Isn't it nice?

我的腦惡性腫瘤以前就在這

(Laughter)

漂不漂亮？

The key phrase is "was,"

（笑聲）

phew.

最關鍵的詞語是＂以前＂

(Applause)

唷！

Having brain cancer was really, as you can imagine,

（鼓掌聲）

shocking news for me.

你可以想像得到 當我知道患腦癌時

I knew nothing about cancer.

真是非常震驚

In Western cultures, when you have cancer,

我對癌症一無所知

it's as if you disappear in a way.

生活在西方文化 如果你得了癌症

Your life as a complex human being is replaced by medical data:

便好像失去自己

Your images, your exams, your lab values,

一個複雜的人 卻被醫療數據取代：

a list of medicines.

你的影象 檢查報告 化驗結果

And everyone changes as well.

和一連串的藥物清單

You suddenly become a disease on legs.

所有人都變了

Doctors start speaking a language which you don't understand.

你忽然變成一個有腳的疾病

They start pointing their fingers

醫生漸漸講一些難懂的語言

at your body and your images.

開始指著

People start changing as well

你的身體和圖像

because they start dealing with the disease,

其他人也變得陌生

instead of with the human being.

他們只會把你當成疾病來應付

They say, "What did the doctor say?"

而不是對待一個人

before even saying, "Hello."

他們未跟你說聲好前

And in the meanwhile,

只會問：醫生説了什麼？

you're left with questions to which nobody gives an answer.

當時我有很多疑問

These are the "Can I?" questions:

但是沒有人回答我

Can I work while I have cancer?

這些都是＂可否＂的問題

Can I study? Can I make love? Can I be creative?

我有癌症 可否上班？

And you wonder, "What have I done to deserve this?"

可否讀書？可否做愛？可否創作？

You wonder, "Can I change something about my lifestyle?"

那時覺得不解 ＂我做了什麼得到這樣的對待？＂

You wonder, "Can I do something?

＂可否改變自己的生活方式？＂

Are there any other options?"

＂我可否做點什麼？＂

And, obviously, doctors are the good guys in all these scenarios,

＂有沒有其他選擇？＂

because they are very professional and dedicated to curing you.

很明顯 醫生在這種環境 是最得人心

But they also are very used to having to deal with patients,

因為他們非常專業 而且盡心醫病

so I'd say that they sometimes lose the idea that this is torture for you

但是醫生照顧病人 實在太過熟練

and that you become, literally, a patient --

有時忘記了這樣治療 只會折磨你

"patient" means "the one who waits."

你變成字面上 病人的稱呼

(Laughter)

其實 等如＂一個等待的人＂

Things are changing, but classically,

（笑聲）

they tend to not engage you in any way to learn about your condition,

每件事不停在變 但方式守舊

to get your friends and family engaged,

醫生不會讓你知道病情

or showing you ways in which you can change your lifestyle

只讓親朋戚友商量病情

to minimize the risks of what you're going through.

也不會教你如何改善生活方式

But instead, you're forced there to wait

減低疾病帶來的風險

in the hands of a series of very professional strangers.

反而要我在那裡呆等

While I was in the hospital,

任由那幾位陌生的大國手決定

I asked for a printed-out picture of my cancer

我住院時

and I spoke with it.

要求醫院給我一張自己腫瘤的圖片

It was really hard to obtain,

好讓我跟腫瘤對話

because it's not common practice to ask for a picture of your own cancer.

這是很難辦到的

I talked to it and I said,

因為醫院通常不會允許病人這樣做

"Okay, cancer, you're not all there is to me.

我跟這圖片說：

There's more to me.

＂腫瘤 我不只剩得你

A cure, whichever it is, will have to deal with the whole of me."

我還擁有很多東西

And so, the next day, I left the hospital against medical advice.

無論什麼方法 也要待我如完整的人

I was determined to change my relationship with the cancer

第二日我不理他們的勸告 離開醫院

and I was determined to learn more about my cancer

決心要改變我跟癌症的關係

before doing anything as drastic as a surgery.

要做重要的決定前 例如動手術

I'm an artist, I use several forms of open-source technologies

決心要先多了解自己的腫瘤

and open information in my practice.

我從事藝術工作 因此可以在制作室

So my best bet was to get it all out there, get the information out there,

利用多種的網上共享技術和資料

and use it so that it could be accessed by anyone.

這是我最好的辦法 從那

So I created a website, which is called La Cura,

跟著用來研究 任何人也可以享用

on which I put my medical data, online.

我建立了一個網站 叫做La Cura

I actually had to hack it

把自己所有醫療數據 放上網

and that's a thing which we can talk about in another speech.

我其實入侵了那個網站

(Laughter)

這個話題 我們留待下次演講再說

I chose this word, La Cura --

（笑聲）

La Cura in Italian means "the cure" --

我決定用La Cura 這個名字

because in many different cultures,

它的意大利語意思是＂cure＂

the word "cure" can mean many different things.

由於不同的文化

In our Western cultures,

＂cure＂可以有不同的解釋

it means eradicating or reversing a disease,

在我們的西方文化

but in different cultures,

它表示根絕或打敗疾病

for example, a culture from Asia,

但在不同的文化

from the Mediterranean, from Latin countries, from Africa,

例如文化源自亞洲

it can mean many more things.

地中海 拉丁美洲 和非洲

Of course, I was interested in the opinions of doctors

它有很多層意思

and healthcare providers,

當然 我重視醫生

but I was also interested in the cure of the artist, of the poet,

保健人員的意見

of the designer,

但我也在意藝術家 詩人

of, who knows, the musicians.

設計師的療方

I was interested in the social cure,

誰知道 可能是音樂家的良方

I was interested in the psychological cure,

我對社交療法有興趣

I was interested in the spiritual cure,

對心理學療法有興趣

I was interested in the emotional cure,

對心靈療法有興趣

I was interested in any form of cure.

也對情緒療法有興趣

And, it worked.

幾乎都留意所有療法

The La Cura website went viral.

最後果然有效

I received lots of media attention from Italy and from abroad

La Cura 網站變得非常受歡迎

and I quickly received more than 500,000 contacts --

獲得很多意大利和海外媒體的注意

emails, social networking --

我很快收到超過50萬的聯絡

most of them were a suggestion on how to cure my cancer,

來自電郵 社交聯網

but more of them were about how to cure myself

多數是提議怎樣醫好我的病

as a full individual.

大部分人都視我為一個人

For example, many thousands of videos,

來討論療法

images, pictures, art performances

例如他們製造無數的影片

were produced for La Cura.

圖像 又做藝術表演

For example, here we see Francesca Fini in her performance.

幫助La Cura

Or, as artist Patrick Lichty has done:

例如 這是F. Fini 的演出

He produced a 3D sculpture of my tumor

又或者藝術家P. Lichty

and put it on sale on Thingiverse.

他替我的腫瘤做了一個立體雕刻品

Now you can have my cancer, too!

放在Thingivese 網出售

(Laughter)

現在你也可以擁有我的腫瘤

Which is a nice thing, if you think about it,

（笑聲）

we can share our cancer.

這是一件好事 如果你想到

And this was going on --

大家共同感受我患癌病的經歷

scientists, the traditional medicine experts,

這件事還有下文

several researchers, doctors --

科學家 醫學專家

all connected with me to give advice.

硏究學者 醫生等

With all this information and support,

都找我提供意見

I was able to form a team of several neurosurgeons,

得到這些資訊和支持後

traditional doctors,

我建立一支團隊 包括神經㚈科專家

oncologists, and several hundred volunteers

醫生

with whom I was able to discuss

腫瘤專家 還有數百名義工

the information I was receiving, which is very important.

我可以跟這批人

And together, we were able to form a strategy for my own cure

一同研究重要的資料

in many languages, according to many cultures.

根據不同的文化 用不同的語言

And the current strategy spans the whole world

研究治病的策略

and thousands of years of human history,

現時的策略席捲全球

which is quite remarkable for me.

以至人類數千年的歷史

[Surgery]

我覺得這是很了不起的

The follow-up MRIs showed, luckily, little to no growth of the cancer.

［㚈科手術］

So I was able to take my time and choose.

接著我做了磁力共振 幸好病程沒有惡化

I chose the doctor I wanted to work with,

於是我有充足的時間做決定

I chose the hospital I wanted to stay in,

挑選合適的醫生 跟我並肩作戰

and in the meanwhile, I was supported by thousands of people,

挑選合適的醫院入住

none of whom felt pity for me.

一時間 獲得那麼多人的支持

Everyone felt like they could take an active role

沒有一個是因為可憐我

in helping me to get well,

每人都很積極地

and this was the most important part of La Cura.

幫助我盡快復原

What are the outcomes?

這是La Cura 最可貴的地方

I'm fine, as you can see, pretty fine.

最後的結果如何？

(Applause)

我身體很好 你看我面色不錯吧！

I had excellent news

（鼓掌聲）

after the surgery --

我有好消息

I have -- I had a very low-grade glioma,

手術完畢後

which is a "good" kind of cancer which doesn't grow a lot.

我只有微量的膠質瘤

I have completely changed my life and my lifestyle.

那是良性的腫瘤 癌細胞不再增生

Everything I did was thoughtfully designed to get me engaged.

我徹底了改變自己的生活方式

Up until the very last few minutes of the surgery,

所有事情都盡量參與其中

which was very intense,

甚至在手術前的片刻

a matrix of electrodes was implanted in my brain

時間非常緊迫

from this side,

要從腦部的這一邊

to be able to build a functional map of what the brain controls.

植入電極矩陣

And right before the operation,

然後構成一張功能腦地圖

we were able to discuss the functional map of my brain

趕及在動手術前

with the doctor, to understand which risks I was running into

大家可以跟醫生 利用這面腦地圖

and if there were any I wanted to avoid.

討論我會遇到那些風險

Obviously, there were.

如果有的 又怎樣去避開它

[Open]

很明顯 那是有風險

And this openness was really the fundamental part of La Cura.

［開明］

Thousands of people shared their stories, their experiences.

開明真是La Cura 的核心部分

Doctors got to talk with people they don't usually consult

很多朋友分享他們的故事經歷

when they think about cancer.

醫生為了硏究癌症

I'm a self-founding, continuous state of translation

跟不來看病的人對話

among many different languages,

我自發地不斷翻譯

in which science meets emotion

不同的語言

and conventional research meets traditional research.

做成科學跟情緒的交滙

[Society]

常規研究跟傳統研究的交滙

The most important thing of La Cura

［社會］

was to feel like a part of a really engaged and connected society

La Cura 裡 最重要的事情

whose wellness really depends on the wellness of all of its components.

就是人人可以參與 互相交流的社會

This global performance is my open-source cure for cancer.

每個成員的健康 都是息息相關

And from what I feel,

我的癌症療方 就是來自他們的努力成果

it's a cure for me, but for us all.

而我覺得

Thank you.

這個療方屬於我的 也屬於大家的

(Applause).

多謝