Category Archives: MS symptom progression

Dangerous Knowledge

Mama-no-fun and I chilling on the couch.  She hates cameras and seems to know when the phone is about to be used as one.
Mama-no-fun and I chilling on the couch. She hates cameras and seems to know when the phone is about to be used as one.

Problem: We Have the Answer

Throughout the centuries, there have been various attempts to ban knowledge thought to be dangerous, but I posit the most truly dangerous knowledge is that which we stop questioning. The knowledge our experience reenforces is extremely hard to replace. Compare this with knowledge gained by efforts to prevent exposure to opposite views.

The Catholic Church had the Index Librum Prohibitorum, a list of works deemed heretical until 1966 when the pope abolished it. Still, subsequent Church leaders and an eventual pope remind us of the moral obligation to avoid books thought dangerous to our faith and morals. I have to admit I have looked at the list to try to find interesting reading in my contrary teenage years. Truth told, I was already familiar with many of the authors like Galileo, Darwin, Voltaire, etc., and I think my education better for my exposure to their work. Lest one think this desire to repress thoughts and literature are a Catholic thing, I note the more modern Satanic Verses which lead to a fatwa issued against Salmon Rushdie in 1989. I read the book solely to see what thoughts could merit death threats. Attempts to repress knowledge almost always seem to have the opposite effect. We all want to know who is the man behind the curtain.

However, there seems to be an ironic flip side. We seem to have an extremely hard time questioning “truths” which have seemed confirmed by experience. I was reading this week about chronic pain and the changes in our thoughts and behaviors which accompany it. In one study on dogs, when a group of dogs begins to believe nothing they do will change their pain, they stop trying to find ways to avoid it. Even when they are presented an opportunity to avoid the pain, they do not take advantage of it. They are no longer looking for the pain-free solution. http://psychology.about.com/od/lindex/f/earned-helplessness.htm

Personal/Micro Example:

In many ways, I find myself fighting against this loss of hope for a pain-free time. I no longer remember what it is to be without pain. I find myself behaving like the dogs no longer looking for a solution. In my defense, I have found things I still find extremely pleasurable, to the point where I do not wish to lose sensation even if it involves some continual pain.

I want the pain in my legs from a long run because it displaces the pain in my head and forearms. I want the pain because it means I am not numb. Finally, I want that pain because I can follow it with one of the most exquisite feelings I know. The moment after the run when I turn the cold water in the shower and it beats down on the back of my head. The cold shock spreads as the water goes down my shoulders and almost always makes me shudder as it hits my butt. Still, the ecstasy isn’t complete until I’ve shifted my shoulders to send some of the chilled water down my chest over that most sensitive spot just inside the hip bones. In trade for that first 30 seconds in the cold shower after the run, I will gladly overheat and tire my entire body.

Those positive physical sensations are probably all that separates me from those dogs in the experiments above who no longer look for ways to stop the pain. My experience is still giving me reason to hope and try, even as the length of time with pain a constant companion decreases my expectations for relief.

Societal/Macro Example:

I see a similar pattern emerging with our healthcare. We have been taught for generations about “American Exceptionalism.” Our strength comes because we are different, and surely this makes us better. There seems to be a perception amongst many the Affordable Care Act will make things worse for us as it hauls us toward similarity with foreign medical systems/markets. Outside of politically biased sources looking for reasons to deny Obama credit for anything, the most common things I see are concerns about change and being the outlier negative case in a system geared more towards helping “others.”  Still,  as a  guy who favors utilitarian beliefs of “greatest good for the greatest numbers,” I look at and follow publications like http://www.commonwealthfund.org/~/media/files/publications/fund-report/2…

I note the U.S. was last amongst the 11 countries studied in healthcare performance measures. This study included patients and physicians. Without a single payer system, it is not surprising that we rate low on access to care. What surprised me was our low rank on outcome, quality and efficiency measures as well. For this “great” system so many seem hell-bent on preserving, we pay more per person and more as a percentage of our total GDP than the other 10 countries studied.

I think it is natural to fear change if you think you are being well served, but are we as a nation being well served? Most of the quantitative research I have read says no. The problem is hearing this flies in the face of what we think we have experienced, example after example of our medical system as “American Exceptionalism.”  I even recognize I am one who has benefited from the differences between our healthcare and other healthcare systems as I doubt I could have been placed on Tysabri as quickly as I was in any other system.  So it would seem natural to believe we have it as good as it is possible to have.  Why change?  We have a natural tendency to imitate the dogs who believe nothing they do will improve their lot in life.  It seems a very natural problem, recognizing the possibility of “better” because it flies in the face of knowledge seemingly reenforced for years.

The hardest things in life are often difficult primarily because they involve risking a challenge to areas we think a strength or truth.  The most dangerous knowledge is that which we no longer question.

 

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Battle of Perspectives

Every day as I wake, it seems a battle between two perspectives. I resent having to fight the same fight daily about how I will view my MS today. I am all for self awareness and introspection. I just hate having to send my mind down the same tract to the same emotional boxing match.

In the dark trunks, on the near side is Mr. MonSter. He fights the long fight, rarely going down and never going out. He reminds us the way to boil a frog in a pot with no lid is to warm the water slowly. Towards this end, he opens with jabs of slowly increasing pain. He waits for opportunities to exploit faults in memory to cause cracks in confidence and temperament. If he hit with all of his tools at once, he would be giving up the isolating feeling he brings when nobody believe his opponent is worse than they usually are. He’s always up for the full bout, and his strength only increases as the rounds progress.

In the insanely bright, hurt your eyes green trunks in the far corner is Mr. Perseverance. His fighting style is characterized by a belief in what is done despite being tired one day is the best indicator of what will be possible tomorrow and all of tomorrows’ tomorrows. While many who have fought Mr. MonSter have fought to conserve spoons full of energy to either win in the later rounds or subsequent matches, Mr. Perseverance believe in punching onward taking what opening present themselves now. He is a risk taker with confidence he will be able to withstand any counter punches, and as his name implies, he rarely gives up even in the face of high costs in the near future. His belief in new methods of recovery and increases in fitness allow him to fight ever on.

Who wins? Lately, Mr. Perseverance has won by decision, but the water is slowly getting warmer. Will Mr. Perseverance ever concede one battle to take the time to hop to another pot or will the MonSter win out in the end?

Tune in next time…and the time after that….and the time after that….

In the words of an early 80’s television show, “Same bat channel, same bat time…”

O spotted this bird on a walk around Burba Lake at Ft. Meade.  I bet it wouldn't be trapped in a pot of boiling water with no lid.  Will Mr. Perspective learn from Ali to "float like a butterfly and sting like a bee?"
O spotted this bird on a walk around Burba Lake at Ft. Meade. I bet it wouldn’t be trapped in a pot of boiling water with no lid. Will Mr. Perspective learn from Ali to “float like a butterfly and sting like a bee?”

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