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Thread: "Driving people away" - who, why, and does it matter?

  1. #46
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    Quote Originally Posted by flerc View Post
    Did Pooka1 attack you as she did with hundreds of members here until they left the forum? I only will believe that if I you quote it.
    At the time I first joined (not too long after my son's VBS in 2004), I honestly don't know if Sharon was even a member here.
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  2. #47
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    Quote Originally Posted by flerc View Post
    Did Pooka1 attack you as she did with hundreds of members here until they left the forum? I only will believe that if I you quote it.
    And I'm not sure why it would even matter with regard to the point I was trying to make.
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  3. #48
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    Quote Originally Posted by hdugger View Post
    Maria,

    I understand your point, but, as I said in the last post, I don't think even you would have survived the greeting in question. Nor would I. To me, that's a problem

    Here's what I'd suggest, instead, as a way of greeting people for whom you are not certain about the veracity of what they're saying.

    First, *greet* them. Don't frisk them at the door. Welcome them the way you'd welcome anyone else.

    If they make an obvious misstatement (as one of the posters did about surgical risk) correct it with facts.

    If they go way beyond their own experience to suggest that such and such is guaranteed to work for everyone, correct them again with facts.

    But, unless they're doing that - unless they're boldly proclaiming that such and such is true for everyone, then they're just trying to share their own experience and you treat them like anyone else trying to share their own experience. If what they say varies with what you know, then you (gently) correct. But you don't make them feel as if they've just wandered into the worst bar in town.

    What concerned me, particularly in one of the cases, was that the claim was really not all that bold (the child still had a significant curve after CLEAR treatment), AND the child had another medical problem (I believe it was diabetes) AND the parent seemed utterly convinced that surgery (which was likely in the cards for her kid, becuase the curve was sitll significant) was going to kill her child. I do not find such a participant to be "The Sworn Enemy of Truth." I find such a participant to be exactly the kind of person you want to hold on to because she *needs* support. Because she has a child with multiple problems who was likely going to require a surgery that she believed would kill her. The whole thing just kind of broke my heart. Would it *not* have been possible to more gently greet that woman so that she could, possibly, have been helped? Was it really necessary to drive her back to the place where people were telling her that surgery would kill her child?

    Anyway, that was my concern, in that case. People were so concerned with minimizing the (I believe) small risk to this forum posed by the woman's misconceptions, that they ended up exposing her kid to much more serious risks.One can be faithful to the truth and still find a way to support someone who does not have as clear an understanding of scoliosis. That is all I was saying, in that case.
    Fair enough, HD.

    My personal opinion of CLEAR aside, you are correct to point out that there are always exceptions where a particular method might be wrong for most, but be the 'lesser of the evils' in an exceptional case.

    And I always say that when choosing a treatment method for scoliosis, we are all just trying to choose the lesser of the evils.
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  4. #49
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    Quote Originally Posted by mariaf View Post
    What kept me here was this. I *almost* missed finding out about VBS for my son. It was by pure chance that I read about it. I didn't want another parent to be in the dark and not know about all of their options, in case VBS was a good fit for their child.
    Yes, I completely understand that. And I'm sorry to hear you had that experience. As an ex-forum moderator, I never like to hear those kinds of stories, although I know that they are (unfortunately) common.

    Likewise, I continue to participate here through some friction for the same reason. Because I think some things are important to share, even if sharing them isn't necessarily the most pleasant thing I've ever done.

    But, I don't expect that you and I are the most common case. I think most people are coming here just to share their stories and get support. And those people, through long experience, will leave if you give them the impression that they're not welcome. A support forum is not a support forum, simply, if it's attacking and not supporting you. So, I don't expect that *most* people would stay on through such a greeting, even though you or I would.

  5. #50
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    Quote Originally Posted by mariaf View Post

    My personal opinion of CLEAR aside, you are correct to point out that there are always exceptions where a particular method might be wrong for most, but be the 'lesser of the evils' in an exceptional case.
    I wasn't actually saying (or thinking at the time) that it was the lesser of two evils for this patient. I felt/feel that she needed to get to a real doctor. But I felt that the path to a real doctor ran through her being greeted here as a parent needing support and not some maybe-plant who needed to be frisked at the door. If she'd been welcomed, in the same way that every other participant is welcomed, I think she could have moved on to the treatment (I suspected) she needed. But, without that support, the only place she had to go to was the one that was telling her that surgery would kill her child.

  6. #51
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    Quote Originally Posted by mariaf View Post
    At the time I first joined (not too long after my son's VBS in 2004), I honestly don't know if Sharon was even a member here.
    I was not. I think I joined at the beginning of 2008.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #52
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    What kind of forum may allow 6 years of your unmoral pathetic work?

  8. #53
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    Quote Originally Posted by hdugger View Post
    I wasn't actually saying (or thinking at the time) that it was the lesser of two evils for this patient. I felt/feel that she needed to get to a real doctor. But I felt that the path to a real doctor ran through her being greeted here as a parent needing support and not some maybe-plant who needed to be frisked at the door. If she'd been welcomed, in the same way that every other participant is welcomed, I think she could have moved on to the treatment (I suspected) she needed. But, without that support, the only place she had to go to was the one that was telling her that surgery would kill her child.
    Yes, I went back and re-read that post again.

    I also think that being headstrong like most of us who have lasted here all these years probably are, we sometimes forget that not everyone has as thick a skin as we do. Thanks for the reminder.
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  9. #54
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    Quote Originally Posted by mariaf View Post
    And I always say that when choosing a treatment method for scoliosis, we are all just trying to choose the lesser of the evils.
    I don't think some people are thinking in those terms, unfortunately. They don't tend to see this as a game of cutting losses but rather they engage magical thinking to hold on to an unrealistic notion of "normal."

    Surgery bares the brunt of this magical thinking because it is viewed as the diametric opposite of "normal." If they can focus on just that then they never approach the case of whether the patient would be worse off without surgery IRRESPECTIVE of how bad surgery might be. It is thinking in a vacuum.

    If surgery was a choice then nobody would get it. To suggest it is a choice is to be thinking magically, not accepting that normal is off the table, and not trying to cut losses.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  10. #55
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    Quote Originally Posted by mariaf View Post
    Thanks for the reminder.
    And thank you for taking the time to make sense of my (mostly) convoluted writing. It is a gift to be understood.

  11. #56
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    Quote Originally Posted by flerc View Post
    What kind of forum may allow 6 years of your unmoral pathetic work?
    The rubber has hit the road. The chickens are coming home to roost.

    Science is the only game in town.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  12. #57
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    I'm not saying, btw, that some participant (even one of the ones we're talking about) is not going to turn out to be a plant. I'm only trying to err on the side of presumed innocence until proven planty

  13. #58
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    Quote Originally Posted by mariaf View Post
    And I'm not sure why it would even matter with regard to the point I was trying to make.
    Because surely any other member's attacks would seem to be very much friendly if they are compared with Pooka1's attacks. To resist as you say you did, attacks of other members, don't means very much really.

  14. #59
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    Quote Originally Posted by mariaf View Post
    Maybe I am more stubborn that most (I'm sure my husband wouldn't argue that point), but I can't see all these people leaving the forum simply because someone questioned them or asked for proof of what they were saying - or even in their view, was giving them a hard time. I would think it would be more important to make sure others knew about any options that had a chance of helping others.
    Sorry, is very difficult for me to believe you don't think that Pooka1's work is not enough to don't wanting to participate here in non surgical sections.

  15. #60
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    Quote Originally Posted by Pooka1 View Post
    The rubber has hit the road. The chickens are coming home to roost.
    This is all what you have? Yes it is of course. Pathetic.. really pathetic..

    Quote Originally Posted by Pooka1 View Post
    Science is the only game in town.
    Don't talk about what you don't know please.. is obvious you are a perfect fraud!

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