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Thread: How to say that I'm not going to get better

  1. #11
    Senior Member trekker6's Avatar
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    Until my injury I didn't understand quadriplegia or paraplegia, I just knew I didn't want to be one. Now we know more than we wanted to, the b & b problems, spasticity and spasms, the pain, the constant tingling or numbness, the learning to do the simplest things which are now a chore. So when I tell strangers that I'm an incomplete quad, they say it's a miracle, a quadtiplegic who is walking and I explain to them that it's not, that half my muscles only work when I get cold or move them and I have to fight them for every step I take, every movement in my arm makes, it's not their fault and I'm glad they don't know, who would wish any of this on anyone and I'm not a complete quad. My old life is gone and I work on making this new one better. I'm always cheerful when I talk to them, cause I don't need nor want their sympathy.
    "Would you rather reduce deficits and interest rates by raising revenue from those who are not now paying their fair share, or would you rather accept larger budget deficits, higher interest rates, and higher unemployment? And I think I know your answer." Ronald Reagan"

  2. #12
    When I was first injured back in 89, the mother of a Chinese friend of mine made a point of coming up to me every Sunday in church (for 2 years) and insisting that I go see her acupuncturist. I explained to her each time why I was in the state I was in and even had her son try and explain the deal. It never worked. While I don't see her as frequently as I use to she is still pushing the acupuncturist to this day.

    In this case a woman heard what she wanted to hear and disregarded the rest. I guess some people's beliefs won't allow them to accept that sometimes things just don't get any better.

    With that said and to answer the OP's question, I don't know the best way how to tell folks that this is it other than to just tell them like it is.
    Last edited by Patton57; 03-16-2012 at 12:59 PM.

  3. #13
    People don't get it and I'm in the same boat. The truth is I'm about as good as I going to get. People want to hear I'm making progress and I tell them I am, but going into the whole explanation just pisses me off. They're just not going to get it, and if I try they look at me like I'm some kind of whiner, plus who really wants to hear that I sleep little because of shocks, and dig turds out my butt with my finger.

  4. #14
    Senior Member trekker6's Avatar
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    I had to dig one out once, it was hard as a rock and was stuck, had to break it in pieces, my hand was covered in blood, scared me to death, I don't tell abs that story, they'll be running once I start!
    "Would you rather reduce deficits and interest rates by raising revenue from those who are not now paying their fair share, or would you rather accept larger budget deficits, higher interest rates, and higher unemployment? And I think I know your answer." Ronald Reagan"

  5. #15
    Senior Member brucec's Avatar
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    Quote Originally Posted by shveddy View Post

    "yea, all things considered I'm doing well. I can walk with crutches just about anywhere and I'm working hard to get more back."
    just add "someday" to the end of your sentence
    We must reject the idea that every time a law's broken, society is guilty rather than the lawbreaker. It is time to restore the American precept that each individual is accountable for his actions.
    Ronald Reagan

  6. #16
    Steve - thanks for the kick in the ass (even though I won't feel it - haha). That's why I like care cure, there are enough positive people like you to keep one on track. SNOW.... It has rained 4 days in a row, really bad snow year for the northern sierra. I will go get the duckie, okay. Thanks, Bro.
    Flying - hey thanks for the nice comments.

  7. #17
    Quote Originally Posted by trekker6 View Post
    I had to dig one out once, it was hard as a rock and was stuck, had to break it in pieces, my hand was covered in blood, scared me to death, I don't tell abs that story, they'll be running once I start!
    When they get that big I use a stone chisel and a mallet. O.k. never had one that big...Damn that must have of hurt!

  8. #18
    Of course an AB isn't going to understand SCI. People who aren't ill or directly living with it don't understand cancer, either or Parkinson's or strokes or MS. That doesn't make them clueless. They just aren't in our shoes or on our wheels. For all the frustration that it can cause, I believe that inquiries into our health and future prospects are probably driven by sincere caring and hopes for the best. People want to hear that we are improving, that there is hope that we can return to the bodies we once knew.

    We know that isn't possible and we have company in that knowledge, right here on this site. When I tell my friends that I walked a mile, they are overjoyed and expect that the next mile will be even better. But you all know how hard that mile was and how hard the next mile is likely to be.

    When questioned, I try hard not to be snappish or impatient. To the frequent question of how 'well' I'm likely to be, I say, "Heck if I know". Then, turn the topic to something else that we all can understand.

    It's understandable to mourn our prior lives and capabilities. They are gone. At the same time, we have lives to lead and futures to look forward to. I don't believe in wasting my time with too many regrets.

    For Shveddy, especially, it is a tough time for you right now. Your injury is fairly new. You're probably at the impatient stage of wanting to know how things will end up. You're working hard and not seeing the physical response that you're used to. Still, you have every reason to be hopeful. You have quite a bit of mobility at this early stage and are likely to continue to strengthen. Don't give up yet on the dreams that you once had for yourself. Recovery from SCI is a long journey and you never know how things might come out for you.

    I wish the best for you, I really do.

  9. #19
    Senior Member Cjt8's Avatar
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    It's just that it's impossible to really explain it and to truly understand it you need to live it, feel it. A care giver or spouse, yea, but shit, even my dad thinks I'm going to get better. They just don't fucking get it and you know they never will. If they could get it, a cure might be a bit closer.
    All right enough rant!
    Remember when you first got your skis to come together?
    Your first wheeliee for a good distance?
    Getting the wheels up on top of the sand?
    The first second of the first jump?
    The first time you pulled back on the stick?
    The first time you got on the back of a horse?
    Well untill you do it, you really don't get it.
    Same with SCI. Now get back to work! I have to go and help Steve cut some trail.

  10. #20
    arndog - yea, I know what you mean. I'm fairly similar to you in terms of capabilities. For a spell, I can fake having a broken left leg or some other minor inconvenience. Which is why people think I'm a few months from my old self, I suppose. I am trying to get over my old self, I guess that I'm trying to get the info out to everyone else as well.

    haha, I don't need to tell others everything shitty about my situation (in a literal sense)... I just need to start letting on that things are going to be very different without feeling like I'm such a downer. It'll probably be a long process.

    Truly - Yep, you've about summed it up. I'm extremely impatient and on one hand I want to get to the point where I know the cards I've been dealt but of course I also want to keep improving. Though, I'm afraid I do have to give up on most of my dreams. They are generally incompatible with a giant box of catheters and poor reflexes or spatial awareness...
    L2 incomplete with a pretty bad limp since 10/31/2011.

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