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Thread: How do you make people understand

  1. #11
    Member Lilli's Avatar
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    There was a post circulated on Facebook recently about a bride who "walked" down the aisle (inspiring). Maybe they just keyed into that and wanted it for you. ('cause we are all just alike!) I have spent tons of time trying to walk. The attempt was sucking back as much of my time and energy as having a SCI does. It seemed crazy to keep it up to be able to move in a way that would lead to moving slowly, being unable to use my hands because they are occupied and risk falling down. It is not something that can be sustained. I bet if you did attempt it you would be exhausted on your wedding night. I'm sure your folks mean well, they just don't get it.
    WOW! Oct. 25 is almost here! Congratulations!

  2. #12
    I agree. I will be 10 years in January and it's like they have heard nothing I have attempted to explain to them!

    Thanks!!! I am super excited and happy for many reasons! I just hope my body cooperates, as much as possible, on that day.

    Becky

  3. #13
    The times I have attempted in therapy that is exactly the result. I am drenched in sweat after five minutes and need a few hour nap and a shower. Clearly not worth it!!!

    Thanks but it is unfortunately Oct 25, 2014. I wish it was this year!!!


    Becky

  4. #14
    Thanks for the understanding! I wish I would be able to make their hope come true but it isn't like I haven't been trying...


    Becky

  5. #15
    My friends understand but, my family, the ones that I wish would get it just don't. It is so aggravating and makes me very upset.


    Becky

  6. #16
    Senior Member ~Lin's Avatar
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    I definitely agree that what matters most is how you're the most mobile and active, not the way you're doing things. I'm still a rather new wheelchair user and can still walk part time. Its SO much harder to walk with the bracing and forearm crutches and its exhausting and painful. I feel so much better in my chair and can do so much more! If the nature of my disorder didn't include some "use it or lose it" I'd probably use my chair full time so I could be more active. I had an orthopedic surgeon who didn't understand this at all, but then he also didn't understand my condition and after making some dangerous recommendations that I discussed with my geneticist I switched to someone else for a second opinion!

    If your goal IS just to prevent the topic from coming up over and over, and you realize you can't make them understand, sometimes you just have to be blunt. Aggressive if necessary. I've had these sort of issues with my dad and stepmom. Eventually I had to be blunt and tell them that I was done arguing and would no longer address such and such topic if it was brought up. And I stuck to my guns and didn't. There has been one topic where I had to get downright aggressive, more so than I would recommend lol, and told my stepmom in an email to fuck off. However, that was the only thing that finally worked!

  7. #17
    Senior Member
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    I was in my brother's wedding and there was some talk about me using braces to walk down the aisle. I even liked the idea. After I demonstrated my walking it was rather quickly decided that my chair would be better. My braces consist of RGO's and for some reason, the farther I walk the slower I go. I sincerely wished that I could have done it and in fact I wish I could walk more in general but it's a fair amount of work and in a wedding setting it was quite impractical.

    Perhaps if you offered a demonstration of the effort that would be involved the topic might be dropped like it was in my case.

  8. #18
    Moderator jody's Avatar
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    I couldn't walk without pain meds. My shoulder needs repair, as does my original L5S1 dislocation. I can't handle the pain at all if not using pain meds. Imay have to go to kafo on one side, as my knee's and hips have subluxation and even more pain now, and getting upright is very difficult compared to before my recent knee injury. I wouldn't have the huge pain burden that I have now if I chose not to use braces etcetera to stay semi mobile. As it is, It's more pain than a mind can function with. tell them you would need huge amounts of pain meds, and it isn't worth the trade off of walking a few steps while risking further injury.

  9. #19
    You are the "decider in chief". One of the things this oldster learned in paralyzed life (since age 7), is: avoid letting others make decisions about your life, whether its's how you tackle issues of disability, etc.
    Often, others' suggestions, rules, etc. just don't work. It's a wonderful feeling to screw up your courage and say "Naw....won't work for ME". Then you can explain briefly WHY, if you wish.
    Very best to you!

  10. #20
    Senior Member Sarafino's Avatar
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    SW Colorado---chair user from nerve disorder
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    I made the decision to give up walking 4 years ago. I have a degenerative nerve condition. I had a horrible bought with sciatica and got an MRI that showed my lower back is totally screwed up. Walking and standing really bring it on. I can sit just fine, though. My 'walk' was like something out of The Walking Dead, and used a ton of energy and concentration, plus I would fall and it was getting very hard to get back up. Since going to wheeling I have found I enjoy getting out and about and make eye contact, smile, etc a lot more. A wheelchair or scooter is somewhat self explanatory, and there is a gracefulness to it. I don't know how anyone could not have been scared of me on crutches because it was horrible.

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