This is Jen Brea after a 12 hour photo shoot for her film, Canary In A Coal Mine. I chose this picture of Jen because I’ve felt that way too. Every ME/CFS patients has felt this way: unable to stand, to lift your head off the floor, to speak. The triggers are different. Some patients might fall into that place after cooking a meal or driving the kids to school or using the computer for a few hours. It’s different for all of us. But we share this common experience that cannot be conveyed by such an inadequate word as “illness,” and that’s why the Canary film is important.
News of the film has spread quickly in the ME/CFS community: a Harvard PhD student disabled by ME/CFS is documenting her experience and the story of this disease through a narrative documentary film. And in my opinion, that is one of the strengths of the project: the storytelling. The visuals from this film are beautiful, and showcase the talents of Kiran Chitanvis. But through all the videos and blog posts, I think it is the story that draws us in.
Brea and Chitanvis created a Kickstarter campaign for the film. The original goal was to raise $50,000 in 30 days – just a quarter of the film’s $200,000 budget. There are a number of factors that define a “good” Kickstarter campaign: materials that show the project will be done professionally; excellent rewards; and publicity beyond Kickstarter that brings new people to the campaign. Brea is doing it all. The videos, stills, website and narrative released so far are very professionally done. The rewards are great, including behind the scenes access, tickets to the premiere, time with Howard Bloom, or a one-hour shoot of your own story. And through connections and an unbelievable amount of promotional work, the publicity has been greater than I’ve seen for any other ME/CFS creative project.
In just over three days, the $50,000 Kickstarter goal was met. Brea and Chitanvis decided to go big: they stretched the goal to the $200,000 needed for the film AND set a new goal of getting 6,509 people to fund it, which would make it the Kickstarted documentary with the most backers. As of today, with twenty-two days to go, they’ve raised $91,381 from 969 backers.
The attention paid to publicity is really significant. The film’s story has been covered by ABC News and on the TED blog, and many other outlets. In my opinion, this sets Canary apart from other projects. The patient community can’t fund this project by ourselves. In order to truly tell our story to the people who need to hear it – the people who know nothing (or nothing good) about ME/CFS – the film has to reach beyond the ME/CFS community. Brea and Chitvanis are doing that from the start, and support for the Kickstarter from outside our community will help the film ultimately reach that outside audience as well.
And this brings us back to storytelling. What makes people want to support this film is the intimate connection with Brea and others featured in it. It’s the story that pulls you in, and the story that makes you want to do something to help. If that’s true of the Kickstarter, it can be true of the film. And that could be a defining moment. We’ve longed for and dreamed of widespread public attention to the realities of having ME/CFS. Canary In A Coal Mine could deliver.
The film comes at a critical moment in ME/CFS history. Production will begin early next year, and the target completion date is December 2015. Simultaneously, the advocacy community is laboring to make progress across multiple political and scientific fronts. Most notably, the Institute of Medicine is scheduled to release their new clinical case definition of ME/CFS in March of 2015. I would like to believe that the galvanization of our movement is at hand: that our story will be HEARD and SEEN. I would like to believe that change is coming.