Who is This? and What’s Really Going On? Some Efforts to Tell the Complex Truth of my Unfolding Self Experience   2 comments

I prefer to speculate about transformation and recombination, using my favorite body part, my imagination.  But other aspects of my experience insist on intruding forcefully.  The other day, I had a bad experience with the Foley catheter I use because getting up and down constantly to pee with my lymphedema-bloated legs is very problematic.

Mostly, living with the catheter is just one of the countless things one accommodates to.   But on this particular day, unusual circumstances altered the routine, with the consequence that, unbeknownst to me or my caregiver, the hose of the catheter that drains the pee into an external pouch got doubled under me.  It takes a lot of doing, more than 15 pillows carefuly arranged just so, this one here and that one there, each with its name and place (Phyllis and Marie, Bertolucci, Dotty, Howie, Naoko, Michiko, Tadashi, the two Goldie Lockses, etc.), at least twenty minutes worth, at the end of a long and arduous daily treatment process, to get me settled.  Reyna and I both wanted to be done with it already, so I (later realized that I had) suppressed awareness that all was not well.  As Reyna prepared to leave, I began to have spasms — these are like neg-orgasms, in the same region as orgasms, but sensation that is extremely NOT desired.  The yelling these spasms induce is analogous to the outcries famously associated with orgasm itself.

So here I am in my bed with Reyna about to leave after more than five hours, yelling my head off.  With the balcony door open and everyone able to hear.  I’m yelling because I’m in extreme pain but what I think to myself, insofar as there is any thinking at all, is that I have to stop yelling!  STOP YELLING, JUDY!!!  Finally, it is not me but Reyna, who has tears streaming down her face in response to my pain, who starts pulling all the pillows, etc., apart, to discover that, yes, the tube is doubled under me so that the pee can’t get out but is being forced back up into my bladder…. Once she undoes the bed arrangement and is able to unkink the tube, the problem is soon resolved and my parts that felt as if I were being electrocuted calm down.  And then I am stunned at how unfaithful a friend to myself I had been, ignoring the intense pain, definitely 10 on the famous scale of 1-10, because it wasn’t convenient!  Reyna had already been here the full amount of time allotted and I myself didn’t feel like going through all the arrangements again.  Wanted to get on with the day, the part of the day that is “mine,” not lymphedema’s,  when I get to be my mental and social self.  Telling myself the problem was that I couldn’t stop yelling!  Could hardly feel the pain because I so deeply disapproved of my yelling.  Yi yi yi!

I’ve been studying lovingkindness practice, which starts with oneself.  All of oneself.  Bile, blood, bones, bone marrow, and connective tissue, etc.  All those necessary but, I have come to feel, as a result of so much prior conditioning, boring and lesser aspects of my joodyness.  I want to but it’s hard, at this late date, to turn around and acknowledge and give due attention to the co-inhabitants of this fathom-long bag of “flesh.”

Much, much work to be dome in this arena.  I welcome your help.


2 responses to “Who is This? and What’s Really Going On? Some Efforts to Tell the Complex Truth of my Unfolding Self Experience

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  1. Someday, you’ll have to write about your pillows and their names in greater detail.

    Also, I’d like to hear more about that aspect of lovingkindness which you mentioned is such a challenge for folx like you and me — how to be kinder to ourselves.

  2. Ah, Jody. How poignant, startling, even frightening this post is for some of us who know you. This struggle, which we mostly avoid thinking about and facing, in ourselves and others, you face so directly. Recently I have been reading what Tony Judt has written about his experience with ALS. We sometimes think we are all on the same journey but really we are in different physical worlds, so continuous with our minds. I, with mere old age, still functional, only reminded of my disabilities when suddenly I can’t do THAT, or don’t have the WILL. Judt with a body-prison with a mind like yours. You with a state in between. Each in our own, each with empathy but each discreet. Your sharing, like Judt’s, makes it possible for us to feel the measure our of own limitation and powers, grateful, momentarily, for our abilities, the body and world that still support us.

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