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.

pigs and fishes

is it ok

if I don’t make sense for a little while?

this is hard

it’s really hard
sometimes
to communicate

I never did
join the mainstream
of medicine

I went to class
to medical school
and wondered
and noticed
that the classes resembled
descriptions of cults
how they train people

and I thought
I am not joining any cult

and I kept my mouth shut

in the elevator
when another student says
“The other day
I threw out all of my husband’s plaid shirts.
I hate them.
They are too low class.”
If he loves them, you’ve hurt him, right?
and I think
I could say
“Yes, I hate it
when my husband
wears my plaid skirt
he stretches them all out
and ruins them.”
I would be outed
even more than I already am
as weird.

I don’t say a word
I just think
words

Medical school is four years
Residency is three
I am quiet there too
impression that I am shy
which is a lie
even so, the faculty fear me

I hear, 25 years later

and I am surprised

5 foot four
130 pounds

what the hell is there to fear?

though a boyfriend says
“You turn into an ogre
when you are angry.”

but I am quiet
in medical school
in residency
except when a patient
needs me
to speak

morph to ogre
morph to werewolf
if needed

as I get older
slowly
slowly
I learn
more subtelty

mostly from my children
who are subtle
and very very smart

at any rate

I never bought in to
the give opioids to everyone

and eventually
it turns out
that my intuition
or instinct
or whatever the hell you want to call it
study of addiction from the experience
and reading in college
matches
the studies
that come out

now I have another one
an intuition

the data is catching up with me

it’s funny
in my small community

I feel so lonely
after 21 years
mother’s death, sister’s death, father’s death
divorce
single mother 2 children
niece don’t go there
I am labeled by the medical community
I hear that the senior doctor
in the community
tells a woman midlevel
at a party
that I am crazy

maybe so

but I was right about opioids

pigs and fishes

is it ok

if I don’t make sense for a little while?

maybe
just maybe

they could listen to me this time

but I don’t think

they
will

that would be ok
but it is hurting people
and I can’t bear that

so I put myself
back in the traces

once in a massage
I thought
I can’t bear this
I am not strong enough
and suddenly I was in a dream world
where my back was enormous
huge
unending
and I thought, oh, I can bear this
thank you
I think

I put myself back in the traces
I am an ox
I plant my hooves

I begin
to pull
hard

pigs and fishes

even as I cry

The photograph is from 2014. Two pairs of glasses frames ago….

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

Letter to a younger friend

After my mother died I really struggled, partly because I was in the midst of a divorce and felt like a massive failure. I did not like myself. But I kept thinking about my mother and how much she hid: and eventually I thought, you know, I love all of my mother. Even the stuff she hid. If she is lovable then so am I.

What is lovable in your parent? And would you miss her/him if she/he were truly gone?

That is the hard thing for me, that I couldn’t think about that until she was dead. With my sister, I thought about it before she died and changed how I behaved and let her know when I disagreed with her. Even though she had cancer.

Isn’t the greatest gift we can give each other loving honesty? I love you and I disagree with you and I am not going to do what you want just because you (are my mother/are my father/have cancer/have emphysema/want it/are dying). Isn’t the greatest gift to be ourselves and take the flack for it?

Cucumber love is a poem I wrote more then ten years ago about dropping the exoskeleton that we wear for society’s and our family’s approval. It takes courage. You can drop a little piece at a time and let them get used to it. And yes, some people may reject you for good. That is their choice. But you have to ask yourself then, did they ever really love you or did they only love to control you?

Cucumber love

They say they love you
And they do

Sort of

One day you find yourself
Wearing a construct
An exoskeleton
Awkward
You can move
See out

You built it slowly over years
Because that’s what you were told to do
You wanted to be loved
It made you feel safe

There is praise
Or at least pressure to keep it on
You may not have known it was there
And slowly begin to feel
Who you really are
Awaken to the shell

One day you slip out

They are still saying how much they love you
To the empty construct

You watch bemused
For a while

You say “That isn’t me.”
“Of course it is,” they say

“I’m over here,” you say

Shock and outrage
“That’s not you!
You’ve changed, you’re depressed
Confused, manic, gone out of your mind!”
Off the deep end

You might even go back in to
the construct for a little while

But now you’ve tasted freedom
You won’t be able to stand it for long
You will be out soon

Some people will see you as you really are

Some people will tell you they still love you
But as they say it to the construct
They act as if you’re still wearing it
They still think you love cucumbers
Though you ate that dish once to be polite
They hold the construct in their minds
Even after you’ve destroyed it
And behave the same as they ever did

As you walk away
You will wonder who they loved

Judgement

Why are the roses caged, you ask? What did they do? Nothing, they are being protected. I found that rose and transplanted it years ago, but our deer eat the buds every year. This is the first time that it has bloomed in the 21 years I have lived in this hours. Isn’t it beautiful?

I am listening to this:

I wrote this poem today. This is one of the poems where I have no idea where it will go when I start writing it. I start writing about judgement and it never ever goes where I expect. The poems go where I want to go in my deepest heart, in my soul. I am never where the poem is, the poems show me the way….. Then I try to go there. And it can take years….

I am being judged
and watched

I have no issue with the Beloved

it’s the humans I don’t like

I twist people’s words
but not with malice

when the antibodies are up
it is hard to communicate
hard to explain
it is hard just to survive
and I might be focused on survival first
and comforting the people around me second

can you blame me?

how near to death have you passed?
and how often?

first pneumonia
heart rate 135 when I stood up

my doctor and I could not understand it

my doctor partners thought I was lying
in 2003

second pneumonia
after my sister’s death
which was bad enough
but the legal morass that she had set up
with her daughter as the center

pitting me and her daughter’s birth father
and my father
against all the PhDs in the maternal family
smart, smart, smart
yet emotionally stupid

my niece is not an inheritance
to be passed to whom my sister wants

she reluctantly came home
and the myth endures
that this is an injustice

third pneumonia
one year after I find my father dead
triggered by grief
and the outdated will
and the mess he leaves

and I don’t even get sued
about the will
for another year

endure that
endure endure endure
endure hatred
endure triangulation
endure meanness
unwarrented

I do not care
if you want to believe
what you want to believe
it isn’t true
and it hurt

and I learn to let go

with the fourth pneumonia

I see the liars surrounding me
downvoting
yes, it does matter
except that one that I trusted
that mentored me

has lied all along

that hurts too

let it go
let it go
let it go

and I let it go

each pneumonia is a time of change
creativity
I am lonely and sick
and not trusting

as I improve
slowly, slowly

I wander garage sales
estate sales

and find things
things that are beautiful
things that enhance my joy

at the start of covid
I was so down
I was so sad
I wanted to lie in the street
and give up

the Beloved sent a spirit
he says he is no angel

I see angels bright and dark
after all they all fall

just as humans do

we all fall
we all fall down

try to look perfect
try to look virtuous
tell yourself that you are good

that is the biggest lie of all

the bad parts of your spirit
locked in the basement of your soul
howl
howl and want to be freed

and if one gets out
and you reject her or him

he will return with nine friends
yes that is what the bible says

she will return with nine friends

he/she MONSTER
will free the others

and you will do bad things
you will be terrible
you will hurt people
while you try to contain
while you try to lock away
while you try to chain
your monsters
your evil
your self

let them go
let the monsters go
they are howling
I hear them all the time
when I meet you
when I speak to you
the monsters howl at me
begging to be loved

yes, they want to be loved
and I love them

but if I mention them

you get that look
of horror

someone sees
me
someone sees
my evil
someone sees
what I hide

I can’t help it
raised in alcohol neglect and lies
on my own
as soon as I can walk

but I can’t walk away
at nine months

so I find other escapes
words
songs
books
poetry
rhymes
numbers

and my sister
when she is born

I do all the mothering

that I have longed for

even though I am three

we were talking about your monsters
not mine

you must go in to the cave
where you have locked them

and free them all

fall on your knees

and say
forgive me forgive me

for I have sinned

bow your head

and hold out your arms

and what, you say,
will the tortured monsters do?

will they smite you?
will they burn you?
will they lock you in their place?

mine didn’t
mine were babies
grief, fear, shame
and I embraced them
carried them up to the light
and care for them

wash them
diaper them
feed them
wrap them in warm blankets

and love them

until they stop crying

and begin to grow

Caged

I was trying to remember the name of this poem the other day. Then I put up the rose picture and remembered. I wrote this in or before 2009.

Caged


She was raised in captivity
Wild one
With her family
They knew the ways
Of the captors
Obedience

The call
Of the wild
Was too strong for her

She strained at the lead
Ears cocked
Hearing
All
And distant calls
Those who were free

She was beaten
Shunned
Thrown in solitary
They told her the rules
Over and over

She fought
Lacerating her captors
And herself

Her family
Wearied
Turned their heads away

Chained
She mourned
Isolated

They didn’t watch her
Closely
Any more

She chewed off her paw
Free

They didn’t notice
She growled
When they came near

They threw the meat
From a distance

Her cubs circled
Behaved
To all appearances

“When, mother?” they whispered

She mourned
As the leg healed
Her gait became stronger

The cubs and she
Ran at night
While others slept

At last she tried once more
Mourned
Howled
Cried to the sky
Grief
Pain
And the call of the wild

The family cringed
Pressed their ears
To stop the noise

She rose
And broke the chain
On the cage
That held them

Howled

They turned away
Cowering
In the familiar

Now she rises
Turns
Trots from the compound
Cubs behind

She sets a steady pace
A loping gallop

They do not look back

Someday
The family may choose
To free themselves

But not now

She follows the voices
To freedom
And the unknown

look, ma, my feet match!

NO, I did not injure the other foot. But… I couldn’t find a shoe that matches in height and rocker bottom so I was walking funny. Which is bad for the hips and back and all the other joints….

I told my friend that arrived that I needed a boot for the right leg and she had one… in the trunk of her car… that she was going to throw away! WOW!

Feels peeeQueueliar, I do think, but at least the rocker bottoms match. The right leg is a large and I need a medium or hmm, dunno the size but smaller. If anyone has a smaller one lying around….

beach walk

My daughter is home and we went on a beach walk yesterday! The stupid oxygen keeps me from going fast. She went for a bike ride afterwards. Hooray!

Yesterday evening she brought up social distancing and how careful she should be. She has about 5 friends who are home that she is going to walk with. I am still wearing a mask over my oxygen tubing most places. She will unmask if they are vaccinated and they don’t have a cold or anything else. Even a cold would make me worse at this point. It makes me grumpy to be vulnerable, but I appreciate the discussion.

outfits inappropriate for work 3

Ok, maybe it is not inappropriate for work. But it would be a little weird for work… I was going in the woods with my oxygen tank. “Local doctor of 21 years found eaten by cougar, which then died because it couldn’t digest the oxygen tank.” Heh.

Listening to this, fabulous!!!

outfits inappropriate for work 2

When pneumonia nearly takes me out, I want COLOR. I think I managed it with this. The skirt is not only silly, but a little short for me to wear to work….