What happened when I open-sourced my brain cancer
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0:02 - 0:05This back here was my brain cancer.
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0:07 - 0:09Isn't it nice?
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0:09 - 0:11(Laughter)
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0:11 - 0:14The key phrase is "was,"
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0:14 - 0:15phew.
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0:15 - 0:21(Applause)
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0:21 - 0:25Having brain cancer was really,
as you can imagine, -
0:25 - 0:27shocking news for me.
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0:27 - 0:29I knew nothing about cancer.
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0:30 - 0:34In Western cultures, when you have cancer,
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0:34 - 0:36it's as if you disappear in a way.
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0:37 - 0:43Your life as a complex human being
is replaced by medical data: -
0:43 - 0:49Your images, your exams, your lab values,
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0:49 - 0:51a list of medicines.
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0:52 - 0:54And everyone changes as well.
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0:54 - 0:57You suddenly become a disease on legs.
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0:57 - 1:01Doctors start speaking a language
which you don't understand. -
1:02 - 1:07They start pointing their fingers
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1:07 - 1:11at your body and your images.
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1:12 - 1:15People start changing as well
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1:15 - 1:19because they start dealing
with the disease, -
1:19 - 1:21instead of with the human being.
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1:21 - 1:24They say, "What did the doctor say?"
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1:24 - 1:26before even saying, "Hello."
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1:28 - 1:30And in the meanwhile,
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1:30 - 1:35you're left with questions
to which nobody gives an answer. -
1:35 - 1:38These are the "Can I?" questions:
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1:38 - 1:40Can I work while I have cancer?
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1:41 - 1:45Can I study? Can I make love?
Can I be creative? -
1:46 - 1:49And you wonder, "What have I done
to deserve this?" -
1:49 - 1:53You wonder, "Can I change something
about my lifestyle?" -
1:54 - 1:56You wonder, "Can I do something?
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1:56 - 1:58Are there any other options?"
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2:00 - 2:06And, obviously, doctors are
the good guys in all these scenarios, -
2:06 - 2:12because they are very professional
and dedicated to curing you. -
2:12 - 2:17But they also are very used
to having to deal with patients, -
2:17 - 2:24so I'd say that they sometimes
lose the idea that this is torture for you -
2:24 - 2:29and that you become,
literally, a patient -- -
2:29 - 2:32"patient" means "the one who waits."
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2:32 - 2:33(Laughter)
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2:33 - 2:37Things are changing, but classically,
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2:37 - 2:43they tend to not engage you in any way
to learn about your condition, -
2:43 - 2:47to get your friends and family engaged,
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2:47 - 2:51or showing you ways
in which you can change your lifestyle -
2:51 - 2:53to minimize the risks
of what you're going through. -
2:54 - 2:58But instead, you're forced there to wait
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2:58 - 3:03in the hands of a series
of very professional strangers. -
3:05 - 3:07While I was in the hospital,
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3:07 - 3:10I asked for a printed-out
picture of my cancer -
3:10 - 3:12and I spoke with it.
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3:13 - 3:15It was really hard to obtain,
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3:15 - 3:20because it's not common practice
to ask for a picture of your own cancer. -
3:20 - 3:22I talked to it and I said,
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3:22 - 3:27"Okay, cancer,
you're not all there is to me. -
3:27 - 3:29There's more to me.
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3:29 - 3:35A cure, whichever it is, will have
to deal with the whole of me." -
3:35 - 3:41And so, the next day, I left the hospital
against medical advice. -
3:41 - 3:46I was determined to change
my relationship with the cancer -
3:46 - 3:48and I was determined
to learn more about my cancer -
3:48 - 3:52before doing anything
as drastic as a surgery. -
3:54 - 4:01I'm an artist, I use several forms
of open-source technologies -
4:01 - 4:03and open information in my practice.
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4:03 - 4:10So my best bet was to get it all
out there, get the information out there, -
4:10 - 4:15and use it so that it could be
accessed by anyone. -
4:16 - 4:20So I created a website,
which is called La Cura, -
4:20 - 4:23on which I put my medical data, online.
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4:23 - 4:25I actually had to hack it
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4:25 - 4:29and that's a thing which we
can talk about in another speech. -
4:29 - 4:31(Laughter)
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4:31 - 4:33I chose this word, La Cura --
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4:33 - 4:36La Cura in Italian means "the cure" --
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4:36 - 4:38because in many different cultures,
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4:39 - 4:43the word "cure" can mean
many different things. -
4:43 - 4:45In our Western cultures,
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4:45 - 4:49it means eradicating
or reversing a disease, -
4:49 - 4:51but in different cultures,
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4:51 - 4:54for example, a culture from Asia,
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4:54 - 4:58from the Mediterranean,
from Latin countries, from Africa, -
4:58 - 5:00it can mean many more things.
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5:01 - 5:06Of course, I was interested
in the opinions of doctors -
5:06 - 5:08and healthcare providers,
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5:08 - 5:14but I was also interested in
the cure of the artist, of the poet, -
5:14 - 5:16of the designer,
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5:16 - 5:20of, who knows, the musicians.
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5:21 - 5:24I was interested in the social cure,
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5:24 - 5:26I was interested in
the psychological cure, -
5:26 - 5:29I was interested in the spiritual cure,
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5:29 - 5:32I was interested in the emotional cure,
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5:32 - 5:35I was interested in any form of cure.
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5:37 - 5:41And, it worked.
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5:41 - 5:44The La Cura website went viral.
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5:44 - 5:49I received lots of media attention
from Italy and from abroad -
5:49 - 5:54and I quickly received
more than 500,000 contacts -- -
5:54 - 5:56emails, social networking --
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5:56 - 6:00most of them were a suggestion
on how to cure my cancer, -
6:00 - 6:03but more of them were about
how to cure myself -
6:03 - 6:05as a full individual.
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6:06 - 6:10For example, many thousands of videos,
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6:10 - 6:14images, pictures, art performances
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6:14 - 6:16were produced for La Cura.
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6:17 - 6:20For example, here we see
Francesca Fini in her performance. -
6:21 - 6:25Or, as artist Patrick Lichty has done:
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6:26 - 6:30He produced a 3D sculpture of my tumor
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6:30 - 6:33and put it on sale on Thingiverse.
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6:33 - 6:35Now you can have my cancer, too!
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6:35 - 6:38(Laughter)
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6:38 - 6:41Which is a nice thing,
if you think about it, -
6:41 - 6:43we can share our cancer.
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6:44 - 6:47And this was going on --
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6:47 - 6:50scientists, the traditional
medicine experts, -
6:50 - 6:52several researchers, doctors --
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6:52 - 6:54all connected with me to give advice.
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6:54 - 6:56With all this information and support,
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6:56 - 7:02I was able to form a team
of several neurosurgeons, -
7:02 - 7:05traditional doctors,
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7:05 - 7:11oncologists, and several
hundred volunteers -
7:11 - 7:14with whom I was able to discuss
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7:14 - 7:20the information I was receiving,
which is very important. -
7:20 - 7:26And together, we were able to form
a strategy for my own cure -
7:26 - 7:30in many languages,
according to many cultures. -
7:30 - 7:33And the current strategy
spans the whole world -
7:33 - 7:36and thousands of years of human history,
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7:36 - 7:38which is quite remarkable for me.
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7:38 - 7:39[Surgery]
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7:39 - 7:44The follow-up MRIs showed, luckily,
little to no growth of the cancer. -
7:45 - 7:48So I was able to take my time and choose.
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7:48 - 7:52I chose the doctor I wanted to work with,
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7:52 - 7:54I chose the hospital I wanted to stay in,
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7:54 - 7:58and in the meanwhile, I was supported
by thousands of people, -
7:58 - 8:02none of whom felt pity for me.
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8:02 - 8:07Everyone felt like they could
take an active role -
8:07 - 8:09in helping me to get well,
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8:09 - 8:13and this was the most important
part of La Cura. -
8:14 - 8:15What are the outcomes?
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8:16 - 8:18I'm fine, as you can see, pretty fine.
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8:18 - 8:24(Applause)
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8:24 - 8:26I had excellent news
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8:26 - 8:28after the surgery --
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8:28 - 8:33I have -- I had a very low-grade glioma,
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8:33 - 8:38which is a "good" kind of cancer
which doesn't grow a lot. -
8:38 - 8:41I have completely changed
my life and my lifestyle. -
8:42 - 8:47Everything I did was thoughtfully
designed to get me engaged. -
8:48 - 8:52Up until the very last few
minutes of the surgery, -
8:52 - 8:54which was very intense,
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8:54 - 8:58a matrix of electrodes
was implanted in my brain -
8:58 - 9:00from this side,
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9:00 - 9:05to be able to build a functional map
of what the brain controls. -
9:05 - 9:09And right before the operation,
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9:09 - 9:16we were able to discuss
the functional map of my brain -
9:16 - 9:21with the doctor, to understand
which risks I was running into -
9:21 - 9:24and if there were any I wanted to avoid.
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9:24 - 9:26Obviously, there were.
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9:26 - 9:28[Open]
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9:28 - 9:33And this openness was really
the fundamental part of La Cura. -
9:33 - 9:38Thousands of people shared
their stories, their experiences. -
9:38 - 9:42Doctors got to talk with people
they don't usually consult -
9:42 - 9:47when they think about cancer.
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9:47 - 9:52I'm a self-founding,
continuous state of translation -
9:52 - 9:54among many different languages,
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9:54 - 9:58in which science meets emotion
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9:58 - 10:03and conventional research
meets traditional research. -
10:03 - 10:04[Society]
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10:04 - 10:10The most important thing of La Cura
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10:10 - 10:17was to feel like a part
of a really engaged and connected society -
10:17 - 10:23whose wellness really depends
on the wellness of all of its components. -
10:24 - 10:29This global performance
is my open-source cure for cancer. -
10:30 - 10:32And from what I feel,
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10:32 - 10:34it's a cure for me, but for us all.
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10:34 - 10:35Thank you.
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10:35 - 10:38(Applause).
- Title:
- What happened when I open-sourced my brain cancer
- Speaker:
- Salvatore Iaconesi
- Description:
-
When artist Salvatore Iaconesi was diagnosed with brain cancer, he refused to be a passive patient — which, he points out, means "one who waits." So he hacked his brain scans, posted them online, and invited a global community to pitch in on a "cure." This sometimes meant medical advice, and it sometimes meant art, music, emotional support — from more than half a million people.
- Video Language:
- English
- Team:
- closed TED
- Project:
- TEDTalks
- Duration:
- 10:52
Brian Greene commented on English subtitles for What happened when I open-sourced my brain cancer | ||
Brian Greene edited English subtitles for What happened when I open-sourced my brain cancer | ||
Krystian Aparta edited English subtitles for What happened when I open-sourced my brain cancer | ||
Cynthia Betubiza edited English subtitles for What happened when I open-sourced my brain cancer | ||
Krystian Aparta approved English subtitles for What happened when I open-sourced my brain cancer | ||
Krystian Aparta edited English subtitles for What happened when I open-sourced my brain cancer | ||
Krystian Aparta edited English subtitles for What happened when I open-sourced my brain cancer | ||
Krystian Aparta edited English subtitles for What happened when I open-sourced my brain cancer |
Brian Greene
A correction was made to this transcript on 1/15/16.
At 8:24, the subtitle now reads: "I had excellent news after the surgery --"