Slipping

  My eyes open before I realized they were closed again.  Two years this time.  The windows narrow and the lights dim each time.  I don't know what to fight for anymore.  Hope is hiding behind the moon.  Looking glasses, time travel and that fucking white rabbit all dance around me, yet I reach for nothing. I am not adapting now.  I am disappearing.  Maybe disappearing is the adaptation.  I scream into voids, despite believing I have no right to the things I scream to acquire.  I thought about trying to write my book the other day.  Finally.  The one so many believed I would write. The dreams do not come.  My mind is too preoccupied with my body and the demands it makes of me just to get out of bed.  Whining, simpering.  No, I am not inspirational.  I am not out saving the world.  I am not.   

Delayed Reactions

     I must live the epitome of the delayed reaction.  Sometimes I don't realize until years later what really happened or how it effected me...or even that it effected me.   I go through the entire cycle of a relationship, for instance, only to understand a year after it has ended how I truly felt about the other person.  The dissociative state I have lived in all my life, which waxes and wanes in intensity, prevents me from accurate real time perception.  I told a therapist once that I feel like I have a layer of glass just under my skin...and I think I meant that I can be hurt in the moment....sensitive as hell...but the real damage is only reflected through the glass underneath much later, from a safe distance.

Hiccups

Just as I find myself in a groove, writing a short blog a day, I fall down a pain tunnel.  This is the blood pressure raising, heart racing, "fuckshit" scream-inducing kind of pain.  I can't think straight outside of the nearly two hour "slightly less than suicide-inducing" window my one vicodin a day allows me.  Sometimes two a day.  Never enough, but always too much.  I don't want it to stop working because my body adapts to it.  My asshole adaption, always.  I'll be back on the other side of the tunnel.  For myself. and for you, if you are out there.

Chronic Illness is a Full Time Job

     Some days I am on the phone for hours.  The phone calls overlap.  As I am sorting out one problem another doctor's office is returning my call, and I stress out because I worry I won't get through to the person I need when I call back. All of this takes place between home health appointments of various natures.  Today I have four different appointments.  Two home health aides, occupational therapy and physical therapy.  Local taxes need to be finalized, transportation for tomorrow's doctor's appointment arranged, and I await several return phone calls for numerous issues including the status of my ramps being installed so I can safely enter and exit my apartment without an ambulance and a stretcher and a ton of shame.  

     I've already mentioned I have MS.  I also have POTS (Postural Orthostatic Tachycardia Syndrome), atrial fibrillation, and unspecified connective tissue disease.  There are a few other issues here and there, but those are the bastards that make my life so interesting from day to day.  Fuck, I am so tired.

Dark-Adapted

Adaptation is tricky. It's a Goldilocks situation. Neither adapt too little nor too much. All things require balance. My physical therapists, occupational therapists, (neurologist even) are stunned by my range of motion and physical abilities in spite of all things. I put that down to my past commitment to yoga. Balance. My psychologist in rehab, however, sees the dark side of my adaptability. I twist and curve and shape myself around external forces, spiritually and socially, to survive. I said yesterday I am not interested in my pain, and I meant that. I find it boring, self indulgent, and exhausting. That being said, I have a need to extract the thoughts and feelings that snake around my field of vision and fling them at the world. I am engorged with me-ness...and consequentially can not be me. Raging at the world I find myself in, I need room inside for new feelings, new courage, new ideas. Calls to senators and representatives=check, but I am better than that. I have more. All this word vomit is me making room to find out the form that more will take.

Crying Alice, at last.

Time freezes unexpectedly, suddenly. It thaws just as suddenly, and you come back to life gasping for air, wondering where you've been, where you are, and what's happened in the space in between. This has happened before. One day it will happen again. The last time lasted nearly three years, following the death of my mother. I woke up to find myself transformed in largely positive ways. I found purpose, courage and a capacity for love I'd previously been lacking. This time, the here and now time, lasted nearly six years; six years of paralyzing numb dissociation, paralleled by the creeping numb paralysis of my body via Multiple Sclerosis. The catalyst for my six year hibernation was the event described in my previous post. I did not awaken improved. My health has reached a zenith of alarmingly assertive prominence in my life as it's nadir of quality wails inside the walls of my heart around the clock. Yet I am here, gasping for air, grasping for an anchor. I know what lies in the space between then and now. Erosion. Destruction. Neglected husks of relationships I had no will to save. This time, I woke up in a hellscape of personal pain, amplified by the hellscape of suffering all around the world. I'm not interested in my pain. That's the positive of now. Here you will find me, searching for a way to fight.

They say "You should write a book" I say:

“You have 15 minutes.”
I stepped past the hate in her voice into the dim room, registering the withdrawal of flowers, of cards, of warmth, of all things personal, of any sign of life. There was a cannula taped to the bloated, babified head, but the morphine pump had drifted away from the bed, also withdrawn. I could hear the thing in the bed moaning intermittently, feel the angry heat that pulsated from it’s undead skin. I heard the oxygen sucking sssshhht of the door sealing behind me, sensed the prim little woman standing against it in a nurse’s uniform, there to guard the thing in the bed, to protect it from me.

I felt scarabs cracking beneath my feet as I approached the center of the room. I felt nothing as I spoke the words of absolution: dry and empty and not there. I stroked the hot swollen forehead, heard everything I did not feel in my voice.

My mind skipped to another room, a small hurt thing lying in a similar bed, confined to an oxygen tent, screaming at the plastic walls crawling with spiders.

I don’t remember stepping past the hate, past the dozen pairs of eyes filled variously with suspicion, contempt or pity, stumbling through bright corridors, emerging somewhere, emerging away.

I left that room. I left both of those rooms. But what was inside came with me.