Jen Brea on Her Broken Batteries, Crashing and Unrest

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Jen in her interviews always makes me think. I thought this, from the Refinery interview - http://www.refinery29.com/2017/09/170256/unrest-movie-chronic-fatigue-syndrome-woman - was very interesting
Jennifer Brea: "The way I describe it is that I feel like I’m this battery that is broken and only charges 20%. As long as I stay within that 20%, I can function really well and do a lot of the things that I want to do in the day. It's different for everyone, where that metabolic line is. When I crash, all my systems can’t work. It's sudden, and I won't know that I have it until I start getting symptoms. It depends how bad it is, but oftentimes I'll just be completely immobilized.
This reminds me a lot of Julie Rehmeyer and her mold issues. Suddenly, very suddenly often, her body would just completely shut down. Sometimes she was paralzyed.

That doesn't happen to me. My "crashes" are not sudden - they're more like a slowly building fire - - usually hitting their peak the next day or the day after that in which I've done too much. When its gets bad, all systems - don't work as well - it's like a complete functional meltdown - with difficulty moving and thinking.

Fortunately, I've never gotten this bad:

"I won’t be able to lift my head or arms, sometimes my brain will shut down, and I won’t even know who I am or that I am. When I was really sick, I ended up bedridden for days, weeks, and months as a result of [miscalculating my own energy]. Everything shuts down, and every symptom in my body starts going crazy. The only thing that helps and will get me out of that state is rest."
I'm just in a lot of pain, I'm experiencing lots of symptoms but I wouldn't say that weakness is the main thing; it's there but it's more pain for me - every movement is painful .

The fact that Jen persisted despite the fear she must have experienced shows a) how courageous she is and b) demonstrates a remarkable commitment to get her story out and making a difference.

Then there's the remarkable Omar - who has been so supportive and who's been able to put their journey in the context of an adventure! What a wonderful way for him to approach this difficult situation.

We usually view ME/CFS as a horrible burden or something that is very wrong that has been foisted on us. We certainly often feel victimized by it - but an alternate perspective might be viewing it as this kind of weird, challenging adventure in which we learn how to be as whole and alive as possible even in difficulties it presents...

"This [disease] can be [an adventure], and we can face it together by treating it that way. Whether it's this journey into the film world or our journey together into the science, politics, and social justice of this. We still see life the same way we would have if it hadn't happened to us."
Look at Toni Bernhard. ME/CFS really tested her Buddhist practices but in the end they worked to relieve her, and she used them to assist others in learning how to manage their diseases as successfully as possible. Not everyone can write a book, obviously, but we can attempt to put ME/CFS in a different context than just being a horrible problem. Maybe an adventure in learning how to squeak out value, appreciation and love even while being denied so much (???)
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
This is beyond like, I need a "love" button. :)

Especially like the part about viewing the illness as an adventure, not a burden.
Yes - what a context. Such a better context...not easy to accomplish, for sure, but much better.
 

Abrin

Well-Known Member
We usually view ME/CFS as a horrible burden or something that is very wrong that has been foisted on us. We certainly often feel victimized by it - but an alternate perspective might be viewing it as this kind of weird, challenging adventure in which we learn how to be as whole and alive as possible even in difficulties it presents...
Thanks for this @Cort!
I really needed to hear this today, in my own personal life it was really great timing. :)
 

Not dead yet!

Well-Known Member
Actually I'm looking at the "release" locations and dates. And it looks like the "City of Medicine" Durham, NC has been completely missed. A major medical center north of here, Johns Hopkins, won't be graced with it either.

What about Dallas TX? Or Austin?

What about St. Louis?

What about New Orleans?

What about Atlanta, GA?

What about Miami?

What about Charleston?

What about Little Rock? (isn't a beloved President from there?)

What about Denver? Pretty sure I didn't see these in the list.

For that matter, what about an Amazon pre-order option?

I guess I'm getting frustrated with the hurry up and wait. I'd like to be able to give the movie as a gift, and also to go see it. It's worth the energy expenditure. Maybe they're getting pushback from movie theater owners, but they haven't said so. I feel like I've been waiting for this movie for a long time.

Is Phoenix a location? Because I didn't notice it.

Someplace in Oregon?

Those last two are states that license Naturopaths (ND's).
 

Abrin

Well-Known Member
Look at Toni Bernhard. ME/CFS really tested her Buddhist practices but in the end they worked to relieve her, and she used them to assist others in learning how to manage their diseases as successfully as possible. Not everyone can write a book, obviously, but we can attempt to put ME/CFS in a different context than just being a horrible problem.
As a complete side note, I love Toni Bernhard! I always re-listen to the two audiobooks of hers that I own when I am in the middle of a crash and it always makes me feel less alone.
 

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