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← How I help people understand vitiligo

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Showing Revision 11 created 08/29/2019 by Brian Greene.

  1. When I was young,
  2. I wanted to be on TV:
  3. the lights, the cameras,
  4. the makeup,
  5. the glamorous life.
  6. And from my vantage point,
  7. just outside of a military base
    in Lawton, Oklahoma,
  8. I didn't make the distinction
    between TV reporter or actor.
  9. It was all the same to me.
  10. It was either,
  11. "Reporting live from Berlin"
  12. or "I shall attend her here and woo her
    with such spirit when she comes."
  13. (Laughter)

  14. It was all special,

  15. it was all the spotlight,
  16. and I just knew that it was for me.
  17. But somewhere along my journey,
  18. life happened.
  19. Ah, much better.

  20. (Applause)

  21. I have a disease called vitiligo.

  22. It started early in my career.
  23. It's an autoimmune disorder.
  24. It's where it looks like your skin
    is getting white patches,
  25. but it's actually void of color.
  26. It affects all ethnicities,
  27. it affects all ages,
  28. all genders,
  29. it's not contagious,
  30. it's not life-threatening,
  31. but it is mental warfare.
  32. It's tough.
  33. Now, I was diagnosed with this disease
  34. when I was working on
    "Eyewitness News" in New York City.
  35. I was in the biggest city in the country,
  36. I was on their flagship station
  37. and I was on their top-rated 5pm newscast.
  38. And the doctor looked me
    right in the eye and said,
  39. "You have a disease called vitiligo.
  40. It's a skin disorder
    where you lose your pigment.
  41. There is no cure,
    but there a-la-la-la-la".
  42. Charlie Brown's teacher.
  43. (Laughter)

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

  45. But I just couldn't give up.

  46. I couldn't quit,
  47. because we put too much into this.
  48. And by "we" I mean Mr. Moss,
  49. who sent me to speech and drama club
    instead of to detention,
  50. or my sister who paid
    part of my college expenses,
  51. or my mom,
  52. who simply gave me everything.
  53. I would not quit.
  54. So I decided to just put on makeup
    and keep it moving.

  55. I had to wear makeup anyway.
    It's TV, baby, right?
  56. I just put on a little more makeup,
    and everything's cool.
  57. And that actually
    went very well for years.
  58. I went from being a reporter
    in New York City
  59. to being a morning show anchor in Detroit,
  60. the Motor City.
  61. And as the disease got worse,
  62. I just put on more makeup.
  63. It was easy.
  64. Except for my hands.
  65. See, this disease is progressive
    and ever-changing.

  66. That means it comes and goes.
  67. At one point, for about a year and a half,
  68. my face was completely white.
  69. Yeah, it trips me out too.
  70. (Laughter)

  71. Yeah.

  72. And then, with a little help,
  73. some of the pigment came back,
  74. but living through this process
  75. was like two sides of a coin.
  76. When I'm at work
    and I'm wearing the makeup
  77. or wearing the makeup outside,
    I'm the TV guy.
  78. "Hey, how you doing everybody? Great."
  79. At home without the makeup,
  80. I'd take it off
    and it was like being a leper.
  81. The stares, constantly staring at me,
  82. the comments under their breath.
  83. Some people refused to shake my hand.
  84. Some people moved
    to the other side of the sidewalk,
  85. moved to the other side of the elevator.
  86. I felt like they were moving
    to the other side of life.
  87. It was tough,
  88. and those were some tough years.
  89. And honestly,
  90. sometimes I just had to shelter in place.
  91. You know what I mean?
  92. Kind of just stay at home
    till I get my mind right.
  93. But then I'd put my blinders back on,
  94. I'd get back out there,
  95. do my thing,
  96. but in the process of doing that,
  97. I developed this --
  98. angry, grumpy demeanor.
  99. Anger is an easy go-to,
  100. and people would leave me alone,
  101. but it just wasn't me.
  102. It wasn't me.
  103. I was allowing this disease to turn me
    into this angry, grumpy, spotted guy.
  104. It just wasn't me.
  105. So I had to change.

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

  118. Two-parter, not that deep.
  119. Number one: I would just let people stare,

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

  128. I would react with positivity,
  129. and that was simply a smile,
  130. or, at the very least,
  131. a nonjudgmental, kind face.
  132. Simple plan.

  133. But it turned out to be
    more difficult than I thought.
  134. But over time,
  135. things started to go OK.
  136. Like this one time, I'm at the store
    and this dude is like staring at me,
  137. like burning a hole
    in the side of my head.
  138. I'm shopping, he's staring at me,
  139. I'm going to the checkout,
    he's staring at me,
  140. I'm checking out, he's on the other line
    checking out, he's staring at me,
  141. we go to the exit,
    he's still staring at me,
  142. so I see he's staring
  143. and finally I turn to him
    and I go, "Hey buddy, what's up!"
  144. And he goes ...
  145. (Mumbles nervously) "Hi!"

  146. (Laughter)

  147. Awkward.

  148. So to relieve the tension, I say,

  149. "It's just a skin disorder.
  150. It's not contagious,
    it's not life-threatening,
  151. it just makes me look a little different."
  152. I end up talking to that guy
    for like five minutes.
  153. It was kind of cool, right?
  154. And at the end
    of our conversation, he says,
  155. "You know, if you
    didn't have 'vitilargo'" --
  156. it's actually vitiligo,
    but he was trying, so --
  157. (Laughter)

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

  159. (Laughter)

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

  161. (Laughter)

  162. So things were going OK.

  163. I was having more good exchanges than bad,
  164. until that day.
  165. I had a little time before work
  166. so I like to stop by the park
    to watch the kids play.
  167. They're funny.
  168. So I got a little too close,
    this little girl wasn't paying attention,
  169. she's about two or three years old,
  170. she's running, she runs directly
    into my leg and falls down, pretty hard.
  171. I thought she hurt herself,
  172. so I reach out to try
    and help the little girl
  173. and she looks at my vitiligo
  174. and she screams!
  175. Now kids are pure honesty.

  176. She's like two or three.
  177. This little girl,
    she wasn't trying to be mean.
  178. She didn't have any malice in her heart.
  179. This little girl was afraid.
  180. She was just afraid.
  181. I didn't know what to do.
  182. I just took a step back
    and put my hands by my side.
  183. I stayed in the house for two weeks
    and three days on that one.
  184. It took me a second
    to get my mind around the fact
  185. that I scare small children.
  186. And that was something
    that I could not smile away.
  187. But I jumped back on my plan

  188. and just put on my blinders,
  189. started going back out.
  190. Two months later, I'm in a grocery store
    reaching on the bottom shelf,

  191. and I hear a little voice go,
    "You've got a boo-boo?"
  192. It's like a two-year-old, three-year-old,
    same age, little girl,
  193. but she's not crying,
  194. so I kneel down in front of her
  195. and I don't speak two-year-old
    so I look up at the mom,
  196. and I say, "What did she say?"
  197. And she says, "She thinks
    you have a boo-boo."
  198. So I go, "No, I don't have
    a boo-boo, no, not at all."
  199. And the little girl says,
  200. "Duh-duh-hoy?"
  201. And so I look to mom for the translation,
  202. and she says,
  203. "She thinks you're hurt."
  204. And I say, "No, sweetie,
    I'm not hurt at all, I'm fine."
  205. And the little girl
    reaches out with that little hand
  206. and touches my face.
  207. She's trying to rub
    the chocolate into the vanilla
  208. or whatever she was doing.
  209. It was amazing!
  210. It was awesome.
  211. Because she thought she knew what it was,
  212. she was giving me everything I wanted:
  213. kindness, compassion.
  214. And with the touch of that little hand,
  215. she healed a grown man's pain.
  216. Yee-ha.
  217. Healed.
  218. I smiled for a long time on that one.
  219. Positivity is something
    worth fighting for,

  220. and the fight is not with others --
  221. it's internal.
  222. If you want to make
    positive changes in your life,
  223. you have to consistently be positive.
  224. My blood type is actually B positive.
  225. (Laughter)

  226. I know, corny TV guy dad joke,

  227. my daughter hates it, but I don't care!
  228. Be positive!
  229. (Laughs)

  230. A 14-year-old boy years ago --

  231. this kid had vitiligo --
  232. he asked me to show my face on television.
  233. I wasn't going to do it,
  234. we've been over this,
    I thought I was going to lose my job,
  235. but the kid convinced me by saying,
  236. "If you show people what you look like
    and explain this to them,
  237. maybe they will treat me differently."
  238. Boom! Blinders off.

  239. I did a TV report,
  240. got an overwhelming response.
  241. So I didn't know what to do.
  242. I took the attention
    and focused it back on the kid
  243. and other people that have vitiligo.
  244. I started a support group.
  245. Pretty soon, we noticed "VITFriends"
  246. and "V-Strong" support groups
    all over the country.
  247. In 2016, we all came together
    and celebrated World Vitiligo Day.
  248. This past June 25,
  249. we had over 300 people,
  250. all in celebration of our annual event.
  251. It was amazing.
  252. (Applause)

  253. Thanks.

  254. Now, I'm not going to lie to you

  255. and say it was quick or easy
  256. for me to find a positive place
    living with this disease,
  257. but I found it.
  258. But I also got much more.
  259. I became a better man,
  260. the man I always wanted to be,
  261. the kind of guy who can stand up
    in front of a room full of strangers
  262. and tell some of
    the toughest stories in his life
  263. and end it all with a smile,
  264. and find happiness in the fact
    that you all just smiled back.
  265. Thank you.

  266. (Applause)