Books & Bakes

My little sister Jennifer is here visiting. She's got that thing, that touch, that know what you're doing as far as arranging a wall of paintings, throwing cool fabric over old furniture kind of thing. That's what she's been doing all day.

Tonight is my monthly Books & Bakes salon. Saint Mirtha had an unexpected emergency, so I'm going a little nutso in the kitchen. I'll post my menu and all that good stuff later tonight or tomorrow morning, if I'm still alive. We read J. Ryan Stradal's novel Kitchens of the Great Midwest. It was an entertaining read with great food scenes. Lutefisk is involved. Look that up and try to imagine this one-half Italian, one-quarter Syrian and one-quarter Scotch English gal serving it.

I hope your Friday is going well. It's still hot as hell here in southern California. Thank the good lord Jesus for air-conditioning.

Fear, Carry and Conceal

Tucson, Arizona, 2011; photograph by Paolo Pellegrin
via The New York Review of Books

I have several friends, particularly in the medical marijuana community, who are ardent Christians and political conservatives or libertarians. Their beliefs in many regards are antithetical to my own, despite the fact that we share much in common, namely our children with seizure disorders. A couple of years ago, I had to disengage from one member of this community when he derided the anguished cries of the father of the UCSB shooter for stricter gun laws. This person then derided me, called me a coward and declared that it was people like himself that had to protect lazy people like me. It's too easy, I think, to call a person like this insane or stupid or even to feel scared as shit that they're carrying guns around.

Lately, I've noticed on Facebook that a number of these people -- my friends -- are posting quite exuberantly about gun shopping, about applying for gun licenses and carry and conceal permits. The comments that follow these status updates are enthusiastic, even down to the emoticons of guns and happy faces. Their reasoning is generally along the lines of protection, that carrying a gun will protect them and their family. The other day, I sat on my front lawn with Sophie and a guy who was going to do a little work on my house. He, too, is an ardent gun enthusiast and spoke openly about the need to protect oneself from bad people, to arm oneself and learn to shoot well, in the event of a home invasion or a threat to my children or myself.

I might just be a dumb-ass, but I am not afraid.

I really don't understand what everyone is so afraid of, why they think concealing a sophisticated piece of killing technology is nifty and what sort of statistics they've seen that I haven't regarding defensive gun use in the home or out at the movie theater or in a grocery store or child's school.

To be frank, the only caveat to my lack of fear is -- well -- you. You with your glib photos of guns, your cocky aims to protect yourself and your children from dark forces, your conceal and carry ardency, your deep cynicism and paradoxical blind faith in -- what? In what lies your faith? Please enlighten me.


I've been mulling these things the last few days, inarticulate and struggling to understand, repelled and repulsed and uncomfortable. I didn't want to resort to sarcasm, to scorn or contempt -- I like these people, feel bonded to them, even devoted. Yet, distance. My brain's wrappings -- they're undone. I don't understand. In one of those amazing instances of synchronicity, tonight I read the brilliant Marilynn Robinson's long essay on faith and guns and fear in The New York Review of Books.  I hope that it will provoke some response, that I will. I'm not afraid and have nothing to carry or conceal.

Rapture in a Strip Mall

I was just about to combust when I received one of three daily phone calls from Sophie's school with an ever cheerful robot voice letting me know the latest salient facts regarding SENIORS. New readers might not be aware that Sophie, as a 20 year old, is still eligible to attend the great LAUSD, a mixed benefit that I am grateful for, I am, but that this is her third year as a SENIOR thus we are subject to all the excitement and responsibility that is due a SENIOR, all excitement that she is distinctly not a part of in any way but this robo call daily, until May of 2016 when she will not graduate but go on to her last and final SENIOR year. There will be no SENIOR portrait or cap and gown or prom or even a visit from the United States of America Marine Corps Recruiters (yes, they still call), and with the exception of the last, it makes me a bit bitter, a bit -- well -- combustible.

I didn't combust, though, because I left to have the most amazing lunch I've had in years and ended up in a near rapture. There's my hipster Instagram photo of homemade celeriac pasta with celery root, celery crudite with pickled mustard seeds, celery ash, and crispy Jerusalem artichoke. I ate this in about 3 seconds flat and then licked the plate. It's from a new little restaurant in a strip mall on Santa Monica Blvd in Hollywood. The restaurant is called Baroo, but I will henceforth call it Rapture in a Strip Mall. Don't get your panties in the proverbial Biblical wad. The dish cost $9. The chefs are Korean, and I think the fanciest, most prestigious restaurants in the world might be missing a chef or two, and they're right here in the big shitty in a tiny place in a tiny strip mall. Seriously. Don't tell anyone.

Here's the dish that my friend ordered:

It was called the seaweed something or other and had grains and berries and horseradish and each flavor just hid, all subtle, and then jumped out at you as you chewed and then swallowed and then broke into tears. I won't even tell you about the shortbread, two tiny rectangles with some kind of little giblets of something or other on the top. My friend and I ate those standing up, outside the car, and it was sort of obscene given how high the temperature is today anyway.

This is why we live in the shitty, folks, even if God is still using the blowdryer on us, the humidity is rising, it's 104 degrees in the shade and we're praying that when El Nino comes, we don't return to the mud from whence we emerged.

Despite the Heat, It'll be Alright

Dang. Let's get some mileage from the weather here in the shitty. It's after 5:00 in the afternoon and still 95 degrees outside. It feels like God is blowing some giant blowdryer at us with all the lemon leaves curled up, the dogs' tongues, the palm fronds lethargic yet valiant and the crows silent. At last. I do dislike a crow. We're digging our new little smoothie/bullet/what the hell do you call it machine, mixing up coffee and ice and milk for me, protein powder, berries and yogurt for The Brothers. Lovin Spoonful or Joe Cocker? I have a funky right eye that's crusted over in the morning and tender during the day. The eye doctor says it's allergies, not infection, and the dry air. Stripped and parched, even my eyes.

Back of my neck getting dirty and gritty.

Here's Joe:

Dog Days

Tacos on La Brea

It needs to rain here, but it won't because it's September, the hottest month of the year.

Memory: One time I was walking home from the pool in my neighborhood, wearing only my swim team bathing suit and some sandals. I was a very brown girl, tanned easily and never burned. A sheen of sweat on my skin, and drops off my scalp, down my face, my back. My skinny legs mosquito-bitten, knobby knees. I made my way up a particularly steep hill, the heat waves undulating off the black tar of the road. It was Georgia in August. I don't remember being with anyone, not even my sister. I stopped at someone's driveway, and little black dots danced in front of my eyes right before I collapsed.

Happy Labor Day

Serial Killers and Box Lacrosse

Henry had his first box lacrosse game of the season this afternoon. That's him right there in the middle. Whew. Box lacrosse is scary to watch. I wasn't made for watching rough sports and wonder what sort of karma I'm enacting (is that what you say?) as not a single one of my children really likes to read. Honestly, I dreamed of one day being a sort of Marmie, sharing my favorite books with my brood. Instead, I find myself standing on the highest bleacher in a hockey rink, watching my boy slam himself into walls and others into the ground, all while running and waving a stick with a really hard, small ball. While the other parents yell and cheer and catcall the ref, I wince at every thud. My favorite part of the game is when it's over, and my beautiful boy lopes toward me in his nonchalant way, and I wonder whether everyone, just everyone, wonders who that boy is -- my boy.

Otherwise, I'm in a bit of a funk. I did go back to kundalini yoga this week and am determined to get back into it, get in some kind of physical shape and lose some weight. Enough is enough, right? I have an amazing new ghostwriting job that will keep me busy over the next three months, I'm on a mission to find an agent for my manuscript that I finished at Hedgebrook, and all three children will be at school next week for the first time in nearly two years! Oliver is going to high school, so we're taking a break from homeschooling. We're going to see how it goes as we've found a school that we believe fits him very well. I need to work and will be able to do so, now, every school day. I am continuing my Books & Bakes salon Fridays each month, so if you're in Los Angeles and want to come, please let me know. This month we read J. Ryan Stradal's Kitchens of the Great Midwest. It's an entertaining novel by a local writer that got some nice reviews, and it has a lot of inspiring food so I'm looking forward to preparing a great meal and facilitating excellent conversation.

Despite my aversion to violent sport, I'm actually on a serial killer bent. This is unusual for me (I did not like any of those Swedish books or the HBO series), so heads up. I just finished binge-watching an English miniseries with Gillian Anderson called The Fall. Despite it being about a serial killer with the usual gruesome attacks against females, the show has some incredible acting in it, great writing and complex characters. I also just started reading Jennifer Pashley's novel The Scamp, which is described as "an intense, riveting sage of .... a girl's determination to take control." I think there's a serial killer in it as well, and while I wouldn't ordinarily read this genre, I had the great good fortune to spend some time with Jennifer last night after she read from her book at a local independent bookstore last night. She's a good friend of a very good friend of mine, the writer Shanna Mahin (who wrote the hilarious romp of a novel  Oh! You Pretty Things earlier this year), so I took the recommendation seriously, the writing is terrific, and I literally can't put the book down.

Well, that was a rambler of a Saturday post. I hope you have a lovely long weekend. Tell me all about it.

Books I'll Probably Never Read*

Life's too short.

Never say never.

But.

1. The rest of Proust
2. David Foster Wallace's oeuvre
3. Jonathan Franzen's new novel
4. Any future book by Donna Tartt
5. Any book in-between the first one and The Goldfinch by Donna Tartt
6. New YA books
7. Old YA books
8. Anything categorized as YA 
9. The rest of Thomas Pynchon
10. The Count of Monte Cristo
11. The Life and Times of Tristram Shandy, Gentleman by Laurence Stern
12. Manga Shakespeare
13. Anymore Shakespeare
14. anymore Saul Bellow

* Because I don't want to be bashing contemporary writers, this list is basically of books that I have no desire to read, have read a bit of and didn't like, I'm bored by and in the case of Proust (who's dead), I've despised. 

My Syrian Relatives

Those are my Syrian relatives who immigrated from Homs in the early part of the twentieth century. My grandfather is the second from the left, one hand on his mother's shoulder. Grandpa was a tough guy, smoked packs and packs of cigarettes, cursed in Arabic and called me Rosalita because I looked more Italian than Syrian.

I think about my Syrian relatives whenever I read about the chaos and tragedy of Syria. I imagine people with the same blood as mine are running through the streets or away. Like everyone, I am struck dumb by the constant stream of photos of the millions of desperate refugees, particularly the one of the little boy, face-down in the sand at the water's edge. What do we do in the face of such madness? What do we even think? I can't look away. I can't not think about it. I wish that I could do something about it.

I don't believe in borders, in walls and nations, to tell you the truth. I feel no pride as an American, but rather fortunate, lucky to be here and not Syria. Lucky, not proud. I admire the actions of Germany and Iceland who have announced programs to take these refugees. I wish that I could offer my home to a refugee, but how do I do that? How do we do that? I live in America where the ruling class can't figure out a proper immigration policy, where a leading candidate for president wants to build a giant wall at the border to keep people out, where people complain about illegals getting an education or a driver's license or food stamps. I'm an American and complicit. I'm also Syrian, and I want to do something.

Large Gargantuan Doctor Minds™

The Third Circle of Dante's Hell, The Inferno
Gluttons

Today's visit to The Neurologist included the usual bringing her up to speed on the amounts of medication Sophie is currently on, how much of the Onfi we've weaned since the last visit and a couple of jokes about the drug Fycompa (that causes homicidal and suicidal ideation) and the drug Potiga (that causes blue lips and nails). I made the jokes, and The Neurologist gamely laughed. We also discussed the CBD and the THC and how well they're working for Sophie. She even walked in without a wheelchair! The Neurologist exclaimed. Then, apropos of nothing -- or maybe because of the homicidal/suicidal ideation and blue jokes -- she mentioned the Vagus Nerve Stimulator, a medical device that I've heard about since it was first introduced in the late 1990s when two of my friends at the time traveled to Ohio to have one put in their young children with refractory seizures. The various neurologists we've seen over the years bring it up in a sort of lethargic way, so I've never really thought of it as a compelling treatment for Sophie, and I still don't, even with what I learned today from The Neurologist -- that They've made some enhancements, namely an ability to be adjusted in smaller increments. Such is my lethargy, I don't feel like telling ya'll what the VNS is, so feel free to look it up on the Google. My mind wandered a bit when she told me about the enhancements -- toward wondering why mini-vans were first made with only one sliding door and why having them on both sides was such a genius innovation and couldn't have been done in the first place.

At worst, The Neurologist skipped over the extraordinary results of CBD and THC on my daughter. At best, she was doing her job and sharing information, and I'm grateful for that.

I'm going to call a spade a spade. Sophie's neurologist is Dr. Kalayjian. I really like and respect her. She is very supportive of what we're doing and sympathetic, always. She's a good doctor. At some point in the otherwise enervating discussion (remember that word?), she said that Another Neurologist exclaimed the other day, I need more research! I get questions all the time now about CBD, but we just don't have the research! In calling a spade a spade, I'm going to call the Another Neurologist, Dr. Heck. I've known Dr. Heck for a really long time and even sat on the board of the Epilepsy Foundation of Greater Los Angeles with her for a time and at the same table at a gala or two. She never remembers me, but that's fine. She's clearly got a large gargantuan doctor mind.™ It was Dr. Heck who summarily cut off our panel discussion about CBD last February at the Epilepsy Brain Summit. I'm calling spades, spades, when I also name Dr. Hussain as the doctor who also patronized us that afternoon and who continued to do so in private emails I exchanged with him. I believe I reached the point of no return in the email thread when I pointed out that when he was in high school, Sophie was diagnosed with infantile spasms, and that today, twenty years later, as the head of the infantile spasms program at one of the best epilepsy centers in the world, he's still using the exact same treatment (well, now we've got Vigabatrin formally approved despite it causing serious eye damage and then there's The Knife) with the same abysmal results. I might have added that it would behoove him to have a bit of humility, or maybe not. I can't remember because my tiny little mother mind™ had spontaneously combusted in the confrontation with his large gargantuan doctor mind.™

Anyhoo.

Why am I typing this out here, calling spades, spades? As I made my way through the circles of Hell that constitute the USC parking garage, mainly curse words and phrases came to mind as responses to Dr. Kalayjian's comment about Dr. Heck "needing more research." I didn't have it in me in the moment back in the office, distracted as I was by Sophie's formidable strength and drive to get up and out of the joint (no pun intended). To be honest, these phrases might have included if she and the rest of the docs got their heads out of their asses..., and f**k your godforsaken studies, and try looking them up because there are reams of them! 

Reader, I was not directing these ugly thoughts at Dr. Kalayjian, as her head is decidedly on her shoulders, and she's very supportive or at least superfically so. They were directed at Dr. Heck and all the other large, gargantuan doctor minds™. Again, these thoughts only came to me as Sophie and I stumbled through the parking garage looking for our car (I am directionally challenged). When I'd finally found it and situated Sophie in her seat, given her a cold drink and turned on the engine, all curse words flew out the top of my head and what I was left with was this:

Studies? Studies? 
More research? 
How about Sophie? 
Why the hell are you not responding to Sophie? 
Here's your study! 
Here she is!
Look at her!
Pay attention! 
Listen to me! 
Listen to others like me! 
Stop blowing us off!
Stop reporting us to Children's Services!
Stop prescribing multiple drug regimens! 
Be excited! 
Be curious! 
Take notes! 
Follow our progress! 
Take it seriously! 
Don't dismiss us as anecdote!
Open your minds!
Remember that with few exceptions, you are no more intelligent than most of the people caring for their children with refractory epilepsy and in many cases, you are less experienced!
Your field is a dark one, and you do not have all the answers!
You missed the train eighteen months ago, and I'm giving you a chance to get on board! 
Take it!

Cannabis Oil Questions Answered, #7

When you give Sophie THC, do you worry that she is getting high?

No.

* That was the short answer. Here's the long answer. We are currently supplementing Sophie's cannabis oil with four or five drops of THC a couple of times a day. The THC seems to help with the Onfi withdrawal symptoms, particularly the tremoring that she was doing, over and over, and seemingly all day long. The tremors looked like seizures, even, as they were jerks -- hard ones -- in her arm and leg. When she sat on the floor, cross-legged, she'd bang her knee over and over on the floor. If you walked with her, she'd jerk her arm, over and over. They were not seizures, we found, through that godawful EEG. She doesn't do it anymore, as long as we give her those few drops of THC. As for getting high, if she feels a bit high, I really don't give a flying foo-foo. Somehow, we are supposed to accept the fact that every single one of the drugs that are given to our children from birth onward have hideous side effects, or are being used "off-label," or have an "unknown mechanism of action," yet are discouraged from trying a medicine that has thousands of years of history of use, reams of studies already done, no reported deaths and arguable long-term impact on the brain. 

I know, I know, I know. I've talked about this until I'm blue in the face.

An older man in the parking lot of Trader Joe's noticed the End Epilepsy bumper sticker on my car. He asked me what it was all about. I told him that my daughter has epilepsy and that I used to be on the board of the Epilepsy Foundation of Greater Los Angeles and that I supported its efforts to end epilepsy. I also told him that my efforts now were more for anyone or anything that supports the medicinal use of marijuana. He told me that he has an adult son who had terrible seizures throughout his childhood and how he wished they could have used it. He asked me whether Sophie was using CBD or THC or both. I said, both. Then we laughed at people's concern over whether an epileptic might get high with CBD and a few drops of THC. I wish! I said. In fact, I told him, I support the legalization of marijuana both recreationally and medicinally, and I'm tired of making the distinction.

Other Cannabis Oil Questions Answered

# One
# Two
# Three
# Four

# Five

# Six

See You Over There

I'm at Gratefulness.org today. 

Come visit!

Ventured into the Slipstream

Happy birthday, Van Morrison!

Oliver Sacks' Illumination

Oliver Sacks' Anthropologist on Mars was published in February of 1995, and Sophie was born one month later. By that summer, she had been diagnosed with infantile spasms and we had begun the journey that would take us to proverbial other planets. I read Sacks' book with the same relish that I'd read his previous ones, but this time I felt he was speaking directly to me.

I lived in New York City in the nineties, not far from where Dr. Sacks practiced. I had looked up his address and telephone number in the phone book. I thought he sat behind a great wooden desk with a small light that illuminated not only the paper in front of him but also the consciousness of the people about whom he wrote. I fantasized about calling him and imagined we’d have a conversation about Sophie – not so much about stopping her seizures and making her normal but rather about her integrity as a human being despite whatever peculiarity or abnormality she possessed. I never called Dr. Sacks, but I did read everything he wrote. I also sat in a chair in the third row from the stage where he stood reading aloud from his work many years later in Los Angeles. Because his words had so deeply resonated with me, sustained me, really, during some of my darkest days as I wrestled with Sophie’s disability, her seizures, her inability to speak or care for herself, her identity and mine, I felt an enormous impulse to jump on the stage and embrace him. I didn’t do that, either.

This morning, I woke to the news that Dr. Sacks had died. I understand that some disability activists have criticized him for exploiting his patients’ disabilities in the interest of narrative. Scientists have criticized him for emphasizing narrative over the clinical. More, though, have loved him and been illumined by his writing. It’s been more than twenty years since I read An Anthropologist on Mars, and while my daughter’s brain has remained a mystery to the neurologists that have failed to help her clinically, her integrity as a human being, reinforced in my own mind by the writing and life of Dr. Sacks, is far more evident. I will miss knowing that Dr. Sacks’ light is on, somewhere in the world, and am grateful for how he shed it on Sophie and me.