How I help people understand vitiligo | Lee Thomas

Prevodilac: Kristina Radosavljević Lektor: Ivana Krivokuća

When I was young,

Kada sam bio mlad,

I wanted to be on TV:

želeo sam da budem na TV-u:

the lights, the cameras,

svetla, kamere,

the makeup,

šminka,

the glamorous life.

glamurozan život.

And from my vantage point,

Sa moje tačke gledišta,

just outside of a military base in Lawton, Oklahoma,

odmah do vojne baze u Latonu u Oklahomi,

I didn't make the distinction between TV reporter or actor.

nisam pravio razliku između TV reportera i glumca.

It was all the same to me.

Za mene je to bilo isto.

It was either,

Bilo je ili:

"Reporting live from Berlin"

„Izveštavamo uživo iz Berlina”

or "I shall attend her here and woo her with such spirit when she comes."

ili „Čekaću je ovde i oboriti s nogu sa takvim duhom kad dođe.”

(Laughter)

(Smeh)

It was all special,

Sve je bilo posebno.

it was all the spotlight,

Sve je bilo pod reflektorima

and I just knew that it was for me.

i ja sam jednostavno znao da je to za mene.

But somewhere along my journey,

Ali negde na mom putu,

life happened.

desio se život.

Ah, much better.

Ah, mnogo bolje.

(Applause)

(Aplauz)

I have a disease called vitiligo.

Imam bolest koja se zove vitiligo.

It started early in my career.

Počela je rano u mojoj karijeri.

It's an autoimmune disorder.

To je autoimuni poremećaj.

It's where it looks like your skin is getting white patches,

Izgleda kao da vaša koža dobija bele fleke,

but it's actually void of color.

a u stvari je odsustvo boje.

It affects all ethnicities,

Pogađa sve nacionalnosti,

it affects all ages,

sve uzraste,

all genders,

sve rodove,

it's not contagious,

nije zarazna,

it's not life-threatening,

nije smrtonosna,

but it is mental warfare.

ali stvara mentalni rat.

It's tough.

Teško je.

Now, I was diagnosed with this disease

Ova bolest mi je utvrđena

kada sam radio „Vesti očevidaca” u Njujorku.

when I was working on "Eyewitness News" in New York City.

I was in the biggest city in the country,

Bio sam u najvećem gradu u zemlji,

I was on their flagship station

na njihovoj vodećoj TV stanici

and I was on their top-rated 5pm newscast.

i bio sam među najpopularnijim članovima ekipe vesti u pet popodne.

And the doctor looked me right in the eye and said,

Doktor me je pogledao pravo u oči i rekao:

"You have a disease called vitiligo.

„Imate bolest koja se zove vitligo.

It's a skin disorder where you lose your pigment.

To je kožni poremećaj usled koga gubite pigment.

There is no cure, but there a-la-la-la-la".

Ne postoji lek, ali ima bla-bla-bla.”

Charlie Brown's teacher.

Učitelj Čarlija Brauna.

(Laughter)

(Smeh)

He said there is no cure. All I heard was, "My career is over."

Rekao je da ne postoji lek.

I sve što sam ja čuo je: „Moja karijera je gotova”.

But I just couldn't give up.

Ali nisam se mogao predati.

I couldn't quit,

Nisam mogao odustati,

because we put too much into this.

zato što smo mi suviše uložili u ovo.

And by "we" I mean Mr. Moss,

Pod „mi” mislim na gospodina Mosa,

who sent me to speech and drama club instead of to detention,

koji me je slao u govorničku i dramsku sekciju, umesto kažnjavanja,

or my sister who paid part of my college expenses,

ili na moju sestru koja je platila deo moje fakultetske školarine,

or my mom,

ili na moju mamu,

who simply gave me everything.

koja mi je prosto dala sve.

I would not quit.

Nisam želeo da odustanem.

So I decided to just put on makeup and keep it moving.

Zato sam odlučio da stavim šminku i nastavim da radim.

I had to wear makeup anyway. It's TV, baby, right?

Morao sam ionako da nosim šminku. To je TV, dušo, zar ne?

I just put on a little more makeup, and everything's cool.

Samo sam stavljao malo više šminke i sve je bilo odlično.

And that actually went very well for years.

To je u suštini godinama odlično funkcionisalo.

I went from being a reporter in New York City

Od reportera u Njujorku

to being a morning show anchor in Detroit,

dogurao sam do voditelja jutarnjeg programa u Detroitu,

the Motor City.

gradu motora.

And as the disease got worse,

Kako je bolest napredovala,

I just put on more makeup.

stavljao sam sve više šminke.

It was easy.

Bilo je jednostavno.

Except for my hands.

Osim ruku.

See, this disease is progressive and ever-changing.

Bolest je takva da se širi i stalno menja mesto.

That means it comes and goes.

To znači da dolazi i odlazi.

At one point, for about a year and a half,

U jednom momentu, tokom oko godinu i po,

my face was completely white.

moje lice je bilo potpuno belo.

Yeah, it trips me out too.

Da, i mene to plaši.

(Laughter)

(Smeh)

Yeah.

Da.

And then, with a little help,

Zatim se, uz malu pomoć,

some of the pigment came back,

deo pigmenta vratio,

but living through this process

ali proživljavati ovaj proces

was like two sides of a coin.

je bilo kao dve strane istog novčića.

When I'm at work and I'm wearing the makeup

Kada sam na poslu i nosim šminku,

ili je nosim van posla, ja sam tip sa TV-a.

or wearing the makeup outside, I'm the TV guy.

"Hey, how you doing everybody? Great."

„Hej, kako ste, ljudi? Odlično.”

At home without the makeup,

Kod kuće, bez šminke,

I'd take it off and it was like being a leper.

skinuo bih je i osećao se kao gubavac.

The stares, constantly staring at me,

Ljudi koji konstantno bulje u mene,

the comments under their breath.

komentari kroz šaputanja.

Some people refused to shake my hand.

Neki su odbijali da se rukuju sa mnom.

Some people moved to the other side of the sidewalk,

Neki bi se sklanjali na drugu stranu trotoara,

moved to the other side of the elevator.

pomerali u drugu stranu lifta.

I felt like they were moving to the other side of life.

Imao sam osećaj kao da se pomeraju na drugu stranu života.

It was tough,

Bilo je teško,

and those were some tough years.

i to su bile teške godine.

And honestly,

Iskreno,

sometimes I just had to shelter in place.

ponekad sam morao da tražim utočište.

You know what I mean?

Znate šta to znači?

Kind of just stay at home till I get my mind right.

Znači da bih ostajao u kući dok ne sredim misli.

But then I'd put my blinders back on,

Onda bih ponovo stavio svoje naočnjake,

I'd get back out there,

vratio se tamo

do my thing,

i nastavio da radim,

but in the process of doing that,

ali u tom procesu

I developed this --

sam razvio neko

angry, grumpy demeanor.

besno i džangrizavo ponašanje.

Anger is an easy go-to,

Bes je bio lagano rešenje,

and people would leave me alone,

i ljudi bi me ostavljali na miru,

but it just wasn't me.

ali to jednostavno nisam bio ja.

It wasn't me.

To nisam bio ja.

I was allowing this disease to turn me into this angry, grumpy, spotted guy.

Dozvoljavao sam bolesti da me pretvori u besnog, namrgođenog, tačkastog tipa.

It just wasn't me.

To nisam bio ja.

So I had to change.

Morao sam da se promenim.

I knew I could not change other people.

Znao sam da ne mogu da menjam druge ljude.

People are going to react and do what they gonna do.

Ljudi će reagovati i raditi onako kako oni hoće.

But there was a cold hard reality as well.

Ali postojala je još jedna strašna i teška činjenica.

I was the one

Ja sam bio taj

that was showing anger, sadness

koji je pokazivao bes i tugu

and isolating myself.

i koji je izolovao sebe.

It was actually a choice.

To je u suštini bio izbor.

I was walking out the door every day

Svakoga dana bih izlazio napolje

expecting the world to react with negativity,

očekujući da će svet reagovati negativno,

so I just gave them that mean face first.

pa sam im samo prvi pokazivao to zlobno lice.

If I wanted change, the change had to start with me.

Ako sam želeo promenu, ona je morala da počne od mene.

So I came up with a plan.

Zato sam smislio plan.

Two-parter, not that deep.

Plan iz dva dela, ne tako komplikovan.

Number one: I would just let people stare,

Prvi deo: pustio bih ljude da bulje -

drink it in, stare all you want,

nagledajte se, buljite koliko hoćete -

and not react.

i ne bih reagovao.

Because the truth is when I got this disease,

Zato što, kada sam dobio ovu bolest,

I was all up in the mirror staring at every new spot

bio sam stalno pred ogledalom, buljeći u svaku novu tačku,

trying to figure out what is going on.

pokušavajući da shvatim šta se dešava.

So I needed to let other people have that same opportunity

Zbog toga sam morao da dopustim drugim ljudima istu mogućnost

to get that visual understanding.

da bi vizuelno razumeli.

Number two:

Broj dva:

I would react with positivity,

reagovao bih pozitivno,

and that was simply a smile,

a to bi bio mali osmeh,

or, at the very least,

ili makar

a nonjudgmental, kind face.

neosuđujuće, ljubazno lice.

Simple plan.

Jednostavan plan.

But it turned out to be more difficult than I thought.

Ali ispostavilo se da je to mnogo teže nego što sam mislio.

But over time,

Vremenom,

things started to go OK.

stvari su počele da se kreću nabolje.

Like this one time, I'm at the store and this dude is like staring at me,

Jednom, na primer, ja u prodavnici i lik bulji u mene,

like burning a hole in the side of my head.

kao da će me progoreti pogledom.

Ja kupujem, on bulji u mene,

I'm shopping, he's staring at me,

I'm going to the checkout, he's staring at me,

ja idem do kase, on bulji u mene,

ja plaćam, on je na drugoj kasi i bulji u mene,

I'm checking out, he's on the other line checking out, he's staring at me,

idemo do izlaza, on i dalje bulji u mene,

we go to the exit, he's still staring at me,

so I see he's staring

dakle, ja znam da on bulji,

and finally I turn to him and I go, "Hey buddy, what's up!"

i na kraju se okrećem prema njemu i kažem: „Hej druže, šta ima?”

And he goes ...

I on odgovara:

(Mumbles nervously) "Hi!"

(Nervozno mrmljanje) „Zdravo!”

(Laughter)

(Smeh)

Awkward.

Čudno.

So to relieve the tension, I say,

Da bih spustio tenzije, kažem:

"It's just a skin disorder.

„To je samo kožni poremećaj.

It's not contagious, it's not life-threatening,

Nije zarazno, niti smrtonosno,

it just makes me look a little different."

samo izgledam malo drugačije.”

I end up talking to that guy for like five minutes.

Na kraju sam jedno pet minuta pričao sa tim likom.

It was kind of cool, right?

To je bilo baš kul iskustvo, zar ne?

And at the end of our conversation, he says,

Na kraju razgovora je rekao:

"You know, if you didn't have 'vitilargo'" --

„Znaš, da nemaš vitilargo“ -

it's actually vitiligo, but he was trying, so --

u stvari je vitiligo, ali trudio se, pa -

(Laughter)

(Smeh)

"if you didn't have vitilargo, you'd look just like that guy on TV."

„da nemaš vitilargo, izgledao bi isto kao onaj lik sa TV-a.”

(Laughter)

(Smeh)

And I was like, "Haha, yeah, I get that, I get that, yeah."

A ja sam bio u fazonu: „Haha, da, da, ljudi mi to često kažu.”

(Laughter)

(Smeh)

So things were going OK.

Dakle, stvari su se kretale ka boljem.

I was having more good exchanges than bad,

Imao sam više dobrih nego loših iskustava,

until that day.

sve do tog dana.

I had a little time before work

Imao sam malo vremena pre posla,

so I like to stop by the park to watch the kids play.

pa volim da zastanem u parku i gledam decu kako se igraju.

They're funny.

Smešna su.

So I got a little too close, this little girl wasn't paying attention,

Malo sam preblizu stao, devojčica nije obraćala pažnju,

imala je oko dve ili tri godine,

she's about two or three years old,

trčala je, naletela direktno u moje noge i pala prilično snažno.

she's running, she runs directly into my leg and falls down, pretty hard.

Pomislio sam da se povredila,

I thought she hurt herself,

pa sam pružio ruke pokušavajući da joj pomognem.

so I reach out to try and help the little girl

and she looks at my vitiligo

Ona je pogledala u moj vitiligo

and she screams!

i počela da vrišti!

Now kids are pure honesty.

Deca su čista iskrenost.

She's like two or three.

Devojčica ima oko dve ili tri godine.

This little girl, she wasn't trying to be mean.

Ona nije htela da bude zla.

She didn't have any malice in her heart.

Nije imala ni trunku zlobe u srcu.

This little girl was afraid.

Ta mala devojčica se uplašila.

She was just afraid.

Samo se bojala.

I didn't know what to do.

Nisam znao šta da radim.

I just took a step back and put my hands by my side.

Odmaknuo sam se i stavio ruke uz sebe.

I stayed in the house for two weeks and three days on that one.

Zatvorio sam se u kuću dve nedelje i tri dana nakon toga.

It took me a second to get my mind around the fact

Trebalo mi je vremena da shvatim činjenicu

that I scare small children.

da ja plašim decu.

And that was something that I could not smile away.

A to je nešto što nisam mogao da oteram osmehom.

But I jumped back on my plan

Vratio sam se svome planu,

and just put on my blinders,

navukavši naočnjake,

started going back out.

i počeo ponovo da izlazim.

Two months later, I'm in a grocery store reaching on the bottom shelf,

Dva meseca kasnije, u samoposluzi, tražeći nešto na donjoj polici,

and I hear a little voice go, "You've got a boo-boo?"

čujem glasić: „Ti si se povredio?”

It's like a two-year-old, three-year-old, same age, little girl,

Devojčica istih godina, od dve ili tri godine,

but she's not crying,

ali ona ne plače.

so I kneel down in front of her

Kleknuo sam ispred nje

and I don't speak two-year-old so I look up at the mom,

i pošto ne znam šta je rekla, pogledam u mamu,

i pitam: „Šta je rekla?"

and I say, "What did she say?"

And she says, "She thinks you have a boo-boo."

Ona odgovara: „Ona misli da ste se povredili.”

So I go, "No, I don't have a boo-boo, no, not at all."

Nastavljam: „Ne, nisam se povredio, uopšte.”

And the little girl says,

Zatim devojčica kaže:

"Duh-duh-hoy?"

„Dai-taj-boji?”

And so I look to mom for the translation,

Ponovo gledam u mamu za prevod,

and she says,

i ona odgovara:

"She thinks you're hurt."

„Ona misli da vas boli.”

And I say, "No, sweetie, I'm not hurt at all, I'm fine."

Kažem: „Ne dušo, uopšte ne boli, dobro sam.”

And the little girl reaches out with that little hand

Devojčica pruža svoju malu ruku

and touches my face.

i dodiruje mi lice.

She's trying to rub the chocolate into the vanilla

Pokušava da pomeša čokoladu i vanilu

or whatever she was doing.

ili šta god da je htela da uradi.

It was amazing!

To je bilo čudesno!

It was awesome.

To je bilo fenomenalno.

Because she thought she knew what it was,

Zbog toga što je ona mislila da zna šta je u pitanju,

she was giving me everything I wanted:

pružila mi je sve što sam želeo:

kindness, compassion.

dobrotu, saosećanje.

And with the touch of that little hand,

Dodirom te male ruke,

she healed a grown man's pain.

izlečila je bol odraslog čoveka.

Yee-ha.

Jupiiii.

Healed.

Izlečila.

I smiled for a long time on that one.

Dugo sam se osmehivao nakon toga.

Positivity is something worth fighting for,

Pozitivnost je nešto za šta se vredi boriti,

and the fight is not with others --

a borba nije sa drugima -

it's internal.

već unutrašnja borba.

If you want to make positive changes in your life,

Ako želite da napravite pozitivne promene u svom životu,

you have to consistently be positive.

morate stalno da budete pozitivni.

My blood type is actually B positive.

Moja krvna grupa je u stvari B pozitivna.

(Laughter)

(Smeh)

I know, corny TV guy dad joke,

Znam, znam, otrcani ćale-fazon lika sa TV-a,

my daughter hates it, but I don't care!

moja ćerka ga mrzi, ali ne marim!

Be positive!

Budite pozitivni!

(Laughs)

(Smeh)

A 14-year-old boy years ago --

Četrnaestogodišnji dečak, pre nekoliko godina -

this kid had vitiligo --

imao je vitiligo -

he asked me to show my face on television.

tražio je od mene da pokažem lice na televiziji.

I wasn't going to do it,

Nisam želeo to da uradim,

we've been over this, I thought I was going to lose my job,

već sam pričao, mislio sam da ću izgubiti posao,

but the kid convinced me by saying,

ali dečak me je ubedio rečima:

"If you show people what you look like and explain this to them,

„Ako pokažeš ljudima kako izgledaš i objasniš im to,

maybe they will treat me differently."

možda će mene tretirati drugačije.“

Boom! Blinders off.

Bum! Naočnjaci dole.

I did a TV report,

Uradio sam TV reportažu,

got an overwhelming response.

dobio odlične reakcije.

So I didn't know what to do.

Nisam znao šta da radim.

I took the attention and focused it back on the kid

Prihvatio sam tu pažnju i prebacio fokus na tog klinca

and other people that have vitiligo.

i druge ljude koji imaju vitiligo.

I started a support group.

Osnovao sam grupu za podršku.

Pretty soon, we noticed "VITFriends"

Uskoro smo širom zemlje primetili

and "V-Strong" support groups all over the country.

grupe za podršku „VITPrijatelji“ i „V-Jaki“.

In 2016, we all came together and celebrated World Vitiligo Day.

Godine 2016. skupili smo se i zajedno proslavili Svetski dan vitiliga.

This past June 25,

Prošlog 25. juna

we had over 300 people,

bilo nas je preko 300

all in celebration of our annual event.

na proslavi našeg godišnjeg događaja.

It was amazing.

Bilo je fenomenalno.

(Applause)

(Aplauz)

Thanks.

Hvala.

Now, I'm not going to lie to you

Neću vas lagati

and say it was quick or easy

i reći kako je za mene bilo brzo i glatko

for me to find a positive place living with this disease,

da pronađem pozitivnost živeći sa ovom bolesti,

but I found it.

ali našao sam je.

But I also got much more.

Uz to sam dobio još mnogo više.

I became a better man,

Postao sam bolji čovek,

the man I always wanted to be,

čovek koji sam uvek želeo da budem,

the kind of guy who can stand up in front of a room full of strangers

tip čoveka koji može da ustane u prostoriji punoj nepoznatih ljudi

and tell some of the toughest stories in his life

i ispriča im neke od najtežih priča iz svog života,

and end it all with a smile,

da sve to kruniše osmehom,

and find happiness in the fact that you all just smiled back.

i da pronađe sreću u činjenici da ste svi vi uzvratili osmehom.

Thank you.

Hvala vam.

(Applause)

(Aplauz)