Monday, July 4, 2011

Pema Chodron To The Rescue

A friend recently told me that Pema Chodron, the renowned Buddhist nun, writer and meditation teacher, has CFS.  As soon as I heard this I ran to the computer.  "This," I told myself, "is too good to be true.  I've been waiting all these years for someone with a real understanding of the illness to shed some light on the spiritual aspects of  life with CFS, and it turns out that this deeply wise woman is struggling with it herself.  If anybody can show me how to deal with CFS, Pema can."

Google did not disappoint.  It gave me a number of sources--interviews and biographical articles--that confirmed that Pema Chodron does indeed have CFS.  Furthermore, she was diagnosed the same year as I, 1994, and like me her symptoms had begun to appear gradually several years earlier (the more typical pattern for the illness is the sudden onset of symptoms).

From Pema herself, however, regarding CFS there were only some quotes from a letter that she wrote to a fellow sufferer.  This is what she says:
 The key to working with what is so deeply unwanted, is to let go of the ideas...about how we shouldn't be sick and what will happen to us if we remain sick. Somehow we have to respect the illness, welcome it, enter into it...we surrender and say, okay, what have you to teach me...about letting go of control, about slowing down...about tasting the full experience of a moment...the light, the sound, the quality of our mood, of our pain, the sight of dust or birds or nothing special...respecting all that. It's a kind of death, this illness, the best kind of death if we'll let it be. It's the death of old stuck patterns and opinions and habits and it makes way for something new to be born in us.
I must confess that I was disappointed.  Her words struck me as generic Buddhist advice on how to deal with life and its inevitable contretemps.

But then, as if on cue, I went into another relapse, a quite severe one that kept me essentially bed-ridden for three days.  In my thick mental fog, I tried to remember Pema's words, but all I could recall  was, "it's a kind of death, this illness...."

Gradually, however, something else came back to me--the part about "tasting the full experience of the moment."  In my case, the full experience of the moment had to do with a long list of things that I dearly wanted to do (pick peas, walk the dogs, redesign this blog, start a new clay piece, have lunch with a friend) but couldn't, and heavy feelings of the futility of undertaking any project, since I never know when I will be grounded by a relapse.

In the past, my strategy has been to try my best not to think about all the things that I need/want to be doing, and especially not to contemplate the feelings of futility and hopelesness about ever accomplishing anything of even the smallest significance.  This time, instead, I let myself feel it all, particularly the despairing part.  "I am feeling that it's no use starting another clay piece," I said to myself, "since I've been having such frequent relapses that it will probably take me forever to finish it."  And, when the next feeling arrived:  "Now I'm laughing bitterly at myself for even thinking of redesigning my blog, since I can't even manage to post regularly on it."  And then:  "Now I'm having that familiar dread of committing to anything, since I to have to beg off so often."

Well, it was a long three days, and I can't say that they were easy to live through.  But with Pema's words swirling through my brain, this time the bad feelings, instead of appearing as accurate perceptions of reality,  seemed discrete and detached from reality--as if they had quotation marks around them--and didn't overwhelm me so completely.

The relapse eventually faded, as I knew it would.  Sooner or later it will return, as it always does.  Better not attach to feeling better.  Better learn to respect the illness, as Pema advises.  Better let it become "the best kind of death," if there is such a thing.

All this has an oddly Catholic ring to me:  the value of resignation, the idea that pain is an aid to salvation.  Maybe those first twenty years of my life, spent in an atsmophere of beeswax and incense, are going to come in handy now, after all.  How the Sisters of the Immaculate Conception, the Sisters of Mercy, and the Benedictines who taught me from first grade through high school would chortle if they knew that it took a Buddhist nun to get me thinking this way again.

17 comments :

  1. It doesn't make me chortle at all, actually (speaking as a very young benedictine, at least an OblSB) You don't know how many b ooks on my shelves, or ones I've borrowed and given back well-read, have intertwined Benedictine and Eastern roots. Joan Chittister's reflections on the Rule are almost entirely drawn from Eastern Philosophy. Thich Nacht Hahn, whose name I have just butchered, features prominently on my oblate director's shelf (as does Thomas R Kelly, a Quaker philosopher).

    In response, though, the idea of CFS being "a kind of death" really strikes me, not that I have had CFS, but I have had a summer of crippling hypothyroidism. After getting properly treated and my hormone levels started to balance, it was like a resurrection, or at least coming out of a coma. The things I could see that I couldn't see when I was sick. The possibilities. The sun. My family. It was like coming back to life.

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  2. Clearly, I have some reading to do. Will check out Chittister on the Rule. And Merton.

    Yes, there is a lot of overlap in the symptoms of hypothyroidism and CFS. I was really feeling for you while you had it, and so glad when you found a remedy.

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  3. I just read an article that suggested that sometimes CFS is diagnosed when the real culprit is Lyme disease. I am assuming you were tested for Lyme disease long ago. Given you have been around so many animals; it's just a thought I wanted to share.

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  4. I'm glad the bad feelings didn't overwhelm you as much.

    And I just need to say - you post on your blog more regularly than most of us (almost any of us), so don't beat yourself up about that!

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  5. Thank you all. And no, alas, it is not Lyme, for which there are antibiotics.

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  6. It occurs to me that the need for resignation extends to those around you. I leave the subject of your children and spouse to you, but even as a friend it is hard to refrain from 'Have you tried this? Have you tried that?' I haven't found a way to accept that there is no solution. They also serve who only stand by and wring their hands...

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  7. Yes, you do indeed serve by standing by...don't know what I'd do without it. As I've said before, I am lucky.

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  8. I especially liked the turn of "I must confess that I was disappointed. Her words struck me as generic Buddhist advice on how to deal with life and its inevitable contretemps." I enjoy initial reactions. But a lovely post...

    And what Mali said. If you think you aren't posting regularly, dear god, what must you think of us?

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  9. Indigo, it's not so much that I feel that I MUST post, but that I would like to, and it saddens me when I can't.

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  10. (I'm posting this for Alison, who couldn't get it to post the regular way):

    I'm thinking more and more that you should read How to be Sick. It's the generic Buddhist advice on life & its contretemps, but with enough specificity that it's at least worth skimming. She gives lots of specific practices to try for various aspects of living with CFS (and, per Elizabeth's comment, for family members). Buy a copy, and if you can't stand it, send it to me and I'll pass it on to clients.

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  11. O.k., I will. And while I'm at it, I'll also read The Sound Of A Wild Snail Eating, which is about the same topic but, I gather, does a poetic take on it.

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  12. I have just come across this blog in a search to see what Pema has to say about CFS/ME (I have had the disease since 1983.) I would like to suggest that acceptance is not quite the same things as resignation. Acceptance sees and lets go of resistance to what is in this moment, whereas resignation tries to deal with the difficult challenges of unpredictability by holding on to the notion that this relapse or remission will pass- which is something we cannot know. Being with not knowing is truly what I have found to be a bigger challenge than even the periods of acute pain over the 30 years of this illness.

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  13. "Being with not knowing" IS the ultimate challenge. Thank you for reading, Oriah.

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  14. Have you seen this, Lali? http://mariashriver.com/blog/2015/08/why-spirit-is-everything-in-facing-illness-pain-or-aging-fail-again-fail-better-pema-chodron/

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  15. Thanks for the link, Martha. I had never seen Maria Shriver's blog before, and was surprised to learn that she has CFS.

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    1. I don't think Shriver does. I think Pema's post was meant to be inspirational to her readers. But after I read it, I thought it did a better job at being just that - inspirational. 😊

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  16. I grabbed mine and gave it to Kary, one of the three characters in Pride's Children. My purpose is entertainment, but there is a buried bit of learning how a character with CFS lives her life, what she believes it constrains her to (not being a good match for someone she falls in love with), and how the world treats people with the limitations the disease imposes.

    I am very happy with how it came out, deeply into the second volume of the PC trilogy, and I don't know how this book would have existed otherwise. I hope it's worth a whole life - it will have taken me 20 years and half a million words to put this story together.

    Let me know if you would like a review copy (you said you liked long books) - check the Look Inside on Amazon if you want a sample; I have a lifetime of good reading behind me, and I hope it shows.

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