• 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.

    To become a member, simply click the Register button at the top right.

Jen Brea giving TED talk on 27 June

Sushi

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
https://www.facebook.com/wasow
Omar Wasow in Banff, Alberta.
20 hrs ·
After months of writing, revising, memorizing and rehearsing, the big day arrived: Jen's talk at the TEDSummit in Banff, Canada. It was not an auspicious morning. I woke too early at about 6:30am to find Jen feeling terrible and desperately needing electrolytes, extra salt, aspirin and, ultimately, a house call from a doctor to provide an intravenous saline drip. I scrambled and, with the amazing support of the TED staff, was able to get it all. By 10am she'd perked up a bit but was still not feeling great. We made it over to the theater and she began the last bit of prepping. By about 30 minutes before showtime, we were sitting in a pitch-black room with the TV off to try and keep her from being overstimulated by light or sound.

By 5 minutes before showtime, we were standing off-stage. She was cool as a cucumber but I was all nerves and butterflies. Finally, Tom Rielly offered a lovely introduction that encouraged folks not to clap so as to avoid triggering Jen's sound sensitivity. She then powered out to the middle of the stage and I nearly cried from the rush of emotion.

For the first seven minutes or so, everything went as planned. Through words, images and short video clips, Jen conveyed the many personal and political challenges confronted by those with her illness. As the talk progressed, though, she began to show signs of the mental fatigue that plagues people with ME/CFS. As someone who loves her to pieces, it was hard to watch. But, knowing I'd seen her fight through worse, I never lost faith.

A central challenge of Jen's illness is that most people never see the toll it takes. By being on stage, though, and struggling to speak she embodied those challenges more viscerally than any words ever could. As Jen wrote, “I ran into a brick wall about five times during the talk when there was just 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.”

At the end of the talk, the entire room was on their feet and waving their hands in the American Sign Language version of a standing ovation.


 
Old Bones

Old Bones

Senior Member
Messages
808
Sushi said:
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.
Click to expand...

@Sushi I, too, was unprepared for the emotional impact of news regarding Jen's TED talk. I read Omar's Facebook post out loud to my husband. The tears were streaming down my face. I had to stop several times to compose myself before continuing. Good thing my husband is a gentle and sensitive soul.
 
JaimeS

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Sasha said:
Interesting!

Do you think we should start a new "How can we promote Jen Brea's TED talk?" thread?

Presumably it will go bigger if it has velocity, and will have more velocity if we've got our act together ahead of time?

@JenB, @JaimeS, do you know when we can expect the video link?
Click to expand...

Jen and I are both fully crashed -- her from the talk, and me from the NIH RFI -- but we have nonetheless been talking about the best and most strategic time to release the video, given what else #MEAction is doing. We want to maintain the excitement and forward momentum, but we also recognize that releasing information in a more planned manner creates a closely-knit narrative that the media can follow and use to make a bigger story, and the biggest possible splash.

It would be great to have some advance notice around here so that people can know to show up and tweet and re-tweet and like on Facebook and so on... of course we want that vid to be everywhere. I'm thinking that I will write an article a bit before it's to be released to give everyone advance notice.

-J
 
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Someone who was obviously impressed by Jen's talk...

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:
Click to expand...

https://medium.com/@eejackson/women-vs-hysteria-no-more-678b2f8f1193#.g8fnak5mg
 
Old Bones

Old Bones

Senior Member
Messages
808
Posted on-line today:

http://www.parkrecord.com/opinion/ci_30081217/orr-global-campfire

Although the description of "a version of chronic fatigue syndrome" isn't noteworthy, and probably doesn't capture the intended message, the fact that Jen's talk was the first of only two this attendee described in her article further demonstrates the impact it had, and still has, several days after the fact.

"This week I have been in Banff at a kind of summer camp I could've never imagined until now. Sixty countries represented first by 350 people for two days and then joined by another 400 for the next five days. TED Summit in Banff allowed for us to slow down and engage our brains in an international setting while looking inward and outward and all around, altogether.

But, as you would expect from any TED event, the main attraction was the speakers. With topics ranging from orphan diseases . . .

There was a young woman who appeared in a wheelchair to speak about her orphan disease that compromised her healthy life just five years ago, in her late twenties, after she was newly married. Jen Brea has a version of chronic fatigue syndrome, which was initially diagnosed as a kind of psychosomatic illness. There are days, weeks, months, when she cannot leave home. Coming to the conference to speak came at great personal cost. Before she took the stage, host Tom Reilly told us that loud noises could be jarring for her and even though we might feel like clapping (as a rule we give great audience) we needed instead to clap using American Sign Language which translates to a kind of jazz hands, high above your head. When Jen's talk concluded, we stood and silently waved our hands for minutes while she softly teared up... and so did we."
 
Last edited:
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Newsletter received today...
http://us2.campaign-archive2.com/?u=908f2aeffeb0c0cea673894bf&id=f974588a9c&e=f8b570ebaa

Extract...
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.
Click to expand...
 
You must log in or register to reply here.