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

tears falling

I am back in grief
in the ocean of tears
someone has to go there
and I can swim

I can swim on the surface
and I can swim in the depths
no trench is too deep
for me to explore

they think it is dark
in the deepest trench
it’s true that the pressure
is very strong

but all of us
in the deepest depths
learn to glow
and shine

that is what the trench does
at first you are terrified
an ocean of grief
an ocean of tears

but then you see light
beings glowing
some are eating each other
but others smile and wave

if you are not too frightened
if you do not fight and struggle
if you take a breath, calmly
you find you can breathe

and you look at your hands
in wonder as you breathe
in the ocean of grief
in the ocean of tears

you too are glowing softly
in the ocean of grief
in the ocean of tears
you feel welcome

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

Black on white

poem: Black on white

black on white

white on black

it doesn’t matter

angels falling
made to fall
at peace with falling

I let myself fall
at peace with falling

and wonder what that means?

death?

no

though there are times I long
for the Beloved
for union with the Beloved
for all in one
and one all

let go

when an angel falls
they are at peace

they are at peace
with falling

people

see black and white

people

see good and evil

people

separate
label
categorize

angels don’t

black on white
or
white on black

it doesn’t matter
there is no separation
we are one

Beloved

One

He just left his body

This is about memory loss.

One of my patients eventually had to have her husband admitted to memory care. He was falling, he was angry, he outweighed her by 50 pounds and he was incontinent. When he fell, she could not get him up.

She went to our hospital Grief Group and came to see me, angry.

“They said he’s still alive!” she snarls. “I got mad and said, no, my husband is gone! He just left his body!”

“I’m so sorry.” I say. “I am sorry that they don’t understand.”

“I’m selling his stuff.” she says. “I don’t have any use for Ham Radio equipment. And HE doesn’t EITHER, now.”

She stomps out. I am sure she cried too.

That is how I think of Alzheimer’s. Neurons burning out from the present to the past. When the person can no longer talk, they are close. Then they are in the womb and stop eating.

Let them go, let them go, god bless them. Where ever they may be. You may search the wide world over but your memory person is free….

Game ball

Warning: this post contains some time out words.

How do I process the game you played?

I am the subject of the game.

Or the victim.

Or no, I refuse. It is your game. I was not playing. I am the honey badger, metabolism so fast that I have to run from one meal to the next or else I will starve. I eat whatever I can find: cobras, bees, anything. I eat or I die.

You have tethered a honey badger to oxygen by playing a game.

I am the football and you have been kicking me, throwing me, catching me, slamming me to the ground as hard as you can in the end zone.

And now that I am worn and damaged and torn, you’ll toss me away, not even notice me, and find a new ball.

You will need a new football. To play with.

I don’t envy that person.

The truth is, it will be one of you. The group will rest on their laurels, oh, we nearly killed her, wasn’t it great? We showed her. She is so stupid, took her what, 21 years to fucking figure it out? And she thinks she’s so smart.

I was looking for food because I am always hungry. The food insecurity goes back to infancy. Maybe to the womb: my mother says she was not to gain weight and spent the entire pregnancy longing for a gigantic ice cream Sunday. Think of being in a womb, attacked by antibodies to tuberculosis, and starving all the time. Might be a little bit worried when birth happens. Fuck, I am going through a tunnel, what horrors await me here? But maybe there will be more food.

Maybe someone will love me. Maybe there will be someone for me to love. And feed. We can give each other food.

My advice to you is don’t be the ball. I was the ball for 21 years. I was so hungry the whole time, for food and for love, that I kind of noticed but dismissed it as unimportant. Food and love were more important. Work and my patients were more important. You don’t matter and your games are trivial.

It will be the weakest one who will be the ball. You worry that you are the one. You should worry. You had better look strong right away. Post some horror. Write something really tough. Don’t show anyone any niggling doubts. Um, the ball is wearing oxygen. I am feeling a little bad about this. Are you feeling bad about this? The ball isn’t just crazy, it’s hurt. Actually crazy is an illness too: I know that you discriminate and think that cancer is a legitimate illness and that mania isn’t, but you are assholes. No, you’re too small and pathetic to be an asshole. You are a one celled animal that is clinging to a hair on an asshole and you get shat on daily. And you know, deep deep in your tiny shrunken heart, that you deserve it.

I am so glad I am not you.

I am tethered to oxygen. But I am healing. I don’t think you can. You are locked in your small sick pathetic triangulation competition and pretending that it’s a game that it’s ok that you are just playing.

Ick.

Meanwhile, the oxygen is portable.

I have food and I have love and I have work to do that lifts me on wings. I will go too near the sun and light on fire and fall burning, but that’s ok. I’ve done it before. The ocean heals me, always. It is so much fun to fly!

This is in memory of my mother, my father and my sister. I miss all three and I love them and they love me. Today is the day my mother died. The longer we live, the more days are days when someone that we love died. But they are still here. They are in the rocks and the sky and the trees and the coffee cup. They are not in sugary donuts or foods that cause heart attacks. But they are all around us, cradle us, still love us. Joy to you and the memories of your loved ones who have gone on. Blessings.