wearing sunglasses in the rain

Trigger warning: this is about dementia. I wrote this over ten years ago.

wearing sunglasses in the rain

I am weeping for you both

you have cared for her
for better or worse, for richer or poorer, in sickness and health

and she has lost her memory

you told me on the phone
that it’s not that bad

you say it again in the room

I knew before I saw her
that it was bad, very bad, much worse
she is only 60

she becomes agitated when we try to weigh her
old style doctor’s scale
frightens her to try to step up.
gentle caregiver that you have hired
pushes her, until I say stop, stop, stop
her weight does not matter

shuffling gait
she is frightened to be in a new place
I ask her questions gently
she does not want to sit in the chair in the exam room
“No!” she says “No!”
I leave the room until she’s calmer

when I return
I give her choices
“Shall I examine you first with my stethoscope
or shall I talk to your husband?”
I choose for her, the latter
she relaxes, a little
later, I tell her each step before I do it
she is slightly tense when I lay the stethoscope
on her thin shoulders, but she doesn’t fight

she tenses as I ask her husband questions
about the memory loss
ten years now, a steady course
I ask him what he understands about the prognosis
he shifts uncomfortably
and I ask her if she would like to wait in the waiting room
while I talk to him
Firm and clear: “Yes, I would.”

She is not in the room now
he says that she is not too bad
the picture comes slowly in to focus
mild memory loss, is what he thinks

there are three stages of memory loss, I say
mild, the short fibers, where short term memory is affected
we forget what someone just said
moderate, the medium axons
we forget the recipe that we’ve know for 50 years
we forget how to do math
we forget names and how to get to the store
we forget how to operate the car
severe, the long axons
executive function
we do not initiate things
we forget to get dressed
we forget how to speak
we forget our potty training

his eyes grow sadder and sadder

at last, we return to being a baby
we forget everything
at last, we remember the womb
we no longer want to eat

is she forgetting to eat?

he is not ready to answer

as we leave the room
he says that she is not sleeping well
she seems to be awake at night
eyes closed
but her fingers are moving, as in play
he doesn’t speak to her
he needs to sleep and thinks she should too

should he give her a sleeping pill?

maybe she is happy, I say
maybe in bed in the dark
you are there and it is safe
no one is making her get dressed
no one is making her bathe
maybe that is where she wants to be awake
I would not give her a sleeping pill

the dogs are in the room
he says
and the tv is on just a little
maybe she is happy

he is wearing sun glasses
as they cajole and help her in to the van

he is wearing sun glasses
though it is overcast, low clouds and raining

sometimes it is so hard
to say what I see
to try to say the truth

sometimes the truth is not gentle
but sometimes the truth is love

I am weeping for you both

written 2010

his steady light

Dreaming of the Sun
whose warm rays surround her
and caress her
daily

she orbits him
and he pours his love on her
steady
constant
joyous

occasionally he flares up
and that might hurt
some of the small cells
on her surface

but she sheds
dead cells
they are reabsorbed
and she basks

in his warmth
with joy
ecstatic
orbit

she is alive
turning
whirling
so her small children
are not overcooked

like mercury

are not frozen

like uranus

mars is a rival
but the seas are dead
at least

her small children
think so

and venus
swelters
and is clouded
all the time
toxic

she turns
dancing
full of joy

in his steady light

___________________

written January 8, 2022

Strangels

Angels can take peculiar form.

This is for my Ragtag Daily Prompt: angel.

These Strangels are spotted at the Kinetic Sculpture Race in 2015.

This is during the water trial, to make sure that they float. The sculptures have to be human powered and have to move on land, through mud and through water. The water temperature is between 50-55 degrees, which is cold.

The Strangels are support for this Kinetic Racer.

We have angelic Kinetic Kops too. Sometimes the structures look so peculiar that people forget that they can weigh tons. You do not want to be run over by one.

A Kinetic Kop with wings.
Another racer. It’s a lot to paddle.

Hooray for Strangels and all the other racers. I hope Kinetic can happen in 2022.

obfuscate

“Mom, the chicken tastes funny, but good.”

“Shuddup and eat.”

“Mom, the salty stuff on the chicken is the BEST!”

“Move over, I’m eating yours if you don’t want it!”

“Mom!”

“That kind of chicken is called a potato, dears.”

“Yum, mom, more.”

For the Ragtag Daily Prompt: obfuscate.

vast

Sometimes emotions are vast. I do not think our culture deals with grief very easily. Grief then becomes a vast pit, stuffed inside us. I sent the Falling Angels poems to friends and family. One older friend said that the poems were too sad and was I that sad all the time?

I replied, no, I am not sad all the time. The sadness is in the poems because there are very few people that I know that are comfortable with sadness and grief. So I put it in to poetry, because I do not want to stuff it. We need to let grief come out and let the tears flow and let it go.

For the Ragtag Daily Prompt: vast.

Painting angels

You were an artist
You are an artist
You said that you’d have to live to 120 to finish all your projects
And died at 61
I keep wondering
what the art supplies are like
and if you work on sunsets
or mountains
or lakes

Trey, 9
made a clay fish last summer that I admire
He said grumpily “It’s too bad Grandma Helen died before I could do clay with her.”
He tells me he’s ready to make raku pots to fire in your ashes as you wished
I ask what he’d make
He considers and says, “What was Grandma Helen’s favorite food?”
I can’t think and say that she liked lots of foods
At the same time wondering squeamishly if maybe
he should make a vase and then being surprised
that I am squeamish and thinking of blood and wine,
too, I wonder if my dad would know. “Maybe guacamole.”
I need to find a potter to apprentice him to.

Camille, 4.
asks how old Grandma Helen was when she died.
I explain that she died at 61 but her mother died at 92.
Camille asks how old I am.
40.
When are you going to die?
I say I don’t know, none of us do, but I hope it’s more towards 90.

Camille studies me and is satisfied for now.
She goes off.
I think of you.

I perpetuate
the Christmas cards you did with us
upon my children.
They each draw a card.
We photocopy them and hand paint with watercolors.
Camille wants to draw an angel
and says she can’t.
I draw a simple angel
and have her trace it.
She has your fierce concentration
bent over tracing through the thick paper
She wants it right.
The angel is transformed.

My kids resist the painting after a few cards as I did too.
Each time I paint the angel
to send to someone I love
I think of Camille
and you
and genes
and Heaven
I see you everywhere


January 19, 2002

published in Mama Stew: An Anthology: Reflections and Observations on Mothering, edited by Elisabeth Rotchford Haight and Sylvia Platt c. 2002

For the RDP: another day.

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.

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