The best Christmas my children ever had was also the worst Christmas my husband and I ever had. Elizabeth, age seven, and her brother, Ian, age five, couldn't imagine why they were getting everything they wanted for Christmas. The reason Santa was so generous was because of something my husband Pat and I knew and the kids couldn't comprehend. Something that we had just learned, and it terrified us.
我家小孩這輩子最開心的聖誕節, 卻是我和我先生 這輩子最難過的聖誕節。 七歲的伊莉莎白, 還有她五歲的弟弟,伊恩, 他們簡直不敢置信,為什麼可以在 聖誕節得到他們想要的一切。 聖誕老公公如此慷慨的原因, 是因為我的先生派德 和我能明白的東西, 孩子們並不能理解。 這東西我們才弄清楚 就嚇壞了我們。
This was 1994 and the story actually starts a few years earlier. For a couple of years I had noticed a rash on the sides of Elizabeth's neck that looked like prickly heat. For those same years, my father and brother both died of cancer, and I was probably overanxious about illness. The doctors assured us there was nothing wrong and I shouldn't worry, but I wasn't so sure. And so without a referral, and paying out-of-pocket, I took Elizabeth to a dermatologist. She was probably just allergic to something, but why did it appear just on the sides of her neck, this rash?
1994 年, 事實上故事要從更早幾年說起。 那幾年,我注意到 伊莉莎白脖子邊上的皮疹, 看起來像是痱子。 同樣在那幾年,我父親與哥哥 兩個都因為癌症過世, 我當時可能對疾病反應過度了。 醫生向我們保證絕對沒事, 叫我不要擔心。 但我還是不放心。 在沒有醫師轉診 並完全自費的情況下, 我帶伊莉莎白去找一位皮膚科專家。 她可能只是對某樣東西過敏, 但皮疹為什麼只出現在 她的脖子邊上?
So it's two days before Christmas, 1994, and the dermatologist takes a quick look at her neck and says, "She has pseudoxanthoma elasticum." And then he shuts off the lights and looks in her eyes. It turns out, by chance, this dermatologist also trained in ophthalmology. Our lucky day. I am sick to my stomach. "Oma?" Oma's like melanoma, lymphoma -- cancer. "Why are you looking in her eyes for a skin rash?" I scream and make no sound.
在聖誕節前二天, 1994 年, 皮膚科專家看了一下 她的脖子便說道: 「她患有彈性纖維性假黃瘤。」 然後他關起燈來,看著她的眼睛。 原來,很剛好, 這位皮膚科醫師也曾學過眼科學。 我們真幸運。 我的胃開始不舒服。 是「瘤」嗎? 就像是黑色素瘤、 淋巴瘤那樣的癌症嗎? 「為什麼皮膚疹要看眼睛?」 我心中無聲地吶喊著。
So there it is. Elizabeth has pseudoxanthoma elasticum, PXE for short. Questions mix with fear and erupt like bile in my throat. Why are you looking in her eyes? What do you know about this? How do you know for sure? What is the prognosis? My training in pastoral counseling did not prepare me for this.
果然, 伊莉莎白得的是彈性纖維性假黃瘤, 簡稱「PXE」。 我心中充滿了恐懼與疑惑, 喉嚨像是有膽汁要噴出來一樣。 你為什麼要看她的眼睛? 你對此了解嗎?你怎麼那麼確定? 預後是什麼? 我在教牧輔導的訓練 可沒有學到這個。
Dr. Bercovitch tells us everything he knows about PXE. It's a rare genetic disorder, it's systemic, it's a slowly progressing, premature aging disease. It causes loose wrinkly skin in the flexor areas. It causes legal blindness, like macular degeneration, and a host of cardiovascular problems. Little is known about this disease, and some people die in their 30s, say some of the reports at the time. He then just glances at our son and says, "He has it, too." We want to flee back to the land of normal.
柏克維奇醫生告訴了我 他對 PXE 所知道的一切。 這是一種罕見的遺傳性疾病, 它會全身發病, 是種病程緩慢的早衰症。 它會使屈肌區的皮膚鬆弛。 還會導致失明, 像是黃斑病變, 甚至會造成心血管疾病。 人們對此疾病所知甚少, 有些病人會在 30 多歲就死亡, 有些報告是這麼說的。 然後醫生看了一下我兒子又說: 「他也有。」 我們想回到以前正常的日子。
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. A few days later, researchers come from a medical center in New York and say they want blood, too. "These are children. They're five and seven years old. Don't make them face the needle twice. Go and get your share from the other researchers." They laugh, incredulous. "Share?" It is then that we learn that there is little sharing in biomedical research.
聖誕節後第二天, 來自波士頓一所大學的研究人員, 為了尋找該基因的研究專案, 從我們和孩子身上取走了血樣。 幾天後, 紐約一所醫學中心的 研究人員也來了, 說他們也想要血樣。 「他們只是小孩子啊! 一個五歲、一個七歲。 請不要讓他們再一次面對針頭。 請你們離開去找 其他研究者與你們分享。」 他們簡直不敢相信地笑著, 「分享?」 後來我們才知道,
This moment, more than any other,
原來生物醫學界領域, 彼此是很少分享的。
lit a fire beneath my husband Pat and me. Pat and I went to a medical school library and we copied every article we could find on PXE. We didn't understand a thing. We bought medical dictionaries and scientific textbooks and read everything we could get our hands on. 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.
當下,就在那刻, 我先生派德和我就火大了。 我們去了一家醫學院的圖書館, 影印了每篇我們所找到的 有關 PXE 的文章。 我們根本一點都不懂。 我們買了醫藥字典和科學教科書, 閱讀我們手邊所有的資料。 雖然我們仍然不懂, 但我們可以看圖, 一個月後我們很快就了解 這個疾病缺乏系統性的研究。
In addition, the lack of sharing that we experienced was pervasive. Researchers competed with each other because the ecosystem was designed to reward competition rather than to alleviate suffering. We realized that we would have to do work on this condition ourselves to find solutions for ourselves and others like us. But we faced two major barriers. The first one: Pat and I have no science background. 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. The second barrier: researchers don't share. People told us you can't herd cats. Well, yes you can if you move their food.
另外, 不願分享的情形到處可見。 研究人員之間是相互競爭的, 因為大環境的設計鼓勵他們競爭, 而非減緩痛苦。 我們認知到我們得在這樣的環境下 工作並尋找解決方法, 不僅為了我們, 更為了像我們一樣的其他人。 但我們遇到了兩大難題。 第一: 派德和我都沒有科學的背景。 當時,他只是一家建築公司的經理, 而我以前是一位 大學牧師兼家庭主婦, 根本沒有足夠的背景 來快速了解科學研究。 第二個難題就是: 研究人員根本不願意分享。 大家都說,你無法讓 一群貓聽你的話。 其實,你可以的, 只要你移動牠們的食物。
(Laughter)
(笑聲)
(Applause)
(掌聲)
DNA and clinical data is the food. 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.
DNA 及臨床資料就是他們的食物。 所以,我們收集了血樣及用藥歷史, 並要求所有使用這些資源的科學家, 要彼此分享研究成果, 還要分享給捐贈人。
Well before the internet was in common use, Pat and I established PXE International, a nonprofit dedicated to initiating research and conducting it on PXE and also supporting individuals with the disease. 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? And we brought all of that together.
在網路尚未被廣泛使用時, 派德和我建立了「PXE 國際組織」, 它是一個致力於開展和引導 PXE 研究的非營利組織, 並為患有該疾病的人提供支持。 透過傳統媒介, 我們收集了全球大約 100 到 150 個人的資料, 我們會問他們, 你願意給我們你的 血樣、組織樣本、用藥紀錄 和病歷嗎? 然後我們把這些資料整理起來。
We quickly learned that this shared resource was not going to be enough. And so we decided we had to do hardcore bench science -- hardcore research. So we borrowed bench space at a lab at Harvard. A wonderful neighbor came a couple times a week and sat with the kids from 8pm to 2am while Pat and I extracted DNA, ran and scored gels and searched for the gene. Generous postdocs tutored us as we went along. Within a few years, we found the gene. We patented it so that it would be freely available. We created a diagnostic test. We put together a research consortium. We held research meetings and opened a center of excellence. We found more than 4,000 people around the world who had PXE, and held patient meetings and did clinical trials and studies.
我們很快了解到 這樣的資源分享是遠遠不夠的。 因此我們決定去實驗室做—— 紮實的基礎研究。 所以我們在哈佛大學 借了一個工作台, 有一個很好心的鄰居一周會來幾次, 從晚上八點到凌晨兩點陪伴孩子們, 讓派德和我可以安心地抽取 DNA、 跑凝膠、 尋找基因。 另外有一些慷慨的 博士後人員在指導我們。 不過幾年,我們就找到了基因。 我們取得了專利以便免費使用。 我們建立了一個診斷的測試方法, 我們組織了一個研究聯盟, 我們舉辦研討會並建立了卓越中心。 我們發現,全球有超過 4000 人患有 PXE, 所以我們舉行了一場 病患交流會 並做了臨床試驗和研究。
Through all this, we lived with fear. Fear of the disease breathing down our neck while the clock ticked. Fear of researchers, so well credentialed and positioned in a world made for them. Fear that we were making the wrong choices. Fear that the naysayers were right and the cats would simply find a new food. 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. And very quickly, we also realized what we were doing for one disease, we should do for all diseases.
整個過程裡, 我們一直很害怕。 我們很害怕這個疾病緊迫盯人, 時間不夠用, 害怕那些 在全世界有良好信譽和 地位的研究專家。 害怕我們做出了錯誤的選擇。 害怕那些唱反調的人是對的, 害怕貓能輕鬆地找到新食物。 但比起這些害怕,更偉大的事是: 我們要為孩子與 一路上遇到的人做出改變。 很快地, 我們意識到了 我們只是在研究一種疾病, 我們應該為所有人研究所有的疾病。
We joined with, and I eventually led, Genetic Alliance -- a network of health advocacy, patient advocacy, research and health organizations. We built scalable and extensible resources, like biobanks and registries and directories of support for all diseases. And as I learned about all those diseases and all those disease communities, I realized that there were two secrets in health care that were impacting me greatly. 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. And the second secret: the answers lie in all of us together, donating our data, our biological samples and ultimately ourselves.
我們加入並之後帶領了 「基因聯盟」── 這是一個推廣健康、 病患權益的 衛生研究組織。 我們建構了可規模化 和可拓展的資源, 像是生物銀行、 疾病支援的登錄與所有協助電話。 當我愈了解這些疾病, 愈了解病患社群, 我就愈來愈意識到 在衛生保健有兩個秘密, 它們對我影響很大。 第一: 無論是我的孩子 或是所有與我一起努力的人, 對他們來說,都沒有現成的答案。 無論是普通疾病還是罕見疾病。 第二個秘密: 答案就在大家身上, 我們要一起捐出我們的數據, 我們的生物樣本, 最終奉獻我們自己。
There is a small groundswell of individuals who are working to change this. Citizen scientists, activists, hacks who are using crowdsourcing, do-it-yourself science are changing the game. Even President Obama and Vice President Biden are evangelists for the idea that people should be partners in research. This is a founding principle of our organization. Sure, it's really hard to discover and develop interventions and therapies. The science is hard, the regulatory regime is difficult. There are a lot of stakeholders with lots of interests and misaligned incentives like publishing, promotion and tenure. I don't fault scientists for following this path, but I challenge them and us to do this differently. To recognize that people are at the center.
目前已經有些人帶領了這個風潮, 他們正致力於改變這件事。 這些素人科學家、行動家、駭客們 正透過群眾外包、DIY 科學 改變遊戲規則。 連歐巴馬總統及副總統拜登 都在倡導傳播 「人人應該成為研究的合夥人 」 這樣的理念。 這也是我們組織創立的初衷, 當然, 無論是干預或治療的領域, 其研究及發展都是很艱辛的, 科學本身就難, 法規也很嚴格。 很多手中握有重大利益的投資人 以不當的激勵方式, 比如以發佈、晉升、 提供終生職位的方式吸引著科學家。 我不能怪科學家們跟他們走, 但我希望他們也能和我們一樣, 認知到「人」才是中心。
Genetic Alliance has experimented in what it will take to transform these crusty systems. Our goal is to work without boundaries. That sounds abstract, but for us it's quite practical. 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?" We're part of this system, too. How do we make it so that people can share ideas freely? So that people can take risks and move closer to one another?
基因聯盟已經分析過 要付出多少才能 改變這些根生蒂固的體系。 我們的目標就是「工作無障礙」。 這聽起來很抽象, 但是對我們來說,這是最實際的。 當我們面對相關團體 不願意分享資料時的沮喪── 這些來自大眾的精力、時間、血樣, 甚至是他們眼淚的資料── 我們不禁要停下來質問, 「可以分享,但卻不願意做, 這是真的嗎」? 大家都是其中的一分子啊。 我們要怎麽做才能讓人們 自由地分享這些想法呢? 怎麽做才能讓大家一起共患難, 肩並肩走在一起呢?
This leads to a dissolving of us versus them, not only for organizations but also for individuals. 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. If I'm going to ask clinicians and researchers and administrators to take risks, then I, Sharon, need to take risks as well. I need to face my personal fears. My fear of not having enough impact. My fear of not leading well. My fear of not being enough.
這樣做,合群的我們 才能和他們對抗, 這不僅是為了組織著想, 也是為病人的利益著想。 但如果我要求組織或個人這樣做, 要求他們也要遵守這些原則, 那我也要反思我自己 並實際拿出行動。 如果我要求臨床醫生、 研究人員和管理者去冒險, 那,我莎朗,也需要冒險。 我需要面對我個人的恐懼。 面對我自己還不夠有影響力的恐懼。 面對我會領導無方的恐懼。 面對我自己仍不夠格的恐懼。
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." I have to ask, where does all my fear come from? The kids' declaration shines a spotlight on that fear. It arises from a bedrock of love. I love Elizabeth and Ian. I love people with PXE. I love people with any disease. I love people. Some of my colleagues have discovered that it is not death we fear, it is the enormity of our loving. This expansive love opens me to great pain as I face loss.
就在孩子進入青少年時期前, 孩子用大人的口吻對我們說: 「你們不要再擔心 會不會做出的改變、 會不會帶來影響這些事, 反之,你們要和我們一樣, 與疾病共舞,而不是抵抗它。」 我必須問, 我的這些恐懼是從哪來的? 孩子們對我說的話, 像是靈光乍現,讓我明白到: 我的恐懼是來自堅若磐石的愛。 我愛伊莉莎白和伊恩。 我愛患有 PXE 的人們。 我愛所有生病的人。 我愛每一個人。 我其中的一些夥伴發現, 我們害怕的不是死亡, 而是我們無盡的愛。 博愛所帶給我的痛苦 就如同我面對失去一樣。
As I discover my fear, I discover that I and all those around me have boundless capacity for love. 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.
所以當我發現我的恐懼, 我發現: 我和我身旁的人, 都充滿了無盡的愛。 而且我還發現, 當我沉浸在恐懼時, 我可以學很多新事物, 並找到 實用的解決方法, 還有治癒及回復健康的關鍵。
I don't fear fear the way I used to. In fact lately, with enormous support from all my fellow journeyers, I notice that it's not a warning the way it used to be. I notice that instead, it's an invitation to go forward because in it lies love and the path to greater love. If I turn with gentle curiosity toward that fear, I find enormous wealth within myself and others and the ability to step into challenges that I never thought I could.
我不再像以前一樣害怕。 其實最近,在眾同行者大力支持下, 我注意到,過去的這些現象 不再是一種警告。 反而是一種, 前進的動力, 因為這裡面充滿了愛, 它能帶我們通往更偉大的愛, 如果我以溫柔的好奇心 來面對這些恐懼, 我發現我和身邊的人, 內心都有著滿滿的感恩, 也充滿了面對挑戰的勇氣, 而這些都是我從未想過的。
My kids are ahead of me on that path still. At ages 29 and 27, they declare they are happy and healthy despite having manifestations of PXE in their skin and eyes and arteries. 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. 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. If we breathe into that fear and are vulnerable with the systems and people who challenge us, our power as changemakers grows exponentially. 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.
孩子們在這條路上 比我還要樂觀。 他們現在一個 29 歲、一個 27 歲, 他們說他們現在很開心、健康, 儘管他們的皮膚、眼睛 還有動脈上仍有 PXE 的現象。 所以,我想邀請各位, 大家一起來面對恐懼; 擁抱我們害怕的事情, 在當中尋找愛。 我們不僅會發現自己就在愛裡, 更能真正體會我們恐懼的人, 及害怕我們的人。 如果我們能在那種恐懼中呼吸, 在挑戰我們的系統 和那些人面前保持柔軟, 我們改變遊戲規則的力量 就能呈指數型成長。 而當我們意識到, 戰勝內在恐懼就能戰勝外在恐懼、 發現外在恐懼就等於內在恐懼時, 我們就能追尋真理, 並搞定鳥事。
(Laughter)
(笑聲)
There is no limit to what we can accomplish together.
我們一起同心協力, 能創造出無限可能。
Thank you.
謝謝。
(Applause)
(掌聲)