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Report back from World Premier of I REPRESENT: INVISIBLE NO MORE

Discussion in 'Action Alerts and Advocacy' started by RivkaRivka, Jul 14, 2011.

  1. RivkaRivka

    RivkaRivka Senior Member

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    July 14, 2011 -- Report back from World Premier of I REPRESENT: INVISIBLE NO MORE

    Feel free to disseminate.

    Good news! The "guerilla street theater" performance of the play I REPRESENT: INVISIBLE NO MORE was performed today -- its world premier. This play has actors representing real-life people who are, by and large, either homebound or bedridden with ME/CFS (chronic fatigue syndrome). They have 2 performances total, today and tomorrow, both outside and in front of a health care center at Missouri State University, Springfield, MO -- hence the "guerrilla street theater" aspect of this project. (They are considering trying to find a third venue for a third show, something indoors. Unsure at this time.)

    I talked briefly with the 4 actors via speaker phone today, a half hour before their first show. As the playwright and co-organizer, I like to do this as a check-in/pep talk type of thing, even if I can't physically be there. I asked them to go around and each say their name, the name of the patient whose story they are acting out and a few words on what they are feeling at this moment or about the project in general. One by one, as they passed the phone around, each actor (2 men, 2 women) told me how honored they were to be part of this production, to be representing the brave patients who, by and large, don't have the strength to get out and publicly speak out about the illness themselves. I got all choked up listening as they all told me how genuinely grateful they were to be part of this production. How completely opposite what most of us patients feel, right? We feel like we are throw-aways, that society wants nothing to do with us. And here these actors were saying how honored they were to represent us publicly. Wow!

    Soon after the 45 minute performance, the director, Ivy, called me. Excited, she said it went very well, that a lot of people walked by, including whole groups, and that a good number stopped and paid attention, even if only for a short while. She was not sure how many people stayed and for how long. She, herself, was not able to pay attention to that, as she was videotaping. Several people came because they knew the actors and they stay a bit longer. Ivy interviewed some of the audience for their reactions. She said one boy, about 13 years old, came up afterwards and asked if he could donate some money to help ME/CFS. And one guy noticeably stayed for the whole show. (But left soon after, so she was not able to ask him any questions.)

    The actors handed out informational handouts when they were not in a scene, so passers-by got handouts even if they did not stop and watch.

    At tomorrow's performance, Ivy will pay closer attention to how many folks actually stick around and watch a whole scene or two (i.e. a full patient's story). That way we'll see if this is an effective mode of raising public awareness, or if we should work more towards getting the play into spaces where there is a captive audience, like a theater.

    Also, if any press come it would be tomorrow. We've reached out to -- and gotten some interest from -- local newspapers and radio stations. But press is tricky. Interest does not always translate into action. So time will tell. Same with if a good video can be made of the performance.

    Thanks again to the patients for sharing their stories with the world! They are having an impact!

    Rivka
    Rivka (at) ThatTakesOvaries (dot) org
     
  2. Dreambirdie

    Dreambirdie work in progress

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    Thanks Rivka. This is very touching. I am happy you shared it.

    AND.. I look forward to any videos that will be available to watch.
     
  3. RivkaRivka

    RivkaRivka Senior Member

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    thank you, dreambirdie!
     
  4. RivkaRivka

    RivkaRivka Senior Member

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    FOR IMMEDIATE RELEASE

    CONTACT:
    Rivka Solomon
    Rivka (at) ThatTakesOvaries (dot) org

    "Guerilla Theater" Performance About Chronic Fatigue Syndrome

    July 14, 2011 -- For the first time, there is now a play that dramatizes the real-life stories of disabled Americans stricken with the little-understood illness called chronic fatigue syndrome (ME/CFS). This play can be performed in a "guerilla street theater" type of dramatic performance, open to the public and passers-by, or in an indoor setting, such as a community center or theater, perhaps as a fundraiser for organizations conducting research into the cause, treatment and cure for ME/CFS.

    CFS, also known as myalgic encephalomyelitis or ME/CFS, is a disabling, sometimes fatal neuro-immune disease afflicting one million Americans and 17 million worldwide.

    The script, titled I REPRESENT: INVISIBLE NO MORE, is a collection of true stories from people living with ME/CFS (chronic fatigue syndrome), and available to local community leaders and/or professional theater directors to use with community volunteers or professional actors.

    Because the patients are either too sick to leave their homes or too sick to engage in public speaking ventures, the actors will represent them and share their poignant, sometimes funny narratives -- hence the name of the play, I REPRESENT. The subtitle, INVISIBLE NO MORE, reflects the fact that the voices of homebound Americans will be heard for the first time in a theater performance

    The public performances, when done as 'street theater,' where passers-by can stop and watch for as long as they want, offer the public a chance to hear what the lives of these disabled Americans are like.

    "ME/CFS is a devastating disability. Many patients spend 5, 10, 20 years in or near bed, too weak to work, go to school or have a social life. Being homebound renders them invisible to the general public, allowing for little public awareness about the illness and many misconceptions. We hope to change that." -- Playwright Rivka Solomon, herself homebound/bedridden for much of the past 21 years.

    In 2010, the National Institutes of Health allocated only $6 million to ME/CFS research. (http://report.nih.gov/rcdc/categories) The motivation for this play is triggered by that lack of funding, along with a ground-breaking 2009 research paper published in Science, linking the illness to a newly-discovered HIV-like retrovirus, XMRV. The study was conducted by the Whittemore Peterson Institute, working with the National Cancer Institute and the Cleveland Clinic. (http://www.sciencemag.org/content/326/5952/585.full?ijkey=GOrE1tiPbBKMo&keytype=ref&siteid=sci)

    For decades, the cause of this illness (an illness that is "invisible," like multiple sclerosis, lupus and early HIV retroviral infection) has remained elusive. Now finding a possible retroviral cause, XMRV, for ME/CFS is motivating patients to be more public.

    ME/CFS first gained national attention around the same time as the AIDS epidemic, in the early 1980s. But as HIV/AIDS groups were able to organize, protest and demand respect, attention and funding, ME/CFS patients, too weak to function, crawled to bed.

    Doctor Nancy Klimas, researcher and clinician at the University of Miami, recently stated in The New York Times that her ME/CFS patients are sicker than her HIV patients:

    "My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my CFS. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have HIV." (http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome)

    Although more than 4,000 peer-reviewed articles in medical journals have pointed to system-wide immune, neurological, endocrine, gastro-intestinal and cardiac abnormalities, a biologically-based diagnostic definition has eluded doctors. The result has been a catastrophic lack of care and ineffective (sometimes harmful) treatments. The disease occurs in people of all ages, from children to seniors, and also has occurred in cluster outbreaks from Nevada to New York.

    CONTACT: Rivka Solomon
    Rivka (at) ThatTakesOvaries (dot) org

    # # #
     
  5. Nielk

    Nielk

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    Thank you Rivka.
    It really is heartwarming knowing that this is being done for our behalf.
    All your work and everyone involved is very much appreciated.
    It would be great if we could see a video of it!
    We would be able to share it with others so that it could be viewed by many more people.
    We need people like you!

    Nielk
     
  6. ahimsa

    ahimsa Sick since 1990

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    Congratulations and thank you, Rivka! I wish I could be more eloquent but I'm starting to fade for the evening.

    (I've had a really bad few days. I'm better today but still wiped out -- I think that message I posted earlier today was my quota of thinking for the day!)
     
  7. Sushi

    Sushi Senior Member Albuquerque

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    :balloons:Great Thing Rivka!

    I am so impressed at how so many of us here are using our previously cultivated talents (or our newly developed talents) to bring awareness to the unaware and make us ghosts visible.

    Thank You! :victory:

    Sushi
     
  8. justinreilly

    justinreilly Senior Member

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    Thank you, Rivka and everyone involved with this production!

    Glad you have contacted the press. This is so important as you know. Can't guarantee they will come of course, but all we can do is ask.

    Yes, I am a sap, but the fact that the kid asked if he could donate to ME, Wow, that's awesome! Gives me some faith in humanity!

    All this is uplifting! Made my day. Pls keep it up.
     
  9. Gemini

    Gemini Senior Member

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    Outstanding! Great advocacy & awareness project, Rivka!

    Please post the link to the newspaper article covering the
    performance which is absolutely excellent!!!
     
  10. RivkaRivka

    RivkaRivka Senior Member

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    REPORT BACK FROM PERFORMANCE #2

    The performance today went well. Same time and place. Unfortunately, there were less people on campus today, so less passers-by. But the good news is that for this performance about 10-12 people came with lawn chairs and stayed and watched the whole show. These were friends of the actors and people who found out about it on FaceBook, and folks from the University theater program. A reporter from the same newspaper that already wrote about it came and stayed for the whole play and brought a photographer who took lots of photos. I hope we get to see them sometime. They will do another article that will come out next week. In total, Ivy, the director, made 110 informational flyers to pass out to passers-by, and they ran out over the two days of performances. A theater professor came and wants to consider doing this play this fall with his/her class.
     
  11. RivkaRivka

    RivkaRivka Senior Member

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  12. shannah

    shannah Senior Member

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    Great press Rivka. Congratulations.

    Thanks for the many creative ways you manage to bring awareness to our plight.
     
  13. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    awesome, Rivka, excellent work, and thanks also to the amazing actors!
     

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