Billedet her bag mig, var min hjernekræft. Er den ikke bare flot? (Latter) Nøgleordet her er, "var" min hjernekræft puha... (Bifald)
This back here was my brain cancer. Isn't it nice? (Laughter) The key phrase is "was," phew. (Applause)
Det at have hjernekræft var virkelig, som du kan forestille dig chokerende nyheder for mig. Jeg vidste ingenting omkring kræft. Når du har kræft i vestlige kulturer, er det lidt som om du forsvinder. Dit liv som et komplekst menneske bliver erstattet med data: Dine røntgenbilleder, undersøgelser dine laboratorieprøver en liste af din medicinering. Og alle omkring dig ændrer sig. Du bliver pludselig en sygdom på to ben. Dine læger begynder at snakke et sprog du ikke rigtig forstår. De peger fingre, af din krop og dine røntgenbilleder. Folk begynder også at ændrer sig fordi de begynder at arbejde med sygdommen, istedet for mennesket. De siger, "Hvad sagde lægen?" før de endda siger, "Hallo."
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."
Og i mellemtiden, sidder du tilbage med alle disse spørgsmål som ingen giver dig svaret til. Den slags spørgsmål der siger, "Hvad kan jeg?" Kan jeg arbejder mens jeg har kræft? Kan jeg studere? Kan jeg have samleje? Kan jeg være kreativ? Og du begynder at tænke, "Hvad har jeg gjort for at fortjene det her?" Du tænker, "Kan jeg ændre nogen ting i min tilværelse?" Du tænker, "Kan jeg gøre noget som helst? Er der nogle andre muligheder?"
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?"
Lægerne er selvfølgelig "the good guys" i disse scenarier, fordi de er jo professionelle and dedikeret til at helbrede dig. Men de er også utrolig vante til at arbejde med patienter, hvilket betyder de ind imellem glemmer at dette er rent tortur for dig og at du helt literalt bliver, en patient - "patient" betyder "den som venter". (Latter) Tingene er ved at ændre sig, men historisk, så har de en tendens til ikke at give dig noget indsigt ind til din tilstand, få dine venner og familie involveret, eller vise dig nogle måder du kan ændre din livsstil for at reducere den risiko du går igennem. Men istedet er du tvunget til at vente i hænderne på adskillige meget professionelle fremmede.
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.
Mens jeg var på hospitalet, spurgte jeg efter en printet kopi af min kræft og jeg snakkede med den. Det var utrolig svært at få fat på i øvrigt, da det var ikke normal praksis at bede om et billede af din kræft. Jeg snakkede med den og sagde, "Okay kræft, jeg er mere end bare dig. Jeg har mere i mig end dig." En kur hvad enten den er, skal håndtere hele min person. Den næste dag, forlod jeg hospitalet imod deres anbefaling. Jeg havde besluttet at ændre mit forhold med min kræft og ville målbevidst lære mere om min kræft før jeg ville gå igennem noget så drastisk som en operation.
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.
Jeg er en kunster og bruger flere forskellige Open Source-teknologier og tilgængelig information i mit erhverv. Så mit bedste bud var at få det hele ud af døren, få dataen ud i verdenen og bruge det på den måde at alle kunne få adgang til det. Jeg lavede en hjemmeside som blev kaldt La Cura, hvor jeg så gemte min medicinske optegnelser. Jeg var faktisk nødt til at "hacke" dataene, men det er en ting vi kan tale om i en anden samtale. (Latter) Jeg havde kaldt hjemmesiden La Cura. La Cura på Italiensk betyder "kuren"., fordi for mange forskellige kulturer har ordet "kur" en helt anden definition og betydning. I den Vestlige kultur, betyder "kur" udryddelsen eller afbrydelsen af en sygdom, men i andre kulturer, f.eks. det kunne være en kultur i Asien, Middelhavet, Latinamerika eller Afrika kan det have mange andre betydninger.
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.
Selvfølgelig var jeg interesseret i lægernes opfattelse og meninger fra udbydere af sundhedspleje, men jeg var også interesseret i kunstnerens kur, poetens kur, i designerens kur eller en musikers kur. Jeg var interesseret i den sociale kur og den psykologiske kur. Jeg var interesseret i den spirituelle kur. Jeg var interesseret i den følelsesmæssige kur. Fundamentalt var jeg interesseret i hvilken som helst kur.
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.
Og, det fungerede. La Cura hjemmesiden gik viral. Jeg modtog masser af interesse fra pressen fra Italien og udenlandsk og fik hurtig mere end 500,000 henvendelser fra emails, social media osv. Mange af dem var forslag på hvordan kræften kunne helbedres, men de fleste var mere omkring hvordan jeg kunne helbrede mig selv som et individ og person. F.eks. tusindvis af videoklip, billeder, fotografier, kunstfremvisninger blev produceret for La Cura. Her er et eksempel af Francesca Fini i hendes fremvisning. Et andet eksempel var Patrick Lichty, han lavede en 3D skulptur af min svulst og satte den op for salg på Thingiverse. Køb, nu kan du også have min kræft! (Latter) Hvilket er trøstende, hvis du tænker over det, vi kan dele vores kræft.
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.
Og det her blev større og større jeg hørte fra professorer, traditionelle medicinske eksperter, adskillige forskere, læger alle tog kontakt med mig for at give deres råd. Med al denne information og support var jeg istand til at samle et hold af adskillige neurokirurger, traditionelle doktorer, onkologer og mange hundrede frivillige med hvem jeg kunne diskutere den information jeg modtog, hvilket var utrolig vigtigt. Og sammen var vi istand til at formulere en strategi for min egen kur i mange forskellige sprog fra adskillige kulturer. Den nuværende strategi omfatter nu hele verden og årevis af fælles historie hvilket er helt bemærkelsesværdigt for mig. [Operationen]
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]
Min efterfølgende MRI viste, heldigvis, lidt til ingen vækst af min kræft. Så jeg var istand til at tage min tid før operationen Jeg valgte den doktor, jeg ville arbejde med. Jeg valgte det hospital, jeg havde mest lyst til. Alt imens jeg blev supporteret af tusindvis af folk, men ingen som følte medlidenhed. Alle havde en klar følelse af at de tog en aktiv rolle i at hjælpe mig med at få det bedre og dette var den mest vigtigste del af La Cura.
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.
Hvad er resultaterne? Jeg har det godt, som i kan se, ret godt. (Bifald) Jeg har haft fantastiske nyheder siden operationen. Jeg havde kun en lille ufarlig glioma hvilket er en "god" slags kræft hvilket ikke vokser meget. Jeg har fuldstændig ændret mit liv og min livsstil. Alting fra La Cura var designet med omtanke for at have mig engageret
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.
helt indtil de helt sidste minutter af min operation, hvilket var meget intens. En matrix af elektroder var implanteret i min hjerne, i denne side, for at bygge et funktionelt kort op af hvordan min hjerne reagerede. Og op indtil kun sekunder før operationen var vi i stand til at diskutere dette funktionelle kort af min hjerne, med lægerne, for at forstå hvilken risko jeg var ude i og hvis der var nogle risici jeg gerne ville undgå.
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.
Selvfølgelig, var der det. [Åbenhed] Denne åbenhed var virkelig den fundamentale del af La Cura. Tusindvis af folk delte deres historier, deres erfaringer. Læger fik en chance for at snakke med folk de ikke typisk konsultere når de tænker på og arbejder med kræft. Jeg ser mig selv som en autonom stiftelse, en løbende tilstand af oversættelse blandt mange forskellige sprog, hvor videnskab møder sindsbevægelser
Obviously, there were. [Open] 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
og konventionel forskning møder traditionel forskning.
and conventional research meets traditional research.
[Samfund] Et andet meget vigtig element af La Cura var at føle sig som en del af et utrolig engageret og tilsluttet samfund hvis velvære var afhængig af velværet af alle dets komponenter. Denne globale orkestrering er min Open-Source kur for kræft,
[Society] 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.
Og som jeg føler det,
And from what I feel,
er det ikke blot en kur for mig, men for os alle. Tak skal i have. (Bifald)
it's a cure for me, but for us all. Thank you. (Applause).