震撼人心！17岁美国少年死亡前的TED演讲，这才是真正的人生态度！（附视频&演讲稿）

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山姆是一个在位育马萨诸塞州福克斯波罗的福克斯波罗高中就读的青少年。他曾就读高中的军乐队里担任打击乐器组的领袖，这也是他得到了最高的荣誉。他也曾在美国男子童子军里拿到了鹰级童子军军衔。

萨姆在两岁的时候被确诊患有一种极为罕见的早衰症（快速老化的疾病）。他被一部在HBO于2013年十月二十一日首演的叫作《山姆的生活》的纪录片所关注。

从一出生就患有早衰症的Sam Berns 是不幸的，他从小就知道自己将会面对比正常人多得多的困难和障碍，但这并没有阻止他追求幸福的人生。乐观的他始终对生活抱有着希望，以积极的态度去应对一切困难。

他有三条关于幸福人生的法则，分享给你，希望也能带给你力量。无论境遇如何，让自己过得幸福！

音频&视频

讲者简介

Sam Berns

早衰症患者，这是一种罕见疾病，患有这种疾病的人有着与常人不同的外形和及其孱弱的身体，在这场演讲的一个月后，Sam就死于这种无法医治的疾病，年仅17岁。

17岁美国少年死亡前的TED演讲p

↓↓↓ 上下滑动，查看演讲稿 ↓↓↓

Hello everyone.

大家好

I'm Sam,

我是山姆

and I just turned 17.

才满17岁

A few years ago, before my freshman year in High School,

几年前 高一之前

I wanted to play snare drum in the Foxboro High School Marching Band,

我想要在校军乐队(Foxboro福克斯波罗高中)里打军鼓

and it was a dream that I just had to accomplish.

我十分想要实现这个梦想

But each snare drum and harness

不过问题是每个军鼓套件

weighed about 40 pounds each,

重量大约40磅左右(18公斤)

and I have a disease called Progeria.

我患有一种叫做Progeria(早年衰老症)的病

So just to give you an idea, I weigh only about 50 pounds.

以至于我本身才只有50磅(23公斤)左右

So, logistically, I really couldn't carry a regular sized snare drum,

所以 理论上 我根本没有办法身挂普通尺寸的军鼓

and because of this the band director assigned me to play

因此乐队主管只能派我在

pit percussion during the halftime show.

中场表演时演奏后排打击乐器

Now pit percussion was fun.

当时的后排打击乐器很有趣

It involved some really cool auxiliary percussion instruments,

囊括了许多非常酷的节奏打击乐器

like the bongos, timpani,

像邦哥小对鼓 定音鼓

and timbales, and cowbell.

蒂姆巴尔鼓以及牛铃

So it was fun,

虽然这些是很有趣

but it involved no marching, and I was just so devastated.

但我还是沮丧极了 因为这些跟军乐都全然无关

However, nothing was going to stop me

但是我坚信没有任何事能阻挡我

from playing snare drum with the marching band

在中场表演时

in the halftime show.

在军乐队里打军鼓

So my family and I worked with an engineer to design

所以一位工程师应我与我家人之邀 为我量身设计了

a snare drum harness

一个特制的军鼓背带

that would be lighter, and easier for me to carry.

它很轻以至我能方便的穿上它

So after continuous work, we made

经过不懈努力

a snare drum apparatus that weighs only about 6 pounds.

我们做出了一个仅有6磅(2.7公斤)左右的军鼓套装装置

I just want to give you some more information about Progeria.

我想让大家更深入了解一下早衰症的情况

It affects only about 350 kids today, worldwide.

现在世界上仅只有350例

So it's pretty rare,

是一种极为罕见的疾病

and the effects of Progeria include:

它的症状体现在：

tight skin, lack of weight gain, stunted growth,

紧肤、体重缺增、成长萎缩

and heart disease.

以及心脏病

Last year my Mom and her team of scientists

去年我母亲以及她的科学家团队

published the first successful Progeria Treatment Study,

成功发表了第一个早衰症治疗范本

and because of this I was interviewed on NPR,

因此我应邀接受 NPR(美国国家广播)的采访

and John Hamilton asked me the question:

主持人约翰汉密尔顿问我

"What is the most important thing

“关于你 大家最需要了解什么?”

that people should know about you?"

“关于你 大家最需要了解什么?”

And my answer was simply that

我的回答很简单

I have a very happy life.

我的生活很快乐

(Applause)

(鼓掌)

So even though there are many obstacles in my life,

虽然我在生活中遇到很多阻碍

with a lot of them being created by Progeria,

绝大多数都归咎于早衰症

I don't want people to feel bad for me.

我不想人们因此为我感到难受

I don't think about these obstacles all the time,

我从不在乎这些障碍

and I'm able to overcome most of them anyway.

无论如何我都能尽力克服它们

So I’m here today, to share with you my philosophy for a happy life.

因此我今天才能坐在这和大家 分享我快乐的人生哲学

So, for me, there are 3 aspects to this philosophy.

所以对我而言这种理念有三个方面 这一点引自著名的弗瑞斯布依勒(1986年电影《咪走堂》主角)

So this is a quote from the famous Ferris Bueller.

时光如梭，若不止步环顾四周，你可能将错过一些值得留意的东西——Ferris Bueller (《咪走堂》)

The first aspect to my philosophy is that

第一点我的人生哲学理念是

I’m okay with what I ultimately can’t do

命里无时莫强求

because there is so much I can do.

因为我可以做的仍有很多很多

Now people sometimes ask me questions like,

人们有时会问我

"Isn’t it hard living with Progeria?" or

“伴随着早衰症的生活是不是很艰难?”

"What daily challenges of Progeria do you face?"

又或 "患有早衰症的你每日都会面临什么样的挑战?"

And I’d like to say that, even though I have Progeria,

我想说 即使我有早衰症

most of my time is spent thinking about things

我大部分的时间都花在考虑一些

that have nothing to do with Progeria at all.

跟早衰症无关的事情上

Now this doesn’t mean that I ignore the negative aspects of these obstacles.

但是这并不意味着我完全 忽略了这些障碍的消极因素

When I can’t do something like

当我无法做某事时

run a long distance, or go on an intense roller coaster,

例如长距离跑步或玩激烈的过山车

I know what I’m missing out on.

我当然知道我会错过什么

But instead, I choose to focus on the activities

但取而代之的，我选择侧重那些

that I can do through things that I’m passionate about,

对我来说充满热情的活动

like scouting, or music, or comic books,

例如童子军 音乐或漫画书

or any of my favorite Boston sports teams.

又或任何关于我最爱的波士顿体育队的活动

Yeah, so -- (Laughter)

是的，所以—— (笑声)

However, sometimes I need to find a different way to do something

不过 有时我会通过一定的调整

by making adjustments,

寻找一些不同于常人的方式去做某些事

and I want to put those things in the "can do" category.

最终把这些东西归类于个人"能做"的范畴里

Kind of like you saw with the drum earlier.

正如方才各位所见的 军鼓一事

So here’s a clip

因此 这里有个视频片段

with me playing Spider-Man

关于几年前我和我们

with the Foxboro High School Marching Band

Foxboro高中军乐队在一次中场演奏的

at halftime a couple of years ago.

《蜘蛛侠》的一个片段

♫ Spider-Man theme song ♫

♫ 蜘蛛侠主题曲

Thank you.

谢谢

All right, all right, so --

好吧 好吧 所以——

That was pretty cool,

很酷是吧

and so I was able to accomplish my dream

这样我就已然能够完成

of playing snare drum with the marching band,

想在军乐队里演奏 小军鼓的这一梦想

as I believe I can do for all of my dreams.

因为我相信我可以 做到我所有的梦想

So hopefully, you can accomplish your dreams as well, with this outlook.

所以同样希望你也用这种理念 以实现你自己的梦想

The next aspect to my philosophy is

下一个观点是：

that I surround myself with people I want to be with,

我始终跟那些与我志同道合的人在一起

people of high quality.

那些品质高尚的人们

I’m extremely lucky to have an amazing family,

我非常幸运的拥有 一个不可思议的家庭

who have always supported me throughout my entire life.

他们始终支持着我 并贯穿这我整个的一生

And I’m also really fortunate to have

在学校里我也相当幸运的

a really close group of friends at school.

拥有一群非常铁朋友们

Now we’re kind of goofy, a lot of us are band geeks,

我们同样都傻傻的痴迷于乐队

but we really enjoy each other’s company,

但我们真正欣赏和享受 彼此的照顾和陪伴

and we help each other out when we need to.

我们互帮互助 当需要彼此帮助时

We see each other for who we are on the inside.

彼此心有灵犀

So this is us goofing off a little bit.

我们在一起共同进退

So we’re juniors in High School now,

现在我们高二

and we can now mentor younger band members,

因此我们可以指导年轻的乐队成员

as a single collective unit.

作为一个这个集体的一员

What I love about being in a group like the band,

我热衷于在一个 像乐队一样的集体里

is that the music that we make together,

因为我们在一起制作音乐

is true, is genuine, and it supersedes Progeria.

这种音乐是真的 是真诚的 它完全取代了我的早衰症

So I don’t have to worry about that

当我享受制作音乐时

when I’m feeling so good about making music.

我可以不用去担心我的疾病

But even having made a documentary,

我甚至因为参与制作了一部纪录片

going on TV a couple of times,

而在电视上露过几次面

I feel like I’m at my highest point

我感觉最棒的时候

when I’m with the people that surround me every day.

就是和周围的人在一起的时候

They provide the real positive influences in my life,

他们给我的生活提供了 真正的积极的影响

as I hope I can provide a positive influence in theirs as well.

当然同时我也希望同样能给 他们的生活提供正能量

Thank you.

谢谢

So the bottom line here,

所以重点是

is that I hope you appreciate and love your family,

我希望大家感激和爱您的家人

love your friends, for you guys, love you Bro’s

爱您的朋友们和兄弟们

and acknowledge your mentors,

并答谢您的导师

and your community,

和您的社区

because they are a very real aspect of everyday life,

因为他们是您日常生活中 一个非常真实一面

they can make a truly significant, positive impact.

他们可以在提供正能量方面 作出真正重大的贡献

The third aspect to the philosophy is,

接着说 第三个方面：

Keep moving forward.

“到此为止，我们不会往回看很远。我们要始终向前看，开启新的门，致力新的事”——Walt Disney (迪士尼老板)

Here’s a quote by a man you may know, named Walt Disney,

你可能知道这是引用自沃尔特迪斯尼的

and it’s one of my favorite quotes.

它也是我最喜欢的引用之一

I always try to have something to look forward to.

我总是尽量朝前看

Something to strive for to make my life richer.

寻找目标并努力 使我的生活更丰富多彩

It doesn’t have to be big.

它不需要很大

It could be anything from

它可以是任何事

looking forward to the next comic book to come out,

比如期待下一次漫画书的出版

or going on a large family vacation,

或是去参加大型的家庭度假

or hanging out with my friends,

又或是跟我的朋友们在一起

to going to the next High School football game.

去参加下一个高中足球比赛

However, all of these things keep me focused,

然而 所有这些都促使我

and know that there’s a bright future ahead,

知道光明的未来在等待着我

and may get me through some difficult times that I may be having.

并给我勇气从而度过人生的艰难时刻

Now this mentality includes staying in a forward thinking state of mind.

这种精神包括着保持一种前瞻性的思维状态

I try hard not to waste energy feeling badly for myself,

我尽力让自己不去 浪费能量为自己感到难过

because when I do, I get stuck in a paradox,

因为当我这么做时 我会陷入一个悖论

where there’s no room for any happiness or any other emotion.

并且除了悲伤这不会给我 带来任何幸福或其他情感

Now, it’s not that I ignore when I’m feeling badly,

并不是说我完全忽略这种悲伤的感受

I kind of accept it,

我只是坦然的接受了它

I let it in, so that I can acknowledge it,

我接纳它并承认这个事实

and do what I need to do to move past it.

同时做我需要去做的 并跨越这道屏障

When I was younger, I wanted to be an engineer.

当我少年时 我想成为一名工程师

I wanted to be an inventor,

我想成为一名发明家

who would catapult the world into a better future.

一个可以让未来的世界 变的更美好的发明家

Maybe this came from my love of Legos,

也许这促使我热衷于乐高玩具

and the freedom of expression that I felt

当我搭建它们时

when I was building with them.

我能自由的表达我的感受

And this was also derived from my family and my mentors,

这理想也是源于我的家人和我的导师

who always make me feel whole, and good about myself.

他们完整了我的人生 让我对自己感觉很好

Now today my ambitions have changed a little bit,

但是如今我的雄心有些改变

I’d like to go into the field of Biology,

我想步入生物领域

maybe cell biology, or genetics,

也许关于细胞生物学或遗传学

or biochemistry, or really anything.

或生物化学 或其他方面

This is a friend of mine, who I look up to,

这个我正望着的是我的一个朋友

Francis Collins, the director of the NIH,

弗朗西斯 柯林斯 美国国家卫生研究院主任

and this is us at TEDMED last year, chatting away.

这是我们在去年TEDMED聊天的场景

I feel that no matter what I choose to become,

我觉得无论我选择要成为什么

I believe that I can change the world.

我坚信我可以改变世界

And as I’m striving to change the world, I will be happy.

而且正因我努力地改变世界 我将会感到幸福和开心

About four years ago,

大约在四年前

HBO began to film a documentary

HBO开始拍摄一部叫做 《山姆的生活》的纪录片

about my family and me called “Life According to Sam”.

是关于我的家人和我的

That was a pretty great experience, but it was also four years ago.

那是一个非常棒的经历 但那也只是四年前

And like anyone, my views on many things have changed,

正如任何人一样 我对很多事物的看法已经改变了

and hopefully matured, like my potential career choice.

希望由此变成熟 像我潜在的职业选择一样

However, some things have stayed the same throughout that time.

然而 有些事情是自始至终没有改变的

Like my mentality, and philosophy towards life.

比如我的心态和对人生的哲学

So I would like to show you

所以我想给你们看

a clip of my younger self from the film,

一段我年少时的视频

that I feel embodies that philosophy.

这段视频能更具体阐述我的人生哲学

I know more about it genetically.

我知道它更多是关于基因方面的

So it’s less of an embodiment now.

所以这是它微观的体现

It used to be like

它一般像这样

this thing that prevents me from doing all this stuff,

而正是这个东西剥夺了我 做很多事的能力

that causes other kids to die,

也是这个东西导致其他孩子死去

that causes everybody to be stressed,

是它让每个人都感到压力

and now it’s a protein that is abnormal,

它是一种不正常的蛋白质

that weakens the structure of cells.

这种蛋白质削弱了正常的细胞结构

So,

所以

and it takes a burden off of me because now

它却也减轻了我的负担因为现在

I don’t have to think about

我已经不用去多虑早衰症

Progeria as an entity.

因为我已经是一个它的实例了

Okay, pretty good, huh?

好吧 还不错吧?

Thank you.

谢谢

So, as you can see I’ve been thinking this way for many years.

所以 正如你所视我已经寻觅 这种乐观的思维方式很多年了

But I’d never really had to apply all of these aspects of my philosophy

但是我之前从没真正将此付诸实践

to the test at one time, until last January.

直到去年一月

I was pretty sick, I had a chest cold, and I was in the hospital for a few days,

我真的病了 我得了支气管炎在医院住了几天

and I was secluded from all of the aspects of my life that I felt

我被与我身边的一切隔绝了

made me, me,

那些是我的生活

that kind of gave me my identity.

那些是我的全部

But knowing that I was going to get better,

但是得知我将转好

and looking forward to a time that I would feel good again,

并期待着病愈的时候

helped me to keep moving forward.

这种状态鼓励着我继续前进

And sometimes I had to be brave,

有时我必须勇敢

and it wasn’t always easy.

而这并不总是那么容易

Sometimes I faltered,

有时我踌躇

I had bad days,

我也会有糟糕的时候

but I realized that being brave isn’t supposed to be easy.

不过我明白 变得勇敢本来就不是一件容易的事儿

And for me, I feel it’s the key way to keep moving forward.

而对我来说 我觉得勇敢是继续前进的关键

So, all in all,

所以 总而言之

I don’t waste energy feeling bad for myself.

我不想浪费精力在悲伤中

I surround myself with people that I want to be with,

我和我希望在一起的人们在一起

and I keep moving forward.

这样我才始终继续前进

So with this philosophy, I hope that all of you,

我希望大家利用这种乐观的态度

regardless of your obstacles,

面对你们的阻碍

can have a very happy life as well.

这样你们就能和我一样有一个愉快的人生

Oh, wait, hang on a second,

哦 等等

one more piece of advice –-

另外还有一条建议

Never miss a party if you can help it.

不要错过任何一个你能参与派对

My school’s homecoming dance is tomorrow night,

我学校明晚将组织同学舞会

and I will be there.

我一定会去的

Thank you very much.

非常感谢

早衰症是一种极为罕见的疾病，全世界现仅有350例，而Sam Berns不幸是其中之一。“我应邀参加美国国家广播电台采访，主持人问，关于你的生活，最希望大家了解的是什么？我的回答很简单，是我的生活很快乐。虽然我有早衰症，但我大部分时间其实花在思考一些跟早衰症无关的事情上。

爱国者队老品Robert Kraft 说：“我很爱Sam Berns，认识他我变得更加富有。他是一个非常特別的年轻人，他的那些鼓舞人心的故事和积极乐观的生活态度深深地打动了我。”

不过倍受敬重的全球富豪Robert Kraft并不是Sam Berns唯一的粉丝。事实是他有很多粉丝。一部分原因跟他参演HBO记录片有关，这部记录Berns真实生活的影片原名《Sam的生活》，后正式更名为《儿童早衰症》。Berns还在2013年10月的TEDx会议上坦然谈到自己的病症。

他是一名来自Foxborough高中的学生，他还参加了军乐队，敲著特別设计的小军鼓。他沒有因为体重仅22.7kg或早衰的平均壽命只有13岁等現实而气妥。他甚至还參加了学校的返校舞会。最重要的是，他一直昂首挺胸，抬头做人。Berns 说：“尽管我在生活中遇到了很多困难，但我不想別人为我感到难过。”

儿童早衰症的发病几率是約4百万到8百万婴儿中有1，世界上仅有200余名儿童患此病症。据研究，Lamin A基因的突变，是导致早衰症儿童细胞结构及功能逐渐退化的原因。由于老化迅速，這些儿童的皮下脂肪组织较少，头发脱落，身材瘦小，体重很难增加。他们很容易患上骨质酥松症，骨头变得更加脆弱。

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