• 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 (FM), 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.

Phoenix Rising YouTube Video Thread

Jody

Senior Member
Messages
4,636
Location
Canada
I started tearing up at that first picture - the girl staring out the window. It was sooo saddd. Somehow I had missed that Cinderkeys had written a song specifically for CFS and what a wonderful, strong song it is and what a wonderful voice she has and what a wonderful professional job you did Teejkay!..... (I can see how it took so long!)...Jody's sad picture really got to me in the middle of it and did many others. This and Laurels video are the most moving I've seen. Both brought me to tears. Thanks so much. I think this will hang around for a long time.

Cort,

I start tearing up every time about half way through. The phoenix superimposed on the woman's face somewhere in the middle of the video causes me to well up and ... rise up within. By the end of the video I have tears coursing freely down my face. And then I see your picture at the very end and each time, it causes me to smile through the tears. :Retro smile:
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
I know, Jody. I SO MUCH appreciate Cort and this forum, and all the effort he put into making it happen.

But it makes me weepy any way. I am such a marshmallow sometimes. :Retro tongue:
 

fds66

Senior Member
Messages
231
Wow - can't believe I've only just found this.

Wonderful video and wonderful song. Thank you everyone for all your hard work. It did bring tears to my eyes.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
We weren't expecting to make a tear-jerker. Thanks for your nice Reviews Cort, fds, Jody, Koan and All.

Hopefully this Phoenix Rising video will affect the masses and help get funding and support for ME/CFS.

:hug:

teej
 

Cort

Phoenix Rising Founder
When I saw Jody's face I just started blabbing - I don't know why - I don't want to know why - I just did. :)))

Well, you made a tearjerker teej and a very good one! You must have experience in this area?

Hey, check this out - we just got an easy way to share links with Facebook, Wordpress - all those types of sites. Look at the top of the page on the left below where it say Reply to Thread - you can share this baby immediately.

In the middle of that Jody's face seemed so solemn and expressive - really got me going.
 

jackie

Senior Member
Messages
591
i can't remember how to link ANYTHING (no matter how many times I'm told how to do it!)...but the video showed up on my FB newsfeed (since I'm a "fan" of wpi)...and all i had to do was "share" it with myself on my FB page....couldn't have been easier for a dope like me!

(AND I've had several responses! wow! just WOW!)

I wrote a little announcement about may12 awareness day approaching etc. ("stole" some informational text from r.e.s.c.i.n.d....bit of the history of why may12...will add that later as well as anything i can think of, as the date nears.) and it all will tie in for my little tiny stab at advocacy.

I put up info re me/cfs on the page about me, when i started my fb a few months ago (the "deal" i made with myself when i let my kids begin a page for me, was that it would always reflect my journey with me/cfs.) figured eventually somebody might take a look - for the sake of curiousity...and they have!

Teej, cort, everybody...i have a feeling that this video is going to be bigger than you realise. One of the "commenters" on my page (after watching the video) was that he had tried for years to mentally block out the pain...and in doing so nearly DIED three times in the past five years! this was written by a person i haven't spoken to in nearly 20 years...and had no idea of his situation. shocking!

thanks again...for the monumental efforts! jackie:cool:
 

Finch

Down With the Sickness
Messages
326
:tear:Yes - I checked, and it's the "Rise like a Phoenix" part that gets me each and every time!

I think that's the dream we all share.

Cort - you named this place so well!
 

Frickly

Senior Member
Messages
1,049
Location
Texas
I think it was the wheel chair and the sign saying this is our secret wish. I think that needs to go on billboard for CFS awareness.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
jackie wrote: Teej, cort, everybody...i have a feeling that this video is going to be bigger than you realise. One of the "commenters" on my page (after watching the video) was that he had tried for years to mentally block out the pain...and in doing so nearly DIED three times in the past five years! this was written by a person i haven't spoken to in nearly 20 years...and had no idea of his situation. shocking!

That is amazing jackie. How incredible.
 
Messages
38
I think it was the wheel chair and the sign saying this is our secret wish. I think that needs to go on billboard for CFS awareness.

That is one of my very favorite parts of the video. Exactly what I wanted to get across, and the image gives power to the words.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
That is one of my very favorite parts of the video. Exactly what I wanted to get across, and the image gives power to the words.

Yeah, that image really gets the point across. I also thought the line about if I wanted to, I could shake the yuppie flu--with the image of a man so seriously ill--was a powerful (and devastating) image as well.

ALL the images of people in various stages of CFS were essential for this story. Some of us are sicker, some of us are more functional, but in spite of the fact that we might "look fine," we are all struggling. We have all been shamed and marginalized for having this "fake" illness. And our story comes through so well with this video.

I've watched it 20 times already, and feel moved every time I do.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
Thanks for your thoughts. The gal in the wheelchair is me on a good day. It's funny because in the past I've joked that I'm the Poster Child for CFS.

Before I got that wheelchair I used to have to crawl from my inflatable bed on the floor to the bathroom and kitchen for days when I had pushed too much because my pain gets so intense in my legs and ankles I cannot bear my own weight. I inherited my grandmother's wheelchair when she died a few years ago and I've used it when needed ever since.

That wheelchair is a blessing but I hate being in so much pain I can't even stand or walk on my own two feet. I'm now trying very hard not to push through my symptoms which means I'm bedridden 95% of the time, and I use a cane when I walk anywhere but I haven't been needing the wheelchair much since I've stopped pushing myself like I once did. My goal is to try to stay out of it but it's nice to know it's there when I need it.