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Thread: ***Unite(D) to Fight Paralyses.***

  1. #11
    Senior Member Moe's Avatar
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    Quote Originally Posted by niallel View Post
    Thats exactly my point.

    It sounds like you want to build a group of activists, I'm not saying there is anything wrong with that but it doesn't put anything into our hands.
    You are going to be trying to get someone else to do something, and lets be honest the world is obsessed by "Me Too", womens pay, LBGQTXYZ+ etc.
    no obsession of any kind, nobody's doing anything for me neither.
    "Talk without the support of action means nothing..."
    ― DaShanne Stokes

    ***Unite(D) to Fight Paralyses***

  2. #12
    Quote Originally Posted by Moe View Post
    no obsession of any kind, nobody's doing anything for me neither.
    I don't follow.

    If you think activism is the right way I understand.

    There is nothing to stop us all going on both paths.

  3. #13
    Senior Member Oddity's Avatar
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    Quote Originally Posted by niallel View Post
    If thats what you think, why are you reading this forum?

    Gatekeep much?! How about: because he feels like it. Or, because he has a medical degree and it's interesting to him. Or, any other reason, frankly.
    "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

    "Even what those with the greatest reputation for knowing it all claim to understand and defend are but opinions..." -Heraclitus, Fragments

  4. #14
    Quote Originally Posted by Oddity View Post
    Gatekeep much?! How about: because he feels like it. Or, because he has a medical degree and it's interesting to him. Or, any other reason, frankly.
    Fair enough. It just feels like coming on a forum where everyone is looking for a cure to tell people it won't happen for 200 years is not so friendly either.
    Or frankly he might be able to speak for himself.
    Last edited by niallel; 08-20-2018 at 02:55 PM.

  5. #15
    Senior Member Moe's Avatar
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    I'm hoping something positive would brew from the title of this thread.... inner fighter seems non existent in SCI's anymore. Will depend on foundations and blame everybody else for solutions... keep trollin' and distract everybody from the important issues. go to bed tonight remaining a SCI.

    from some of the kind of thinking I read so far, African Americans would still be sitting in back of the bus and women still not allowed to vote today. sad.

    so Black people actually loved to sit in back of the bus and women never cared to vote would be an equivalent excuse.... but yet they log-in to forums complain and whine about it.... funny bunch of pussies...

    we need our own 'gay parade' 'gay flag' 'Terry Fox run' 'earth day' 'independence day' 'marijuana legalization' we need to make similar events to impact the media to expose our situation to the world and UNITE(D)

    get that fucking D in there

    I'm in for the SCI's my home area, we're forming a group in Montreal, Qc. No events planned yet. If groups would form everywhere globally, it would give a great impact to a future schedualed event. NO RIOTS just be present in a large group full of wheelchairs type of event.... no money nor foundations, the're already out there. Just UNITY and FIGHT, include ourselves in large group following the town parade is a breif example...

    Macy's parade in NYC would of been great, imagine 1000's of wheelchaired sci following in back of the parade.... be on tv, people wondering wtf? could be a potential topic in the upcoming 2020 presidential elections debates too...

    How many of you smartasses even knew what was a SCI before you got injured? I didn't. billions of people out there standing still don't know neither.
    Last edited by Moe; 08-20-2018 at 04:50 PM.
    "Talk without the support of action means nothing..."
    ― DaShanne Stokes

    ***Unite(D) to Fight Paralyses***

  6. #16
    Quote Originally Posted by niallel View Post
    If thats what you think, why are you reading this forum?
    This is a fair criticism. I usually stay far, far away from the cure forum. I just woke up early this morning and I always browse the Care Cure homepage with the latest threads and this one piqued my curiosity and I wondered what Moe meant.

    I normally try not to piss on people's parades (or hypothetical fantasy pride parades), and try to withhold what I consider rational thought from the usual overly optimistic cure forums. Some people need that glimmer of hope to keep breathing... for me it was easier to accept the fact that this is life now and it's never, ever going to change and move on. But perhaps the truth lies somewhere in between. In order to move on with my life I've had to completely reject the possibility of a cure, and while I think the scientific evidence and medical precedents are on my side, those who have had to completely believe in an imminent cure are not necessarily more unconsciously biased toward the possibility of a cure than I am against one.

    Still I think the main criticism of my post (before I started getting all salty and ornery) is fair.

    It's not as if people marching for us or waiving cripple flags or voting for constitutional amendments that say "Spinal cord injuries are officially the devil's work" is going to do anyone any good. It's a (thus far at least) insurmountable technical challenge, not an issue of social injustice.

    There are no pride parades for teleportation or marches on washington for the immediate and complete funding of a time travel machine. Yet asking for these as yet impossible technologies is probably closer in nature to asking for an SCI cure than legalizing pot or letting gays bone each other without breaking the law.

    If we look at a more comparable cause, Breast Cancer has been very big and raised tons of money (way more than SCI could ever feasibly raise) and have been in full swing for decades, and the result has been maybe a 10 or 15% decrease in overall mortality (and who's to say that wouldn't have happened anyway with improving imaging technology and increased screening). There's certainly nothing approaching a "cure" for all breast cancer on the horizon and pretty much all of us know someone who's had breast cancer.

    But let me reign myself in before I go all crotchety-old-man on you fine folks again.

    If you want to do something for a cure, great. Go get a PhD in neurobiology and do the research yourself... I'd certainly never fault anyone for pursuing science, regardless of whether or not you can find a cure, you're likely to stumble across something that makes someone's life better. Hell, you don't have to go that far, researchers are always looking for lab assistants, go volunteer your time doing the work, not trying to convince others to raise the money.

    If you want to go out and organize to make lives better for SCIers everywhere, you should probably start by pushing developing countries towards starting to build accessible infrastructure or mass producing high end cushions to provide to global SCIers who's countries can't afford what we would consider proper SCI equipment. Organize for a single payer system in the US and I'll be right behind you, it will free up trillions in savings, some of which will almost necessarily filter back into basic science research furthering the cause of a cure. Write your senator to convince them that a hard cutoff for loss of Social Security, Medicare and Medicaid benefits is counterproductive and there should be a graduated system of benefits reduction as income increases, more disabled people will go back to work if they know their benefits won't be suddenly and precipitously cut off after they earn one dollar over X amount.

    There's no grand conspiracy to keep us cripppled.

    If you're going to fight for something, fight for something real. If you're going to organize, put your efforts toward improving real people's lives, not slightly improving pie-in-the-sky chances of a cure. I guess that was what rubbed me the wrong way, feeling like Moe was suggesting putting all this effort into trying to raise money and build public will for a cause that is unlikely to succeed in any of our lifetimes. There are more pressing issues in the world than an SCI cure. There are more pressing issues for SCIers than a cure.

    I'm a romantic and a bleeding heart and I've also trained as an economist. I love a good protest and even a riot or two if it's for the right cause, but damn if it don't make my blood boil seeing such energy and passion wasted inefficiently on pointless endeavors.
    Last edited by funklab; 08-20-2018 at 11:34 PM.

  7. #17
    Also, Moe, love the passion. But maybe (just maybe) a cure is shooting a little too high. Lower your sights to something a bit more realistic and I bet you could move mountains.

  8. #18
    I could not have said it better myself Moe, we are invisible at the moment. We vanished into thin air when Christopher Reeve died. I will try not to make my post long, I will try to be meaningful yet succinct as possible because writing and arguing is a waste of my time.

    When I got injured, I decided that I must in fact go back to school for a PhD in neurobiology as was previously stated by another commenter. I studied history & psychology, just started my own business and had my life all lined up, starting my studies in international security policy for my Masters, saving to study abroad for a year and my plan to after serve in the special forces for several years before earning my law degree. I do not want to become a doctor or scientist, I never did, but now I will because something must be done. For myself and for everyone else who is trapped in this life.

    I refuse to accept this, and therefore I do not have time to argue or be ornery even though of course my reflex is to want to do just that, as I'm sure all of us guys can understand. Certainly also especially when we are trapped like this.

    Please read these words and know that there is hope. There always is, there always is so long as there is a fire still burning.

    I know that embers still yet smolder, even in the depths of the dark, deep in the eyes of every young man or woman who just awoke, gasping for air, laying in a state hospital cot with fresh steel rods in their neck and a ventilator in their throat. It will take a little while for that scared, hurt, beat-dog-in-the-corner feeling to subside, the one where you completely understand what an animal hit by a car that's half dead and broken on the side of the road hobbling around feels like. Once they realize where they are and realize what they just lost, they will want it back so bad and be willing to do absolutely anything to accomplish that, climb any mountain, slay any devil.

    Right before the doctors and hospital staff come in and tell them "it's okay" and they'll still be able to live a "comfortable life". But they will just have to "get used to this", but "that's okay", they'll be "comfortable". I know that that moment, that moment before the doctors and social workers open their gaping maws to start to swallow your life by starting to let loose the first of those ridiculous words that many might actually believe because of the diplomas hang above those desks, I know that that moment when that fire burned bright and true in their hearts, I know that that moment still lives somewhere in the back of any man or woman's mind who has been through this, no matter how much has piled on top of it since then. And it does pile on, so much does.

    But that fire and that moment is still there somewhere even if its deep down in the depths of the black of your eyes when you lie silently in bed and stare at the ceiling at night all alone and feel your heart shattered into a million pieces and want to cry out for your life, but you've done it so many times and you're just tired of it all. Even then that fire is still there even if its only a pinprick of light in the depths of all that black.

    Please, all of you, read these words and know that there is still hope.

    What you have stated Moe, this is my current mission and goal. I am a motivated and intelligent young man in graduate school about to turn 30 years old, I recently got injured one year ago and upon waking up from essentially a medically induced coma, I could not comprehend why there is not more treatment and and a cure yet. This has been mind blowing to me. This is the year 2018 what the hell is going on. Someone has not been doing their job, has been slacking and I now apparently I have to take over and clean it up.

    I was told that I just have to get used to it, I say f*ck that. The emphasis in the medical world is to manage the symptoms and to allow somebody to "live a comfortable life". I do not want that, I want it all. And I will not stop.

    I resolved that I will have to do it myself and work with other like-minded individuals in order to organize exactly what you stated in your question.

    Please I hope that you are interested in doing exactly what you stated needs to be done in your original post. We need organization and a solid team to get this done and I will gladly partner with you on this issue. Please contact me directly and any and every one else. I am working on it now and have been all night, every night since I righted my ship.

    And what do you know, I spent far more time writing this post than I ever wanted to. Yet it was important. Perhaps even the most important thing that I could be doing after all in many respects.
    Last edited by Vindex; 08-21-2018 at 04:57 AM.

  9. #19
    Quote Originally Posted by funklab View Post
    This is a fair criticism. I usually stay far, far away from the cure forum. I just woke up early this morning and I always browse the Care Cure homepage with the latest threads and this one piqued my curiosity and I wondered what Moe meant.

    I normally try not to piss on people's parades (or hypothetical fantasy pride parades), and try to withhold what I consider rational thought from the usual overly optimistic cure forums. Some people need that glimmer of hope to keep breathing... for me it was easier to accept the fact that this is life now and it's never, ever going to change and move on. But perhaps the truth lies somewhere in between. In order to move on with my life I've had to completely reject the possibility of a cure, and while I think the scientific evidence and medical precedents are on my side, those who have had to completely believe in an imminent cure are not necessarily more unconsciously biased toward the possibility of a cure than I am against one.

    Still I think the main criticism of my post (before I started getting all salty and ornery) is fair.

    It's not as if people marching for us or waiving cripple flags or voting for constitutional amendments that say "Spinal cord injuries are officially the devil's work" is going to do anyone any good. It's a (thus far at least) insurmountable technical challenge, not an issue of social injustice.

    There are no pride parades for teleportation or marches on washington for the immediate and complete funding of a time travel machine. Yet asking for these as yet impossible technologies is probably closer in nature to asking for an SCI cure than legalizing pot or letting gays bone each other without breaking the law.

    If we look at a more comparable cause, Breast Cancer has been very big and raised tons of money (way more than SCI could ever feasibly raise) and have been in full swing for decades, and the result has been maybe a 10 or 15% decrease in overall mortality (and who's to say that wouldn't have happened anyway with improving imaging technology and increased screening). There's certainly nothing approaching a "cure" for all breast cancer on the horizon and pretty much all of us know someone who's had breast cancer.

    But let me reign myself in before I go all crotchety-old-man on you fine folks again.

    If you want to do something for a cure, great. Go get a PhD in neurobiology and do the research yourself... I'd certainly never fault anyone for pursuing science, regardless of whether or not you can find a cure, you're likely to stumble across something that makes someone's life better. Hell, you don't have to go that far, researchers are always looking for lab assistants, go volunteer your time doing the work, not trying to convince others to raise the money.

    If you want to go out and organize to make lives better for SCIers everywhere, you should probably start by pushing developing countries towards starting to build accessible infrastructure or mass producing high end cushions to provide to global SCIers who's countries can't afford what we would consider proper SCI equipment. Organize for a single payer system in the US and I'll be right behind you, it will free up trillions in savings, some of which will almost necessarily filter back into basic science research furthering the cause of a cure. Write your senator to convince them that a hard cutoff for loss of Social Security, Medicare and Medicaid benefits is counterproductive and there should be a graduated system of benefits reduction as income increases, more disabled people will go back to work if they know their benefits won't be suddenly and precipitously cut off after they earn one dollar over X amount.

    There's no grand conspiracy to keep us cripppled.

    If you're going to fight for something, fight for something real. If you're going to organize, put your efforts toward improving real people's lives, not slightly improving pie-in-the-sky chances of a cure. I guess that was what rubbed me the wrong way, feeling like Moe was suggesting putting all this effort into trying to raise money and build public will for a cause that is unlikely to succeed in any of our lifetimes. There are more pressing issues in the world than an SCI cure. There are more pressing issues for SCIers than a cure.

    I'm a romantic and a bleeding heart and I've also trained as an economist. I love a good protest and even a riot or two if it's for the right cause, but damn if it don't make my blood boil seeing such energy and passion wasted inefficiently on pointless endeavors.
    Thanks for your detailed response.

    I too have days where I think my condition will never improve, but then I remember there are many research projects that have shown a lot of promise and while not leading to a complete cure could improve our lives in a sizeable way. Things like estim, peptides, nogo blockers, stem cells, chase etc which we all come here to hear about.

    Regarding your points about campaigning for others to raise money, its not something for me either. However that doesn't mean its wrong, there are many in the community who have been successful at this and raised significant amounts of money which is going towards the "cures" we are hearing about. I'm sure they wouldn't think their efforts were pointless.

    The time taken to become a researcher is going to be huge for most of us. I would love to know more about the science and help in that way, but its a mountain too tall to climb for me. As an economist you must see the opportunity cost means it is better for people to use the skills they have today to help in a way they can. As an example start a company using your skills that enables you to fund many researchers.
    I know its not appropriate for everyone, but its possible for some of us. For others use the skills they have to get money to fund more research, which I think is what Moe is advocating.

  10. #20
    Senior Member Moe's Avatar
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    I'm at work, I'll catch up reading as soon as I can, but just to be clear, the 'visibility fight' in my view was not to raise money nor support any research in particular -that exists already... The visibility was to fight unnecessary obstacles/regulations if something DOES show up...

    Dr. Silver's Peptide and Dr. Young's UCB research seems promising for example, we cannot let time go by and let it rot in a shelf waiting for BS regulation approvals... some regulations is for our own good for safety reasons, I agree. we need more green lights and less obstacles. Per example its been about 4 years since phase II... Researchers do what they do best: RESEARCH. They are not lawyers toward Government rules, even if they did, they should be focused on their work instead. That's why I find our visibility and do our part is important to fight these obstacles.

    Think as per example:

    Imagine if the 'peptide' or 'UBCB' is a success in humans... even better than expected! wow would be great news.... oh but wait, didn't pass regulations, therefore not ready for the public... Even if I inherited 1 billion dollars I still cannot purchase it legally for myself.

    Regulations need to be dealt with before a potential treatment shows up, staying in the closet will just make us non-existent to the public/politic views.

    back to work... brb
    Last edited by Moe; 08-21-2018 at 11:38 AM.
    "Talk without the support of action means nothing..."
    ― DaShanne Stokes

    ***Unite(D) to Fight Paralyses***

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