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Do you ever get annoyed listening to "able-bodied problems"

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    Lonecoaster - thank you. My beloved wife felt the same. Thank you for understanding, and knowing that we understand.
    Reality is merely an illusion, albeit a very persistent one.
    - Albert Einstein


      yeah especially if you are upbeat in your chair., they think you are just sitting down and have no problems. i dont complain about my stuff much so they just think your fine...they have no idea about all your stuff that goes along with your injury...


        Most of your reply to my post you quoted has nothing to do with the post.

        But you say -
        Man I already told you I'm a weak piece of shit, oh so whiny cannot begin surmount your god-like level of strength... don't worry all us "whiners" We know you and oddity, a trophy guy etc. etc. ..
        who knows what true "strength" is. I sure don't. it's not something I've ever claimed and it's not anything to do with my previous post. In it, I'm basically only stating a condition that just IS - one's core character, their essential self, their essence, their basic personality, tend not to change after an SCI, or any traumatic injury. If you're a kind soul, you'll be a kind soul after sci; if you're a dick, you'll be a dick with an sci. This shapes how one deals. It doesn't mean one doesn't change or cannot change, it just means that ones core self tends to remain.

        F.Y.I I can't speak for oddity but I'm hardly a trophy guy ... but shucks, you make me blush.
        Last edited by chick; 23 Nov 2016, 4:04 AM.


          the ones that get me are the obsess the fatties that are 200 lbs plus complaining that boils my blood


            Originally posted by Shmueley View Post
            This is a major issue I struggle with. My disability affects so much of my life and has changed it in such a dramatic way that it really is difficult to relate to healthy, able bodied people.

            I don't have an SCI, I have a mitochondrial disorder called MNGIE that affects my digstive system, brain,and muscles. I cannot keep food down or digest it, and even with a feeding tube/artificial nutrition, have constant nausea and GI pain. I also have declining mobility and various kinds of neuropathy and am unable to movemuch from the waist down, very limited movement in upper body,cant turn over in bed or transfer, respiratory problems, etc etc etc etc. I also have fatigue and dysautonomia,so things like getting in and out of my wheelchair, sitting up, any sort of positional change takes a lot out of me and zaps me of all my energy.

            When my wife was pregnant, I had a really time empathizing with a lot of her very typical aches, pains, and troubles of pregnancy. She didn't complain too much, I think because she knew that nausea was a chronic problem of mine and she knew her morning sickness was temporary. But even still, it was hard for me not to say stuff like "Well at least it'll be over at some point for you." Or the swollen ankles and round ligament pain. and the exhaustion--something that is a big part of life with mitochondrial disease too. It was hard not to say, "Oh really, you're tired?"

            Sometimes she complains of stuff related to activities I can only dream of doing at this point. Eating in a restaurant, going places without assistance, holding down a job. Having a social life.

            Like you, I think in the past there were times when I didn't appreciate what I had. I complained about traffic jams instead of being grateful that I can drive a car and not have to be accompanied by a caregiver or nurse everywhere I go. I complained about changes being made to the NYC subway system and had no idea how difficult to navigate it is for wheelchair users. At the same time, I really REALLY hate when people tell me that it could be worse. People say this to me sometimes and it pisses me off to no end. I'm always like "I have chronic pain, I'm unable to move, eat, take care of myself, I've lost my career, my bodily autonomy, and I poop into a plastic bag, and I can't hug my own children. Exactly HOW can it get worse, I'm honestly very curious" Telling me that I could be one of those people in Syria who had their whole town bombed and lost my whole family....or living under the tyranny of ISIS doesn't really make living with severe,debilitating illness any sweeter. So I don't think that this tactic is going to work with other people either.

            As difficult it is, I think the best thing is to respond with empathy. They don't know what it's like to be me, and I also don't know what it's like to be them. I don't know what it's like to be a woman carrying a child, and trying to work full time and take care of my chronically ill husband. I don't know what it's like to watch my spouse slowly decline,and to have to prepare to lose my husband and be a single mom. i think this video does a good job of explaining what empathy is, and what empathy isn't:

            sometimes i talk with friends of mine and they tell me about their problems. On one level, they're hard to listen to and I don't think the pain of losing my ability to do most of what my friends can do will ever go away. It's hard to hear about stuff I'll never be able to do again. At the same time, I'm glad they still see me as someone who's a safe person to talk to about their problems. I try to go back to that place, where I rememeber doing those things and relate as much as I can. I think that if I can give them some empathy, they hopefully will be in a place where they can give some to me, too. It's ok to say truthful statements like "I don't know what it's like to _______" or "I really miss being able to _______." No one will truly be able to understand exactly what you go through, but when two friends both go to the efffort of trying to understand where the other person is coming from, it can still be a mutually enriching friendship
            "It could be worse" I find that it tends to be mostly ignorant people who regurgitate that useless one liner, in most cases perfectly healthy people, in other cases tragic situations but not the most unrelentingly horrific conditions that affect every Single little detail of life leaving you unable to even be able to do the most Mundane of tasks efficiently, if at all. For example amputees, paraplegics, most cases of MS etc. Tragedies in their own right undoubtably but they aren't the kind of things like high complete quadriplegia, severe ALS, locked in syndrome, severe Trumatic brain injury etc. these are the kind of things that give meaning to the word "worse" at the end of that one liner...
            Last edited by JamesMcM; 2 Dec 2016, 9:58 AM.