Review: 65_RedRoses

March 28, 2010

As a child Eva Markvoort could not pronounce her illness: cystic fibrosis. Her mis-pronunciation gave birth to the monicker that became her online identity, her global calling card, and perhaps her most potent weapon in her fight to stay alive.

65_RedRoses is also the title of the documentary that Philip Lyall and Nimisha Mukerji co-directed about Eva in 2009. The film follows the 23 year old as she endures the stress of waiting for a double lung transplant. Beyond its unflinching examination of the horrors of cystic fibrosis, the film explores the emerging role of social media in building community and support groups among victims, who are kept physically isolated from each other for medical reasons. The filmmakers travel to the US to visit two of Eva’s online friends, each struggling in their own way. What emerges is a portrait of friendship, hope and a snapshot of the positive applications of social technology.

I went to film school with both directors, and have collaborated with them on other projects. Watching the film at the Vancouver Film Festival last fall was a deeply moving experience. I’m proud of what they accomplished with this film, and I’m inspired by their rigour and courage as filmmakers. But I can’t help but feel that the crucial storyteller, in a way the third director of the film, was Eva herself.

We learn from the doc that Eva once aspired to an acting career. Watching the film and looking at the self-portraiture on her world-famous blog, we can see the playful spark of a diva in Eva’s eyes. She waged her battle with poetry and in a profound sense, transformed her struggle into theatre. It seems to me that her love of performance gave her a vital buzz that energized her fight and allowed her to transcend the  issues of self-disclosure that might inhibit other subjects of medical documentaries. Her magnetic charisma drew people to her story. She had genuine star-wattage, combined with the media savvy to harness the narrative of her life.

With characteristic flair, Eva recently made headlines by posting a youtube video announcing her impending death. The self-consious drama and genuine emotional complexity of that moment encapsulated everything that her story has come to represent in the contemporary information-sharing landscape. Every one of us who elects to participate in social media projects a personally shaped narrative into the data cloud. Eva engaged with self-publishing at the highest stakes possible. In doing so she fashioned her avatar into a self-made champion of cystic fibrosis awareness and organ donation: a genuine heroine for people all around the world.

Eva died yesterday, but her digital identity lingers. 65_RedRoses’ pioneering engagement with traditional and social media ensures her legacy as a distinguished public figure. A Terry Fox for the internet age.

65_RedRoses returns to the CBC’s Passionate Eye on April 2nd.

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  1. Excellent post. She was such a beautiful girl, and as you say, definitely had the diva spark in her eyes. My heart goes out to all who knew her and were touched by her story. I love the image my mind creates of a personally shaped narrative being projected into the data cloud. May we all keep writing in her honour.

  2. Matt, thanks so much for writing this wonderful article (I only just stumbled on it today). As to be expected, your reflections on the film and Eva’s commitment to blogging were both eloquently phrased and carefully observed. She really was the third director of our film.

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