ABOUT THE SPEAKER
Beth Malone - Social entrepreneur, artist
TED Resident Beth Malone brings bold art to public spaces across the US, encouraging artists to have a sense of humor, to be vulnerable and take creative risks.

Why you should listen

Beth Malone is executive director and partner at Dashboard US, an award-winning, experimental creative agency. Dashboard has presented exhibitions and special artist projects in cities around the country including New York, New Orleans, Atlanta, and Detroit. Dashboard has commissioned new, nontraditional works from over 200 artists.

Malone encourages artists to have a sense of humor, to be vulnerable and take creative risks, a practice she employed for herself when processing illness, caretaking and death. In 2014, she and her dad were sitting on a couch in a psychiatric hospital in Atlanta, GA. He looked at her and said, "I’m gonna be lost after this. After this, I’m gonna be gone." In August 2017, her dad passed away from frontotemporal lobe dementia -- just two months after she gave her TED Talk. It was a good death.

More profile about the speaker
Beth Malone | Speaker | TED.com
TED Residency

Beth Malone: How my dad's dementia changed my idea of death (and life)

Bet Maloun (Beth Malone): Kako je demencija mog tate promenila moju predstavu o smrti i životu

Filmed:
1,148,219 views

Sa toplinom i blagošću Bet Maloun priča duboko ličnu priču o borbi svog oca sa frontotemporalnom demencijom i o tome kako je ona promenila njen način razmišljanja o smrti i životu. Dirljiv govor o ljubavi ćerke, prihvatanju i nalaženju mira.
- Social entrepreneur, artist
TED Resident Beth Malone brings bold art to public spaces across the US, encouraging artists to have a sense of humor, to be vulnerable and take creative risks. Full bio

Double-click the English transcript below to play the video.

00:12
I've been doing some thinkingразмишљање.
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Razmišljala sam.
00:16
I'm going to killубиј my dadтата.
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Ubiću svog tatu.
00:19
I calledпозвани my sisterсестра.
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Pozvala sam sestru.
00:20
"Listen,
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„Slušaj.
00:21
I've been doing some thinkingразмишљање.
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Razmišljala sam.
00:24
I'm going to killубиј DadTata.
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Ubiću tatu.
00:27
I'm going to take him to OregonOregon,
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Odvešću ga u Oregon,
00:30
find some heroinheroina,
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naći ću heroin
00:32
and give it to him."
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i daću mu ga.“
00:34
My dadтата has frontotemporalprednjoj strani loberezanj dementiaDemencija,
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Moj tata ima frontotemporalnu demenciju,
00:36
or FTDFTD.
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ili FTD.
To je zbunjujuća bolest koja pogađa ljude
u 50-im ili 60-im godinama.
00:38
It's a confusingзбуњујуће diseaseболест
that hitsхитови people in theirњихова 50s or 60s.
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00:41
It can completelyу потпуности changeпромена
someone'sНеко је personalityличност,
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Može u potpunosti promeniti ličnost osobe,
00:44
makingстварање them paranoidparanoja and even violentнасилан.
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učinivši je paranoidnom, čak i nasilnom.
Moj tata je bio bolestan čitavu deceniju,
00:47
My dad'sТата је been sickболестан for a decadeдекада,
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1936
00:49
but threeтри yearsгодине agoпре he got really sickболестан,
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ali se pre tri godine baš razboleo
00:51
and we had to moveпотез him out of his houseкућа --
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i morali smo da ga iselimo
iz njegove kuće -
00:54
the houseкућа that I grewрастао up in,
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kuće u kojoj sam odrasla,
00:56
the houseкућа that he builtизграђен
with his ownвластити handsруке.
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kuće koju je izgradio svojim rukama.
00:59
My strappingStavljam, coolхладан dadтата
with the falsettomu singingпевање voiceглас
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Moj snažni, kul tata sa glasom u falsetu
01:04
had to moveпотез into a facilityобјекат
for round-the-clockstalna careнега
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morao je da se preseli
u ustanovu za danonoćnu negu
01:06
when he was just 65.
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kada je imao svega 65 godina.
01:10
At first my momмама and sistersсестре
and I madeмаде the mistakeгрешка
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Najpre smo moja mama i sestre
napravile grešku
01:13
of puttingстављање him in a regularредовно nursingstarački home.
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i smestile ga u običan starački dom.
01:16
It was really prettyприлично;
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Bilo je veoma lepo;
01:17
it had plushpliљ carpetтепих
and afternoonпоподневни artуметност classespredavanja
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imao je plišane tepihe,
popodnevne časove umetnosti
01:20
and a dogпас namedназван DianeDiane.
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i psa po imenu Dajana.
01:23
But then I got a phoneтелефон call.
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Ali, onda sam dobila telefonski poziv.
01:26
"MsMS. MaloneMalone, we'veми смо arrestedУхапшен your fatherотац."
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„Gospođice Maloun,
uhapsili smo vašeg oca.“
01:30
"What?"
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„Šta?“
01:32
"Well, he threatenedпретио
everybodyсвима with cutlerypribor za jelo.
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„Pa, svima je pretio priborom za jelo.
01:36
And then he yankedзанкирао
the curtainszavese off the wallзид,
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Zatim je istrgao zavese sa zidova,
01:39
and then he triedПокушали
to throwбацање plantsбиљке out the windowпрозор.
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a onda je pokušao
da baci biljke kroz prozor.
01:42
And then, well, he pulledвуче all
the oldстари ladiesдаме out of theirњихова wheelchairsинвалидски колица."
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A potom, pa, izvukao
je sve starice iz kolica.“
01:49
"All the oldстари ladiesдаме?"
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„Sve starice?“
01:50
(LaughterSmeh)
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(Smeh)
01:51
"What a cowboykauboj."
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„Kakav kauboj.“
01:53
(LaughterSmeh)
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(Smeh)
01:54
After he got kickedкицкед out of there,
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Nakon što su ga izbacili odatle,
01:56
we bouncedodbilo him betweenизмеђу
a bunchгомилу of state-rundržavna facilitiesобјеката
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prebacivale smo ga više puta
u gomilu državnih ustanova
01:59
before findingпроналажење a treatmentтретман centerцентар
specificallyпосебно for people with dementiaDemencija.
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dok nismo našle centar za lečenje
posebno namenjen ljudima sa demencijom.
02:03
At first, he kindкинд of likedволи it,
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U početku nam se dopao,
ali je vremenom njegovo zdravlje oslabilo
02:05
but over time his healthздравље declinedOdbili su,
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02:07
and one day I walkedходао in
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i jednog dana sam ušla
02:08
and foundнашао him sittingседење hunchedухваћен over
on the groundземља wearingноси a onesiekombinezonu --
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i pronašla ga kako sedi zgrčen na zemlji
dok je nosio kombinezon -
02:12
those kindsврсте of outfitskostimi
that zipзип in the back.
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ona odela koja se zatvaraju
rajsferšlusom pozadi.
02:17
I watchedгледао him for about an hourсат
as he yankedзанкирао at it,
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Posmatrala sam ga
oko sat vremena dok ga je vukao,
02:21
tryingпокушавајући to find a way out of this thing.
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pokušavajući da se izvuče iz toga.
02:24
And it's supposedпретпостављено to be practicalпрактично,
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Trebalo bi da bude praktično,
02:26
but to me it lookedпогледао like a straightjacketludaиku koљulju.
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ali meni je izgledalo kao ludačka košulja.
02:29
And so I ranтрчао out.
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Zato sam istrčala.
02:32
I left him there.
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Ostavila sam ga tamo.
Sedela sam u svom kamionu -
njegovom starom kamionu, pogurena,
02:35
I satсат in my truckкамион -- his oldстари truckкамион --
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02:37
hunchedухваћен over,
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02:39
this really deepдубоко gutturalgrlen cryплач
comingдолазе out of the pitjama of my bellyстомак.
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dok je duboki grleni vapaj
dopirao iz moje stomačne duplje.
02:43
I just couldn'tније могао believe that my fatherотац,
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Jednostavno nisam mogla
da poverujem da bi moj otac,
02:47
the AdonisAdonis of my youthмлади,
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Adonis moje mladosti,
02:50
my really dearдрага friendпријатељ,
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moj veoma dragi prijatelj,
02:53
would think that this kindкинд of life
was worthвреди livingживи anymoreвише.
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smatrao da je ovakav život
više vredan življenja.
02:58
We're programmedпрограмирано
to prioritizeприоритет productivityпродуктивност.
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Programirani smo da dajemo
prioritet produktivnosti.
03:02
So when a personособа --
an AdonisAdonis in this caseслучај --
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Zato kada osoba - Adonis u ovom slučaju -
03:06
is no longerдуже productiveпродуктиван
in the way we expectочекујте him to be,
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više nije produktivna
onako kako to očekujemo od nje,
03:09
the way that he expectsočekuje da će himselfсам to be,
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onako kako ona očekuje od sebe,
03:12
what valueвредност does that life have left?
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kakva vrednost preostaje tom životu?
03:15
That day in the truckкамион,
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Tog dana u kamionu
03:17
all I could imagineзамислити
was that my dadтата was beingбиће torturedмучен
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jedino o čemu sam mogla da mislim
jeste da se moj tata muči
03:21
and his bodyтело was
the vesselпловило of that tortureмучење.
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i da je njegovo telo nosilac tog mučenja.
03:26
I've got to get him out of that bodyтело.
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Moram da ga izbavim iz tog tela.
03:28
I've got to get him out of that bodyтело;
I'm going to killубиј DadTata.
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Moram da ga izbavim
iz tog tela; ubiću tatu.
03:32
I call my sisterсестра.
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Pozvala sam sestru.
03:35
"BethBet," she said.
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„Bet“, rekla je.
„Ne želiš da provedeš ostatak života
03:40
"You don't want
to liveживи the restодмор of your life
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znajući da si ubila svog oca.
03:42
knowingзнајући that you killedубијен your fatherотац.
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03:44
And you'dти би be arrestedУхапшен I think,
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Mislim i da bi bila uhapšena,
03:46
because he can't condoneodobravam it.
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jer on to ne može da odobri.
03:48
And you don't even know
how to buyкупити heroinheroina."
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A ti čak ni ne znaš kako da kupiš heroin.“
03:50
(LaughterSmeh)
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(Smeh)
03:51
It's trueистина, I don't.
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Istina je, ne znam.
03:53
(LaughterSmeh)
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(Smeh)
Istina je da mi mnogo pričamo
o njegovoj smrti.
03:56
The truthистина is we talk
about his deathсмрт a lot.
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03:58
When will it happenдесити се? What will it be like?
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Kada će se desiti? Kako će to izgledati?
04:00
But I wishжелети that we would have talkedпричао
about deathсмрт when we were all healthyздрав.
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Ali, volela bih kada bismo svi razgovarali
o smrti dok smo zdravi.
04:04
What does my bestнајбоље deathсмрт look like?
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Kako izgleda moja najbolja verzija smrti?
04:07
What does your bestнајбоље deathсмрт look like?
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Kako izgleda vaša najbolja verzija smrti?
04:10
But my familyпородица didn't know to do that.
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Ali, moja porodica nije umela to da uradi.
04:13
And my sisterсестра was right.
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Moja sestra je bila u pravu.
04:15
I shouldn'tне би требало murderубиство DadTata with heroinheroina,
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Ne treba da ubijem tatu heroinom,
04:18
but I've got to get him out of that bodyтело.
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ali moram da ga izvučem iz tog tela.
04:22
So I wentотишао to a psychicvidovnjak.
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Otišla sam kod vidovnjaka,
zatim kod sveštenika,
pa onda u grupu za podršku,
04:24
And then a priestсвештеник,
and then a supportподршка groupгрупа,
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04:26
and they all said the sameисти thing:
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i svi su govorili jedno te isto:
04:28
sometimesпонекад people hangвиси on
when they're worriedзабринуто about lovedвољен onesоне.
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ponekad se ljudi čvrsto drže u životu
kada su zabrinuti za svoje voljene.
04:31
Just tell them you're safeсигурно,
and it's OK to go when you're readyспреман.
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Samo im recite da ste bezbedni
i da je u redu da odu kad su spremni.
04:35
So I wentотишао to see DadTata.
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Otišla sam da vidim tatu.
04:37
I foundнашао him hunchedухваћен over
on the groundземља in the onesiekombinezonu.
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Zatekla sam ga zgrčenog
na zemlji u kombinezonu.
04:40
He was staringзурење pastпрошлост me
and just kindкинд of looking at the groundземља.
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Zurio je mimo mene
i nekako gledao u zemlju.
04:43
I gaveдала him a gingerGinger alepivo
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Dala sam mu sok od đumbira
04:44
and just startedпочела talkingпричају
about nothing in particularпосебно,
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i samo počela da pričam
ni o čemu naročito,
04:47
but as I was talkingпричају,
he sneezedkinuo from the gingerGinger alepivo.
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ali dok sam pričala,
kinuo je zbog soka sa đumbirom.
04:52
And the sneezekijanje --
it jerkedizdrkali his bodyтело uprightусправно,
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Od kijanja mu se telo trglo
u uspravan položaj,
04:55
sparkingспаркинг him back to life a little bitмало.
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malo ga povrativši u život.
04:57
And he just keptчува drinkingпити and sneezingкијавица
and sparkingспаркинг, over and over and over again
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Nastavio je da pije,
kija i trza se iznova i iznova,
05:02
untilсве док it stoppedпрестала.
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dok nije prestalo.
05:05
And I heardслушао,
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Čula sam:
05:07
"HehehehehehHeheheheheh,
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„Heheheheheh,
05:09
hehehehehehheheheheheh ...
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heheheheheh.
05:12
this is so fabulousсјајно.
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Ovo je tako fantastično.
05:15
This is so fabulousсјајно."
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Ovo je tako fantastično.“
05:18
His eyesочи were openотворен
and he was looking at me,
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Oči su mu bile otvorene
i gledao je u mene.
05:21
and I said, "HiZdravo, DadTata!"
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Rekla sam: „Zdravo, tata!“,
05:23
and he said, "HiyaZdravo, BethBet."
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a on je rekao: „Zdravo, Bet.“
05:27
And I openedотворен my mouthуста to tell him, right?
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Otvorila sam usta da mu kažem:
05:29
"DadTata, if you want to dieумрети, you can dieумрети.
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„Tata, ako hoćeš, možeš da umreš.
05:32
We're all OK."
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Svi smo u redu.“
05:33
But as I openedотворен my mouthуста to tell him,
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Ali, čim sam otvorila usta da mu kažem,
05:35
all I could say was, "DadTata!
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jedino što sam mogla
da izgovorim bilo je: „Tata!
05:40
I missГоспођица you."
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Nedostaješ mi.“
05:42
And then he said, "Well, I missГоспођица you, too."
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A on je tad rekao:
„Pa, nedostaješ i ti meni.“
05:44
And then I just fellпао over
because I'm just a messнеред.
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Onda sam se samo sručila
jer sam prosto u haosu.
05:47
So I fellпао over and I satсат there with him
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Sručila sam se i sedela sa njim
05:52
because for the first time in a long time
he seemedизгледало је kindкинд of OK.
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jer je prvi put posle dugo vremena
nekako izgledao u redu.
05:56
And I memorizedZapamtio his handsруке,
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Upamtila sam njegove ruke,
05:59
feelingОсећај so gratefulзахвални that his spiritдух
was still attachedу прилогу to his bodyтело.
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dok sam osećala toliku zahvalnost
što je njegov duh još vezan za telo.
06:05
And in that momentтренутак I realizedреализован
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U tom trenutku sam shvatila
06:08
I'm not responsibleодговоран for this personособа.
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da ja nisam odgovorna za ovu osobu.
06:11
I'm not his doctorдоктор,
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Nisam njegov doktor,
06:13
I'm not his motherмајка,
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nisam njegova majka,
06:15
I'm certainlyсигурно not his God,
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zasigurno nisam njegov bog,
06:17
and maybe the bestнајбоље way to help him and me
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i možda je najbolji način
da pomognem i njemu i sebi
06:21
is to resumebiografija our rolesулоге
as fatherотац and daughterћерка.
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da nastavim sa našim ulogama oca i ćerke.
06:25
And so we just satсат there,
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I tako smo samo sedeli,
06:27
calmмирно and quietтихо like we'veми смо always doneГотово.
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mirni i tihi kao i uvek.
06:30
NobodyNiko nije was productiveпродуктиван.
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Niko nije bio produktivan.
06:32
BothOboje of us are still strongјак.
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Oboje smo još jaki.
06:37
"OK, DadTata. I'm going to go,
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„U redu, tata.
Idem, ali vidimo se sutra.“
06:40
but I'll see you tomorrowсутра."
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06:43
"OK," he said.
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„U redu“, rekao je.
06:46
"Hey,
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„Hej,
06:48
this is a prettyприлично niceлеп haciendaHaciende."
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ovo je baš fina hacijenda.“
06:51
Thank you.
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Hvala.
06:53
(ApplauseAplauz)
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(Aplauz)
Translated by Ivana Krivokuća
Reviewed by Tijana Mihajlović

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ABOUT THE SPEAKER
Beth Malone - Social entrepreneur, artist
TED Resident Beth Malone brings bold art to public spaces across the US, encouraging artists to have a sense of humor, to be vulnerable and take creative risks.

Why you should listen

Beth Malone is executive director and partner at Dashboard US, an award-winning, experimental creative agency. Dashboard has presented exhibitions and special artist projects in cities around the country including New York, New Orleans, Atlanta, and Detroit. Dashboard has commissioned new, nontraditional works from over 200 artists.

Malone encourages artists to have a sense of humor, to be vulnerable and take creative risks, a practice she employed for herself when processing illness, caretaking and death. In 2014, she and her dad were sitting on a couch in a psychiatric hospital in Atlanta, GA. He looked at her and said, "I’m gonna be lost after this. After this, I’m gonna be gone." In August 2017, her dad passed away from frontotemporal lobe dementia -- just two months after she gave her TED Talk. It was a good death.

More profile about the speaker
Beth Malone | Speaker | TED.com