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Thursday, October 30, 2014


I have written a bit about how pain and suffering don't necessarily go hand in hand.  In fact, they are two different things all together in my experience.   This is an interesting article that although doesn't specifically mention pain and suffering, does show the mind/body connection.  Great read.  And I don't minimize the pain...far from it.  But I also practice ways to make it less painful, and if I really pay attention to my intention, it works.  The drumming, the meditation, the acupuncture, essential oils (but most of all the shamanic journeying by listening to drumming)....anything to get me out of my head!!

Saturday, October 25, 2014


That book I’ve been reading “Beyond the Ashes” continues to amaze.  One of the things the author discusses is “Survival through one’s Descendants” and how (in its teachings) if you don’t have a descendant, you die both literally and spiritually.  This is considered a “bad” thing, a liking to spiritual suicide.   But I chose not to have kids because of my NF, and although I know it’s a book on spirituality and should not be taken literally, it got a smile out of me.  I do not want to come back, as I’ve stated again and again.  And again.  LOL.  Each to his own, I guess.

Anyway, it occurred to me that perhaps the reason I am experiencing such spikes in pain and such feelings of ending my life or just praying that it be so, that those feelings are profoundly ungrateful for the life that I DO have.  And there is plenty to be grateful for.  So I’m working on that.  All the time.  And the amazing thing?  The MINUTE that thought popped into my head, the pain seemed to drain a bit.  I actually felt my legs letting go of the pain.  I must keep working at it, of course, but it’s just one more tool in my toolbox of ways to survive.  An attitude of gratitude is hard to maintain sometimes, especially when the pain is off the flow chart.

At any rate, I am thankful for the following (no particular order; just as they pop in my head) and whether or not I still have/can do them:

A roof over my head, food in my belly (when I eat), access to medication, friends, family, heat in the winter, disability benefits, people to help me during the week, Internet access, books from the library, my blog, people I’ve met online who also deal with pain, people online who have NF, having had my dad for 61 years (my lifetime…he lived to 90) having had the chance to mend my relationship with him years ago, my helpers on the other side who have been surrounding me with a lot of love since my dad died (and who are always there when I call for them), having access to a healer/acupuncturist who has made my life a lot easier, a wonderful therapist, a beautiful view out my window and balcony, hummingbirds who I watch enjoy the sugar water I make for them,  I’m thankful for the stars in the sky (even though I no longer see them…I know they are there), the sun, the plants and animals (which I can no longer have, but love dearly), dark chocolate, books, books and more books, a good spooky movie, a good comedy, all the places I was able to visit before my illness took over, the wild times I had back then, the men I loved, the ones who may have even loved me, the wonderful people who have stood by me all this time, my ears, my ears, my legs that can still walk in spite of the pain and the numbness, hands and fingers which still work, though not as well but hey, they work, ginger cookies, shortbread cookie with chocolate on top, funny stories told by friends around good food, same for family, looking up and suddenly seen something surprising….like soap bubbles floating up from somewhere secret, my laptop which gives me access to the world, smells I can still smell and enjoy, sights I see through photographs, old photographs of my extended family especially in black and white, hand-holding, back washing, swing-sets and monkey bars, ice-cream, sour candy, jig-saw puzzles, Halloween, prayers of thanks, any/all prayers, faith, emails and surprise visits from family and friends, essential oils, ordering things online so I don’t have to go anywhere to get it, pharmacy delivery (new!!!),  snowcapped mountains, thunderstorms, rainbows, honey crisp apples, an appetite, flying dreams (and others), singing to myself, songs from the 50’s and 60’s, my mother singing 50’s songs to me when I was a kid, eyelash kisses, dark chocolate ice cream bars, National Geographic photos, catching the anger before the outburst (and stopping it), leftovers, ripe pomegranates, cupcakes with buttercream frosting,  cherry lollipops, cats and dogs, eaglets and eagles, actually, all animals on the planet, all the wonders of the world (including reproduction of all species), rare days of being pain-free, videos of animals, hearing about the travel of friends, getting in touch with my higher self and being able to reduce my own pain, my spirit guides, G-d, G-d and G-d….my list will continue, though not here.   I urge you to make your own!

Tuesday, October 21, 2014


I saw the surgeon I’ve been waiting to see today.  He was running two hours behind but I was lying in the exam room so it wasn’t that bad….usual pain levels.  And he asked pain questions no one has ever asked me.  Like do I curl up in a ball, do I cry, etc.   I thought those were important questions.  He also has had many NF patients and I saw two in the waiting room so I know that’s accurate.  And a nurse and another doc talked to me as well, assuring me he is good and knows about NF.  Whew.

So he felt the tumors on my left leg, left side of my neck and left wrist.  He said he can get them all out (felt them and said they were near the surface) but he’s a busy guy and it will be a few months. It will be about a two and a half hour surgery.  He said recovery varies, and my sister was with me taking notes and asking questions, worried that I live alone and how hard would it be? Gotta love her!!!

I have mixed feelings….I want to do it, absolutely, but I am worried about recovery as well.  Stay tuned.

Monday, October 20, 2014


I still feel you all around me; counseling, loving, sharing sage wisdom learned in the World to Come.  I am in increased pain and my left ear has started to bother me relentlessly.  Before, it would come and go.  Now it has planted roots, like the rest of the tumors.  I feel helpless to the invasion and when I let it, I worry about that which is not in my control. But what I seldom feel anymore is fear.  I am taken at how much at peace I feel through the pain.  Am I truly surrendering?  And is surrendering the same as giving up?  Throwing in the towel, as it were?

More and more: memories are starting to surface.  Things done several years ago; like being able to go out for a bite to eat with family, or memories from many years ago, with friend whom I don’t even know are a live anymore.  They come in flashes with a sign that reads “don’t forget this or that”   I won’t. I promise.  I miss it.  I miss it all.  I still wonder where old loves turned up.  Like Michael Neal, whom I never managed to find.  But his name is common.  And I doubt I ever crossed his mind in the 30 (gasp) years since I saw him leave town with a pregnant girlfriend he neglected to tell he had.  We were young.  He was truly confused.  And much to my chagrin, I actually liked Joy.   He knew I was sick and he was perhaps the ONLY man I had met where it didn’t seem to matter to him.  And poof, he was gone.

What would I have done differently if I could have a do over?  I’d be braver. I’d push through the learning disabilities, the physical challenges and romantic shutdown.  I do believe I reincarnated too damn soon after the Holocaust; and yes, I’ve had a spontaneous past life experience of dying the gas chamber.  Completely spontaneous; no recent thoughts of the Holocaust.  And two other past life experiences not related to it.   But those were much earlier. This was the forties, early fifties.  That world always had a draw on me.

Oh, and I’m working hard on appreciation.   I’m keeping a list of things that I’m grateful for.  It’s long, and continuing to grow.  I seem to be able to tolerate the pain better when doing this.  Huh.

Sunday, October 12, 2014


I’ve had at least three spontaneous experiences which may or may not have been “past life” memories.  I’ve written about them on this blog.  So every once in a while I pick up a book about the subject and try to tackle it again.  Right now I’m reading “Beyond the Ashes” which is an accounting (in part) about people, mostly non-Jewish, who have had unexplainable memories of the Holocaust.  Not the kind of things everyone knows about from books and movies, but very specific and verifiable experiences which are hard to explain.  I myself had one that scared the pants off of me but sealed it away for years before I talked about it.

At any rate, I bring it up because I have been tackling the idea that we keep incarnating the same kind of problems over and over again (especially if we don’t resolve them).  One thought about the Holocaust reincarnates is that they came back too soon (a therapist told me that years ago and it felt accurate), before the soul had a chance to let go of what they just went through in their most recent life; especially because the life was one of such horrific challenge.  The world today ALMOST pales the Holocaust; and what was done to people (not just Jews; Gypsy’s, homosexuals, etc.) in the way of torture is beyond imagining.
So I’m thinking, if I was in fact killed in the Holocaust, I sure feel like I came back way,, way too fast (which is discussed in the book) and that that might account (in part) for my anger of being here now and my dread of possibly having to come back again after my death this time,   And then there’s the fear of how much longer I end up living in pain and fear of how bad it’s going to get before I’m done.  Whew.  Take a pill, right?  And what if I can’t hack it anymore?  Will I be punished and forced to do a do over? 

Anyway, I started to think I brought NF (or my soul chose it) in with me because I haven’t reconciled all the pain and torture I endured.   Crazy?  Maybe.   But we don’t know what we don’t know; we just cling to our ideology because we are so desperate to make sense of the senseless.  I have a lot of time to ponder these questions.  They aren’t meant to be morose.  I just like to untangle the knots in life’s tapestry.  It helps.
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