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Thread: VGrafen's Journey to a Cure

  1. #1
    Super Moderator Sue Pendleton's Avatar
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    Jul 2001
    Wisconsin USA

    VGrafen's Journey to a Cure

    This is about the thread in the Cure Forum that chronicles Vgrafen's search for a cure. It appears a few people have a problem with the content of the thread, the context and the metaphysical aspects of it. As a moderator for that forum I'd like all our members to understand why I have supported its continued inclusion in the Cure Forum and not move it, say, to the Life Forum.

    In my humble opinion, and yes humble it is, many people do not have a clue that a cure will be and is a long and nasty trip and it ends or should with walking, sex and being able to lock a bathroom door and do stuff alone. Some of us realize that if we don't confront the nightmare now we are doomed when the physical cure comes to go through the pissed off, deprivation angst, blues, body hating vileness afterwards and that will just prolong the kind of misery no one should go through. I want to jump for joy on cure day and get right on with life. I have read many or most of the postings on our CareCure site and believe that many of our CC crowd will not and wind up in a shrinks office, sitting on their butts again *and paying for it* to be labeled with PTSD and trade being one kind of cripple for another. (Yes, I have no use for political correctness either.)

    I'm sure you've all at times felt certain articles or posts do not belong in specific places on this site or anywhere on this site. Great. Glad you have that opinion. But I am not you and neither are my fellow moderators. I am not smarter, not wiser, not some voice from the sky that says this is MY forum and this is how it's going to be. It's not. Seneca and I discuss the forum almost daily and while we sometimes disagree, we also try to understand the others point of view. I also have only one major guideline and it will be enforced from now on: that is to attack the idea or theory but not the person or group. This goes for everyone including Vgrafen.

    I'm not going to go back and read every posting to be able to correctly quote whoever it was that said this thread remains due to member's desires. After reading what Grafen filled his thread with in between his reports of how things went in Taiwan and have been going since; I decided as long as I'm a moderator on Cure that his journey is welcome here. You see Cure is the cellular level stuff that the microbiologists study, it is the PT that makes every unmoving muscle we have hurt beyond bearable, it is trying to get it through a politicians head that if you cure the problem now then Medicaid will not bankrupt their state's budget in 10 years because it's already eating up 20% of most state's general funds. It is coming to terms with hating or loving whatever your body is now, was and might be. And Melissa, hating your form does not meaning hating the wonderful Melissa inside. When my injury hit I was actually reasonably happy with my less than perfect body. I know. A rarity with women. Does that mean there is some law that says I have to like this lardy, jello quad gut now? Nope. Doesn't mean it has to make me depressed all the time either. And Cure is making our clinicians, our doctors, our surgeons, understand that risk is relative and so to GET ON WITH IT!

    Cure is much like living. It is a process not an end point.

    So I ask that you all allow our writer friend to continue telling the world the good, the bad and the incredible grossness of plegicdom. And I hope he has better luck than I at goading others into doing their part to reach the cure we all need yesterday.
    Please discuss the thread by Vgrafen here in the Feedback Forum so that we can keep Graf's Journey Part 1 locked and if needed, open a Graf's Journey Part 2. That thread is getting way too long for our newer members to wade through.

    Original Cure Journey topic at:

    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

  2. #2
    I applaud you, Sue Pendleton.

  3. #3
    Sue, great job.

  4. #4
    Senior Member rdf's Avatar
    Join Date
    Jul 2001
    Someplace between Nowhere and Goodbye
    And if you ever offend Mary or any other innocent AB again, you'll deal with me directly.
    Don't threaten me you little creep. Jesus, you're a piece of work, dude.

    Here ya go 'lil fella, let me help you out. I'll send you my address:

    481 North 2nd St.
    Grover Beach, Ca. 93433

    ANY time you want to deal "directly" with me, for ANY reason, then please come visit me. Please. Just take 101 South and Grover Beach is right on the coast, 80 or so miles north of Santa Barbara. You probably know where it's at. 101 runs right by it. I get home from work anytime between 6:30 and 8:00.


  5. #5
    Senior Member rdf's Avatar
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    Jul 2001
    Someplace between Nowhere and Goodbye
    ************************************************** ***********
    This will be my last comment on this issue. After this, I've said all I'm going to on this subject, and will not entertain any questions in the future about it. These are my opinions only, I speak for nobody else. Also, I'm not personally attacking the moderators in this post, nor anybody
    else. They're human, and make mistakes like we all do, but that doesn't also make them immune to being held criticized or held accountable. That's how we all learn. You don't have to read this, so stop. If you don't, it was your choice. I want this put to rest.
    ************************************************** ***********

    Good idea, Sue, about airing feelings out. I'll take you up on it. Please don't take my opinions as insults, they are my feelings, and not meant personally against you or Seneca. It's how I've felt.

    Mary, let me try to explain something. I've been accused, by even the founder/owner of this website, that I personally attacked you. They're mistaken, I did no such thing, and I'm tired of hearing it. Anybody please post where I personally attacked Mary.

    Let me continue. Let me try to explain how I felt, how others felt about the situation, so maybe you can understand better. Mabye we can all learn to live together if we can air our true thoughts an differences, and feelings, without the fear of recrimination Wise speaks about in another thread.

    blue was called a paralyzed piece of shit, plain as day, you can go look at it if you so want, it's still there. When it happened, no moderator said anything about it.

    Ok, it's understandable, it happens, things slip by. But when it was brought to their attention, they still didn't do anything. So there it sat, blue being called a paralyzed piece of shit, the moderators know this, but they don't say
    anything. Ok.
    (I'm not saying moderators should be more than human, and should be perfect. But I'm also saying if they are negligent, they should be held accountable for it)

    Now, at the same time, other moderators are warning people that insults to others will not be tolerated, and they warn them. For such things as calling somebody a "dumb-ass," and other such terms. Much less vicious and hurtful can what blue was called, for sure.

    Did the cure forum moderators say anything about blue during this time, day after day after day, after day? Nope, even when it was clear it was an important issue, and all they had to do was tell vgrafen he was wrong, and what he said would not be tolerated, just like everybody else is told. (We should make this an across the board policy, no matter what.)

    But for whatever reason, they flat refused to. Then it really got to be an issue, feelings were real high, and still they refused to say anything, which would have ended this whole fiasco immediately.

    Can you imagine how blue felt? The moderators, by their very silence, gave some credence to the insult. They knew very well that people were getting upset and emotional about the issue, but they did not say a word, publicly, which is what is needed and what others get. They haven't to this day.

    So, here's blue, feeling like he's nobody and doesn't count, and I understand why, he was treated that way...all they had to do was what they are supposed to do, what other moderators do, but they didn't. Wouldn't you feel like shit?
    When the same man called all paraplegics disgusting creatures that should be chained up, put away, again, not a peep. And the insult lay there and lay there, and festered, nobody lanced it like it should have been, lanced it with a warning.

    Ok Mary, here's where you come in. You know, you didn't have to say anything, but you did. Mary, You went out of your way to say such things as, to paraphrase, 'calling blue a paralyzed piece of shit didn't need judgement,' 'it's just a wild cannon comment.' Your words, Mary, and no, you weren't talking about mad, please.

    Essentialy, to some of us, you showed utter lack of concern for blue's feelings, whether you meant to or not. You condoned the insult when you could have left everything alone. I've thought that if you are going to call somebody something, or condone somebody being called such a thing, just maybe you should first ask yourself how you would like to called that. How you might feel. I try to do that, but I'm not battin' 1000, for sure.

    But you didn't, Mary. If you had, you wouldn't have said such a thing. Then I thought, hell Mary doesn't have an sci. There is now way in hell she could know how blue felt, much the same way I can't know how a woman feels. Calling Mary a
    paralyzed piece of shit wouldn't be an insult to her, simply because she isn't paralyzed. It would be laughable to call her that, she wouldn't be offended.

    But to somebody with a long term sci, being called that is not laughable, it's completely different, especially coming from a guy who thinks sci is something to be ashamed of, something disgusting, something that you should hide from the
    world. And you can't understand that, Mary, because you aren't suffering from an sci. I don't think you knew the harm your words could cause, especially after no acknowledgement of blue's equality from the mods (my opinion).

    So I asked you if you would think differently if you were called the same thing. That's not a personal attack, it's a warranted inquiry. But it couldn't be the exact same thing, because you wouldn't be insulted and wouldn't understand the pain if you were called what blue was. So I made the question to you very similar and more relative to your situation, so that you might see how your words could hurt.

    And I hoped you learned something by this. Sci people who have lived with it for a long time have feelings that you could never understand unless you were paralyzed, period. You can't put yourself in their shoes, and thank god for that, for you.

    I do apologize for hurting your heart. I didn't know you had had trouble for being called that before, or I would have chosen another scenario. So I'm sorry you suffered as a person, inside, because I care about how everybody feels inside, and I know how it hurts inside, and I don't like to cause it when it hurts inside. I'm sorry I hurt your heart, Mary.

    But I ask you to try to open your world a little more, and try to understand that there are other views out there than those expressed by vgrafen, not everybody believes he/she's an abomination, and that you had no need to say what you did about blue being called that, even if it was from because you might not know of how sci poeple feel. I hope you learned (remembered might be better, sometimes we forget). I hope you remember that words can hurt, even if they don't seem as if they might solely because you can't know how another group of people feels. And yes, I was emotional, it's very emotional to see someone discounted as I felt blue was.

    Also, let me add this: if you classify such things as what blue was called wild cannon comments and not in need of judgement, what's the big deal about what I asked you? You should be expected to be asked how you would feel if you were called what you condoned calling another person, and the question should be asked, and rightfully so.

    I hope this helped you understand, Mary, how I feel. It's my true thoughts and emotions on the matter. I'm done with it.

    That's my last word on the matter. I've written all I'm going to on it. All I ask in closing, again, is to please treat every member with the same dignity as you treat everyone else. I know it's human nature to treat those you like better than others differently, sometimes, and it probably can't be helped, we're all guilty of it.

    These have been my opinions of how I've felt over the last few days, and about how blue may have felt. Let's hope nobody is put into such a predicament again. Also, it's not about bashing the mods. It's how I felt over a period of time, my true feelings. Maybe I'm an emotional guy, but if so, it's partly because of knowing friends who have died because they lost their self-worth. I meant to offend nobody in this post. But we need to be aware of unequality, we all can sometimes practice it without ever realizing it, none of us are immune. As I said, that's my last comment and I won't answer questions about it. There's nothing left to say, for me.

  6. #6
    Senior Member Jeff's Avatar
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    Jul 2001
    Argao, Cebu, Philippines
    I won't address this to RDF since he's done with the subject. But for everyone else....

    V's fated comment occurred here on Sep. 20, 2002 [currently page 13]. It was part of an exchange involving several people who didn't like V's exaggerated descriptions of paralyzed people. V was responding to a post by Blue that criticised his approach. Looking back at it I think Blue was rather frank with his opinions about V but in light of the subject matter, probably entitled to them.

    V's reply was rather harsh, as everyone has heard about from RDF, these many times. He did soften it up slightly, however, by immediately ending his post with "...or am I somehow mistaken?"

    The very next post was a reply by Schmecky:


    You guys need to sling your mud via e-mail, or better yet, bring it to a close. It doesn't leave a positive image for newbies when reading these posts. I write this with my head ducked for cover!!
    I think this is the reason there wasn't a warning issued by a moderator. Our community has a way of policing itself at times.

    Anyway, the very next post came an hour later with V replying this:

    Indeed, Schmeky

    I am herein appropriately... cooled.

    So, as you can see, the situation was fairly well handled without moderator intervention, which is really a better way. People policing themselves while posting is the best way, of course. But others calling a foul at the point of a foul is certainly appropriate....whether they're a moderator or not. Schmecky's reply was awesome, it used logic and gave a great reason for the mudslinging to end.

    After this all proceeds according to history in the Taiwan topic. It's out there if anyone is interested.

    Along comes January 24, 2003. As result of another exchange RDF posts that it's past time to move the topic to the Life Forum. Says he hopes V is prefacing his comments on the radio with disclaimers, etc. Currently, page 4 in the Taiwan topic, if you're interested. Of course V responds. RDF comes back on January 25, 2003 [currently page 3] with more ammo. This time he has the "paralysed piece of shit" comment to work with. And thus began the current "favoritism" attack on the moderators and this web site.

    Well, folks, you can believe what you want to believe. I'm done trying to persuade anyone of anything. What I can do is tell you that V was cautioned at the time, and that he's been cautioned since. In fact, there have been many direct communications to him by the Cure Forum moderators regarding his posts. And one thing is clear, he has the same rules as everyone else.

    A public chastisement from the moderators for something that occurred back in September??? Sorry. Vgrafen cooled it that same day humbly accepting reproof from another member. That's about all we can ask concerning that situation.

    ~See you at the SCIWire-used-to-be-paralyzed Reunion ~

    [This message was edited by Jeff on 02-12-03 at 11:28.]

  7. #7
    I just went back and re-read vgrafen's comments and my responses. I still can't find any vulgarity in my own writing and I absolutely reject the notion that this vulgarity was two-sided.

    All I can tell you Jeff is that you should either get used to my comments or ban me completely from this website. Because in the future I intend to respond to vgrafen EVERY time he insults the SCI community with his rants. I'm not the one you need to worry about though because history shows you I don't resort to the same language he uses. I'm part of the SCI world through no choice of my own, just like everyone else here. If I can't disagree with someone who views other SCI's as repugnant, then I really need to find someplace else to learn what's happening with cure research.

  8. #8
    Senior Member dogger's Avatar
    Join Date
    Jun 2002
    Mitchell , Qld. Australia
    in my humble opinion , one word from VGrafen directed to people who took offense and particularly Blue [ who i feel was correct in feeling he had been insulted ] would have gone a long way to defuse this issue ! that word ...SORRY . there is an old adage along these lines , '' good manners cost nothing and achieve returns many times over '' .

    thank you

    every day i wake up is a good one .

  9. #9
    Senior Member Jeff's Avatar
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    Jul 2001
    Argao, Cebu, Philippines
    Blue - I said you were frank in your opinions about V. I didn't say anything about vulgar. Please tell me where you read "vulgar."

    And who said you can't disagree with another's opinions here? Please tell me where you read that, too.

    Dogger - I agree with you completely.

    ~See you at the SCIWire-used-to-be-paralyzed Reunion ~

  10. #10
    My apologies Jeff, you didn't use the word vulgar. And I appreciate the fact that we are allowed to disgree with other participants. I promise I will keep my remarks civil, but my intention is to let nothing slide that insults the SCI community. I won't remain quiet again just so I don't offend someone's "fan club".

    Thank you for your comments and quick response.

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