Showing posts from December, 2011

Does she want to be well ?

Someone asked Do I want to be well After so many many  years Of being ill ? Why But tell me this, do you think This is the right question To ask? It shows nothing of understanding Or empathy With my reality. Is it not then perhaps cruel To ask this of me When there is no path There is no possibility Of achieving this aim  ? Similarly I might as well  ask Do you want to go Centre of the Earth? You would of course  say It is not possible. You would say What a bizarre question to ask me. I cannot do this thing you ask of me. There is  no pathway to follow. There is no vehicle within which to travel. I would come to physical harm in trying. Perhaps you might  want to go there as an idea, But in reality It is out of the question. Perhaps you would like nothing more than to go there. But is it possible? Absolutely not. So why ask the same of me? Is it possible to be well? Is there a path? Do I want one? Is there a vehicle to get there? Of course not. Do I want to come to harm in trying? Cert

Boxing Day

Boxing Day was the tail end of an obscure Christmas, the fag end of a year of abuse.  My wife in too much agony to be touched, even slightly, without violently flinching, unable to feel her body below her waist, slumped, paralysed , in the sudden red glow of fireworks from next door, a party to which we were not invited. Boxing Day was the pain in my guts, the longing to go running on a beach with her, knowing she is more ill than I have ever known. Christmas Day was the ME kicking her hard in her back and head. There is no let up to the disease's merciless attack, its progressive worsening, its savage ravaging of my wife. Boxing Day was me feeling very small  indeed, an impotent  spectator at the ME feast. So angry.  Long Boxing Day of pain.

A Christmas wish


ME Spring

The  cold eats into me Chilling my bones And sending nerve pain screaming round my  battered body Winter is here Yet spring will come Sun will shine again Things will change New growth will come But not I fear in ME world The injustice rages through my body Cuts deeper than the  icy chill of winter Rattles round my bones Demanding attention Pierces even the depth  of my empty brain fogged  mind Shouting out its wrongness Demanding attention Gnawing at the centre of my being. How can we continue to bear such wrong in the world ? Wrongness that destroys truth That evades healing That persecutes the vulnerable That punishes the most ill. Surely we cannot be frozen out of society  for ever By misrepresentation Misinterpretation Neglect And banishment ? Where is Justice ? Where is Truth? Where is honesty? Where is  integrity? The weight of the lie must surely break the bough of untruth eventually? How long do we have to stay in the  psychiatric winter of  misdiagnosis ? How long will be fro


The moments tick by So slowly Yet time is still running out Days slowly drip by And in the centre I sit Or lie Unable to function Unable to express The many gifts and talents That God has given me They are eroded away By deadly silence And complete functional inability Till I  become Someone who once was Someone who once did Someone who once lived Someone I no longer recognise For I am tossed this way and that By every passing noise And discarded on a heap of empty moments That should have been Multi-coloured and full of sound And beauty.  13.12.11

A letter to Lord Simon Wolfson, Chief Executive of NEXT

Stonebird is immensely proud to publish this excellent letter by Joss to Lord Wolfson, after his recent appearance on BBC's Question Time.   Where's The Benefit  describe  what happened on the programme  :   ( ) "This week on Question Time judge Constance Briscoe claimed there were vast swathes of fakers out there, but when asked how many she, unsurprisingly, didn't know.Next boss Lord Wolfson then claimed that JSA  (Job Seekers Allowance)  wasn't the benefit with the fraud problem, but disability benefits.....No-one corrected him." Here , then,  is Joss's letter to Lord Wolfson : Dear Lord Simon Wolfson, On Question Time (8 th  December 2011) you said that "the system that is played more than any other, incidentally, is the disability benefits". This is untrue. In July of this year the government published  Fraud and Error in the Benefits System: Preliminary 2010/2011 Estimat

Advent Reflections

A Journey through Advent Every day of December,  until Christmas , Stonebird will be posting an Advent Reflection on the reality of living with Very Severe ME. The reflections can be found here :