TEDMED 2013
Salvatore Iaconesi: What happened when I open-sourced my brain cancer
Salvatore Iaconesi: Što se dogodilo kad sam podijelio priču o raku na mozgu
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Kad je umjetniku Salvatotru Iaconesiu dijagnosticiran rak na mozgu, odbio je biti pasivan pacijent – ''onaj koji čeka''. Uzeo je slike mozga, postavio ih online i pozvao globalnu zajednicu da mu pomognu naći lijek. To je ponekad uključivalo liječničke savjete, a ponekad umjetničku, glazbenu i emocionalnu podršku od više od pola milijuna ljudi.
Salvatore Iaconesi - Open-source engineer and artist
An artist, hacker and interaction designer, Salvatore Iaconesi embarked on a bold open-source project in 2012. Subject: his own brain cancer Full bio
An artist, hacker and interaction designer, Salvatore Iaconesi embarked on a bold open-source project in 2012. Subject: his own brain cancer Full bio
Double-click the English transcript below to play the video.
00:14
This back here was my brain cancer.
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Ovo tu bio je moj rak na mozgu.
00:19
Isn't it nice?
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Nije li lijep?
00:20
(Laughter)
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(Smijeh)
00:23
The key phrase is "was,"
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Ključna je riječ „bio“.
00:25
phew.
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Uh!
00:27
(Applause)
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(Pljesak)
00:32
Having brain cancer was really,
as you can imagine,
as you can imagine,
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To da imam rak na mozgu bila je,
kao što možete pretpostaviti
kao što možete pretpostaviti
00:36
shocking news for me.
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šokantna vijest za mene.
00:38
I knew nothing about cancer.
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Ništa nisam znao o raku.
00:42
In Western cultures, when you have cancer,
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Kada imate rak,
u zapadnjačkim kulturama,
u zapadnjačkim kulturama,
00:45
it's as if you disappear in a way.
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na neki način, nestajete.
00:48
Your life as a complex human being
is replaced by medical data:
is replaced by medical data:
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Vaš život kao složenog ljudskog bića
zamijene medicinski podaci:
zamijene medicinski podaci:
00:55
Your images, your exams, your lab values,
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slike, testovi,
laboratorijske vrijednosti,
laboratorijske vrijednosti,
01:01
a list of medicines.
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popis lijekova.
01:03
And everyone changes as well.
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I svi se oko vas promijene.
01:06
You suddenly become a disease on legs.
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Odjednom postanete hodajuća bolest.
01:09
Doctors start speaking a language
which you don't understand.
which you don't understand.
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Liječnici počnu govoriti jezikom
koji ne razumijete.
koji ne razumijete.
01:13
They start pointing their fingers
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Upiru prstom
01:19
at your body and your images.
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u vaše tijelo i slike.
01:24
People start changing as well
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I ljudi se počnu mijenjati
01:27
because they start dealing
with the disease,
with the disease,
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jer se počnu baviti bolešću
01:31
instead of with the human being.
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umjesto ljudskim bićem.
01:33
They say, "What did the doctor say?"
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Pitaju što je rekao liječnik
01:35
before even saying, "Hello."
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čak i prije nego pozdrave.
01:39
And in the meanwhile,
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A u međuvremenu
01:41
you're left with questions
to which nobody gives an answer.
to which nobody gives an answer.
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vi imate pitanja na koja vam
nitko ne daje odgovore.
nitko ne daje odgovore.
01:47
These are the "Can I?" questions:
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To su „Mogu li“ pitanja:
01:49
Can I work while I have cancer?
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Mogu li raditi dok imam rak?
01:52
Can I study? Can I make love?
Can I be creative?
Can I be creative?
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Mogu li učiti? Mogu li voditi ljubav?
Mogu li biti kreativan?
Mogu li biti kreativan?
01:57
And you wonder, "What have I done
to deserve this?"
to deserve this?"
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I pitate se što ste učinili
da vam se to dogodi.
da vam se to dogodi.
02:01
You wonder, "Can I change something
about my lifestyle?"
about my lifestyle?"
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Pitate se možete li promijeniti svoj
način života.
način života.
02:05
You wonder, "Can I do something?
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Pitate se možete li štogod učiniti,
02:08
Are there any other options?"
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postoji li koja druga mogućnost.
02:12
And, obviously, doctors are
the good guys in all these scenarios,
the good guys in all these scenarios,
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I, naravno, liječnici su u
čitavoj toj priči pozitivci
čitavoj toj priči pozitivci
02:17
because they are very professional
and dedicated to curing you.
and dedicated to curing you.
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zato što su vrlo profesionalni i
posvećeni vašem liječenju.
posvećeni vašem liječenju.
02:23
But they also are very used
to having to deal with patients,
to having to deal with patients,
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Ali, također, oni su naviknuli
nositi se s pacijentima
nositi se s pacijentima
02:29
so I'd say that they sometimes
lose the idea that this is torture for you
lose the idea that this is torture for you
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tako da mislim da ponekad ne
shvaćaju da je to za vas mučenje
shvaćaju da je to za vas mučenje
02:36
and that you become,
literally, a patient --
literally, a patient --
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i da doslovno postajete pacijent,
02:41
"patient" means "the one who waits."
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u smislu „onaj koji čeka“.
02:43
(Laughter)
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(Smijeh)
02:44
Things are changing, but classically,
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Stvari se mijenjaju, ali kao i obično,
02:49
they tend to not engage you in any way
to learn about your condition,
to learn about your condition,
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ni na koji vas način ne
upućuju u vaše stanje.
upućuju u vaše stanje.
02:54
to get your friends and family engaged,
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kao ni vaše prijatelje i obitelj,
02:58
or showing you ways
in which you can change your lifestyle
in which you can change your lifestyle
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niti vas savjetuju kako
promijeniti način života
promijeniti način života
03:02
to minimize the risks
of what you're going through.
of what you're going through.
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kako biste smanjili rizik
onoga kroz što prolazite.
onoga kroz što prolazite.
03:06
But instead, you're forced there to wait
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Umjesto toga, prisiljeni ste čekati
03:09
in the hands of a series
of very professional strangers.
of very professional strangers.
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u rukama vrlo ozbiljnih
profesionalnih stranaca.
profesionalnih stranaca.
03:16
While I was in the hospital,
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Kada sam bio u bolnici,
03:18
I asked for a printed-out
picture of my cancer
picture of my cancer
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tražio sam izrađenu sliku raka
03:22
and I spoke with it.
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i razgovarao sam s njim.
03:25
It was really hard to obtain,
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Bilo ju je vrlo teško dobiti
03:27
because it's not common practice
to ask for a picture of your own cancer.
to ask for a picture of your own cancer.
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jer nije uobičajeno tražiti
sliku vlastitog raka.
sliku vlastitog raka.
03:32
I talked to it and I said,
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Razgovarao sam s njim i rekao:
03:34
"Okay, cancer,
you're not all there is to me.
you're not all there is to me.
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„Ok, raku, ti ne predstavljaš
sve što ja jesam.
sve što ja jesam.
03:38
There's more to me.
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Više sam od toga.
03:40
A cure, whichever it is, will have
to deal with the whole of me."
to deal with the whole of me."
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Lijek, kakav god on bio, morat će
se nositi sa mnom u cijelosti.“
se nositi sa mnom u cijelosti.“
03:47
And so, the next day, I left the hospital
against medical advice.
against medical advice.
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I tako sam sutradan, unatoč
savjetima liječnika, napustio bolnicu.
savjetima liječnika, napustio bolnicu.
03:53
I was determined to change
my relationship with the cancer
my relationship with the cancer
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Odlučio sam promijeniti
svoj odnos s rakom
svoj odnos s rakom
03:57
and I was determined
to learn more about my cancer
to learn more about my cancer
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i odlučio sam naučiti više o njemu
04:00
before doing anything
as drastic as a surgery.
as drastic as a surgery.
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prije poduzimanja drastičnih mjera,
kao što je operacija.
kao što je operacija.
04:06
I'm an artist, I use several forms
of open-source technologies
of open-source technologies
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Umjetnik sam i koristim nekoliko
oblika open-source tehnologija
oblika open-source tehnologija
04:12
and open information in my practice.
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i otvorenih informacija.
04:15
So my best bet was to get it all
out there, get the information out there,
out there, get the information out there,
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Najbolja prilika bila mi je da
prikupim sve informacije
prikupim sve informacije
04:21
and use it so that it could be
accessed by anyone.
accessed by anyone.
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i koristim ih tako da svima
budu dostupne.
budu dostupne.
04:28
So I created a website,
which is called La Cura,
which is called La Cura,
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Napravio sam web stranicu La Cura
04:32
on which I put my medical data, online.
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na koju sam postavio svoje medicinske podatke.
04:35
I actually had to hack it
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Morao sam ih ukrasti,
04:37
and that's a thing which we
can talk about in another speech.
can talk about in another speech.
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ali to je nešto o čemu možemo
pričati u nekom drugom govoru.
pričati u nekom drugom govoru.
04:41
(Laughter)
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(Smijeh)
04:42
I chose this word, La Cura --
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Izabrao sam tu riječ, La Cura
04:45
La Cura in Italian means "the cure" --
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što na talijanskom znači lijek
04:47
because in many different cultures,
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jer u različitim kulturama
04:50
the word "cure" can mean
many different things.
many different things.
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„lijek“ može značiti različite stvari.
04:55
In our Western cultures,
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U našim zapadnjačkim kulturama
04:56
it means eradicating
or reversing a disease,
or reversing a disease,
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znači iskorjenjivanje ili
poništavanje bolesti,
poništavanje bolesti,
05:01
but in different cultures,
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ali u različitim kulturama,
05:02
for example, a culture from Asia,
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na primjer, azijskoj,
05:06
from the Mediterranean,
from Latin countries, from Africa,
from Latin countries, from Africa,
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mediteranskoj, latinsko-američkoj,
afričkoj
afričkoj
05:10
it can mean many more things.
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može imati više značenja.
05:12
Of course, I was interested
in the opinions of doctors
in the opinions of doctors
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Naravno, zanimalo me mišljenje liječnika
05:18
and healthcare providers,
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i zdravstvenih djelatnika,
05:20
but I was also interested in
the cure of the artist, of the poet,
the cure of the artist, of the poet,
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ali i lijek umjetnika, pjesnika,
05:26
of the designer,
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dizajnera,
05:28
of, who knows, the musicians.
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od, tko zna, glazbenika.
05:32
I was interested in the social cure,
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Zanimao me društveni lijek,
05:35
I was interested in
the psychological cure,
the psychological cure,
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psihološki lijek,
05:38
I was interested in the spiritual cure,
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duhovni lijek,
05:41
I was interested in the emotional cure,
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emocionalni lijek,
05:44
I was interested in any form of cure.
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zanimao me bilo koji oblik lijeka.
05:48
And, it worked.
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I upalilo je.
05:52
The La Cura website went viral.
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La Cura stranica postala je hit.
05:55
I received lots of media attention
from Italy and from abroad
from Italy and from abroad
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Imao sam veliku medijsku pažnju
iz Italije i inozemstva
iz Italije i inozemstva
06:00
and I quickly received
more than 500,000 contacts --
more than 500,000 contacts --
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i ubrzo dobio više od 500 000 kontakata-
06:06
emails, social networking --
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e-mailovi, društvene mreže -
06:08
most of them were a suggestion
on how to cure my cancer,
on how to cure my cancer,
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većina su bili prijedlozi
kako izliječiti moj rak,
kako izliječiti moj rak,
06:11
but more of them were about
how to cure myself
how to cure myself
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više ih je bilo o tome kako
izliječiti samog sebe
izliječiti samog sebe
06:15
as a full individual.
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kao pojedinca.
06:18
For example, many thousands of videos,
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Na primjer, tisuće videa,
06:22
images, pictures, art performances
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prikaza, slika, umjetničkih izvedbi
06:26
were produced for La Cura.
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bilo je izrađeno za La Curu.
06:28
For example, here we see
Francesca Fini in her performance.
Francesca Fini in her performance.
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Ovdje, na primjer, vidimo
Francescu Fini u njenoj izvedbi.
Francescu Fini u njenoj izvedbi.
06:33
Or, as artist Patrick Lichty has done:
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Ili, što je umjetnik
Patrick Lichty učinio:
Patrick Lichty učinio:
06:37
He produced a 3D sculpture of my tumor
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3D skulpturu mog tumora
06:42
and put it on sale on Thingiverse.
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koju je stavio na prodaju na Thingivers.
06:44
Now you can have my cancer, too!
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Sada i vi možete imati moj rak!
06:47
(Laughter)
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(Smijeh)
06:49
Which is a nice thing,
if you think about it,
if you think about it,
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Što je zgodna stvar,
ako razmislite o tome,
ako razmislite o tome,
06:52
we can share our cancer.
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možemo dijeliti rakove.
06:56
And this was going on --
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I događalo se ovo -
06:58
scientists, the traditional
medicine experts,
medicine experts,
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znanstvenici, tradicionalni
medicinski stručnjaci,
medicinski stručnjaci,
07:02
several researchers, doctors --
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nekoliko istraživača, liječnici -
07:03
all connected with me to give advice.
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svi povezani sa mnom da bi me savjetovali.
07:06
With all this information and support,
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Sa svim tim informacijama i potporom,
07:08
I was able to form a team
of several neurosurgeons,
of several neurosurgeons,
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formirao sam tim od
nekoliko neurokirurga,
nekoliko neurokirurga,
07:14
traditional doctors,
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tradicionalnih liječnika,
07:16
oncologists, and several
hundred volunteers
hundred volunteers
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onkologa, i nekoliko
stotina volontera
stotina volontera
07:23
with whom I was able to discuss
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s kojima sam mogao raspravljati
07:26
the information I was receiving,
which is very important.
which is very important.
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o informacijama koje sam primao,
što je vrlo važno.
što je vrlo važno.
07:31
And together, we were able to form
a strategy for my own cure
a strategy for my own cure
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A zajedno smo mogli izraditi
strategiju za moje izlječenje
strategiju za moje izlječenje
07:38
in many languages,
according to many cultures.
according to many cultures.
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na različitim jezicima,
prema različitim kulturama.
prema različitim kulturama.
07:41
And the current strategy
spans the whole world
spans the whole world
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Trenutna strategija uključuje čitav svijet
07:45
and thousands of years of human history,
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i tisuće godina ljudske povijesti,
07:47
which is quite remarkable for me.
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što je prilično izvanredno za mene.
07:49
[Surgery]
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[Operacija]
07:51
The follow-up MRIs showed, luckily,
little to no growth of the cancer.
little to no growth of the cancer.
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Iduća je MR snimka pokazala minimalno
do nepostojeće širenje raka.
do nepostojeće širenje raka.
07:57
So I was able to take my time and choose.
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Bio sam u mogućnosti
uzeti vremena i izabrati.
uzeti vremena i izabrati.
08:00
I chose the doctor I wanted to work with,
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Izabrao sam liječnike
s kojima sam htio raditi,
s kojima sam htio raditi,
08:04
I chose the hospital I wanted to stay in,
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bolnicu u kojoj sam htio ostati,
08:06
and in the meanwhile, I was supported
by thousands of people,
by thousands of people,
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a u međuvremenu me
podržalo na tisuće ljudi,
podržalo na tisuće ljudi,
08:10
none of whom felt pity for me.
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od kojih me nitko nije sažalijevao.
08:13
Everyone felt like they could
take an active role
take an active role
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Svi su se osjećali kao da mogu
odigrati aktivnu ulogu
odigrati aktivnu ulogu
08:19
in helping me to get well,
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i pomoći mi da ozdravim,
08:21
and this was the most important
part of La Cura.
part of La Cura.
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a to je bio najvažniji dio La Cure.
08:26
What are the outcomes?
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Koji su ishodi?
08:28
I'm fine, as you can see, pretty fine.
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Ja sam dobro, kao što vidite,
prilično dobro.
prilično dobro.
08:30
(Applause)
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(Pljesak)
08:35
I have excellent news:
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Imam odlične vijesti:
08:38
After the surgery --
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Nakon operacije-
08:39
I have -- I had a very low-grade glioma,
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imam— imao sam vrlo nizak stupanj glioma,
08:45
which is a "good" kind of cancer
which doesn't grow a lot.
which doesn't grow a lot.
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što je „dobra“ vrsta raka
koja ne raste puno.
koja ne raste puno.
08:49
I have completely changed
my life and my lifestyle.
my life and my lifestyle.
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Potupno sam promijenio svoj život
i način života.
i način života.
08:54
Everything I did was thoughtfully
designed to get me engaged.
designed to get me engaged.
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Sve što sam radio bilo je osmišljeno
kako bih se angažirao.
kako bih se angažirao.
09:00
Up until the very last few
minutes of the surgery,
minutes of the surgery,
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Sve do posljednjih nekoliko
minuta operacije,
minuta operacije,
09:04
which was very intense,
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koja je bila vrlo intenzivna,
09:06
a matrix of electrodes
was implanted in my brain
was implanted in my brain
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matrica elektroda bila je
usađena u moj mozak
usađena u moj mozak
09:10
from this side,
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od ove strane,
09:12
to be able to build a functional map
of what the brain controls.
of what the brain controls.
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kako bi se izradila funkcionalna mapa
onoga što mozak kontrolira.
onoga što mozak kontrolira.
09:17
And right before the operation,
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Netom prije operacije
09:20
we were able to discuss
the functional map of my brain
the functional map of my brain
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mogli smo raspravljati o
funkcionalnoj mapi mog mozga
funkcionalnoj mapi mog mozga
09:27
with the doctor, to understand
which risks I was running into
which risks I was running into
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s liječnicima, kako bismo shvatili
koje rizike prihvaćam
koje rizike prihvaćam
09:32
and if there were any I wanted to avoid.
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i vidjeli postoje li neke
koje želim izbjeći.
koje želim izbjeći.
09:36
Obviously, there were.
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Naravno, bilo ih je.
09:38
[Open]
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[Otvori]
09:39
And this openness was really
the fundamental part of La Cura.
the fundamental part of La Cura.
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Otvorenost je bila temeljni dio La Cure.
09:44
Thousands of people shared
their stories, their experiences.
their stories, their experiences.
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Tisuće su ljudi su dijelili svoje priče,
svoja iskustva.
svoja iskustva.
09:49
Doctors got to talk with people
they don't usually consult
they don't usually consult
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Liječnici su razgovarali s ljudima
s kojima se inače ne savjetuju
s kojima se inače ne savjetuju
09:54
when they think about cancer.
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kada razmišljaju o raku.
09:59
I'm a self-founding,
continuous state of translation
continuous state of translation
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Samostalno sam osnovana
trajna država prijevoda
trajna država prijevoda
10:04
among many different languages,
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među različitim jezicima,
10:06
in which science meets emotion
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u kojima znanost upoznaje osjećaje,
10:10
and conventional research
meets traditional research.
meets traditional research.
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a konvencionalno istraživanje
upoznaje tradicionalno.
upoznaje tradicionalno.
10:14
[Society]
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[Društvo]
10:16
The most important thing of La Cura
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Najvažniji dio La Cure
10:21
was to feel like a part
of a really engaged and connected society
of a really engaged and connected society
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je osjećaj da ste dio angažiranog
i povezanog društva
i povezanog društva
10:28
whose wellness really depends
on the wellness of all of its components.
on the wellness of all of its components.
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čija dobrobit zaista ovisi o
dobrobiti svih njegovih sastavnica.
dobrobiti svih njegovih sastavnica.
10:36
This global performance
is my open-source cure for cancer.
is my open-source cure for cancer.
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Ova je globalna izvedba moj
open-source lijek za rak.
open-source lijek za rak.
10:41
And from what I feel,
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I, kako mi se čini,
10:43
it's a cure for me, but for us all.
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to je lijek za mene, ali i za sve nas.
10:46
Thank you.
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Hvala.
10:47
(Applause).
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(Pljesak).
ABOUT THE SPEAKER
Salvatore Iaconesi - Open-source engineer and artistAn artist, hacker and interaction designer, Salvatore Iaconesi embarked on a bold open-source project in 2012. Subject: his own brain cancer
Why you should listen
"I have a brain cancer.” Data artist and TED Fellow Salvatore Iaconesi posted these words on his website September 10, 2012. He wrote:
Yesterday I went to get my digital medical records: I have to show them to many doctors.
Sadly they were in a closed, proprietary format and, thus, I could not open them using my computer, or send them in this format to all the people who could have saved my life.
I cracked them.
I opened them and converted the contents into open formats, so that I could share them with everyone.
In cracking his scans, X-rays, lab notes and charts, and opening them to the world, he laid out a model for open-sourcing not only a support group, but a whole cure (he calls it, in his native Italian, "La cura"). And he means a cure of any kind: "There are cures for the body, for spirit, for communication." He had brain surgery in February 2013, "and everything went perfectly." Now he is working on sharing the benefits of his experience.
More profile about the speakerYesterday I went to get my digital medical records: I have to show them to many doctors.
Sadly they were in a closed, proprietary format and, thus, I could not open them using my computer, or send them in this format to all the people who could have saved my life.
I cracked them.
I opened them and converted the contents into open formats, so that I could share them with everyone.
In cracking his scans, X-rays, lab notes and charts, and opening them to the world, he laid out a model for open-sourcing not only a support group, but a whole cure (he calls it, in his native Italian, "La cura"). And he means a cure of any kind: "There are cures for the body, for spirit, for communication." He had brain surgery in February 2013, "and everything went perfectly." Now he is working on sharing the benefits of his experience.
Salvatore Iaconesi | Speaker | TED.com