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Thread: When is the line drawn?

  1. #1

    When is the line drawn?

    This Injury has taught me that modern medicine does not care about dignity, an individuals principles or perception of honour or basically when the line is crossed....

    if if you are in an accident and your entire body is covered in third-degree burns, or you lose control over the vast majority of your body, or you damage your brain substantially to the point you just become blank it does not matter you come into the hospital they're going to do everything they can to save you,no matter what kind of "life" you'll have...

    Obviously Science needs to move forward faster, bring new treatments to the most complicated of injuries and diseases! But until then is there ever a point where the line should be drawn?

    I don't know about any of you but I am a Metallica fan, one of their best songs ( definitely best guitar solo) is called One. It was inspired by the novel Johnny got his gun. It was fiction inspired by a gruesome true story about a Canadian soldier from World War I. During battle, a mortar shell hits very close to ?Johnny? Joe Bonham, causing severe physical damage. He loses both legs, both arms, eyesight and hearing?nearly every physical bridge to the outside world?yet remains alive in an Army hospital with a hood covering his disfigured face. At first, Joe cannot determine whether he is asleep or awake, alive or dead. - See more at: http://www.sfreporter.com/santafe/bl....FHul4NiN.dpuf

    Seems a bit sick to keep someone alive like that don't you think? But there are many scenarios equally or almost as bad, fact is it doesn't have to be that extreme for it to be questionable to keep someone alive, especially based on the individual! You know it seems, A lot of people in the spinal cord injury community are pro choice ( course spinal cord injuries come in all shapes and sizes, implications it's a very vague term to say the least). But I see the majority saying the choice needs to be made after a few years, can't be made right at the time of injury! Well, I ask why? I think, if you say no leave me then that's just what they should do, but in most cases you should be taken to the hospital based on where your injury was and severity, you should be given a lowdown on the most likely outcome the full implications and lifestyle that is in store, then YOU should be given a choice! Nobody, NOBODY should be forced into a life of dependency, with these kind of procedures!

    You know it's funny, all the nurses, all the psychiatrist, even people in general when I was in acute care and rehab even to this day but to a much lesser extent. Would always tell me " oh you're so strong", "you're an inspiration", along with all the ridiculous poster everywhere ( One of which had a man playing sled hockey stating "they told him he'd never walk again, he became a sled hockey champion, he proved them wrong") it became so repetitive I started to wonder what were they trying to do, was I supposed to hear it, see it so often that slowly I start to believe it. And I looked back at the many times of my life, suffering head injuries still pursuing fighting/military, standing my groundwhen most took off, not being scared to speak my mind,disappearing walking my ass wherever I needed to go not calling mommy and daddy like every other kid; people would say oh you got balls, but never did it need to be said you just knew, It wasn't to prove anything ( maybe only to yourself which is all that matters) it was just who I was, it never had to be said... I look back at times when I dropped somebody, or I lifted a ridiculous amount I felt it I felt strong. Now I get my own shirt on, or make some weird movement in physio etc I get congratulated?? I go on vacation, I work to help start a business, I get in a hand cycle or dung buddy i'm an inspiration, I am supposed be proud of myself because of my injury it's some kind of "extra strong" added accomplishment!? Funny every single one of thous mornings I remember someone pulled the shit out of my ass, then help me out of bed help me get ready they were/are only reason I can even go out to do any of these things (with help), they lifted me into whatever or wherever I needed, grab things I needed etc. etc.! So who did it again that's what I'm always wondering, you should see the rehab shrinks face when I asked that question haha.

    I'm a simple man, I believe that if you can't shit on your own anyway that you have to do it just on your own that's not a life worth living. If I was completely able bodied and they offered me millions of dollars, but I would have to get bowel care done by nurses every other day Id still choose the firing squad! Because the line is CROSSED! And then Im told I'm depressed, because I don't want to be cleaned, carried, and penetrated through life!! And the only way that that won't happen anymore is death! Fuck the spasms, fuck the nerve pain, screw the physical pain that's a joke I get severe dysreflexia on a daily basis should be on so many drugs but I don't need to because I can take it. I bitch and ask questions about it to manage/learn about it for one reason, because I'm trapped! I am very much trapped. I'm not talking about being trapped in physical pain, I'm trapped in dependency, the more I want to do the more I got to spend and ask, lots of ugly oh so precious procedures along the way! Truth is if I have a stroke, guess what they're going to, save my ass, yeah..

    Some of you may be thinking saying "ooo your not the only one" or "your stuck in self pity". if you could only know, outside of what I'm writing you would know that very much is not the truth. I have read some of the saddest things I've ever read since my injury that hit me far harder then the day they told me this was permanent ( which was laughable, they thought it was going to be serious and surprising). Like the poor guy in Quebec c2 injury that recently tried to take his life the only way possible starvation (I know yet another one XD) The man went through it for over three months but wouldn't die, it just wouldn't shut down for all intensive purposes he was dead but not that last little bit so the generous moral bounding doctor finally finished him off.

    And these doctors, and these religious bishops going on and on against it how it's immoral. I just don't get it, how is it so much better, how do they feel they'll sleep so much better knowing that they left some poor bastard trapped in a hospital bed eyes rolled back, enough drugs to make him drool, laying in his own filth till a nurse notices the smell for as long as possible until he's finally dead. "Human life is precious", well let's get our heads out of our own asses and/or coping mechanisms and go on a field trip we will find many examples of human life and aspects of human life that are far from precious, I'll let you see things done to me that you may vomit or question "why would you do that to me, I don't want to see that" what it's keeping me alive I'm a human must be A precious thing to keep such a precious being alive. Earth is precious,remember that when it's completely dead because of us cancerous little precious things! Is a paedophile precious? Or is it only people that fit the happy go lucky parameters of someone's perception, Meet the criteria To be considered precious?.

    Look Our life should be treasured, it is a beautiful thing for the most part, but most of its beauty comes in the fact that we want (most have to) to believe that, because it's all we really know to be 100% without a doubt real. So we take ourselves very seriously, we say what we need to, we tell ourselves what we need to hear, to believe what we want to. And most of all we disregard what we don't like, often we hide from it pretend it's not there whatever it is Global warming, people starving, things we cant do, things were scared of etc. But even knowing this is all we know there is always a line, and the line is different for everyone! If you don't have a line that you have no principles, therefore you really have no integrity! I lost all respect for Stephen Hawking's when I seen a quote of him talking about his disability where he said a lot of things but finished with "and you know the things I can't do, which isn't very much" how does a guy as smart as him lead himself to such delusion. There's only one disabled person I've ever truly respected and I probably ever will respect that was Christopher Reeves and it was after I watched a lot of his interviews and he called it "denial with a capital D" he could admit to the world that his injury was a tragedy, and many times he cries but always back to the drawing board. He sure as hell wasn't just going to live with it and he put his body on the line and he went for it! He never lied to himself, he never try to sugarcoat a tragedy to hide from it, and he actually took it on;sadly he failed but it was one hell of a go and far from a failure... I'll never speak for someone else, but you know what I think his line was crossed, and the way he justified staying across it was getting back over it and making sure it didn't happen to anyone else.

    How many people are trapped in some building unable to even blink or keep the drool in they're mouth,and modern medicine technically calls that a treatment! Put eyedrops in their eyes, wipe the drool, deal with their "Bodily functions" give antipsychotics, antidepressants, painkillers etc. and repeat... They consider what they gave me and other high quadriplegics treatment just get taken care of every day, have them manage your "bodily functions" I just don't get it, it's just wrong. And I think it just comes from the fear we all have, death. And as society becomes more and more pampering, and we become weaker and weakermore dependent on various thingsit'll just keep getting worse. Death is terrifying, it's not an option, everyone will avoid death at any cost no matter what, anybody that thinks otherwise is depressed no matter what XD.
    Last edited by JamesMcM; 06-17-2016 at 08:07 PM.

  2. #2
    Senior Member Oddity's Avatar
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    Shit or get off the pot IMO.
    "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

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

  3. #3
    Quote Originally Posted by Oddity View Post
    Shit or get off the pot IMO.
    I totally agree with you, but sadly it's not that simple for many people. I see you making this guesture a lot, the problem I think you have is you're so caught up in your own disability paraplegic almost has as many options as an AB person, more importantly they can do it privately and quickly. you don't understand the full complications of when you lose most of or all of your body, and/or riddled with sickness. Another thing is when people are just pretty much dead but still technically alive, they can't make ANY decisions, They can't even resort to starvation because they're often be fed through a tube. For all we know they could be trapped inside their head screaming at the top of their lungs, but no noise comes out! That possibility, I believe is why they continue to give people painkillers, antidepressants, antipsychotic even though they can't express sadness, pain etc. for all we know cant even register any of what thous drugs prevent.

    Nonetheless the point I'm making is it shouldn't even have to come to suicide for people in my or similar situations. However In many cases assistances would be necessary,sometimes the disease doesn't quite cut it unfortunately.
    Last edited by JamesMcM; 06-17-2016 at 10:43 PM.

  4. #4
    James, as a high level tetra I can understand where you are coming from but the reality is that so few others understand what it is like to live like this. The total loss of independence and reliance on others for even the simplest of tasks is not something they've experienced. Tbh I expected more interaction with high level tetra's here and the other SCI forum I use but it is minimal to say the least and more often than not I get paras responding to threads who have absolutely no idea but chime in as they think it's useful wtf?? They don't understand that we see them as close to AB.

    To prevent being kept alive when I can't communicate I have Advance Directives in place which specifically prevent treatment if I can't communicate verbally or electronically as I do now. My doctor is aware of the terms and knows that I'm not prepared to exist just because science can keep me alive. I'd also said that I wouldn't go into hospital again but last week did go in for one night. My breathing had deteriorated to a point where my vent plus 15 litres/min of oxygen wasn't enough to stop me de-satting. On one de-sat I gradually dropped to 62%and genuinely thought that we couldn't stop it, was being looked after by my wife and most loyal carer and they thought it was the end as well but couldn't do anything as I've requested no emergency treatment. Somehow managed to stop the de-sat and had a long talk to them about it, the outcome of which was to go into hospital the next day where tests were done quickly, my chest drained overnight with 3.7 litres of fluid drained off it! I'd set my line and made it clear I'd only stay in there one night.

    We all set our own lines, I hate being handled, rolled, hoisted and we keep it to an absolute minimum. Bowels I still can't accept 3 years in, I don't think I ever will, I'm rolled onto my side, close my eyes and switch off. TBH thi is how I deal with most things, eyes closed pretending it isn't happening, it's the only way I get through life. I've been lucky apart from one psychologist in hospital who prevented me having my vent switched off on the grounds I was depressed and hadn't had time to adjust my doctors have been sympathetic and know what I want, they know what this is doing to me and will help when the time comes which hopefully won't be too long.

  5. #5
    Quote Originally Posted by mrb View Post
    James, as a high level tetra I can understand where you are coming from but the reality is that so few others understand what it is like to live like this. The total loss of independence and reliance on others for even the simplest of tasks is not something they've experienced. Tbh I expected more interaction with high level tetra's here and the other SCI forum I use but it is minimal to say the least and more often than not I get paras responding to threads who have absolutely no idea but chime in as they think it's useful wtf?? They don't understand that we see them as close to AB.

    To prevent being kept alive when I can't communicate I have Advance Directives in place which specifically prevent treatment if I can't communicate verbally or electronically as I do now. My doctor is aware of the terms and knows that I'm not prepared to exist just because science can keep me alive. I'd also said that I wouldn't go into hospital again but last week did go in for one night. My breathing had deteriorated to a point where my vent plus 15 litres/min of oxygen wasn't enough to stop me de-satting. On one de-sat I gradually dropped to 62%and genuinely thought that we couldn't stop it, was being looked after by my wife and most loyal carer and they thought it was the end as well but couldn't do anything as I've requested no emergency treatment. Somehow managed to stop the de-sat and had a long talk to them about it, the outcome of which was to go into hospital the next day where tests were done quickly, my chest drained overnight with 3.7 litres of fluid drained off it! I'd set my line and made it clear I'd only stay in there one night.

    We all set our own lines, I hate being handled, rolled, hoisted and we keep it to an absolute minimum. Bowels I still can't accept 3 years in, I don't think I ever will, I'm rolled onto my side, close my eyes and switch off. TBH thi is how I deal with most things, eyes closed pretending it isn't happening, it's the only way I get through life. I've been lucky apart from one psychologist in hospital who prevented me having my vent switched off on the grounds I was depressed and hadn't had time to adjust my doctors have been sympathetic and know what I want, they know what this is doing to me and will help when the time comes which hopefully won't be too long.
    I know exactly what you mean, that's probably the only time I'm thankful I can't feel my body ( disturbing thought/mentality) when their fondling/cleaning my dick and other areas, when their digging in my ass I just go blank. When you're being rolled around dressed cleaned i'm often blown away at how disgusting and pathetic it is, even more purplexed that this is modern medicine treatment idea of a solution! But I'm always left wondering what's the appropriate way to respond to what's happening, if I'm all chatty trying to be happy Im just basically delusional accepting indignity couldn't be any lower in my eyes, so it's just go blank! " I don't think I ever will" well that's because you have integrity, and principles and they are still intact, you didnt just bump your spinal cord and listen to rehab tell you oh now it's perfectly acceptable to shit yourself... But the fact of the matter is the mind does succumb even to the most of disgusting of scenarios. As the mother of dragons ( Game of thrones ) "People learn to love their chains" by God is my witness I hope I never do!

    your injury is much worse than mine, I can breathe on my own and I have some on puncheon not enough to do anything substantial but enough to do a few things. And there's only one thing worse, I completely understand paraplegics perspective and you're absolutely right they just don't understand they realize that their injury was very tragic and hard on them and rightfully so, but they just don't know how bad it really could've been as you said you don't understand what it is to not be able to make a choice on their own. But what I find worse is incomplete quadriplegic's or C7 C8 A lot of which who basically function similar to paraplegics, a little less efficiently obviously but a lot of those incompletes get their Core stability back among many other things and they live pretty much independently, throw themselves in it out of bed whatever they want . Often times their bladder is very calm easily manageable their secondary complications just don't get asout of control. Which there's a is a difference between complete and incomplete on that regard. But there still classified quadriplegic, sothey think they're in the same boat or worse they just think they worked harder than you!! God damn I would love to be in incomplete injury completely ambulatory on my own, and remain so ignorant!


    I digress, but the doctor that would not take you off, when your entire body including your lungs were dead should be shot and pissed on. I'm serious, I don't understand that Mentality as I said with a lifestyle of dependency, procedures like bowel care etc. nobody should be forced into that, depressed or not. It is completely rational and justifiable to rather be dead than live like that! The notion that you should live dependent for a few years first is just stupidity, made by people with no real integrity! I wonder how many studies showing that a sugar pill is just as effective for treating depression it'll take before they start realizing that depression is kind of bullshit and we have no idea what were talking about. Or maybe they know exactly what they're talking about in terms of selling drugs to the na?ve, includes the doctors giving them out.
    Last edited by JamesMcM; 06-19-2016 at 09:03 PM.

  6. #6
    Quote Originally Posted by JamesMcM View Post
    snip...

    Obviously Science needs to move forward faster, bring new treatments to the most complicated of injuries and diseases! But until then is there ever a point where the line should be drawn?

    snip...
    First answer. Who says science or medicine can cure or heal every type of disease or injury?

    Second answer. It's call a living will when that line is drawn and all medical procedures are stopped.


    Ti
    "We must overcome difficulties rather than being overcome by difficulties."

  7. #7
    Senior Member lynnifer's Avatar
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    Think that's embarressing? I was 15, in hospital after flap surgery and got my period and couldn't feel it on the vertical pillow bed .. and of course I had a male nurse that night.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

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  8. #8
    Quote Originally Posted by JamesMcM View Post
    I totally agree with you, but sadly it's not that simple for many people. I see you making this guesture a lot, the problem I think you have is you're so caught up in your own disability paraplegic almost has as many options as an AB person, more importantly they can do it privately and quickly. you don't understand the full complications of when you lose most of or all of your body, and/or riddled with sickness. Another thing is when people are just pretty much dead but still technically alive, they can't make ANY decisions, They can't even resort to starvation because they're often be fed through a tube. For all we know they could be trapped inside their head screaming at the top of their lungs, but no noise comes out! That possibility, I believe is why they continue to give people painkillers, antidepressants, antipsychotic even though they can't express sadness, pain etc. for all we know cant even register any of what thous drugs prevent.

    Nonetheless the point I'm making is it shouldn't even have to come to suicide for people in my or similar situations. However In many cases assistances would be necessary,sometimes the disease doesn't quite cut it unfortunately.
    I hate paras. They have no idea what the quad life is like. Hell, i can't even imagine what high quad life is like but i don't even consider being a para as being that bad of a disability.

  9. #9
    Quote Originally Posted by lynnifer View Post
    Think that's embarressing? I was 15, in hospital after flap surgery and got my period and couldn't feel it on the vertical pillow bed .. and of course I had a male nurse that night.
    ONEtime I decided that I would be fine to take the train down by myself to go to my friends party, no caregiver and just catch the train back in the morning. I shit my pants at that the party, real bad and had my best friends since grade one pull the diarrhoea out of my ass and wipe me up. When the night is winding down I said I was just going to sit in my chair, he could tell something was wrong probably the smell or the fact I dripped all over his hose many probably mentioned something, I tried to make something up he told me there was no way he was going to let me sit in it I begged him but couldn't stop him. I'm very sorry that happened to you that is awful that is undignified very embarrassing however Don't compare a one time thing, to something we have to have done to us ( not on our own ) on a daily basis!
    Last edited by JamesMcM; 06-20-2016 at 09:48 PM.

  10. #10
    Quote Originally Posted by titanium4motion View Post
    First answer. Who says science or medicine can cure or heal every type of disease or injury?

    Second answer. It's call a living will when that line is drawn and all medical procedures are stopped.


    Ti
    It obviously can't right now, but that is exactly why science needs to continue moving forward quickly with us pushing it forward faster! in the future I believe many things we consider impossible to be treatable Will become not necessarily curable but very much treatable (funds provided ). Even disabilities you're born with could be picked up before birth and repaired in development genetically. Gene therapies have massive potential!

    I agree that is an option, in fact I believe it should be mandatory for everyone to have a living will and advanced directive made when you're 18. But it is far from perfect, Because so many people never think of it happening, let alone think to have one made! Also a lot of people aren't informed about the full implications of these disability or diseases when I chose to die at the accident site I basically made that conclusion because I would never fight again I had no idea of the undignified procedures and dependent lifestyle that was in store for me!! Most importantly they only go so far, if the disease or injury doesn't kill you even if no medical intervention takes place, you're screwed and if you become brain-dead it is most likely you will be taken care of either by the hospital or by a family member's themselves or their direction. Also living wills are not readily available, ambulance picks you up they don't check for a living will you could get into surgeryand the lethal part could pass Long before the person that was supposed to bring your LivingWell gets there! Especially if they're a close friend or family member, and are so preoccupied with dealing with stress such a situation causes to them so they probably don't even think of it in most cases...

    Nobody should have to resort to rotting and/or starvation to escape indignity,yet so many have and somebody will continue to!
    Last edited by JamesMcM; 06-20-2016 at 09:54 PM.

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