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

Prevodilac: Milica Radenkovic Lektor: Mile Živković

This back here was my brain cancer.

Ovo iza je bio moj rak mozga.

Isn't it nice?

Zar nije lep?

(Laughter)

(Smeh)

The key phrase is "was,"

Ključna reč je "bio",

phew.

pfju.

(Applause)

(Aplauz)

Having brain cancer was really, as you can imagine,

Imati rak mozga je bila stvarno, kao što možete zamisliti,

shocking news for me.

šokantna vest za mene.

I knew nothing about cancer.

Nisam znao ništa o raku.

In Western cultures, when you have cancer,

U zapadnim kulturama, kada imate rak,

it's as if you disappear in a way.

kao da nestajete na neki način.

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

Vaš život složenog ljudskog bića zamenjen je medicinskim podacima:

Your images, your exams, your lab values,

vašim nalazima, ispitivanjima, laboratorijskim vrednostima,

a list of medicines.

listom lekova.

And everyone changes as well.

I svi se takođe menjaju.

You suddenly become a disease on legs.

Iznenada postajete hodajuća bolest.

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

Doktori počinju da govore jezikom koji ne razumete.

They start pointing their fingers

Počinju da upiru prstom

at your body and your images.

na vaše telo i vaše nalaze.

People start changing as well

Ljudi takođe počinju da se menjaju

because they start dealing with the disease,

zato što počinju da se bave bolešću

instead of with the human being.

umesto ljudskim bićem.

They say, "What did the doctor say?"

Kažu: "Šta su rekli doktori?"

before even saying, "Hello."

pre nego što čak kažu "Zdravo".

And in the meanwhile,

A u međuvremenu,

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

vi ste ostavljeni sa pitanjima na koja niko ne daje odgovor.

These are the "Can I?" questions:

Ovo su "Mogu li?" pitanja:

Can I work while I have cancer?

Mogu li da radim dok imam rak?

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

Mogu li da učim? Mogu li da vodim ljubav? Mogu li da budem kreativan?

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

I pitate se: "Šta sam učinio da zaslužim ovo?"

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

Pitate se: "Mogu li da promenim nešto u svom načinu života?"

You wonder, "Can I do something?

Pitate se: "Mogu li da uradim nešto?

Are there any other options?"

Da li postoje neke druge opcije?"

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

I, očigledno, doktori su dobri momci u svim ovim scenarijima,

because they are very professional and dedicated to curing you.

zato što su veoma profesionalni i posvećeni vašem izlečenju

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

Ali oni su takođe veoma navikli da moraju da se bave pacijentima,

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

tako da bih rekao da ponekad smetnu s uma da je ovo mučenje za vas

and that you become, literally, a patient --

i postajete, bukvalno, pacijent -

"patient" means "the one who waits."

"pacijent" znači "onaj koji čeka".

(Laughter)

(Smeh)

Things are changing, but classically,

Stvari se menjaju, ali najčešće,

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

oni su skloni da vas ni na koji način ne podstaknu da saznate o svom stanju,

to get your friends and family engaged,

da podstaknu vaše prijatelje i porodicu da se uključe,

or showing you ways in which you can change your lifestyle

niti da vam pokažu načine da promenite stil života

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

da umanjite rizike onoga kroz za šta prolazite.

But instead, you're forced there to wait

Umesto toga prinuđeni ste da čekate

in the hands of a series of very professional strangers.

u rukama veoma profesionalnih stranaca.

While I was in the hospital,

Dok sam bio u bolnici,

I asked for a printed-out picture of my cancer

tražio sam odštampanu sliku mog raka

and I spoke with it.

i razgovarao sam sa njim.

It was really hard to obtain,

Bilo je teško dobiti je,

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

jer niije uobičajna praksa da tražite sliku sopstvenog raka.

I talked to it and I said,

Pričao sam sa njim i rekao sam:

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

"U redu, raku, ti nisi sve što sam ja.

There's more to me.

Postoji još delova mene.

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

Lek, koji god da je, moraće da se bavi sa mnom celim."

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

I tako sam, sledećeg dana, napustio bolnicu uprkos savetu doktora.

I was determined to change my relationship with the cancer

Bio sam rešen da promenim svoj odnos sa rakom

and I was determined to learn more about my cancer

i bio sam rešen da naučim više o svom raku

before doing anything as drastic as a surgery.

pre nego što uradim bilo šta drastično poput operacije.

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

Ja sam umetnik, i koristim nekoliko oblika svima dostupnih tehnologija

and open information in my practice.

i informacija u svom radu.

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

Pa je za mene najbolje bilo da sve stavim onlajn, da stavim informacije onlajn,

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

i koristim ih tako da može svako da im pristupi.

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

Tako sam napravio sajt, koji se zove La Cura,

on which I put my medical data, online.

na koji sam stavio svoje medicinske podatke.

I actually had to hack it

Zapravo sam morao da ga hakujem

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

i to je stvar o kojoj možemo da pričamo u drugom govoru.

(Laughter)

(Smeh)

I chose this word, La Cura --

Izabrao sam ovu reč, La Cura -

La Cura in Italian means "the cure" --

La Cura na italijanskom znači "lek" -

because in many different cultures,

zato što u različitim kulturama,

the word "cure" can mean many different things.

reč "lek" može da znači mnogo različitih stvari.

In our Western cultures,

U našim zapadnim kulturama

it means eradicating or reversing a disease,

znači uništiti ili preokrenuti bolest,

but in different cultures,

ali u drugim kulturama,

for example, a culture from Asia,

na primer, kulturi iz Azije,

from the Mediterranean, from Latin countries, from Africa,

Mediterana, latinskih zemalja, Afrike,

it can mean many more things.

može da znači još mnogo stvari.

Of course, I was interested in the opinions of doctors

Naravno, bio sam zainteresovan za mišljenja doktora

and healthcare providers,

i zdravstvenih radnika,

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

ali sam takođe bio zainteresovan za lek umetnika, pesnika,

of the designer,

dizajnera,

of, who knows, the musicians.

ko zna, muzičara.

I was interested in the social cure,

Bio sam zainteresovan za društveni lek,

I was interested in the psychological cure,

bio sam zainteresovan za psihološki lek,

I was interested in the spiritual cure,

bio sam zainteresovan za duhovni lek,

I was interested in the emotional cure,

bio sam zainteresovan za emotivni lek,

I was interested in any form of cure.

bio sam zainteresovan za bilo koji vid leka.

And, it worked.

I urodilo je plodom.

The La Cura website went viral.

Sajt La Cura je postao popularan na internetu.

I received lots of media attention from Italy and from abroad

Dobio sam dosta pažnje medija iz Italije i inostranstva

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

i ubrzo sam primio više od 500.000 kontakata -

emails, social networking --

putem mejla, socijalnih mreža -

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

većina njih su bili predlozi kako da izlečim rak,

but more of them were about how to cure myself

ali više njih su bili predlozi kako da izlečim sebe,

as a full individual.

kao celovitog pojedinca.

For example, many thousands of videos,

Na primer, više hiljada video snimaka,

images, pictures, art performances

fotografija, slika, umetničkih nastupa

were produced for La Cura.

napravljeno je za La Cura-u.

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

Na primer, ovde vidimo Frančesku Fini u svom performansu.

Or, as artist Patrick Lichty has done:

Ili, kao što je umetnik Patrik Lihti učinio:

He produced a 3D sculpture of my tumor

On je napravio 3D skulpturu mog tumora

and put it on sale on Thingiverse.

i stavio je na prodaju na Tingivers.

Now you can have my cancer, too!

Sada i vi takođe možete imati moj rak!

(Laughter)

(Smeh)

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

Što je lepo, ako razmislite o tome,

we can share our cancer.

možemo da delimo naš rak.

And this was going on --

I dešavalo se da su -

scientists, the traditional medicine experts,

naučnici, eksperti tradicionalne medicine,

several researchers, doctors --

nekoliko istraživača, doktori -

all connected with me to give advice.

svi bili povezani sa mnom da bi dali savet.

With all this information and support,

Sa svim tim informacijama i podrškom,

I was able to form a team of several neurosurgeons,

uspeo sam da formiram tim od nekoliko neurohirurga

traditional doctors,

doktora tradicionalne medicine,

oncologists, and several hundred volunteers

onkologa, i nekoliko stotina volontera

with whom I was able to discuss

sa kojima sam mogao da razgovaram

the information I was receiving, which is very important.

o informacijama koje sam dobijao, što je veoma važno.

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

I zajedno bili smo u stanju da napravimo strategiju mog izlečenja

in many languages, according to many cultures.

na mnogo jezika, u skladu sa mnogim kulturama.

And the current strategy spans the whole world

I trenutna strategija povezuje ceo svet

and thousands of years of human history,

i hiljade godina ljudske istorije,

which is quite remarkable for me.

što je za mene prilično izuzetno.

[Surgery]

[Operacija]

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

Srećom, snimci magnetne rezonance nakon operacije pokazali su

mali, odnosno nikakav rast tumora.

So I was able to take my time and choose.

Tako da sam mogao da izdvojim vreme i izaberem.

I chose the doctor I wanted to work with,

Izabrao sam doktora sa kojim sam želeo da radim,

I chose the hospital I wanted to stay in,

izabrao sam bolnicu u kojoj sam želeo da budem,

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

a u međuvremenu, hiljade ljudi su me podržale,

none of whom felt pity for me.

od kojih me niko nije sažaljevao.

Everyone felt like they could take an active role

Svi su osećali da mogu da preuzmu aktivnu ulogu

in helping me to get well,

u pomaganju da ozdravim,

and this was the most important part of La Cura.

i ovo je bila najbitnija uloga La Cura-e.

What are the outcomes?

Šta su ishodi?

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

Dobro sam, kao što možete da vidite, dosta dobro.

(Applause)

(Aplauz)

I had excellent news

Nakon operacije,

after the surgery --

čuo sam dobre vesti -

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

imam - imao sam gliome veoma niskog stepena

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.

Potpuno sam promenio svoj život i stil života.

Everything I did was thoughtfully designed to get me engaged.

Sve što sam uradio bilo je smišljeno napravljeno da bi me uključilo.

Up until the very last few minutes of the surgery,

Sve do poslednjih nekoliko minuta operacije,

which was very intense,

koja je bila veoma intenzivna,

a matrix of electrodes was implanted in my brain

matriks elektroda bio je implantovan u moj mozak,

from this side,

sa ove strane,

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

kako bi se napravila funkcionalna mapa onoga što mozak kontroliše.

And right before the operation,

I neposredno pre operacije

we were able to discuss the functional map of my brain

mogli smo da razgovaramo o funkcionalnoj mapi moga mozga

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

sa doktorom, kako bismo razumeli rizike sa kojima sam se suočavao

and if there were any I wanted to avoid.

i da li su postojali neki koje sam želeo da izbegnem.

Obviously, there were.

Naravno, bilo ih je.

[Open]

[Otvoren]

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

I ova otvorenost je bila stvarno bitan deo La Cura-e.

Thousands of people shared their stories, their experiences.

Hiljade ljudi su podelili svoje priče, svoja iskustva.

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

Doktori su dobili priliku da pričaju sa ljudima koje obično ne konsultuju

when they think about cancer.

kada razmišljaju o raku.

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

Ja sam samouspostavljeno, kontinuirano stanje prevoda

among many different languages,

među mnogo različitih jezika,

in which science meets emotion

u kome se sreću nauka i emocija

and conventional research meets traditional research.

i u kome se sreću konvencionalno i tradicionalno istraživanje.

[Society]

[Društvo]

The most important thing of La Cura

Najbitnija stvar kod La Cura-e

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

bila je osećati se kao deo stvarno uključenog i povezanog društva

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

čija dobrobit stvarno zavisi od dobrobiti njegovih delova.

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

Ovaj globalni performans je moj svima dostupan lek za rak.

And from what I feel,

I osećam

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

da je to lek ne samo za mene, već za sve nas.

Thank you.

Hvala vam.

(Applause).

(Aplauz)