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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. Sallysblooms

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

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    I read her book even though it is buddist. I found a few good things in it. I believe illness happens for many reasons. Viruses, accidents etc. God doesn't give it to you. People always think he won't "give" you more that you can handle. Not sure who came up with that.:confused:

    He is with us when we are sick and he guides me as I am healing. We are not guaranteed a healthy life. We are not alone when ill or sad though. That is wonderful.
     
  2. Cort

    Cort Phoenix Rising Founder

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    Didn't get that at all but then again this stuff work for me and if it doesn't I imagine you would think it was just words. Buddhism is so not ' cheerleadery to me. It's very much about not shying away from the negative in the world and not trying to hold onto the positive; kind of the opposite of cheerleading really.

    I see the title as a kind of koan.....How to Be Sick...when you're sick you're sick so it would be best in those circumstances to learn how to be that way. Since its a difficult way to be there's some real learning involved.

    I agree that if Toni could have written "How to Be Well" she would have. Unfortunately she's still ill.
     
  3. Cort

    Cort Phoenix Rising Founder

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    But Dreambirdie - you just described a "How To" program:cool:......feel what you feel, embrace it full and find ways to be with it - that's all very Buddhist and it fits well in my opinion with what Toni says in her book.

    The phrase what you resist persists permeated EST when I did it and I imagine it does Landmark (its successor) and many of these types of transformational type approaches. It's a really powerful (if kind of bizarre) idea but I agree that when I do it right it does work very well.

    I can understand the dismay at the Mozart reference - it was not one of the stronger parts of the book :).

    I do think that in any situation learning is possible - it may not occur - it probably doesn't occur most of the time in negative situations but I do believe its possible.
     
  4. Cort

    Cort Phoenix Rising Founder

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    Really a rough post Jenbooks. Does Toni really need to experience grisly suffering or sickness approaching radiation sickness (her symptoms may be as bad actually) in order to write on her experiences with illness? She lost her job and her career, she rarely goes out, at times she's too sick to have her own family come in her room during the holidays...I know it gets worse than that (financial ruin, homelessness, poor living conditions) but I think she's experienced quite a bit of illness in her life.....
     
  5. KC22

    KC22 Senior Member

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    A buddhist friend gave me this book and I liked it..... A lot of what she wrote, I related to... I have learned more about "Being" than I ever knew before. I was busy "doing" as a teacher and no, I didn't look at the birds or trees much.. We still have a choice, hate the illness or accept the symptoms for now. Hating takes more energy that I don't have, so I try the best that I can to accept it for today. Some days I do better at this than other days.

    My friend died of cancer 2 months ago, and I think she would have liked to stay here with her soulmate and look at the birds and trees.

    Thanks, Toni, for sharing your story.
     
  6. Corinne

    Corinne

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    well said.....one word...ACCEPTANCE. does it make you happier to resist? or does it make you more miserable? My experience says, more miserable. A girlfriend of mine who has had ME/CFs for 20 years told me a gem a few years ago that I didn't get til recently..."I didn't start feeling better until I accepted this illness". At the time it felt to me as though it meant caving into to it and never wanting to be well. It means anything but that. It means peace (and less stress...like flowing with the river not paddling against it). For me there is no hope lost in acceptance. Hope to get better remains....and peace presides.
     
  7. Corinne

    Corinne

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    PS...love the new photo, Cort!
     
  8. jenbooks

    jenbooks Guest

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    Cort, you've done better than most because you were willing to sleep outside, and avoid toxic load on your system, even when it was a tremendous hardship.

    That might not work for everybody, or even most, but I'm of the opinion there are many options people don't try. Like hyperbaric oxygen--a home chamber, etc. Lots of things, I'd have to know they tried them all before they tell me how to be sick.

    Referencing my other post--no, I'm not at all saying she has to be a Fukushima victim to write the book. I'm saying that there is something disingenuous to me about a wealthy westerner lamenting the loss of her privileged job or that she's sick in bed, and talking about how to suffer wisely and find the silver lining----and not at least first really understanding the first line of Buddhism: "Life is suffering." To acknowledge that suffering is distributed on a bellcurve through time and space, and that many have suffered so much worse than she has. If she really can embrace that, and acknowledge that, and that her suffering is relatively minimal compared to an AIDS victim in certain cultures completely abandoned by their families alone in a hut suffering agonies as they die...that there is much more horrific suffering...as well as of course many happier and luckier lives that just play themselves out without too much suffering until death intervenes...maybe I'd listen more closely.

    Laura Hillenbrand was quoted once as saying, and I'm totally paraphrasing, that she never assumed she deserved to avoid suffering. There is something about Toni's laments that makes me feel she thinks it was a very unlucky blow, and that now she is applying these spiritual principles from her bed---now she is listening to Mozart--no, it doesn't wash with me. There are many other interventions she could try to get well...many. This is my opinion, I've felt it for ages, now I'm saying it, I don't see that it should be unpopular.

    I agree any techniques that calm the mind and help one handle adversity are wonderful. That's not what I'm talking about. I find your story far more inspiring, and relevant, frankly. You've taught me more about how to be as well as possible when sick.
     
  9. Dreambirdie

    Dreambirdie work in progress

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    Yes Cort, I have done a lot of inner process work, have read extensively on this topic, and have actively participated in several spiritual traditions along the way, including a couple of Buddhist communities. I was interested in inner process as far back as high school, even before I became ill. In my 30+ years of investigating my inner reality, I have become well acquainted with the workings of my own "crazy mind" and the places where it sabotages me and sends me down the slippery slope into self-loathing, depression and despair. Along the way I've found a few key "things" (questions, reflections, reminders) that tend to work for me. I would not personally describe my commitment to inner process as a "HOW TO" program, and I think that anyone who has taken inner reality seriously would be quite reluctant to do that.

    When I describe feeling what I feel, embracing it, and finding ways to be with it, that's not exactly a technique, at least not anymore than describing sex with my partner as a HOW TO technique of: taking our clothes off, lying down in bed, and attaching our genitals together. There's many other important details along the way, that are very personal, that require sensitivity, careful attention, open-hearted involvement, and in-the-moment response. Most of this can't be described in words, and if it could be described for what it is in one moment, that moment would quickly change to another that needed an entirely other description.

    The psyche is fluid, and the mind is slippery. Neither will fit into a box, at least not any longer than a few seconds. That's why I was sure to say "there are no rules and no one thing that works all the time." I wish that Toni Bernard recognized that. If she did, then maybe the book would have more appeal to me, but then it would have to be an entirely different book without a HOW TO title.
     
  10. Ember

    Ember Senior Member

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    Thanks, Cort. You neither trivialize the suffering of ME nor exhort us to heal ourselves.

    Your quotation, the bitterest cold is necessary for plums to flower, reminds me of Viktor Frankl's, What is to give light must endure burning. According to Frankl, Everything can be taken from a man or a woman but one thing: the last of human freedoms to choose one's attitude in any given set of circumstances, to choose one's own way.

    In Frankl's experience, the grace of wisdom can touch us even in grisly suffering: If a prisoner felt that he could no longer endure the realities of camp life, he found a way out in his mental life an invaluable opportunity to dwell in the spiritual domain, the one that the SS were unable to destroy. Spiritual life strengthened the prisoner, helped him adapt, and thereby improved his chances of survival.

    We don't need grisly suffering though. Frankl's example of an incurable illness strikes closer to home for me: We must never forget that we may also find meaning in life even when confronted with a hopeless situation, when facing a fate that cannot be changed. For what then matters is to bear witness to the uniquely human potential at its best, which is to transform a personal tragedy into a triumph, to turn one's predicament into a human achievement. When we are no longer able to change a situationjust think of an incurable disease such as inoperable cancerwe are challenged to change ourselves.

    Of course, it's always easier to be respectful when we are thinking of cancer.
     
  11. Cort

    Cort Phoenix Rising Founder

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    Thanks Dreambirdie - I now see what you mean about the "How To" (I wasn't referencing the title before.). I agree that the mind is slippery and really, really hard to catch a hold of - even glimpse.

    Here's one thing I do to alter 'my reality'. This is from Landmark Education...I create a possibility - like being calm and experiencing love or enjoying nature - and then I step into it. This does shift my reality for a bit; I can create periods of calmness, love, etc. I think this is kind of similar to what Gupta does; he has you go back to a time when you felt well - experience that feeling and then step into it. Either way you are kind of moving yourself into different mode of being. What do you think about this?
     
  12. Cort

    Cort Phoenix Rising Founder

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    Thanks Jenbooks. We'll see how "How to be Sick" progresses.

    This was, honestly, one of the less powerful chapters for me. My favorite part was the "Its just the weather" idea...the silver lining of enjoying classical music was not very powerful for me and I tried to look for more in that area. The idea that in order to handle a chronic illness well, particularly one that responds poorly to stress, it helps to do some kind of 'spiritual' or mindfulness work (which I think is good for anyone anyway) is more powerful for me than the idea that enforced down time opens up possibilities such as enjoying classical music or 'snails' :cool:.

    The broken glass idea will have appeal for some but my guess is not that many as its rather philosophical; when I get it right it, though, it does relax me in a strange way and it takes some of the burden off of being ill. I think buried deep, particularly for those who have been ill for long we must carry a burden of illness (as does anyone with a chronic illness) - a feeling of shame or wrongness - and the idea that illness is part of the human experience ,that a certain portion of people are going to experience that does make it easier to handle.
     
  13. Dreambirdie

    Dreambirdie work in progress

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    Hi Cort--I'm glad you have found something that helps you alter your reality. If it works for you and helps you feel better, then it's a good thing.
     
  14. ixchelkali

    ixchelkali Senior Member

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    I'm glad that you're looking at and discussing these questions, Cort. It's something I've thought about a lot since getting sick. I was fortunate in that when my insurance company referred me for the requisite CBT, I got a psychologist who had herself lived with chronic pain; she believed me to be mentally healthy and physically ill, and aimed the CBT at helping me to find some kind of peace with my changed circumstances and life. She was the one who first set me on the path of learning about a Buddhist-like approach, which I found very helpful. Then when Toni's book came out, which used that approach to specifically deal with chronic illness, the wisdom in her book really resonated with me. It hasn't made me less ill, but it has helped me to find ways to experience happiness, joy, and peace, even while sick.

    It's funny that I should read this blog today, because I just pulled out "How to Be Sick" to re-read.

    One concept (or maybe it's just the word) that seems to trigger a negative response in some people, is the idea of acceptance. I like the way Toni gets across the idea that acceptance doesn't mean giving in or giving up or acquiescing. Rather, it means looking squarely at what is, and dealing with that reality. Acceptance is something you do with your head up, not bowed down. Acceptance is what allows you get on with living.

    I hear a lot of people say "ME/CFS has stolen my life." I understand that feeling, but I'm not willing to let that happen. This IS my life. My life is one that includes ME/CFS. Right now, it's a life that is largely housebound, largely prone. Okay, so what I want to do is maximize the amount of living I can squeeze out of it. If I can't go for a BIG life, can I go for a deep one? Yes. By being as aware as possible of life while it's happening. Like hearing the sound of a wild snail eating. It's kind of like you can study the cosmos by looking at an atom. By finding all that's wonderful in my life as it is now, not waiting until some possible time in the future when I'm well. By finding ways to LIVE life, even if I can't DO much.
     
  15. ixchelkali

    ixchelkali Senior Member

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    I don't really look for a silver lining in having ME/CFS (although I may have accidentally stumbled across one or two). The reality is that I am sick. Even though I may do all that I can to get well, right now I am ill with a disabling illness which doesn't allow me to do most of the things that used to bring me pleasure. I can be miserable about that, or I can look for new things to give me pleasure. I can be sick and angry and miserable, or I can be sick and enjoy life. Either way, I'm sick. It's not what I would choose, but it's what I've got. This illness has taken so much from me (I won't list all the things, it's pretty much the same list for all of us), why would I want to give it any more of my life? Most of it is beyond my control, and I don't have a choice about it. But I can choose my attitude. I can choose not to let it destroy my spirit or my enjoyment of life.

    Pain. Pain is a part of life. There are all kinds of pain and everyone has some pain in their life, some more than others. There really isn't a lot of point in comparing one person's pain to another's. I've known people whose lives have been filled with misfortunes that would crush most people, who managed to live life with a grace and equinimity that awed me. The Buddhist philosophy is that pain is inevitable, but suffering is optional. I had a lot of trouble with that idea. It comes from the concept that suffering comes from dissatisfaction, from wanting things to be different from what they are. If you give up wanting things to be different, you no longer suffer, even though the pain is still there. But how can you NOT want things to be different, when faced with pain and evil? I don't pretend to really understand it, and I'm not a Buddhist. But I think it comes from a kind of ninja warrior acceptance. That it, a spiritually disciplined level of acceptance of reality in the present moment. You can still work to change things in the future, but right now, in this moment, you let go and say "what is, is." And when you quit denying and fighting against reality, it frees up a lot of energy. Like I said, I have a lot of trouble with the concept. But one thing I do get: pain is part of life, and I love life fiercely. If pain is part of the human condition, then I will embrace it as part of the whole package. For me, it's part of being fully human. I'm not going to say, "I love life, but only the good parts." For one thing, I don't think I'm wise enough to judge what the "good parts" are; some things in my life that seemed pretty awful at the time have led to things I treasure. For all I know, maybe the painful parts are the good parts BECAUSE they make us more fully human. I'm not wise enough to sort it out, so I'm just going to embrace the whole thing and enjoy the hell out of it, squeeze the most out of it I can.
     
    jenbooks likes this.
  16. Ember

    Ember Senior Member

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    As I understand it (from Eckhart Tolle), there's always a second chance. Acceptance is an inner way of being. So if you do want things to be different when faced with pain and evil, then accepting that you want things to be different becomes your second chance.
     
  17. Cort

    Cort Phoenix Rising Founder

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    Really inspiring Ixchelkali.....I see more and more books by psychologists who are focusing on Buddhist practices that increase well-being and joy. Its kind of fascinating to see - I do see Buddhism as more of a mind training protocol than anything else although I imagine that any religious practice would provide one more peace in the face of illness.

    It does require a kind of radically different approach; you have to kind of cast away the normal things that bring you value and pleasure - making money, buying things, supporting others, seeing friends and find another way to get value. It's a very different world. CFS does 'steal old lives'; and that's something we can regret and mull over or accept it (not easy) and then see what's possible:)
     
  18. jenbooks

    jenbooks Guest

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    This is true, in our western culture anyway.

    I completely agree that any way you can "relax and flow" is helpful. EFT, buddhism, Gupta, Landmark, meditation, a massage, *anything*. A spiritual life is essential, as well. Looking forward to your new blog.
     
  19. Ocean

    Ocean Senior Member

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    I have similar thoughts about her work Jenbooks, except would probably never have been able to articulate it well. Thanks for sharing your viewpoint, especially since it's not one I've come across too often and sometimes it can be hard to express a less "popular" opinion.
     
  20. Ocean

    Ocean Senior Member

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    I'm afraid I won't be able to articulate myself well here, especially as I'm feeling terrible today. I'm not sure if this is similar to what you were saying Jenbooks and I hope this is not off topic but I think it relates to the previous discussion about TB and health and privilege.

    TB wrote on Psychology Today that illness is "the great equalizer," saying that the wealthy, the homeless, and in between are all in it together, as she observe from her doctor's waiting room.

    I strongly disagree. The less well off in the U.S. have nowhere near the same experience as the wealthy when it comes to healthcare and illness. If anything illness is not only NOT a great equalizer in my opinion, but it serves to highlight the great disparity between classes.

    Lack of privilege can affect health experience, as can variations in illness. For example someone who is healthier and can still do some work like TB can may find it easier to accept loss of a career. Someone with money and social support is much more likely to be able to afford medications, supplements, paid help, specialized treatment and more. A homeless or destitute person with CFS/ME will have a very different illness experience than someone in TB's position. This is especially important as disability often sends people who don't have significant resources and support into financial ruin. TB's comments about "the great equalizer," if I am understanding them correctly, seem to be denying and dismissing the effects of privilege on health, which I find disconcerting and even offensive.
     
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