ABOUT THE SPEAKER
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

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 speaker
Salvatore Iaconesi | Speaker | TED.com
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:
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。
- 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

Double-click the English transcript below to play the video.

00:14
This back here was my brain cancer癌症.
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后面这图曾是我的脑癌,
00:19
Isn't it nice不错?
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酷吧?
00:20
(Laughter笑声)
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(笑声)
00:23
The key phrase短语 is "was,"
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关键词是“曾是”,
00:25
phew表示不快.
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咻!~~~
00:27
(Applause掌声)
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(掌声)
00:32
Having brain cancer癌症 was really,
as you can imagine想像,
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得了脑癌,正如大家可以想象,
00:36
shocking触目惊心 news新闻 for me.
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这消息使我震惊。
00:38
I knew知道 nothing about cancer癌症.
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我那时对癌症一无所知。
00:42
In Western西 cultures文化, when you have cancer癌症,
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在西方文化,得了癌症,
00:45
it's as if you disappear消失 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复杂 human人的 being存在
is replaced更换 by medical data数据:
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你多彩的生活被医学数据取代:
00:55
Your images图片, your exams考试, your lab实验室 values,
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扫描图像、诊断、实验数据、
01:01
a list名单 of medicines药品.
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药物清单,
01:03
And everyone大家 changes变化 as well.
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而且每个人也变得不同。
01:06
You suddenly突然 become成为 a disease疾病 on legs.
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你突然变成一团行走的病菌。
01:09
Doctors医生 start开始 speaking请讲 a language语言
which哪一个 you don't understand理解.
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医生开始说你听不懂的语言,
01:13
They start开始 pointing指点 their fingers手指
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他们开始用手指,
01:19
at your body身体 and your images图片.
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在你的身体和扫描图像上比划。
01:24
People start开始 changing改变 as well
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人们也开始改变,
01:27
because they start开始 dealing交易
with the disease疾病,
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因为他们开始要和疾病打交道,
01:31
instead代替 of with the human人的 being存在.
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而不是和人类。
01:33
They say, "What did the doctor医生 say?"
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他们说:“医生怎么说?”,
01:35
before even saying, "Hello你好."
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甚至先于说“你好”。
01:39
And in the meanwhile与此同时,
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与此同时,
01:41
you're left with questions问题
to which哪一个 nobody没有人 gives an answer回答.
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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问题:
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这些是“我能?”问题:
01:49
Can I work while I have cancer癌症?
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“我能带着癌症上班吗?”
01:52
Can I study研究? Can I make love?
Can I be creative创作的?
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“我能学习吗?我能做爱吗?
我能有创造力吗?”
01:57
And you wonder奇迹, "What have I doneDONE
to deserve值得 this?"
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你想知道:
“我做了什么使我落到这个下场呢?”
02:01
You wonder奇迹, "Can I change更改 something
about my lifestyle生活方式?"
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想知道:“我能改变我的生活方式吗?”
02:05
You wonder奇迹, "Can I do something?
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想知道:“我能做什么呢?
02:08
Are there any other options选项?"
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有别的选择吗?”
02:12
And, obviously明显, doctors医生 are
the good guys in all these scenarios场景,
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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专业的
and dedicated专用 to curing养护 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合同 with patients耐心,
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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有时
lose失去 the idea理念 that this is torture拷打 for you
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我要说,
他们有时会忘了这对你是一种折磨,
02:36
and that you become成为,
literally按照字面, a patient患者 --
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你就成了,字面上,”病人“——
02:41
"patient患者" means手段 "the one who waits等待."
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这里“病人”是指“耐心等候的人”。
02:43
(Laughter笑声)
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(笑声)
02:44
Things are changing改变, but classically经典,
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事态一直在改变,但经典的是,
02:49
they tend趋向 to not engage从事 you in any way
to learn学习 about your condition条件,
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他们绝不打算让你参与了解病情,
02:54
to get your friends朋友 and family家庭 engaged订婚,
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而是让你的朋友或家人参与;
02:58
or showing展示 you ways方法
in which哪一个 you can change更改 your lifestyle生活方式
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也不告诉你任何改变生活方式的方法,
03:02
to minimize最小化 the risks风险
of what you're going through通过.
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来减少你正在经历的风险。
03:06
But instead代替, you're forced被迫 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系列
of very professional专业的 strangers陌生人.
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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醫院,
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当我在医院的时候
03:18
I asked for a printed-out打印出来
picture图片 of my cancer癌症
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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获得,
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这很难弄得到,
03:27
because it's not common共同 practice实践
to ask for a picture图片 of your own拥有 cancer癌症.
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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。
03:32
I talked to it and I said,
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我跟它交流,说:
03:34
"Okay, cancer癌症,
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治愈, whichever任何 it is, will have
to deal合同 with the whole整个 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。”
03:47
And so, the next下一个 day, I left the hospital醫院
against反对 medical advice忠告.
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所以,第二天,
我不顾医生的建议就离开了医院。
03:53
I was determined决心 to change更改
my relationship关系 with the cancer癌症
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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决心
to learn学习 more about my cancer癌症
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并决心更多地了解我的肿瘤,
04:00
before doing anything
as drastic激烈 as a surgery手术.
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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艺术家, I use several一些 forms形式
of open-source开源 technologies技术
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我是名艺术家,
我使用开源技术的几种形式,
04:12
and open打开 information信息 in my practice实践.
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在实际工作中公开信息。
04:15
So my best最好 bet赌注 was to get it all
out there, get the information信息 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,
04:21
and use it so that it could be
accessed访问 by anyone任何人.
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运用这些信息,
让任何人都能了解我的癌症。
04:28
So I created创建 a website网站,
which哪一个 is called La Cura库拉,
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所以我创建了一个网站,叫“La Cura”,
04:32
on which哪一个 I put my medical data数据, online线上.
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放上我的医疗数据,在线的。
04:35
I actually其实 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哪一个 we
can talk about in another另一个 speech言语.
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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笑声)
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(笑声)
04:42
I chose选择 this word, La Cura库拉 --
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我选择这个词,“La Cura”--
04:45
La Cura库拉 in Italian意大利 means手段 "the cure治愈" --
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“La Cura”在意大利语中意为“治疗”--
04:47
because in many许多 different不同 cultures文化,
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在不同的文化中,
04:50
the word "cure治愈" can mean
many许多 different不同 things.
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“治疗”可能意味着不同的事情。
04:55
In our Western西 cultures文化,
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在我们西方文化中,
04:56
it means手段 eradicating根除
or reversing倒车 a disease疾病,
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意味着根除或者击退疾病。
05:01
but in different不同 cultures文化,
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而在不同文化中,
05:02
for example, a culture文化 from Asia亚洲,
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比如,来自亚洲的某一种文化,
05:06
from the Mediterranean地中海,
from Latin拉丁 countries国家, from Africa非洲,
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来自地中海的,
来自拉丁国家的,来自非洲的,
05:10
it can mean many许多 more things.
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可能意味着更多的事情。
05:12
Of course课程, I was interested有兴趣
in the opinions意见 of doctors医生
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当然,我关注医生的意见,
05:18
and healthcare卫生保健 providers供应商,
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以及医疗保健机构的意见,
05:20
but I was also interested有兴趣 in
the cure治愈 of the artist艺术家, of the poet诗人,
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但我也关注艺术家的治疗方法,
以及诗人的,
05:26
of the designer设计师,
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设计师的,
05:28
of, who knows知道, the musicians音乐家.
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谁知道呢,音乐家的。
05:32
I was interested有兴趣 in the social社会 cure治愈,
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我关注社会性的治疗方法,
05:35
I was interested有兴趣 in
the psychological心理 cure治愈,
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关注心理治疗,
05:38
I was interested有兴趣 in the spiritual精神 cure治愈,
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关注神灵治疗,
05:41
I was interested有兴趣 in the emotional情绪化 cure治愈,
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关注情绪治疗,
05:44
I was interested有兴趣 in any form形成 of cure治愈.
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关注任何形式的治疗。
05:48
And, it worked工作.
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并且,它起作用了。
05:52
The La Cura库拉 website网站 went viral病毒.
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“La Cura”网站病毒式地发展。
05:55
I received收到 lots of media媒体 attention注意
from Italy意大利 and from abroad国外
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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很快 received收到
more than 500,000 contacts往来 --
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很快收到了不止50万个的联络,
06:06
emails电子邮件, social社会 networking联网 --
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包括邮件、社交网络,
06:08
most of them were a suggestion建议
on how to cure治愈 my cancer癌症,
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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治愈 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充分 individual个人.
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作为一个完整的个人。
06:18
For example, many许多 thousands数千 of videos视频,
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例如,几千个视频、
06:22
images图片, pictures图片, art艺术 performances演出
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图像、照片、艺术行为,
06:26
were produced生成 for La Cura库拉.
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为了”La Cura”而产生。
06:28
For example, here we see
Francesca弗朗西斯 Fini菲尼 in her performance性能.
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例如,这是弗兰塞卡.菲尼在进行表演。
06:33
Or, as artist艺术家 Patrick帕特里克 LichtyLichty has doneDONE:
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或者,像艺术家帕特里克.利克提所做的:
06:37
He produced生成 a 3D sculpture雕塑 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拍卖 on ThingiverseThingiverse.
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并放在“Thingiverse”上出售。
06:44
Now you can have my cancer癌症, too!
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现在你们也有机会得到我的肿瘤。
06:47
(Laughter笑声)
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(笑声)
06:49
Which哪一个 is a nice不错 thing,
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,
06:52
we can share分享 our cancer癌症.
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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科学家们, the traditional传统
medicine医学 experts专家,
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科学家们、传统的医疗专家、
07:02
several一些 researchers研究人员, doctors医生 --
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一些研究者、医生们,
07:03
all connected连接的 with me to give advice忠告.
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都与我联系并提供建议。
07:06
With all this information信息 and support支持,
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有了这些信息与支持,
07:08
I was able能够 to form形成 a team球队
of several一些 neurosurgeons神经外科医生,
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我能够组建一个队伍,
包括一些神经外科医生、
07:14
traditional传统 doctors医生,
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传统医生们、
07:16
oncologists肿瘤科医生, and several一些
hundred volunteers志愿者
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肿瘤医生们和几百个志愿者,
07:23
with whom I was able能够 to discuss讨论
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与他们一起,能够进行讨论
07:26
the information信息 I was receiving接收,
which哪一个 is very important重要.
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我收到的消息中哪些是重要的。
07:31
And together一起, we were able能够 to form形成
a strategy战略 for my own拥有 cure治愈
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从而一起决定我的肿瘤的治疗策略,
07:38
in many许多 languages语言,
according根据 to many许多 cultures文化.
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使用了很多种语言,
来自很多种文化。
07:41
And the current当前 strategy战略
spans跨度 the whole整个 world世界
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而且跨越了整个世界,
07:45
and thousands数千 of years年份 of human人的 history历史,
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以及几千年人类历史,
07:47
which哪一个 is quite相当 remarkable卓越 for me.
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对我来说是不寻常的。
07:49
[Surgery手术]
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「外科」
07:51
The follow-up跟进 MRIs核磁共振成像 showed显示, luckily,
little to no growth发展 of the cancer癌症.
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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。
07:57
So I was able能够 to take my time and choose选择.
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所以我能从容不迫并进行选择。
08:00
I chose选择 the doctor医生 I wanted to work with,
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我选择我想合作的医生,
08:04
I chose选择 the hospital醫院 I wanted to stay in,
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选择我想逗留的医院,
08:06
and in the meanwhile与此同时, I was supported支持的
by thousands数千 of people,
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同时,我有数千个支持者,
08:10
none没有 of whom felt pity可怜 for me.
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他们都不觉得我是可怜的。
08:13
Everyone大家 felt like they could
take an active活性 role角色
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每个人都让人觉得,
他们能起到积极的作用,
08:19
in helping帮助 me to get well,
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以帮助我好转,
08:21
and this was the most important重要
part部分 of La Cura库拉.
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而且,这是"La Cura"最重要的部分。
08:26
What are the outcomes结果?
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效果如何呢?
08:28
I'm fine, as you can see, pretty漂亮 fine.
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我好了,正如你们所见,非常健康。
08:30
(Applause掌声)
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(掌声)
08:35
I have excellent优秀 news新闻:
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我有个大好消息:
08:38
After the surgery手术 --
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手术之后,
08:39
I have -- I had a very low-grade低等级 glioma神经胶质瘤,
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我有一个非常微小的神经胶质瘤,
08:45
which哪一个 is a "good" kind of cancer癌症
which哪一个 doesn't grow增长 a lot.
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它是良性的,
不会怎么生长。
08:49
I have completely全然 changed
my life and my lifestyle生活方式.
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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沉思地
designed设计 to get me engaged订婚.
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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。
09:00
Up until直到 the very last few少数
minutes分钟 of the surgery手术,
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直到手术的最后几分钟,
09:04
which哪一个 was very intense激烈,
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非常紧张的时刻,
09:06
a matrix矩阵 of electrodes电极
was implanted植入 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能够 to build建立 a functional实用 map地图
of what the brain controls控制.
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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手术,
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在此之前,
09:20
we were able能够 to discuss讨论
the functional实用 map地图 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医生, to understand理解
which哪一个 risks风险 I was running赛跑 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避免.
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以及是否有我想避免的情况。
09:36
Obviously明显, there were.
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显然,是有的。
09:38
[Open打开]
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「公开」
09:39
And this openness透明度 was really
the fundamental基本的 part部分 of La Cura库拉.
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这个“公开"实际上是「La Cura」的原则。
09:44
Thousands成千上万 of people shared共享
their stories故事, their experiences经验.
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数千人分享他们的故事,
他们的经历。
09:49
Doctors医生 got to talk with people
they don't usually平时 consult请教
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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癌症.
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当他们考虑癌症的事情时。
09:59
I'm a self-founding自成立,
continuous连续 state of translation翻译
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我不断地在亲自进行翻译,
10:04
among其中 many许多 different不同 languages语言,
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在许多不同的语言之间,
10:06
in which哪一个 science科学 meets符合 emotion情感
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在其中科学遭遇情绪,
10:10
and conventional常规 research研究
meets符合 traditional传统 research研究.
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常规研究遭遇传统研究。
10:14
[Society社会]
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「社会」
10:16
The most important重要 thing of La Cura库拉
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”La Cura“的最重要的事情,
10:21
was to feel like a part部分
of a really engaged订婚 and connected连接的 society社会
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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,
10:28
whose谁的 wellness健康 really depends依靠
on the wellness健康 of all of its components组件.
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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全球 performance性能
is my open-source开源 cure治愈 for cancer癌症.
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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治愈 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。
10:46
Thank you.
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谢谢。
10:47
(Applause掌声).
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(掌声)
Translated by Shoudong He
Reviewed by Yuanqing Edberg

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ABOUT THE SPEAKER
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

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 speaker
Salvatore Iaconesi | Speaker | TED.com