My philosophy for a happy life | Sam Berns | TEDxMidAtlantic

Summary

山姆，一位17岁的普罗杰里症患者，分享了他如何在体重只有50磅的情况下，克服携带40磅重的行进乐队小鼓的困难，通过设计轻便的鼓架实现了自己的梦想。他介绍了普罗杰里症的罕见性和影响，分享了母亲团队在治疗上取得的突破，并传达了他的生活哲学：接受不能改变的，专注于能做的事情；与优秀的人相处；不断向前看，追求梦想。山姆鼓励人们无论面对什么障碍，都能过上幸福的生活，并以幽默的方式提醒人们享受生活，不要错过任何派对。

Takeaways

• 🎶 故事的主人公Sam热爱打击乐器，尽管患有早衰症（Progeria），但他通过与家人和工程师合作，成功设计了一个轻量级的鼓架，实现了自己加入高中行进乐队的梦想。
• 🏥 Progeria是一种罕见病，全球大约只有350名儿童受到影响，其症状包括皮肤紧绷、体重增加困难、生长受限和心脏病。
• 👩‍🔬 Sam的母亲和她的科学家团队发表了首个成功的Progeria治疗研究，Sam因此接受了NPR的采访。
• 😄 Sam强调自己生活得很快乐，他不希望人们因为Progeria而同情他，他更专注于克服生活中的障碍。
• 🤔 Sam分享了他的快乐生活哲学，包括接受自己不能做的事情，专注于自己能做的事情，以及找到不同的方法来实现目标。
• 👨‍👩‍👧‍👦 Sam非常幸运，拥有一个一直支持他的家庭和一个亲密的朋友群体，他认为这些人是他生活中的重要组成部分。
• 🎉 Sam认为与他人建立良好的关系，以及在困难时期保持积极向前的态度是快乐生活的关键。
• 🚀 Sam曾经梦想成为一名工程师或发明家，现在他想进入生物学领域，无论是细胞生物学、遗传学还是生物化学，他相信自己可以改变世界。
• 🎥 Sam参与了HBO的纪录片《Life According to Sam》，这记录了他的生活哲学和对Progeria的看法。
• 💪 Sam在生病期间，通过保持积极向前的态度和期待未来，帮助自己克服了困难。
• 🎉 Sam建议人们不要因为任何障碍而错过生活中的乐趣，比如学校的舞会。

Q & A

Sam 患有什么疾病，导致他无法携带常规大小的军鼓？

Sam 患有一种名为早衰症（Progeria）的疾病，这种疾病导致他体重只有大约50磅，因此无法携带每个重约40磅的常规军鼓。

Sam 和他的家人是如何克服军鼓重量问题的？

Sam 和他的家人与一位工程师合作，设计了一个只有大约6磅重的军鼓装置，使他能够更容易地携带。

Progeria 是一种怎样的疾病，全球大约有多少儿童受到影响？

Progeria 是一种极其罕见的疾病，全球大约有350名儿童受到影响。这种疾病会导致皮肤紧绷、体重增长缓慢、生长受限和心脏病。

Sam 的母亲和她的科学团队在 Progeria 治疗方面取得了什么成果？

Sam 的母亲和她的科学团队发表了第一个成功的 Progeria 治疗研究，这使得 Sam 受到了 NPR 的采访。

Sam 在 NPR 采访中被问到的最重要的事情是什么，他是如何回答的？

Sam 被问到最重要的事情是人们应该了解他什么，他的回答是他有一个非常快乐的生活。

Sam 的生活哲学包括哪三个方面？

Sam 的生活哲学包括：接受自己无法做的事情，因为还有很多事情他可以做；与他想成为的人在一起，这些人品质高尚；不断向前看，总是有事情值得期待和努力。

Sam 如何通过调整来实现他的梦想，例如在军乐队中演奏军鼓？

Sam 通过与家人和工程师合作，设计了一个轻量级的军鼓装置，使他能够克服身体限制，在军乐队中演奏军鼓。

Sam 如何看待与他的朋友和乐队成员在一起的时光？

Sam 认为与朋友和乐队成员在一起的时光非常宝贵，他们彼此支持，享受对方的陪伴，并且在音乐中找到了超越 Progeria 的真实和真诚。

Sam 对于未来有什么期待，他如何看待自己的职业抱负？

Sam 期待进入生物学领域，可能是细胞生物学、遗传学、生物化学或相关领域。他相信无论选择成为什么样的人，他都能改变世界，并在这个过程中找到快乐。

Sam 提到了 HBO 拍摄的关于他和他的家庭的纪录片，这部纪录片叫什么名字？

这部纪录片叫做《Life According to Sam》，记录了 Sam 和他的家庭的生活。

Sam 在演讲结束时给出了什么建议，他为什么认为这很重要？

Sam 在演讲结束时建议人们不要错过任何可以参加的派对，他以自己即将参加的学校返校舞会为例，强调享受生活和社交活动的重要性。

Outlines

00:00

🥁 梦想与挑战：Sam与普罗杰里亚症

Sam，一位17岁的少年，患有罕见病普罗杰里亚症，体重仅有50磅。尽管如此，他梦想加入高中的行进乐队，成为小鼓手。由于普罗杰里亚症，他无法携带重达40磅的常规小鼓和背带，因此他被分配到半场表演的坑击乐部分。Sam不满足于此，他和家人与工程师合作，设计了一种仅重6磅的小鼓装置，使他得以实现梦想。Sam还分享了关于普罗杰里亚症的信息，这是一种影响全球约350名儿童的疾病，症状包括皮肤紧绷、体重不增、生长迟缓和心脏病。Sam的母亲和她的科学团队发表了首个成功的普罗杰里亚治疗研究，使Sam受到NPR的采访。尽管面临许多挑战，Sam强调他有一个非常快乐的生活，并分享了他的快乐生活哲学的第一部分：接受自己无法做的事情，因为还有很多事情他能够做到。

05:07

👫 身边的人：家庭、朋友和导师的重要性

Sam强调了身边的人对他生活的重要性。他有一个支持他的家庭和一个亲密的朋友群体，他们在学校里互相帮助，共同享受彼此的陪伴。Sam提到，尽管他在乐队中的地位有所提升，可以指导年轻的乐队成员，但他感到最高峰的时刻是与每天围绕在他身边的人在一起。这些人为他的生活提供了真正的积极影响，他也希望他能对他们产生同样的影响。Sam鼓励大家珍惜家人、朋友和导师，因为他们对日常生活有着真正重要的积极影响。他还引用了沃尔特·迪士尼的名言，强调总是向前看的重要性，并分享了自己如何通过期待未来的事物来丰富自己的生活，无论是期待下一本漫画书的发布，还是期待与朋友和家人共度的时光。

10:08

🚀 持续前进：Sam的生活哲学和未来展望

Sam分享了他生活哲学的第三部分：持续前进。他提到，即使在生病和与世隔绝的时候，知道会好转并期待再次感觉良好，帮助他保持前进的动力。Sam认为勇敢并不容易，但他意识到勇敢是前进的关键。他不浪费精力为自己感到难过，而是选择与他想要在一起的人在一起，并持续前进。Sam还提到，尽管他的观点和潜在的职业选择可能已经改变和成熟，但他对生活的心态和哲学保持不变。他展示了自己年轻时在纪录片《Life According to Sam》中的片段，体现了他的生活哲学。最后，Sam以幽默的方式提醒大家不要错过任何聚会，并以感谢结束了他的演讲。

Keywords

💡Progeria

Progeria是一种罕见的遗传性疾病，导致儿童加速老化。在视频中，演讲者Sam患有此病，体重只有50磅，这使得他无法携带重约40磅的常规军鼓。Progeria是视频的核心主题，因为它是Sam面对的挑战和克服障碍的起点。

💡Foxboro High School Marching Band

Foxboro High School Marching Band是Sam想加入的学校军乐队。视频中提到，Sam梦想在高中乐队中演奏小军鼓，但由于Progeria，他最初被分配到非行进打击乐部分。这个关键词体现了Sam追求梦想的渴望和决心。

💡Pit Percussion

Pit Percussion指的是在乐队中不参与行进表演的打击乐部分。Sam最初被分配到这个部分，因为他无法携带沉重的军鼓。然而，这使他感到沮丧，因为他渴望参与行进表演。这个关键词展示了Sam在追求梦想过程中遇到的障碍。

💡Snare Drum Harness

Snare Drum Harness是军鼓的背负装置。Sam与工程师合作设计了一个轻量级的军鼓背负装置，只有6磅重，使他能够实现在军乐队中演奏的梦想。这个关键词是Sam克服身体限制，实现梦想的关键。

💡Marching Band

Marching Band是行进乐队，成员在演奏时同时进行队形变换和行进。Sam的梦想是成为军乐队的一员，这在视频中是一个重要的主题，代表了他不屈不挠的精神和对音乐的热爱。

💡Treatment Study

Treatment Study指的是治疗方法的研究。Sam的母亲和她的科学家团队发表了关于Progeria的首个成功治疗研究。这个关键词展示了科学进步对罕见疾病患者生活的积极影响。

💡Happiness

Happiness在视频中是Sam生活哲学的核心。尽管面临许多挑战，Sam强调他有一个非常快乐的生活，并且他不希望人们为他感到难过。这个关键词体现了Sam积极的生活态度和对幸福的追求。

💡Philosophy for a Happy Life

Sam分享了他对于幸福生活的哲学，包括接受自己不能做的事情，因为还有很多事情他可以做。这个关键词是视频的中心思想，展示了Sam如何通过积极的心态克服困难，追求幸福。

💡Bravery

Bravery在视频中被提及，当Sam谈到在生病期间如何保持前进的动力。勇敢不是一件容易的事，但Sam认为这是继续前进的关键方式。这个关键词强调了面对困难时的勇气和决心。

💡Mentor

Mentor指的是指导或影响他人的人。Sam提到了他在乐队和科学领域的导师，如NIH的主任Francis Collins。这个关键词展示了导师在个人成长和职业发展中的重要作用。

💡Life According to Sam

这是HBO拍摄的一部关于Sam及其家庭的纪录片的标题。这部纪录片记录了Sam的生活哲学和他对Progeria的态度。这个关键词是视频叙事的一部分，提供了对Sam生活和挑战的深入了解。

Highlights

Sam刚刚满17岁，他有一个加入高中乐队的梦想。

Sam患有早衰症，体重只有50磅，而一个普通的军鼓和背带重约40磅。

由于身体条件限制，Sam最初被分配到乐队的打击乐部分，而不是行进乐队。

Sam与工程师合作设计了一个只有6磅重的军鼓背带，以实现他的梦想。

早衰症是一种罕见病，全球大约有350名儿童受到影响。

Sam的母亲和她的科学家团队发表了首个成功的早衰症治疗研究。

Sam在NPR的采访中强调，他有一个非常快乐的生活。

Sam分享了他的快乐生活哲学，包括接受自己不能做的事情，专注于能做的事情。

Sam通过调整和创新，找到了实现自己梦想的不同方式。

Sam强调了与高质量的人相处的重要性，他有一个支持他的家庭和一群好朋友。

Sam认为，与他人一起创造的音乐超越了早衰症，让他感到快乐。

Sam提倡向前看，总是有值得期待和努力的事情。

Sam分享了他小时候想成为工程师和发明家的梦想，以及他现在的生物学职业抱负。

Sam提到了HBO关于他和他的家庭的纪录片《Life According to Sam》。

Sam展示了他年轻时的一段视频，表达了他的人生观和哲学。

Sam分享了他生病时的经历，以及如何通过保持前进的心态来克服困难。

Sam以他的快乐生活哲学结束演讲，并给观众一条额外的建议：不要错过任何聚会。

Transcripts

Transcriber: Bob Prottas Reviewer: Ariana Bleau Lugo

Hello everyone.

I'm Sam,

and I just turned 17.

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

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

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

But each snare drum and harness

weighed about 40 pounds each,

and I have a disease called Progeria.

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

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

and because of this the band director assigned me to play

pit percussion during the halftime show.

Now pit percussion was fun.

It involved some really cool auxiliary percussion instruments,

like the bongos, timpani,

and timbales, and cowbell.

So it was fun,

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

However, nothing was going to stop me

from playing snare drum with the marching band

in the halftime show.

So my family and I worked with an engineer to design

a snare drum harness

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

So after continuous work, we made

a snare drum apparatus that weighs only about 6 pounds.

(Applause)

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

It affects only about 350 kids today, worldwide.

So it's pretty rare,

and the effects of Progeria include:

tight skin, lack of weight gain, stunted growth,

and heart disease.

Last year my Mom and her team of scientists

published the first successful Progeria Treatment Study,

and because of this I was interviewed on NPR,

and John Hamilton asked me the question:

"What is the most important thing

that people should know about you?"

And my answer was simply that

I have a very happy life.

(Applause)

So even though there are many obstacles in my life,

with a lot of them being created by Progeria,

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

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

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

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

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

So this is a quote from the famous Ferris Bueller.

The first aspect to my philosophy is that

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

because there is so much I can do.

Now people sometimes ask me questions like,

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

"What daily challenges of Progeria do you face?"

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

most of my time is spent thinking about things

that have nothing to do with Progeria at all.

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

When I can’t do something like

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

I know what I’m missing out on.

But instead, I choose to focus on the activities

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

like scouting, or music, or comic books,

or any of my favorite Boston sports teams.

Yeah, so -- (Laughter)

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

by making adjustments,

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

Kind of like you saw with the drum earlier.

So here’s a clip

with me playing Spider-Man

with the Foxboro High School Marching Band

at halftime a couple of years ago.

(Video)

♫ Spider-Man theme song ♫

(Applause)

Thank you.

All right, all right, so --

That was pretty cool,

and so I was able to accomplish my dream

of playing snare drum with the marching band,

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

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

The next aspect to my philosophy is

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

people of high quality.

I’m extremely lucky to have an amazing family,

who have always supported me throughout my entire life.

And I’m also really fortunate to have

a really close group of friends at school.

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

but we really enjoy each other’s company,

and we help each other out when we need to.

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

So this is us goofing off a little bit.

So we’re juniors in High School now,

and we can now mentor younger band members,

as a single collective unit.

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

is that the music that we make together,

is true, is genuine, and it supersedes Progeria.

So I don’t have to worry about that

when I’m feeling so good about making music.

But even having made a documentary,

going on TV a couple of times,

I feel like I’m at my highest point

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

They provide the real positive influences in my life,

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

(Applause)

Thank you.

So the bottom line here,

is that I hope you appreciate and love your family,

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

and acknowledge your mentors,

and your community,

because they are a very real aspect of everyday life,

they can make a truly significant, positive impact.

The third aspect to the philosophy is,

Keep moving forward.

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

and it’s one of my favorite quotes.

I always try to have something to look forward to.

Something to strive for to make my life richer.

It doesn’t have to be big.

It could be anything from

looking forward to the next comic book to come out,

or going on a large family vacation,

or hanging out with my friends,

to going to the next High School football game.

However, all of these things keep me focused,

and know that there’s a bright future ahead,

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

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

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

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

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

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

I kind of accept it,

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

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

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

I wanted to be an inventor,

who would catapult the world into a better future.

Maybe this came from my love of Legos,

and the freedom of expression that I felt

when I was building with them.

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

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

Now today my ambitions have changed a little bit,

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

maybe cell biology, or genetics,

or biochemistry, or really anything.

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

Francis Collins, the director of the NIH,

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

I feel that no matter what I choose to become,

I believe that I can change the world.

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

About four years ago,

HBO began to film a documentary

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

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

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

and hopefully matured, like my potential career choice.

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

Like my mentality, and philosophy towards life.

So I would like to show you

a clip of my younger self from the film,

that I feel embodies that philosophy.

(Video)

I know more about it genetically.

So it’s less of an embodiment now.

It used to be like

this thing that prevents me from doing all this stuff,

that causes other kids to die,

that causes everybody to be stressed,

and now it’s a protein that is abnormal,

that weakens the structure of cells.

So,

and it takes a burden off of me because now

I don’t have to think about

Progeria as an entity.

Okay, pretty good, huh?

(Applause)

Thank you.

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

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

to the test at one time, until last January.

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

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.

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.

And sometimes I had to be brave,

and it wasn’t always easy.

Sometimes I faltered,

I had bad days,

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

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

So, all in all,

I don’t waste energy feeling bad for myself.

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

and I keep moving forward.

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

regardless of your obstacles,

can have a very happy life as well.

Oh, wait, hang on a second,

one more piece of advice –-

(Laughter)

Never miss a party if you can help it.

My school’s homecoming dance is tomorrow night,

and I will be there.

Thank you very much.

(Applause)