In black silence,
In a bed,
There's a person
But he's living
In dread
Extract from “The Hermit” by Richard Smallfield

Here I am, tearing my hair out, writing a detailed, professional response to BACME’s dreadful Severe “CFS/ME” paper.
For how do you express the full horror of the situation we are in ? I don’t think you can, not in plain words.
Our situation can only be expressed in poetry and song. I find I write best, not with a pen but with an electric guitar :
There are some, very, very rare poets who are so gifted in expressing the inexpressible suffering of ME, that their verse knocks you backwards and makes you want to read it out loud:

Staring –
Staring out at an endless wilderness of days
Searching for an end to this waste;
But only eternity's featureless expanse

Stares back at me.
“Staring” by Richard Smallfield

How many can identify with that? There are no words.

I am immensely proud to have been given permission to publish some of Richard Smallfield’s incredible work on Stonebird. It is the reason I created Stonebird - to raise awareness of the most invisible suffering and enable others to have a voice too.
While I have been writing the BACME paper, I have also, in blessed moments of sanity, been building Richard’s webpage. The two of us on opposite sides of the world; me in England and Richard in New Zealand.
So here I am at about 40 pages, so far, into my BACME response, for there is much to say about a WHO classified Neurological Disease, with multi-system dysfunction, being misrepresented as a Fatigue condition exibiting symptoms without pathology..
With magnificent clarity here is Richard’s summing up of the “sublime ignorance” , that I am still trying to express, with all my heart and soul, in a much more long-winded way!
so you think you know
know it all
all there is to understand
can see through me
through my body, my mind
my motives, my pain,
through walls even I cannot penetrate
walls you think I've built,
battlements even those closest to me can't see--
yet you, you in your sublime ignorance
think you can see it all
–-unbiased, unprejudiced, untainted by involvement;
can see with true perspective from the outside; all I can say is:
you know nothing.
“The Bystander” by Richard Smallfield
They "know nothing". Exactly !
Richard’s poetry is to linger over. I mean, just take this:
I have seen ignorance from the esteemed, bigotry from the ignorant; incomprehension from the learned, complacence from the comfortable. Yet I have seen wisdom from the scarred, understanding from the broken and love from those who listen
Extract from “Rooms” by Richard Smallfield
Oh, you are going to be stunned and deeply moved.


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