2011 : a wish-list.

Greg & Linda Crowhurst Dec 30 2011 (permission to repost)

"Daring ideas are like chessmen moved forward; they may be beaten, but they may start a winning game." Johann Wolfgang von Goethe

By the skin of our teeth, we arrive at the end of yet another year of the torture and living hell that is Severe ME. Here is our wish list for 2011 :

• That the truth of XMRV will be uncovered and revealed.
• That the NHS will at last perceive the folly of backing the psychosocial approach
• That medical Consultants will find the honesty and integrity to speak out about the reality of this terrible disease.
• That the newspapers will lose their bias and stop reporting the psychosocial approach , which charades as treatment and the truth of ME.
• That ME will finally be treated separately from CFS and that the biomedical truth of ME will at last be acknowledged and scientifically and medically investigated.
• That the Medical Research Council will stick to its recent announcement , stand-up against the psychiatric bias and back soild biomedical research into ME.
• That the UK Government will address the shocking vested interests underlying the crass psychosocial services that perpetuate harm against people with ME
• That people with Severe ME will no longer be neglected, negated, abused and virtually excluded from medical research.
• That the PACE trial will not have the harmful effect that everyone expects it to have, that it won't be allowed to influence NICE's policy and practice within the UK.
• That Norfolk will finally be the first PCT to provide a biomedical service with integrity, in the whole of the UK.
• That the new Benefit Changes will not do harm to people's quality of life, that the UK Government will actually develop appropriate biomedical policies and procedures.
• That CBT and GET will be confined to the dustbin of history

Call us dreamers at your peril : "...the dreamers of the day are dangerous men, for they may act on their dreams with open eyes, to make them possible." Thomas E. Lawrence

died

Came in out of the dark to find a large spider on the door. Eight homeless souls  perished in Poland yesterday , where it is at least  twenty times colder outside than  here,  this frigid morning.

At the end , did my sitting by the wood burner, lang syne,   anguishing about the writer's lot make any difference ?

For a point in time , in the bathroom ,  I suddenly  appreciated my Dad's need to sweat about God's forgiveness, five minutes before his death. Five years over and done.

Actually, yes;  a turn of phrase was found. A writhing , half-formed critter, the death and life of us all; that is what I was working like a dog on busting.

1843

Started reading  Fear & Trembling yesterday. I have profuse regard  for Kierkegaard's torment ; here is a dedicated writer.

Not long ago , at the back of the village church, where they stock exhausted  paperbacks for 50p, I invested in The Journals of Kierkegaard 1834-1854; small outlay  for someone to turn to so often, that the hoary cover has fallen off.

The anguish  of being a wordsmith.

In 1843, the year F&T was published, Kierkegaard ponders :

"The hardest trial of all is when a man does not know whether the cause of his suffering is madness or guilt." 

Must get on

Posted   pictures yesterday to a magazine that is publishing an article I sent-in  on suffering. That gives me until February then to complete the accompanying book; my third spiritual work.

It opens doors if you can hot-wire your submission to a just-published  article.

Wow, the electrifying  poetry of Alice Oswald; a dear friend has gifted me Woods etc :

"Please realise, friends. Time is moving in this neighbourhood.
This is Dawn, the unspeakable iridescence of all swiftness,
impatiently brushing past, be quick...."


from : For Many Hours there's been an Old Couple Standing at that Window.

As an adventurer ;   my toes are tapping.

Point Vierge

When we lose control, when we lose our power, when our eyes can see nothing, writes John O'Donohue (Eternal Echoes p. 173), this is how suffering makes us aware of our own inability.

We hustle to make sense, as I have tried in this blog, of our understanding of failure.

Of who we are .

Like a lusting  man, I have returned to Thomas Merton this morning,  fingers dry as dust for insight. It is that most precious of times, the "point vierge" of the dawn;  when "creation in its innocence asks for permission to be ".

The point of nothingness in the middle of being.

The profound emptiness.

The "incomparable point of contact with mystery."

This is where suffering leads.

Dawn.

Sailor Sam was just passing by

..what a great title for a book. Maybe that is that is left ;  after my heavyhearted experience with the writer's colony.

It has been weighing me down, forcing me , painfully , to question my (slipping ??) grip on the world .  There are two alleyways of meditation. One is the realization, as if I have been asleep, of what I have done. Here is an online gathering of kind, supportive , creative souls, and I, I in creepy contradistinction to all that I affirm, so hold dear, have reacted, almost instantly,  to their kindness in the most derogatory way. I have operated  not from a place of peace,  but with an astonishing anger that many have found  disrespectful and hurtful.

I do recognize a hackneyed aspect of myself  here and it pains me. This terribly  fragile ego, this child who never fits in, this onetime worn-out somebody. No longer.

Stripped naked in the recent snow though, I do not feel the cold wind on my body. Driven by  the same lust for life that spoke to itself, up against the playground wall and in the loneliness of the railway station , one more kid who will never be cool,  I will always seek, in a self-destructive way, depending on your point of view   the solitude of the garden  and the company of  the old sea salt;  the Captain ,who knew a raging storm and survived to live with  starfish and shells on the sand, forever smoking his pipe  near a magic cave, presumably in Kent,  where it is always summer-time. That  is where the bears go .

It has always been so.

Adrift

 So , there's an insight in Transactional Analysis called a "Stamp".

In my efforts to improve things for my wife I have grown disheartened with  online "advocacy"  groups that substitute posting stuff on the web, for actually creating  change in the real, hard world. 

I have grown intolerant of the puffed up egos that  work against real commitment.

With my back to the wall, I am raring to get my book published. I don't have  any appetite to mess or be messed  about.

But,it was unfair of me to burst in on Litopia ;I am so touched and moved by all the messages that I have been receiving, bearing such a large Stamp.

I have received so many supportive messages; however I have upset so many more. That I regret, very much..

So apologetic, bashful, blushing: am I ??

Well no.

All I have done is state my truth - a valuable and brave truth as far as I am concerned; I stand by my experience and the tender  insight that comes with "new eyes". There is always a critical choice to be made between  game-playing and engagement ; all anyone can do is make their own mind up on that.

Apparently I am in a minority , my acquaintance with the Colony is not a shared one. As I said I am prepared to take responsibility for that; my involvement is no doubt clouded and I definitely should have given it more time.

Trouble is, the author part of me is far too  wild, ferocious, raging, raving , unrestrained and truculent ; too busy clambering up moonbeams,  to dicker  with any connotation  of  balderdash, baloney and bananas.

My  path  is  a  windswept, desolate, undomesticated , berserk one. When the aberrant author is out; better get out of the way. Sailorsam, I think, is probably  better off  being left  to drift  alone  on the high seas, with his love songs and dreams.