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

  1. #1

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

    So i'm hitting this point in my post-injury life where I frequently engage in a conversation that goes something along these lines:

    I say: "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."

    Ab person says: "Good to hear, so you'll be back to your usual self sometime next year then?"

    What I want to say: "Well, it's not that simple. Obviously I'm hoping for the best, but there are going to be very harsh consequences to what happened to me and to a certain extent I'm looking to fundamentally change my life because what I was pursuing before is simply not feasible now."

    What I actually say: "haha, hopefully"

    Ab person walks away feeling hopeful that I'm going to beat this condition and I hobble away with a renewed, aching sense of despair over a lost life.

    I don't blame them for trying to be encouraging. I'm sure that I would react the same way, were the roles reversed. I guess I'm just looking for strategies on how other incompletes manage the public relations conundrum of trying to be realistic with people about what your prospects are and not seeming to be a sad sack at the same time.
    L2 incomplete with a pretty bad limp since 10/31/2011.

  2. #2
    Senior Member
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    Well, I guess it depends who do you speak with. If the person is remotely close to you honesty is the only option. I, for one, am usually brutally honest. Some people get really awkward after that but i got used to it. Its better to be straight than to disappoint later down the road.

  3. #3
    I'm not incomplete but I always try to put the other person at ease. Like oyu said, it's their perception of how they would feel in this "Condition"

    I usually say something along the line that I really appreciate their asking; and I continue to maximize my potential with what I have left. If I get more return that's great, if not, trustfully, I will continue to be my usual self.

    No use saying something negative even though you may want to. You're right, we would probably react the same way. It's natural. Main thing for me is to stay positive. How we react will influence how they react to the next person they come in contact who's in a chair or disabled.

    We did a show for the Variety Village, Jerry Lewis, Telethon in Vancouver back in '73. We met a group of SCI's backstage. I remember a conversation, after they left, about "I'd rather be dead than be in a chair." It was ackward meeting someone in a chair for the first time.

    A couple of months later I was injured. Those same guys ended up being my mentors and showed me that it was good to be alive. They backed me up and still do on occasion, while some of the guys I worked with never even visited once after I was injured.

  4. #4
    Senior Member lynnifer's Avatar
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    Quote Originally Posted by Patrick Madsen View Post
    "I'd rather be dead than be in a chair."
    I've heard this so many times ... it's so insulting! I usually reply with, "Yes you would. Because the other choice is death." End of convo. lol
    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

  5. #5
    Dude, I totally understand where you are coming from. I have been injured for 10 years. I am not improving. I can stand up with forearm crutches and if I am just standing there, I don't "look" disabled (except for the crutches). People say - "wow , you have recovered"
    They have no idea about the daily pain, 8 hours in a wheelchair at home, bowel , bladder, NP pain, how hard it is to do a simple errand, etc....

    Listen to Patrick Mad, and Lynnifer - they are pros at this game. Patrick posts always positive. Lynnifer calls it like it is.

    Just the other day , some one asked me how my "recovery" was coming. Recovery? After 10 years? Are you out of your mind? This is it. I am a 55 year old trapped in a 90 yo body. This is it.

    It is just the way it is, shveddy. You are what you are. You lost the AB life. I don't know how incomplete you are but ABs will never understand what SCI does to you and good for them. I wouldn't wish this on anyone.

    It is okay to go negative here. Just do 3 positive posts for every negative ;-)
    I have been mr. positive around here but have admittedly been struggling over this 10th anniversary from last month.

    It is all about getting over the loss and moving on. The sooner you move on the better for you so you don't waste precious days with regret.

    If this happened 75 years ago , without modern medicine, you probably would have been dead.

    Your avatar is still you as an AB. The loss is hard to take, but listen to Patrick's wisdom.
    Last edited by arndog; 03-16-2012 at 01:58 PM.

  6. #6
    The people that really get under my skin are the ones that tell me I just have to work hard and and believe....right. I'm 29 years post, C6/7 complete. Guess I must not have...duh!

    All the best,
    GJ

  7. #7
    Yep. I'm not one for sugar coating so I just say "this IS better - do you know how long it took me to get HERE?" which gives them a little better understanding.......
    Again, people are afraid of SCI (rightly!) and as such do not take time to learn anything about it.

    Funny about the AB comment - "You're lucky to be alive" to your face but "I'd rather die then be in a chair" if you are thought to be out of earshot.........

    Shake it off, Arndog - I don't want to hear it but at the same time i co-miserate with you as well - get into a blue rubber duckie & float your worries away - plus, don't you guys have snow now?
    - Steve.

  8. #8
    Quote Originally Posted by lynnifer View Post
    I've heard this so many times ... it's so insulting! I usually reply with, "Yes you would. Because the other choice is death." End of convo. lol
    To be honest, I used to think the same thing. And most of my friends still think the same way. Which is ironic considering they're one wrong move away from an SCI on a daily basis. My favourite is when my friends tell me, 'I don't think anyone of us could deal like you've done.' I always take it to mean, 'It couldn't have happened to a better person!'

  9. #9
    Senior Member flying's Avatar
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    People are aways telling me, if anyone can walk again its you. Even my surgeon says it. I'm tired of saying how much it depends on how much the nerves come back, and that there is not a damn thing that one can do about that. I'm not that spacial, in the SCI world anyway. Just because I workout all the time, and have a fairly good outlook on life, does not mean I'm going to have a miraculous cure. O, and people telling me that the mind, has so much to do with ones outcome. When I say that I doubt that the mind can cure a SCI, that by thinking this thought or that thought one can repair the SP, they just are just not convinced. Well on with life.
    Arndog hang in there. After all your my hero. If I can gimp around half as good as you, on those arm crutches, I would be happy. Wow how ones goals in life changes. Specking of goals. A was talking to Friend of mine, who has two types of cancer. He was so happy that after tons of chemo and radiation, he could make it up stairs to his own bed. I told him how I was trying to go 150 feet on arm crutches. After the comment of how are goals have changed, we just laughed and laughed.
    I guess one can just say, this is as good as it gets. Now lets talk about something else.
    T12L1 Incomplete Still here This is the place to be 58 years old

  10. #10
    Quote Originally Posted by shveddy View Post
    What I want to say: "Well, it's not that simple. Obviously I'm hoping for the best, but there are going to be very harsh consequences to what happened to me and to a certain extent I'm looking to fundamentally change my life because what I was pursuing before is simply not feasible now."
    If that's what you want to say then say it, I don't see any problem with it, it's not negative, it shouldn't put them off.. Just be honest.
    Most everything I say is

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