Phoenix Rising and Me

October 22, 2012

Jody SmithJody Smith remembers the early days of the Phoenix Rising forums – and explains why she’s glad to be back…

I don’t know exactly when I stumbled upon Phoenix Rising. It was during a period of years now shrouded in a CFS fog, when I was mostly awake in the middle of the night, sleeping through much of the day.

I spent time on the computer as my body and brain allowed, searching for any information that might help me find out what was so desperately wrong with me.

Many sites taunted me by being too difficult for my crippled brain to comprehend. But not Phoenix Rising. Cort Johnson has always had the ability to take information that is too medical, too scientific, for me and feed it to me in small bites.

My computer died about the same time that my ability to comprehend the written word withered. It was several years before I touched a computer again. It was a couple more before I was doing more than checking email.

I had started a website called Ncubator.ca – about my experience with CFS – in 2009. I contacted a few sites for links, and also because I was starving for any type of connection.

Cort Johnson had of course never heard of me but I remembered him. I remembered how his online presence had helped me through some of my worst and darkest years, with his face smiling benignly beside each article he’d written. I remembered feeling comforted.

I emailed Cort, who quickly asked me for an interview. I was immensely grateful.

I noticed he had started a forum, where nobody was posting but him. There were quite a few members but I had to assume they were too sick to post. So there was Cort trying to start threads, essentially having conversations with himself.

I popped in and started responding. For what seemed a long time, it was just Cort and me posting. But gradually other people began to express themselves. And in a fairly short time, the forums at Phoenix Rising went from being a one man show, to a Paw and Maw enterprise, to an enormous community.

Before the forums, I was very much alone. I was lucky to have my family with me, but the people I’d known before I became sick had all disappeared long ago. This was painful for me after having spent years deeply involved in my homeschooling group, my church and a website with 40 volunteer writers under me.

To be fair, a few people had been in touch early on when I was sick, but I was unable to return phone calls or have visitors. Still, this empty life was a real shocker and so different from what I’d been used to.

Being a part of the forums changed my life. Being welcomed and wanted helped to soothe the dread and fury I carried with me about being ignored and dismissed by my world. It helped to ease the fear that I could disappear completely and never be missed.

I spent about a year warming myself at the hearth of Phoenix Rising. As I look back a couple of years later, I realize that I stayed longer than I could afford to – but it was my home and I didn’t want to go.

Eventually I had to leave the forums though, because the part time work I’d found online in 2009 had gradually turned into more work and I was juggling full time hours of writing with hours every day on the forums.

It’s more than two years since I had to make the break. I have dropped in on a few occasions. Once I came by looking for advice for a sick friend. A year later I came back to post her eulogy when she passed away. I was overwhelmed by the warm enveloping response I received, after such a long absence. It made me feel homesick again.

It was nice to know that even after I had to go away my presence still mattered. That old fear, one that dogs so many of us, that we will vanish and not be missed … I do not experience that here. This has always felt like home.

 

Visit Jody’s website and blog at http://www.ncubator.ca and http://ncubator.ca/blogger

 

39 comments

{ 39 comments… read them below or add one }

Frickly October 22, 2012 at 11:18 am

Glad your back Jody. :)

Nielk October 22, 2012 at 11:37 am

Thanks Jody for this article…as well as so many articles written beautifully expressing my inner deep thoughts that I could never express myself.

The loneliness in this disease is so oppressive, isn't it? Even I who is very lucky to have family around me, feel this immense sadness in my loneliness. This forum definitely feeds my need for understanding and belonging.

Jody October 22, 2012 at 11:43 am
Frickly

Glad your back Jody. :)

It's nice to be home, Frickly. :)

Jody October 22, 2012 at 11:45 am
Nielk

Thanks Jody for this article…as well as so many articles written beautifully expressing my inner deep thoughts that I could never express myself.

The loneliness in this disease is so oppressive, isn't it? Even I who is very lucky to have family around me, feel this immense sadness in my loneliness. This forum definitely feeds my need for understanding and belonging.

Neilk,

I know what you mean. I have a very good life these days in many ways. Family life is better, more stable, me, Al and Jesse are getting healthier … But once in awhile the fact that I have no friends where I live smacks me in the face. And my reaction is always, "Whaaat?" How can this be?

But it is. And it's that way for alot of us, whatever our level of health, or finances or family togetherness.

Sushi October 22, 2012 at 11:53 am

Jody,

So great to see you around again!

Sushi

Wayne October 22, 2012 at 11:58 am

Hi Jody, it's heartwarming to see you posting here this morning. :thumbsup:

Enid October 22, 2012 at 12:12 pm

Glad to see you back Jody – it's been Dr Phoenix Rising for me for some time now (well we don't have the "physical" kind here in the UK).

Dreambirdie October 22, 2012 at 12:28 pm

Hello Jody. I am happy you're here again. I always enjoy your articles.

Welcome back. :hug:

Jody October 22, 2012 at 12:52 pm
Sushi

Jody,

So great to see you around again!

Sushi

Sushi,

Great to see you too. :)

Jody October 22, 2012 at 12:53 pm
Wayne

Hi Jody, it's heartwarming to see you posting here this morning. :thumbsup:

Wayne,

Been a long time. Thanks. :)

Jody October 22, 2012 at 12:54 pm
Enid

Glad to see you back Jody – it's been Dr Phoenix Rising for me for some time now (well we don't have the "physical" kind here in the UK).

Enid,

I know what you mean. Until my naturopath I was not helped in any respect by any other doctor. It was all figuring out bits and pieces I could find for myself.

Jody October 22, 2012 at 12:55 pm
Dreambirdie

Hello Jody. I am happy you're here again. I always enjoy your articles.

Welcome back. :hug:

DB,

Thanks, I appreciate it. :)

heapsreal October 22, 2012 at 1:17 pm

I think many years ago when PR first started that u were one of the first person to invite me as a friend. Wow, thousands of posts later, i think u can say i get alot out of PR. I think PR is a friendly place because of these ease to make friends, the broad subjects that are spoken about and because of great people like yourself Jody.

cheers!!!
Heapsreal.

Jody October 22, 2012 at 1:40 pm
heapsreal

I think many years ago when PR first started that u were one of the first person to invite me as a friend. Wow, thousands of posts later, i think u can say i get alot out of PR. I think PR is a friendly place because of these ease to make friends, the broad subjects that are spoken about and because of great people like yourself Jody.

cheers!!!
Heapsreal.

Heapsreal,

I remember when we met as well. It seems like such a long time ago. :)

There are alot of great people here. Like you. :)

adin October 22, 2012 at 4:01 pm

We haven't gotten to formally meet yet, but I'm glad you're here!

Great story!

Jody October 22, 2012 at 4:16 pm
adin

We haven't gotten to formally meet yet, but I'm glad you're here!

Great story!

Thanks Adin. Nice to meet you. :)

jimells October 22, 2012 at 7:11 pm

Hi Jody – thanks for your story. And thanks to Cort for starting the forum. Reading the stories of people who have managed to improve their lives in spite of the medical industry gives me a reason to keep fighting to find a real treatment.

If I really believed the only 'treatment' is to use drugs that I can't tolerate, I would've ended it all quite a while ago. Now I know there are treatments I can try that don't even require the permission of some gatekeeper, er, doctor. And some of those approachs have pretty good odds of actually helping

Kina October 22, 2012 at 7:39 pm

Hi Jody.

Welcome back. :)

Jody October 22, 2012 at 8:21 pm
jimells

Hi Jody – thanks for your story. And thanks to Cort for starting the forum. Reading the stories of people who have managed to improve their lives in spite of the medical industry gives me a reason to keep fighting to find a real treatment.

If I really believed the only 'treatment' is to use drugs that I can't tolerate, I would've ended it all quite a while ago. Now I know there are treatments I can try that don't even require the permission of some gatekeeper, er, doctor. And some of those approachs have pretty good odds of actually helping

jimells,

Yep, keep fighting. I would have been happy to have gotten treatment that worked from a doctor. But since that was not to be, it is nice to be able to explore options without needing the "gatekeeper's" approval. This is my life and it is up to me, no one else, to decide what actions to take or not take.

Jody October 22, 2012 at 8:21 pm
Kina

Hi Jody.

Welcome back. :)

Thanks Kina.

So nice to be remembered and welcomed.

Dainty October 22, 2012 at 10:52 pm

Good to see you again. :)

caledonia October 22, 2012 at 11:02 pm

Hey Jody,

Great to see you back! I remember you were the first person who welcomed me here and my first friend.

Caledonia

taniaaust1 October 22, 2012 at 11:54 pm

Welcome back :)

Nice heart felt article.

Sasha October 23, 2012 at 3:33 am

Hi Jody – great to see you here again! In a way, it's good to see people disappear from the forums as they get better because they're our fore-runners back into the world where we hope one day to follow, but that does't mean we don't think about them. Thanks for writing another thoughtful piece!

Jody October 23, 2012 at 10:31 am
Dainty

Good to see you again. :)

Dainty,

It's been awhile, hasn't it. Nice to see you too. :)

Jody October 23, 2012 at 10:32 am
caledonia

Hey Jody,

Great to see you back! I remember you were the first person who welcomed me here and my first friend.

Caledonia

Caledonia,

Good memory! That is going back awhile. Nice to be back. :)

Jody October 23, 2012 at 10:33 am
taniaaust1

Welcome back :)

Nice heart felt article.

Taniaaust1

I suspect many parts of my story are also other peoples' stories as well.

Thanks for the welcome. :)

Jody October 23, 2012 at 10:34 am
Sasha

Hi Jody – great to see you here again! In a way, it's good to see people disappear from the forums as they get better because they're our fore-runners back into the world where we hope one day to follow, but that does't mean we don't think about them. Thanks for writing another thoughtful piece!

Sasha,

What you say is true. I'm glad you didn't forget me. :) I never forgot any of you either.

August59 October 24, 2012 at 2:13 pm

August59 (Jerry)
It is a blessing to your face here again. You were always so supportive and positive in any advice given when it was really needed. I'm very glad that ur back and I always felt as if a part of PR went away when you did. I hope you can feel the great big hug that I am giving you now and look forward to your input on the forum

Missed you very much!!!!

Jody October 24, 2012 at 3:20 pm
August59

August59 (Jerry)
It is a blessing to your face here again. You were always so supportive and positive in any advice given when it was really needed. I'm very glad that ur back and I always felt as if a part of PR went away when you did. I hope you can feel the great big hug that I am giving you now and look forward to your input on the forum

Missed you very much!!!!

August,

Thank you so much. It's been wonderful to get such a warm response this week.

It's good to be back. :)

Marg October 24, 2012 at 4:57 pm
Jody

August,

Thank you so much. It's been wonderful to get such a warm response this week.

It's good to be back. :)

Marg October 24, 2012 at 5:00 pm

Hi Jody,

So glad to see you here. I remember you from when I first found PR. I knew I had hit the jackpot when I found it. I read your blog and enjoy that, glad to hear of your progress.

Jody October 24, 2012 at 5:08 pm
Marg

Hi Jody,

So glad to see you here. I remember you from when I first found PR. I knew I had hit the jackpot when I found it. I read your blog and enjoy that, glad to hear of your progress.

Marg,

Thanks for that. :) It is a great place. I'm hoping that we all will make great progress.

ixchelkali October 24, 2012 at 9:53 pm

Hi, Jody. Nice to see you here again. I remember you from those earliest days of the forum. Like you, I had been reading Cort's articles for quite a while. As I was first wading through the scientific papers on ME/CFS (or CFIDS, as I thought of it then) it was so helpful to have him translate them into plain English. After the forum started, I lurked for several months, reading but not posting. I think it was in the excitement following the Oct. 2009 publication of the XMRV study that I finally decided that I wanted to be part of the conversation.

Thanks for sharing your PR story.

Jody October 25, 2012 at 5:51 am
ixchelkali

Hi, Jody. Nice to see you here again. I remember you from those earliest days of the forum. Like you, I had been reading Cort's articles for quite a while. As I was first wading through the scientific papers on ME/CFS (or CFIDS, as I thought of it then) it was so helpful to have him translate them into plain English. After the forum started, I lurked for several months, reading but not posting. I think it was in the excitement following the Oct. 2009 publication of the XMRV study that I finally decided that I wanted to be part of the conversation.

Thanks for sharing your PR story.

ixchelkali,

It's hard to believe the XMRV thing hit just about three years ago now. The conversation has certainly grown in that time. :)

RestingInHim October 25, 2012 at 10:09 am

Hi Jody! It was so great to read your article. It took me back too. When I discovered the forums, there were more here than you and Cort, but it was fairly early on, before the forums exploded. Though I didn't become a member for many months, I found a home in the midst of the isolation of this illness. Even though I was blessed to continue in ministry and be with other people after becoming ill in 1993, I needed conversation and a place to share with others who understood…who GOT IT…because they were living with this too. You were one of the lights that shined in my dark days…always warm, always welcoming… humble and honest. No matter how long I stayed away through my better periods, I could come back when I hit dark days and find a welcome as though I had been logged in all along. As the forums grew…I became overwhelmed with all the people, probably because I was already keeping track of so many in ministry. But I would come back to this touch stone of home and hope again and again, always finding a welcome. Since my health took a major downturn in 2007 and I retired from the ministry I had worked in for 26 years, and though I don't often comment or share on the forums, I continue to be grateful for Cort and the lifeline of information I can find here any time. So…to log on and find you here again is a wonderful blessing! Thank you for helping to make this a home for me as it was for you!
resting still……

resting….still

Jody October 25, 2012 at 7:05 pm
RestingInHim

Hi Jody! It was so great to read your article. It took me back too. When I discovered the forums, there were more here than you and Cort, but it was fairly early on, before the forums exploded. Though I didn't become a member for many months, I found a home in the midst of the isolation of this illness. Even though I was blessed to continue in ministry and be with other people after becoming ill in 1993, I needed conversation and a place to share with others who understood…who GOT IT…because they were living with this too. You were one of the lights that shined in my dark days…always warm, always welcoming… humble and honest. No matter how long I stayed away through my better periods, I could come back when I hit dark days and find a welcome as though I had been logged in all along. As the forums grew…I became overwhelmed with all the people, probably because I was already keeping track of so many in ministry. But I would come back to this touch stone of home and hope again and again, always finding a welcome. Since my health took a major downturn in 2007 and I retired from the ministry I had worked in for 26 years, and though I don't often comment or share on the forums, I continue to be grateful for Cort and the lifeline of information I can find here any time. So…to log on and find you here again is a wonderful blessing! Thank you for helping to make this a home for me as it was for you!
resting still……

resting….still

RestingInHim,

It is a great place to be able to return to for refilling and regenerating, for seeing old friends and meeting new ones. I'm happy to have been part of that for you in the past. Here's to the future. :)

Creamcheese February 21, 2014 at 9:04 am

Would like to add to this post, as I am returning here to PRForum after a few years absence. Jody is one of the main contributors to helping me through the fog, shining her beacon of hope. During the time that I was gone from here, had grief issues after both my parents died. Having worked in healthcare, it was a gift to be able to care for them in there final years. Would not have wanted to be elsewhere. It was they, who helped with finances , seeing good doctors for disability triple attempts (as I was young, then) and gov't did not want to give me what would turn into years of assistance. Yes, I agree, that Jody also made me feel at home here. And sharing all the she learned and the possibilities that can manifest when we don't give up. Is a good feeling to touch base here; to know that others truly understand because at some level they have been there.

Jody February 21, 2014 at 6:08 pm
Creamcheese

Would like to add to this post, as I am returning here to PRForum after a few years absence. Jody is one of the main contributors to helping me through the fog, shining her beacon of hope. During the time that I was gone from here, had grief issues after both my parents died. Having worked in healthcare, it was a gift to be able to care for them in there final years. Would not have wanted to be elsewhere. It was they, who helped with finances , seeing good doctors for disability triple attempts (as I was young, then) and gov't did not want to give me what would turn into years of assistance. Yes, I agree, that Jody also made me feel at home here. And sharing all the she learned and the possibilities that can manifest when we don't give up. Is a good feeling to touch base here; to know that others truly understand because at some level they have been there.

Creamcheese,

I'm touched by your post. Thank you.

Your parents were fortunate to have you and your kindness. Welcome back.:)

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