Weekend

I know there's a metaphor somewhere in that photo of a little knothole in the Ventura Pier that I took last weekend, but I just haven't been able to think of one. Let me know if you have any ideas.

I'm getting ready to drive down to Orange County with the boys. Henry has a lacrosse tournament over the weekend, so I'll be -- what is it called? -- stateside, with my book, some knitting and my best pretend sports-Mom look. I'll keep you posted.

I know I have a lot of readers who are writers, and I wanted to tell you about a very cool opportunity you have to contribute to a wonderful cause and get a languishing manuscript read and critiqued by a famous writer. My alma mater, Caregifted (the organization founded by the MacArthur Genius grant winner, poet Heather McHugh) that sent me the amazing one-week, all-expenses paid trip to Victoria in June of 2013, will benefit from all the proceeds of this fabulous event/opportunity. Seriously, ya'll. Some of the writers donating their time to read YOUR manuscript are

Rae Armantrout, Mary Jo Bang, Robin Black, Matt Bell, Janet Burroway, Ron Carlson, Alexander Chee, Billy Collins, Nicholas Delbanco, Mark Doty, Cornelius Eady, Therese A. Fowler, Daisy Fried, Linda Gregerson, Mark Halliday, Matthea Harvey, Tony Hoagland, Major Jackson, Ben Lerner, Philip Levine, Thomas Lux, Rebecca Makkai, Michael Martone, Elizabeth McCracken, Joyelle McSweeney, Eileen Myles, Lucia Perillo, Joanna Rakoff, Roger Rosenblatt, Natalie Serber, Brenda Shaughnessy, Rebecca Wells, Joe Wenderoth, Hilma Wolitzer, Laura van den Berg, Dean Young, and Matthew Zapruder.

You can read more about it here.

Reader, what are your weekend plans? Do you have a metaphor for my photo of the greeny sea through knotty pine?

Raging Against the Machine in Little Tokyo with Howard Zinn's American Voices

The evening began in Little Tokyo, downtown, where Oliver and I went and slurped noodles. He had some sort of beef bowl, and I had seared tuna with a spicy wasabi dressing. Afterward, we walked over to the Aratani Theater, a small but classy joint where I've seen Toni Morrison and other literati. Some of you might remember that as part of our homeschool curriculum, Oliver and I are making our way through the young people's version of the great radical Howard Zinn's controversial People's History.  In a nutshell, Zinn writes American history from the point of view of the exploited as opposed to the "great" leaders, statesmen and warriors. The book has been suppressed over the years, bemoaned by the religious and patriotic right, but Oliver and I are finding it compelling reading, as well as overwhelming and sobering. Tonight's show had actors reading original texts of some of these people in American history -- familiar names like Sojourner Truth and Harriet Tubman, Malcolm X and Naomi Klein, and then ones less so like poet Marge Piercy, union activists and labor leaders.

An 1880 speech by the women's suffragette and populist Mary Elizabeth Lease who cried out against the excesses of Wall Street was weirdly prescient and brought down the house. The folk musician Joe Henry sang a Bob Dylan tune, and Tom Morello of Rage Against the Machine sang Springsteen's Ghost of Tom Joad. Can I just tell you that while I recognized the name Rage Against the Machine, I didn't know Tom Morello from Mr. Morell, my eighth grade English teacher? Ya'll, I'm a believer after hearing this guy's voice and guitar-playing and just overall -- well -- passion. I might have even jumped up and down at the end during a rousing rendition of This Land is My Land when he told us to do so.

Oliver, who earlier expressed his reluctance to sit through all of these performances was completely jacked up when John Kresinski of The Office walked onstage, and don't tell him I told you, but I think he was smitten by Kerry Washington. Aside from feeling energized by the wisdom and spirit of these voices of our distant and near past, I left, too, feeling sober and not a little depressed at how little has changed, how we seem to be moving backward, again, in this country, involved in endless wars, rallying to deport and demonize the immigrants who do the bulk of work, taking away women's reproductive freedom, shooting men of color or throwing them in jail and allowing those who brought the country to its economic knees to walk free, their pockets newly padded, buying elections and driving an ever greater wedge between those who have and those who have not. For a few glorious hours tonight, though, I looked around and saw people of every age, shape and color, and the sight of my boy's smiling face and shining eyes made me feel a tiny bit hopeful.

After-School Conversations

I caught Sophie lying like this and listening to Eva Cassidy singing Imagine.  Still life with cup and purple ball.

Imagine all the people living life in peace

I caught these guys in their version of conversation, responding to my own shout from the living room. Here's how it went:

ME:

HENRY! What's the deal with you leaving your socks in the living room at night when you take them off? THERE ARE AT LEAST THREE PAIRS LYING ON THE FLOOR AND YOU NEED TO CUT THAT OUT!

HENRY:

Oh, yeah. Ha ha ha ha ha. Ok, MOM! 

OLIVER (interrupting):

Yeah, Henry, you're such a pig! You leave your boxers in the bathroom every morning after your shower. I like to pee on them!

SOUNDS OF PROTEST AND MUFFLED SCREAMS

ME:

YOU GUYS! PLEASE! ENOUGH!

OLIVER:

HE'S KILLING ME! HE'S KILLING ME!

HENRY:

You can't just pee on my clothes! You can't even say that you did!

ME:

YOU GUYS! PLEASE! ENOUGH!






Five minutes later.

HENRY AND OLIVER:

See you later, Mom. We're riding our bikes up to the video store.

Landing on Comets

Today I learned that a space craft has landed on a comet for the first time. That's a photo of the event. Meanwhile back on earth, we got a sort of explanation, possibly, for Sophie's "drop foot" or increasingly strange gait pattern. Yesterday was the Quarterly Trip to the Neurologist, and despite Sophie's recent digestion troubles, she was in fine form, alert, smiling, seizure-free and fairly animated. The Neurologist was delighted and suggested that the prolonged use of the particular anti-epileptics have probably, over time, caused the problems. She informed me that both Vimpat and Onfi are troublesome, and she really, really wants us to continue to wean the Onfi. This can only spell improved efficacy with the cannabis, as most reports indicate those off of benzos in particular see the best results. She was delighted as well that the cannabis was helping her so much, remarked on how good she looked and agreed that more testing -- an EEG -- wasn't necessary. We made a plan to begin another wean this week and will keep it at that level for a month before moving to the next. I have written out on a piece of paper four months worth of weans (1 teensy tinesy bit, hopefully, a month) which is a start but not complete. The Neurologist told the grim story of one of her patients who got into too much trouble at the end and continues to take a tiny bit. She suggested that this might be the case for Sophie, too, given how long she's been on the drug and how much she's taken. Lovely. Maybe I'll get a chance to ride a comet in celebration of The Removal of the Benzo. The Neurologist also threw some alarming fact about bone marrow and one of the drugs into the conversation which I filed away to mull over later. Lovelier. I told her about the weird stepping motion Sophie makes and how I'd wondered whether she had Parkinson's or Multiple Sclerosis, two of the diseases that I saw on the internets that correlated with drop foot. I asked her this question in my best casual, yet rueful and ironic way (because -- really -- I wouldn't be entirely surprised to learn of some new catastrophe and when your child is nonverbal, who the hell knows ever what's going on? That spacecraft that landed on the Comet is called Rosetta, which makes me think of those language programs which then makes me think of how we can't figure out what someone like Sophie is thinking or feeling and wouldn't that be wonderful if there could be a Rosetta for the nonverbal?

Anyhoo.

The Neurologist, after observing Sophie walk believes it to be just plain old weakness, exacerbated by her constant crossing legs and a possible injury around the knee. She wrote me a prescription for physical therapy, so next on the agenda is perhaps a fracas with the insurance company over whether this is absolutely medically necessary (can't she just use the wheelchair? I imagine the agent asking over the telephone). Before I do that, though, I'll take her to the private physical therapist for a little assessment that will cost me about three trillion dollars and get some advice from her on where to go In the Healthnet Network for regular physical therapy. Remember you conservative and anti-Affordable Care Act freaks and repealers: You don't want no government coming between you and your doctor!

Anyhoo.


All in all, it was a good visit to the place of CONQUEST (see my post about irony, written years ago) -- surely not as spectacular as a spacecraft landing on a comet, but who am I to think our little problemos have a speck of significance in this grand universe?

The Pee Pocket and Its Relevance to My Blog and An Exit Off The 405

Not a day goes by that I don't get some kind of marketing query from some misguided person or company who thinks my blog is somehow influential enough to warrant me posting about the object or invention or service they have to sell. I'm not influential enough, apparently, to convince neurologists to stop prevaricating about the effect of cannabis on refractory epilepsy, but damn if this might be the place to make THE PEE POCKET  best-seller. In the query email, I was told that THE PEE POCKET is geared toward athletes, travelers, the elderly, parents of young girls, pregnancy and -- oh, yeah, here's why they found me in the search engine -- the disabled.

Here's a picture of THE PEE POCKET:

You can use it while you're standing up ya'll! Seriously, if this product excites you, go on over to the site and learn more.  I was almost tempted to show it to The Brothers before I came to my senses, but it did make me remember all the times I drove back and forth from Los Angeles to San Diego with Baby Sophie in the back of a rental car to visit the osteopath. That was in the waning days of the last millenium when I lived in New York City but did these six-week stays in southern California by myself with the baby -- sometimes in a motel, sometimes with friends or relatives. I actually drove the highways by myself with Sophie in the back seat, at night! We had no phones, then, ya'll! No GPS! Sophie was a sickly thing back then and even when a toddler couldn't walk or do much of anything. She was so drugged up and irritable that she also never slept (neither did I), even in the car (neither did I). When I had to go to the bathroom, I had to carry her in with me, and one time I had an overwhelming urge to pee and pulled off the highway on some dark, godforsaken exit where I quickly realized that I wouldn't make it to the bathroom by the time I unbuckled the sleeping (finally!) child from the carseat, made my way to the bathroom, unzipped my own fly, pulled down my jeans -- well, you know the drill -- not to mention the pitch dark, the flickering flourescents, the whole south LA scene at a dark highway exit. How I could have used THE PEE POCKET in that moment! Instead, I grabbed Sophie's bottle, dumped out the contents, which was probably the nasty, thick ketogenic formula we were trying at the time, and proceeded to pee right inside of it. I'm not going to tell you how it all turned out, because this is not that kind of blog. Suffice it to say that I tossed it out the window into a metal garbage can and scratched off in my Focus and back onto The 405.

Whew. Like I said the other day, Cast my memory back there, Lord. Sometimes I'm overcome.

Cannabis Update Number 3,876,342 with a Profanity Warning

If you haven't noticed, I've retreated from the frenzy that is the medical marijuana/cannabis/hemp world. I told you a few weeks ago that I gave up my advocacy "position" due to exhaustion, burn-out and some other personal things. Sophie continues to take Charlotte's Web three times a day, and we still wait for the higher ratio oil that gave her the best seizure freedom. While not seizure-free, she is dramatically better than she was a little over a year ago, and as soon as her intestinal situation is completely stable, we plan on continuing the drug wean. Meanwhile, thanks to those who are not exhausted and burnt out, the fight for access to cannabis oil rages on. I watched the video below with great interest as several of my friends appear in it, but every time a physician came on, no matter how respected, my heart sunk. The arguments against this oil are, to me, bullshit, through and through, and it makes me almost sick to my stomach to hear them.

Ironically, the longer I live in this world of refractory epilepsy, the more seizures I've seen, the more drugs I've given Sophie and the more I observe their side effects and utter inefficacy, the more suspicious I become of the pronouncements of these estimable doctors, their condescension and obduracy regarding cannabis. I don't believe cannabis is a miracle. I don't believe it's a cure or know enough about it to call it a cure, but to argue against these children having the chance to try it, is unethical. Just the other day, a reader sent me an email expressing her desire to try cannabis for her nineteen year old son who is currently on four anti-epileptic drugs and still seizing hundreds of times a day. She told me that she didn't want her son to get high, and she told me that her neurologist did not approve of her trying the oil until more evidence came in. Her neurologist told her wrong information, and her neurologist works at Emory University. I'd say, good Lord! or even Holy Shit!, except that it so doesn't surprise me.

I don't mean to attack the medical world in its entirety. Obviously many truly do hold to heart the tenets of their profession and are beautiful professional healers. Plenty of doctors, including Sophie's, are incredibly sensitive and supportive. Many, too, are open-minded and curious. The rest of them? Well, let's just say that at my vantage point -- earned in twenty years -- I've learned to quite defiantly raise my eyebrows at best, and at worst, think: f**k 'em (another reason why it's probably best that I advocate here on my personal blog and not march into and out of political offices or worse, neurology departments, to beg for their mercy). I imagine that I'm a bit of a pariah in the World of Diplomatic Neurology. Again, at this point -- twenty years in -- I actually don't give a damn. I know that's a difficult stance to take on when you're new to this horrific game, and I can't actually advise people to do the same, but I can state, quite firmly the following things:

* If your child has refractory epilepsy, you have nothing to lose in trying cannabis oil.
* If your child is on multiple drugs and still seizing, the drugs are not working. It's not the moon, an impending virus, the fake candle fumes, your relationship with your spouse or family dynamics. When drugs work, seizures stop.
* If your child is on multiple drugs and still seizing, and your neurologist tells you to add another one, that's unethical. In twenty years, I have never met a single child with refractory epilepsy whose parents have found a magic pill to control his or her seizures for the long term without side effects.
*I have met many children who have tried upwards of twenty drugs with no success whose parents then back off so many drugs, accept the increased seizures and better quality of life, try cannabis and see its positive effects.
* That is our experience (above), and it's a travesty that just because I live in California where the product is available and legal, we get the relief.


Whew. I got that off my chest.



I can't seem to embed the video/documentary attached to this very informative article in TIME, but here's the link:

Pot Kids

The Universe is Abundant

Ventura

I want to stand as close to the edge 

as I can without going over. 

Out on the edge you 

see all kinds of things you can't see from the center.

Kurt Vonnegut

How We Do It, Part L

Foggy Sunday Morning in Los Angeles
November 2014

I don't mourn things much anymore. The what ifs, the might haves, even the should haves. Last night, I changed Sophie, put her pajamas on, helped her to lie down in bed. I lit a candle to mask the smell. I turned off the overhead light and switched on the lamp, put a CD of world lullabies in the player and walked out of the room. I changed into a black shirt and a lacy jacket, my jeans warm from the dryer. I buckled the straps of my heels, brushed my hair, put on some red lipstick and a bit of perfume. I walked back into Sophie's room and blew out the candle, turned out the light and knelt on the bed, wiped the hair off her face and whispered, Good night. She pushed herself to sitting and lay back down, and it was then I felt the knife. She has never gone out at night, I thought, and what if she knows what she's missed? Don't tell me to give it a try. Don't tell me she lives a good life. Instead of twisting the knife, you can pull it out, wield it like a pen, type the keys to survival.

The Chronicles of Ape and Iris

Grandma Ida Mae and Grandfather Charles Haddad
Brooklyn

Iris and Ape, Ape and Iris. They'd been arguing all morning. You're killing my soul, Ape said, even as he methodically folded the empty cardboard box that the computer had come in. He tried to lift it by himself, crouched bare-chested, stood up with a grunt, sweat beading on his forehead, glasses slipping down his nose, and walked away toward his office. The room, despite its size, was unbearably hot. There'd been no rain for months, the sun hung in the sky every damn day, a pale, inexorable disc. Iris needed air. She pushed on the window at the back that they never opened. They lived in a rough neighborhood. She had large hands, strong hands, that kneaded dough, were nimble. She'd scored high on a career test back in high school for finger dexterity. The window was stuck, either painted shut or swollen from water and shrunken from sun too many times. She banged on the wood a few times, used the base of her palms to shove upward, felt it give and then the whole thing came down, the glass punched out, shards of it slicing into her palm, the joint of her middle finger dark with blood. Later, a thin white scar marked the crease of that finger and the inside fold of her wrist, but that day she stood with her palms upward, surprised at the blood, the glint of the glass, her brute strength.

Marking Days

The afternoon sun that falls into my bedroom so early in the late afternoon is delicious. I lie on the bed, done with the day of teaching and driving and laundry and cooking and feeding and changing diapers and thinking, and watch the motes of dust suspended in the beams of light. I've been listening to a lot of Pema Chodron these days, mainly on the highway after my early morning drop-off at Henry's school. Do you mark off your days, at least the significant ones, by the books you've read, the music you've listened to, the movies you've seen, the way the sun comes in just so at 3:50 on a November afternoon? In my own distant past, there is La Wally, sung by a diva in Diva . Further back there's holding the hand of a boyfriend in the school chapel while the lights dim and The Grapes of Wrath comes up on the screen. There are Charlie Smith's novels and John Dos Passos, certain passages marked in tiny script. There's Van Morrison's Purple Heather in an apartment in Druid Hills, and Chet Baker whisper-singing in a dingy apartment, an unmade bed, my back cold on the shower tile, depleted by love, the hum of the electric fan over the stove as he smoked. Sometimes I'm overcome. There's Pema Chodron, now, and Patty Griffin's full throat.

Cast my memory back there, Lord. Sometimes I'm overcome.

Van Morrison

Darwinian Twitter Talk

Someone told me the other day that Oliver appeared on Twitter, dressed in his Halloween costume of Jake from State Farm. I think I set up a Twitter account a while back, but I haven't ever twittered, and today as I traversed the highways and byways of this great and insane city, Twitter-like thoughts were really the only thoughts that I had. Other than those thoughts, I spent a bit of time shedding tears, but I can't really tell you about all of that, so here's the diversion. Twitter thoughts. You know the kind, I think. Sentences or groups of words that are less than 140 characters. Is that right?

Anyhoo.

That's Darwin up there, and his wise old lined face and weird pancake index finger, his shushing motion, gives me comfort.

I gaze at him in response to the agita I feel reading about the new Repubs in town, and the old Repubs with new power.

Shhhhhhhhhhhhhhhhh.

Evidently, the estimable Republican senator from Oklahoma, Jim Inhofe, uses verses from the Old Testament to deny climate change as a human problem. He is poised to become the head of the United States Senate Committee on Environment and Public Works.

Here's what he told a group of Christian youth:

“[T]he Genesis 8:22 that I use in there is that ‘as long as the earth remains there will be seed time and harvest, cold and heat, winter and summer, day and night.’ My point is, God’s still up there. The arrogance of people to think that we, human beings, would be able to change what He is doing in the climate is to me outrageous.”

I think that was too long for a proper Twitter, but it gives me the shivers.

Holy shit.

Let go and let God, at best.

I wish Darwin would appear to Inhofe in a dream with his finger against his lips like the photo. I imagine Inhofe would think it was God Himself and perhaps shut up.

I don't even feel bullied into voting anymore by those who rattle on about who died or was chained to give us the privilege to vote. I vote, but purely on principle.

I don't believe that my vote counts for a bean, to tell you the truth. Or yours.

I vote so I can visit the Korean church down the street or the Lawrence of La Brea Morroccan rug store.

Kids in Florida with epilepsy won't be able to legally try cannabis to stop their seizures, but their older brothers and fathers can stand their ground and protect themselves with assault rifles if they feel threatened.

Shhhhhhhhhhhh.

Evidently a few red states whose residents have benefitted the most from the Affordable Care Act, insured for the first time, voted for conservative governors who want to repeal the reforms.

I think that was too long for a proper Twitter, but it gives me the shivers.

I try not to think some people are stupid, but I'm going to go out on a limb and say it.

Some people are stupid.

That Inhofe keeps his smarts in a leaky bucket, someone said today.

Twitter, twitter, twitter, twitter, twitter, twitter.

Shhhhhhhhhhhhh.

Political Colors

Los Angeles, after rain

All I'm going to say today is that I'm so grateful to live under these blue skies and not in the sea of red that appears to cover much of the rest of this country.

A Tar Heel Fairytale

I told the boys today that Coach K from Duke had criticized President Obama's ISIS policy, comparing the President to a bad coach. They yelled out epithets and dire predictions for his demise to which I said, That's not nice, guys. You shouldn't ever wish that on anyone! To that, Henry yelled, You brainwashed us! I'm a TarHeel! And I felt very, very proud to have somehow had some sort of impact on these hellions.

The end.