TEDMED 2013
Salvatore Iaconesi: What happened when I open-sourced my brain cancer
Salvatore Jakonezi (Salvatore Iaconesi): Šta se desilo kada sam učinio da moj rak mozga postane svima dostupan
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Readability: 4.1
1,178,915 views
Kada je umetniku Salvatoru Jakoneziju dijagnostikovan rak mozga, on je odbio da bude pasivni pacijent - što, kao što ističe - znači "onaj koji čeka". Pa je hakovao nalaze svoga mozga, postavio ih na internet, i pozvao globalnu zajednicu da se uključi u nalaženje "leka". Ovo je ponekad značilo medicinski savet, a ponekad je značilo umetnost, muziku, emotivnu podršku - više od pola miliona 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 iza je bio moj rak mozga.
00:19
Isn't it nice?
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Zar nije lep?
00:20
(Laughter)
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(Smeh)
00:23
The key phrase is "was,"
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Ključna reč je "bio",
00:25
phew.
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pfju.
00:27
(Applause)
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(Aplauz)
00:32
Having brain cancer was really,
as you can imagine,
as you can imagine,
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Imati rak mozga je bila stvarno,
kao što možete zamisliti,
kao što možete zamisliti,
00:36
shocking news for me.
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šokantna vest za mene.
00:38
I knew nothing about cancer.
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Nisam znao ništa o raku.
00:42
In Western cultures, when you have cancer,
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U zapadnim kulturama, kada imate rak,
00:45
it's as if you disappear in a way.
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kao da nestajete na neki način.
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 složenog ljudskog bića
zamenjen je medicinskim podacima:
zamenjen je medicinskim podacima:
00:55
Your images, your exams, your lab values,
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vašim nalazima, ispitivanjima,
laboratorijskim vrednostima,
laboratorijskim vrednostima,
01:01
a list of medicines.
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listom lekova.
01:03
And everyone changes as well.
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I svi se takođe menjaju.
01:06
You suddenly become a disease on legs.
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Iznenada postajete hodajuća bolest.
01:09
Doctors start speaking a language
which you don't understand.
which you don't understand.
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Doktori počinju da govore jezikom
koji ne razumete.
koji ne razumete.
01:13
They start pointing their fingers
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Počinju da upiru prstom
01:19
at your body and your images.
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na vaše telo i vaše nalaze.
01:24
People start changing as well
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Ljudi takođe počinju da se menjaju
01:27
because they start dealing
with the disease,
with the disease,
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zato što počinju da se bave bolešću
01:31
instead of with the human being.
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umesto ljudskim bićem.
01:33
They say, "What did the doctor say?"
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Kažu: "Šta su rekli doktori?"
01:35
before even saying, "Hello."
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pre nego što čak kažu "Zdravo".
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 ste ostavljeni sa pitanjima
na koja niko ne daje odgovor.
na koja niko ne daje odgovor.
01:47
These are the "Can I?" questions:
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Ovo su "Mogu li?" pitanja:
01:49
Can I work while I have cancer?
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Mogu li da radim 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 da učim? Mogu li da vodim ljubav?
Mogu li da budem kreativan?
Mogu li da budem kreativan?
01:57
And you wonder, "What have I done
to deserve this?"
to deserve this?"
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I pitate se: "Šta sam učinio
da zaslužim ovo?"
da zaslužim ovo?"
02:01
You wonder, "Can I change something
about my lifestyle?"
about my lifestyle?"
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Pitate se: "Mogu li da promenim nešto
u svom načinu života?"
u svom načinu života?"
02:05
You wonder, "Can I do something?
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Pitate se: "Mogu li da uradim nešto?
02:08
Are there any other options?"
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Da li postoje neke druge opcije?"
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, očigledno, doktori su
dobri momci u svim ovim scenarijima,
dobri momci u svim ovim scenarijima,
02:17
because they are very professional
and dedicated to curing you.
and dedicated to curing you.
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zato što su veoma profesionalni
i posvećeni vašem izlečenju
i posvećeni vašem izlečenju
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 oni su takođe veoma navikli
da moraju da se bave pacijentima,
da moraju da se bave 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 bih rekao da ponekad
smetnu s uma da je ovo mučenje za vas
smetnu s uma da je ovo mučenje za vas
02:36
and that you become,
literally, a patient --
literally, a patient --
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i postajete, bukvalno, pacijent -
02:41
"patient" means "the one who waits."
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"pacijent" znači "onaj koji čeka".
02:43
(Laughter)
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(Smeh)
02:44
Things are changing, but classically,
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Stvari se menjaju, ali najčešće,
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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oni su skloni da vas ni na koji način
ne podstaknu da saznate o svom stanju,
ne podstaknu da saznate o svom stanju,
02:54
to get your friends and family engaged,
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da podstaknu vaše prijatelje
i porodicu da se uključe,
i porodicu da se uključe,
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 da vam pokažu načine
da promenite stil života
da promenite stil života
03:02
to minimize the risks
of what you're going through.
of what you're going through.
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da umanjite rizike
onoga kroz za šta prolazite.
onoga kroz za šta prolazite.
03:06
But instead, you're forced there to wait
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Umesto toga prinuđeni ste da čekate
03:09
in the hands of a series
of very professional strangers.
of very professional strangers.
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u rukama veoma profesionalnih stranaca.
03:16
While I was in the hospital,
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Dok 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 odštampanu sliku mog raka
03:22
and I spoke with it.
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i razgovarao sam sa njim.
03:25
It was really hard to obtain,
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Bilo je teško dobiti je,
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 niije uobičajna praksa
da tražite sliku sopstvenog raka.
da tražite sliku sopstvenog raka.
03:32
I talked to it and I said,
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Pričao sam sa njim i rekao sam:
03:34
"Okay, cancer,
you're not all there is to me.
you're not all there is to me.
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"U redu, raku, ti nisi sve što sam ja.
03:38
There's more to me.
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Postoji još delova mene.
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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Lek, koji god da je, moraće
da se bavi sa mnom celim."
da se bavi sa mnom celim."
03:47
And so, the next day, I left the hospital
against medical advice.
against medical advice.
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I tako sam, sledećeg dana, napustio
bolnicu uprkos savetu doktora.
bolnicu uprkos savetu doktora.
03:53
I was determined to change
my relationship with the cancer
my relationship with the cancer
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Bio sam rešen da promenim
svoj odnos sa rakom
svoj odnos sa rakom
03:57
and I was determined
to learn more about my cancer
to learn more about my cancer
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i bio sam rešen da naučim više o svom raku
04:00
before doing anything
as drastic as a surgery.
as drastic as a surgery.
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pre nego što uradim bilo šta
drastično poput operacije.
drastično poput operacije.
04:06
I'm an artist, I use several forms
of open-source technologies
of open-source technologies
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Ja sam umetnik, i koristim nekoliko oblika
svima dostupnih tehnologija
svima dostupnih tehnologija
04:12
and open information in my practice.
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i informacija u svom radu.
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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Pa je za mene najbolje bilo da sve stavim
onlajn, da stavim informacije onlajn,
onlajn, da stavim informacije onlajn,
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 može
svako da im pristupi.
svako da im pristupi.
04:28
So I created a website,
which is called La Cura,
which is called La Cura,
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Tako sam napravio sajt,
koji se zove La Cura,
koji se zove La Cura,
04:32
on which I put my medical data, online.
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na koji sam stavio
svoje medicinske podatke.
svoje medicinske podatke.
04:35
I actually had to hack it
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Zapravo sam morao da ga hakujem
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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i to je stvar o kojoj možemo
da pričamo u drugom govoru.
da pričamo u drugom govoru.
04:41
(Laughter)
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(Smeh)
04:42
I chose this word, La Cura --
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Izabrao sam ovu reč, La Cura -
04:45
La Cura in Italian means "the cure" --
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La Cura na italijanskom znači "lek" -
04:47
because in many different cultures,
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zato što u različitim kulturama,
04:50
the word "cure" can mean
many different things.
many different things.
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reč "lek" može da znači
mnogo različitih stvari.
mnogo različitih stvari.
04:55
In our Western cultures,
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U našim zapadnim kulturama
04:56
it means eradicating
or reversing a disease,
or reversing a disease,
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znači uništiti ili preokrenuti bolest,
05:01
but in different cultures,
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ali u drugim kulturama,
05:02
for example, a culture from Asia,
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na primer, kulturi iz Azije,
05:06
from the Mediterranean,
from Latin countries, from Africa,
from Latin countries, from Africa,
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Mediterana, latinskih zemalja, Afrike,
05:10
it can mean many more things.
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može da znači još mnogo stvari.
05:12
Of course, I was interested
in the opinions of doctors
in the opinions of doctors
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Naravno, bio sam zainteresovan
za mišljenja doktora
za mišljenja doktora
05:18
and healthcare providers,
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i zdravstvenih radnika,
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 sam takođe bio zainteresovan
za lek umetnika, pesnika,
za lek umetnika, pesnika,
05:26
of the designer,
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dizajnera,
05:28
of, who knows, the musicians.
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ko zna, muzičara.
05:32
I was interested in the social cure,
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Bio sam zainteresovan za društveni lek,
05:35
I was interested in
the psychological cure,
the psychological cure,
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bio sam zainteresovan za psihološki lek,
05:38
I was interested in the spiritual cure,
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bio sam zainteresovan za duhovni lek,
05:41
I was interested in the emotional cure,
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bio sam zainteresovan za emotivni lek,
05:44
I was interested in any form of cure.
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bio sam zainteresovan
za bilo koji vid leka.
za bilo koji vid leka.
05:48
And, it worked.
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I urodilo je plodom.
05:52
The La Cura website went viral.
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Sajt La Cura je postao popularan
na internetu.
na internetu.
05:55
I received lots of media attention
from Italy and from abroad
from Italy and from abroad
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Dobio sam dosta pažnje medija
iz Italije i inostranstva
iz Italije i inostranstva
06:00
and I quickly received
more than 500,000 contacts --
more than 500,000 contacts --
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i ubrzo sam primio
više od 500.000 kontakata -
više od 500.000 kontakata -
06:06
emails, social networking --
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putem mejla, socijalnih mreža -
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 njih su bili predlozi
kako da izlečim rak,
kako da izlečim rak,
06:11
but more of them were about
how to cure myself
how to cure myself
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ali više njih su bili predlozi
kako da izlečim sebe,
kako da izlečim sebe,
06:15
as a full individual.
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kao celovitog pojedinca.
06:18
For example, many thousands of videos,
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Na primer, više hiljada video snimaka,
06:22
images, pictures, art performances
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fotografija, slika, umetničkih nastupa
06:26
were produced for La Cura.
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napravljeno je za La Cura-u.
06:28
For example, here we see
Francesca Fini in her performance.
Francesca Fini in her performance.
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Na primer, ovde vidimo
Frančesku Fini u svom performansu.
Frančesku Fini u svom performansu.
06:33
Or, as artist Patrick Lichty has done:
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Ili, kao što je umetnik Patrik Lihti
učinio:
učinio:
06:37
He produced a 3D sculpture of my tumor
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On je napravio 3D skulpturu mog tumora
06:42
and put it on sale on Thingiverse.
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i stavio je na prodaju na Tingivers.
06:44
Now you can have my cancer, too!
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Sada i vi takođe možete imati moj rak!
06:47
(Laughter)
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(Smeh)
06:49
Which is a nice thing,
if you think about it,
if you think about it,
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Što je lepo, ako razmislite o tome,
06:52
we can share our cancer.
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možemo da delimo naš rak.
06:56
And this was going on --
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I dešavalo se da su -
06:58
scientists, the traditional
medicine experts,
medicine experts,
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naučnici, eksperti tradicionalne medicine,
07:02
several researchers, doctors --
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nekoliko istraživača, doktori -
07:03
all connected with me to give advice.
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svi bili povezani sa mnom
da bi dali savet.
da bi dali savet.
07:06
With all this information and support,
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Sa svim tim informacijama i podrškom,
07:08
I was able to form a team
of several neurosurgeons,
of several neurosurgeons,
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uspeo sam da formiram tim
od nekoliko neurohirurga
od nekoliko neurohirurga
07:14
traditional doctors,
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doktora tradicionalne medicine,
07:16
oncologists, and several
hundred volunteers
hundred volunteers
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onkologa, i nekoliko stotina volontera
07:23
with whom I was able to discuss
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sa kojima sam mogao da razgovaram
07:26
the information I was receiving,
which is very important.
which is very important.
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o informacijama koje sam dobijao,
što je veoma važno.
što je veoma 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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I zajedno bili smo u stanju da napravimo
strategiju mog izlečenja
strategiju mog izlečenja
07:38
in many languages,
according to many cultures.
according to many cultures.
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na mnogo jezika,
u skladu sa mnogim kulturama.
u skladu sa mnogim kulturama.
07:41
And the current strategy
spans the whole world
spans the whole world
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I trenutna strategija povezuje ceo svet
07:45
and thousands of years of human history,
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i hiljade godina ljudske istorije,
07:47
which is quite remarkable for me.
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što je za mene prilično izuzetno.
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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Srećom, snimci magnetne rezonance
nakon operacije pokazali su
nakon operacije pokazali su
mali, odnosno nikakav rast tumora.
07:57
So I was able to take my time and choose.
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Tako da sam mogao da
izdvojim vreme i izaberem.
izdvojim vreme i izaberem.
08:00
I chose the doctor I wanted to work with,
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Izabrao sam doktora
sa kojim sam želeo da radim,
sa kojim sam želeo da radim,
08:04
I chose the hospital I wanted to stay in,
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izabrao sam bolnicu
u kojoj sam želeo da budem,
u kojoj sam želeo da budem,
08:06
and in the meanwhile, I was supported
by thousands of people,
by thousands of people,
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a u međuvremenu,
hiljade ljudi su me podržale,
hiljade ljudi su me podržale,
08:10
none of whom felt pity for me.
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od kojih me niko nije sažaljevao.
08:13
Everyone felt like they could
take an active role
take an active role
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Svi su osećali da mogu
da preuzmu aktivnu ulogu
da preuzmu aktivnu ulogu
08:19
in helping me to get well,
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u pomaganju da ozdravim,
08:21
and this was the most important
part of La Cura.
part of La Cura.
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i ovo je bila najbitnija uloga La Cura-e.
08:26
What are the outcomes?
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Šta su ishodi?
08:28
I'm fine, as you can see, pretty fine.
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Dobro sam, kao što možete da vidite,
dosta dobro.
dosta dobro.
08:30
(Applause)
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(Aplauz)
08:35
I have excellent news:
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Imam odlične vesti:
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
gliome veoma niskog stepena
gliome veoma niskog stepena
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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Potpuno sam promenio
svoj život i stil života.
svoj život i stil 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 uradio bilo je
smišljeno napravljeno da bi me uključilo.
smišljeno napravljeno da bi me uključilo.
09:00
Up until the very last few
minutes of the surgery,
minutes of the surgery,
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Sve do poslednjih nekoliko
minuta operacije,
minuta operacije,
09:04
which was very intense,
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koja je bila veoma intenzivna,
09:06
a matrix of electrodes
was implanted in my brain
was implanted in my brain
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matriks elektroda bio je
implantovan u moj mozak,
implantovan u moj mozak,
09:10
from this side,
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sa 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 napravila funkcionalna mapa
onoga što mozak kontroliše.
onoga što mozak kontroliše.
09:17
And right before the operation,
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I neposredno pre 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 da razgovaramo
o funkcionalnoj mapi moga mozga
o funkcionalnoj mapi moga mozga
09:27
with the doctor, to understand
which risks I was running into
which risks I was running into
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sa doktorom, kako bismo razumeli
rizike sa kojima sam se suočavao
rizike sa kojima sam se suočavao
09:32
and if there were any I wanted to avoid.
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i da li su postojali neki
koje sam želeo da izbegnem.
koje sam želeo da izbegnem.
09:36
Obviously, there were.
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Naravno, bilo ih je.
09:38
[Open]
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[Otvoren]
09:39
And this openness was really
the fundamental part of La Cura.
the fundamental part of La Cura.
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I ova otvorenost je bila stvarno
bitan deo La Cura-e.
bitan deo La Cura-e.
09:44
Thousands of people shared
their stories, their experiences.
their stories, their experiences.
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Hiljade ljudi su podelili
svoje priče, svoja iskustva.
svoje priče, svoja iskustva.
09:49
Doctors got to talk with people
they don't usually consult
they don't usually consult
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Doktori su dobili priliku da pričaju
sa ljudima koje obično ne konsultuju
sa ljudima koje obično ne konsultuju
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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Ja sam samouspostavljeno,
kontinuirano stanje prevoda
kontinuirano stanje prevoda
10:04
among many different languages,
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među mnogo različitih jezika,
10:06
in which science meets emotion
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u kome se sreću nauka i emocija
10:10
and conventional research
meets traditional research.
meets traditional research.
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i u kome se sreću konvencionalno
i tradicionalno istraživanje.
i tradicionalno istraživanje.
10:14
[Society]
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[Društvo]
10:16
The most important thing of La Cura
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Najbitnija stvar kod La Cura-e
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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bila je osećati se kao deo
stvarno uključenog i povezanog društva
stvarno uključenog 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 stvarno zavisi
od dobrobiti njegovih delova.
od dobrobiti njegovih delova.
10:36
This global performance
is my open-source cure for cancer.
is my open-source cure for cancer.
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Ovaj globalni performans
je moj svima dostupan lek za rak.
je moj svima dostupan lek za rak.
10:41
And from what I feel,
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I osećam
10:43
it's a cure for me, but for us all.
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da je to lek ne samo za mene,
već za sve nas.
već za sve nas.
10:46
Thank you.
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Hvala vam.
10:47
(Applause).
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(Aplauz)
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