What Do You Do When Your "Want to" Won't Work?

Last week, I relaunched the Neurosparkler Newsletter after a year with no sends and finally had momentum to build the Bird Brain Sanctuary.

All the pieces are in place.

I have never been more ready.

I sat down Tuesday morning determined to be diligent and finally “get caught up” on the past seven years of “I’ll think about that tomorrows.”

Tuesday night, I got a call that my dad was having another stroke.

When I arrived, his right arm was completely paralyzed and his face was drooping.

He was coherent, but confused.And he was not dying so far as we could tell.

Every few minutes, he would pick up his useless arm and as it flopped back down he would say “What in the world?”

Completely unaware that while he was pondering the quandary of his rubber chicken arm, I was pondering whether this was IT or just the next “what if”?

“Do Not Resuscitate/Allow Natural Death” are choices on a POLST form but some questions can’t be answered in a check box or in black and white,

Daddy made his end of life decisions decades ago and they have never changed. We all know what to do when he’s actually dead or dying.

Once again, this wasn’t IT.

EMS came.

Even before they gave him the clot-buster in the ER, he began to regain some movement in his right arm.

Short-term memory loss and episodic loss of awareness can sometimes provide a strange kind of protection from trauma. The CT scans and MRI revealed that he has had so many little strokes that his scans look like Swiss cheese.

Apparently the message hasn’t made it from his brain to his heart.

Daddy doesn’t remember playing with his completely paralyzed arm like it was a rubber chicken or how when they transferred him onto the stretcher, it flopped out from under the blanket like a scene from Weekend at Bernie’s.

He doesn’t remember my terror because he never saw it.

He doesn’t know the decisions I was making just like he doesn’t remember the dozens of other times I have had to ask: “Is this the It that is IT?”

Or is it just another Tuesday?

So back to the story…Today is Friday.

He is home from the hospital with use of his right arm and the remaining deficits in his right hand will require intensive rehabilitation as his brain works to recover and compensate for the neural pathways affected by this new stroke.

Every little while, he unconsciously tries to use his hand the way we normally expect a hand to work.

It doesn’t.

And every little while, he says:

“What the heck, Paige? My right hand’s not working.”

And I say:

“Yes, sir. You had a stroke.”

Then I remind him that three days ago, his entire arm was paralyzed.

And he says:

“Oh yeah. That’s right.”

The moral of the story is: Never Bet Against Bill LeFevre…or you will lose.

He recognizes the deficit, but he doesn’t remember the baseline.

And once again, while trying to explain something to Daddy, I heard myself saying something I needed to hear:

Daddy is comparing today’s hand to the hand he had before the stroke.

Not this stroke, but the one that happened three years ago that changed what it was into what it is.

Of course today’s hand looks broken to eyes that still hold the throttle of the airplane while the same gestalt plays in his mind’s eye 59 years later. He remembers the shape of his life but not the details of his present.

Of course his weakened hand is the wrong baseline.

Tuesday night, his arm couldn’t move.

Against that baseline? The thumb that won’t quite cooperate is practically miraculous.

And suddenly it hit me:

How often do we do exactly the same thing to ourselves? Or is it just me?

We compare what we can do today against what we believe we should be able to do.

Not against where we actually started, what our brains and bodies are currently carrying, or the invisible energy required simply to maintain equilibrium.

Against should.

And then we add one more tiny word.

Just.

I have become increasingly aware of how harmful those two seemingly innocuous words can be to brains that work differently.

You should just try harder. Because obviously, if you wanted to, you would.

You should just make a schedule, use a planner, get a coach, download an app but not too many or for too long because otherwise you are overthinking it, procrastinating, and building a new doom pile of forgotten and failed attempts to Just Do It.

We know what our limitations are globally.

We know what our capabilities are currently.

We know the types and amount of energy we are expending at any given moment to maintain a delicate fuck allocation equilibrium that is invisible to everyone else because we always just do what comes next.

They can’t see what all of the little its cost us, they see what we manage to hold It all together and assume we can simply keep doing what we’ve always done because we make IT look easy.

Because usually?

We do just do it.

We get shit done.

We always do. Until we can’t. And then somebody whose voice sounds like my own says:

Have you tried just trying harder?

Imagine saying that to Daddy.

“You should just try harder to just move your thumb.”

He knows what he wants his thumb to do.

His thumb knows how to move.

His muscles are capable of moving it.

But somewhere between the idea of the movement and the coordinated execution of the movement, something isn’t connecting the way it did Tuesday. Before the stroke that led to the call.

Telling him to try harder doesn’t repair that connection.

It isn’t motivational.

It isn’t helpful.

If you don’t understand why he can’t do the thing you’re asking him to do, saying he Just Should isn’t just rude.

It’s mean.

It’s cruel.

It’s ignorant.

This week, I looked at an old familiar word and it made me look at my own life differently.

Dyspraxia is not one single inability.

Broadly, praxis is the brain’s ability to conceive, organize, sequence, and execute purposeful action. Problems can occur at different points in that process and for different reasons.

After a stroke, a person can develop acquired apraxia: the brain knows the intended action and the body may retain the strength necessary to perform it, but the neurological machinery required to organize or execute that learned movement has been disrupted.

There are different forms of dyspraxia.

Someone may struggle to perform a requested gesture like wave your hand or lift your arm even though they understand the request. Someone else may have difficulty sequencing the individual actions required to complete a larger task like translating 18 million words into a weekly newsletter and backlog of blogs.

And both of these someones may know perfectly well what they intend to accomplish while being unable to reliably translate that intention into organized action.

Ideational dyspraxia describes a disruption at the level of conceptualizing, organizing, or sequencing purposeful actions.

From the outside, ideational dyspraxia can look an awful lot like what gets casually labeled executive dysfunction and criticized in Neurosparklers as laziness and lack of motivation.

So the available lexicon assumes the solution is executive:

Make a list. Create a deadline. Prioritize. Trick your brain into urgency.

You should just break IT into smaller its and just do one thing at a time enough times in a row until It is finished.

Neurosparkle is what happens when the problem isn’t the knowing that a sequence is required?

Neurosparkle is what happens when the breakdown is in reliably converting the fully formed WHAT into the sequential HOW required to make it exist outside your brain?

I have approximately 18 million words in an Obsidian vault and more than 1,000 unpublished draft posts and they all say it/It/IT and it and all of IT.

Quite the opposite.

Recognizing how I know exactly what I want to say

and

here is the published post in your inbox on Saturday morning.

For years, that canyon has been perceived, including by me, through words like procrastination, inconsistency, executive dysfunction, lack of discipline, perfectionism and distraction.

Words that quietly contain a judgment:

You COULD do this if you WOULD just try harder to JUST DO IT.

Thanks, Nike, for the inspo. But if I could have done it, I already would have.

This week, I watched a man repeatedly discover that his hand would not execute an instruction his brain believed should be effortless.

And I would never dream of judging him for it. Or blaming him. Or shaming him.

Instead, I kept reminding him of the baseline.

Daddy, three days ago your whole arm was paralyzed. Look what your brain can do today.

Then I heard myself.

Oh yeah.

Hey Neurosparkler, Look what your brain can do today.

Look at how many times you have shown up and gotten shit done when you would have preferred to sit in your Daddy’s lap and have him comfort me.

Tuesday morning, I was going to get caught up.

My plan for the week was hijacked by something that mattered more.

I don’t need to manufacture a productivity lesson out of that or a postmortem of what went wrong.

And always:

“I don’t know what’s going to happen next and there’s not a damn thing I can do about it” is the only accurate answer available.

So this week, I’m asking myself something different. And maybe you need to ask yourself, too:

It is frustrating when other people’s expectations aren’t aligned with our actual capabilities.

But it becomes debilitating when the person saying:

“You should just…”

is us.

May you choose to see what was always there,

Auntie Paige

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