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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
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Article: Its Just the Weather, Baby! Toni Bernhardt's How to be Sick (Blog #3)

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 21, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Merry

    Merry Senior Member

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    Thanks, Cort. Calming wisdom.
  3. Nielk

    Nielk

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    What you Cort and Toni are essentially saying (the way I understand it) is that one needs to step away from one's reality to get a different perspective and then can look at the situation with a different (changed) attitude. It helps because you feel detached and therefore can be more pragmatic as to how to deal with it.

    The fact that illness is a reality in this world and will strike everyone at one point in their life is not necessarily true. I've seen people dying of old age with no major health problems. I spend part of the year in an adult gated community in Florida.I see people in their 80s and 90s going swimming, jogging, gulfing, playing tennis and socializing.
    I love watching them because I feel so good knowing that even at that age, they are fit and enjoy life at it's fullest. I talk with them and they are truly happpy! I'm not saying that they are all like this. Some need wheelchairs and do have health problems but, I would say the majority don't.

    I don't think that it's a necessity of life that at some point we will definitely be strikken with a severe diasabling disease. I also think that it's pretty sad to have to go through such suffering to get to a point to appreciate the little things in life. This point has always intrigued me. That's why i started the thread "suffering and spirituality" because I wanted to see if it's an absolute truth that suffering makes us more aware and more apt to seek spirituality in our lives. I personaly, am not sure about the answer to this. I guess it depends on the individual. For me, I was always spiritualy inclined. I always loved nature and was always inspired by it and appreiiated it's beauty and it's complexity.
    I always loved art and music. Both of these have been dimmed for me since I'm ill. Most days, I can't listen to music because the noise overloads my senses and ncreases my constant headache. I miss having music in my life a lot. With art. I still appreciate looking at art a lot but, cannot go to museums anymore because I can't stand for a long period of time. I used to paint a lot. Now, I have to have a "great" day to try to tackle it.

    I have been seeking "what have you gained by being this ill?" and I struggle with an answer.
  4. Cort

    Cort Phoenix Rising Founder

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    Nielk I am absolutely with you on this. I WAS spiritually inclined prior to CFS and that all dimmed afterwards. My appreciation of nature -w hich was so high before - dimmed as did the rest although I am much much better off than you. Carving a sense of beauty into ME/CFS is hard - and I think we must be building up some spiritual brownies or muscles somewhere by doing it. So CFS was not an opportunity for spiritual advancement for me - it knocked me out of the meditatiive work I was doing but now that its here - I see that kind of practice as being helpful and, absent anything good drugs, even kind of 'necessary'.
  5. Nielk

    Nielk

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    I agree with you Cort that being where we are and not being able to get real results or affect change, meditative work when possible is sometimes the only thing that helps.
    I've been working hard at achieving some level of meditation and it does most of the time calm me down or "balance" me somewhat. I am grateful for that tool.
  6. jenbooks

    jenbooks Guest

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    Cort, are you still doing meditation/brain retraining kind of exercises? I recall you saying these helped you.

    I think this is useful, Toni's article, but only to a point. My problem with Toni's work is it ignores the "rag and bone shop of the heart" (Yeats). The grinding suffering. The sleepless nights. The exhaustion. And worst of all, that this often is an illness that is neurological in origin--for instance the new idea of an autoimmune neurological illness--meaning that actual brain function, including mood, is affected. So it's almost like saying, Stop having seizures--to an epileptic. Some of the thought patterns may be equivalent to seizures...they are not simply thoughts.

    I never feel she gives me the low-down before talking of ways to deal with things. And also, she has a pretty good situation. She was successful, and her husband still works, so they are financially comfortable. So that doesn't address people who are sick on SSDI...and can't even try chinese herbs or acupuncture like she does.

    I just have mostly avoided her work because of this. I feel to some extent it has a lot of translated buddhist wisdom, and to some extent its pablum.

    And where do we draw the line at "its just the weather"?
  7. Corinne

    Corinne

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    I'm the opposite...ME/CFS has definitely been a source of spirtual growth for me..no question. Though I was a nature lover before also, my focus was on the physical (hiking, biking, skiing, whatever) not the soul...the SPIRIT. This article is a lot about what I have been focusing on for the past 2+ years...going with the flow of life and non-resistence with what is...reading Eckhart Tolle helped change my life, along with reading scripture. I wanted to share something I read this morning: In the Chinese picture-letter alphabet, the symbol for crisis is a combination of two characters - one meaning "danger" and the other "opportunity". You can look at it either way. I tend to look at it as the latter, now. More can be learned from life's trial than from it's triumphs.
    One more thing I use that helps...the phrase..."And this too shall pass"...in reference to your reflection on non-permanence.
    Thanks for posting an article about this. Hope we can do more as I can't begin to tell you what it has done for my life.:)
  8. Corinne

    Corinne

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    PS...If one can focus on "learning and growing" as the objective (the bigger picture) , than it is posssible that one can consider every obstacle as an opportunity. I know it's not always easy, but it works:).
  9. Cort

    Cort Phoenix Rising Founder

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    I do something every day. Its not organized at all actually - I just pick up things and try then out. For instance, the watching my thoughts and labeling them as just 'thoughts' without any real meaning...I did that for a day for so and I felt more relaxed. The next day it didn't work so well so I did something else. I have these sayings that I work off of..

    I think with regards 'its just the weather' that is in reference to how we react emotionally to a situation......It doesn't mean that we ignore feelings of pain or try to push through them but I think it works on the feelings of anger and upset that the situation is happening. It recognizes that our unconscious reaction to a situation can make it more difficult to bear. I think its about finding as good a place as you can i nthe midst of the storm.

    Financially I agree it appears that Toni is in a safe place and she does have a supportive partner - two very helpful things; in other ways, though - she's in a tough spot - at one point she talks about how difficult it was for her to not be able to leave her room to see her family visiting for the holidays....

    I would argue that her Buddhist training before she got ill was a big help. Even then - incorporating it into her life after CFS has clearly been a big challenge - its much easier to do this stuff when you're healthy :))).
  10. Cort

    Cort Phoenix Rising Founder

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    What a change we have all had...I was an avid exerciser as well....what a switch that has been....I would love to hear more about Eckhart Tolle. I like the crisis character. I imagine that sounds like pablum as well and I admit that I rarely look for the opportunity in a crisis but I imagine that hidden in them there are opportunities. I will keep that idea in mind - thanks!
  11. jenbooks

    jenbooks Guest

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    I know a lot of people like her work. I find it glosses over the suffering and tries to put a smile on everything. Sort of like a cheerful puritan, "Now, now, let's make the best of this!" "Put a smile on your face!" "You're sick, so deal with it--the best you can!" I can feel this cheerleader emphasis behind the buddhist stuff. And I really did like her essay on dukkha and dukkha dukkha...which was posted somewhere, maybe on Facebook.

    Generally, though, I don't find that honest (for *me*, not necessarily for others, since the book is popular). I think the title is very good from a marketing standpoint and terrible (to me, again, this is my opinion only) from a health standpoint, as it starts with the given that you're going to stay sick and have to learn how to do it well. "How to Be Sick". What does *that* say spiritually? I'd rather read, How to Get Well...if it was practical.
  12. Nielk

    Nielk

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    I think that the severity of the suffering has a direct effect of coping skills or "seeing the benefit/spiritual growth.
    The saying 'God only tests those who can take what he dishes" always disturbed me because it's not necessarily true.
    Being a child of Holocaust survivors, I have heard first hand of terrible atrocities. I have an aunt who because of what she went through during this genocide and what she experienced, went totally crazy and lived out her life in an insane asylum. I had a grandmother who lost two children that she was separated from to different camps. She didn't know what happened to them. After the war. She went out every day to the train station waiting for them to see if they would return.Sshe would do this every day for months. At the end, she heard of their deaths and this tragedy broke her heart. She never recovered from it and soon died from heart failure.
    For this reason, I have a very hard time swallowing the benefit of suffering. I'm talking about hard core suffering not just the incovenience of not being able to work and feeling fluish and have cognitive problems. I'm talking about hard core sharp pain, day in and day out without a rest for a long period of time. To see spiritual growth in such a setting, you have to have the strength of Job or the conviction of Abraham. I have neither.
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  13. jenbooks

    jenbooks Guest

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    Exactly, Neilk.

    And if she's going to talk about the upsides of chronic illness, or things you can do from your bed, etc, she should realize she is still talking as a privileged person. She has a bed. She has a home. There are levels of suffering way beyond that--like all the Fukushima, radiation exposed, sick and homeless people.

    She does not acknowledge the wider grisly aspects of suffering. She should read Humanity by Jonathan Glover, which is a history of wars. There is a great deal of evil, horrific suffering, torture in our human history. What about the suffering of the deer mauled by the lion? There is a certain narcissism and false marketing in talking to the privileged group of people who are in bed feeling like crap but not so sick they can't read, write, and not so poor they can't get whatever food, shelter, and treatments they want...and well enough to contemplate their spiritual advancement and knit in bed or whatever cheery things they want to do to encourage themselves that life is still worthwhile.

    Indeed, life is still worthwhile, but not necessarily for the reasons she says.

    Well, the book is popular, it's part of our culture--self-help, self-actualization, turning adversity into an advantage etc.
  14. Dreambirdie

    Dreambirdie work in progress

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    Nielk--I know what you mean. My parents' families were survivors of the Stalin holocaust. All of our relatives who didn't flee to the West during and after WW2 were deported to Siberia for being "enemies of the people," and many died there or came home crippled with diseases caused by starvation and exposure. My great grandmother was deported despite the fact that she was 80 years old and blind. One of my great uncles died as a slave in the uranium mines, the worst of the gulags. My other great uncle was dragged out of bed in the middle of the night and shot, in front of his wife and child, by Soviet soldiers. My parents and their immediate families got out alive, but the impact on their lives, despite their worldly success and their well-adjusted outer appearance, was very apparent. Lots of PTSD and survivor guilt, and gnawing worry about those left behind for close to 50 years to suffer the oppression of the brutal Soviet state.

    To find a benefit in this kind of suffering seems rather absurd. Often the best one can do is survive it and hopefully find enough love and support to make one's present life worth living. But if that isn't possible, then there should be no blame for that.
  15. Dreambirdie

    Dreambirdie work in progress

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    JB--

    I didn't care much for Toni's book either. I was disappointed at the lack of depth, emotion, and insight. I found the recycled Buddhist wisdom/self-help advice to be a bit formulaic, very mental, and not very personal in a feeling way. Maybe this is due to the fact that Toni was an attorney by profession, (most attorneys score as T's, not F's on the MBIT), and not a therapist or counselor, and that seems to color her approach to suffering. In many passages in her book she assesses "the problem" of suffering mentally, and then finds a "how to" course of action to "remedy" it. There is often a by the book angle on suffering, as if it is a neat and simple problem to work out, and as if there is some kind of agenda that you can impose on yourself to make that happen. I always get more out of book when someone spills their guts, spells out the details of their struggles, and then talks about what has worked for them personally, instead of taking an already established philosophy, like Buddhism, mixing in an acceptable dose of suffering and then dressing that suffering up to make it palatable for the mass market.

    What I liked least is when she espouses the "blessings of the illness." On page 28--regarding the truth of annica, "the bittersweet cold that penetrates to the very bones" she writes: "Without the bitter cold of giving up my profession, I wouldn't have the fragrance of Mozart and Beethoven wafting through my bedroom. (Of course I could have enjoyed the fragrance before I got sick, but the fact is I didn't.) Without the bitter cold of having to stay in bed most of the day, I wouldn't be so attuned to the changing seasons; I never realized they are right on view outside my bedroom window." and down the page: "There are so many ways I've "grown" ONLY BECAUSE OF THIS ILLNESS..."

    I find it really annoying when people try to convince me my three decades with a debilitating neuro-immue disease is a f-----ing blessing. It's almost as bad as being told I "created my own reality."

    I have found that the hardest and most necessary part of dealing with my symptoms is being able to honestly face them as they are, without pretending they are something better or easier than they are. If I resist my symptoms by minimizing them, or trying to transcend them, I ALWAYS make them worse... because that which I resist will definitely persist! So having a HOW TO program is very much contra-indicated in my case. I do best when I allow myself to feel what I feel, embrace it fully, and find ways to be with it and express it. There are no rules, and no one thing works all the time. The more willing I am to be honest with myself about my suffering, the more free I am from it. Yes, it is VERY STRANGE how that works.
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  16. Dreambirdie

    Dreambirdie work in progress

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  17. anniekim

    anniekim Senior Member

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    Thanks for the interesting perspectives on here. Nielk and Dreambirdie, I'm so sorry your families experienced such horrors and evil, truly horrific.

    As a Christian - and I appreciate not everyone shares my faith and outlook - I feel it is acknowledged that great evil can happen in life. There is no rhyme or reason to it and it's horrific in how random it is. As you said, some people dont recover from such experiences.

    The Christian worldview is that God grieves for the evil and suffering in this world. The hope lies in God's promise that one day all will be reconciled to him and he will wipe away every tear. In the meantime, I know people have experienced and continue to experience utter horror and i dont know why. All i know is we are called to challenge this and to weep with those who weep.
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  18. Nielk

    Nielk

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    I'm sorry DB that your family too had to go through such inhumane horrors! We are only human and to have experienced or seen these type of imhumane suffering has to have an effect on anyone. Big time PSTD. I even find that the next generation carries this PSTD evebthough they didn't experience it themselves. It's the elephant in the room when you grow up and it's like part of your DNA. By osmosis, you absorb their past pain and you have guilt and nightmare about the whole situation.

    I have read extensively and heard first hand the atrocities commited during the Holocaust. My question is, what good came out of this? what good came out of over 7 million people being butchered and gassed? What can I learn from this? I can assure you that I can't meditate this nightmare away. This is not the only mass genocide that has happened. History is full of them.

    Suffering, is a very underestimated word. Do you suffer when you get a misquito bite? Do you suffer when a child is misbehaving? Do you suffer when your mother is shot in front of your eyes just for being Jewish?

    For that reason, I find that books dealing with practical approaches to suffering like the one by Toni Bernhard, to be over simplistic. At the other hand, it seems that she has helped many with coping mechanisms and with bringing calmness into their life. She writes well and "borrows" many wise sayings of how to cope with what I would call mild annoyances.
  19. jenbooks

    jenbooks Guest

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    DeeBee, agree so much with your post. "taking an already established philosophy, like Buddhism, mixing in an acceptable dose of suffering and then dressing that suffering up to make it palatable for the mass market...."

    Exactly. I did not read the book, though, just excerpts on my FB until I unfriended her out of annoyance at the constant promotion, and a few essays on the Psych Today blog site. But I can't really believe she says she didn't listen to Mozart or Beethoven or notice the changing seasons before. That seems a gross exaggeration.

    But, you know, as they say--whatever gets you through the night. It seems a lot of people like her book, and found parts useful, so if it helped people at times, that's fine. It's just counter to my approach, that's for sure.
  20. biophile

    biophile Places I'd rather be.

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    Scientific and medical ignorance is the cause of suffering for ME/CFS patients. ;-)

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