Wednesday, January 14, 2015

Twisted Logic

I've been having a really difficult time with my sister for the last two years.  It finally culminated, at my therapist's urging, in cutting off all contact with her for my own piece of mind and general health.  Of course she is still giving my mother heartburn and information wends its way back around to me.
For some reason she doesn't think I want to get better.  I finally found out why, I'm not seeing the type of doctor that she approves of.  She doesn't like the fact that I'm being a "know it all" regarding my illness and doesn't agree with my treatment plan, not that she actually knows what it is. Sis wants me to travel six hours to see the "real" doctor in the Adirondacks because she "cured" herself of CFS and fibro with magnets and aura cleansing.  The world famous CFS doctor and the functional medicine doctor that are treating me that have been treating actual patients for decades obviously don't know what they are doing.  And because I choose to see them instead of her "real" doctor I obviously don't want to get better.

To take this at face value, I would never EVER hired her as a patient advocate.  She never researched my illness, never mind treatments (there are none).  She is taking this holistic doctor's word on her self diagnosis and treatment plan.  She doesn't understand that there are degrees of severity of the illness.  The doctor might well have had real CFS.  People that contract the mild form often go into remission after two years.  The doctor might have treated herself with her magnets etc for two years and POOF she is cured.  My sister really doesn't have a grip on the notion of correlation doesn't equal causation.  She doesn't know that both of my CFS treating docs told me that I was the worst case of CFS that either of them had treated, although via the internet I do personally know of patients that are worse than I am.

I looked into the "real" doctor to see what treatments she offered.  In the same paragraph she has EMF blocking plan along with a mega spectrum photon generator to re-energize your cells.  What the what!?!?!?  The photon generator is basically a lighted neon bulb that you rub on your body giving yourself a mild electric shock, i.e. it generates an EMF field and you are giving yourself an electric shock.  It even says to wear rubber gloves when using it to insulate yourself from shocks.  Talk about quackery.  And I'm supposed to hop in a car and drive six hours to see this shyster?

Never mind the hocky treatment, there is such a thing as respect for the patient, patient rights, etc.  Even if she had picked out the best CFS/ME doctors in the country she has no right to second guess me on my own treatment.  She definitely has no right to say that I don't want to get better just because I'm seeing doctors that she doesn't approve of.  She doesn't have a right to come up with her own treatment plan and then get angry when I refuse it.  This is all sorts of wrong.

However, to get at the core of this issue you have to realize that this is my sister's belief system.  She has swallowed the wishful thinking philosophy hook line and sinker.  That whole If You Just Have the Correct Thoughts Then Wonderful Things Will Manifest In Your Life thing is her core belief system.  Me and my illness flies in the face of that.  I'm not wishing hard enough.  I'm must not really want to get better because I'm still sick.  Chronic illness doesn't fit in neatly with this philosophy.  The patient must have done something wrong to manifest this illness.  They must have thought the wrong thoughts because health hasn't returned.  This is why I walked away from this philosophy years ago.  Something didn't quite sit right with me about it.  Sorry Wayne Dyer.  This leads to blaming the patient for becoming sick and staying sick because they obviously did something wrong.

Buddhism makes more sense to me.  Things change.  Things always change.  Life is impermanence.  We have been given this gift of a body and this life for a brief moment in time.  We are lucky when it works well and even lucky when it breaks.  Wait and things will change again.  Suffering comes from wanting.  Suffering comes from yearning.  Let go of wanting and suffering will end.

As you can see we have a huge chasm between our core belief systems and this underlies her comments.  If she accepts that I have a chronic illness then she has to change her belief system.  No one reacts well to a challenge to their core belief system.   It is the framework with which we understand the world and therefore sacred to a degree.  Some people can alter that framework after much thought and deliberation.  Others can not and will deny reality rather than change their beliefs.  I am coming to believe that Sis sits in the later camp.  Her beliefs are right: reality is wrong.

Because these comments are coming from her belief system they can't be argued with.  She has had a rough life and her belief system is holding her afloat right now.  All be it the wishful thinking isn't working for her either.  There will be no discussion or reasoning with her.  Sometimes all you can do is walk away.

Saturday, January 3, 2015

When Things Get Weird

It is a truly odd day when you realize that you are more successful financially than your siblings despite being fully disabled and the reason they act so weird towards you is that they are jealous of you.

I am so glad I decided to start doing financial planning 20 years ago and live my most productive years out of debt.  It meant that being disabled hasn't bankrupted my family and I get to live in relative comfort despite not being able to work.

I am one lucky person and I need to be more grateful for what I've managed to accomplish.