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  • How often do you think of the cure?

    I have to say after reading some of the active threads lately I wonder how many people live for the cure.

    How often do you think of the cure?

    Honestly, the only time I really think of it is when I read posts here or when others ask me if I'll ever be able to walk again. It is then I explain the 'if and/or when' surrounding the research going on.

    No, I'm not a career-crip or whatever.

    Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash
    Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash

  • #2
    i live each day as much as i can. some days that's not much.

    i don't think of a cure at all. not for me. i think of what i can do to make things easier/better for me now.

    i have no doubt someday nobody will have to live the sci life again. but living for a cure, imo, is wasting time. i'm not talking bout working for a cure being a waste of time (obviously it isn't)...but living for it is.

    somehow i knew 18 yrs ago this was it for me. i grieved for 2 yrs. now i am too busy living. 2 yrs was long enough, don't ya think? [img]/forum/images/smilies/wink.gif[/img]

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    • #3
      What is a career-crip? I have not seen that one before.

      This site gets me thinking about stuff like the "cure". It plants a little question in my mind and I think, "I didn't know that was even close to being possible." So I do a little research. Partly because I am addicted to information and partly because I have a vested interest in finding out if a cure is possible. I did not know that there were drug therapies trying to get nerves to grow, and I had no idea how stem cells are supposed to help. I, like most people were told that nerves don't grow regrow or fix themselves. Now that I find out that this could be untrue. I try to educate myself and those around me. I think about it and I talk about it sometimes, but I don't obsess about it or count on it. Mainly because think that if a cure does come, it will be too late in my life to substantialy improve the quality of it. I keep my fingers crossed and try to keep fit in case I am wrong.

      I think that this is an interesting question. Just from reading posts you can tell that there are some people that rarely think about it and some that have made it their very reason for getting up in the morning.

      And that's all I have to say about that.

      jOE
      jOE
      www.nwiscig.blogspot.com

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      • #4
        that's a bit hard to measure, isn't it? strangely enough I don't think about it all that often

        And, I don't know what a 'career crip' is either - I just repeat the stupid phrases other people use - there are others like 'crip culture', 'disabled community' and 'crip humour' - I mean, WTF?

        Well, I'm just me and I'm just as much an individual now as I was before SCI so I'm not joining any 'SCI club'

        I think about Nov ALL the time though LOL

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        • #5
          I don't think I thought enough about it. If that makes sense. What I mean is, I got caught up in living life, which isn't a bad thing. But because I decided I wouldn't walk again, I didn't do as much for my legs, and my back as I should have. I think it's healthy to think about it once in awhile, if it means you'll be taking care of your body in preparation for whatever may come. If you let it consume you though, life gets a little harder to live.

          I'd give anything to walk again, and I'll work hard to keep my body in shape, but I won't put my life on hold either.

          I'm 22, and I have no idea what will happen in my lifetime.

          ~And in knowing that you know nothing, that makes you the smartest of all- Socrates~

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          • #6
            I read career-crip for the first time today...not sure what it really is but I know I'm not it [img]/forum/images/smilies/smile.gif[/img]

            Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash
            Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know that, so it goes on flying anyways--Mary Kay Ash

            Comment


            • #7
              I think the general public is in total denial over the issue of SCI's and the need for a cure. Until it happens to them or someone close to them, most people don't want to think about it. In addition, there is also a hidden notion that somehow we (those of us with SCI's) have a self-inflicted wound and maybe deserved what we got.

              A cure would be a wonderful thing, but will it make that big of a difference for many of us? Muscles that have atrophied and bones that have lost strength from years of non-use are never going to return to fully normal function unless your injury was very recent. In my case, 3 stage 4 ischial pressure sores and 3 flap surgeries and grafts have totally disrupted the muscle structure of my left leg. Walking on one leg would be a huge improvement over my current condition, but I have zero hope of ever fully restoring my former life.

              So I don't spend any time thinking about a cure. If I could do something to further the development I certainly would, but I see it as being totally out of my hands. My preference is to concentrate on making the best of the function I still have and not worry about cures. If it happens - great - but I'm not going to waste my time wishing and hoping.

              "Some complain that there are thorns among the roses, but I am delighted to find an occasional rose among the thorns."
              "Some complain that there are thorns among the roses, but I am delighted to find an occasional rose among the thorns."

              Comment


              • #8
                Don't think of ot often until I read stuff here. I'm 25 years post and doubt I'll be up anytime soon. I do ;however, support any activites that would benefit others. Fundraising, letter campaigns re: stem cell research, etc.

                I'm not sure what a career gimp is (is that even the term, LOL!). I just live my life as best I can and try not to dwell on the the fact I am no longer an AB.
                Get involved in politics as if your life depended on it, because it does. -- Justin Dart

                I shall not tolerate ignorance or hate speech on this site.

                Comment


                • #9
                  Maybe a career crip is a crip with a career.
                  Who makes up this stuff BTW?

                  I must be a very naive, pollyanna, lamebrained old lady..but I believe there is
                  most definately a way through science of alleviating the affects of paralysis.

                  I see miracles in everything so maybe it's just me.
                  But to think about it in respects to me..No
                  I don't..but to think about it in respects to
                  humanity..yes often.

                  Help is on the way.
                  Life isn't about getting thru the storm but learning to dance in the rain.

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                  • #10
                    When i read the posts here,when im angry and when im laying on my back with my chair on top of me.

                    ~We must save the princess,or die trying~..Mickey Mouse

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                    • #11
                      i think being optimistic is key. i just keep hope alive for my fiance and family. ill never give up hope because a type of cure is coming but not just yet. everyone should believe that a cure is coming but its going to take some time.

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                      • #12
                        Every time a beautiful woman walks by. Everytime I see or hear a motorcycle, or the crashing surf. Everytime a perfect Saturday rolls around and I spend it alone watching football.

                        R
                        www.rustyreeves.com

                        Comment


                        • #13
                          Great thread Novie. I hope a parent's perspective is welcome.

                          How often do I think of the cure?

                          Let me BEGIN to count the ways.

                          Every time I see a public restroom that is not accessible, I think of the cure.
                          Every time I see a public restroom that can be accessed but which has no stalls large enough for a wheelchair, I think of the cure.
                          Every time I see a public restroom with no hot water tap for cleaning urological supplies, I think of the cure.
                          Every time I see a public restroom without a sink large enough to hold a portable urinal for the purpose of cleaning it, I think of the cure.
                          Every time I pay out of pocket for touchless caths that Medicaid will not provide in California, I think of the cure.
                          Every time I see a curb that is not cut, I think of the cure.
                          Every time I see a curb cut that looks like a ski jump, I think of the cure.
                          Every time I see a kid with a clunky heavy Medicaid wheelchair, I think of the cure.
                          Every time I visit a private residence that has steps up to their front door, I think of the cure.
                          Every time I am outside and it is raining or snowing and my hands are dry in my pockets, I think of the cure.
                          Every time I see a handicapped parking space, I think of the cure.
                          Every time I see an AB person use a handicapped space, I think of the cure.
                          Every time I see someone on the side of the road fixing a flat tire, I think of the cure.
                          Every time I replace a burned out light in a ceiling fixture, I think of the cure.
                          Every time I type using BOTH hands, I think of the cure.
                          Every time I open the cupboards in my son's apartment and see the top two shelves are empty, I think of the cure.
                          Every time I see Wise on Care Cure at 2am, 6am, 1pm, 5pm, and 11pm of the same day, I think of the cure.


                          I could go on for many many pages but I think you get the point.

                          I think of the cure everyday. But I am not obsessed or hung up on the cure because I feel pity for my son or any others I have met. I think of the cure because it is possible and these indignities are unnecessary.

                          John

                          [This message was edited by john smith on 09-14-04 at 06:04 PM.]
                          "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

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                          • #14
                            I think about how it would be nice if there was a cure, or even a visible track towards that goal, but in my mind so far all that I see is the fact that it is a downhill from here for me. I guess it kind of really sucks to have my life cut short so early in life, and be in some bizarre limbo between life and death (anyone ever think of the stuff below your injury as some living corpse you drag around?). In the meantime I try to piece my life back together and slowly become accustomed to this BS if that ever could fully happen. Live for the cure? I would have a rosier outlook on this subject if we still werent having debates similar to if the earth is flat debates from the middle ages when it comes to possible avenues of cure research. That and a insignificant amount of research being done in the first place kind of puts a damper on my living for a cure.

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                            • #15
                              i think about the cure every day. it doesn't consume me to the point where i don't live my life, but like my dad said, i think of it because all of the indignities of SCI are unecessary. the science is there, funding and public awareness are not. there's no longer a good reason for us not to think about or advocate for the cure.

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