Thursday, November 16, 2017

The Samsara of Healthcare

I was scanning through some old posts from a few years ago and noticed one that is particularly relevant -- STILL -- to today. It has to do with government and entitlements and the ongoing threat we face from Republican economic policies and a culture that is all too willing to sacrifice the vulnerable while exalting the already fortunate.

I don't know what to do about this and feel not so much defeated as overwhelmed with the ongoingness of it. I'm currently working with a health insurance broker trying to figure out our 2018 health insurance options as our current plan raised our premium by 39%, making it unaffordable. The capitalists love to talk about "consumers" going "shopping" for health insurance, and "competitive rates," etc. -- all that market talk, reducing us to numbers. I can tell you that scrolling through plan benefits, trying to figure out what coverage would be for Sophie's various needs, reduced me to tears, and I'm no wimp.

I maintain that access to affordable healthcare is a right. I maintain that we shouldn't be looked on as consumers when we access healthcare. I maintain that shopping for healthcare insurance is ridiculous, that despite my college education, formidable intelligence and decades of experience navigating all the systems of care, I am literally overwhelmed by it.

What, really, do I know with my tiny little mother mind™?

If there's anything to substantiate the Buddhist notion of samsara, I guess it would be this.

Here's the post from a few years back, and the article that I referenced in the first paragraph could just as easily be replaced by any number of articles and notices in today's newspapers regarding the threats to Medicare, IHSS and SSI under the current Republican tax reform proposals:

I read this article this afternoon as I languished, a bit sick, at home. For the record, I did do some part time work and home-schooled Oliver in American history and writing. The article was titled Aid to Disabled Kids Surpasses Welfare and states that the amount of federal money going to disabled kids through Supplemental Security Income programs has surpassed traditional welfare programs. You can imagine what this means. There will be people (conservatives) talking about corruption and those who milk the system and rely on government benefits, who don't use their bootstraps properly, who go on vacations when they find out they've qualified for disability and who are otherwise, losers. They will claim that the increasing numbers of children diagnosed with mental health issues, ADHD and other disabilities should actually be parented differently.

There will be people (liberals) blasting the conservatives for once again targeting the vulnerable, blind to white collar corruption and to military expenditures and waste that probably surpass the GDP of most second and third world countries, much less welfare and SSI expenditures. They will talk about the shrinking middle class, how the poor, truly cut off from welfare as it was once known, depend on SSI to even make ends meet.

What you probably won't hear, though, are the voices of those who benefit from SSI programs, many of whom are, literally, without voice. You won't hear about how difficult it is to actually get the benefits, how much education you have to have to parse out the requirements, and in the absence of education, the sheer stamina and persistence  to make sense of the paperwork, to navigate the system, to continue to care for the child with disabilities, to plan for her future with or without you. You won't hear the voices of those who have to continue to make a case for needing the money each year. You will hear that these people are working the system, making up disability so that they don't have to work, that their numbers are growing and America will go bankrupt dealing with them.

First of all, you know that I've a liberal voice, and my voice also happens to be Sophie's voice, since she doesn't have one of her own. Sophie began receiving SSI benefits monthly when she turned 18, the bulk of which I use to pay for the huge drug co-pays that her insurance company doesn't cover, any other medical treatments that her insurance company doesn't cover, her diaper wipes (I pay for her diapers with my own money even though they're covered under MediCal) and various toiletries, occasional clothing and apps for her iPad that she uses at school. Last month, I used part of the money to help pay for her two weeks at communication camp. I realize that some of this is luxury -- she could sit at home in her stroller (also partly paid for by SSI), next to me at my desk as I do my part time work instead of going to camp for three hours. Since I've never found a dentist that provides adequate dental care under Medi-Cal (Sophie receives dental insurance under Medi-Cal but none through our private insurer), I chose to continue to see our family dentist. It's expensive, and in order to keep Sophie's mouth healthy and because it's very difficult to brush her teeth adequately, we pay out of pocket every three months for a cleaning. The SSI money helps with that as well. Sophie's needs are met with a combination of government funds and those earned by her father and me, as well as generous donations toward her care given to us by my parents. I know that there are many, many people out there like us, making ends meet, not abusing the system and grateful for every bit of help -- both private and public. I know that without the combination of funding sources, many of us would have to resort to going into debt, to living far more stressful lives than we already do and to turning our children over to institutional care so that we, their caregivers, can try to find full-time jobs.

I understand that the system will always have corruption, and that some people will take advantage of that system, lie and cheat and steal in order to get something for free. I understand that part of my tax money is going to help the liars and the cheaters and the thieves, but I have a feeling that the vast majority of those that use these funds are doing so responsibly and because they very much need them. I understand that part of my tax money also goes to fund bombs and arms and war apparatus, even if I don't support those wars. It's a sort of price I pay to live in the country that I live in, a democracy where I supposedly vote for the representative that best works in my interest. I understand that people (and I know some of these people) who have millions of dollars but who are also veterans continue to collect what they're "owed," and while I believe that is pretty low-brow, even repellent, I also believe that my taxes go toward far more veterans who, after serving their country, are out of work, homeless, mentally ill, permanently injured or otherwise in need of them. For every Mitt Romney pumping money into tax havens or writing off dressage horses, there are countless businessmen and women getting into their cars and going to work, collecting their paychecks and paying their taxes.

What's the point of this post? Hell, if I know. I guess reading that article sent a frisson of fear into me. The fear is that the difficult job of caring for a person with disabilities in this country will get even more difficult. The fear is that this "difficulty" is really just a cultural construct -- that living in a nation that exalts individual responsibility to the exclusion of community makes my daughter's value recognizable only in dollar terms. The fear is the knowledge that she, and millions like her have to constantly prove their worth. I have certainly been proving her worth for the past nineteen years, and I suppose I'll have the stamina and grit to continue to do so, but damn. It's difficult.

Wednesday, November 15, 2017

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

23 years, beginning in infancy, four different benzos (Nitrazepam, Ativan, Klonopin and Clobazam),
zero seizure control,
high dependency, still being prescribed to babies and young children
despite little to no evidence of efficacy

The Price of Addiction
(deductible finally met in November because of MRI, etc., catalogued in The United States Medical System, Part One in a Series Through Photos
co-pay for drug over eight years has ranged from $0 to $780 according to the whims
of the United States Capitalist Medical System
where patients are consumers and the HHS Secretary is Big Pharma

Never Go Backwards
(went backwards at behest of Neurology BigWigs one year ago, a seriously fucked up decision)
backwards means once you start to wean, don't jack up the dose
backwards means after weaning 80% over three years, you jack up the dose to a larger amount than four years previously

Sunday, November 12, 2017

Sunday Reverie

San Jacinto Wildlife Preserve
Lakeview, CA
photographer: Carl Jackson 

I’ll tell you how the Sun rose –
A Ribbon at a time –
The Steeples swam in Amethyst –
The news, like Squirrels, ran –
The Hills untied their Bonnets –
The Bobolinks – begun –
Then I said softly to myself –
‘That must have been the Sun!’
But how he set – I know not –
There seemed a purple stile
Which little Yellow boys and girls
Were climbing all the while –
Till when they reached the other side,
A Dominie in Gray –
Put gently up the evening Bars –
And led the flock away –

Emily Dickinson

Carl Jackson's photographs are available for purchase here.
You can purchase notecards and prints here.

Wednesday, November 8, 2017

How We Do It, Part I've Lost Count

Look who decided to show up for dinner! 

That's what Oliver said in his inimitable Big O'ish way last night when Saint Mirtha decided to let Sophie sit in her regular seat at the table instead of the wheelchair. She's been fed in the wheelchair for weeks and weeks, unable to sit up very well or swallow properly, but over the last week and since I weaned her a bit more from the benzo Onfi, she's gotten stronger.

I'm grateful for my children's sense of humor, for Sophie's irrepressible life, for trust in my own instincts, for the generosity of family and friends, for the moments of grace when relief comes out of nowhere, for Virginia and New Jersey this morning.

Most of all, I'm grateful for all my people who do this thing we do and for their children who inspire and honor us. It's National Family Caregivers Month (or National Fucking Family Caregivers Month, as my friend S calls it). Happy NaFuFaCaMo, all you MoFuFaCas!

What do I think? I think we're on the right path for NOW, and there's really only NOW.

My friend Carrie Link sent me this video this morning. Natalie Merchant's album Tigerlily was released on June 20, 1995. I listened to her song Wonder over and over throughout Sophie's infancy and childhood. I realized today when I looked up that date that it was the day we left the hospital after her diagnosis on the 14th of June, 1995.

As Carrie says, there are no accidents.

Doctors have come from distant cities just to see me, stand over my bed disbelieving what they’re seeing. They say I must be one of the wonders 
of god’s own creation and as far as they can see they can offer no explanation.
Newspapers ask intimate questions, they want confessions. They reach into my head to steal the glory of my story. They say I must be one of the wonders of god’s own creation and as far as they can see they can offer no explanation.
I believe fate smiled and destiny laughed as she came to my cradle, “know this child will be able.” Laughed as my body she lifted, “know this child will be gifted” with love, with patience and with faith she’ll make her way.
People see me; I’m a challenge to your balance. I’m over your heads; how I confound you and astound you to know I must be one of the wonders of god’s own creation, and as far as you can see you can offer me no explanation.
I believe fate smiled and destiny laughed as she came to my cradle, “know this child will be able.” Laughed as she came to my mother, “know this child will not suffer.” Laughed as my body she lifted, “know this child will be gifted” with love, with patience and with faith she’ll make her way.

Sunday, November 5, 2017

Update from the Cloister

See enough and write it down

Joan Didion

Can I tell you who Sophie is and how I know? Can I tell you that she looks directly at me, her eyes dark pools her life behind them something vast even as it is cloistered? She loves the way trees blow in the wind the feel of beads slipping through her fingers like water and water, the ebb and flow of ocean tide. These days, even as she struggles to move, her left leg dragging, her eyes are as piercing as they've ever been. What is that?

Here's the plan: Wean the Onfi. She is over-medicated with it, the drug that I suspect is the culprit in her decline. Order The Ashton Manual (thank you Christy!) Play with the CBD oil and add in a bit of THC.  Be grateful for the grace of friends, for mindfulness meditation, for love and resilience and the strength of the heart. 

Onfi needs another name, a moniker of dread and dependency. I took away a small bit nearly two weeks ago, and this weekend was an extraordinary one. Sophie ate well, swallowed well, reached for her cup and drank well. She walked down the street with me and always her gaze -- her clear and resolute gaze. No seizures.

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

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.


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