Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Is life worth living with this?

Discussion in 'General ME/CFS News' started by Crappy, Dec 18, 2010.

  1. Crappy

    Crappy Senior Member

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    Dying with Dignity

    roma started a thread here,

    http://forums.aboutmecfs.org/showth...-worth-living-with-this/page3&highlight=worth

    I became so involved in it I didn't think it was right to take over her thread. These are some of my thoughts about the controversy over Dying with Dignity.

    You may feel alone, but you have a lot of company in your suffering. Our dilemma is highly relevant to the human condition right now. Society treats the issue of Death with denial, or they want the power of control over Death; which isn’t healthy or helpful for anyone. It seems most people today are OK with taking others lives, or neglecting others to Death, but have an irrational fear of losing their own life. Death came for Mother Theresa and Hitler alike. It is coming for everyone reading this, and everyone who had a hand in creating the plastic and wire, for producing electricity, and computer hardware and software to allow us to communicate like this. To overstate the obvious, Death will come for you and me, whether we like it, or are ready for it; or not.

    I think medicine in the U.S. has recently regressed. The help, people with chronic illness have recently received, was more compassionate, but lately the issue has again become an active battleground for the righteous. (These people take any step to control your freedom of will, but can’t be bothered to lift a finger to help make life more bearable for you. Religious Zealots, I wish they really were interested in helping, rather than controlling.) With the deaths of Michael Jackson, Nichole Smith, Heath Ledger, etc… care in America has become less compassionate. Doctors in the U. S. are withholding symptom treatment, which is increasing suffering and forcing a lot of us to reexamine whether living has become too difficult in light of our re-acquired symptoms. Since there is no current diagnostic test or treatment for this condition. Until recent history all mankind that suffered from an infection died a miserable death from that infection. No one knew what caused infections, and most of the time symptom treatments weren’t available either. Unluckily, collectively, tests and treatments are still unknown for our patient set, and ridiculously, symptom treatment is being withheld. The message from society is completely confounding for us living on this edge.

    I think we all make the “whether to live” choice daily, consciously or unconsciously.

    It is like making a list of the Pros or Cons of living, or can be compared to a Balance or the See Saws that were on all the children’s playgrounds of yesteryear. Pretty much most of the days of life, a person wakes up and the choice to go on living seems so beneficial that there really isn’t any internal debate about the subject. You feel good, you have your health, life’s’ challenges don’t feel overwhelming. You are off to the races.

    The days you get up and the answer to the question, “is life worth living?” is “I’m not sure”. That is when society and the Taboo of the subject of Death, fails us. The current dogma dictates, “You must be crazy to ask the question”. We are all conditioned to fight for our lives; and regarded as dangerous or insane if we don’t follow that dogma, “life is always worthwhile” no matter what. (Lets face it; those who didn’t have the will to live, aren’t around to comment, so how can you know another perspective.) Thanks to my illness I have pondered this subject a lot, as it appears other do.

    We seem to simplify the "will to live" as one issue, while it is really two different issues:
    1. Desire to live.
    2. Fear of Death.
    I think we would all agree, a strong Ghusto for life, is not the same as fearing death.

    Fear of Death seems to be two different things too:
    1. Fear of the suffering that occurs approaching Death
    2. Fear of the unknown (what happens to us with Death? do we go on? is that it? Heaven? Hell?).

    I don’t fear the unknown any more, what I fear now is continuing to live like this. This really is my greatest fear, being incapable and ill everyday is like living my nightmare over and over again.

    I think the HBO Special “You Don’t Know Jack” about famed Dr. Jack Kevorkian helps illuminate this issue, but dogma is actively obsessively oppressing the issue. If you struggle with these issues, this DVD may provide a little insight for you.

    While Dr. Meirleir and Dr. Cheney are relevant to those who want to live and believe they still have a chance to beat this illness. Dr. Kevorkian is relevant to those who feel they will be dead from a long miserable illness, before Medicine has a solution. No doctor is trained to help a patient end life with a little dignity. Anyone in society who fights to save lives is regarded as a hero, whether they are policemen, firemen, or doctors. I think a distinction needs to be drawn here between people who want to live, and those who need to be released from a horrific existence. (A doctor who revives someone suffering from an untreatable illness is no hero!) I believe this blanket assumption is a disservice for those who need to be freed from their physical hell. Much more needs to be said and done about Dying with Dignity.

    A doctor enforcing society’s will on you; is not humane.

    It is strange, we have laws dictating help for those in need, even executions for murderers today, are carried out with efforts not to cause the killer to suffer. Also, if you don’t properly care for a pet, the animal police will punish you. When it comes to a suffering pet from an untreatable condition, most people would agree to euthanize the poor animal, and I could point out more inconsistencies.

    The longer I live, the more psychotic humanity seems.

    When it comes to a fellow humans’ compassionate care; most people loose the capacity for rational thought and start babbling like mindless drones. They begin regurgitating some dogma that was forced on them, whether it is relevant or not. Indeed, the people who protested Dr. Kevorkian were completely fearful he was some kind of Vampire who was going to come in the dark of night and drain the life right out of them. Dying with Dignity is not about killing! It is not about taking anyone’s’ life from them, it is simply a person acknowledging they have:
    1. lost the desire to live; also,
    2. they no longer fear death, and
    3. life is too miserable to continue, a giving up if you will.

    The first issue in dealing with this subject rationally is the requirement to admit to oneself they are Mortal. In all my life I have never met, heard of, or seen reported in any news, anyone living, who successfully avoided Death. We die whether or not we want to, the question is how? on your feet, or on your knees? is a saying people in my part of the world are fond of. The issue of Dying with Dignity is really about control:
    1. Are You going to control how and when?
    2. Are You going to leave it to fate, or greater power?
    3. Are You going to leave it to others (gov., Drs.) to decide?
    Societies have the control, unless you take it back. It seems everyone wants that power, or to take that power from you. Humanity seems to accept neglect, murder, and mass homicide well, however, society dictates Death should be feared at all times. We put people on suicide watch so we can kill them later as punishment. To me, this is the behavior of a psychosis.

    A psychiatrist once told me,”Suicide is a permanent solution, to a temporary problem”.

    This remark really helped me clarify the act, and issues. You obviously should not consider suicide light heartedly. I think, as best you can, you should remove all emotionalism and be brutally honest with yourself (if you can’t achieve this, don’t do anything). Many people commit suicide in an irrational state, which probably gives rise to the attitude, “you must be crazy to do it”. A lot of people think they are going to get back at someone by killing themselves, an obvious immature attitude, don’t be that stupid. Others do it out of depression, death is a solution, but you can’t undo it. Your depression better be permanent, untreatable and severe, otherwise you make a serious mistake. Life can be a wonderful thing. You are the only one dealing with the difficulties in your life, and the only one dealing with the failures of your body. Life can be disheartening; it seems shortly after you are born someone is always trying to get something from you. Add to that, the cost of existence, especially those of us with chronic illness. The average person with this illness will not have any assets left to pass on to others.

    I think the Hemlock Society, Dr. Kevorkian and other organizations have the right attitude, they don’t want anything from you, they just try to help people find relief. Their cause is not flashy; it doesn’t need a marketing campaign. It is merely an avenue that should be there in an advanced society for people suffering and have no known chance of healing. This makes the circumstances of us CFS/ME sufferers even more muddled. For the longest time we haven’t been given access to compassionate care. Even now it is hard to find; if you can afford it. Most doctors still want to believe this illness only in the patients head, not their own lack of understanding.

    Is your life worth living? This is obviously a highly subjective value, only the person living in your skin can assess. The issues seem to be endlessly confounded by the sheer volume of challenges handed to us in life. Many challenges and tribulations in life make us who we are. Without a challenge, we wouldn’t grow. I don’t advocate the view that, “if life gives you lemons, hand the life back, take it for a refund, or exchange it”. First, I would take the emotional motivations out of negative answer. Try and look at it as bluntly as you can. Luckily for most of us, life is lived with one side of the Scale or See Saw heavily weighted. As you begin to feel differently the See Saw is balancing on the fulcrum (pivot point) and that is where society fails us, because of the unrealistic fear of death. Mother Nature shows very plainly, we all are born from the womb and we all get to experience death; she can’t be any clearer than she is. Mother Nature does not mix words, she just puts the cold hard facts in your face. Emotionalism seriously clouds our judgment. The choice is only yours for a narrow window in time:
    1. You didn’t choose to be born.
    2. You don’t contemplate death when things are OK.
    3. You question the value of life, when the value is low in your own judgment.
    4. Life is taken back from most without their choice either.

    You don't have to make a choice, if you do nothing, Mother Nature at some point will chose for you.

    Realistically, we all have absolute power over our life, I have no desire to influence anyone, one way or the other. I do think society interferes in areas of our lives that it is not needed or wanted. If society really wants to be of service it this issue, it should foster open communication.
     
  2. free at last

    free at last Senior Member

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    Some great insights here,about a subject a lot would rather not thnk about. The fear aspect is certainly the most powerful. What i feared most at my worst, was living a deliriouse fluey existence untill death. Though the good days did come. Though i feared death too.Still do.

    But i prefer to think nature that controls everything, is a balance that just has to be,both good and bad,elation and terror, beauty and uglyness. in the long term,maybe its a irational fear based on the illusion of self imortality ? and the uknown.

    Better to have breathed a second of beauty and love,than a eternity of nothingness. Life is special maybe death is too,i hope.
    Interesting thread. love your name. a second of beauty http://www.youtube.com/watch?v=SOZteejJI3E&feature=related
     
  3. Crappy

    Crappy Senior Member

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    Thanks for the post and the tone of the post. I hesitated to post this, or leave it up. I expected to have a wrath set upon me. It really needs to be talked about. There are books and movies on the subject, but individuals are the ones having to deal with it, there needs to be dialogue; as strange as it feels.

    I don’t remember the movie it was in, but it was a scene of someone struggling at the end of life, and the dialogue was something about an individual fighting for their life, and whoever was present asked’ “who are you fighting for your life? No one is trying to take it”.

    We have a misperception, I believe, some other being is trying to take our life, for most people untrue. Life is simply the jostling of living organisms to obtain the resources needed for their own survival. Like a lion killing a gazelle, or vultures eating road kill. When our body’s fail to obtain adequate resources, or mismanage the resources it has, we die. Our bodies are a picture of perfection when working well. A sublime symphony of managing available resources, without requiring one conscious thought. First and foremost I think the stigma that dying is somehow a failure, needs to be crushed. It is not a failure, or a sign of weakness; all living creatures’ cells stop working right at some point! We have no idea how life comes, or how it leaves.

    We now know we are not a sole living creature. In fact, we are an entire colony of living cells, living and working in harmony, with only approximately ten percent of the living cells in us, belonging to us. When we die, an entire micro ecosystem dies. We need to lose the fear and the stigma. We tend to embrace the occurrence of life, and loath the end of it. Why, just because we don’t know where the life went???? :yinyang:

    Thanks for the video, I always liked Bad Co..
    I'm not a HipHop fan, but here is a video that made Time's list of Top Ten for 2010, on the subject of life, and the miracle of life. (Warning: Profanity)
    http://www.youtube.com/watch?v=_-agl0pOQfs
     
  4. helen41

    helen41 Senior Member

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    Sleepy Hollow Canada
    Crappy,(I hate calling you that!) this was a brave thread to start. These are such difficult issues. I worked for years in psychiatry, have done the suicide watch, and have dragged suicidal people into the hospital when they gave me reason to think they might kill themselves. I probably have a hundred thank-you cards in my drawer from those very people, saying that their lives have changed and that was a turning point for them. Those were people who were making 'a permanent solution to a temporary problem'.

    I also have had discussions with people about their ultimate right to make the decision about life and death. I believe we all have that right. What I believe is that people need to make that ultimate decision during a good time, never a bad. Sometimes the moment, the day, or the week can feel unbearable. It feels hopeless, but then something shifts and there's a sunrise or an interaction that changes things. Sometimes it doesn't change, and there's no reasonable expectation it will.
    My worry is always that people will make the decision as a result of desperation, rather than as a measured choice. Determining the difference can be very tough.
     
  5. Crappy

    Crappy Senior Member

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    helen41

    Is the issue discussed more openly in your culture?

    I am continually impressed by the caliber of people I encounter here. I am also thankful for mature input, and input from someone who served in a field who had a lot of exposure to this issue. I haven’t been in a position to experience that first hand.

    I found your last line particularly profound, and well stated.

    You can call me anything you like, Sneezy, Dopey, whatever you like. Where I live the saying is, “you can call me anything you want, just don’t call me late for supper”.:Retro smile:

    :thumbsup:
     
  6. Mark

    Mark Former CEO

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    I just wanted to say how brave and thoughtful I found your post, Crappy (I feel rather uncomfortable calling you that too!). Really good thoughts and analysis in all the posts on this thread, IMO.

    It's an incredibly difficult moral issue to wrestle with but I personally agree with the line taken by people here: that suicide is not a decision to be taken during a bad time, or in a time of crisis, and that people in that situation do need some help and protection from themselves, but that at the same time, ultimately, it's my life, and I should have the right in the end to determine what to do with it. I've long felt that the concept that suicide is a crime is almost the ultimate insult, the ultimate expression of slavery to the system: it's as if even my own life does not belong to me!

    I think it's OK to say that your views and mine aren't universally held by the PR team; we've had some discussions about this in the past year and there are differing views. It's ever such a hard and controversial topic to tackle, but one we sadly can't afford to ignore within our community. Somebody suggested on one of these threads that we should think about how to provide some sort of support structure within PR for this, and that gave me the idea that, more widely, a subgroup on depression might also be a good idea. A fair proportion of us suffer from, or have suffered from, depression, of course...though in a way the suprising thing is how small the incidence of depression is in ME/CFS.

    I'm still not sure what the best way is for PR to address this issue, but it will be on my agenda to raise with the board later this year. If anybody has any ideas about this, or wants to get involved in setting up and running such a group, do let me know. My own time is extremely limited I'm afraid, but I'll do what I can to support the efforts of others in this area.
     

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