Stonebird

This Blog, a record of the last twenty one days in my life, stands alongside my youtube videos as some kind of record of what it's like to care full-time for someone with severe ME , a hugely discriminated against , denied, disease: I've also tried to capture some of that in this painting (oil on canvas). Over the last few years, I have written and published two books . Right now I am putting all my resources into marketing my major work, a children's story, that has taken me ten years to write and is now ready to fly; it just might be the best chance we stand.

You could go mad here, as Hugh Marriott (The Selfish Pig's Guide to Caring, Time Warner, 2003, p. 165) warns : " Isolated. Cut off. On your own. Going bananas. " As a form of solitary confinement, as part of an impossible struggle - people with ME are the least able to actively protest against their continued oppression , as an object of attack and ridicule, not least from other ME "activists", the situation you can easily find yourself in as a carer, year after year without change, is make no mistake, likely to stretch your sanity to the limits. I have no idea if I have survived the last 16 years unscathed; but let me shout this out : the human spirit is NEVER limited ! Ralph Waldo Emerson says it much better than me : "To laugh often and much; to win the respect of intelligent people and the affection of children; to earn the appreciation of honest critics and to endure the betrayal of false friends; to appreciate beauty; to find the best in othe...

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 end...

How ironic, after yesterday's post, to find myself on the street , waiting to see my local Member of Parliament, in the "company" of three Party functionaries. One turned out to be a candidate in the upcoming local elections, one a photographer and the other must be someone because he arrived in the same car as the MP. The three men, ignoring me (this is very odd in a small village) ; there were only the four of us in the street, were talking to each other as they stood right beside me, in a circle, in important voices. One of the subjects that came up , we were there rather a long time, was Oscar Wilde's "The Ballad of Reading Gaol"; the photographer, who sported CND (Campaign for Nuclear Disarmament) stickers on his white van, parked in front of me, has just re-read the poem and found it very powerful. Absolutely. The irony, I think, given what I was describing just a couple of hours before , in my blog below, is that one of the poem's most...

Yesterday I learned how to look at the same patch of sky. My wife was so ill that nothing whatsoever was possible apart from holding her, in her pain, all day long. There were no other options. Part of the day was spent on our garden bench. It was very warm, but we were in the shade. It is very quiet here in the deep country where we live. You don't think about the miles of golden sandy beaches just 4 miles away - that my wife has never seen and the folk swimming , loving it there, eating their ice-creams, devouring the ice-cold six packs, the pine woods above the dunes, how blue and sparkling the sea must be. After a while you don't think about what you could be doing instead; for it is so hard, don't you find, to sit still, to be peaceful and centered ? After a while though you find yourself noticing the wisps of cloud way up high, the fascinating swifts in flight, the dryness of the garden on this hot day, a spider on its web, companion in stillness; then how y...

"It's a form of tyranny. But, that's the whole point of corporatization -- to try to remove the public from making decisions over their own fate, to limit the public arena, to control opinion, to make sure that the fundamental decisions that determine how the world is going to be run -- which includes production, commerce, distribution, thought, social policy, foreign policy, everything -- are not in the hands of the public, but rather in the hands of highly concentrated private power. In effect, tyranny unaccountable to the public." Noam Chomsky on Microsoft and Corporate Control of the Internet (http://www.corpwatch.org/article.php?id=1408) Peddling misinformation, untruths, manipulating , distorting and ignoring evidence, knocking back research for decades in their wake, forcing people into endless years of suffering , the medical insurance industry's foray into ME amounts to the biggest medical scandal of all time. Yet they go from strength to strength; the on...

Where time is measured by autumn's stillness where once clouds of butterflies caused me to look up, yet even the Gatekeeper is gone now, and everything is holding its breath; my books are put away. His hand a-comforting her throbbing, hurting head, the not-knowing-what-to-do- after-16-years-of this-to-ease- her-pain, wild-eyed attempt at praying, takes its cue from the dog a-watching and lets the day slip effortlessly into holy oblivion.

Dear Health Care Professional, My wife is seriously ill with severe Myalgic Encephalomyelitis (ME) All I do, all day long, is hold , comfort her, trying to block out, with my body, the pain, the numbness, the paralysis, the screaming, throbbing , itching skin that she suffers. It has been like this, every day and night, for the last sixteen years. Lately my wife is getting much worse and I am very worried. In so many ways I am losing my wife, as the disease tightens its grip upon her deadening her thoughts, drowning her normal sensations , so she is less and less aware of her body, less and less able to think, less and less able to bear touch, sound, without catastrophic consequences. When I look at my wife’s body I have no idea what is going so wrong with it, for no one is doing the tests that are required to find out. At least our excellent GP believes she is ill, however a local Neurologist that he referred her to, dismissed my wife after 15 minutes stating that all she needs...

"You get all these statements of intent to help, have these meetings, fill in dozens of multi-page forms, and then nothing happens. Except more talk, more forms and endless waiting." (Bernard, a carer, in "The Selfish Pig's Guide to Caring, Hugh Marriott, Time Warner, 2003, p. 119.) ....my heart sinks. Some initial research reveals that the old NHS Complaints procedure was badly in need of reform - and , thank the Lord, it has been. The problem, when contemplating going down the Formal Complaints road, is that ME is completely unlike any other disease in the way it has been misrepresented and manipulated by the medical insurance industry; the issues are complex and require sophisticated understanding. Added to that I have to take into account my wife's ability to deal with any complaints procedure - for it WILL make her health worse. Is it worth the cost ? In my mind, the only way to advance the ME cause and ultimately to get some tests and treatment , i...

“ If it scares you its probably the right path “, says Mark Gerzon. We had no choice but to issue our own notice of non-compliance with the NHS’s suggested compromise yesterday, my wife and I , as independent members of the consultation group. I am not sure what path the rest of the group is going down; it could go either way. But here we are, on our own again and there is much to be said for that in terms of cutting down stress and expenditure of precious energy. So much of our time recently has been spent trying to negotiate with other group members, at enormous cost to my wife and I - for any stress can be absolutely devastating in ME. This is a real issue in ME campaigning. So, here we go. On a journey to explore the NHS’s new complaints procedure; it could be that my wife is far too ill to get far. We will see. As Hugh Marriott puts it : “ Nobody ever tells us (carers) how to keep on knocking at Officialdom’s door without becoming suicidal in the process. ” (The Selfish Pig’s ...

In his famous experiment, Stanley Milgram showed that if there is contest between the voice of authority and one's individual conscience, then authority, to a dismaying degree, typically prevails. As Gregg Levoy puts it (Callings, Thorsons, 1997, p.219) "Just as the light of the cities obliterates the light of the stars, so the weight of other people's authority can block out the singularity of our own." What I fear is happening is a steady compromising with the NHS by default. It is incredibly frustrating trying to deal with it.

My wife is not a disinterested observer in this process, despite all her suffering she, as Sam Keen (Fire in the Belly, Platkus 1992, p. 165) puts it, roars with the "thunder and lightning" in her. Keen , in his extraordinary book, describes those " spiritual warriors alive with moral outrage" who take "risks..and give vent to prophetic anger at secret wars and hidden government. " Never have I known my wife to be so angry as she was, yesterday when there appeared to be a hint that we might go along with the NHS's "compromise" . Her anger , which I cannot possibly describe, was white hot with outrage. ME sufferers have had enough of being denied, ignored, manipulated through truth and lies out of existence ; this is the time to say "no more !" When you really suffer, says John O'Donohue (Eternal Echoes, Bantam Press, 1998, p.161), then you know where "Nowhere is". Nowhere is huddled up in the corner, out of sig...