Adverse Childhood Experiences 12: welcome to the dark

Welcome to the dark, everyone.

When you think about it, all the children in the world are adding at least one Adverse Childhood Experience score and possibly more, because of Covid-19. Some will add more than one: domestic violence is up with stress, addiction is up, behavioral health problems are up, some parents get sick and die, and then some children are starving.

From the CDC Ace website:

“Overview:Adverse Childhood Experiences (ACEs) are potentially traumatic events that occur in childhood. ACEs can include violence, abuse, and growing
up in a family with mental health or substance use problems. Toxic stress from ACEs can change brain development and affect how the body responds to
stress. ACEs are linked to chronic health problems, mental illness, and substance misuse in adulthood. However, ACEs can be prevented.”

Well, can they be prevented? Could Covid-19 be prevented? I question that one.

I have a slightly different viewpoint. I have an ACE Score of 5 and am not dead and don’t have heart disease. I spent quite a bit of time thinking about ACE scores and that it’s framed as kids’ brains are damaged.

I would argue that this is survival wiring. When I have a patient where I suspect a high ACE score, I bring it up, show them the CDC web site and say that I think of it as “crisis wiring” not “damaged”. I say, “You survived your childhood. Good job! The low ACE score people do not understand us and I may be able to help you let go of some of the automatic survival reactions and fit in with the people who had a nice childhood more easily.”

It doesn’t seem useful to me to say “We have to prevent ACE scores.” Um. Tsunamis, hurricanes, Covid-19, wars… it seems to me that the ACE score wiring is adaptive. If your country is at war and you are a kid and your family sets out to sea to escape, well, you need to survive. If that means you are guarded, untrusting, suspicious and wary of everyone, yeah, ok. You need to survive. One of my high ACE Score veterans said that the military loved him because he could go from zero to 60 in one minute. Yeah, me too. I’ve worked on my temper since I was a child. Now it appears that my initial ACE insult was my mother having tuberculosis, so in the womb. Attacked by antibodies, while the tuberculosis bacillus cannot cross the placenta, luckily for me. And luckily for me she coughed blood at 8 months pregnant and then thought she had lung cancer and was going to die at age 22. Hmmm, think of what those hormones did to my wiring.

So if we can’t prevent all ACE Scores, what do we do? We change the focus. We need to understand crisis wiring, support it and help people to let go of the hair trigger that got them through whatever horrid things they grew up with. 16% of Americans have a score of 4 or more BEFORE Covid-19. We now have a 20 or 25 year cohort that will have higher scores. Let’s not label them doomed or damaged. Let’s talk about it and help people to understand.

I read a definition of misery memoirs today. I don’t scorn them. I don’t like the fake ones. I don’t read them, though I did read Angela’s Ashes. What I thought was amazing about Angela’s Ashes is that for me he captures the child attitude of accepting what is happening: when his sibling is dying and they see a dog get killed and he associates the two. And when he writes about moving and how their father would not carry anything, because it was shameful for a man to do that. He takes it all for granted when he is little because that is what he knows. One book that I know of that makes a really difficult childhood quite amazing is Precious Bane, by Mary Webb. Here is a visible disability that marks her negatively and yet she thrives.

A friend met at a conference is working with traumatic brain injury folks. They were starting a study to measure ACE scores and watch them heal, because they were noticing the high ACE score people seem to recover faster. I can see that: I would just say, another miserable thing and how am I going to work through it. Meanwhile a friend tells me on the phone that it’s “not fair” that her son’s senior year of college is spoiled by Covid-19. I think to myself, uh, yes but he’s not in a war zone nor starving nor hit by a tsunami and everyone is affected by this and he’s been vaccinated. I think he is very lucky. What percentage of the world has gotten vaccinated? He isn’t on a ventilator. Right now, that falls under doing well and also lucky in my book. And maybe that is what the high ACE score people have to teach the low ACE score people: really, things could be a lot worse. No, I don’t trust easily and I am no longer feeling sorry about it. I have had a successful career in spite of my ACE score, I ran a clinic in the way that felt ethical to me, I have friends who stick with me even through PANDAS and my children are doing well. And I am not addicted to anything except I’d get a caffeine headache for a day if I had none.

For the people with the good childhood, the traumatic brain injury could be their first terrible experience. They go through the stages of grief. The high ACE score people do too, but we’ve done it before, we are familiar with it, it’s old territory, yeah ok jungle again, get the machete out and move on. As the world gets through Covid-19, with me still thinking that this winter looks pretty dark, maybe we can all learn about ACE scores and support each other and try to be kind, even to the scary looking veteran.

Take care.

Ride forth

I wrote this poem more then ten years ago, but since I want to reference it in an essay, I am putting it up here now.

Ride Forth


My grandmother
Packed all her troubles in her saddlebags
And rode forth singing

My mother
Packed all her troubles in her saddlebags
And rode forth singing

My father
Was the only one
Who ever saw the contents
He tried to drown them

My mother was loved
For her charm

I ride forth
Sometimes I sing
Sometimes I weep

My saddlebags are empty

Prayer flags flutter
Slowly shred
In the wind

I write my troubles
And my joys
On cloth
And thank the Beloved
For each

My horse is white
When I sing
Black
When I cry
A rainbow of colors
In between
The whole spectrum
That the Beloved allows

After I emptied
My saddlebags
I tried to leave them
But the people I meet
Most, most, most
Are frightened

A naked woman
On a naked horse

I had to leave my village
When I learned to ride her
Made friends with her
Beloved
My village does not allow tears
When she turns black
Their saddlebags squirm and fight
The people try to throw them on my horse

In other places
The horses are all black
The white aspect of the Beloved
Frightens them
And they attack

I carry saddlebags
And Beloved is a gentle dapple gray
And the illusion of clothes surrounds me
When we meet new people
Until we know
It is safe to shine
Bright
And dark

I hope that others ride with the Beloved
In full rainbow

I ride forth
Sometimes I sing
Sometimes I weep

Even the color lonely
Is a part of the Beloved

even if

even if

I never see you again
you never speak to me again
you never love your bearish parts
you never let yourself get angry
you never let yourself get sad
you never let yourself feel
you tell yourself you are happy
you tell yourself everything is the way it should be

even if

I never see you again

I still love you
I still forgive you

I still love you

I hope that you truly do

find happiness

What do you see?

What do you see in this rock?

He just left his body

This is about memory loss.

One of my patients eventually had to have her husband admitted to memory care. He was falling, he was angry, he outweighed her by 50 pounds and he was incontinent. When he fell, she could not get him up.

She went to our hospital Grief Group and came to see me, angry.

“They said he’s still alive!” she snarls. “I got mad and said, no, my husband is gone! He just left his body!”

“I’m so sorry.” I say. “I am sorry that they don’t understand.”

“I’m selling his stuff.” she says. “I don’t have any use for Ham Radio equipment. And HE doesn’t EITHER, now.”

She stomps out. I am sure she cried too.

That is how I think of Alzheimer’s. Neurons burning out from the present to the past. When the person can no longer talk, they are close. Then they are in the womb and stop eating.

Let them go, let them go, god bless them. Where ever they may be. You may search the wide world over but your memory person is free….

Free fall

I feel safest with the fallen

Everyone falls
No one is good

I am afraid
Of the people who
pretend to be good

the fallen
don’t pretend

We fell down down down
like an eternity
like it would never end

We were bad
depressed drunk addicted
liars cowards thieves

We held our arms out
There was nothing to stop us
Free fall

All we could do
was pray

We prayed
As best we could
With all our hearts
If we had no words

Falling angels
Caught us

Helped us
Claw our way back

Some people fall
Are still falling
Fall forever

Are they crazy
Or do they choose
To stay with the angels?

The people who say
They are good

We look at them

We know they haven’t fallen

They are lying to us
They are lying to themselves
They are lying to the Beloved
They want to be good
They want what they say to be true

But it isn’t

I meet the eyes of another fallen
Knowledge

I can see the memory
Of infinite free fall
In their eyes.

Yard Art

There is a fabulous garden in Portland, Oregon decorated with bowling balls.

i have decided to decorate with oxygen tanks.

if anyone has any oxygen paraphernalia, I want it, please.

This art installation is titled “Tethered”. Or possibly “Chained.”

Game ball

Warning: this post contains some time out words.

How do I process the game you played?

I am the subject of the game.

Or the victim.

Or no, I refuse. It is your game. I was not playing. I am the honey badger, metabolism so fast that I have to run from one meal to the next or else I will starve. I eat whatever I can find: cobras, bees, anything. I eat or I die.

You have tethered a honey badger to oxygen by playing a game.

I am the football and you have been kicking me, throwing me, catching me, slamming me to the ground as hard as you can in the end zone.

And now that I am worn and damaged and torn, you’ll toss me away, not even notice me, and find a new ball.

You will need a new football. To play with.

I don’t envy that person.

The truth is, it will be one of you. The group will rest on their laurels, oh, we nearly killed her, wasn’t it great? We showed her. She is so stupid, took her what, 21 years to fucking figure it out? And she thinks she’s so smart.

I was looking for food because I am always hungry. The food insecurity goes back to infancy. Maybe to the womb: my mother says she was not to gain weight and spent the entire pregnancy longing for a gigantic ice cream Sunday. Think of being in a womb, attacked by antibodies to tuberculosis, and starving all the time. Might be a little bit worried when birth happens. Fuck, I am going through a tunnel, what horrors await me here? But maybe there will be more food.

Maybe someone will love me. Maybe there will be someone for me to love. And feed. We can give each other food.

My advice to you is don’t be the ball. I was the ball for 21 years. I was so hungry the whole time, for food and for love, that I kind of noticed but dismissed it as unimportant. Food and love were more important. Work and my patients were more important. You don’t matter and your games are trivial.

It will be the weakest one who will be the ball. You worry that you are the one. You should worry. You had better look strong right away. Post some horror. Write something really tough. Don’t show anyone any niggling doubts. Um, the ball is wearing oxygen. I am feeling a little bad about this. Are you feeling bad about this? The ball isn’t just crazy, it’s hurt. Actually crazy is an illness too: I know that you discriminate and think that cancer is a legitimate illness and that mania isn’t, but you are assholes. No, you’re too small and pathetic to be an asshole. You are a one celled animal that is clinging to a hair on an asshole and you get shat on daily. And you know, deep deep in your tiny shrunken heart, that you deserve it.

I am so glad I am not you.

I am tethered to oxygen. But I am healing. I don’t think you can. You are locked in your small sick pathetic triangulation competition and pretending that it’s a game that it’s ok that you are just playing.

Ick.

Meanwhile, the oxygen is portable.

I have food and I have love and I have work to do that lifts me on wings. I will go too near the sun and light on fire and fall burning, but that’s ok. I’ve done it before. The ocean heals me, always. It is so much fun to fly!

This is in memory of my mother, my father and my sister. I miss all three and I love them and they love me. Today is the day my mother died. The longer we live, the more days are days when someone that we love died. But they are still here. They are in the rocks and the sky and the trees and the coffee cup. They are not in sugary donuts or foods that cause heart attacks. But they are all around us, cradle us, still love us. Joy to you and the memories of your loved ones who have gone on. Blessings.