When I Don't Love Los Angeles

I was just drinking some coffee (it was bitter) and eating an English muffin with egg white and turkey bacon (it was kind of gross, really), waiting for my morning movie to start (you'll get the three-line review tomorrow) when the woman pictured above walked in. She was Swedish, and she wasn't young. I'm not sure whether she was a Sikh practicing Kundalini yoga, getting ready to jazzercise or was just out for a cup of coffee on a Friday morning in Los Angeles, but this is the sort of stuff that makes me not enjoy the life here. I simultaneously feel superior and intensely inferior. I think Why? when I look at her, head to toe, and then I think God. I wish I were a thin, tall blonde Swedish woman with a smile on my face. I feel old this afternoon, bitter like my coffee and missing New York City where my dark hair, black tee-shirt and careworn visage might be appreciated. Better yet, I bet I'd be a goddess in Cosenza, my ancestral home in southern Italy.

Reader, what's happening in your parts (not pants)?

How We Do It, Part XL

I hate it when people ask me what Sophie knows. I don't know what Sophie knows. I'll say everything and I'll think nothing. I'll say nothing and think everything. A man once asked me whether she knew anyone, whether she could feel love. He popped peanuts into his mouth. He was nice, I heard, and now he's dead. A child therapist once asked what her abilities were, how much can she really contribute to the family? After I removed the hatchet from my chest, I cleaved her in two. So, I don't know. I've hissed at Sophie in the night when she doesn't sleep, when she's seized and is awake, agitated, her brain a seeming jumble, a jungle -- trees, a forest, dense and dark and obtuse. A ruin, her life and mine. These are jungle thoughts. I've hissed at her in the night, not nice, so not nice, and I know she knows me then. She knows me and I'll imagine she hates me. I reframe the not-knowing to punish myself. Where she leaves off and I begin or where I leave off and she begins. I am thrust backward to a motel room in La Jolla, the year of El Nino. The rain pelting down. The navys of the two rooms we shared, the electric stove, the overhead fan. The crib. How she never slept. She was so beautiful, her hair a cap of ringlets, her head tilted. She smiled and folded her legs, even then.

Sophie Rocking a Black Turtleneck and The Brothers

Slipstream

I love the word slipstream, to feel the soft s on the tongue, the hiss of air, hear Van Morrison's if I ventured in the slipstream and I thought about it, the slipstream, when I thought about Sophie tonight. Sophie is sleeping a lot lately, sleeping soundly and peacefully and while it might be because of the marijuana, it might be because she is resting, her brain is resting. She is resting.  A slipstream is defined as a stream of air forced backwards by a propeller or the area of reduced pressure behind a fast-moving object. I thought of Sophie when I read the word slipstream, and she might be in the slipstream or she might be the fast-moving object behind which we, the unknowing, the relieved (she isn't seizing!) stream, in the slipstream, an area of reduced pressure. I'm thinking these things and singing in my head, in silence easy.





Listen to Astral Weeks here.

Medical Marijuana Update, #10

art by Adrienne P.

When we visited Sophie's neurologist last week, Sophie was brewing a cold and had had a bad day, seizure-wise. She was clammy and spacey, sat in her wheelchair for the entire time and didn't make great eye contact. She had been seizure-free for nearly two weeks until that day, and a part of me was not only bummed that I wouldn't be able to share a seizure-free child with The Neurologist but also anxious that the seizure-free period was just a dream, a honeymoon, the usual. That being said, The Neurologist was pleased to hear of the efficacy of the Charlotte's Web, and she recommended that we start to wean Sophie from Onfi, the benzodiazepine that she's been taking for years. The Neurologist is a woman, younger than I, very kind, thorough and efficient. When I left her office and drove home, I had to wonder at her equanimity, and -- by extension -- the relative nonchalance of the neurological community in general, in the face of what I believe is a revolution happening in epilepsy treatment.

It seems to me that these people should be freaking out about these kids. Yeah, yeah, I know A Scientist has no business freaking out over anecdotal reports from a patient. I realize they have to do the double-blind placebo controlled studies and protocol must be followed. Yeah, yeah, I get that. But you know what? Sophie was diagnosed with infantile spasms when she was not even three months old. Since that day she has been on twenty different drugs in different combinations and has tried the ketogenic diet twice. She's been infused with immunoglobulin fifteen times. She's been tested for all known genetic mutations that would call for specific treatments and come up negative. She has never been seizure free in nineteen years. Until now. Until a few weeks ago.

That, to me, calls for a doctor shrieking in the hallway to his or her colleagues.

What this reminds me of, though, is the day, years ago, when Sophie was diagnosed with infantile spasms by two young Fellows of Neurology. I wrote about that day and mused on whether a more appropriate way to communicate the terrible news that was let loose would have been for those Fellows to wrap us in their arms and weep for us.

Humor me.

I want The Neurologist to shriek in the hallways about Sophie and the other kids who are seeing this treatment work for their kids.

Until then, I will do so.

The Anthem Bonfire Party

February 1, 2014

Dear Customer Service,

I have made repeated attempts to get in touch with you regarding my daughter, Sophie XXXX's  Anthem Blue Cross membership, but I have been unable to get through to a human for some time. I understand how busy you’ve been with changes because of the Affordable Care Act, and I am taking this opportunity to inform you that Sophie will no longer be a member as we have decided on a different and better health plan for her and for our family.

Please cancel Sophie XXXX's membership. Her ID number is XXXXXXXXX.

I will also take this time to let you know that our affiliation with Anthem Blue Cross has never been anything but a frustrating nightmare, that you have caused great anguish and stress for our family over the past decade and that we are beyond thrilled to be rid of you. I can only hope that your company will learn to be as ethical as you are profitable, but I imagine these are high hopes, indeed, and I don’t pretend that a small customer like ourselves will make much difference leaving your business.

Sincerely,

Elizabeth Aquino

The Anti-Super Bowl Party

Both my boys are off to a Super Bowl party at a friend's house which lets me off the hook from even listening to it from another room. I just made some lentil soup with kumquats, so I'm inviting you over to have a bowl of soup and some crusty bread. I've got a copy of Fruitvale Station and a Netflix copy of The Intouchables -- take your pick -- and some beer, bourbon or wine to drink. It's a blustery day here in Los Angeles, a tad overcast and temperatures around 60, so when you want to go for a walk, we can do that, too.

Oh, if you're one of those people that enjoy watching the billion dollar industry of violence and brain injury, or claim you love the commercials, and you think I'm just a stuck-up snob eating lentils and kumquats, I've bought some Velveeta, a can of Ro-tel and a bag of tortilla chips and plan to make a bit of that for Sophie and me.

Reader, let me know if you're coming.

Mooning Over Los Angeles

The Abandoned Valley

Can you understand being alone so long
you would go out in the middle of the night
and put a bucket in the well
so you could feel something down there
tug at the other end of the rope?

Jack Gilbert
Refusing Heaven (2005)

Saturday Agenda

I have lacrosse on the agenda today.

Lacrosse and, oh, more lacrosse.

Reader, what's happening in your parts (not pants)?

Saturday Three-Line Movie Review

I could probably write a three word review of Jason Reitman's saccharine peach pie (significant scene!) of a movie Labor Day, and those three words would be Really?, Really?, and Really? Neither Kate Winslet's acting chops nor Josh Brolin's manly biceps could possibly save this Damsel-in-Distress-Saved-By-Ex-Convict-Prison-Escapee-and-Creepy-Adolescent-Nerd-Son melodrama that ranks up there with Autumn in New York as a movie where I both squirmed in my seat because of the lack of explicit sex (which might have saved it) and felt embarrassed for the filmmaker. Really.





Other 3-line movie reviews:

Philomena

August: Osage County

Her

American Hustle

Happy Chinese New Year!

Last night, Oliver persuaded me to take him downtown to Chinatown to the Midnight Temple Ceremony at Chuan Thien Hau Temple. We were probably two of perhaps ten non-Asians there, and while I didn't utter a word to anyone other than Oliver it was probably one of the greatest two hours of people watching in my own city that I've ever experienced. We ate delicious Chinese rice and shrimp soup handed to us in big styrofoam bowls. We lit incense sticks and carried them into the temple. We looked at the hundreds of offerings -- oranges and gifts and little packages and bags of candies. We watched a terrific Chinese Dragon Dance, and at the end stood on the stairs as literally 500,000 firecrackers were set off, our hands clapped over our ears for what seemed like at least ten minutes of deafening explosions. I had a wonderful time but believe I should get a Mother of the Year award for doing so, especially since we drove home at 12:30 in the morning.

Make-A-Wish Caregiver

Gilles Marini

dedicated to Sandra

I was talking to my friend Sandra last night, checking in on how she's doing. Sandra is the mother of a little boy who contracted a vicious immunological encephalitis when he was two and a half years old that decimated his neurological system. From what I understand, he was a typically developing boy who laughed and played and spoke and ran and jumped, but after a fifteen-month stay in the hospital (yes, 15 MONTHS), he left severely disabled with countless medications as well as an uncertain recovery and future. Sandra, her husband and their son live what I would call an extreme life, where a typical day and night might include battling systems of care and juggling serious medical crises as well as working regular jobs and trying to maintain some sense of normalcy in one's relationships. To people who do extreme parenting, there is often no end in sight. 

I checked in with Sandra because her little boy was going into the hospital again this morning for two surgeries, and I wondered what I could do for her. Sandra has the same sense of humor as I do, which means dark. Very, very dark. I imagine that given the shitty things thrown her family's way, that sense of humor sustains her from madness -- not anger, mind you -- but madness. I don't even think I could do justice to some of the hair-raising stories she has told me -- you'll have to just take me at my word. Madness.

We had a conversation last June about my Brothers and Sisters television show binge, and it was then that she told me about her infatuation with Gilles Marini, the extremely good-looking actor who plays one of the characters on that show. He's so good-looking that when I searched for a photo of him to put up with this post, I didn't even make it extra-large because it seemed almost obscene. When my son Henry began high school, I was excited to share with Sandra the fact that Gilles is a father at the same school, and that I had even sighted him once or twice, most recently at the Christmas tree sale. I know this sounds utterly ridiculous, but I don't care. When you're up all night with a child who is screaming for no apparent reason or waiting to speak to an insurance company for approval of a life-saving medication or juggling the schedules of mediocre nurses who stand you up, or -- god forbid -- trying to do some paid work so you can afford your apartment -- well -- you deserve to hear about your friend's proximity to one of your fantasies. As far as I'm concerned, you can think about or do whatever the hell you want. Whatever gets you through the night, right?

Anywho.

Last night, knowing that there was really nothing I could do to ease Sandra's anxiety or lessen her pain or that of her son, I suggested that I might contact Gilles Marini and ask him whether he'd fly out to the hospital where she's staying and pay her a visit. Sandra said that would make her feel much better, and we laughed like people do online when they don't type LOL (I despise LOL). A few moments later, I had the brilliant idea -- humor my conceited ways, please -- that there should be a Make A Wish Caregiver foundation that granted wishes to the caregivers of ill and disabled children and adults. At this very moment I have three caregiver friends, two of whom are in the hospital with their children for extended stays and one of whom has just left after an extended stay. I have another friend who has been caring for her severely disabled daughter for more than thirty years -- by herself -- and yet another who cares for his young adult daughter by himself. I have countless friends who have been doing this beautiful and extreme caregiving for probably what amounts to hundreds of years if I combined them. Hell, you know from my endless tales here on the old blog that I've been doing the same sort of shit for nearly twenty years! I'm sort of joking about the need for a Make A Wish Caregiver operation -- and sort of not.

Sandra's wish is that Gilles fly out to the hospital where she is bunked down with her recovering son in the PICU. She hopes that he'll give her a tango lesson. Gilles? Are you reading this? Hello?

Readers who are caregivers living the extreme life: what would you wish? Dream big, babies, dream big.

Sunset Over Ralph's

dedicated to Robert as he recovers and Jeneva as she forges on

When I moved to Los Angeles sixteen years ago, I thought the name Ralph's for a grocery store chain was ridiculous, and I guess I still do. Yesterday -- or maybe it was a couple of days ago, I snapped yet another photo of the sky over Ralph's parking lot, and as I scrolled through those photos in my phone, I thought about how the ordinary and the extraordinary are right here, right now, nearly every moment of every day. Then I thought about the ability to hold contrary thoughts and feelings, how that ability is honed over the years when your life experiences dictate it, and how that ability is so difficult to articulate. I spoke at length this afternoon with a friend who is helping me to get my "book" up and off the shelf where it's languished for years. Our conversation ranged from the intensely personal to pure editorial business, but at some point in it, I tried to convey how my life is at once horrible and perfectly all right. I meant -- or mean -- to say that it's not horrible. It's fine. It's fine even being horrible. When Sophie was a tiny baby, newly diagnosed with her hideous seizure disorder, when we were just stepping onto the path of a very different world, I was taken to an Orthodox Jewish holy man somewhere in the Bronx. I rode in a limo up to the hospital where this holy man was convalescing after suffering a stroke. I walked down a hallway, clutching Sophie to me (she was not even three months old), escorted by a few bearded men and led into a room where a man sat in a wheelchair, his head resting on his shoulder. He had the most piercing eyes I had ever seen, and I had to almost look away. He said a few things to me in Hebrew, and the men who had escorted me translated them to me, words that made me stop cold as they were things that no one, no one at all, should have known in that room. He lay his hand on the baby for a blessing or something, and he looked up at me with his eyes (his head on his shoulder) and he said, She will be all right. Your baby is all right. He gave me an ordinary little medal with a Hebrew symbol on it and told me to pin it to her clothes, near her skin. I did that every day for years, I think, and now I don't remember when I took it off or what I did with it. It doesn't matter, though, because despite everything, Sophie was going to be, she was all right. She is all right, and so am I. Ralph's is a ridiculous name for a grocery store chain, but damn, sunsets sure look as good over Ralph's as they do anywhere else.

A Cure for Everything

The Husband has returned from the mother country with knives and chocolate.