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    #61
    I have wondered if I really inspire people to roll a wheelchair or poop in a bag. Oh yea you are such an inspiration. Give me a dollar for every time I have heard that one in the past 8 yrs.

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      #62
      An old post of mine:

      There's an inspiration hierarchy.

      CareCure has been around so long that some thread topics have become almost cliche in their reappearance. Of course, the vast majority of people we meet have no clue about what life with a SCI is really like. And I have no idea what's like to grow up in a famine-ravaged African nation. I also have no idea what's like to live in a country that's being torn asunder by civil war with bombs dropping around me. I haven't had cancer (yet) and have been spared abject poverty. The list of shitty things that I can't relate to is seemingly endless and I don't berate myself for not having a more intimate awareness or appreciation of it all.

      We are all to some extent narcissistic creatures. Very few people feel my pain as I experience it, and I'm pretty confident that I'm oblivious to the pain of others. This is not because I'm unsympathetic or lacking for empathy, but because like most people I'm limited by the amount of suffering I can take in before it compromises my ability to function. We're always trying to balance being aware and sensitive to the plight of others while trying not to spiral in despair for how little we can control things outside of our environment and understanding. Seems pretty healthy to me.

      So if someone calls me an inspiration or gives me God's blessings (and I'm an atheist), I don't quibble. It's beats being ignored and or made to be invisible.

      We're all somewhere on the ladder of either being someone's object of inspiration or busy searching for someone to inspire us. Disabled and able-bodied alike, life is a constant struggle. We look to others for guidance, support and reassurance. If someone locates that in me, it's a gift they offer to themselves and I don't begrudge them for it. Intentional or otherwise, it provides a moment (usually very fleeting) of uplift.




      stephen@bike-on.com

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        #63
        I miss John Callahan and his cartoons!!!

        (KLD)
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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          #64
          Very nicely stated Stephen. I totally concur. It does beat being ignored.

          Funny thing is I am rarely told I am an inspiration these days--and I notice via facebook that some people get that ALL the TIME..I guess I must be doing something that makes me seem less sad and more "normal" to others..as really isnt that the real basis or criteria for being that kind of "inspiration" in the first place? You must elicit that feeling of "you poor thing"

          "Look, you are so sad and your situation so worth of my sympathy, that you living in it in spite of this is indeed an inspiration to me! I feel so much better about my life having seen your story"

          Bottom line is, if they do not FIRST FEEL and experience some level of pity, where does the "inspiration" come from? I have worked hard my whole life to make my disability not the first thing someone focuses on..or at least to make a quick transition. I don't talk about it, focus on it or allow it to be the focus of what I do. I do believe many do derive some type of benefit from the attention they get for being the "paralyzed ...." They recieve some level of notoriety or "fame", and they will get the "you are an inspiration" often due to the fact that THEY have allowed the focus to remain on their uniqueness and injury/accident. I bet Stephen Hawking doesnt get this --people see him as a brilliant man and respect him for his work-they see beyond his disability and most won't pity him. Ali Stroker is a actor and singer, who happens to be in a wheelchair. When people see her on Glee and on stage, they think. Damn that girl can sing!

          However, that being said, I am inspired by many here who may have less function or the same as I still do much more than I do and accomplish so much and have such good attitudes. But I believe I see them as an able bodied would see another ab who is an athlete or more motivated and admire them for their skills and dedication. I ADMIRE them, and I am inspired to do more because of them..but that is NOT the same.

          Originally posted by stephen212 View Post
          An old post of mine:

          There's an inspiration hierarchy.

          CareCure has been around so long that some thread topics have become almost cliche in their reappearance. Of course, the vast majority of people we meet have no clue about what life with a SCI is really like. And I have no idea what's like to grow up in a famine-ravaged African nation. I also have no idea what's like to live in a country that's being torn asunder by civil war with bombs dropping around me. I haven't had cancer (yet) and have been spared abject poverty. The list of shitty things that I can't relate to is seemingly endless and I don't berate myself for not having a more intimate awareness or appreciation of it all.

          We are all to some extent narcissistic creatures. Very few people feel my pain as I experience it, and I'm pretty confident that I'm oblivious to the pain of others. This is not because I'm unsympathetic or lacking for empathy, but because like most people I'm limited by the amount of suffering I can take in before it compromises my ability to function. We're always trying to balance being aware and sensitive to the plight of others while trying not to spiral in despair for how little we can control things outside of our environment and understanding. Seems pretty healthy to me.

          So if someone calls me an inspiration or gives me God's blessings (and I'm an atheist), I don't quibble. It's beats being ignored and or made to be invisible.

          We're all somewhere on the ladder of either being someone's object of inspiration or busy searching for someone to inspire us. Disabled and able-bodied alike, life is a constant struggle. We look to others for guidance, support and reassurance. If someone locates that in me, it's a gift they offer to themselves and I don't begrudge them for it. Intentional or otherwise, it provides a moment (usually very fleeting) of uplift.




          Last edited by sherocksandsherolls; 3 Mar 2013, 10:28 PM.
          "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” ~Carlos Castaneda

          Comment


            #65
            Originally posted by stephen212 View Post
            An old post of mine:

            There's an inspiration hierarchy.

            CareCure has been around so long that some thread topics have become almost cliche in their reappearance. Of course, the vast majority of people we meet have no clue about what life with a SCI is really like. And I have no idea what's like to grow up in a famine-ravaged African nation. I also have no idea what's like to live in a country that's being torn asunder by civil war with bombs dropping around me. I haven't had cancer (yet) and have been spared abject poverty. The list of shitty things that I can't relate to is seemingly endless and I don't berate myself for not having a more intimate awareness or appreciation of it all.

            We are all to some extent narcissistic creatures. Very few people feel my pain as I experience it, and I'm pretty confident that I'm oblivious to the pain of others. This is not because I'm unsympathetic or lacking for empathy, but because like most people I'm limited by the amount of suffering I can take in before it compromises my ability to function. We're always trying to balance being aware and sensitive to the plight of others while trying not to spiral in despair for how little we can control things outside of our environment and understanding. Seems pretty healthy to me.

            So if someone calls me an inspiration or gives me God's blessings (and I'm an atheist), I don't quibble. It's beats being ignored and or made to be invisible.

            We're all somewhere on the ladder of either being someone's object of inspiration or busy searching for someone to inspire us. Disabled and able-bodied alike, life is a constant struggle. We look to others for guidance, support and reassurance. If someone locates that in me, it's a gift they offer to themselves and I don't begrudge them for it. Intentional or otherwise, it provides a moment (usually very fleeting) of uplift.



            BAM! Nicely stated. Thank you for sharing this perspective. I appreciate the aha moment that you provided.
            DFW TEXAS- T-10 since March 20th, 1994

            Comment


              #66
              Originally posted by sherocksandsherolls View Post
              I am inspired by many here who may have less function or the same as I still do much more than I do and accomplish so much and have such good attitudes.
              Exactly. The guy who taught me how to transfer and maneuver was a quad. He made it look easy, which helped me to think I could do it too. It's just perception. You can call it whatever you want. It's a good thing.

              Originally posted by sherocksandsherolls View Post
              But I believe I see them as an able bodied would see another ab who is an athlete or more motivated and admire them for their skills and dedication.
              Exactly. It's not just a disabled thing. If I can pay it forward - for whatever reason - it's a good thing.

              Comment


                #67
                You poor little thing!

                (how fucking pathetic he made me feel)

                Evonne
                I have a spinal cord injury...a spinal cord injury DOES NOT have me!

                walking quad-Central Cord Syndrome

                Comment


                  #68
                  I am not SCI but have a birth defect of hip/limp/arthritis.

                  A few years back I fell at work. A couple of weeks later a fairly new employee who did not know me came up to me and asked, "Are you really hurt, or are you just pretending?"

                  Hmmmmm....

                  I quickly explained to her my birth defect, etc. She was satisfied and walked away. I promptly went back into my department and burst into tears.

                  If she had known me, I would have been angry. As it was, I was just hurt by her question...

                  Comment


                    #69
                    My basketball team was playing in Philly this weekend and our team was sitting in the lobby of the hotel getting ready to go to dinner. A guy walked by us and said to his friend quite loudly "What is this a freak show?" Needless to say...some rather "not nice" comments were said back to him.
                    "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss

                    Comment


                      #70
                      Originally posted by teena View Post
                      I am not SCI but have a birth defect of hip/limp/arthritis.

                      A few years back I fell at work. A couple of weeks later a fairly new employee who did not know me came up to me and asked, "Are you really hurt, or are you just pretending?"
                      Don't they realize that most of us have at least tried to pretend we are better than we are?

                      Ok, yes, I'm a bit hardheaded when it comes to treating myself in a way that I'd chide another for.

                      My seizures started after my second IED hit, but I hid them so I could finish with my team. I didn't want to let them down. (The third IED totally fucked me up and made the seizures uncontrollable)

                      After rehab got me walking again, I tried to get around "normally." I was black and blue all over from falls and I walked like a drunk, but it took my wife yelling at me for being so pigheaded and stupid to get me to start using a cane and a walker.

                      I wanted so badly to try and hold on to what I had. I hid problems from others and especially doctors. I tried not to speak at all so people wouldn't realize that I couldn't speak normally. I wouldn't use my meds.

                      I was bloody minded, pigheadedly in full-blown self-fucking-denial.

                      And when I finally did reach out for help, when I finally realized I was destroying my quality of life (and seriously straining my marriage), when I admitted the problems to my doctor, I was diagnosed with conversion disorder. Yeah, its all in your head, you are faking, just get over it, you don't have a problem, get out of here and go do your job you malingerer.

                      And people wondered why being called crazy made me so stressed that I couldn't manage the actual psychological problems I had. Hell, even seeing a shrink in the military culture stigmatizes you badly, no matter how anyone claims it doesn't.

                      I finally got referred to have an EEG. I had definite seizure activity. On the third EEG I had a full blown tonic-clonic. I actually had a doctor apologize after that. I cant really remember what he said exactly, but it was something like "Son, you ain't faking anything. Ain't no one can fake what their brainwaves do. You got a problem and it's a big one." Heh, I liked that old crochety bastard. He had the worst bedside manners, but he was competent as hell.

                      I had a buddy driven to suicide by his doctors and command treating him as a whining faker.

                      I held on as long as I could, trying far beyond my limits to retain as normal a "visible" semblance of normality until continuing uncontrolled seizures resulted in a long slide into total dehabilitaty.

                      I know there are fakers out there gaming the system. But to have a coworker just assume that you are trying to get workers comp for faking an injury is a sad reflection of how the public takes such lies as the norm and doesn't even look past that assumption is enough to make me cry at the state of our society.
                      Played with bombs- No SCI, Brain Damage enough that I require a chair and a caregiver.

                      Comment


                        #71
                        Yup, I'm with Stephen on this one; he's saved my typing out something of an unkind rebuke...
                        Last edited by MarkB701; 4 Mar 2013, 12:04 PM. Reason: spelling

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                          #72
                          Usually the dumb shit that people say regarding disability rolls right off my back. I'm not exactly David Niven (look it up if you're too young to know) when it comes to the social graces. I make my share of faux pas and cut others slack for their peccadilloes.

                          However, I feel no compassion for the determined boor who plows ahead after decreasingly subtle cues to desist. Nor do I spare those who are purposely insensitive.

                          The only real wounds come from the innocents who provide insight into the attitudes that many ABs hold regarding those with disabilities. Obama attempting self-derisive humor by describing his bowling skills as being "like the Special Olympics" would be an example. A recent comment by a dear friend caught me off guard and was hard to shake. She was telling me about the rapid descent into death of an older mutual friend when she opined that "it's for the best, he would have been in a wheelchair for the rest of his life." She was shocked when other friends told her it wasn't a good thing to say to me. Her logic was that she didn't think of me as a person with a disability. Makes you think that for her disability means a life void of anything positive. No, she didn't offend me or make me angry. But I do admit to feeling troubled by her comment. She remains one of my dearest friends.
                          Foolish

                          "We have met the enemy and he is us."-POGO.

                          "I have great faith in fools; self-confidence my friends call it."~Edgar Allan Poe

                          "Dream big, you might never wake up!"- Snoop Dogg

                          Comment


                            #73
                            Originally posted by Foolish Old View Post
                            A recent comment by a dear friend caught me off guard and was hard to shake. She was telling me about the rapid descent into death of an older mutual friend when she opined that "it's for the best, he would have been in a wheelchair for the rest of his life." She was shocked when other friends told her it wasn't a good thing to say to me. Her logic was that she didn't think of me as a person with a disability. Makes you think that for her disability means a life void of anything positive. No, she didn't offend me or make me angry. But I do admit to feeling troubled by her comment. She remains one of my dearest friends.
                            I'm reminded of a time I went to a good friend's apartment for the first time to help her with a graduate school project. We entered her office and without uttering a word she brought over a roll of brown paper from the corner of the room -- was it waiting there for me? -- and began to lay down strips of it over the rug so that my tires wouldn't dirty it. I handled this calmly making a concerted effort not to embarrass her. It was weirdly insensitive but not malign. She didn't intend to insult me. She would be horrified if she knew it was an offensive thing to do. It was one of those moments (and they don't happen that infrequently) when I said to myself, "That's a first."
                            stephen@bike-on.com

                            Comment


                              #74
                              Originally posted by IsMaisin View Post
                              Yeah, its all in your head, you are faking, just get over it, you don't have a problem, get out of here and go do your job you malingerer.
                              I had completed a master's degree in counseling and had begun a doctoral program in counseling psychology but was undecided about continuing with it. I started to see a psychologist (a provider on my insurance plan) to explore my concerns. I had only seen him a handful of times when he made remarks about my "phobia" concerning work and that I was "malingering." The profound obtuseness of his analysis aside, using professional jargon to a counseling client, even one sort of in the biz, is HIGHLY unprofessional and an immediate rapport killer. This on the heels of a shrink I had seen decades earlier who in the middle of a session declared, "You know, you're not the only one with problems." Moments later she revealed that her island home in the Caribbean had just been damaged by a hurricane, so it was hard not to sympathize. Boo-fucking-hoo!

                              Psychologists. Be afraid, be very afraid.
                              stephen@bike-on.com

                              Comment


                                #75
                                Originally posted by stephen212 View Post
                                I'm largely immune to people's questions and comments, not all of which I necessarily find offensive or off-putting. If you get upset by these things -- and, sorry, there is choice in the matter -- you're going to be in for a very long and bumpy ride. People are people and that includes us. Shit is dripping out of peoples' mouths constantly. When are you/we going to stop paying such close attention? When are you/we going to decide not to be anticipating and ready to pounce at the next perceived insult? It's not healthy to be a half-picked scab ready to be peeled raw again by someone's less-than-enlightened or flat-out idiotic remark. Besides, are we all SO sensitive to and SO informed about other peoples' suffering? Hey, not to go full-on Buddhist here, but cultivating self-compassion (first) and then compassion for those we deem benighted helps ease the suffering (ours first, then theirs). Suffering is a psychological add-on to genuine pain.

                                Now using the wheelchair stall in the bathroom or taking up the HC parking spot is another matter altogether. These people should be put down.
                                well said
                                Donnie: Dr. Xiao, What are your thoughts on a cure/combination therapy for SCI's??
                                CG Xiao: Donnie, I don't want to disappoint you, but I think it is impossible to restore the continuity of the cord or "bridge the gap" in the near future, let's say: 50 years. Dr Wise Young has been my most respected scientist in SCI. He has dedicated and contributed to SCI no other can match.

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