How I help people understand vitiligo | Lee Thomas

翻译人员: psjmz mz 校对人员: Lipeng Chen

When I was young,

我年轻时，

I wanted to be on TV:

我想上电视：

the lights, the cameras,

灯光，镜头，

the makeup,

妆容，

the glamorous life.

耀眼的生活。

And from my vantage point,

从我的角度而言，

just outside of a military base in Lawton, Oklahoma,

住在俄克拉荷马州劳顿 的一个军事基地外，

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

我根本分不出电视记者和演员的区别。

It was all the same to me.

这对我都是一样的。

It was either,

要么是

"Reporting live from Berlin"

“柏林现场报道”，

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

或是“当她到来的时候，我要用 这种精神侍候她和追求她。”

(Laughter)

（笑声）

It was all special,

一切都很特别，

it was all the spotlight,

一切都在聚光灯下，

and I just knew that it was for me.

并且我就是知道它是为我而设的。

But somewhere along my journey,

但就在我生命的某个时间点，

life happened.

生活发生了改变。

Ah, much better.

啊，好些了。

(Applause)

（鼓掌）

I have a disease called vitiligo.

我有一种叫白癜风的病。

It started early in my career.

它在我职业早期就开始了。

It's an autoimmune disorder.

这是一种原发性的免疫疾病。

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

就是皮肤有些地方看起来有白斑，

but it's actually void of color.

但这些地方实际上是没有颜色的。

It affects all ethnicities,

它影响所有的人种，

it affects all ages,

它影响所有的年龄群体，

all genders,

所有的性别，

it's not contagious,

它不会传染，

it's not life-threatening,

不会造成生命威胁，

but it is mental warfare.

但它会带来精神战争。

It's tough.

这非常艰难。

Now, I was diagnosed with this disease

当我在纽约“目击者新闻”工作时，

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

我被诊断患有这个疾病。

I was in the biggest city in the country,

我在这个国家最大的城市，

I was on their flagship station

我在旗舰电视台工作，

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

我上了他们下午5点 收视率最高的新闻节目。

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

医生望着我的眼睛说，

"You have a disease called vitiligo.

“你患了一种叫白癜风的病，

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

这是一种失去色素的皮肤病。

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

无药可治，但......”

Charlie Brown's teacher.

他就这么喋喋不休。

(Laughter)

（笑声）

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

他说没药可治，我听到的全是， “我的职业生涯结束了。”

But I just couldn't give up.

但我就是不能放弃。

I couldn't quit,

我不能退出，

because we put too much into this.

因为我们投入了太多。

And by "we" I mean Mr. Moss,

“我们”的意思是莫斯先生，

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

他送我去演讲和戏剧俱乐部， 而没有把我送去拘留所，

or my sister who paid part of my college expenses,

或支付我部分大学花费的姐姐，

or my mom,

或是我母亲，

who simply gave me everything.

她给了我一切。

I would not quit.

我不能退出。

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

所以我决定化点妆，继续下去。

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

反正我也得化妆，毕竟 要上电视啊，对吧？

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

我只要多化点妆，就可以一切照旧了。

And that actually went very well for years.

前几年这方法确实很有效。

I went from being a reporter in New York City

我从一个纽约的记者

to being a morning show anchor in Detroit,

成为了底特律，这个汽车城

the Motor City.

的早间节目主持人。

And as the disease got worse,

随着病情加重，

I just put on more makeup.

我就化更多的妆。

It was easy.

这很容易。

Except for my hands.

除了我的手。

See, this disease is progressive and ever-changing.

这种疾病是不断发展和变化的。

That means it comes and goes.

这意味着它会出现和消失。

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

在某个时刻，在大约 1 年半的时间，

my face was completely white.

我的脸完全白了。

Yeah, it trips me out too.

是的，我完全凌乱了。

(Laughter)

（笑声）

Yeah.

是的。

And then, with a little help,

然后，凭借一点帮助，

some of the pigment came back,

一些色素回来了，

but living through this process

但生活在这个过程中

was like two sides of a coin.

就像硬币的两面。

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

当我工作时带上妆容，

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

或在外面带上面具时，我是电视人。

"Hey, how you doing everybody? Great."

“嘿，大家好吗？太好了。”

At home without the makeup,

在家没化妆时，

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

我就像麻风病人一样。

The stares, constantly staring at me,

那眼神，不停地盯着我，

the comments under their breath.

人们低声议论着。

Some people refused to shake my hand.

有些人拒绝和我握手。

Some people moved to the other side of the sidewalk,

有些人闪到路的一旁，

moved to the other side of the elevator.

移到电梯的另一角。

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

我感觉他们走到生命的另一边去了。

It was tough,

这很艰难，

and those were some tough years.

那是相当艰难的岁月。

And honestly,

并且坦白说，

sometimes I just had to shelter in place.

有时候，我只想找个地方躲起来。

You know what I mean?

你知道我的意思吗？

就这样呆在家里，直到想明白。

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

But then I'd put my blinders back on,

但然后我会带上我的眼罩，

I'd get back out there,

我会回到那里，

do my thing,

做我的事情，

but in the process of doing that,

但在做这些事情的过程中，

I developed this --

我养成了这个——

angry, grumpy demeanor.

愤怒、脾气暴躁的习惯。

Anger is an easy go-to,

愤怒是很容易的，

and people would leave me alone,

人们会让我一个人静静，

but it just wasn't me.

但这并不是我。

It wasn't me.

这不是我。

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

我任由这个疾病把我变成这个愤怒， 脾气暴躁，满身斑点的家伙。

It just wasn't me.

这并不是我。

So I had to change.

所以我得做出改变。

I knew I could not change other people.

我知道我不能改变别人。

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

人们有自己的反应，有他们想做的事。

But there was a cold hard reality as well.

但也有另一个残酷的现实。

I was the one

我是那个

that was showing anger, sadness

显露愤怒，悲伤

and isolating myself.

和自我隔离的人。

It was actually a choice.

这实际上是一种选择。

I was walking out the door every day

我每天走出门

expecting the world to react with negativity,

预期世界会做出负面的反应，

so I just gave them that mean face first.

所以我先给了他们一张刻薄的脸。

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

如果我想要改变， 这个改变应该从我开始。

So I came up with a plan.

于是我想出了一个计划。

Two-parter, not that deep.

两部分，并不复杂。

Number one: I would just let people stare,

第一：我会让人盯着看，

drink it in, stare all you want,

随他们去，随便看，

and not react.

不做反应。

Because the truth is when I got this disease,

因为实际上当我患病时，

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

我曾对着镜子盯着每一个地方，

trying to figure out what is going on.

试图搞清楚发生了什么。

So I needed to let other people have that same opportunity

所以我需要让别人也有同样的机会

to get that visual understanding.

去得到视觉上的理解。

Number two:

第二：

I would react with positivity,

我会积极回应，

and that was simply a smile,

用一个微笑，

or, at the very least,

或者，至少，

a nonjudgmental, kind face.

一张不带偏见的和善的脸。

Simple plan.

很简单的计划。

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

但结果比我想得困难。

But over time,

但时间久了，

things started to go OK.

事情开始变好。

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

像有一次，我在商店里， 有人盯着我看，

like burning a hole in the side of my head.

就像要在我脑袋旁烧出一个洞来。

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

我在购物，他盯着我看，

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

我去收银台，他盯着我看，

我结完账了，他在 另一边结账，还在盯着我看，

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

我们走到出口，他仍然盯着我，

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

so I see he's staring

我看到他在盯着我，

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

于是最终我转向他问： “嘿，伙计，怎么了！”

And he goes ...

他有些……

(Mumbles nervously) "Hi!"

（语无伦次）“嗨！”

(Laughter)

（笑声）

Awkward.

太尴尬了。

So to relieve the tension, I say,

所以为了缓解紧张，我说，

"It's just a skin disorder.

“这只是一种皮肤紊乱。

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

它不会传染，也不会死人，

it just makes me look a little different."

它只是让我看起来不同。”

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

我最后和这人聊了五分钟。

It was kind of cool, right?

有点酷，对吧？

And at the end of our conversation, he says,

在我们谈话的最后，他说，

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

“你知道吗，如果你没有麻风病”——

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

其实是白癜风，但他在努力，所以——

(Laughter)

（笑声）

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

“如果你没有白癜风， 你有点像电视里的那人。”

(Laughter)

（笑声）

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

我这样，“哈哈，是的， 我明白，我明白。”

(Laughter)

（笑声）

So things were going OK.

所以一切很顺利。

I was having more good exchanges than bad,

我有了更好而不是更糟的交流，

until that day.

直到那天。

I had a little time before work

在上班前的一段时间，

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

我喜欢在公园 停下来看孩子们玩耍。

They're funny.

他们很有趣。

有天我站得有些太近了， 有个小女孩没有注意到，

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

她大约 2 或 3 岁，

she's about two or three years old,

她在奔跑，她直跑向我的腿， 狠狠地摔倒了。

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

I thought she hurt herself,

我想她伤到自己了，

所以我伸出手去帮助这个小姑娘，

so I reach out to try and help the little girl

and she looks at my vitiligo

她看着我的白癜风，

and she screams!

尖叫起来！

Now kids are pure honesty.

孩子们都很诚实。

She's like two or three.

她大约 2 或 3 岁。

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

这个小女孩，她并非有意刻薄。

She didn't have any malice in her heart.

她心里没有任何恶意。

This little girl was afraid.

她只是害怕了。

She was just afraid.

她只是害怕而已。

I didn't know what to do.

我不知道该怎么做。

我只是退了一步，把手放在一边。

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.

因为这事，我在家里呆了 两个星期零三天。

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

我花了一秒就意识到，

that I scare small children.

我吓到小孩子了。

And that was something that I could not smile away.

这是我无法一笑而过的事情。

But I jumped back on my plan

但我回到了我的原计划，

and just put on my blinders,

戴上我的眼罩，

started going back out.

开始往回走。

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

两个月后，我在一家百货店 伸手去够最底层的货架，

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

我听到一个小声音说， “你有boo-boo？”

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

像是 2 岁，3 岁的，小女孩，

but she's not crying,

但她没有哭，

so I kneel down in front of her

所以我跪在她面前，

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

我不会说 2 岁孩子的话， 所以我看着她母亲，

and I say, "What did she say?"

我说，“她在说什么？”

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

她母亲说，“她觉得你有伤口。”

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

于是我说，“不， 我没有伤口，一点都没。”

And the little girl says,

这个小女孩说，

"Duh-duh-hoy?"

"Duh-duh-hoy?"

And so I look to mom for the translation,

于是我看着她母亲求翻译，

and she says,

她说，

"She thinks you're hurt."

“她认为你受伤了”。

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

我说，“没有，亲爱的， 我一点伤都没有，我很好。”

And the little girl reaches out with that little hand

这个小女孩伸出小手

and touches my face.

摸着我的脸。

She's trying to rub the chocolate into the vanilla

她像是在试着 把巧克力抹掉，露出香草，

or whatever she was doing.

也可能有其他的想法。

It was amazing!

这让我惊讶万分！

It was awesome.

这太棒了。

Because she thought she knew what it was,

因为她以为她知道那是什么，

she was giving me everything I wanted:

她给了我我想要的一切：

kindness, compassion.

善良，同情。

And with the touch of that little hand,

通过那只小手的触摸，

she healed a grown man's pain.

她治愈了一个成年人的痛苦。

Yee-ha.

耶哈！

Healed.

治愈了！

I smiled for a long time on that one.

我因此高兴了很长时间。

Positivity is something worth fighting for,

积极态度是我们值得抗争的东西，

and the fight is not with others --

这个抗争不是与别人——

it's internal.

这是内部的。

If you want to make positive changes in your life,

如果你想在生活中做出改变，

you have to consistently be positive.

你得持续保持积极。

My blood type is actually B positive.

我的血型是 B 阳性 （与保持积极谐音）。

(Laughter)

（笑声）

I know, corny TV guy dad joke,

我知道，这是老掉牙的电视冷笑话，

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

我女儿讨厌这种，但我不在乎！

Be positive!

要积极！

(Laughs)

（笑声）

A 14-year-old boy years ago --

几年前，一个 14 岁的小男孩——

this kid had vitiligo --

这个孩子有白癜风——

he asked me to show my face on television.

他让我在电视上露面。

I wasn't going to do it,

我并不打算这样，

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

我说过了，我认为这会让我失业，

but the kid convinced me by saying,

但这个孩子的话说服了我，

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

“如果你向人民展示 你长什么样并给他们解释，

maybe they will treat me differently."

也许他们对待我的态度也会不一样。”

Boom! Blinders off.

嘣！眼罩被除去了。

I did a TV report,

我做了个电视报道，

got an overwhelming response.

得到了极大的反响。

So I didn't know what to do.

我不知道该做什么。

I took the attention and focused it back on the kid

我把注意力和焦点放在这个孩子

and other people that have vitiligo.

和其他患有白癜风的人上。

I started a support group.

我成立了援助小组。

Pretty soon, we noticed "VITFriends"

很快，我们注意到了 全国各地的“白癜风之友”

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

和“白癜风-坚强”援助群组。

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

2016 年，我们聚集在一起 庆祝世界白癜风日。

This past June 25,

今年的 6 月 25 号，

we had over 300 people,

我们有超过 300 人

all in celebration of our annual event.

前来庆祝我们的年度盛会。

It was amazing.

真是让人惊奇。

(Applause)

（鼓掌）

Thanks.

谢谢。

Now, I'm not going to lie to you

我不想说谎，

and say it was quick or easy

说我很快或很容易

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

就找到了带着这种疾病 生活的积极位置，

but I found it.

但我找到了。

But I also got much more.

而且我也获得了更多。

I became a better man,

我成为了一个更好的人，

the man I always wanted to be,

这个我一直想成为的人，

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

这个人可以站在满屋子 的陌生人面前

and tell some of the toughest stories in his life

讲述一些生活中最艰难的故事，

and end it all with a smile,

并以微笑结束这一切，

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

还能从你们所有人的 微笑中找到快乐。

Thank you.

谢谢。

(Applause)

（鼓掌）