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ME/CFS: A disease at war with itself
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Phoenix Rising and Me

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Oct 22, 2012.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    [​IMG]
    Jody 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[/quote]View the Post on the Blog
    peggy-sue, Creamcheese, allyb and 5 others like this.
  2. Frickly

    Frickly Senior Member

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    Glad your back Jody. :)
  3. Nielk

    Nielk

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    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.
    merylg and L'engle like this.
  4. Jody

    Jody Senior Member

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

    Jody Senior Member

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    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.
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Jody,

    So great to see you around again!

    Sushi
  7. Wayne

    Wayne Senior Member

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

    Enid Senior Member

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    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).
  9. Dreambirdie

    Dreambirdie work in progress

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

    Welcome back. :hug:
  10. Jody

    Jody Senior Member

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    Sushi,

    Great to see you too. :)
  11. Jody

    Jody Senior Member

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    Wayne,

    Been a long time. Thanks. :)
  12. Jody

    Jody Senior Member

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    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.
  13. Jody

    Jody Senior Member

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    DB,

    Thanks, I appreciate it. :)
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    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.
  15. Jody

    Jody Senior Member

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    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. :)
  16. adin

    adin Administrator

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

    Great story!
  17. Jody

    Jody Senior Member

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    Thanks Adin. Nice to meet you. :)
  18. jimells

    jimells Senior Member

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    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
  19. Kina

    Kina Moderation Team Lead

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    Hi Jody.

    Welcome back. :)
  20. Jody

    Jody Senior Member

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    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.

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