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Thread: Murderball: John Mayer says...

  1. #41
    Senior Member artsyguy1954's Avatar
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    Quote Originally Posted by Buck_Nastier
    I get mad when I meet ab people who tell me that they broke there
    neck and were told they'd never walk again, but they were
    "determined" and "wouldn't accept being paralyzed", thats why they
    can walk.
    Me too. Like we are not trying hard enough to walk again. We must obviously like our comfy wheel chairs enough. Harrumph!
    Step up, stand up for:
    http://www.stepnow.org

    'He not busy being born is busy dying." <Bob Dylan>

  2. #42
    Senior Member artsyguy1954's Avatar
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    Quote Originally Posted by 2jazzyjeff
    To an extent I can see how he wouldn't change a thing (bc he would be a nobody if he did) but I would still want to function 100%. Money and fame is no trade-off for my independance.
    Jeff, you are my man.
    Step up, stand up for:
    http://www.stepnow.org

    'He not busy being born is busy dying." <Bob Dylan>

  3. #43
    Quote Originally Posted by artsyguy1954
    OK, OK, I get it. I guess I am just really self centered and I haven't been in this chair long enough to get used to the whole idea. I just want to get out of the damn thing.

    But as Chris (our resident Greek philosopher, no sarcasm or offence intended here. ) so succinctly put it, there is no divine masterplan and I agree. There is only one "plan" and that is life in all its glory, messiness, what we make of it, beauty, ugliness, SCI ..... I could go on.....somebody stop me...
    Oh, I'm a curemonger myself. (That's a word Wise invented LOL). The cure is my holy grail too. I don't have any problem with people that see the priorities differently though. It takes all kinds and I figure we need it all. I do get kind of annoyed at the privileged ones that choose to do nothing...

  4. #44
    Senior Member artsyguy1954's Avatar
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    Quote Originally Posted by betheny
    Oh, I'm a curemonger myself. (That's a word Wise invented LOL). The cure is my holy grail too. I don't have any problem with people that see the priorities differently though. It takes all kinds and I figure we need it all. I do get kind of annoyed at the privileged ones that choose to do nothing...
    You are right, Betheny. As long as there is no cure, both care and cure are important.
    Step up, stand up for:
    http://www.stepnow.org

    'He not busy being born is busy dying." <Bob Dylan>

  5. #45
    Here are excerpts from one my emails when my son Noah was in rehab. He was about three months post-injury at the time. Part of the rec-therapy involved a video of quad rugby from a local TV station. This was followed up with an outing to a tournament being held in the Portland, OR area.

    January 24, 2003
    Dear Friends and Family;

    Noah’s week has been quiet with progress that presents itself in the most ordinary activities. Everything he does, except watching TV, is therapy. Feeding himself, brushing his teeth, showering, wheeling to and from activities with the other therapists, all these little things help to strengthen him. It is irrelevant to think of the work that lies ahead. It is all right there in front of him each moment.

    His discharge goal date is February 6th. That seems optimistic and frightening. The level and quantity of care he receives at RIO are extraordinary. How can Marilyn and I possibly provide the volume and expertise he currently receives? We cannot and yet the goal or a date soon thereafter will be met and we will be expected to give the care or have it provided.

    <snip>

    Sunday we went to a Quad Rugby tournament. I was pleased in a bittersweet way to see so many men with injuries similar to or even worse than Noah’s participating actively in their lives. Their level of independence impressed me and gave me some promise for Noah’s future. I needed a picture of what things can be. This was very parental, very middle aged of me.

    Watching Noah, however, I could see he was bewildered and uncomfortable. He is not ready to accept such a future. Inspirational yes, but still diminished in his eyes.

    Such is the high wire of hope that he treads upon. How long can he maintain his balance and how close can he come to the other side and recovery? If the wire proves to be an illusion, there is no net. Many are reluctant to leave the safe platform of acceptance and resignation. Not Noah, not yet. Each day he totters forth into the mid air of his innocence, alone with his hope. He may be sick to his stomach or scowling with anger but he is trying to ride that high thin wire. It only extends as far as he can believe. Who could dare to deny him this desire?

    Far below an army of friends, family, and unknown supporters project a buoyant cushion of air to help him maintain his balance. This cushion is our collective life force of prayer, positive thoughts, donations, alternative medicine, work and love. Whatever we can think to send his way is a benefit. If necessary, we will catch him. We are his net. But we cannot get up on that wire with him.

    <snip>

    John
    "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang

  6. #46
    Quote Originally Posted by AO
    I don't mean this as an attack on Zupan, I'm just curious if anyone who knows him can elaborate on how incomplete he is? I watch other quads very closely to compare my function to theirs. Seems like he has torso and at least some leg function, which makes me wonder if he has B&B function too?
    Zupan is a walking quad. Looking at him, you might first think that he is a low level, incomplete para. His arms are ripped and, in a shirt, his torso looks trim and muscular. With some support, he can stand fairly easily and he can walk haltingly. However, if you look more closely you will notice that his hands are somewhat paralyzed. He has almost no grip at all in his right hand and he has a lot of spasticity in his body. He may get it up, but it's not like he has normal sensation all over his body.

    As we know from fuentejps and others, dealing with life as an SCI is a shitload easier the more incomplete you are.
    Life is easier the better looking you are and the more money you have, too. AB, white, land owning, Xian men practically get a free ride in American society... damn them!!

    Second point is something to which a few others have alluded. I think any SCI publicity is fantastic and depicting SCIs are confident, outgoing and productive people is great progress. There are so many negative cripple stereotypes that it's refreshing to see them portrayed the way they are.
    I was filmed for a documentary once, but 98% of the footage ended up on the cutting room floor. When my family saw the finished documentary on HBO and I mostly wasn't in it, my father joked that I must not be pathetic enough. Except he wasn't kidding.

    I was appalled at the finished documentary and pissed off that the whole thing seemed to dwell on what is different about having a disability, rather than showing the AB that we are still people. It sensationalized all of the negativity while simultaneously portraying people with disabilities as couragous and "special". I don't think it did any good for people with disabilities. In fact, I think it could have done damage. Personally, I don't want strangers feeling sorry for me, even if it makes them donate money to research. A possible, future cure isn't worth a decade or more of being viewed and treated like some pitiable creature.

    C.

  7. #47
    Quote Originally Posted by Juke_spin
    Zupan, having had little life experience pre sci and not having accomplished much
    What the Hel do you know about Mark's life before his accident? And exactly how much did you accomplish by the time you were 18?

    got his head up his ass with the mind reeling grandeur of the fame/celebrity of climbing to the top of the quad rugby ladder.
    Oh, yeah, what a diva the man is. Your ego couldn't possibly compare to his.

    Never mind that it's so sadly the "big fish / small pond" syndrom and reality; Zupan will need some time to be able to back off and see it for what it is.
    Apparently most of you are unaware of how long Zupan has been handicapped. Ya'll make it sound like he's some clueless newbie who will come to his senses about how shitty his life is if we just give him a year or two. Guess what, folks? He's been doing the gimp thing for more than a decade already. Quite a bit longer than half the most prolific posters on these boards. Sorry he's not as bitter as some people are, but if that's what is then you can count me out too.

    We can find our way and, hopefully, so can Zupan, eventually.
    What way are you talking about? The guy has a job and a life. He has both written a book and been featured in a documentary that tell his individual story concerning his disability. He doesn't speak for you or for me or for anyone else. He's just telling his own story. It stuns me how much that seems to piss some people off.

    C.

  8. #48
    Quote Originally Posted by Tiger Racing
    Sorry he's not as bitter as some people are, but if that's what is then you can count me out too.
    Most of us don't get to enjoy our injuries as much as Zupan does.

    Call me bitter, but I would prefer to not be disabled.

  9. #49
    Quote Originally Posted by Buck_Nastier
    Most of us don't get to enjoy our injuries as much as Zupan does.
    Oh, so if you got a little publicity, then you'd be OK with your injury?

    If you seriously don't get that Zupan isn't enjoying his injury and is merely getting the most out of what life has handed him, then I don't know what to tell you.

    Call me bitter, but I would prefer to not be disabled.
    I'll call you bitter if you insist that anyone with a disability is supposed to spend their time trying to convince AB people that living with a handicap is too sucky for words and that they better cough up money for a cure because nobody could POSSIBLY have a bearable life if they have to use a wheelchair.

    Do I really need to state in every one of these posts that I hate being handicapped and probably think about being "normal" at least 100 times a day in order to avoid being accused of being in denial or something?

    C.

  10. #50
    Quote Originally Posted by Tiger Racing
    Oh, so if you got a little publicity, then you'd be OK with your injury?
    Hmmmm, I don't remember saying that. But if I did get a little bit of
    publicity, i'd know better than to go on and on and on about how I
    wouldn't want a cure.

    Quote Originally Posted by Tiger Racing
    If you seriously don't get that Zupan isn't enjoying his injury and is merely getting the most out of what life has handed him, then I don't know what to tell you.
    I admire him a lot for what he has done for himself, he obviously does
    have a lot of drive. But why would he remark that he's happy he got
    hurt if he wasn't enjoying it?

    Quote Originally Posted by Tiger Racing
    I'll call you bitter if you insist that anyone with a disability is supposed to spend their time trying to convince AB people that living with a handicap is too sucky for words and that they better cough up money for a cure because nobody could POSSIBLY have a bearable life if they have to use a wheelchair.
    I haven't said any of that once on this website. You're thinking of
    someone else.

    I rarely discuss my injury with people, but people do ask me about
    it. I don't tell people "they better cough up money for a cure", I
    explain to them what stem cell research is and how it could help
    ill and disabled people. Shame on me I guess.

    Quote Originally Posted by Tiger Racing
    Do I really need to state in every one of these posts that I hate being handicapped and probably think about being "normal" at least 100 times a day in order to avoid being accused of being in denial or something?

    C.
    No you don't, but you shouldn't try and make people feel ashamed
    or pitiful for wanting to live a better life and advocating a cure.

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