演講MP3+雙語文稿:我是如何幫助大家了解白癜風(fēng)的

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【演講者及介紹】Lee Thomas

李·托馬斯一生都愛看、愛寫、愛分享故事。

【演講主題】我是如何幫助大家了解白癜風(fēng)的

How I help people understand vitiligo

【中英文字幕】

翻譯者 psjmz mz 校對者 Lipeng Chen

00:14

When I was young, I wanted to be on TV: the lights, the cameras, the makeup, the glamorous life. And from my vantage point, just outside of a military base in Lawton, Oklahoma, I didn't make the distinction between TV reporter or actor. It was all the same to me. It was either, "Reporting live from Berlin" or "I shall attend her here and woo her with such spirit when she comes."

我年輕時， 我想上電視： 燈光，鏡頭， 妝容， 耀眼的生活。 從我的角度而言， 住在俄克拉荷馬州勞頓 的一個軍事基地外， 我根本分不出電視記者和演員的區(qū)別。 這對我都是一樣的。 要么是 “柏林現(xiàn)場報道”， 或是“當(dāng)她到來的時候，我要用 這種精神侍候她和追求她?！?/p>

00:43

(Laughter)

（笑聲）

00:44

It was all special, it was all the spotlight, and I just knew that it was for me. But somewhere along my journey, life happened.

一切都很特別， 一切都在聚光燈下， 并且我就是知道它是為我而設(shè)的。 但就在我生命的某個時間點， 生活發(fā)生了改變。

02:36

I have a disease called vitiligo. It started early in my career. It's an autoimmune disorder. It's where it looks like your skin is getting white patches, but it's actually void of color. It affects all ethnicities, it affects all ages, all genders, it's not contagious, it's not life-threatening, but it is mental warfare. It's tough. Now, I was diagnosed with this disease when I was working on "Eyewitness News" in New York City. I was in the biggest city in the country, I was on their flagship station and I was on their top-rated 5pm newscast. And the doctor looked me right in the eye and said, "You have a disease called vitiligo. It's a skin disorder where you lose your pigment. There is no cure, but there a-la-la-la-la". Charlie Brown's teacher.

我有一種叫白癜風(fēng)的病。 它在我職業(yè)早期就開始了。 這是一種原發(fā)性的免疫疾病。 就是皮膚有些地方看起來有白斑， 但這些地方實際上是沒有顏色的。 它影響所有的人種， 它影響所有的年齡群體， 所有的性別， 它不會傳染， 不會造成生命威脅， 但它會帶來精神戰(zhàn)爭。 這非常艱難。 當(dāng)我在紐約“目擊者新聞”工作時， 我被診斷患有這個疾病。 我在這個國家最大的城市， 我在旗艦電視臺工作， 我上了他們下午5點 收視率最高的新聞節(jié)目。 醫(yī)生望著我的眼睛說， “你患了一種叫白癜風(fēng)的病， 這是一種失去色素的皮膚病。 無藥可治，但......” 他就這么喋喋不休。

03:37

(Laughter)

（笑聲）

03:38

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

他說沒藥可治，我聽到的全是， “我的職業(yè)生涯結(jié)束了?！?/p>

03:44

But I just couldn't give up. I couldn't quit, because we put too much into this. And by "we" I mean Mr. Moss, who sent me to speech and drama club instead of to detention, or my sister who paid part of my college expenses, or my mom, who simply gave me everything. I would not quit.

但我就是不能放棄。 我不能退出， 因為我們投入了太多。 “我們”的意思是莫斯先生， 他送我去演講和戲劇俱樂部， 而沒有把我送去拘留所， 或支付我部分大學(xué)花費的姐姐， 或是我母親， 她給了我一切。 我不能退出。

04:19

So I decided to just put on makeup and keep it moving. I had to wear makeup anyway. It's TV, baby, right? I just put on a little more makeup, and everything's cool. And that actually went very well for years. I went from being a reporter in New York City to being a morning show anchor in Detroit, the Motor City. And as the disease got worse, I just put on more makeup. It was easy. Except for my hands.

所以我決定化點妝，繼續(xù)下去。 反正我也得化妝，畢竟 要上電視啊，對吧？ 我只要多化點妝，就可以一切照舊了。 前幾年這方法確實很有效。 我從一個紐約的記者 成為了底特律，這個汽車城 的早間節(jié)目主持人。 隨著病情加重， 我就化更多的妝。 這很容易。 除了我的手。

04:56

See, this disease is progressive and ever-changing. That means it comes and goes. At one point, for about a year and a half, my face was completely white. Yeah, it trips me out too.

這種疾病是不斷發(fā)展和變化的。 這意味著它會出現(xiàn)和消失。 在某個時刻，在大約 1 年半的時間， 我的臉完全白了。 是的，我完全凌亂了。

05:13

And then, with a little help, some of the pigment came back, but living through this process was like two sides of a coin. When I'm at work and I'm wearing the makeup or wearing the makeup outside, I'm the TV guy. "Hey, how you doing everybody? Great." At home without the makeup, I'd take it off and it was like being a leper. The stares, constantly staring at me, the comments under their breath. Some people refused to shake my hand. Some people moved to the other side of the sidewalk, moved to the other side of the elevator. I felt like they were moving to the other side of life. It was tough, and those were some tough years. And honestly, sometimes I just had to shelter in place. You know what I mean? Kind of just stay at home till I get my mind right. But then I'd put my blinders back on, I'd get back out there, do my thing, but in the process of doing that, I developed this -- angry, grumpy demeanor. Anger is an easy go-to, and people would leave me alone, but it just wasn't me. It wasn't me. I was allowing this disease to turn me into this angry, grumpy, spotted guy. It just wasn't me.

然后，憑借一點幫助， 一些色素回來了， 但生活在這個過程中 就像硬幣的兩面。 當(dāng)我工作時帶上妝容， 或在外面帶上面具時，我是電視人。 “嘿，大家好嗎？太好了?！?在家沒化妝時， 我就像麻風(fēng)病人一樣。 那眼神，不停地盯著我， 人們低聲議論著。 有些人拒絕和我握手。 有些人閃到路的一旁， 移到電梯的另一角。 我感覺他們走到生命的另一邊去了。 這很艱難， 那是相當(dāng)艱難的歲月。 并且坦白說， 有時候，我只想找個地方躲起來。 你知道我的意思嗎？ 就這樣呆在家里，直到想明白。 但然后我會帶上我的眼罩， 我會回到那里， 做我的事情， 但在做這些事情的過程中， 我養(yǎng)成了這個—— 憤怒、脾氣暴躁的習(xí)慣。 憤怒是很容易的， 人們會讓我一個人靜靜， 但這并不是我。 這不是我。 我任由這個疾病把我變成這個憤怒， 脾氣暴躁，滿身斑點的家伙。 這并不是我。

06:52

So I had to change. I knew I could not change other people. People are going to react and do what they gonna do. But there was a cold hard reality as well. I was the one that was showing anger, sadness and isolating myself. It was actually a choice. I was walking out the door every day expecting the world to react with negativity, so I just gave them that mean face first. If I wanted change, the change had to start with me.

所以我得做出改變。 我知道我不能改變別人。 人們有自己的反應(yīng)，有他們想做的事。 但也有另一個殘酷的現(xiàn)實。 我是那個 顯露憤怒，悲傷 和自我隔離的人。 這實際上是一種選擇。 我每天走出門 預(yù)期世界會做出負面的反應(yīng)， 所以我先給了他們一張刻薄的臉。 如果我想要改變， 這個改變應(yīng)該從我開始。

07:38

So I came up with a plan. Two-parter, not that deep.

于是我想出了一個計劃。 兩部分，并不復(fù)雜。

07:45

Number one: I would just let people stare, drink it in, stare all you want, and not react. Because the truth is when I got this disease, I was all up in the mirror staring at every new spot trying to figure out what is going on. So I needed to let other people have that same opportunity to get that visual understanding.

第一：我會讓人盯著看， 隨他們?nèi)?，隨便看， 不做反應(yīng)。 因為實際上當(dāng)我患病時， 我曾對著鏡子盯著每一個地方， 試圖搞清楚發(fā)生了什么。 所以我需要讓別人也有同樣的機會 去得到視覺上的理解。

08:12

Number two: I would react with positivity, and that was simply a smile, or, at the very least, a nonjudgmental, kind face.

第二： 我會積極回應(yīng)， 用一個微笑， 或者，至少， 一張不帶偏見的和善的臉。

08:27

Simple plan. But it turned out to be more difficult than I thought. But over time, things started to go OK. 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. I'm shopping, he's staring at me, I'm going to the checkout, he's staring at me, 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, so I see he's staring and finally I turn to him and I go, "Hey buddy, what's up!" And he goes ...

很簡單的計劃。 但結(jié)果比我想得困難。 但時間久了， 事情開始變好。 像有一次，我在商店里， 有人盯著我看， 就像要在我腦袋旁燒出一個洞來。 我在購物，他盯著我看， 我去收銀臺，他盯著我看， 我結(jié)完賬了，他在 另一邊結(jié)賬，還在盯著我看， 我們走到出口，他仍然盯著我， 我看到他在盯著我， 于是最終我轉(zhuǎn)向他問： “嘿，伙計，怎么了！” 他有些……

09:01

(Mumbles nervously) "Hi!"

（語無倫次）“嗨！”

09:03

(Laughter)

（笑聲）

09:04

Awkward.

太尷尬了。

09:06

So to relieve the tension, I say, "It's just a skin disorder. It's not contagious, it's not life-threatening, it just makes me look a little different." I end up talking to that guy for like five minutes. It was kind of cool, right? And at the end of our conversation, he says, "You know, if you didn't have 'vitilargo'" -- it's actually vitiligo, but he was trying, so --

所以為了緩解緊張，我說， “這只是一種皮膚紊亂。 它不會傳染，也不會死人， 它只是讓我看起來不同。” 我最后和這人聊了五分鐘。 有點酷，對吧？ 在我們談話的最后，他說， “你知道嗎，如果你沒有麻風(fēng)病”—— 其實是白癜風(fēng)，但他在努力，所以——

09:30

(Laughter)

（笑聲）

09:32

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

“如果你沒有白癜風(fēng)， 你有點像電視里的那人。”

09:35

(Laughter)

（笑聲）

09:37

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

我這樣，“哈哈，是的， 我明白，我明白?！?/p>

09:41

(Laughter)

（笑聲）

09:42

So things were going OK. I was having more good exchanges than bad, until that day. I had a little time before work so I like to stop by the park to watch the kids play. They're funny. So I got a little too close, this little girl wasn't paying attention, she's about two or three years old, she's running, she runs directly into my leg and falls down, pretty hard. 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!

所以一切很順利。 我有了更好而不是更糟的交流， 直到那天。 在上班前的一段時間， 我喜歡在公園 停下來看孩子們玩耍。 他們很有趣。 有天我站得有些太近了， 有個小女孩沒有注意到， 她大約 2 或 3 歲， 她在奔跑，她直跑向我的腿， 狠狠地摔倒了。 我想她傷到自己了， 所以我伸出手去幫助這個小姑娘， 她看著我的白癜風(fēng)， 尖叫起來！

10:25

Now kids are pure honesty. She's like two or three. This little girl, she wasn't trying to be mean. She didn't have any malice in her heart. This little girl was afraid. She was just afraid. I didn't know what to do. 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. It took me a second to get my mind around the fact that I scare small children. And that was something that I could not smile away.

孩子們都很誠實。 她大約 2 或 3 歲。 這個小女孩，她并非有意刻薄。 她心里沒有任何惡意。 她只是害怕了。 她只是害怕而已。 我不知道該怎么做。 我只是退了一步，把手放在一邊。 因為這事，我在家里呆了 兩個星期零三天。 我花了一秒就意識到， 我嚇到小孩子了。 這是我無法一笑而過的事情。

11:15

But I jumped back on my plan and just put on my blinders, started going back out.

但我回到了我的原計劃， 戴上我的眼罩， 開始往回走。

11:27

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?" It's like a two-year-old, three-year-old, same age, little girl, but she's not crying, 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?" 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." And the little girl says, "Duh-duh-hoy?" And so I look to mom for the translation, and she says, "She thinks you're hurt." And I say, "No, sweetie, I'm not hurt at all, I'm fine." And the little girl reaches out with that little hand and touches my face. She's trying to rub the chocolate into the vanilla or whatever she was doing. It was amazing! It was awesome. Because she thought she knew what it was, she was giving me everything I wanted: kindness, compassion. And with the touch of that little hand, she healed a grown man's pain. Yee-ha. Healed. I smiled for a long time on that one.

兩個月后，我在一家百貨店 伸手去夠最底層的貨架， 我聽到一個小聲音說， “你有boo-boo？” 像是 2 歲，3 歲的，小女孩， 但她沒有哭， 所以我跪在她面前， 我不會說 2 歲孩子的話， 所以我看著她母親， 我說，“她在說什么？” 她母親說，“她覺得你有傷口。” 于是我說，“不， 我沒有傷口，一點都沒?！?這個小女孩說， "Duh-duh-hoy?" 于是我看著她母親求翻譯， 她說， “她認為你受傷了”。 我說，“沒有，親愛的， 我一點傷都沒有，我很好?！?這個小女孩伸出小手 摸著我的臉。 她像是在試著 把巧克力抹掉，露出香草， 也可能有其他的想法。 這讓我驚訝萬分！ 這太棒了。 因為她以為她知道那是什么， 她給了我我想要的一切： 善良，同情。 通過那只小手的觸摸， 她治愈了一個成年人的痛苦。 耶哈！ 治愈了！ 我因此高興了很長時間。

12:48

Positivity is something worth fighting for, and the fight is not with others -- it's internal. If you want to make positive changes in your life, you have to consistently be positive. My blood type is actually B positive.

積極態(tài)度是我們值得抗爭的東西， 這個抗爭不是與別人—— 這是內(nèi)部的。 如果你想在生活中做出改變， 你得持續(xù)保持積極。 我的血型是 B 陽性 （與保持積極諧音）。

13:16

(Laughter)

（笑聲）

13:19

I know, corny TV guy dad joke, my daughter hates it, but I don't care! Be positive!

我知道，這是老掉牙的電視冷笑話， 我女兒討厭這種，但我不在乎！ 要積極！

13:25

(Laughs)

（笑聲）

13:33

A 14-year-old boy years ago -- this kid had vitiligo -- he asked me to show my face on television. 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, "If you show people what you look like and explain this to them, maybe they will treat me differently."

幾年前，一個 14 歲的小男孩—— 這個孩子有白癜風(fēng)—— 他讓我在電視上露面。 我并不打算這樣， 我說過了，我認為這會讓我失業(yè)， 但這個孩子的話說服了我， “如果你向人民展示 你長什么樣并給他們解釋， 也許他們對待我的態(tài)度也會不一樣。”

13:57

Boom! Blinders off. I did a TV report, got an overwhelming response. 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. I started a support group. Pretty soon, we noticed "VITFriends" and "V-Strong" support groups all over the country. In 2016, we all came together and celebrated World Vitiligo Day. This past June 25, we had over 300 people, all in celebration of our annual event. It was amazing.

嘣！眼罩被除去了。 我做了個電視報道， 得到了極大的反響。 我不知道該做什么。 我把注意力和焦點放在這個孩子 和其他患有白癜風(fēng)的人上。 我成立了援助小組。 很快，我們注意到了 全國各地的“白癜風(fēng)之友” 和“白癜風(fēng)-堅強”援助群組。 2016 年，我們聚集在一起 慶祝世界白癜風(fēng)日。 今年的 6 月 25 號， 我們有超過 300 人 前來慶祝我們的年度盛會。 真是讓人驚奇。

14:45

(Applause)

（鼓掌）

14:47

Thanks.

謝謝。

14:52

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, but I found it. But I also got much more. 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 and tell some of the toughest stories in his life and end it all with a smile, and find happiness in the fact that you all just smiled back.

我不想說謊， 說我很快或很容易 就找到了帶著這種疾病 生活的積極位置， 但我找到了。 而且我也獲得了更多。 我成為了一個更好的人， 這個我一直想成為的人， 這個人可以站在滿屋子 的陌生人面前 講述一些生活中最艱難的故事， 并以微笑結(jié)束這一切， 還能從你們所有人的 微笑中找到快樂。

15:36

Thank you.

謝謝。

15:37

(Applause)

（鼓掌）