Phoenix Rising Snapshots: From Grassroots to Metropolis

October 30, 2012

Jody Smith

Jody Smith reflects on the growth of the Phoenix Rising forums, from a handful of members in 2009 to several thousand today…

There may have been other forums for people with ME/CFS back in 2009, but if there were, I didn’t know about them. Phoenix Rising’s forums, as far as I knew at that time, were unique. So when I stumbled upon this place I began to seriously hang around.

Forum posts from all sources were infrequent back then, maybe half a dozen in a day. As more members began to slowly find their way in, there were the occasional riotous days of (I’d estimate) perhaps two dozen posts by half a dozen people. This was plenty of fun, made that much sweeter by the sheer novelty of being able to talk to other people.

Typically, the day after one of these mad free-for-alls (by ME/CFS standards), the forums resembled the empty streets of a western ghost town. The only thing missing was the tumbleweed blowing down the main drag. Here, nothing was moving.

Eventually it occurred to me that with just a handful of regular posters, and with all of us at low ebb on the best of days, what I was seeing was the forums’ version of post-exertional malaise. Everyone was sapped and would not be appearing for another 24 to 48 hours.

This probably hasn’t been a common paradigm for a long time. By the time we had several hundred regular posters, even when whole clusters would drop out for a day or a week at a time from exhaustion, the intriguing scenario of ME/CFS naptime became history.

After a month or so, I asked Cort if we could have a forum that was just for small talk and social chitchat. He didn’t think such a forum would get any traffic but I kept asking. I couldn’t speak for anyone else, but I knew in the depths of my soul that I needed a community.

I needed a place where I could go after a bad day. Or after a good day. I needed some place to compare notes with my friends about what to do with family weirdness and loneliness. A place where I could vent and blow off steam, and share my fears. Where I knew I could find support, encouragement, sympathy and advice. I needed a place to tell stories and laugh at stupid jokes.

That place eventually took shape as the Community Lounge. It may have started as an empty hall with just me hanging around talking to myself, but it didn’t stay empty for long. People began to pour in.

We held birthday parties there and hosted joke threads. We wept. We yelled. We laid flat on the burnout bench. For those of us looking for that type of community, it nurtured a sense of belonging and eased the terror of having been for so long outside the camp.

So many of us feel disenfranchised, abandoned, ditched, by our “real” worlds. Our virtual community began to fill in the empty spots, and started the process of nourishing the long-starved need for human contact.

In many ways this is a vital part of what Phoenix Rising has been doing for the ME/CFS community. I look at how the place has grown from that early foundation and I am astonished.

Now, if a chronic can find their way to Phoenix Rising, they have found tools for survival of many types on many levels. For the newly ill who has no idea what is going on with them, or what they can do about it, this door opens onto medical information, scientific research, recommendations concerning these doctors, those protocols, this lifestyle change and that method of self-help.

When Phoenix Rising was still small, I always managed to greet the newbies. I remembered what it was like to feel faceless and invisible, to need help and responses and not get them. I was determined to prevent this happening to as many people as possible.

And of course, I did this because it was a thrill that never got old to meet someone new, to share and to communicate. Eventually there were so many newcomers every day, that I could no longer do this. And around that time I was finding my part-time freelancing work was all I could handle.

Phoenix Rising had moved beyond its early grassroots days of being a small town and it was becoming the booming metropolis we see today. We house individuals from every walk of life.

While it’s unfortunate for them, we are fortunate to have people who in their pre-ME/CFS existence were movers and shakers, versed in politics, media, public relations, and the law. We are home to people who, even with fragile brains, can still run rings around the average normal person in their understanding and ability to communicate and make changes from their beds and couches at the touch of a computer keyboard.

Mothers, fathers, nurturers of every stripe look out for their fellow ill comrades on these boards. And the bottom line, and to me the reason for this place to exist and to thrive: we are a refuge for the devastated, the silenced, the frail and vulnerable chronically ill with ME/CFS.

15 comments

{ 15 comments… read them below or add one }

jimells October 30, 2012 at 7:34 pm

Hi Jody, nice essay. This forum has certainly become a refuge for me. My first exposure to the internet was about 15 years ago. My initial impression was, miles and miles of crap – who needs it. Now my opinion is, miles and miles of crap, with endless opportunities to buy stuff.

Plus there's Phoenix Rising. :thumbsup:

Jody October 30, 2012 at 7:43 pm


jimells

Hi Jody, nice essay. This forum has certainly become a refuge for me. My first exposure to the internet was about 15 years ago. My initial impression was, miles and miles of crap – who needs it. Now my opinion is, miles and miles of crap, with endless opportunities to buy stuff.

Plus there's Phoenix Rising. :thumbsup:

LOL

That seems to sum it up pretty well, jimells. :)

Enid October 31, 2012 at 8:08 am

Just lovely to see your happy smiling face Jody – very many years ago I heard of Cort searching, attending the real research meetings (Iime here in the UK of world specialists) and his singular dedication to unravelling ME. And Phoenix Rising is unique for all you say – members brought together – many specialists in the sciences or seeking advice, advocacy etc. Great chap that Cort !.

Nielk October 31, 2012 at 8:59 am

Jody,

You were one of the first ones to greet me here. I never forgot how good that felt. I try to return the favor as much as I can by greeting newcomers here.

ballard October 31, 2012 at 9:14 am

Hi Jody,
Phoenix Rising means a lot to me, too. Love your essay.
Sally

Jody October 31, 2012 at 12:01 pm


Enid

Just lovely to see your happy smiling face Jody – very many years ago I heard of Cort searching, attending the real research meetings (Iime here in the UK of world specialists) and his singular dedication to unravelling ME. And Phoenix Rising is unique for all you say – members brought together – many specialists in the sciences or seeking advice, advocacy etc. Great chap that Cort !.

Hi Enid

It's great to see the fruit of things begun years before. Phoenix Rising is still really young, but you can see the expansion and growth continuing to enlarge.

Jody October 31, 2012 at 12:03 pm


Nielk

Jody,

You were one of the first ones to greet me here. I never forgot how good that felt. I try to return the favor as much as I can by greeting newcomers here.

Nielk,

Seems like it was yesterday in some ways. And in other ways … :)

I'm glad that you have been helping to make the newbies welcome. I won't ever forget what that was like, to be new, unknown and feeling lost. And how little it takes sometimes to change that for someone and make a huge difference for them.

Jody October 31, 2012 at 12:05 pm


ballard

Hi Jody,
Phoenix Rising means a lot to me, too. Love your essay.
Sally

Hi Sally

Thanks. :)

I'm glad you've found this place and are benefitting from it.

liverock November 1, 2012 at 1:12 pm

Hello Jody!

Nice to hear you remembering the early days and the 'stupid jokes'. ( BTW I'm up to lifting a 200lb potato sack these days).

Herws the latest:
Many CFS sufferers cant drink a single glass of wine at night otherwise they would have to gert up several times a night to go to the bathroom.
A compassionate Californian vintrner in the NapaValley area, which primarily produce Pinot Blanc, Pinot Noir, and Pinot Grigio wines, has developed a new hybrid grape that acts as an anti-diuretic which will help-solve the problem.

It is expected to reduce the number of trips CFS people have to make to the bathroom during the night.

The new wine will be marketed as

PINO MORE

I HEARD IT THROUGH THE GRAPEVINE!!

Keith

Jody November 1, 2012 at 5:34 pm


liverock

Hello Jody!

Nice to hear you remembering the early days and the 'stupid jokes'. ( BTW I'm up to lifting a 200lb potato sack these days).

Herws the latest:
Many CFS sufferers cant drink a single glass of wine at night otherwise they would have to gert up several times a night to go to the bathroom.
A compassionate Californian vintrner in the NapaValley area, which primarily produce Pinot Blanc, Pinot Noir, and Pinot Grigio wines, has developed a new hybrid grape that acts as an anti-diuretic which will help-solve the problem.

It is expected to reduce the number of trips CFS people have to make to the bathroom during the night.

The new wine will be marketed as

PINO MORE

I HEARD IT THROUGH THE GRAPEVINE!!

Keith

Liverock,

I'm glad you finally worked up to heavier potato sacks. I thought that would never happen.

I've missed the dumb jokes. Looks like you've been keeping them coming. Well done. :)

Sushi November 1, 2012 at 7:03 pm


Jody

Liverock,

I'm glad you finally worked up to heavier potato sacks. I thought that would never happen.

I've missed the dumb jokes. Looks like you've been keeping them coming. Well done. :)

Jody,

Speaking of the good old stupid jokes (and the really wild and hilarious threads! :D ) I miss those too.

I'd like to see us living a little more on the edge here re: wild, stupid humor. Logging onto Phoenix Rising in the morning started the day with rolling on the floor laughter.

Remember???

I couldn't wait for the next post. We have plenty of crazy-smart people here to carry it off. :rofl:

And there was a whole alternate world on the burn-out bench….

Sushi

Jody November 1, 2012 at 9:47 pm


Sushi

Jody,

Speaking of the good old stupid jokes (and the really wild and hilarious threads! :D ) I miss those too.

I'd like to see us living a little more on the edge here re: wild, stupid humor. Logging onto Phoenix Rising in the morning started the day with rolling on the floor laughter.

Remember???

I couldn't wait for the next post. We have plenty of crazy-smart people here to carry it off. :rofl:

And there was a whole alternate world on the burn-out bench….

Sushi

I remember those threads. :) They were often the highlight of my day. And what great scope for mania and creativity.

Then when we wore ourselves out being hilarious lunatics, … we would hit the burnout bench. :D

GcMAF Australia November 1, 2012 at 11:46 pm

There are some great people here> well fantastic is a better word.
sometimes i feel humbled. every day i try to help some one in some way
sorry i missed the early humour.

Jody November 2, 2012 at 7:06 am


GcMAF Australia

There are some great people here> well fantastic is a better word.
sometimes i feel humbled. every day i try to help some one in some way
sorry i missed the early humour.

Hi GcMAF Australia,

There are some terrific people here.

And the great thing about humour is, though it may disappear for awhile, it has a way of … coming back. ;)

liverock November 2, 2012 at 8:53 am


GcMAF Australia

There are some great people here> well fantastic is a better word.
sometimes i feel humbled. every day i try to help some one in some way
sorry i missed the early humour.

GcMAF Australia
There are some great people here> well fantastic is a better word.
sometimes i feel humbled. every day i try to help some one in some way
sorry i missed the early humour.

You can still acess all the old jokes(and some new ones), in the Community Lounge,Joke of the Day section.

http://forums.phoenixrising.me/index.php?threads/joke-of-the-day.574/

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