This back here was my brain cancer. Isn't it nice? (Laughter) The key phrase is "was," phew. (Applause)
后面这图曾是我的脑癌, 酷吧? (笑声) 关键词是“曾是”, 咻!~~~ (掌声)
Having brain cancer was really, as you can imagine, shocking news for me. I knew nothing about cancer. In Western cultures, when you have cancer, it's as if you disappear in a way. Your life as a complex human being is replaced by medical data: Your images, your exams, your lab values, a list of medicines. And everyone changes as well. You suddenly become a disease on legs. Doctors start speaking a language which you don't understand. They start pointing their fingers at your body and your images. People start changing as well because they start dealing with the disease, instead of with the human being. They say, "What did the doctor say?" before even saying, "Hello."
得了脑癌,正如大家可以想象, 这消息使我震惊。 我那时对癌症一无所知。 在西方文化,得了癌症, 意味着在一定程度上如同消失。 你多彩的生活被医学数据取代: 扫描图像、诊断、实验数据、 药物清单, 而且每个人也变得不同。 你突然变成一团行走的病菌。 医生开始说你听不懂的语言, 他们开始用手指, 在你的身体和扫描图像上比划。 人们也开始改变, 因为他们开始要和疾病打交道, 而不是和人类。 他们说:“医生怎么说?”, 甚至先于说“你好”。
And in the meanwhile, you're left with questions to which nobody gives an answer. These are the "Can I?" questions: Can I work while I have cancer? Can I study? Can I make love? Can I be creative? And you wonder, "What have I done to deserve this?" You wonder, "Can I change something about my lifestyle?" You wonder, "Can I do something? Are there any other options?"
与此同时, 你有了许多没人能解答的问题。 这些是“我能?”问题: “我能带着癌症上班吗?” “我能学习吗?我能做爱吗? 我能有创造力吗?” 你想知道: “我做了什么使我落到这个下场呢?” 想知道:“我能改变我的生活方式吗?” 想知道:“我能做什么呢? 有别的选择吗?”
And, obviously, doctors are the good guys in all these scenarios, because they are very professional and dedicated to curing you. But they also are very used to having to deal with patients, so I'd say that they sometimes lose the idea that this is torture for you and that you become, literally, a patient -- "patient" means "the one who waits." (Laughter) Things are changing, but classically, they tend to not engage you in any way to learn about your condition, to get your friends and family engaged, or showing you ways in which you can change your lifestyle to minimize the risks of what you're going through. But instead, you're forced there to wait in the hands of a series of very professional strangers.
显然,医生在这些情况下都是好人, 因为他们非常专业且用心给你治疗。 但是他们经常必须与很多病人打交道, 我要说, 他们有时会忘了这对你是一种折磨, 你就成了,字面上,”病人“—— 这里“病人”是指“耐心等候的人”。 (笑声) 事态一直在改变,但经典的是, 他们绝不打算让你参与了解病情, 而是让你的朋友或家人参与; 也不告诉你任何改变生活方式的方法, 来减少你正在经历的风险。 取而代之的是你被迫等待, 受制于一群非常专业的陌生人。
While I was in the hospital, I asked for a printed-out picture of my cancer and I spoke with it. It was really hard to obtain, because it's not common practice to ask for a picture of your own cancer. I talked to it and I said, "Okay, cancer, you're not all there is to me. There's more to me. A cure, whichever it is, will have to deal with the whole of me." And so, the next day, I left the hospital against medical advice. I was determined to change my relationship with the cancer and I was determined to learn more about my cancer before doing anything as drastic as a surgery.
当我在医院的时候 我要了一张我的肿瘤的图像, 并且与它说话。 这很难弄得到, 因为去要自己的肿瘤的图像, 的确不是寻常的举动。 我跟它交流,说: “好吧,肿瘤兄,对我来说你不是全部, 我还有更多。 (不公平的是,)不管是哪种治疗, 都会牵扯到整个我。” 所以,第二天, 我不顾医生的建议就离开了医院。 我下定决心要改变我与肿瘤的关系, 并决心更多地了解我的肿瘤, 在做外科手术这样猛烈的事情之前。
I'm an artist, I use several forms of open-source technologies and open information in my practice. So my best bet was to get it all out there, get the information out there, and use it so that it could be accessed by anyone. So I created a website, which is called La Cura, on which I put my medical data, online. I actually had to hack it and that's a thing which we can talk about in another speech. (Laughter) I chose this word, La Cura -- La Cura in Italian means "the cure" -- because in many different cultures, the word "cure" can mean many different things. In our Western cultures, it means eradicating or reversing a disease, but in different cultures, for example, a culture from Asia, from the Mediterranean, from Latin countries, from Africa, it can mean many more things.
我是名艺术家, 我使用开源技术的几种形式, 在实际工作中公开信息。 所以我的最佳赌注就是, 从开源技术中获取所有信息, 运用这些信息, 让任何人都能了解我的癌症。 所以我创建了一个网站,叫“La Cura”, 放上我的医疗数据,在线的。 我实在必须窃取这些医疗数据, 我们可以用另一个演讲来讲这方面的事情。 (笑声) 我选择这个词,“La Cura”-- “La Cura”在意大利语中意为“治疗”-- 在不同的文化中, “治疗”可能意味着不同的事情。 在我们西方文化中, 意味着根除或者击退疾病。 而在不同文化中, 比如,来自亚洲的某一种文化, 来自地中海的, 来自拉丁国家的,来自非洲的, 可能意味着更多的事情。
Of course, I was interested in the opinions of doctors and healthcare providers, but I was also interested in the cure of the artist, of the poet, of the designer, of, who knows, the musicians. I was interested in the social cure, I was interested in the psychological cure, I was interested in the spiritual cure, I was interested in the emotional cure, I was interested in any form of cure.
当然,我关注医生的意见, 以及医疗保健机构的意见, 但我也关注艺术家的治疗方法, 以及诗人的, 设计师的, 谁知道呢,音乐家的。 我关注社会性的治疗方法, 关注心理治疗, 关注神灵治疗, 关注情绪治疗, 关注任何形式的治疗。
And, it worked. The La Cura website went viral. I received lots of media attention from Italy and from abroad and I quickly received more than 500,000 contacts -- emails, social networking -- most of them were a suggestion on how to cure my cancer, but more of them were about how to cure myself as a full individual. For example, many thousands of videos, images, pictures, art performances were produced for La Cura. For example, here we see Francesca Fini in her performance. Or, as artist Patrick Lichty has done: He produced a 3D sculpture of my tumor and put it on sale on Thingiverse. Now you can have my cancer, too! (Laughter) Which is a nice thing, if you think about it, we can share our cancer.
并且,它起作用了。 “La Cura”网站病毒式地发展。 我受到意大利及国外的媒体的大量关注, 很快收到了不止50万个的联络, 包括邮件、社交网络, 大多数是建议如果治疗我的癌症, 但是更多的是关于如何治疗我自己, 作为一个完整的个人。 例如,几千个视频、 图像、照片、艺术行为, 为了”La Cura”而产生。 例如,这是弗兰塞卡.菲尼在进行表演。 或者,像艺术家帕特里克.利克提所做的: 他造了我的肿瘤的3D雕塑, 并放在“Thingiverse”上出售。 现在你们也有机会得到我的肿瘤。 (笑声) 如果你们考虑一下的话, 就会发现这是多么美好的事情, 我们能够分享我们的肿瘤。
And this was going on -- scientists, the traditional medicine experts, several researchers, doctors -- all connected with me to give advice. With all this information and support, I was able to form a team of several neurosurgeons, traditional doctors, oncologists, and several hundred volunteers with whom I was able to discuss the information I was receiving, which is very important. And together, we were able to form a strategy for my own cure in many languages, according to many cultures. And the current strategy spans the whole world and thousands of years of human history, which is quite remarkable for me. [Surgery]
并且它继续前进, 科学家们、传统的医疗专家、 一些研究者、医生们, 都与我联系并提供建议。 有了这些信息与支持, 我能够组建一个队伍, 包括一些神经外科医生、 传统医生们、 肿瘤医生们和几百个志愿者, 与他们一起,能够进行讨论 我收到的消息中哪些是重要的。 从而一起决定我的肿瘤的治疗策略, 使用了很多种语言, 来自很多种文化。 而且跨越了整个世界, 以及几千年人类历史, 对我来说是不寻常的。 「外科」
The follow-up MRIs showed, luckily, little to no growth of the cancer. So I was able to take my time and choose. I chose the doctor I wanted to work with, I chose the hospital I wanted to stay in, and in the meanwhile, I was supported by thousands of people, none of whom felt pity for me. Everyone felt like they could take an active role in helping me to get well, and this was the most important part of La Cura.
接下的核磁共振成像显示, 幸运地,肿瘤几乎没有恶化。 所以我能从容不迫并进行选择。 我选择我想合作的医生, 选择我想逗留的医院, 同时,我有数千个支持者, 他们都不觉得我是可怜的。 每个人都让人觉得, 他们能起到积极的作用, 以帮助我好转, 而且,这是"La Cura"最重要的部分。
What are the outcomes? I'm fine, as you can see, pretty fine. (Applause) I had excellent news after the surgery -- I have -- I had a very low-grade glioma, which is a "good" kind of cancer which doesn't grow a lot. I have completely changed my life and my lifestyle. Everything I did was thoughtfully designed to get me engaged.
效果如何呢? 我好了,正如你们所见,非常健康。 (掌声) 我有个大好消息: 手术之后, 我有一个非常微小的神经胶质瘤, 它是良性的, 不会怎么生长。 我已经完全改变了我的生命及生活方式。 我做的每件事情都是精心设计的, 并使我能参与进来。
Up until the very last few minutes of the surgery, which was very intense, a matrix of electrodes was implanted in my brain from this side, to be able to build a functional map of what the brain controls. And right before the operation, we were able to discuss the functional map of my brain with the doctor, to understand which risks I was running into and if there were any I wanted to avoid. Obviously, there were. [Open]
直到手术的最后几分钟, 非常紧张的时刻, 一个矩阵电极植入我的大脑, 从这一侧, 为能够创建一个大脑控制的功能映射图。 在此之前, 我们能同医生讨论我的大脑的功能映射图, 为了知道我遭遇着哪些风险, 以及是否有我想避免的情况。 显然,是有的。 「公开」
And this openness was really the fundamental part of La Cura. Thousands of people shared their stories, their experiences. Doctors got to talk with people they don't usually consult when they think about cancer. I'm a self-founding, continuous state of translation among many different languages, in which science meets emotion and conventional research meets traditional research. [Society]
这个“公开"实际上是「La Cura」的原则。 数千人分享他们的故事, 他们的经历。 医生能够同不常能接触到的人进行交流, 当他们考虑癌症的事情时。 我不断地在亲自进行翻译, 在许多不同的语言之间, 在其中科学遭遇情绪, 常规研究遭遇传统研究。 「社会」
The most important thing of La Cura was to feel like a part of a really engaged and connected society whose wellness really depends on the wellness of all of its components. This global performance is my open-source cure for cancer. And from what I feel, it's a cure for me, but for us all.
”La Cura“的最重要的事情, 是要觉得自己正身处于 一个真正的共同参与及相互联系的社会之中, 这个社会的好取决于它的所有组成部分的好。 这个综合的行动就是我的”肿瘤开源治疗“。 据我所感受到的, 它不是对我个人的治疗, 也是对我们所有人的。
Thank you.
谢谢。
(Applause).
(掌声)