In Illo Tempore (At that time...)
There was a time before the mid-80's , when ME was taken so seriously that an ME Bill was put before Parliament . Way before "CFS" destroyed everything, ME was properly seen as the major public health risk that it is.
In Illo Tempore , is the title of one of Shamus Heaney's poems, evoking an older world. Back in the early 80's, in another life, I was training to be a Registered Nurse for people who have a learning difficulty. Part of my training, I have only just remembered, involved "shadowing" someone's life . God help us, it was useful to learn how to sit for hours and hours, with nothing happening.
The point is, my training back then, felt radical, on -the -edge. I emerged qualified and burning with anger at the injustices that destroy lives.
Now, however, when I deal with health professionals, as a "lowly" full-time carer, it's feels like it's all about spin with no substance. There seems to be such a toleration of endless suffering, that it apparently matters little really, what my wife and I have to say. Implementing NICE is all important, "consultation" turns out to be a paper exercise in PR. That is how it feels.
In his fine book, Clashing Symbols (DLT, 2003), Paul Gallagher SJ, explores Post Modernism, our current culture is characterized, he says, by "multiple fractures". where "life is an indifferent game" and "something is sick in how we manage this planet....Impotence of imagination rules ..Distortions of truth come to seem normal."
We have just received a glossy information pack from ICAS - the Independent Complaints people. My wife and I can choose to have an advocate represent us . However the dilemma is this : will the advocate, however well meaning, have the first idea of the complexity of ME ?
The NHS will spin a wonderful story that all is being done, as will NICE, as will Action for ME etc.
To advocate effectively, how essential is it to grasp the intricate politics, the overwhelming influence and propaganda of the medical insurance lobby - and how hard is that ? It's taken me all of these 16 years to work it out for myself . FOR YOU JUST WOULD NOT BELIEVE IT.
Please excuse the language, but I want to close with this incredible passge from John le Carre, which maybe only the oppressed can really understand :
I am speaking, Mr Mundy, of the corporate state and its monopoly on information. I am speaking of its armhold on the objective truth. And I am wondering how the fuck we turn back the tide."
(Absolute Friends, Coronet, 2004, p.275)
In Illo Tempore , is the title of one of Shamus Heaney's poems, evoking an older world. Back in the early 80's, in another life, I was training to be a Registered Nurse for people who have a learning difficulty. Part of my training, I have only just remembered, involved "shadowing" someone's life . God help us, it was useful to learn how to sit for hours and hours, with nothing happening.
The point is, my training back then, felt radical, on -the -edge. I emerged qualified and burning with anger at the injustices that destroy lives.
Now, however, when I deal with health professionals, as a "lowly" full-time carer, it's feels like it's all about spin with no substance. There seems to be such a toleration of endless suffering, that it apparently matters little really, what my wife and I have to say. Implementing NICE is all important, "consultation" turns out to be a paper exercise in PR. That is how it feels.
In his fine book, Clashing Symbols (DLT, 2003), Paul Gallagher SJ, explores Post Modernism, our current culture is characterized, he says, by "multiple fractures". where "life is an indifferent game" and "something is sick in how we manage this planet....Impotence of imagination rules ..Distortions of truth come to seem normal."
We have just received a glossy information pack from ICAS - the Independent Complaints people. My wife and I can choose to have an advocate represent us . However the dilemma is this : will the advocate, however well meaning, have the first idea of the complexity of ME ?
The NHS will spin a wonderful story that all is being done, as will NICE, as will Action for ME etc.
To advocate effectively, how essential is it to grasp the intricate politics, the overwhelming influence and propaganda of the medical insurance lobby - and how hard is that ? It's taken me all of these 16 years to work it out for myself . FOR YOU JUST WOULD NOT BELIEVE IT.
Please excuse the language, but I want to close with this incredible passge from John le Carre, which maybe only the oppressed can really understand :
I am speaking, Mr Mundy, of the corporate state and its monopoly on information. I am speaking of its armhold on the objective truth. And I am wondering how the fuck we turn back the tide."
(Absolute Friends, Coronet, 2004, p.275)
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