人生抉择的起点:从被动接受到主动创造
Alexandra Tillmann: 好的,David,Kiah,非常感谢你们的到来。我们开始吧。你们能否分享一下,是什么让你们意识到生活不能仅仅被动地发生,而是需要积极地去选择前进的道路?David,我先从你开始。
Original English
Alexandra Tillmann: Alright, David, Kiah, thank you so much for being here. Let's jump in. Can you both share when you realized that life couldn't just happen to you, that you had to actively start choosing a path forward? David, I'll start with you.
David Fajgenbaum: 好的。 我想可以从我还是医学院学生的时候说起。 在我19岁那年,我妈妈去世了, 我曾答应她,以她的名义成为一名医生。 在我医学院的第三年, 我正朝着这个目标稳步前进, 以我母亲的名义帮助病人, 这时我自己却因为一种叫做卡斯尔曼病的疾病而病危。 我病得 so sick that my last rites were read to me, 我在重症监护室待了六个月。 我的医生告诉我,我们已经束手无策了, 但他们给我用了化疗, 同时使用了七种不同的化疗药物。 令人惊讶的是, 这些化疗起了作用。 它们救了我的命,但它们也让我意识到一个想法: 这七种化疗药物都不是为我的病设计的, 但它们却救了我的命。 所以,一年后我病情复发时, 我的医生告诉我:“我们已经束手无策了, 你将因这种疾病而死亡。” 我说,等等,你们不是给了我这七种 不是为我的病设计的化疗药物,并且它们奏效了吗? 我们怎么知道,是不是还有其他药物 能够帮助我呢? 这让我大开眼界。 我最终发现了一种能够救命的药物, 但这让我意识到, 即使全世界都认为已别无选择,别无希望, 有时,解决方案就近在咫尺, 就像你家附近的药店一样。
Original English
David Fajgenbaum: Sure. I might start back when I was a medical student. I had promised my mom that I would become a doctor in her memory when she passed away, when I was 19 years old, and in my third year of med school, I was really on my way to making that progress, helping patients in my mom's memory when I personally became critically ill with a disease called Castleman disease. I was so sick that I had my last rites read to me, I spent six months in the intensive care unit, and my doctors told me that we were out of options, but they gave me chemotherapy, seven different chemotherapies all at once. And amazingly, those chemotherapies worked. They saved my life, but what they also did is they opened my eyes up to this idea that none of those seven chemotherapies were made for my disease, but they saved my life. So when I relapsed a year later, my doctors told me, "We're out of options, you're going to die from this disease." I said, wait a minute, didn't you give me these seven chemotherapies that weren't made for my disease and they worked? How do we know there's not another drug out there that could help me? And so this sort of opened up my eyes. I eventually discovered another drug that could save my life, but opened my eyes up to this idea that even when the world thinks there are no more options, no more hope, sometimes there's a solution that's literally as close to you as your neighborhood pharmacy.
Kiah Williams: 我觉得对我而言, 那是在我还很小的时候, 我的家庭就分崩离析了。 我们当时濒临贫困的边缘。 我记得有一天晚上,我走出门外, 我是在西费城长大的, 我记得一个晚上,我走到外面, 对自己说,我必须成为那个拯救自己的人, 为自己创造一条新的道路。 所以,我一直,你知道, 专注于学业,努力做到最好。 但我在很小的年纪就做出了这个决定,我说, 我说,我需要离开这里, 我需要做些事情,为自己创造 比现在更好的生活。 而唯一能做到这一点的人是我自己。 当然,这并不完全真实, 我得到了很多帮助,比如, 老师们,甚至我的父母等等。 但我记得自己很小的时候,15岁,我说, “我必须做些不同的事情, 我需要做些 不同且更好的事情。” 然后我做到了,比如,非常努力地学习, 专心学业,获得了斯坦福大学的 全额助学金。 这基本上是我开始认识到, 我可以利用自己的力量 来成就一番事业。 然后我跳到很多年后, 当我actually在诊所工作时, 我本将成为我家庭中 第一个医生, 我看到许多病人 没有好转, 医生离开房间后, 只剩下我一个人, 作为一个健康指导师, 和病人谈论他们想谈的任何事情, 我了解到,有时 人们之所以没有得到 他们所需的药物, 是因为他们负担不起。 所以这就是为什么他们的血压 仍然很高, 胆固醇仍然很高, 糖尿病没有得到控制。 我意识到,我想做一些 能够从根本上解决 那些试图照顾自己健康的病人的问题。 而所有这些外部因素 都在阻碍他们获得健康的能力。
Original English
Kiah Williams: I think for me, it was when I was young, my family just fell apart. And we were teetering at the edge of poverty. And I remember going outside, I grew up in West Philadelphia, I remember going outside one night and literally saying to myself, like, I have to be the one that saves myself, that creates a new path for myself. And so I'd always, you know, focused on school and trying to do well. But I made this decision at a young age to just say, like, I was like, I need to get out of here and I need to do something and have a better life than this for myself. And the only one who's going to do it is me. That obviously wasn't true, I had a ton of help from like, teachers, even my parents, etc. But I remember being very young, 15 years old, and saying, like, "I've got to do something different, I need to do something different and better" and was able to, like, work really hard, buckle down in school, got a full need-based scholarship to Stanford. And essentially that was the beginning of me recognizing, like, I could harness my own power and try to make something of myself. And I think fast forward years from then, when I was actually working in clinics, in medical clinics, and was going to be the first doctor in my family and would see patients who weren't getting better, doctor leaves the room, it's just me in the room as a health coach, talking to patients about whatever they want to talk about, and learning that sometimes people weren't getting the medicine that they needed because they couldn't afford it. So that's why their blood pressure is still high, their cholesterol is still high, their diabetes is not getting better. And I realized that I wanted to do something that could address that at a root level for those patients who were trying to take care of their health. And just all of these external factors were blocking their ability to be well.
将不可控的经历转化为动力
Alexandra Tillmann: 你们刚才都谈到了,我们的生活由所处的环境塑造,对吧? 有些经历比其他经历更具塑造性。 你差点丧命。 而有些情况我们能控制,有些则不能, 但它们都影响着我们前进的方向。 正如我所分享的,这些经历可以是戏剧性的, 也可能很微小。 David,你差点因卡斯尔曼病丧生的经历, 让你同时成为了病人,也成为了研究者。 Kiah,正如你刚才所分享的, 你出生的家庭的经济状况, 真的影响了你对未来的梦想。 这些是你们生活的现实, 但你们设法将它们化为了创作的燃料,变成了能量。 你们能否谈谈, 如何将那些失控的事情, 转化为扩张(机遇)而非收缩(限制)的动力? 因为我发现,对一些人来说,这可能是一种很自然的反应。
Original English
Alexandra Tillmann: You know, as you both talked about, our life is shaped by our circumstances, right? Some more formative than others. You nearly lost your life. And some we can control more than others, but they all contribute to where we head. As I shared, you know, these can be dramatic, or they can be small. David, you know, your near-death experience with Castleman's disease led you to become both patient and researcher really simultaneously. And Kiah, as you just shared, the economic resources of your family that you were born into really affected kind of, what you dreamed for your future. These are the realities of your lives, but you manage to use it for your creative fuel, for your energy. Can you talk a little bit about how you took those things out of your control and used them to expand rather than to contract, which I think can be a very natural experience for some people?
Kiah Williams: 我觉得——我的联合创始人有句很棒的引言, 我非常喜欢,因为它太契合我了: “有时,动力追随行动。” 而不是反过来。 所以,我觉得有时,字面上来说, 就是迈出第一步, 你不需要有百分之百的答案。 你可以有百分之五的答案。 只需朝着那个方向开始移动。 所以,当我们思考这个宏大的问题时, 即使是美国30%的人, 因为药品太贵而无法获得他们所需的药物。 我们不必立即拥有所有答案来解决一切。 我们可以从我们知道是事实的事情开始, 那就是这是一个愚蠢的问题, 并且我们知道存在着 过剩的资源, 足以满足其中一部分需求。 让我们现在就朝着那个方向前进。 而且,我觉得这很大程度上, 就像我个人的经历一样, 想到我的家庭和我成长的环境, 我父亲从小就对我说, 他说,你知道, 我的祖父不识字。 人们会问他,嗯,他怎么生活的? 我记得有人具体问过, 如果你看不到路牌,你怎么开车? 我父亲告诉我, 他父亲对他说: “我看着星星。” 所以我心想,如果我的祖父 能看着星星找路, 并在街道中穿行, 那么我还有什么借口不去尽我所能, 为我们服务的病人, 为规划更美好的生活去做我能做的一切呢? 看着星星。
Original English
Kiah Williams: I think -- there's a really good quote that one of my co-founders used, and I love this because I think it so speaks to me, "sometimes motivation follows motion." Not the other way around. And so I think sometimes literally just by putting one foot in front of the other, you don't have to have 100 percent of the answer. You can have five percent of the answer. Just start moving towards that. And so I think when we think about this big issue, even of 30 percent of people in the US not being able to get medicine they need because it's just too expensive. We don't have to have all the answers to fix everything now. We can just start on the thing that we know to be true, which is this is a dumb problem, and we know that there's surplus that exists to actually meet some of that need. And let's start moving forward with that now. And I think a lot of that also, just like from my personal experience and just thinking about my own family and kind of where I came from, I mean, my dad always told me this growing up, he was like, you know, my grandfather wasn't literate. And people would ask him like, well, how does he function? And I remember someone asked specifically, how do you drive if you can't see street signs? And my dad told me that his father said to him, "I look at the stars." And so I'm like, if my grandfather can look at the stars to find his way and navigate through streets, what excuse do I have to not do everything I possibly can for the patients that we're serving, and to plot a better life? Look at the stars.
Alexandra Tillmann: 太不可思议了。 David,你呢?
Original English
Alexandra Tillmann: It's incredible. And David, how about you?
David Fajgenbaum: 我喜欢那句话。 对我来说,我觉得, 当那个叫做西罗莫司的药物, 也就是最终救了我的那款药物, 当那款药物开始对我起作用时, 我的情况开始好转, 感觉也越来越好。 我脑子里一直萦绕着一个问题: 如果这个药物对我有效, 我们当地的药店里还有多少 其他救命的药物, 能够治疗更多病人 和更多疾病呢? 我觉得,正如 Kiah 所说的, 一旦你看到了这样的事情, 一旦你经历了这样的事情, 无论是了解到获得药物的途径, 还是我们正在做的工作, 了解到存在所有这些未被发掘的治愈方法, 你就无法视而不见。 特别是当你看到它对人类的影响时, 那些因为这些药物而活着的病人。 所以,我觉得,要回答这个问题, 当你看到这样的事情时, 就是要继续前进,然后说,好吧, 也许它帮助了我, 但它能否帮助我隔壁的那个人? 能否帮助我社区里的其他人? 当你开始看到它可以时, 你就可以不断提出 越来越大的问题。 它能否帮助全世界的人? 我觉得这 对于指引我们前进至关重要。
Original English
David Fajgenbaum: I love that. For me, I think that the moment that that drug sirolimus, which is the drug that ended up saving my life, the moment that drug started working for me, I started seeing my results improving, started feeling better. I just haven't been able to get this question in my mind. If this drug is working for me, how many more life-saving drugs are sitting at our local pharmacy that could treat more patients and more diseases today? And I think exactly as Kiah is saying, you know, once you see something like this, once you experience something like this, whether it's learning about access to medicines or the work we're doing, learning about the fact that there's all these hidden cures that are unmatched, you can't unsee it. Especially when you see the impact that it has on humans, patients that are alive because of these medicines. And so I think, to answer the question, once you see something like that, it's about continuing to push forward and say, OK, maybe this helped me, but can this help the person down the street from me? Can this help someone else in my community? And then when you start seeing that it can, you can just keep asking bigger and bigger questions. Can it help people all over the world? And I think that's so important in guiding us.
应对不公,赋权他人
Alexandra Tillmann: Kiah,你刚才触及了某一点。 你谈到了美国医疗保健系统的脆弱性, 这促使你创立了Sirum。 在你的工作中,你经常面对那些 不易改变或不公平的系统。 正如你所分享的,你目睹了 家庭在负担药品费用和准备晚餐的食物之间 做出不可能的选择。 这些是我们每天在新闻中 都能听到的问题。 你如何劝导那些看到 系统正在损害更大的福祉, 或者可能充斥着不公, 却又疑惑自己是否真的有力量去改变的人?
Original English
Alexandra Tillmann: Kiah, you just were touching on something. You were talking about the fragility of healthcare across the country, which really led you to start Sirum. In your work, you often confront systems that are not easy to change or that aren't fair. And you've witnessed, as you shared, families that are making impossible choices between being able to afford medicine, being able to get food on the table for dinner. These are issues we're all hearing about every day on our news, too. How do you counsel others who see systems working against the greater good or perhaps are plagued by injustice, but wonder, do they really have the power to make any change?
Kiah Williams: 我觉得这是一个非常及时的问题。
你在自己的社区里做什么?
你在这个州做什么,
你在国家层面做什么,
无论你关注哪个层面?
Sirum 让我真正体会到了
走出去,把事情做成的力量。
我们开始时是一个非常草根的、
像,这开始于一个学生项目,
现在已经发展成为最大的
未使用的药品再分配机构。
但有时,真的就是拿起电话,
打给当地的立法者。
例如,我们确实成功地在
佐治亚州推出了一个
送药上门服务,
而这一切的发生,
真的就是我们收到了一封来自
佐治亚州一位退休人士的电子邮件,
我们收到了一封这样的邮件,
它看起来像是全是紫色的字体。
所以我们就想,这有多靠谱?
大家都知道那种你收到的邮件,
像是发到我们 hello@sirum 邮箱里的。
我们就想,这可能靠谱,也可能不靠谱。
一位关注此事的公民说:“嘿,
我怎样才能让这件事在我所在的州实现呢?”
他给我们发了邮件,
联系了他的当地立法者,
让我们与佐治亚州立法机构公共卫生委员会主席
进行了会面。
那就是开始,那就是火花。
所以,我认为我们可以追溯到
我们正在这个国家工作的每一个领域。
通常就是一个人,他关心此事。
可能是一位药剂师,他看到了未使用的药品。
可能只是一个随机的人读到
关于我们的文章,说:
“我想做点什么,我能做什么?”
我们说,如果你能让我们
和州政府见一面,那就太棒了。
从他们给立法者打电话的那一刻起,
说:“嘿,我想看到这个项目发生,
我们就取得了进展。
所以我认为,这会让人感觉很——
很多时候,只是不清楚前进的道路是什么。
再次强调,你不必知道每一步,
但要做点什么,而不是什么都不做,
选择行动而非冷漠,
我觉得这终究会得到回报。
我看到过很多次,
一封邮件或一个电话的价值,
它能从根本上改变
我们组织的命运,
也能改变我们服务
成千上万名患者的能力。
Original English
Kiah Williams: I think that's a very timely question. What do you do in your own community? What do you do in this state, what do you do in the country, whatever level you're looking at? And I think Sirum has really shown me the power of getting out there and just getting stuff done. We started as a very ragtag, like, this started as a student project, and has grown now to the largest redistributor of unused medicine. But sometimes it's literally just picking up the phone and calling a local legislator. So, for example, we actually were able to launch a home-delivery pharmacy in the state of Georgia, but the way that that happened was literally we got an email from a retired person in Georgia, and we got one of these emails that was like, it was like all purple font. So we were like, how legitimate is this? Everyone knows those emails that you get in inbound to your like, hello@sirum. And we were like, this may or may not be legitimate. Concerned citizen that says, "Hey, how do I make this happen in my state?" Emailed us in, called his local legislator, got us a meeting with the chair of public health in the Georgia legislature. That was the beginning that was the spark. So I think we can actually trace back in every area that we're working in this country. It was usually just one person who was concerned. It was a concerned pharmacist who saw unused medicine. It was just a random person who read an article about us and said, "I want to do something, what can I do?" And we said, if you can get us a meeting with the state, that would be awesome. And like, from that moment of just them calling their legislator to say, "Hey, I want to see this program happen, we were able to make inroads. So I think that it can feel very -- A lot of it is just unclear what is the path forward. Again, you don't have to know every step, but doing something rather than nothing, choosing action over apathy, I think it just bears out. And I've just seen this multiple times, the value of an email or a phone call, and what it can be to changing, fundamentally, the destiny of our organization, but also our ability to serve tens of thousands of more patients.
Alexandra Tillmann: 令人难以置信。 David,我转向你。 很多人觉得他们需要得到许可, 或者,像一个戏剧性的警钟, 才能去追求他们大胆的梦想, 或者真正地去影响变革。 但你会对一个感到, “这不会就是全部了”的人说什么呢? 你知道,但他/她又不确定 该如何,或者是否应该行动?
Original English
Alexandra Tillmann: Incredible. David, I'll turn to you. Many people feel like they need permission or like, a dramatic wake-up call to chase their audacious dreams or really affect change. But what would you say to someone who senses this can't be all there is, you know, but isn't sure quite whether or how to show up?
David Fajgenbaum: 是的,一个好问题。 我觉得,无论你生活中 正在经历什么, 或者你面临什么挑战, 我觉得都值得问问自己: “我每天期待的是什么?” “我渴望的是什么?” “我祈祷的是什么?” 去真正地反思那些 你每天都在祈祷、渴望、 并希望的事情。 这往往能告诉你, 你到底应该做什么, 因为你所希望和渴望的, 恰恰是你应该去做的反面。 你知道,你能做什么, 今天,明天,以及后天, 来创造你所希望的, 来解决那个你希望被解决的问题。 我们每天都会面临很多挑战, 感觉它们是无法克服的, 而其中很多确实 让我们难以真正地产生影响。 但我们生活中也有很多问题, 我们希望找到解决方案, 而我们确实 能够做些什么 来帮助解决那个问题。 正如 Kiah 所提到的,这可能是 我们可以给州议员打电话, 或者也许我们可以发些东西 到社交媒体上 来提高人们对某个问题的认识。 但我们可以做很多切实的事情。 但我觉得这一切都始于 反思你所希望的是什么? 你所渴望的是什么? 我觉得这是个很好的起点, 关于你每天应该做什么。
Original English
David Fajgenbaum: Yeah, great question. I think that no matter what you're going through in your life or the challenges you're facing, I think it's worthwhile asking yourself, what am I hoping for every day? What am I wishing for? What am I praying for? Like actually reflect on the things that you're praying for, wishing for, and hoping for every day. And that can oftentimes tell you exactly what you should be doing, because whatever you're hoping for and you're wishing for, that is actually the inverse of what you should be doing. You know, what can you do today, tomorrow, and the next day to create the thing that you're hoping for, to solve the problem that you wish would be solved. And there are a lot of challenges that we face every day that feel insurmountable, and many that truly we have a hard time actually having an impact on. But there are also many problems in our lives that we're hoping for a solution for, that we actually have something that we can do to help to solve that problem. And as Kiah mentioned, it may be that we can call a state legislator, or maybe it's that we can post something on social media to raise awareness about a problem. But there are tangible things we can do. But I think it all starts at reflecting on what are you hoping for? What are you wishing for? And I think that's a great place to start with, what you should be doing every day.
Alexandra Tillmann: 是的,你在你的 TED 演讲中称之为“可行动的希望”,对吧? 仅仅希望事情变得更好是不够的,就像, “嗯,六个月或一年后吧,对吧?” 也许可以稍微谈谈这个。
Original English
Alexandra Tillmann: Yeah, you call that, in your TED talk, actionable hope, right? That it's not enough to just hope for something more, to say, well, in six months or in a year, right? Maybe talk a little bit about that.
David Fajgenbaum: 对。 我意识到存在一个循环, 一切都始于希望, 你知道,你在希望什么? 而这种希望需要驱动行动。 如果希望驱动了行动, 我发现它通常会驱动影响。 而影响又能做什么呢? 它会给你带来更多值得希望的事情,更多的希望。 你创造了一个不可思议的循环。 希望、行动、影响, 带来更多希望、行动、影响。 渐渐地,多年以后, 你在这里与这两位杰出的人在一起, 你们所有人一起, 能够分享一个名为 Every Cure 的组织, 它正在拯救全世界病人的生命。 但这一切都始于最初的希望, 并转化为行动和影响。
Original English
David Fajgenbaum: That's right. I've realized there's this circuit and it all starts with hope, you know, what are you hoping for? And that hope really needs to drive action. And if that hope drives action, what I found is it often will drive impact. And what does impact do? It gives you more things to be hopeful for, more hope. You create this incredible circuit. Hope, action, impact, leads to more hope, action, impact. And all of a sudden, years later, you're sitting here with these two amazing people and all of you and able to share about an organization, Every Cure, that's saving lives of patients all over the world. But it all starts with that first hope and turns to action and impact.
支持创新,共创未来
Alexandra Tillmann: 我知道今天我们会谈论很多,但是, 对于 Every Cure 和 Sirum, 人们如何能参与其中, 或者支持你们正在做的工作呢?
Original English
Alexandra Tillmann: I know we're going to talk about a lot today, but, you know, for Every Cure and Sirum, like, how can people be part of it or support the work that you're doing?
David Fajgenbaum: 当然,我很乐意先说。 是的,绝对。 我们这个房间里有很多人, 他们接受了用于治疗非批准疾病的药物。 这被称为“标签外用药”。 事实上,在美国,每天有20%到30%的处方 都是标签外使用的。 所以医生们会尝试用药物治疗他们未曾预想过的疾病。 不幸的是,这种情况非常随机, 而且在我们的体系中, 寻找一个旧药的新用途并没有足够的利润。 80%的药物都是仿制药, 所以不幸的是,这个体系 并不是为这种(寻找新用途)而设计的。 但之所以分享这些背景, 是因为这意味着你们大多数人 都接受过一种药物, 是用于一种并非为此设计的疾病, 也许它对你们中的一些人有帮助。 你们可以访问 everycure.org/ideas, 告诉我们一种药物, 也许它对你有帮助, 我们可以进一步研究。 我们可以查看我们的AI平台, 看看它在我们所有的其他药物再利用想法中排名如何。 其次,你们可以通过经济支持来帮助我们。 我们运行大型临床试验,这些试验非常昂贵, 我们希望触及世界各地的患者。 最后,提高意识非常重要。 我们找到了治疗我们从未想象过的疾病的方法, 比如用利多卡因治疗乳腺癌, 或用 DFMO 治疗巴赫曼-巴普综合征。 令人惊叹的是,许多这些药物面临的问题仅仅是意识不足, 就是如何将药物送到患者手中。 这只是让患者和医生知道。 所以,帮助传播关于 Every Cure 工作的信息。
Original English
David Fajgenbaum: Sure, I'm happy to start. Yeah, absolutely. So many of us in this room have received medicines for diseases that they're not approved for to treat us. It's called off-label use. In fact, 20 to 30 percent of all prescriptions in the US every day are off-label. So doctors are trying drugs for diseases they're not intended for. Unfortunately, it happens very randomly and there are a lot more opportunities for those drugs to be used systematically. But it's just not profitable in our system to find a new use for an old drug. Eighty percent of drugs are generic, so unfortunately, the system isn't built for this, to find new uses for medicines. But the reason I share that as background is that that means that most of you all have received a drug for a disease it wasn't intended for, and maybe it helped some of you. You can go to everycure.org/ideas and you can tell us about a drug that you've received that maybe has helped you, that we can look into. We can look into our AI platform to see how is it ranking versus all of our other repurposing ideas. Second is that you can help to support us financially. We run large clinical trials that are very expensive, and we want to reach patients all over the world. And finally, awareness raising is really important. We find treatments for diseases that we never would have imagined, like lidocaine for breast cancer or DFMO for Bachmann-bupp syndrome. And amazingly, the problem for a lot of these medications is just awareness, just getting that drug to the patient. It's a matter of letting patients and doctors know. So helping to spread the word about our work at Every Cure.
Kiah Williams: 对我们来说,有机会,如果你有—— 在某些情况下, 个人可以捐赠他们未使用的药品, 只要它们是密封的容器,未过期。 所以,你有可能进行捐赠。 另外我想说的一点是,这是 TED。 你们都是资源丰富、人脉广泛的人。 如果你希望我们能去你的州,为你的州带来全面的 药物获取解决方案,请联系我们。
Original English
Kiah Williams: For us, there is an opportunity, if you have -- in some instances, individuals can actually donate their unused medicine as long as they're in sealed containers, unexpired. So there's an opportunity for you to potentially donate. The other thing I would just say is, this is TED. Like, y'all are well-resourced, well-connected individuals. If you want to see us come to your state to bring a full solution for medication access to your state, reach out.
挑战与收获:体验痛苦,收获成长
Alexandra Tillmann: 你知道,回到 David 所说的“可行动的希望”, 我认为这是一个非常重要的主线。 Kiah,我们昨天谈过, 我以前听你说过, “做难事是一种荣幸”。 Kiah 还有一个新生儿, 所以她现在正处于做难事的阶段。 而你还说过, 真正地考虑“短期痛苦,长期收益”。 那么,Kiah,你能稍微谈谈, 你如何权衡那种痛苦和收益的感觉吗?
Original English
Alexandra Tillmann: You know, going back to what David was talking about, actionable hope, I think that's such an important thread. And Kiah, we were talking yesterday, and I've heard you say before that it's a privilege to do hard things. Kiah also has a new baby, so she's in the thick of doing hard things right now. And something that you also have said is that, really thinking about short-term pain for long-term gain. So maybe talk a little bit, Kiah, about how you kind of, rationalize those feelings of the pain and the gain.
Kiah Williams: 所以,关于希望, “希望”对我来说是个有点棘手的概念, 因为我是... 我是一个可能很现实、 很务实的悲观主义者。 我认识我的人, 可能都不会说“Kiah 是个充满希望、 乐观的人。” 考虑到我从事着社会创业工作, 并试图在这个世界产生影响, 说出这句话确实有点奇怪。 那么,我为什么要这么做呢? 我又是如何每天起床, 并继续这样做的呢? 我觉得很多时候,这归结于, 你知道,当你亲身经历过, 当你生活在边缘, 并且你说,我必须一步一步来。 我必须确保我拥有我所需要的东西。 我必须确保有屋顶遮蔽, 我必须确保有电力供应, 因为电力可能随时会被切断。 你可能不会去想 你未来想要拥有的希望和梦想。 你想到的是活在当下, 努力撑到明天。 但我认为,我意识到, 这本身就是一种希望的形式, 因为你不会就那样躺下等死。 坦白地说,就像。 这是我对自己的忠告, 因为我不是一个乐观的人。 我不是一个很有希望的人。 “嗯,Kiah,你有选择, 希望你选择 让这个世界变得更美好, 并坚持下去。” 我认为你提到的,关于, 我如何让这一切在我的脑海中运作, 归根结底是, 现在我不再处于 担心基本需求的那种境地了, 能够选择生命中那些艰难的事情, 这本身就是一种莫大的荣幸。 世界上有那么多人, 他们没有这样的选择。 那件事就摆在他们面前, 每天都盯着他们。 所以,我桌上有食物, 有良好的健康保险, 有屋顶遮蔽, 我现在可以选择, 我要承担哪些艰难的事情。 所以,我反思这一点, 尤其现在站在这里, 在一个这样的舞台上, 能够选择艰难的事情, 并去应对它们, 这对我来说是多么大的荣幸。 我想在座的各位, 我们大多数人,很可能都有能力 选择那些要在生活中去应对的艰难之事。 所以,你可以选择职业, 你可以选择开始一份新工作, 你可以选择创办一家新机构。 这些都是我们拥有的选择, 这是选择的特权。 所以,我想对我来说, 这就是带给我更多希望的。 它点燃了我心中的火焰, 关于我每天醒来 都可以选择走入这个世界, 去挑战这些压迫性的体系。 不平等的体系。 所以,这是多么美好的人生啊, 每天醒来, 都能在马斯洛需求层次理论的顶端, 致力于自我实现。
Original English
Kiah Williams: So like, hope is a tough concept for me because I am ... I am a probably realistic, pragmatic pessimist. Like, I don't think anyone who's ever worked with me would say "Kiah is a hopeful, optimistic human." Which is kind of a weird thing to say, considering I'm doing social entrepreneurial work and trying to have impact in this world. So like, why am I doing this? And how do I get up every day and continue to do it? And I think a lot of it comes down to like, you know, when you are having personally experienced, when you are living at the edge and you're like, I've just got to put one foot in front of the other. I've got to make sure I have what I need. I have to make sure there's a roof over my head. I have to make sure there's electricity because the electricity got cut off. Like, you're not necessarily thinking about the hopes and dreams of the future that you want to have. You are thinking about living today and making to tomorrow. But I think that in and of itself, I've realized, is a form of hope, because you do not just lay down and die. Candidly, like. And this is something I say to myself because I am not an optimistic person. I'm not a very hopeful person. "Well, Kiah, you have options and hopefully you choose to make this world a better place and to keep going." And I think what you referenced around, like, how do I make this all work in my head, is, at the end of the day, now that I am not in that situation where I am worried about basic needs, like, it's such a privilege to be able to choose the hard things in your life. For so many people in this world that is not a choice that they have. That thing is sitting right in front of them, staring at them every single day. So the fact that I have food on the table, good health insurance, a roof over my head, I get to now choose what are the things that I'm going to take on that are hard. And so like, I reflect on that, especially now being on a stage like this in a room like this, what a privilege it is for me to choose hard things and to go out and tackle those. And all of us in this room, I think mostly, probably, have the ability to choose the hard things that you're going to tackle in your life. So you can choose career, you can choose to start a new job, you can choose to start a new organization. Like, these are all choices that we have, and it's a privilege of choice. And so I think for me, that is what gives me more hope. And that lights a fire under me of this idea of every day I get to wake up and choose to go out into this world and tackle some of these systems of oppression. Systems of inequality. And so like, what a beautiful life that is, to be able to wake up every day and be at Maslow's hierarchy of need at the top, working on self-actualization.
Alexandra Tillmann: David,对于那些正处于你所说的 那种人生十字路口的人,重大的改变, 也许你想创办一家公司或换一份工作, 但对于我们这些可能处于那个位置 但感到有些停滞不前的人, 你有哪些小小的日常选择或心态, 可以分享给大家,帮助他们前进, 或者构建一条更有意义的道路?
Original English
Alexandra Tillmann: David, for people who are navigating some of that crossroads that you're talking about, a big change, maybe it's you want to start an organization or change jobs, but for those of us who might be in that place but feeling a little bit stuck, what small everyday choices or mindsets do you share with people to kind of help them move forward or build like, a more meaningful path?
David Fajgenbaum: 我认为有三件事 能在艰难时期真正帮助你。 这是我从那六个月 在重症监护室里学到的, 当时我正因我的病——卡斯尔曼病——而濒临死亡。 第一,你必须有一个 为之奋斗的愿景。 所以你必须能够真正地看到, 你想要什么, 你希望并渴望的是什么。 对我来说,我当时希望并渴望 能和当时的女友 Caitlin 组建一个家庭。 我希望并渴望 我能以我母亲的名义找到药物, 并以她的名义治疗病人。 这个愿景对我来说至关重要, 因为我在那六个月里一直在努力求生。 第二,你身边必须有一个 了不起的团队。 我的姐妹们在那六个月里, 每天握着我的双手八个小时, 给我我所需要的力量。 我父亲陪着我,我的女友也陪在我身边。 他们给了我力量和支持。 当然,从职业角度来看, 你身边拥有的团队 就是一切,对吧? 这非常重要,它确实是一切。 第三,你必须循序渐进。 如果有人在六个月的初期 就告诉我:“你将遭受 你从未感受过的最痛苦的折磨, 你将濒临死亡六个月。 你将向家人告别。” 我一定会说,我绝对没有力量 坚持六个月。 我会说:“白旗在哪儿?” 我绝不可能做到。 但采取 一次一步,一次呼吸的方法 给了我很大的帮助。 我记得有一次,大概在生病11周的时候, 我的医生告诉我 我们已经束手无策了, 我开始放慢呼吸。 呼吸如此痛苦, 我开始放弃了。 我记得我抬头看着我的姐姐, 当时其他人已经告别过了, 你知道,和我爱的人们都告别过了。 然后我的姐姐看着我说:“深呼吸,Dave。” 我记得听到这句话,我说:“你知道吗? 我还能再呼吸一两次,我们继续。” 我又多呼吸了几次。 我能坚持一分钟, 我能坚持一个小时。 而这几个小时到几天, 就是我们等待化疗生效 拯救我生命的必要时间。 所以,我觉得面对所有这些挑战, 如果你能拥有对未来的愿景, 身边有支持, 然后真正地一次一步,一次呼吸地前进, 我认为我们就能克服很多困难。
Original English
David Fajgenbaum: I think there's three things that can really help you during a really tough time. And I learned this from the six months that I spent in the intensive care unit when I was dying from my disease, Castleman's. And the first is that you have to have a vision for what you're fighting for. So you have to be able to actually see what is it that you want and that you're wishing and hoping for. So for me, I was wishing and hoping for a family with my girlfriend at the time, Caitlin. I was wishing and hoping that I would be able to find drugs in memory of my mom and treat patients in her memory. That vision was so important for me as I was struggling to survive for those six months. The second is that you have to have an amazing team of people by your side. My sisters literally held both of my hands eight hours a day for those six months, giving me the strength that I needed. My dad sat with me, my girlfriend was there with me as well. They provided strength and support. And of course, when you think about it from a professional perspective, the team that you have around you is everything, right? It's so important, it is truly everything. And the third is that you have to take things one step at a time. If someone had come to me at the beginning of the six-month period and said, "You're going to suffer the most unbearable pain you've ever felt, you're going to be on the brink of death for six months. You're going to say goodbye to your family." I would have said, there's no way I have the strength to make it for six months. I would have said, "Where's the white flag?" No way I can do that. But taking the approach of one step and one breath at a time helped me so much. I remember there was one point, about 11 weeks into that illness, where my doctors told me that we were out of options, and I started slowing my breathing. It was so painful to breathe and I was starting to let go. And I remember looking up at my sister and everyone else had said goodbye, you know, said goodbye to all the people that I love. And my sister looked at me and said, "Just breathe, Dave." And I remember hearing that and I was like, "You know what? I can do maybe one or two more breaths, let's go." And I did a couple more. I can do a minute of this, I can do an hour of this. And those couple of hours to couple of days were the difference for the time we needed for the chemotherapy to kick in to save my life. And so I think with all these challenges that we face, if you can have the vision for the future, the support by your side, and then really take things one step or one breath at a time, I think we can overcome so much.
Alexandra Tillmann: 韧性是一个在过去几天里被反复提及的话题, 我认为,人们的普遍看法是, 社会企业家或像你们这样的领导者 总是充满希望, 总是准备好前进并征服更多。 这感觉是这样的吗? 你们总是那样感觉吗?
Original English
Alexandra Tillmann: Resilience is a topic that's been touched on a lot over these last couple of days, and I think that the perception often is that social entrepreneurs or leaders like you are always full of hope, like, always ready to go forward and conquer more. Like, is that how it feels to you? Do you always feel that way?
Kiah Williams: 我觉得我已经说过不是了。 我是一个非常悲观的人。 在很多方面,我每天都是如此。 但我确实,有趣的是, 我不确定我是否一直有希望。 我知道我有信念。 而且我知道我有信念, 奇怪的是,在这个国家。 我对人类有信念。 我认为回到你想看到的愿景, 以及你想生活的世界, 对我来说,想象这个世界 和作为一个最终会拯救自己的种族的人类, 会让我感觉更好, 然后去想这个国家或人类 作为一个会崩溃和毁灭自己的种族。 这很有帮助。 所以... 我想, 是的,我们很多人都累了, 就像,人们都累了。 但与此同时,就像,就是这样了。 就像,你之前提到了 “短期痛苦,长期收益”这个概念。 我想在座的很多人, 或者观看这场演讲的人, 是因为你们获得了许多非常 了不起的成功机会。 我认为我们从中学会的是, 经常需要延迟满足。 也就是说,好的,你花了这些时间 学习,你接受教育, 你等待晋升, 你努力工作, 你埋头苦干, 才能达到下一个台阶。 这很棒,这很了不起。 但同时,我想提醒大家, 我们不能推迟生活, 也不能认为,嗯,你知道, 现在确实很艰难, 希望五年后会更好。 我认为有一个时候, 你必须为自己决定, 什么时候我是在这种 艰苦奋斗、延迟满足的状态。 我要付出时间, 然后以后再抬头看看。 什么时候你会对自己说, “这就是我现在的的生活?” 我将如何做出决定 并采取新的行动来改变我的生活、 我的家庭、我的社区、 我的世界,让它变得更好?
Original English
Kiah Williams: I think I already said no. I'm a very pessimistic human. In a lot of ways, on a daily basis. But I am, it's interesting, I don't know that I have always hope. I know that I have faith. And I know that I have faith, weirdly, in this country. I have faith in humanity. And I think going back to what is the vision that you want to see and what is the world you want to live in, like, it's much better for me, and I can wake up and be happy and recharged thinking about this world and humanity as a race that is ultimately going to save itself than it is to think about this country or humanity as a race that's going to implode and destroy itself. It's helpful to hear. So ... I think, yeah, a lot of us are tired, like, people are tired. And at the same time, like, this is it. Like, I think you had mentioned previously this concept of short-term pain, long-term gain. I think many of us are in this room or watching this talk, because you've had a lot of really cool opportunities to be successful. And I think what we learned from that is delayed gratification oftentimes. To say, OK, you put in these hours studying, you do schooling, you wait for that promotion, you work hard, you put your head down and you grind to get to some next step. And that is great, that is awesome. At the same time, I want to just raise the alarm that we cannot defer life and we cannot think about like, well, you know, right now is really challenging, hopefully five years from now to be better. I think that there is a time in which you have to decide for yourself, when am I in that grind-it-out, delayed gratification. I'm going to just put in the time and then pop my head out later. And when are you going to say to yourself, like, this is my life now? How am I going to make decisions and take new actions that change my life, my family, my community, my world for the better?
Alexandra Tillmann: 我觉得这太有力量了。 David,关于这一点,你有什么想补充的吗?
Original English
Alexandra Tillmann: I find that so powerful. David, anything you want to add to that?
David Fajgenbaum: 我完全同意 Kiah 所说的一切。 我觉得我可能更偏向于 更乐观、更有希望的那一端。 我觉得这很好, 我觉得重要的是找到某种平衡。 我觉得我们能够一起工作, 做艰难的事情,这很重要。 但我想说的是,我呢, 我有一种关于 用可能的手段去治疗 那些患有可怕的、致命疾病的病人 的心态。 我有机会看到那些 曾向家人告别的人, 那些奄奄一息的人, 却能用一款并非为其疾病设计的药物救了他们的命。 很难用言语形容。 当你看到一个人 字面意义上地“死而复生”, 当你真的看到一个人 搀扶着女儿走红毯, 听到他们的孩子 第一次对他们说话。 这些事情太强大了, 它们给你带来巨大的能量。 很难形容。 我觉得这是其中的一部分, 当你与你爱的人告别, 然后你醒来,你会想,哦天哪, 我又多了一天。 这太不可思议了。 它给生命带来了一种光彩, 对我来说,这种光彩很难被过度强调。 但同时, 我们也有无法帮助的病人, 也有我们尽了一切努力 但他们仍然死于疾病的病人, 我们如此努力地研究那些疾病, 我们如此渴望找到治疗方法 但就是找不到。 所以,我觉得当 你把所有这些结合起来时, 就是生命的兴奋感, 以及我们都在这里的事实, 这太不可思议了, 能够帮助那些本不该在这里的人的兴奋感, 那些我们称之为“额外时间(overtime)”的生命, 但同时也伴随着 我们无法帮助的病人的痛苦, 伴随着我们尚未能治愈的疾病的痛苦, 让那种痛苦驱动更进一步的行动。
Original English
David Fajgenbaum: I just completely agree with Kiah in everything she said. I think I probably fall on the end of the spectrum of being maybe a little bit more optimistic and hopeful. Which I think is great, I think the important thing is that it's finding some balance. I think it's important that we get to work together and do tough things. But I think that what I would say is that I sort of, you know, have the mindset of what's possible in terms of treating patients with horrible, deadly diseases. And I get a chance to see people that said goodbye to their family, that were on their last legs and were able to save their life with a medicine that wasn't made for that disease. And it's hard for me to put it into words. Just what that means when you get to see someone come back, literally, from the dead, where you literally get to see someone walk their daughter down the aisle on their wedding day, get to hear their child speak to them for the first time. These things are so powerful and they give you so much energy. It's hard to describe. I think another piece of this is when you say goodbye to people you love, and you start to wake up and you're like, oh my gosh, I got another day. Like, this is incredible. It gives a glow to life that's hard for me to overemphasize. At the same time, we also have patients that we're not able to help and patients where we try everything for them and they still die from their disease, diseases that we're working on so hard, and we want treatment so bad and we just can't find them. And so I think that when you bring all those together, it's the excitement of life and the fact that we're all here and it's just amazing, the excitement of being able to help people that shouldn't be here, that are living what we call overtime, but it's also sitting with the pain of the patients we're not able to help, sitting with the pain of the diseases that we're not able to treat yet, and having that pain drive further action.
最后的启示:专注当下,做出选择
Alexandra Tillmann: 你会留给大家一件事什么? 或者,人们可以采取什么行动, 从今天开始改变自己的生活? Kiah,我先从你开始。
Original English
Alexandra Tillmann: What is one thing that you would leave people with? Or like, an action that people can take to start to like make change in their life starting today? Kiah, I'll start with you.
Kiah Williams: 我认为我们正处于一个不可思议的时刻, 思考什么对你来说真正重要, 什么才是真正重要的,不是那些—— 每个人都说他们在乎一百万件事情,对吧? 因为,像,要成为一个好人, 要成为一个好人, 你必须关心很多事情。 你必须做所有的事情, 你必须投票,你必须回收。 你必须每六个月去看一次牙医。 就像,所有这些事情我们都必须做。 我觉得太多了。 有太多的事情了。 感觉自己是一个做好事的好人, 这太难了。 我认为这是一个时刻—— 我一直在思考这件事, 因为我有一个新的优先事项, 那就是我现在有了孩子。 我该如何专注于那些 真正重要的事情呢? 对我来说,就是更真实地理解 对我自己而言, 什么是那些—— 对我来说,就是, 什么事情会困扰我? 什么事情会激怒我, 我为哪些事情感到兴奋? 对我来说,一切都与那些 强烈的情感爆发有关, 以及我如何将我的生活、我的工作 和我的使命集中在影响它们上。 而且对我来说,这是我选择 如何去做的方式, 就是深入研究几个领域, 然后可能需要说, 过去六个月我可能没去看牙医, 然后,我对此 OK。 就像,也许我需要从 这些事情中休息一下, 因为我想专注于那些其他事情。 所以,我认为这真的就是 理解对你而言, 什么才是 真正深刻重要的, 并针对这些采取行动, 因为你需要认识到, 你不可能做所有的事情。 而我是一个 想做所有事情的人。 所以,我觉得与其为此 感到非常难过, 不如将其作为一种赋权 对自己说:我做不了所有事, 但我将要做的事情, 我会做得非常好, 我会非常专注, 我会在这些领域看到影响。
Original English
Kiah Williams: I think we're in an incredible moment where thinking about what really matters to you, what really matters, not the things -- There's a million things that everyone says that they care about, right? Because, like, to be a good human, to be a good person, you must care about a lot of things. You must do all the things, you must vote, you must recycle. You must go to see your dentist every six months. Like, there's all these things that we all have to do. I think there's too much. There's so many things. It's so hard to feel like you are a good person that is doing good things. And I think this is a time -- I've really been thinking about this because I have a new priority, which is I have a child now. It's how do I focus on the things that actually really matter? And for me, it’s understanding more authentically for myself, what are the things that, like -- for me, it's again, it's like, what are the things that bother me? What are the things that anger me, what are the things I'm excited about? Like, for me, it's all about the strong emotions that come out and how do I focus my life and my work and my mission on impacting those. And it's going to have to be, for me, the way I choose to do that, is going deep in a couple areas and having to maybe say, I maybe didn't go to the dentist in the last six months and like, I'm OK with that. Like, maybe I'm taking a break from some of these things because I want to focus on these others. So I think it's really just understanding for you what are the things that actually just deeply matter and taking action on those because it's the recognition you can't do everything. And I'm a person who wants to do everything. And so I think rather than being really sad about that, it's using that as the empowering statement to myself to say, I can't do everything but the things I'm going to do, I'm going to do really well, I'm going to be really focused and I'm going to see impact in those areas.
Alexandra Tillmann: 但每六个月去看一次牙医确实非常重要, 别忘了。 David,简单说一下。
Original English
Alexandra Tillmann: But it is very important to go to the dentist every six months, don't forget that. David, just quickly.
David Fajgenbaum: 好的,我非常同意 Kiah 的观点。 我认为我之所以能够 一直在这种状态下, 是因为我将我差点第一次死掉的那一刻 视为我“额外时间(overtime)”的开始。 “额外时间”是一种许多人都能理解的感受。 想象一下在一场体育比赛结束时, 比赛进入了加时赛, 如果你正在参加这样的比赛, 处于加时赛会很可怕,因为,随时, 比赛都可能结束, 如果你在加时赛中犯错, 比赛就结束了。 如果在上半场犯错, 你还有机会弥补。 所以加时赛可能非常可怕。 但加时赛也可能 非常清晰。 当你处于加时赛时, 你只会专注于赢得比赛最重要的事情, 无论那场体育比赛是什么。 所以,我发现对我来说, 我现在已经处于这种 “额外时间”的状态15年了, 我想我现在可能进入第五个 “额外时间”了。 但在这种“额外时间”里,它帮助我 摒弃了杂念, 那些我不在乎的事情, 那些对我来说不重要的事情, 只专注于那些对我来说真正重要的事情。 所以,我想我,在我25岁的时候, 就大致意识到 我们都在“额外时间”里。 但事实是,我们都在“额外时间”里。 而且,你知道,我们没有人知道 我们的“额外时间”会持续多久。 但我们所有人都能充分利用 “额外时间”的每一秒。
Original English
David Fajgenbaum: Sure, so, completely agree with Kiah's points. And one way that I've sort of framed this in a way that's been really helpful for me, is that I've considered the moment that I nearly died for the first time to be the start of my overtime. And overtime is a sense that many of us can relate to. So think about at the end of a sporting event where your game goes into overtime, and if you're playing in one of those games, it can be really scary to be in overtime because like, at any minute, the game could end, if you make a mistake in overtime, the game is over. Make a mistake in the first half the game, you can make up for it. So overtime can be really scary. But overtime can also be really clarifying. When you're in overtime, you focus only on the things that are most important to win, whatever that sporting event is. And so I found for me that I've been in the state of overtime now for 15 years, I guess I'm in my fifth overtime by now. But in this overtime, it helps me to sort of cut out the noise, the things that I don't care about, the things that aren't important to me, and to just focus on the things that are really important to me. And so I think that I've, when I was 25, sort of first realized that we're all in overtime. But the truth is, we're all in overtime. And, you know, none of us know how long our overtime is going to go for. But all of us have the ability to make the most of every second in overtime.
Alexandra Tillmann: 这是一个很棒的结束方式。 David,Kiah,非常感谢你们带来这场精彩的对话。 (掌声)
Original English
Alexandra Tillmann: What a great way to end. David, Kiah, thank you so much for a great conversation. (Applause)