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Toni Bernhard 2nd blog post

Discussion in 'Spirituality and ME/CFS' started by Nielk, Mar 30, 2011.

  1. Nielk

    Nielk

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    Toni Bernhard, author and person with CFS, offers her 2nd blog post. http://bit.ly/gJ0XA4

    I'm in middle of reading her book "How to be Sick".

    Her emphasis in the book and blogs is the teachings of Buddha which she had embraced even before she became sick with CFS. Of course, she went into the study of Buddhism
    more deeply since then.

    To me, it parallels the serenity prayer:

    God grant me the serenity
    To accept the things I cannot change,
    Courage to change the things I can,
    And wisdom to know the difference.

    Except that it seems much more passive for my taste.
    I am definitely by far not an expert in Buddhism but, from what I read so far from Toni's book (and Cort's comments on it), it seems that "desire" (of any kind) is to be avoided.

    If for example, you find yourself ill -if you can just experience it and not give into the desire to be healthy, it will be much easier to tolerate.

    I might be totally wrong with my interpretation and please correct me if I'm stating this incorrectly.

    The problem that I have with this philosophy is that it doesn't spurn you into action.
    There might be a lot of things that you might be able to do to alleviate your suffering instead of just letting go of the desire to get well. In addition, you might say that what if you are suffering from an illness that nothing has been able to help so far, isn't it better to just accept the fact that you cannot change things, it's not in your hands? How do you know when you tried enough things? How do you know that had you tried the next remedy out there, it wouldn't have helped? If you give up the desire to want to get well and accept this stage of life just for what it is how do you know you have not shortchanged yourself and missed out on a possible cure?
     
  2. bernhard11

    bernhard11

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    Hi. Toni Bernhard here. I love the serenity prayer. I've used it myself. Thanks for reminding me of it.

    I just wanted to comment on your interpretation of my blog post. Just as we say that the Eskimos have 39 words for snow, in Buddhism, there are many many words for desire. It's too complex to go into here, but you'll notice that in my post, the desire I refer to, I call "self-focused desire." This is a craving or a longing to get what he cannot have, to change what we cannot change. To me, continuing with that desire only leads to suffering. And so I work on accepting what I cannot change. But I also say not to mistake "acceptance" for "resignation." When I say "acceptance," I just mean that my life as it is today, at this moment, is my starting point. From that starting point -- that place of acceptance -- I'll never give up looking for new treatments or for new ways to live well with chronic illness. But I feel so much more at peace if I start with an open acceptance of my life as it is right now.
     
  3. Nielk

    Nielk

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    First of all, I am honored that you read my post and took the time to answer me. Thank you!

    It's funny, I have your book on my coffee table because I'm in middle of reading it and my daughter-in-law came over and saw the title of the book "How to be Sick" and she started laughing and saying shouldn't it be how NOT to be sick? - why would you want to read a book telling you how to be sick? That's the whole point though I'm starting to understand. In her ignorance, my daughter-in-law, stumbled on the whole concept.
    There are hundreds of books out there telling you how not to be sick.
    Yours is unique in that it teaches you how to cope in a positive way within your illness. The way I understand it from your book is that the fact that you are ill is a
    truth. If you accept that it's your reality, it is part of who you are right then at the moment, it's easier to manage. You are sating it's ok, I can deal with this - which will serve you much better then if you keep saying (thinking), I don't want this in my life.

    I am trying to integrate this concept of acceptance with the will of trying everything I can in order to get better.
    I crave that feeling of innermost peace within myself which you describe.

    Your post is helping me in the goal of that understanding.

    Thank you,
     
  4. bernhard11

    bernhard11

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    Hi again. Yes, you've stated the theme of the book just as I see it -- illness is our starting point (for now anyway). If we accept that, we'll be much more peaceful and calm (which is good for us physically) as we continue to look for treatments and for ways to live with more equanimity and joy. Funny story about your daughter-in-law! All my best to you, Toni
     
  5. Nielk

    Nielk

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    I just finished your book today.
    It was great!
    I can relate to so many things you describe going through.
    It is so full of advice of how to cope. I feel like I need to read it multiple times and refer to different parts in order to integrate all the information contained in it.
    I do feel that I can gain a lot if I'm able to follow the philosophies that are quiet well described in a way that is practical to our situations.
    I want to thank you for writing this book and recommend it to all who suffer from chronic illness.
    I pray for your recovery as well as all who suffer from this painful, lonely, misunderstood illness.
     
  6. Wayne

    Wayne Senior Member

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    How To Be Sick by Toni Bernhard

    Hi Toni,

    Nice to see you here. I just checked out your website, and came across your youtube video, which I feel certain I'll be recommending to friends and acquaintances. It strikes me, and I would assume many others, as very authentic and credible.

    About How To Be Sick

    I haven't perused you website or writings extensively, but from your video, it seems the operative word regarding how to be sick might be "creativity". Would that be accurate? Don't want to apply words the author might not agree with. :angel::Retro smile:

    I'm a bit curious, do you consider yourself to have ME or CFS or ME/CFS, or perhaps post-viral syndrome? In my brief time on your website and video, I don't remember your mentioning any of the above descriptions for your own chronic illness.

    Best Regards, Wayne


     
  7. Wayne

    Wayne Senior Member

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    Hi NeilK,

    I think passive is a word that describes pretty well some of the eastern philosophies and religions, including the meditation techniques they use. I've tried mediation in the past, and found it didn't work particularly well for me, the likely reason being that it contrasts with the (my) western orientation of being more active.

    To me, passive implies a certain level of acceptance. I don't consider this necessarily bad, and probably has its place when dealing with the marathon of life with chronic illness. To me, being active implies more of a direct interaction with the "creative principle" in our daily lives.

    Toni, I would have thought a Buddhist orientation would be more passive than the one you seem to have adopted. Perhaps I'll find some time to peruse your website further to get a better sense for Buddhist philosophy. I consider myself somewhat relentless in pursuing better health, but I also try to do it in a way that does not involve "unbalanced" pushing. Plus, I always give myself considerably lea way in taking breaks as necessary. Seems there's cycles to everything; times to go forward (active?), times to consolidate (more passive or acceptance?)

    Speaking of breaks, time to go to bed! :D

    Best Regards, Wayne
     
  8. bernhard11

    bernhard11

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    Hi Wayne,

    Buddhist explicitly is not passive. In fact, each of the four sublime emotions has what's called the "near enemy" which we can mistake for the sublime emotion itself (the four emotions are: loving-kindness, compassion, joy in other's joy, and equanimity -- there's a chapter in my book on each of them). The "near enemy" of equanimity (which can also thought of as "acceptance") is indifference. Acceptance is not the same, then, as indifference. Indifference implies an aversion to how things are: "This is how things are...and so what." That's the kind of attitude that leads to passivity because it makes you feel that you have no power to affect your life at all.

    I know it's common for people to think that Buddhism is passive but it's a misunderstanding of its teachings!

    My best to you,
    Toni
     
  9. bernhard11

    bernhard11

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    Hi Wayne,

    I think it's important to be creative when you're stuck mostly at home as I am. I like to call it "thinking outside the box." So, for example, I can't travel, but I can "virtual travel" on the web. I like your idea of creativity!

    I'm glad you liked the video. My husband filmed it and my daughter put it all together, using the video, still photos, and well, creativity!

    I've been diagnosed with Chronic Fatigue Syndrome because that's what the doctors I see happen to call it. They don't ever use the term ME. There's a lot of controversy over the diagnoses: CFS, ME, ME/CFS. I don't always understand the distinctions people are making about them. It's just more proof that we so badly need research money to get to the bottom of why we are sick. I've just started a blog at Psychology Today and will be writing about CFS, ME, etc. from time to time. (You may have seen the button link on my website).

    Thanks for taking the time to look at the video and for sharing it.

    Warmly,
    Toni
     
  10. bernhard11

    bernhard11

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    Nielk - I'm so glad that you continued to find the book helpful! You say you'll need to read it multiple times. I just wanted you to know that I still read it! I get it out to find just the right practice for the difficulty I'm facing. I've been getting such wonderful feedback from people, no matter what their chronic illness is (and even from those who aren't ill!). It makes me feel that all the hard work and toll it took on my health was worth it. Take good care of yourself. Toni
     
  11. KC22

    KC22 Senior Member

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    Toni,

    This book came to me via a Buddhist friend who was reading it and thought it described my illness. I have it and have read much of it, but not all of it yet. I saw myself in all of the book, even descsribing how your husband is social and you can sometimes visit with friends and other times not.

    I have also found some people misinterpret the word "acceptance" as not doing anything. On the contrary, we are accepting what is in the moment while looking and trying treatments. This illness has taught me the new understanding of the word acceptance. This can apply to all of our life, not just are illness. My husband died in an accident last summer, and I am applying these tools I have learned from CFS.

    Your book was excellent and validated all the emotions and lessons we have learned from this disease.

    Thanks for writing it!!!
     
  12. Nielk

    Nielk

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    husband left to work
    tree branches shaking back and forth on my front lawn
    I'm in bed alone with my thoughts

    the sun goes up, the sun sets
    children grow up
    I'm iwith my pain

    wind is blowing outside
    I'm indoors
    yet, wind is in my head

    so much to do
    so much to accomplish
    it will have to wait - i'm in bed with my pain, with wind in my head.
     
  13. Nielk

    Nielk

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    My attempt at Haiku is pretty pathetic.
    I posted this yesterday - in the midst of a horrible headache - ear problem and now that I read it, it makes no sense to me.
     
  14. Ocean

    Ocean Senior Member

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    Neilk, I liked your poem. It makes sense to me! Maybe not what you intended it to mean, but I found meaning in it. Creativity is one of my few outlets in dealing with this illness. Unfortunately I rarely have enough energy and wellbeing these days to summon any creative energy. But when it does come it feels great. And its great to see other people dealing with it through creativity too. Art shared helps everyone, not just the person creating it. I guess maybe that holds true for most things shared actually.
     

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