TEDMED 2013
Salvatore Iaconesi: What happened when I open-sourced my brain cancer
萨尔瓦托勒.拉科尼斯: 我开源我的脑癌时发生了什么
Filmed:
Readability: 4.1
1,178,915 views
当艺术家萨尔瓦托勒.拉科尼斯被诊断出脑癌时，他拒绝做一个消极的病人---他指出，是指“等待的人”。于是他偷走了他的脑扫描图像，公布在网上，并邀请了一个全球的共同体投入到同一个“治疗”中。有时意味着医疗建议，有时意味着艺术、音乐、精神支持--来自不止五十万人的。
Salvatore Iaconesi - Open-source engineer and artist
An artist, hacker and interaction designer, Salvatore Iaconesi embarked on a bold open-source project in 2012. Subject: his own brain cancer Full bio
An artist, hacker and interaction designer, Salvatore Iaconesi embarked on a bold open-source project in 2012. Subject: his own brain cancer Full bio
Double-click the English transcript below to play the video.
00:14
This back here was my brain cancer.
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后面这图曾是我的脑癌,
00:19
Isn't it nice?
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酷吧？
00:20
(Laughter)
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（笑声）
00:23
The key phrase is "was,"
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关键词是“曾是”，
00:25
phew.
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咻！~~~
00:27
(Applause)
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（掌声）
00:32
Having brain cancer was really,
as you can imagine,
as you can imagine,
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得了脑癌，正如大家可以想象，
00:36
shocking news for me.
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这消息使我震惊。
00:38
I knew nothing about cancer.
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我那时对癌症一无所知。
00:42
In Western cultures, when you have cancer,
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在西方文化，得了癌症，
00:45
it's as if you disappear in a way.
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意味着在一定程度上如同消失。
00:48
Your life as a complex human being
is replaced by medical data:
is replaced by medical data:
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你多彩的生活被医学数据取代：
00:55
Your images, your exams, your lab values,
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扫描图像、诊断、实验数据、
01:01
a list of medicines.
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药物清单，
01:03
And everyone changes as well.
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而且每个人也变得不同。
01:06
You suddenly become a disease on legs.
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你突然变成一团行走的病菌。
01:09
Doctors start speaking a language
which you don't understand.
which you don't understand.
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医生开始说你听不懂的语言，
01:13
They start pointing their fingers
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他们开始用手指，
01:19
at your body and your images.
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在你的身体和扫描图像上比划。
01:24
People start changing as well
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人们也开始改变，
01:27
because they start dealing
with the disease,
with the disease,
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因为他们开始要和疾病打交道，
01:31
instead of with the human being.
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而不是和人类。
01:33
They say, "What did the doctor say?"
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他们说：“医生怎么说？”，
01:35
before even saying, "Hello."
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甚至先于说“你好”。
01:39
And in the meanwhile,
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与此同时，
01:41
you're left with questions
to which nobody gives an answer.
to which nobody gives an answer.
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你有了许多没人能解答的问题。
01:47
These are the "Can I?" questions:
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这些是“我能？”问题：
01:49
Can I work while I have cancer?
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“我能带着癌症上班吗？”
01:52
Can I study? Can I make love?
Can I be creative?
Can I be creative?
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“我能学习吗？我能做爱吗？
我能有创造力吗？”
我能有创造力吗？”
01:57
And you wonder, "What have I done
to deserve this?"
to deserve this?"
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你想知道：
“我做了什么使我落到这个下场呢？”
“我做了什么使我落到这个下场呢？”
02:01
You wonder, "Can I change something
about my lifestyle?"
about my lifestyle?"
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想知道：“我能改变我的生活方式吗？”
02:05
You wonder, "Can I do something?
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想知道：“我能做什么呢？
02:08
Are there any other options?"
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有别的选择吗？”
02:12
And, obviously, doctors are
the good guys in all these scenarios,
the good guys in all these scenarios,
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显然，医生在这些情况下都是好人，
02:17
because they are very professional
and dedicated to curing you.
and dedicated to curing you.
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因为他们非常专业且用心给你治疗。
02:23
But they also are very used
to having to deal with patients,
to having to deal with patients,
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但是他们经常必须与很多病人打交道，
02:29
so I'd say that they sometimes
lose the idea that this is torture for you
lose the idea that this is torture for you
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我要说,
他们有时会忘了这对你是一种折磨，
他们有时会忘了这对你是一种折磨，
02:36
and that you become,
literally, a patient --
literally, a patient --
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你就成了，字面上，”病人“——
02:41
"patient" means "the one who waits."
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这里“病人”是指“耐心等候的人”。
02:43
(Laughter)
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（笑声）
02:44
Things are changing, but classically,
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事态一直在改变，但经典的是，
02:49
they tend to not engage you in any way
to learn about your condition,
to learn about your condition,
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他们绝不打算让你参与了解病情，
02:54
to get your friends and family engaged,
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而是让你的朋友或家人参与；
02:58
or showing you ways
in which you can change your lifestyle
in which you can change your lifestyle
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也不告诉你任何改变生活方式的方法，
03:02
to minimize the risks
of what you're going through.
of what you're going through.
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来减少你正在经历的风险。
03:06
But instead, you're forced there to wait
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取而代之的是你被迫等待，
03:09
in the hands of a series
of very professional strangers.
of very professional strangers.
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受制于一群非常专业的陌生人。
03:16
While I was in the hospital,
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当我在医院的时候
03:18
I asked for a printed-out
picture of my cancer
picture of my cancer
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我要了一张我的肿瘤的图像，
03:22
and I spoke with it.
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并且与它说话。
03:25
It was really hard to obtain,
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这很难弄得到，
03:27
because it's not common practice
to ask for a picture of your own cancer.
to ask for a picture of your own cancer.
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因为去要自己的肿瘤的图像，
的确不是寻常的举动。
的确不是寻常的举动。
03:32
I talked to it and I said,
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我跟它交流，说：
03:34
"Okay, cancer,
you're not all there is to me.
you're not all there is to me.
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“好吧，肿瘤兄，对我来说你不是全部，
03:38
There's more to me.
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我还有更多。
03:40
A cure, whichever it is, will have
to deal with the whole of me."
to deal with the whole of me."
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（不公平的是，)不管是哪种治疗，
都会牵扯到整个我。”
都会牵扯到整个我。”
03:47
And so, the next day, I left the hospital
against medical advice.
against medical advice.
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所以，第二天，
我不顾医生的建议就离开了医院。
我不顾医生的建议就离开了医院。
03:53
I was determined to change
my relationship with the cancer
my relationship with the cancer
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我下定决心要改变我与肿瘤的关系，
03:57
and I was determined
to learn more about my cancer
to learn more about my cancer
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并决心更多地了解我的肿瘤，
04:00
before doing anything
as drastic as a surgery.
as drastic as a surgery.
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在做外科手术这样猛烈的事情之前。
04:06
I'm an artist, I use several forms
of open-source technologies
of open-source technologies
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我是名艺术家，
我使用开源技术的几种形式，
我使用开源技术的几种形式，
04:12
and open information in my practice.
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在实际工作中公开信息。
04:15
So my best bet was to get it all
out there, get the information out there,
out there, get the information out there,
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所以我的最佳赌注就是，
从开源技术中获取所有信息，
从开源技术中获取所有信息，
04:21
and use it so that it could be
accessed by anyone.
accessed by anyone.
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运用这些信息，
让任何人都能了解我的癌症。
让任何人都能了解我的癌症。
04:28
So I created a website,
which is called La Cura,
which is called La Cura,
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所以我创建了一个网站，叫“La Cura”，
04:32
on which I put my medical data, online.
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放上我的医疗数据，在线的。
04:35
I actually had to hack it
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我实在必须窃取这些医疗数据，
04:37
and that's a thing which we
can talk about in another speech.
can talk about in another speech.
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我们可以用另一个演讲来讲这方面的事情。
04:41
(Laughter)
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（笑声）
04:42
I chose this word, La Cura --
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我选择这个词，“La Cura”--
04:45
La Cura in Italian means "the cure" --
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“La Cura”在意大利语中意为“治疗”--
04:47
because in many different cultures,
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在不同的文化中，
04:50
the word "cure" can mean
many different things.
many different things.
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“治疗”可能意味着不同的事情。
04:55
In our Western cultures,
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在我们西方文化中，
04:56
it means eradicating
or reversing a disease,
or reversing a disease,
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意味着根除或者击退疾病。
05:01
but in different cultures,
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而在不同文化中，
05:02
for example, a culture from Asia,
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比如，来自亚洲的某一种文化，
05:06
from the Mediterranean,
from Latin countries, from Africa,
from Latin countries, from Africa,
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来自地中海的，
来自拉丁国家的，来自非洲的，
来自拉丁国家的，来自非洲的，
05:10
it can mean many more things.
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可能意味着更多的事情。
05:12
Of course, I was interested
in the opinions of doctors
in the opinions of doctors
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当然，我关注医生的意见，
05:18
and healthcare providers,
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以及医疗保健机构的意见，
05:20
but I was also interested in
the cure of the artist, of the poet,
the cure of the artist, of the poet,
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但我也关注艺术家的治疗方法，
以及诗人的，
以及诗人的，
05:26
of the designer,
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设计师的，
05:28
of, who knows, the musicians.
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谁知道呢，音乐家的。
05:32
I was interested in the social cure,
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我关注社会性的治疗方法，
05:35
I was interested in
the psychological cure,
the psychological cure,
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关注心理治疗，
05:38
I was interested in the spiritual cure,
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关注神灵治疗，
05:41
I was interested in the emotional cure,
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关注情绪治疗，
05:44
I was interested in any form of cure.
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关注任何形式的治疗。
05:48
And, it worked.
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并且，它起作用了。
05:52
The La Cura website went viral.
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“La Cura”网站病毒式地发展。
05:55
I received lots of media attention
from Italy and from abroad
from Italy and from abroad
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我受到意大利及国外的媒体的大量关注，
06:00
and I quickly received
more than 500,000 contacts --
more than 500,000 contacts --
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很快收到了不止50万个的联络，
06:06
emails, social networking --
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包括邮件、社交网络，
06:08
most of them were a suggestion
on how to cure my cancer,
on how to cure my cancer,
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大多数是建议如果治疗我的癌症，
06:11
but more of them were about
how to cure myself
how to cure myself
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但是更多的是关于如何治疗我自己，
06:15
as a full individual.
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作为一个完整的个人。
06:18
For example, many thousands of videos,
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例如，几千个视频、
06:22
images, pictures, art performances
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图像、照片、艺术行为，
06:26
were produced for La Cura.
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为了”La Cura”而产生。
06:28
For example, here we see
Francesca Fini in her performance.
Francesca Fini in her performance.
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例如，这是弗兰塞卡.菲尼在进行表演。
06:33
Or, as artist Patrick Lichty has done:
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或者，像艺术家帕特里克.利克提所做的：
06:37
He produced a 3D sculpture of my tumor
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他造了我的肿瘤的3D雕塑，
06:42
and put it on sale on Thingiverse.
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并放在“Thingiverse”上出售。
06:44
Now you can have my cancer, too!
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现在你们也有机会得到我的肿瘤。
06:47
(Laughter)
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（笑声）
06:49
Which is a nice thing,
if you think about it,
if you think about it,
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如果你们考虑一下的话，
就会发现这是多么美好的事情，
就会发现这是多么美好的事情，
06:52
we can share our cancer.
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我们能够分享我们的肿瘤。
06:56
And this was going on --
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并且它继续前进，
06:58
scientists, the traditional
medicine experts,
medicine experts,
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科学家们、传统的医疗专家、
07:02
several researchers, doctors --
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一些研究者、医生们，
07:03
all connected with me to give advice.
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都与我联系并提供建议。
07:06
With all this information and support,
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有了这些信息与支持，
07:08
I was able to form a team
of several neurosurgeons,
of several neurosurgeons,
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我能够组建一个队伍，
包括一些神经外科医生、
包括一些神经外科医生、
07:14
traditional doctors,
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传统医生们、
07:16
oncologists, and several
hundred volunteers
hundred volunteers
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肿瘤医生们和几百个志愿者，
07:23
with whom I was able to discuss
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与他们一起，能够进行讨论
07:26
the information I was receiving,
which is very important.
which is very important.
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我收到的消息中哪些是重要的。
07:31
And together, we were able to form
a strategy for my own cure
a strategy for my own cure
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从而一起决定我的肿瘤的治疗策略，
07:38
in many languages,
according to many cultures.
according to many cultures.
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使用了很多种语言，
来自很多种文化。
来自很多种文化。
07:41
And the current strategy
spans the whole world
spans the whole world
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而且跨越了整个世界，
07:45
and thousands of years of human history,
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以及几千年人类历史，
07:47
which is quite remarkable for me.
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对我来说是不寻常的。
07:49
[Surgery]
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「外科」
07:51
The follow-up MRIs showed, luckily,
little to no growth of the cancer.
little to no growth of the cancer.
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接下的核磁共振成像显示，
幸运地，肿瘤几乎没有恶化。
幸运地，肿瘤几乎没有恶化。
07:57
So I was able to take my time and choose.
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所以我能从容不迫并进行选择。
08:00
I chose the doctor I wanted to work with,
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我选择我想合作的医生，
08:04
I chose the hospital I wanted to stay in,
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选择我想逗留的医院，
08:06
and in the meanwhile, I was supported
by thousands of people,
by thousands of people,
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同时，我有数千个支持者，
08:10
none of whom felt pity for me.
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他们都不觉得我是可怜的。
08:13
Everyone felt like they could
take an active role
take an active role
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每个人都让人觉得，
他们能起到积极的作用，
他们能起到积极的作用，
08:19
in helping me to get well,
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以帮助我好转，
08:21
and this was the most important
part of La Cura.
part of La Cura.
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而且，这是"La Cura"最重要的部分。
08:26
What are the outcomes?
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效果如何呢？
08:28
I'm fine, as you can see, pretty fine.
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我好了，正如你们所见，非常健康。
08:30
(Applause)
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（掌声）
08:35
I have excellent news:
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我有个大好消息：
08:38
After the surgery --
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手术之后，
08:39
I have -- I had a very low-grade glioma,
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我有一个非常微小的神经胶质瘤，
08:45
which is a "good" kind of cancer
which doesn't grow a lot.
which doesn't grow a lot.
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它是良性的，
不会怎么生长。
不会怎么生长。
08:49
I have completely changed
my life and my lifestyle.
my life and my lifestyle.
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我已经完全改变了我的生命及生活方式。
08:54
Everything I did was thoughtfully
designed to get me engaged.
designed to get me engaged.
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我做的每件事情都是精心设计的，
并使我能参与进来。
并使我能参与进来。
09:00
Up until the very last few
minutes of the surgery,
minutes of the surgery,
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直到手术的最后几分钟，
09:04
which was very intense,
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非常紧张的时刻，
09:06
a matrix of electrodes
was implanted in my brain
was implanted in my brain
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一个矩阵电极植入我的大脑，
09:10
from this side,
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从这一侧，
09:12
to be able to build a functional map
of what the brain controls.
of what the brain controls.
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为能够创建一个大脑控制的功能映射图。
09:17
And right before the operation,
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在此之前，
09:20
we were able to discuss
the functional map of my brain
the functional map of my brain
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我们能同医生讨论我的大脑的功能映射图，
09:27
with the doctor, to understand
which risks I was running into
which risks I was running into
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为了知道我遭遇着哪些风险，
09:32
and if there were any I wanted to avoid.
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以及是否有我想避免的情况。
09:36
Obviously, there were.
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显然，是有的。
09:38
[Open]
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「公开」
09:39
And this openness was really
the fundamental part of La Cura.
the fundamental part of La Cura.
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这个“公开"实际上是「La Cura」的原则。
09:44
Thousands of people shared
their stories, their experiences.
their stories, their experiences.
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数千人分享他们的故事，
他们的经历。
他们的经历。
09:49
Doctors got to talk with people
they don't usually consult
they don't usually consult
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医生能够同不常能接触到的人进行交流，
09:54
when they think about cancer.
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当他们考虑癌症的事情时。
09:59
I'm a self-founding,
continuous state of translation
continuous state of translation
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我不断地在亲自进行翻译，
10:04
among many different languages,
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在许多不同的语言之间，
10:06
in which science meets emotion
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在其中科学遭遇情绪，
10:10
and conventional research
meets traditional research.
meets traditional research.
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常规研究遭遇传统研究。
10:14
[Society]
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「社会」
10:16
The most important thing of La Cura
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”La Cura“的最重要的事情，
10:21
was to feel like a part
of a really engaged and connected society
of a really engaged and connected society
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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，
一个真正的共同参与及相互联系的社会之中，
10:28
whose wellness really depends
on the wellness of all of its components.
on the wellness of all of its components.
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这个社会的好取决于它的所有组成部分的好。
10:36
This global performance
is my open-source cure for cancer.
is my open-source cure for cancer.
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这个综合的行动就是我的”肿瘤开源治疗“。
10:41
And from what I feel,
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据我所感受到的，
10:43
it's a cure for me, but for us all.
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它不是对我个人的治疗，
也是对我们所有人的。
也是对我们所有人的。
10:46
Thank you.
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谢谢。
10:47
(Applause).
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（掌声）
ABOUT THE SPEAKER
Salvatore Iaconesi - Open-source engineer and artistAn artist, hacker and interaction designer, Salvatore Iaconesi embarked on a bold open-source project in 2012. Subject: his own brain cancer
Why you should listen
"I have a brain cancer.” Data artist and TED Fellow Salvatore Iaconesi posted these words on his website September 10, 2012. He wrote:
Yesterday I went to get my digital medical records: I have to show them to many doctors.
Sadly they were in a closed, proprietary format and, thus, I could not open them using my computer, or send them in this format to all the people who could have saved my life.
I cracked them.
I opened them and converted the contents into open formats, so that I could share them with everyone.
In cracking his scans, X-rays, lab notes and charts, and opening them to the world, he laid out a model for open-sourcing not only a support group, but a whole cure (he calls it, in his native Italian, "La cura"). And he means a cure of any kind: "There are cures for the body, for spirit, for communication." He had brain surgery in February 2013, "and everything went perfectly." Now he is working on sharing the benefits of his experience.
More profile about the speakerYesterday I went to get my digital medical records: I have to show them to many doctors.
Sadly they were in a closed, proprietary format and, thus, I could not open them using my computer, or send them in this format to all the people who could have saved my life.
I cracked them.
I opened them and converted the contents into open formats, so that I could share them with everyone.
In cracking his scans, X-rays, lab notes and charts, and opening them to the world, he laid out a model for open-sourcing not only a support group, but a whole cure (he calls it, in his native Italian, "La cura"). And he means a cure of any kind: "There are cures for the body, for spirit, for communication." He had brain surgery in February 2013, "and everything went perfectly." Now he is working on sharing the benefits of his experience.
Salvatore Iaconesi | Speaker | TED.com