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Buddhism & CFS

Discussion in 'Spirituality and ME/CFS' started by starryeyes, Dec 7, 2009.

  1. Dr. Yes

    Dr. Yes Shame on You

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    Meditation, Malfunctions and ME

    Didn't get a chance to catch up on this thread until now; had a doc appointment (or as I call 'em, dis-appointments!) right after not being able to sleep a wink in over 24 hours; had the worst overall physical symptoms I've had in several months... Slightly better now after a nap, and ought to sleep but I'm so intrigued by the meditation discussion going on here..so please to forgive my humble brain aha yes and with most miserable apologies, yes please...:p

    All of you have written so beautifully and insightfully about meditation...I don't think I've ever read anything as descriptive of the stream-of-consciousness preceding and interfering with initiating meditation. Koan, your posts here are all fantastic! They're so helpful, and all written with the lilting grace that you always seem to bring, matching the flow of breath and thought you describe. (And I really like the puppy thing, too. It's such a gentle way to conceive of mental discipline: lovingly, in a non-stressful way.)

    teejkay, your last post brought me right back to the issue that first hooked me on this thread, when in the first entry you discussed the difficulty you had with self-aware meditation because of ME/CFS cog. problems.... That's been the most difficult thing for me as well, and the possible significance of that has been the most frightening (e.g. 'what's wrong with my mind?' or 'will I ever get back my connection to my...self?') When I read parts of Ken Wilber's guided meditation, I could actually sense some of that confusion and fear.

    When cognitive effects are bad do you ever experience anything like a disconnected, surreal feeling (what I suppose is similar to the shrink terms depersonalization, or derealization), a frightening feeling of being suddenly lost in an unfamiliar mental darkness without an anchor?...

    ...I've experienced that many times since my ME/CFS as a whole became suddenly worse in '95... it's the most disorienting cognitive symptom of them all. (In Verrillo and Gellman's "Chronic Fatigue Syndrome: A Treatment Guide" they mention reports of "sensory and perceptual alterations" that can cause "feelings of dissociation or a sense that they are watching themselves, as though in a movie"). That, and other elements of mental processing probs/"brain fog" can reach a high intensity, as if I suddenly "tuned into it", when I try to meditate or just self-contemplate in certain ways...especially as I become aware of my own thought process.

    That's a major reason for the difficulties meditating that I mentioned in my first post here, and also why I can now only attempt to meditate by focusing away from myself entirely. So, strangely, both highly body-conscious techniques and the "I am not my body" form of meditation seem to get disrupted. I don't know quite what to make of it, except that somehow (for me at least) the disease interferes with the 'self-monitoring' pathway of consciousness, sort of the "who am I?" or "who is the seer?" circuit. I can't tell whether it interferes by weakening this circuit or by making it hypervigilant, and hyper-aware in certain perceptions. Either way the focus on this 'circuit' that comes with both types of meditation seems to trigger this (disturbing) response.

    I can only hope that continuing to try what ever techniques seem to work will somehow allow me 'proper access' to deeper meditation, and (even more hopefully) somehow restore proper cognitive functioning in this area. (This is sounding more and more neurological and less spiritual by the second, huh? That's another sad thing... ME/CFS has such pronounced physical effects that it's hard to think of the "self" in a non-physical, non-material way; it feels more like hardware malfunctioning than, say, a misdirection of spiritual energy.)

    Does any of this sound sort of similar to stuff anyone else has experienced? I'd really like to know if I'm not entirely alone in this. I've learned to tolerate it much more, but it's still a terrible thing to bear.

    Anyway, that's why I think approaches like this one from Koan may be very helpful to me in the future: "My meditation has not addressed my cognitive issues in any way that restores function but my reaction to my cognitive problems, which are mighty, is curiousity rather than alarm."

    Also, this from dreambirdie: "I think the irony is that the more WILLINGLY I accept the chaos/fear/pain in my mind, the more peaceful I feel."

    Thank you all so much for this. Hope what I wrote is actually coherent; like I said I've had only a few hours of sleep in about two days now..:confused:

    And thanks especially to you, teejkay, for opening a conversation I never thought I'd get to have.
  2. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    18
    Meditation, Malfunctions and ME

    Didn't get a chance to catch up on this thread until now; had a doc appointment (or as I call 'em, dis-appointments!) right after not being able to sleep a wink in over 24 hours; had the worst overall physical symptoms I've had in several months... Slightly better now after a nap, and ought to sleep but I'm so intrigued by the meditation discussion going on here..so please to forgive my humble brain aha yes and with most miserable apologies, yes please...:p

    All of you have written so beautifully and insightfully about meditation...I don't think I've ever read anything as descriptive of the stream-of-consciousness preceding and interfering with initiating meditation. Koan, your posts here are all fantastic! They're so helpful, and all written with the lilting grace that you always seem to bring, matching the flow of breath and thought you describe. (And I really like the puppy thing, too. It's such a gentle way to conceive of mental discipline: lovingly, in a non-stressful way.)

    teejkay, your last post brought me right back to the issue that first hooked me on this thread, when in the first entry you discussed the difficulty you had with self-aware meditation because of ME/CFS cog. problems.... That's been the most difficult thing for me as well, and the possible significance of that has been the most frightening (e.g. 'what's wrong with my mind?' or 'will I ever get back my connection to my...self?') When I read parts of Ken Wilber's guided meditation, I could actually sense some of that confusion and fear.

    When cognitive effects are bad do you ever experience anything like a disconnected, surreal feeling (what I suppose is similar to the shrink terms depersonalization, or derealization), a frightening feeling of being suddenly lost in an unfamiliar mental darkness without an anchor?...

    ...I've experienced that many times since my ME/CFS as a whole became suddenly worse in '95... it's the most disorienting cognitive symptom of them all. (In Verrillo and Gellman's "Chronic Fatigue Syndrome: A Treatment Guide" they mention reports of "sensory and perceptual alterations" that can cause "feelings of dissociation or a sense that they are watching themselves, as though in a movie"). That, and other elements of mental processing probs/"brain fog" can reach a high intensity, as if I suddenly "tuned into it", when I try to meditate or just self-contemplate in certain ways...especially as I become aware of my own thought process.

    That's a major reason for the difficulties meditating that I mentioned in my first post here, and also why I can now only attempt to meditate by focusing away from myself entirely. So, strangely, both highly body-conscious techniques and the "I am not my body" form of meditation seem to get disrupted. I don't know quite what to make of it, except that somehow (for me at least) the disease interferes with the 'self-monitoring' pathway of consciousness, sort of the "who am I?" or "who is the seer?" circuit. I can't tell whether it interferes by weakening this circuit or by making it hypervigilant, and hyper-aware in certain perceptions. Either way the focus on this 'circuit' that comes with both types of meditation seems to trigger this (disturbing) response.

    I can only hope that continuing to try what ever techniques seem to work will somehow allow me 'proper access' to deeper meditation, and (even more hopefully) somehow restore proper cognitive functioning in this area. (This is sounding more and more neurological and less spiritual by the second, huh? That's another sad thing... ME/CFS has such pronounced physical effects that it's hard to think of the "self" in a non-physical, non-material way; it feels more like hardware malfunctioning than, say, a misdirection of spiritual energy.)

    Does any of this sound sort of similar to stuff anyone else has experienced? I'd really like to know if I'm not entirely alone in this. I've learned to tolerate it much more, but it's still a terrible thing to bear.

    Anyway, that's why I think approaches like this one from Koan may be very helpful to me in the future: "My meditation has not addressed my cognitive issues in any way that restores function but my reaction to my cognitive problems, which are mighty, is curiousity rather than alarm."

    Also, this from dreambirdie: "I think the irony is that the more WILLINGLY I accept the chaos/fear/pain in my mind, the more peaceful I feel."

    Thank you all so much for this. Hope what I wrote is actually coherent; like I said I've had only a few hours of sleep in about two days now..:confused:

    And thanks especially to you, teejkay, for opening a conversation I never thought I'd get to have.
  3. starryeyes

    starryeyes Senior Member

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    Bay Area, California
    Hi Dr. Yes,

    It would be helpful to me if you could break your long paragraph into smaller ones-- major brainfog.

    I'm probably experiencing the same thing you are but I take it differently I think. I feel more like I'm dying a lot of the time and of course, that's frightening so that gets my adrenaline pumping. I'm in intractable pain most of the time and it can get very intense and I also get very sick suddenly.

    It's interesting that you sense confusion and fear from Ken Wilber's meditation on "I am not my body". I suppose that makes sense. To me, it is a huge relief. I take that as, as awful as all this is, it's not the real me. I find solace in that kind of meditation.

    What I can't do anymore is the kind of meditation where I focus on my body from my head to my toes and relax each part, or dissolve each part, or wash each part with rainbow energy and then end up in real deep meditation that leads to feelings of floating and bliss. This is because I am now physically suffering way too much.

    As far as meditating now, I usually do light meditation that's guided too. Unless I get better I don't see this changing. As you mentioned earlier in order to meditate deeply, one needs to be healthy first and I've read that too. I do well with someone talking me through a meditation like on tape or audio through the Web. Anything that takes me away from myself works just not as deeply and it doesn't last like my old practices did.

    I hope you can get some sleep soon. You and me both-- lol.
  4. starryeyes

    starryeyes Senior Member

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    Bay Area, California
    Hi Dr. Yes,

    It would be helpful to me if you could break your long paragraph into smaller ones-- major brainfog.

    I'm probably experiencing the same thing you are but I take it differently I think. I feel more like I'm dying a lot of the time and of course, that's frightening so that gets my adrenaline pumping. I'm in intractable pain most of the time and it can get very intense and I also get very sick suddenly.

    It's interesting that you sense confusion and fear from Ken Wilber's meditation on "I am not my body". I suppose that makes sense. To me, it is a huge relief. I take that as, as awful as all this is, it's not the real me. I find solace in that kind of meditation.

    What I can't do anymore is the kind of meditation where I focus on my body from my head to my toes and relax each part, or dissolve each part, or wash each part with rainbow energy and then end up in real deep meditation that leads to feelings of floating and bliss. This is because I am now physically suffering way too much.

    As far as meditating now, I usually do light meditation that's guided too. Unless I get better I don't see this changing. As you mentioned earlier in order to meditate deeply, one needs to be healthy first and I've read that too. I do well with someone talking me through a meditation like on tape or audio through the Web. Anything that takes me away from myself works just not as deeply and it doesn't last like my old practices did.

    I hope you can get some sleep soon. You and me both-- lol.
  5. fresh_eyes

    fresh_eyes happy to be here

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    mountains of north carolina
    Dr Yes, I've had this at times. Then I read a book by neurologist Oliver Sacks where he mentioned that a common feature of migraine aura is a sense of "wrongness" or "unreality," which can include a sort of existential dread. This was so reassuring to me, allowing me to regard it as simply another neurological symptom; it allowed me to examine these states when they arrive in myself with curiosity (what an amazing thing, this brain/mind we have!) rather than alarm, as Koan describes so well.

    On a separate but related note, the best meditation instruction I've ever received was from a teacher named Adyashanti (he's great by the way - www.adyashanti.org) - "Just let everything be exactly as it is." Surprisingly hard! But amazingly peaceful, when I can manage it even for a split second. (After all, what is, is, whether I let it be or not.)(Oh, he also has some strange mystery health problems. Hmm...)
  6. fresh_eyes

    fresh_eyes happy to be here

    Messages:
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    4
    mountains of north carolina
    Dr Yes, I've had this at times. Then I read a book by neurologist Oliver Sacks where he mentioned that a common feature of migraine aura is a sense of "wrongness" or "unreality," which can include a sort of existential dread. This was so reassuring to me, allowing me to regard it as simply another neurological symptom; it allowed me to examine these states when they arrive in myself with curiosity (what an amazing thing, this brain/mind we have!) rather than alarm, as Koan describes so well.

    On a separate but related note, the best meditation instruction I've ever received was from a teacher named Adyashanti (he's great by the way - www.adyashanti.org) - "Just let everything be exactly as it is." Surprisingly hard! But amazingly peaceful, when I can manage it even for a split second. (After all, what is, is, whether I let it be or not.)(Oh, he also has some strange mystery health problems. Hmm...)
  7. starryeyes

    starryeyes Senior Member

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    Bay Area, California
    gracenote -- I just reread what you wrote about feeling erased. Each time I read through this thread I get different things from it. I realized as I read about you needing to establish your own identity that Ken's meditation on not being your body would really not work well with that.

    As Koan and others have pointed out there are many different paths and the reason for that is because we all have different needs. And this helps me realize that it's normal that what worked for me in the past no longer does because I have changed so much. In this case my health has changed so much that I need new paths.

    Dr. Yes-- thanks for breaking up that paragraph. :) I realized something else just now. Thich Nhat Hanh teaches us to be mindful and to become aware of ourselves. I like the mindfulness as long as it's not directed on myself anymore. I can tune into my breathing and that usually helps me but becoming more aware of how I feel makes me feel much worse now. Years ago it made me feel so good. That's one of the things I really miss.

    fresh_eyes-- I am working on accepting the way everything is. Sometimes I succeed. lol
  8. starryeyes

    starryeyes Senior Member

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    Bay Area, California
    gracenote -- I just reread what you wrote about feeling erased. Each time I read through this thread I get different things from it. I realized as I read about you needing to establish your own identity that Ken's meditation on not being your body would really not work well with that.

    As Koan and others have pointed out there are many different paths and the reason for that is because we all have different needs. And this helps me realize that it's normal that what worked for me in the past no longer does because I have changed so much. In this case my health has changed so much that I need new paths.

    Dr. Yes-- thanks for breaking up that paragraph. :) I realized something else just now. Thich Nhat Hanh teaches us to be mindful and to become aware of ourselves. I like the mindfulness as long as it's not directed on myself anymore. I can tune into my breathing and that usually helps me but becoming more aware of how I feel makes me feel much worse now. Years ago it made me feel so good. That's one of the things I really miss.

    fresh_eyes-- I am working on accepting the way everything is. Sometimes I succeed. lol
  9. Koan

    Koan Be the change.

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    Hi Brenda,
    Thank you for sharing your beliefs. Yes, that was the labrynth of which I spoke. Many find walking a labrynth very peaceful. I don't know anyone who enters an altered state of consciousness but that's someting interesting to consider. I don't enter an altered state of consciousness when I meditate.

    Anyway, you seem to have a path that suits you very well and which brings you the kind of peace and support you need on this journey through life. That's wonderful!

    Oh Tee,
    I am so grateful not to be in intractable pain. I am so sorry that you are. I have no idea what that's like and I hope I never find out.

    I marvel at your lively spirit and your good nature as I have always known it to be. I am in awe of your enormous courage and can't imagine that it will ever be defeated. I wish harder for a cure for you than for myself. I have a much easier time.

    Dear Dr.Yes,

    Yes, oh Yes, oh Yes. When I was 18, 9 years before what I consider the triggering illness, but maybe things were already under way, I had my first episode of this. I thought I had gone mad and been plunged into an existential hell. It continued to plague me for years to come.

    I developed huge anxiety around these episodes and many phobias - really had a hard time tolerating any situation from which I could not escape if this were to happen. I also became afraid to be too far away from the safety of home and could only do so with great difficulty. I hid it as best I could but felt a great deal of fear and shame.

    I was diagnosed with panic disorder. I said, repeatedly, that I thought they were "like seizures". (It's funny how we can intuit these things.)

    A few months after the trigger was pulled, I developed a pupil abnormality for which I had an EEG and the neuro said there was activity which could indicate temporal lobe epilepsy. He gave me a textbook open to the relevant page. I read a lot of highly unflattering things about people with TLE, decided I didn't want temporal lobe epilepsy, closed the book, gave it back, thanked him, left and tried to put all that unpleasantness out of my mind! (hahaha... hahahahaha... oh dear.)

    Also, after the trigger was pulled, these attacks, which had been getting much milder over the years, came on with a vengeance. They would hit several times a day, out of the clear blue, and go on and on and on shaking me to my marrow. It was difficult for me even to be alone. (OMG, that was awful!) It coincided with my efforts to exercise myself back to health ( :eek: ) while cutting out dairy = making myself a lactic acid factory! :eek:

    A few years later, I discovered Xanax which completely blocks this feeling. Taken 3x a day it will prevent it; dissolved under the tongue when one is enduring it, it stops it in less than 20 min. Thus began a new chapter in my life.

    I tell you the long version of this story to say that I completely understand not wanting to throw the switch on this experience in any way. Meditation does not throw the switch for me. I can't know, of course, if the small amount of Xanax I take at night keeps my brain from misfiring in this way during the day or if it's just calmed down, or... or...

    FreshEyes,

    I think you have hit the proverbial nail right on the proverbial head. It's awful, isn't it. The existential dread is the worst! Thank you for sharing this and I absolutely love your take on it!

    Many of us, as we all know, have found benzo.s helpful. Among the online community there is widespread support for the use of Alprazolam (Xanax), in particular, in this illness. I feel it is because it addresses whatever wiring problem we share which can cause this most alarming symptom.

    I don't think I would be able to meditate very well if I were having any kind of seizure during meditation. As Dr Yes wrote earlier in this thread, it is good to meditate with as healthy a brain and body as one can.

    Thank you FreshEyes for this very reassuring info from Oliver Sacks and thank you for sharing your knowledge of this horror. And, thank you so much for letting us know that it is possible to accept this feeling with the same curious non-attachment with which we accept other things. I have often wondered if my, sometimes shaky, ability to do this was all about Xanax or if I was actually working the Dharma. Thank you, thank you, thank you!

    DrYes, you are so not alone! And, of course, it's not just those of us who have posted here. There are others and they will be so relieved and reassured (goosebumps are washing over me!) by your sharing of this horrible symptom.

    Thank you DrYes!
  10. Koan

    Koan Be the change.

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    Hi Brenda,
    Thank you for sharing your beliefs. Yes, that was the labrynth of which I spoke. Many find walking a labrynth very peaceful. I don't know anyone who enters an altered state of consciousness but that's someting interesting to consider. I don't enter an altered state of consciousness when I meditate.

    Anyway, you seem to have a path that suits you very well and which brings you the kind of peace and support you need on this journey through life. That's wonderful!

    Oh Tee,
    I am so grateful not to be in intractable pain. I am so sorry that you are. I have no idea what that's like and I hope I never find out.

    I marvel at your lively spirit and your good nature as I have always known it to be. I am in awe of your enormous courage and can't imagine that it will ever be defeated. I wish harder for a cure for you than for myself. I have a much easier time.

    Dear Dr.Yes,

    Yes, oh Yes, oh Yes. When I was 18, 9 years before what I consider the triggering illness, but maybe things were already under way, I had my first episode of this. I thought I had gone mad and been plunged into an existential hell. It continued to plague me for years to come.

    I developed huge anxiety around these episodes and many phobias - really had a hard time tolerating any situation from which I could not escape if this were to happen. I also became afraid to be too far away from the safety of home and could only do so with great difficulty. I hid it as best I could but felt a great deal of fear and shame.

    I was diagnosed with panic disorder. I said, repeatedly, that I thought they were "like seizures". (It's funny how we can intuit these things.)

    A few months after the trigger was pulled, I developed a pupil abnormality for which I had an EEG and the neuro said there was activity which could indicate temporal lobe epilepsy. He gave me a textbook open to the relevant page. I read a lot of highly unflattering things about people with TLE, decided I didn't want temporal lobe epilepsy, closed the book, gave it back, thanked him, left and tried to put all that unpleasantness out of my mind! (hahaha... hahahahaha... oh dear.)

    Also, after the trigger was pulled, these attacks, which had been getting much milder over the years, came on with a vengeance. They would hit several times a day, out of the clear blue, and go on and on and on shaking me to my marrow. It was difficult for me even to be alone. (OMG, that was awful!) It coincided with my efforts to exercise myself back to health ( :eek: ) while cutting out dairy = making myself a lactic acid factory! :eek:

    A few years later, I discovered Xanax which completely blocks this feeling. Taken 3x a day it will prevent it; dissolved under the tongue when one is enduring it, it stops it in less than 20 min. Thus began a new chapter in my life.

    I tell you the long version of this story to say that I completely understand not wanting to throw the switch on this experience in any way. Meditation does not throw the switch for me. I can't know, of course, if the small amount of Xanax I take at night keeps my brain from misfiring in this way during the day or if it's just calmed down, or... or...

    FreshEyes,

    I think you have hit the proverbial nail right on the proverbial head. It's awful, isn't it. The existential dread is the worst! Thank you for sharing this and I absolutely love your take on it!

    Many of us, as we all know, have found benzo.s helpful. Among the online community there is widespread support for the use of Alprazolam (Xanax), in particular, in this illness. I feel it is because it addresses whatever wiring problem we share which can cause this most alarming symptom.

    I don't think I would be able to meditate very well if I were having any kind of seizure during meditation. As Dr Yes wrote earlier in this thread, it is good to meditate with as healthy a brain and body as one can.

    Thank you FreshEyes for this very reassuring info from Oliver Sacks and thank you for sharing your knowledge of this horror. And, thank you so much for letting us know that it is possible to accept this feeling with the same curious non-attachment with which we accept other things. I have often wondered if my, sometimes shaky, ability to do this was all about Xanax or if I was actually working the Dharma. Thank you, thank you, thank you!

    DrYes, you are so not alone! And, of course, it's not just those of us who have posted here. There are others and they will be so relieved and reassured (goosebumps are washing over me!) by your sharing of this horrible symptom.

    Thank you DrYes!
  11. Koan

    Koan Be the change.

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    This is brill.! May I use? I will give you "dia-guess" in exchange.

    :D

    I'm sorry you haven't been sleeping :(
  12. Koan

    Koan Be the change.

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    This is brill.! May I use? I will give you "dia-guess" in exchange.

    :D

    I'm sorry you haven't been sleeping :(
  13. Koan

    Koan Be the change.

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    Amen, sister!
  14. Koan

    Koan Be the change.

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    Amen, sister!
  15. Koan

    Koan Be the change.

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    Thanks much for this, Brenda! I love what was said about the purpose of the labrynth:

    With a labyrinth there is only one choice to be made. The choice is to enter or not. A more passive, receptive mindset is needed. The choice is whether or not to walk a spiritual path.

    I think that's beautiful!
    peace to you,
    k
  16. Koan

    Koan Be the change.

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    Thanks much for this, Brenda! I love what was said about the purpose of the labrynth:

    With a labyrinth there is only one choice to be made. The choice is to enter or not. A more passive, receptive mindset is needed. The choice is whether or not to walk a spiritual path.

    I think that's beautiful!
    peace to you,
    k
  17. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    I copied this from the Community Lounge (don't let them know!) because I thought it was such a great thread and fit so well in this category. :cool:
  18. Koan

    Koan Be the change.

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    Where am I?! :eek:

    Corty, you scamp!

    :D
  19. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    double goodness

    Am I seeing double? Are there now TWO threads of Buddhism and CFS? I'm not complaining more is good, it's all good but am wondering which thread to post to. Or maybe to both? Do postings on one thread show up on the other? Will be happy to follow both and see where they lead. Or maybe I'll do a Frost . . .
    Two roads diverged in a wood, and I
    I took the one less traveled by,
    And that has made all the difference.

    :)
  20. Koan

    Koan Be the change.

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    OH! This is a very good point, Gracenote. I, for one, don't want to miss anything!

    :D

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