INTRODUCING THE POETRY OF RICHARD SMALLFIELD http://stonebird.co.uk/RS/index.html


“Submerged
In black silence,
Entombed
In a bed,
There's a person
Inside;
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 :
https://soundcloud.com/greg-crowhurst/seventh-circle-of-hell
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.

Comments

Post a Comment

Popular posts from this blog

When I am 64 and other false positives : The PACE Trial.

Image
Greg Crowhurst 6 th February 2013 “Much of what we think we know based on conventional statistical studies published in the academic literature stands a good chance of just not being  so “  Roger Pielke Jr http://rogerpielkejr.blogspot.co.uk/2012/03/false-positive-science.html Imagine  I am a psychiatrist and for £5 million, say ,  I want to prove that CBT and GET are a safe and useful treatment  for ME. The good news is “ how unacceptably easy it is to accumulate (and report) statistically significant evidence for a false hypothesis ,  according to Nelson and  Simonsohn (2011).  Their frightening  paper “ False-Positive Psychology, ” shows  how  “ undisclosed flexibility in data collection and analysis allows presenting anything as significant ,” .  In fact Nelson and Simonshon statistically  “prove” that listening to “ When I am 64 ” by the Beatles can   make you a couple of years young...
Read more

Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis

Image
Greg and Linda Crowhurst (August 8 th 2013). Synopsis Paralysis is a symptom that is rarely highlighted in the literature for ME, yet is found amongst the most severely ill ME population and even some of those not so severely affected. My wife has experienced it for almost 2 decades, without adequate exploration, alongside exposure to denial and dismissal, ignorance and neglect as well as harmful treatment. We wanted to find out if there was anyone else with a similar experience to my wife's or if she was a rare and very severe case. We wanted to highlight the seriousness of this symptom and ask why it is being ignored and down played not only by the medical profession, with its inappropriate focus on fatigue and the psychosocial response, but also by the main charities, none of whom, flag it up as a main symptom. This qualitative research study indicates that there are significant others experiencing apparently similar paralysis and that my wife is not un...
Read more

DO NO HARM, DO NO BETRAYAL

Image
By Diane  I'm not sure where to start but this is my story so far.  My name is Diane and I'm a carer for my adult daughter, Lili, who is completely bedbound with very severe myalgic enceplalomyelitis.  For Lili, M.E. didn't come slowly.   It very rudely crashed into her life and very quickly stole her health, taking bigger and bigger chunks of it as she deteriorated.  It all began when she experienced a gastric-flu virus of a sort she had never experienced before because this time she never regained her health.  A couple days later, she woke up with agonising head pain 'like her brain was on fire', with severe neck pain – she also couldn't move her neck, and her whole body was paralysed.  She's not sure how long she stayed like this as she was in and out of consciousness but she truly felt that she was going to die because her body was undergoing an extreme crisis.  To cut a long story short, it took a year to get a diagnosis durin...
Read more