Head Swimming with Wants

We're getting rain here in Los Angeles -- buckets and buckets of rain -- and the most beautiful winter sunsets. That picture above was taken on Saturday in Santa Monica. Carl and I were on the beach, and that's facing east, away from the ocean.

Turn around.

Today marked the first day of the second week of my new job teaching English to a group of eleventh and twelfth grade girls. I have three classes, two groups of eleventh graders and one group of twelfth. Each class is unique and one is particularly challenging. Anger and resistance make the air crackle in that room. Heads swim with wants. Take notes, I think. Keep taking notes. I have a mind and a memory like a steel trap, and these girls will join all the other hostages that wander the labyrinthine paths.

I get this newsletter every day from The New York Times newspaper cooking section. It's called What to Cook Right Now. I love it so much -- the recipes, the commentary, the links. Today I learned that it's the writer John Dos Passos' birthday (1896). I read nearly everything he wrote back in the last century, in my early twenties. I probably read him lying on a bed somewhere, maybe in the apartment where I lived with my first love, out in the country in Chapel Hill, a mattress on the floor at the top of the stairs, sandwiched between two walls and a window at the foot, a bookcase stuffed with used paperbacks. I might have been chewing on some Twizzlers when I read Dos Passos, red plastic mingling with brown must. Dos Passos was a hostage, though, wandering around my mind, lost down some dark corridor, until I read about him today.

Teaching these girls, doing the research for lesson plans, revisiting stories and poetry -- it's all packed in there, in my mind, and it seems that there's no end to what one can stuff into it. So, yeah. Take notes, I think. Keep taking notes.

Here's a passage from The 42nd Parallel that Sam Sifton, the guy from the NY Times newsletter thinks describes the writer's life. I agree.


The young man walks by himself, fast but not fast enough, far but not far enough (faces slide out of sight, talk trails into tattered scraps, footsteps tap fainter in alleys); he must catch the last subway, the streetcar, the bus, run up the gangplanks of all the steamboats, register at all the hotels, work in the cities, answer the want ads, learn the trades, take up the jobs, live in all the boarding houses, sleep in all the beds. One bed is not enough, one job is not enough, one life is not enough. At night, head swimming with wants, he walks by himself alone.

My Response to The NY Times Epilepsy Story

So many people sent me the recent — let’s call it crowd-sourcing — article detailing a young girl’s hideous epilepsy story and asking for the public’s help, that I’ve lost count. That we live in a period where literally everything is a reality show makes me ill. Crowd-sourcing medicine? Give me a break. This is my response to the parents via the New York Times and the f’d-up medical business community that pretends to Science:

Don’t cut out your child’s brain until you’ve tried cannabis medicine. “Fixing” your child is the hardest, most fruitless journey you will embark upon. The opposite of that is not acceptance. There is healing in the legion of people who know your suffering. Healing and curing are entirely different things.

PSA for These Difficult Times

Letting my snaggle tooth hang out

You're exactly where you're supposed to be this moment. I tend to project all my fear out into the future, but you know what? It's my present that's terrifying at times, and I have to tell myself that I'm exactly where I'm supposed to be this moment, over and over and over. Sometimes cliches are necessary.

Here's the PSA part of this post:

Do you listen to The Daily? It's a daily podcast that digs deep into a pertinent issue for twenty minutes, five days a week. The New York Times does it, so I suppose some of you out there reading will say it's fake news or liberal biased media or whatever lazy cliches are being thrown about. I say lazy because we're all subject to lazy, particularly intellectual laziness, and these times call for us to gird our loins and pay attention and read quality journalism and listen to careful, investigative work. I think The Daily does important reporting, and from what I've listened to for many months, it appears to cover sides of an issue when that's pertinent but also THE FACTS as they appear to our eyes and ears.

Truth is always truth, contrary to what you might have heard out of the Powers That Be's very own mouths.

Today's podcast was Part One of a two-part series called Divided: How Family Separations Started, 

and it'll blow your mind and break your heart.

Recently, I wrote a post detailing my happiness at Sophie finally starting her new adult day program. One of my Anonymous commenters wrote this:

What, you are happy with a great program for Sophie. That is wonderful. But what about all the children separated from their parents at the border?

I replied:

Anonymous, what do you mean? Have I forgotten that our government kidnapped thousands of children and put them in internment camps. Never. Doing what I can — do you need info or resources on how you can help them?

I suspect that this is the same Anonymous who spent a lot of time on an earlier post of mine defending the separation policy, so I'm hoping that she listens to the podcast. I wonder, too, whether her feelings about the great tragedy on our borders have evolved at all. The reason why I'm wondering is because I think it's going to take as many people as possible to exact justice. Yesterday, the POSPOTUS himself blessed and spoke warmly to those who work for ICE and for their actions at the border. 

So what can we do about the clusterfuck beyond educating ourselves? The obvious solutions are to pressure your representatives to work toward reuniting these children with their families, to vote for those people who fight injustice, to donate money or even donate and subscribe to the ACLU, to protest whenever there are gatherings, to hold your government responsible, to speak the truth and refrain from arguing that there's any reason at all to separate any child from his or her parent because they are seeking asylum or a better life for their families and happen to have brown skin.

Here are some more ideas that I found on the Internets.

1. Become a child advocate.
2. Become a Court-Appointed Special Advocate (CASA) for young people in foster care or donate to your local CASA program
3. Donate to Comfort Case which gives backpacks of comfort items to kids in foster care
4. Volunteer to visit people in immigration detention.
5. Help transform your faith community or business into a sanctuary space.
6. If you happen to be a lawyer, paralegal or law student, a number of organizations are looking for pro bono volunteers.

Click HERE for more information and links to explore the above.

The Daily

#familiesbelongtogether

#resist

The Bookworm Thrills

The Bookworm, circa 1974 or 1975***

I've just been reading The New York Times Book Review, have downloaded several new books, added a couple to my Amazon wish list and spent several hours dipping into the old reviews of Gabriel Garcia Marquez' One Hundred Years of Solitude and a few of his other novels. That made me search for my old copy of the book, which I found and which I'm thinking I should re-read. Marquez loved Joyce and Woolf, and just the other day I was talking to an old and dearest friend, and he reminded me of Joyce's short stories, how amazing they are, how you can pick up anything of his and just dip in wherever, start reading, re-reading, whatever. I had told him that I couldn't get through the Pulitzer Prize-winning novel The Goldfinch, that it bored me and I wasn't sure why. I'm wondering if I can get through the Marquez, this late in the game or whether I should stick to shorter novels. I haven't read a biography in years, so I'm pretty sure that I'll be buying the hard copy of the new Updike one by Adam Begley. The review made it sound fantastic, and while I came late to the Rabbit books, I fell in love with Updike over the four summers I spent reading each of those books, culminating in my seeing him at UCLA right before he died. I can still remember my surprise at his warmth (I'd thought he'd be patrician and snooty), at how long and thin his fingers were, how I wanted to jump from my third row seat right into his lap. And then there's Barbara Ehrenreich's Living with a Wild God (that's the one I downloaded), described by the reviewer as electric, but then later as discursive, repetitive and claustrophobic, but Ehrenreich fascinates me, and so do people's lives and their mystical experiences so I'm going to read it. When I was a child, I'd walk into a library, move toward the children's section and have to kneel down, my foot wedged in my crotch, such was the urge to pee. This ridiculous side effect of book titillation carried on well into my adulthood when I still frequented bookstores, and even now, as I click and download and order, I feel the same sort of urgency and excitement at the prospect of so much to read, so many books. There's still time.






***Really, one can't exclaim enough over this perfect shot that my mother took one Christmas when I was ten or eleven years old. She always claimed that she'd practically shout at me such was my reverie when immersed in a book. I think she made that maxi dress for me, and I'm struck by my hair grown out and curled, evidently, with a curling iron. There would be several painful years of adolescence still to get through when the hairstyles got even more scary, and let's just say that being a bookworm was not a ticket to popularity and ease at a fancy private middle school in Atlanta, Georgia in the seventies. Oh, and let's not even talk about the couch fabric.

On Devinsky and Friedman's Opinion Piece in the New York Times About Medical Marijuana

I'm going to fly through this post with my initial reaction to the New York Times' recent opinion piece on medical marijuana, titled We Need Proof on Marijuana. That means it's what I think on the fly after reading it, in light of my own experience giving Charlotte's Web to my nineteen year old daughter for the last several months. And since I'm a very fast typist and perhaps an even faster thinker, I'm going to slow myself down and number these thoughts. Here we go:

1. First of all, Orrin Devinsky and Daniel Friedman are huge in the pediatric epilepsy world, and I know both of them. I haven't seen either in as many years as I've lived in Los Angeles, but they are excellent doctors and good people.
2. I'm immediately put off by the line drawing that accompanies the article -- a Cure All Magical Elixir -- and its implication that there's something fishy going on.
3. The rest of the piece is patent bullshit and makes me despair again over the vast and seemingly irreparable rift between the professional epilepsy world and the rest of us -- the caregivers of these kids with refractory seizures.
4. My daughter has been on twenty drugs in as many years and not a single one of them has done anything to control her seizures or heal her in any way. In fact, most of them have caused her harm: discomfort, pain, irritability, anorexia, systemic abnormalities, headaches, ataxia, more and different seizures, nausea and the risk of death. In the short term and over the long term. 
5. On Charlotte's Web Sophie is now having no seizures for weeks at a time. For the first time in her life. Unless Sophie has been faking multiple seizures a day for her entire life, this is no placebo.
6. If Sophie were to die, five years from now -- hell, TWO years from now or even several months from now -- because of the "long-term effects of medical marijuana," I would be grateful that she had those days or months or years free of seizures for the first time in her life and in the life of her two brothers who have watched her seize daily for their entire twelve and fifteen years. I am decidedly NOT grateful for the life that the so-called "studied medications" have allowed her to live.
7. Devinsky and Friedman state their concerns for the long term effects of medical marijuana on the child's brain. I understand their concerns, and I understand it's in their interest -- and the hundreds of thousands of children with epilepsy's interest -- to study this plant, but when they write this: Where is the data showing that marijuana is effective for epilepsy? Although parents may report improvements in their children, it is important to remember that the placebo response is powerful, and the placebo response is greater in pediatric than adult studies. Before more children are exposed to potential risks, before more desperate families uproot themselves and spend their life savings on unproven miracle marijuana cures, we need objective data from randomized placebo-controlled trials I feel the condescension that I have grown to expect dripping from their mouths, the page, the screen, the universe they live in and have lived in as long as I began navigating it on June 14th, 1995. I have an unequivocal lack of confidence in that universe.
8. I am glad that Devinsky and Friedman are appealing to the federal government to remove marijuana from its draconian place as a Schedule 1 drug, but this train has left the station and, given the tone of this piece, frankly, I don't give a flying foo-foo what the Almighty Neurology World thinks.

I'm not just seeing. I'm spitting stars.

Empathy***

It's already been a hell of a week, and I'm dragging. I feel sort of done. Done with all of it.

Do you want to know the only thing that's keeping me going?

There's this test you can take on the New York Times website. It's called Can You Read People's Emotions? Well, I do love a personality test -- can still remember how avidly I participated when they were published in Teen Magazine or Young Miss back in the dark ages.  There's nothing like the self-satisfaction gained when you find out whether you're an INFP or an EJFX or whether your breasts can hide a pencil and are therefore sagging too early or perky enough that a pencil drops to the floor. I dropped a lot of pencils in my teen years, and when I stood with my legs together, there were three distinct triangles of space from my thighs to my ankles. Remember those markers, all you ancient comrades?

Anyway.

I took the reading people's emotions test and scored a whopping 35 out of 36 which evidently makes me some sort of mind reader, and all week I've been wondering how I can parlay this new-found skill into an occupation. Someone suggested the FBI, but my absurdist streak is too high for such an earnest position. Someone else suggested poker, but the last time I played cards I won sort of effortlessly because I'm lucky, and I pissed off the Card Powers That Be which kind of bewildered me. Today, I actually read an article about some study that found that those who read literary fiction were more empathetic than those who read popular or regular fiction. Examples for literary fiction were the obvious: Don Delillo, Chekhov, etc. Examples for popular or regular fiction were Danielle Steele and, not surprisingly to me, Gillian Flynn's Gone Girl (a book that I read and felt insanely jealous about, again, that such pablum was devoured by so many). See those glasses in that photo above? Well, I'm a literary snob, and I don't give a damn about claiming that.

Given that I scored near perfectly on the reading people's emotions test and am an unapologetic reader of literary fiction, my empathy skills know no bounds. Dump it on me, people. I can empathize.

Oh, and see those breasts up there? They're currently holding a Kindle Fire under them, so don't be imagining that my head is getting too big.









***First person to guess my emotions when I took that selfie up there gets a cupcake.

.

How to honor your child

We knew each other before Aug. 16, 2011, when my perfectly healthy 2-year-old son was overcome by an autoimmune encephalitis. “Was that you the other night?” I asked as he, his wife and their oldest daughter now got out of their double-parked van into the sticky summer air. “Yes,” he replied, “I hadn’t seen you in so long I didn’t recognize you.” Without effort or emotion, I shared the story of our 15-month hospitalization and efforts at navigating our new lives.

The above is an excerpt of a personal essay written by a friend of mine who I met through blogging. It's the second year anniversary of her son's diagnosis, and I can't imagine a more articulate and moving way to honor him.

Read the whole essay here on Motherlode at The New York Times.