TEDMED 2013
Salvatore Iaconesi: What happened when I open-sourced my brain cancer
Salvatore Iaconesi: Que pasou cando fixen público o meu cáncer cerebral
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Cando ao artista Salvatore Iaconesi lle diagnosticaron un cáncer cerebral, negouse a ser un paciente pasivo -o que para el significa "un que espera". Pirateou o seu escáner cerebral, colgouno na rede e invitou á comunidade global a apostar por unha "cura". Isto supuxo recomendacións médicas, pero tamén arte, música ou apoio emocional, de máis de medio millón de persoas.
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.
Este de aquí atrás foi
o meu cáncer cerebral.
o meu cáncer cerebral.
00:14
This back here was my brain cancer.
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00:19
Isn't it nice?
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É bonito, non si?
00:20
(Laughter)
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(Risas)
00:23
The key phrase is "was,"
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Aquí a palabra clave é "foi".
00:25
phew.
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Ufff!
00:27
(Applause)
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(Aplausos)
00:32
Having brain cancer was really,
as you can imagine,
as you can imagine,
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Ter cáncer cerebral foi,
como podedes imaxinar,
como podedes imaxinar,
unha noticia moi impactante para min.
00:36
shocking news for me.
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00:38
I knew nothing about cancer.
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Non sabía nada sobre o cáncer.
00:42
In Western cultures, when you have cancer,
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Nas culturas occidentais,
cando tes cáncer,
cando tes cáncer,
[Desaparecer]
00:45
it's as if you disappear in a way.
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é, dalgún xeito, coma se desapareceras.
00:48
Your life as a complex human being
is replaced by medical data:
is replaced by medical data:
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A vida, a dun ser humano complexo,
é substituída por datos médicos:
é substituída por datos médicos:
00:55
Your images, your exams, your lab values,
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as túas radiografías, os exames médicos,
os resultados de laboratorio,
os resultados de laboratorio,
01:01
a list of medicines.
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a lista de medicinas...
[TODO]
E todo o mundo cambia tamén.
01:03
And everyone changes as well.
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01:06
You suddenly become a disease on legs.
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De súpeto convérteste nunha
enfermidade con patas.
enfermidade con patas.
01:09
Doctors start speaking a language
which you don't understand.
which you don't understand.
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Os médicos comezan a falar
un idioma que ti non entendes.
un idioma que ti non entendes.
01:13
They start pointing their fingers
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Empezan a sinalar co dedo
01:19
at your body and your images.
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o teu corpo e as túas radiografías.
01:24
People start changing as well
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A xente comeza a cambiar tamén
01:27
because they start dealing
with the disease,
with the disease,
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porque empezan a tratar
coa enfermidade
coa enfermidade
01:31
instead of with the human being.
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en vez de coa persoa.
01:33
They say, "What did the doctor say?"
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Preguntan: "Que che dixo o médico?"
01:35
before even saying, "Hello."
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incluso antes de dicir "Ola".
[PREGUNTAS]
01:39
And in the meanwhile,
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Mentres tanto,
01:41
you're left with questions
to which nobody gives an answer.
to which nobody gives an answer.
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déixante con preguntas
para as que ninguén ten resposta.
para as que ninguén ten resposta.
01:47
These are the "Can I?" questions:
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Preguntas do tipo "Son quen de...?"
01:49
Can I work while I have cancer?
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Son quen de traballar con cáncer?
01:52
Can I study? Can I make love?
Can I be creative?
Can I be creative?
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Son quen de estudar? De facer o amor?
De ser creativo?
De ser creativo?
01:57
And you wonder, "What have I done
to deserve this?"
to deserve this?"
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Pregúntaste: "Que fixen eu
para merecer isto?"
para merecer isto?"
02:01
You wonder, "Can I change something
about my lifestyle?"
about my lifestyle?"
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Pregúntaste: "Podo cambiar algo
no meu estilo de vida?"
no meu estilo de vida?"
02:05
You wonder, "Can I do something?
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Pregúntaste: "Hai algo que poida facer?
02:08
Are there any other options?"
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Hai algunha outra opción?"
[Hai algo que poida facer?]
02:12
And, obviously, doctors are
the good guys in all these scenarios,
the good guys in all these scenarios,
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E, claro está, os médicos son os
tipos bos en todos estes casos,
tipos bos en todos estes casos,
02:17
because they are very professional
and dedicated to curing you.
and dedicated to curing you.
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porque son moi profesionais
e comprometidos con curarte.
e comprometidos con curarte.
02:23
But they also are very used
to having to deal with patients,
to having to deal with patients,
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Pero tamén están moi acostumados
a tratar con pacientes,
a tratar con pacientes,
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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polo que eu diría que ás veces perden a
perspectiva de que para ti é unha tortura
perspectiva de que para ti é unha tortura
02:36
and that you become,
literally, a patient --
literally, a patient --
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e de que te convertes, literalmente,
nun paciente.
nun paciente.
02:41
"patient" means "the one who waits."
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"Paciente" significa "o que espera".
02:43
(Laughter)
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(Risas)
02:44
Things are changing, but classically,
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As cousas están cambiando
pero o típico
pero o típico
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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é que eviten implicarse de ningún xeito
en coñecer a túa situación,
en coñecer a túa situación,
02:54
to get your friends and family engaged,
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en facer partícipes á túa familia e amigos
02:58
or showing you ways
in which you can change your lifestyle
in which you can change your lifestyle
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ou en ensinarche algún xeito
de modificar o teu estilo de vida
de modificar o teu estilo de vida
03:02
to minimize the risks
of what you're going through.
of what you're going through.
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para minimizar os riscos
do que estás a pasar.
do que estás a pasar.
03:06
But instead, you're forced there to wait
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Pero con todo, veste obrigado a agardar
03:09
in the hands of a series
of very professional strangers.
of very professional strangers.
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nas mans dunha serie de
estraños moi profesionais.
estraños moi profesionais.
[AGARDAR]
03:16
While I was in the hospital,
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Mentres estaba no hospital,
03:18
I asked for a printed-out
picture of my cancer
picture of my cancer
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pedín que me imprimiran a
radiografía do meu cáncer
radiografía do meu cáncer
e falei con el.
03:22
and I spoke with it.
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03:25
It was really hard to obtain,
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Foi moi difícil conseguilo,
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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porque non é moi habitual pedir
unha foto do teu propio cáncer.
unha foto do teu propio cáncer.
03:32
I talked to it and I said,
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Falei con el e díxenlle:
03:34
"Okay, cancer,
you're not all there is to me.
you're not all there is to me.
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"Moi ben, cáncer,
ti non me representas.
ti non me representas.
03:38
There's more to me.
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Eu son máis que isto.
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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A cura, sexa cal sexa, terá que
enfrontarse a todo o meu ser."
enfrontarse a todo o meu ser."
03:47
And so, the next day, I left the hospital
against medical advice.
against medical advice.
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Así que ao día seguinte marchei do
hospital malia a recomendación médica.
hospital malia a recomendación médica.
03:53
I was determined to change
my relationship with the cancer
my relationship with the cancer
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Estaba decidido a cambiar
a miña relación co cáncer
a miña relación co cáncer
03:57
and I was determined
to learn more about my cancer
to learn more about my cancer
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e estaba decidido a aprender
máis sobre el
máis sobre el
04:00
before doing anything
as drastic as a surgery.
as drastic as a surgery.
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antes de facer algo tan drástico
como unha cirurxía.
como unha cirurxía.
04:06
I'm an artist, I use several forms
of open-source technologies
of open-source technologies
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Son artista, uso varios tipos de
tecnoloxías de código aberto
tecnoloxías de código aberto
04:12
and open information in my practice.
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e información aberta no meu traballo.
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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Polo que a miña grande aposta foi
divulgar todo, divulgar a información,
divulgar todo, divulgar a información,
04:21
and use it so that it could be
accessed by anyone.
accessed by anyone.
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e facelo de tal forma que calquera
puidese acceder a ela.
puidese acceder a ela.
04:28
So I created a website,
which is called La Cura,
which is called La Cura,
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Así, creei un sitio web
chamado "La Cura",
chamado "La Cura",
onde publiquei os meus
datos médicos na rede.
datos médicos na rede.
04:32
on which I put my medical data, online.
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04:35
I actually had to hack it
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En realidade tiven que piratealos
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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pero dese tema podemos
falar noutra charla.
falar noutra charla.
04:41
(Laughter)
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(Risas)
04:42
I chose this word, La Cura --
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Elixín esta palabra, "La Cura",
04:45
La Cura in Italian means "the cure" --
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porque en italiano significa "curación"
04:47
because in many different cultures,
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e porque en moitas culturas diferentes,
04:50
the word "cure" can mean
many different things.
many different things.
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a palabra "curación" pode
ter moitos significados.
ter moitos significados.
04:55
In our Western cultures,
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Na nosa cultura occidental
04:56
it means eradicating
or reversing a disease,
or reversing a disease,
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significa erradicar ou facer
retroceder á enfermidade,
retroceder á enfermidade,
05:01
but in different cultures,
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pero noutras culturas distintas
05:02
for example, a culture from Asia,
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como por exemplo as de Asia,
05:06
from the Mediterranean,
from Latin countries, from Africa,
from Latin countries, from Africa,
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do Mediterráneo, dos países latinos
ou de África,
ou de África,
05:10
it can mean many more things.
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pode representar moitas
outras cousas.
outras cousas.
05:12
Of course, I was interested
in the opinions of doctors
in the opinions of doctors
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Por suposto que me interesaba
a opinión dos médicos
a opinión dos médicos
05:18
and healthcare providers,
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e do resto de profesionais da saúde,
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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pero tamén me interesaba a curación
proposta polo artista, polo poeta,
proposta polo artista, polo poeta,
05:26
of the designer,
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polo deseñador,
05:28
of, who knows, the musicians.
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ou, por que non, polos músicos.
05:32
I was interested in the social cure,
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Interesábame a curación social,
05:35
I was interested in
the psychological cure,
the psychological cure,
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interesábame a curación psicolóxica,
05:38
I was interested in the spiritual cure,
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interesábame a curación espiritual,
05:41
I was interested in the emotional cure,
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interesábame a curación emocional,
05:44
I was interested in any form of cure.
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interesábame todo tipo de curación.
05:48
And, it worked.
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E funcionou.
05:52
The La Cura website went viral.
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O sitio "La Cura" deu a volta ao mundo.
05:55
I received lots of media attention
from Italy and from abroad
from Italy and from abroad
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Recibín moita atención mediática
de Italia e do estranxeiro
de Italia e do estranxeiro
06:00
and I quickly received
more than 500,000 contacts --
more than 500,000 contacts --
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e máis de 500.000 persoas contactaron
comigo en moi pouco tempo
comigo en moi pouco tempo
06:06
emails, social networking --
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a través de correos, redes sociais...
06:08
most of them were a suggestion
on how to cure my cancer,
on how to cure my cancer,
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A maioría eran consellos de como
curar o meu cáncer,
curar o meu cáncer,
06:11
but more of them were about
how to cure myself
how to cure myself
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pero moitos máis eran sobre como
curarme a min mesmo
curarme a min mesmo
06:15
as a full individual.
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como persoa.
06:18
For example, many thousands of videos,
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Por exemplo, creáronse miles de vídeos,
06:22
images, pictures, art performances
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imaxes, fotos e representacións artísticas
06:26
were produced for La Cura.
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para La Cura.
06:28
For example, here we see
Francesca Fini in her performance.
Francesca Fini in her performance.
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Temos aquí o exemplo de Francesca Fini
e a súa actuación.
e a súa actuación.
06:33
Or, as artist Patrick Lichty has done:
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Ou o que fixo o artista Patrick Lichty:
06:37
He produced a 3D sculpture of my tumor
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Elaborou unha escultura en 3D do meu tumor
06:42
and put it on sale on Thingiverse.
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e púxoa á venta en Thingiverse.
06:44
Now you can have my cancer, too!
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Agora vós tamén podedes ter o meu cáncer!
06:47
(Laughter)
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(Risas)
06:49
Which is a nice thing,
if you think about it,
if you think about it,
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Se o pensades é algo xenial,
06:52
we can share our cancer.
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podemos compartir o mesmo cáncer.
06:56
And this was going on --
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E isto era o que estaba a ocorrer:
06:58
scientists, the traditional
medicine experts,
medicine experts,
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científicos, expertos en
medicina tradicional,
medicina tradicional,
07:02
several researchers, doctors --
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diversos investigadores, médicos...
07:03
all connected with me to give advice.
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Todos estaban conectados comigo
para aconsellarme.
para aconsellarme.
07:06
With all this information and support,
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Tendo toda esta información e apoio,
07:08
I was able to form a team
of several neurosurgeons,
of several neurosurgeons,
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fun quen de reunir a un
equipo de neurocirurxiáns,
equipo de neurocirurxiáns,
07:14
traditional doctors,
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médicos tradicionais,
07:16
oncologists, and several
hundred volunteers
hundred volunteers
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oncólogos e varios centos de voluntarios
07:23
with whom I was able to discuss
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cos que puiden falar sobre
07:26
the information I was receiving,
which is very important.
which is very important.
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a información que ía recibindo,
o que é moi importante.
o que é moi importante.
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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Xuntos, conseguimos formular
unha estratexia da miña propia curación
unha estratexia da miña propia curación
07:38
in many languages,
according to many cultures.
according to many cultures.
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en distintos idiomas e conforme
a distintas culturas.
a distintas culturas.
07:41
And the current strategy
spans the whole world
spans the whole world
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Así, a estratexia actual abrangue
o mundo enteiro
o mundo enteiro
07:45
and thousands of years of human history,
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e miles de anos de historia humana,
07:47
which is quite remarkable for me.
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cousa que atopo bastante impresionante.
07:49
[Surgery]
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[Cirurxía]
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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Por sorte, nas resonancias seguintes viuse
pouco ou ningún crecemento do cáncer.
pouco ou ningún crecemento do cáncer.
07:57
So I was able to take my time and choose.
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Polo que puiden tomar
o meu tempo para elixir.
o meu tempo para elixir.
08:00
I chose the doctor I wanted to work with,
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Elixín o médico co que quería traballar,
08:04
I chose the hospital I wanted to stay in,
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elixín o hospital no que quería estar,
08:06
and in the meanwhile, I was supported
by thousands of people,
by thousands of people,
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e todo mentres miles de
persoas me apoiaban
persoas me apoiaban
08:10
none of whom felt pity for me.
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sen sentir pena por min.
08:13
Everyone felt like they could
take an active role
take an active role
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Todo o mundo sentía
que podía ser de utilidade
que podía ser de utilidade
08:19
in helping me to get well,
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axudándome a recuperarme,
08:21
and this was the most important
part of La Cura.
part of La Cura.
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e esta foi a parte máis importante
de La Cura.
de La Cura.
08:26
What are the outcomes?
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Cales foron os resultados?
08:28
I'm fine, as you can see, pretty fine.
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Estou ben, como podedes ver, moi ben.
08:30
(Applause)
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(Aplausos)
08:35
I have excellent news:
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Recibín excelentes noticias
08:38
After the surgery --
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despois da cirurxía:
08:39
I have -- I had a very low-grade glioma,
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teño --vaia, tiña-- un glioma
de moi baixo grao,
de moi baixo grao,
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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que é un tipo de cáncer "bo"
que non crece moito.
que non crece moito.
08:49
I have completely changed
my life and my lifestyle.
my life and my lifestyle.
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Cambiei totalmente a miña vida
e o meu estilo de vida.
e o meu estilo de vida.
Todo o que fixen foi deseñado
para manterme implicado.
para manterme implicado.
08:54
Everything I did was thoughtfully
designed to get me engaged.
designed to get me engaged.
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[IMPLICADO]
09:00
Up until the very last few
minutes of the surgery,
minutes of the surgery,
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Xusto ata minutos antes da cirurxía,
09:04
which was very intense,
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que foi moi intensa,
09:06
a matrix of electrodes
was implanted in my brain
was implanted in my brain
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tiña unha rede de eléctrodos
conectados ao meu cerebro
conectados ao meu cerebro
09:10
from this side,
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neste lado,
09:12
to be able to build a functional map
of what the brain controls.
of what the brain controls.
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para poder construír un mapa funcional
do que o cerebro controla.
do que o cerebro controla.
09:17
And right before the operation,
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E xusto antes da operación,
09:20
we were able to discuss
the functional map of my brain
the functional map of my brain
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puidemos analizar este mapa
09:27
with the doctor, to understand
which risks I was running into
which risks I was running into
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co médico para entender
os riscos que ía correr
os riscos que ía correr
09:32
and if there were any I wanted to avoid.
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e se había algún que me gustaría evitar.
09:36
Obviously, there were.
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Obviamente, habíaos.
[Abrirse]
09:38
[Open]
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09:39
And this openness was really
the fundamental part of La Cura.
the fundamental part of La Cura.
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Esta apertura foi a verdadeira
clave de La Cura.
clave de La Cura.
09:44
Thousands of people shared
their stories, their experiences.
their stories, their experiences.
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Milleiros de persoas compartiron
as súas historias, as súas experiencias.
as súas historias, as súas experiencias.
09:49
Doctors got to talk with people
they don't usually consult
they don't usually consult
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Os médicos chegaron a falar con xente
á que habitualmente non consultarían
á que habitualmente non consultarían
09:54
when they think about cancer.
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cando se trata de cáncer.
09:59
I'm a self-founding,
continuous state of translation
continuous state of translation
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Creeime a min mesmo, estou
nun estado continuo de tradución
nun estado continuo de tradución
10:04
among many different languages,
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entre moitas linguaxes diferentes,
10:06
in which science meets emotion
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onde a ciencia se atopa coa emoción
10:10
and conventional research
meets traditional research.
meets traditional research.
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e a investigación convencional
coa tradicional.
coa tradicional.
10:14
[Society]
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[SOCIEDADE]
10:16
The most important thing of La Cura
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O punto clave de La Cura
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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foi sentirme parte dunha sociedade
verdadeiramente comprometida e conectada,
verdadeiramente comprometida e conectada,
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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cuxo benestar global depende
do de cada un dos seus individuos.
do de cada un dos seus individuos.
10:36
This global performance
is my open-source cure for cancer.
is my open-source cure for cancer.
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Esta actuación mundial é a miña
curación de código aberto para o cáncer.
curación de código aberto para o cáncer.
[CURACIÓN DE CÓDIGO ABERTO]
10:41
And from what I feel,
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E tal e como o sinto eu,
10:43
it's a cure for me, but for us all.
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é unha curación para min,
pero tamén para todos nós.
pero tamén para todos nós.
10:46
Thank you.
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Grazas.
10:47
(Applause).
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(Aplausos)
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