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Thread: When is the line drawn?

  1. #21
    We have to force our selves to do everything. It is part of the chore. I have thought a lot about how long I will live with this disease.
    I am in a lot of pain and it overtakes me all the time. Plus it is all I fight with.
    Trying to determine the end isn't going to be fair but you should have that right. I feel like that has been taken away from me because you are supposed to be happy and look forward to things like enjoying a meal or cup of coffee.
    Your situation is difficult and I understand every word you are saying about sci life and when you have had enough.

  2. #22
    Quote Originally Posted by mrb View Post
    Keeping me alive was called duty of care although no-one actually cared about my wishes. My first words coming round in ICU were "turn the machines off" but no-one did despite me asking a lot more times and then trying to chew through the breathing pipe.
    I see it the same way you do, you wouldn't keep a pet alive like this, I'm totally dependent on others and have little quality of life, yeah, I work, go on my fes bike, get out in my off road wheelchair but I force myself to do this just so I have some semblance of a life that doesn't involve being prodded or handled.
    One in the same man I feel for you, really do; I only wish you peace in a dignified manner best as possible! When that fucking guy found me in that swamp I told him to kill me pretty much assumed he'd have the capabilities to cave my head in that was a bit ridiculous of me, but at that moment although I wasn't panicking I had calm down took me about 30 seconds to do so, I just knew that with the dwindling air in my lungs I had to make sure that I wasn't saved! So when he declined my first request, I just told him to leave me, I remember in grabbing me pulling me close probably fucked me up saying that's not gonna happen whether it was him grabbing me or not that's when I drifted off...

    You and I, should not be here! With our conditions we should've been given a choice, the poor guy in Quebec that poor girl that did it in a group home to name a few should not of had to do that! It's pretty sickening, because at the end of the day each one of us were forced into all of the caregiving, all of the procedures that really made us question our existence, They may be gone though but it still happened to them and that's not right! These fucked up procedures made me lose all self-respect, made me hate The medical field, made me see a side of people,mentality that others call uplifting but make me sick to my stomach to be a part of/ associated with by default! I want a treatment for us more than anything, but I don't want anyone to live like this in the meantime if at any point time of injury, day after injury, year after injury they don't want to!
    Last edited by JamesMcM; 06-22-2016 at 10:06 PM.

  3. #23
    I can't argue with any of that James, we are intelligent and can make informed decisions what really winds me up is the medical professionals playing god and religious lunatics pretending they represent god. If god existed he'd f'cking step in and fix us or kill us not subject us to years of torture.

  4. #24
    I have to chime in.
    We live within in our own little worlds even if we don't like what has been given to us. Finding an answer to this life is not easy. everyday seems like a repeat of the day before and the next day will be the same. I question why I struggle so much. Mentally and physically. We have been dealt a shitty hand(literally as I have bowel problems) and get the joy(not) of having to live with a serious disability. Some injuries seem to be much worse than others. My injury is C-7 but it is high enough and bad enough that I seemed to be engulfed in misery. I ask why lots and do not have an answer. God seems to be punishing me for some horrible sin that I did when I was younger.
    My injury slowly overtook me over a period of 3 years and now all I do is pay.
    When they were going to operate to fuse my spine all I wanted to do was go under so I could have a break form pain.
    I have found that there is no answer and there is never a break so you just carry on.

    The medical system has failed me and will not be my friend.
    In this day and age it should not be so difficult and I hope it gets easier.
    My only point I guess is that we are here to be guineas pigs for the future of mankind and hope our little lives are of some value in to the future. The hear and now seems to just suck and getting through a day or a doctors appointment seems to take forever.
    Hopefully there is a reason for this and my life can make sense to me at some point.
    Being a bother to myself and others seems to come with the territory.

    Comparing myself to others in this world seems to just lead to more disappointment and is pointless.

    I wish there was a goal post and it was closer instead of being just out of reach all the time.

  5. #25
    God isn't punishing you, shit happened and you are dealing with the consequences. I stopped looking for answers a long time ago, probably just after I'd made the decision to stop it all. Even that wasn't possible the only answer is to be tortured until my body gives up and hopefully then the medical professionals will accept my wishes.

  6. #26
    Quote Originally Posted by stevegalliazzo View Post
    I have to chime in.
    We live within in our own little worlds even if we don't like what has been given to us. Finding an answer to this life is not easy. everyday seems like a repeat of the day before and the next day will be the same. I question why I struggle so much. Mentally and physically. We have been dealt a shitty hand(literally as I have bowel problems) and get the joy(not) of having to live with a serious disability. Some injuries seem to be much worse than others. My injury is C-7 but it is high enough and bad enough that I seemed to be engulfed in misery. I ask why lots and do not have an answer. God seems to be punishing me for some horrible sin that I did when I was younger.
    My injury slowly overtook me over a period of 3 years and now all I do is pay.
    When they were going to operate to fuse my spine all I wanted to do was go under so I could have a break form pain.
    I have found that there is no answer and there is never a break so you just carry on.

    The medical system has failed me and will not be my friend.
    In this day and age it should not be so difficult and I hope it gets easier.
    My only point I guess is that we are here to be guineas pigs for the future of mankind and hope our little lives are of some value in to the future. The hear and now seems to just suck and getting through a day or a doctors appointment seems to take forever.
    Hopefully there is a reason for this and my life can make sense to me at some point.
    Being a bother to myself and others seems to come with the territory.

    Comparing myself to others in this world seems to just lead to more disappointment and is pointless.

    I wish there was a goal post and it was closer instead of being just out of reach all the time.
    There's a difference of it being hard to carry-on, or finding a reason being difficult etc. to keeping someone alive just being wrong, not that it's easy, not that it's hard it's just plain wrong! That's where questionable things like disgusting undignified procedures, being dependent/burdensome, severely disfigured to the point you don't even look human, or worse not even really being alive just in a constant state of existence barely breathing yet still kept alive! The latter they will not find a point to live, they will not find ANYTHING! They are not there, they will sit and rot until something finally happens where they aren't able to bring them back! When it comes to high quadriplegia, completely different story but at the same time when you are so severely paralyzed you really have slim pickings in life, there are only so many options none of which they can actually be done independently whenever/ however you want to. With that in mind we are all still individuals, we enjoyed what we enjoy, we like what we like, we are who we are some people will never find something as simple as a hobby let along something as big as a purpose with options this Limited! At the same time even if they could if their line is crossed that does not matter, they will not want to find a purpose in such a "life".

    You're damn right we are the guinea pigs for the future, and we should be able to put/take any attempt to treat our disability if we'd rather be dead anyways, if we have no independence no freedom! Yes hopefully we benefit ourselves give us , Some reasonable function that others have been so fortunate to keep (so we can also be the ones making videos going up-and-down stairs, in and out of beds,showing how much we can still do etc. ), but also be a test and a evaluation to help move said treatment forward to perfection, so that nobody in the future ends up like us! But we don't even have that option, I'm sure most of us would pay even still.…

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