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What do you wish people knew about SCI?

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  • #16
    that i miss full function of my hands/upper body 10 times more than i miss my legs....people never understand that.....


    • #17
      that we're employable.
      A dolla makes me holla, honey boo boo! - borrowed from Honey boo boo child


      • #18
        That it affects everyone immediately involved with the SCI person. Everyone will have a new set of emotional/physical circumstances to deal with.
        Arlington Cemetery is full of soldiers—the presidents buried there are few and far between. -Rusty VanReeves


        • #19
          Because of sci my ass burns like a sausage cooking on a grill, and marijuana enables the pain to disappear for 2 weeks.


          • #20
            Originally posted by SoulMate
            That it affects everyone immediately involved with the SCI person. Everyone will have a new set of emotional/physical circumstances to deal with.
            Can you elaborate on this topic SoulMate?


            • #21
              That our condition needs to be cured as urgently as other major medical conditions


              • #22
                What I would want the world to know if ..

                ..I had the opportunity to impart my message?

                > Just because I may be in a wheelchair, it doesn't mean I'm retarded. Does my atrophy suggest I still cannot have a sound mind? No matter pre sci I was educated, and quite accomplished in the business world. Save but a few nerve cells, I'm not any less human than you. You can speak directly to me, not my caregiver! Most of my caregivers can't even fucking understand English! Insult atop injury.

                > For all those 'well wishers", stooooop fucking saying "at least you survived' ,
                thanks guys! that really fills me with gratitude every hundred times i hear it. Guess what, this is existing, not living. I'll trade places with ya!

                > Because of our injuries our sex equipment may not perform like yours, but our desire and libido is still fucking with us!

                >Caregivers; please, treat us like you would want to be treated. We are fucking humans.

                > Moms, dads; no need to shield your kids from us. We are not space aliens, our cargivers are most likely aliens of another kind though. We do not represent a threat to you, or your kids because we are in wheelchairs. It's not a condition that you can catch by being within 10 feet of us. Your kids can look at us, in fact, let them talk with us and ask questions, we don't bite! We more often enjoy a chuckle with your kids showing off our powerchairs. In public, you adults either seek to dote on us, or go out of your way to ignore us.

                > Of course, please stop asking about our recovery by blurting; "what do they say?" who is 'they' and what does 5 years in a wheelchair so far tell you?

                > Stop telling me about the wonders of stem cells. I likely know more than you. I don't knock church goers, but don't preach that 'those stem cells' will cure me soon, but then contribute $ to the very vocal, anti-esc zealots each sunday. stupid fucks!

                > Yes, CR was a superman, and more so than you'll ever even appreciate!

                > Am I bitter about my chronic sci, fucking right! Because there's no excuse for it. You have the technology, stop wasting the $ on useless wars and orbiting the earth and the "cosmos" mr Bush.
                What a waste of my contribution to my family, myself, my community, and the economy!

                to be con't


                • #23
                  Originally posted by lurch
                  That wheelchairs are uncomfortable bloody things.
                  Well, they might be if you can feel yours (I can't feel mine!).


                  • #24

                    TIM C said it all for me. no need for me to type it again. thank you tim. anty
                    For every minute you're angry you lose a second of happiness


                    • #25
                      I wish some people did know more about SCI. I compare it to a lost limb although it’s inside the body and you can’t see the damage it does. I was in a newspaper here lately urging politicians to fund more research on stem cells. After that I have received a lot of telephone calls, from all kinds of people. All of the calls were positive in some way but some was totally lost. One woman phoned me and told me to attend on an evangelical meeting this weekend. If I wanted to be cured it was just for me to drive the five hours drive there and then I would be able to walk after that (it was some American evangelical pastor that would be there). She guarantied me that? I was not rude with here but off course discussed with here. I told here how I looked at SCI, the lost limb inside theorem. I asked here, has anyone with an amputated leg or arm have got those back just because of attending such a meeting. She could not answer that. I told here it is the same if the damage is outside or inside the body. - Instead she told me that last weekend there was a woman paralyzed for fifteen years in a wheelchair that attended the meeting. After the meeting she could walk normal and she was able to roll here wheelchair out from the meeting be herselfe? I told here that that sounded a bit strange. I also asked here if such things could be documented. She only told that people had seen that and that was documentation good enough. There was also a doctor who had said that this was true – so thereby it was true and documented? Well I continued to stress that this was not documentation as such. And I also tried to say that such documentation could be obtained if MRI shows damage to the cord before such a meeting, that it should be easy in general to document this. I also told here if this was a fact, if she did not think that all the airports in Norway was jammed of airplanes carrying SCI peoples here from the whole world to have this “treatment”? She could not answer that. Well, she was kind and tried to help. But I was thinking after the phone call and discussion if she not only phoned me (I am mentally strong and can deal with all kinds of peoples and my problems) but other peoples in much more difficult positions that I’m in. I was thinking that such behaviour can hurt some people if she is calling every person that has serious illnesses?


                      • #26
                        We can't be done already. I still have over 2 weeks. Keep them coming.


                        • #27
                          I wish that some people realize that just because a person is in a different position in life, like sitting down, that they are not "retarded".
                          Just for starters....