Monday, August 15, 2011

Our Truman Show

The thing I like about The Truman Show is what Truman accomplishes. Here it is for clarity:

All of the people in Truman's world
did everything in their power
to prevent him knowing something
and he found it out
by thinking and exploring.

To me, it is like the historical progress science makes against the contrary desires of authority. It is like the abused child learning that he or she is worth something as a human being. It is like our experience.

The invisible hammer

I got sick around 1970 (probably a few years earlier). For decades, doctors never told me whether there was a whole to the many signs, symptoms, and diseases. At best, they assumed they were unrelated to one another.1

Only after I had become 99% bedridden, with more diseases than most people would believe possible, for years, did I start to understand the politics in detail enough to trace it to how I had been treated.

I did not know what truths doctors and the public had not been told. I did not fully know what falsehoods they had been told. I felt the blows of a hammer that I could not see and could not name and whose wielder I could not know.

I think it's the same for our movement. We had to climb above the lies to even look around and know where we were. We had to trust reason and facts and not what we were told.

Ordinary things

I think there is something about ordinary things.

When Truman goes to a travel agency, there is a poster of an airplane struck by lightning, with the caption, "IT COULD HAPPEN TO YOU!"

It is not easy to question posters at travel agencies. Why would you think to do so? Posters are ordinary.


Now I want you to know the following. In a future post I will lay out the details for thoroughness, but I will not qualify anything. It means exactly what it says.

My disease does not exist in medical curricula.

It is not easy to question medical curricula (not even when serious diseases are absent from them). Why would you think to do so? Textbooks are ordinary.


The director character explains it concisely:

Christof, may I ask you, why do you think that uh, Truman has never come close to discovering the true nature of his world until now?
— Interviewer

We accept the reality of the world with which we're presented. It's as simple as that.
— Christof

Alone

For decades, doctors never told me whether there were other sufferers. When I asked, they deflected my question or said there were not any others. For decades I thought I was alone. I suspect that I'm not.

I think that millions of others still think they are alone.

As a movement, we are definitely not alone. See → this list of possibilities {HGRV pandemic} and also → here2.

We can tell them how to trace politics to their experiences. We can show them our scars and hand them provisions. They will tell us a few things. New friends become old friends.

This dome, it turns out, contains a formidable number of Trumans.

The dome

The hostile world we inhabit was not constructed for entertainment (and nobody would tune in). Most of the actors didn't even really know the plan.

In fact, it's easy to take cues by reading the atmosphere. Easy to get rewarded. Easy to follow orders (specifically: research funding, research criteria, diagnostic criteria, treatment guidelines, nomenclature, diagnostic and billing codes, insurance rules, practice rules, common habits, and textbooks) when those orders tell you exactly what you want to hear.

The consequences slide easily by. Averted eyes, meaningless words, suffering. Averted eyes, meaningless words, death.

Always it is as if everything were the way it is supposed to be.


Most of the dome was built in this banal way, but it was no less thorough than if it had been the physical hemisphere in that movie. We don't know all about it yet, but we know we are in that dome.

That datum is precious. It is not easy to question ordinary things. Truman was curious, but he did not question them until he had a reason. Then he thought and grew and became aware and exercised courage and took action.

Our goal

Our goal is science. Science is an emergency need because human beings are suffering and dying right now and science is the only way to stop that.

The life we live

The life we live is a Kafka nightmare made literal, death and suffering and pain and loss and indignity and limitation and waste, nothing like the bland TV-land in the movie.

But this Truman Show, our Truman Show, exists in reality. We know it, we can never stop knowing it, and we are sailing toward the edge of the dome with determination. Wind will gust. Lightning will strike. We will continue.

Samuel

Footnotes:

1

AIDS was the only remotely explanatory hypothesis that they offered and made any effort to rule out (to my knowledge). I had no risky behavior or blood transfusions, but my signs, symptoms, and diseases nevertheless frequently made them think of AIDS when things started getting worse. I don't have AIDS. I tested negative for HIV twice.

2

A list of misopathized diseases from another future post: IC, IBS, MCS, FM, chronic Lyme, serious fungal immune issues including infections that never go away, certain neuropathies including RSI, Gulf War disease, food allergy, circadian diseases, certain poisoning sequelae, autism, and others.

5 comments :

  1. I like the analogy to the Truman Show. The dome was designed to simulate a reality. It was designed so well that Truman never even knew he was in a dome until he was an adult with an adult life.

    The point being, it was designed.

    K

    ReplyDelete
  2. Sorry, Samuel, meant to add to that:

    The parallels you draw are really good!

    In our reality, there is an element of deliberation in the construction of the dome we inhabit, but the cement that maintains the dome is a large amount of banality. As you indicate, it wouldn't take large numbers of people to keep a secret.

    So...Deliberation created this dome. Ignorance and lassitude perpetuate it.

    ReplyDelete
  3. Samuel, I like what you have written. Your quietly indignant style is one of hypnotic persuasion when I'm sure your insides are screaming instead. How do "we" get the attention we deserve? Keep talking, keep working, keep demanding attention. Maybe. The wake up call has come for the patient population. For the ones we want to listen & act on this message, I fear they're in a Rip Van Winkle sleep-a-thon. How tragic. We cannot afford to give up hope. I suggest that maybe we have more control and power than we realize. The key is to consciously take back our power, not give it away. We cannot rely on others, especially those who choose not to listen.

    ReplyDelete
  4. Samuel, it is refreshing to read your well thought out and well written blogs. I am looking forward to more ......

    Karina

    ReplyDelete
  5. Khaly,

    I think the longer science is delayed, the more such questions will be raised. Delay is no longer in the interest of many denialists. They need to cut their losses.

    Sometimes I think we are searching for a self-sustaining viral trope. I really like the black hole one. Think how successful "iron curtain" was, for example. Fixes the idea in people's minds and gives them a phrase to stand for a complex idea.

    ===

    Cinda,

    "I suggest that maybe we have more control and power than we realize" -- I think that is exactly right. "We cannot rely on others..." -- also exactly right. There will never be a waiting period.

    IMO we need to impress on more mild sufferers just how sick they can get. Truthfully and mercilessly until they GET IT and put effort into advocacy instead of trying to sew a temporary pretend life out of rending scraps. They need to know in their bones that that is false economy. Do they want to be there for their grandchildren?

    ===

    Karina, thank you. :) I hope you will keep reading.

    ReplyDelete

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