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

Prevoditelj: Senzos Osijek Recezent: Ivan Stamenković

This back here was my brain cancer.

Ovo tu bio je moj rak na mozgu.

Isn't it nice?

Nije li lijep?

(Laughter)

(Smijeh)

The key phrase is "was,"

Ključna je riječ „bio“.

phew.

Uh!

(Applause)

(Pljesak)

Having brain cancer was really, as you can imagine,

To da imam rak na mozgu bila je, kao što možete pretpostaviti

shocking news for me.

šokantna vijest za mene.

I knew nothing about cancer.

Ništa nisam znao o raku.

In Western cultures, when you have cancer,

Kada imate rak, u zapadnjačkim kulturama,

it's as if you disappear in a way.

na neki način, nestajete.

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

Vaš život kao složenog ljudskog bića zamijene medicinski podaci:

Your images, your exams, your lab values,

slike, testovi, laboratorijske vrijednosti,

a list of medicines.

popis lijekova.

And everyone changes as well.

I svi se oko vas promijene.

You suddenly become a disease on legs.

Odjednom postanete hodajuća bolest.

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

Liječnici počnu govoriti jezikom koji ne razumijete.

They start pointing their fingers

Upiru prstom

at your body and your images.

u vaše tijelo i slike.

People start changing as well

I ljudi se počnu mijenjati

because they start dealing with the disease,

jer se počnu baviti bolešću

instead of with the human being.

umjesto ljudskim bićem.

They say, "What did the doctor say?"

Pitaju što je rekao liječnik

before even saying, "Hello."

čak i prije nego pozdrave.

And in the meanwhile,

A u međuvremenu

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

vi imate pitanja na koja vam nitko ne daje odgovore.

These are the "Can I?" questions:

To su „Mogu li“ pitanja:

Can I work while I have cancer?

Mogu li raditi dok imam rak?

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

Mogu li učiti? Mogu li voditi ljubav? Mogu li biti kreativan?

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

I pitate se što ste učinili da vam se to dogodi.

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

Pitate se možete li promijeniti svoj način života.

You wonder, "Can I do something?

Pitate se možete li štogod učiniti,

Are there any other options?"

postoji li koja druga mogućnost.

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

I, naravno, liječnici su u čitavoj toj priči pozitivci

because they are very professional and dedicated to curing you.

zato što su vrlo profesionalni i posvećeni vašem liječenju.

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

Ali, također, oni su naviknuli nositi se s pacijentima

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

tako da mislim da ponekad ne shvaćaju da je to za vas mučenje

and that you become, literally, a patient --

i da doslovno postajete pacijent,

"patient" means "the one who waits."

u smislu „onaj koji čeka“.

(Laughter)

(Smijeh)

Things are changing, but classically,

Stvari se mijenjaju, ali kao i obično,

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

ni na koji vas način ne upućuju u vaše stanje.

to get your friends and family engaged,

kao ni vaše prijatelje i obitelj,

or showing you ways in which you can change your lifestyle

niti vas savjetuju kako promijeniti način života

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

kako biste smanjili rizik onoga kroz što prolazite.

But instead, you're forced there to wait

Umjesto toga, prisiljeni ste čekati

in the hands of a series of very professional strangers.

u rukama vrlo ozbiljnih profesionalnih stranaca.

While I was in the hospital,

Kada sam bio u bolnici,

I asked for a printed-out picture of my cancer

tražio sam izrađenu sliku raka

and I spoke with it.

i razgovarao sam s njim.

It was really hard to obtain,

Bilo ju je vrlo teško dobiti

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

jer nije uobičajeno tražiti sliku vlastitog raka.

I talked to it and I said,

Razgovarao sam s njim i rekao:

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

„Ok, raku, ti ne predstavljaš sve što ja jesam.

There's more to me.

Više sam od toga.

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

Lijek, kakav god on bio, morat će se nositi sa mnom u cijelosti.“

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

I tako sam sutradan, unatoč savjetima liječnika, napustio bolnicu.

I was determined to change my relationship with the cancer

Odlučio sam promijeniti svoj odnos s rakom

and I was determined to learn more about my cancer

i odlučio sam naučiti više o njemu

before doing anything as drastic as a surgery.

prije poduzimanja drastičnih mjera, kao što je operacija.

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

Umjetnik sam i koristim nekoliko oblika open-source tehnologija

and open information in my practice.

i otvorenih informacija.

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

Najbolja prilika bila mi je da prikupim sve informacije

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

i koristim ih tako da svima budu dostupne.

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

Napravio sam web stranicu La Cura

on which I put my medical data, online.

na koju sam postavio svoje medicinske podatke.

I actually had to hack it

Morao sam ih ukrasti,

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

ali to je nešto o čemu možemo pričati u nekom drugom govoru.

(Laughter)

(Smijeh)

I chose this word, La Cura --

Izabrao sam tu riječ, La Cura

La Cura in Italian means "the cure" --

što na talijanskom znači lijek

because in many different cultures,

jer u različitim kulturama

the word "cure" can mean many different things.

„lijek“ može značiti različite stvari.

In our Western cultures,

U našim zapadnjačkim kulturama

it means eradicating or reversing a disease,

znači iskorjenjivanje ili poništavanje bolesti,

but in different cultures,

ali u različitim kulturama,

for example, a culture from Asia,

na primjer, azijskoj,

from the Mediterranean, from Latin countries, from Africa,

mediteranskoj, latinsko-američkoj, afričkoj

it can mean many more things.

može imati više značenja.

Of course, I was interested in the opinions of doctors

Naravno, zanimalo me mišljenje liječnika

and healthcare providers,

i zdravstvenih djelatnika,

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

ali i lijek umjetnika, pjesnika,

of the designer,

dizajnera,

of, who knows, the musicians.

od, tko zna, glazbenika.

I was interested in the social cure,

Zanimao me društveni lijek,

I was interested in the psychological cure,

psihološki lijek,

I was interested in the spiritual cure,

duhovni lijek,

I was interested in the emotional cure,

emocionalni lijek,

I was interested in any form of cure.

zanimao me bilo koji oblik lijeka.

And, it worked.

I upalilo je.

The La Cura website went viral.

La Cura stranica postala je hit.

I received lots of media attention from Italy and from abroad

Imao sam veliku medijsku pažnju iz Italije i inozemstva

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

i ubrzo dobio više od 500 000 kontakata-

emails, social networking --

e-mailovi, društvene mreže -

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

većina su bili prijedlozi kako izliječiti moj rak,

but more of them were about how to cure myself

više ih je bilo o tome kako izliječiti samog sebe

as a full individual.

kao pojedinca.

For example, many thousands of videos,

Na primjer, tisuće videa,

images, pictures, art performances

prikaza, slika, umjetničkih izvedbi

were produced for La Cura.

bilo je izrađeno za La Curu.

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

Ovdje, na primjer, vidimo Francescu Fini u njenoj izvedbi.

Or, as artist Patrick Lichty has done:

Ili, što je umjetnik Patrick Lichty učinio:

He produced a 3D sculpture of my tumor

3D skulpturu mog tumora

and put it on sale on Thingiverse.

koju je stavio na prodaju na Thingivers.

Now you can have my cancer, too!

Sada i vi možete imati moj rak!

(Laughter)

(Smijeh)

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

Što je zgodna stvar, ako razmislite o tome,

we can share our cancer.

možemo dijeliti rakove.

And this was going on --

I događalo se ovo -

scientists, the traditional medicine experts,

znanstvenici, tradicionalni medicinski stručnjaci,

several researchers, doctors --

nekoliko istraživača, liječnici -

all connected with me to give advice.

svi povezani sa mnom da bi me savjetovali.

With all this information and support,

Sa svim tim informacijama i potporom,

I was able to form a team of several neurosurgeons,

formirao sam tim od nekoliko neurokirurga,

traditional doctors,

tradicionalnih liječnika,

oncologists, and several hundred volunteers

onkologa, i nekoliko stotina volontera

with whom I was able to discuss

s kojima sam mogao raspravljati

the information I was receiving, which is very important.

o informacijama koje sam primao, što je vrlo važno.

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

A zajedno smo mogli izraditi strategiju za moje izlječenje

in many languages, according to many cultures.

na različitim jezicima, prema različitim kulturama.

And the current strategy spans the whole world

Trenutna strategija uključuje čitav svijet

and thousands of years of human history,

i tisuće godina ljudske povijesti,

which is quite remarkable for me.

što je prilično izvanredno za mene.

[Surgery]

[Operacija]

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

Iduća je MR snimka pokazala minimalno do nepostojeće širenje raka.

So I was able to take my time and choose.

Bio sam u mogućnosti uzeti vremena i izabrati.

I chose the doctor I wanted to work with,

Izabrao sam liječnike s kojima sam htio raditi,

I chose the hospital I wanted to stay in,

bolnicu u kojoj sam htio ostati,

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

a u međuvremenu me podržalo na tisuće ljudi,

none of whom felt pity for me.

od kojih me nitko nije sažalijevao.

Everyone felt like they could take an active role

Svi su se osjećali kao da mogu odigrati aktivnu ulogu

in helping me to get well,

i pomoći mi da ozdravim,

and this was the most important part of La Cura.

a to je bio najvažniji dio La Cure.

What are the outcomes?

Koji su ishodi?

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

Ja sam dobro, kao što vidite, prilično dobro.

(Applause)

(Pljesak)

I had excellent news

Imam odlične vijesti:

after the surgery --

Nakon operacije-

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

imam— imao sam vrlo nizak stupanj glioma,

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

što je „dobra“ vrsta raka koja ne raste puno.

I have completely changed my life and my lifestyle.

Potupno sam promijenio svoj život i način života.

Everything I did was thoughtfully designed to get me engaged.

Sve što sam radio bilo je osmišljeno kako bih se angažirao.

Up until the very last few minutes of the surgery,

Sve do posljednjih nekoliko minuta operacije,

which was very intense,

koja je bila vrlo intenzivna,

a matrix of electrodes was implanted in my brain

matrica elektroda bila je usađena u moj mozak

from this side,

od ove strane,

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

kako bi se izradila funkcionalna mapa onoga što mozak kontrolira.

And right before the operation,

Netom prije operacije

we were able to discuss the functional map of my brain

mogli smo raspravljati o funkcionalnoj mapi mog mozga

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

s liječnicima, kako bismo shvatili koje rizike prihvaćam

and if there were any I wanted to avoid.

i vidjeli postoje li neke koje želim izbjeći.

Obviously, there were.

Naravno, bilo ih je.

[Open]

[Otvori]

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

Otvorenost je bila temeljni dio La Cure.

Thousands of people shared their stories, their experiences.

Tisuće su ljudi su dijelili svoje priče, svoja iskustva.

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

Liječnici su razgovarali s ljudima s kojima se inače ne savjetuju

when they think about cancer.

kada razmišljaju o raku.

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

Samostalno sam osnovana trajna država prijevoda

among many different languages,

među različitim jezicima,

in which science meets emotion

u kojima znanost upoznaje osjećaje,

and conventional research meets traditional research.

a konvencionalno istraživanje upoznaje tradicionalno.

[Society]

[Društvo]

The most important thing of La Cura

Najvažniji dio La Cure

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

je osjećaj da ste dio angažiranog i povezanog društva

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

čija dobrobit zaista ovisi o dobrobiti svih njegovih sastavnica.

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

Ova je globalna izvedba moj open-source lijek za rak.

And from what I feel,

I, kako mi se čini,

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

to je lijek za mene, ali i za sve nas.

Thank you.

Hvala.

(Applause).

(Pljesak).