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ME/CFS and Beating the Clock
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Suffering and spirituality

Discussion in 'Spirituality and ME/CFS' started by Nielk, Aug 17, 2011.

  1. Timaca

    Timaca Senior Member

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    Hi Nielk~ I make more profit if the book is ordered through my website (which gives a direct link to Dog Ear, the publishing company). If people order through Amazon and Barnes and Noble.com, then those companies, of course, take a cut, so I make less and thus donate less. However, some people get free shipping from Amazon and Barnes and Noble so there is incentive to purchase through those companies to avoid shipping costs.

    Bottom line is I'm happy you are interested in purchasing my book. Buy it from whomever you wish, please give me feedback so I can make it better in the next revision and spread the word so others can be helped by it and more funds can be raised for CFS/ME!

    Best, Timaca
  2. Nielk

    Nielk

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    Hi Timaca,

    I do get free shipping from amazon . I'm going to order it today. I will give you my feedback (for what it's worth) when I'm done reading it.
    Thanks,
    Nielk
  3. Timaca

    Timaca Senior Member

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    Thank you Nielk. I look forward to your feedback on my book. And thanks for starting this thread. I have enjoyed it.

    Timaca
  4. Ember

    Ember Senior Member

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    One of the things I love about the Book of Job is that Job never succumbed to the false illness belief that he somehow deserved his misfortune as a punishment or as a corrective. Instead the story makes it clear that Job was chosen to suffer because of his strength of character, to demonstrate his unconditional faithfulness.

    There's a similar teaching in the Book of John: As he went along, he saw a man blind from birth. His disciples asked him, 'Rabbi, who sinned, this man or his parents, that he was born blind?' 'Neither this man nor his parents sinned,' said Jesus, 'but this happened so that the works of God might be displayed in him.'

    I do find it useful to hold onto the thought that the meaning of suffering may become apparent in hindsight. I can hold onto that thought without the precondition that the suffering must end or that I must know the meaning now. In my better moments, I can wait.
    Nielk likes this.
  5. Nielk

    Nielk

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    nature..jpg

    Life is not the number of breaths one takes, but the number of breaths one does not take upon seeing mountains, forests and buildings. Anonymous

    Attached Files:

  6. anniekim

    anniekim Senior Member

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    Thank you for such an inspiring thread
  7. Carrigon

    Carrigon Senior Member

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    I'm not the same person I was before I got sick. I was spiritual before, but I'm very different now. I don't know why we go through all the horrible things we go through. I've had three near death experiences from this disease. And guess what, I didn't see Jesus, I didn't see the pearly gates. There were no loving relatives waiting for me on the other side. I didn't see hell either. I saw what I was meant to see. And I believe that each person sees different things. Many years after I had the experiences, I met a few people who were able to explain some of the things I saw. And they made sense. Some of what I saw is actually in books about near death experiences, so I know it was real. I didn't know about the books till years later.

    It's hard to say if I'm more spiritual now. I would say, I try to listen to God more now. I try to do what I feel I'm being pushed to do.

    More compassionate, probably. I definitely believe people when they tell me they are sick or hurting.

    I always believed that everything happened for a reason. But I don't think we always find out why. Sometimes we do, later on.

    And maybe we aren't always meant to know the why of things. Some things you just have to leave up to God.
    Nielk likes this.
  8. Nielk

    Nielk

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    Thank you Carrigon for sharing your feelings.
    I think that it's a great testament to you faith that even with all the horrible experiences you endured, you are still mindful of things happening for a reason even if we don't understand it at the time.
    Sometimes things that we think are good for us, turn out to be bad and vice versa.

    " Some things you just have to leave to God" - what wise words!
    It reminds me of a Zen Monk story. Maybe you heard it. it's pretty famous.

    like the one about the Zen monk who lives outside a poor village.

    One day a Zen monk walks into the village and there's great jubilation.

    He inquires into what's happening and the villagers tell him that they've acquired a new horse; a symbol of wealth and status at the time. They tell him how great it is that they have this horse and all he does is shrug his shoulders:

    "we'll see..."

    He comes back a few days later and a group of the villagers have crowded around an injured boy. The zen monk finds out that the boy was riding the new horse, fell off and broke his leg. The villagers shakes their heads, worried and tell him how terrible this is. He shrugs:

    "we'll see..."

    A few weeks later the monk returns to the village; this time there is great commotion...a war has broken out between the territories. All the male villagers must go and fight, except for the boy with the broken leg, which has not yet healed. 'Isn't it wonderful that he broke his leg...now his life has been spared', exclaim the villagers. The monk smiles and shrugs:

    "we'll see..."

    So, we never really know what will be the ultimate result. Only God knows.
  9. Carrigon

    Carrigon Senior Member

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    Sometimes, when you look back over your life, you can see how certain things were meant to be, or how you were being prepared to handle certain things in your life. I have things that go back to my childhood where I was definitely being prepared for things I've done since becoming sick. I still don't know the why of it, though. Why me, why this. I don't know. Did I choose it somewhere in the ether? Who knows. But had those things not happened to me, I wouldn't have gone on to do the things I've done. Other things from my childhood experiences probably saved my life in recent years.

    I think we might not know the why, but there are underlying reasons for things. And the world is alot more than just what we can see. And probably the hardest part of living is learning to accept that you may never know the why of certain things. You might not even get to know the truth when you die. I think that's where faith comes in and you just have to believe that God is doing all this for a real reason. Maybe we're being prepared for something else. Something in another dimension. Those of us who have survived CFIDS/ME for many years, we are the strongest warriors, alot tougher than we seem.
    Nielk likes this.
  10. Mr. Cat

    Mr. Cat Senior Member

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    Suffering was what moved me toward a spiritual path, and has been the raw material for much of my spiritual exploration, as that is what I had to work with. The exception has been when I have had extended periods of brain fog. When the bodymind "hardware" is damaged, the spiritual "software" doesn't work too well on it. I don't think there were any spiritual lessons learned during those times. I think brain fog runs on and disables the same neural pathways that allow compassion and expansive spiritual experience, so these "ah-ha" lessons sometimes learned from other kinds of suffering are unlikely to be experienced during brain fog.
    I agree that meaning in suffering is usually only arrived at in retrospect. After such periods, who knows what meaning I can make out of them? I'm coming out of a 9-month crash of intense brain fog, and noticing my response. I have hope - that I can live a more functional life, and maybe even achieve some dreams. I have ecstatic gratitude for each moment I am in a good mood or can enjoy an activity I wasn't able to before. On a personal level, I also feel somewhat empowered and effective, as I fought the illness mightily for 9 months using all manner of supplements and techniques, and seem to have come out of the worst of it.
    If we can harness great suffering to grow, that's great, but what doesn't kill us doesn't always make us stronger, especially with trauma, and I would categorize CFS as traumatic: http://www.psychologytoday.com/blog/insight-therapy/201008/what-doesnt-kill-you-makes-you-weaker
    I think that what can be practiced through discomfort is our capacity for seeing reality clearly as it is, not as we think it should be (more suffering!), and our ability to radically accept that reality. Several years ago, I was faced with what I saw as a philosophical quandry in relation to my chronic illness - hope or acceptance? Accept that things are unpleasant and try to be equanimous about it, or dare to hope that they can be better, risking the suffering that comes with a dashed hope. I have used both approaches at various times, but have recently been leaning toward hope.
    Nielk likes this.
  11. Nielk

    Nielk

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    Hi Mr. Cat,

    Thank you for sharing your feelings.
    I'm glad that you are finally coming out of your 9 month crash. It's like winning a battle and I commend you for fighting on and not give it up.
    It's interesting that you bring up the quandary whether to have hope or acceptance. I am sure that many of us struggle with that balance.
    I have also had the worst year of my 9 year struggle and my husband just mentioned to me last week-end that he can see that I have given up in this last year. I don't know which happened first the subconscious "giving up" and then feeling worse or the feeling worse and then giving up. If I really think about it, about a year ago, I went through a very stressful situation and was depressed about it and that might have caused my decline in health. It's hard to have hope when you are in the midst of suffering and despair yet, I think that that is the time when we need hope the most. I guess as long as we have a breath, there is hope.
  12. Mr. Cat

    Mr. Cat Senior Member

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    Hope is definitely a difficult one. It is certainly easier to have hope when you have good reason to. What made the difference for me was how hope felt in the moment - good. I'm not necessarily beating the drum for hope, it is just a strategy I have used occasionally.

    I think there can be meaning and growth through pain and suffering if we can find more adaptive ways of living because of it. If we can't, well then it's not much fun...
  13. Lou

    Lou Senior Member

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    Thanks, Nielk, for starting this thread. I've enjoyed reading through it. NDE's fascinate me and I wonder, Carrigon, if there's more of yours you'd be comfortable in sharing? By the way, on first glance thought you went by Carringon, which sums up pretty well what happens with us. I mean, we're steamrolling through life, many of us oblivious to real failure, real hardship(relatively speaking) and we hit this brick wall they call me/cfs. So now, we carry on, best we can. There's probably some like me, with regard to the bigger scheme of things, needed a good shakedown to get priorities in line. So, it's been difficult in the extreme, but it's been a learning thing as well.

    Re Ember's post #25, anyone else notice reincarnation seems implicit in the disciples' question? "Rabbi,who sinned, this man or his parents, that he was born blind?" Think about it, assuming there's not much sinning going on in the womb, the blind man, with re to the disciple's question only, would have had to sin in a previous life.
  14. liquid sky

    liquid sky Senior Member

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    I never thought about it that way, Lou. Interesting.

    I am also fascinated by near death experiences. I would be interested too, Carrigon, if you would want to share more about yours.
  15. anniekim

    anniekim Senior Member

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    Bit brainfoggy, feeling rough etc but thought this story of someone asking Jesus why was the man blind was to illustrate that the suffering was not due to the sin of anyone as explained in Jesus reply. . .

    I suppose my take on suffering is from the Christian worldview that this world is broken and there will be casualties. However, we have the promise one day God will wipe away every tear and in the meantime He will give us strength to endure if we look to him (although sometimes it can feel like one is hanging on by one's fingertips, if that) Not entirely sure I have found meaning in being severely ill with m.e for many years. I've certainly learnt some things, developed more compassion (I hope), a little less quick to judge (again I hope) but I still would have preferred to have had learnt these things through less suffering. It's hard, as others say, to see meaning whilst you are still in the midst of suffering - my m.e has got worse over the years I've had it.
    Sallysblooms likes this.
  16. Carrigon

    Carrigon Senior Member

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    I will tell you this, I was still me, but I had no body anymore, and the people who were with me there, they had no bodies. I could feel their presence, I knew they were there, and they spoke, but it was like telepathy. It wasn't like words exactly, it was like you just knew what they wanted and where they wanted you to go or what they wanted you to look at. And it was forceful, like if you wanted to look at something else, they could steer you away from it.

    If you've ever heard it said that it's like being on a submarine, that is exactly what it was like. Some kind of ship with portholes and rooms and you could look inside of them, but only at what they wanted you to see. They show you things.

    I was given a choice of coming back here. I've pretty much regretted fighting to come back every single day of my life since then. If I knew then how many years of endless suffering I would go through and all the horrible things I was going to go through, I wouldn't have fought so hard to come back here.

    There is no pain, no sound, no hunger there. You just sort of move about. I wasn't scared. The people who were there, they were my guardians, what most people would call their angels or fairy god parents sort of. I just knew they were my personal guardians in charge of me. And they weren't people I believe I personally knew or had met, or if I had, I didn't remember them. But I knew who they were, that they were there for me. I didn't see anyone else, didn't feel any other presences there. Just me and the few who were there for me.

    Time moves differently there. Things happen at a completely different rate than they do here. You could probably live years and years of our time there, and yet only a few minutes of time here will have gone by.

    That experience is seared into my brain. I've never forgotten it. I've wanted to go back ever since. The other two experiences, I wasn't exactly in the same place and I was shown other things.
  17. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Carrigon, dumb question here. I have heard a lot of stories, but none like a submarine! That sounds scary, closed in. Did it feel closed in?
  18. madietodd

    madietodd Senior Member

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    I don't always believe in reincarnation, but I never completely don't believe it either. I wish I had had experiences that let me feel a certainty about what's next, but I haven't.

    That hasn't stopped me reading and thinking about it. When I need to make peace with my ME life, I always slip back into the reincarnation perspective. It's the only thing that makes any sense of this struggle, for me. For some reason, this point of view helps me stop struggling, to relax instead of fighting. Since fighting takes energy, this is positive for me.

    I love this thread.
  19. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I have always been a Christian. I know that no one is guaranteed a healthy life. Most people have health problems. We do know we are not alone.:D I have been able to return to church after POTS began three years ago. That was a big step, although hubby pushes me in my w.chair since it is large.

    I have become even more sensitive to others and always wonder what is wrong when someone is in a w.chair and I always smile at them. Now I know it can happen in the blick of an eye.

    I appreciate everyone and everything much more now. Priorities too. People are so important and also KEEPING COOL, ha. With POTS, that is number one!
    [​IMG]
  20. Carrigon

    Carrigon Senior Member

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    Some of the things I've seen are definitely in books, but I didn't know it at the time. This happened to me twenty years ago.

    It wasn't closed in or scary. But it was very much like a ship. There wasn't anything to be scared of at all. I was really just very curious to see into all the rooms, but I wasn't allowed to.

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