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Thread: Too stubborn for my own good?

  1. #11
    Senior Member martha's Avatar
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    Momoftwo,
    Glad you've found a place where you feel you can vent among people who understand. Heaven knows we need that! You might consider Jackie's advice to me for yourself as well. It's ALL easier said than done, but I think if we're going to survive we need to take heed. I still think it would be great to have a caregivers "conference" on a nice beach somewhere with cabana boys to bring cold drinks with umbrellas in them, massage, manicure and pedicure on demand, breakfast in bed and being around people who truly understand the other's situation. Dream on.......

    martha

  2. #12
    Senior Member kate's Avatar
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    Everybody!

    Martha, I'm glad you don't feel "bashed". That's sure not my intent, just the opposite.

    Momoftwo, I know what you mean about hanging around with women who do not have disabled spouses. Once I was at a dinner when an old friend started ragging on about how she just can't stand her husband's snoring . . . I thought of the quad-rattle I listen to every night, and the waking up to cath, and the time he fell out of our bed, and I just stared at her like she was from some other galaxy.

    Jackie, as usual you're on the money. The dross and needless bullshit of a marriage gets burned away in the fire of this beast, or else you drown in it. (I'm mixing metaphors here, forgive me!)

    Today is hard. Went to church this morning and I felt suddenly just furious with everybody for the way they rush up to tell him how good he looks, how wonderful it is to see him, how glad they are to see he's getting stronger, blah, blah, blah. Then they sail off to their lives while we struggle down to the car . . . grrr.

    Uh, I think I'm having the massive hormone-driven fit here. Just ignore me, or give me a dope-slap, or something.

  3. #13
    Senior Member martha's Avatar
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    Kate,
    No dope-slap necessary except to all those good people who didn't bother to help you into the car! Our first outing after the SCI was to a wedding. Rainy, COLD January night. We still weren't good at car transfers, it was freezing, we were being rained on, there is no way to hold an umbrella and help someone transfer so I was totally soaked, and everyone just hurried themselves into the church so they wouldn't get wet or cold. After we got inside, we got a lot of "We didn't realize that was you!". Yeah, like how many people struggling with w/c's were at that wedding ----- ONE! And when it came time to leave, there still wasn't any offer of help.

    martha

  4. #14
    I think people generally fall into two categories - the ones who are overly solicitous, who insist on 'helping' even when you don't need it; and those who maybe want to help, but feel uncomfortable doing so. But then, there are always the jerks who truly just don't get it!

    _____________
    Tough times don't last - tough people do.

  5. #15
    Senior Member kate's Avatar
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    clarification

    I wasn't so much talking about needing assistance . . . we struggle down to the car because, well, it's kind of like having toddlers. There's a lot of equipment, and some of it's bulky, and certain doors are hard to negotiate, etc.

    What was getting under my skin yesterday is kind of hard to talk about, especially here. See, my husband is eversoslowly getting back on his feet. He's 18 months post, and we've known for more than a year that he PROBABLY would be getting enough function back to walk with a walker or crutches or maybe someday a cane.

    The process is very, very gradual, physically demanding, frustrating--and also exquisite to witness. He used to be a gangly tall guy with that gawky, adolescent sort of grace. Now he struggles along painfully behind a walker, and the girls and I carry his things and wait at the elevator and hope he doesn't have to use a restroom. We've seen him fall down a few times. I've seen him have the b & b accidents in the most mortifying circumstances, and we're still hoping for more sexual return.

    I feel like a complete jerk even posting about this--PLEASE understand that I know how lucky we are . . . but it's still hell in its own way. What got to me yesterday was this blithe jolly attitude from all our old friends, like, "oh, you're almost better! how cool! see you later!" When I'm looking at another year of clawing our way back into the world. They don't know shit, except they read in the paper that Chris Reeve moved his toes, and they feel all possessive about us, like they're in on the miracle.

    I'm being so petty! Okay, sometimes I just AM petty. Sorry . . .

  6. #16
    Kate~

    I'm sure they're trying to be positive, as if that blithe attitude will make your husband continue to work hard and by golly, get better! They don't have a clue, do they? My daughter was injured right before Spring Break of her senior year in high school. Her first outing was to her graduation ceremony. I actually had someone come up to us, and in a dramatic whisper, declare that once she got to college, and saw all the other kids walking around, maybe she would be motivated to start walking again. As if it's just willpower! She's a T11 complete! I just stared at this woman. The only thing that saved her was that she must have been 80, and I decided she had dementia.

  7. #17
    I think we just have to face the fact that people just don't know about SCI, or for that matter, any major, disabling condition. We intrude on their 'comfort' level, and they just don't know how to respond. Sometimes when we get the 'oh, he looks so great!' line, I think they're just trying to buoy us up the best way they know how.

    We have to remember we're on the other side of the window now; how would we have reacted pre-SCI? We know things most people wouldn't dream of knowing - or want to know! We've seen things that are the stuff of nightmares. We've been through more legal battles, medical battles, insurance battles, than most people would see in a lifetime. And we've emerged. Different people; stronger? Yes. Better able to deal with the b***it? Yes.

    I remember a few years ago, Christopher Reeve was on Letterman, and Letterman was asking him some intense questions. Finally, he leaned back in his chair, looked at CR, and said, 'You know, you've been places none of us have ever been'.

    We've been to those places, too, as caregivers. Through the flames and out the other side. We can't expect John Q. Public to even begin to guess what our lives are like; I would dare say we wouldn't want to share it with them if we had the chance!

    I hope that the CR special on tomorrow night will open the doors for the public to begin to glimpse a view of what life with SCI is really like.

    When people make comments on CR's progress, my comeback is yes, and you can make a difference by donating to SCI research!

    And for Kate - you ARE a part of our family; doesn't matter to me a whit whether a person is complete, incomplete, para or quad, walking or no. We're all in this SCI game together - just different players!

    Since this thread has taken a 'turn' from its original postings, I'm going to open another topic; why don't we try to come up with some things we can do to try and educate people we run across? Or just talk about our frustrations with dealing with John Q? See ya on the new topic!

    _____________
    Tough times don't last - tough people do.

  8. #18
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    care

    I don't usually get in on stuff like this but I'm leaning in favor of Kate's comments. My SO (caegiver?) would wonder what I was talking about if I told her she should take some time for herself; that is, if I could find her long enough to strike up a conversation.No offense intended at all TD, I just envy you.WR

  9. #19

    ha

    Originally posted by whiterabbit11:

    I don't usually get in on stuff like this but I'm leaning in favor of Kate's comments. My SO (caegiver?) would wonder what I was talking about if I told her she should take some time for herself; that is, if I could find her long enough to strike up a conversation.No offense intended at all TD, I just envy you.WR
    what you mean? you and your SO dont spend time together?

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