Orange County Fair

The boys and I ventured down south and met my friend Lisa and her daughter Annabelle for a day at the Orange County Fair. We ate a funnel cake with "fresh" strawberries and whipped cream, ceviche with tortilla chips, deep-Fried Oreos, a deep-fried Twinkie, countless bottles of water and a giant doughnut with maple glaze and crumbled bacon. I got on the Ferris Wheel and freaked out a bit when we hung, suspended at the top, but I pulled it together and enjoyed the view. I chit-chatted with Lisa as our kids rode the crazy rides, ran through the fun house with Oliver, viewed a 13-foot alligator and countless livestock, saw some pigs race around a track and sat in the shade watching the wheels go round and round.

What the world needs,

Henry's drawing
of the Buddha in a smear of chocolate sauce on a plate, 2012

is less talk of miracles and more creation of them.

Henry's portrait of Sophie, 2003

Le Silence

Le Silence, Odilon Redon

Le Silence is the title of the above painting by the French artist Odilon Redon. I won't ever forget the moment I saw it, nearly thirty years ago, somewhere along the coast of France in a museum with a retrospective of his paintings. I'd never heard of Redon and still don't know much about him, but that painting made me stop and stare and has always resonated with me.

Well, I'm not going to be silent about this -- this question I've had all morning -- this thought:

A man was executed last night in the state of Texas for murder. His clemency appeal had been denied by the Supreme Court of the United States. The man had an alleged IQ of 61. He was mentally retarded. The accuracy of the IQ number was evidently in question, and the man was perhaps not as significantly mentally retarded as originally determined.

In the state of Pennsylvania, a top Republican operative made a joke to a crowd of 200 people about Obama supporters being "mentally retarded." Evidently, not a single person objected. Here's the joke: I was very embarrassed. I was in this parking lot and there was a man looking for a space to park, and I found a space for him. And I felt badly — he looked like he was sort of in distress. And I said, ‘Sir, here’s a place.’ And he said, ‘That’s a handicapped space.’ I said, ‘Oh I’m so sorry, I saw that Obama sticker and I thought you were mentally retarded."  You can read that story here.

During the last week, I've been arguing, fruitlessly, in the comment section with a man who insists on calling me a libtard. You can read a bit of that here.

What kind of state is Texas that kills a man who is mentally retarded? What kind of country do we live in that allows the death penalty when every single other western, industrialized, so-called "civilized" country has banned it?

What kind of country is this where people support an openly bigoted corporation that sells processed fried chicken sandwiches behind the mantle of "freedom of speech," defends the right to carry semi-automatic guns in the name of liberty from tyranny and kills a mentally retarded man in the dead of night and calls it justice?

Why should we be proud of ourselves?

Why are we silent? How can those of us who agree that this action is obscene -- the state-sanctioned, institutional murder of a mentally retarded man --  change it? How can we turn aside or laugh, even uncomfortably when people continue to use the mentally retarded, people like my daughter Sophie, as the basis for their jokes and criticism?

I think we need to scream:

The Scream, Edvard Munch

Jim Roddey, Pennsylvania's Allegheny County GOP Chair

info@rcac.net  Telephone: 412-458-0068
(Mr. Roddey's phone: 412-512-6747)
The Republican Committee of Allegheny County
100 Fleet Street, Suite 205
Pittsburgh, PA 15220

And I realize that it's stupid to argue with others on a conservative blog. I don't want to say I'm like a fly to shit, because that would imply I think conservative views are shit. I really don't.

Seizures, the universe, humor, grace and God

God, Blessing the Seventh Day - William Blake, c. 1805

My last post got many kind comments, some nearly over the top in praise of both my writing and miracle-creating abilities. I'm so thankful for this incredibly supportive community, and while I'll admit to being a kind of comment whore, I am, most decidedly, not a holy person with a direct connection to God and miracles. I'm not sure I even believe in miracles -- other than those tiny moments of grace when despair and worry and trial lift, effortlessly, and leave peace and humor and relief in their wake. I've experienced many such moments of grace and feel it's my duty, in a way, to be open to them, to acknowledge them, to give them attribution, and while I hesitate to use the word God in these over-religious, political (as opposed to spiritual) times, I am deeply grateful to what is, apparently, an abundant universe, where divine love always balances out its opposite.

When I interfered with Sophie's seizure, I was really only practicing the advice given in one of my own bibles, a book called Epilepsy: A New Approach by Adrienne Richard and Joel Ritter, M.D. I bought this book in the late 1990s and believe there's a newer edition, but its subtitle - What Medicine Can Do, What You Can Do For Yourself explains its initial appeal to me when I was just beginning the godforsaken journey of uncontrolled seizures, when Sophie was a bitty baby, drugged out of her mind quite literally, and I began to realize that my daughter's brain was perhaps as dark a space as the heavens, before God made some order, and that it might, perhaps, be up to me to create a bit of light. That book, along with Anthony Weill's Spontaneous Healing wasn't handed over to me like tablets, but rather appeared on a pitiful shelf of books in the Alternative Medicine section of the Barnes and Noble on 86th Street in New York City. Yes, it was a moment of grace, and I'm deeply grateful to Richard, Ritter and Weill for opening my eyes and helping to set me on a path that perhaps afforded more potential to Sophie than were I to follow the traditional one.

Here's the passage:

STARTLE-AND-SHAKE

A team of researchers from the University of Utah Medical School set out to test the possibility of stopping seizures in a population of developmentally delayed schoolchildren. In almost every case, the children had no more seizures.

The method the researchers used was startle-and-shake. It requires the existence of an observable preliminary behavior: staring at a flat surface, raising the arms, a strange tone of voice, hyperactivity, and so on. The support person acts to interrupt the sequence by following these steps:

1. Shout "NO!" loudly and sharply to draw attention outward.
2. Grasp the person by the shoulders and shake him or her once. This changes the body's preseizure mode.
3. Give a little reward, a hug, an excited "You stopped it!" Offer any sort of praise or love for arresting the seizure. Let the good feeling, not candy or whatever, be the reward.

As for Oliver calling me a miracle-maker, it was said with great irony and therefore another moment of grace -- that my children can rise up and up and up and find humor even in the darkest moments is a wonder, something I am so grateful for that I'd venture to say it sustains me.

How We Do It - Part XV in a series

Sophie's hands were clammy all day and I'd say that clammy hands and feet, along with drooling, come in second behind seizures as most disturbing elements of a life. One means the other and the other means one, and we'll never know for sure what comes first or how to make it stop. We were sitting at the kitchen table eating dinner, Sophie tilting to the left as if her bones had come undone, clammy hands and feet and un-knit bones, an unseen seizure, did it come first or after but never mind, we're not used to it and rather annoyed by it, the boys and I, sometimes. No less Sophie, who is floating, I'm certain, clammy, her mouth a bird's barely open, hungry, plaintive in a speechless way. I spooned food into her mouth and listened to her brothers, their talk as concrete as Sophie's un-knit bones and vowels and clammy hands slipping. I moved my eyes to their's and in the moment it took to look, Sophie's own eyes rotated to the right and upward but in that same moment, the moment that I looked at the boys, I saw her eyes, too, and I said, loudly, STOP SOPHIE, NO, SOPHIE, STOP SOPHIE, NO SOPHIE, as my eyes rotated from the boys to hers and hers rotated away from the right, back and stared right into mine. Eyes were all rotating, and the pause that made room for my shout ended, and they were talking again and I said, Did you see that, guys? I stopped it. I got it just in time, did you see that? Good job, Sophie, I said, we didn't need that one. Oliver put his food down and rotated his eyes upward and around and said, That was A-MAAAAZING, MOM. You're a miracle maker, and then I giggled and rolled my eyes.

Blade Running

I'm not much of an Olympic-watcher and tend toward the cynical -- too much money, too many drugs and performance-enhancing shit, too many goofy commercials and corporate sponsorship, too many professionals playing as amateurs, etc. -- but the story of the South African runner Oscar Pistorius gave me that stand-up-hair-on-your-arms chill and thrill. Despite those who cried foul on his disability giving him an advantage, I felt thrilled by his efforts, by the sheer skill and fortitude, speed and strength he gave to become an Olympian.

I think that those shiny bladed legs carried all persons with disabilities forward a bit more -- and those of us who walk alongside them some heart and hope and continued courage to persevere.

Watch this video and tell me whether you agree or not:

HERE.

Eyes Open Wide

Or imagine a society committed to providing access to health and wellbeing for everyone, rich and poor, rather than playing childish semantic games about “death panels” and “socialism.” The cost of calls to my insurance company to get permission to see an NHS doctor who didn’t charge me a penny will be six times what I paid for the medicine that cured my infection.

But that, I suppose, is the cost of living in a free country.

--Steve Silberman, investigative reporter for Wired Magazine

Read the rest of the article HERE.

Sophie in the morning

The boys are home in Los Angeles!

Summer Apples

Backyard apple tree, Los Angeles 2012

Poem (at night Chinamen jump)

At night Chinamen jump   

on Asia with a thump

while in our willful way   

we, in secret, play

affectionate games and bruise   

our knees like China’s shoes.

The birds push apples through   

grass the moon turns blue,

these apples roll beneath   

our buttocks like a heath

full of Chinese thrushes   

flushed from China’s bushes.

As we love at night   

birds sing out of sight,

Chinese rhythms beat   

through us in our heat,

the apples and the birds   

move us like soft words,

we couple in the grace   

of that mysterious race.

-- Frank O'Hara

Four of these things belong together,

four of these things are kinda the same,

Can you tell which thing is not like the others?
Now it's time to play our game.
Time to play our game.

Expressing Motherhood

I submitted a piece to Expressing Motherhood, a national play "consisting of people who write their own stories about motherhood and share them on stage," and it was accepted! I did this nearly five years ago when the group first started and am so honored to do it again! I hope that any of you who live in the southern California area will come to one of the performances in late September and early October. It's a great show -- lots of smart and funny entertainment -- maybe we can all go out afterward!

Communicamp - Year Two

Sophie is attending Communicamp for the next two weeks -- I wrote about it  HERE when she attended last year and stumbled upon this link to that post only today! I hope you'll read a bit about this marvelous place and the kids that inspire all of us.

In the meantime, I attended today and captured a bit on film and video:

I'm not sure if the video will work or not, so let me know.

Side-show

Even my mother has suggested that I write a children's book  -- you know, something to take my mind off what I usually write about. I can't tell you why I write what I do write, other than that I'm here to tell a story and right now, it's my story to tell. I have an email subscription to Medscape, the godawful site that sends pertinent medical information my way. Whenever something in the neurology field, or more specifically epilepsy field, pops up on Medscape, I get a notice in my inbox. Last night I got this:

Here are the newly published articles in your area(s) of interest for July 31, 2012: Epilepsy Seizure Freedom: How Many Antiepileptic Drugs to Try? Medscape Neurology   ADD MORE TOPICS »

This cracked me up -- literally made me laugh out loud. I immediately envisioned myself, sitting at the breakfast table with my cup of coffee, musing on how many antiepileptic drugs to try. I imagined a street game of sorts, maybe even darts, a jocular list of dos and don'ts, pros and cons. There would be a carnival barker, someone to call the shots -- will she try one more? 


How many epileptic drugs to try?

I might as well be a snake wrangler at a side-show. Humor me, Reader. I might just be going insane.