Salvatore Iaconesi: What happened when I open-sourced my brain cancer

譯者: Li Tao 審譯者: Bighead Ge

This back here was my brain cancer.

我的腦惡性腫瘤以前就在這𥚃

Isn't it nice?

漂不漂亮？

(Laughter)

（笑聲）

The key phrase is "was,"

最關鍵的詞語是＂以前＂

phew.

唷！

(Applause)

（鼓掌聲）

Having brain cancer was really, as you can imagine,

你可以想像得到 當我知道患腦癌時

shocking news for me.

真是非常震驚

I knew nothing about cancer.

我對癌症一無所知

In Western cultures, when you have cancer,

生活在西方文化 如果你得了癌症

it's as if you disappear in a way.

便好像失去自己

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

一個複雜的人 卻被醫療數據取代：

Your images, your exams, your lab values,

你的影象 檢查報告 化驗結果

a list of medicines.

和一連串的藥物清單

And everyone changes as well.

所有人都變了

You suddenly become a disease on legs.

你忽然變成一個有腳的疾病

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

醫生漸漸講一些難懂的語言

They start pointing their fingers

開始指著

at your body and your images.

你的身體和圖像

People start changing as well

其他人也變得陌生

because they start dealing with the disease,

他們只會把你當成疾病來應付

instead of with the human being.

而不是對待一個人

They say, "What did the doctor say?"

他們未跟你說聲好前

before even saying, "Hello."

只會問：醫生説了什麼？

And in the meanwhile,

當時我有很多疑問

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

但是沒有人回答我

These are the "Can I?" questions:

這些都是＂可否＂的問題

Can I work while I have cancer?

我有癌症 可否上班？

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

可否讀書？可否做愛？可否創作？

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

那時覺得不解 ＂我做了什麼得到這樣的對待？＂

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

＂可否改變自己的生活方式？＂

You wonder, "Can I do something?

＂我可否做點什麼？＂

Are there any other options?"

＂有沒有其他選擇？＂

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

很明顯 醫生在這種環境 是最得人心

because they are very professional and dedicated to curing you.

因為他們非常專業 而且盡心醫病

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

但是醫生照顧病人 實在太過熟練

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

有時忘記了這樣治療 只會折磨你

and that you become, literally, a patient --

你變成字面上 病人的稱呼

"patient" means "the one who waits."

其實 等如＂一個等待的人＂

(Laughter)

（笑聲）

Things are changing, but classically,

每件事不停在變 但方式守舊

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

醫生不會讓你知道病情

to get your friends and family engaged,

只讓親朋戚友商量病情

or showing you ways in which you can change your lifestyle

也不會教你如何改善生活方式

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

減低疾病帶來的風險

But instead, you're forced there to wait

反而要我在那裡呆等

in the hands of a series of very professional strangers.

任由那幾位陌生的大國手決定

While I was in the hospital,

我住院時

I asked for a printed-out picture of my cancer

要求醫院給我一張自己腫瘤的圖片

and I spoke with it.

好讓我跟腫瘤對話

It was really hard to obtain,

這是很難辦到的

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

因為醫院通常不會允許病人這樣做

I talked to it and I said,

我跟這圖片說：

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

＂腫瘤 我不只剩得你

There's more to me.

我還擁有很多東西

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

無論什麼方法 也要待我如完整的人

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

第二日我不理他們的勸告 離開醫院

I was determined to change my relationship with the cancer

決心要改變我跟癌症的關係

and I was determined to learn more about my cancer

要做重要的決定前 例如動手術

before doing anything as drastic as a surgery.

決心要先多了解自己的腫瘤

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

我從事藝術工作 因此可以在制作室

and open information in my practice.

利用多種的網上共享技術和資料

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

這是我最好的辦法 從那𥚃取得資訊

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

跟著用來研究 任何人也可以享用

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

我建立了一個網站 叫做La Cura

on which I put my medical data, online.

把自己所有醫療數據 放上網

I actually had to hack it

我其實入侵了那個網站

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

這個話題 我們留待下次演講再說

(Laughter)

（笑聲）

I chose this word, La Cura --

我決定用La Cura 這個名字

La Cura in Italian means "the cure" --

它的意大利語意思是＂cure＂

because in many different cultures,

由於不同的文化

the word "cure" can mean many different things.

＂cure＂可以有不同的解釋

In our Western cultures,

在我們的西方文化

it means eradicating or reversing a disease,

它表示根絕或打敗疾病

but in different cultures,

但在不同的文化

for example, a culture from Asia,

例如文化源自亞洲

from the Mediterranean, from Latin countries, from Africa,

地中海 拉丁美洲 和非洲

it can mean many more things.

它有很多層意思

Of course, I was interested in the opinions of doctors

當然 我重視醫生

and healthcare providers,

保健人員的意見

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

但我也在意藝術家 詩人

of the designer,

設計師的療方

of, who knows, the musicians.

誰知道 可能是音樂家的良方

I was interested in the social cure,

我對社交療法有興趣

I was interested in the psychological cure,

對心理學療法有興趣

I was interested in the spiritual cure,

對心靈療法有興趣

I was interested in the emotional cure,

也對情緒療法有興趣

I was interested in any form of cure.

幾乎都留意所有療法

And, it worked.

最後果然有效

The La Cura website went viral.

La Cura 網站變得非常受歡迎

I received lots of media attention from Italy and from abroad

獲得很多意大利和海外媒體的注意

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

我很快收到超過50萬的聯絡

emails, social networking --

來自電郵 社交聯網

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

多數是提議怎樣醫好我的病

but more of them were about how to cure myself

大部分人都視我為一個人

as a full individual.

來討論療法

For example, many thousands of videos,

例如他們製造無數的影片

images, pictures, art performances

圖像 又做藝術表演

were produced for La Cura.

幫助La Cura

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

例如 這是F. Fini 的演出

Or, as artist Patrick Lichty has done:

又或者藝術家P. Lichty

He produced a 3D sculpture of my tumor

他替我的腫瘤做了一個立體雕刻品

and put it on sale on Thingiverse.

放在Thingivese 網出售

Now you can have my cancer, too!

現在你也可以擁有我的腫瘤

(Laughter)

（笑聲）

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

這是一件好事 如果你想到

we can share our cancer.

大家共同感受我患癌病的經歷

And this was going on --

這件事還有下文

scientists, the traditional medicine experts,

科學家 醫學專家

several researchers, doctors --

硏究學者 醫生等

all connected with me to give advice.

都找我提供意見

With all this information and support,

得到這些資訊和支持後

I was able to form a team of several neurosurgeons,

我建立一支團隊 包括神經㚈科專家

traditional doctors,

醫生

oncologists, and several hundred volunteers

腫瘤專家 還有數百名義工

with whom I was able to discuss

我可以跟這批人

the information I was receiving, which is very important.

一同研究重要的資料

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

根據不同的文化 用不同的語言

in many languages, according to many cultures.

研究治病的策略

And the current strategy spans the whole world

現時的策略席捲全球

and thousands of years of human history,

以至人類數千年的歷史

which is quite remarkable for me.

我覺得這是很了不起的

[Surgery]

［㚈科手術］

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

接著我做了磁力共振 幸好病程沒有惡化

So I was able to take my time and choose.

於是我有充足的時間做決定

I chose the doctor I wanted to work with,

挑選合適的醫生 跟我並肩作戰

I chose the hospital I wanted to stay in,

挑選合適的醫院入住

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

一時間 獲得那麼多人的支持

none of whom felt pity for me.

沒有一個是因為可憐我

Everyone felt like they could take an active role

每人都很積極地

in helping me to get well,

幫助我盡快復原

and this was the most important part of La Cura.

這是La Cura 最可貴的地方

What are the outcomes?

最後的結果如何？

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

我身體很好 你看我面色不錯吧！

(Applause)

（鼓掌聲）

I had excellent news

我有好消息

after the surgery --

手術完畢後

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

我只有微量的膠質瘤

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

那是良性的腫瘤 癌細胞不再增生

I have completely changed my life and my lifestyle.

我徹底了改變自己的生活方式

Everything I did was thoughtfully designed to get me engaged.

所有事情都盡量參與其中

Up until the very last few minutes of the surgery,

甚至在手術前的片刻

which was very intense,

時間非常緊迫

a matrix of electrodes was implanted in my brain

要從腦部的這一邊

from this side,

植入電極矩陣

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

然後構成一張功能腦地圖

And right before the operation,

趕及在動手術前

we were able to discuss the functional map of my brain

大家可以跟醫生 利用這面腦地圖

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

討論我會遇到那些風險

and if there were any I wanted to avoid.

如果有的 又怎樣去避開它

Obviously, there were.

很明顯 那是有風險

[Open]

［開明］

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

開明真是La Cura 的核心部分

Thousands of people shared their stories, their experiences.

很多朋友分享他們的故事經歷

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

醫生為了硏究癌症

when they think about cancer.

跟不來看病的人對話

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

我自發地不斷翻譯

among many different languages,

不同的語言

in which science meets emotion

做成科學跟情緒的交滙

and conventional research meets traditional research.

常規研究跟傳統研究的交滙

[Society]

［社會］

The most important thing of La Cura

La Cura 裡 最重要的事情

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

就是人人可以參與 互相交流的社會

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

每個成員的健康 都是息息相關

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

我的癌症療方 就是來自他們的努力成果

And from what I feel,

而我覺得

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

這個療方屬於我的 也屬於大家的

Thank you.

多謝

(Applause).

（鼓掌聲）