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← Canary In a Coal Mine Kickstarter Appeal

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Showing Revision 4 created 10/27/2013 by canaryinacoalminefilm.

  1. Affects one million people in the United States.
  2. Less than half the doctors in this country know the name of this illness.
  3. I don't know of another illness like that.
  4. This is probably the craziest story I have ever heard of in my life.
  5. It was what should have been the happiest moment of my life. I was engaged to the love of my life.
  6. I was a PhD student at Harvard. And then...WHAM! I had a hundred-and-five-degree-fever that lasted for 10 days.
  7. The doctor had said to me, "Everything you're feeling is in your head."
  8. I had a blackout. When I came to I couldn't read a word.
  9. I disappeared entirely and no one knew why.
  10. Among the people who hadn't a clue was me.
  11. Except for the doctors, nobody doubted I was really sick.
  12. It's a story that you need to see to believe.
  13. Are you tired all the time? Tired. Tired all the time. I just slept all the time.
  14. Why am I so darn tired all the time?
  15. Chronic Fatigue Sundrome.
  16. Chronic Fatigue Syndrome. Chronic Fatigue Syndrome.
  17. La Fatigue Chronique. Chronic Fatigue Syndrome?
  18. No, that can't be right. You're too sick.
  19. Hi. I'm Jennifer Brea. I'm Kiran Chitanvis.
  20. And this is our Kickstarter Campaign for Canary In A Coal Mine,
  21. a film that takes a look into the lives of people living with one of the world's
  22. most misunderstood diseases - Myalgic Encephalomyelitis.
  23. It's a disease suffered by a subset of people diagnosed each year with Chronic Fatigue Syndrome.
  24. Had I not become ill with M.E. three years ago, I would have never believed the story
  25. was possible. In order to make this film, we need your help. Take a look.
  26. I was at a Chinese restaurant with some friends and when the check came
  27. I couldn't sign my name. My brain was burning.
  28. He said maybe I was stressed or depressed or sad or
  29. most implausibly that I wanted to be sick.
  30. We doctors are the most arrogant of professionals.
  31. I've got the answer right here, ladies and gentlemen.
  32. To everything that ails you!
  33. We just don't have doctors going to guys and saying if you would change the color of your hair, you would feel better.
  34. If you could, you know, get a younger wife, you would feel better.
  35. Ones gotta insist that this is a physical disease, that this is not a psychiatric disease.
  36. It's an acquired form of an immunodeficiency disorder.
  37. If you go back historically, you can see illnesses very similar to this called
  38. many different things. Toxins can insidiously creep in to every aspect of our
  39. lives, flipping certain individuals who've might otherwise be resistant to an
  40. infection. The severity of the illness is equivalent to
  41. congestive heart failure. We think that there is very very likely to be some
  42. sort of infectious culprit. It was just a
  43. group of people, a committee that happened to be pulled together by the CDC that came up with this perfectly
  44. horrid name, Chronic Fatigue Syndrome.
  45. I was frustrated and normally I would write
  46. in a journal to process my experience but I
  47. had lost the ability to write, and so that's why I started filming these video
  48. diaries, and it was really just a personal space to process what I was feeling
  49. and to sort of deal with some of that anger
  50. of no one knows what's wrong with me,
  51. no one has a treatment for me
  52. and everything that I love and care about
  53. is slipping away.
  54. You might saying to yourself, if I really couldn't
  55. stand up, why would I be filming it? Well, I kind of
  56. think that someone should see this.
  57. As I dug deeper, I realized that my symptoms
  58. followed a pattern and that there were millions
  59. of people around the world who had my disease
  60. As I shared my story on facebook, old friends
  61. from college and high school sort of coming
  62. out of the woodwork to share their stories.
  63. They didn't have M.E. but they had other
  64. chronic illnesses, auto immune diseases and
  65. I started to realize that, you know, this is actually
  66. a universal story. Our approach in making
  67. this film is to give the audience a really
  68. subjective view into the lives of people
  69. with this disease. What we really want to do
  70. is to bring the audience in and to make people
  71. feel for the first time what it's like to
  72. live with this devastating illness. It's just beyond any words.
  73. The participants in the film are doing a lot
  74. of self-filmed footage and it really gives
  75. you a visceral view into their lives in a
  76. way that you would never get by bringing a
  77. film crew into somebody else's house.
  78. Taking on a project like this is completely insane.
  79. It's difficult to travel everytime we go,
  80. you know, one hour from Princeton to New York, we
  81. have to pack all of my own food. It's like
  82. there's more gear for to take care of me than
  83. there is like camera gear we're packing in the car
  84. for the shoot. She conducts the interviews for most of the shoots
  85. from a different room and conducts them over skype
  86. through a teleprompter.
  87. I can interview people whether I'm in the next room or at home in bed and, you know,
  88. there's a crew halfway around the world shooting.
  89. In addition to a few, new technological things we're gonna be trying out.
  90. Some tricks up our sleeves. Got a few tricks.
  91. The diagnosis of M.E. is really in a place
  92. where something like epilepsy or multiple
  93. sclerosis was a hundred to even thirty years ago.
  94. And how many more diseases will this happen to unless our approach changes.
  95. There's $16 million dollars in male-pattern baldness
  96. and we got $3 million bucks going to Chronic Fatigue Syndrome.
  97. My husband has asked me, you know, "Jen, what do you care more about, your health or this film?"
  98. There's no way we're gonna go into the mall and show our numbers.
  99. We can't even walk to the mailbox." (laughing)
  100. Even though we often feel like, whatever it is that we are grappling with, no one
  101. else can understand the fact is that we will
  102. all have that experience of coming across an
  103. obstacle that feels insurmountable.
  104. There was a future you take for granted everyday
  105. and never articulate to yourself and yet
  106. it's always there and when you come down
  107. with an illness that has no end, it strips
  108. away that idea of a future.
  109. When we're in that moment that everything
  110. changes, how do we react?
  111. When I got sick, he took care of me.
  112. But I'd rather carry you around all my life than have anything happen to you.
  113. We kept saying, you know, don't get discouraged, you never know what's around
  114. the corner. Things can change.
  115. I have this belief that if I can read a lot of science
  116. and do a lot of self-experimentation that I can turn this
  117. thing around. We believe in this story and
  118. we're gonna do everything we can to see this
  119. film happen. Yes, we would hope to be taken as seriously as male-pattern baldness
  120. but I am not looking for any miracles here.
  121. No one can promise a cure but one very important step towards that goal is
  122. visibility. There are things that could be
  123. happening today that would improve the lives
  124. of patients with living with M.E. Visibility means more
  125. research. It means not having to wait 5
  126. years for a diagnosis. Visibility means not having doctors give you advice that
  127. can cause you harm. Visibility means that people with
  128. M.E. would no longer be forcibly institutionalized because
  129. their doctor that has never heard of their disease.
  130. Right now, to most of the world, we are invisible.
  131. Fifty Thousand dollars is what we need to
  132. make it through the completion of production and have a film that we're really proud of but to make the
  133. film that we dream of, that's just the beginning.
  134. And we're going to need a lot of help to get there.
  135. Kickstarter is an all-or-nothing campaign
  136. and if we don't reach our funding goal, then
  137. we don't get to keep any of what we have raised.
  138. Up to this point, we've shot about a week's
  139. worth of footage and just imagine what we
  140. could do with the funds to shoot four weeks, six weeks, and to do it not just
  141. in the New Jersey-New York area but around the world.
  142. We want this film to have such an impact that I could walk up to anyone on the street
  143. and say, "Hi! I'm Jen and I have Myalgic Encephalomyelitis"
  144. and they would actually know what the f@#$ that was.
  145. Go to our Kickstarter page, check out the link and make a donation to the film.
  146. You can also follow us on Twitter or Facebook
  147. or even just pass along either the Kickstarter link, the Facebook Page or the Twitter handle
  148. or preferably all of the above. Or all the above!!!
  149. The biggest way you can help us is by
  150. spreading the word and then scroll down
  151. and check out some of our other video
  152. as well as the awesome rewards by writers and
  153. artists who are also living with M.E.
  154. Join us on our mission to give a true face
  155. to this disease that's so misunderstood.
  156. Most of us look at what's around us and see
  157. very little and yet we have the capacity to
  158. see infinity in the smallest of things.
  159. This is our life and everyday we're just so grateful for it.
  160. Plus you learn from everything you survive.