Page 3 of 4 FirstFirst 1234 LastLast
Results 21 to 30 of 35

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

  1. #21
    if there was a cure tomorrow for SCI, all or most of the people who have SCI would enjoy, and appreciate life more than anybody and if we faced a problem we probably would never whine and probably not see it as a problem most of the time.

  2. #22
    Quote Originally Posted by lonecoaster View Post
    How disabled should you be, to be on this site? Compared to you, I'm superman. But that doesn't mean I don't have SCI issues. I thought we were here to help each other. What do you say T-8, chair only?
    I think the operative word in my post and the URL for this site is "SCI". Compared to a high level quad I have it relatively easy. Relative meaning I get to dig crap out of my ass myself instead of having someone else do it. As far as I know all SCI sucks and certainly don't begrudge anyone with it bitching. I also don't advocate alienating or berating people who don't have SCI and who choose to share how hard their life is, I just said it irritates me.

  3. #23
    Senior Member Sarafino's Avatar
    Join Date
    Dec 2010
    Location
    SW Colorado---chair user from nerve disorder
    Posts
    266
    I don't have an SCI, I have a degenerative nerve disorder. I am a full time chair user, my hands and arms are also effected. Eventually everything that is part of the peripheral nervous system will be involved. I live in a constant state of grief because my condition is always getting worse, and having to continually lower my expectations, give up activities, rely more and more on my husband, and probably losing my ability to work soon (I am a sculptor). I am sometimes envious of quads because their faces are normal, while I can feel my disorder creeping into my facial muscles. I don't see how any part of my actual life fits into normal conversations. I find having to always meet people on their level to be mentally and emotionally exhausting. I want someone to meet me at my level, but only other disabled people can meet me there. So I feel like a fake person around AB's. I have an AB friend that I have had for 12-13 years who has been through some horrible stuff and has a lot of depression. My husband (more like a caregiver now) is an AB. The other AB friends are my neighbors who care for their severely brain injured nephew and are so kind and caring with him. I feel ok around them. Other than that I pretty much avoid any sort of lengthy interactions with ABs. For me it is just too draining and leaves me feeling even more alone.

  4. #24
    Senior Member Sarafino's Avatar
    Join Date
    Dec 2010
    Location
    SW Colorado---chair user from nerve disorder
    Posts
    266
    I wanted to add that part of my reason for being on this site is in the past the only other disabled people I felt a connection to were two quads. I got to go on a weeklong trip with them and for the first time in my life felt OK about myself and learned a lot from them on how to cope with limited dexterity. Sadly they live too far away for me to have had a continuing friendship, but the feeling I had while with them has made me want connection with other disabled people. Like if I don't get it I will die.

  5. #25
    Quote Originally Posted by Oddity View Post
    I think the mission of this site is pretty clear. Turning people away is dicky, not advocating that, but SCI is SCI, whatever the flavor.

    James: my shit doesn't stink as much as others, more than some. Doesn't affect whether what I say is true.
    SCI is too vague of a term. There is paraplegia and there is quadriplegia, there is low quadriplegia and there is high quadriplegia all of these are completely different conditions, and will lead to different perspectives, interpretations and of course deserve separate conversations from time to time. The implications and lifestyles are not even comparable it's like comparing a lake to an ocean both bodies of water, but two very different things in every sense of the way. Again you brought this topic up by saying something ridiculous the "sci is sci" is preposterous (and is one thing for a C1 to say for the sake of inclusion, but ungodly ignorant and arrogant for a paraplegic to say), but however until you brought that up I did not single out paraplegia versus quadriplegia, I singled out able-bodied folk for the sake of a conversation to vent which a few have and can relate.

    Oddity: preaches like Braveheart, yet is actually as fragile and defensive as a fawn (just so you know that's a personal attack, a response to you and your initiated personal attack) it's ironic that you exhibit this, yet when it comes to sci you're in one of the most luxurious seats. You know nothing on the topic and that's a fact. Again this is a response in retaliation to something preposterous you brought up. i'm not singling you out, you brought it upon yourself by trying to do that to me as per usual, and as per usual your exhibit a very ignorant demeanour. Christ most of us with high injuries if we were to get our hands ( A true luxury beyond comprehension and words) back we wouldn't even be here.
    Last edited by JamesMcM; 10-19-2016 at 06:39 AM.

  6. #26
    Quote Originally Posted by Sarafino View Post
    I wanted to add that part of my reason for being on this site is in the past the only other disabled people I felt a connection to were two quads. I got to go on a weeklong trip with them and for the first time in my life felt OK about myself and learned a lot from them on how to cope with limited dexterity. Sadly they live too far away for me to have had a continuing friendship, but the feeling I had while with them has made me want connection with other disabled people. Like if I don't get it I will die.
    Have you tried Kijiji, craigslist more often than not high quads live fairly isolated lives and I'm sure you'd be able to find someone where it would be mutually beneficial to meet up just to hang out. I don't know where you live but you could also try rehabilitation centers, private neurological physiotherapy clinic too which I hope you take part in especially considering you have a degenerative condition got to keep things moving as much as possible it may or may not help but worth a try right

  7. #27
    Quote Originally Posted by scimike View Post
    if there was a cure tomorrow for SCI, all or most of the people who have SCI would enjoy, and appreciate life more than anybody and if we faced a problem we probably would never whine and probably not see it as a problem most of the time.
    Oh 100%, if I could reach out and touch something, feel it, interact with it whenever I want, use it to control and manipulate everything around me give me freedom and independence, shaped my life myself. I would literally never have a real reason to be unhappy.

  8. #28
    Quote Originally Posted by scimike View Post
    if there was a cure tomorrow for SCI, all or most of the people who have SCI would enjoy, and appreciate life more than anybody and if we faced a problem we probably would never whine and probably not see it as a problem most of the time.
    IF there was a cure tomorrow (that likely wouldn't instantaneously grew bone and muscle mass/function, but what the hell, it's fantasy so let's say it will), whiney, pissy, and complaining people today will still be whiney, pissy, and complaining people tomorrow.

    They'll be whining, pissy and complaining that the cure didn't come yesterday and be annoyed that new sci'd are reaping greater benefits than them.

  9. #29
    Quote Originally Posted by chick View Post
    IF there was a cure tomorrow (that likely wouldn't instantaneously grew bone and muscle mass/function, but what the hell, it's fantasy so let's say it will), whiney, pissy, and complaining people today will still be whiney, pissy, and complaining people tomorrow.

    They'll be whining, pissy and complaining that the cure didn't come yesterday and be annoyed that new sci'd are reaping greater benefits than them.

    Take nothing from this, is nothing but defencive bitterness,unrational thinking and a hysterically inaccurate generalization; Half a mind to say he's a liberal lmao. Equally hilarious he takes the post of people venting on a spinal cord injury fourm (people with worse injuries than himself no less) he then used these post to come to the "conclusion" that the individual who writes that is entirely whiny almost as if these posts on this fourm that welcomes a specific topic encapsulate The individuals entirely lmfao... ergo why I said it's nothing but irritated defensive bitterness, there's no logic behind it and the laughable attempt at in direct insult however misguided is a clear sign of defensiveness.

    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. and the approximately 100 million people worldwide ( actually to be fair not everyone of those hundred million are actually "living boldly" say 70% easy are paraplegic, we will minus 10% to account for the paraplegic who don't fit the rehab ideological narrative of "brave/ strong gimp" but we will take another 10% from the 30% that account for quadriplegics, so roughly 70% are living BODLY excuse my rough numbers of course) so the 70 million living with spinal cord injuries are the strongest and most courageous individuals the human species has to offer, because you welcome your disability with open arms. I imagine the new president will start handing out medal of honour as if their skittles to every unendingly courageous individual that sits in a chair purely on the basis they accommodate a new lifestyle oooo bravo...

    Back to reality, the fact is anyone that was trapped on a ventilator unable to be free in anyway right now. tomorrow if they were given their entire body back and have any kind of integrity/self-respect remaining, breathing would not become some unappreciated unacknowledged mechanical function it would be addressed and appreciated for the luxury it is, as would hand function, as would sexual pleasure to the thousand degree. These kind of people will probably have a hard time ever finding the same level of "depression" after such a drastic eye-opener. Most would have the integrity to realize the only people that should ever be "whining" are the people that have problems that are permanent and affect them every second of every day. you are absolutely right no treatment will fix the bone damage and muscle damage. But keep in mind in reality no spinal cord injury treatment will just happen in a week or so, to address a chronic injury it will take years a very intensive daily task specific rehab the muscle atrophy and bone damage will slowly improve during functional daily intensive exercises to help stimulate and induce regeneration. Also Most people that will have the capabilities of accomplishing such a feat will have already begun a program with drugs and vibration therapy/electrostimulation to keep the bone damage and muscle atrophy (as well as many other things that come from paralysis rot) at bay as much as possible. What really makes me curious is how many people in the future will; despite the option of a treatment, choose to remain severely paralyzed, maybe even heavily dependent just to prove how "strong" they are and get to say " through the effort of caregivers and social services I CAN do it"!!!!

  10. #30
    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

Similar Threads

  1. Replies: 9
    Last Post: 02-18-2007, 01:18 AM
  2. stormie's "worldly Problems" thread
    By betheny in forum Caregiving
    Replies: 1
    Last Post: 03-21-2006, 08:16 PM
  3. Replies: 52
    Last Post: 01-17-2006, 12:44 PM
  4. eyesight problems & "drunk" feeling
    By tigergirl in forum Care
    Replies: 4
    Last Post: 09-22-2005, 09:04 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •