This back here was my brain cancer. Isn't it nice? (Laughter) The key phrase is "was," phew. (Applause)
Este de aquí atrás foi o meu cáncer cerebral. É bonito, non si? (Risas) Aquí a palabra clave é "foi". Ufff! (Aplausos)
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."
Ter cáncer cerebral foi, como podedes imaxinar, unha noticia moi impactante para min. Non sabía nada sobre o cáncer. Nas culturas occidentais, cando tes cáncer, [Desaparecer] é, dalgún xeito, coma se desapareceras. A vida, a dun ser humano complexo, é substituída por datos médicos: as túas radiografías, os exames médicos, os resultados de laboratorio, a lista de medicinas... [TODO] E todo o mundo cambia tamén. De súpeto convérteste nunha enfermidade con patas. Os médicos comezan a falar un idioma que ti non entendes. Empezan a sinalar co dedo o teu corpo e as túas radiografías. A xente comeza a cambiar tamén porque empezan a tratar coa enfermidade en vez de coa persoa. Preguntan: "Que che dixo o médico?" incluso antes de dicir "Ola". [PREGUNTAS]
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?"
Mentres tanto, déixante con preguntas para as que ninguén ten resposta. Preguntas do tipo "Son quen de...?" Son quen de traballar con cáncer? Son quen de estudar? De facer o amor? De ser creativo? Pregúntaste: "Que fixen eu para merecer isto?" Pregúntaste: "Podo cambiar algo no meu estilo de vida?" Pregúntaste: "Hai algo que poida facer? Hai algunha outra opción?" [Hai algo que poida facer?]
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.
E, claro está, os médicos son os tipos bos en todos estes casos, porque son moi profesionais e comprometidos con curarte. Pero tamén están moi acostumados a tratar con pacientes, polo que eu diría que ás veces perden a perspectiva de que para ti é unha tortura e de que te convertes, literalmente, nun paciente. "Paciente" significa "o que espera". (Risas) As cousas están cambiando pero o típico é que eviten implicarse de ningún xeito en coñecer a túa situación, en facer partícipes á túa familia e amigos ou en ensinarche algún xeito de modificar o teu estilo de vida para minimizar os riscos do que estás a pasar. Pero con todo, veste obrigado a agardar nas mans dunha serie de estraños moi profesionais. [AGARDAR]
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.
Mentres estaba no hospital, pedín que me imprimiran a radiografía do meu cáncer e falei con el. Foi moi difícil conseguilo, porque non é moi habitual pedir unha foto do teu propio cáncer. Falei con el e díxenlle: "Moi ben, cáncer, ti non me representas. Eu son máis que isto. A cura, sexa cal sexa, terá que enfrontarse a todo o meu ser." Así que ao día seguinte marchei do hospital malia a recomendación médica. Estaba decidido a cambiar a miña relación co cáncer e estaba decidido a aprender máis sobre el antes de facer algo tan drástico como unha cirurxía.
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.
Son artista, uso varios tipos de tecnoloxías de código aberto e información aberta no meu traballo. Polo que a miña grande aposta foi divulgar todo, divulgar a información, e facelo de tal forma que calquera puidese acceder a ela. Así, creei un sitio web chamado "La Cura", onde publiquei os meus datos médicos na rede. En realidade tiven que piratealos pero dese tema podemos falar noutra charla. (Risas) Elixín esta palabra, "La Cura", porque en italiano significa "curación" e porque en moitas culturas diferentes, a palabra "curación" pode ter moitos significados. Na nosa cultura occidental significa erradicar ou facer retroceder á enfermidade, pero noutras culturas distintas como por exemplo as de Asia, do Mediterráneo, dos países latinos ou de África, pode representar moitas outras cousas.
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.
Por suposto que me interesaba a opinión dos médicos e do resto de profesionais da saúde, pero tamén me interesaba a curación proposta polo artista, polo poeta, polo deseñador, ou, por que non, polos músicos. Interesábame a curación social, interesábame a curación psicolóxica, interesábame a curación espiritual, interesábame a curación emocional, interesábame todo tipo de curación.
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.
E funcionou. O sitio "La Cura" deu a volta ao mundo. Recibín moita atención mediática de Italia e do estranxeiro e máis de 500.000 persoas contactaron comigo en moi pouco tempo a través de correos, redes sociais... A maioría eran consellos de como curar o meu cáncer, pero moitos máis eran sobre como curarme a min mesmo como persoa. Por exemplo, creáronse miles de vídeos, imaxes, fotos e representacións artísticas para La Cura. Temos aquí o exemplo de Francesca Fini e a súa actuación. Ou o que fixo o artista Patrick Lichty: Elaborou unha escultura en 3D do meu tumor e púxoa á venta en Thingiverse. Agora vós tamén podedes ter o meu cáncer! (Risas) Se o pensades é algo xenial, podemos compartir o mesmo cáncer.
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]
E isto era o que estaba a ocorrer: científicos, expertos en medicina tradicional, diversos investigadores, médicos... Todos estaban conectados comigo para aconsellarme. Tendo toda esta información e apoio, fun quen de reunir a un equipo de neurocirurxiáns, médicos tradicionais, oncólogos e varios centos de voluntarios cos que puiden falar sobre a información que ía recibindo, o que é moi importante. Xuntos, conseguimos formular unha estratexia da miña propia curación en distintos idiomas e conforme a distintas culturas. Así, a estratexia actual abrangue o mundo enteiro e miles de anos de historia humana, cousa que atopo bastante impresionante. [Cirurxía]
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.
Por sorte, nas resonancias seguintes viuse pouco ou ningún crecemento do cáncer. Polo que puiden tomar o meu tempo para elixir. Elixín o médico co que quería traballar, elixín o hospital no que quería estar, e todo mentres miles de persoas me apoiaban sen sentir pena por min. Todo o mundo sentía que podía ser de utilidade axudándome a recuperarme, e esta foi a parte máis importante de La Cura.
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.
Cales foron os resultados? Estou ben, como podedes ver, moi ben. (Aplausos) Recibín excelentes noticias despois da cirurxía: teño --vaia, tiña-- un glioma de moi baixo grao, que é un tipo de cáncer "bo" que non crece moito. Cambiei totalmente a miña vida e o meu estilo de vida. Todo o que fixen foi deseñado para manterme implicado.
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]
[IMPLICADO] Xusto ata minutos antes da cirurxía, que foi moi intensa, tiña unha rede de eléctrodos conectados ao meu cerebro neste lado, para poder construír un mapa funcional do que o cerebro controla. E xusto antes da operación, puidemos analizar este mapa co médico para entender os riscos que ía correr e se había algún que me gustaría evitar. Obviamente, habíaos. [Abrirse]
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]
Esta apertura foi a verdadeira clave de La Cura. Milleiros de persoas compartiron as súas historias, as súas experiencias. Os médicos chegaron a falar con xente á que habitualmente non consultarían cando se trata de cáncer. Creeime a min mesmo, estou nun estado continuo de tradución entre moitas linguaxes diferentes, onde a ciencia se atopa coa emoción e a investigación convencional coa tradicional. [SOCIEDADE]
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.
O punto clave de La Cura foi sentirme parte dunha sociedade verdadeiramente comprometida e conectada, cuxo benestar global depende do de cada un dos seus individuos. Esta actuación mundial é a miña curación de código aberto para o cáncer. [CURACIÓN DE CÓDIGO ABERTO] E tal e como o sinto eu,
Thank you.
é unha curación para min, pero tamén para todos nós. Grazas.
(Applause).
(Aplausos)