Me Before You

[JamesMcM]

Fair enough, on several points. I often skim the center of your posts, they are so long, and my attention span so short. I tend to focus on the first and last paragraphs with any amount of scutiny. I could indeed be missing much of the subtly of your points of view.

My feelings about Clayton are charged with the emotion of intimacy, and not a good barometer of anything other than themselves.

If you recall our earliest interactions, I was positing you didn't need to be miserable and you were positing that anything other than being miserable was being delusional. My intention was (and is) to present points of view that forward the idea that "misery is as misery does", rather than that of misery being an objective fact of a particular state of being.

For folks caught in the throes of misery this can really piss them off. I understand that. That's me being an asshole, preferring tough love over patting people on the head and commiserating. It's probably a good thing I'm not a professional counselor.

I went from trying to convince you that life could still be fulfilling to wondering why you'd continue to bother with living if you were so convinced of the opposite. Especially when you enable and commiserate with other people in pain, which is an even bigger tragedy IMO.

I don't like seeing people in pain, and I KNOW it is possible to transcend the pain of SCI (of any sort), because I've known SO MANY people that have done it, regardless of the level of SCI. I'll continue to push back against the idea that it's delusional to cope well and factual to hate one's existence. Just as I'm sure you'll continue to post about people's fingers up your butt, perhaps the most common theme across your many posts, almost fetish-like.


(And, the difference between para and quad are obvious, which is why I stick to ideas and comments that are universally applicable)

can't blame you there I have a lot to say, but I fully understand. Needless to say obviously that's going to lead to miscommunication; but who cares. At the same time despite my numerous mistakes both spelling and grammar I have been complimented on my writing many times, told to write actualLy as a writer by a few nuts. So Who knows, anyone ever has time to kill you might actually find something interesting at least. Anyways to it:

Yes but even if it was fitting to who I am to cope, I would never allow it I don't want it, there is literally nothing of substance worth doing, God sakes if you want to do anything you need somebody to walk you out like a dog and help you through the whole thing otherwise you're not doing it! And yeah I find it absolutely disgusting on many different levels for many of the different circumstances. But like chick I feel you only think there's coping or death, well guess it's my luck of the unlucky to live in a time where people are gaining subtle recovery even the most severe injuries, so there is the option to actually fight the injury. My animosity comes from the filth that is constantly shovelled our way in rehab, that's regurgitated by other disabled people and thrown around and nobody's thinking about that fight,A fight that if you were a part of in its success it would be an accomplishment of a lifetime few will ever live up to. it would literally change the world for the better undeniably. I started this thread because I look around, and it is and more relevant after that movie I was completely repulsed and literally ashamed to even be associated by default with such fragile individuals, diluted in a visual struggle to prove they still have meaning yet feeling so empowered it made my skin crawl, having the full picture of what their reality consist of did not help.

Look right off the get-go, in the rehab centres on the walls, the doctors, peer support you're going to hear a lot of stuff that is delusional that's just the reality there's no way around it, that's the best we can offer at this point. As I always make clear I speak from a perspective of dependency so I only speak of the most severe injuries that are fully dependent,and I couldn't feel stronger that is not acceptable way for a human being to live for a number of reasons. Obviously as a paraplegic you're not going to understand the full implications not necessarily just the injury but also of the different tactics that are used to help, what it is to be depended how you have to look at it, the difference in the mental damage for a whole host of reasons that impact varies based on the individual. As I had said with your kind of injury every day is dependent on your ability, it's done on your time and it requires your strength your resilience to get around your disability and get it done, I can see where the notion of respect and virtue comes from that. But when that is not the case, when one's strengths is irrelevant because it cannot be implemented and one is to just lay there and expect to be cared and coddled all of that mindset/ perspective is null and void,The variable of dignity verse indignity is also another thing entirely. So when I speak of all this delusion, you haven't even the slightest clue where I'm coming from I don't care if you know 200 quads that makes no difference. I believe when we start to get to the complete C5 and up that severe; alterations start happening to the mind again similar to Stockholm syndrome, institutionalization these are the two obvious very fitting examples that's why I keep repeating. Amongst this population you're more likely to hear the things like "through positivity, perseverance anything is possible", " i'm paralyzed from the neck down but I can still pretty much do anything", these are delusions to the very definition especially considering how strongly they believe it it's troubling, i've talked to people like this in person and my stomach literally turns that is not something one can do by choice that is a bodily response to something disruptive. These are also the kind of injuries where someone will comb their hair, and genuinely consider it an accomplishment, they will have caregivers come in three times a day and despite not being able to go out on their own especially if they want to do anything substantial they will still consider themselves independent, as if there is a new dictionary once you become disabled. So you're not going to tell me the people that live mostly only able to move their face do not reach a point of delusion, I have seen it for myself, I've read it countless amount of times it is not paraplegia, it is not incomplete quadriplegia in this situation almost nothing can move nothing can be done without waiting for help, life becomes a schedule structured for the people that have to help you; bedtime comes back from its abysmal grave after the age of 10, The body can feel nothing; no signals go to the brain in darkness the body is gone eyesight is the only awareness I could go on and on. But this is completely against nature in every way possible from how the body manages it filths, to the bodies mechanics and structural needs, to what the mind and the body needs.

And I have also gone into the subject again mostly pertaining to the most severe injuries,that individuality and individual circumstance plays a huge role in "coping" some people it will never happen, some people are more predisposed to it, for some it will be harder for others it'll be easier and everything in between. Clayton despite being an independent was never going to cope.I understand you knew him personally and that makes it as you said and intimate. But we all got a very real look into the depths of his perspective and individuality in relevance to sci. It was never going to happen, even if it could he did not want it to happen that much he made clear before he left.

All the many people that you know that have lived with it, are the reason that people like me who asked and then resorted to begging to let nature take it's course were denied that right. because like you said "so many" people have accepting it we were thrown in with that lot, a massive generalization and assumption that "hey with enough time he'll realize that he would rather keep breathing even if it means being completely dependent"! so in a way those people are responsible for the suffering that some individuals have had to go to by resorting to starvation for months to escape the life that was chosen for them, that they were never going to accept that amount of conviction and commitment makes that really obvious even more obvious than writing a very angry book that says more than any amount of words could ever hope to say. Also the fact that the disabled community as it is so hell-bent on worrying about themselves, coping, proving how active they are going out of their way to publicly express how much they love their life despite the disability, literally condoning the disability and it's continuous spread, but also nine times out of 10 putting no effort into actually fighting the disability for themselves and other people. As I've said many times there are no heroes amongst us, at least in the vast vast majority of the case... Instead we claim we are fighting the disability by living with it, delusion yes, but also only going to benefit the coping mechanism of the individual saying that crap sure as hell is not a benefit to any of the many people that are having their lives ruined as we speak! Yay spinal cord injury community pat ourselves on the back,let's continue to go on about how incredibly tough we are, ya, cool another few decades maybe even a century of untreated spinal cord injuries all on us. I always figure we the most severely afflicted, should know better, we should have the greatest desire to do something for ourselves but also because we know the full damage that can be dealt, and it is people in our condition that have resorted to be months of starvation not the lower injuries, ours... And since we have the full knowledge we are by far the most responsible and guilty!

Your last comment that I can't even type the word literally made my fucking soul drop, then I thought about your luxurious lifestyle how you handle all that on your own for a second I filled with rage and I had that life in me then I realize what am I gonna do with that I'm severely crippled even if he was my neighbour and a lollypop I couldn't do anything. But you can basically ##%%## ###%%^***++ $$&&$&& twice around the block if you please, that would be appropriate for saying that kind of shit! I wish I was delusional enough to say Karma is a bitch and take even the slightest satisfaction from it, but I just feel retarded for saying it, so take that...

[JamesMcM]

SOMEWHERE on my many hard drives, I have a pdf that Clayton wrote(book) detailing his life before and after SCI, and why he was going to 'off' himself. Bob Clark sent it to me right after Clayton killed himself. As most of the older folks here know, Bb and I were friends and spoke together much, played games online together. His brother killed himself, my sister killed herself, both able bodied people. Bob was more sympathetic to Clayton's condition than I. I am of the mind that suicide is a non-option, or at it's "best", something best put off for a LONG time. I will have to find it. If I remember correctly, Clayton only sent it to Bob/ or maybe a select few.
I think JamesMcM is caught in the vicious circle of self pity that is impossible to break away from because he spends so much time concentrating on self and trying to rationalize his feelings to others. If a tenth of that enery were focused on the more positive items which he says he is working towards, it would break the cycle. There were a few high level quads here years ago that I wish were around to voice their opinions. I doubt it would penetrate his barrier at this time though. As one who 'gave up on myself' when I came out of the coma early on and found myself overwhelmed with joy that I was STILL alive, he's not going to pay much attention to what I say. Sure, as one who could only roll my head from side to side, speak in a quiet voice and had to be spoonfed for almost a month with a feeding tube at the same time, I was caving in to the realization that I couldn't live a normal life BUT never desired to off myself. What a wimp. I just hang in there and deluded myself that it was all good. Gradually, I got the full use of my arms and hands back, I thank God for that also, but I still had to have a few different folks digging crap out of me with there big old fingers for a few months. By the time the first couple months were up, I had resolved that since I can't feel it, it doesn't matter. I look back on the time that I told the nurses I didn't NEED to learn how to do a bowel program, I was fine with letting it come out on it's own and someone rolling me over and cleaning me up, because I couldn't fathom the thought that at some point in time, when I if I ever could use my arms and hands, it was gonna be ME that was digging the crap out! At that point I was fine talking about the Rockets or Astros to the guy cleaning my pipes or gardening and how to teach your kids to ride a bike to the women who had the unfortunate duty, just glad I wasn't able yet. Seems strange now, looking back on it. Similar to boot camp, when I learned I was going to have to be part of a team and excel as a group, instead of concentrating on myself being 'above and beyond' the 'others'. Hmmph...strange indeed.
WelP, let me find that book Clayton wrote. If I can locate it, I'll upload it to James. He will have a good read of someone who thinks like he does, albeit a much lower level of injury. May take a few days, today is the Sabbath, I got up early to study a bit in the Bible before church later and mistakenly hit my browser icon, answered a pm and wound up perusing a bit.
James, if you will, hit up the thread where I posted a link to some vids in the religion and spirituality forum. Scan the synopsis of a few of them, if any catch your eye, they are free. I hope you find your way out of the funk you are in, that you call your reality, I really do. When I got the news that my sister, at 46, had put a gun to her heart and killed herself, it hurt me more than my sci. It destroyed my mom and my brother and sister living, changed them forever. Not to mention her two daughters. There is a reason some of us term it a selfish choice. It's similar to the breakup of a real marriage, in that it spills over into OTHERS lives. You just took the easy way out.

Yeah I'm sorry my wimpiness cannot be redeemed by your unbending courage which was truly shown during a few months of dependency welcoming it with open arms, dignity, being a burden, honor, freedom, principles what are those right. Sounds like stuff for a bunch of cowards, I truly Trimble in your sheer strength and empowerment, you are definitely a hero...

By the way I read what Clayton wrote The man perform seppukku on the premise that he was dishonouring himself, yeah whimp keep telling yourself that...

Look dude sorry about your sister, but when your life you know like the rest of it not a few months is going to be fully paralyzed completely dependent for the rest your life ending your life is completely rational, in fact I think in some cases it's the appropriate action to take! I was just too much of a wimp to go through with it The one chance I had in private, I was by my old pond filthy thing hate water especially that kind of swamp water. anyways there were other factors as well, Family, a girl that had become very close to me at the time and let's just say I was going through stuff was very prominent on my mind as selfish as you seem to assume I am and overwhelmed with self-pity, good generalization and analysis from post on a spinal cord injuries fourm on how I conduct my entire life btw nailed it on the head . But my pity extends far out for just me it extends to anyone that's going to end up with my injury or worse, that was another reason that I couldn't get to do it I had nothing to contribute, maybe $10,000 this is also the main reason why I didn't let the most recent kidney infection I recently had spread i've live like this for over four years heading towards five, not long in the grand scheme of other people but for at least two years I have had a plan to contribute and I'll be damned if I succumb to such a lifestyle, witnessed the atrocity of it and do nothing to justify what I allow to be done to me and more importantly help the cause to contribute in ending this horrible condition luckily there's a few ways I can go about that alive or dead I'll play my part for the greatest cause there is for someone in my position. certainly more than you have, oh look I'm getting defensive how pathetic it doesn't matter what you done you contribute nothing to the cause whatever it just like well 90% of all these so-called selfless not riddled with self-pity spinal cord injury individuals . I'm not going to use that as justification to follow the same path and contribute nothing, something far more than just reading a fucking Bible claiming to be tough simply because you're disabled.

I've dedicated the last two years of my time to play my part, fact is I look at my drop foot I look at my osteoporosis, my bladder shrinkage, organ damage, synrix etc I'm not delusional also I look at the status of the research I know it's not going to benefit me, you think that's going to remotely make me hesitant to Still contribute it's bigger than me, I started this thread to emphasize our ineptitude towards the cause, not to whine about self-pity but I did get sidetracked and that's my own fault. Take a look at the poll I made in cure most people concluded that if the research was not going to benefit them they wouldn't bother. As usual people failed to get the head out of their own ass and realize that this is happening to people every day, and a lot of them are not nearly as lucky and luxurious as you in terms of your injury. self-pity went out the window along time ago, don't mistaken my repeated analytics on the situation as a whole as self-pity. ( also keep in mind I'm responding to a few people at the same time ) But sadly it's not as simple as waking up and saying I'm going to work really hard today, I have to work around other people schedules. in order for me to even get a proper diet I have my caregiver schedule pretty much stretched to its limit,not to mention going to physio twice a weekoutside of that I'm only as good as where the Internet stretches on an iPad (although I'm not supposed to use it or drive my wheelchair much given the Tendinosis in both my shoulders yes I made a big mistake typing all of this somehow not supposed to use my arms for three months )and in terms of the real world I'm only as good as the caregiving support I can muster will allow. That's not making excuses that's the reality and gravity of the situation, I'm sure it's hard to understand despite your one month in a similar circumstance. Your health problems are probably awfully nice to, well in context of the disabilities,, yeah in actuality all said and done I may not even have to resort to suicide that's a strong possibility for sure., ooo that na?ve ignorance kind of pissed me off. The fetish comment kind of started this rubbish god that was just so wrong oddity. Lowest blow you could go to, can't entirely blame you but my God

[lynnifer]

At the time though, Cap didn't know he was going to recover. I too could not even hold my head up and drooled. My parents brought the minister from back home. I recovered well within two weeks though - to a simple paraplegic.

I remember the time when Clayton was here and the open discussions he had about life's worth ... Clayton was super intelligent, but there is a fine line between genius and insanity. I do believe he drove himself insane. He could have been such a voice for treatments ... I still mourn his potential ... but he decided his life wasn't worth that I guess. Ours neither. We all lost out on 'what could have been.'

Cap has had some dire struggles with health that he has documented here way before you came along ...

Everyone is just trying to help James but you keep rejecting them. Tell us what you're doing for 'the cause' and maybe we can work altogether.

This life can really suck. Even worse if you have to be dependent .. we're all going to be there one day disabled or not. I'm sorry I can't wave a magic wand and make it go away.

[Timaru]

I remember the time when Clayton was here and the open discussions he had about life's worth ... Clayton was super intelligent, but there is a fine line between genius and insanity. I do believe he drove himself insane. He could have been such a voice for treatments ... I still mourn his potential ... but he decided his life wasn't worth that I guess. Ours neither. We all lost out on 'what could have been.'

Bob also sent me Clayton's "blog" written as he stabbed himself and was watching himself bleed to death, it was disturbingly descriptive, he was signing off as he died.

This was not the action of a sane mind.

[chick]

Bob also sent me Clayton's "blog" written as he stabbed himself and was watching himself bleed to death, it was disturbingly descriptive, he was signing off as he died.

This was not the action of a sane mind.

That was the action of a very sane and calculating mind. It was thoroughly crafted to entertain and manipulate the reader. It was theater. A disingenuous and deceptive show.

[CapnGimp]

That was the action of a very sane and calculating mind. It was thoroughly crafted to entertain and manipulate the reader. It was theater. A disingenuous and deceptive show.

That's what I felt/thought also, then and now. My sister left a letter to my Mom beside her. Blaming the woes of her entire life on our mother. I will add, (I think I am the only one here who believes in the Creator God, but in His Word, suicide is attributed to satan, who deceives man into believing in no God), hence no hope and the final act of rejection. The despicable act of trying to drag others down with them, is the signature of satan.

Once again James, we as individuals are here NOT to berate you, but to try to help you. We have been in this boat, albeit in different seats with different views, but we are in the same boat. Think back to the years of your life BEFORE injury. Were you a hard driven charger for cure of sci? I speak for myself, nope. Still contribute little to the 'cure' cause. I have, rather, spent my time trying to help others, not JUST sci, to live better lives in this world. If you had 10 million dollars it wouldn't be a drop in the bucket of what has been spent in my 20+ years of sci, documented on this site,toward the 'cure'. I concentrate my energies in doing EFFECTIVE labor to improving lives. I have watched countless millions poured into a bottomless pit of dead end research, cretins taking money and blowing it on personal gain, etc., well documented on THIS site, over the same span of time. I see many selfless laborers dedicating their lives to the 'cure', Dr. Wise the chiefest among those, who makes this site available to us as a community, so we can pool our collective wisdom and disseminate it to the world, for the greater good of us all. It's a place you can come to to get real world information from people who live it, day to day. A place where you can find those who have truly got your back, also a place to come lean on someone's shoulder until you can go again on your own. At some point, as others have said, it boils down to 2 choices, get on with living or wallow in the mire. I can't tell you how to live your life and don't want to. I can only say what you are doing to yourself now, in your internal struggles, are not beneficial to you and will only run off those close to you in the long run. I'm going to stay out of your business from this point forward my friend, I have watched many threads like this over the years, some of them change mindsets, some don't. I hope you find peace.
John

[JamesMcM]

At the time though, Cap didn't know he was going to recover. I too could not even hold my head up and drooled. My parents brought the minister from back home. I recovered well within two weeks though - to a simple paraplegic.

I remember the time when Clayton was here and the open discussions he had about life's worth ... Clayton was super intelligent, but there is a fine line between genius and insanity. I do believe he drove himself insane. He could have been such a voice for treatments ... I still mourn his potential ... but he decided his life wasn't worth that I guess. Ours neither. We all lost out on 'what could have been.'

Cap has had some dire struggles with health that he has documented here way before you came along ...

Everyone is just trying to help James but you keep rejecting them. Tell us what you're doing for 'the cause' and maybe we can work altogether.

This life can really suck. Even worse if you have to be dependent .. we're all going to be there one day disabled or not. I'm sorry I can't wave a magic wand and make it go away.

But they're not trying to help, it's the same shit trying to make me fall of the generic path that 95% of spinal cord injuries have followed despite the fact that 90% of able-bodied people say they'd rather be dead than paralyzed from the neck down being a burden, yet it happens and nobody commits,bummed spinal cord principles life expectations of the window use reverse psychology and naive cop outs (usually related to age) to justify. This is just yet another reason that I cannot find value in this interpretation of "strength". The value I have first right is in its rarity, something so few can do. Estimated 100 million people paralyzed worldwide, and more coming anyone can do it if they want to, in fact most do it even when they don't want to!

Ohh boo hoo for him! I mean come on, a month of dependency even if it was six months that doesn't have the same impact doesn't have the same animosity. I've been on the death door a few times this year, septic was serious, then it was backflow with test indicating very strange blood work in this case looks like pancreatitis, is in the hospital getting fluids like that for a four days we don't know if it's going to get worse and a inflamed spleen. I completely crashed my lungs when this first happened, I was a C-5 injury they had to spend nine months in hospital because my lungs would not expand, on a ventilatornot common for that level, lead to pneumonia. neglect lead to stage 4 bed sore, which led to MRSA and a serious blood infection. After month got rid of the blood infection MRSA stayedthat one took a few years. I've also had kidney stones, bladder stones, osteoporosis, so many infections that antibiotics come at me like skittles making E. coli in my bladder a superbug resistant to all orals. I got spasticity they don't have a proper scale to measure because it's way over five out of five , Tendon gnosis in my shoulder despite using a power chair, could be the fact my right shoulder is not properly functioning even for a C-5 ( The left one however does gets overused, sadly it does make sense )but it could also be from taking Cipro so much ( has a tendency to damage tendons, to the unlucky). So technically I'm not even supposed to be typing this, and I'm not supposed to be driving my power chair unnecessarily. Went to years never have a dysreflexia, to have a get five times a day usually unexplainable to the point where I just have no choice but to tolerate it and if it has a stroke thank God they recommended making a DNR, based on the situation and how are interpreted it. Just because he was injured before me doesn't mean I haven't fucking step through the minefield, I go to physiotherapy I eat a diet that few could ever commit to vitamin A- zinc perfectly adequate. And still it continues, I have an infection right now that I just have to tolerate until I get a fever because only IVs work now, my spasms are strong enough to rip straps and I have to be strapped chest to toe to stay in my chair wearing retarded foam boots 24 seven because spasms have caused so many bedsores ripping against the straps. Every night I have to put on braces just just keep my legs on the bed, they cost me $10,000 every night put them on, every morning take them off I cannot go anywhere without my braces therefore I can't really sleep anywhere other than home. Oh yes despite my diet, despite my religious health habits, still committed to twice a week two hours a day physiotherapy next year my right femur will have reached a state where standing can cause breaks the specialist thinks my spasms will break my legs within these next few years and they've been steadily getting worse, along with the dysreflexia... Ya
( I won't be rolling over on that one though, luckily he worked with me to figure out a plan I may be able to reverse the osteoporosis with vibration, nutrition and drugs) of course $20,000 machine, and better hope my caregivers will help or else I'm fucked yet again. Btw i'm just over 4 1/2 years in, my body did not respond well to Sci compared to every other quadriplegic I know even the other completes, one fucking guy has been using a condom catheter for almost 30 years and just now got his first stone. Honestly good for him he's a good guy but wow is there ever a variation. My most recent kidney infection, the doctors eyes almost popped out of his head as I told him I'm considering letting this spread ( i've made them less frequent but can't completely stop them, even if I did treat it one's going to be back in six months stronger than before) The one thing that stopped me was knowing that I didn't have that settlement in my bank account, which means if I died it would go right back to the rich crooked devil worshipping insurance company. I digress... All I know as sick as I have it, like I said I've never met quadriplegics this sick even the one C3 I know, and they all eat like shit one smokes. But there are The rare few, you'll never see on places like this you'll never hear from. One guys a c4 he gets dysreflexia for a reason they cannot explain ( by the way they don't understand dysreflexia, they give it their best shot, but they don't even know the long-term implications all they know is for a lot of people it happens with stimulus below the injury and it has disabled and killed people) but this poor guy they can explain, his get so bad he breaks out into seizures because of the blood pressure how spratic it is. And aside from that he can't even scratch his own nose. It's those rare circumstances that motivate me, that show me that you're gravity of the situation despite the fact they get swept under the rug, but that's the true colours of high quadriplegia , up there with serious ALS, pros and cons compared to terminal cancer etc doesn't matter what age.


for a second imagine if we all form together at least 50% of us and we went at it we demanded federal funding all we need is 10 million to help and NRT with the spinal stimulator we would have that within the year to tide us over until something better. We spoke up publicly said what's done to us on a daily basis, and saying that it's undignified and it's not fit for human life. As a dependent I'm completely at the mercy of others schedules, they have a pissy day I'm supposed to accommodate that, I have a pissy day "I can't work in this kind of environment", James I'm going to bed are you going to bed or are you sleeping in your chair tonight: Standard ultimatum of shit. I refuse to be an ass kisser and that's what this is. If you say I'm sick of paying you and following your schedule, then you have to rely on nursing agencies who are even worse you can't even get a proper diet in with them unless you have almost $9000 to spend each month it's ridiculous! We could change it, even the most chronic of injuries would have recovery of some kind that would have large impact, but we could eradicate chronic injuries from ever happening do you not think that that's a bigger accomplishment? I feel it deep down in my bones, Toronto Western has three injuries every day The majority of those yes are going to be paraplegics/ low quad that are going on and will live A life on their own terms, with their own abilities, their own schedule choose their own fucking bedtime as grown men and women. That's all that matters! But there is still a silent minority that will break their necks from C-5 or up severely enough where no amount of hard work or will power not to mention money will result in recovery without some kind of medical breakthrough. They'll be completely dependent, they deserve the same rights as almost everyone on this thread does.

Actually know plenty of people die in their own beds independently, and frankly I would rather Live fast and die long before I'm 90 with a colostomy that's an honest fact not much life to live at that point. In fact what I find so embarrassing is almost every elderly person says I'm managing my illness or disability, age related or not pretty well but when I becomw dependent that's when I draw the line. Rightfully fucking so, the elder lever some of the biggest supporters of assisted suicide in our country. So just because I'm 20 I'm a hero because I am embrace dependency, come on.

well then effort, I would like to work together but I feel like the only thing I contribute right now is solo, I have my symbol made, I'm waiting on website designers and I hope to start an organization; that if I'm not here my mom wants to continue. But I want to start a blog on it and start talking about injuries the way they need to be a voice for the silent minority, every single "motivational disabled video " you see is all paraplegics, incomplete injuries, or at the very worst low quadriplegic injuries. When they do make a video that includes a high complete quadriplegic, he is doing anything he's just being carried everywhere, and were supposed to praise eat each other because we get carried around and they try to let us participate as much as physically possible which is almost nothing. It's more Demotivational than anything. There's three technologies right now, that would lead to substantial recovery no matter how severe the injury. Of course various other tools would have to be implemented with them everything from electro stim,vibration, biofeedback etc. but we have the technology right now that's what is so maddening. But in order to help we need money lots of it, in order for me to go exercise for me to go to anything I need money because I need to pay someone to help I can't just say I'm gonna bust my ass today doesn't work like that anymore. I've made my will so everything I have goes to the labs I have chosen. As I said there's another settlement but it just May frankly be too far away, and it's a longshot it's almost guaranteed to be another chunk of money but I need it could benefit by injury may not be quite the highest, but it's as severe as it gets, in fact I don't have the proper function of a C-5 injury at least know when I see you. to be quite large which the lawyers that this possible but I just don't know if I can justify waiting for, and donating all of it would help but putting my body as the guinea pig, having a collaborative treatment in the Bahamas with reputable stem cells to be used along with a few other technologies, money is the incentive to get this done if I could get this broken old bones move know any injury could benefit by injury may not be quite the highest, but it's as severe as it gets.

Point is every last dollar I'd be willing to put into it, if somehow it all back fires and I've become more severely injured or it doesn't work and I don't recover at all and now I'm completely broke I'll just end my life,i'm fully prepared for that possibility; I pretty much prepared for it right now I don't know if I'm willing to wait to live like this anymore. If I were to spend all my money without serious benefit ( where I can return to work with my hands, go a day completely alone) I sure as hell won't be falling back on my family and/or welfare, I have expected enough help as it is I'm not collecting one cent of social assistance. hysterically, and foolishly I know the odds I play the lottery every week, same thing if I won every dollar i'll be putting into recover. As I said that simply donating is a start but if you have enough funds it's not the best approach because you don't know where that money goes,all of it won't go towards research and the treatment that's a fact. But when you're standing on the judicial fronts waiting, every little increase in the odds in the meantime even narrow victories are still worth a shot!

[JamesMcM]

That's what I felt/thought also, then and now. My sister left a letter to my Mom beside her. Blaming the woes of her entire life on our mother. I will add, (I think I am the only one here who believes in the Creator God, but in His Word, suicide is attributed to satan, who deceives man into believing in no God), hence no hope and the final act of rejection. The despicable act of trying to drag others down with them, is the signature of satan.

Once again James, we as individuals are here NOT to berate you, but to try to help you. We have been in this boat, albeit in different seats with different views, but we are in the same boat. Think back to the years of your life BEFORE injury. Were you a hard driven charger for cure of sci? I speak for myself, nope. Still contribute little to the 'cure' cause. I have, rather, spent my time trying to help others, not JUST sci, to live better lives in this world. If you had 10 million dollars it wouldn't be a drop in the bucket of what has been spent in my 20+ years of sci, documented on this site,toward the 'cure'. I concentrate my energies in doing EFFECTIVE labor to improving lives. I have watched countless millions poured into a bottomless pit of dead end research, cretins taking money and blowing it on personal gain, etc., well documented on THIS site, over the same span of time. I see many selfless laborers dedicating their lives to the 'cure', Dr. Wise the chiefest among those, who makes this site available to us as a community, so we can pool our collective wisdom and disseminate it to the world, for the greater good of us all. It's a place you can come to to get real world information from people who live it, day to day. A place where you can find those who have truly got your back, also a place to come lean on someone's shoulder until you can go again on your own. At some point, as others have said, it boils down to 2 choices, get on with living or wallow in the mire. I can't tell you how to live your life and don't want to. I can only say what you are doing to yourself now, in your internal struggles, are not beneficial to you and will only run off those close to you in the long run. I'm going to stay out of your business from this point forward my friend, I have watched many threads like this over the years, some of them change mindsets, some don't. I hope you find peace.
John

Man all the best, but we aren't even slightly in the same book; modern medicine needs to establish and get rid of that blantent mistake and misconception right quick bbecause it's Beyond wrong. I'm the lowest level of high quadriplegia, in terms of C-5 I got it as bad as it gets showing slight damage to C4 but only slightly there are still four vertebrae's who open up a whole host of nasty doors, and even farther limitation (when's the last time you really appreciated scratching your nose or your ear on command? I spent at least three months where I could not move my arms at all, even longer where I couldn't breathe on my own, and that still didn't even treat me the proper respect to such luxuries; to when it's gone for a lifetime) I'm not even in that book. That is no way to live delusional coping mechanisms or not! fish, lizard, rat, dog same thing, but human even more so. It's not right.

All I will say that that is just throwing money in donations is not enough, I explained that to Lynnifer clearly know why that isn't effective. That is not my plan because evidently it shown to be ineffective. Also know you do not have two choices cope or be miserable that's a Standard recycled sci copout. No matter how many people you've helped, it pales in comparison to if you were to help cure sci you can never help someone more than preventing them from ending up in quadriplegia, breathing on a ventilator. Saving a life is a matter of interpretation, not necessarily a good thing. I believe in a higher power, but in a more realistic sense, this God to put people physically dependent on other people to rest life that's not right I don't care what kind of golden ticket is at the end of it I'm not going to abide on that kind of ride, has nothing to do with me believe in Satan; it has to do with me being repulsed and disgusted to live like this completely and Utterly ashamed.

[Patton57]

I paid $6 to watch "Me Before You" and it was worth it if only to satisfy my curiousity. I liked that the lead character was free to choose his fate. I think the whole, I'm going to give this six month before I decide to pull the plug idea, is way too melodramatic. Traveling to a high end 'assisted suicide" clinic in Switzerland to go peacefully with your loved ones at your side is again way too melodramatic. Watching the bumble bee lady bounce around for the first 5 minutes was entertaining. I sure hope the book was more meaty than the movie though. The pretty people, money and scenery were nice backdrops.

I'm really surprised that they made and released this movie so close to "The Theory of Everything". That was a fantastic movie and inspiring story.

[alan]

Man all the best, but we aren't even slightly in the same book; modern medicine needs to establish and get rid of that blantent mistake and misconception right quick bbecause it's Beyond wrong. I'm the lowest level of high quadriplegia, in terms of C-5 I got it as bad as it gets showing slight damage to C4 but only slightly there are still four vertebrae's who open up a whole host of nasty doors, and even farther limitation (when's the last time you really appreciated scratching your nose or your ear on command? I spent at least three months where I could not move my arms at all, even longer where I couldn't breathe on my own, and that still didn't even treat me the proper respect to such luxuries; to when it's gone for a lifetime) I'm not even in that book. That is no way to live delusional coping mechanisms or not! fish, lizard, rat, dog same thing, but human even more so. It's not right.

All I will say that that is just throwing money in donations is not enough, I explained that to Lynnifer clearly know why that isn't effective. That is not my plan because evidently it shown to be ineffective. Also know you do not have two choices cope or be miserable that's a Standard recycled sci copout. No matter how many people you've helped, it pales in comparison to if you were to help cure sci you can never help someone more than preventing them from ending up in quadriplegia, breathing on a ventilator. Saving a life is a matter of interpretation, not necessarily a good thing. I believe in a higher power, but in a more realistic sense, this God to put people physically dependent on other people to rest life that's not right I don't care what kind of golden ticket is at the end of it I'm not going to abide on that kind of ride, has nothing to do with me believe in Satan; it has to do with me being repulsed and disgusted to live like this completely and Utterly ashamed.

I am not ashamed of this condition, despite the fact that some aspects of it are indeed disgusting. I want to expire, primarily because of the blasted pains. Being dependent also plays a part. I feel so incompetent compared to the quads of my level here, because don't know any ADLs, and even if I did, the ever worsening upper back pains and shoulder blade problems would be reducing my ability to perform them, anyway (as they've done with my typing ability over the years.)

Wishing to die in my sleep has not worked so far. As for suicide, I have never come up with a way to do it (lack of hand function really gets in the way of that, I think.) Even if I did have a method, I don't know if I could ever do it, because of how I was raised, and the effect it would have on my relatives. Plus, my family gets buried in an Orthodox Jewish cemetery (even though we are not Orthodox - we are barely Jewish), and suicide is a big no-no in Judaism, unless the person is insane when he or she does the act. Pains are driving me crazy, but I don't know if that qualifies.

[JamesMcM]

I am not ashamed of this condition, despite the fact that some aspects of it are indeed disgusting. I want to expire, primarily because of the blasted pains. Being dependent also plays a part. I feel so incompetent compared to the quads of my level here, because don't know any ADLs, and even if I did, the ever worsening upper back pains and shoulder blade problems would be reducing my ability to perform them, anyway (as they've done with my typing ability over the years.)

Wishing to die in my sleep has not worked so far. As for suicide, I have never come up with a way to do it (lack of hand function really gets in the way of that, I think.) Even if I did have a method, I don't know if I could ever do it, because of how I was raised, and the effect it would have on my relatives. Plus, my family gets buried in an Orthodox Jewish cemetery (even though we are not Orthodox - we are barely Jewish), and suicide is a big no-no in Judaism, unless the person is insane when he or she does the act. Pains are driving me crazy, but I don't know if that qualifies.

Dependency is a key reason you wish to die in your sleep, you realize it's truly disgusting aspects yet you're not ashamed of it? Interesting. So it must be the mass of limitations, annoyances that dependency causes the troubles you so much on the subject? I find the mundane patheticiness, helpless defensive and yes disgusting aspects to be very shameful and I feel like my condition symbolizes something along the lines of I'm willing to go to any extent no matter how undignified,no matter how burdensome on others etc. just to keep breathing; and I despise it, I despise myself but here I am still breathing lol. Nonetheless I wish you well man, truly I wish you find the peace you want living or not...


In no way am encouraging you, but yes hand and arm function greatly affect your ability to end your life obviously, it affects literally every aspect of human life suicide is no exception ( everything in this world was built by the hand for the hand, for chrissakes even the tools designed to help people without hand function nine times out of 10 require some kind of arm function to set up . However it's not impossible which is why so many people resort to starvation or something horrific like that. But of course that is something else entirely, and no human being should have to resort to such atrocious measures.

[alan]

Obviously, I am beyond unhappy to be paralyzed, but no, I'm not ashamed of it. I have no qualms about being in public in a power wheelchair with my curled fingers-they are what they are. I don't wear T-Shirts describing all the disgusting aspects of my injury. Naturally, I hate needing things like people pushing catheters up my penis, digging stool out of my butt, and all other disgusting aspects. Nothing is higher on the hate list than the pains, and the inability of anyone to tell me why they keep getting worse and are slowly spreading upward despite my MRIs remaining stable over the years. Without them, I think I would've had a much different life as a quad. I know I would never have been a super quad, as I didn't have the personality of that type of achiever before my injury. It apparently wasn't meant to be, whatever it would've been.

[Denied2016]

I haven't seen this movie but from reading here and online I know the basic story and how it ends. Tried to order it with my girlfriend about a week ago but the on-demand settings weren't working. My injury is still very, very new, but I do know what kind of damage it does to the body and what it can do to the mindset. It's impossible to lose so much and not be crushed. I'm guessing most people here lost about all they knew as normalcy. Adding in everything else that is now necessary on top, it becomes a very tough act to balance it.

My injury was at t5 and it was destroyed. ASIA A. Below my nipples has zero feeling or movement (spasms only). And this is bad. Worse than I ever knew (pre-injury) for what an SCI included and required. But it's not close to how bad it can be. Every step up the cord comes with more and more limits and/or complications. Yet this is only relative to the person living with it. Some do it much better than others. Just as with wanting euthanasia everyone has their own limit line. SCI crosses that for some, and others fight to stay alive with only so little they can move or feel.

Ive thought of death more than ever after this injury. By far. I feel hurt and saddened by my condition. Its new and embarrassing. It's frustrating. Sometimes humiliating. None of us ever pictured our lives turning like this. But a trip to Switzerland, or any other methods are just like our injuries. Once done, there is no turning back. No second chances. Most times it seems easier...and less painful than dealing with a fractured version of what I had. Sometimes it sounds like a fucking treat versus what this injury requires. But death is death. At least to me. One shot to see what happens on this planet. In this universe. And what if it all simply disappears and it's like all those billions of years before we were born that no one remembers? Like a light switch. Gone.

In a modern and humane society, the choice should be there, however. No one should be able to tell a suffering person what their threshold is. Sick or disabled, dying, in extreme pain, etc...IMO there should be the option. Option should come with a process (even a lengthy legislative process if necessary) tho. A walk in and die clinic is simply careless, obviously. But so is making the choice to prolong someone's suffering if they choose not to. I have no clue what my future holds, but having a plan for the worst, and knowing its there, legally, would make the inevitable pain more tolerable. If that makes sense? I dunno...maybe I should watch this movie instead?

[JamesMcM]

I haven't seen this movie but from reading here and online I know the basic story and how it ends. Tried to order it with my girlfriend about a week ago but the on-demand settings weren't working. My injury is still very, very new, but I do know what kind of damage it does to the body and what it can do to the mindset. It's impossible to lose so much and not be crushed. I'm guessing most people here lost about all they knew as normalcy. Adding in everything else that is now necessary on top, it becomes a very tough act to balance it.

My injury was at t5 and it was destroyed. ASIA A. Below my nipples has zero feeling or movement (spasms only). And this is bad. Worse than I ever knew (pre-injury) for what an SCI included and required. But it's not close to how bad it can be. Every step up the cord comes with more and more limits and/or complications. Yet this is only relative to the person living with it. Some do it much better than others. Just as with wanting euthanasia everyone has their own limit line. SCI crosses that for some, and others fight to stay alive with only so little they can move or feel.

Ive thought of death more than ever after this injury. By far. I feel hurt and saddened by my condition. Its new and embarrassing. It's frustrating. Sometimes humiliating. None of us ever pictured our lives turning like this. But a trip to Switzerland, or any other methods are just like our injuries. Once done, there is no turning back. No second chances. Most times it seems easier...and less painful than dealing with a fractured version of what I had. Sometimes it sounds like a fucking treat versus what this injury requires. But death is death. At least to me. One shot to see what happens on this planet. In this universe. And what if it all simply disappears and it's like all those billions of years before we were born that no one remembers? Like a light switch. Gone.

In a modern and humane society, the choice should be there, however. No one should be able to tell a suffering person what their threshold is. Sick or disabled, dying, in extreme pain, etc...IMO there should be the option. Option should come with a process (even a lengthy legislative process if necessary) tho. A walk in and die clinic is simply careless, obviously. But so is making the choice to prolong someone's suffering if they choose not to. I have no clue what my future holds, but having a plan for the worst, and knowing its there, legally, would make the inevitable pain more tolerable. If that makes sense? I dunno...maybe I should watch this movie instead?

Well said. To me I'm still perplexed as to why they keep anyone C-5 and up alive especially after a year or two when a proper asia diagnosis can be donewith 100% certainty since spinal shock is completely gone and they are still an Asia.

With what Alan said above, about the never being in achiever. I don't understand that mentality, the biggest problem I have is that my determination, my resilience is irrelevant now as I like the physical capability to implement it. I can achieve nothing myself, nobody with my injury or higher can people will deny that left right and centre and I understand why and who might argue with that. But the fact remains we can't even get ourselves out of bed in the morning soo...

Before my injury I went to the track in the morning, then I went to work at the gym when I was done training my clients or doing my shift on the desk I did my weight training, then roughly 4 hours later I went to boxing or mauy Thai. I ate the same thing every day for boiled eggs, big bowl of oatmeal with flaxseed, two ham or turkey sandwiches, and either meat pasta/ chicken stirfry/ two chicken breast and potatoes occasionally I would cheat with Subway or pita pit and of course weight gainers in between each meal. When I started working construction at the prison I'd work 12 hours shifts well everybody else was going home to have beer sit on their ass and bitch, while I made it to the gym for weights or to the club for boxing. From the age of 16 on words I moved out of my parents walked from my high school to the YMCA every day, could count on my fingers how many days a year I missed, I was far from a perfect student or perfect can add a few criminal charges but my dedication always got the charges dropped because people I barely knew would vouch for my livelihood . Anyways all of that is a relevant now when I have to ask someone put my shoes on, and if they don't feel like doing it or they don't show up well then nothing gets done; and eventually it gets tiresome arguing with people doing everything for you, that just makes me resent Myself a constant reminder for how hopeless and defenceless I am. I can't drag myself out of bed right now like, I can't throw myself in the hand cycle hit the pavement every morning , Clean myself up and then head to school or work 100% independently on my own accord, then head over to the gym work out or go out, clean up and go to bed if I even tried to do a fraction of that Id have to spend upwards of $6000 a month just on caregivers and at the end of day I wouldn't be doing anything myself 4000$ A month is what it takes for me to be able to have a sleeping and rising schedule some what to my own decision ( rather than getting up at nine and in bed by 10 PM every night at the age of 20 because that's when they send people) and having support enough to maintain my diet, and soon to be standing schedule, adding even one more task on a regular basis would be impossible I'm able to achieve what I have because family provide assistance for pay as well, I am lucky in that regard despite how much I hate it. I could be as motivated as I want to be but at the end of the day if I don't have the caregiving to leech on too and have them do everything I don't even get out of bed nothing to be done about that no amount of resilience changes that.

And I have to live with the fact that even after roughly $50,000 of daily physiotherapy I didn't recover even the slightest function to be more independent, not even the ability to pronate my right arm and stabilize the right shoulder properly. I wanted to keep going five days a week for longer and who knows it might've made a difference, in fact I wanted to go for six days a week three hours a day a lot of money but I was willing to take the risk but the family, friends, and caregivers the game the problem five days turn to four days, bitching continued until it was only two days a week by the time I could only arrange getting there three times a week I had lost all motivation, I couldn't exercise myself efficiently on the off days so there is no chance of neuro plasticity given the severity of my injury and the fact they waited over 24 hours to perform surgery in order to elicit recovery I needed very intensive daily functional exercise. Again my work ethic, my determination my resilience was a irrelevant I was lucky I I could get my insurance to pay out daily physiotherapy, they wouldn't hey out the necessary funds for caregiving necessary to keep it up, once I could mooch off family and friends because they no longer we're willing became too expensive. And then the secondary complications spiralled out of control, bad not modern medicine completely unable to really do much for various secondary problems, a few things they can do involve very damaging and extremely invasive procedures, that ruin your chances of recovery and eligibility in future trials sooo here i sit.

I was unable to recover anything of substance, now I'm supposed to accept a life of full dependency, go get an education and consider it my own accomplishment when I didn't even get myself out of bed, more than likely had scribes and people helping to manage my other complications in between Class. Get a completely boring mundane quad friendly job that requires no hands on work ( not designed for that kind of work), and at best I can get married and have kids courtesy of a fertility lab after they extract my seed and implant it for me. Except even as an able-bodied I never wanted to go down the generic path that society paved out ( which as a high complete quad is The best case scenario, and you're supposed to pat yourself on the back double time for achieving the usual because you're disabled ) that 90% of humanity follows. I want to go to war in the street, in the ring on a battlefield, work my way through the ranks in the army or MMA preferably both, but if I could not achieve something exceptional like my dream being a weapon, then at the very least I'd like to do something hands-on using my body every day, maybe start my own business where at first I'd have to be my own primary labourer until it gets Little bigger with employees and I'm too old, having said that every man I know still works with his hands till he dies of a heart attack ( The ones that retired live a completely miserable life where they cling to cutting their lawn, and making a trip to Florida or a all inclusive resort somewhere down south is The big annual deal; I don't know why anyone wants to live past 60). Literally fuck computers, paper pushing/ desk work, customer service etc. that kind of shit isn't worth $1 million a year would make me suicidal on its own. Fuck money ( this injury and the helpless caregiving dependent lifestyle is what has made me even remotely covet money) I wanted to test myself, see if I have real resilience real strength the kind of stuff that so few have let alone even know about, really can only be found in life and death scenarios when every instinct is telling you to run, curl up cry etc. and most do. If I failed and was just an average and had to go to fallback plans I'd rather Farm, work on engines etc. for a modest living, keep myself healthy and independent till the day I die participate in amateur powerlifting, boxing matches etc. Yeah the body is literally everything Brain is nothing without it and vice versa in my eyes, The case of body most importantly your hands and arms!

and I firmly believe the technology is here to get it back, they've all just gone at it the wrong way; most fucking clinical trials don't even have a rigourous functionally stimulating exercise program after the treatment, at best they go to a gym for an hour a couple times a week and then go back to their wheelchair/caregiving dependency lifestyle for 98% of the day, it's not enough not enough to wake up a literally dead body, cells, stimulator they need incentive to repair all scientists agree on that. And after an injury our body gets complacent in a dead state and basically atrophies into hibernation even in many decades there will not be a treatment for chronic spinal cord injury that won't require at least a year of very intensive functional daily stimulating exercises/movements especially as a quad when you don't just have to worry about lower body and BBS function. I digress...

[Denied2016]

I remember being told by a few nurses in the second hospital how walking was possible. How they had friends or family that were "paralyzed" and all were back to walking as of now. It did provide some hope for the month I was in there. But now I wish I knew earlier what was really going on. That didn't come until rehab. 2nd day I got the ASIA test and was told no one had ever walked after this type of an injury. Up until then I thought "rehabilitation" was rehab for trying to regain what was lost in the injury. I guess I was undereducated and optimistic...and had uniformed doctors during the trauma section.

Seeing the atrophy also was very unsettling. Full muscles gone in just a month. Think I dropped 40 pounds in the same amount of time. I wasn't in the gym at all before the accident. But owned a construction business and lifted weights at home. No where near those numbers but was still proud enough of my body. Having 2/3 of it gone has barely even sunk in yet. I get mad as hell when my legs spasm out. Frightening. Takes about 30 seconds to realize when I wake up that it's really true and I'm paralyzed...And it's 7 months later. Can't even speculate on not having my arms. I can only feel for you. Not that my injury isn't awful, but it could always be worse. Sucks that all your work at PT didn't return anything. My inpatient rehab was basically 3 weeks. They shipped me out after basics like transferring to a car (with a board). Still needed supervision for a lot of things but was discharged. Had some therapy at home but very little help also.

Now it's true that I either adapt to this mentally or suffer along. Havent really adapted to much yet, except getting in and out of my chair. None of it is easy. Everything is more difficult. From intermittent sleep and getting dressed to the worst, bowel bladder or never feeling my penis again. This has to be the hardest for myself, and knowing there's no chance of return. Permanent... Its very difficult to even realize what "permanent" truly means. Im still trying to get my brain around it. Sure there is no going back for any of us. Were here for good...And it can take many years to even adjust to this or rearrange your brain to acquiesce. I'm rambling...but I miss being happy and content. I truly don't blame anyone for their thoughts or reactions to this injury. Hits everyone differently. The plot in this movie doesn't upset me. We've all lost what our lives were and never will be again. And with no cure its also easy to become even more upset. The main character wants out? In many ways I don't blame him at all. I fight through it with what i can...But this injury has taken me to the depths plenty of times. And I'm just getting started. Wish everyone the best