Monday, November 18, 2013

Canary in a Coal Mine


I have, of late, been deeply compelled by the story of Jennifer Brea, a young woman who went to lunch with friends one day and when the check came, she found she couldn't form the letters to sign her name. Soon her muscles were so weak she could not get out of bed, and an array of neurological symptoms came on as well. Eventually, Brea was diagnosed with myalgic encephalomyelitis (ME), a devastating disease that too many doctors have never heard of. Initially patronized, dismissed and told that her symptoms were a form of "hysteria," she got to wondering how people without her education and privileges—Princeton undergrad, Harvard Ph.D. candidate in government, wife of BlackPlanet.com social media whiz kid Omar Wasow—fared in the face of ME, all of them likely to be told their debilitating symptoms were all in their heads. Now Jennifer Brea is making a film about ME, to educate others about this little understood disease. She's raising money for her documentary, Canary in a Coal Mine, through Kickstarter, so go here and donate even a dollar if you can. 

One part of Jennifer Brea's story stopped me cold—her description of how as the disease progressed, her brain fell silent. There was no thought narrative running through, no stream of consciousness based in language, just images and blankness where her internal monologue had been.

I went in and out of periods where I would be totally lucid, I could understand everything anyone was saying to me, but became completely unable to think in any language. It was a little like being a dog. I could understand speech, and I could conceive of things in general impressions, and pictures, but there was no monologue in my head...

I think in some ways it was actually a blessing, because I could not be afraid of what was happening to me. Something I’ve learned is that in order to experience fear, you have to be able to project the future, and for that you need language. You need the future tense. You might even need the past tense. I was living in the present, and that was all that there was.

That insight that you need language to feel fear—more specifically, you need the future tense, and maybe also the past tense—is just so kick-in-the-gut powerful to me. I wonder if this understanding helps explain Brea's grit and determination to get up and do what many try to tell her is impossible? The very least I can do is help to spread the word.

You can read more about Jennifer Brea in her TED Fellow Q&A here. And you can learn more about her film by clicking on the trailer below.


14 comments:

  1. Thank you so much for this, I am sure that my friend has MD but has been diagnosed with everything BUT! This IS an important film!

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    1. Linda Sue, ME is so widely misdiagnosed. Maybe your friend can help guide her doctor to the tests to determine whether she does in fact have ME. Apparently the information is online.

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  2. Oh I had no idea, this is a small world. Omar is actually a friend of mine, actually my first boss. I was his intern at New York Online, his first start up. Shit. Heading to Facebook :(

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    1. Miss A , it is truly a small world. I was first drawn to this story through Jennifer and Omar's love story actually. I wondered what it must be like to find the love of your life and almost at once have them struck down by an illness that doesn't go away.

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  3. Wow -- that's intense. I tell you what -- there's just no telling what the world will bring to you, and the whole notion of living each day to the fullest is really, probably, the only way to live and stay sane. Too bad it's near impossible --

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    1. Elizabeth, there is no telling, and yet we hope, as if hoping can make it so. I play with the notion sometimes that we are directing our own little life movies with our thoughts, even choosing our major challenges, and that reality is somewhat malleable, but of course, there is the whole soup of everyone else's thoughts to contend with, too. I know. I sound certifiable. I think it's part of hoping that everything will turn out all right in the end. Like that movie, the Exotic Marigold Hotel (is that the name?) where one character says, "Everything will turn out all right in the end, so if everything is not all right, then it is not yet the end."

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  4. Interesting! I have never heard of either this film or this condition. I'm not sure about her assertion that you need language and a sense of the future to feel fear -- I think dogs feel fear, for example, even though they may not be able to conceive of much beyond the NOW. (Who knows what dogs think about, really?) But in any case it sounds like an interesting movie.

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    1. Steve, I wondered about the dog reference, too, but it think in that part of her quote she was making a reference less to language being fear-based and more to the idea that dogs can understand our verbal cues fully yet they don't share our way of communicating or even thinking. As far as we know! Still, the whole idea of fear being language based is very compelling to me, since whenever I am fearful, i have usually created an entire story about what MIGHT happen, I have colored in all the details with language, and it so often does me in, the incessant story, story, story in my head. I fantasize that it would be a relief to escape that noisy brain of mine for a while, but of course, the way it happened for Jennifer Brea is devastating. Still, maybe I can learn something from that experience she describes: Maybe I can release the stories and just be. That's my goal anyway. I'm so far away from it still.

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  5. I was struck by that part of her story as well. It comforts me somewhat to know that there are people out there doing such wonderful things, surely this documentary will help many. Thanks for bringing exposure to this story.

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    1. Vesuvius, I didn't even use the term chronic fatigue syndrome in my post, which is the umbrella term under which ME sufferers are often grouped. I think the term is so reductive of the actual experience, so abdicating responsibility to actually treat the patient. Thanks for allowing my mini rant!

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  6. Wow. I hadn't heard of this. Thank you for sharing. The nerd in me is about to go and read all about it.

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