I have done two grief playlists. I will do more, but it got me thinking about other playlists. And we need distraction from grief too.
I am a swing dancer and jitterbug dancer. I lived in the Washington, DC area from 1985 to 1989 and then left for medical school. I spent a year being depressed about a breakup. The only time the depression lifted was when I went dancing. I started with contra dancing and then took a swing dance class. In the 1980s, we would have 400-600 people show up at the Spanish Ballroom in Glen Echo Park in Cabin John, MD, for a live band and a lesson, in a no alcohol venue. We would dance our socks off for three hours. We barely clapped for the bands, but they didn’t seem to care, because they liked watching us throw each other up in the air!
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.
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….
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
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
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
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
Discover and re-discover Mexico’s cuisine, culture and history through the recipes, backyard stories and other interesting findings of an expatriate in Canada
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