We have arrived, folks!
I often look to TED Talks for inspiration and post them here on my blog's Weekly Inspiration feature. I have discovered all kinds of TED Talks that feel relevant to me, no matter the subject matter or speaker. But now, ME/CFS patients all over the world have our own voice in the TED Talk world, Jen Brea. And what a talk it is! My husband and I were both in tears by the end of Jen's articulate and moving talk, as were much of her audience.
Jen Brea is a severely affected ME/CFS patient who created (mostly from her bed) a fabulous new documentary about ME/CFS called Unrest (it was previously titled Canary in a Coal Mine). It is premiering this month at the Sundance Film Festival!
Jen's TED Talk is all about her own personal experiences with ME/CFS, the difficulty in getting an accurate diagnosis, and the experiences & plight of all ME/CFS patients. Check it out:
Watch the audience in this talk. Many of them are in tears (as we were) and they gave her a standing (silent) ovation. And this is an audience of healthy non-ME/CFS people! This talk can help tremendously to spread the word and build awareness about how devastating ME/CFS is and how desperately more research is needed.
And for us, the audience of those who also have ME/CFS, Jen's talk feels intimate and personal - she is telling OUR story to the world. Watching it, I felt deeply moved and understood. When she mentions how she found others like herself online, tears came to my eyes - I know that feeling.
I rarely even mention ME/CFS on my main Facebook page, where I interact with family & close friends, but I plan to post this talk. She explains this disease better than I can.
I can't wait to see the documentary!
Today's inspiration is feeling understood and spreading the word - thank you, Jen!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
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