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    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.

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Phoenix Rising and Me

Jody Smith remembers the early days of the Phoenix Rising forums - and explains why she's glad to be back...

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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[/quote]View the Post on the Blog
 
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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!
 
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 (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!!!!
 
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. :)
 
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.
 
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.
 
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. :)
 
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
 
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. :)
 
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.
 
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.:)