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On what is and what appears

Written by Huib, published Thursday November 12th, 2015

As an active observer of the different layers in the complex knowledge system called “Lyme”, I cannot help being amazed. Amazed by how different groups with different perspectives seem completely unable or unwilling to understand each other. So what happens if one looks at Lyme as a field of learning? A field in which many people claim to know the truth (or even Truth)?


Jacque Fresco claimed that “people cannot think in our present culture“. If he’s right, don’t think too much about that statement. Let’s be curious and use a systems approach to look at this fussy knowledge area and its groups of actors.

The easiest way to describe a complex social system is the traffic system. Even though all users of it will assume that they see the whole system, they cannot. Simply because they have a position in it, which dictates what they can and cannot see. Only communication based on appreciation and curiousness can broaden their horizons. Which requires stress reduction first.

The position in a system such as traffic is based on the experience of vulnerability versus distance. So to a mother on a bike, with three young children balancing to stay on top of her bike, the traffic situation on some crossroads appears very differently than to a lorry driver, who’s in a hurry to make his next deadline. Or again to the police officer, blowing his face red on his whistle to organize the mess. Or to a government official, staring at Excel sheets and real time graphs of the traffic in that whole city, making up new policy. He will never feel what happens if his policy doesn’t work the way he planned it. The mother will.

From within their own position or even group of people within the same position, everybody is right. And the Pavlov response to being right is to start convincing “others” that they are wrong. Look around in society to see the results of that way of communicating. I really liked Matt Kahn’s talk called “Too good to be true” on how (claiming to) being right subject kills off any chance of fruitful communication, by the way.

In a stable, closed (laboratory) environment factors might be so stable to one can claim to understand a causal relation between thing A and B. For example: if A happens then B (whatever). But what happens when too many factors come in play? When they interrelate? When emotion (or the lack of it) might color perception?

Because in another complex social system, called Lyme, the above dynamics plays out even more polarised. There is far too much stress. As an active observer, within and sometimes on the edge (one can never be outside a system, no matter how hard anyone tries to be “objective”), a couple of things puzzle me.

Doctor – patient communication

M., a lady who has been in bed for 21 of her 35 years on Earth, asked her doctor to do a Lyme test. Maybe to stop me from nagging her (sorry M…). For her, going anywhere is taking a lot of effort. Her position is vulnerable, since she feels bad, has a stake in the outcome of the test, does not want to allow herself false hope and has to wait one hour, because the doctor is behind on schedule. During that hour she nearly vomits in the waiting room and nearly faints twice. Time has a tendency to slow down, when the experience is of low quality, doesn’t it?

That is why she is probably called “patient”. She has no choice but to be patient. For 21 years. She is not even the mother in the traffic system, but the kid sitting on the back of the bike. No steering wheel, no control over what happens. The only control she does have is on the inside. She has learned, in all these years of being sick in bed, to somehow manage the quality of her inner live. Her social life is taking place on Facebook, where she actually inspires many people – including me – with beautiful pictures of her dog, her cat, a baby bird she rescued or with artful images of herself. For Shifting the Lyme Paradigm she inspired me to invent the “Sleeping Beauty Syndrome”.

To her doctor, M. is just one of the many people who pass by during a working day. An entry in his calendar, which was already too full at the start of the day. He does actually like her. She is never angry or challenging his position. But he is somehow insecure what he could do for her. Of course he cannot let her know that. She comes because he’s supposed to know what’s wrong with her. So how can he be honest? That would bring her down even more, he thinks. Although personally he is somehow convinced that she really is ill, no test has found found anything. He had thought of Lyme before, but M. did not remember having a tick bite. So what sense does it make to test her for it?

A thought hits the doctor. “What actually happened to that test of hers? It should have been back from England… I’ll ask the secretary”, he thinks. But he’s too busy and forgets. He does ponder on the latest scientific article on the phenomenon of “conversion”. According to that article people who never got over childhood trauma manage to converse their hurt into physical complaints. A tempting idea, because then it’s not his fault that he couln’t help her. “Next”, he calls out to the people in his waiting room. Three months later M. went back to her doctor. The assistants never sent her blood to England. So she has to be patient, again.

Another doctor called a colleague of mine. She tests for Lyme in a way that scientists discard as “bullshit”, although using more fancy names. The doctor told her that he knew his official tests were invalid and that he really suspected his wife to have Lyme. Regardless of his own testing results. He however cancelled the appointment the day before they would come. “I couldn’t stand my own confrontation if we’d find she has Lyme”, he said.

Lyme: the Tower of Babylon 3.0

I do not look on Lyme groups on Facebook too often. The main reason is that I get dizzy. Dizzy by the words that fly across the screen: CFS / ME (M.’s labels), LTT, ADHD, ADD, ALS, Alzheimer, etc etc etc. In another professional services area this would simply be called “jargon”. In the health market words like this either are a way to pinpoint why one cannot just get on with life (and sell solutions to that problem) or a (false?) sense of security.

A name has the tendency to make something real, doesn’t it? It suddenly IS something. That does a lot of things to people. It might give hope to better health, since why else would you want a word describing what’s wrong with you? It might provide you with a reason to try and explain to your friends and family why you don’t function the way they (and you yourself) expect you to. It might also sidetrack you from the actual reason of why you feel like shit and remain to do so, regardless how many labels are stuck onto you and how many pills are stuffed into you.

The more I see of this juggling with difficult names and abbreviations, the more I feel lost. For several reasons.

If I look at the three hundred pictures on the On Lyme FaceWall and click on them, I see three hundred live stories. On average, people claim it took them over twenty years to get a proper diagnose (or reason) why they had been ill that long: Lyme. Can they be sure? No. There is no valid tests. Yet. Can medical experts claim that’s all bullshit? No. There is no valid tests. Can the word Lyme provide another fake sense of security? Sure, it can. Especially since the standard treatment does not seem to work.

So what happened during these twenty years? Did all the doctors and therapists they went to just said “I don’t know what’s wrong with you”? Of course not. They have an idea what is causing what. They have solutions to sell. They have a mortgage to pay off. They have their identity to uphold. Their title to protect. Do you really think a professior of (whatever) Alzheimer would even be willing to look into the possiblity that Alzheimer is “just” one of the many face of Lyme Disease? Some may, many will not.

Within a health care system that is profitting from (ungoing) diseases, one can never know what is benificial. This means that, if indeed the answer to all the multiple symptoms were “Lyme”, some 15,000 misdiagnoses were given. That’s a lot of expensive words flying around. All conversion? Who knows? In the appendix of Shifting the Lyme Paradigm you can find a list of 369 “illnesses” that later proved to be Lyme. Proved? Nobody can know without a valid test anyway. Possible? Yes. If one takes into consideration that not only ticks spread the infection. Probable. Who really knows now?

So we may want to change our language from one in which things “are” to one in which they “appear” or are possible.

Back to Fresco

Fresco clarified his bold statement by giving two historical anecdotes: if you’d ask a headhunter (the original version, not the ones in dark business suits) if he was not sorry that he hunted twelve heads, he would reply: “Sure! My brother has 25.” And a Roman kid, who was taken by his father to the Colloseum to see Christens fed to the Lions, would ask: “please daddy, can I come next week to see more Christians being fed to the lions? I’ll be really good!” 

So in our version of the exactly same culture, we go to our doctor and ask “please doctor, I feel bad. Can you give me a name?”. That doctor swore an Oath to at least not do bad. But how can he know what good and bad is? Especially since he is conditioned into thinking he is supposed to give security. He is the expert, isn’t he? So his mortal sin would be to admit that he has no clue. Could you do that, when your calendar is filled with scared and ill people? Even if we would, we would be attacked by our own group. Ingroup thinking has a powerful mechanism to keep its members within the lines, as history has shown.

Back to the above anecdote. Was that doctor, who did not want his wife tested, bad? What is bad? Did he prioritise his own belief in the system that raised him to his position? Yes. Was he dishonest about it? No. Are we to judge? I doubt it and don’t see how I could be the judge fo his actions. Too many times I’ve seen people taking the decisions without knowing the consequences. Did they turn out alright? Mostly not, given their own definition of their problem. And that might be the problem.

If you look back to your own life: what did you most learn from? The things that went smootlhy or the things that upset you most? As an expert on experiential learning, I’d take an educated guess here: the latter.

So who knows what will happen with this doctor and his wife? We can only know if we remain curious. Which is the opposite of prejudice, which seems easily triggered in Lyme Lands. What is possible – and even probable – is that if this doctor loses his wife to Lyme, he will be in a different position in the “traffic system”. A trained doctor experiencing what vulnerablity means to him. Who knows what may come from that discovery?

An anecdote

Ghoup, tell them they’re STUPID!” This was how a Russian Ph.D in Physics tried to involve me into steering things the way he thought they had to go during a two day business simulation. This is also how Russians pronounce my name, by the way. It is actually one of my most fond memories of my time in Business Education.

“Sure”, I said and opened the door to the classroom, in which the rest of the group was being very busy playing their game. “YOU ARE STUPID” I shouted into the classroom. “Did it help?”, I then asked the shocked young Russian. The rest of the group just grinned at me in mild amusement (they got used to my style of “teaching” the few days before) and then went on being busy as usual. At the end of the week the young and future professor in Physics told me that was the experience he learned most from during the whole, intensive week.

Why? What I think he got was that intelligence has nothing to do with being succesful. Especially being succesful within a group or a set of groups. My guess is that all of these young people were intelligent (at least measured by their IQ). That did not make them work well together. Regardless of the fact that they actually spoke the same “language”, since they all prefered logical, factual and analytical thinking. So even in a small group of intelligent, alike thinking people, they found it hard to work together and create new knowledge that would help the group to progress as a whole (within the context a learning).

I don’t know about you, but I am sure I never changed my own outlook on things because other people shouted at me that I am stupid, not “awake” enough, a criminal or too chicken to look at the Real Science. Would you become interested to invest your attention and risk admitting that maybe you were wrong? People have the tendency to want to be right all their lives; even if that might cost them their lives or the lives of others, don’t they?

Thinking in Lyme Lands

In Lyme lands I see basically four different groups: Sufferers, Solvers, Investigators and Influencers. This may sounds simple, but even these four groups are diverse. Ingroup diversity leads to fighting. Patients fighting patients, because they don’t believe in their version of the Truth. Doctors figting doctors. And so on.

So we can leave the question of how these four of groups could work together alone for a while. They hardly know the others exist and even if they do, they regard the other groups through filters. One of the main filters is …. language.

Are you still confused, but on a much higher level now? If you want me to elaborate on this theme, let me know in the comments. This blog may have given you a glimpse of what being right about a truth does to communication between and in groups. How it’s blocking any real progress of knowledge.

In later parts I could think “out loud” about what happens if we reframe our language from “what is” towards “what appears, what is possible and what might be possible”.

I’d like to do that, because it helps me with my work. Understanding these dynamics and appreciating the drives behind them, will allow me to walk inbetween worlds and start throwing some life lines over the abysses in Lyme Lands, to whomever is willing to catch them. Lemme know.

Here is the link to Fresco’s 2010 speech in Eindhoven, at age 94. Worth all 20 minutes of your time!

If you know someone close to you who has, thinks she / he has or might have Lyme, get your Priceless copy of Shifting the Lyme Paradigm.

drs. Huib Kraaijeveld

In: Blog Philosophy Inspiration Lyme

"This book perfectly describes the plight of millions of patients, who suffer from chronic Lyme Disease in many countries all over the world."
Prof. Christian Perronne, France

"This book is a gift of truth and passion to humanity."
Mia Morales, Lyme patient, USA

"I received the book exactly on the day that I had decided to end my life. Huh?! Yep. I am 35 years old years and have been ill for 19 years. Now I know why: Lyme. Everyone should read this book!"
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Frans Vermeulen, journalist, the Netherlands

"In his crucial work on Lyme disease, dedicated social researcher Huib Kraaijeveld does not pretend to have all the answers, but guides us towards asking the upsetting and essential questions."
Prof. Cees Hamelink, professor Communication Sciences & Human Rights, the Netherlands

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Linda Graanoogst, journalist, the Netherlands

"Well, I am wiping my eyes and blowing my nose, while tears stream down my face. I guess that is a good sign. You hit the nail on the head claiming that Lyme survivors need 'understanding'. I would like my own partner to read this book."
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"What an awakening perspective! Huib has successfully set a quantum leap for understanding and managing Lyme disease by common people."
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Friend of someone with Lyme

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"Shifting the Paradigm of Lyme is not like any other book on Lyme that I have read. It appeals to a higher consciousness, and is analytical in an introspective way that is pleasant to read. This book is a friendly and warm reminder that no Lyme patient is ever alone."
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