Extreme Complexity…But Also Extreme Wellness

One thing I have come to understand over the past 21 years is that systems are often built around:

• averages,

• categories,

• expected trajectories,

• standardized staffing assumptions,

• and generalized protocols.

But some people simply do not fit neatly into those structures.

Alex’s situation has never been “cookie cutter.”

The severity of his injuries.
The long-term survival.
The ventilator and diaphragm pacing interaction.
The autonomic involvement.
The cognitive outcome.
The level of wellness achieved.
The highly individualized stability patterns developed over decades.(through a lot of tough times)

All of it created realities many medical professionals had simply never encountered before.

So much of our journey has involved living in territory where:

• there was limited precedent,

• limited experiential knowledge,

• and very few truly comparable situations.

And when that happens, systems often try to apply standardized frameworks to realities that fundamentally are not standardized. 

I use the analogy often of trying to fit a square peg in a round hole. When the peg does not fit, instead of pulling back and rethinking to problem solve, they try to push harder. What can happen can be disastrous. Alex and I have experienced it. Thankfully we have both learned enough to be able to explain the risks and possible outcomes to try to avoid crisis. 

One phrase I recently used recently was:

“Extreme complexity, but also extreme wellness.”

And honestly, I think that combination can confuse systems sometimes.

Because systems often understand:

• extreme illness,
  or

• stable wellness,

more easily than they understand someone who is simultaneously:

• medically extreme,
  yet also

• deeply stable,

• engaged,

• alive,

• interactive,

• thriving within relationships,

• and functioning well inside a highly individualized environment carefully built over decades.

But that combination is exactly why continuity, pattern recognition, and individualized understanding became so critically important in Alex’s life.

Our perspective did not develop simply from theory, policy language, or isolated experiences.

It developed through more than two decades of watching:

• medicine,

• technology,

• systems,

• caregiving,

• survival,

• wellness,

• workforce realities,

• institutional assumptions,

• and human resilience

all interact in real time.

Because Alex’s situation was so atypical, we often found ourselves in spaces where:

• there were no clear templates,

• no established pathways,

• and no standard answers.

Which meant we had to:

• think,

• adapt,

• observe patterns,

• question assumptions,

• build individualized solutions long before many systems even recognized the need for them.

And most of all…pray!

And maybe that is part of why our advocacy sounds different.

It is not simply frustration.

It is years of witnessing what becomes possible when:

• extreme medical complexity,

• continuity,

• individualized understanding,

• determination,

• relationships,

• and meaningful life

come together. When you work with the body not against the body. When you treat someone who is injured as that…and help them to get better, stay healthy…and do not treat them as if they were sick. 

That combination is rare.

But it exists.

And sometimes the greatest challenge is that people do not always fit the categories systems were originally designed around.

One of my favorite phrases from the Bible is simply:

“But God.”

Because over and over again, we have watched situations that looked impossible on paper unfold very differently in real life.

Not because the complexity was not real. Not because it’s easy. Not because it didn’t take incredible effort. 

But because human beings, relationships, perseverance, wisdom, faith, and individualized understanding matter too.

God’s wisdom and direction sought and applied create beautiful things. 

#thegoalislife