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.
