I’m Sam,and I just turned 17 .

我是Sam,我剛滿17歲

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

在我要升上高一的前幾年,

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

我想要在Foxboro高中的步操樂隊打軍鼓

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

它是個我要完成的夢想

But each snare drum and harness.

但每個軍鼓和帶子

weighed about 40 pounds each, and I have a disease called Progeria.

每個大約重40磅,.而我得了早衰症

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

給你們一個概念,我只有50磅

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

所以邏輯上,我無法承受正常大小的軍鼓,

and because of this, the band director assigned me to play pit percussion during the halftime show.

因為這樣,樂團指揮指定我在在中場休息表演負責敲打樂器

Now pit percussion was fun.

現在敲打樂器滿好玩的

It involved some really cool auxiliary percussion instruments,

它包含一些很酷的輔助打擊器,

like the bongos, timpani,and timbales, and cowbell.

像是小鼓,定音鼓,巴鼓和牛鈴

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

所以很有趣但它沒有包含行軍,我感到身心疲乏

However, nothing was going to stop me

無論如何,沒有什麼可以阻止我

from playing snare drum with the marching band in a halftime show.

和軍樂隊一起在中場休息打軍鼓

So my family and I worked with an engineer to design snare drum harness that would be lighter, and easier for me to carry.

所以我和家人一起改造一個對我來說更輕更簡單的軍鼓帶

So after continuous work, we made a snare drum apparatus that weighs only about 6 pounds.

在持續的工作下,我們完成了大約只有6磅的軍鼓

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

我只是想給你們多一些早衰症的資訊

It affects only about 350 kids today, worldwide.

現今全世界大約有350個小孩罹患此症

So it’s pretty rare.

所以是滿罕見的

and the effects of Progeria include:

早衰症的影響有:

tight skin, lack of weight gain, stunted growth, and heart disease.

皮膚緊繃,體重輕,發育不良,和心臟疾病

Last year my Mom and her team of scientists published the first successful Progeria Treatment Study,

去年我媽和她的科學家團隊發表了第一個成功早衰症的治療學說,

and because of this I was interviewed on NPR,

因為這樣我在NPR接受訪問,

and John Hamilton asked me the question:

John Hamilton問了個問題

“What is the most important thing that people should know about you?”

‘你覺得大家知道關於你什麼事是最重要的?’

And my answer was simply that

我的答案很簡單

I have a very happy life.

就是我有個快樂的人生

So even though there are many obstacles in my life,

即使我生活中有很多困難,

with a lot them being created by Progeria,

是因為早衰症,

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

我不想大家為我感到難過

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

我一點都不喜歡這些困難

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

但我可以克服大部分的難題

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

所以我今天才在這裡分享我的快樂人生哲學

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

對我來說,這個哲學分成三部分

So this is a quote from the famous Ferris Bueller.

這是引述有名的Ferris Bueller

The first aspect of my philosophy is that

我第一部分的哲學是

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

對於我做不到的事我覺得沒關係

because there is so much I can do.

因為我還是可以做到很多事

Now people sometimes ask me questions like,

現在很多人問我像是,

“Isn’t it hard living with Progeria?” or

’患有早衰症是不是活得很辛苦?’或是

“What daily challenges of Progeria do you face?”

‘你每天因為早衰症而需要面對的挑戰是什麼?’

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

‘你每天因為早衰症而需要面對的挑戰是什麼?’

most of my time is spent thinking about things that have nothing to do with Progeria at all.

我想說的昰,雖然我有早衰症,

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

大部分的時間我都在想跟早衰症完全無關的事情

When I can’t do something like run a long distance, or go on an intense roller coaster.

這不代表我忽略這些障礙帶來的負面觀點

I know what I’m missing out on.

當我不能做像是長跑,雲霄飛車

But instead, I choose to focus on the activities that I can do through things that I’m passionate about,

我知道我失去了什麼

like scouting, or music, or comic books, or any of my favorite Boston sports teams.

但相反的,我選擇專注在我可以而且有興趣的活動上,

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

像是童子軍活動,音樂,漫畫書,或任何我愛的波士頓球隊

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

無論如何,有時我必須找不同方法來調整一些事,

Kind of like you saw with the drum earlier.

我想把它們放在’可以做’的類別

So here’s a clip

有點像是你們早點看到的鼓

with me playing Spiderman with the Foxboro High School Marching Band at halftime a couple of years ago.

這裡有個剪接

Thank you.

幾年前在Foxboro高中軍樂隊時我們演奏蜘蛛人

All right, all right, so –

謝謝

That was pretty cool.

好啦 好啦 所以--

and so I was able to accomplish my dream.

是滿酷的

of playing snare drum with the marching band, as I believe I can do for all of my dreams.

所以我可以完成我的夢想

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

和軍樂隊打軍鼓,就像我相信我可以做到我全部的夢想

The next aspect to my philosophy is

藉由這觀點,希望你們可以完成你們的夢想

that I surround myself with people I want to be with, people of high quality.

我的下個哲學是

I’m extremely lucky to have an amazing family,

我讓自己環繞在我喜歡的人身邊,有才能的人

who have always supported me throughout my entire life.

我很幸運有這樣美妙的家庭,

And I’m also really fortunate to have a really close group of friends at school.

總是直持我的家人

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

我也很幸運在學校有一群親密的好朋友們

but we really enjoy each other’s company,

現在我們有點傻,我們很多都是樂團怪咖

and we help each other out when we need to.

但我們很享受彼此的陪伴,

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

當彼此有需要我們也互相幫忙

So this is us goofing off a little bit.

我們看到的昰彼此的內涵

So we’re juniors in High school now,

我們一起打混摸魚

and we can now mentor younger band members, as a single collective unit.

我們現在是高二,

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

我們可以在樂團裡教較資淺的成員當作一個集體單位

is that the music that we make together

我最喜歡像樂團一樣組成一組的原因是

is true, is genuine, and it supersedes Progeria.

可以一起玩音樂

So I don’t have to worry about that when I’m feeling so good about making music.

是那麼真實,真誠,讓我忘卻了早衰症

But even having made a documentary, going on TV a couple of times,

當我在享受音樂我根本忘了這件事

I feel like I’m at a highest point when I’m with the people that surround me every day.

當在做紀錄片或是上了好幾次電視,

They provide the real positive influences in my life,

當我跟每天和我相處的人一起我好像是個關注點

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

他們在我生活中給了很多正面影響,

Thank you.

就像我也希望可以給他們正面能量

So the bottom line here,

謝謝

is that I hope that you appreciate and love your family,

最後,

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

我希望你們感謝以及愛你們的家人,

and acknowledge your mentors, and your community,

愛你們的朋友,為了大夥,愛你們的兄弟

because they are a very real aspect of everyday life,

感謝你們的良師益友和社會

they can make a truly significant, positive impact.

因為它們是你每天生活很重要的一環,

The third aspect to the philosophy is

它們可以給你們很重要很正面的影響

“Keep moving forward”.

第三個哲學是

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

‘持續不懈’

and it’s one of my favorite quotes.

這是引述 Walt Disney的話,

I always try to have something to look forward to.

也是我其中最愛的一句

Something to strive for to make my life richer,

我總是試著期待著什麼

It doesn’t have to be big.

某個我可以盡我最大的努力來豐富我生活的事物

It could be anything from looking forward to the next comic book to come out,

它不需要很偉大

or going on a large family vacation, or hanging out with my friends, to going to the next High School football game.

它可以是任何事務,像是下一期的漫畫,

However, all of these things keep me focused, and know that there’s a bright future ahead,

去家庭度假,和朋友出去玩,參加下次的高中足球隊

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

我專注在這些事而且知道我有美好的未來

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

也可能幫我在未來面對難題時度過

I try hard not to waste energy feeling badly for myself, because when I do, I get stuck in a paradox,

這些精神包含保持正面的心態

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

我試著不要消極因為如果我這樣會困在矛盾中,

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

毫無快樂和情緒的矛盾中

I let it in, so that I can acknowledge it, and do what I need to do to move past it.

不是我忽略壞心情,可以說是我接受它,

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

我讓它來到,如此我才能承認並想辦法解決它

I wanted to be an inventor, who would catapult the world into a better future.

我小的時候想成為工程師

Maybe this came from my love of Legos, and the freedom of expression that I felt when I was building with them.

我想成為讓世界更美好的科學家

And this was also derived from my family and my mentors, who always make me feel whole, and good about myself.

或許是出自我對樂高的喜愛和我可以隨心所欲的建造它們

Now today my ambitions have changed a little bit, I’d like to go into the field of Biology,

這也是從讓我覺得我自己的全部很棒的家人和良師益友們那得來的,

maybe cell biology, or genetics, or biochemistry, or really anything.

現在我的野心是想從事生物領域,

This is a friend of mine, who I look up to. Francis Collins, the director of the NIH.

或許是細胞生物學, 遺傳學, 生物化學或是任何都可以

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

這是我很敬佩的一個朋友, Francis Collins,是國家衛生研究所的主管

I feel that no matter what I choose to become, I believe that I can change the world.

這是我們在TEDMED聊天的樣子,

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

我覺得不管我選擇什麼,我都相信可以改變世界

About four years ago, HBO began to film a documentary about my family and me called “Life according to Sam”.

當我努力的改變世界我會變得快樂

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

大約4年前,HBO開始製作我和家人的紀錄片叫作’ Life according to Sam ’

And like anyone, my views on many things have changed, and hopefully matured, like my potential career choice.

這是個很棒的經驗但那已經是四年前的事了

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

就像每個人,我的觀點改變了但願成熟了點,就像我對人生的抉擇

Like my mentality, and philosophy towards life.

但是有些事情還是沒有改變

So I would like to show you a clip of my younger self from the film, that I feel embodies that philosophy.

像是我的精神和生活哲學

I know more about it genetically.

所以我想秀一段影片我覺得有體現哲學的片段

So it’s less of an embodiment now.

在基因方面,我現在更了解了

It used to be like this thing that prevents me from doing all this stuff.

所以現在沒那麼具體

that causes other kids to die, that causes everybody to be stressed,

以前這件事阻止我做所有的事情

and now it’s a protein that is abnormal, that weakens the structure of cells.

造成其他小孩死掉,讓每個人都有壓力

So,

現在是不正常的蛋白,使細胞架構變弱

and it takes a burden off of me because now I don’t have to think about Progeria as an entity.

所以,

Okay, pretty good, huh?

它不再是我的負擔因為現在我不需要把早衰症當成具體的存在

Thank you

好啦 不錯吧?

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

謝謝

But I’d never really had to apply all of these aspects of my philosophy to the test at one time, until last January.

如同你們看到的,我持續好幾年都是這樣想的

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

但我從來不需要一次把全部我的哲學拿來運用直到去年一月

and I was secluded from all of the aspects of my life that I felt made me, me, that kind of gave me my identity.

我有支氣管炎病得滿嚴重,在醫院待了好幾天

But knowing that I was going to get better, and looking forward to a time that I would feel good again, helped me to keep moving forward.

我的一切生活被隔離在外,給了我一個身分

And sometimes I had to be brave, it wasn’t always easy.

但知道我會好起來,期待痊癒的那天讓我保持信心

Sometimes I faltered, I had bad days, but I realized that being brave isn’t supposed to be easy.

有時候我需要勇敢但並不是那麼容易

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

有時我動搖了,有了壞心情,但我知道要勇敢不會那麼簡單

So, all in all, I don’t waste energy feeling bad for myself.

對我來說這是讓我繼續下去的秘訣

I surround myself with people that I want to be with, and I keep moving forward.

從各方面來說,我不浪費時間在負面感受

So with this philosophy, I hope that all of you, regardless of your obstacles, can have a very happy life as well.

我讓自己圍繞在我喜歡的人中然後繼續向前進 藉由這個哲學,我希望你們,不管你們的難題是什麼都能有個快樂的生活

Oh, wait, hang on a second,

喔,等等

one more piece of advice –

再一個忠告-

Never miss a party if you can help it.

如果可以別錯過任何派對

My school’s homecoming dance is tomorrow night,

我學校的反校節舞會在明晚,

and I will be there.

我會在那

Thank you very much.

真的謝謝大家