What is the word beyond unbearable?

I float around

In a sea of impossibility
Punctuated and defined by pain and paralysis.
The world floats by without me.
People live in the world.
I, however, live life below the starting point for access.
There is no word for this space.
I call it 'below Maslo'.
Where hopes and dreams are just that.
They never come to fruition.
They are shrouded in impossibility.
Every lost moment takes me further from the world.
Every holiday missed, every visit denied, every activity put on hold,
Every hope of interaction, feeling, connection, stunted and then ripped away
By torment and torturing symptoms:
The environment a play space for the able
Has become a hostile, dangerous, impossible place for me.
Very Severe ME: so much more than disability,
So much more than most illness experience,
Abstract in its unexpected, unpredictable, catastrophic and deteriorative nature.
A living nightmare for the most afflicted
Never able to feel well in any moment
Anywhere within or without you.
Always in indescribable agony.
Every level of function and communication and expression
Is damaged in some indefinable yet utterly complete way.
The indescribable becomes the normal
Thus the isolation becomes complete.
There are no words
To describe the total, tortuous experience of the environment,
So much more than even the severely affected already know.
What is the word beyond torture?
What is the word beyond torment?
What is the word beyond unbearable?
What is the word beyond indescribable?
And who in the ordinary world, going about their daily busy lives,
finds us more than an inconvenience and a disappointment?
Who can ever understand the broken places I exist in
Harmed by people, harmed by virtually everything.
Who really gives a fig?
They would have to give up too much
To try and really understand.


  1. Greg, email me with the title "ME" or "Stonebird" so I don't delete it without getting your contact detail. I have some info. I too had Very Severe ME... fully bedridden in pain worse than childbirth.



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