Art and Chaos

Somewhere over the western continental United States
2018

And we are put on earth a little space,

That we may learn to bear the beams of love, 

William Blake

When I meditate and lose my breath and go to thoughts they are like tendrils in some dark soup, like fish swimming by, my hook vain. I make them clouds to float, to find my breath again. My thoughts, my brain. I flew back to Los Angeles from Spokane. I looked out the window to see what appeared to be an ordered universe -- neat squares, rectangles and the occasional parallelogram colored in rich browns and greens with wispy clouds floating above. It might have been a brain, thoughts packed tight. In service to breath, become clouds. And then right there, a branch cutting through, tendrils, neurons, synapses, whatever. Threaded through and broken. It's always about the brain, isn't it? Sophie's brain and mine. The word riven. The word wisp. 




Have you been listening to our podcast, dear Reader? This week's episode, Art and Chaos is with the brilliant artist Mimi Feldman. She is the mother of a young man who has schizophrenia. I think it is one of the most interesting conversations that I've had in my life. I feel humbled by her experiences and enriched by her story. I believe fervently that people's voices -- the telling of story -- connects us to one another.

Read about and listen to Mimi's story here.  I promise you will leave enriched beyond your imaginings.


If you have been listening to Who Lives Like This?!, what do you think? My partner Jason and I are having so much fun doing this, but our intention is to also build a real community. We need your help. We're not making money, but we'd like to continue to build the podcast and the community and improve the quality and -- well -- continue doing it. If you're so inclined, please consider supporting us through Patreon. You can pledge as little as $1 a month!

Here's the link to Patreon.

Henry and Oliver took me out to dinner for my birthday -- Henry on the last night in Spokane where I left him to begin his second year at Gonzaga, and Oliver here in Los Angeles, last night.

I know ya'll like my sons almost as much as I do, so here are a couple of pics:

I've run away and found my dream house

Who knew that it would be in Spokane, Washington?

My new home is named Gilda, which happens to be my beautiful, now-deceased aunt's name. She gave me a copy of The Hobbit when I was seven years old and made my first holy communion, which I promptly read and -- well -- you know the rest of my history of reading. I tell you this because I have always loved the idea of hobbit residences, small cosy cottages, and this is exactly my dream house.

In all honesty, I am up in Spokane helping to move Henry into his new dorm room. I didn't think he wanted me to come up with him this year, but when I asked him what day he needed a plane ticket and he said, Aren't you coming with me? and I said, Oh, do you want me to come with you? and he said, Yes! I want you to help me and also meet my roommate! and I said, Well, I guess. Ha ha ha ha ha. Do you want to?

So here we are. Unlike Dream House Gilda, Henry's new dorm room is named The Ugliest Dorm Room in the Disunited States of America.

Notice the blue PLASTIC curtains. I won't share the picture of the communal bathroom out in the hallway. I snuck inside to use it and was barely able to sit down on the toilet without my knees hitting the door. I was literally about one inch from reading the Potty Talk Newspaper that was taped on the door, educating me about social justice issues. Today we will be shaping up the ship, visiting Target. I'll post an "after" shot, but in the meantime, know that the two guys living there will lend it a degree of beauty that it might never have seen.

Fun fact: Henry's roommate has several siblings with special needs and is, according to Henry, the nicest person he's ever met. 

That's either completely wild and random or, there are no accidents, as my friend Carrie says.

Everything Connects Us to Everything Else

so said Leonardo da Vinci, and he wasn’t kidding.

The Neurologist called last night, after I’d posted (scroll down for yesterday’s post) and confirmed what I’d suspected, that Sophie is having another occurrence of ESES. My instincts were correct, I was right, Sophie’s “decline” is due to that and she will be treated with Intravenous Immunoglobulin — infusions — and hopefully it will be resolved. The Neurologist was sorry, and I am not angry with him at this point. Yes, he should have read the report two months ago, so Sophie could get treated. All of it, every single bit of it, is emblematic of — well —  everything in our world from diagnosis to medical education to our notions of what it means to be human to the commodification of healthcare to inequality to current politics to the differences in the notions of curing and healing to perspective and privilege and grief and grace. As for anger, I  have little space in my heart and brain for that today. Maybe later. Maybe in my next life when I come back as a stoned woman in an azure bikini and surf all day long and love the Bird Photographer and read poetry all night. So, maybe never. The Neurologist is incredibly supportive of our use of cannabis, and that is everything. I’m not in the mood to tell you about ESES today — if you’re interested, you can look it up on the internets. There’s very little known or understood about it, so you won’t be overwhelmed with information. You might wonder why cannabis doesn’t protect her from this bizarre epileptiform activity, and so do I. I do believe, with The Neurologist and Dr.Goldstein, that Sophie is having the least amount of actual clinical seizures in her life. During her last two bouts with ESES, she was having up to 7 giant tonic clonic seizures a day and hundreds of myoclonic ones.

I freaked out last night, had an hour or so of the past 24 years collected in my body brought to the surface, and it was Henry my son of twenty years who comforted me. Rather, we comforted one another. I’m so sorry, I told him. I’m so sorry for all of this. Henry, lying beside me, said, it’s okay, Mom! It’s made us who we are. Which is so good.

How We Do It, Part I've Lost Count

I find myself babbling cheerfully to the barista at Ralph's about sugar addiction. We talk about white peach and green versus pineapple and black, and she says the pineapple is popular so I pick that. The more you eat, the more you crave," she says and I agree and she puts only one pump of sweetener in mine instead of the six that is called for in the recipe. Behind my sunglasses are tearburned eyes. I've just had a harrowing ride home in the car with Sophie. I had picked her up from the day program in a bit of a state. I contemplated driving straight to the emergency room of any hospital to admit her for another weird episode of Unable to Swallow Well and Therefore Laboring a Bit for Breathing and admit me for despair. Instead, I continued to drive home in some of the worst traffic The City of Angels has to offer, rubbing her back, wiping her drool and speaking sharply to her to both Cough! and Come ON! and then called the neurologist's office to yell at the receptionist about The Fact That I Have Still Not Received The EEG Report Which Was Done On July 4th. I didn't really yell, but I got upset, and she said to hold on and I'll speak with my supervisor, and then The Neurologist got on the line and in his gentle way apologized and said that he'd review the report and get back to me tonight. I've learned by now, in this the 24th year of caregiving that it Pays To Be An Assertive Unreasonable Bitch and you can always throw in a I know it's not your fault, but I'm tired of this, and I feel like no one cares and I am doing all the caring and the work, and I'm losing my mind. That's what I said to the receptionist who then left for her "supervisor," and lo and behold, The Neurologist, and that's what I said to him, too.

So.

When I drove up the driveway to my house, I jumped out of the car and ran around to the passenger side and dragged Sophie out and carried her to the front door and considered screaming for help but instead pounded on the door. Saint Mirtha opened it and helped me carry Sophie back to her room where, for the next half hour, we coaxed her into coughing and relaxing, and I don't know what else. The suction machine was involved but it's psychological, like everything else, I'm afraid. You're doing something! You're making an effort! You may wonder why I didn't let The Professionals take care of this, but you might also dig not so deep (just a few shovels) if you know me and very deep (all the way to China) if you don't, to figure out why.

Meanwhile, Sophie fell asleep for a bit, quite peacefully.

I'm going to go in my room and cry, I said to Saint Mirtha, and she said, Elizabeth. I lay on my white bed and wept through the eyelet of my white blouse and then I got up and walked to Ralph's where, like I said, I noticed how inane my chatter is when I am most in despair and where, I've also noticed, the eyes of men who work unpacking crates of beautiful vegetables follow me, right through my dark glasses like they know and love sorrow, a sad-eyed woman. I bought thick-cut bacon, tomatoes and tortillas for BLT tacos and walked home.

Sophie is awake and has eaten dinner like normal, and I wish I was (or is it were?) an angel and I'd fly back somewhere, anywhere, but here.

PSA for These Difficult Times

Letting my snaggle tooth hang out

You're exactly where you're supposed to be this moment. I tend to project all my fear out into the future, but you know what? It's my present that's terrifying at times, and I have to tell myself that I'm exactly where I'm supposed to be this moment, over and over and over. Sometimes cliches are necessary.

Here's the PSA part of this post:

Do you listen to The Daily? It's a daily podcast that digs deep into a pertinent issue for twenty minutes, five days a week. The New York Times does it, so I suppose some of you out there reading will say it's fake news or liberal biased media or whatever lazy cliches are being thrown about. I say lazy because we're all subject to lazy, particularly intellectual laziness, and these times call for us to gird our loins and pay attention and read quality journalism and listen to careful, investigative work. I think The Daily does important reporting, and from what I've listened to for many months, it appears to cover sides of an issue when that's pertinent but also THE FACTS as they appear to our eyes and ears.

Truth is always truth, contrary to what you might have heard out of the Powers That Be's very own mouths.

Today's podcast was Part One of a two-part series called Divided: How Family Separations Started, 

and it'll blow your mind and break your heart.

Recently, I wrote a post detailing my happiness at Sophie finally starting her new adult day program. One of my Anonymous commenters wrote this:

What, you are happy with a great program for Sophie. That is wonderful. But what about all the children separated from their parents at the border?

I replied:

Anonymous, what do you mean? Have I forgotten that our government kidnapped thousands of children and put them in internment camps. Never. Doing what I can — do you need info or resources on how you can help them?

I suspect that this is the same Anonymous who spent a lot of time on an earlier post of mine defending the separation policy, so I'm hoping that she listens to the podcast. I wonder, too, whether her feelings about the great tragedy on our borders have evolved at all. The reason why I'm wondering is because I think it's going to take as many people as possible to exact justice. Yesterday, the POSPOTUS himself blessed and spoke warmly to those who work for ICE and for their actions at the border. 

So what can we do about the clusterfuck beyond educating ourselves? The obvious solutions are to pressure your representatives to work toward reuniting these children with their families, to vote for those people who fight injustice, to donate money or even donate and subscribe to the ACLU, to protest whenever there are gatherings, to hold your government responsible, to speak the truth and refrain from arguing that there's any reason at all to separate any child from his or her parent because they are seeking asylum or a better life for their families and happen to have brown skin.

Here are some more ideas that I found on the Internets.

1. Become a child advocate.
2. Become a Court-Appointed Special Advocate (CASA) for young people in foster care or donate to your local CASA program
3. Donate to Comfort Case which gives backpacks of comfort items to kids in foster care
4. Volunteer to visit people in immigration detention.
5. Help transform your faith community or business into a sanctuary space.
6. If you happen to be a lawyer, paralegal or law student, a number of organizations are looking for pro bono volunteers.

Click HERE for more information and links to explore the above.

The Daily

#familiesbelongtogether

#resist

Cosmic

My best friend is keeping vigil as her mother lies dying from a terrible cancer. "Why is life so difficult?" I ask Sophie as I heave her into the car. I might have said hard. Sometimes I feel like a monster. Sometimes I am a monster. Heavy. This morning I slept with and woke to the stars. That's what it feels like. The space he brings me. "Are you flying?" he asks, and I say, "No, it's not like that." I want to say soar. The word weightless. 

There's Everyone

La Brea Blvd. Los Angeles

I have been revising my "book" in the main library in Santa Monica. I wander past the main desk and the new books and walk up the stairs to look for an empty table. The library is filled with the homeless. They sit at the tables and in the few easy chairs. They shout at one another and murmur to themselves. Last week a man shouted and yelled and was forcibly removed, but no one looked up from their places as it was going on. Neither did I.  I sit at an empty table and take out my computer and the manuscript. I am typing all of it, from the beginning, into my laptop, revising and writing into and out of this decade-long effort. It's called There's Everyone and Then There's Us.  I sit down in a seat with my back to the library and the shelves of books, and I look out a big window at the palms swaying outside. A man's angry voice cuts into the quiet behind me. Why the fuck are you up here? he shouts, and I will myself not to turn around. A woman murmurs something to him, and he raises his voice more, slaps his hands together, and for a moment I think he's hit the woman. I've been looking everywhere for you and you're fucking here. You said you'd be there. The woman protests and the man keeps it up. He repeats the same sentence over and over. I've been looking everywhere for you and you're fucking here. You said you'd be there. I turn around, catch his eye. Oh, sorry, he says. She is surrounded by things. Paper bags stuffed full, a backpack, a small rolling suitcase. I don't see what she looks like because I avert my eyes. I only see her things. I turn back to my computer. Get out of here and don't come back, the woman says. I don't turn around, but there's quiet. A man with tight black curls, a red-checked shirt and black cotton pants stumbles along the wall behind my table and sits down across from me. He puts his hands in his lap and looks down. He has headphones over his ears, the giant squishy kind, and I can hear some tinny music through them. He fidgets and moans a bit, bangs his hands on the table and then places them again in his lap. I look up from my typing, try to catch his eye, but I don't. He smells of the street, but what do I know, especially, of the street? I know nothing.

He sits there with me, or I with him, for the next three hours.

Tuesday Evening Tiny Little Mother Mind™ Peach Pie and Miscellany

In case you're wondering, Sophie continues to enjoy her new community-based adult day program. Today, she and a group of other clients went to the California Science Center. They rode the train downtown, and evidently Sophie loved the ocean room. Of course.

I took this picture this morning. I love Sophie's hands. They are so delicate and fine. I wish that she could use them more.

This sign made me smile and roll my eyes. It's hard to believe what's happened in the last five years in the cannabis medicine world. That being said, I heard about a neurological/pharmaceutical conference recently where the Powers That Be spent a good amount of time denigrating the CBD oils that we've been using for so long. The usual Two-Faced Neuro was there, sort of my nemesis if I really gave a shit anymore, which I don't. He was doing his thing, and this tiny little mother mind™ was doing hers.

Surprise, surprise. I hate to be cynical, but these guy and lady docs are about as cliche as the older man who has an affair with a younger woman.

Recently, a newspaper article touting the benefits of Epidiolex, the new CBD-only single-molecule pharmaceutical approved for Lennox-Gastaut and Dravet Syndrome, quoted a physician who said something to the effect of the "artisan oils" being used were "impossible to test." I don't mince words. What a load of crap. If crap could be, it'd also be transparent -- so clear that Big Pharma and the stooges in the medical world are busy, busy, busy undermining everything that's been done. Telling lies. Propaganda.

Don't get me started.

I made a peach pie today. It's one of the monthly offerings in my gig as baker for Everyone Needs Cake,™ in this case, pie. I took the skins of the peaches, Reader, and honestly? It was like slipping off a silk nightgown.

I tossed them in sugar and whiskey and let them sit for a bit.

I cooked the juices that collected after they sat for a while, added some cornstarch and cooked that up. Then I rolled out the pie dough that I'd made earlier and dumped the peaches in. I made a lattice with the other disc of pie dough and then I froze the whole thing for a couple of hours.

Here's the finished product -- perhaps a tad too brown in places, but my God! Those naked, cooked peaches sure smell good!

Monday Morning Three Line Movie Review

BlacKkKlansman

I hesitated to even write a review for Spike Lee's new movie because I had so many ideas about it, most of those ideas are floating through my brain like guppies waiting to be swallowed whole by a whale and because -- well -- critiquing it is as overwhelming as the feelings provoked by it. I just wasted a sentence, though, on a movie that deserves, probably, an academic treatise, such is its complexity and craft, and while I didn't think it perfect by any stretch, it made me feel uncomfortable and that's exactly what a movie about race in America should do to a white woman. I don't think there's any need to explain why I felt uncomfortable (and it's a good thing to be white and feel uncomfortable today), but when I wasn't feeling uncomfortable, I was lifted up in spirit by Spike Lee's ability to meld so many seemingly disparate things -- the power of image to influence people, the power (and not so subtle warning of the power) of image in cinema, in particular, to even let people off the hook from truly regarding racism, in this country, the power of laughter to both highlight and horrify, the power of the patriarchy, the obeisance to the patriarchy by even those who are being oppressed, police brutality, anti-Semitism, Trumpism, music and culture and fashion -- into a piece of art that left me feeling both exhilarated and drained.











More Three-Line Movie Reviews

Far From the Tree
Sorry to Bother You
RBG
Won't You Be My Neighbor?
Learning to Drive
Love and Mercy
Not a Three Line Movie Review
While We're Young
Ida
Force Majeur 
Gone Girl
Saint Vincent
Get on Up
Begin Again
Chef
The Immigrant
Cesar Chavez
The Grand Budapest Hotel
Gloria
Labor Day 
Philomena

August: Osage County

Her

American Hustle

Caregiver Sandwiches and Who Lives Like This?!

Have I told you how much fun it is doing the Who Lives Like This?! podcast? Honestly, if I made money doing it, it'd be a dream job. My partner Jason Lehmbeck and I get to talk to the most amazing people and have funny (sometimes hilarious) informative conversations not just about caregiving and our unique situations but also about life itself. This week's podcast was with Laura LeBrun Hatcher. We covered a bunch of topics -- what it means to be a caregiver of a child with complex medical needs, "The Caregiver Sandwich" when you are taking care of a child with special needs and aging parents, genetic testing and grappling with diagnoses. Laura is a designer as well, the head of communications for the amazing advocacy group Little Lobbyists (did you know that they were instrumental in maintaining the Affordable Care Act last year?) and -- well -- the list goes on. I hope you'll listen to the podcast, leave a review for it and share it with your friends and family. I'll give you a prize if you come back here after listening and answer this question in a comment:

WHAT TYPE OF CHEESE WOULD I BE IN A CAREGIVER SANDWICH?


Here's the link to the podcast blog post where you can click and listen, too:

The Mysteries of Undiagnosed Conditions and Genetic Testing with Laura LeBrun Hatcher

Hallelujah on Adult Day Programs That Come Through and Gratitude for Your Tax Dollars at Work

at the Hammer Museum, Los Angeles

I wasn't going to say anything until it was a done deal, but it's a done deal for the most part and Sophie has finally started her day program in Santa Monica.

This is big.

This is HUGE.

Sophie "graduated" from the LAUSD over a year and a half ago. She's been on a waiting list for years for this place, got a place and then we basically had to wait a million years for the right aide and the right paperwork and the right funding and you know the drill. Sophie has been at home with me and Saint Mirtha for all this time, and I can tell you that I'm a really boring mother at this point and an even more boring entertainer/cruise director/activities coordinator. I'm not lying. I am as burnt out as they come, and I'm making no apologies for that. Catholic girls have enough guilt flying around their parts to cover it, and while I've sworn off the Catholic church, I can't swear off the guilt. Saint Mirtha's got some chops in all those fields, but Sophie has basically been hanging around us or a bunch of toddlers and babies and nannies at the neighborhood park. Nothing wrong with that, actually, as Sophie is very interested in babies, and I've fantasized about her taking on a second job (when she gets off her Uber shift) as a baby whisperer.

But this day program is the bomb. It's community-based, so the young men and women go out everyday into the community and do stuff. If they're able, they work, go to the YMCA and work out or learn a trade. If they're like Sophie, they go to museums, the park, the beach, have music therapy, learn self-help skills, learn how to better communicate their needs and -- well -- make friendships and enjoy their lives.

on a Metro bus, on her way to the mall

The drive to the program is pretty brutal because I live in Los Angeles and the program is in Santa Monica. I'm talking about 9.8 miles but forty-five minutes on the highway, but I'm happy to drive to the proverbial Timbuktu if it means Sophie is happy and getting what she needs to lead a good, dignified life of value.

I found out today that she has several classmates from her PRESCHOOL in an LAUSD program at UCLA. That was back in the last century! I've lost touch with nearly all of those families in the last twenty years, mainly because we don't live on the west side where most of them still reside, but I have such good memories of those early days, and I'm thrilled to get acquainted again. Sadly, several of the children that Sophie began her school years with have passed away -- in those early childhood days, it was not unusual to go to at least one funeral a year of a young person. Looking at these grown men and women and imagining all that they've been through is emotional for me in bittersweet ways.

Saint Mirtha is training Sophie's fabulous new aide, Lauren, this week. I dropped them off both mornings, went for a walk on the beach and then did some freelance writing work yesterday, another interview for a possible job today and then -- wait for it --

began revising my manuscript at the public library.















The universe is abundant.

Happy Endings

Carl and I go regularly to a little Thai massage parlor in Koreatown. It's on the second floor of a strip mall. It's quiet inside and turquoise blue. There's a spot on my back, when you run your finger along it, that makes my whole body shiver. There's a place on my leg that would weep if it could when you apply any kind of deep pressure. The body is a storehouse for sorrow, the skin a map. Run your finger there, push your hand down here and tears leak out of my eyes, slant over the rise of my cheeks and pool in the curl of my ear, a seashell roar over the piano music dripping.