Friday, May 22, 2015

Books & Bakes Sneak Peak






Tonight is the fifth month of my Books & Bakes Literary and Food Salon. The May selection was the kooky memoir/cookbook Eat Me, The Food and Philosophy of Kenny Shopsin. I shook things up this month by asking people to bring a dish from the book in lieu of paying full price. It looks to be as kooky a line-up of food as the book was to read! I'm filling in the gaps with a main dish that isn't in the book and a dessert (Shopsin only serves milkshakes, as far as I can tell). Oliver took the photo above. I made Honeycomb Vanilla Ice-Cream and Brown Butter Poundcake. It'll be slathered with meringue and torched to make Mini Baked Alaskas. I got the recipes from Food 52, an amazing site to check out when you have a moment.

If you're in the southern California area, please think about attending one of my salons. Share with your friends, if you have a hankering to help my little cottage business grow. You might consider having me come to your home with your friends for a get-together, a change from your usual book club, a gift for someone or an office party. For more information on the June 22nd salon, see my other website. We're reading Toni Morrison's The Bluest Eye.

Wish you were here!

Thursday, May 21, 2015

Books as a Constant

The stacks in Wilson Library, University of North Carolina
at Chapel Hill


When I feel afraid and overcome, I turn to books and stories.

I've written about them before -- the musty floors of old Wilson library at UNC in Chapel Hill where I spent hundreds of hours studying, wandering around, my fingers trailing the dusty spines of books forgotten. On the top floors you could find an empty carrel with a wooden desk scratched with the initials of long ago lovers, a peace sign, a curse word. I kissed my boyfriend there, sitting on his lap, our books and notebooks and pens scattered. Fifteen minutes before 11:00 at night, an ancient man, an Ichabod Crane with a head roamed the stacks, ringing a giant cowbell to warn us of closing. You rode creaky elevators down and then waited in line with other library rats (the less studious studied at the more open library or in the magnificent reading room where you could see and be seen) to have your backpack riffled through, the security measures of the last millenium. Then out onto the broad steps of the library, the campus spread out in front of you, the air velvet for the library behind you, the gracious oaks and lawns stretching forward into some impossibly benign future.

I can go there whenever I want -- to the carrels, to books, to metal shelves and scratched love notes, to kisses and love, leaves on trees and lazy days when my mind was busy with Auden and Li Po, with French verb conjugations and Nicaraguan history, figuring out whether he loved me or not and so on. That library, those stacks, that time in my head sustains me, sometimes, when I feel suffocated by the minutia of the life I live now. It is, in fact, books and my memory of them, how I felt as I read, how I lost myself in them, that sustains me in constancy. It is, in fact, books and the present, how I feel as I read, how I lose myself in them, that sustains me in constancy.



What are you reading?


Wednesday, May 20, 2015

Jane Hirshfield and Moye



My friend Moye and I went out to dinner last night to celebrate her birthday and listen to the poet Jane Hirshfield at the Grand Central Library. We ate outdoors at a fancy restaurant that sits in the courtyard of the library. The night was beautiful and breezy. We ate French onion soup and kale salad and some kind of lamb dish with papardelle that I couldn't finish because I was full. We laughed, as always, and shared our lives. Moye is easily the kindest, most gentle woman I know who is also staggeringly talented and funny. Honestly, she might be perfect. Later, we sat next to each other in the small auditorium, our shoulders touching in the small seats, and I wondered at the beauty of the nearly forty years that have passed since we first met and the many times we sat together in English classes throughout middle and high school, listening to poems and teachers. We've gray-streaked hair and crows' feet now, yet we share a raucous sense of humor and love for what's beautiful.

I don't know Jane Hirshfield's poetry well, but I have read a few of her spare and beautiful poems over the years and recently savored an interview with her in Tricyle Magazine. In addition to being a poet, Hirshfield is also an ordained practitioner of Soto Zen Buddhism. Here's an excerpt from the Tricycle interview:

At any moment in a life, a person has this choice: presented with suffering, do we try to escape or to enter it further? Art’s gate is deciding to move toward entrance and not absence, and that choice has been a fundamental and shaping force in my life. We can’t sleepwalk through suffering: by its own definition, suffering is insufferable, unbearable, and so must be worked with. Since childhood, the way I’ve worked with it is by turning toward the gate of entrance: by writing poems.

Here's a poem:

As a Hammer Speaks to a Nail

When all else fails,
fail boldly,
fail with conviction,
as a hammer speaks to a nail,
or a lamp left on in daylight.

Say one.
If two does not follow,
say three, if that fails, say life,
say future.

Lacking future,
try bucket,
lacking iron, try shadow.

If shadow too fails,
if your voice falls and falls and keeps falling,
meets only air and silence,

say one again,
but say it with greater conviction,

as a nail speaks to a picture,
as a hammer left on in daylight.

Jane Hirshfield

Here's what she wrote in my copy of her new book, The Beauty:


Tuesday, May 19, 2015

Dream Notes



suffocating
even the recollection of the suffocation

All I can think of is how she struggles! said Oliver after breaking down yesterday in the car on the way home. He had just gotten his first shot at the doctor's office. (not a dream note)

anger/despair
the O of Sophie's mouth

cold, hospital hallways
elevator doors sliding open
dirty rooms
a cup of urine on the window sill, looking out to a darkened air shaft
(not a dream note)

the elevator door, the yawn of it
stretching open into the years
remaining

Monday, May 18, 2015

Cannabis Oil Update And Another Regurgitation of Sophie's History For Emphasis*

photo by Lynn Johnson for National Geographic Magazine


My friend Ray Mirzabegian is featured in an article about medical marijuana in this month's National Geographic magazine. Ray is the man who has a young daughter with refractory epilepsy, who drove to Colorado several years ago when he heard about the the Stanley Brothers and their cannabis oil. He learned everything he could about the oil, grows and makes it for a hell of a lot of children and adults here in southern California through Realm of Caring California. He's also one of the nicest guys on the planet, and I don't know what I'd do without him.

Right now, we've gone back to the original California Charlotte's Web that Ray makes and have stopped using Charlotte's Web Hemp Oil. While CWHO "worked" moderately well for Sophie, we've been struggling to find the same degree of seizure control and have decided to go back to the product we used when all the really good stuff happened. Sophie is, of course, on a little more than half of the benzodiazepine that she was on a year and a half ago, and if you read anything about withdrawing benzos, you realize it's a horror show. I've read adults report that they can experience withdrawal symptoms months and months after they're off the drug completely. If it's hard for you to imagine how difficult the process is, imagine peeling back your scalp and bathing your brain in a powerful narcotic twice a day for eight years. That would be Sophie. I don't think we can properly assess cannabis oil's true effectiveness until she is off the benzo completely, and that might take us another six to eight months. Then we've got to work on Vimpat, another powerful drug that she's been on since October, 2008 when it was newly approved for use in epileptics over the age of 17. Do the math.

In the meantime, though, she has some stunningly good days and no really bad ones. We are quite tolerant of one seizure or so a day, especially since they're brief and she seems to recover rapidly. A bad day might be several seizures in a day with drooling and clamminess, but they're not happening more than once or twice a month. Did you know that we haven't used Diastat, the rectal Valium rescue med, since we began the oil? KNOCK THREE TIMES.

I went to a party on Saturday night for a friend of mine and found myself engaged in conversation with a couple of people about our experience with cannabis oil. I told one man, a physician, that Sophie had been on 22 drugs in her twenty years. He said, That's impossible! There aren't even 22 antiepileptic drugs! I began naming them and then called it a day when he conceded that he hadn't heard of several of them. When I got home later that night, I wrote them all down and sent them to my friend to forward on to him. Here's what the list looks like:

Sophie’s Drug History 1995-2015

ACTH
Prednisone
Nitrazepam
Carbamazepine
Depakote/Depakene
Phenobarbitol
Vigabatrim
Felbatol
Neurontin
Lamictal
Banzel
Klonopin
Ativan
Diastat
Keppra
Zonegran
Topamax
Trileptal
Frisium/Onfi

Vimpat
Micronor (progesterone to help mitigate the hormonal swings that exacerbate seizures)
IvIg (intravenous immunoglobulin, adminstered for ESES, 2010, 2013)
Ketogenic Diet (two six-month trials, 1995 and 1999)

What was interesting to me was when I checked on the drugs -- when they were approved for use by the FDA and for what age child. You know where this is going, right? Many of those drugs were brand-spanking new when we gave them to Sophie (like Vimpat, the one she's been on for seven years), several were only available through compassionate protocol or through pharmacies in England and Canada or Germany and many were approved only for use in children over twelve or seventeen, if at all. At no point was Sophie on one of these drugs at a time, but rather on multiple combinations -- a near constant titrating up and down and adding and subtracting for the first six or so years. I don't feel like listing the side effects of these drugs or even the reasons why we discontinued them. Think anorexia, thrush, extreme irritability, sleeplessness (for YEARS), severe sedation, dehydration, recurrent fevers, rashes, hallucinations, psychotic behavior, increased seizures, new seizure types, headaches, nausea, ataxia, excessive drooling, impacted stool, depression (yes, Sophie's neurologist diagnosed depression many years ago, so we discontinued the drug). Well, I guess I listed some of them. 

I don't remember when, but at some point I just plain refused to add a third drug to a regimen until one of the two she was on could be weaned. Not a week goes by that I don't hear of kids on three, four, five and up drugs, still seizing. What the hell? When Sophie was about twelve, I refused to try any more new drugs unless Jesus Christ offered them to me. I firmly believe that relying on Jesus was no more or less scientific than relying on the old dart board that the epilepsy docs used. No one reported me to Child Protective Services. Sweet Jesus -- he never showed up.

Did I mention that at no point was Sophie seizure-free or even better? Can I emphasize enough that despite these various combinations of drugs/poisons and the good intentions of several superb neurologists and scientists, no one really knew what the hell was going on in Sophie's brain other than that it was supremely dysfunctional? Did I mention that during these nineteen years (and continuing today), Sophie received Chinese herbal teas and acupuncture as well as regular appointments with an osteopath, homeopath and nutritionist? Did I mention, too, that after two rounds of vaccinations, even as her immune system was fully compromised by high-dosage steroids, she was never vaccinated again? I firmly believe that without these complementary therapies, the refusal of vaccinations and a diet rich in whole foods, she'd either be dead or far more compromised than she is today.

Without Ray and all the people who are working so diligently to research cannabis, Sophie would also still be seizing.









*Please humor my repeating this stuff over and over if you've read it, over and over. I still get new readers and emails weekly asking for information. Every now and then, I feel the urge to evangelize a bit. 



Quotes from Favorite Novels

Waiting on Sophie's cannabis
May 17, 2015




What is the meaning of life? That was all – a simple question; one that tended to close in on one with years. The great revelation had never come. The great revelation perhaps never did come. Instead there were little daily miracles, illuminations, matches struck unexpectedly in the dark; here was one. This, that, and the other.

Virginia Woolf, To the Lighthouse
1927 

Sunday, May 17, 2015

Death and Robots





I took Oliver and Sophie down to a boat festival in Redondo Beach late this morning. We left Henry at home, sleeping as is his wont. After walking around all the booths, looking at the beautiful boats, and eating some fried seafood at one of the clubs that had opened its doors to festival-goers, we drove back home and listened to the Moth on the radio. First we heard Bliss Broyard's very first Moth performance when she told the story of discovering her father was black when she was 23 years old. Oliver thought it was weird, but he listened and didn't beg to switch to his godawful music station. The next up was the Indian-American physician Siddhartha Mukherjee who told an amazing story about his grandmother, her life and how she died. He recounted a memory of traveling on the river as a child and rounding a bend to see the dead being bathed and then put on funeral pyres, and then rounding another bend back into "normal" life. When his grandmother died, he and his father carried out the simple rituals of death -- the wrapping of the body in a white sari, bathing the body and then taking it to be burned. He compared that to the dying he witnessed in the United States as an oncologist. He described a woman with breast cancer who he had treated and who had died overnight after being admitted. He went to her funeral and noticed that lipstick had been applied to her lips and described how the whole process of death had become sanitized. He asked his students later, How many of you have actually lifted the body? What does the weight feel like? He spoke about gravity and the grave. He spoke of how our culture is actively forgetting the rituals associated with death. 


Oliver said, That's kind of true. I agreed. It's kind of creepy, too, he added, and I talked a bit with him about why that is so. I told him about a friend of mine whose young daughter died, how she and her husband and their other daughter carried out some of the same rituals, how beautiful that was to me. Oliver, who had just recently attended the Eastern Orthodox funeral of my aunt noted that the service made him feel weird and excluded. He reminded me that on Mother's Day he had seen a giant bee flying about, and in the moment he saw the bee, he thought of Aunt Yvonne and how weird that was, too. We were silent for a bit. I told him that when I die, I would appreciate a non-religious service that celebrated my life and that I would prefer something simple as far as my body goes -- that I'd like to be cremated and my ashes scattered somewhere I love. Then again, I said, since I'll be dead, it doesn't much matter how and what you do with me. Oliver said, When I die, I want my head to be removed from my body and frozen until it can be put on a robot, that way I can be in the future, too.



You can listen to Mukherjee's brief talk here.

Saturday, May 16, 2015

Saturday Morning Poetry

Hilton Head, August 2013



Poem Not for My Son

There are things you can't tell
a child -- they'd sit too heavily
upon him, like the crowns
of young royalty:
Tutankhamen holding up
that twelve-pound crust
of gold and emeralds
on his slender neck.

So I gaze at my boy
only when he's sleeping,
when the torrent
won't sweep him off
the cliff, when the beam
won't scorch his retina.

He works out now,
lifting cold black
barbells, his muscles rising
like good bread.

Think of every great thing:
rush of grain
through the elevator shaft,
the crush of water
fathoms down, glaciers
calving, the surge and weight
of tectonic plates. I shut
the door on my love.
Just a faint glow seeping
under the crack.

Ellen Bass

Friday, May 15, 2015

The Simpsons and the Boston Bombings



Oliver cobbled together all of his giftcards and money received for his birthday and bought himself the new Simpsons' Kwik-E-Mart Lego set. He put the whole dang thing together yesterday and this morning, and I have to say it's enchanting. I'm not a Simpsons' watcher, have never really gotten into it, but that's mainly because I've never gotten into cartoons, even as a kid. I do appreciate the humor that I see every now and then, and I still remember the episode when Marge and Homer go to marriage camp and the counselor declares that "it's all his fault" when Homer fails to show up at a therapy session. The other episode I remember is when Homer finds himself on death row and then realizes that he's actually part of a reality show. When I looked it up this morning on Wikipedia, I saw that the title of that episode was The Frying Game, and shortly afterward, I saw on the news that the Russian guy who bombed the Boston Marathon got the death sentence for his crimes. While Oliver screwed together a few more tzotchkes on his set, I told him this news, and his response was Awesome! My stomach curdled, to tell you the truth, even as I continued to read about the verdict, including the words of Sister Helen Prejean who evidently spoke in Tsarnaev's defense. Here's the thing: the institutionalized killing of another human being is nothing but revenge. Let's call it like it is. Strapping a human being to a bed and then injecting him with poison in the dead of night while people watch is more vile than a pathetic excuse of a young man packing a backpack full of nails and dropping it at the finish line of a marathon, blowing off the limbs of innocent people and killing three people. It's more vile because it's a collective effort by an institution and carried out under the guise of justice. It makes me sick, and it's not a reality show.

Thursday, May 14, 2015

Rain, The Minotour, Mrs. Braddock's Laugh and What's Baked





Raindrops on roses
and echeverria
Dear, dear Jesus
thank you for rain 
and the plumeria.



Do you remember The Efforts To Acquire The Chariot and then Busgate? In a nutshell, it took about eighteen months and some serious Insurance and MediCal wrangling to get a wheelchair for the girl (because, you know, I might have been making up her disabilities and trying to acquire a $10,000 piece of metal for the hell of it), and then too many IEPs and phone calls to LAUSD that brought to mind an episode of Monty Python to get a lift bus for her. Sophie is supposed to have been riding in her chariot on a lift bus for, basically, years, but it wasn't until this week that one mysteriously arrived at her school. I got a call on Tuesday afternoon from her bus aide, Saint Charles, at about 3:30.  The lift is broken, Charles reported, we're going to be late because we're waiting for a mechanic. I threw back my head and laughed, Mrs. Braddock-style (watch this scene, if you don't know what I'm talking about). God, I love that scene. How about her psychedelic shirt, Mr. Braddock's robe, his drink, the half-baked comment -- hmmm, I digress. I told Charles that rather than wait for the LAUSD bus system mechanic (visions in my tiny little mother mind™ of The Man Behind the Curtain in Oz pulling all those levers to get the bus mechanic ), I would drive over to Sophie's school and pick her up myself, so by the time I got there, picked her up and brought her home it was about 4:15ish, and just an hour after she had been dismissed. At 5:30, the telephone rang, and when I picked it up, the Efficient LAUSD Robot said, This is a call from the LAUSD bus system. Your daughter PAUSE Soooophie is on a bus that will be approximately 75 minutes late.

Go back to that link of Mrs. Braddock's fantastic laugh.

Today, the lift bus pulled up while I stood at attention on the sidewalk and then waited as The Busdriver did some kind of maneuvering inside, walked to the front of the bus and then down the stairs and came out. I told her that I didn't think the lift would clear the curb, that she would probably need to back up to the driveway, so she stood and stared a bit and then walked back to the bus, shifted it into reverse and backed it up. The beeping sound emanating from the bus was so loud that I had to cover my ears. When the bus driver climbed back out of the bus to deal with the lift, the beeping continued, and as the lift lowered, I saw that Sophie had startled into a seizure so I asked the bus driver to please turn off the beeping sound and simulataneously put my hands over Sophie's ears to muffle the cacophony. I also noticed that the bus has a name, and it's Minotour. You can't make this shit up, as my old writing instructor used to say. The letters, spelled exactly like that, are right above the door. Now, I am prone to metaphorical flights of fancy, as you know, and I know you lovely Readers are, too. Let's have a game about a bus named Minotour.

Give me what you got.



Wednesday, May 13, 2015

Hedgebrook, Writing and Space Dreams




Hedgebrook isn't a retreat. It's an advance.

Gloria Steinem


I bet you've forgotten that last year I was awarded a three-week writing residency at Hedgebrook on Whidbey Island. I haven't forgotten, but I do admit to thinking it was a dream and that June would materialize and I would be doing the usual June kind of thing which I write about ad nauseum here on the old blog. The thing is, it isn't a dream, and in a little over a month, I will be flying to Seattle and then to my little cottage to write and walk and read for three whole weeks. I met a poet the other day who had just completed a residency there. She was also a judge for the grants, and while the applications are anonymous, she told me that the nearly 1500 of them were of very high quality. She said, You must be a really fine writer, and I demurred and then wondered why I couldn't just accept that I'd gotten one, that I had worked hard for it and that this three weeks is deserved. The place is magical, she said. You will write and you will rest.


Again, a dream.


I  told a friend that I write now whenever I have a free moment and certainly for hours and hours each night. There's no writer's block for me, to tell you the truth, and the writing is a pleasure, not work.  I write under pressure, the pressure of life, in the spaces around life -- a life of teenagers and the minutia of extreme parenting (the seizures, the diapers, the wrestling with systems of care) -- and it will be quite an adjustment to just write with space and life merged. Does that make sense?


This place expands time.

Carolyn Forche


It's still a dream, I realize, as I type it out.

I'll be working on a project that I've longed to shape into a book. I'll be drawing on some of the How We Do It posts and hopefully weave them into meditations about disability and identity, about what makes us human or Other and so forth. It's inchoate and also pushing to be written. I have my old manuscript as well to shape up and finish, a memoir that has never been given a proper story arc and that demands an ending. I think I have an ending in our cannabis story and hope to gain some of my juju back and finish it up.

Check out who is on the Creative Advisory Council at Hedgebrook here.

Good lord. I told you it was like a dream, and I half expect to get a peck on the shoulder at some point with an apology for what was, apparently, a mistake. Oh my goodness, they might say, the Elizabeth Aquino that we chose is doing cutting edge work about poverty in the Phillipines! We are so sorry! Then they'll hand me a basket of food and a kayak to make my way back to the mainland, back to life and writing in and of the spaces around that life.


Wake up!



Tuesday, May 12, 2015

The Big O Gets a Checking Account, a Debit Card and a Name Change



Kids don't learn cursive anymore, and if they do, they forget it when they don't use it. Yes, I know some of you think the loss of mandatory instruction in cursive ranks up there with the other downfalls of modern civilization and depravity, but I honestly could give a flying foo foo. When prompted to sign his name, Oliver had a moment of panic and then with painstaking effort and concentration did so. He lay the pen down and told me how much he hates how long his last name is and what a pain it is to write it out. That's why I'm changing my name when I get old enough, he reminded me. Oh, yeah, I said, What are you changing it to again?

Luck, Oliver replied, Oliver Luck! Doesn't that sound dope?

Reader, I believe he will change his name when he's old enough to do so, and when you see it printed everywhere you'll remember this tiny little blog post, sprung from my tiny little mother mind.™

Monday, May 11, 2015

Cups



You shine, like a sunflower.

I'm stuck.

I need to divest myself of junk, both proverbial and otherwise.

I have too much stuff.

We are cups, constantly and quietly being filled. The trick is knowing how to tip ourselves
over and let the beautiful stuff out. Ray Bradbury




Sunday, May 10, 2015

Twenty Beads



The first thing I did this morning was open the long, yellow envelope with the word MOM scrawled across it. Sophie brought it home from school on Friday afternoon, along with a tomato plant in a green ceramic pot. The envelope held a beaded bracelet, purple, pink and pearly plastic strung on elastic. I slipped it over my hand and raised my arm until it stopped on that generous part of my arm above the elbow. When I lowered my arm, the bracelet fell to the floor, so I picked it up and put it in the dish on my dresser that holds trinkets, a safety pin, a Buddha coin, and earring whose pair is lost. A lost pair. Pare me down.

Even in year twenty, these plastic beads strung on elastic, sprung.

Sophie's eyes implore me. Beseech, plead, do something. I'm not sure if I'm projecting the implore, the beseech, the plea. Do something. She and I are knit, intertwined, beads on a string, strung.

Is imagination greater than identity?

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