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Disability and Suicide

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I’m 26 years old and afflicted with a freak case of arthritis which has almost totally destroyed my life. As of now, the disease is still in its relatively early stages, and is not yet terribly painful or debilitating, but it is steadily worsening and the prognosis is grim. I expect a steep decline into morbidity from here; my condition will continue deteriorating and I will eventually become severely disabled and live in permanent, intractable pain. I’m facing a level of functional impairment that will eventually make it impossible to have anything resembling a normal life and may very well make it impossible even to survive. My lifespan will be reduced by decades as a result of enforced inactivity. Of course, I don’t know long it will take, but if it gets as much worse over the next three years as it has gotten over the last three, I will be a very unhappy motherfucker in 2012. I shudder to think about where I will be in 10-15 years.

The disease did not emerge out of the blue. Instead, it was caused by my own actions, in conjunction with some bad medical advice I received from an incompetent podiatrist, in a heartbreaking series of events that occurred in 2006. I’m not going to go into the details, but I’ll say that I didn’t do anything that was blatantly abusive. It seemed like the correct course of action to take based upon the bad information that I had at the time. There was no way I could have known that this would happen. Nevertheless, the awareness of how it happened, and that it was totally needless and avoidable, is a major source of psychological anguish. I can’t accept what happened because it’s unacceptable.

I have lived on the brink of suicide for the three years that have elapsed in the wake of the catastrophe. Although I’ve adjusted to my condition somewhat, and gotten used to it, I have still not been able to accept the terms of my continued existence. There are deep contextual and psychological details relating to how this affects me, and an exhaustive post would be required to explain them, but suffice to say that this particular disease is utterly incompatible with my personality and is probably the single worst thing that could have happened to me as an individual. It is the perfect antithesis of my values and represents the exact opposite of what I want in life. It’s my own personal hell.

I carry on my day-to-day existence but am profoundly unhappy. I no longer have any purpose other than to keep my morality intact. I try to keep going, but the progressive worsening of my condition, the economic clusterfuck, and the behavior of my shit family are destroying my morale. I’ll never be able to do the things I want, never be able to have the careers I want, never be able to become wealthy. Arthritis appears to be a permanent barrier to happiness; the world I want cannot be won. I fantasize constantly about what I would do if I was healthy, but when I try to apply the same energy to thinking about the things that I can still do, I come up blank, just get disgusted and depressed. The situation is just pure shit.

If I want to continue to live, I have to resign to tolerate circumstances which I find fundamentally unacceptable, which leaves me with the options of either living in misery or not living at all. Right now I have no idea what’s going to happen, but I feel like I’m losing the battle to stay alive. I don’t want to die, for fuck's sake... death fucking blows. But my reality is so bad- not just the physical illness, but the awareness of how this happened, and that it didn’t have to be like this- I have a hard time choosing between life and death.

I guess my reason for posting this is that I’m hoping someone will have something useful or encouraging to offer. Anything honest and objective would be appreciated.

Edited by cliveandrews
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I’ll never be able to do the things I want, never be able to have the careers I want, never be able to become wealthy. Arthritis appears to be a permanent barrier to happiness; the world I want cannot be won. I fantasize constantly about what I would do if I was healthy, but when I try to apply the same energy to thinking about the things that I can still do, I come up blank, just get disgusted and depressed.

What are the careers you want? What are the things you want to do? Maybe you'll just need to explore others options in those fields. Maybe explore interests you once had before you were even a teenager. I was pretty into ancient history when I was younger, but my other abilities/knowledge gave me interest in other fields. It's hard to give much advice when I don't know what it is that you like.

My own medical condition is probably a lot worse than yours. I certainly can relate to everything you said. There are still plenty of things I can do that I care about. Sometimes being able to do what you want is simply about figuring out a different way of doing things than the perfectly functional person.

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I'm so sorry to hear of your situation, Clive. It's a terrible thing to hear someone so young afflicted with such a disease.

There is no easy way to answer this, from how I see it. If life for you is devoid of any attainable values, then I think it is moral to end it on your terms. However, as debilitating as this affliction may be, I cannot imagine it takes away all your values? You're very young, and even though in very unfortunate circumstances, you've still got a lot of life to live and a lot of new situations to find yourself in.

All the best, Clive.

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I’m 26 years old and afflicted with a freak case of arthritis which has almost totally destroyed my life.

If this is an autoimmune disorder, check out http://www.epidyme.com/. The "core technology" used by Epidyme is enzyme potentiated desensitization, which worked for me to cure my allergies.

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What are the careers you want? What are the things you want to do? Maybe you'll just need to explore others options in those fields. Maybe explore interests you once had before you were even a teenager. I was pretty into ancient history when I was younger, but my other abilities/knowledge gave me interest in other fields. It's hard to give much advice when I don't know what it is that you like.

My own medical condition is probably a lot worse than yours. I certainly can relate to everything you said. There are still plenty of things I can do that I care about. Sometimes being able to do what you want is simply about figuring out a different way of doing things than the perfectly functional person.

Wanted to be either a doctor or an exercise physiologist.

There are other careers that I would also like, but they all require me to go back to school, which is not realistic.

The joints in my hands are deteriorating and it will eventually becom impossible for me to write or type.

Edited by cliveandrews
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The only thing you can do is to list what you're capable of achieving, find something on that list that can be a value, and work to achieve it. It may be something you had no interest in intially, or you never considered before. But if it isn't objectionable and you work to master it and be productive, you can lead as happy a life as is possible for you.

As for the pain in your future, all you can do is be ready for it, treat it as best as you can, and continue finding value in the life you have.

I'm sorry this happened to you, but you have to give up thinking about what your life could have been, and start focusing on what you can do, now. Otherwise, you might as well be dead already.

You also shouldn't blame yourself for this freak accident. We all work from limited knowledge -- nobody is omniscient. Even if you think it's partly your fault, you have to forgive youself and move on, as hard as that might be. If it isn't too personal, I'd be interested in hearing the details of what happened.

Good luck on the difficult road ahead. There are still values to find and achieve in life, despite your affliction -- but first, you have to commit yourself to living it.

Edited by Myself
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If you will be unable to type, you might look into speech input programs now. There are programs which claim to recognize speech and translate it into computer text. It may not be enough for you to be a doctor, but it could help avoid isolation and might provide a means of income.

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I don't really know what to say, but I'm so sorry that you're going through that. Some of the above suggestions sound good to me.

I wonder if there is some sort of support group for people with long-term or terminal illnesses that may be of help? Perhaps finding others with similar problems would allow you to explore different ideas, career paths, lifestyle changes/choices that may make your life easier/better?

I wonder if there are counselors or life coaches specifically for people like you? I'm just sure that others are and have been in your position, so it would be nice to find out how they deal with it and what careers they are able to have.

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There are other careers that I would also like, but they all require me to go back to school, which is not realistic.

Well, you'll have to think about what aspects of those careers you can do, or what you value about those fields. I don't see why you can't be a doctor still (unless of course that is what would require you to go to school). Some of your abilities may be gone or deteriorate to become useless, but you won't lose all your abilities. You'll still have your ability to think. It is clear that you need to re-evaluate your status in life, but you must devote time to thinking about what it is you think is worth devoting your time to do.

Maybe to help get your thinking going, write down all the things that you value. Even if it seems silly, write it down. Think about how those things can relate to each other. If one of those things requires action, start taking action at the most basic level, even if it seems fruitless. Don't worry too much about what you can't do or will be unable to do in the future. Adaptive devices will be invented, medicines will be discovered. Maybe invent those devices yourself and sell them to others.

Just take some time to just think. I'd be willing to help you, my own disability puts me into a similar situation, even though the causes are completely different.

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I'm sorry this happened to you, but you have to give up thinking about what your life could have been, and start focusing on what you can do, now. Otherwise, you might as well be dead already.

This. I know a lot of people, myself included, who obsess over "what might have been" instead of doing something useful *now*. This is the most retarded, self-destructive, useless behavior pattern imaginable. No wonder you're depressed.

The only cure for it that I've ever found is to do something, even if it's not an ideal something. It'll get you moving in a positive direction and snap you out of your ugly mental spiral. It doesn't matter if you don't really want to do it. It doesn't matter if it feels futile. Just DO IT.

Is this HGH-related arthritis?

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Human Growth Hormone is known for causing the hands, feet, and jaw to grow out of proportion with the rest of the body, which triggers progressive degenerative arthritis in some people. I was thinking steroids, but those are regularly used to *treat* arthritis.

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That's really bad news.

How is the science in this field? How close to a cure are they? Since you are interested in medicine already, maybe this is what you should study. I think that's what I'd do, pour all of my time and energy into figuring this out, and finding a cure, or a way to reduce the problem.

I'm throwing this out there, since I don't know how practical this is, but I do know that the medical field is heavily controlled by government, so advances are much harder to come by than they would otherwise be. Also, keep in mind that the science of medicine is usually way ahead of the practice of medicine, due to government bureaucracy.

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That's really bad news.

How is the science in this field? How close to a cure are they? Since you are interested in medicine already, maybe this is what you should study. I think that's what I'd do, pour all of my time and energy into figuring this out, and finding a cure, or a way to reduce the problem.

I'm throwing this out there, since I don't know how practical this is, but I do know that the medical field is heavily controlled by government, so advances are much harder to come by than they would otherwise be. Also, keep in mind that the science of medicine is usually way ahead of the practice of medicine, due to government bureaucracy.

They're about as close to a cure as Obama is to laissez-faire capitalism.

In general, medicine does't cure diseases, it manages/palliates them.

The government-abusing pharmaceutical cartel has suppressed the emergence of bioengineering and regenerative medicine.

Edited by cliveandrews
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In general, medicine does't cure diseases, it manages/palliates them.

Bah. There have been a number of wildly successful cures for diseases. When was the last time you saw someone with smallpox?

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They're about as close to a cure as Obama is to laissez-faire capitalism.

In general, medicine does't cure diseases, it manages/palliates them.

The government-abusing pharmaceutical cartel has suppressed the emergence of bioengineering and regenerative medicine.

Don't get so negative so fast about this. My main point is you need to look at medical research, if current medical practice isn't doing the trick. Doctors usually don't give advice that is outside of the mainstream of practice –- which is heavily controlled by government -- but it may be that is where you have to look.

A few years ago I read a book on fasting by Doctor Joel Fuhrman. It's titled "Fasting and Eating for Health".

Link: http://www.amazon.com/s/ref=nb_ss_gw_1_17?...sting+and+eatin

Dr. Furhman's website:

http://www.drfuhrman.com/

In that book he makes claims that this can help against arthritis, among other things. I’m not sure if it’s the kind of arthritis you have, but I want to alert you to it just in case.

I recommend this book for two reasons: 1> Arthur Robinson, a research scientist who I have a great deal of respect for, recommended it. His field of research is human longevity and health. 2> I want to give you a heads up that there are lots of things going on out there that you won't know about unless you look.

There are videos of Fuhrman on youtube, if you want to check it out that way initially.

Arthur Robinson's webside http://oism.org/ Oism doesn't stand for Objectivism (he's not an Objectivist), but for the Oregon Institute of Science and Medicine.

And Megan is right as well, there have been cures for many things.

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Here is an excerpt from an article by Dr. Robinson that he wrote in Access To Energy, his news letter publication, last year.

The subject is cancer, but the point is a general one about science and medicine today in America.

...

The reported Sloan-Kettering work is almost certainly just a repeat of our finding that the human equivalent of 3 grams of vitamin C per day increases the growth rate of cancer. They used a 2 gram human equivalent and found that the cancer grew faster than expected during their chemotherapy.

We published this result 14 years ago. In physical science, discoveries are not ordinarily forgotten for 14 years and then rediscovered. The Journal in which we published was Mechanisms of Ageing and Development -- an old and very respected publication. Better, however, would have been the Proceedings of the National Academy of Sciences, PNAS. Our paper was actually reviewed and submitted to PNAS by Martin Kamen, R.B. Merrifiled, and B. Strehler. By ordinary rules, that submission and recommendation should have meant automatic publication.

PNAS has, however, a special procedure in which any paper with potential medical implications must also pass a designated board of MDs. The MDs rejected the paper -- nutrition and cancer not being a mainstream part of current ordinary medicine.

Our publication reported that the rate of growth of squamous cell carcinoma in mice can be varied by over a 20-fold range by means of diet alone! Ho-hum. Medicine might become interested if the same thing is rediscovered several times over a period of 50 years.

In an age of ascendency of science and engineering, fields of specialization that depend upon this progress can advance very rapidly -- but only if the people in these fields accept this advance. It is not this way in medicine. This is the reason I write medical "science" -- with quotation marks. Sometimes it is a science and sometimes it isn't. When it isn't, unnecessary human suffering and death result.

From the March 2008 issue of Access to Energy.

I'm bolstering the point about the research and science versus what is current practice in medicine. I'll bet there is a ton of research out there worth looking into.

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Lots of people live with diseases, physical disability and weakness and constant pain, including myself for the past 23 years. What you need to focus on are positives in your life right now, and then how you can affect your future for the better. Plan for and deal with the bad times as they come. As long as your brain is healthy and functioning, you're good to go as long as you don't let yourself get bogged down in the bad shit. Even when you're sick, you still have to choose to life or die, and you know what to do when choosing life. Contemplating suicide right now, as bad as things seem, is entirely the opposite of choosing life.

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Bah. There have been a number of wildly successful cures for diseases. When was the last time you saw someone with smallpox?

Well, I said "in general." Infectious diseases being a major exception.

There has never been a cure for any major chronic illness that I am aware of, apart from a some kinds of cancers.

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  • 1 year later...
I guess my reason for posting this is that I’m hoping someone will have something useful or encouraging to offer. Anything honest and objective would be appreciated.

I've been very fortunate to not suffer from anything as difficult as you describe, so I do not in any way speak from meaningful experience, but I suspect that were I to become inflicted by some disease that would inevitably end or ruin my life that I would devote the productive time that I had left to becoming an expert on it.

My rough approach would be to read everything that has been tried in the way of reductions and cures, read all of the literature of any research that has been done or is being done and set about acquiring any background knowledge which I lacked and found to be necessary to further understanding of the particular disease. Then I would try to engage professional researches in the field and even, if possible, offer my assistance in any way that I could. Donating time as a lab tech, filing papers, whatever.

The only similar experience that I can draw from is that in my teens I had a back injury at work which was incapacitating for weeks at a time. Over the course of several years I finally learned how to manage and eventually eliminate it by getting a pretty good idea of what precisely was wrong with me, physiologically. Doctors and chiropractors I found to be of no help at all in regards to it.

Again, I don't mean to compare it to your illness but thought that it might be useful as a potential plan. I really, really like living my life and I would view any threat to it as primary concern. And to be clear, I would do this even if it seemed an unreasonably low chance of success.

It's not significantly different than if someone was trying to stab you. In your shoes I would focus all of my energy on not getting stabbed. If that worked out then I might think about my future.

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  • 2 months later...

First, take the Doctor's prognosis with a grain of salt. It is a generalization over the whole bell-curve of the population of patients, and you know something about where in that bell-curve you fall in terms of general health, strength, determination, resourcefulness, etc.

I would research each aspect of what brought this on, since it seems to have a special induction, and research arthritis, the mechanism, the metabolism, how drugs that treat it work, how physical therapy works, ancient remedies, foreign remedies, acupuncture, etc. Then, paint yourself the most optimistic picture that isn't pie-in-the-sky. Then set out to prove everybody wrong. Think of Beethoven composing though deaf. Think of that astonishing woman who was born, a Thalidimide baby, without arms, who cared for her home, had a baby and raised it, typed and embroidered with her toes, etc. (Anybody see the TV program about her?) She drove, shopped, did everything but play tennis. And, she had to suffer such appalling affronts as some woman in her grocery store who objected that she picked up produce with her foot!

That said, I don't want to claim that I would have the strength. I hope I would. I pray I never have to find out. Don't give up in fear of what might come.

Mindy

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Seriously?

No Meditational experience required? I've tried meditation on several occasions and I know some people who are quite adept at it and I can say from personal experience and from talking to them there is definitely a whole lot of work that has to go into any proper meditation (which is really nothing more than thinking really hard).

Don't get me wrong. I do not think that meditation is useless, one good friend of mine has used it to help him cope with PTSD and he is a better person for the work he's put into his meditation/thinking.

Also there is no such thing as an "altered state of consciousness". You are either conscious or not. You might think of something after "meditating" (thinking really hard) that you haven't thought of in that way before but there is nothing magical or even spiritual about the act in and of itself.

Having said that I admire your determination and tenacity.

Cheers.

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