Monday, October 30, 2017

Magnetic Resonance Imaging

It looked like a flower a jewel a prism a kaleidoscope of pink and red and green a mustard yellow. So beautiful it brought tears to my eyes. This part here, The Neurologist said, should be like a bush and it's more like a fern. The language of plants. I stood behind him, peering over his shoulder. My daughter's brain a bloom on a screen, his finger (or was it a pen) brushing along its tendrils, a fern not a bush. Space, too. Too much space there and there. How do I write this or do I not write this? Of course I will write this, me with the words, the ease of them. Call a flower tree and a tree flower (so I thought, lying on my back in the green grass of childhood) and what if we were just God's dream (God, not god, back then) and this, that, was a sort of dream. Calling a brain bush and bush fern. Standing there looking over his shoulder, my daughter's brain a bloom on the screen. The word atrophy. The feathering of a fern where there should be bush. The word cerebellum. I felt sick to my stomach for a moment, standing there, the dots in front of my eyes. Or was it faint? I need to sit down, I said, stumbled around the wheelchair and sat on the couch. I closed my eyes when he spun around on his chair. He's a nice man, a smart man, an honest man. Interesting that it was the tears that flustered him, not the brain a bloom on a screen. That's the way they are. I closed my eyes, heard him rummaging and then leave the room. Back in, he handed me a stack of paper towels, the brown rough ones from the bathroom. I thought that was funny. I really did. I thought it was funny. I'll write it all down, I thought, and then out. I'll build some kind of tension here on the page to mimic that in the room in the brain a bloom on the screen. Atrophy of the cerebellum. We'll need to compare it to an earlier scan (that I'll have to find, to root out from the bowels of some other hospital). The language of medicine mixed up with the language of business the language of poetry.  And I a master of all of it nodding my head words blooms from my mouth. On the written report: indicative of epilepsy treatment. I always knew it. The word treatment. Just to be clear: Sophie's recent magnetic resonance imaging showed a couple of troublesome spots, including atrophy of the cerebellum. This could account for her gradual decline in motor abilities (walking, coordinating movement, balance, swallowing). The cause is uncertain -- too many drugs? long-term use of benzodiazepines? underlying metabolic disorder? genetic mutation? -- as always.

How do I write what comes next? I still have some tricks up my sleeve, The Neurologist said, and I laughed. I really did. I thought it was funny. Should they use phrases like this? Me with the chalked hands and the pirouette toes up on the high wire for decades. You as spectator your breath held.

Bloom, brain.

Saturday, October 21, 2017

Everyone Needs Cake™

I'm baking cakes again.

I made cupcakes today, too.

I've hatched a plan to make two specialty cakes a month and deliver them for free within a certain mile radius.

This month I've got a

Halloween Red Velvet Cake with Marshmallow Buttercream and Meringue Ghosts.

Here's a photo that I lifted from the internets. I have no idea where it came from, but I made one like it a year or so ago, and it's awfully cute.

Here's the flyer that I made to advertise the cake baking extravaganza.

I don't ship but I'll put you up for a night if you decide you need to have one.

Everyone Needs Cake™

Thursday, October 19, 2017

The Gig Economy

In Ring Three of The Greatest Show on Earth:

So, in keeping with the general zeitgeist, Sophie will be driving Uber from here on out. That's because she needs to start pulling her own weight and stop taking hand-outs. She's a drug addict as well and needs to take responsibility for her actions. As her parent and primary caregiver, I do, too.

We just received notice that our private insurance company, Blue Shield of California, is jacking up our plan 40%. According to my very experienced and reasonable broker, it's due, in large part, to the sabotaging of The Republican President (that's what I'm calling him now as he was voted in by those people and is tolerated by those people and is supported by those people) over the last nine months. Yes, it's a whole lot more complex than that, and premiums for private insurance policies continue to vex the greatest minds, but that's what They should be working on. But, hey, what do I know? I certainly don't want the gov'mint coming between me and my doctor.

I've come to the conclusion that Sophie is over-medicated, that her brain has been damaged by long-term usage of benzodiazepines and so we must continue to wean her from it.

In the meantime, I will be shelling out even more of a co-payment for the benzo due to new health insurance rules that only allow a 24 day supply instead of a 30 day supply (something about the liquid form and not being able to open a bottle or give part of a bottle) and so that means more money for the drugstore and the drug manufacturer and the insurance company, more money because the drug, ineffective in controlling seizures, is powerfully addictive and could literally kill Sophie if stopped. We are, basically, slaves to it and to the whole shebang, the Greatest Show on Earth.

Hence, the Uber gig. Who's driving with us? We're thinking we can fill it with clowns and drive it over a cliff.

Wednesday, October 18, 2017

The United States Medical System, Part One in a Series Through Photos

October 5, 2017
MRI of the brain with anesthesia
Cedars Sinai Medical Center
Sophie, 22 year old woman
refractory epilepsy patient

Tuesday, October 17, 2017

REAL with Diane McDaniel

Passion is the bridge that takes you from pain to change
Frida Kahlo

Last week, I sat in Diane McDaniel's backyard studio and had a wonderful conversation for her really interesting podcast, REAL. I love that women everywhere are working and expressing themselves in novel ways, and I am honored to support those like Diane who are digging deep into life and helping to share stories.

Here's the link to the episode Elizabeth Aquino Who Am I Without All Of This  on a few different distributors. Listen to the other episodes as well because you'll find so much that is interesting, stimulating, alive and REAL.

Friday, October 13, 2017

How We Do It: Part ? in a Series Where I Call on the Hive Mind

For how could one express in words those emotions of the body?
Virginia Woolf, To the Lighthouse 

I need the hive mind as collective unconscious, acting in community and sharing in resources and thoughts. I don't need conformity or group-think. There are two ways of seeing the hive-mind, and I'm not seeing it as pejorative. That being said,


I just had a little bit of a freak-out after trying to feed Sophie. I've written before about this, but things that used to come easily to her: eating, drinking, swallowing, walking, going to the bathroom (pooping), reaching for things, generally moving, are sporadically and inconsistently difficult for her. 

Let's cling to the word inconsistent.

I can't do this anymore, is what I said on the phone just now. I am reaching back to the past, to all the times that I couldn't "do this anymore." I leaned my head on the wall. I was sitting in a chair in my bedroom on the far end of the house, the farthest away from the front end of the house where Sophie sat in her chair. I couldn't do it anymore. I couldn't do it anymore back on the fourth floor of the walk-up on West 73rd Street in 1995 and placed the screaming baby in the middle of the bed, then walked into the bathroom and turned on the shower and crouched on the floor next to the toilet. There is something very primitive about not being able to even feed your child, I said on the phone just now. Soft egg lay all around Sophie's wheelchair and the dog lurked at my feet, trying to edge in. I remember Sophie pacing around her room like a drooling tiger back when she was on the ketogenic diet and I'd come into her room with a tiny ceramic dish of frozen butter and a slice of strawberry on top that was her meal. The brutality of that time. Eighteen years ago. Those two examples suffice.

My point is that I can't do this anymore. (You know I can).

So, hive mind. What is going on? I am waiting for the results of an MRI that Sophie had last week, but I'm pretty certain it will be inconclusive. Her most recent EEG shows nothing more than the general fuckery of Lennox-Gastaut syndrome and the seizure pattern that she's had for more than two decades. She is, actually, doing pretty well on the clinical seizure front, given her history. Does a body just finally tire out from all the shit? I am suspicious of Sophie being over-medicated. There's the Onfi, the Clonidine, the CBD, the THC. 

Please buzz together and by yourself. Send me your thoughts. 

What does it mean then, what can it all mean? (more Virginia Woolf, from To the Lighthouse)

Monday, October 9, 2017

What did I know about anything?

I was in Spokane this past weekend, visiting with Henry for Family Weekend at his university. It was fall in Spokane, and the colors were brilliant.

I don't know what I felt -- joy, certainly, in seeing my son again, but there was something else, something faint and melancholy and in-between.

You know very well what it is. Was. That lonely feeling. There's not much time between now and then. I remember what it felt like, to be so new.

The hotel where I stayed had paper-thin walls. I drifted toward them in the morning, a ghost with a toothbrush I held still in my mouth, breath held, the lovers on the other side breath less.

It only takes a few trees on fire, sun-dappled leaves, just so, to make me eighteen again and wistful. The word hesitant. The word restless. The word yearn.

I'm a mother now, watching my son move forward.

Here's a poem that I can't get out of my mind.

The Five Spot

There’s always a lesson to be learned,
whether in a hotel bar
or over tea in a teahouse,
no matter which way it goes,
for you or against,
what you want to hear or what you don’t.

Seeing Roland Kirk, for example,
with two then three saxophones
in his mouth at once
and a kazoo, no less,
hanging from his neck at the ready.

Even in my youth I saw
this not as a lesson in keeping busy
with one thing or another,
but as a joyous impossible lesson
in how to do it all at once,

pleasing and displeasing yourself
with harmony here and discord there.
But what else did I know
as the waitress lit the candle
on my round table in the dark?
What did I know about anything?

Billy Collins

Thursday, October 5, 2017

The Bluest of Blues

Planetarium, Griffith Observatory
Los Angeles

This has been a difficult week, so after an unbloggable morning meeting and in lieu of weeping while driving around the shitty, I drove up to Griffith Park Observatory and bought two $7.00 tickets to two planetarium shows. 
I lay back in my chair and listened to the program about water and the planets and the stars. We began at the bottom of the ocean, and when a blue whale's shadow swam over me, the tears leaked out of my eyes and then the stars came out, the constellations, the moon waxing and waning, the world spinning even as my body lay, stardust still --
During the second, Ptolemy's crystal sphere shattered into a bigger universe, 
more stars 
the galaxy, 
something beyond.

Despair After Sadness
Despair is still servant
to the violet and wild ongoings
of bone. You, remember, are 
that which must be made 
servant only to salt, only 
to the watery acre that is the body
of the beloved, only to the child
leaning forward into 
the exhibit of birches 
the forest has made of bronze light
and snow. Even as the day kneels 
forward, the oceans and strung garnets, too,
kneel, they are all kneeling, 
the city, the goat, the lime tree
and mother, the fearful doctor,
kneeling. Don’t say it’s the beautiful 
I praise. I praise the human, 
gutted and rising.
Katie Ford

Wednesday, October 4, 2017

The Eradication of Hogs

This is a post about my son, Henry, with whom I am well pleased.

Actually, this is a post about my son, Henry, for whom I am bursting with pride.

Henry is a peacemaker. He is not one to get involved in conflict, nor to agitate. He is preternaturally good-natured and easy-going. He might be slightly averse to conflict. When I send him things of a political nature or ask him to take a stand, he either blows me off, says that he isn't an activist or mocks me (good-naturedly). He is absolutely right that I am annoying when I am most agitated about the issues that are important to me. Because I'm female and he's male, I consider that a win on my part. I strive to agitate and be annoying to men, to tell you the truth. I'm interested in smashing the patriarchy.

This afternoon, Henry sent me a series of texts documenting an argument he had on Facebook with one of his high school classmates. I'm no stranger to arguing with high school classmates. The ones with whom I've argued are mostly men and a few random females,  but I've long since quit engaging with them (the last time I did so and stayed respectful but asked uncomfortable questions, I was blocked, and the questions were never answered which to me is typically conservative Republican). I have other friends from high school, though, who occasionally screen shot their conversations with these folks and show me what they're talking about and oh dear Lord and bless their hearts.

Well, this post isn't about me and I don't want to spew contempt and vitriol, as is my tendency when it comes to some of the high school classmates. I was a sweet and gentle soul in high school, I swear, and I don't think those people (and it's not everyone in my high school) had any idea that a patriarchy-smasher was in their midst. How would they? Well, for one thing, none of them took honors classes.


This is about Henry and his initial foray into taking a stand about something and doing it so well that I could just cry.

It can't be easy coming of age during these particularly shitty times. Yesterday. My god, yesterday.

I obviously am not going to reveal what this high school classmate of Henry said, but suffice it to say that she supports the POSPOTUS and is an avid Second Amendmenter.

The following is Henry's response to her tirade about the usual blah, blah, blah that the pro-assault weapons folks always trundle out after a massacre. Henry began with: THIS IS ABSOLUTELY 100% a

Those last three sentences broke my heart.

She responded with some more blah, blah, blah that included the necessity of making hotel windows bullet-proof and the necessity of using assault weapons for hunting. Then Henry continued:

Then there's this:

Hence, the title of this piece.

Oh, dear Reader, how we laughed.

Henry, are you reading this?

You make me proud.

You are respectful, strong in your convictions and persuasive in your delivery. You wrote passionately and beautifully.  Thanks for kicking ass without being rude or disrespectful. People will say, why bother? and there will be days when you wonder why you do. You might even lose your temper and your mind, feel hopeless and useless and guilty of stirring the pot. You'll certainly wonder whether there's any use to any of it at all. You will never be sorry, though, to do the right thing, to stand by your convictions and for those who are vulnerable. You're woke as they say and on your way.

We old folks need you and your friends to step up and help us. We are grateful for your energy.

You are beautiful inside and out, and I love you more than you'll ever know.

Tuesday, October 3, 2017

Orgasms for Caregivers, Part 1 in a Series*

When the insurance company denies a claim for a drug that your daughter has been on for nine years (in its liquid form) and suggests (via its Pharmacists and Physicians Panel) switching to the tablet form of the exact same drug for coverage (in a form letter that you imagine is a sort of MadLibs), and your neurologist's office has a DESIGNATED PERSON who does the appeal for you.

* In addition to the afore-mentioned orgasm, this action on the part of the DESIGNATED PERSON is also filed under Inadvertent Ways of Apoplexy Avoidance Of Caregiver


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