我如何让人们理解白癜风
日期:2019-11-17 13:00

(单词翻译:单击)

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When I was young, I wanted to be on TV: the lights, the cameras, the makeup, the glamorous life.
我年轻时,我想上电视:灯光,镜头,妆容,耀眼的生活。
And from my vantage point, just outside of a military base in Lawton, Oklahoma,
从我的角度而言,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, "Reporting live from Berlin" or "I shall attend her here and woo her with such spirit when she comes."
要么是“柏林现场报道”,或是“当她到来的时候,我要用这种精神侍候她和追求她。”
It was all special, it was all the spotlight, and I just knew that it was for me.
一切都很特别,一切都在聚光灯下,并且我就是知道它是为我而设的。
But somewhere along my journey, life happened. Ah, much better.
但就在我生命的某个时间点,生活发生了改变。啊,好些了。
I have a disease called vitiligo.
我有一种叫白癜风的病。
It started early in my career. It's an autoimmune disorder.
它在我职业早期就开始了。这是一种原发性的免疫疾病。
It's where it looks like your skin is getting white patches, but it's actually void of color.
就是皮肤有些地方看起来有白斑,但这些地方实际上是没有颜色的。
It affects all ethnicities, it affects all ages, all genders,
它影响所有的人种,它影响所有的年龄群体,所有的性别,
it's not contagious, it's not life-threatening, but it is mental warfare. It's tough.
它不会传染,不会造成生命威胁,但它会带来精神战争。这非常艰难。
Now, I was diagnosed with this disease when I was working on "Eyewitness News" in New York City.
当我在纽约“目击者新闻”工作时,我被诊断患有这个疾病。
I was in the biggest city in the country, I was on their flagship station and I was on their top-rated 5pm newscast.
我在这个国家最大的城市,我在旗舰电视台工作,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, "You have a disease called vitiligo.
医生望着我的眼睛说,“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". Charlie Brown's teacher.
无药可治,但...”他就这么喋喋不休。
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. I couldn't quit, because we put too much into this.
但我就是不能放弃。我不能退出,因为我们投入了太多。
And by "we" I mean Mr. Moss, who sent me to speech and drama club instead of to detention,
“我们”的意思是莫斯先生,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, or my mom, who simply gave me everything. I would not quit.
或支付我部分大学花费的姐姐,或是我母亲,她给了我一切。我不能退出。
So I decided to just put on makeup and keep it moving. I had to wear makeup anyway.
所以我决定化点妆,继续下去。反正我也得化妆。
It's TV, baby, right? I just put on a little more makeup, and everything's cool.
毕竟要上电视啊,对吧?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 to being a morning show anchor in Detroit, the Motor City.
我从一个纽约的记者成为了底特律这个汽车城的早间节目主持人。
And as the disease got worse, I just put on more makeup. It was easy. Except for my hands.
随着病情加重,我就化更多的妆。这很容易。除了我的手。
See, this disease is progressive and ever-changing. That means it comes and goes.
这种疾病是不断发展和变化的。这意味着它会出现和消失。
At one point, for about a year and a half, my face was completely white. Yeah, it trips me out too.
在某个时刻,在大约1年半的时间,我的脸完全白了。是的,我完全凌乱了。
Yeah. And then, with a little help, some of the pigment came back, but living through this process was like two sides of a coin.
是的。然后,凭借一点帮助,一些色素回来了,但生活在这个过程中就像硬币的两面。
When I'm at work and I'm wearing the makeup or wearing the makeup outside, I'm the TV guy.
当我工作时带上妆容,或在外面带上面具时,我是电视人。
"Hey, how you doing everybody? Great." At home without the makeup, I'd take it off and it was like being a leper.
“嘿,大家好吗?太好了。”在家没化妆时,我就像麻风病人一样。
The stares, constantly staring at me, the comments under their breath.
那眼神,不停地盯着我,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, moved to the other side of the elevator.
有些人闪到路的一旁,移到电梯的另一角。
I felt like they were moving to the other side of life. It was tough, and those were some tough years.
我感觉他们走到生命的另一边去了。这很艰难,那是相当艰难的岁月。
And honestly, sometimes I just had to shelter in place.
并且坦白说,有时候,我只想找个地方躲起来。
You know what I mean? Kind of just stay at home till I get my mind right.
你知道我的意思吗?就这样呆在家里,直到想明白。
But then I'd put my blinders back on, I'd get back out there, do my thing,
但然后我会带上我的眼罩,我会回到那里,做我的事情,
but in the process of doing that, I developed this -- angry, grumpy demeanor.
但在做这些事情的过程中,我养成了这个--愤怒、脾气暴躁的习惯。
Anger is an easy go-to, and people would leave me alone, but it just wasn't me. It wasn't me.
愤怒是很容易的,人们会让我一个人静静,但这并不是我。这不是我。
I was allowing this disease to turn me into this angry, grumpy, spotted guy. It just wasn't me.
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。这并不是我。
So I had to change. I knew I could not change other people.
所以我得做出改变。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 that was showing anger, sadness and isolating myself. It was actually a choice.
我是那个显露愤怒,悲伤和自我隔离的人。这实际上是一种选择。
I was walking out the door every day expecting the world to react with negativity, so I just gave them that mean face first.
我每天走出门预期世界会做出负面的反应,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. Two-parter, not that deep.
于是我想出了一个计划。两部分,并不复杂。
Number one: I would just let people stare, drink it in, stare all you want, and not react.
第一:我会让人盯着看,随他们去,随便看,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 trying to figure out what is going on.
我曾对着镜子盯着每一个地方,试图搞清楚发生了什么。
So I needed to let other people have that same opportunity to get that visual understanding.
所以我需要让别人也有同样的机会去得到视觉上的理解。
Number two: I would react with positivity, and that was simply a smile, or, at the very least, a nonjudgmental, kind face.
第二:我会积极回应,用一个微笑,或者,至少,一张不带偏见的和善的脸。
Simple plan. But it turned out to be more difficult than I thought. But over time, things started to go OK.
很简单的计划。但结果比我想得困难。但时间久了,事情开始变好。
Like this one time, I'm at the store and this dude is like staring at me, like burning a hole in the side of my head.
像有一次,我在商店里,有人盯着我看,就像要在我脑袋旁烧出一个洞来。
I'm shopping, he's staring at me, I'm going to the checkout, he's staring at me,
我在购物,他盯着我看,我去收银台,他盯着我看,
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,
我结完账了,他在另一边结账,还在盯着我看,我们走到出口,他仍然盯着我,我看到他在盯着我,
so I see he's staring and finally I turn to him and I go, "Hey buddy, what's up!" And he goes ... "Hi!" Awkward.
于是最终我转向他问:“嘿,伙计,怎么了!”他有些...“嗨!”太尴尬了。

我如何让人们理解白癜风

So to relieve the tension, I say, "It's just a skin disorder.
所以为了缓解紧张,我说,“这只是一种皮肤紊乱。
It's not contagious, it's not life-threatening, it just makes me look a little different."
它不会传染,也不会死人,它只是让我看起来不同。”
I end up talking to that guy for like five minutes. It was kind of cool, right?
我最后和这人聊了五分钟。有点酷,对吧?
And at the end of our conversation, he says, "You know, if you didn't have 'vitilargo'"
在我们谈话的最后,他说,“你知道吗,如果你没有麻风病”,
it's actually vitiligo, but he was trying, so... "if you didn't have vitilargo, you'd look just like that guy on TV."
其实是白癜风,但他在努力,所以...“如果你没有白癜风,你有点像电视里的那人。”
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。”
So things were going OK. I was having more good exchanges than bad, until that day.
所以一切很顺利。我有了更好而不是更糟的交流,直到那天。
I had a little time before work so I like to stop by the park to watch the kids play. They're funny.
在上班前的一段时间,我喜欢在公园停下来看孩子们玩耍。他们很有趣。
So I got a little too close, this little girl wasn't paying attention,
有天我站得有些太近了,有个小女孩没有注意到,
she's about two or three years old, she's running, she runs directly into my leg and falls down, pretty hard.
她大约2或3岁,她在奔跑,她直跑向我的腿,狠狠地摔倒了。
I thought she hurt herself, so I reach out to try and help the little girl and she looks at my vitiligo and she screams!
我想她伤到自己了,所以我伸出手去帮助这个小姑娘,她看着我的白癜风,尖叫起来!
Now kids are pure honesty. She's like two or three.
孩子们都很诚实。她大约2或3岁。
This little girl, she wasn't trying to be mean. She didn't have any malice in her heart.
这个小女孩,她并非有意刻薄。她心里没有任何恶意。
This little girl was afraid. She was just afraid. I didn't know what to do.
她只是害怕了。她只是害怕而已。我不知道该怎么做。
I just took a step back and put my hands by my side.
我只是退了一步,把手放在一边。
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 that I scare small children.
我花了一秒就意识到,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 and just put on my blinders, started going back out.
但我回到了我的原计划,戴上我的眼罩,开始往回走。
Two months later, I'm in a grocery store reaching on the bottom shelf, and I hear a little voice go, "You've got a boo-boo?"
两个月后,我在一家百货店伸手去够最底层的货架,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, but she's not crying,
像是2岁,3岁的,小女孩,但她没有哭,
so I kneel down in front of her and I don't speak two-year-old so I look up at the mom, and I say, "What did she say?"
所以我跪在她面前,我不会说2岁孩子的话,所以我看着她母亲,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, "Duh-duh-hoy?"
这个小女孩说,“Duh-duh-hoy?”
And so I look to mom for the translation, and she says, "She thinks you're hurt."
于是我看着她母亲求翻译,她说,“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 and touches my face.
这个小女孩伸出小手摸着我的脸。
She's trying to rub the chocolate into the vanilla or whatever she was doing. It was amazing! It was awesome.
她像是在试着把巧克力抹掉,露出香草,也可能有其他的想法。这让我惊讶万分!这太棒了。
Because she thought she knew what it was, she was giving me everything I wanted: kindness, compassion.
因为她以为她知道那是什么,她给了我我想要的一切:善良,同情。
And with the touch of that little hand, she healed a grown man's pain.
通过那只小手的触摸,她治愈了一个成年人的痛苦。
Yee-ha. Healed. I smiled for a long time on that one.
耶哈!治愈了!我因此高兴了很长时间。
Positivity is something worth fighting for, and the fight is not with others -- it's internal.
积极态度是我们值得抗争的东西,这个抗争不是与别人--这是内部的。
If you want to make positive changes in your life, you have to consistently be positive.
如果你想在生活中做出改变,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)。
I know, corny TV guy dad joke, my daughter hates it, but I don't care! Be positive!
我知道,这是老掉牙的电视冷笑话,我女儿讨厌这种,但我不在乎!要积极!
A 14-year-old boy years ago -- this kid had vitiligo -- he asked me to show my face on television.
几年前,一个14岁的小男孩--这个孩子有白癜风--他让我在电视上露面。
I wasn't going to do it, we've been over this, I thought I was going to lose my job, but the kid convinced me by saying,
我并不打算这样,我说过了,我认为这会让我失业,但这个孩子的话说服了我,
"If you show people what you look like and explain this to them, maybe they will treat me differently."
“如果你向人民展示你长什么样并给他们解释,也许他们对待我的态度也会不一样。”
Boom! Blinders off. I did a TV report, got an overwhelming response.
嘣!眼罩被除去了。我做了个电视报道,得到了极大的反响。
So I didn't know what to do. I took the attention and focused it back on the kid and other people that have vitiligo.
我不知道该做什么。我把注意力和焦点放在这个孩子和其他患有白癜风的人上。
I started a support group. Pretty soon, we noticed "VITFriends" and "V-Strong" support groups all over the country.
我成立了援助小组。很快,我们注意到了全国各地的“白癜风之友”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, we had over 300 people, all in celebration of our annual event. It was amazing. Thanks.
今年的6月25号,我们有超过300人前来庆祝我们的年度盛会。真是让人惊奇。谢谢。
Now, I'm not going to lie to you and say it was quick or easy for me to find a positive place living with this disease,
我不想说谎,说我很快或很容易就找到了带着这种疾病生活的积极位置,
but I found it. But I also got much more.
但我找到了。而且我也获得了更多。
I became a better man, the man I always wanted to be, the kind of guy who can stand up in front of a room full of strangers
我成为了一个更好的人,这个我一直想成为的人,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 and end it all with a smile,
讲述一些生活中最艰难的故事,并以微笑结束这一切,
and find happiness in the fact that you all just smiled back. Thank you.
还能从你们所有人的微笑中找到快乐。谢谢。

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