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Thread: Your Pre-SCI Knowledge Of SCI

  1. #31
    Quote Originally Posted by gurly2356
    If you ask me not being able to feel or walk, alone is just HUGE. You say, maybe we should let everyone know about B&B so they realize just how much we go through. I think just telling someone you can't feel or walk is like HUGE and should tell them right there how much we deal with.
    I couldn't disagree with you more. "Oh, you can't feel and have to sit down all day. How big of a deal is that. I work construction all day, don't get to sit down and my legs hurt today." is something I can see people saying or at least thinking. I have had people say, "If you can't feel anything, how can you be in pain?" Well I can feel and it does hurt...a lot. "Really? Wow, I didn't know that." Then if I talk about the B&B people say that they had no idea. If you just can't walk and can't feel people don't really think that's such a big deal. I think that everybody needs to be informed. I wouldn't roll up to a stranger and blurt out, "I have to stick a tube in my pee hole and my fingers in my butt to go to the bathroom!". However, if the conversation goes to what we have to deal with I had no problem with that. I plan on informing the public about all aspects of SCI life in about three weeks and B&B is included.

  2. #32
    I'm paraplegic (thanks to a drunk driver) and was swimming yesterday. I remembered swimming as a kid and trying not to move my legs, wondering if my paraplegic mom could swim. She had a diving accident, in 1958, 2 yrs. before I was born. Whatever accesiblity problems I have, I know she had so much more. I really didn't understand all the frustrations she had, even living with her. She died of a heart attack/ sleeping pill overdose when I was 11. Doctors gave her those and valium for pain. I guess Pain management has made SOME progress.
    Anyways, what I did know is that there are differences between people in wheelchairs. Not everyone is sick or weak or are there temporarily. I knew that some people in wheelchairs could still drive and take care of a household and themselves. What I didn't know until I felt it myself was the frustration of not being able to physically express, anymore, so many things that I am and feel inside and the loss of people knowing those parts of me.

  3. #33
    Senior Member lynnifer's Avatar
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    darlagee22 ... what an experience that your mother was a para too ... unbelieveable and brutal

    I was 12 when paralyzed and all I can remember before that is wanting to stare and touch while out shopping and my mother pulling me away. In grade eight, they had a woman come to my school (my first year of paralysis) who had slipped on some cellophane in her kitchen and lost every limb save for one because of blood clots - if I remember correctly. Did I ever feel self-concious as the only one in a small town in a wheelchair ... let alone the school auditorium. I still couldn't relate then. It took a long time ... years ... and sometimes I still can't believe I'm 'disabled.' My sister accuses me of not knowing that I am ... whether that's a good thing or not ....

    It wasn't until my late teens that I discovered there was a first cousin who had an extreme form of cerebal palsy and had been institutionalized almost her entire life. Now the Liberal government here in Ontario is dismantling that institutionalization and my cousin will have to forgo her daily activities (entertainment, crafts, music) for a group home full of strangers at more than fifty years old. I've seen her once - more than twenty years ago when I walked. Come to think of it, she wasn't at either one of her parents' funerals. My family was just weird ... they're getting old and dying off now though. lol -

    This is an interesting question and I just asked the shadow that never goes away (idiot) ... and he said he thought when he saw someone in a wheelchair, "Oh wow, I'm glad I can walk," which of course caused a disagreement as I called him a jerk for saying such a thing ... as if to say sorry about YOUR luck buddy! Men are jerks ... but I digress ... *sigh*
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  4. #34
    I have to say that before I was hurt, I knew a bit about paralysis (not nessecarily sci) but I did not understand the emotional impact it can have on a person. The emotional part of sci can be just as bad as the physical, imo.

    In high school, I met Sabrina (she joined yearbook & was in my group) and we became instant friends. She has spina bifida. I never knew the 'personal' stuff, but I saw her get frustrated with inaccessibilities, carpet, and going places. We took a yearbook trip to the plant in KC & she didn't want to go because she thought it would be a hassle. In the end, we all loaded onto an accessible bus because we wouldn't take no for an answer. I think she thought that 'she' was a hassle, which definitely wasn't the case.

    I've known a few other guys who have SCI, but they don't like to talk about it. That was before I got hurt! Now they won't hardly even talk to ME! Maybe I remind them of their own reality or something? I don't understand it. I never realized that maybe they were (and still are) severely depressed about their situation.
    If there is light
    it will find
    you

    --Charles Bukowski

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