【TEDx演讲002】我的幸福生活哲学

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Translator: Bob Prottas Reviewer: Ariana Bleau Lugo

00:18

Hello everyone.

00:20

I'm Sam,

00:21

and I just turned 17.

00:24

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

00:27

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

00:32

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

00:35

But each snare drum and harness

00:37

weighed about 40 pounds each,

00:40

and I have a disease called Progeria.

00:42

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

00:46

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

00:51

and because of this the band director assigned me to play

00:55

pit percussion during the halftime show.

00:59

Now pit percussion was fun.

01:01

It involved some really cool auxiliary percussion instruments,

01:04

like the bongos, timpani,

01:08

and timbales, and cowbell.

01:11

So it was fun,

01:13

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

01:18

However, nothing was going to stop me

01:20

from playing snare drum with the marching band

01:23

in the halftime show.

01:25

So my family and I worked with an engineer to design

01:29

a snare drum harness

01:31

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

01:35

So after continuous work, we made

01:39

a snare drum apparatus that weighs only about 6 pounds.

01:43

(Applause)

01:48

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

01:52

It affects only about 350 kids today, worldwide.

01:58

So it's pretty rare,

02:00

and the effects of Progeria include:

02:03

tight skin, lack of weight gain, stunted growth,

02:07

and heart disease.

02:09

Last year my Mom and her team of scientists

02:12

published the first successful Progeria Treatment Study,

02:16

and because of this I was interviewed on NPR,

02:19

and John Hamilton asked me the question:

02:22

"What is the most important thing

02:24

that people should know about you?"

02:26

And my answer was simply that

02:29

I have a very happy life.

02:31

(Applause)

02:35

So even though there are many obstacles in my life,

02:39

with a lot of them being created by Progeria,

02:42

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

02:45

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

02:47

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

02:51

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

02:56

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

03:00

So this is a quote from the famous Ferris Bueller.

03:04

The first aspect to my philosophy is that

03:08

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

03:11

because there is so much I can do.

03:14

Now people sometimes ask me questions like,

03:16

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

03:19

"What daily challenges of Progeria do you face?"

03:22

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

03:26

most of my time is spent thinking about things

03:28

that have nothing to do with Progeria at all.

03:31

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

03:36

When I can’t do something like

03:38

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

03:42

I know what I’m missing out on.

03:44

But instead, I choose to focus on the activities

03:48

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

03:52

like scouting, or music, or comic books,

03:55

or any of my favorite Boston sports teams.

03:58

Yeah, so -- (Laughter)

04:01

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

04:06

by making adjustments,

04:07

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

04:11

Kind of like you saw with the drum earlier.

04:14

So here’s a clip

04:16

with me playing Spider-Man

04:18

with the Foxboro High School Marching Band

04:21

at halftime a couple of years ago.

04:23

(Video)

04:26

♫ Spider-Man theme song ♫

05:07

(Applause)

05:10

Thank you.

05:12

All right, all right, so --

05:14

That was pretty cool,

05:16

and so I was able to accomplish my dream

05:19

of playing snare drum with the marching band,

05:22

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

05:25

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

05:30

The next aspect to my philosophy is

05:32

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

05:36

people of high quality.

05:38

I’m extremely lucky to have an amazing family,

05:42

who have always supported me throughout my entire life.

05:46

And I’m also really fortunate to have

05:48

a really close group of friends at school.

05:51

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

05:55

but we really enjoy each other’s company,

05:57

and we help each other out when we need to.

06:00

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

06:04

So this is us goofing off a little bit.

06:06

So we’re juniors in High School now,

06:09

and we can now mentor younger band members,

06:15

as a single collective unit.

06:16

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

06:19

is that the music that we make together,

06:22

is true, is genuine, and it supersedes Progeria.

06:28

So I don’t have to worry about that

06:29

when I’m feeling so good about making music.

06:33

But even having made a documentary,

06:36

going on TV a couple of times,

06:38

I feel like I’m at my highest point

06:41

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

06:45

They provide the real positive influences in my life,

06:49

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

06:54

(Applause)

06:58

Thank you.

06:59

So the bottom line here,

07:01

is that I hope you appreciate and love your family,

07:05

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

07:08

and acknowledge your mentors,

07:11

and your community,

07:13

because they are a very real aspect of everyday life,

07:16

they can make a truly significant, positive impact.

07:20

The third aspect to the philosophy is,

07:23

Keep moving forward.

07:25

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

07:29

and it’s one of my favorite quotes.

07:31

I always try to have something to look forward to.

07:34

Something to strive for to make my life richer.

07:37

It doesn’t have to be big.

07:38

It could be anything from

07:41

looking forward to the next comic book to come out,

07:43

or going on a large family vacation,

07:46

or hanging out with my friends,

07:48

to going to the next High School football game.

07:51

However, all of these things keep me focused,

07:55

and know that there’s a bright future ahead,

07:57

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

08:02

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

08:07

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

08:11

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

08:14

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

08:19

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

08:23

I kind of accept it,

08:24

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

08:28

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

08:31

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

08:35

I wanted to be an inventor,

08:36

who would catapult the world into a better future.

08:40

Maybe this came from my love of Legos,

08:42

and the freedom of expression that I felt

08:44

when I was building with them.

08:47

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

08:53

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

08:57

Now today my ambitions have changed a little bit,

09:01

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

09:03

maybe cell biology, or genetics,

09:07

or biochemistry, or really anything.

09:12

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

09:15

Francis Collins, the director of the NIH,

09:19

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

09:22

I feel that no matter what I choose to become,

09:26

I believe that I can change the world.

09:29

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

09:34

About four years ago,

09:36

HBO began to film a documentary

09:39

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

09:42

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

09:46

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

09:49

and hopefully matured, like my potential career choice.

09:54

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

09:58

Like my mentality, and philosophy towards life.

10:02

So I would like to show you

10:04

a clip of my younger self from the film,

10:07

that I feel embodies that philosophy.

10:11

(Video)

10:12

I know more about it genetically.

10:16

So it’s less of an embodiment now.

10:19

It used to be like

10:21

this thing that prevents me from doing all this stuff,

10:24

that causes other kids to die,

10:26

that causes everybody to be stressed,

10:29

and now it’s a protein that is abnormal,

10:35

that weakens the structure of cells.

10:40

So,

10:42

and it takes a burden off of me because now

10:45

I don’t have to think about

10:48

Progeria as an entity.

10:55

Okay, pretty good, huh?

10:57

(Applause)

11:01

Thank you.

11:02

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

11:05

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

11:10

to the test at one time, until last January.

11:14

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

11:19

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

11:23

made me, me,

11:25

that kind of gave me my identity.

11:27

But knowing that I was going to get better,

11:31

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

11:34

helped me to keep moving forward.

11:36

And sometimes I had to be brave,

11:39

and it wasn’t always easy.

11:41

Sometimes I faltered,

11:42

I had bad days,

11:44

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

11:47

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

11:51

So, all in all,

11:54

I don’t waste energy feeling bad for myself.

11:57

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

12:01

and I keep moving forward.

12:03

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

12:06

regardless of your obstacles,

12:08

can have a very happy life as well.

12:11

Oh, wait, hang on a second,

12:13

one more piece of advice –-

12:15

(Laughter)

12:17

Never miss a party if you can help it.

12:19

My school’s homecoming dance is tomorrow night,

12:22

and I will be there.

12:24

Thank you very much.

12:25

(Applause)

00:00

翻译人员: Yikai Yang 校对人员: Dong Mao

00:18

大家好

00:20

我是山姆

00:21

才满17岁

00:24

几年前 高一之前

00:27

我想要在校军乐队（Foxboro福克斯波罗高中）里打军鼓

00:32

我十分想要实现这个梦想

00:35

不过问题是每个军鼓套件

00:37

重量大约40磅左右（18公斤）

00:40

我患有一种叫做Progeria（早年衰老症）的病

00:42

以至于我本身才只有50磅（23公斤）左右

00:46

所以 理论上 我根本没有办法身挂普通尺寸的军鼓

00:51

因此乐队主管只能派我在

00:55

中场表演时演奏后排打击乐器

00:59

当时的后排打击乐器很有趣

01:01

囊括了许多非常酷的节奏打击乐器

01:04

像邦哥小对鼓 定音鼓

01:08

蒂姆巴尔鼓以及牛铃

01:11

虽然这些是很有趣

01:13

但我还是沮丧极了 因为这些跟军乐都全然无关

01:18

但是我坚信没有任何事能阻挡我

01:20

在中场表演时

01:23

在军乐队里打军鼓

01:25

所以一位工程师应我与我家人之邀 为我量身设计了

01:29

一个特制的军鼓背带

01:31

它很轻以至我能方便的穿上它

01:35

经过不懈努力

01:39

我们做出了一个仅有6磅（2.7公斤）左右的军鼓套装装置

01:43

（鼓掌）

01:48

我想让大家更深入了解一下早衰症的情况

01:52

现在世界上仅只有350例

01:58

是一种极为罕见的疾病

02:00

它的症状体现在：

02:03

紧肤、体重缺增、成长萎缩

02:07

以及心脏病

02:09

去年我母亲以及她的科学家团队

02:12

成功发表了第一个早衰症治疗范本

02:16

因此我应邀接受 NPR（美国国家广播）的采访

02:19

主持人约翰汉密尔顿问我

02:22

“关于你 大家最需要了解什么？”

02:24

“关于你 大家最需要了解什么？”

02:26

我的回答很简单

02:29

我的生活很快乐

02:31

（鼓掌）

02:35

虽然我在生活中遇到很多阻碍

02:39

绝大多数都归咎于早衰症

02:42

我不想人们因此为我感到难受

02:45

我从不在乎这些障碍

02:47

无论如何我都能尽力克服它们

02:51

因此我今天才能坐在这和大家 分享我快乐的人生哲学

02:56

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）

03:00

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》）

03:04

第一点我的人生哲学理念是

03:08

命里无时莫强求

03:11

因为我可以做的仍有很多很多

03:14

人们有时会问我

03:16

“伴随着早衰症的生活是不是很艰难？”

03:19

又或 "患有早衰症的你每日都会面临什么样的挑战?"

03:22

我想说 即使我有早衰症

03:26

我大部分的时间都花在考虑一些

03:28

跟早衰症无关的事情上

03:31

但是这并不意味着我完全 忽略了这些障碍的消极因素

03:36

当我无法做某事时

03:38

例如长距离跑步或玩激烈的过山车

03:42

我当然知道我会错过什么

03:44

但取而代之的，我选择侧重那些

03:48

对我来说充满热情的活动

03:52

例如童子军 音乐或漫画书

03:55

又或任何关于我最爱的波士顿体育队的活动

03:58

是的，所以—— （笑声）

04:01

不过 有时我会通过一定的调整

04:06

寻找一些不同于常人的方式去做某些事

04:07

最终把这些东西归类于个人"能做"的范畴里

04:11

正如方才各位所见的 军鼓一事

04:14

因此 这里有个视频片段

04:16

关于几年前我和我们

04:18

Foxboro高中军乐队在一次中场演奏的

04:21

《蜘蛛侠》的一个片段

04:23

（视频）

04:26

♫ 蜘蛛侠主题曲

05:07

（掌声）

05:10

谢谢

05:12

好吧 好吧 所以——

05:14

很酷是吧

05:16

这样我就已然能够完成

05:19

想在军乐队里演奏 小军鼓的这一梦想

05:22

因为我相信我可以 做到我所有的梦想

05:25

所以同样希望你也用这种理念 以实现你自己的梦想

05:30

下一个观点是：

05:32

我始终跟那些与我志同道合的人在一起

05:36

那些品质高尚的人们

05:38

我非常幸运的拥有 一个不可思议的家庭

05:42

他们始终支持着我 并贯穿这我整个的一生

05:46

在学校里我也相当幸运的

05:48

拥有一群非常铁朋友们

05:51

我们同样都傻傻的痴迷于乐队

05:55

但我们真正欣赏和享受 彼此的照顾和陪伴

05:57

我们互帮互助 当需要彼此帮助时

06:00

彼此心有灵犀

06:04

我们在一起共同进退

06:06

现在我们高二

06:09

因此我们可以指导年轻的乐队成员

06:15

作为一个这个集体的一员

06:16

我热衷于在一个 像乐队一样的集体里

06:19

因为我们在一起制作音乐

06:22

这种音乐是真的 是真诚的 它完全取代了我的早衰症

06:28

当我享受制作音乐时

06:29

我可以不用去担心我的疾病

06:33

我甚至因为参与制作了一部纪录片

06:36

而在电视上露过几次面

06:38

我感觉最棒的时候

06:41

就是和周围的人在一起的时候

06:45

他们给我的生活提供了 真正的积极的影响

06:49

当然同时我也希望同样能给 他们的生活提供正能量

06:54

（掌声）

06:58

谢谢

06:59

所以重点是

07:01

我希望大家感激和爱您的家人

07:05

爱您的朋友们和兄弟们

07:08

并答谢您的导师

07:11

和您的社区

07:13

因为他们是您日常生活中 一个非常真实一面

07:16

他们可以在提供正能量方面 作出真正重大的贡献

07:20

接着说 第三个方面：

07:23

“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）

07:25

你可能知道这是引用自沃尔特迪斯尼的

07:29

它也是我最喜欢的引用之一

07:31

我总是尽量朝前看

07:34

寻找目标并努力 使我的生活更丰富多彩

07:37

它不需要很大

07:38

它可以是任何事

07:41

比如期待下一次漫画书的出版

07:43

或是去参加大型的家庭度假

07:46

又或是跟我的朋友们在一起

07:48

去参加下一个高中足球比赛

07:51

然而 所有这些都促使我

07:55

知道光明的未来在等待着我

07:57

并给我勇气从而度过人生的艰难时刻

08:02

这种精神包括着保持一种前瞻性的思维状态

08:07

我尽力让自己不去 浪费能量为自己感到难过

08:11

因为当我这么做时 我会陷入一个悖论

08:14

并且除了悲伤这不会给我 带来任何幸福或其他情感

08:19

并不是说我完全忽略这种悲伤的感受

08:23

我只是坦然的接受了它

08:24

我接纳它并承认这个事实

08:28

同时做我需要去做的 并跨越这道屏障

08:31

当我少年时 我想成为一名工程师

08:35

我想成为一名发明家

08:36

一个可以让未来的世界 变的更美好的发明家

08:40

也许这促使我热衷于乐高玩具

08:42

当我搭建它们时

08:44

我能自由的表达我的感受

08:47

这理想也是源于我的家人和我的导师

08:53

他们完整了我的人生 让我对自己感觉很好

08:57

但是如今我的雄心有些改变

09:01

我想步入生物领域

09:03

也许关于细胞生物学或遗传学

09:07

或生物化学 或其他方面

09:12

这个我正望着的是我的一个朋友

09:15

弗朗西斯 柯林斯 美国国家卫生研究院主任

09:19

这是我们在去年TEDMED聊天的场景

09:22

我觉得无论我选择要成为什么

09:26

我坚信我可以改变世界

09:29

而且正因我努力地改变世界 我将会感到幸福和开心

09:34

大约在四年前

09:36

HBO开始拍摄一部叫做 《山姆的生活》的纪录片

09:39

是关于我的家人和我的

09:42

那是一个非常棒的经历 但那也只是四年前

09:46

正如任何人一样 我对很多事物的看法已经改变了

09:49

希望由此变成熟 像我潜在的职业选择一样

09:54

然而 有些事情是自始至终没有改变的

09:58

比如我的心态和对人生的哲学

10:02

所以我想给你们看

10:04

一段我年少时的视频

10:07

这段视频能更具体阐述我的人生哲学

10:11

（视频）

10:12

我知道它更多是关于基因方面的

10:16

所以这是它微观的体现

10:19

它一般像这样

10:21

而正是这个东西剥夺了我 做很多事的能力

10:24

也是这个东西导致其他孩子死去

10:26

是它让每个人都感到压力

10:29

它是一种不正常的蛋白质

10:35

这种蛋白质削弱了正常的细胞结构

10:40

所以

10:42

它却也减轻了我的负担因为现在

10:45

我已经不用去多虑早衰症

10:48

因为我已经是一个它的实例了

10:55

好吧 还不错吧？

10:57

（掌声）

11:01

谢谢

11:02

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

11:05

但是我之前从没真正将此付诸实践

11:10

直到去年一月

11:14

我真的病了 我得了支气管炎在医院住了几天

11:19

我被与我身边的一切隔绝了

11:23

那些是我的生活

11:25

那些是我的全部

11:27

但是得知我将转好

11:31

并期待着病愈的时候

11:34

这种状态鼓励着我继续前进

11:36

有时我必须勇敢

11:39

而这并不总是那么容易

11:41

有时我踌躇

11:42

我也会有糟糕的时候

11:44

不过我明白 变得勇敢本来就不是一件容易的事儿

11:47

而对我来说 我觉得勇敢是继续前进的关键

11:51

所以 总而言之

11:54

我不想浪费精力在悲伤中

11:57

我和我希望在一起的人们在一起

12:01

这样我才始终继续前进

12:03

我希望大家利用这种乐观的态度

12:06

面对你们的阻碍

12:08

这样你们就能和我一样有一个愉快的人生

12:11

哦 等等

12:13

另外还有一条建议

12:15

（笑声）

12:17

不要错过任何一个你能参与派对

12:19

我学校明晚将组织同学舞会

12:22

我一定会去的

12:24

非常感谢

12:25

（掌声）

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