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.