Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Somehow that photo of Jen sitting in her powerchair, alone on that stage is very moving. And her husband's account of what she had to do to get there just brings me to tears.
Jen and I are both fully crashed
JaimeS said:And sorry, my cognitive fog is showing -- yes, @@Sasha let's start a thread on brainstorming how to promote the talk!
That's pretty nice of Ted talks if they allow you to control when the speech is postedwe have nonetheless been talking about the best and most strategic time to release the video,
I don’t have a best day of my life (there are many). But I sure as hell have a worst day. And it’s not the day I acquired my illness. The worst day of my life happened 265 days later. At the Cleveland Clinic. In the office of a renowned Neurologist. A distinguished man who carried himself like my dad. The entire day felt like a trick. I had gone home to the Cleveland area for the holidays. My parents and I thought a visit to this doctor couldn’t hurt. We could not have been more wrong. It hurt the worst. He told me directly that I was faking my illness. And for a moment, perhaps because he looked like my dad, my parents believed him. I tried to believe him too.
I could tell you the specifics of the day, but those specifics don’t matter. What does matter is someone named Jennifer Brea exists in the world, and she is telling this all too frequent story through the lens of a documentary called ‘Canary in a Coal Mine’. Perhaps she is telling your story too:
That's pretty nice of Ted talks if they allow you to control when the speech is posted
Dear friends,
Last week, at the TEDSummit in Banff, Canada, I gave the first TED talk about myalgic encephalomyelitis (ME), the disease I have been battling for the last five years.
Memorizing a 2600 word, sixteen minute talk taxed my brain in ways I did not imagine was possible. I had to pull out every single trick I have just to get on stage. During the talk, more than once I ran into a brick wall where there was nothing but blank – no words, no thoughts. But everyone stood and silently cheered and sent up love and support when I stumbled. And I made it! To the end! It was hard because the old me, the me that I was and still am, wants to nail it, wants everything to be flawless. And I realized on stage that it's OK to let what is broken be broken. That it's more important to be true.
I may never understand exactly what alchemy happened in that room. The support has been incredible, overwhelming, and has given me more hope than I have ever had since the day I first got sick that we can change the conversation. And with visibility and recognition I believe will come the care and research that millions have been waiting for, for decades.
The success of the talk has stepped up the timeline for our outreach campaign. We had hoped to bring on professional public relations and strategic support after the documentary film's festival premiere in 2017. However, this fall when the talk goes live, it has the potential to reach millions around the world in dozens of languages. We are already receiving media inquiries; offers of partnership and support that our tiny team just does not have the capacity to absorb. I have been told by many who have spoken before at TED that we will be flooded with thousands of emails.
I need your help to take full advantage of this unique moment. Help us grow our team. Please consider making a donation today.