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Waar het mij om gaat:
Het meest schokkende feit
 



"Het meest schokkende feit"
heb ik de afgelopen 20 jaar vele honderden keren aan vele honderden burocraten, artsen en Nederlandse medemensen uitgelegd - of althans: ik heb dat even zovele malen geprobeerd uit te leggen, maar - enige uitzonderingen daargelaten - het succes van al die verschillende persoonlijke en schriftelijke pogingen tot uitleg was hoogst beperkt.

Dit is op zichzelf een zeer interessant feit, dat het een en ander of mijzelf en mijn Nederlandse medemens duidelijk maakt - voor wie dergelijke waarheden onder ogen durft te zien. Ik ga daar op verschillende plaatsen in het Nederlands op in, zoals maar citeer hier maar twee recente pogingen het in het Engels uit te leggen, aan twee mensen die het inderdaad wel begrepen.

De eerste is een Engelse professor filosofie ("Metaphysics and Logic") - en ik citeer dat deel van mijn mail dat "het meest schokkende feit" betreft - geel op rood, voor de slechte Nederlandse verstaander:

 

I will soon upload a new extensive website, given to philosophy, logic and ME/CFS, among other things - "ME" and "CFS" being common abbreviations for the disease my ex and I caught in January 1979, in the first year of our studies, and which we both still have, though it did not prevent either of us taking degrees (while preventing many other things).

Part of the last subject will be something autobiographical called "ME in Amsterdam", which is about my - and her - experiences with an unrecognized disease in a supposedly highly civilized, rich and free country and the cognitively and morally very interesting forced experiment of having to tell many people "I am in pain, I have little physical energy, I would like some help to cope" - and NOT getting it for all manner of purported reasons, that mostly came down to this being the most convenient course for those we asked.

Not all doctors and bureaucrats were equally obtuse, but most were. It was also cognitively and morally interesting to find after 10 years that hundreds of thousands in the world had had very similar experiences - and to note yet 10 years later that still little has improved for those with ME/CFS.


So in case my prose and my opinions differs from that of others, this is part if not all of the reason: I have very disheartening experiences with "I told you so" - and it was not a mere matter of being academically right or wrong about some rather abstract and speculative contention: I was simply telling the literal truth about the pain and lack of energy I myself and the woman I loved suffered from, and it is a very instructive experience, if not a pleasant one, that explains much about the worse fates of so many other individuals in this century in Europe: their fellows preferred not to care what happened to their fellows or preferred to actively persecute them for being - supposedly - different.

Speaking for myself, I often abbreviate my sort of philosophy to four words: "Be rational! Be reasonable!". It is humanly possible, but very difficult.

 


Vervolgens.
Tussen 1979 en 1989 dachten mijn ex en ik dat we een zeer zeldzame onbekende ziekte hadden - en tussen 1989 en 1999 bleek dat er vele honderdduizenden andere mensen (soms ook paren: zie G.C. Fisher: "Chronic Fatigue Syndrome") zeer soortgelijke ervaringen hebben moeten doorstaan met medici, hulpverleners, burocraten en medemensen.

In een zogeheten "Vrije Democratische Rechtsstaat" zou dat een zeer verbazend feit moeten zijn - maar dat is het helaas vrijwel alleen voor ME-patienten, hun huisartsen, en hun familie en vrienden. Ook is het zo dat sommige ME-patienten met familie en vrienden actie hebben ondernomen in Nederland en elders, met het doel de positie van mensen met ME te verbeteren.
Afgezien van een veel grotere naambekendheid van ME en een aanzienlijk makkelijker erkenning van het bestaan van ME als ziektebeeld (en niet als inbeelding of simulantie om de WAO op te lichten - wat in Nederland zonder twijfel OOK gebeurt, maar iemand als mij, immers een eenvoudig Nederlands Bijstands-Untermensch, onmogelijk is) is er weinig verbeterd aan het lot of de positie van de meeste ME-patienten.

En zoals gebruikelijk zijn er wel nogal wat zelfbenoemde ME-specialisten, hulpverleners, actievoersters (m/v) die allemaal Het Beste willen voor "de" ME-patient, en zichzelf, en zeer stellige oordelen hebben over hoe ME-patienten als ik zich zouden moeten opstellen.

Hier is een deel van een e-mail aan de beheerder van een Engelse site over ME - in dit geval een voormalig zeeman met ME:


Well then, here are a few deliberations about "ME in
Amsterdam", also related to the fact that when I disclosed my project to the people behind MEdium their angry reply was "What good would that do ME-patients?" - for whom they pretended to speak.

1. Me and ME:

I am ill now for nearly 21 years, and so is the woman whom I lived with when we both got ill. In those years I had very little help, also by those who pretend to speak for "ME-patients", and it has emerged that if I don't help myself others won't do so either - whatever I ask, plead or say.

Indeed, I am one of the few Dutchmen whose ME is officially admitted by all manner of institutions and doctors - which is a feat few or none others in my position have achieved, and which I did not achieve by kindly asking it, but by being better documented, better academically qualified, smarter and more persistent than those I was forced to deal with.

Likewise, unlike nearly everyone else who got ME, I succeeded in finishing my academic studies (brilliantly, and in spite of extra-ordinary opposition and difficulties), as indeed did the woman I lived with (who also has a very high IQ, and has a degree in psycho-physiology, having a similar distaste as I have for the softer and more non-mathematical fields in the so-called 'science of psychology').

Now I regarded myself as someone quite special in intellectual terms long before I fell ill, and I had an excellent career-prospect before I fell ill, where by "excellent career-prospect" I mean that I have talents which should have secured me a very succesful and highly remunerative career - always apart from debilitating illness and other things, such as my unpopular philosophical and moral opinions (that nearly all date also from long before I fell ill: the main thing my illness did was sharpen my pessimism about
most humans).

Most people with ME have no moral right to regard themselves as special in such terms, and if they did they probably have long since learned to discard their illusions.

2. Others and ME:

In my case and that of my ex ME is officially admitted as a diagnosis since 10 years, but I am hardly helped by that since I was a student when I fell ill, and had minimum income. I still have a minimum income, while it seems that most Dutchmen who have, believe they have, or pretend they have ME were working and thus keep receiving their full salary while ill, or a sizable part of it.

This also means that in Holland a complaint like ME is ideal for
malingerers, and that I suspect a sizable proportion of those who claim to have ME while receiving health-benefits in fact do NOT have ME but have a reputable excuse to go on long well-paid holidays or stop working in a job they don't like while keeping their earlier affluence through the Dutch system of health-benefits.

Also, "others with ME" are rarely in a position to help me or help
themselves, and in
Holland it seems that there are considerable problems, quarrels, fights etc. between various self-apppointed spokesmen and spokeswomen for "people with ME".

Since I met some highly disturbed such types in 1989, and since the main spokeswoman for "people with ME" in Holland is a former radical feminist, apparently also not of sound mind, I avoid these Dutch interest-groups like the plague (and indeed have also no problems or quarrels with them).

3. Me and others

I differ from all other people I have met in my life, and did so before falling ill. It is this difference that enabled me to achieve what I have achieved while I was ill, and that has prevented others from achieving something similar, whether or not they had ME.

One of my fundamental assumptions is that nearly all men and women are born followers: In the end they will do as some leader tells them, conform to peer-pressure, believe what ordinary people believe, and act like almost everybody else - also inside
Auschwitz or on the battlefield, and for fundamentally apish reasons.

I am not one of those, and neither were my parents. People like me go their own individual way, and are generally strong enough to defeat almost any individual opponent (or get killed in the fight). This makes people like me when intellectually gifted well-known academics or philosophers, and it also makes people like me when not theoretically brilliant or interested either political leaders, important criminals, or well-known dissidents.

In democratic
Europe, the majority of average men and women have let themselves be convinced by their hypocritically flattering elected leaders that each of them is as good as anybody else. Well, that's a misconception: Nearly everyone lacks the talents to be a great academic, a great criminal or a great leader - but there are a few who do (and not all of them are savoury individuals, and indeed nearly all of them are not what one would think of as sympathetic popular persons). Numerically, the proportion of such individuals is considerably less than 1 per 10.000. Also, these people are not only naturally creative, but naturally destructive: they go against the common norms without individual fears or doubts.

4. ME and human rights

What people with ME mostly do not seem to see or do not want to face is that they are each and all, when they really have the disease, discriminated in a very distasteful and inferior way, largely because such discrimination appeals to either the financial greed, the sadistic impulses or the simple egoistic convenience of not helping one in need of help by those who commit the discrimination.

I wrote earlier (to one of your countrymen):

"Part of the last subject will be something autobiographical called "ME in Amsterdam", which is about my - and her - experiences with an unrecognized disease in a supposedly highly civilized, rich and free country and the cognitively and morally very interesting forced experiment of having to tell many people "I am in pain, I have little physical energy, I would like some help to cope" - and not getting it for all manner of purported reasons, that mostly came down to this being the most convenient course for those we asked. Not all doctors and bureaucrats were equally obtuse, but most were. It was also cognitively and morally interesting to find after 10 years that hundreds of thousands in the world had had very similar experiences - and to note yet 10 years later that still little has improved for those with ME/CFS." It seems to me that all action about ME has achieved extra-ordinarily little in this crucial respect: It is still the case that health-professionals and bureaucrats are completely free to discriminate you when you have claims like mine, and it is still the case that the majority do. I believe such discrimination is inherent in the average human heart, that likewise discriminates Us from Them in all manner of cases, usually while pretending falsely that "everybody is as good as everybody else", and that no amount of preaching about prejudices will change that.

5. Me, ME and the Dutch law

While having ME my life has been twice three years very credibly threatened, first by a psychopathic neighbour in a student flat, and then by insane harddrugs dealers. In both cases I was repeatedly credibly threatened with murder; in both cases I and others went to the police; in both cases the police and every other official institution for three years refused to do anything whatsoever in the matter, except assure those who threatened me that they were completely free to do so. The reasons did could happen and continue happening for three years are my disease and poverty, which prevented me from finding or buying another place to live, and the Dutch endemic bureaucratic corruption and incompetence (few Dutchmen are prepared to face, for it does strike only those who cannot defend themselves, and facing Dutch corruption and incompetence are extra-ordinarily unpopular amongst the Dutch, who like to think of Holland as the closest thing to a divine utopia that is humanly possible, and enshrined this self-adulation in the term "the Polder-model of Democracy"). So I believe that I, in my position, have both the right and the duty to claim large damages. What "good this would do for patients with ME" is not my primary concern, though it is obvious that if I succeed it will do good to some patients with ME, viz. me. Whether my claims will be honoured during my life is doubtful, but that's no reason not to make them. Also, I think my story "ME in Amsterdam" simply is interesting for those concerned with Dutch civilization and Dutch history, while it also - when put on CD together with a lot of other material - may make me some money commercially. Also, I think I ought to explain what someone like me was forced to spend his twenty years between ages 30 and 50 on, that he could have spend so much better and so much more profitably, if only he had had a little help or if only his human rights had been maintained instead of willfully destroyed by corrupt or incompetent politicians and bureaucrats.
Unfortunately, I live in Holland where any politician or any bureaucrat is much sooner believed by the population they parasite on than a poor and ill person without status or power.


Regards,

Maarten.

 


Colofon:
first: 27 Oct 1999
last: 28 Oct 1999

Naschrift Augustus 2000: Wat mij overkwam in "Onze Democratische Rechtsstaat" is natuurlijk materiaal voor zeer interessante maar weinig optimistisch stemmende verklaringen van de gruwelen van de 20ste eeuw. Kortweg: wie zich geroepen voelt tot het zijn van een burocraat of bestuurder is gewoonlijk uit dat menselijke, morele en intellectuele hout gesneden dat nu juist geen macht over medemensen zou mogen krijgen.

 

Maartens@xs4all.nl