Monday, July 27, 2020

MS: Think Outside the Box

Think Outside the Box

HERO:

The word hero is an acronym that means, Help Everyone, Respect Others. You show respect by giving your time, your talent, your treasure, and most importantly, your tenacity. Never quit until we find the cure for MS. Thank you for coming, each of you is my hero.

The current dialog on MS has two principal author perspectives. The clinical view and the MSer self-view, or the "them" or the "me" perspective. When I talk about MS From the Insider-Out, I try to have the "us" perspective.  I just look at MS magazines, the principal authors were from the clinical view. Sometimes, the magazine will have an MSer personal story as the me-too story.  The them pronoun can be a logical context syllogism when referring to people with MS as the object of the article. Them, you, us and me are just perspectives of the MS box. The clinical views, them and you, see the MS box from the outside. The MSer views, us and me, is from inside looking to see out. The MS box does not have walls, rather, the clinical perspective is looking at a pool of water, and MSer perspective is living in the pool. The water is not water, it is MS.

The idea of "MS From the Inside-Out" is different than other dialogs. It is a cross between the clinical and the personal.  

Before MS forced me into disability, a big part of my career was working on international standards for electrical engineering. The job was to architect information models. Everybody is an information molder. Every profession has sets of information models that become the rules of the job. An MD diagnosis of illness. A CPA reconciles charts of accounts. Parents, children, artist, CEO, researcher, pastor, politician, gas station attendant, hermits, blue-collar, white-collar, gray-collar, everybody operates within tribe information models. Characteristics, personality, craft, relationships, and awareness emit from information models.  This email is an information model.

Think of “MS From the Inside-Out” as the middle-ground information architecture of MS life.

Here is a challenging information model question I asked many doctors and others, some of whom were at the meeting.
a. What not is fatigue is ___________?
b. What is not fatigue is ___________?

These are information architect style questions. 

The answer for a. is the opposite. 

The answer for b. is a description. 

My Inside-Out journey began with another question, “What did MS steal from me?” While looking for what MS stole, I discovered the MS thief left fatigue tracks. You may think everybody knows MS causes fatigue. That is true, the difference is my discovery personified MS as thief and fatigue is evidence not a symptom.
The challenge question makes a case statement where the fatigue evidence may find what the thief stole..

All the "pros" answered with descriptions of fatigue. Never the opposite.

A survey using the challenge questions. While not necessary, add one more question.

c. What is your connection to MS. Answer One or more.
___MSer.         How long since diagnosis? ______
___Care giver. How long providing care? __________
___ Medical doctor.
___ Ph.D. not medical.
___ Medical or Ph.D. staff
___ Therapy. What type? ________
___ Community Provider?  What type ________
___ Trainer. What type? _______
___ MS Support Organization.
___ Other connection. ___________
___ No connection.

As an experiment, read the InfoMS "Focusing on Fatigue"  to look for an answer to the challenge question.

I did find an answer. I am a fan of letting others seek their answers. My answer took me two years working on and off to find.

CPA Hint. What not is a net asset is ________
               What is not a net asset is  ________
               😀The answer is not a not for profit

The MS Society Communications Editor and some Society staff rejected MS From the Inside Out. Not everyone is in favor of a new MS box. 

A box has 4 observer perspectives. 
 - The outside perspective sees the box. 
 - The inside perspective sees the box. 
 - The outside-in perspective is a guess about what is on the inside. 
  - The inside-out perspective can see both sides. 

Hence, the expression, thinking outside box. Some people think MSers belong in a box. Open a box the lid to discover a music box.


In 1989, at 40, I was diagnosed with MS. I worked as an advisory engineer at IBM. Then in 1995, MS forced me to surrender my career. In 2005, I started to change my relationship with MS. The process took a few years, eventually, I invented a training program called Connection Toning. All of my MS education was a clinical perspective. (Most of the Brain Hearth  program was from the clinician perspective.) This perspective is absolutely necessary. As time passed, I realized as an MSer, I have a different perspective. I called my perspective, "MS From the Inside Out" and the clinical perspective, "MS From the Outside In."

However, both perspectives are about MS.  I needed a model that includes both. This blog explains:


The Outside-In MS dialog is lesion, inflammation, and scar.  However, I know something is wrong before going to a neurologist. I gave that knowledge a name, irritation. I know the lesion will cause neuro-psych damage I called stigma.  I named the Inside-Out dialog lesion, irritation, and stigma.














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