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    #31
    I mostly get these kinds of comments said to me when I'm not with Bill but after the fact .... after we've been to a social event or something! I'm a bit torn by these conversations because I think we've all gotten so accustomed to the hand we've been dealt that we don't even recognize it as difficult or a choice to be made ....... it is hard and depending on how the comments are phrased they don't always offend me .... sometimes I'm more embarassed for the other person making the comments .... people say stupid stuff when they don't know what else to say and they end up looking pretty foolish ...... probably saying something to themselves as they walk away "gawd I can't believe I just said that " ... its even happened to me ....

    It might be because we come from a small prairie town but generally I believe the things people say to me/us comes from a genuine place of concern ..... not pity ! I guess we're lucky in that regard!!

    I've always thought that the rest of the world .... outside our world ... find themselves in the position of being damned if they do and damned if they don't when it comes to what to say or not say ..... not everyone was born with good common sense and there is no rule book .... lets face it we're all just wingin' it here ......
    ...... and yeah I've used the statement .. " you have no idea what you can do until you must .... (and then I add) you'd probably surprise even yourself " ....
    .....and then I think to myself "and I pray they never have to find out" !!

    Obieone
    ~ Be the change you wish to see in the world ~ Mahatma Gandi


    " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
    Jane Siberry

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      #32
      Hi, AF Girl. Matt's picture looks as if he is C-5 incomplete, or is he T-5 complete?

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        #33
        Hello to you, Uncle Peter

        I take it you found his avatar . Actually, Matt's very much "complete" - he calls himself a "classic C-5." No triceps at all, no finger movement, and with his palms up, his wrist just hangs - he can't hold his hand level with his forearm. He's definitely ASIA A (zero sensation below his injury level.)

        Sabine

        PS: I love New England (in the Summer )!!!

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          #34
          You're such a good person

          Well yes, as a matter of fact I am. I'm terrific and awesome, and I also have fantastic spouse whom I love completely. Do you ever feel bad for an able bodied couple because they might never get to experience the kind of physical intimacy that you enjoy? I guess it's hard for some people to imagine that a relationship between a disabled person and an able bodied person can introduce many blessings between the two that wouldn't be there otherwise.

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            #35
            Originally posted by cmediac
            Do you ever feel bad for an able bodied couple because they might never get to experience the kind of physical intimacy that you enjoy? I guess it's hard for some people to imagine that a relationship between a disabled person and an able bodied person can introduce many blessings between the two that wouldn't be there otherwise.
            I don't understand. Are you saying that a relationship between an AB partner and partner with a disability has a greater physical intimacy than one between two AB people? How so?

            C.

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              #36
              Originally posted by Tiger Racing
              I don't understand. Are you saying that a relationship between an AB partner and partner with a disability has a greater physical intimacy than one between two AB people? How so?

              C.
              Sorry -- didn't mean to get off topic. From a caregiver's perspective, my spouse and I have an incredibly physically intimate relationship. In an AB relationship, one spouse doesn't usually bathe the other every day, or clean them after a bowel movement, or examine every inch of their body, or dress them, or drive them everywhere, or sit up with them in the middle of the night when they have gas and need to burp. I see and experience every part of my spouse's physical life, and this adds intimacy to our relationship. There's nothing left to hide when you are that physically close. That's all I meant.

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                #37
                Originally posted by cmediac
                There's nothing left to hide when you are that physically close. That's all I meant.
                Yes I completely agree with this statement ..... I comfort myself with this notion when I find my mind going to the "feel sorry for myself place" thinking about the things we can no longer enjoy (in the old way) together ..... its bitter sweet for me though ... I'd be lying if I didn't say I wish it weren't always so .... Bill and I have been married over 30 years and have 4 kids together so we have alot invested in each other younger couples don't have ... along with many memories to reflect on. I've often wondered how I might have dealt with this if I were much younger and just beginning in a relationship ..... it would be alot to consider .....

                Obieone
                ~ Be the change you wish to see in the world ~ Mahatma Gandi


                " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
                Jane Siberry

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                  #38
                  This is kind of an old thread. But I just found this sight and read it and had to register and post. Why do people feel the need to say that? If your relationship is strong you deal with what comes. When my husband had a car wreck in '96 a nurse told me "don't feel bad, most spouses leave after an injury like this." What the heck? Someone in the care field telling me this. I hate it when people say, I'm such a good person. He does just as much taking care of the house as I do, deals with the kids and holds down a full time job. I do what I do because I love him, not because I'm some kind of saint. Our sex life sucks, I feel guilty about that. A lot of times I wish I did have some time away, I feel guilty about that. I guess I feel like a "good" person wouldn't feel like such a bitch all the time. Sorry, I got off track, I just hate when people say that. Ok vent over.

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                    #39
                    Originally posted by REM
                    I guess I feel like a "good" person wouldn't feel like such a bitch all the time.
                    P-shaw! If you're working on it, my guess is you're a "good" person. Nobody likes a martyr and nobody's perfect. Cut yourself some slack.

                    C.

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                      #40
                      That you have to be a great person comment bugs me too. I have a few answers

                      "yes, I am amazing"
                      "yeah, not many people are as great as I am"
                      these two throw them off cause I dont sound like a great person when I say that

                      "Not really, I married him for the sex"
                      thats my 'oh shut the f*** up comment'

                      sometimes I confront them on it and explain how iggnorant of a comment it is

                      but these days I mostly ignore it. We also have a transracial family to top things off, so stupid comments are really on the rise. People are actually more likely to mention a race or adoption thing ("are your kids mixed", "who is their father" (with my husband right there) "how much did they cost" "are they brother and sister" "do you talk to their mom" "how much do you know about their dad" "do they look like their mom or their dad").

                      I also have an amazing filter now. My husband had one when i met him and I always wondered how he did it. now I can do it too. Sad to say but my kids will have to grow up with a filter too.

                      My husband hates a blanket random question "What happened to you"? I totally agree with him, i get asked "what happened to your husband". That one is super dumb too.
                      - Moody

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                        #41
                        I'm 35 and this 65 year old guy at church ask me if I was a veteran of the Korean war. I said no the Civil war.

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                          #42
                          Originally posted by kate
                          Well, my thought is that in that little silence people might just come to an understanding all on their own.

                          "You're such a good person."

                          What lies underneath that kind of talk is an assumption that this business of living happily with a person who is disabled by sci must be something so difficult that only "good" people can pull it off.

                          What they're actually saying is, "You're not getting as much out of your marriage as I am out of mine. Your husband is flawed. He can't give back. You are therefore doing this out of pity, which makes you a 'good' person."

                          This is the purest bullshit, as we all know -- but in my experience you don't effectively counter subconscious ignorance like this with a lecture. You try to say something that points the person all on their own toward what is right in front of them. Hence, "Oh, do you think he's not worth the trouble?"

                          That line is about pointing them toward what they actually think without accusing them of it. And yeah, I want them to feel a little pinch of shame--there's nothing wrong with feeling ashamed when you've been a boob.

                          To each his own, though. It's definitely not something any of us are going to fix anytime soon. By the way, if you want to point people at a story that will help to educate people about sci, I wrote one that attempts just that. It's doing very well with people outside the sci community, and the most common reaction I get from readers goes like this: "I'll never see a person in a chair the same way again." Feel free to recommend it!

                          http://www.lulu.com/unbreakable
                          Post of the year candidate.
                          "So I have stayed as I am, without regret, seperated from the normal human condition." Guy Sajer

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                            #43
                            Originally posted by Mike_Stan
                            I'm 35 and this 65 year old guy at church ask me if I was a veteran of the Korean war. I said no the Civil war.
                            lol... how did u come up with such a good answer so fast. That one made me laugh...
                            MandyRae

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                              #44
                              How ya doin', Kid

                              How ya doin' kid? That is what I get as the spouse of a recent SCI. Can't believe people actually say that. I'd like to tell them how I'm really doing, but don't want to be rude. I usually say "hangin' in there" or "OK". One day after the same man asked the same question I said "How do you think I'm doing??" Then I felt guilty as if perhaps that was rude. They also ask "what can we do for you kid?....we feel so bad for you." I just ask for their prayers. But after hearing that for the umpteenth time I said..."I'll let you know when the hospital bills start rolling in?" That person doesn't ask what he can do for me anymore. Was that rude of me....if not, why am I feeling guilty. I am fed up with empty words from people who have no idea what it is like. How tired I am but have to keep plugging away and the expense of just driving a long distance to the hospital every day and pay for parking and "lousy cafeteria food". Anyway...I've vented...like to hear your responses.
                              Brenda (working RN, spouse of C5-C6 injury)
                              Brenda

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                                #45
                                "Saint Mary"

                                I hear all versions of this almost daily. My husband and I married 5 years ago when he was 25+ years post-SCI. He was walking with a cane, driving and working at the time. Due to a bad episode of septacemia, he never got back his strength and has declined alot in the last 4 years. I say I am the lucky one who knew what I was getting into, did my homework and was as prepared as I could be for the challenges ahead. I feel more empathy for those like Dana Reeve, who did not choose this life and had to face the shock in a moment. I am very blessed and love my husband very much. Life is difficult and almost impossible at times but I thank God every day that I have with my husband.
                                My love and blessings to all................

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