This back here was my brain cancer. Isn't it nice? (Laughter) The key phrase is "was," phew. (Applause)
Ovo tu bio je moj rak na mozgu. Nije li lijep? (Smijeh) Ključna je riječ „bio“. Uh! (Pljesak)
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."
To da imam rak na mozgu bila je, kao što možete pretpostaviti šokantna vijest za mene. Ništa nisam znao o raku. Kada imate rak, u zapadnjačkim kulturama, na neki način, nestajete. Vaš život kao složenog ljudskog bića zamijene medicinski podaci: slike, testovi, laboratorijske vrijednosti, popis lijekova. I svi se oko vas promijene. Odjednom postanete hodajuća bolest. Liječnici počnu govoriti jezikom koji ne razumijete. Upiru prstom u vaše tijelo i slike. I ljudi se počnu mijenjati jer se počnu baviti bolešću umjesto ljudskim bićem. Pitaju što je rekao liječnik čak i prije nego pozdrave.
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 imate pitanja na koja vam nitko ne daje odgovore. To su „Mogu li“ pitanja: Mogu li raditi dok imam rak? Mogu li učiti? Mogu li voditi ljubav? Mogu li biti kreativan? I pitate se što ste učinili da vam se to dogodi. Pitate se možete li promijeniti svoj način života. Pitate se možete li štogod učiniti, postoji li koja druga mogućnost.
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, naravno, liječnici su u čitavoj toj priči pozitivci zato što su vrlo profesionalni i posvećeni vašem liječenju. Ali, također, oni su naviknuli nositi se s pacijentima tako da mislim da ponekad ne shvaćaju da je to za vas mučenje i da doslovno postajete pacijent, u smislu „onaj koji čeka“. (Smijeh) Stvari se mijenjaju, ali kao i obično, ni na koji vas način ne upućuju u vaše stanje. kao ni vaše prijatelje i obitelj, niti vas savjetuju kako promijeniti način života kako biste smanjili rizik onoga kroz što prolazite. Umjesto toga, prisiljeni ste čekati u rukama vrlo ozbiljnih 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.
Kada sam bio u bolnici, tražio sam izrađenu sliku raka i razgovarao sam s njim. Bilo ju je vrlo teško dobiti jer nije uobičajeno tražiti sliku vlastitog raka. Razgovarao sam s njim i rekao: „Ok, raku, ti ne predstavljaš sve što ja jesam. Više sam od toga. Lijek, kakav god on bio, morat će se nositi sa mnom u cijelosti.“ I tako sam sutradan, unatoč savjetima liječnika, napustio bolnicu. Odlučio sam promijeniti svoj odnos s rakom i odlučio sam naučiti više o njemu prije poduzimanja drastičnih mjera, kao što je operacija.
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.
Umjetnik sam i koristim nekoliko oblika open-source tehnologija i otvorenih informacija. Najbolja prilika bila mi je da prikupim sve informacije i koristim ih tako da svima budu dostupne. Napravio sam web stranicu La Cura na koju sam postavio svoje medicinske podatke. Morao sam ih ukrasti, ali to je nešto o čemu možemo pričati u nekom drugom govoru. (Smijeh) Izabrao sam tu riječ, La Cura što na talijanskom znači lijek jer u različitim kulturama „lijek“ može značiti različite stvari. U našim zapadnjačkim kulturama znači iskorjenjivanje ili poništavanje bolesti, ali u različitim kulturama, na primjer, azijskoj, mediteranskoj, latinsko-američkoj, afričkoj može imati više značenja.
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, zanimalo me mišljenje liječnika i zdravstvenih djelatnika, ali i lijek umjetnika, pjesnika, dizajnera, od, tko zna, glazbenika. Zanimao me društveni lijek, psihološki lijek, duhovni lijek, emocionalni lijek, zanimao me bilo koji oblik lijeka.
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 upalilo je. La Cura stranica postala je hit. Imao sam veliku medijsku pažnju iz Italije i inozemstva i ubrzo dobio više od 500 000 kontakata- e-mailovi, društvene mreže - većina su bili prijedlozi kako izliječiti moj rak, više ih je bilo o tome kako izliječiti samog sebe kao pojedinca. Na primjer, tisuće videa, prikaza, slika, umjetničkih izvedbi bilo je izrađeno za La Curu. Ovdje, na primjer, vidimo Francescu Fini u njenoj izvedbi. Ili, što je umjetnik Patrick Lichty učinio: 3D skulpturu mog tumora koju je stavio na prodaju na Thingivers. Sada i vi možete imati moj rak! (Smijeh) Što je zgodna stvar, ako razmislite o tome, možemo dijeliti rakove.
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 događalo se ovo - znanstvenici, tradicionalni medicinski stručnjaci, nekoliko istraživača, liječnici - svi povezani sa mnom da bi me savjetovali. Sa svim tim informacijama i potporom, formirao sam tim od nekoliko neurokirurga, tradicionalnih liječnika, onkologa, i nekoliko stotina volontera s kojima sam mogao raspravljati o informacijama koje sam primao, što je vrlo važno. A zajedno smo mogli izraditi strategiju za moje izlječenje na različitim jezicima, prema različitim kulturama. Trenutna strategija uključuje čitav svijet i tisuće godina ljudske povijesti, što je prilično izvanredno za mene. [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.
Iduća je MR snimka pokazala minimalno do nepostojeće širenje raka. Bio sam u mogućnosti uzeti vremena i izabrati. Izabrao sam liječnike s kojima sam htio raditi, bolnicu u kojoj sam htio ostati, a u međuvremenu me podržalo na tisuće ljudi, od kojih me nitko nije sažalijevao. Svi su se osjećali kao da mogu odigrati aktivnu ulogu i pomoći mi da ozdravim, a to je bio najvažniji dio La Cure.
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.
Koji su ishodi? Ja sam dobro, kao što vidite, prilično dobro. (Pljesak) Imam odlične vijesti: Nakon operacije- imam— imao sam vrlo nizak stupanj glioma, što je „dobra“ vrsta raka koja ne raste puno. Potupno sam promijenio svoj život i način života. Sve što sam radio bilo je osmišljeno kako bih se angažirao.
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 posljednjih nekoliko minuta operacije, koja je bila vrlo intenzivna, matrica elektroda bila je usađena u moj mozak od ove strane, kako bi se izradila funkcionalna mapa onoga što mozak kontrolira. Netom prije operacije mogli smo raspravljati o funkcionalnoj mapi mog mozga s liječnicima, kako bismo shvatili koje rizike prihvaćam i vidjeli postoje li neke koje želim izbjeći. Naravno, bilo ih je. [Otvori]
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]
Otvorenost je bila temeljni dio La Cure. Tisuće su ljudi su dijelili svoje priče, svoja iskustva. Liječnici su razgovarali s ljudima s kojima se inače ne savjetuju kada razmišljaju o raku. Samostalno sam osnovana trajna država prijevoda među različitim jezicima, u kojima znanost upoznaje osjećaje, a konvencionalno istraživanje upoznaje tradicionalno. [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.
Najvažniji dio La Cure je osjećaj da ste dio angažiranog i povezanog društva čija dobrobit zaista ovisi o dobrobiti svih njegovih sastavnica. Ova je globalna izvedba moj open-source lijek za rak. I, kako mi se čini, to je lijek za mene, ali i za sve nas.
Thank you.
Hvala.
(Applause).
(Pljesak).