Tuesday, January 15, 2019

Head Swimming with Wants

We're getting rain here in Los Angeles -- buckets and buckets of rain -- and the most beautiful winter sunsets. That picture above was taken on Saturday in Santa Monica. Carl and I were on the beach, and that's facing east, away from the ocean.

Turn around.

Today marked the first day of the second week of my new job teaching English to a group of eleventh and twelfth grade girls. I have three classes, two groups of eleventh graders and one group of twelfth. Each class is unique and one is particularly challenging. Anger and resistance make the air crackle in that room. Heads swim with wants. Take notes, I think. Keep taking notes. I have a mind and a memory like a steel trap, and these girls will join all the other hostages that wander the labyrinthine paths.

I get this newsletter every day from The New York Times newspaper cooking section. It's called What to Cook Right Now. I love it so much -- the recipes, the commentary, the links. Today I learned that it's the writer John Dos Passos' birthday (1896). I read nearly everything he wrote back in the last century, in my early twenties. I probably read him lying on a bed somewhere, maybe in the apartment where I lived with my first love, out in the country in Chapel Hill, a mattress on the floor at the top of the stairs, sandwiched between two walls and a window at the foot, a bookcase stuffed with used paperbacks. I might have been chewing on some Twizzlers when I read Dos Passos, red plastic mingling with brown must. Dos Passos was a hostage, though, wandering around my mind, lost down some dark corridor, until I read about him today.

Teaching these girls, doing the research for lesson plans, revisiting stories and poetry -- it's all packed in there, in my mind, and it seems that there's no end to what one can stuff into it. So, yeah. Take notes, I think. Keep taking notes.

Here's a passage from The 42nd Parallel that Sam Sifton, the guy from the NY Times newsletter thinks describes the writer's life. I agree.

The young man walks by himself, fast but not fast enough, far but not far enough (faces slide out of sight, talk trails into tattered scraps, footsteps tap fainter in alleys); he must catch the last subway, the streetcar, the bus, run up the gangplanks of all the steamboats, register at all the hotels, work in the cities, answer the want ads, learn the trades, take up the jobs, live in all the boarding houses, sleep in all the beds. One bed is not enough, one job is not enough, one life is not enough. At night, head swimming with wants, he walks by himself alone.

Thursday, January 10, 2019


Blackboard by Winslow Homer, 1877

I've completed my first week of teaching three English classes of eleventh and twelfth grade young women. Here are some observations and notes:

  • a bit of Emily Dickinson -- hope and the thing with feathers -- inspired a group of let's say recalcitrant girls to write their own three stanza poems using extended metaphor and dang if they didn't do a beautiful job

  • have argued over whether or not to read Mary Shelley's Frankenstein (only the 12th grade girls are reading it, now). It's old. It's hard. Cry me a river.

  •  read aloud Christina Rossetti's The Goblin's Market and are now doing a fine analysis of it (thank you, LP, for turning me on to this strange and wonderful poem). I felt a tad uncomfortable reading the provocative parts of the poem, given the sensual imagery of juices running out of mouths, etc., but this poem! the language!

  • have begun reading Hawthorne's Rappaccini's Daughter. Remember that? I loved Hawthorne stories as a young reader and hope to pass along the weirdness (not of me but of him) to these students. 

  • have worn black tights three times this week which is more times than in the previous twenty years. This is not hyperbole

  • who knew I had so little modest clothing? I've had to purchase some things that make me feel strangely invisible which provokes thought -- interesting thoughts --we think the ways in which we adorn ourselves speak to identity but maybe they don't because I am still me however much I look like an Italian widow 

  • (the question of being told what to wear and what constitutes modesty and the concomitant questions of male authority and hierarchy and what it means to be reverent, etc.) 

I am both exhausted and exhilarated, my voice hoarse at the end of the teaching period, warranting a Rules and Expectations hand-out that includes some communication pointers and a stern demand for respect for me and for one another which translates into Refrain from interrupting and talking over one another and me. 




Monday, January 7, 2019

Back to School

I've got so many books that I've started wearing them on my back. Marie Kondo, mondo and all that jazz. Are ya'll watching that show on Netflix? I plan on checking it out as I've resisted that whole cultural phenomenon that appears to cater primarily to the privileged with me, privileged but rather content in the organized clutter that I call home.  Right now I'm trying to get into Circe, a book that was recommended by a slew of people whose opinions I admire and trust, but it's sort of mythological and sort of fantasy and -- well -- I just can't get into it. I'm at the age where I don't continue reading books that haven't grabbed me by, say, page 50. Bye, bye Circe. Hello Elaine Pagel's Why Religion. I've read Pagel's writing, and it's difficult and fascinating and right up my alley. I guess some of you would argue that religion is fantasy and myth, so then given my aversion to both genres, why would I read it? I don't know what to tell you, other than at one point I looked into getting a Master's degree in Religious Studies/Comparative Religion.

In any case, I STARTED MY NEW JOB TODAY. Yes, Sirree Bob, as they say. I've got this new job teaching English to 11th and 12th grade girls in a very, very strict religious school. It's not a Catholic school by the way, so I'm not dressed as a Flying Nun, but I'm dressed in a way that is not customary for me, and while it's not uncomfortable, I do feel a bit like an embedded journalist in a country far, far away. Taking notes, with deep respect and curiosity and a tiny bit of ambivalence about the culture in which I am thrust, black clad and modest.

I love Los Angeles as it's a place where all these different cultures collide -- under the sun, of course, with a new governor and a whole lot of lefties and a smattering of conservatives (just enough to add some "diversity" but not enough to encroach upon our liberal ways). And what the hey is going on with the POSPOTUS and the government shutdown? I'm sorry if you're a furloughed worker and hope that this is all resolved, and we can quit thinking about walls and spikes and concrete and hordes of terrorists rabidly climbing over and into our lives.

The girls were wonderful today -- bright and sweet and outspoken and even a little outrageous. I had some exchanges, stared into some very warm brown eyes and knew immediately whom I was going to love because love is a serious word (she told me) even as I'll be driven crazy.

It's all good.

Tell me what you're reading. Tell me what you'd like to read if you were an 11th or 12th grade girl and have some strict reading guidelines (no sex, no violence, no molestation, etc.). I'm making up a list of book suggestions and need your help.

Wednesday, January 2, 2019

Working Stiff

Street graffiti, Los Angeles, 2019

I finally got a job that I'm excited about, and it begins next week. I've been applying for various positions from a site called Indeed for the last year, and I was beginning to believe that it might be a front for some kind of data gathering Russian bot/Facebook thingamajig because literally nothing came out of it. I'm perfectly aware that I have my limitations at the age of 55, and I didn't bother applying to the kind of grunt work that offered a salary that would quickly be swallowed up by Saint Mirtha, but damn, it was demoralizing and all death of a salesman around here until Christmas week when I was hired to teach English literature and writing part time in a small private school for girls. The school is very small and very religious, with strict dress codes for both the students and the teachers. That's all I'll say about that. I am very excited and a tiny bit nervous but extremely grateful to have found something that perfectly fits the erratic schedule and overwhelming duties of my other job as CEO of Sophie, Inc. I will be jumping right in on Monday with the girls already reading Frankenstein. 

I have love in me the likes of which you can scarcely imagine and rage the likes of which you would not believe. If I cannot satisfy the one, I will indulge the other. 

from Mary Shelley's Frankenstein

The universe is abundant.

Tuesday, January 1, 2019

New Year

Sunrise, Salton Sea, 2017

To the New Year
With what stillness at last
you appear in the valley
your first sunlight reaching down
to touch the tips of a few
high leaves that do not stir
as though they had not noticed
and did not know you at all
then the voice of a dove calls
from far away in itself
to the hush of the morning

so this is the sound of you
here and now whether or not
anyone hears it this is
where we have come with our age
our knowledge such as it is
and our hopes such as they are
invisible before us
untouched and still possible

W.S. Merwin

Friday, December 28, 2018

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. 

Sunday, December 23, 2018

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


Mama, Build Your Empire

Mama Bear

Learning Not To Swear

The Accessible Stall Podcast

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

Tuesday, December 18, 2018

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, December 15, 2018

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
Far From the Tree
Sorry to Bother You
Won't You Be My Neighbor?
Learning to Drive
Love and Mercy
Not a Three Line Movie Review
While We're Young

Force Majeur 
Gone Girl
Saint Vincent

Get on Up
Begin Again
The Immigrant

Cesar Chavez

The Grand Budapest Hotel

Labor Day 

Tuesday, December 11, 2018

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.


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, December 7, 2018

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
Far From the Tree
Sorry to Bother You
Won't You Be My Neighbor?
Learning to Drive
Love and Mercy
Not a Three Line Movie Review
While We're Young

Force Majeur 
Gone Girl
Saint Vincent

Get on Up
Begin Again
The Immigrant

Cesar Chavez

The Grand Budapest Hotel

Labor Day 

Thursday, December 6, 2018

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.

Thursday, November 29, 2018

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

Wednesday, November 28, 2018

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. 


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