Trial By Error: Anil van der Zee’s New Video on Living with Severe ME

Discussion in 'General ME/CFS news' started by Grigor, May 14, 2024.

  1. Grigor

    Grigor Senior Member (Voting Rights)

    "Anil van der Zee and I first connected in 2016, when he invited me to Amsterdam to give a talk at a screening of Ryan Prior’s documentary about his own illness, Forgotten Plague. Anil was already home-bound from ME; he organized that event from his bed. We didn’t meet during that visit–he wasn’t able to have visitors. But I’ve been to Amsterdam many times since, and Anil and I have been able to get together in person a few times–but just for ten or fifteen minutes.

    Anil was a dancer before he got sick. Now he makes art through his images and words. I am constantly amazed at how active and engaged he manages to be with his phone as his instrument. Here is The Prison of M.E., a haunting video he posted for World ME Awareness Day on Sunday, May 12th (two days ago), about life as a severel patient. Below the video, I have posted the text of an online interview in which I asked Anil about why he made the film, what he’d like people to know about severe ME, and how being unable to use his body makes him feel part of himself has been amputated."
    Kalliope, Solstice, Effi and 27 others like this.
  2. Laurie P

    Laurie P Senior Member (Voting Rights)

    New England, USA
    Thank you, @Grigor. I'm so grateful that you use your extremely limited energy to do such outstanding advocacy work! :thumbup: :trophy@:heart:
  3. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    What impressed me was that in addition to the advocacy content, with a limited light palette and very limited room scape @Grigor you created something that was also visually compelling.
    Kalliope, AliceLily, Grigor and 18 others like this.
  4. wingate

    wingate Senior Member (Voting Rights)

    Thank you for making this video.
    Kalliope, EzzieD, AliceLily and 6 others like this.
  5. oldtimer

    oldtimer Senior Member (Voting Rights)

    Melbourne Australia
    Thank you for this compelling video. I was deeply affected by it.
    Kalliope, EzzieD, AliceLily and 6 others like this.

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