How I help people understand vitiligo | Lee Thomas

譯者: Lilian Chiu 審譯者: Sharon Hsiao

When I was young,

我年輕時，

I wanted to be on TV:

我想要上電視：

the lights, the cameras,

那些燈光、攝影機、

the makeup,

化妝、

the glamorous life.

光鮮亮麗的人生。

And from my vantage point,

從我的觀察點來看，

just outside of a military base in Lawton, Oklahoma,

就在奧克拉荷馬州勞頓市的 一個軍事基地外面，

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

我無法區別出電視記者和演員。

It was all the same to me.

對我來說都一樣。

It was either,

反正，若不是「從柏林實況報導」

"Reporting live from Berlin"

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

或「當她來時，我應該帶著這種 精神在這裡照顧她、追求她。」

(Laughter)

（笑聲）

It was all special,

那種生活很特別，

it was all the spotlight,

那種聚光燈，

and I just knew that it was for me.

我知道那會是我的歸屬。

But somewhere along my journey,

但在我的旅程中，

life happened.

現實人生發生了。

Ah, much better.

啊，感覺好多了。

(Applause)

（掌聲）

I have a disease called vitiligo.

我得了白斑病。

It started early in my career.

在我職涯早期就開始了。

It's an autoimmune disorder.

它是自體免疫性疾病。

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

你的皮膚會看起來有白色的斑塊，

but it's actually void of color.

但那其實是缺乏顏色。

It affects all ethnicities,

各種種族都可能染病，

it affects all ages,

各種年齡都可能染病。

all genders,

各種性別，

it's not contagious,

它不會傳染，

it's not life-threatening,

沒有生命危險，

but it is mental warfare.

但卻是種心理的交戰。

It's tough.

很辛苦。

Now, I was diagnosed with this disease

我被診斷出這種疾病時，

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

我正在紐約市做《見證新聞》。

I was in the biggest city in the country,

我在美國最大的城市中，

I was on their flagship station

我在他們的頂尖電台，

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

我出現在他們排行榜上 有名的五點新聞中。

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

醫生看著我的雙眼，說：

"You have a disease called vitiligo.

「你得了白斑病。

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

它是一種皮膚疾病， 你會失去你的色素。

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

沒有解藥，但就這樣那樣。」

Charlie Brown's teacher.

查理布朗的老師 （聲音很糊）。（笑聲）

(Laughter)

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

他說沒有解藥。我聽到的 就只有「我的職涯完了。」

But I just couldn't give up.

但我就是無法放棄。

I couldn't quit,

我不能認輸，

because we put too much into this.

因為我們投入太多了。

And by "we" I mean Mr. Moss,

我說的「我們」是指摩斯先生，

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

他沒有讓我留校察看， 而是送我去演說和戲劇社，

or my sister who paid part of my college expenses,

或者我姐姐，幫我支付了 一部分的大學費用，

or my mom,

或者我母親，

who simply gave me everything.

她給了我一切。

I would not quit.

我不會認輸。

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

所以我決定就靠著 化妝繼續走下去。

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

反正我本來就要化妝， 這是電視，是吧？

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

我只要多化一點妝， 一切就沒問題了。

And that actually went very well for years.

其實我就這樣 順利地繼續了很多年。

I went from being a reporter in New York City

我本來是紐約市的記者，

to being a morning show anchor in Detroit,

後來到了汽車城市底特律

the Motor City.

當早晨節目的主播。

And as the disease got worse,

隨著疾病惡化，

I just put on more makeup.

我就化更多的妝。

It was easy.

很容易。

Except for my hands.

除了我的手。

See, this disease is progressive and ever-changing.

這種疾病會越來越 嚴重且不斷改變。

That means it comes and goes.

意思就是它來來去去。

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

在某個時點， 大約有一年半的時間，

my face was completely white.

我的臉是全白的。

Yeah, it trips me out too.

是的，我也覺得很詭異。（笑聲）

(Laughter)

Yeah.

是啊。

And then, with a little help,

接著，在一些協助之下，

some of the pigment came back,

有些色素回來了，

but living through this process

但度過這個過程，

was like two sides of a coin.

就像是硬幣的兩面。

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

當我在工作，當我有化妝時，

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

或化妝外出時， 我就是電視上的那個人。

"Hey, how you doing everybody? Great."

「嘿，大家好嗎？好極了。」

At home without the makeup,

在家中則沒有化妝，

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

我會把妝卸掉，就好像 我是痲瘋病患者一樣。

The stares, constantly staring at me,

目光，大家總是盯著我，

the comments under their breath.

他們呼吸底下的評論。

Some people refused to shake my hand.

有些人拒絕握我的手。

Some people moved to the other side of the sidewalk,

有些人移動到人行道的另一邊，

moved to the other side of the elevator.

移動到電梯的另一邊。

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

我覺得他們就像是 移動到人生的另一邊。

It was tough,

很辛苦，

and those were some tough years.

那些年真的很艱苦。

And honestly,

老實說，

sometimes I just had to shelter in place.

有時，我就是得要躲在避風港裡。

You know what I mean?

你們懂嗎？類似只是待在家中，

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

直到我整理好心情。

But then I'd put my blinders back on,

但接著，我又戴回我的眼罩，

I'd get back out there,

我回到外頭去，

do my thing,

做我的事，

but in the process of doing that,

但在那個過程中，

I developed this --

我發展出了這種——

angry, grumpy demeanor.

憤怒、暴躁的態度。

Anger is an easy go-to,

要陷入憤怒很容易，

and people would leave me alone,

大家就不會來煩我，

but it just wasn't me.

但那就不是我。

It wasn't me.

那不是我。

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

我允許這個疾病將我變成了這個

憤怒、暴躁、有斑點的傢伙。

It just wasn't me.

那就不是我。

So I had to change.

所以我得要改變。

I knew I could not change other people.

我知道我無法改變其他人。

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

我無法控制大家的行為跟反應。

But there was a cold hard reality as well.

但還有個殘酷的現實。

I was the one

是我在

that was showing anger, sadness

表現憤怒、悲傷，

and isolating myself.

並孤立我自己。

It was actually a choice.

那其實是我的選擇。

I was walking out the door every day

每天，我走出門，

expecting the world to react with negativity,

預期這個世界會 對我有負面的反應，

so I just gave them that mean face first.

所以我就先擺出一張臭臉。

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

如果我想要改變， 得要從我自己改變起。

So I came up with a plan.

所以我想出了一個計畫。

Two-parter, not that deep.

計畫不深奧，只有兩部分。

Number one: I would just let people stare,

第一：我就讓大家盯著我看，

drink it in, stare all you want,

接受它，想盯著看就盯著看吧，

and not react.

我不會有反應。

Because the truth is when I got this disease,

因為，事實是， 當我得到這種病時，

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

我會一直在鏡子前面， 盯著每一塊新斑點，

trying to figure out what is going on.

試著想通到底是怎麼搞的。

So I needed to let other people have that same opportunity

所以我也得讓其他人 有同樣的機會，

to get that visual understanding.

從視覺上來了解我。

Number two:

第二：

I would react with positivity,

我要做正面的回應，

and that was simply a smile,

可以很簡單地微笑一下，

or, at the very least,

或者，最少最少，

a nonjudgmental, kind face.

也要擺出無偏見、仁慈的臉。

Simple plan.

很簡單的計畫。

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

但後來發現沒有我想像中的容易。

But over time,

但，隨著時間，

things started to go OK.

一切好轉了。

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

比如有一次，我在一家店裡， 有個傢伙盯著我看，

like burning a hole in the side of my head.

就像在我的臉上燒出一個洞。

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

我買東西時，他盯著我， 我去結帳時，他盯著我，

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

我在結帳，他在另一排 結帳隊伍中，盯著我，

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

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

我們要去出口了，他仍然盯著我，

so I see he's staring

我看見他盯著我，

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

終於，我轉向他，我說： 「嘿，老兄，你好嗎？」

And he goes ...

他說……（含糊地說話）「嗨！」

(Mumbles nervously) "Hi!"

(Laughter)

（笑聲）

Awkward.

很尷尬。

So to relieve the tension, I say,

為了讓氣氛輕鬆點，我說：

"It's just a skin disorder.

「那只是一種皮膚疾病。

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

不會感染，沒有生命危險， 只會讓我看起來不一樣。」

it just makes me look a little different."

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

最後我和那個人在雜貨店裡 聊了大概五分鐘。

It was kind of cool, right?

蠻酷的，對吧？

And at the end of our conversation, he says,

在我們交談結束時，他說：

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

「若你沒有『白斑病 （發音錯誤）』」——

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

其實讀音是白斑病， 但他努力在試了，所以——

(Laughter)

（笑聲）

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

「若你沒有白斑病，你看起來 會很像電視上的那個人。」

(Laughter)

（笑聲）

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

我說：「哈哈， 是啊，我懂，我懂。」

(Laughter)

（笑聲）

So things were going OK.

所以，一切好轉了。

I was having more good exchanges than bad,

我的交流經驗好的比壞的多，

until that day.

直到那一天。

I had a little time before work

上班前我有點時間， 所以我想去一下公園，

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

去看孩子玩耍。他們很有趣。

They're funny.

所以我靠得有點太近，

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

有個約兩、三歲的女孩沒有注意，

she's about two or three years old,

她正在跑步，跑過來直接 撞到我的腿，重重摔倒。

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

I thought she hurt herself,

我以為她受傷了，

所以我伸出手，想幫這個小女孩，

so I reach out to try and help the little girl

and she looks at my vitiligo

她看著我的白斑病，

and she screams!

她尖叫了！

Now kids are pure honesty.

孩子非常直白。

She's like two or three.

她才兩、三歲。

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

這個小女孩，她並沒有惡意。

She didn't have any malice in her heart.

她心中沒有任何敵意。

This little girl was afraid.

這個小女孩是在害怕。

She was just afraid.

她只是害怕。

I didn't know what to do.

我不知道該怎麼辦。

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

只是後退一步，把手放在身邊。

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

因為那件事，我在房子裡 待了兩週又三天。

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

我很容易就會想到 這個殘酷的事實：

that I scare small children.

我會嚇到小孩子。

And that was something that I could not smile away.

對這種事，我無法一笑置之。

But I jumped back on my plan

但我又回到我的計畫，

and just put on my blinders,

戴上了我的眼罩，

started going back out.

再次開始出門。

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

兩個月後，我在一間雜貨店裡， 把手伸向貨架的底層，

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

我聽到一個小聲音說： 「你有傷傷？」

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

同樣是個大約兩、三歲的小女孩，

but she's not crying,

但她並沒有哭，

so I kneel down in front of her

我在她面前跪下來，

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

我不會說兩歲語言， 所以我看向她媽媽，

and I say, "What did she say?"

我說：「她說什麼？」 她說：「她認為你有傷傷。」

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

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

我說：「不，我沒有 傷傷，完全沒有。」

And the little girl says,

小女孩說：「的的胡依？」

"Duh-duh-hoy?"

And so I look to mom for the translation,

我看向媽媽，請她翻譯，

and she says,

她說：「她認為你受傷了。」

"She thinks you're hurt."

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

我說：「不，親愛的， 我沒有受傷，我很好。」

And the little girl reaches out with that little hand

小女孩伸出她的小手，

and touches my face.

觸碰我的臉。

She's trying to rub the chocolate into the vanilla

她想要把巧克力挫成香草，

or whatever she was doing.

或者有其他目的。簡直不可思議！

It was amazing!

It was awesome.

感覺很棒。

Because she thought she knew what it was,

因為她以為她知道那是什麼，

she was giving me everything I wanted:

她給了我所想要的一切：

kindness, compassion.

仁慈、同情。

And with the touch of that little hand,

靠那小手的觸碰，

she healed a grown man's pain.

她療癒了一名成人的痛苦。

Yee-ha.

依～哈。

Healed.

治癒了。

I smiled for a long time on that one.

那件事讓我微笑了好久。

Positivity is something worth fighting for,

為正能量而戰是值得的，

and the fight is not with others --

戰鬥的對手不是他人——

it's internal.

是內在。

If you want to make positive changes in your life,

如果你想要在你的人生中 做出正面的改變，

you have to consistently be positive.

你就得要經常保持正面。

My blood type is actually B positive.

我的血型是 B 型陽性 （發音同：「要正面）」。

(Laughter)

（笑聲）

I know, corny TV guy dad joke,

我知道，老掉牙的電視人冷笑話，

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

我女兒很討厭它，但我不在乎！

Be positive!

要正面！

(Laughs)

（笑）

A 14-year-old boy years ago --

幾年前，一個十四歲的男孩——

this kid had vitiligo --

這個孩子有白斑病——

he asked me to show my face on television.

他請我在電視上展示我的臉。

I wasn't going to do it,

我不打算那麼做。

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

我已經走過這條路了， 我以為我會丟了工作，

but the kid convinced me by saying,

但這個孩子說服了我，他說：

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

「如果你讓大家看到這種病 是什麼樣子，並向他們解釋，

maybe they will treat me differently."

也許他們對我的方式就會不同。」

Boom! Blinders off.

砰！拿掉眼罩。

I did a TV report,

我做了一則電視報導，

got an overwhelming response.

得到了驚人的反應。

So I didn't know what to do.

我不知道該怎麼辦。

I took the attention and focused it back on the kid

我把注意力和焦點 放回那個孩子身上，

and other people that have vitiligo.

以及其他白斑病患者身上。

I started a support group.

我成立了一個支持團體。

Pretty soon, we noticed "VITFriends"

很快，我們注意到全國各地 出現了如「白斑朋友」

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

和「白色堅強」等支持團體。

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

2016 年，我們齊聚一堂， 慶祝世界白班病日。

This past June 25,

剛過去的六月二十五日，

we had over 300 people,

我們有超過三百人，

all in celebration of our annual event.

都在慶祝我們的年度盛事。

It was amazing.

很不可思議。

(Applause)

（掌聲）

Thanks.

謝謝。

Now, I'm not going to lie to you

我不會騙各位說

and say it was quick or easy

我很快或很容易，

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

就找到一個正面的方法 和這種疾病共存，

but I found it.

但我找到了。

But I also got much more.

但我得到的不只如此。

I became a better man,

我變成了更好的人，

the man I always wanted to be,

我一直想要成為的人，

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

這個人能夠站在 一群陌生的觀眾面前，

and tell some of the toughest stories in his life

訴說他人生中最辛苦的一些故事，

and end it all with a smile,

最後以一個微笑作結，

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

並從各位回覆給他的 微笑中找到快樂。

Thank you.

謝謝。

(Applause)

（掌聲）