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.

Mask refusal in the 1918-1919 influenza pandemic

This is from an article about the history of medicine, about people refusing to wear masks in the 1918-1919 influenza pandemic:

“Adherence is based on three concepts: individualism versus collectivism; trust versus fear; and willingness to obey social distance rules. Jay Van Bavel opines that some countries tend to be more individualistic,16 and therefore more likely to reject rules and ignore attempts by public health authorities to “nudge” behavior change with risk messages or appeals for altruism. In collectivist cultures, people are more likely to do what is deemed best for society. Trust and fear are also significant influences on human behavior.17 In countries with political division, people are less likely to trust advice from one side or the other and are more likely to form pro- and anti- camps. This may also undermine advice issued by public health professionals. The last and most difficult to attain is social distancing. Human beings are social animals with bodies and brains designed and wired for connection. A pandemic, in many ways, goes against our instinct to connect. Behavioral psychologist Michael Sanders argues that if everybody breaks the rules a little bit, the results are not dissimilar to many people not following the rules at all.18

From another article:

“It was the worst pandemic in modern history.

The 1918 influenza virus swept the globe, killing at least 50 million people worldwide.

In the US, the disease devastated cities, forcing law enforcement to ban public meetings, shut down schools, churches, and theaters, and even stop funerals.

In total, 675,000 Americans died from the Spanish flu, named after the disease’s early presence in Spain.”

I read a book on the 1918-1919 influenza. It started in the U.S. The photograph that haunts me is the bodies stacked five deep in the hallways of San Francisco Hospitals.

And in a third article:

“The scenes in Philadelphia appeared to be straight out of the plague-infested Middle Ages. Throughout the day and night, horse-drawn wagons kept a constant parade through the streets of Philadelphia as priests joined the police in collecting corpses draped in sackcloths and blood-stained sheets that were left on porches and sidewalks. The bodies were piled on top of each other in the wagons with limbs protruding from underneath the sheets. The parents of one small boy who succumbed to the flu begged the authorities to allow him the dignity of being buried in a wooden box that had been used to ship macaroni instead of wrapping him a sheet and having him taken away in a patrol wagon.”

A CDC article about the history of the 1918-1919 influenza says this:

“The fully reconstructed 1918 virus was striking in terms of its ability to quickly replicate, i.e., make copies of itself and spread infection in the lungs of infected mice. For example, four days after infection, the amount of 1918 virus found in the lung tissue of infected mice was 39,000 times higher than that produced by one of the comparison recombinant flu viruses.14

Furthermore, the 1918 virus was highly lethal in the mice. Some mice died within three days of infection with the 1918 virus, and the mice lost up to 13% of their body weight within two days of infection with the 1918 virus. The 1918 virus was at least 100 times more lethal than one of the other recombinant viruses tested.14 Experiments indicated that 1918 virus’ HA gene played a large role in its severity. When the HA gene of the 1918 virus was swapped with that of a contemporary human seasonal influenza A (H1N1) flu virus known as “A/Texas/36/91” or Tx/91 for short, and combined with the remaining seven genes of the 1918 virus, the resulting recombinant virus notably did not kill infected mice and did not result in significant weight loss.14

The 1918-1919 influenza virus was sequenced and studied in 2005. We did not have the tools before that. Frozen bodies were exhumed with the permission of Inuit tribes to find the virus.

Later, that same article talks about future pandemics:

“When considering the potential for a modern era high severity pandemic, it is important; however, to reflect on the considerable medical, scientific and societal advancements that have occurred since 1918, while recognizing that there are a number of ways that global preparations for the next pandemic still warrant improvement.”

Let us now travel back to a worse epidemic: the plague in the Middle Ages:

“Did you know? Between 1347 and 1350, a mysterious disease known as the “Black Death” (the bubonic plague) killed some 20 million people in Europe—30 percent of the continent’s population. It was especially deadly in cities, where it was impossible to prevent the transmission of the disease from one person to another.”

I am hoping that people will awaken, get their vaccines, wear their masks and stop Covid-19 in its’ tracks, so that our death rate resembles the 1918-1919 Influenza. Not the Middle Ages plague.

practicing grandmother

My sister sends me a t-shirt years ago.

It said, “I don’t know if I am the good witch or the bad witch.”

I burst into tears and put it in the trunk of my car. I never wear it. I am the designated bad witch for half my family. We won’t go into that.

She gets a shirt too. Hers is the green one. Mine is black.

She is dead, in 2012, breast cancer. It’s hard to describe the fallout. Toxic and radioactive. But… I have decided not to be a witch.

Instead, I am a practicing grandmother.

Really I’ve been one for a while. There was a young couple who lived down the street with two children. This was in 2014. I was a Facebutt friend, so sometimes noted what was happening. The father has to travel for his job. The mother is trying to care for two kids and work and so on… been there.

In 2014 I am recovering from my third round of pneumonia. This third round it takes six months before I can return to work. Short of breath and coughed if I talked. The state medical watch doctors went to disable me but I fight them tooth and nail. I win.

I wander down to the neighbor and offer my services. She already knows me. She is instantly grateful and two year old T is introduced to me, again. He doesn’t really remember me. She explains that he is coming to my house for a little while and then back home.

T and I walk towards my house.

A nuthatch calls.

I stop and reply. In college I took ornithology and the teaching assistant could do a barn owl call so well that the barn owls would do a territorial fly over at night to see who had the weird accent. Marvelous.

The nuthatch and I went “enh” back and forth. T is amazed. This woman talks to birds. Then we see the nuthatch! I point out how nuthatches come down a tree head first. “If you hear that call, it’s a nuthatch. Look for it.” The nuthatch is very cooperative. Magic.

We get to my house. T is clutching a book. “He’s taking it everywhere,” sighs his mother. “I’m not sure why.”

So first we read the book. It is a board book about a farm. Each page has a central picture and then there are pictures around the edges with the word under each picture. On one page T says, “Haaaaay.”

“Oh!” I say, delighted. “You can read HAY!”

His face lights up. An adult who gets it! Yes! He can read HAY!

On another page he says HAY. “Oh,” I say, “That is straw. Straw is a lot like hay but it’s not exactly the same.”

He is very serious absorbing that information.

I show him my closet. There is a stick horse. Only it isn’t a horse: it’s a unicorn dragon, with a forehead horn and wings. When you press a button it’s eyes flash and it roars.

Ok, that’s pretty scary. He wants the closet door closed and he does NOT want to play with the dragon.

Next is pouring. I get out a towel and put it on the kitchen floor. I get out a rather nice expresso set. Bright colors. Orange and green and yellow and blue. I fill the coffee pot with water and invite him to sit on the towel. “You can pour the tea.”

He looks at me with surprise. He picks up the coffee pot. He looks at me again. “Go ahead. It’s ok.” He starts pouring into a cup. He pours until the cup overflows and the saucer overflows and he keeps pouring. The coffee pot is empty. He looks at me a little warily. This is technically spilling and he knows it.

“Would you like more in the teapot?”

He nods.

I refill the coffee pot with water and he starts again, with a different cup.

When I return him to mom, after two hours, he’s damp. “Sorry, he got a little wet, but it’s just water,” I say cheerfully. Mom is too harried to do much more than look resigned at a change of clothes.

Next time he comes with a change of clothes and his large stroller, in case he goes down for a nap.

And first off, he goes to the closet. Time to hear that dragon roar again.

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?

Broken rock

Water breaks rocks.

How? It does wear them down, but it can also break blocks off. Water goes into any tiny crack. When it freezes, it expands. Over time, the crack is widened, until the rock breaks. Rock cannot stand against water.

Top ten causes of death: US 2020

Top ten causes of death US 2020, according to JAMA, here.

Total deaths: 3,358.814
Contrast total deaths in 2019, at 2,854,838. That number had been on a very slow rise since 2015 (2,712,630) to 2019 (2,854,838). That increase over four years is 142,208 people. Then the death rate suddenly jumps 503,976 people in one year. Ouch. I cannot say that I understand vaccine refusal.

1. Coronary artery disease: 690,882
Heart disease still wins. And it went up 4.8%. It is suspected that people were afraid to go to doctors and hospitals. I saw one man early on in the pandemic for “constipation”. He had acute appendicitis. I sent him to the ER and his appendix was removed that day. He thanked me for seeing him in person. Might have missed that one over zoom.

2. Cancer deaths: 598,932
This is cancer deaths, not all of the cancers.

3. Covid-19: 345,342
I have had various people complain that covid-19 is listed as the cause of death when the person has a lot of other problems: heart disease, cancer, heart failure. The death certificate allows for more than one cause but we are supposed to list the final straw first. I cannot list old age, for example. I have to list: renal failure (kidneys stopped working) due to anorexia (stopped eating) due to dementia. That patient was 104 and had had dementia for years. But dementia is not listed as the final cause. So if the person is 92, in a nursing home for dementia and congestive heart failure, gets covid-19 and dies, covid-19 is listed first, and then the others.

4. Unintentional injuries: 192,176
Accidents went up, not down, which is interesting since lots of people were not in their cars. However, remember that the top of the list for unintentional injuries is overdose death, more by legal than illicit drugs. If there is no note, it’s considered unintentional. Well, unless there is a really high blood level of opioids and benzos and alcohol. Then it becomes intentional. They do not always check, especially if the person is elderly. The number rose 11.1%, which seems like a lot of people.

5. Stroke: 159,050
This rose too.

6. Chronic lower respiratory diseases: 151,637
This went down a little. This is mostly COPD and emphysema. So why would it go down? Well, I think bad lung disease people were dying of covid-19, right?

7. Alzheimer’s: 133,182
This seems to belie me putting renal failure due to anorexia due to Alzheimer’s. I think they actually read the forms and would put that as Alzheimer’s rather than renal failure, because it is not chronic renal disease.

8. Diabetes: 101,106
This rose too. 15.4%, again, probably partly because people avoided going to clinic visits. Also perhaps some stress eating. Carbohydrate comfort.

9. Influenza and pneumonia: 53,495
So this went up too in spite of a lot less influenza. Other pneumonias, presumably.

10. Kidney disease: 52,260
This went up.

And what fell out of the top ten, to be replaced by covid-19?

11. Suicide: 44,834
This actually went down a little. What will it do in 2021?

So what will 2021 look like? I don’t know. It depends what the variants of covid-19 do, depends on what sort of influenza year we have, depends on whether we are open or closed, depends if we bloody well help the rest of the world get vaccinated so that there is not a huge continuing wave of variants.

Today the Johns Hopkins covid-19 map says that deaths in the US stand at 608,818 from covid-19. If we subtract the 2020 covid-19 deaths, we stand at 263,495 deaths from covid-19 so far this year. Will we have more deaths in the US from covid-19 than in 2020? It is looking like yes, unless more people get immunized fast.

Take care.

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

Bears all his sons away;

I wrote this story today. I am not Native American. As far as I know, I am white, but then, I have not done any genetic testing so who knows? This was inspired by a poem of the same title: https://everything2.com/user/etouffee/writeups/Bears+all+his+sons+away%253B

One
I am wailing. I am crying. The Bear came today, our bear, the tribe’s bear, our Spirit.

But he didn’t just walk through camp and take fish and his tribute.

He took my son.

He walked right up to where my wife stood still, as we must when he comes, and he lifted the boy in his paws. The boy was quiet and still, he did well, he was brave, but when the bear turned to leave, he called once.

Then our bear dropped to three legs, my son in the fourth, and turned and left.

My son, my son, my heart, my joy. Spirit Bear, return him to me!

Two

We fought, argued, for a very short time. The Shaman said that if Spirit Bear wants my son, he shall have him.

He does have him, I said, but I want him back. The Shaman knew that was true. Some shook their heads and say that my son is already dead, but most agreed with me. We were on the trail nearly immediately. The bear should not be able to move as quickly as usual when he is carrying my son. I dread evidence of my son’s loss, that he will be eaten. But that has never happened, in the history, in the songs. The Shaman said as much. But neither has a bear taken a chief’s son.

Three
Spirit Bear is moving amazingly fast on three legs. He is headed for the mountains. Not a surprise. My son may get cold. But bears are warm. My son has not been eaten.

Four

We have to make camp. I am so angry that we have not caught Spirit Bear. Out of our home camp he is fair game.

We do the Bear Dance, four times. We did not bring the masks and the young men dance the women’s part and one sings the woman’s part. We made quick rough masks and costumes. The Spirits will forgive us. This is past all understanding.

What does a Spirit Bear want with my son? Four years. No one knows.

Five
Day again. I am up before dawn praying for light, for my son, to find the Spirit Bear.

Six

We are hot on the trail. We find that Spirit Bear did sleep and rest. My son is dropping beads. Smart boy. Each bead means that he is still alive and relatively unhurt.

Seven

We have spotted them. Spirit Bear stood and looked down at us, my son tucked against his side. My son very slowly raised his arm, so he knows.

Eight

We are approaching the peak. Everyone is tired from the climb and hungry and thirsty. Yet we keep going. No one complains.

Nine

We reach the peak and Spirit Bear and my son. We arm our spears and arrows, but my son shouts “No! Look!” We turn. We see the water. There is something in the water. It has tannish wings that are filled with wind. It is huge compared with our boats.

We turn to my son. He stands and Spirit Bear leaves, ambling down the mountain, quickly, gone. I hurry to my son, sweep him up. He starts shaking and then cries, leaning his head into me.

We turn and watch the tan winged thing, which is coming against the wind. It comes at an angle and then turns, to the opposite angle, yet still it comes. We know this is new and that there can be terror or joy, we do not know which. There will be learning, we know that.

My son falls asleep. We carry him down to water and camp. We are all singing quietly, the song of new things, fear and joy. The Shaman will welcome us when we are home, and we will prepare for the winged thing. We do not know what it will bring.

We thank the Spirit Bear for warning us, for telling us to prepare.