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)
大家好 我是山姆 才满17岁 几年前 高一之前 我想要在校军乐队(Foxboro福克斯波罗高中)里打军鼓 我十分想要实现这个梦想 不过问题是每个军鼓套件 重量大约40磅左右(18公斤) 我患有一种叫做Progeria(早年衰老症)的病 以至于我本身才只有50磅(23公斤)左右 所以 理论上 我根本没有办法身挂普通尺寸的军鼓 因此乐队主管只能派我在 中场表演时演奏后排打击乐器 当时的后排打击乐器很有趣 囊括了许多非常酷的节奏打击乐器 像邦哥小对鼓 定音鼓 蒂姆巴尔鼓以及牛铃 虽然这些是很有趣 但我还是沮丧极了 因为这些跟军乐都全然无关 但是我坚信没有任何事能阻挡我 在中场表演时 在军乐队里打军鼓 所以一位工程师应我与我家人之邀 为我量身设计了 一个特制的军鼓背带 它很轻以至我能方便的穿上它 经过不懈努力 我们做出了一个仅有6磅(2.7公斤)左右的军鼓套装装置 (鼓掌) 我想让大家更深入了解一下早衰症的情况 现在世界上仅只有350例 是一种极为罕见的疾病 它的症状体现在: 紧肤、体重缺增、成长萎缩 以及心脏病 去年我母亲以及她的科学家团队 成功发表了第一个早衰症治疗范本 因此我应邀接受 NPR(美国国家广播)的采访 主持人约翰汉密尔顿问我 “关于你 大家最需要了解什么?” “关于你 大家最需要了解什么?” 我的回答很简单 我的生活很快乐 (鼓掌) 虽然我在生活中遇到很多阻碍 绝大多数都归咎于早衰症 我不想人们因此为我感到难受 我从不在乎这些障碍 无论如何我都能尽力克服它们 因此我今天才能坐在这和大家 分享我快乐的人生哲学 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) 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》) 第一点我的人生哲学理念是 命里无时莫强求 因为我可以做的仍有很多很多 人们有时会问我 “伴随着早衰症的生活是不是很艰难?” 又或 "患有早衰症的你每日都会面临什么样的挑战?" 我想说 即使我有早衰症 我大部分的时间都花在考虑一些 跟早衰症无关的事情上 但是这并不意味着我完全 忽略了这些障碍的消极因素 当我无法做某事时 例如长距离跑步或玩激烈的过山车 我当然知道我会错过什么 但取而代之的,我选择侧重那些 对我来说充满热情的活动 例如童子军 音乐或漫画书 又或任何关于我最爱的波士顿体育队的活动 是的,所以—— (笑声) 不过 有时我会通过一定的调整 寻找一些不同于常人的方式去做某些事 最终把这些东西归类于个人"能做"的范畴里 正如方才各位所见的 军鼓一事 因此 这里有个视频片段 关于几年前我和我们 Foxboro高中军乐队在一次中场演奏的 《蜘蛛侠》的一个片段 (视频) ♫ 蜘蛛侠主题曲 (掌声) 谢谢 好吧 好吧 所以—— 很酷是吧 这样我就已然能够完成 想在军乐队里演奏 小军鼓的这一梦想 因为我相信我可以 做到我所有的梦想 所以同样希望你也用这种理念 以实现你自己的梦想 下一个观点是: 我始终跟那些与我志同道合的人在一起 那些品质高尚的人们 我非常幸运的拥有 一个不可思议的家庭 他们始终支持着我 并贯穿这我整个的一生 在学校里我也相当幸运的 拥有一群非常铁朋友们 我们同样都傻傻的痴迷于乐队 但我们真正欣赏和享受 彼此的照顾和陪伴 我们互帮互助 当需要彼此帮助时 彼此心有灵犀 我们在一起共同进退 现在我们高二 因此我们可以指导年轻的乐队成员 作为一个这个集体的一员 我热衷于在一个 像乐队一样的集体里 因为我们在一起制作音乐 这种音乐是真的 是真诚的 它完全取代了我的早衰症 当我享受制作音乐时 我可以不用去担心我的疾病 我甚至因为参与制作了一部纪录片 而在电视上露过几次面 我感觉最棒的时候 就是和周围的人在一起的时候 他们给我的生活提供了 真正的积极的影响 当然同时我也希望同样能给 他们的生活提供正能量 (掌声) 谢谢 所以重点是 我希望大家感激和爱您的家人 爱您的朋友们和兄弟们 并答谢您的导师 和您的社区 因为他们是您日常生活中 一个非常真实一面 他们可以在提供正能量方面 作出真正重大的贡献 接着说 第三个方面: “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) 你可能知道这是引用自沃尔特迪斯尼的 它也是我最喜欢的引用之一 我总是尽量朝前看 寻找目标并努力 使我的生活更丰富多彩 它不需要很大 它可以是任何事 比如期待下一次漫画书的出版 或是去参加大型的家庭度假 又或是跟我的朋友们在一起 去参加下一个高中足球比赛 然而 所有这些都促使我 知道光明的未来在等待着我 并给我勇气从而度过人生的艰难时刻 这种精神包括着保持一种前瞻性的思维状态 我尽力让自己不去 浪费能量为自己感到难过 因为当我这么做时 我会陷入一个悖论 并且除了悲伤这不会给我 带来任何幸福或其他情感 并不是说我完全忽略这种悲伤的感受 我只是坦然的接受了它 我接纳它并承认这个事实 同时做我需要去做的 并跨越这道屏障 当我少年时 我想成为一名工程师 我想成为一名发明家 一个可以让未来的世界 变的更美好的发明家 也许这促使我热衷于乐高玩具 当我搭建它们时 我能自由的表达我的感受 这理想也是源于我的家人和我的导师 他们完整了我的人生 让我对自己感觉很好 但是如今我的雄心有些改变 我想步入生物领域 也许关于细胞生物学或遗传学 或生物化学 或其他方面 这个我正望着的是我的一个朋友 弗朗西斯 柯林斯 美国国家卫生研究院主任 这是我们在去年TEDMED聊天的场景 我觉得无论我选择要成为什么 我坚信我可以改变世界 而且正因我努力地改变世界 我将会感到幸福和开心 大约在四年前 HBO开始拍摄一部叫做 《山姆的生活》的纪录片 是关于我的家人和我的 那是一个非常棒的经历 但那也只是四年前 正如任何人一样 我对很多事物的看法已经改变了 希望由此变成熟 像我潜在的职业选择一样 然而 有些事情是自始至终没有改变的 比如我的心态和对人生的哲学 所以我想给你们看 一段我年少时的视频 这段视频能更具体阐述我的人生哲学 (视频) 我知道它更多是关于基因方面的 所以这是它微观的体现 它一般像这样 而正是这个东西剥夺了我 做很多事的能力 也是这个东西导致其他孩子死去 是它让每个人都感到压力 它是一种不正常的蛋白质 这种蛋白质削弱了正常的细胞结构 所以 它却也减轻了我的负担因为现在 我已经不用去多虑早衰症 因为我已经是一个它的实例了 好吧 还不错吧? (掌声) 谢谢 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 但是我之前从没真正将此付诸实践 直到去年一月 我真的病了 我得了支气管炎在医院住了几天 我被与我身边的一切隔绝了 那些是我的生活 那些是我的全部 但是得知我将转好 并期待着病愈的时候 这种状态鼓励着我继续前进 有时我必须勇敢 而这并不总是那么容易 有时我踌躇 我也会有糟糕的时候 不过我明白 变得勇敢本来就不是一件容易的事儿 而对我来说 我觉得勇敢是继续前进的关键 所以 总而言之 我不想浪费精力在悲伤中 我和我希望在一起的人们在一起 这样我才始终继续前进 我希望大家利用这种乐观的态度 面对你们的阻碍 这样你们就能和我一样有一个愉快的人生 哦 等等 另外还有一条建议 (笑声) 不要错过任何一个你能参与派对 我学校明晚将组织同学舞会 我一定会去的 非常感谢 (掌声)