The Scream

My experience of DBS

I feel the inevitable 3rd hourly, slow creep of invasion, witchy pain fingers beckoning .  The cackling I imagine calling  me back for  punishment.  My proud, strong , capable body shutting down. Grinding to a near halt.  Vertebra shouting revolt at the familiarity that will dictate the level of discomfort or what the common,  non discomfort enduring soul would call .. agony.  

But it is a slippery slope , an ever down wards spiral if I allowed THAT word to take root in my psyche.  Similarly the reverberations of the word PAIN.  Well meaning paramedics have requested disclosure and naming the rogue let loose. 

I accept responsibility. It has been my free choice . I have consciously chosen clarity of mind but pay the price in a currency of pain. My mind has always provided a sanctuary, a place of refuge. I lost that sanctuary completely,  post Deep Brain Stimulation implanted in August ,2013 ( with a redo in March 2014 ) 

 I felt like a poltergeist haunting my brain and body, unable to accept that I. ,Julie, no longer existed. Such were the unfamiliarity of my brains machinations.  

The increasing disassociation with reality, lack of any restful sleep, in addition to ever increasing prescribed Parkinson’s medications, antidepressants and antipsychotics, only served to exacerbate my rapid launch into a constant state of panic.  That and a sense of FURY at the medical world that just would not hear my screams. 

That I had paid $30000 (gap) for the privilege and my private health fund $150000, infuriated me further. 

Raised to swallow sickness, to  set the acceptance face, SMILE,  cook, clean, work, study, teach , accept what a woman must. My eyes perceived a woman to be a needer, breeder and feeder. A woman made the world right.  All could be overcome if one tried hard enough.

Guilt my factory default, I had come to understand this as my truth.  Best I accept blame . 

Deep brain stimulation would work , I would make it so. 

But it didn’t And I couldn’t.

When I expressed disappointment DAY 3 post surgery, to the neurologist responsible for the surgery, I was yelled at.  I was in bed, my head shaved completely, the 35 stapled head wound like a crown of thorns, I was to be crucified . He sat , observing me for 10 minutes then rose , stood beside the bed looking down at me. 

“You, are a disappointment !  You could have been a Parkinson’s pin up girl…   I  had expected you to make an effort , be patient.  YOU  should be grateful to all those who have been responsible for providing the opportunity that allowed you to have DBS” 

My recall of this condemnation is etched ,indelibly .  Slow motion… I see it as if an observer.  I could not comprehend what he saiid but I knew I was to be blamed . It WAs somehow my FAULT 

Of course, it was my doing but how was I to remedy this?  I asked the Neurologist HOW ?  He yelled , “ oh just GROW UP!,” 

At this point neuromodulation commenced.  Electrical current was turned on , sending continuous electrical impulses to the brand, spanking new probes I implanted in my sub thalamus. My eye balls felt that a vice was slowly squeezing them. Obviously, I was being punished.  This was familiar,  I was a bad girl.. just as I had been before… memory of previous brutalisation flooded through synapses 

Published by Jules

Person with Parkinsons I am. I paint, I write, I live the best life I can.

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