Vigilante on an adaptive tricycle

Just another Sunday afternoon in the 'hood.

Perfectly blue

Cheviot Hills, Los Angeles

and a perfect poem:

You Fit Into Me


you fit into me
like a hook into an eye


a fish hook
an open eye


Margaret Atwood

(thanks D for sending me this poem)

After the rain

photographer: Robert Doisneau

It's a spectacularly beautiful day here in Los Angeles, even as most days are pretty spectacular. It rained off and on yesterday, sometimes it poured and when lightning struck and thunder roared, the people in the cafe where I was eating lunch collectively gasped (or at least I imagined so) at the rarity. I've let the dog out in the backyard and stood on the top step, listening to birds and sipping coffee. The air is stripped clean and the sky is blue and cloudless. The sweet-pea bush is heavy with the weight of yesterday's water and many flowers, and the roses, both pink and white have begun to bloom, again. Baseball games have been cancelled due to flooding, and both boys are asleep. Sophie is sitting up in bed, humming, a bird, a sweet-pea, a rose.









***The great French photographer, Robert Doisneau, would have been 100 years old on Monday.He's being honored by Google, and this photo struck me this morning like the lightning bolt yesterday.

Life is a loaded gun

Start fanning yourself.

How to change the world

Masked Woman in a Wheelchair - Diane Arbus

Remember that talking with a disabled person is not an heroic act. There is absolutely nothing required in the way of superhuman patience to communicate with a person with a disability, and stopping to listen to someone with atypical communication, far from being a charitable act, is an act of bringing a fellow human being into human community. Social inclusion and interaction, when someone desires them, are basic human rights that no disabled person should have to request, and that no able-bodied person with an ounce of ethical understanding should refuse.


Rachel Cohen-Rottenberg, via NeuroTribes

How We Do It: Part X of a Series

Sophie had a seizure as Oliver, she and I sat eating barbecue ribs and woody asparagus with bread-crumbs. It wasn't so much a big seizure, the kind that go on and on that necessitate serious action. She jerked, violently, and her sippee cup flew out of her hand, bounced on the floor and rolled, hard, under the half-moon of the cabinet. Oliver and I were discussing our lives, how difficult things can be. I had asked him how he copes, how he feels about living with the stress of Sophie and her seizures. I don't know. I just know that my friends couldn't ever do it. They'd cry all the time. I asked like who? and he named three or four of his closest buddies. He said, I mean they sit and have breakfast and dinner and don't have to deal with interruptions like seizures. They have a nice breakfast. I nodded, gave Sophie a bite and chewed my own food. Oliver got up and spit out a wad of asparagus into the garbage can, and when he sat down, I told him that while his life was indeed difficult, and I was sorry for that, there was always something going on in every family. I also told him that some people might have easier lives but some people might have more difficult ones. There's always someone who's got it worse, Oliver, I said. Like what? Oliver asked, and I said something about a girl like Sophie who possibly lived with her mother and brother in Iraq and had to endure bombs and all kind of mayhem in addition to the seizures. I cringed, though, reciting this, as it sounded like our family's version of Poor starving people in Africa might have killed for that woody piece of asparagus you just spit into the garbage can. Sophie had her seizure, then, exactly on cue. The cup flew under the half-moon of the cabinet and lodged on the back wall, a pool of juice and water just out of reach. Both Oliver and I went at it with a broom and then the broomstick. What about the last worst person? Oliver said, his voice muffled as he lay on his stomach on the floor with the broom, and I told him that I didn't know what he meant. What last person? I said. You know, he said, the last person who has it the worst, when there's no one else to have it worse. And he jabbed the cup a few times so that it rolled out of the moon and he picked it up and put it in front of Sophie, and then I told him that his question was one of the most amazing ones I'd ever heard but that I didn't have an answer.

Music as the "quickening art"**

You must watch this in a spare six minutes. For those of you who know the healing properties of music, this will confirm it. For those of you who might not know of its power, particularly on the elderly, the infirm and disabled this will open your eyes -- and ears -- and heart. Plus, there's some Oliver Sacks in there, too -- and if you're like me, anything that physician/philosopher does or says is worth paying attention to and hearing.



**The philosopher Kant said this.

I want to unfold

Sophie and I, 1995

I want to unfold

I don't want to stay folded

anywhere, because where I am folded,

there I am a lie.

And I want my grasp of things

true before you. I want to 

describe myself

like a painting that I

looked at closely for a

long time, like a saying that

I finally understood,

like the pitcher I use every day,

like the face of my mother,

like a ship

that took me safely through

the wildest storm of all.

Rainer Maria Rilke

Things that make me laugh

This:



and this:

click here

Things I Hate

a not so flattering portrait for a not so flattering post

I have a friend who laughs and mimics me every time I say, You should know this about me. I hate (blank). When he was two years old, my son Oliver used to say I hate everybody just to get a rise out of all of us. Another husband of mine used to tell me the story of his paternal grandmother who admonished him to hate no one but the Devil. I'm hesitant around hyperbole, but I hate placidity. And with all this gratitude stuff going around, I'm going to be contrary -- shake things up a bit. I'd love to hear what you hate, and if it's me, feel free to say so.


So here goes, a list of things I hate:

1. BMW drivers (at least in Los Angeles): they are, as a rule, arrogant, particularly adept at weaving in and out of traffic aggressively and obnoxiously, honk early when lights turn green and roar past normal drivers like myself. Reader, if you drive one, you might be the exception to the rule that even my sons, avid lovers of cars, have grudgingly admitted is absolutely correct.
2. when my sons take their pants and underpants off together and throw them, attached, in the laundry basket, inside-out
3. milkshakes, except coffee
4. seeing the words its and it's mixed up, or there and their
5. hard-core moralistic evangelicals of any religion
6. when Sophie has a seizure in the bathtub, and it takes two people to protect and lift her naked, jerking body out of the tub
7. seizures, in general and in particular
8. the expression anyhoo
9. gross-out movies, like Bridesmaids and There's Something About Mary
10. the financial success of movies like the above
11. that I keep entering Pioneer Woman's giveaways (recently, a lime-colored Kitchen-Aid mixer) and never winning. I don't mind that I don't win (there are about a million people who don't after all!), but I hate that I keep entering them with hope that I might. It seems pathetic.
12. patriotic expressions like "the ultimate sacrifice" and other immoderate comments about warfare and soldiers
13. health insurance companies
14. slick, renovated kitchens for people who don't cook
15. slick, renovated kitchens in general
16. the tyranny of exercise
17. designer handbags and any clothes with logos, particularly those for children
18. the whole frenetic what private school is my kid going to get into? time of year of the luxury classes
19. giant cars and the people that think in America, they can drive whatever the hell they want
20. the phrase take back America
21. Pediatric doctors and nurses who refer to the mother as mom, as in Mom says Little Joey isn't feeling too well today.

While I'm on the phone,

read this:

The ability to be faithful in a religious space and reasonable in a political one has atrophied before our eyes.


from the article by Andrew Sullivan, Christianity in Crisis. I promise there's something there for everyone and like nearly everything Sullivan writes, it's brilliant.


Let me know what you think.

I'm on the phone

all day, doing federal grant reviews.

We'll talk later!

Rhymes

Santa Monica, November 2007

All human beings

should try to

learn before

they die what

they are running

from, and to, and why.

James Thurber

All that is gold does not glitter,

Not all those who wander are lost;

The old that is strong does not wither,

Deep roots are not reached by the frost.

J.R.R. Tolkien

Kids, Soldiers and Drugs

Boys in the trenches, World War I

I have a lot of friends whose kids are on psychotropic drugs. These are seemingly normal children, not those with special needs, and their problems range from attention deficit disorder and ADHD to depression and more serious issues of mental health. I'm in no position to judge this, cognizant of the fact that nearly all of those friends are wonderful, careful parents doing what they believe is best for their kids. But every time I read an article like the ones I've linked to below, I wonder. What, exactly, is going on that so many kids are being drugged at ever younger ages? Is this necessary? Is this a cultural shift? Is this a new "normal?" Is this going to backfire eventually? Is this a result of the pharmaceutical/industrial complex? Is it all about money? Are these kids at an advantage or have we created a monster?

I come at this predicament from a very biased position, of course -- while both my boys are free, blessedly, of any kind of drug, my daughter has endured an arsenal of them, and I can honestly say that nearly all the twenty or so that she's been on in seventeen years have been of no use to her whatsoever. In fact, they've probably done more harm than good. We are not an exception to this rule; 30% of people with epilepsy do not have control with multiple drug trials. Yes, 30%. I've grown extremely, if not irrationally, opposed to the seemingly careless way drugs are prescribed to children with refractory epilepsy (epilepsy is considered refractory when you've had a trial of at least two drugs and seizures are not controlled) -- I hear of young children on three and sometimes four combinations of AEDs all the time, still, in 2012 --  and I'm starting to get really creeped out by the numbers of "normal" kids being prescribed psychotropic ones as well.

I remember one neurologist years ago telling me that taking anti-epileptics was like peeling back the scalp and tissue underneath and pouring medicine over the entire brain -- a neuro-bath, I believe he described it back in the ancient 1990s. That meant the entire brain was affected by the drugs, and I do remember looking at the insert (that lovely piece of paper written in infinitesimal writing listing side effects ranging from irritability and bruising to constant laughter and death) and feeling like I was drowning in terror. I have never gotten used to giving her this shit. Never. I suppose I would have should her seizures ever have been controlled. I might have even been grateful. But even now, the drugs that Sophie takes are so new no one really knows what the hell they're doing to her, beyond the dizziness, headache, stomach cramping and tiny bit of seizure control. Years ago, when I first began exploring alternative treatments for Sophie, I asked her neurologist at the time whether it was all right to give her Chinese herbal teas that I'd gotten from a very trusted Chinese doctor. I don't see why not, the neurologist said in her clipped British accent, They couldn't be any worse for her than the stuff we've been cramming down her throat for the last decade. Poor little chip.


Evidently, more than 100,000 American soldiers are currently on psychotropic drugs. Yes, that's right. More than 100,000 of them, for issues like attention, depression, psychosis, etc. I suppose the justification is the constant stress and terror many of them have endured during more than a decade of war in Iraq and Afghanistan. We're asked, all the time, to honor our troops, to admire them for their bravery, their sacrifices in ensuring our freedoms. It makes me sick that the powers that be are loading them up with drugs so that they can do their job. And some of these soldiers have had alarming behavioral side effects -- outbursts of extreme aggression, psychosis, suicide. Have we replaced the shell shock of old in an attempt to "help?"

The image of the brain, bathed in chemicals, comes to mind.

I hope some of the brightest and best minds are trying to figure this out -- outside of commerce. My biased gut that feels like I'm poisoning my daughter every time I give her doses of Vimpat and Onfi tells me that something is just not right about any of it.

Articles referenced: Growing Up Drugged by Caitlin Bell Barnett, Salon
                               A Fog of Drugs and War by Kim Murphy, Los Angeles Times