Managing Expectations, Bias and Blog

Perspectives of an engineer facing disability 

Firstly I welcome your opinions and perspective with all good intentions at heart. Other people's views of even the same situations or different ones have emotions which can ring echoes in others.

Generic meditation picture scraped as if skimming off what floats to the top of meditation sites. Many people find this calming, I find it prosaic. I would much rather be walking down the path.

This is not a self help blog, it is not written to talk about how the magic of mediation & diet du jour will cure everything, (it never does cure the difficult diseases).  This is a documentation of parts of the journey through disability and illness; the scenic spots, tools and pitfalls.  Both my husband and I come from engineering and science roles, we also have family with medical backgrounds.  So we are more familiar with journal articles & in depth research than we are with popular icons and media.  We enjoy reading, art & games as much as, when we were able, tramping, kayaking, surfing, fishing, scuba diving, and martial arts.  So while we can certainly sound bookish we enjoy the outdoors as much as anyone.  Our journey may be different in our approach to many people.  Often now highly divergent to most people as our minds are our castles which we build upon unlike the physical barriers we face now to build our own home. 

 

Cognitive Bias Codex too small to read without zooming in real close. Or check out Wikipedia's List 

I will admit that there will be some form of bias in what I write, especially as it is a personal subject. Everyone has a form of bias.  The human mind builds upon it, often even unconsciously, using it as a foundation.  I have included above a picture detailing some forms of cognitive bias which are used in how we view and perceive the world.  Common ones in science can be optimism bias, survivorship bias, Occam's razor, placebo & nocebo effects, confirmation bias, the black swan effect etc.  Some are more humorous like Murphy's Law, or Hanlon's razor "Never attribute to malice that which is adequately explained by stupidity".  None the less when approaching a personal story or research I find identifying my own bias aids in recognising the perspective from which I analyse the information.

 

"I'm a lumberjack and I'm ok, I sleep all night and I work all day. I cut down trees, I skip and jump, I like to press wild flowers, I put on women's clothing and hang around in bars" - Monty Pythons

Will I like this story?  When so far it has started from point of disability and looks like it is not getting out of it any time soon.  Well who knows.  My view is that while I am not depressed, many people see it as a depressing situation.  Let it never be said there can be no moments of humour & joy in such a situation to balance moments of anger, pain and grief.  Isn't that what many people on their paths face as well.  As I said this is a journey two lanterns take together as brightly burning stars.  If it serves to help or entertain others then that is a boon.  I rely on evidence based, scientific medical treatment, but many prefer to view chronic illness and diseases as something else.  My husband had to fight for his genetic diagnosis of FSHD muscular dystrophy as many untrained non medical opinions did not believe the muscle degeneration & issues were real.  He finally hit upon a doctor who did not judge him for how he dressed & looked like, this doctor & specialist referral got the genetic tests that confirmed diagnosis.  Hence it requires specialist medical knowledge and not opinion to diagnose complex medical issues.  Many family members with MS & other auto immune conditions were treated shamefully because it takes time to develop clear diagnostic tests and then for the patient to work through the system, (women prior would be tossed into mental institutions or ignored until it got too late to effectively treat).

We all perceive the world differently, for some it is turtles all the way down.

The following anecdote is told of William James.  After a lecture on cosmology and the structure of the solar system, James was accosted by a little old lady.

"Your theory that the sun is the centre of the solar system, and the earth is a ball which rotates around it has a very convincing ring to it, Mr. James, but it's wrong. I've got a better theory," said the little old lady.
"And what is that, madam?" inquired James politely.
"That we live on a crust of earth which is on the back of a giant turtle."
Not wishing to demolish this absurd little theory by bringing to bear the masses of scientific evidence he had at his command, James decided to gently dissuade his opponent by making her see some of the inadequacies of her position.
"If your theory is correct, madam," he asked, "what does this turtle stand on?"
"You're a very clever man, Mr. James, and that's a very good question," replied the little old lady, "but I have an answer to it. And it's this: The first turtle stands on the back of a second, far larger, turtle, who stands directly under him."
"But what does this second turtle stand on?" persisted James patiently.

To this, the little old lady crowed triumphantly,
"It's no use, Mr. James — it's turtles all the way down."