑了，只是看着她试图讲笑话。
I don't know that I've ever written a joke this funny.
我不知道我曾经写过这么有趣的笑话。
This is like--
这就像——
Right.
对。
This is my job and I have never made somebody laugh as hard as you are making your own self laugh.
这是我的工作，我从来没有像你让自己开怀大笑那样让别人开怀大笑。
Exactly.
确切地。
It's just like, come on, Carol.
就像，来吧，卡罗尔。
What is this joke?
这是什么玩笑？
And then Tig had a vision of what needed to happen at her next stand-up show.
然后蒂格对她的下一场单口秀需要发生的事情有了一个愿景。
It became very apparent to me.
这对我来说变得非常明显。
I just thought, oh, my gosh, I have to have her on my show to tell her joke, whatever it is.
我只是想，哦，天哪，我必须让她出现在我的节目中，给她讲笑话，不管是什么。
Before she got to the joke?
在她开始开玩笑之前？
Before she even told the joke?
在她讲笑话之前？
Oh, yeah.
哦，是的。
Nancy Updike Just while she was laughing?
南希·厄普代克 就在她笑的时候？
Oh, boy.
哦，男孩。
Coming to the stage, please welcome my girlfriend's mother, Carol Ashton.
上台，请欢迎我女朋友的母亲卡罗尔·阿什顿。
[ENTRANCE MUSIC] Nancy Updike Two weeks after the car ride, Tig made her vision come true.
[入场音乐] 南希·厄普代克 (Nancy Updike) 开车两周后，蒂格 (Tig) 实现了她的愿景。
Carol walks onto the stage of a comedy club in Los Angeles called Largo.
卡罗尔走上洛杉矶一家名为 Largo 的喜剧俱乐部的舞台。
She's not in jeans.
她没穿牛仔裤。
She's not in comedy club casual.
她不是在喜剧俱乐部休闲。
She is a tasteful mom in cropped white pants carrying her purse.
她是一位穿着九分裤、拎着钱包、有品位的妈妈。
She is a civilian.
她是一名平民。
Yeah, how are you feeling?
是啊，你感觉怎么样？
Carol Ashton Well, I can't really describe how I'm feeling, because I've never felt this emotion before.
卡罗尔·阿什顿：好吧，我无法真正描述我的感受，因为我以前从未感受过这种情绪。
So I don't know what it is.
所以我不知道它是什么。
Carol knew two things about her own joke when she walked onto the stage.
当卡罗尔走上舞台时，她对自己的笑话知道两件事。
She knew that it was not a very good joke.
她知道这不是一个很好的玩笑。
She told Tig when Tig was trying to convince her to come on stage.
当蒂格试图说服她上台时，她告诉了蒂格。
She said, this is nuts.
她说，这太疯狂了。
Nobody's going to laugh.
没有人会笑。
Carol also knew that she herself could not tell the joke without laughing.
卡罗尔也知道她自己讲这个笑话时不可能不笑。
She was living the mystery many of us have lived-- the all-the-way-inside joke.
她过着我们许多人都过着的神秘生活——一个彻头彻尾的内心笑话。
The joke that is funny beyond reason in your head and you cannot communicate the funniness, because you don't even understand it.
你脑子里有一个滑稽得无法解释的笑话，但你却无法表达出其中的滑稽之处，因为你根本不明白它的意思。
That's what Carol knew.
这就是卡罗尔所知道的。
So she was nervous.
所以她很紧张。
Can you tell me how and when you thought of the joke?
你能告诉我你是如何以及何时想到这个笑话的吗？
OK.
好的。
Well, first, I would feel a lot more comfortable--
嗯，首先，我会感觉舒服很多——
If I left?
如果我离开呢？
Carol Ashton No. Actually, I would feel a lot less uncomfortable if--
卡罗尔·阿什顿 不。事实上，如果——
If everyone left.
如果大家都离开了。
Carol Ashton Yeah.
卡罗尔·阿什顿 是的。
But if you told them this was not my idea.
但如果你告诉他们这不是我的主意。
Oh, they know that one-- was there one person at all here tonight?
哦，他们知道——今晚有人在这里吗？
Do not be shy.
不要害羞。
Raise your hand if you think Carol Ashton said, hey, Tig.
如果您认为卡罗尔·阿什顿说过“嘿，蒂格”，请举手。
It's Carol.
是卡罗尔。
I have got some stand-up that is going to blow your mind.
我有一些脱口秀节目会让你大吃一惊。
Carol, I can't just put you on stage at Largo.
卡罗尔，我不能让你在 Largo 的舞台上。
Wait till you hear the joke, kid.
等你听到这个笑话了，孩子。
Kid?
孩子？
Must be good.
一定很好。
Nobody here thinks that you asked to be here.
这里没有人认为是你要求来这里的。
Were you driving along and the idea came to you?
你是在开车的时候突然想到这个主意的吗？
Yeah, I was driving alone, and I got this great idea.
是的，我一个人开车，想到了这个好主意。
I thought, this is a very funny joke.
我想，这是一个非常好笑的笑话。
Which is why you're here tonight, Carol.
这就是你今晚来这里的原因，卡罗尔。
I'm here!
我在这儿！
First, I have to explain, though.
首先，我必须解释一下。
It's kind of like--
这有点像——
OK.
好的。
Go ahead.
前进。
Set it up.
设置一下。
Carol Ashton That it's like a play on words.
卡罗尔阿什顿 这就像一个文字游戏。
It's good to explain what genre the joke is.
最好解释一下这个笑话是什么类型。
Don't let them figure it out.
别让他们发现了。
You tell them.
你告诉他们。
Tell them, Carol.
告诉他们，卡罗尔。
Right.
正确的。
Well, Stephanie said, it's like that Lou Gehrig joke, where it's, gee, what are the odds of Lou Gehrig getting Lou Gehrig's disease?
嗯，斯蒂芬妮说，这就像卢伽雷的笑话一样，天哪，卢伽雷患上卢伽雷病的几率有多大？
It's that kind of joke.
就是这样的笑话。
So I'm driving along and it came to me about-- the only problem is it's about somebody that's not really in the news-- well, never really in the news, but in the public eye anymore.
所以我一边开车，一边想到——唯一的问题是，这个人并没有真正出现在新闻中——嗯，从来没有真正出现在新闻中，而是出现在公众的视野中。
OK.
好的。
So it is out of date?
那么它已经过时了吗？
Carol Ashton Yeah.
卡罗尔·阿什顿 是的。
It's out of date.
它已经过时了。
That's the downside.
这就是缺点。
All right.
好的。
So we got the genre.
所以我们得到了这种类型。
We've established that this is completely out-of-date material.
我们已经确定这是完全过时的材料。
Not right now.
现在不行。
Nancy Updike Of course, everything Carol is doing is usually comedy death-- explaining the joke, exposing the machinery of it-- and she is killing.
南希·厄普代克 当然，卡罗尔所做的一切通常都是喜剧死亡——解释笑话，揭露它的机制——而她正在杀人。
Well-- Carol Ashton That's necessary, right?
嗯——卡罗尔阿什顿 这是必要的，对吧？
It's your joke.
这是你的笑话。
I-- Carol Ashton OK, so the joke is about Paris Hilton.
我——卡罗尔·阿什顿 好吧，这个笑话是关于帕丽斯·希尔顿的。
See what I mean?
明白我的意思吗？
Like, Paris Hilton's dead now.
就像，帕丽斯·希尔顿现在死了。
So yeah, it's about Paris Hilton.
是的，这是关于帕丽斯·希尔顿的。
And so this is the joke.
这就是笑话。
Who would name their kid--
谁会给他们的孩子命名——
Tig Notaro That is always part of the joke.
蒂格·诺塔罗（Tig Notaro） 这始终是笑话的一部分。
She laughs at herself for two minutes.
她自嘲了两分钟。
I'm sorry.
对不起。
Nancy Updike Carol's rocking backward and slapping her knee, she's laughing so hard.
南希·厄普代克·卡罗尔向后摇晃，拍着膝盖，笑得很厉害。
She has spent the last 10 minutes giving caveats, laying out everything the joke has going against it, why it's no good.
她在最后 10 分钟里给出了一些警告，列出了这个笑话的所有反对之处，以及为什么它不好。
And then when the joke comes into her head, as she's about to tell it, none of that matters.
然后，当她正要讲这个笑话时，她的脑海中浮现出这个笑话，一切都不再重要了。
[LAUGHING] Who would name their kid after a hotel chain?
[笑]谁会用连锁酒店的名字给自己的孩子命名？
I know who.
我知道是谁。
The same people that would name their kid after a famous city in France.
这些人会以法国的一座著名城市为自己的孩子命名。
I think it's so funny.
我觉得这很有趣。
I mean, when I got off stage that night, I don't know if it was Flanagan, the owner of Largo, but somebody was like, I think that was the biggest response that they'd ever heard in that room.
我的意思是，当我那天晚上走下舞台时，我不知道那是不是 Largo 的老板弗拉纳根 (Flanagan)，但有人说，我认为这是他们在那个房间里听到的最大的回应。
It was almost like one of the biggest comedians in the world made a guest appearance on my show.
这几乎就像世界上最伟大的喜剧演员之一在我的节目中客串一样。
All jokes start as inside jokes, inside someone's head.
所有的笑话都始于某人头脑中的内部笑话。
Some of them make it out into the world and catch on, and that's comedy, the way it usually works.
他们中的一些人进入了这个世界并流行起来，这就是喜剧，它通常的运作方式。
This was a rare chance to root for the other kind of joke-- the nonstarter, the crush no one understands, including you.
这是一个难得的机会来支持另一种笑话——失败者，没有人理解的迷恋，包括你。
Your rational brain can make its rational arguments, and then what?
你的理性大脑可以做出理性的论证，然后呢？
You stop having feelings you don't understand?
你不再有你不理解的感觉了吗？
No.
不。
Nancy Updike is one of the producers of our program.
南希·厄普代克是我们节目的制作人之一。
Tig Notaro's book, I'm Just a Person, came out last summer.
蒂格·诺塔罗的书《我只是一个人》于去年夏天出版。
Act Three, Earth Angel.
第三幕，地球天使。
So we close today's program with this story about somebody who sees and believes something that nobody else does.
因此，我们以这个故事来结束今天的节目，这个故事讲述的是一个人看到并相信了别人没有做过的事情。
From Etgar Keret, it's read for us by actor Alex Karpovsky.
演员 Alex Karpovsky 为我们朗读了 Etgar Keret 的作品。
On Bernadette Avenue, right next to the central bus station, there's a hole in the wall.
在伯纳黛特大道上，中央公交车站旁边，墙上有一个洞。
There used to be an ATM there once, but it broke or something, or else nobody ever used it.
那里曾经有一台自动取款机，但它坏了或者什么的，或者没有人使用过它。
So the people from the bank came in a pickup and took it and never brought it back.
于是银行的人开着一辆皮卡车来拿走了它，然后就再也没有把它带回来。
Somebody once told Udi that if you scream a wish into this hole, it comes true.
有人曾经告诉乌迪，如果你向这个洞里大声喊出一个愿望，它就会实现。
But Udi didn't really buy that.
但乌迪并不真正相信这一点。
The truth is that once, on his way home from the movies, he screamed into the hole in the wall that he wanted Daphne Remalt to fall in love with him, and nothing happened.
事实是，有一次，在看完电影回家的路上，他对着墙上的洞尖叫，他想让达芙妮·雷马尔特爱上他，但什么也没发生。
And once, when he was feeling really lonely, he screamed into the hole in the wall that he wanted to have an angel for a friend.
有一次，当他感到非常孤独时，他对着墙上的洞尖叫，他想要一个天使作为朋友。
And an angel really did show up right after that, but he was never much of a friend.
在那之后，天使确实出现了，但他从来都不是一个朋友。
And he'd always disappear just when Udi really needed him.
当乌迪真正需要他的时候，他总是会消失。
This angel was skinny and all stooped, and he wore a trench coat the whole time to hide his wings.
这个天使瘦瘦的，弯着腰，一直穿着一件风衣来隐藏他的翅膀。
People in the street were sure he was a hunchback.
街上的人都确信他是个驼背。
Sometimes when they were just the two of them, he'd take the coat off.
有时只有他们两个人的时候，他会把外套脱掉。
Once, he even let Udi touch the feathers on his wings, but when there was anyone else in the room, he always kept it on.
有一次，他甚至让乌迪触摸他翅膀上的羽毛，但当房间里有其他人时，他总是保持着。
Kids asked him once what he had under his coat, and he said it was a backpack full of books that didn't belong to him and that he didn't want them to get wet.
有一次孩子们问他外套底下有什么，他说那是一个背包，里面装满了不属于他的书，他不想让它们被弄湿。
Actually, he lied all the time.
事实上，他一直在撒谎。
He told Udi such stories you could throw up-- about places in heaven; about people who, when they go to bed at night, leave the keys in the ignition; about cats who aren't afraid of anything and don't even know the meaning of scat.
他给乌迪讲了一些你可能会吐出来的故事——关于天堂的地方；关于天堂的故事；关于天堂的故事。关于那些晚上睡觉时将钥匙留在点火开关中的人；关于那些什么都不怕，甚至不知道粪便的含义的猫。
The stories he made up were something else.
他编造的故事是另外一回事。
And to top it all, he'd cross-his-heart-and-hope-to-die.
最重要的是，他会在心中划十字，并希望死去。
Udi was nuts about him and always tried hard to believe him, even lent him some money a couple of times when he was hard up.
乌迪对他很着迷，总是努力相信他，甚至在他手头拮据的时候借给他一些钱。
As for the angel, he didn't do a thing to help Udi.
至于天使，他并没有做任何事来帮助乌迪。
He just talked and talked and talked, rambling off his harebrained stories.
他只是滔滔不绝地讲着他那些轻率的故事。
In the six years he knew him, Udi never saw him so much as rinse a glass.
在认识他的六年里，乌迪从来没有见过他，连冲洗玻璃杯都没有。
When Udi was in the army in basic training and really needed someone to talk to, the angel suddenly disappeared on him for two solid months.
当乌迪在军队接受基础训练，确实需要有人倾诉时，天使突然在他身上消失了整整两个月。
Then he came back with an unshaven, don't-ask-what-happened face.
然后他回来了，脸上胡子拉碴，别问发生了什么。
So Udi didn't ask, and on Saturday they sat around on the roof in their underpants just taking in the sun and feeling low.
所以乌迪没有问，周六他们穿着内裤坐在屋顶上，只是晒着太阳，心情很低落。
Udi looked at the other rooftops with the cable hookups and the solar heaters and the sky.
乌迪看着其他带有电缆连接的屋顶、太阳能加热器和天空。
It occurred to him suddenly that, in all their years together, he'd never once seen the angel fly.
他突然想到，在他们在一起的这些年里，他从来没有见过天使飞翔。
"How about flying around a little?" he said to the angel.
“飞一圈怎么样？”他对天使说。
"It would make you feel better."
“这会让你感觉好一些。”
And the angel said, "forget it.
天使说：“算了吧。
What if someone sees me?"
万一有人看到我怎么办？”
"Be a sport," Udi nagged.
“做一项运动，”乌迪唠叨道。
"Just a little.
“就一点点。
For my sake." But the angel just made this disgusting noise from the inside of his mouth and shot a gob of spit and white phlegm at the tar-covered roof.
为了我。”但天使只是从嘴里发出了令人作呕的声音，并向焦油覆盖的屋顶喷射出一口唾沫和白色的痰。
"Never mind," Udi sulked.
“没关系，”乌迪生气了。
"I bet you don't know how to fly, anyway."
“无论如何，我打赌你不会飞。”
"Sure I do," the angel shot back.
“我当然愿意，”天使回击道。
"I just don't want people to see me, that's all."
“我只是不想让别人看到我，仅此而已。”
On the roof across the way they saw some kids throwing a water bomb.
他们看到对面的屋顶上有几个孩子在扔水弹。
"You know," Udi smiled.
“你知道的，”乌迪微笑道。
"Once, when I was little, before I met you, I used to come up here a lot and throw water bombs on people in the street below.
“有一次，当我还小的时候，在遇见你之前，我经常来这里，向下面街上的人扔水弹。
I'd aim them into the space between that awning and the other one," he explained, bending over the railing and pointing down at the narrow gap between the awning over the grocery store and the one over the shoe store.
我会把它们瞄准那个遮阳篷和另一个遮阳篷之间的空间，”他解释道，弯下腰，指着杂货店上方的遮阳篷和鞋店上方的遮阳篷之间的狭窄缝隙。
"People would look up, and all they'd see was the awning.
“人们抬头一看，只能看到遮阳篷。
They wouldn't know where it was coming from."
他们不知道它是从哪里来的。”
The angel got up too and looked down into the street.
天使也站了起来，俯视着街道。
He opened his mouth to say something.
他张开嘴想要说些什么。
Suddenly, Udi gave him a little shove from behind, and the angel lost his balance.
突然，乌迪从后面轻轻推了他一下，天使失去了平衡。
Udi was just fooling around.
乌迪只是在开玩笑。
He didn't really mean to hurt the angel, just to make him fly a little, for laughs.
他并不是真的想伤害天使，只是想让他飞一点，笑一笑。
But the angel dropped the whole five floors, like a sack of potatoes.
但天使像一袋土豆一样从五层楼掉了下来。
Stunned, Udi watched him lying there on the sidewalk below.
乌迪震惊地看着他躺在下面的人行道上。
His whole body was completely still, except the wings, that were still fluttering a little.
他的整个身体完全静止了，除了翅膀还在微微颤动。
That's when he finally understood that, of all the things the angel had told him, nothing was true.
就在那时，他终于明白，在天使告诉他的所有事情中，没有一件是真的。
That he wasn't even an angel, just a liar with wings.
他甚至不是天使，只是一个长着翅膀的骗子。
Alex Karpovsky reading Etgar Keret's story, "Hole in the Wall," which is collected in his book of short stories called The Bus Driver Who Wanted to be God.
亚历克斯·卡波夫斯基正在阅读埃特加·凯雷特的故事《墙上的洞》，该故事收录在他的短篇小说集中《想成为上帝的公交车司机》中。
Our program was produced today by Stephanie Foo with Zoe Chace, Sean Cole, Neil Drumming, Chana Joffe-Walt, Miki Meek, Jonathan Menjivar, Robyn Semien, Alyssa Shipp, and Nancy Updike.
今天我们的节目由 Stephanie Foo 与 Zoe Chace、Sean Cole、Neil Drumming、Chana Joffe-Walt、Miki Meek、Jonathan Menjivar、Robyn Semien、Alyssa Shipp 和 Nancy Updike 共同制作。
Our senior producer for today's show is Brian Reed.
我们今天节目的高级制片人是布莱恩·里德。
Editing help for today's show from Joel Lovell and Julie Snyder.
乔尔·洛弗尔和朱莉·斯奈德为今天的节目提供编辑帮助。
Our technical director is Matt Tierney.
我们的技术总监是马特·蒂尔尼。
Production help from Emmanuel Dzotsi and Diane Wu.
Emmanuel Dzotsi 和 Diane Wu 提供制作帮助。
Research help from Christopher Swetala and Lu Fong.
Christopher Swetala 和 Lu Fong 提供了研究帮助。
Musical help today from Damien Graef and Rob Geddis.
今天达米安·格雷夫 (Damien Graef) 和罗布·格迪斯 (Rob Geddis) 提供音乐帮助。
[ACKNOWLEDGEMENTS] Jeff Emtman, who you heard at the beginning of our program-- the guy who saw a green that was not green-- is the host of Here Be Monsters, a podcast about fear and the unknown from KCRW.
[致谢] Jeff Emtman，您在我们节目开始时听到的那个人，他看到了不是绿色的绿色，他是《Here Be Monsters》的主持人，这是一个来自 KCRW 的关于恐惧和未知的播客。
Our website, thisamericanlife.org.
我们的网站 thisamericanlife.org。
This American Life is delivered to public radio stations by PRX, the Public Radio Exchange.
《美国生活》由公共广播电台 PRX 向公共广播电台播出。
Support for This American Life comes from Lagunitas Brewing Company, committed to keeping the pub in public radio by offering curious ales and lagers for those who appreciate hearing and telling great stories.
对《This American Life》的支持来自拉古尼塔斯啤酒公司 (Lagunitas Brewing Company)，该公司致力于为那些喜欢聆听和讲述精彩故事的人们提供好奇的麦芽啤酒和啤酒，从而让这家酒吧继续出现在公共广播电台中。
Learn more at lagunitas.com.
如需了解更多信息，请访问 launitas.com。
Thanks, as always, to our program's co-founder Mr. Torey Malatia.
一如既往地感谢我们项目的联合创始人 Torey Malatia 先生。
You know, he and I were on a flight together this week and we got delayed on the tarmac for three hours.
你知道，这周他和我一起乘飞机，我们在停机坪上延误了三个小时。
It got to the point where Torey started calling out to the cockpit and heckling the pilot.
事情发展到了托雷开始向驾驶舱喊话并质问飞行员的地步。
How about flying around a little?
飞一圈怎么样？
It would make you feel better.
这会让你感觉更好。
I'm Ira Glass.
我是艾拉·格拉斯。
Back next week with more stories of This American Life.
下周我们将带来更多《美国生活》的故事。
This American Life is produced in collaboration with WBEZ Chicago and delivered to stations by PRX The Public Radio Exchange.
《This American Life》与 WBEZ Chicago 合作制作，并由 PRX 公共广播电台传送到各电台。