Category Archives: MS treatment

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.

 

Share

Fear Resistance

Beware!  MonSters wait behind the door to tomorrow!
Beware!
MonSters wait behind the door to tomorrow!

We all have fears, and for many of us they rule our day to day. For my son, they have ruled the night for weeks. In three weeks, there were only 2 nights when he did not tap me on the shoulder between 3:30 and 4:15 to report he had a nightmare. On those two nights, he woke A to play. He needed reassurance we all live. In the middle of the night, his worry blots out any ability to make good choices.

For A, it is a fear of not being accepted and loved which seems to concern her most. It’s a fear which seems aggravated by uncertainty in her ability to read emotions. I have lost count of the number of times I have heard, “Are you mad at me?” Yes, we get frustrated. Try as we might, I don’t think we understand or remember the built in pause her brain has when stressed. I keep trying to remember the built in pause might serve her well later. Taking the time to work through stressful situations is a good skill to cultivate, even if we don’t understand why she is still processing how to take off her shirt while the rest of the family waits for her to get dressed in her PJs. What is simple for one can be difficult for another, and the difficulty meeting the expectations of others is stressful. I feel that stress too.  The stress makes things more difficult, and suddenly fears of failure and the social reactions to such failure become a heavy burden making everything harder.

For me, I fear what my MS will do to me. Recently on patientslikeme.com there was a thread on why those of us taking Tysabri continue to do so in light of the risk to develop a brain infection (PML). Evidently, the risks increase over time on Tysabri, but I have never seen a risk greater than one in a hundred. Meanwhile, I know how I was progressing prior to Tysabri. I had terrible balance to the point of the only exercise I did was use a rowing machine (falling 6 inches is no big deal). I had terrible distracting headaches to the point of puking on the side of the road more than once. I had greatly decreased sense of touch below my belly button and some bladder issues which I now know is frequently a precursor of trouble walking in the future. At one point, I was hospitalized when I lost the ability to swallow. So while I fear PML, I fear my MS more.

I fear not being able to provide for my family. I fear not being the father and husband they deserve. So I take what risks I can to give me the best chance to stay “me” for as long as I can. For while I am taking tysabri, using the most aggressive treatment available, I fight the only way I can to retain any ability to help, to matter in some positive way.

I suppose we all fight our inner monsters. We do what seems most reasonable at the time whether it is seeking reassurance from our loved ones, freezing in thought and body, or acting aggressively to forestall the source of our fears. The hard part is maintaining the perspective from which we can discern when our actions are working against us, costing too much. For this, we (I) need the help of our trusted family to set us (me) straight.

Share