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Thread: scared

  1. #1
    Senior Member grommet's Avatar
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    scared

    I'm pretty scared right now about my shoulders. I can't go back to a powerchair, now now, not yet. Please let this get better.

    Nothing used to scare me more than not being able to use my hands. It's funny, it's been long enough now since they gave me trouble that I forgot about that fear. Now it's my shoulders.

    My body scares me.

    Things are so good, I have so much and I couldn't be luckier. But my body isn't good and it plays tricks. It's selfish to say out loud here, but I've wished many times I could just have one thing wrong. Give me one big thing and don't let it change and I'll live a good life. But disability isn't like that.

    I used to listen to Blindkiss, a radio show from London about being blind. It was very funny and poignant. No pun - dark humor. One episode was the two hosts getting drunker and drunker during the show to test the idea of getting blinder. That's funny. One host, Sarah, well I had a crush on her. So many guys around the world did. I listened to every show and even wrote in once and they read it on air.

    Sarah died in her early 30s. I was totally shocked when I heard. Apparently many people who are blind have something that caused the blindness and it remains a threat to their health. Blind wasn't enough for Sarah's body, it needed to kill her.

    Sometimes this shit just isn't funny.

    The best sailor I ever knew (I'm a sailor) was a C1 quad. I never saw anyone, abled-bodied or disabled sail like that. He moved the boat like it sailed through lighter water and it was a ballet. He could make it do anything and the guy was tough and brave. He lost the joystick controlling the servo steering from his grip. His head fell sideways and it slipped out of his mouth. The 12 foot dinghy raced at full speed right by me and into a concrete overhang that let the bow go under and the jib mast take the blow and spring back like a cartoon. A few minutes later, after the crew had him running once more, he was sailing again like nothing had happened. It took a couple of hours to get him into a boat and he needed his head supported with a dowel across his shoulders. Tough tough guy and beautiful sailor. He had ALS and he lived everyday he had it. Losing a little more and a little more he finally passed away.

    What have I got to complain about? Geez I'm well off. But .. things hurt and, why is everyone braver than me? Why am I such a shit?

    A pity-party I guess, but out loud. Sometimes I don't want to write but then I think about how much something some one else wrote meant to me. They didn't even know. So tonight I'm writing about my fears. I don't mind the pain, I'm an expert in pain. Got it down. But fear? Fear of losing control? I don't know what I want anymore. One thing gets better and then I want more. Apparently I am not enjoying this disabled thing ;-)

    I guess all you have is yourself, your sense of yourself. The rest may be incidental. But all pretentious or mundane (you pick) wisdom aside, please please please let me keep my shoulders. Please don't take them away. I'll do the powerchair again, I know I will, but not yet, not just yet. Give me five years, ten maybe? How about giving me my fucking life back? Okay too much. Okay, forget about my shoulders or any amount of time, just give me the guts to be happy no matter what. Give me that or show me how to learn to be like that and I won't ask again for anything else. Geez how does everyone else do it?

  2. #2
    you'll be ok. a power chair, for me, when i chose it for my lifestyle opened up a lot of new opportunities. it was freedom. it still is. i hate how powerchairs are often portrayed as meaning one has less ability. it's just the opposite to me.

  3. #3
    Quote Originally Posted by cass View Post
    you'll be ok. a power chair, for me, when i chose it for my lifestyle opened up a lot of new opportunities. it was freedom. it still is. i hate how powerchairs are often portrayed as meaning one has less ability. it's just the opposite to me.
    Very true. For me, I walked with canes/crutches for most of my life. Finally switched to a manual chair. Now I have so much more mobility. Opened up what I can do.

    So I can easily see how the manual vs. power chair could open things up.

    Gimplements as Arndog calls them. Use what works for you and your life.
    Last edited by My395; 12-08-2011 at 02:45 AM.
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  4. #4
    Well said. The step to a powerchair still gets me too. Feel of failure? Didn't try hard enough? I needed it for work as I was headed to more rural areas and just could not push with all the Crap in my lap and my service dog. I've been using a powerchair for over 10th years, I even went to tilt last version another blow to my ego.
    I have no answers as each of us struggle with our own issues no matter how silly or trivial we may judge them.
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  5. #5
    Normally Id shy away from such a long post, but you're a great writer. It takes guts to share that and Im glad you did. I hope your shoulders hold out, but if they don't I get the impression you're much mentally stronger than for what you give yourself credit. I hope you feel more at peace today.

  6. #6
    Senior Member grommet's Avatar
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    I am so relieved, my shoulders are feeling better today. They're not okay but they are better which means to me it isn't some permanent damage, I don't think I've torn anything. This means if I keep resting, everything could be okay.

    Thanks for the support :-)

  7. #7
    Senior Member rdf's Avatar
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    I reckon all folks with a SCI experience the same thoughts from time to time.
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  8. #8
    Senior Member grommet's Avatar
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    Quote Originally Posted by rdf View Post
    I reckon all folks with a SCI experience the same thoughts from time to time.
    No SCI for me, but neurologically I get all sorts of surprises and then there are just the RSI's from using a chair. I get all sorts of fun stuff that scares me. I hear stories from friends with SCI's about weird sensations and nerve pain, RSI stuff and just general postural pain.

    I had a friend with MS who used to become paralyzed when she had a fever. It would terrify her though she would only have it for a day usually. Not having control over your body or wondering when or if something is happening, is scary. It helps a lot to talk about it. A friend with MD, geez he was walking and lifting heavy things when we met, then he couldn't get up at all and some other serious stuff. Friends and laughs help a lot. I always hope it's okay I spend time at CC though the group is for SCI. It's a great place when you need advice or just someone to listen. :-)

  9. #9
    Senior Member rdf's Avatar
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    Everyone is welcome here. It's good to have a place like this whether you're disabled, able bodied, or in between.
    Please donate a dollar a day at http://justadollarplease.org.
    Copy and paste this message to the bottom of your signature.

    Thanks!

  10. #10
    What is in between
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