TEDMED 2013
Salvatore Iaconesi: What happened when I open-sourced my brain cancer
Salvatore Iaconesi: 我在網上開放自己的腦癌資料後，發生了什麼事？
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Salvatore Iaconesi 是一名藝術家。當醫生確診他有腦癌後，他拒絕做一個任人擺佈的病人，認為病人只是一個等待的病人。於是他把自己的腦部掃描，放在網上開放給所有人，其後獲得來自全球的網民選中，一切研究醫治腦癌的療方。這批超過50萬的網民，有時提供醫學意見，有時提供藝術丶音樂，甚至情緒上的支援。
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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我的腦惡性腫瘤以前就在這
00:19
Isn't it nice?
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漂不漂亮？
00:20
(Laughter)
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（笑聲）
00:23
The key phrase is "was,"
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最關鍵的詞語是＂以前＂
00:25
phew.
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唷！
00:27
(Applause)
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（鼓掌聲）
00:32
Having brain cancer was really,
as you can imagine,
as you can imagine,
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你可以想像得到 當我知道患腦癌時
00:36
shocking news for me.
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真是非常震驚
00:38
I knew nothing about cancer.
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我對癌症一無所知
00:42
In Western cultures, when you have cancer,
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生活在西方文化 如果你得了癌症
00:45
it's as if you disappear in a way.
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便好像失去自己
00:48
Your life as a complex human being
is replaced by medical data:
is replaced by medical data:
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一個複雜的人 卻被醫療數據取代：
00:55
Your images, your exams, your lab values,
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你的影象 檢查報告 化驗結果
01:01
a list of medicines.
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和一連串的藥物清單
01:03
And everyone changes as well.
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所有人都變了
01:06
You suddenly become a disease on legs.
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你忽然變成一個有腳的疾病
01:09
Doctors start speaking a language
which you don't understand.
which you don't understand.
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醫生漸漸講一些難懂的語言
01:13
They start pointing their fingers
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開始指著
01:19
at your body and your images.
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你的身體和圖像
01:24
People start changing as well
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其他人也變得陌生
01:27
because they start dealing
with the disease,
with the disease,
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他們只會把你當成疾病來應付
01:31
instead of with the human being.
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而不是對待一個人
01:33
They say, "What did the doctor say?"
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他們未跟你說聲好前
01:35
before even saying, "Hello."
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只會問：醫生説了什麼？
01:39
And in the meanwhile,
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當時我有很多疑問
01:41
you're left with questions
to which nobody gives an answer.
to which nobody gives an answer.
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但是沒有人回答我
01:47
These are the "Can I?" questions:
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這些都是＂可否＂的問題
01:49
Can I work while I have cancer?
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我有癌症 可否上班？
01:52
Can I study? Can I make love?
Can I be creative?
Can I be creative?
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可否讀書？可否做愛？可否創作？
01:57
And you wonder, "What have I done
to deserve this?"
to deserve this?"
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那時覺得不解
＂我做了什麼得到這樣的對待？＂
＂我做了什麼得到這樣的對待？＂
02:01
You wonder, "Can I change something
about my lifestyle?"
about my lifestyle?"
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＂可否改變自己的生活方式？＂
02:05
You wonder, "Can I do something?
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＂我可否做點什麼？＂
02:08
Are there any other options?"
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＂有沒有其他選擇？＂
02:12
And, obviously, doctors are
the good guys in all these scenarios,
the good guys in all these scenarios,
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很明顯 醫生在這種環境 是最得人心
02:17
because they are very professional
and dedicated to curing you.
and dedicated to curing you.
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因為他們非常專業 而且盡心醫病
02:23
But they also are very used
to having to deal with patients,
to having to deal with patients,
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但是醫生照顧病人 實在太過熟練
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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有時忘記了這樣治療 只會折磨你
02:36
and that you become,
literally, a patient --
literally, a patient --
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你變成字面上 病人的稱呼
02:41
"patient" means "the one who waits."
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其實 等如＂一個等待的人＂
02:43
(Laughter)
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（笑聲）
02:44
Things are changing, but classically,
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每件事不停在變 但方式守舊
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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醫生不會讓你知道病情
02:54
to get your friends and family engaged,
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只讓親朋戚友商量病情
02:58
or showing you ways
in which you can change your lifestyle
in which you can change your lifestyle
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也不會教你如何改善生活方式
03:02
to minimize the risks
of what you're going through.
of what you're going through.
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減低疾病帶來的風險
03:06
But instead, you're forced there to wait
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反而要我在那裡呆等
03:09
in the hands of a series
of very professional strangers.
of very professional strangers.
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任由那幾位陌生的大國手決定
03:16
While I was in the hospital,
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我住院時
03:18
I asked for a printed-out
picture of my cancer
picture of my cancer
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要求醫院給我一張自己腫瘤的圖片
03:22
and I spoke with it.
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好讓我跟腫瘤對話
03:25
It was really hard to obtain,
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這是很難辦到的
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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因為醫院通常不會允許病人這樣做
03:32
I talked to it and I said,
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我跟這圖片說：
03:34
"Okay, cancer,
you're not all there is to me.
you're not all there is to me.
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＂腫瘤 我不只剩得你
03:38
There's more to me.
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我還擁有很多東西
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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無論什麼方法 也要待我如完整的人
03:47
And so, the next day, I left the hospital
against medical advice.
against medical advice.
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第二日我不理他們的勸告 離開醫院
03:53
I was determined to change
my relationship with the cancer
my relationship with the cancer
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決心要改變我跟癌症的關係
03:57
and I was determined
to learn more about my cancer
to learn more about my cancer
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要做重要的決定前 例如動手術
04:00
before doing anything
as drastic as a surgery.
as drastic as a surgery.
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決心要先多了解自己的腫瘤
04:06
I'm an artist, I use several forms
of open-source technologies
of open-source technologies
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我從事藝術工作 因此可以在制作室
04:12
and open information in my practice.
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利用多種的網上共享技術和資料
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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這是我最好的辦法 從那
04:21
and use it so that it could be
accessed by anyone.
accessed by anyone.
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跟著用來研究 任何人也可以享用
04:28
So I created a website,
which is called La Cura,
which is called La Cura,
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我建立了一個網站 叫做La Cura
04:32
on which I put my medical data, online.
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把自己所有醫療數據 放上網
04:35
I actually had to hack it
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我其實入侵了那個網站
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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這個話題 我們留待下次演講再說
04:41
(Laughter)
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（笑聲）
04:42
I chose this word, La Cura --
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我決定用La Cura 這個名字
04:45
La Cura in Italian means "the cure" --
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它的意大利語意思是＂cure＂
04:47
because in many different cultures,
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由於不同的文化
04:50
the word "cure" can mean
many different things.
many different things.
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＂cure＂可以有不同的解釋
04:55
In our Western cultures,
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在我們的西方文化
04:56
it means eradicating
or reversing a disease,
or reversing a disease,
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它表示根絕或打敗疾病
05:01
but in different cultures,
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但在不同的文化
05:02
for example, a culture from Asia,
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例如文化源自亞洲
05:06
from the Mediterranean,
from Latin countries, from Africa,
from Latin countries, from Africa,
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地中海 拉丁美洲 和非洲
05:10
it can mean many more things.
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它有很多層意思
05:12
Of course, I was interested
in the opinions of doctors
in the opinions of doctors
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當然 我重視醫生
05:18
and healthcare providers,
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保健人員的意見
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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但我也在意藝術家 詩人
05:26
of the designer,
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設計師的療方
05:28
of, who knows, the musicians.
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誰知道 可能是音樂家的良方
05:32
I was interested in the social cure,
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我對社交療法有興趣
05:35
I was interested in
the psychological cure,
the psychological cure,
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對心理學療法有興趣
05:38
I was interested in the spiritual cure,
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對心靈療法有興趣
05:41
I was interested in the emotional cure,
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也對情緒療法有興趣
05:44
I was interested in any form of cure.
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幾乎都留意所有療法
05:48
And, it worked.
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最後果然有效
05:52
The La Cura website went viral.
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La Cura 網站變得非常受歡迎
05:55
I received lots of media attention
from Italy and from abroad
from Italy and from abroad
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獲得很多意大利和海外媒體的注意
06:00
and I quickly received
more than 500,000 contacts --
more than 500,000 contacts --
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我很快收到超過50萬的聯絡
06:06
emails, social networking --
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來自電郵 社交聯網
06:08
most of them were a suggestion
on how to cure my cancer,
on how to cure my cancer,
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多數是提議怎樣醫好我的病
06:11
but more of them were about
how to cure myself
how to cure myself
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大部分人都視我為一個人
06:15
as a full individual.
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來討論療法
06:18
For example, many thousands of videos,
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例如他們製造無數的影片
06:22
images, pictures, art performances
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圖像 又做藝術表演
06:26
were produced for La Cura.
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幫助La Cura
06:28
For example, here we see
Francesca Fini in her performance.
Francesca Fini in her performance.
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例如 這是F. Fini 的演出
06:33
Or, as artist Patrick Lichty has done:
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又或者藝術家P. Lichty
06:37
He produced a 3D sculpture of my tumor
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他替我的腫瘤做了一個立體雕刻品
06:42
and put it on sale on Thingiverse.
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放在Thingivese 網出售
06:44
Now you can have my cancer, too!
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現在你也可以擁有我的腫瘤
06:47
(Laughter)
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（笑聲）
06:49
Which is a nice thing,
if you think about it,
if you think about it,
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這是一件好事 如果你想到
06:52
we can share our cancer.
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大家共同感受我患癌病的經歷
06:56
And this was going on --
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這件事還有下文
06:58
scientists, the traditional
medicine experts,
medicine experts,
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科學家 醫學專家
07:02
several researchers, doctors --
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硏究學者 醫生等
07:03
all connected with me to give advice.
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都找我提供意見
07:06
With all this information and support,
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得到這些資訊和支持後
07:08
I was able to form a team
of several neurosurgeons,
of several neurosurgeons,
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我建立一支團隊 包括神經㚈科專家
07:14
traditional doctors,
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醫生
07:16
oncologists, and several
hundred volunteers
hundred volunteers
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腫瘤專家 還有數百名義工
07:23
with whom I was able to discuss
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我可以跟這批人
07:26
the information I was receiving,
which is very important.
which is very important.
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一同研究重要的資料
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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根據不同的文化 用不同的語言
07:38
in many languages,
according to many cultures.
according to many cultures.
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研究治病的策略
07:41
And the current strategy
spans the whole world
spans the whole world
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現時的策略席捲全球
07:45
and thousands of years of human history,
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以至人類數千年的歷史
07:47
which is quite remarkable for me.
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我覺得這是很了不起的
07:49
[Surgery]
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［㚈科手術］
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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接著我做了磁力共振 幸好病程沒有惡化
07:57
So I was able to take my time and choose.
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於是我有充足的時間做決定
08:00
I chose the doctor I wanted to work with,
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挑選合適的醫生 跟我並肩作戰
08:04
I chose the hospital I wanted to stay in,
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挑選合適的醫院入住
08:06
and in the meanwhile, I was supported
by thousands of people,
by thousands of people,
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一時間 獲得那麼多人的支持
08:10
none of whom felt pity for me.
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沒有一個是因為可憐我
08:13
Everyone felt like they could
take an active role
take an active role
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每人都很積極地
08:19
in helping me to get well,
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幫助我盡快復原
08:21
and this was the most important
part of La Cura.
part of La Cura.
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這是La Cura 最可貴的地方
08:26
What are the outcomes?
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最後的結果如何？
08:28
I'm fine, as you can see, pretty fine.
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我身體很好 你看我面色不錯吧！
08:30
(Applause)
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（鼓掌聲）
08:35
I have excellent news:
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我有好消息
08:38
After the surgery --
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手術完畢後
08:39
I have -- I had a very low-grade glioma,
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我只有微量的膠質瘤
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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那是良性的腫瘤 癌細胞不再增生
08:49
I have completely changed
my life and my lifestyle.
my life and my lifestyle.
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我徹底了改變自己的生活方式
08:54
Everything I did was thoughtfully
designed to get me engaged.
designed to get me engaged.
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所有事情都盡量參與其中
09:00
Up until the very last few
minutes of the surgery,
minutes of the surgery,
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甚至在手術前的片刻
09:04
which was very intense,
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時間非常緊迫
09:06
a matrix of electrodes
was implanted in my brain
was implanted in my brain
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要從腦部的這一邊
09:10
from this side,
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植入電極矩陣
09:12
to be able to build a functional map
of what the brain controls.
of what the brain controls.
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然後構成一張功能腦地圖
09:17
And right before the operation,
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趕及在動手術前
09:20
we were able to discuss
the functional map of my brain
the functional map of my brain
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大家可以跟醫生 利用這面腦地圖
09:27
with the doctor, to understand
which risks I was running into
which risks I was running into
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討論我會遇到那些風險
09:32
and if there were any I wanted to avoid.
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如果有的 又怎樣去避開它
09:36
Obviously, there were.
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很明顯 那是有風險
09:38
[Open]
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［開明］
09:39
And this openness was really
the fundamental part of La Cura.
the fundamental part of La Cura.
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開明真是La Cura 的核心部分
09:44
Thousands of people shared
their stories, their experiences.
their stories, their experiences.
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很多朋友分享他們的故事經歷
09:49
Doctors got to talk with people
they don't usually consult
they don't usually consult
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醫生為了硏究癌症
09:54
when they think about cancer.
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跟不來看病的人對話
09:59
I'm a self-founding,
continuous state of translation
continuous state of translation
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我自發地不斷翻譯
10:04
among many different languages,
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不同的語言
10:06
in which science meets emotion
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做成科學跟情緒的交滙
10:10
and conventional research
meets traditional research.
meets traditional research.
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常規研究跟傳統研究的交滙
10:14
[Society]
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［社會］
10:16
The most important thing of La Cura
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La Cura 裡 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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就是人人可以參與 互相交流的社會
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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每個成員的健康 都是息息相關
10:36
This global performance
is my open-source cure for cancer.
is my open-source cure for cancer.
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我的癌症療方 就是來自他們的努力成果
10:41
And from what I feel,
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而我覺得
10:43
it's a cure for me, but for us all.
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這個療方屬於我的 也屬於大家的
10:46
Thank you.
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多謝
10:47
(Applause).
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（鼓掌聲）
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