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

Translator: Hans Eg Loekkegaard Reviewer: Anders Finn Jørgensen

This back here was my brain cancer.

Billedet her bag mig, var min hjernekræft.

Isn't it nice?

Er den ikke bare flot?

(Laughter)

(Latter)

The key phrase is "was,"

Nøgleordet her er, "var" min hjernekræft

phew.

puha...

(Applause)

(Bifald)

Having brain cancer was really, as you can imagine,

Det at have hjernekræft var virkelig, som du kan forestille dig

shocking news for me.

chokerende nyheder for mig.

I knew nothing about cancer.

Jeg vidste ingenting omkring kræft.

In Western cultures, when you have cancer,

Når du har kræft i vestlige kulturer,

it's as if you disappear in a way.

er det lidt som om du forsvinder.

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

Dit liv som et komplekst menneske bliver erstattet med data:

Your images, your exams, your lab values,

Dine røntgenbilleder, undersøgelser dine laboratorieprøver

a list of medicines.

en liste af din medicinering.

And everyone changes as well.

Og alle omkring dig ændrer sig.

You suddenly become a disease on legs.

Du bliver pludselig en sygdom på to ben.

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

Dine læger begynder at snakke et sprog du ikke rigtig forstår.

They start pointing their fingers

De peger fingre,

at your body and your images.

af din krop og dine røntgenbilleder.

People start changing as well

Folk begynder også at ændrer sig

because they start dealing with the disease,

fordi de begynder at arbejde med sygdommen,

instead of with the human being.

istedet for mennesket.

They say, "What did the doctor say?"

De siger, "Hvad sagde lægen?"

before even saying, "Hello."

før de endda siger, "Hallo."

And in the meanwhile,

Og i mellemtiden,

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

sidder du tilbage med alle disse spørgsmål som ingen giver dig svaret til.

These are the "Can I?" questions:

Den slags spørgsmål der siger, "Hvad kan jeg?"

Can I work while I have cancer?

Kan jeg arbejder mens jeg har kræft?

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

Kan jeg studere? Kan jeg have samleje? Kan jeg være kreativ?

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

Og du begynder at tænke, "Hvad har jeg gjort for at fortjene det her?"

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

Du tænker, "Kan jeg ændre nogen ting i min tilværelse?"

You wonder, "Can I do something?

Du tænker, "Kan jeg gøre noget som helst?

Are there any other options?"

Er der nogle andre muligheder?"

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

Lægerne er selvfølgelig "the good guys" i disse scenarier,

because they are very professional and dedicated to curing you.

fordi de er jo professionelle and dedikeret til at helbrede dig.

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

Men de er også utrolig vante til at arbejde med patienter,

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

hvilket betyder de ind imellem glemmer at dette er rent tortur for dig

and that you become, literally, a patient --

og at du helt literalt bliver, en patient -

"patient" means "the one who waits."

"patient" betyder "den som venter".

(Laughter)

(Latter)

Things are changing, but classically,

Tingene er ved at ændre sig, men historisk,

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

så har de en tendens til ikke at give dig noget indsigt ind til din tilstand,

to get your friends and family engaged,

få dine venner og familie involveret,

or showing you ways in which you can change your lifestyle

eller vise dig nogle måder du kan ændre din livsstil

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

for at reducere den risiko du går igennem.

But instead, you're forced there to wait

Men istedet er du tvunget til at vente

in the hands of a series of very professional strangers.

i hænderne på adskillige meget professionelle fremmede.

While I was in the hospital,

Mens jeg var på hospitalet,

I asked for a printed-out picture of my cancer

spurgte jeg efter en printet kopi af min kræft

and I spoke with it.

og jeg snakkede med den.

It was really hard to obtain,

Det var utrolig svært at få fat på i øvrigt,

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

da det var ikke normal praksis at bede om et billede af din kræft.

I talked to it and I said,

Jeg snakkede med den og sagde,

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

"Okay kræft, jeg er mere end bare dig.

There's more to me.

Jeg har mere i mig end dig."

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

En kur hvad enten den er, skal håndtere hele min person.

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

Den næste dag, forlod jeg hospitalet imod deres anbefaling.

I was determined to change my relationship with the cancer

Jeg havde besluttet at ændre mit forhold med min kræft

and I was determined to learn more about my cancer

og ville målbevidst lære mere om min kræft

before doing anything as drastic as a surgery.

før jeg ville gå igennem noget så drastisk som en operation.

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

Jeg er en kunster og bruger flere forskellige Open Source-teknologier

and open information in my practice.

og tilgængelig information i mit erhverv.

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

Så mit bedste bud var at få det hele ud af døren, få dataen ud i verdenen

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

og bruge det på den måde at alle kunne få adgang til det.

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

Jeg lavede en hjemmeside som blev kaldt La Cura,

on which I put my medical data, online.

hvor jeg så gemte min medicinske optegnelser.

I actually had to hack it

Jeg var faktisk nødt til at "hacke" dataene,

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

men det er en ting vi kan tale om i en anden samtale.

(Laughter)

(Latter)

I chose this word, La Cura --

Jeg havde kaldt hjemmesiden La Cura.

La Cura in Italian means "the cure" --

La Cura på Italiensk betyder "kuren".,

because in many different cultures,

fordi for mange forskellige kulturer

the word "cure" can mean many different things.

har ordet "kur" en helt anden definition og betydning.

In our Western cultures,

I den Vestlige kultur,

it means eradicating or reversing a disease,

betyder "kur" udryddelsen eller afbrydelsen af en sygdom,

but in different cultures,

men i andre kulturer,

for example, a culture from Asia,

f.eks. det kunne være en kultur i Asien,

from the Mediterranean, from Latin countries, from Africa,

Middelhavet, Latinamerika eller Afrika

it can mean many more things.

kan det have mange andre betydninger.

Of course, I was interested in the opinions of doctors

Selvfølgelig var jeg interesseret i lægernes opfattelse

and healthcare providers,

og meninger fra udbydere af sundhedspleje,

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

men jeg var også interesseret i kunstnerens kur, poetens kur,

of the designer,

i designerens kur

of, who knows, the musicians.

eller en musikers kur.

I was interested in the social cure,

Jeg var interesseret i den sociale kur

I was interested in the psychological cure,

og den psykologiske kur.

I was interested in the spiritual cure,

Jeg var interesseret i den spirituelle kur.

I was interested in the emotional cure,

Jeg var interesseret i den følelsesmæssige kur.

I was interested in any form of cure.

Fundamentalt var jeg interesseret i hvilken som helst kur.

And, it worked.

Og, det fungerede.

The La Cura website went viral.

La Cura hjemmesiden gik viral.

I received lots of media attention from Italy and from abroad

Jeg modtog masser af interesse fra pressen fra Italien og udenlandsk

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

og fik hurtig mere end 500,000 henvendelser

emails, social networking --

fra emails, social media osv.

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

Mange af dem var forslag på hvordan kræften kunne helbedres,

but more of them were about how to cure myself

men de fleste var mere omkring hvordan jeg kunne helbrede mig selv

as a full individual.

som et individ og person.

For example, many thousands of videos,

F.eks. tusindvis af videoklip,

images, pictures, art performances

billeder, fotografier, kunstfremvisninger

were produced for La Cura.

blev produceret for La Cura.

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

Her er et eksempel af Francesca Fini i hendes fremvisning.

Or, as artist Patrick Lichty has done:

Et andet eksempel var Patrick Lichty,

He produced a 3D sculpture of my tumor

han lavede en 3D skulptur af min svulst

and put it on sale on Thingiverse.

og satte den op for salg på Thingiverse.

Now you can have my cancer, too!

Køb, nu kan du også have min kræft!

(Laughter)

(Latter)

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

Hvilket er trøstende, hvis du tænker over det,

we can share our cancer.

vi kan dele vores kræft.

And this was going on --

Og det her blev større og større

scientists, the traditional medicine experts,

jeg hørte fra professorer, traditionelle medicinske eksperter,

several researchers, doctors --

adskillige forskere, læger

all connected with me to give advice.

alle tog kontakt med mig for at give deres råd.

With all this information and support,

Med al denne information og support

I was able to form a team of several neurosurgeons,

var jeg istand til at samle et hold af adskillige neurokirurger,

traditional doctors,

traditionelle doktorer,

oncologists, and several hundred volunteers

onkologer og mange hundrede frivillige

with whom I was able to discuss

med hvem jeg kunne diskutere

the information I was receiving, which is very important.

den information jeg modtog, hvilket var utrolig vigtigt.

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

Og sammen var vi istand til at formulere en strategi for min egen kur

in many languages, according to many cultures.

i mange forskellige sprog fra adskillige kulturer.

And the current strategy spans the whole world

Den nuværende strategi omfatter nu hele verden

and thousands of years of human history,

og årevis af fælles historie

which is quite remarkable for me.

hvilket er helt bemærkelsesværdigt for mig.

[Surgery]

[Operationen]

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

Min efterfølgende MRI viste, heldigvis, lidt til ingen vækst af min kræft.

So I was able to take my time and choose.

Så jeg var istand til at tage min tid før operationen

I chose the doctor I wanted to work with,

Jeg valgte den doktor, jeg ville arbejde med.

I chose the hospital I wanted to stay in,

Jeg valgte det hospital, jeg havde mest lyst til.

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

Alt imens jeg blev supporteret af tusindvis af folk,

none of whom felt pity for me.

men ingen som følte medlidenhed.

Everyone felt like they could take an active role

Alle havde en klar følelse af at de tog en aktiv rolle

in helping me to get well,

i at hjælpe mig med at få det bedre

and this was the most important part of La Cura.

og dette var den mest vigtigste del af La Cura.

What are the outcomes?

Hvad er resultaterne?

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

Jeg har det godt, som i kan se, ret godt.

(Applause)

(Bifald)

I had excellent news

Jeg har haft fantastiske nyheder siden operationen.

after the surgery --

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

Jeg havde kun en lille ufarlig glioma

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

hvilket er en "god" slags kræft hvilket ikke vokser meget.

I have completely changed my life and my lifestyle.

Jeg har fuldstændig ændret mit liv og min livsstil.

Everything I did was thoughtfully designed to get me engaged.

Alting fra La Cura var designet med omtanke for at have mig engageret

Up until the very last few minutes of the surgery,

helt indtil de helt sidste minutter af min operation,

which was very intense,

hvilket var meget intens.

a matrix of electrodes was implanted in my brain

En matrix af elektroder var implanteret i min hjerne,

i denne side,

from this side,

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

for at bygge et funktionelt kort op af hvordan min hjerne reagerede.

And right before the operation,

Og op indtil kun sekunder før operationen

we were able to discuss the functional map of my brain

var vi i stand til at diskutere dette funktionelle kort af min hjerne,

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

med lægerne, for at forstå hvilken risko jeg var ude i

and if there were any I wanted to avoid.

og hvis der var nogle risici jeg gerne ville undgå.

Obviously, there were.

Selvfølgelig, var der det.

[Open]

[Åbenhed]

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

Denne åbenhed var virkelig den fundamentale del af La Cura.

Thousands of people shared their stories, their experiences.

Tusindvis af folk delte deres historier, deres erfaringer.

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

Læger fik en chance for at snakke med folk de ikke typisk konsultere

when they think about cancer.

når de tænker på og arbejder med kræft.

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

Jeg ser mig selv som en autonom stiftelse, en løbende tilstand af oversættelse

among many different languages,

blandt mange forskellige sprog,

in which science meets emotion

hvor videnskab møder sindsbevægelser

and conventional research meets traditional research.

og konventionel forskning møder traditionel forskning.

[Society]

[Samfund]

The most important thing of La Cura

Et andet meget vigtig element af La Cura

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

var at føle sig som en del af et utrolig engageret og tilsluttet samfund

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

hvis velvære var afhængig af velværet af alle dets komponenter.

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

Denne globale orkestrering er min Open-Source kur for kræft,

And from what I feel,

Og som jeg føler det,

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

er det ikke blot en kur for mig, men for os alle.

Thank you.

Tak skal i have.

(Applause).

(Bifald)