This back here was my brain cancer. Isn't it nice? (Laughter) The key phrase is "was," phew. (Applause)
Ovo iza je bio moj rak mozga. Zar nije lep? (Smeh) Ključna reč je "bio", pfju. (Aplauz)
Having brain cancer was really, as you can imagine, shocking news for me. I knew nothing about cancer. In Western cultures, when you have cancer, it's as if you disappear in a way. Your life as a complex human being is replaced by medical data: Your images, your exams, your lab values, a list of medicines. And everyone changes as well. You suddenly become a disease on legs. Doctors start speaking a language which you don't understand. They start pointing their fingers at your body and your images. People start changing as well because they start dealing with the disease, instead of with the human being. They say, "What did the doctor say?" before even saying, "Hello."
Imati rak mozga je bila stvarno, kao što možete zamisliti, šokantna vest za mene. Nisam znao ništa o raku. U zapadnim kulturama, kada imate rak, kao da nestajete na neki način. Vaš život složenog ljudskog bića zamenjen je medicinskim podacima: vašim nalazima, ispitivanjima, laboratorijskim vrednostima, listom lekova. I svi se takođe menjaju. Iznenada postajete hodajuća bolest. Doktori počinju da govore jezikom koji ne razumete. Počinju da upiru prstom na vaše telo i vaše nalaze. Ljudi takođe počinju da se menjaju zato što počinju da se bave bolešću umesto ljudskim bićem. Kažu: "Šta su rekli doktori?" pre nego što čak kažu "Zdravo".
And in the meanwhile, you're left with questions to which nobody gives an answer. These are the "Can I?" questions: Can I work while I have cancer? Can I study? Can I make love? Can I be creative? And you wonder, "What have I done to deserve this?" You wonder, "Can I change something about my lifestyle?" You wonder, "Can I do something? Are there any other options?"
A u međuvremenu, vi ste ostavljeni sa pitanjima na koja niko ne daje odgovor. Ovo su "Mogu li?" pitanja: Mogu li da radim dok imam rak? Mogu li da učim? Mogu li da vodim ljubav? Mogu li da budem kreativan? I pitate se: "Šta sam učinio da zaslužim ovo?" Pitate se: "Mogu li da promenim nešto u svom načinu života?" Pitate se: "Mogu li da uradim nešto? Da li postoje neke druge opcije?"
And, obviously, doctors are the good guys in all these scenarios, because they are very professional and dedicated to curing you. But they also are very used to having to deal with patients, so I'd say that they sometimes lose the idea that this is torture for you and that you become, literally, a patient -- "patient" means "the one who waits." (Laughter) Things are changing, but classically, they tend to not engage you in any way to learn about your condition, to get your friends and family engaged, or showing you ways in which you can change your lifestyle to minimize the risks of what you're going through. But instead, you're forced there to wait in the hands of a series of very professional strangers.
I, očigledno, doktori su dobri momci u svim ovim scenarijima, zato što su veoma profesionalni i posvećeni vašem izlečenju Ali oni su takođe veoma navikli da moraju da se bave pacijentima, tako da bih rekao da ponekad smetnu s uma da je ovo mučenje za vas i postajete, bukvalno, pacijent - "pacijent" znači "onaj koji čeka". (Smeh) Stvari se menjaju, ali najčešće, oni su skloni da vas ni na koji način ne podstaknu da saznate o svom stanju, da podstaknu vaše prijatelje i porodicu da se uključe, niti da vam pokažu načine da promenite stil života da umanjite rizike onoga kroz za šta prolazite. Umesto toga prinuđeni ste da čekate u rukama veoma profesionalnih stranaca.
While I was in the hospital, I asked for a printed-out picture of my cancer and I spoke with it. It was really hard to obtain, because it's not common practice to ask for a picture of your own cancer. I talked to it and I said, "Okay, cancer, you're not all there is to me. There's more to me. A cure, whichever it is, will have to deal with the whole of me." And so, the next day, I left the hospital against medical advice. I was determined to change my relationship with the cancer and I was determined to learn more about my cancer before doing anything as drastic as a surgery.
Dok sam bio u bolnici, tražio sam odštampanu sliku mog raka i razgovarao sam sa njim. Bilo je teško dobiti je, jer niije uobičajna praksa da tražite sliku sopstvenog raka. Pričao sam sa njim i rekao sam: "U redu, raku, ti nisi sve što sam ja. Postoji još delova mene. Lek, koji god da je, moraće da se bavi sa mnom celim." I tako sam, sledećeg dana, napustio bolnicu uprkos savetu doktora. Bio sam rešen da promenim svoj odnos sa rakom i bio sam rešen da naučim više o svom raku pre nego što uradim bilo šta drastično poput operacije.
I'm an artist, I use several forms of open-source technologies and open information in my practice. So my best bet was to get it all out there, get the information out there, and use it so that it could be accessed by anyone. So I created a website, which is called La Cura, on which I put my medical data, online. I actually had to hack it and that's a thing which we can talk about in another speech. (Laughter) I chose this word, La Cura -- La Cura in Italian means "the cure" -- because in many different cultures, the word "cure" can mean many different things. In our Western cultures, it means eradicating or reversing a disease, but in different cultures, for example, a culture from Asia, from the Mediterranean, from Latin countries, from Africa, it can mean many more things.
Ja sam umetnik, i koristim nekoliko oblika svima dostupnih tehnologija i informacija u svom radu. Pa je za mene najbolje bilo da sve stavim onlajn, da stavim informacije onlajn, i koristim ih tako da može svako da im pristupi. Tako sam napravio sajt, koji se zove La Cura, na koji sam stavio svoje medicinske podatke. Zapravo sam morao da ga hakujem i to je stvar o kojoj možemo da pričamo u drugom govoru. (Smeh) Izabrao sam ovu reč, La Cura - La Cura na italijanskom znači "lek" - zato što u različitim kulturama, reč "lek" može da znači mnogo različitih stvari. U našim zapadnim kulturama znači uništiti ili preokrenuti bolest, ali u drugim kulturama, na primer, kulturi iz Azije, Mediterana, latinskih zemalja, Afrike, može da znači još mnogo stvari.
Of course, I was interested in the opinions of doctors and healthcare providers, but I was also interested in the cure of the artist, of the poet, of the designer, of, who knows, the musicians. I was interested in the social cure, I was interested in the psychological cure, I was interested in the spiritual cure, I was interested in the emotional cure, I was interested in any form of cure.
Naravno, bio sam zainteresovan za mišljenja doktora i zdravstvenih radnika, ali sam takođe bio zainteresovan za lek umetnika, pesnika, dizajnera, ko zna, muzičara. Bio sam zainteresovan za društveni lek, bio sam zainteresovan za psihološki lek, bio sam zainteresovan za duhovni lek, bio sam zainteresovan za emotivni lek, bio sam zainteresovan za bilo koji vid leka.
And, it worked. The La Cura website went viral. I received lots of media attention from Italy and from abroad and I quickly received more than 500,000 contacts -- emails, social networking -- most of them were a suggestion on how to cure my cancer, but more of them were about how to cure myself as a full individual. For example, many thousands of videos, images, pictures, art performances were produced for La Cura. For example, here we see Francesca Fini in her performance. Or, as artist Patrick Lichty has done: He produced a 3D sculpture of my tumor and put it on sale on Thingiverse. Now you can have my cancer, too! (Laughter) Which is a nice thing, if you think about it, we can share our cancer.
I urodilo je plodom. Sajt La Cura je postao popularan na internetu. Dobio sam dosta pažnje medija iz Italije i inostranstva i ubrzo sam primio više od 500.000 kontakata - putem mejla, socijalnih mreža - većina njih su bili predlozi kako da izlečim rak, ali više njih su bili predlozi kako da izlečim sebe, kao celovitog pojedinca. Na primer, više hiljada video snimaka, fotografija, slika, umetničkih nastupa napravljeno je za La Cura-u. Na primer, ovde vidimo Frančesku Fini u svom performansu. Ili, kao što je umetnik Patrik Lihti učinio: On je napravio 3D skulpturu mog tumora i stavio je na prodaju na Tingivers. Sada i vi takođe možete imati moj rak! (Smeh) Što je lepo, ako razmislite o tome, možemo da delimo naš rak.
And this was going on -- scientists, the traditional medicine experts, several researchers, doctors -- all connected with me to give advice. With all this information and support, I was able to form a team of several neurosurgeons, traditional doctors, oncologists, and several hundred volunteers with whom I was able to discuss the information I was receiving, which is very important. And together, we were able to form a strategy for my own cure in many languages, according to many cultures. And the current strategy spans the whole world and thousands of years of human history, which is quite remarkable for me. [Surgery]
I dešavalo se da su - naučnici, eksperti tradicionalne medicine, nekoliko istraživača, doktori - svi bili povezani sa mnom da bi dali savet. Sa svim tim informacijama i podrškom, uspeo sam da formiram tim od nekoliko neurohirurga doktora tradicionalne medicine, onkologa, i nekoliko stotina volontera sa kojima sam mogao da razgovaram o informacijama koje sam dobijao, što je veoma važno. I zajedno bili smo u stanju da napravimo strategiju mog izlečenja na mnogo jezika, u skladu sa mnogim kulturama. I trenutna strategija povezuje ceo svet i hiljade godina ljudske istorije, što je za mene prilično izuzetno. [Operacija]
The follow-up MRIs showed, luckily, little to no growth of the cancer. So I was able to take my time and choose. I chose the doctor I wanted to work with, I chose the hospital I wanted to stay in, and in the meanwhile, I was supported by thousands of people, none of whom felt pity for me. Everyone felt like they could take an active role in helping me to get well, and this was the most important part of La Cura.
Srećom, snimci magnetne rezonance nakon operacije pokazali su mali, odnosno nikakav rast tumora. Tako da sam mogao da izdvojim vreme i izaberem. Izabrao sam doktora sa kojim sam želeo da radim, izabrao sam bolnicu u kojoj sam želeo da budem, a u međuvremenu, hiljade ljudi su me podržale, od kojih me niko nije sažaljevao. Svi su osećali da mogu da preuzmu aktivnu ulogu u pomaganju da ozdravim, i ovo je bila najbitnija uloga La Cura-e.
What are the outcomes? I'm fine, as you can see, pretty fine. (Applause) I had excellent news after the surgery -- I have -- I had a very low-grade glioma, which is a "good" kind of cancer which doesn't grow a lot. I have completely changed my life and my lifestyle. Everything I did was thoughtfully designed to get me engaged.
Šta su ishodi? Dobro sam, kao što možete da vidite, dosta dobro. (Aplauz) Nakon operacije, čuo sam dobre vesti - imam - imao sam gliome veoma niskog stepena što je "dobra" vrsta raka koja ne raste puno. Potpuno sam promenio svoj život i stil života. Sve što sam uradio bilo je smišljeno napravljeno da bi me uključilo.
Up until the very last few minutes of the surgery, which was very intense, a matrix of electrodes was implanted in my brain from this side, to be able to build a functional map of what the brain controls. And right before the operation, we were able to discuss the functional map of my brain with the doctor, to understand which risks I was running into and if there were any I wanted to avoid. Obviously, there were. [Open]
Sve do poslednjih nekoliko minuta operacije, koja je bila veoma intenzivna, matriks elektroda bio je implantovan u moj mozak, sa ove strane, kako bi se napravila funkcionalna mapa onoga što mozak kontroliše. I neposredno pre operacije mogli smo da razgovaramo o funkcionalnoj mapi moga mozga sa doktorom, kako bismo razumeli rizike sa kojima sam se suočavao i da li su postojali neki koje sam želeo da izbegnem. Naravno, bilo ih je. [Otvoren]
And this openness was really the fundamental part of La Cura. Thousands of people shared their stories, their experiences. Doctors got to talk with people they don't usually consult when they think about cancer. I'm a self-founding, continuous state of translation among many different languages, in which science meets emotion and conventional research meets traditional research. [Society]
I ova otvorenost je bila stvarno bitan deo La Cura-e. Hiljade ljudi su podelili svoje priče, svoja iskustva. Doktori su dobili priliku da pričaju sa ljudima koje obično ne konsultuju kada razmišljaju o raku. Ja sam samouspostavljeno, kontinuirano stanje prevoda među mnogo različitih jezika, u kome se sreću nauka i emocija i u kome se sreću konvencionalno i tradicionalno istraživanje. [Društvo]
The most important thing of La Cura was to feel like a part of a really engaged and connected society whose wellness really depends on the wellness of all of its components. This global performance is my open-source cure for cancer. And from what I feel, it's a cure for me, but for us all.
Najbitnija stvar kod La Cura-e bila je osećati se kao deo stvarno uključenog i povezanog društva čija dobrobit stvarno zavisi od dobrobiti njegovih delova. Ovaj globalni performans je moj svima dostupan lek za rak. I osećam da je to lek ne samo za mene, već za sve nas.
Thank you.
Hvala vam.
(Applause).
(Aplauz)