The Bitch of The Wait

I had a bad flare the other morning.  I realize that description is vague and in truth I don’t have words to describe what it means.  Everyday my body resists gravity.  And there are times I can’t join the family for dinner because I need to be laying down (flat with my feet up on the wall, waiting the bitch out.)  But somehow those are the “normal” and “manageable” symptoms that are there more or less from sunrise to moon set.  I did mention the pain right?  But I digress, besides the normal cast of characters, there are those sudden and unbidden flashes that seem to take on a life of their own .. or maybe it is that my cognitive coping exits stage left in those moments.  Regardless, it had been maybe a few weeks possibly a month or two since I had a really bad flare.  There wasn’t anything going on, nothing unusual, certainly nothing strenuous that precipitated it, though strenuous with dysautonomia can be taking a shower, fixing a cup of coffee or using the loo, so who is to say I did nothing taxing but certainly nothing out of the quotidian.  I hadn’t eaten anything, nor had it been too long since I last ate.  But when this hits, it is distinct and without question an interruption of the regularly scheduled program.  There is at once a pressure in my ears …as if all the membranous labyrinth of my inner ear was pushing the cochlear fluids in some kind of microscopic tidal wave inside my brain.  At the same time, my upper teeth feel like they are being pushed out of my gums.  Not to mention the twenty five feet of intestines that no longer want to stay inside my abs.  Sometimes my heart skips, occasionally it races but often my pulse and blood pressure are fine.  And it has been this way for as far back into my adult life that I can remember.  Simply put … sometimes I flare.

I woke the redneck up … tapping him on the shoulder and giving him the hand signal for “flare”, then pouting my lips saying .. “Its bad”, then I turned and headed out to the pond.  My daughter was kind to get me a hot pack and make sure I was as settled as possible until my husband came out to sit beside me.  It was all I could do to just put my head down on top of my knees and ride the intense waves of discomfort.  My son came out to say good morning.  I looked up and said, its a bad one, and he said, awe, its been a while since you’ve had a bad one, I’m sorry.

So I waited with the inevitable pain and discomfort.  The knowing that there was nothing I could do to make it go away.  I was on my knees with my head down on the stones next to the koi pond … in prayer pose as no small pun I suppose.  My husband was silently sitting by my side as he was no doubt trying to still wake up sans coffee.

Then the oddest thing happened … our little itsy bitsy schnauzer (who has actually grown up to be a full size miniature) came over in between my husband and I and used his thigh as a stepping stone to crawl up onto my flat back as I sat very still.  Bitz welcomes being held, she does.  But she is full of effervescence and high energy.  So when she pressed the weight of her full body down into my spine and laid her head and neck flat against my upper back … I could feel her presence.  At once I was reminded of Bella and the acupressure points she would touch against my back as she would press her body into mine.  And how my precious Dalai would sit in my lap and lean into my ribs without any movement and just wait for me to finish a flare.  Somehow, even without ever meeting my previous rescue dogs, Mz Bitz knew the dharma and seemed to know just where to place her body as we waited out the storm.  Occasionally she would stand, press her paws around the edges of my spine … and then sit back down and lay her body as flat as could be, so that all of her was touching as much of me as possible.

After some time (much more than I would have hoped for, but certainly less than the eternity in my mental story) the pain and pressure eased up and I could feel the flare slowly lifting.  I sat up, exhausted, and leaned into the garage door beside the pond.  Bitsy slid off of my back and sat up at my feet checking on me every now and Zen.  The redneck went inside and got a cup of coffee that was waiting in the pot.  Which was what I had been doing when the flare first hit.  And for the rest of the day, my body was weak and I had to realize that sometimes there is simply nothing to do but wait and let my body recover.

There wasn’t anything to do.  No pill to take, nothing to prevent the next flare and no way of knowing when that would be.  In moments, or marches at monuments, there may be nothing more we can do but express that which we feel in our heart and embrace those who see and understand why we are suffering.  In silence or service, we are there for one another.  In a not so shaggy dog story we find a way to let them know we have their back, and they are not alone.

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