How I help people understand vitiligo | Lee Thomas

Translator: Hana Julia Reviewer: Yolanda Raintina

When I was young,

Ketika saya masih muda,

I wanted to be on TV:

saya ingin tampil di TV:

the lights, the cameras,

lampu, kamera,

the makeup,

riasan wajah,

the glamorous life.

kehidupan glamor.

And from my vantage point,

Dan dari pandangan saya,

just outside of a military base in Lawton, Oklahoma,

di luar pangkalan militer di Lawton, Oklahoma,

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

saya tidak melihat perbedaan antara reporter TV dan aktor.

It was all the same to me.

Bagi saya kedua profesi itu sama.

It was either,

Seperti ini,

"Reporting live from Berlin"

"Siaran langsung dari Berlin"

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

atau "Saya menemaninya dan membujuknya dengan semangat ketika dia datang. "

(Laughter)

(Tawa)

It was all special,

Semuanya istimewa,

it was all the spotlight,

semuanya menjadi sorotan,

and I just knew that it was for me.

dan saya tahu itu untuk saya.

But somewhere along my journey,

Tetapi di tengah perjalanan,

life happened.

terjadilah sesuatu.

Ah, much better.

Ah, semakin baik.

(Tepuk tangan)

(Applause)

I have a disease called vitiligo.

Saya mengidap penyakit vitiligo.

It started early in my career.

Penyakit ini ada di awal karier saya.

It's an autoimmune disorder.

Vitiligo adalah gangguan autoimun.

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

Seperti kulit Anda terlihat memiliki bercak putih,

but it's actually void of color.

tapi sebetulnya tidak begitu.

It affects all ethnicities,

Penyakit ini menyerang semua etnis,

it affects all ages,

menyerang semua umur,

all genders,

semua jenis kelamin,

it's not contagious,

penyakit ini tidak menular,

it's not life-threatening,

tidak mengancam hidup,

but it is mental warfare.

tapi memengaruhi mental.

It's tough.

Ini sulit.

Now, I was diagnosed with this disease

Kini, saya didiagnosis penyakit ini

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

saat saya sedang mengerjakan "Eyewitness News" di New York.

I was in the biggest city in the country,

Saya berada di kota terbesar di negara ini,

I was on their flagship station

saya berada di stasiun andalan mereka

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

dan saya berada di siaran berita pukul 5 sore peringkat tearatas.

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

Dokter menatap saya dan berkata,

"You have a disease called vitiligo.

"Anda terkena penyakit vitiligo.

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

Ini adalah kelainan kulit ketika Anda kehilangan pigmen.

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

Charlie Brown's teacher.

Guru Charlie Brown.

(Laughter)

(Tawa)

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

Dia mengatakan tidak ada obatnya. Tapi saya dengar, "Karier saya berakhir."

But I just couldn't give up.

Tapi saya tidak boleh menyerah.

I couldn't quit,

Saya tidak bisa berhenti,

because we put too much into this.

karena kebanyakan dari kita melakukan ini.

And by "we" I mean Mr. Moss,

Kata "kita" yang saya maksud adalah Tuan Moss,

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

yang mengirim saya ke klub pidato dan drama bukannya tahanan,

or my sister who paid part of my college expenses,

atau saudara perempuan saya yang membayar sebagian biaya kuliah saya,

or my mom,

atau ibu saya,

who simply gave me everything.

yang memberi saya segalanya.

I would not quit.

Saya tidak akan menyerah.

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

Jadi saya memutuskan untuk merias wajah dan terus bergerak.

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

Saya harus memakai riasan. Ini TV, sayang, 'kan?

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

Saya sedikit memakai riasan, dan semuanya keren.

And that actually went very well for years.

Dan itu berjalan sangat baik selama bertahun-tahun.

I went from being a reporter in New York City

Saya berubah dari seorang reporter di Kota New York

to being a morning show anchor in Detroit,

menjadi pembawa acara pagi di Detroit,

the Motor City.

Kota Motor.

And as the disease got worse,

Saat penyakitnya semakin parah,

I just put on more makeup.

saya hanya menebalkan riasannya.

It was easy.

Itu mudah.

Except for my hands.

Kecuali tangan saya.

See, this disease is progressive and ever-changing.

Penyakit ini progresif dan selalu berubah.

That means it comes and goes.

Yang berarti ia datang dan pergi.

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

Pada satu titik, sekitar satu setengah tahun,

my face was completely white.

wajah saya menjadi putih.

Yeah, it trips me out too.

Itu membuat saya kesal.

(Laughter)

(Tawa)

Yeah.

Iya.

And then, with a little help,

Kemudian, dengan sedikit bantuan,

some of the pigment came back,

but living through this process

tetapi melalui proses hidup ini

was like two sides of a coin.

ibarat dua sisi mata uang.

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

Ketika saya bekerja saya memakai riasan

atau pun saat berada di luar, saya orang TV.

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

"Hey, how you doing everybody? Great."

"Hei, bagaimana kabar Anda? Hebat."

At home without the makeup,

Di rumah tanpa riasan,

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

Saya akan melepasnya dan seperti penderita kusta.

The stares, constantly staring at me,

Tatapannya terus pada saya,

the comments under their breath.

komentar pelan mereka.

Some people refused to shake my hand.

Beberapa orang menolak bersalaman dengan saya.

Some people moved to the other side of the sidewalk,

moved to the other side of the elevator.

pindah ke sisi lain lift.

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

It was tough,

and those were some tough years.

dan itulah tahun-tahun yang sulit.

And honestly,

Sejujurnya,

sometimes I just had to shelter in place.

terkadang saya harus bersembunyi di suatu tempat.

You know what I mean?

Apa Anda tahu maksud saya?

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

Berdiam di rumah sampai pikiran saya menjadi jernih.

But then I'd put my blinders back on,

Kemudian saya memakai penutup mata,

I'd get back out there,

saya akan kembali ke sana,

do my thing,

melakukan aktivitas,

but in the process of doing that,

tetapi melalui proses itu,

I developed this --

saya mengembangkan --

angry, grumpy demeanor.

marah, sikap pemarah.

Anger is an easy go-to,

Kemarahan itu mudah dilakukan,

and people would leave me alone,

dan orang-orang akan meninggalkan saya sendiri,

but it just wasn't me.

tapi itu bukan saya.

It wasn't me.

Bukan saya.

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

Saya membiarkan penyakit ini menjadikan saya pemarah, galak, dan berbintik.

It just wasn't me.

Itu bukanlah saya.

So I had to change.

I knew I could not change other people.

Saya tidak bisa mengubah orang lain.

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

Orang-orang akan bereaksi dan melakukan apa pun.

But there was a cold hard reality as well.

Tetapi ada juga kenyataan keras yang dingin.

I was the one

Saya adalah orang

that was showing anger, sadness

yang menunjukkan kemarahan, kesedihan

and isolating myself.

It was actually a choice.

I was walking out the door every day

Saya berjalan keluar rumah setiap hari

expecting the world to react with negativity,

menyangka dunia bereaksi negatif,

so I just gave them that mean face first.

jadi saya memberi mereka wajah kejam itu dahulu.

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

So I came up with a plan.

Two-parter, not that deep.

Dua bagian, tidak terlalu dalam.

Number one: I would just let people stare,

Nomor satu: saya hanya akan membiarkan orang menatap,

drink it in, stare all you want,

meminumnya, menatap sesuka Anda,

and not react.

Because the truth is when I got this disease,

Karena ketika saya mengidap penyakit ini,

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

saya bercermin menatap setiap area baru

trying to figure out what is going on.

mencoba mencari tahu apa yang sedang terjadi.

So I needed to let other people have that same opportunity

Jadi saya membiarkan orang lain memiliki kesempatan yang sama

to get that visual understanding.

untuk mendapatkan pemahaman visual itu.

Number two:

Nomor dua:

I would react with positivity,

Saya akan bereaksi secara positif,

and that was simply a smile,

dan itu hanyalah senyuman,

or, at the very least,

atau, paling tidak,

a nonjudgmental, kind face.

wajah ramah dan tidak menghakimi.

Simple plan.

Rencana yang sederhana.

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

Ternyata lebih sulit dari yang saya kira.

But over time,

things started to go OK.

segalanya mulai berjalan baik.

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

Seperti saat ini, saya di toko dan pria ini seperti menatap saya,

like burning a hole in the side of my head.

seperti membuat lubang di kepala saya.

Saat saya berbelanja, dia menatap,

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

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

Saat saya ke kasir, dia menatap,

saat saya memeriksa, dia menatap saya dari arah lain,

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

kami keluar, dia masih menatap saya,

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

jadi saya melihat dia sedang menatap

so I see he's staring

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

saya menoleh padanya dan berkata, "Hai teman, ada apa!"

And he goes ...

(Mumbles nervously) "Hi!"

(Laughter)

(Tawa)

Awkward.

Jadi untuk menghilangkan ketegangan, saya katakan,

So to relieve the tension, I say,

"It's just a skin disorder.

"Ini hanya gangguan kulit.

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

Ini tidak menular, tidak mengancam nyawa,

it just makes me look a little different."

hanya membuat saya terlihat berbeda. "

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

Akhirnya saya berbicara dengan pria itu selama 5 menit.

It was kind of cool, right?

Itu cukup keren, 'kan?

And at the end of our conversation, he says,

Pada akhir percakapan dia berkata,

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

"Anda tahu, jika Anda tidak memiliki 'vitilargo' "--

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

sebenarnya vitiligo, tapi dia berusaha, jadi -

(Laughter)

(Tawa)

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

"Jika Anda tidak vitilargo, Anda akan terlihat seperti orang itu di TV. "

(Laughter)

(Tawa)

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

Dan saya seperti, "Haha, ya, saya mengerti, saya mengerti, ya. "

(Laughter)

(Tawa)

So things were going OK.

Jadi semuanya baik-baik saja.

I was having more good exchanges than bad,

Saya lebih banyak mengalami hal yang baik daripada yang buruk,

until that day.

I had a little time before work

Sebelum saya pergi bekerja

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

saya mampir ke taman melihat anak-anak bermain.

They're funny.

Mereka lucu.

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

Jadi saya mendekat, gadis kecil ini tidak memperhatikan,

dia sekitar dua atau tiga tahun,

she's about two or three years old,

dia berlari, tersandung di kaki saya dan jatuh cukup keras.

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

Saya kira dia terluka,

I thought she hurt herself,

jadi saya membantu gadis kecil itu

so I reach out to try and help the little girl

and she looks at my vitiligo

and she screams!

Now kids are pure honesty.

Anak-anak memiliki kejujuran yang murni.

She's like two or three.

Dia berusia dua atau tiga tahun.

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

Gadis kecil ini tidak bersikap jahat.

She didn't have any malice in her heart.

Dia tidak memiliki niat jahat di hatinya.

This little girl was afraid.

Gadis kecil ini ketakutan.

She was just afraid.

I didn't know what to do.

Saya bingung berbuat apa.

Saya mundur dan meletakkan tangan di sisi saya.

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

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

Saya tinggal di rumah selama dua minggu dan tiga hari setelah kejadian itu.

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

Butuh beberapa saat bagi saya untuk menyadari

that I scare small children.

bahwa saya menakuti anak kecil.

And that was something that I could not smile away.

Dan itu membuat saya tidak bisa tersenyum.

But I jumped back on my plan

Tapi saya kembali pada rencana saya

and just put on my blinders,

dan memakai penutup mata saya,

started going back out.

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

Dua bulan kemudian, saya di toko kelontong dan meraih rak bawah,

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

dan saya mendengar suara kecil, "Kamu punya boo-boo?"

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

Dia sekitar dua atau tiga tahun, usia yang sama, gadis kecil,

but she's not crying,

tapi dia tidak menangis,

so I kneel down in front of her

jadi saya berlutut di depannya

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

saya tak mengerti, melihat ibunya, dan bertanya, "Apa maksudnya?"

and I say, "What did she say?"

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

Ibu itu berkata, "Dia berpikir kamu punya boo-boo."

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

Jadi saya berkata, "Tidak, saya tidak punya boo-boo."

And the little girl says,

"Duh-duh-hoy?"

And so I look to mom for the translation,

Jadi saya menanyakan artinya pada ibunya,

and she says,

dan dia berkata,

"She thinks you're hurt."

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

Saya berkata,"Tidak, Sayang, saya tidak terluka, saya baik-baik saja. "

And the little girl reaches out with that little hand

Gadis kecil itu mengulurkan tangannya dan menyentuh wajah saya.

and touches my face.

She's trying to rub the chocolate into the vanilla

Dia berusaha menggosok coklat ke vanila

or whatever she was doing.

atau apapun yang dia lakukan.

It was amazing!

It was awesome.

Because she thought she knew what it was,

Karena dia pikir dia mengetahuinya,

she was giving me everything I wanted:

dia memberi semua yang saya inginkan:

kindness, compassion.

And with the touch of that little hand,

she healed a grown man's pain.

dia menyembuhkan rasa sakit orang dewasa.

Yee-ha.

Healed.

Sembuh.

I smiled for a long time on that one.

Saya tersenyum lama pada saat itu.

Positivity is something worth fighting for,

Sikap positif adalah hal yang layak diperjuangkan,

and the fight is not with others --

dan pertarungannya tidak dengan orang lain -

it's internal.

namun secara internal.

If you want to make positive changes in your life,

Jika Anda ingin membuat perubahan positif dalam hidup,

you have to consistently be positive.

Anda harus selalu bersikap positif.

My blood type is actually B positive.

Golongan darah saya sebenarnya B positif.

(Laughter)

(Tawa)

I know, corny TV guy dad joke,

Saya tahu, lelucon ayah TV yang klise,

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

putri saya tak suka, tapi saya tak peduli!

Be positive!

Jadilah positif!

(Laughs)

(Tawa)

A 14-year-old boy years ago --

Tahun lalu, ada seorang anak lelaki berusia 14 tahun--

this kid had vitiligo --

anak ini mengidap vitiligo -

he asked me to show my face on television.

dia meminta saya untuk menunjukkan wajah saya di televisi.

I wasn't going to do it,

Saya tidak akan melakukannya.

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

Saya pikir saya akan kehilangan pekerjaan.

but the kid convinced me by saying,

Tetapi anak itu mengatakan,

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

"Jika Anda tunjukkan penampilan Anda dan menjelaskannya,

maybe they will treat me differently."

mereka akan memperlakukan saya dengan berbeda. "

Boom! Blinders off.

Boom! Mata terbuka.

I did a TV report,

Saya membuat laporan TV,

got an overwhelming response.

So I didn't know what to do.

Saya tak tahu harus berbuat apa.

I took the attention and focused it back on the kid

Saya menarik perhatian dan memfokuskannya kepada anak

and other people that have vitiligo.

dan orang lain penderita vitiligo.

I started a support group.

Saya membuat kelompok pendukung.

Pretty soon, we noticed "VITFriends"

Kemudian, kami melihat "VITFriends"

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

dan kelompok pendukung "V-Strong" di seluruh negeri.

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

Pada tahun 2016, kami semua hadir dan merayakan Hari Vitiligo Dunia.

This past June 25,

Pada tanggal 25 Juni lalu,

we had over 300 people,

kami beranggotakan lebih dari 300 orang,

all in celebration of our annual event.

semuanya merayakan acara tahunan kami.

It was amazing.

Sangat menakjubkan.

(Applause)

(Tepuk tangan)

Thanks.

Terima kasih.

Now, I'm not going to lie to you

Sekarang, saya tidak akan berbohong pada Anda

and say it was quick or easy

dan saya katakan ini dengan cepat atau mudah

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

bagi saya temukan tempat hidup yang positif dengan penyakit ini,

but I found it.

dan saya menemukannya.

But I also got much more.

Tapi saya juga mendapat banyak hal.

I became a better man,

Saya menjadi orang yang lebih baik,

the man I always wanted to be,

orang yang selalu saya inginkan,

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

orang yang bisa berdiri di depan ruangan yang penuh dengan orang asing

and tell some of the toughest stories in his life

dan menceritakan beberapa kisah yang terberat dalam hidup

and end it all with a smile,

dan akhiri semuanya dengan senyuman,

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

dan temukan kebahagiaan hidup Anda dengan senyuman.

Thank you.

Terima kasih.

(Applause)

(Tepuk tangan)