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

Illusion

I knit this lovely striped scarf. It is just brown and pink stripes. No tricks, right? Two rows of pink and two rows of brown.

For the Ragtag Daily Prompt: wool.

Ode to defiance

Is oppositional defiance running YOUR life?

I am oppositional defiant. I have been for as long as I can remember. I ALWAYS want to argue when someone tells me to do something or gives me advice. BUT, I have learned to work with it.

I work with it by arguing with myself.

Give me a topic. Or advice. I will promptly argue the opposite, internally or externally. Then I will argue the original side. Then my demon fights my angel until they are both tired and decide to go have a beer. Somewhere along the way I will make a decision and also I will laugh, because it’s funny.

B has figured this out. “You argue with EVERYTHING.” he says.

“Yes, and if there is no one around, I argue with myself. All the time.”

However, he is also oppositional defiant. He is smart too, and doing some self examination.

“I am thinking about my life. I think ALL of my important decisions were oppositional defiant ones.”

“Someone told you you couldn’t do that?

“Yes.”

He’s chewing on that. Heh. He accuses ME of overthinking. I replied that I am making up for his underthinking, heh. He suggests that I STOP overthinking and I say, “You want to DESTROY the SOURCE of my poetry?” Double heh.

The point is, some of us are oppositional defiant, but really, we don’t want that to run our lives EITHER. We don’t want ANYTHING or ANYONE to tell us what to do.

B says, “I think that everyone refusing the vaccine is oppositional defiant.” He has a lot of friends, both liberal and conservative.

“That is interesting.” I say. And I wonder if it is worth dying for, to be oppositional defiant. Not if it’s running your life, right? I don’t want ANYTHING to run my life except ME.

So then I spend a bunch of time arguing with myself about the causes of refusing the vaccine. And I have not reached a conclusion. Yet.

I took the photograph at the Bellevue Mall on Monday. A three story waterfall. Really? Isn’t there enough rain in Seattle? We should have a three story sun instead.

ring

I dream a night sky thick with stars

all the stars start falling

I think “That isn’t good.”
sore afraid

all the stars are angels falling

I think “That isn’t good.”
sore afraid

an angel falls close past me
in space
face at perfect peace

I think “Why do they fall?”
sore afraid

I am falling in space
head down
no earth beneath me
with the angels

crying, imperfect acceptance
sore afraid

I wake
I put the dream away

it comes back
in a decade

I write about wings
sore afraid

I try to understand
sore afraid

I am asked what my small self
my child self
wants

wings

I say yes
no longer
sore afraid

did you hear the bell?

yes

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.