WEBVTT 00:00:02.022 --> 00:00:05.315 This back here was my brain cancer. 00:00:07.125 --> 00:00:08.845 Isn't it nice? 00:00:08.869 --> 00:00:11.312 (Laughter) 00:00:11.336 --> 00:00:13.798 The key phrase is "was," 00:00:13.822 --> 00:00:15.457 phew. 00:00:15.481 --> 00:00:20.523 (Applause) NOTE Paragraph 00:00:20.547 --> 00:00:24.715 Having brain cancer was really, as you can imagine, 00:00:24.739 --> 00:00:26.591 shocking news for me. 00:00:26.615 --> 00:00:28.984 I knew nothing about cancer. 00:00:30.059 --> 00:00:33.870 In Western cultures, when you have cancer, 00:00:33.894 --> 00:00:36.102 it's as if you disappear in a way. 00:00:36.509 --> 00:00:43.123 Your life as a complex human being is replaced by medical data: 00:00:43.147 --> 00:00:49.234 Your images, your exams, your lab values, 00:00:49.258 --> 00:00:50.933 a list of medicines. 00:00:51.740 --> 00:00:53.734 And everyone changes as well. 00:00:54.439 --> 00:00:56.795 You suddenly become a disease on legs. 00:00:57.384 --> 00:01:01.488 Doctors start speaking a language which you don't understand. 00:01:01.983 --> 00:01:07.313 They start pointing their fingers 00:01:07.337 --> 00:01:11.484 at your body and your images. 00:01:12.187 --> 00:01:15.210 People start changing as well 00:01:15.234 --> 00:01:19.076 because they start dealing with the disease, 00:01:19.100 --> 00:01:21.435 instead of with the human being. 00:01:21.459 --> 00:01:23.620 They say, "What did the doctor say?" 00:01:23.644 --> 00:01:26.048 before even saying, "Hello." NOTE Paragraph 00:01:27.976 --> 00:01:29.899 And in the meanwhile, 00:01:29.923 --> 00:01:35.089 you're left with questions to which nobody gives an answer. 00:01:35.113 --> 00:01:37.864 These are the "Can I?" questions: 00:01:37.888 --> 00:01:39.883 Can I work while I have cancer? 00:01:40.507 --> 00:01:45.054 Can I study? Can I make love? Can I be creative? 00:01:45.864 --> 00:01:49.318 And you wonder, "What have I done to deserve this?" 00:01:49.342 --> 00:01:53.476 You wonder, "Can I change something about my lifestyle?" 00:01:53.500 --> 00:01:56.174 You wonder, "Can I do something? 00:01:56.198 --> 00:01:58.293 Are there any other options?" NOTE Paragraph 00:02:00.333 --> 00:02:05.964 And, obviously, doctors are the good guys in all these scenarios, 00:02:05.988 --> 00:02:11.910 because they are very professional and dedicated to curing you. 00:02:11.934 --> 00:02:17.168 But they also are very used to having to deal with patients, 00:02:17.192 --> 00:02:24.124 so I'd say that they sometimes lose the idea that this is torture for you 00:02:24.148 --> 00:02:29.079 and that you become, literally, a patient -- 00:02:29.103 --> 00:02:31.514 "patient" means "the one who waits." 00:02:31.538 --> 00:02:32.931 (Laughter) 00:02:32.955 --> 00:02:37.144 Things are changing, but classically, 00:02:37.168 --> 00:02:42.817 they tend to not engage you in any way to learn about your condition, 00:02:42.841 --> 00:02:46.964 to get your friends and family engaged, 00:02:46.988 --> 00:02:50.728 or showing you ways in which you can change your lifestyle 00:02:50.752 --> 00:02:53.142 to minimize the risks of what you're going through. 00:02:54.083 --> 00:02:57.947 But instead, you're forced there to wait 00:02:57.971 --> 00:03:02.992 in the hands of a series of very professional strangers. NOTE Paragraph 00:03:04.815 --> 00:03:06.890 While I was in the hospital, 00:03:06.914 --> 00:03:10.332 I asked for a printed-out picture of my cancer 00:03:10.356 --> 00:03:12.415 and I spoke with it. 00:03:13.120 --> 00:03:15.318 It was really hard to obtain, 00:03:15.342 --> 00:03:20.270 because it's not common practice to ask for a picture of your own cancer. 00:03:20.294 --> 00:03:22.059 I talked to it and I said, 00:03:22.083 --> 00:03:26.611 "Okay, cancer, you're not all there is to me. 00:03:26.635 --> 00:03:28.623 There's more to me. 00:03:28.647 --> 00:03:35.062 A cure, whichever it is, will have to deal with the whole of me." 00:03:35.086 --> 00:03:41.000 And so, the next day, I left the hospital against medical advice. 00:03:41.024 --> 00:03:45.592 I was determined to change my relationship with the cancer 00:03:45.616 --> 00:03:48.460 and I was determined to learn more about my cancer 00:03:48.484 --> 00:03:52.053 before doing anything as drastic as a surgery. NOTE Paragraph 00:03:54.037 --> 00:04:00.927 I'm an artist, I use several forms of open-source technologies 00:04:00.951 --> 00:04:03.470 and open information in my practice. 00:04:03.494 --> 00:04:09.581 So my best bet was to get it all out there, get the information out there, 00:04:09.605 --> 00:04:15.192 and use it so that it could be accessed by anyone. 00:04:16.269 --> 00:04:20.222 So I created a website, which is called La Cura, 00:04:20.246 --> 00:04:23.374 on which I put my medical data, online. 00:04:23.398 --> 00:04:25.271 I actually had to hack it 00:04:25.295 --> 00:04:29.451 and that's a thing which we can talk about in another speech. 00:04:29.475 --> 00:04:30.798 (Laughter) 00:04:30.822 --> 00:04:33.379 I chose this word, La Cura -- 00:04:33.403 --> 00:04:35.738 La Cura in Italian means "the cure" -- 00:04:35.762 --> 00:04:38.490 because in many different cultures, 00:04:38.514 --> 00:04:42.621 the word "cure" can mean many different things. 00:04:43.066 --> 00:04:44.725 In our Western cultures, 00:04:44.749 --> 00:04:49.218 it means eradicating or reversing a disease, 00:04:49.242 --> 00:04:50.746 but in different cultures, 00:04:50.770 --> 00:04:54.326 for example, a culture from Asia, 00:04:54.350 --> 00:04:58.462 from the Mediterranean, from Latin countries, from Africa, 00:04:58.486 --> 00:05:00.209 it can mean many more things. NOTE Paragraph 00:05:00.628 --> 00:05:05.991 Of course, I was interested in the opinions of doctors 00:05:06.015 --> 00:05:08.240 and healthcare providers, 00:05:08.264 --> 00:05:14.235 but I was also interested in the cure of the artist, of the poet, 00:05:14.259 --> 00:05:16.412 of the designer, 00:05:16.436 --> 00:05:20.356 of, who knows, the musicians. 00:05:20.889 --> 00:05:23.765 I was interested in the social cure, 00:05:23.789 --> 00:05:26.463 I was interested in the psychological cure, 00:05:26.487 --> 00:05:28.977 I was interested in the spiritual cure, 00:05:29.001 --> 00:05:32.035 I was interested in the emotional cure, 00:05:32.059 --> 00:05:34.857 I was interested in any form of cure. NOTE Paragraph 00:05:36.920 --> 00:05:40.592 And, it worked. 00:05:40.616 --> 00:05:43.945 The La Cura website went viral. 00:05:43.969 --> 00:05:48.670 I received lots of media attention from Italy and from abroad 00:05:48.694 --> 00:05:54.416 and I quickly received more than 500,000 contacts -- 00:05:54.440 --> 00:05:56.354 emails, social networking -- 00:05:56.378 --> 00:05:59.549 most of them were a suggestion on how to cure my cancer, 00:05:59.573 --> 00:06:02.980 but more of them were about how to cure myself 00:06:03.004 --> 00:06:05.319 as a full individual. 00:06:06.283 --> 00:06:10.341 For example, many thousands of videos, 00:06:10.365 --> 00:06:14.295 images, pictures, art performances 00:06:14.319 --> 00:06:16.008 were produced for La Cura. 00:06:16.756 --> 00:06:20.030 For example, here we see Francesca Fini in her performance. 00:06:21.141 --> 00:06:25.498 Or, as artist Patrick Lichty has done: 00:06:25.522 --> 00:06:30.076 He produced a 3D sculpture of my tumor 00:06:30.100 --> 00:06:32.797 and put it on sale on Thingiverse. 00:06:32.821 --> 00:06:35.020 Now you can have my cancer, too! 00:06:35.044 --> 00:06:37.557 (Laughter) 00:06:37.581 --> 00:06:40.974 Which is a nice thing, if you think about it, 00:06:40.998 --> 00:06:42.782 we can share our cancer. NOTE Paragraph 00:06:44.234 --> 00:06:46.609 And this was going on -- 00:06:46.633 --> 00:06:49.994 scientists, the traditional medicine experts, 00:06:50.018 --> 00:06:51.681 several researchers, doctors -- 00:06:51.705 --> 00:06:54.377 all connected with me to give advice. 00:06:54.401 --> 00:06:56.296 With all this information and support, 00:06:56.320 --> 00:07:01.985 I was able to form a team of several neurosurgeons, 00:07:02.009 --> 00:07:04.971 traditional doctors, 00:07:04.995 --> 00:07:11.120 oncologists, and several hundred volunteers 00:07:11.144 --> 00:07:14.349 with whom I was able to discuss 00:07:14.373 --> 00:07:19.772 the information I was receiving, which is very important. 00:07:19.796 --> 00:07:26.141 And together, we were able to form a strategy for my own cure 00:07:26.165 --> 00:07:29.792 in many languages, according to many cultures. 00:07:29.816 --> 00:07:32.981 And the current strategy spans the whole world 00:07:33.005 --> 00:07:35.603 and thousands of years of human history, 00:07:35.627 --> 00:07:37.686 which is quite remarkable for me. 00:07:37.710 --> 00:07:39.370 [Surgery] NOTE Paragraph 00:07:39.394 --> 00:07:44.323 The follow-up MRIs showed, luckily, little to no growth of the cancer. 00:07:45.005 --> 00:07:48.402 So I was able to take my time and choose. 00:07:48.426 --> 00:07:52.067 I chose the doctor I wanted to work with, 00:07:52.091 --> 00:07:54.465 I chose the hospital I wanted to stay in, 00:07:54.489 --> 00:07:58.476 and in the meanwhile, I was supported by thousands of people, 00:07:58.500 --> 00:08:01.727 none of whom felt pity for me. 00:08:01.751 --> 00:08:07.405 Everyone felt like they could take an active role 00:08:07.429 --> 00:08:09.241 in helping me to get well, 00:08:09.265 --> 00:08:12.630 and this was the most important part of La Cura. NOTE Paragraph 00:08:14.081 --> 00:08:15.283 What are the outcomes? 00:08:16.122 --> 00:08:18.455 I'm fine, as you can see, pretty fine. 00:08:18.479 --> 00:08:23.771 (Applause) 00:08:23.795 --> 00:08:26.203 I had excellent news 00:08:26.227 --> 00:08:27.833 after the surgery -- 00:08:27.857 --> 00:08:33.352 I have -- I had a very low-grade glioma, 00:08:33.376 --> 00:08:37.798 which is a "good" kind of cancer which doesn't grow a lot. 00:08:37.822 --> 00:08:41.275 I have completely changed my life and my lifestyle. 00:08:42.250 --> 00:08:47.375 Everything I did was thoughtfully designed to get me engaged. NOTE Paragraph 00:08:48.055 --> 00:08:52.171 Up until the very last few minutes of the surgery, 00:08:52.195 --> 00:08:54.162 which was very intense, 00:08:54.186 --> 00:08:58.107 a matrix of electrodes was implanted in my brain 00:08:58.131 --> 00:08:59.997 from this side, 00:09:00.021 --> 00:09:05.254 to be able to build a functional map of what the brain controls. 00:09:05.278 --> 00:09:08.952 And right before the operation, 00:09:08.976 --> 00:09:15.753 we were able to discuss the functional map of my brain 00:09:15.777 --> 00:09:20.660 with the doctor, to understand which risks I was running into 00:09:20.684 --> 00:09:24.288 and if there were any I wanted to avoid. 00:09:24.312 --> 00:09:26.428 Obviously, there were. 00:09:26.452 --> 00:09:27.505 [Open] NOTE Paragraph 00:09:27.529 --> 00:09:32.956 And this openness was really the fundamental part of La Cura. 00:09:32.980 --> 00:09:37.775 Thousands of people shared their stories, their experiences. 00:09:37.799 --> 00:09:42.403 Doctors got to talk with people they don't usually consult 00:09:42.427 --> 00:09:47.346 when they think about cancer. 00:09:47.370 --> 00:09:52.019 I'm a self-founding, continuous state of translation 00:09:52.043 --> 00:09:54.339 among many different languages, 00:09:54.363 --> 00:09:58.236 in which science meets emotion 00:09:58.260 --> 00:10:02.897 and conventional research meets traditional research. 00:10:02.921 --> 00:10:04.239 [Society] NOTE Paragraph 00:10:04.263 --> 00:10:09.610 The most important thing of La Cura 00:10:09.635 --> 00:10:16.635 was to feel like a part of a really engaged and connected society 00:10:16.660 --> 00:10:22.780 whose wellness really depends on the wellness of all of its components. 00:10:24.253 --> 00:10:28.853 This global performance is my open-source cure for cancer. 00:10:29.873 --> 00:10:31.655 And from what I feel, 00:10:31.679 --> 00:10:34.055 it's a cure for me, but for us all. NOTE Paragraph 00:10:34.079 --> 00:10:35.232 Thank you. NOTE Paragraph 00:10:35.256 --> 00:10:37.931 (Applause).