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How I help people understand vitiligo

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    When I was young,
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    I wanted to be on TV:
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    the lights, the cameras,
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    the makeup,
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    the glamorous life.
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    And from my vantage point,
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    just outside of a military base
    in Lawton, Oklahoma,
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    I didn't make the distinction
    between TV reporter or actor.
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    It was all the same to me.
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    It was either,
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    "Reporting live from Berlin"
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    or "I shall attend her here and woo her
    with such spirit when she comes."
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    (Laughter)
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    It was all special,
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    it was all the spotlight,
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    and I just knew that it was for me.
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    But somewhere along my journey,
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    life happened.
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    Ah, much better.
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    (Applause)
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    I have a disease called vitiligo.
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    It started early in my career.
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    It's an autoimmune disorder.
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    It's where it looks like your skin
    is getting white patches,
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    but it's actually void of color.
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    It affects all ethnicities,
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    it affects all ages,
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    all genders,
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    it's not contagious,
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    it's not life-threatening,
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    but it is mental warfare.
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    It's tough.
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    Now, I was diagnosed with this disease
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    when I was working on
    "Eyewitness News" in New York City.
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    I was in the biggest city in the country,
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    I was on their flagship station
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    and I was on their top-rated 5pm newscast,
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    and the doctor looked me
    right in the eye and said,
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    "You have a disease called vitiligo.
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    It's a skin disorder
    where you lose your pigment.
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    There is no cure,
    but there a-la-la-la-la".
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    Charlie Brown's teacher.
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    (Laughter)
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    He said there is no cure.
    All I heard was, "My career is over."
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    But I just couldn't give up.
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    I couldn't quit,
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    because we put too much into this,
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    and by "we" I mean Mr. Moss,
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    who sent me to speech and drama club
    instead of to detention,
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    or my sister who paid
    part of my college expenses,
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    or my mom,
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    who simply gave me everything.
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    I would not quit.
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    So I decided to just put on makeup
    and keep it moving.
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    I had to wear makeup anyway.
    It's TV, baby, right?
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    I just put on a little more makeup
    and everything's cool.
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    And that actually
    went very well for years.
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    I went from being a reporter
    in New York City
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    to being a morning show anchor in Detroit,
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    the Motor City,
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    and as the disease got worse,
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    I just put on more makeup.
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    It was easy.
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    Except for my hands.
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    See, this disease is progressive
    and ever-changing.
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    That means it comes and goes.
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    At one point, for about a year and a half,
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    my face was completely white.
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    Yeah, it trips me out too.
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    (Laughter)
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    Yeah.
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    And then, with a little help,
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    some of the pigment came back,
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    but living through this process
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    was like two sides of a coin.
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    When I'm at work
    and I'm wearing the makeup
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    or wearing the makeup outside,
    I'm the TV guy.
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    "Hey, how you doing everybody? Great."
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    At home without the makeup,
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    I'd take it off
    and it was like being a leper.
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    The stares, constantly staring at me,
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    the comments under their breath.
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    Some people refused to shake my hand.
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    Some people moved
    to the other side of the sidewalk,
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    moved to the other side of the elevator.
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    I felt like they were moving
    to the other side of life.
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    It was tough,
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    and those were some tough years.
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    And honestly,
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    sometimes I just had to shelter in place.
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    You know what I mean?
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    Kind of just stay at home
    til I get my mind right.
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    But then I'd put my blinders back on,
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    I'd get back out there,
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    do my thing,
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    but in the process of doing that,
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    I developed this --
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    angry, grumpy demeanor.
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    Anger is an easy go-to,
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    and people would leave me alone,
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    but it just wasn't me.
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    It wasn't me.
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    I was allowing this disease to turn me
    into this angry, grumpy, spotted guy.
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    It just wasn't me.
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    So I had to change.
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    I knew I could not change other people.
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    People are going to react
    and do what they gonna do.
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    But there was a cold hard reality as well.
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    I was the one
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    that was showing anger, sadness
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    and isolating myself.
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    It was actually a choice.
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    I was walking out the door every day
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    expecting the world
    to react with negativity,
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    so I just gave them that mean face first.
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    If I wanted change,
    the change had to start with me.
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    So I came up with a plan.
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    Two-parter, not that deep.
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    Number one: I would just let people stare,
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    drink it in, stare all you want,
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    and not react.
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    Because the truth is
    when I got this disease,
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    I was all up in the mirror
    staring at every new spot
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    trying to figure out what is going on.
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    So I needed to let other people
    have that same opportunity
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    to get that visual understanding.
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    Number two:
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    I would react with positivity,
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    and that was simply a smile,
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    or, at the very least,
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    a nonjudgmental, kind face.
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    Simple plan.
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    But it turned out to be
    more difficult than I thought.
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    But over time,
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    things started to go OK.
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    Like this one time, I'm at the store
    and this dude is like staring at me,
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    like burning a hole
    in the side of my head.
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    I'm shopping, he's staring at me,
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    I'm going to the checkout,
    he's staring at me,
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    I'm checking out, he's on the other line
    checking out, he's staring at me,
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    we go to the exit,
    he's still staring at me,
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    so I see he's staring
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    and finally I turn to him
    and I go, "Hey buddy, what's up!"
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    And he goes ...
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    (Mumbling nervously) "Hi!"
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    (Laughter)
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    Awkward.
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    So to relieve the tension, I say,
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    "It's just a skin disorder.
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    It's not contagious,
    it's not life-threatening,
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    it just makes me look a little different."
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    I end up talking to that guy
    for like five minutes.
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    It was kind of cool, right?
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    And at the end
    of our conversation, he says,
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    "You know, if you
    didn't have vitilargo" --
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    it's actually vitiligo,
    but he was trying, so --
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    (Laughter)
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    "if you didn't have vitilargo,
    you'd look just like that guy on TV."
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    (Laughter)
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    And I was like, "Haha,
    yeah, I get that, I get that, yeah."
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    (Laughter)
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    So things were going OK.
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    I was having more good exchanges than bad,
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    until that day.
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    I had a little time before work
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    so I like to stop by the park
    to watch the kids play.
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    They're funny.
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    So I got a little too close,
    this little girl wasn't paying attention,
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    she's about two or three years old,
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    she's running, she runs directly
    into my leg and falls down, pretty hard.
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    I thought she hurt herself,
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    so I reach out to try
    and help the little girl
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    and she looks at my vitiligo
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    and she screams!
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    Now kids are pure honesty.
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    She's like two or three.
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    This little girl,
    she wasn't trying to be mean.
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    She didn't have any malice in her heart.
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    This little girl was afraid.
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    She was just afraid.
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    I didn't know what to do.
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    I just took a step back
    and put my hands by my side.
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    I stayed in the house for two weeks
    and three days on that one.
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    It took me a second
    to get my mind around the fact
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    that I scare small children.
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    And that was something
    that I could not smile away.
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    But I jumped back on my plan
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    and just put on my blinders,
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    started going back out.
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    Two months later, I'm in a grocery store
    reaching on the bottom shelf,
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    and I hear a little voice go,
    "You've got a boo-boo?"
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    It's like a two-year-old, three-year-old,
    same age, little girl,
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    but she's not crying,
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    so I kneel down in front of her
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    and I don't speak two-year-old
    so I look up at the mom,
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    and I say, "What did she say?"
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    And she says, "She thinks
    you have a boo-boo."
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    So I go, "No, I don't have
    a boo-boo, no, not at all."
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    And the little girl says,
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    "Duh-duh-hoy?"
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    And so I look to mom for the translation,
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    and she says,
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    "She thinks you're hurt."
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    And I say, "No, sweetie,
    I'm not hurt at all, I'm fine."
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    And the little girl
    reaches out with that little hand
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    and touches my face.
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    She's trying to rub
    the chocolate into the vanilla
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    or whatever she was doing.
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    It was amazing!
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    It was awesome.
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    Because she thought she knew what it was,
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    she was giving me everything I wanted:
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    kindness, compassion.
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    And with the touch of that little hand,
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    she healed a grown man's pain.
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    Yee-ha.
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    Healed.
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    I smiled for a long time on that one.
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    Positivity is something
    worth fighting for,
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    and the fight is not with others,
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    it's internal.
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    If you want to make
    positive changes in your life,
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    you have to consistently be positive.
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    My blood type is actually B positive.
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    (Laughter)
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    I know, corny TV guy dad joke,
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    my daughter hates it, but I don't care!
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    Be positive!
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    (Laughs)
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    A 14-year-old boy years ago --
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    this kid had vitiligo --
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    he asked me to show my face on television.
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    I wasn't going to do it,
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    we've been over this,
    I thought I was going to lose my job,
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    but the kid convinced me by saying,
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    "If you show people what you look like
    and explain this to them,
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    maybe they will treat me differently."
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    Boom! Blinders off.
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    I did a TV report,
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    got an overwhelming response.
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    So I didn't know what to do.
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    I took the attention
    and focused it back on the kid
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    and other people that have vitiligo.
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    I started a support group.
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    Pretty soon, we noticed "VITFriends"
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    and "V-Strong" support groups
    all over the country.
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    In 2016, we all came together
    and celebrated World Vitiligo Day.
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    This past June 25,
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    we had over 300 people,
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    all in celebration of our annual event.
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    It was amazing.
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    (Applause)
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    Thanks.
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    Now, I'm not going to lie to you
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    and say it was quick or easy
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    for me to find a positive place
    living with this disease,
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    but I found it.
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    But I also got much more.
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    I became a better man,
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    the man I always wanted to be,
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    the kind of guy who can stand up
    in front of a room full of strangers
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    and tell some of
    the toughest stories in his life
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    and end it all with a smile,
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    and find happiness in the fact
    that you all just smiled back.
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    Thank you.
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    (Applause)
Title:
How I help people understand vitiligo
Speaker:
Lee Thomas
Description:

more » « less
Video Language:
English
Team:
closed TED
Project:
TEDTalks
Duration:
15:44

English subtitles

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