返回首页

SharonTerry_2016P-_科学界不了解我孩子的罕见疾病，直到我决定开始研究它。_
The best Christmas my children ever had was also the worst Christmas my husband and I ever had. 我的孩子们过的最好的圣诞节 却也是我丈夫和我过的最差的 圣诞节。
Elizabeth, age seven, and her brother, Ian, age five, couldn't imagine why they were getting everything they wanted for Christmas. 7岁的伊丽莎白和 她5岁的弟弟伊恩 想不出为什么他们那年圣诞节得到了 所有想要的圣诞礼物。
The reason Santa was so generous was because of something my husband Pat and I knew and the kids couldn't comprehend . 那一年圣诞老人如此慷慨是因为 我丈夫帕特和我知道了一些事情, 孩子们当时并不能理解的事情。
generous:adj.慷慨的,大方的;宽宏大量的;有雅量的; Pat:v.合适; n.拍打; adj.过于简易的; v.(喜爱地)轻拍; comprehend:v.理解;包含;由…组成;
Something that we had just learned, and it terrified us. 这事情我们刚弄清楚就吓坏了我们。
This was 1994 and the story actually starts a few years earlier. 这发生在1994年, 事实上故事要从更早的几年说起。
For a couple of years I had noticed a rash on the sides of Elizabeth's neck that looked like prickly heat . 那几年, 我注意到伊丽莎白脖子边上的皮疹, 看起来像是痱子。
rash:adj.轻率的;鲁莽的;不顾后果的;n.[皮肤]皮疹;突然大量出现的事物; prickly heat:n.痱子;
For those same years, my father and brother both died of cancer , and I was probably overanxious about illness. 在相同的几年间, 我的父亲和兄弟都死于癌症。 因此我对疾病过度焦虑。
cancer:n.癌症;恶性肿瘤; overanxious:adj.过于焦急的;过度操心的;
The doctors assured us there was nothing wrong and I shouldn't worry, but I wasn't so sure. 医生向我们保证这不会有问题, 并且告诉我不必担心, 但我还是不太相信。
assured:adj.确定的;自信的;n.被保险人;v.保证;确实;(assure的过去分词和过去式);
And so without a referral , and paying out-of-pocket , 所以在没有转诊且缴了费的情况下,
referral:n.参照;提及;被推举的人;转诊病人; out-of-pocket:adj.现款支付的;不列入预算的;
I took Elizabeth to a dermatologist . 我带着伊丽莎白来看皮肤科的专家。
dermatologist:n.皮肤病医生;皮肤病专家;
She was probably just allergic to something, but why did it appear just on the sides of her neck, this rash? 她可能只是对一些东西过敏 但是为什么皮疹只出现 在她脖子两侧？
allergic:adj.对…过敏的;对…极讨厌的;
So it's two days before Christmas, 1994, and the dermatologist takes a quick look at her neck and says, "She has pseudoxanthoma elasticum." 1994年, 在圣诞节的前两天, 皮肤科专家看了一眼她的脖子便说道: “她患有弹性纤维性假黄瘤。”
pseudoxanthoma:n.假黄瘤;假性黄色瘤;
And then he shuts off the lights and looks in her eyes. 接着医生关了灯并看她的眼睛。
It turns out, by chance , this dermatologist also trained in ophthalmology . 原来,碰巧地, 这位皮肤科专家曾学过眼科学,
by chance:偶然;意外地; ophthalmology:n.[眼科]眼科学;
Our lucky day. 这真是我们的幸运日。
I am sick to my stomach. 我的胃里开始感到不适,
'"Oma?" “瘤？”
Oma's like melanoma , lymphoma -- cancer. 就像黑色素瘤和淋巴瘤——
melanoma:n.[肿瘤]黑素瘤;胎记瘤; lymphoma:n.[肿瘤]淋巴瘤;
'"Why are you looking in her eyes for a skin rash?" “为什么她皮肤有皮疹, 你却要看着她的眼睛？”
I scream and make no sound. 我心中无声地呐喊道。
So there it is. 就这样,
Elizabeth has pseudoxanthoma elasticum, 伊丽莎白患的是弹性纤维性假黄瘤,
PXE for short. 简称PXE。
Questions mix with fear and erupt like bile in my throat. 我心中充满疑惑和恐惧, 喉咙像是有胆汁要迸出来。
erupt:vi.爆发;喷出;发疹;长牙;vt.爆发;喷出; bile:n.胆汁;愤怒;
Why are you looking in her eyes? 为什么你一直看着她的眼睛？
What do you know about this? How do you know for sure? 你对此了解吗？ 你怎么那么确定？
What is the prognosis ? 预后又是什么？
prognosis:n.[医]预后;预知;
My training in pastoral counseling did not prepare me for this. 我在田园辅导时可没有学到这个。
pastoral:adj.牧师的;牧人的;田园生活的;乡村的;n.牧歌;田园诗;田园景色; counseling:n.咨询服务;v.建议;劝告;商讨;(counsel的现在分词形式)
Dr. Bercovitch tells us everything he knows about PXE. 伯科维奇医生告诉我们 他对PXE所知道的一切。
It's a rare genetic disorder , it's systemic , it's a slowly progressing, premature aging disease . 这是一种罕见的遗传疾病, 它具有系统性, 它是种病程缓慢的早衰症,
genetic:adj.基因的;遗传学的; disorder:n.混乱;骚乱;vt.使失调;扰乱; systemic:adj.系统的;全身的;体系的; premature:adj.早产的;不成熟的;比预期早的;n.早产儿;过早发生的事物; disease:n.病,[医]疾病;弊病;vt.传染;使…有病;
It causes loose wrinkly skin in the flexor areas. 它会使屈肌区的皮肤松弛,
loose:adj.宽松的; v.释放; v.松散地; n.放纵; wrinkly:adj.有皱纹的;易生皱纹的;n.老人(俚语); flexor:n.[解剖]屈肌;
It causes legal blindness, like macular degeneration , and a host of cardiovascular problems. 还会导致失明, 就像黄斑变性一样, 并能引起很多心血管问题。
legal:adj.法律的;合法的;法定的; macular:adj.有斑点的;有污点的; degeneration:n.退化;[医]变性;堕落;恶化; cardiovascular:adj.[解剖]心血管的;
Little is known about this disease, and some people die in their 30s, say some of the reports at the time. 我们对该种疾病知之甚少,
He then just glances at our son and says, "He has it, too." 然后他瞥了我们的儿子一眼说道: “他也有这种疾病。”
glances:n.一瞥(glance的复数形式);v.瞥闪,瞥见,反光(glance的第三人称单数形式);
We want to flee back to the land of normal. 我们多么想回到普通的生活。
flee:v.逃走;迅速离开;逃避,逃跑
Two days after Christmas, researchers come from a university in Boston , and they take blood from us and our children for a research project focused on finding the gene. 圣诞节后两天, 一些来自波士顿大学的研究人员 为了一个关于寻找基因的研究项目 他们从我们和孩子身上取走了血样。
Boston:n.波士顿(美国城市);
A few days later, researchers come from a medical center in New York and say they want blood, too. 几天后, 来自纽约医疗中心的研究人员 也来说想要血样。
'"These are children. “这些是孩子啊,
They're five and seven years old. 他们都只有5,7岁大而已,
Don't make them face the needle twice. 请不要让他们面对针管两次,
needle:n.针;针头;指针;缝针;v.穿过;刺激;拿针缝;拿针穿;
Go and get your share from the other researchers." 请你们离开, 让其他研究者与你们分享。”
They laugh, incredulous . 他们笑了并反问:
incredulous:adj.怀疑的;不轻信的;
'"Share?" “分享？”
It is then that we learn that there is little sharing in biomedical research. 那之后我们才知道, 在生物医学研究领域很少有分享的行为。
biomedical:adj.生物医学的;
This moment, more than any other, lit a fire beneath my husband Pat and me. 这一刻比任何时候都能
beneath:prep.在…之下;adv.在下方;
Pat and I went to a medical school library and we copied every article we could find on PXE. 帕特和我去了一间医学图书馆, 然后我们复印了 所有我们能找的关于PXE的资料。
We didn't understand a thing. 我们完全看不懂。
We bought medical dictionaries and scientific textbooks and read everything we could get our hands on. 我们就买医学词典和科学教材, 然后阅读我们手中的一切。
scientific:adj.科学的,系统的;
And though we still didn't understand, we could see patterns, and it became quickly apparent within a month that there was no systematic effort to understand PXE. 我们仍然不能弄明白, 我们可以看图, 一个月后,我们就发现了
apparent:adj.显然的;表面上的; systematic:adj.系统的;体系的;有系统的;[图情]分类的;一贯的,惯常的;
In addition , the lack of sharing that we experienced was pervasive . 另外,
addition:n.添加;[数]加法;增加物; pervasive:adj.普遍的;到处渗透的;流行的;
Researchers competed with each other because the ecosystem was designed to reward competition rather than to alleviate suffering. 研究人员互相竞争, 因为大环境是鼓励他们竞争 而非缓解痛苦的。
competed:v.竞争,对抗(compete的过去分词); ecosystem:n.生态系统; reward:n.[劳经]报酬;报答;酬谢;v.[劳经]奖励;奖赏; competition:n.竞争;比赛,竞赛; alleviate:v.减轻,缓和;
We realized that we would have to do work on this condition ourselves to find solutions for ourselves and others like us. 我们认识到 我们得在这种环境下寻找解决方法, 不仅为了我们, 也为了像我们一样的其他人。
But we faced two major barriers . 但是我们遇到了两大难题。
barriers:n.障碍;栅栏;篱笆墙(barrier的复数形式);
The first one: 第一个是:
Pat and I have no science background. 帕特和我没有科学背景
At the time, he's the manager of a construction company, and I'm a former college chaplain stay-at-home mom -- hardly the backgrounds to take the research world by storm. 当时,他是一家建筑公司的经理 而我以前是一位大学牧师兼家庭主妇—— 这让我们很难快速进行科学研究。
construction:n.建设;建筑物;解释;造句; chaplain:n.牧师;专职教士; stay-at-home:adj.不爱出门的;经常呆在家里的;n.不爱出门的人;经常呆在家里的人;
The second barrier: researchers don't share. 这第二个难题就是 研究人员不愿意分享。
People told us you can't herd cats. 人们告诉我们, 你不能让猫听你的话,
herd:n.兽群,畜群;放牧人;vi.成群,聚在一起;vt.放牧;使成群;
Well, yes you can if you move their food. 好吧,但其实你可以, 只要你拿走它们的食物。
(Laughter) （笑声）
(Applause) （掌声）
DNA and clinical data is the food. DNA和临床资料就是他们的食物,
clinical:adj.临床的;诊所的;
So we would collect blood and medical histories, and require that all scientists using these resources would share results with each other and with the people who donated . 所以我们收集了血样和医学史 并且要求所有用这些资源的科学家
resources:n.[计][环境]资源; v.向…提供资金(resource的第三人称单数); donated:v.捐赠,赠送;献(血);捐献(器官);(donate的过去分词和过去式)
Well before the internet was in common use, 在英特网还没广泛使用的时候,
Pat and I established PXE International, a nonprofit dedicated to initiating research and conducting it on PXE and also supporting individuals with the disease. 帕特和我建立了“PXE国际组织”, 它是一个致力于开展和引导PXE研究的 非营利组织, 它还支援患有该疾病的人。
established:adj.已确立的;著名的;v.建立;创立;设立;(establish的过去分词和过去式) nonprofit:adj.非赢利的;不以赢利为目的的; dedicated:adj.献身的; v.把…奉献给; (dedicate的过去分词和过去式) initiating:v.开始;发起;使了解;传授;使加入;(initiate的现在分词) conducting:v.组织;安排;实施;指挥;引导;导游(conduct的现在分词) individuals:n.[经]个人;[生物]个体(individual的复数);
Using traditional media , we garnered around 100-150 people around the world who we asked, would you give us your blood, your tissue , your medical histories, your medical records? 通过传统媒体, 我们收集了全球大约100到 150个人的资料。 他们会被我们问道: 你愿意给我们你的血样、组织样本、 用药记录
traditional:传统的,惯例的, media:n.媒体;媒质(medium的复数);血管中层;浊塞音;中脉; garnered:v.获得,得到,收集(信息、支持等);(garner的过去分词和过去式) tissue:n.纸巾,手巾纸;(人、动植物细胞的)组织;
And we brought all of that together. 然后我们就把这些收集到一起。
We quickly learned that this shared resource was not going to be enough. 我们很快认识到这种资源的分享 是远远不够的。
And so we decided we had to do hardcore bench science -- hardcore research. 因此我们决定去实验桌做研究—— 核心研究。
hardcore:adj.赤裸裸描写性行为的;n.硬核;硬底层;碎砖垫层;
So we borrowed bench space at a lab at Harvard . 所以我们在哈佛实验室里 借了一个工作台的空间。
Harvard:n.哈佛大学;哈佛大学学生;
A wonderful neighbor came a couple times a week while Pat and I extracted DNA, ran and scored gels and searched for the gene. 有一个不错的邻居一周会来几次, 让帕特和我可以安心提取DNA, 和寻找基因。
extracted:adj.萃取的;引出的;v.提取(extract的过去式及过去分词); gels:n.凝胶剂;定型发胶(gel的复数);v.形成胶体(gel的第三人称单数);
Generous postdocs tutored us as we went along. 一位热心的博士后指导我们。
postdocs:博士后研究者;流动人员;(postdocs是postdoc的复数)
Within a few years, we found the gene. 不过几年,我们就找到了基因。
We patented it so that it would be freely available. 我们获得了专利 然后它可以被免费使用。
patented:adj.专利的;
We created a diagnostic test. 我们创建了一个诊断测试,
diagnostic:adj.诊断的;特征的;n.诊断法;诊断结论;
We put together a research consortium . 我们组织了一个研究联盟。
put together:..放在一起;组合;装配; consortium:n.财团;联合;合伙;
We held research meetings and opened a center of excellence . 我们举办了研究会议 建立了技术中心。
excellence:n.优秀;美德;长处;
We found more than 4,000 people around the world who had PXE, and held patient meetings and did clinical trials and studies. 我们发现在全球有超过4000人 患有PXE, 我们还举行了一场病人交流会
patient:adj.有耐心的,能容忍的;n.病人;患者;
Through all this, we lived with fear. 经历所有这些事情的过程中, 我们一直很害怕。
Fear of the disease breathing down our neck while the clock ticked. 当钟声滴答作响的时候
Fear of researchers, so well credentialed and positioned in a world made for them. 害怕那些研究者们,
credentialed:v.受到信任(credential的过去式);
Fear that we were making the wrong choices. 害怕我们正在做着错误的选择。
Fear that the naysayers were right and the cats would simply find a new food. 害怕那些反对者是对的,
naysayers:n.否定者;拒绝者;老是唱反调的人;
But greater than all these fears was our drive to make a difference for our kids and for all those we had met along the way. 但是比这些害怕更重要的是 我们为了孩子们 和那些一路上遇到的人 所做出的努力。
make a difference:有影响,有关系;
And very quickly, we also realized what we were doing for one disease, we should do for all diseases . 很快地, 我也意识到我们只是在研究一种疾病, 我们应该研究所有的疾病。
diseases:n.[医]病(disease的复数);[医]疾病;[植保]病害;疾病种类;
We joined with, and I eventually led, 我们加入了并最终领导了
eventually:adv.最后,终于;
Genetic Alliance -- a network of health advocacy , patient advocacy , research and health organizations . “基因联盟”—— 一个拥护健康 拥护患者, 拥护患者,
Alliance:n.联盟,联合;联姻; advocacy:n.主张;拥护;辩护; organizations:n.组织,构造,有机体(organization的复数);组织机构;
We built scalable and extensible resources, like biobanks and registries and directories of support for all diseases. 我们构建了可规模化和可拓展的资源, 比如包括所有疾病的 生物信息库,注册信息和协助电话。
scalable:adj.可攀登的;可去鳞的;可称量的; extensible:adj.可伸长的;可扩展性; biobanks:生物银行; registries:登记;注册; directories:n.[计]目录,名录;指南;计算机文件或程序的目录(directory的复数);
And as I learned about all those diseases and all those disease communities , 我对所有这些疾病了解的越多, 对这些患病群体了解越多,
communities:n.社区;社会;团体;共有(community的复数)
I realized that there were two secrets in health care that were impacting me greatly . 我就越来越意识到 在卫生保健领域有两个秘密, 它们对我影响很大。
health care:n.卫生保健; impacting:[力]冲击;[力]撞击;[物]碰撞(impact的现在分词); greatly:adv.很,大大地;非常;
The first: there are no ready answers for people like my kids or all the people I was working with, whether common or rare conditions. 第一个就是 无论是对那些像我孩子一样的人 还是与我一起努力的人, 无论是普通还是罕见情况, 都没有现成的答案。
And the second secret: the answers lie in all of us together, donating our data, our biological samples and ultimately ourselves. 第二个秘密就是: 答案在我们每个人身上, 我们一起捐赠我们的数据, 生物样本, 最后奉献我们自己。
donating:v.捐赠,赠送;(donate的现在分词) biological:adj.生物学的;生物的;与生命过程有关的;加酶的;n.[药]生物制品; ultimately:adv.最终;最后;归根结底;终究;
There is a small groundswell of individuals who are working to change this. 目前有人在带领这股风潮, 他们正致力于改变科学研究的方式。
groundswell:n.海啸;地隆;
Citizen scientists, activists, hacks who are using crowdsourcing , do-it-yourself science are changing the game. 那些公民科学家、活动家和骇客们 正采用众包的方式, 做着自己的科学 正在改变这个游戏。
hacks:出租汽车;老马(hack的复数); crowdsourcing:众包;群众外包;众包模式; do-it-yourself:adj.自己动手的;n.自己动手;
Even President Obama and Vice President Biden are evangelists for the idea that people should be partners in research. 连总统奥巴马亦或是 副总统拜登 他们都传播这个理念: “公民应该参与科学研究。”
Vice:n.恶习;缺点;[机]老虎钳;卖淫;prep.代替;v.钳住;adj.副的;代替的; evangelists:n.福音传道者;圣经新约福音书的作者;
This is a founding principle of our organization. 这也是我们组织创立的原则。
principle:n.原理,原则;主义,道义;本质,本义;根源,源泉;
Sure, it's really hard to discover and develop interventions and therapies . 当然,研究并发展医学干预和治疗
interventions:n.[法]干预,干涉;处置(intervention的复数); therapies:n.治疗方法(therapy复数形式);
The science is hard, the regulatory regime is difficult. 科学本身就难, 法规也很严格。
regulatory:adj.管理的;控制的;调整的; regime:n.政权,政体;社会制度;管理体制;
There are a lot of stakeholders with lots of interests and misaligned incentives like publishing, promotion and tenure . 很多手中握有重大利益的投资人
stakeholders:n.利益相关者;赌款保存人(stakeholder的复数); misaligned:adj.方向偏离的; v.使不成一直线; incentives:n.激励;奖励;诱因(incentive的复数形式);奖励措施; tenure:n.任期;占有;vt.授予…终身职位;
I don't fault scientists for following this path, but I challenge them and us to do this differently. 我不怪科学家们跟他们走, 但我希望他们和我们一起 做些不一样的事情,
To recognize that people are at the center. 认识到“人”才是中心。
recognize:v.认识;认出;辨别出;承认;意识到;
Genetic Alliance has experimented in what it will take to transform these crusty systems. 要改变这些顽固的体系要做些什么,
transform:v.使改变;使改观;使转换;n.[数]变换式;[化]反式; crusty:adj.易怒的;执拗的;有壳的;像外壳一样的;
Our goal is to work without boundaries . 我们的目标是“工作无障碍“。
boundaries:n.边界;分界线;(boundary的复数)
That sounds abstract , but for us it's quite practical . 这听起来很抽象, 但是对于我们来说它是相当实际的。
abstract:n.摘要; adj.抽象的; vt.摘要; vi.做摘要; practical:adj.实际的;真实的;客观存在的;n.实习课;实践课;
When we're frustrated that entities won't share data -- data that comes from people who gave their energy, their time, their blood and even their tears -- we need to stop and ask, "How is it true that we could share, but we aren't?" 当我们感到沮丧的时候, （相关团体不愿意分享资料—— 那些来自人们的精力、时间、血样 甚至是他们眼泪的资料） 我们需要停住并问: “我们可以分享但我们却没这么做, 这是真的吗？”
frustrated:adj.失意的,挫败的;泄气的;v.挫败;阻挠;(frustrate的过去式和过去分词) entities:n.实体;存在(entity的复数形式);字符实体;
We're part of this system, too. 我们都是这个系统的一份子啊。
How do we make it so that people can share ideas freely? 我们要怎么做才能让人们 自由分享这些想法呢？
So that people can take risks and move closer to one another? 怎样才能让那些冒险的人们 团结在一起呢？
This leads to a dissolving of us versus them, not only for organizations but also for individuals. 这让我们不再和他们对抗, 这不仅仅是为了组织也为了个人。
dissolving:adj.消溶的;毁灭性的;v.使溶解(dissolve的现在分词); versus:prep.对;与...相对;对抗;
If I'm going to ask organizations or individuals to strive for these standards , then I too need to explore my own being and my practices. 如果我要组织或者个人 去为这些原则奋斗, 那或许我也要探索我自己 并付出行动。
strive for:争取,奋斗; standards:n.标准,水平,规格(standard的复数) explore:v.探索:探测:探险:
If I'm going to ask clinicians and researchers and administrators to take risks, then I, Sharon, need to take risks as well. 如果我要求临床医生,研究人员和 管理人员 那或许,我莎朗,也需要冒险。
clinicians:临床医生(clinician的名词复数); administrators:n.[管理]管理员;完全程序(administrator的复数形式);
I need to face my personal fears. 我需要面对自己的恐惧。
personal:adj.个人的;身体的;亲自的;n.人事消息栏;人称代名词;
My fear of not having enough impact. 面对我还没有足够影响力的恐惧,
My fear of not leading well. 面对我不能很好领导大家的恐惧,
My fear of not being enough. 面对我自己还不够格的恐惧,
Just before they entered their teens , our kids stopped us in our tracks and said, "You have to stop worrying about making a difference, making an impact, and instead, like us, learn to live with disease rather than fight it." 就在我们的孩子进入青少年之前, 他们用大人的口吻对我们 说道:“你们必须停止担心 你们要做出的改变, 产生的影响, 反之,要像我们, 学会和疾病共存, 而不是去抵抗它。”
teens:n.十多岁,十几岁;青少年; tracks:n.小道;足迹;车辙;轨道;v.追踪;跟踪;(track的第三人称单数和复数)
I have to ask, where does all my fear come from? 我不得不问, 我的恐惧从何而来？
The kids' declaration shines a spotlight on that fear. 孩子们的话像是灵光乍现, 让我明白那些恐惧
declaration:n.宣言;宣告;宣布;公告; spotlight:n.聚光灯;反光灯;公众注意的中心;v.聚光照明;使公众注意;
It arises from a bedrock of love. 是源于坚若磐石的爱,
arises:v.出现;发生;站立; bedrock:n.[地质]基岩;根底;基本原理;
I love Elizabeth and Ian. 我爱伊丽莎白和伊恩
I love people with PXE. 我爱患有PXE的人们
I love people with any disease. 我爱所有身患疾病的人们。
I love people. 我爱所有人。
Some of my colleagues have discovered that it is not death we fear, it is the enormity of our loving. 我的一些同事发现 我们害怕的不是死亡, 而是我们无尽的爱。
colleagues:n.同事;同行(colleague的复数); enormity:n.巨大;暴行;极恶;
This expansive love opens me to great pain as I face loss. 博爱给我带来的巨大痛苦 犹如我面对失去时 感受的痛苦一样。
expansive:adj.广阔的;扩张的;豪爽的;
As I discover my fear, 当我发现我的恐惧时,
I discover that I and all those around me have boundless capacity for love. 我发现 我和我周围人 都充满了无尽的爱。
boundless:adj.无限的;无边无际的; capacity:n.能力;容量;资格,地位;生产力;
And I also discover as I move into this fear, that I can learn many new things and find paths to things like practical solutions as well as the core of healing and health. 我还发现 当我进入这恐惧, 我可以学到很多新东西 并找到 还能找到治愈和恢复健康的关键。
as well as:也;和…一样;不但…而且; healing:n.康复; adj.痊愈中的; v.(使)康复,复原; (heal的现在分词)
I don't fear fear the way I used to. 我不再像以前一样恐惧。
In fact lately, with enormous support from all my fellow journeyers, 其实最近,在我同行的大力支持下
enormous:adj.庞大的,巨大的;凶暴的,极恶的;
I notice that it's not a warning the way it used to be. 我注意到恐惧不再是像以前那样 的一种警告方式,
I notice that instead, it's an invitation to go forward because in it lies love and the path to greater love. 反而是一种 因为这基于爱并通往更伟大的爱。
invitation:n.邀请,引诱
If I turn with gentle curiosity toward that fear, 如果我只是以温柔的好奇心 面对这些恐惧,
curiosity:n.好奇,好奇心;珍品,古董,古玩;
I find enormous wealth within myself and others and the ability to step into challenges that I never thought I could. 我发现我自己和身边的人 都内心充满感恩, 也充满了面对挑战的能力, 这是我从未想到的。
wealth:n.财富;大量;富有;
My kids are ahead of me on that path still. 我的孩子在这条路上仍然走在我前面。
At ages 29 and 27, they declare they are happy and healthy despite having manifestations of PXE in their skin and eyes and arteries . 他们分别29、27岁了 他们表示很开心很健康。 尽管他们的皮肤和眼睛还有血管上 都还表现出患PXE的现象。
despite:prep.尽管,不管;n.轻视;憎恨;侮辱; manifestations:n.临床表现(manifestion的复数);显示;证明; arteries:n.[解剖]动脉(artery的复数);v.给…提供动脉(artery的单数第三人称);
And so I invite you, us, we, to turn toward our fear; to embrace the things that scare us and find the love at the center. 所以我诚邀大家, 一起来面对恐惧; 去拥抱那些使我们恐惧的东西 在其中找到爱。
embrace:n.拥抱,怀抱;v.拥抱;乐意采纳(思想、建议等);信奉;包括;
We'll not only find ourselves there but we'll also be able to step into the shoes of those we fear and those who fear us. 我们不仅会发现自己在爱里, 我们还会代替我们害怕的人
If we breathe into that fear and are vulnerable with the systems and people who challenge us, our power as changemakers grows exponentially . 如果我们在恐惧中呼吸, 战胜挑战我们的系统和人们, 我们作为改变者的力量会 呈指数级别的增长。
vulnerable:adj.易受攻击的,易受…的攻击;易受伤害的;有弱点的; changemakers:变革者;创革者;爱创家; exponentially:adv.以指数方式;
And when we realize that working on our inner life is working on our outer life and outer work is inner work, we get down to what is real and shit gets done. 接着我们意识到 改变我们的内在世界 就是改变我们的外在世界, 我们的外在世界呈现的 就是我们的内在世界, 然后我们就能寻求真理,
inner:n.内部;射中接近靶心部分的一发;adj.里面的;向内的;内部的;接近中心的; outer:adj.外面的,外部的;远离中心的;n.环外命中; get down to:开始认真考虑;着手处理;
(Laughter) （大笑）
There is no limit to what we can accomplish together. 让我们一起同心协力, 创造无限可能。
accomplish:v.完成;实现;达到;
Thank you. 谢谢！
(Applause) （掌声）