Thursday, October 27, 2016

Taking Down the Patriarchy

Ocean Park Beach
photographer: Carl Jackson

I've been reading Nobel Prize winning writer Svetlana Alexievich's Voices from Chernobyl: The Oral History of a Nuclear Disaster. Yeah, light reading. Just kidding. I'm reading it in Russian, too. Just kidding. Actually, I'm not into the light reading thing. Light reading makes me feel anxious and depressed, seems to exacerbate my feelings of there never being enough time to read all the books. I feel the same about movies. Reading "light" or watching crap makes me want to throw myself in front of a train. Getting through my days, sometimes, is only possible because of the art of others. Right now, speaking of trains, I'm listening to Anna Karenina in the car as I drive around the shitty. Dang, ya'll. That novel is relevant, and it's not about throwing oneself in front of trains. It's about love and bullshit, about peasants and patriarchy. There's even a passage about doctors and their uselessness that yours truly could have written!

Reading the extraordinary accounts of survivors in Alexievich's book doesn't just give me perspective but highlights just how resilient and dogged and strong, human beings can be, not to mention black-humored (the best humor, at least to me). The oral histories aren't for the faint of heart, though, as you can imagine. They're as much about vulnerability as they are about strength, and that's why, I think, they appeal to me. I have been feeling particularly vulnerable and fragile of late, for obvious reason. Not a day goes by that I don't have some sort of fantasy of fleeing in either body or mind or both, and whether it's because of the poisonous political atmosphere (don't pose false equivalencies to me: #Imwithher), or the thought of living in the same country with those who support or make excuses for you-know-who or struggling with caregiving and Sophie's epilepsy, acknowledging that vulnerability and fragility restores me. Really great literature -- whether it's fiction or non-fiction or poetry -- restores me. Not long ago, a relative accused me of having my head up my ass as far as my politics go. I think she was also pretty disdainful of the poetry that I put up here. I really don't think it's one or the other. For me, the personal is political and the political is personal and the only mitigation is art.

I got distracted. I was going to make this post about my optimistic feeling that despite all the acrimony in the country, I honestly think the patriarchy is coming down. It might be messy, and it might get even messier, but it's coming down.

Here's some "poetry" from Alexievich's book:

Bulgakov writes in A Cabal of Hypocrites: "I've sinned my whole life. I was an actor." This is a consciousness of the sinfulness of art, of the amoral nature of looking into another person's life. But maybe, like a small bit of disease, this could serve as inoculation against someone else's mistakes. Chernobyl is a theme worthy of Dostoyevsky, an attempt to justify mankind. Or maybe the moral is simpler than that: You should come into this world on your tiptoes, and stop at the entrance? Into this miraculous world...
Aleksandr Revalskiy, historian 

Tuesday, October 25, 2016


At the osteopath's office

The biggest spider that I have perhaps ever seen spun an enormous web that spanned about a quarter of the width of my backyard, and every morning I stood on the stoop outside my bedroom and looked at it, glinting in the sun. She sat in the middle of the web, waiting, I guess, for any errant creature to be ensnared. When I walked up to her, she sat there still, still waiting, and when I lay my finger on one of the anchor threads, she skittered up the vast and intricate highway and onto a cable that stretches the length of the backyard. This morning I stood on the stoop to see her, but she was gone and the web only a tattered thing, threads hanging.

This morning I struggled with Sophie or, rather, struggled with my despair as Sophie struggled with her seizures. It's been twenty-one years since it all started and nearly three weeks since Sophie's last hospitalization, and while her seizures are fewer and consigned to the early hours of the morning from, let's say, 4:00 am until 7:00 am when they come, one after the other, in her sleep, her days are spent very drowsy -- let's say totally drugged -- and she's unable to go to school. She is weak. She is on one drug -- a pretty massive dose, compared to where she was -- and CBD. I don't have any answers to the questions, so stop asking why? what do you think? what do They say? I don't know. I think nothing. They have no fucking idea.

I'm a giant spider, sitting in the middle of an intricate web that I've built over two decades. I'm waiting for an answer.

Here's what They did:

Sophie isn't having a lot of seizures, except for those few in the early hours of the morning (that reduce me to a raving lunatic, especially when I find her soaked in her bed and must strip it and her, even as she seizes) because she is drugged with Onfi, a powerful and dreadful benzodiazepine. She was, basically, ripped off of Vimpat, an anticonvulsant that she'd been on for over eight years (a small amount in the end, but a small amount of an AED is still an amount that the brain is accustomed to accommodating), but only after being infused with a giant dose of Vimpat (despite my misgivings about it causing hives) that was followed by giant hives covering her entire torso. Later, in consultation with a dermatologist, the three neurologists attending decided that the Vimpat and the hives were coincidental but, curiously, on the discharge papers the drug was listed under ALLERGIES.  She was hooked up to an EEG for over six days, had copious blood work, lung x-rays and urinalysis, was declared normal on entry and three days after had a urinary tract infection that called for an antibiotic (the only time she has been on an antibiotic in the last fifteen years was last spring when she had her wisdom teeth out). One neurologist suggested the drug FYCOMPA as an option to replace the Vimpat, but I pointed out that it was known to cause homicidal ideation, and The Neurologist agreed that he'd seen pretty serious behavioral issues with it. I'm not going to make any jokes here, so just go back and read those italicized words, Reader, and come to your own conclusions. I'd love it, too, if you read this post from over a year ago.

Remember that I don't have any answers. I'm a spider who's been spinning a web for years and I'm now waiting. The other option via the Great Minds of Neurology was, of course, to ramp up the Onfi and work with CBD (remember that CBD and Onfi together show promise in seizure control), so just like some game contestant, I picked that door and took Sophie home, drugged out of her mind on a nasty benzo and an antibiotic. We had absolutely no resolution to the problems that brought us to the hospital in the first place, although I guess there's some comfort in knowing that Sophie is now officially off Vimpat. They (the Powers That Be/Neurologists) have no idea about the CBD and how and if it'll work. If you remember, THE PARTY LINE is not to pay any attention to CBD other than to give a few winks as a sign of tolerance, at least until the big pharmaceutical trials do their slow slog of research. This is because the federal government still has marijuana listed as a Schedule 1 substance, along with heroin and cocaine, and has determined that it has no medicinal value and therefore no public entity can study it. Sophie had nearly two and a half years with dramatic success on CBD, and at no time during that period did any neurologist express any interest -- real scientific interest -- in that success. So we're sent home, basically, on our own, to figure things out. 

Fortunately, I have Dr. Bonni Goldstein to help me figure things out. We're trying a new strain of CBD, along with THC, this week, and I'm hoping that I can reduce the Onfi at least enough that Sophie can live. Yes, I said live, because what she's doing now is not fully living. She is drugged. I took her to the osteopath this morning, and she lay on the table under Dr. Johnson's gentle hands and actually opened her eyes and smiled at the doctor. It was the first time she'd smiled in weeks, and I know she felt some kind of release. I was sitting on the edge of the table, my hand over her legs, and I couldn't stop crying, so Dr. Johnson stood up and brought me a tissue, told me that it was all right to cry. All will be well, she told Sophie, all will be well.

This is as long of a post as that spider and her web were big. I was going to spin into commentary on Drumpf and the article I read here about his nephew who had infantile spasms, the same diagnosis as Sophie's back on that dark day in June of 1995. I was going to rail about health insurance, how premiums are going up not entirely because of the Affordable Care Act (as the conservatives say) but because our for-profit health insurance industry is utterly dysfunctional. This is my web, my rant and yes, it all goes together. Watching Sophie seize, Drumpf's nephew's infantile spasms, the removal of his healthcare coverage, the expendability of the disabled in our culture, my own fatigue and burn-out despite a wealth of support, pharmaceuticals, party lines, obtuse neurologists stuck in boxes, friends and family who just don't get it, Sophie's seizures, and I'm skittering away, my web tattered.

Here's what we need:

  1. The federal government needs to deschedule marijuana
  2. Pump money into researching its use as medicine
  3. Keep Big Pharma out of it by fostering equal partnerships between patients, farmers, interested parties and researchers
  4. Expand the Affordable Care Act into universal health coverage
  5. Vote for Hillary Clinton for President and hold her accountable
  6. Kick Donald Trump and every single racist, misogynistic, homophobic, xenophobic person who votes for and supports him out of the country and into exile on Guantanamo or one of those for-profit prisons filled with generations of black men who were thrown into them for possession of marijuana during the fake Drug Wars.

Friday, October 21, 2016

Breathe Out Love

To C

I keep thinking of that dream. A rainy road dark wet and your long back. A snake more serpent than reptile, how it appeared in a room with a confident stealth. Drab carpet underneath. Green. The curve of Sophie's back just out of reach, for then. For now, and how, I leapt toward her and out of the dream and into my body. Soft, curved, a covering for a beating heart. Shhhhhh, you said, it's only a bad dream. Only. If only. There's loss and there's longing and I have held both, letting go.

What if you slept...

What if you slept
And what if
In your sleep
You dreamed
And what if
In your dream
You went to heaven
And there plucked a strange and
beautiful flower
And what if
When you awoke
You had that flower in your hand
Ah, what then?

Samuel Taylor Coleridge

Wednesday, October 19, 2016

Restoration In Progress

I honestly have no idea how to catch up here and relay to you the glorious things I saw and did while up at Mammoth over the weekend through Tuesday.  I guess I'll just have to post some of my favorite photos -- these are a few of the ones I took on my iPhone, and none have any sort of editing or filter on them. I also used a Canon, but I have hundreds and hundreds of shots that I need to go through, so I'll leave you with these.

For all of you who say that "you'd miss the seasons" if you lived in California -- well -- we have the seasons.

Here's fall:

The shot below was taken just off the highway where we pulled over when we saw an enormous herd of sheep. Within moments, a real shepherd (I'm SERIOUS!) came whistling down a path with a real border collie who literally shepherded the sheep away from the fence and the highway and back into the field.

My favorite place was the aptly named "Convict Lake." I think the story goes that a group of convicts escaped from a Carson City prison and ran here. The lake is at well over 7,000 feet elevation and achingly beautiful. I hung out for a while while my photographer friends wandered about taking their spectacular pictures. I took off my socks and hiking boots at one point and waded into the icy water. I lay under the tallest trees and looked up to the end where the branches hit the sky. I have always loved to feel very, very small.

It rained hard and the winds howled one night and all the next day. That was exhilarating -- to feel the rain on my face, to feel chilled and wet and no longer parched.

I saw six rainbows, too.

I have a thing for trees that stand alone in vast empty spaces or along ridges. They speak of accommodation and a fierce loneliness.

It snowed, too, and while I'm not a fan of the white stuff, there was something exhilarating about moving from yellow to white in the space of an hour. The eastern Sierras are really just spectacular.

I could just post pictures all day, but really what I want to say is that I am so grateful to have the opportunity to travel in the great state of California, to be outside wandering around so many spectacular vistas and to be restored by friendship, love and the earth.

photographer: Carl Jackson

Monday, October 17, 2016

The moon drops one or two feathers into the field.   
The dark wheat listens. 
Be still. 
There they are, the moon's young, trying 
Their wings. 
Between trees, a slender woman lifts up the lovely shadow 
Of her face, and now she steps into the air, now she is gone 
Wholly, into the air. 
I stand alone by an elder tree, I do not dare breathe 
Or move. 
I listen. 
The wheat leans back toward its own darkness, 
And I lean toward mine.

James Wright

I'm up at Mammoth Mountain, checking out the fall colors and recovering from the past few weeks. I don't know -- I'm feeling drained in a way I haven't in the past which I guess is to be expected. Up here in the mountains, the air is clear and biting cold. It rained in sheets yesterday, all day, yet I lifted my face to the water in gratitude. Rainbows arched over cloudy skies, and the cottonwoods' leaves are yellow coins, hanging on.

Friday, October 14, 2016


You didn't think I'd just let things go, did you? Just as they always have, and do, they percolate, lay down in layers on top of one another, waiting to be urged into shape. Did you know that Rome is a city of layers, that about fifteen feet down are the remains of Late Antique Rome (between 1500 and 800 years old) and then another fifteen feet below that is another? And so on. That dermatologist with the Drumpf hair wanted a CAT scan of the skull, threw out diseases and words, mused, casual, and then he dismissed the giant hives as coincidence and prescribed the antihistamine with the green label with a shrug.  I nodded my head and asked intelligent questions, like I do, but he disappeared in a puff of dander in my mind. You didn't think I'd let it go, did you? I lay down on the bed for hours as the words lay down in layers, waiting to be urged into shape. I feel the urge. Otherwise I'd go mad, not be mad but go mad. Go.

I read a free article in Esquire today about an epileptic man, Henry, who was rendered an amnesiac in the 1950s, after an esteemed neurosurgeon basically fucked up the surgery. Stripped his memory with knife. I read this on my phone while sitting in the car at a Valvoline and a woman with dreads poked around in the car's netherparts. I'd call that a coincidence -- both the fact that of all the things on the internets that I'd click on to read was a story about an epileptic (named Henry) and that my car's netherparts were being explored -- but I'm not like the dermatologist or even the neurologist who prefers the empirical. I'm more inclined to believe that there are no accidents. Plus -- you know -- those layers. The author of the article was the grandson of the neurosurgeon. Henry's brain, though fucked up by the establishment, proved to be incredibly useful over the years, providing us with a wealth of information about the brain. Henry himself, the profound amnesiac, retained the memory of the surgeon who'd taken his memory, though, and whenever he'd get stubborn, let's say, about taking his medication, all They'd (it's always They) have to invoke was the doctor's name, his authority, and Henry would comply. Even after the surgeon was dead and Henry sat for hours doing crossword puzzles in a chair at the home where he'd lived ever since, the once upon a time.

I am as far from stripped of memory as Henry was stripped. Those layers.

Remember the layers. The latest ones laid over six days in the hospital. Lying for six hours the day after we returned home, waiting for words.

I am a reluctant ringleader in the circus, whipping my lariat around, one hand on my crop. There are the clowns in the car, spilling out, so many of them. A distraction. That beautiful woman on the rope above -- her balance and daring! -- is me as well, an alter-ego to be sure, her daring my dissociation. Even tigers are tamed in the ring, but they return to cages, crunch on bloody flesh. So it's all illusory -- the entertainment. Why always my urge to flee? Sophie, under my arm to some distant place. Something like the Chinese mountain scene I copied in watercolor for a high school art class. The drifting narrow clouds over peaks, the gentleness and peace of it. We're always digging holes to China.

Did you think I would rest here in some new-found wisdom borne of experience, that the razor isn't as sharp, my whip as precise? Some of us struggle and reconcile.  I struggle and resist. Sophie's eyes and everything in them. We are unwitting Bodhisattvas.

  1. a manuscript or piece of writing material on which the original writing has been effaced to make room for later writing but of which traces remain.
    • something reused or altered but still bearing visible traces of its earlier form.

Thursday, October 13, 2016

Swimming to Shore

I lay on my bed for many hours yesterday. Flat on my back, staring at the ceiling when I wasn't playing Solitaire on my phone or carrying on on Facebook. I felt beyond drained. Spent. All used up. I felt filled with sorrow and sadness and loss and loneliness later that night. I thought about my friends who spend days and weeks and months in hospitals with their children. I remembered the many days I spent in hospitals during the early years of Sophie's life and don't remember how I did it. My body bears the memory in muscle and sinew, brain synapse. I think of Sophie's brain and kindling, the cascade of spark. I think of doctors in earnest boxes and those that believe so earnestly in them. Again, sorrow and sadness and loss and loneliness. I don't believe in the divine but am grateful for the divine comedy. Every thought spins another and the other is a gentle admonition that it's not that bad. There's perspective. There's Aleppo. There's my cousin in Mississippi who lost her beloved teenaged stepdaughter in a car accident on Tuesday morning. There's the very fact that I can lie on a bed for five hours staring at the ceiling, let sorrow and sadness and loss and loneliness wash over me, the bed a boat bobbing.

Bob Dylan won the Nobel Prize for Literature this morning, and I am glad. I'm glad because his poetry and song has shaped my adult life. Even as my mind doesn't understand, my body -- muscle and sinew, bone, mouth, tongue -- does, and I am alive. I got up and out of the boat and swam to shore.

Though you might hear laughing, spinning, swinging madly through the sun
It's not aimed at anyone
It's just escaping on the run
And but for the sky there are no fences facing
And if you hear vague traces of skipping reels of rhyme
To your tambourine in time
It's just a ragged clown behind
I wouldn't pay it any mind
It's just a shadow you're seeing that he's chasing

Then take me disappearin’ through the smoke rings of my mind
Down the foggy ruins of time, far past the frozen leaves
The haunted, frightened trees, out to the windy beach
Far from the twisted reach of crazy sorrow
Yes, to dance beneath the diamond sky with one hand waving free
Silhouetted by the sea, circled by the circus sands
With all memory and fate driven deep beneath the waves
Let me forget about today until tomorrow

Tuesday, October 11, 2016

Hospital Thoughts - Day Six

Sophie at home in her lavender lair


We have left the hellspital where we were taken care of by a lovely team of doctors and nurses and nurse assistants and EEG technicians and birds and butterflies and dragons and tigers, oh my. Thank you Michael, for spending nights and mornings with our girl. I thank you out there in the internets for your words of support, your emails and texts. Thank you, Tanya and Chris and Greg and Lisa for visiting me and bringing me food. I would surely have gone completely bonkers without your company. Thank you Moye for your conversation and sense of humor.  You've been sustaining me for twenty-two years and my friend for over thirty-five. I love you. Thank you Cara for taking care of my boys. Thank you Brittany and Aaron and Kathryn and Ben for dropping off food and flowers. You brightened all of our days. And dare I say it? Thank you Drumpf for making even a hospital stay with giant IV doses of Vimpat, giant hives, giant doses of Onfi, and hospital-acquired urinary tract infections as well as hordes of Doctors Who Don't Know How To Help seem utterly benign in comparison to your grotesquerie.

Monday, October 10, 2016

Hospital Thoughts - Day Five

It's all Dr House over here with a clusterfuck of neurologists and dermatologists and possibly allergists and rheumatologists all trying to figure out the Great Hive Seizure Mystery. Great minds don't think alike, at all, and everyone has a different suggestion for what ails Sophie. There will be more tests, and I'm getting just a teensy tinesy bit sick of all of it. Sophie has acquired a urinary tract infection while here which all conceded was hospital-borne. Charming.She is now on an antibiotic for that. She isn't getting any more Vimpat, so I guess at the very least we shall be skipping out of here on only one anticonvulsant in over eight years. That the one anticonvulsant is the benzo Onfi that we rather laboriously weaned her partially is a major bummer, but I'm not going to complain. There's still the hive thing, and the dermatologist who was literally the only physician that's appeared who's older than I am suggested that it was probably coincidence, I sighed and felt that momentary panic that is probably PTSD but has some validity as the real terror that once again, no one knows. Methusaleh had a six-pack of residents and students who were terribly sweet and earnest. One even asked me if I'd read Ann Fadiman's When The Spirit Catches You, and I almost told her that I read it probably before she was born and that despite its reputation for being culturally competent before that PC expression was even invented, I still feel it was biased toward the almighty Western medical system. Instead I told her that it's a beautiful book and smiled. Methusaleh talked about all kinds of things that hives can come from, and, frankly, I started to get a little nervous because it's all so --  well -- tentative and hypothetical. All suggestions are floated to me, sitting like some kind of dowager or dragon queen in a putty-colored fabric chair with a magnificent view of the mountains to my right, out of reach.I'm a dragon queen with a Bachelor of Arts degree in both English and French literature. I'm trying to finish a Norwegian novel called The Birds by Tarjei Vesaas but have felt so distracted the last few days that it's all I can do to ask why the food services department doesn't carry fresh fruit and only canned. My tail is curled up under the chair and a copy of Real Simple lies open on the purple plastic footstool to a recipe of Polenta Bake with Shrimp. But that's only a decoy as I'm actually plotting an aerial escape out the window with Sophie under my arm. Our cave is glinting there, under the setting sun and that long, purple cloud.

Sunday, October 9, 2016

Hospital Thoughts, Day Four

Aside from the putty and dirty lavender-colored walls in the hospital, I'm intrigued by the hospital gown print. Sophie almost looks like a Modigliani with her narrow face made even sharper by the tightly-wrapped turban. My mind wanders here and there during the interminable hours spent in the hospital. The hours are actually not interminable, though, as much as -- well -- hours. They literally while away. Hospital Time is something that I have struggled to articulate for as long as I've spent time in hospitals, and I want to do some justice to what, exactly, it means. The big round clock with the black numbers, hangs on the wall about four feet from the big black television and about six inches above the dry erase board that Robert the Nurse Assistant (when he introduced himself the first day, I thought he said I'm Robert the Narcissist, so I laughed and asked is it all about you? and he laughed and said that too) scribbles the names of who's attending us. The big black clock shows me every time I look up and glance at it (why? why do I glance at it? what does it matter?) what time it is, and I'm startled each time by how much time has gone by. I don't know how to explain this, really, and you probably won't understand unless you've spent some time in a hospital room. The time doesn't go slowly, really. It's not even boring. It's like being in a hospital makes a mockery of time. I've been here five hours! I'll think when I glance up at the clock, and in what seems like six minutes later, I've been here eight hours! It's really kind of astonishing. I feel the opposite of wired which would ordinarily be calm but it's not that either. Maybe it's a third state of being, a dimension all its own. I'm not complaining, just musing. During these hours not much goes on, which I imagine is something I should be thankful for as any number of things could be absolutely horrific in a hospital. The nurses pop in and out and the nurse's assistant, the one who takes vitals (weird expression, right?) tells me about her doll collection and then shows me a picture of the silicone toddlers that she dresses up and puts in a stroller and takes for a walk. I look up at the clock and notice that six hours have gone by as I spoon a pale macaroni and cheese into Sophie's mouth. I hear through the wall a man's voice saying Bend your knees, that's right, that's good. When I gaze out the large window facing east, I see some snow-capped mountains which I guess is nice, but really it seems like a mirage. The mirage would include the rest of you out there, living your lives, rain and sunshine, snow-capped, hours ticking and most probably defined where ours are blurry, cloud-covered.

When I think of the time, I think of bottle and a tiny ship suspended on a wave that does not move.

This morning while driving to the hospital I thought about meditation and how I am making a sort of meditation from this life. I was telling a friend that I'm not a chanter, but if I could make everything I do a kind of chant it was all I could do. Sort of an undoing. One of the nurses yesterday claimed that there's a meaning for everything, but you know what? I disagree. I don't think meaning is inherent in anything, really, nor is the absence of it. It's funny how we look for meaning and then find it. I think I'm making meaning which doesn't mean I'm in control but rather exercising some kind of sublime creative agency, and Sophie's situation helps to give me license to do so. Does that make sense? Of course I feel despair and depression, too, and that's okay. See how I'm whiling away the hours?

Bless your hearts for reading. Sophie is okay. She'll hopefully go home tomorrow, although we're not quite certain. The two doctors who've been treating her are pretty awesome in that they really include us as partners. Maybe not equal partners since I'm basically calling the shots, but they're smart and humble and one even told me that I was the bravest mother he'd met. I told him that because he's not a pediatric neuro, he probably hasn't met many mothers because the ones I know are so kick-ass brave, it'd take your breath away. They wish they could help us more, and so do I, but I'm struck by what seems to be a real shift in the neurologist/patient relationship. Since I haven't been in the hospital with Sophie for so many years, it's marked, and that's a good thing. I like to think that the work I and many of my peers have done for decades is finally making a difference, that medical students are being educated in empathy and humility. That or they're taking electives in theater and performance.

Saturday, October 8, 2016

You Cannot Fold a Flood

So, um, the hives came back.

My instincts are evidently still pretty sound. That big 'ole bolus of Vimpat was the wrong approach. The Sweet Doctor Whose Name Rhymes with Kevorkian confirmed them. He got on the phone with Doogie and our regular neuro and pulled the Vimpat. When I pulled back Sophie's hospital gown and saw the giant hives covering her, I felt terror (not at the hives but at the feeling they don't know what they're doing), a rush of anger (not at the doctors but at The SITUATION) and then just that same preternatural calm that I imagine has everything to do with Hospital Time and the weird stasis that comes along with sitting next to your child in a hospital bed for hours and hours. Then Sophie's father came in to spend the night with her and I drove the streets of the shitty back to my bed and fell into a deep sleep and dreams of boats and waves and whales. Honestly, I did.

So, what's the plan? The plan is to increase Onfi, the benzo, and work with the CBD. Someone asked me yesterday why I would continue to use the CBD when "it wasn't working." I'm not sure why Sophie fell out of the pretty decent seizure control she had for nearly three years. Maybe it was a virus, maybe it was the switch from brand to generic hormones, maybe it was a tilt in the earth's axis. As you can see (and what I've been writing and railing about for the past twenty years), the best doctors in the land don't know a lot either. Cannabis medicine is not a cure for seizures, but it's the only thing that has made a dramatic difference in her life. I really do think that we need to tinker with it and with the Onfi to get back to some kind of sanity. There are studies "out there" showing that the combination of Onfi and CBD helps to decrease seizures for some people. We're not fond of Onfi because it's basically a terrible drug that causes profound addiction and tolerance, but I think playing with it is in order.

I'll keep you posted. Thank you for buoying us the last few days. It means the world.

Here's a poem by the great Emily Dickinson that one of my friends sent me. Thank you, Anne.

You cannot put a Fire out—
A Thing that can ignite
Can go, itself, without a Fan—
Upon the slowest Night—

You cannot fold a Flood—
And put it in a Drawer—
Because the Winds would find it out—
And tell your Cedar Floor—

Emily Dickinson

Friday, October 7, 2016

Doogie Howser, Sophie and The Tiny Little Mother Mind

One very fucked up EEG

Doogie Howser and I had a good pow-wow over Sophie. The plan is to hopefully get her back to baseline (which is never normal, so don't be overly alarmed by that EEG) with a giant dose of Vimpat. You might recall that we reduced Vimpat because we thought the giant hives were a toxic reaction. Maybe not, though. We also discussed the possibility that when The Evil Insurance Company switched Sophie's hormone med to a generic version six weeks ago, it might have thrown her off and exacerbated the situation. Anything is possible, apparently. We're in a very sophisticated medical building with all the fanciest equipment and greatest minds, including this tiny little mother mind, yet no one really knows what's going on. I am of course struck by how much has changed in that the video monitoring equipment is wildly informative, and I can take a picture of it with my tiny phone, yet little is changed from twenty years ago as far as treatments (the drugs! the drugs!) for Sophie. Last night, in conversation with the doc whose name rhymes with Kevorkian (how perfect, I thought, and unfortunate), I casually suggested in my dark way that instead of asking me what I wanted to do, we should just put a dart board up on the wall with our options and throw darts at it. The Doctor Whose Name Rhymes With Kevorkian looked at me like I was insane but tittered. The nurse, of course, burst out laughing. Later, he brought in a whole stack of consent forms for me to sign, and when I asked him what I was signing, he said it was for the video telemetry, and I said that I wanted to be sure that it wasn't for a hemispherectomy, and he looked startled and I said, I don't really trust you neurologists, you know, and we all had a raucous laugh. This morning, Doogie Howser claimed to be a "believer" in CBD. I told him it wasn't a religion, but I got the distinct sense that he was cool with it. Y'all know the party line. I think The Party really wants to get Sophie back to the control she had on Onfi, Vimpat and CBD but The Line is to "ignore" the CBD. The tiny little mother mind is on it, not walking The Line, as usual. I'll keep you posted.

Sophie is sleeping right now.  As you can tell, I'm ok. Strangely calm which might perhaps be dissociative but could also just be -- well -- calm. 

Thursday, October 6, 2016

Fetal Position Requests

My favorite Bitmojii currently

Which do you want? Bad news or good news?

The bad news is that I'm not going to Italy on Saturday with my father and sisters and cousin.

The other bad news is that I'm going to take Sophie into the hospital now to see what the hey is going on with her. She's declined quite a bit, and we're going to do an overnight video EEG. I'm concerned she might have developed ESES (electrical status epilepticus in slow wave sleep) which she's had twice before. I only list this second because it helps to soften the blow. We do what we do to cope. That's how we do it.

The good news is that they have a bed at the hospital, the nurses so far have been really great (one acknowledged that since I've been doing this for two decades, I must be really on top of things), and I'm actually feeling relieved that decisions have been made and we're moving forward.

Do what you do as far as sending good vibes Sophie's way. The whole prayer thing eludes me, but I welcome them, along with light, love, strength, courage, peace and, of course, leftist politics.

Sophie's struggling, and she's still the light of my life.

All will be well
All will be well
All manner of things shall be well.

Tuesday, October 4, 2016

It's Gonna Be Dope

That drawing above has nothing to do with the post, other than it's an apt illustration of the state of my mind, and I'll leave that up to you to interpret as you'd like, dear Reader.

Over the last couple of weeks, we out here on the southern edge of the continent have been hearing about a swarm of earthquakes that hit the weird Salton Sea to our east, and over the last few days, there've been dire predictions that The Big One was going to hit the Los Angeles area very, very, very soon. Like by today. I got a number of notifications of this "fact" from friends and family yesterday, one while I was trying on clothes in a Target dressing room that prompted me to quickly put my own clothes back on, search for Oliver in the gaming section, acquiesce to his request for a box of Fruity Pebbles cereal and make a bee-line out of the place and into my car and out of the underground parking garage with visions of its exposed pipes and Best Buy electronics crashing through and onto the roof of my sexy blue Mazda.

Oy vey.

Here's a text I got from Henry this morning:

On the plus side, I'm so desperate to find a meaning for Sophie's recent decline that I'm thinking the swarm of earthquakes and impending Big One might be the reason for it. This kid's brain is incredibly sensitive, so who knows -- maybe she senses the earth's discomfiture? There's a strange and apt parallel between earthquakes and seizures. Warnings of earthquakes are a bit like medications for seizures -- both giving us the illusion of control. When I'm not lying in bed in the hours before dawn, one part of me going to the dark side, as my dear friend likes to say,  I am busy trying to figure things out, go through variables, talk to the wise people I know, meditate and stay calm. I've learned some degree of equanimity over the last twenty years despite the imminent threat of destruction nearly every single day, so I guess I'll keep at it. And while I wish that The Teenager could have at least written how much he loves me for being the best mother on the planet, I'm encouraged by his attitude.

It's gonna be dope.

Sunday, October 2, 2016

Tripping to Sicily on a Leopard

Looking Sicilian

On Friday night ten people gathered at Casa Aquino to discuss Giuseppe Tomasi di Lampedusa's novel The Leopard and to eat a Sicilian spread. I think we were unanimous in our love for the novel, and the food disappeared, so I believe everyone was happy. Before I post pictures and the menu and have your attention, I wonder if you might hear me out about an idea I have of making this Books & Bakes literary and food salon an online business as well. What I'm thinking is a website where one can download the whole package -- the book suggestion, discussion questions and background/supplemental material and links, a full menu for the accompanying meal and recipes to download with links to where products can be found or ordered. You would, basically, be able to have a literary and food salon of your own, wherever you are and with whomever you'd like to invite, and I'd provide you with everything except, obviously, my physical presence. I'd appreciate your comments and suggestions for how much you'd pay for something like that. Given the constraints of caregiving, I am really trying to get creative with freelance work, so this might be a possibility.

Let me know.

In other news, I am going to Sicily with my sisters, cousin and father next weekend. My father turned 80 years old last April, and we decided that we'd like to take him to the old country. We'll be going to Sicily first because we've never been, but then we're headed to Calabria and the town where our family began. I am not sure what kind of internet service I will have while away, nor will I know if I can post from my phone, but if I'm gone for ten days, you'll know why. I'll take lots of pictures, in any case and post them on Instagram, if you'd like to check out my feed there.

Here's the menu from Friday night and some photos, excepting the dried fava bean soup, homemade cannoli and vanilla ice-cream. I forgot to take pictures of those! I would like to give a shout-out to my cousin Danielle who lived in Sicily for years and helped me with the menu. I ordered genuine Sicilian products from Gustiamo, a wonderful Italian food distributor where she works and highly recommend the outrageously delicious Sicilian extra-virgin olive oil and Sicilian sea salt. OMG, as the kids say.

September 30, 2016
The Leopard
By Giuseppe Tomasi di Lampedusa

“If we want things to stay as they are, things will have to change”


Campari and Blood Orange Soda

Polipetti Murati
Slow-Cooked Octopus with Estratto and Wine

Sicilian Dried Fava Bean Soup

Pesto alla Trapanese with Busiate Pasta

Insalata di Lenticche con Menta e Scorzetta di Arancia
Lentil Salad with Mint and Orange Zest

Citrus Salad with Anchovies and Black Olives


Vanilla Ice-Cream with Sicilian Olive Oil and Sea Salt

Big Ole Pan of Caponata

Caponata and Italian Flatbread

Insalata di Lenticche

Citrus Salad of Blood Oranges, Oranges and Grapefruit with Anchovies and Sicilian Black Olives

Polipetti Murati

Pesto alla Trapanese with Busciati Pasta


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