I cannot begin to convey

I cannot even articulate my distress
About the neglect
The denial
The mistreatment and the abandonment
That I feel
About my illness.
I cannot even explain
The seriousness of this disease
The severity
The torment
The agony in every moment
I experience
I cannot even express 
What it is like to not know what to do to heal myself
The uncertainty
The lack of investigation
The lack of understanding 
The danger that puts
my health in
Every moment of every day
I cannot begin to convey
The horrendous physical experience
Of being continually pushed into deep 
Total paralysis
By the slightest wrong noise 
Not just once or twice
But continually every day
I cannot describe
The feeling that overwhelms me
When my muscles lose solidity
Stop working
Stop holding me 
Stop moving me
Stop feeling
Intensify their pain
Become flaccid and cold
Numbing my body and my thoughts with them
I cannot seem to get anyone to truly comprehend
What that might be like
Like crashing on a roller coaster
Like falling endlessly off a cliff
Like diving in to empty nothing
Like being dragged through concrete
Like nothing anyone could have ever experienced normally
I cannot seem to convey
How very seriously ill I actually am
So ill that a knife on a plate 
Or even a single question wrongly timed,
spoken too loud
Can impale me to my seat
That my head will be full of burning hot knives
That my eyes will not open or will stare in paralysis
That my mind will lose comprehension
That my nervous system will jangle in utter confusion
That I will be paralysed and helpless for hours on end
And not even be able to speak or ask for help or bear to be touched anyway
I just cannot seem to get anyone to really understand
How broken my body is 
from the inside out
And how unacceptable it is
That no one
Can tell me
What is wrong
And not enough
Has been done
To find out
And now
I am too ill
To go anywhere
To see anyone who might help
Or remember the detail of things
Or cope with two way conversation
Or physical examination
Or testing and scans
Because I have been
So damaged
By trying to get answers
And help
That harmed me
And so deteriorated by environmental noise
That every ordinary thing can now literally be a torture to me
And that
Is probably
the most tragic thing
Of all.


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