Satori-5 Supplement

Welcome

      As suspect number-1 in the line-up of chemicals that prevent me living indoors and sleeping in a warm comfortable bed like a 'normal' human being, I once again repeat my "flame retardants" mantra to my GP in the letter below. The last time I had spoken to him about this he had expressed what appeared to be a sincere interest - and had asked for more information on it. I was more than happy, despite being desparately ill with both M.E. and MCS, to both get it and give it as soon as it became possible for me to do so.[Med-14c].

      Once again too I find it necessary to correct my GP's gross understatement regarding both the extent and severity of my MCS illness [a constant problem with him regarding my M.E. illness as well]. I also have to correct his misplaced emphasis regarding my struggle "to cope". Sadly this is an all too typical state of affairs for the M.E. and/or MCS sufferer, and it causes me no end of suffering as a result and no end of problems in my unavoidable interactions with 3rd parties like benefit agencies, housing associations, social services, and so on. Every step you take in any of these fundamental directions almost instantly homes straight in on the local GP. None of them - and I do mean none of them - will do anything at all without a clear medical statement of support [see "Other Relevant Correspondence" supplement for perfect examples of this]. If that kind of medical support is simply not there - then you are well and truly up shit-creek, in all manner of ways, without the proverbial paddle!

      When it comes to M.E./MCS and conventional allopathic medical practice what one soon finds as a genuine MCS sufferer is that sheer medical ignorance and outright medical quackery abounds. Couple that ignorance with a mere pinch or two of arrogance [which, strangely, seems to be there for most by default - perhaps they teach it at med-school?] and what you invariably end up with in my now considerable and sad experience, [and the experience of countless other MCS sufferers also], is a ruthlessly persistent and sickening kind of self perpetrating militant ignorance that, presumably, gets harder and harder for them to back down from the longer it is allowed to run on uncontested. Humility it seems is something of a rarity in modern medical practice. And what a great pity that is. Isn't it from our greatest mistakes that we learn the most?

      We trustingly, and often unquestioningly, place our health and our very lives in the hands of these medical 'experts'. However, we must always remember that they are certainly not in any way infallable. Indeed - far from it. They do make mistakes - and, rather alarmingly, they actually make them by the truck load! For example, in America it is a rather startling statistical fact that more people are killed each and every year by doctors making mistakes than are killed nationally across the length and breadth of that vast nation by the myriad of guns with which it positively bristles! In other words in America you are statistically more like to be killed by a doctor than a gun! Incredible? Yes. But absolutely true nonetheless.

      Sadly, we in the UK have little grounds for feeling superior in that respect. The statistics, when expressed as a simple percentage of the population killed each year by doctor error, fare little better than those of America. And that startling statistical picture remains a frightenly similiar one right through all of the so called 'modern' western countries! Now - why the hell is that?

      No reasonable person will have problem with the idea that our doctors should be told when they are getting it wrong. The big problem with this common-sense response however is that they generally don't like when you do that. Even when they are getting it wrong big time - every day and in every way - like they are with the MCS illness and, consequently, with its isolated and vilified sufferers also - who then have to carry the substantial cross of their GP's sins on a back that is already breaking under the intolerable strain of a crippling 'new' - and very poorly understood - physiological illness.

      If my many long and unbelievably harrowing years as a severe MCS sufferer [and struggling amateur M.E./MCS researcher] has taught me anything at all - it is that mainstream conventional allopathic medicine knows absolutely nothing [and I do mean ABSOLUTELY NOTHING] about the MCS illness.

      Unfortunately for me, despite having had the oportunity of observing the development and progression of the MCS illness first hand over many years, my GP still seemingly knows very little of any real value concerning it either. This became sadly and much more painfully obvious to me in the circumstances running up to and immediately preceeding the writing of the letter reproduced below.

      To get the context right here it is very important for you to understand that the winter months prior to writing the short letter you are about to read were exceedingly and increasingly difficult ones. As the long crisis grew [as previously described in previous sections] and finally reached a 'peak' that would be readily accepted as unendurable by any normal, decent, and fair-minded person, my wife of some 25 years suddenly left me, tottering close to my then darkest hour- like a thief in the night, and without the slighest warning. That was on the 17th of January, 2002. The letter below was written five days later.

      The immediate impact of my wife's sudden and treacherous desertion, on top of the intolerable burden I was already buckling under, was nothing short of devastating - financially, emotionally, and of course physically [since my 'wife' was also my 'carer']. The timing could not have been more cruel. It would only have taken another straw to have broken my back then [and she knew this] but I was hit with a whole haystack. Things die in you at times like that.

      Although I didn't know it at the time I was never to get another home visit from my GP to boot - mysteriously, and again without the slightest warning, ending over half a decade of them? [covered elsewhere in the "Medical Correspondence" supplement]. Just like my wife - my GP's timing could not have been more cruel either - nor from a strictly professional point of view could it have been more medically inappropraite.

      So, I now had to largely fend for myself. This brought to an abrupt and very unpleasant end, lasting many long and extremely harrowing months [see previous sections], what little [but very precious] 'recreational' activity time I had occassionally enjoyed previously. Life became an unending struggle for basic survival against the devasting fatigue and chemical poisoning of severe M.E./MCS. I knew that, as things were, I simply wasn't going to make it.

      As night after night slowly passed with each new one more 'unbelievable' and poisonous than the one before it I eventually reached the point where is seemed humanly impossile to carry on - but somehow I did - several times over. Then I reached the point where I knew that it really was physically impossible for me to carry on - not psychologically or emotionally impossible, though it was exceedingly difficult on those levels too - but simply physically impossible to go on enduring the physiological burden that was being chemically imposed on me - freezing winters night after freezing winters night.

      Glasgow's 15th Para had taken me to this kind of multi-level "outer limits" place before - many times. After hitting a brick-wall physically speaking it often truly seems like it is utterly impossible to go on - but many times, if you really dig deep, and push real hard on the evelope of your limitations, you do find that you can indeed "go on" - at least for another bit. After going through this very ardous loop several times however you sooner of later hit the final "Brick Wall" that is simply your personal limit.

      This a rare and very special place to be. Most people will never encounter it in the course of their entire lives. Its a place where your full present physical potential has finally been realized and where every single last bit of your physical, emotional, and mental strength is just no longer enough to keep you upright and going forward. Where every subsequent and agonising step forward from that point on virtually explodes with the potential of immanent collapse. It is only sheer willpower that holds you up here - but finally, even with your will still screaming your reeling body forward, utter multi-level exhaustion just floods over you like a tidal wave and you plumet face down into the mud like you were pole axed, gasping, cursing, and puking - with your heart pounding fit to burst. Then you just "Know" that unlike all the other previous collapses - this time you have finally endeavoured to exceed the outer limits of your actual abilites. Everything in you "Knows" that there will be no getting back up from this one - not for quite a while that is.

      I reached that physical "outer limits" point the night before I phoned my GP. In fact for periods I think I exceeded it - driven beyond those natural "outer limits" of the body by artificial chemical means. The weather had been producing sub-zero temperatures regularly for over a week beforehand and, in addition to being chemically poisoned by some item of bedding kit that, for a while, eluded identification, I was also being badly poisoned in some way by the small two bar electric fire that I had to run on full to stop from quite literally freezing to death [see "The 'Unbelievable' Crisis" section]. I just simply "Knew", with the exact same ceritude as I "Knew" in 15th Para, that my body could take no more; that I wouldn't make it through one more night like the previous one. So, seeing no other way out an impossible situation I phoned my local surgey and asked for an emergency home visit.

      I didn't get it though. What I got instead was a brief telephone conversation with my GP. I told him of the seriousness of my present situation and the circumstances leading up to it - but he either could not or would not help. I told him clearly that if I had to go through another night like the previous one then I would probably be dead by morning. He condescendingly 'reassured' me that I would still be alive the next day - and I blurted back something like "yeah, but only because I would probably manage to somehow crawl into the garden for fresh air on my hand and knees if necessary" - but he still had no intention of coming out to see me. Realizing that he was going to leave me to the tender mercies of my intolerable situation I finally asked in desparation to be hospitalized - just to give me some kind of a fighting chance - but this he refused point blank to do bringing our brief conversation to an abrupt end with a dissmissive "Phone me tomorrow and let me know how you are".

      As the phone line went dead I was left feeling as if I had just been handed a death sentence. The previous two weeks had been a nightmare and I was very weak and feeling dreadfully ill by then. I really didn't see how I could make it through another day let alone another night like the previous one. As a strange mixture of anger and despair washed through me I remember thinking "You've probably just killed me you ignorant, arrogant bastard".

      Night finally came. I hadn't managed to eat very much and was really on my last legs in all sorts of ways. As I made my slow and difficult way over the back garden to my shed to put the electric fire on for a good pre-heat before shed-bed time proper I was gobsmacked by the change in the outside temperature - it was very mild! Strangely mild in fact for January. For me it just was like a wee miracle. I knew I wouldn't have to put on both the electric bars of my small fire. I could probably get away with just the one all night long and, additionally, may even find it possible to put that off for an odd hour or so here and there throughout the night! I felt like a condemned man who had just been pardoned at the eleventh hour. I "Knew" not only that I could make it but that I probably would make it - as long as the mild weather held - and it did. For several nights in a trot in fact - during which I managed to rally enough to weather the worst of that particularly bad crisis.

      All sense of good will that I had left for my GP died that day however - and his behaviour towards me since has only served to underline that. I dont know how he personally manages to square that particular circle to his own satisfaction but I do know that regardless of how he actully manages it - that the foundation of his methodology must ultimately be bullshit. Becuase his truth emanates out of a long series of intangible "ifs", "buts" and "maybees" while my truth emanates out of blatently obvious first hand living experience. Yet strangely his 'view' is considered to be the "Objective" one - while my 'view' [and the views of countless other MCS sufferers] is relegated to the largely worthless realm of the merely "Subjective".

      My oh my! How scientific! And without so much as a "by-your-leave" dangerous and potentially lethal bullshit is unquestioningly elevated to the lofty heights of sound medical opinion. Well pardon my french - but fuck that!

Ref: Med-14a.
Photocopy 1 of 3.
View entire"Easy Read" version here.

Ref: Med-14b
Photocopy 2 of 3.
View entire"Easy Read" version here.

Ref: Med-14c.
Photocopy 3 of 3.
View entire"Easy Read" version here.

      I have spent much more time and effort on this supplement that any other to date because it represents a very important crossroads on my journey through MCS. Almost everything that is currently wrong with our with our modern medical paradigm is signposted here. Hence I have deemed the extra effort worthwhile despite extremely limited resources in terms of health - for my MCS nightmare continues even as I write.

      Apart from their obvious content what all my letters, and indeed Satori-5 itself, are demonstrably saying between the lines is that I am not afraid to write everything that I have to say down for all to see. The written word persists in time and sooner or later Truth will catch you out and drag you down if it is not in your words to begin with. I have no fear of that whatsoever - hence my willingness not only to write everything down but to put it all into the public domain here at Satoir-5 - and later, when I have fully and finally put my entire case here first, to the national press also - if they will have me.

      Unlike my GP I do not have impressive qualifications in medicine. Nor, like my GP, does my word or opinion enjoy spontaneous and largely unquestioned respect. Neither do I have the positive blood test results to substantiate the reality of this new modern plague called MCS from which I suffer to a truly harrowing extent. But what I do have on my side - is Truth.

      When you have Truth on your side - and know that you have it - then you don't care how powerful the 'opposition' is, or seems to be, whether that 'opposition' be a GP or a Berlin Wall, because you know that sooner or later it is "gonna go down" - and that Truth is gonna win out. When you have Truth on your side then your words have the "Ring of Truth" about them - and most people have an ear for that. There is an unmistakeable 'something' to Truth that, when encountering it, despite anything and everything to the contrary it just goes straight through you, and seems to sort of resonate in your heart somewhere, sometimes even despite yourself.

      In retrospect the "Ring of Truth" is often found to have had a quiet and gentle authority that just seemed to emerge clearly - and unbeckoned - above all the noisy competing elements of any contentious issue where 'concrete' proof one way or the other was simply not available. Some people call it a "gut instinct" - and sometimes it is all we have to go on.

      It is much simpler for me because I know that I have Truth on my side. I just hope and pray however that I can somehow find the right words to help you hear something of that special sort of 'ringing' - right here between the lines, at Satori-5.

      Meantime, once again...