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Sunday, December 13, 2015

Desired Destinies 2

This is a tad different then the first version.  Struggling a lot lately, but my friends from my blog and those who know me outside my blog, not to mention family, keep me on course.  Special thanks to Erin, Carolyn and Becky (and her beautiful daughter, Ashley)!


How many of us want the destinies given to us?  How many of us even know what that is?  We think we might know (It’s our destiny to be together/alone/this career, etc.) but do we really?  I’m not sure we ever find out because it changes, just like everything else.

And how many of us want everything we have?  I don’t mean having everything we want…..few of us do, and even those who think they have everything they want in a particular moment seldom sustain that feeling.  Because there is always more, always something new around each and every corner that we think we can’t live without.  Mostly, we still live.

But wanting everything we have….that’s the challenge.  Personally, I can tell you right off the bat that I don’t want NF (my disorder).   And I certainly don’t want everything that goes along with it; agonizing pain, dysfunctional digestive system, inoperable tumors, isolation due to the pain…..and on and on and on.  The things I actually want are few:  My friends, family, books, music, etc.  The rest, you can have.

And that might be the biggest mistake anyone can make...  Throwing away that which feels profoundly inconvenient, hurtful, useless and empty-feeling (so we think).   But the painful (no pun intended) truth is, my body doesn’t really know what is useless to me and I’m not sure my soul does either.  I haven’t a clue what I am supposed to be learning, but I’m learning something, that’s for sure.  Kindness, patience, understanding, empathy….these are all things I strive for not in spite of my condition but because of it.  And I fall short 90% of the time.  So I pick myself up, dust myself off and try again the next time whatever challenge presents itself.  I can hear the little voice whispering in my ear reminding me, but I often yell over it.  Make no mistake, it’s the quiet voice you should be listening to (unless it’s telling you something bad, but that’s another story).

 We can’t know much of anything when it comes to being here, living this life and seeing all the misery around us.   The good too, but it seems to me that as I age, the good things became more rare.  And I don’t mean because of illness and personal challenges.  I mean in general.  Perhaps it was always this way and the digital age just made it that more apparent.  We instantly know what happens halfway across the planet.  Once again, I’ve weaned myself off the news because it’s just too depressing to read and increases my pain dramatically.

As my need for more help grows, the letting go of control becomes crucial to surviving the lifestyle change. Accepting that I can do less and less is beyond challenging.  And the one thing that gets me through it all is acceptance.

I've posted this song before but I wanted to use it again....it's a lullaby written by one of the Frays for his nephew...but I hear G-d talking to me. 




Thursday, December 3, 2015

Word Salad

I’ve been struggling with words lately.  Or the lack of them thereof.  At least words that make sense to my drug infested brain (all of which I’d flush down the toilet in a heartbeat if not for this unbearable pain….I’m writing this part for any new readers who may not know of all the things I do in addition to just popping pills….and there are many.  Read other entries if interested).  I’ve been wanting to write another post, but all I have in my head is word salad.  Too much news again.  So let’s skip that, eh?

I have been having some stunning visual and audio experiences through meditation, dreams and prayer.  The pain has been stunning, the darkness of the short days difficult for me to get through (always has been) and generally, I’m just flat-out depressed.  The CBD doesn’t work so well anymore, I’m having trouble finding help over the holiday period (or the case manager having trouble finding a replacement for the two helpers who are taking a few weeks off) and the only happy creatures near me is the squirrel and his buddies, the sparrows and the hummingbirds.

My family has visited over the holiday as well as a good friend I met through this blog.  That was great.  Indian food as opposed to turkey.  Not a big turkey fan, though my sister brought over an awesome turkey sandwich from this incredible shop she goes to for such things along with a slice of chocolate cake that was beyond delicious.  Whew.  My brother and his family are off to Hawaii, my sister’s youngest is on her way home from a semester in Eastern Europe (and with all the unrest it was scary for those of us waiting for her to return) and her oldest is getting ready for 10 days in Haiti on a humanitarian trip; it’s what she wants to do.  Public health in faraway places.

My nephew (brother’s son) is still working his tail off to get Carbon Washington on the ballot (to lower emissions output) and their daughter is still trying to decide whether or not to pursue law.  So long as she’s on the right side of it (the law) I’m all for it!  Not that my opinion matters.  Man, I feel old, listening to their life stories at this point.


I’m listening to banging all around me because their having our windows all replaced with energy efficient ones.  It’s cold and rainy and the windows will be off most of the day tomorrow.  I’ve been watching them to the other ones; takes a long time.  I just cancelled my morning help because I will have to barricade myself in my bedroom so they can do the living room first (I will tell them that’s how they have to do it) and then switch in the afternoon so they can do the bedroom and I’ll have help here with me in the living room.  Yikes.   I may have to do a marijuana run.
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