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

Gun Rage

inside jacket of Rebecca Traister's book Good and Mad: The Revolutionary Power of Women's Anger

I'm enraged this morning, waking to the news that a 28 year old ex-Marine with "possible PTSD" opened fire on a group of college kids in a popular bar and grill in Thousand Oaks, a suburb of Los Angeles. He killed twelve people, including a sheriff and then himself. Many people are injured, and there's a been a call for blood donations. I don't know what to do with my anger this morning and will use this space to express it.

My rage is not directed toward the obvious target but rather toward those who persist in believing in their right to bear arms, in their right to use violence to protect themselves from the boogeyman lurking in their neighborhoods, in their right to be "good people" with guns, in their right to collect guns and place them in special locked boxes or cases, in their right to use them for "sport," in their clamor for their own "liberty." I believe that justifying owning and using guns like the Glock this man used in this point in time, November of 2018, is outrageous, that those who do are complicit in perpetuating the myth of safety in arms and the myth that owning a gun confers liberty. I believe that these people are complicit in the deaths of tens of thousands of people a year in our country. I am enraged enough to believe that these people -- men AND women --  are equally as complicit as the gun men (because, let's face it, it's MEN who do this shit) because they contribute to the myth of violence being the answer to conflict. I believe that every single person who owns guns -- for sport, for pleasure, for safety -- because they can, should acknowledge their complicity and step up and do something about it.

Me, I'm going to donate some of my blood -- boiling at this point.
















#fuckguns

Vote, Baby

#healthcarevoter
#throwthemout
#resist
#nafacamo

Life FEELS Good

I get at least twenty requests a day asking me to promote a book or a product or a service on my blog. I delete nearly all of them. I was just about to press delete on reviewing the movie LIFE FEELS GOOD when the words cerebral palsy jumped out. Then I saw that it's a Polish movie, and I love Polish movies, so I clicked the trailer, and -- well -- I'm happy to review and promote it.

LIFE FEELS GOOD is a film by Maciej Pieprzyca and is described as "heartbreaking and humorous," two adjectives that I highly relate to and find resonant. Dawid Ogrodnik plays Mateusz, a man with cerebral palsy who wants to be understood by his family and friends. It's based on a true story and has been nominated for eight Polish film awards, winning for Best Leading Actor, Best Screenplay and an Audience Award. It's distributed by Under the Milky Way and will be available on iTunes, Amazon, Google Play, XBox Microsoft and other VOD platforms.

I will be viewing it soon and will post a review, but don't you think it looks amazing? It's going to be released tomorrow, November 6th. Check it out.