Salvatore Iaconesi: What happened when I open-sourced my brain cancer

Translator: Serv. de Norm. Lingüística U. de Santiago de Compostela Reviewer: Xusto Rodriguez

This back here was my brain cancer.

Este de aquí atrás foi o meu cáncer cerebral.

Isn't it nice?

É bonito, non si?

(Laughter)

(Risas)

The key phrase is "was,"

Aquí a palabra clave é "foi".

phew.

Ufff!

(Applause)

(Aplausos)

Having brain cancer was really, as you can imagine,

Ter cáncer cerebral foi, como podedes imaxinar,

shocking news for me.

unha noticia moi impactante para min.

I knew nothing about cancer.

Non sabía nada sobre o cáncer.

In Western cultures, when you have cancer,

Nas culturas occidentais, cando tes cáncer,

it's as if you disappear in a way.

[Desaparecer]

é, dalgún xeito, coma se desapareceras.

Your life as a complex human being is replaced by medical data:

A vida, a dun ser humano complexo, é substituída por datos médicos:

Your images, your exams, your lab values,

as túas radiografías, os exames médicos, os resultados de laboratorio,

a list of medicines.

a lista de medicinas...

[TODO]

And everyone changes as well.

E todo o mundo cambia tamén.

You suddenly become a disease on legs.

De súpeto convérteste nunha enfermidade con patas.

Doctors start speaking a language which you don't understand.

Os médicos comezan a falar un idioma que ti non entendes.

They start pointing their fingers

Empezan a sinalar co dedo

at your body and your images.

o teu corpo e as túas radiografías.

People start changing as well

A xente comeza a cambiar tamén

because they start dealing with the disease,

porque empezan a tratar coa enfermidade

instead of with the human being.

en vez de coa persoa.

They say, "What did the doctor say?"

Preguntan: "Que che dixo o médico?"

before even saying, "Hello."

incluso antes de dicir "Ola".

[PREGUNTAS]

And in the meanwhile,

Mentres tanto,

you're left with questions to which nobody gives an answer.

déixante con preguntas para as que ninguén ten resposta.

These are the "Can I?" questions:

Preguntas do tipo "Son quen de...?"

Can I work while I have cancer?

Son quen de traballar con cáncer?

Can I study? Can I make love? Can I be creative?

Son quen de estudar? De facer o amor? De ser creativo?

And you wonder, "What have I done to deserve this?"

Pregúntaste: "Que fixen eu para merecer isto?"

You wonder, "Can I change something about my lifestyle?"

Pregúntaste: "Podo cambiar algo no meu estilo de vida?"

You wonder, "Can I do something?

Pregúntaste: "Hai algo que poida facer?

Are there any other options?"

Hai algunha outra opción?"

[Hai algo que poida facer?]

And, obviously, doctors are the good guys in all these scenarios,

E, claro está, os médicos son os tipos bos en todos estes casos,

because they are very professional and dedicated to curing you.

porque son moi profesionais e comprometidos con curarte.

But they also are very used to having to deal with patients,

Pero tamén están moi acostumados a tratar con pacientes,

so I'd say that they sometimes lose the idea that this is torture for you

polo que eu diría que ás veces perden a perspectiva de que para ti é unha tortura

and that you become, literally, a patient --

e de que te convertes, literalmente, nun paciente.

"patient" means "the one who waits."

"Paciente" significa "o que espera".

(Laughter)

(Risas)

Things are changing, but classically,

As cousas están cambiando pero o típico

they tend to not engage you in any way to learn about your condition,

é que eviten implicarse de ningún xeito en coñecer a túa situación,

to get your friends and family engaged,

en facer partícipes á túa familia e amigos

or showing you ways in which you can change your lifestyle

ou en ensinarche algún xeito de modificar o teu estilo de vida

to minimize the risks of what you're going through.

para minimizar os riscos do que estás a pasar.

But instead, you're forced there to wait

Pero con todo, veste obrigado a agardar

in the hands of a series of very professional strangers.

nas mans dunha serie de estraños moi profesionais.

[AGARDAR]

While I was in the hospital,

Mentres estaba no hospital,

I asked for a printed-out picture of my cancer

pedín que me imprimiran a radiografía do meu cáncer

and I spoke with it.

e falei con el.

It was really hard to obtain,

Foi moi difícil conseguilo,

because it's not common practice to ask for a picture of your own cancer.

porque non é moi habitual pedir unha foto do teu propio cáncer.

I talked to it and I said,

Falei con el e díxenlle:

"Okay, cancer, you're not all there is to me.

"Moi ben, cáncer, ti non me representas.

There's more to me.

Eu son máis que isto.

A cure, whichever it is, will have to deal with the whole of me."

A cura, sexa cal sexa, terá que enfrontarse a todo o meu ser."

And so, the next day, I left the hospital against medical advice.

Así que ao día seguinte marchei do hospital malia a recomendación médica.

I was determined to change my relationship with the cancer

Estaba decidido a cambiar a miña relación co cáncer

and I was determined to learn more about my cancer

e estaba decidido a aprender máis sobre el

before doing anything as drastic as a surgery.

antes de facer algo tan drástico como unha cirurxía.

I'm an artist, I use several forms of open-source technologies

Son artista, uso varios tipos de tecnoloxías de código aberto

and open information in my practice.

e información aberta no meu traballo.

So my best bet was to get it all out there, get the information out there,

Polo que a miña grande aposta foi divulgar todo, divulgar a información,

and use it so that it could be accessed by anyone.

e facelo de tal forma que calquera puidese acceder a ela.

So I created a website, which is called La Cura,

Así, creei un sitio web chamado "La Cura",

on which I put my medical data, online.

onde publiquei os meus datos médicos na rede.

I actually had to hack it

En realidade tiven que piratealos

and that's a thing which we can talk about in another speech.

pero dese tema podemos falar noutra charla.

(Laughter)

(Risas)

I chose this word, La Cura --

Elixín esta palabra, "La Cura",

La Cura in Italian means "the cure" --

porque en italiano significa "curación"

because in many different cultures,

e porque en moitas culturas diferentes,

the word "cure" can mean many different things.

a palabra "curación" pode ter moitos significados.

In our Western cultures,

Na nosa cultura occidental

it means eradicating or reversing a disease,

significa erradicar ou facer retroceder á enfermidade,

but in different cultures,

pero noutras culturas distintas

for example, a culture from Asia,

como por exemplo as de Asia,

from the Mediterranean, from Latin countries, from Africa,

do Mediterráneo, dos países latinos ou de África,

it can mean many more things.

pode representar moitas outras cousas.

Of course, I was interested in the opinions of doctors

Por suposto que me interesaba a opinión dos médicos

and healthcare providers,

e do resto de profesionais da saúde,

but I was also interested in the cure of the artist, of the poet,

pero tamén me interesaba a curación proposta polo artista, polo poeta,

of the designer,

polo deseñador,

of, who knows, the musicians.

ou, por que non, polos músicos.

I was interested in the social cure,

Interesábame a curación social,

I was interested in the psychological cure,

interesábame a curación psicolóxica,

I was interested in the spiritual cure,

interesábame a curación espiritual,

I was interested in the emotional cure,

interesábame a curación emocional,

I was interested in any form of cure.

interesábame todo tipo de curación.

And, it worked.

E funcionou.

The La Cura website went viral.

O sitio "La Cura" deu a volta ao mundo.

I received lots of media attention from Italy and from abroad

Recibín moita atención mediática de Italia e do estranxeiro

and I quickly received more than 500,000 contacts --

e máis de 500.000 persoas contactaron comigo en moi pouco tempo

emails, social networking --

a través de correos, redes sociais...

most of them were a suggestion on how to cure my cancer,

A maioría eran consellos de como curar o meu cáncer,

but more of them were about how to cure myself

pero moitos máis eran sobre como curarme a min mesmo

as a full individual.

como persoa.

For example, many thousands of videos,

Por exemplo, creáronse miles de vídeos,

images, pictures, art performances

imaxes, fotos e representacións artísticas

were produced for La Cura.

para La Cura.

For example, here we see Francesca Fini in her performance.

Temos aquí o exemplo de Francesca Fini e a súa actuación.

Or, as artist Patrick Lichty has done:

Ou o que fixo o artista Patrick Lichty:

He produced a 3D sculpture of my tumor

Elaborou unha escultura en 3D do meu tumor

and put it on sale on Thingiverse.

e púxoa á venta en Thingiverse.

Now you can have my cancer, too!

Agora vós tamén podedes ter o meu cáncer!

(Laughter)

(Risas)

Which is a nice thing, if you think about it,

Se o pensades é algo xenial,

we can share our cancer.

podemos compartir o mesmo cáncer.

And this was going on --

E isto era o que estaba a ocorrer:

scientists, the traditional medicine experts,

científicos, expertos en medicina tradicional,

several researchers, doctors --

diversos investigadores, médicos...

all connected with me to give advice.

Todos estaban conectados comigo para aconsellarme.

With all this information and support,

Tendo toda esta información e apoio,

I was able to form a team of several neurosurgeons,

fun quen de reunir a un equipo de neurocirurxiáns,

traditional doctors,

médicos tradicionais,

oncologists, and several hundred volunteers

oncólogos e varios centos de voluntarios

with whom I was able to discuss

cos que puiden falar sobre

the information I was receiving, which is very important.

a información que ía recibindo, o que é moi importante.

And together, we were able to form a strategy for my own cure

Xuntos, conseguimos formular unha estratexia da miña propia curación

in many languages, according to many cultures.

en distintos idiomas e conforme a distintas culturas.

And the current strategy spans the whole world

Así, a estratexia actual abrangue o mundo enteiro

and thousands of years of human history,

e miles de anos de historia humana,

which is quite remarkable for me.

cousa que atopo bastante impresionante.

[Surgery]

[Cirurxía]

The follow-up MRIs showed, luckily, little to no growth of the cancer.

Por sorte, nas resonancias seguintes viuse pouco ou ningún crecemento do cáncer.

So I was able to take my time and choose.

Polo que puiden tomar o meu tempo para elixir.

I chose the doctor I wanted to work with,

Elixín o médico co que quería traballar,

I chose the hospital I wanted to stay in,

elixín o hospital no que quería estar,

and in the meanwhile, I was supported by thousands of people,

e todo mentres miles de persoas me apoiaban

none of whom felt pity for me.

sen sentir pena por min.

Everyone felt like they could take an active role

Todo o mundo sentía que podía ser de utilidade

in helping me to get well,

axudándome a recuperarme,

and this was the most important part of La Cura.

e esta foi a parte máis importante de La Cura.

What are the outcomes?

Cales foron os resultados?

I'm fine, as you can see, pretty fine.

Estou ben, como podedes ver, moi ben.

(Applause)

(Aplausos)

I had excellent news

Recibín excelentes noticias

after the surgery --

despois da cirurxía:

I have -- I had a very low-grade glioma,

teño --vaia, tiña-- un glioma de moi baixo grao,

which is a "good" kind of cancer which doesn't grow a lot.

que é un tipo de cáncer "bo" que non crece moito.

I have completely changed my life and my lifestyle.

Cambiei totalmente a miña vida e o meu estilo de vida.

Everything I did was thoughtfully designed to get me engaged.

Todo o que fixen foi deseñado para manterme implicado.

[IMPLICADO]

Up until the very last few minutes of the surgery,

Xusto ata minutos antes da cirurxía,

which was very intense,

que foi moi intensa,

a matrix of electrodes was implanted in my brain

tiña unha rede de eléctrodos conectados ao meu cerebro

from this side,

neste lado,

to be able to build a functional map of what the brain controls.

para poder construír un mapa funcional do que o cerebro controla.

And right before the operation,

E xusto antes da operación,

we were able to discuss the functional map of my brain

puidemos analizar este mapa

with the doctor, to understand which risks I was running into

co médico para entender os riscos que ía correr

and if there were any I wanted to avoid.

e se había algún que me gustaría evitar.

Obviously, there were.

Obviamente, habíaos.

[Open]

[Abrirse]

And this openness was really the fundamental part of La Cura.

Esta apertura foi a verdadeira clave de La Cura.

Thousands of people shared their stories, their experiences.

Milleiros de persoas compartiron as súas historias, as súas experiencias.

Doctors got to talk with people they don't usually consult

Os médicos chegaron a falar con xente á que habitualmente non consultarían

when they think about cancer.

cando se trata de cáncer.

I'm a self-founding, continuous state of translation

Creeime a min mesmo, estou nun estado continuo de tradución

among many different languages,

entre moitas linguaxes diferentes,

in which science meets emotion

onde a ciencia se atopa coa emoción

and conventional research meets traditional research.

e a investigación convencional coa tradicional.

[Society]

[SOCIEDADE]

The most important thing of La Cura

O punto clave de La Cura

was to feel like a part of a really engaged and connected society

foi sentirme parte dunha sociedade verdadeiramente comprometida e conectada,

whose wellness really depends on the wellness of all of its components.

cuxo benestar global depende do de cada un dos seus individuos.

This global performance is my open-source cure for cancer.

Esta actuación mundial é a miña curación de código aberto para o cáncer.

[CURACIÓN DE CÓDIGO ABERTO]

And from what I feel,

E tal e como o sinto eu,

it's a cure for me, but for us all.

é unha curación para min, pero tamén para todos nós.

Thank you.

Grazas.

(Applause).

(Aplausos)