What to do about spasticity?

We're only as good as our homemade maps

“So, they’re likely gonna cast him.
For six weeks.
Cast both ankles.”

”Whoa, really?
What is that about?”

”To try to get his spasticity to calm down.
And give him more range in his ankle, cause he’s like negative degrees in his ankle rather than…”

"Mhm”

”… or maybe I’m saying that the wrong way,
but he can’t fully flex…”

“Mm”

“… so they’re gonna cast it to try to get his muscles to chill.
And I don’t know what that will mean, in terms of like—”

“When are they doing it?”
“I don’t have a date yet.”
“Okay.”
“It’ll probably be a while, because everything takes forever.”

I pause.
I’m processing.
Casts mean no movement, no walking for six weeks?
I can’t form a response.
I say, “I feel like I might have more to say about that, but I don’t know what yet.”

She laughs. “Okay.”

“So I’ll get back to you…”
“You know, it’s—”
“… not that you’re asking for my opinion…”
“Well—”
“… but I’m interested to talk more about it.”

“Yeah, so I’ve learned the typical order of operations for kids with CP is,
They do this casting, see what muscles they can get to turn off and function correctly.
And then if that works, we start retraining everything.
If it works a little bit or doesn’t work, then we do botox.
And then after that, we would do surgery.”

“Okay, got it.”
This word surgery registers somewhere.
Scary.

“So…
Trying to lengthen tendons, I guess.
So…
I feel very confident that one or both, the casting or the botox, would work really well for him.
And I think then, after he gets out of his cast, if you do an intensive to retrain muscles, don’t you think that would be—”

“That seems like a good idea, for sure.”
But I’m far away.
In my fear, or whatever response I’m having—to the casts, the botox, the spectre of surgery—I’ve turned my attention away from her.
Away from our conversation.
More towards her son in my arms on the table.

“Or like, we do botox and then we do an intensive, so the cells and nerves remember how to function in that way.”

“Totally.”
Totally, but I don’t mean it, and in fact, I don’t speak anymore.

I didn’t register my freeze while it was happening, but now when I watch the video I see myself frozen, retreated inside.

I focus on the movements with the boy.

The lesson proceeds.
But later I notice her on her phone, not paying attention to the lesson.
I feel slightly annoyed.
She’s not really here, I think.

But she didn’t leave first.
It was me who turned away in fear.
I dropped the connection with her.

She was sharing information about herself, her understanding of the treatment decisions in front of her.
And it touched some blindspot in me, and I left the conversation first.

---

Flawed thinking machine

“If we look at ourselves, we’re set up to be these little Darwinian survivors.
We’re given this really cool sensory apparatus, a brain, and means to move around.
All to help us propagate the species.
But the intersection between our perceptions and understanding, and what’s actually true are pretty small and pretty occasional.
There’s a whole bunch of stuff out there that is beyond our grasp.

So, if you have any sense of that, then a kind of ritual humility would be the right stance.
I mean, imagine if somebody saw in all the wrong colors and all the shapes that he saw were incorrect.
And all of his understandings were messed up.
That person would be wise to be a little humble, because the data’s coming in, and he’s messing it up.
Essentially, I think that’s what human beings are doing in our little, sweet, pathetic way.
[taking in data.
messing it up.]

So, if you are that kind of flawed thinking machine, and you see another flawed thinking machine, it would seem almost crazy and irrational to start judging and fighting that person.
You might more reasonably say, oh, wow, you too.”

— George Saunders¹

---

Our brains are homemade maps of the universe

In Feldenkrais circles people often use the slogan “the map is not the territory” to mean, the way we picture our muscles and bones (our self-image) isn’t necessarily accurate.

So I always enjoy finding a variant of this aphorism out in the wild.
Last week I heard one from Liv Boeree, a professional poker player turned YouTuber.
I like how her version weaves the brain and universe into the metaphor:

“Yes… when I first learned about rationality, I read everything on Less Wrong.
That’s an incredible resource for learning about it.
It breaks down how you get your brain (which is like the map) to match the actual territory (which is the universe) as accurately as possible.”

— Liv Boeree²

So that’s basically THE question.
How do we get our brains to map the actual territory of the universe as accurately as possible?

For me the answer is Feldenkrais lessons.
We get our brains to map the actual territory of the universe as accurately as possible by getting our brain to tell our muscles to take support from the deep, skeletal self.
And we do it through movement variations.

---

Spasticity is a product of flawed thinking machines

Spasticity is a solution for a system that doesn’t feel safe moving.

The over-contraction of the muscles is controlled by some unseen part of the brain that (more or less accurately) predicts danger.
”If we’re going to fall, let’s at least make all this rigid, so it will be harder to break.”

The boy doesn’t use the ankle well because the current map only shows how to protect.
And that’s because of his brain injury and a subsequent series of defensive workarounds that bypass unsafe parts of the territory.

So the question again, How do we get his brain to more accurately map the actual territory?

We know it’s theoretically possible to map it differently.
He has a hip joint.
He has a knee joint.
He has an ankle joint and 26 bones in his foot.
And he has a brain that can update itself, even if it’s more challenging for him than others.

How do we go through the territory between his brain and his leg so he feels safe enough to do the updates?
So all the functional elements can show up more accurately in his self-image.
So instead of an undifferentiated spasticity to protect against threat, he feels safe enough to feel something new.

Do we put the ankle in a cast?
Maybe it will be like an etch-a-sketch turned upside down and shaken.
Maybe the spasticity will disappear during six weeks of unconditional freeze, and he can start the mapping afresh, without the inaccurate impressions from before?

But I don’t think it works like that.

---

My own spasticity

But this is where I run into my own spasticity.
In my conversation with his mom.
I never said it outloud.
“I don’t think it works like that.”
Instead I froze and started misusing myself.

“I don’t think it works like that,” but I didn’t feel safe speaking openly with the mom about my intuition.

Instead of safety, I felt like an imposter.
Who am I to say?
Where am I on the social map?
I’m not a doctor.
I don’t provide medical treatment.

True, I work on the assumption that learning and neuroplasticity are real and practicable.
And movement’s a good way to do it.
But what authority do I have?

Maybe we could call this my spastic self-regard.
(Or is it appropriate humility?)

But how can I best serve these two humans?

How do I feel safer and more potent again?
At least safe enough so next time I encounter this blurry spot on my map, maybe I could try something different.

---

Today is another lesson.
Hopefully this writing helped me.
Now that I’ve explored this territory from a few angles, maybe I’ll be able to talk with her more openly.
Who knows what territory might open up in our conversation?

The territory isn’t just inside him or me or her.
The territory is also fundamentally out there, in between us.
We talk to each other, scare each other, impress each other, influence each other.

Sometimes I retreat inside myself.
Then I write a little and hopefully come back out.

We’re all constantly remaking our homemade maps of the universe.
Whether we’re getting more or less accurate as we go along, we can always change our response.
Hopefully we get more accurate.

1. From The Ezra Klein Show: What It Means to be Kind in a Cruel World, Feb 19, 2021

2. From The Tim Ferriss Show: #761: General Stanley McChrystal and Liv Boeree, Aug 7, 2024