Taking Care

I'm lying on my bed, next to Carl, who is going through his gorgeous photos -- birds flying everywhere, diving into water with perfect droplets making ripples, a whale breached in a sea of blue and my mind is lazy drifting except for one tiny fight there off in a corner, the corner of care. Care. Taking care. Sophie is getting her infusions of immunoglobulin this morning, her last treatment of the year and I've forgotten to tell Mirtha that she doesn't need to come until later because Nurse Hyo is here but they're all here and so this fight this tiny little fight in my tiny little mother mind™ commences, even as I lie in languor on my bed or because I lie in languor on my bed with birds and whales and nodding flowers. Everyone is always living their best life, I've said bitterly a few times in the last few weeks. And this is mine. The fight is small but it is mighty in that corner of my mind. Letting others take care of Sophie without feeling guilty, perhaps envious, even, of their facility. I stood next to Nurse Hyo and held Sophie's arm down, so thin that it really takes only two of my own fingers to span it, the vein so tiny yet so resistant. Two sticks and the rising bile, I turn my head away and curse the nurse in my mind, curse all of them or Them, with emphasis. Is that the smallest needle? I manage to get out through my teeth, the words float there between us, a rhetorical question that I instantly regret. The nurse is unperturbed, her face placid,  or at least I imagine her to be. She is taking care. The needle slides pokes yet the vein slips, you can see it under the skin yet the blood flows and she's in (in the body! the body of my daughter!) and deftly tapes over it, connects the bag of antibodies to it, this entry into the body, through the skin and impossible vein, the fragile body of my daughter. It's a strange confluence of the barbaric and something nearly futuristic except that it's now. I'm only now imagining the nurse's own mind filled with something other  -- her own birds and whales, maybe, the lunch she'll have later, how these people are trials to get through. How I cannot get out from under the blanket of care of my nagging dislike of its constancy of how it looms, always. A tiny fight in the corner, over there, even as I kneel in gratitude over here at the care at the gifts this life has brought or that come with. 

Making Pies

My podcast partner, Jason Lehmbeck suggested that I put up an end of year post, a Who Lives Like This?! list of our favorite caregiver podcasts, and I said, Jason! I'm busy! Taking care of Sophie and making cakes! Jason reminded me of the fabulous song by Patti Griffin called Making Pies which is now running through my head -- as I make cakes for the masses and care for Sophie. I think you, dear Reader, should listen while you read:



The past six months have been incredible for the Who Lives Like This?! podcast -- we've talked to so many lovely and amazing mothers and fathers of children and young adults with disabilities. We've talked to those in support positions, and we have several terrific guests coming up in the new year -- siblings, mothers, fathers, bakers, pie makers, business tycoons -- well -- not business tycoons. We'd love to have a caregiver on the show who's also a business tycoon, though, so if you know someone, let us know. Pie-baking, as you might guess, doesn't pay all the bills!

So here goes on a list of caregiver podcasts that we love.

Ours truly
www.wholiveslikethispodcast.com

Lomah
www.lomah.org

Mama, Build Your Empire
https://mamabuildyourempire.podbean.com

Mama Bear
www.mapunknown.org

Learning Not To Swear
www.tedlyde.libsyn.com

The Accessible Stall Podcast
www.theaccessiblestall.com

Reader, please leave a comment here or elsewhere if you know of a podcast that might appeal to this mighty group of caregivers. Share the post, too, if you are so inclined.

Now, I've got to go make pies.

You could cry or die 
Or just make pies all day 
I'm making pies 
Making pies
Making pies 
Making pies

Here's the Thing

I'm loathe to use the word, but it's stress. The repeated whittling away, the curves belie the point so sharp I could peck through a vault. Why write it here? Why not? Perhaps it's Sophie doing better, knock knock knock, so the rest comes pecking, knocking, whittling away, soft skin yield.

All truths wait in all things,
They neither hasten their own delivery nor resist it,
They do not need the obstetric forceps of the surgeon,
The insignificant is as big to me as any,
(What is less or more than a touch?)
Logic and sermons never convince,
The damp of the night drives deeper into my soul.

Walt Whitman, Leaves of Grass

Saturday Morning Three-Line Movie Review

If Beale Street Could Talk

Every scene in this gorgeous movie is a work of art, subtle and beautifully lit, suffused with warmth and love, and there are eyes everywhere, eyes that look out at you and eyes that you look into and eyes that look at one another. The movie is heavy, so heavy that you can't get out from under while watching it, the under that is the history of black people in America, the under that is white supremacy, a smothering blanket, and the director, Barry Jenkins, spares nothing in his literal spareness. You can hold your breath while watching it, you can feel the love emanating from the lovers, from the families, from the shadows and darkness, but you just can't get out from under the grief, the loss, the suggestion that love is sometimes just not enough.

More Three-Line Movie Reviews

Green Book

Crazy Rich Asians
BlacKkKlansman
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

On Being a Detective As an English and French Major

The whimsy of the picture belies the terror I feel at navigating the dark recesses of Sophie's brain. I am not a scientist.

Sophie's gotten four four-day treatments of IVIG, in September, October, November and December. She responded terribly in the weeks following her September and November treatments and very well after her October and now December treatments. The infusion is a blood product, and we work with a pharmacy that gets it from a pharmaceutical company. In early October, the pharmacy told us that the product they'd sent in September was "out of stock" and that they would be substituting an equivalent product. They assured me of the "equivalence." The same thing happened again in early November when the new product that we'd gotten in October was "out of stock," so we went back to the one we'd used in September.

Remember two things:

1. Sophie did not respond at all after her first infusions in September. In fact, she got worse over a few weeks. We attributed that to the viciousness of ESES and to the fact that having millions of antibodies infused into one's body was a significant thing, that her body would adjust, that it had worked before after a few times, that sometimes things get better after they get worse.
2. I am not a scientist or a doctor. I have a tiny little mother mind™ that sometimes doesn't kick in right away.

While in the hospital the other week, we learned that Sophie's ESES is still there, which wasn't surprising because -- well -- she was in the hospital and she had a terrible month. But while in the hospital, the pharmacy called me to set up the medicine to be delivered for the December infusion and told me, again, that the product we'd used in November was "in stock," but there was only a low supply of the stuff we'd used in October. While in the hospital, I wracked my tiny little mother mind™ over what the hell is going on with Sophie's brain, and it occurred to me that perhaps the product we used in October was the one that really helped Sophie so that we should try it again to see in our own little tiny little mother mind™ experiment whether it would help Sophie. I asked the pharmacist whether there was enough of that October product for Sophie, and she said there was more of the stuff that we'd used in September and November, but I insisted and she said okay. So that was that.

It's now a good week out from the December infusion with the same product as the October infusion, and do you know that Sophie seems to have turned another corner? I don't want to jinx it, but we have to make sure that we get that same product again. Here's my English and French Literature brain at work, because I'm not a scientist: Sophie's brain is exquisitely sensitive, and something about the particular combination of antibodies in the product she got in October and December relieved the ESES. Something about the particular combination of antibodies in the product she received in September and November worked negatively and plunged her into near-crisis. 

This is sort of a boring post, isn't it? I thought about providing a link to a news article I read recently regarding drug shortages and pharmaceutical companies, but I don't feel like looking for it right now. I'm living it -- what the article is about -- right now, along with living this other weird life of relentless vigilance. There's an article about that somewhere, too, and it's about some "groundbreaking" work or study on PTSD and parents of chronically ill children or those with complex medical needs. These articles make me sigh, at this point. I point out that there's no post in the trauma, that it's chronic traumatic stress disorder. It's why I walk around during some periods with a whimper in the back of my throat. I lighten the stress and dispel the whimper by conjuring my Italian grandmother who walked around the house in her latter days, dressed in black, with rosary beads, muttering pray that I die, pray that I die.

Anyway.

So, the terror that belies the whimsy is this: This is the way it is. The detective work. The constant vigilance. The inability to go with the flow. The grace of discovery, even when your brain is better suited to metaphysical poetry and words than the intricacies of the human brain and chemical compounds or blood. The fact that we are on our own is both intensely freeing and utterly terrifying.

Friday Morning Three-Line Movie Review

Green Book

Something about Peter Farrelly's movie made me squirm, and I think you know why. It wasn't the truly great performances of both Mahershala Ali and Viggo Mortensen, both so easy on the eyes that -- well -- they could charm the skin off a snake, as they say, but when the snake is racism and a white man is interpreting it and there's all kinds of gloss and over-arching stereotype, I am not charmed. I am squirming in my seat, like I did while reading The Help and while watching it, too, and should I go on because I think you already get my drift and that drift is that we've got a whole lot more work to do and art to make if this piece of fluff makes anyone of any color not squirm in their seat.










More Three-Line Movie Reviews

Crazy Rich Asians
BlacKkKlansman
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

Since Last Week

Where do I start? I got home from the hospital with Sophie last week on Thursday night and left at 4:30 on Friday morning for my first trip to New York City in about eight years, I think. I got a killer deal on two flights -- took Oliver along because he's just a kick-ass kid with a full-time job, finishing high school early and on to University of Arizona in the fall! Here we are bleary-eyed in the plane just before take-off.

We arrived in Newark and were picked up at the airport by my cousin Paula's husband Jim. We spent Friday night with them and their dear daughter Faith, and the next morning they drove us up to my cousin Philip's house so we could finally join all the other cousins and aunts and uncles for the annual Pittule Day celebration. Pittule is a Calabrian specialty -- basically, fried dough that is either sprinkled with sugar or stuffed with anchovies. Both are pictured above.

Here's me taking a stint at the fryer with my cousin Mary:

Here's a few more pictures from the afternoon:

My mom, 80 years old, Aunt Dorothy, 90 years old and Aunt Mary, 87 years old

My cousins Frances and Mary

The whole Famiglia

Matriarchs and Patriarch

Me and my cousin Philip

That's a lot of beautiful family, and I'm grateful for every single one of them and for the opportunity to get together with them, talk and bond and eat delicious food. I'm so glad that Oliver got to experience it as well.

I should end this post here, but you must know that I also went into the city and stayed with two of my oldest friends, Jane and Phil, in their beautiful home on the Upper West Side. They lit candles for the first night of Hanukkah. I also got to see my very oldest friend -- not biologically but from my junior high years and onward -- Audrey.

Friends for 42 years!

On Sunday morning I took a Lyft uptown to visit Sandra, a woman and fellow caregiver whom I've been close friends with for at least six years -- yet have never met. I could have wept when I finally did get to hug her -- and her son and husband. For any of you social media naysayers, I reiterate that these online friendships have proved to be some of the most deep and profound of my life in every single way.

Speaking of profound connections, I also had the pleasure and nearly unspeakable joy of finally getting to meet Rosemarie. I held on to her for an extra beat as well, just so grateful to find this person as beautiful and graceful in real life as she's been to me online.

I think I'll save the rest of my New York City photos for another post. We flew home on Monday night and on Tuesday I started feeling chills and a general lousiness that ballooned into some kind of horrible flu-like thing -- no fever or congestion but damn, I feel like crap. I haven't been sick in so many years, I guess I was due for something or another, so I'm not complaining.

See ya'll later.

48 Plus Hours In: Hospital Chronicles, Meta

There's something sort of meta about that photo, isn't there? What does meta mean, anyway? Among, with, after. Something like that, I think. Sophie's brainwaves, Sophie and then, beyond, Sophie. Her face fascinates me.

I'm not sure what those eyes are telling me, but the word implore comes to mind, and those eyes both sustain and torment me.

We're sprung from the hospital and home again. Sophie's ESES is still pretty bad, but she has no underlying infections or thyroid problem or lung issues and the results of the autoimmune panel are still pending. Teenage Neurologist asked whether we'd consider high dosage steroids (it's one of the standard treatments for ESES), and I said no not ready. The other two times Sophie had ESES, the IVIG worked, and we still have room for it to work. I'm also going to fiddle again with the CBD and the CBDA and we're going to get this thing beat.

If you have a thing for science and immunology, put your thinking cap on and tell me something I don't already know. Here are a few things to ponder:

1. Sophie began seizing within a couple of weeks of her initial infantile vaccinations, given to her to boost immunity and prevent disease.
2. When Sophie was given ACTH, a high dose steroid, she got worse, not better. But she also had TWO MORE VACCINATIONS during the steroid wean (we knew nothing about anything in 1995 so didn't blink when doctor ordered four and five month vaccines. The only one they held was the pertussis because back in those days it was the live cell pertussis or what we called the DTP.)
3. Whenever Sophie gets a high fever, she has NO SEIZURES. This is a phenomenon that has been noted in some studies and occurs in some people with autism as well. Fever is the body's protective immune response.
4. The only treatments that have ever helped Sophie for any period of time are intravenous immunoglobulin which basically floods the brain with bazillions of antibodies that dilute out the "bad" ones that have "leaked" through the blood-brain barrier and are attacking her brain (this one is hard to wrap your head around as it's sort of meta-seizure, but just go with the flow) and cannabis medicine (potent anti-inflammatory).

If Teenage Neurologist can be one, so can you. Remember what meta means: 

Among, with, after

24 Hours In: The Hospital Chronicles (warning: adult language is involved)

When I was sitting in the ER yesterday, listening to the groans and moans of the traumatized behind the vinyl curtains, I was busy writing a story in my tiny little mother mind™about Issac The Nurse who wore beat-up tennis shoes, a scruffy beard and a yarmulke. We were in the ER at one of Los Angeles' most prestigious hospitals in order to gain admittance to get an overnight EEG. At 11:15 in the morning, 24 hours ago as I type here, we were placed in an ER bay to wait for the bed in the hospital so that we could gain some knowledge about Sophie's ESES shenanigans. We had originally planned to get an ambulatory EEG, but I was concerned about all the co-morbidities of the ESES (the increased seizures, the choking and inability to walk, etc.) and had had enough of it so insisted to The Nice Neurologist, who agreed, that maybe we should just go in to hospital to figure stuff out (pleaser remember this phrase for later, Reader) and get some tests, etc. I don't want to bore you with the details, but suffice it to say that Sophie and I sat in the ER bay for the next ten hours. When we finally got a room, we were told that it was too late to hook up the EEG and that it would be done first thing in the morning. Here's how I reacted:

My friend Sandra actually sent me this picture on about hour seven or eight in the ER, and let me tell you, Reader, that's what got us through. Even now, as I post it, it makes me laugh out loud. The only reason we needed to hook Sophie up (that's neurological parlance for attaching electrodes to the scalp in order to read the brain's shenanigans) was to see the OVERNIGHT ACTIVITY. Again, I don't want to go into details, but at some point The Hospitalist (further evidence of the corporatization of healthcare in this g-d country) who was earnestly trying to get a neurologist or a fellow or a resident to get the EEG thing going, told me that it was like talking to a wall. I called on the great forces of my tiny little mother mind™and asked him to send The Wall my way, but IT NEVER HAPPENED! I apologize for the Trumpian punctuation (whom, I might add, gave me my second massive laugh of the day when I read this quote:

)


Sophie's father came to the hospital at hour eleven, and I went home to sleep. When I arrived back at the hospital this morning, Sophie was still not hooked up and eventually Damage Control, in the form of The Hospitalist and Patient Care arrived in the room to talk me down.

Remember this?

Shortly after Damage Control, a tween with a nose ring and scuffed-up Converse shoes arrived to hook up Sophie, followed by a teenager who called himself The Resident Neurologist and who neurexplained to me what seizures were and how certain drugs worked. He also asked me whether our neurologists had ever thought of surgery for Sophie or the VNS. My tiny little mother mind™ was blown.







Wasn't I telling you a story?

Issac means laughter, Issac The Nurse said when I told him that I liked his name. We then had what I would consider a Biblical conversation (I actually have read the Bible several times and studied it both in a faithful sort of way in the last century and also as a very beautiful text that I do not believe as the word of God in the literal sense) about Issac and his mother Sarah who was believed barren when God finally graced her with a child, the news making her and her husband Abraham laugh uproariously at the thought of it since Sarah and Abraham were nearly one hundred years old. People lived longer then, Issac the Nurse said as he busied himself with Sophie, and I replied, No! Didn't they have shorter lives? Most women were dead in childbirth. Issac the Nurse informed me that this wasn't the case, that Issac From The Bible lived the longest of the three in his family and died at 180 years. I said I thought those numbers were probably highly significant and symbolic, but Issac the Nurse insisted that no, it was true. 

Post Thanksgiving Catch-Up

I had all my chicks home for a long weekend, and that is a good thing.

I had such a good time talking with Henry about all kinds of stuff. It's hard to believe how grown he is, how self-possessed and on his way.

I baked a lot of apple pies.

If you peer into the distance, you can see some biscuits. I baked a lot of biscuits.

I baked a lot of pumpkin cheesecakes, too. They tend to split on the top, even though I refrained from over-mixing the batter (causes air bubbles that rise to surface and split the cake open while baking) and turned the oven off and left them in the oven for two hours after baking. Outside of using a water bath, do any of ya'll have any tips to avoid the splitting? Toasted meringue helped disguise the cracks and went beautifully with the pumpkin, if I do say so myself.

On Thanksgiving day, Carl, Henry, Oliver and I went down to Skid Row to help a wonderful organization feed the needy and the homeless for a few hours. It's shocking to see and disgraceful to accept the level of impoverishment in this beautiful city that I call home. I don't know what the answer is, but I do know that I can help more in whatever capacity.

And then there's Sophie. She is struggling. I don't know the answer and grow tired of living the questions. I had a mini-breakdown on Saturday night. Ok. It was a breakdown. I haven't cried that hard in a long time, the kind of cry where you might as well vomit up your heart, if not your guts. I thought a lot about what it means to be faithful. Faith full. Not to any god but to love and life. There's grace to that, an inversion. Prayer as incarnation, a calling forth, for something dark to be revealed.

Hyperbole and Cliche on the Eve Eve Eve of Thanksgiving

Yes, that's white flour you see in the basket, and it's bleached white flour and it's self-rising white flour. I'm fixing (like my Tennessee friends say) to make about ten dozen southern biscuits. Angel Biscuits. Our beloved Mary Moon provided me with a recipe. I'm also baking about ten thousand apple pies and about five thousand pumpkin cheesecakes. Hyperbole is the rule today. The apple pie is a pretty standard recipe that I've made a bazillion times, and the pumpkin cheesecake, the same. I've found that slicing the apples very thin -- like about 1/4 inch -- is the trick to ensure that the pie doesn't become a mushy mess, although mushy messes have their charms. You let the slices macerate in some lemon juice, brown sugar, white sugar, cinnamon and salt first, and then you drain them and boil down the juices into a thick syrup that you then add cornstarch to and toss with the apples before adding them to the pie. You know the rest. The pumpkin cheesecake is a tad time-consuming and after being cooked must chill overnight in its springform pan before being un-molded, and the only trick I have for it is to use really good cream cheese because the cheap kind of cream cheese sometimes has a lot of water in it (kind of like cheap butter) so it's better to use the good stuff, if and when you can. Despite making ten thousand things, I remain a bit of a snob when it comes to baking and pastry. If you're a new reader, in another life I worked in fancy-schmancy kitchens in New York City under asshole chefs and learned all the finer things in pastry, before being thrust into the cruel world of childhood epilepsy when my infant daughter was diagnosed with it and so began The Seizure World which might be sort of like The Matrix (I have a limited understanding of the movie as I am decidedly not a fan of sci-fi) in that it's kind of a simulacrum of the world as most know it where tiny little mother minds™ are trapped and enslaved. Wait. That's the real world, too, isn't it?

Anyway.

Hyperbole aside, I have a hell of a lot of biscuits, apple pies and pumpkin cheesecakes to make over the next few days for my cottage business, Everyone Needs Cake.™ Because of that I have decided not to make Thanksgiving dinner this year, and both my sons (Henry comes home tomorrow night!), The Bird Photographer and I will be feeding the homeless on Skid Row Thanksgiving morning. Then we'll return home and eat pizza and pie.  It's just as well (it's also cliche day, apparently). We have much to be thankful for, and it isn't the origins of the country, to tell you the truth. Or the Pilgrims that set the tone for the rest of history, either.

It's just impossible

Seizure days. ESES days. How do we get through them? Still, I have no idea. Still. Still! What would it look like to get through them? Is there some sort of chant for it, a manifestation? How does Buddhism work when your daughter has a bad seizure day?  It's just impossible, my friend Jody once said about her own situation, and I think about that often. It's just impossible. I think about Paloma and Calvin and Michael and Robert and Zaki and Charlotte and FlyBoy and Sophia and William and Emily and -- well -- all of them. It's impossible.

Listen. We had Dr. Bonni Goldstein on the Who Lives Like This?! podcast this week! She educates everyone about the endocannabinoid system and how cannabis medicine can right the balance for so many disorders. She talks about caregiving for caregivers, but her advice is really for anyone who wants to learn about how imbalances in the endocannabinoid system can manifest as disease or insomnia or anxiety or depression, etc. She has advice and suggestions. Check it out here. You can listen right from the blog post or from iTunes directly.

for your eyes only

I need to get back to writing a little bit here every day. It was a good exercise and occasionally I'd type out some really good stuff. Thoughts and musings or what passes for thoughts in my beleaguered mind these days. And nights. I went to see Dr. Jin today. I have mornings when I'm taking care of Sophie and feel tears in the back of my throat that I swallow. A sea. So I went to Dr. Jin and she tried, again, to stick a needle in that fleshy space between the thumb and forefinger, but I knew and then she knew that I knew what was going to happen and that is pain, and it's a weird pain that I just don't can't take. So she didn't stick the needle there. After she finished with the needles she turned on the Chinese music and shut the door behind her, and I swear it's the same music that they played in the Chinese restaurant where I worked for a brief time in Carrboro, North Carolina. I was the host and seated the few customers we got in dark booths and I've written this before, but there was a Chinese waiter named Jackson who was in love with my young college self and he was always somehow behind me whispering in low tones under that Chinese music. One day he came in with a perm and I noted the perm and he said for your eyes only which I believe was a Bond film of the era. I still remember Jackson and the bags of food that the cook in the back dumped in woks and stirred around and I wonder what happened to all of it. I think about Jackson every time I lie on Dr. Jin's table with needles between my eyes my breasts and down somewhere on my feet and that Chinese restaurant music plays. I'm the hostess, still, and he's at my back, whispering in my ear and there's something so relaxing about letting it all go or come, these memories of darkness and men and food and the way light falls in a late-afternoon booth. It's not nostalgia but a meditation and after a while the Chinese music tape clicks off, Dr. Jin comes in and takes out all the needles and tells me to take these pills for my sadness and she does this for me, she says, and I love her.

Riding with Min After Baez Sang Dylan

Joan Baez, Royce Hall, UCLA
November 2018

I know that's a bad photo of Joan, but I had to take it quickly, when she first came out or risk the wrath of my fellow concert goers. I like that her head is blurred out in light because that's what listening to her sing did to my soul. Blurred it out into light. I went into the concert so heavy-hearted, the fires, the air, the animals, the earth, the dead and charred land, the piles of dead children, again. It's not too much, it's just so, so awful. Joan sang and sang, though, in what was supposed to be her last Los Angeles appearance. She sang her own stuff and Bob Dylan and Tom Waits and John Prine and Woody Guthrie and Stephen Foster and Pete Seeger, and when she sang Zoe Mulford's The President Sang Amazing Grace, I cried. Because, really, it seems like another life these days, doesn't it? I'd never heard Baez in real life, had sort of fallen in love with my first real love to her music and was amazed that while her voice had deepened, it was still strong if not capable of hitting the super high notes of old. To tell you the truth, I don't know if I ever really appreciated those super high notes, anyway. When she sang Diamonds and Rust, I was twenty years old again and all moony over anyone who had a love affair with Bob Dylan and wove that love and anguish and romance into such words. Oh, boy.

I took a Lyft home, and when I got into the car, my driver, Min, acted super flustered as he'd had a time getting through the after-concert crowds in the street. I reassured him that it was no big deal and then he asked me how to get out of the campus and then he asked me what kind of concert I'd been to. It was Joan Baez, I said. And he asked, Who's she? And I said, She's been around for a long time, was famous in the sixties and seventies as a protest singer. Min asked me to find a song of hers to play for him in the car, and while I tried to pull one up, he asked, So what kind of things did she protest? And I said, She protested against the war and for immigrants and everything when she was young and now she's pretty much doing the same thing because of Trump. Min said, Why does she protest Trump? I know it's not good to talk about politics, but I love Trump! I think he's doing a good job! And I stopped looking for a YouTube video for Min to hear and said I can't stand Trump. Min asked why? and I said because he's a piece of shit. Bless Min's heart. We talked a bit more. Min is Korean and lives in Koreatown. I learned that he loves Trump because he's sticking it to the Chinese. Min conceded that the POSPOTUS does say controversial things but insisted his attitude toward China made him a great president. I said anyone who is so deeply racist and misogynistic, as well as ill-tempered could never get my respect. Min asked What sort of racist things has he said? I told him a few things and then said Honestly, Min, do you think he cares that you're Korean? He probably despises you for being Korean. Min clung to the anti-Chinese stuff and I sat pissed in the back seat because that light emanating from Joan Baez was leaking out of the car. I thought about jumping out at a light and then thought better of it. Min had on a large checked button-down shirt, just the kind I dislike, and I didn't know what to make of him, to tell you the truth. When I got home, I told Oliver and Carl about him. Carl rolled his eyes and Oliver said, Min sounds like a dumbass.








Oh, what'll you do now, my blue-eyed son?
Oh, what'll you do now, my darling young one?
I'm a-goin' back out 'fore the rain starts a-fallin'
I'll walk to the depths of the deepest black forest
Where the people are many and their hands are all empty
Where the pellets of poison are flooding their waters
Where the home in the valley meets the damp dirty prison
Where the executioner's face is always well-hidden
Where hunger is ugly, where souls are forgotten
Where black is the color, where none is the number
And I'll tell it and think it and speak it and breathe it
And reflect it from the mountain so all souls can see it
Then I'll stand on the ocean until I start sinkin'
But I'll know my song well before I start singin'
And it's a hard, it's a hard, it's a hard, it's a hard
It's a hard rain's a-gonna fall

Awake People Be Awake

Woolsey Fire Lit, early afternoon
11/10/18

A Ritual to Read To Each Other

If you don't know the kind of person I am

and I don't know the kind of person you are

a pattern that others made may prevail in the world

and following the wrong god home we may miss our star.

For there is many a small betrayal in the mind,

a shrug that lets the fragile sequence break

sending with shouts the horrible errors of childhood

storming out to play through the broken dike.

And as elephants parade holding each elephant's tail,

but if one wanders the circus won't find the park,

I call it cruel and maybe the root of all cruelty

to know what occurs but not recognize the fact.

And so I appeal to a voice, to something shadowy,

a remote important region in all who talk:

though we could fool each other, we should consider—

lest the parade of our mutual life get lost in the dark.

For it is important that awake people be awake,

or a breaking line may discourage them back to sleep;

the signals we give — yes or no, or maybe —

should be clear: the darkness around us is deep.

William Stafford

Woolsey Fire Lit, early afternoon
11/10/18
photographer: Carl Jackson