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What does, "It's not about a cure. It's about quality of life." mean?

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    #91
    Why is trying to regain the proper and natural bodily functions focusing on the pass, that is a common misconception. Yes we obviously had these functions in the past that is how the human body is ment to be, true. But in reality it is just hoping for a better future. For Example there are a few things that I really love and want to do and achieve, that I can't begin right now because of my paralysis. So like any obstacle you try to beat it, In this case People say its impossible or highly unlikely so most don't bother. Everyone's interests and passions are different, some are lucky enough to still be able to do them after a disability, something like computers etc. But most are. Denial in my opinion comes inonce I try to fill that lost passion with something else and tried to tell myself I love it as much or it's just as good, lie to myself in order to cope. Tell myself iam as efficient as I was pre-injury, Quality of life is just as good. Yes life is what you make it technically, but that doesn't change facts. And the fact is I could be the president as a my injury, or an able-bodied bum. Even as the president if someone doesn't clean me, I will stink and eventually get sick, and if no one else helps I'll die. At least as a bum my body is efficient enough to regulate itself and survive independently like nature intended, and if I want to climb a tree, I climb it, if I want to grab this, I grab it, jump in the lake, I jumped in. More freedom as a bum.

    But what I found ridiculous, was your interpretation of that quote. That poster represents that organization, that expresses it represents the disabled community stating "it's not about a cure" Which is completely untrue. If it was just an individual or group of individuals that state it's not about a cure FOR ME OR US, then that's alright. I will have my personal opinion that's crazy and pathetic but that's just me. And they'll probably think iam thinking in the past and weak because I can it accept sitting in a chair, cause I want to fight, fuck and join the infantry. So to each his own. But a cure needs to be pushed and fought for.
    Last edited by JamesMcM; 17 Oct 2014, 6:02 PM.

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      #92
      Originally posted by JamesMcM View Post
      Why is trying to regain the proper and natural bodily functions focusing on the pass, that is a common misconception. Yes we obviously had these functions in the past that is how the human body is ment to be, true. But in reality it is just hoping for a better future. For Example there are a few things that I really love and want to do and achieve, that I can't begin right now because of my paralysis. So like any obstacle you try to beat it, In this case People say its impossible or highly unlikely so most don't bother. Everyone's interests and passions are different, some are lucky enough to still be able to do them after a disability, something like computers etc. But most are. Denial in my opinion comes inonce I try to fill that lost passion with something else and tried to tell myself I love it as much or it's just as good, lie to myself in order to cope.

      I don't want you to lie to yourself in order to cope. Some people certainly can continue to enjoy their pre-injury passions and interests. Some people can also develop new passions and interests that create as much meaning and fulfillment in their lives as they enjoyed pre-injury (and even more). Some people decide to believe the latter is impossible, and focus entirely on what they have lost.

      There's nothing wrong (IMO) with trying to regain the bodily functions you've lost. Nearly a decade in and I still try to wiggle my toes everday. I still exercise what sensory and motor sparring I have. I've continued to realize returns far beyond the 2 year mark. My sensory sparring continues to move down my left leg, and motor control over both my legs has slowly improved, too. Nothing happens without trying, IMO.

      To answer your question, it becomes "focusing on attachments to the past" when it goes beyond simply motivating you to try. When it enables a depressed state of being, when it inhibits your capacity to find fulfillment in the Now, or even to acknowledge that as possible, it becomes a state of denial. It becomes just another way to lie to yourself. A stark realist lives not only IN the moment, but FOR the moment.

      A person living with a spinal cord injury, and living contentedly, meaningfully, and/or fulfilled, isn't lying to themselves, or denying reality. They are embracing reality. A "realist" isn't a cynic. That's pop-philosophy. A realist is someone who has learned to be content within reality, what is real, while not necessarily satisfied with it.

      If you would earnestly try to come to terms with the distinction between "contentment" and "satisfaction" I think this issue would really open up for you. I'd hazard to say, NONE of us is satisfied with our SCI, but I know many of us that are "content" with it. (Not in a "giving up" way, but in a fulfilling way. Some of them are heavily involved in "cure" research.)

      Always try to change. Because, change is inevitable. It is the fundamental currency of our Universe. Nothing stays the same. Ever. Anywhere. The ability to find contentment within The Flux is not lying to yourself, or denial. Insisting your body (or anything!) always be "as it once was", or live unfulfilled, is not being a realist. A realist knows change is the only reality, on every level.

      "Panta rhei". ALL flows.
      "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

      "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

      Comment


        #93
        Originally posted by Oddity View Post
        I don't want you to lie to yourself in order to cope. Some people certainly can continue to enjoy their pre-injury passions and interests. Some people can also develop new passions and interests that create as much meaning and fulfillment in their lives as they enjoyed pre-injury (and even more). Some people decide to believe the latter is impossible, and focus entirely on what they have lost..
        That's garbage, just like some people CAN find new passions and interests some people simply CAN'T and they don't just fucking decide to believe that. That's the person they are, with the perspective they hold over life. You know how Tyson and Ali became so good is because boxing and fighting flows through there veins no different then their blood, there was nothing else for them. This is a common thing for not for professional athletes to say, but the best professional athletes. The ones that make the other pros look like amateurs the faces of the sports. They live and die for it. Some people feel that way about computers or art and don't get much recognition for it, some feel that way about violent and or fighting. If you can just give up on or switch your passion. Simply because you can no longer do it no more because you damaged your leg became paralyzed etc means it wasn't really something you loved something you lived for basically it was more of a hobby.

        "A person living with a spinal cord injury, and living contentedly, meaningfully, and/or fulfilled, isn't lying to themselves, or denying reality. They are embracing reality"
        that's not entirely true, and completely debatable. There are many that are just embracing reality but they're the ones that are usually either lower injuries, can still do their favourite things, have a spouse, kids etc, and their are others that are completely lying to themselves. In fact I think most are partially in the denial, for the reasons I stated in my previous post. That being said I have met a few paraplegics that realize the things I stated accept them and say I'm still relatively happy with my life. Which is great for them.

        Comment


          #94
          Not to put too vulgar a point on it, I think it must be a lot easier to get all zen about your injury when you can wipe your own ass. When you're dependent, especially totally dependent, the philosophical rationalizations about how quality of life is all a state of mind ring a little hollow.

          Comment


            #95
            Originally posted by JamesMcM View Post
            Why is trying to regain the proper and natural bodily functions focusing on the pass, that is a common misconception. Yes we obviously had these functions in the past that is how the human body is ment to be, true. But in reality it is just hoping for a better future. For Example there are a few things that I really love and want to do and achieve, that I can't begin right now because of my paralysis. So like any obstacle you try to beat it, In this case People say its impossible or highly unlikely so most don't bother. Everyone's interests and passions are different, some are lucky enough to still be able to do them after a disability, something like computers etc. But most are. Denial in my opinion comes inonce I try to fill that lost passion with something else and tried to tell myself I love it as much or it's just as good, lie to myself in order to cope. Tell myself iam as efficient as I was pre-injury, Quality of life is just as good. Yes life is what you make it technically, but that doesn't change facts. And the fact is I could be the president as a my injury, or an able-bodied bum. Even as the president if someone doesn't clean me, I will stink and eventually get sick, and if no one else helps I'll die. At least as a bum my body is efficient enough to regulate itself and survive independently like nature intended, and if I want to climb a tree, I climb it, if I want to grab this, I grab it, jump in the lake, I jumped in. More freedom as a bum.

            But what I found ridiculous, was your interpretation of that quote. That poster represents that organization, that expresses it represents the disabled community stating "it's not about a cure" Which is completely untrue. If it was just an individual or group of individuals that state it's not about a cure FOR ME OR US, then that's alright. I will have my personal opinion that's crazy and pathetic but that's just me. And they'll probably think iam thinking in the past and weak because I can it accept sitting in a chair, cause I want to fight, fuck and join the infantry. So to each his own. But a cure needs to be pushed and fought for.
            Not meant with bitterness, but I find this interesting. You've made your opinions and intentions regarding suicide here on CareCure well known. You've even started threads about it and argue passionately for your right to end your life. You have said, you see this in your future, and you will fight for that future. And yet, you also argue on threads such as this one about how much you fight for your life, and its betterment, now. And that for you, "reality it is just hoping for a better future." That future for you is a cure. That future gives you your body back--other outcomes be damned. So, your future, as you seem to see it, is both life through a cure and death by suicide. And you're passionate about both. Interesting. You sir are a paradox.

            I wonder how many other people here fight for that glorious, elusive cure while at the same time despair for the right to die. How many other paradoxes. Maybe that explains the Care vs. Cure paradox. Again, no offense intended. Just, interesting.

            Comment


              #96
              I chose and asked to die in that field with my dignity two years ago. And three times in the hospital. Since that choice was made for me, against my will I have spent my time educating myself on my injury and researching about a cure, and obviously gone to physiotherapy as much as possible, put all my effort into recovering, and of course as it stands I failed. I use to go 5 days a week, now because I can't take myself and money issues I go twice a week. For obvious reasons I stand up for the right to die for myself and the many others. I also support cure research, and have set my will to donate everything I have towards the cause. Also signed a DNR of course. I now wait hopefully for a clinical trial I can put all my effort into, while using a body I've kept relatively healthy considering. Sadly I've had many, many infections, as well as stone, osteopenia and developed a synrix. All while follow the pathetic little medical guidelines. But I have bared over 300 bowel cares something that deeply sickens me, and have had to ask for help god knows how many times begging like a dog, i can't fuck or do what really matters to me and I'am pretty well completely dependent (disgusts). So arrangement are being made the process takes awhile to be honest which let's face it is a good thing.

              so I fully support cure research and activism. But for myself, and many others I've met and expressed there pain (My own suffering is one thing, but to hear about others is more disturbing and very sad especially young people like myself) I also support assisted suicide, for more reasons then just SCI of course.

              Just for the record I go out as much as I can, more in the summer when more of my friends are home. I've had some good times seen an amazing concert, had sex (f you can call it that)gone to the casinos, watch the boys at the boxing club, went to my cousins wonderful wedding with beautiful bridesmaids, go to the clubs,bars, danced (well arm flapped very drunk with some beauty's), made an amazing new friend etc,yeah And plan to continue until the time comes for one of my two options. By bettering my life I mean recovering only other acceptable option for me. Point is I don't lock myself in isolation, hiding! Unfortunately because I can't drive among other I need to be able to d, I have to wait for my friends to come over or take me out. A few fun times Doesn't change the facts though. My resolve remains. So explains the paradox, no more crap though it's all illrelevant.
              Last edited by JamesMcM; 17 Oct 2014, 11:29 PM.

              Comment


                #97
                This is the last batch that I have received. Let me know if you have any more ideas.
                As I said before. I'm not editing these; I'm just putting them out except for the ones that are totally anti-care, cure (yes, got some suggestions on that too), or quality of life.

                Committed to care, cure, and an improved quality of life.

                Improving quality of life and chances of a final cure for SCI.

                Quality of Life. Care & Cure.

                ?until finally, a cure for paralysis.
                ?and then the final improvement to quality of life - - CURE!

                Let?s put ourselves out of business by finally curing paralysis.

                We wouldn?t wish this on anyone. Supporting a future cure.

                We stand for improved quality of life & a cure for spinal cord injury.

                Cure: the ultimate quality of life.

                Improve quality of life? Cure paralysis.

                Only a cure can really improve quality of life.

                Cure ? time to really improve quality of life.
                Dennis Tesolat
                www.StemCellsandAtomBombs.blogspot.com

                "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
                Martin Luther King

                Comment


                  #98
                  Cure is right to life.

                  Comment


                    #99
                    Originally posted by Scaper1 View Post
                    Not to put too vulgar a point on it, I think it must be a lot easier to get all zen about your injury when you can wipe your own ass. When you're dependent, especially totally dependent, the philosophical rationalizations about how quality of life is all a state of mind ring a little hollow.

                    I'm sure it does. Doesn't change the truth of it. Being capable of embracing the reality impermanence makes it possible to find authentic meaning and fulfillment post SCI. Being attached to the past makes it impossible to do that. I'm sure that's harder do with some changes, and for some people, than it is for others. No doubt.
                    "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

                    "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

                    Comment


                      Originally posted by JamesMcM View Post
                      That's garbage, just like some people CAN find new passions and interests some people simply CAN'T and they don't just fucking decide to believe that. That's the person they are, with the perspective they hold over life. You know how Tyson and Ali became so good is because boxing and fighting flows through there veins no different then their blood, there was nothing else for them. This is a common thing for not for professional athletes to say, but the best professional athletes. The ones that make the other pros look like amateurs the faces of the sports. They live and die for it. Some people feel that way about computers or art and don't get much recognition for it, some feel that way about violent and or fighting. If you can just give up on or switch your passion. Simply because you can no longer do it no more because you damaged your leg became paralyzed etc means it wasn't really something you loved something you lived for basically it was more of a hobby.

                      "A person living with a spinal cord injury, and living contentedly, meaningfully, and/or fulfilled, isn't lying to themselves, or denying reality. They are embracing reality"
                      that's not entirely true, and completely debatable. There are many that are just embracing reality but they're the ones that are usually either lower injuries, can still do their favourite things, have a spouse, kids etc, and their are others that are completely lying to themselves. In fact I think most are partially in the denial, for the reasons I stated in my previous post. That being said I have met a few paraplegics that realize the things I stated accept them and say I'm still relatively happy with my life. Which is great for them.


                      Sure, some people do lie to themselves to help cope with SCI. Some people don't. Some people lie to themselves to avoid coping with SCI, too. All else being equal, lies to enable happiness are better than lies that enable sadness. What everyone does, regardless, is change. Nothing, no one, is one thing, only, and forever. Every thought is a decision, James. You aren't a marionette, dangling from the strings of your mind. Your mind is the builder, not the slave, of your experiences. Use it as you will.
                      "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

                      "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

                      Comment


                        Oh, I see, you want to focus on CAN and CAN'T. Probably not the best choice of words. How about some people DO and some people DON'T. The potential for either isn't fixed in stone. Believing CAN and CAN'T to be permanent, predetermined, character qualities has as a premise humans can't learn (aka can't change). That's objectively false. Else, how could we come to even think we CAN'T? Understanding CAN'T vs DON'T is as important to living fulfilled as understanding CONTENT vs SATISFIED. You may, or may not, be doing it now, but everything can change. Everything DOES change. No exceptions to this have been found in our Universe, to date. Even stubborn ol' James "I Can't" McM.


                        Originally posted by JamesMcM View Post
                        That's garbage, just like some people CAN find new passions and interests some people simply CAN'T and they don't just fucking decide to believe that. That's the person they are, with the perspective they hold over life. You know how Tyson and Ali became so good is because boxing and fighting flows through there veins no different then their blood, there was nothing else for them. This is a common thing for not for professional athletes to say, but the best professional athletes. The ones that make the other pros look like amateurs the faces of the sports. They live and die for it. Some people feel that way about computers or art and don't get much recognition for it, some feel that way about violent and or fighting. If you can just give up on or switch your passion. Simply because you can no longer do it no more because you damaged your leg became paralyzed etc means it wasn't really something you loved something you lived for basically it was more of a hobby.

                        "A person living with a spinal cord injury, and living contentedly, meaningfully, and/or fulfilled, isn't lying to themselves, or denying reality. They are embracing reality"
                        that's not entirely true, and completely debatable. There are many that are just embracing reality but they're the ones that are usually either lower injuries, can still do their favourite things, have a spouse, kids etc, and their are others that are completely lying to themselves. In fact I think most are partially in the denial, for the reasons I stated in my previous post. That being said I have met a few paraplegics that realize the things I stated accept them and say I'm still relatively happy with my life. Which is great for them.
                        "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

                        "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

                        Comment


                          Originally posted by Oddity View Post
                          Oh, I see, you want to focus on CAN and CAN'T. Probably not the best choice of words. How about some people DO and some people DON'T. The potential for either isn't fixed in stone. Believing CAN and CAN'T to be permanent, predetermined, character qualities has as a premise humans can't learn (aka can't change). That's objectively false. Else, how could we come to even think we CAN'T? Understanding CAN'T vs DON'T is as important to living fulfilled as understanding CONTENT vs SATISFIED. You may, or may not, be doing it now, but everything can change. Everything DOES change. No exceptions to this have been found in our Universe, to date. Even stubborn ol' James "I Can't" McM.
                          Some people are meant for certain things, that doesn't change. Like I said if you could just give up and switch your passion it was more of a hobby.
                          At what point did I say "I"
                          So CAN you jump?

                          Comment


                            Let me add some clarity to what I said Paolo. When I stated I had not seen researchers deliberately mislead I was speaking about the university based researchers we see like Young, Kirstead, Silver, etc. There is an entirely different group that I do nor consider researchers but rather charlatans who are claiming to be injecting stem cells that will cure you or about any ill you may have. There are some in Texas, California, Arizona and the Dominican Republic to name just a few places. They will gladly lighten your wallet while performing dubious procedures. When somebody asks you not to reveal who or where they are it raises a huge flag for me. I consider that group thieves not researchers.

                            I always want to know what group of peers reviewed their work or (if in the US) when the clinical trial was even if it was only for safety.

                            Originally posted by paolocipolla View Post
                            I have had very similar experiences.

                            Paolo

                            Comment


                              Hello all.
                              Here are all the suggestions which I received and I hope that you can spend two minutes to help me narrow it down to 10 ideas which I will then send to SCI BC. Please let me know what you think!

                              http://stemcellsandatombombs.blogspo...place-its.html
                              Dennis Tesolat
                              www.StemCellsandAtomBombs.blogspot.com

                              "Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom."
                              Martin Luther King

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