Saturday, December 20, 2014

Medical Marijuana Mama Mystery

I felt only the tiniest need to explain things to the young girl at the store where I bought Sophie this necklace today. Henry and I were also buying a present for his girlfriend, and for a moment I believe the girl thought that it was part of the present. I made it clear that the necklace was for my daughter and not the girlfriend and let the image of the middle-aged woman buying a necklace depicting a marijuana leaf for her disabled daughter be a mysterious one. How many chances remain to be a mystery when you're 51 years old?

Sophie remains a mystery at age nineteen.

And isn't it mystery that this weird and ancient plant is changing our lives?


So, last night I made gnocchi with Italian sausage and Savoy cabbage. I'm using this very cool food service called Blue Apron which you should check out all on your own as this is not a sponsored post nor an infomercial (I only hawk friends' books and creative endeavors). That's Saint Carmen in the background, helping with Sophie. When the boys sat down to eat, I learned that they had made a bet on whom could keep their hands the straightest throughout the meal for the longest time.

They set the table that way. They got drinks from the fridge that way, including ice. They sprinkled parmesan cheese that way, and they ate and drank that way. They also laughed huge guffaws throughout the dinner while Carmen, Sophie and I shook our heads and occasionally burst out laughing, too.

Reader, you know how you wonder what dark secrets lie behind families' seeming normalcy?

There is no darkness here, and there might not even be light.

There is idiocy of the merriest proportion.

When Oliver started screaming that his hand was stuck and then, for real, started to nearly cry because of the pain, when I stopped drinking my 22 oz. bottle of hard cider long enough to rub his cramped hands vigorously, Henry declared himself the winner.

Later, I had to lie down to digest all the merriment and my 22 oz. hard cider.

How lovely are my branches.

Friday, December 19, 2014

Thursday, December 18, 2014

The Yuletide Season Pleasure Sampler

There are many things making me feel like I'm running off the rails this December. There are also many things that are giving me pleasure. Here are some:

1. Those Janis Joplin stamps. The package looks like a single record, and on the other side is a great big photo of Janis. They have Jimi Hendrix ones, too.

2. I heard this song on the radio yesterday, and it made me happy. It makes me cry a little, too.

3. This list of NPR's Maureen Corrigan's favorite books of 2014 gave me that overly-stimulated feeling that I still get when I go into a library or a bookstore and realize how many books there are to read. It's the good kind of over-stimulation, not the frantic one laced with anxiety that I get when I realize how much money shitty movies make during the holidays.

Sometimes You Can't Pick Just 10: Maureen Corrigan's Favorite Books of 2014

4. Yes, my house looks like one of those obnoxious Christmas shops in a tourist town, but I have several tableaus (if you will) that give me pleasure. Here's one:

Here's a close-up of the bowl and the weird baby that creeps some out but gives me pleasure:

5. I listened rapturously to the last episode of Serial, the podcast from This American Life. It was really pretty fantastic and highly addictive. It also saved my sanity in the car the last few weeks.

Reader, what's making you happy or giving you pleasure or helping to save your sanity during the Yuletide Season?

Wednesday, December 17, 2014

Peace, Anonymous

The positive thing about getting Anonymous comments that are -- let's say -- critical, is that they inspire some thought for me beyond caregiving and dildos and the weird Swiftian farce that is unfolding at Sony. Yesterday, a reader left a comment on my Oceanside Hustle post, suggesting in that ever so gentle tone of the righteously passive-aggressive that I should stop complaining about lacrosse and, rather, begin reveling in the blessing of having a son who can participate in sports.


Reader, I felt the ping of insult and the pang of hurt. I might have felt the teensiest bit righteous, myself. I left a quick and flippant lighten up reply, but I also recognized that queasy you are way too exposed kind of feeling, and then I did a little navel-gazing and figured the reason why I felt these pings and pangs is because there is always a modicum of truth to every bit of criticism that hurts us. I do complain a lot on a moon, worn as if it had been a shell, and I'm hard-pressed to feel grateful for anything on some days. I think a lot of bloggers would agree that complaining is easy to do and can be almost enjoyable, particularly if it's couched in humor or sarcasm. At risk of sounding defensive, my complaints about the trivial stuff in my life (the constant sports watching being the main one) are surely balanced by the obnoxious number of posts where I stand in awe of the two wildly accomplished, beautiful sons that grace my life and the profound and graceful presence of my amazing daughter, all three of whom are such individuals that I can't take any credit for their being other than the literal bones, tissue and flesh with which they're knit from my own and their father's bodies.

But maybe I can do better.

My gratitude for this good fortune overflows.  I'm also alive and dancing on this tired earth as fast and as best as I can.

Peace Anonymous. Now go get yourself a stiff drink and lighten up.

Tuesday, December 16, 2014

One Thing at a Time, Over Twenty Years Worth of Days

Temecula, CA December 2014

So, I was talking to a fellow caregiver yesterday who was having a particularly grim and hard day. Milestone birthdays were involved as was squabbling with The System, and my friend was feeling crabby and exhausted. I told her that as I've grown older and the years have ticked by, I find myself tackling The System in bits, handling maybe one thing a day -- or week or month. Maybe I should say that I handle only one thing a day or week or month not because that's all I can do in any given day or week or month but rather because the effect of doing that thing is generally so debilitating and stressful that it takes at least a day and sometimes a week and maybe even a month to recover. And maybe the reason why the effect of doing that thing is so debilitating is because I've been doing that thing or some other thing for nearly twenty years -- meaning, the effect is or has been cumulative. Meaning just the thought of being on hold and then dealing with Medi-Cal or Anthem Blue Cross or Assurant or the State of California or Accredited Nursing Agency or The Neurologist or The Wheelchair Broker or The Los Angeles Unified School District or The Powers That Be or The Diaper People in St. Louis or the $9,345 chariot bill or the texts from the teachers and aides about seizures or drooling or bowel movements or knees out of joint or constant stimming and humming is enough to have made and continue to make me just this side of crazy.

Or maybe I'm just burnt out.

The one thing I did today was make a call to the agency that helped me to fill out the paperwork and gain conservatorship of Sophie two years ago when she turned 18. I called an attorney at the agency to ask her whether she could help me to figure out Sophie's Medi-Cal situation (and I prefer to pronounce the word situation like the French sit U AH SEE ON with an emphasis on that last syllable because that's what people just this side of crazy do to cope). I'm not going to tell you why I need help with Sophie's Medi-Cal sit-u-ah-see-on because that would be another thing, and that another thing happened last week when I spent three hours with Medi-Cal themselves trying to figure it out. I told myself when I hung up the phone then that I would deal with the sit-u-ah-see-on next week, because I knew it would take about a week to recover. So, I made the call today and left a message and that's it for today. That's all I'm going to do as far as sit-u-ah-see-ons go.

I hope someone out there finds this helpful.

For the rest of you, here's a funny story.

Oliver has been using the word dildo in a joking, obnoxious, thirteen year old boy way for the last couple of weeks, and during one interminable stretch of it, I said, Enough! Enough with the word, Oliver! Just enough! And he stopped and said, Mom, do you even KNOW what a dildo is? and Reader, I controlled myself from bursting into flames or laughter and then told him that if he asked me another dumb question, I'd give him a lecture on onanism.

Monday, December 15, 2014

McMansions in Los Angeles: Curses and Imprecations, Part 2

So, in lieu of having a heart attack, I thought it might be more constructive to document the bullshit going on in our neighborhood. This morning, the 75 year old house directly behind us was razed to the ground in about two hours. Disgusting, right? Now the lovely people who are doing this are uprooting trees that line the three borders. I snapped that picture from the front of the used-to-be-1924-house -- it stood where you see all the dirt; that's the driveway that the guy is sweeping, that red peak is our garage on the other side of the fence. At some point after 12:00, when I was leaving the wonderful Dr. G's office (who provides us with our medical marijuana card! It's been one year and we had to have it renewed!), I received a very tearful call from Oliver. He was beside himself, in agony, really, because they're cutting down all the big trees!

I still had to drive all the way home, and I did so wishing that my southern Italian ancestors would somehow materialize and take care of things. When I reached the street where the devastation was occuring, I made out who were workers and who was a boss. I was tempted to take a photo of the guy in charge, but to tell you the truth, I felt a frisson of not just disgust but fear. He was --- well --- large. In every way. He was smoking a big, very fat cigar and talking on his cell phone when I pulled up in my sexy white Mazda and rolled down my window.

So, are you in charge here? I asked in my lacrosse/disabled kid/homeschool mother voice.

Reader, he didn't even take the cigar out of his mouth, and like someone out of central casting just down the road in Hollywood, he said Yep, and I said, It would have been nice if you'd let us know you were taking out the trees and the fence, and he said nothing and shrugged his big ass shoulders and continued talking on the phone so I rolled up my window, put the pedal to the metal and tore around the corner and into my own driveway where I proceeded to race to my computer with my sons and google stinkbomb.

Just kidding on the last part.

McMansions in Los Angeles: Curses and Imprecations

I woke up to the sound of crunching metal and shrieking glass, a tile roof smashed in, the house behind ours leveled to the ground by construction monsters.

Screw developers and those who would tear down perfectly sound near-100 year-old homes to build big box monstrosities. Screw the conspicuous consumers who want to buy these soul-less houses, multi-million dollar Tinkertoy constructions with indoor fountains and postage stamp pools, their second story outdoor features that peer down into their neighbors' (us) bedrooms and block the sunlight.

Screw all of them and the beasts they ride in on.

Sunday, December 14, 2014

Hedgebrook 2015

My hotel bed, where I lay for many hours this morning with muddled, joyful thoughts

I can't persuade myself that writing is honest work. It's great fun and I love it. 
For one thing, it's the only way I can get to sit down. 

Shirley Jackson

A few months ago, a couple of my writer friends sent me notices about Hedgebrook and persuaded me to apply for a residency, so I did -- at the very last minute -- and took no notice afterward. Yesterday afternoon, in the middle of a lacrosse game, I glanced away from the game and opened an email that said this:

Congratulations! We are pleased to inform you that the Selection Committee has awarded you a 2015 residency at Hedgebrook.  

Having narrowed the original 1466 applicants to a final group of 102, the committee awarded 40 residencies for 2015.  You are one of these select few.  

Reader, I burst into tears, stumbled down the bleacher seats and into the parking lot where I cried a bit then re-read the email and began to freak out. Here's the thing: I will be staying for THREE WEEKS in a cottage on Whidbey Island this summer, where I will find comfort, solitude, land to explore and nourishing meals from our own and other locally grown gardens. The email stated Our objective is to provide you with a place to continue your work. 

I am honestly stunned and have remained so for nearly two days. I woke this morning in the hotel room in San Diego where Henry and I were sleeping and had what I call morning madness, the thoughts that plague you in those dark, dark hours before dawn. How will I pull this off? There must be some mistake! Surely there are others more deserving? It might be impossible for me to accept this! What kind of a mother leaves her kids for three weeks to WRITE? Surely this is a joke! I'm selfish for being so excited. You know the drill, right? The lazy, bourgeois byzantine rambling thoughts of the morning hours. Then came three lacrosse games and a three hour drive back to Los Angeles.

Apparently, I actually did get a Hedgebrook Writing Residency. Holy mackerel! My gratitude knows no bounds, but holy moly! Thank you Hedgebrook!

Saturday, December 13, 2014

This is not a lacrosse blog

This time we're in San Diego, and Henry played two games of box lacrosse today. I know even less about box lacrosse than I do about regular lacrosse, but it looked as violent and crazy as ice hockey and the players had no pads. I took the photo above at the moment Henry crashed into the wall. Instead of screaming, I took a photo. Don't judge me -- for not screaming. I confess to actually enjoying the mayhem. Sometimes I find it hard to believe that this creature came out of my body sixteen years ago. Let's face it -- who your babies grow up to be is a damn mystery, and you can only watch it unfold, your heart pounding as they thud up against the glass, a tangle of sticks and grunts and blur, before they're gone.

Friday, December 12, 2014

It's HERE!

The 30:1 ratio cannabis product, now classified as hemp oil, is here. Hallelujah! We are, of course, hoping that with the higher ratio, Sophie will get back to better seizure control. In the meantime, I'm so thankful for Realm of Caring and so excited for the hundreds of families that are coming off the waiting list and that are able to try this product with their children with refractory epilepsy. May it work for them like it's worked for us.

Thursday, December 11, 2014

I'm a Flower of the Mountain but not The Sick Rose

A book that I was tempted to buy yesterday but didn't

It's 3:16 pm on the west coast, we're battening down the hatches in anticipation of some big rainstorm, and I've only been home for about an hour. The rest of the day was spent in my car, driving around the big shitty, dropping my children off and picking them up. When I got home I heated up some spinach artichoke dip that I found in the freezer (please don't judge) and scooped it up with tortilla chips. I'm also going to eat an apple and thereby avoid a heart attack (have you heard that eating an apple a day is as effective as taking a statin?). I am waiting for Sophie's bus to drop her off, when I would normally have to transfer her to my sexy white Mazda and head out for the Ventura Freeway to pick up Henry from track practice. Between bites of dip (don't judge me) and chips, and before the apple, though, I idly texted a friend and asked whether her son was staying late today and if so, could she pick up Henry as well and drive him home?

She said yes.

Her yes was equivalent to Molly Bloom's yes I said yes I will Yes. My overabundance of joy at not having to drag Sophie into the car and travel on the Ventura Freeway at rush hour, readers, might be difficult to understand, but trust me when I compare it to Molly and Leopold's rapture. It was that good.

...I was a Flower of the mountain yes when I put the rose in my hair like the Andalusian girls used or shall I wear a red yes and how he kissed me under the Moorish Wall and I thought well as well him as another and then I asked him with my eyes to ask again yes and then he asked me would I yes to say yes my mountain flower and first I put my arms around him yes and drew him down to me so he could feel my breasts all perfume yes and his heart was going like mad and yes I said yes I will Yes. 

James Joyce, Ulysses

Wednesday, December 10, 2014

My loud vernacular horn

My oldest Christmas ornament is an owl in a globe from 1971. In any given moment, my house, all decorated for the holidays, can look charming or like some hellish year-round Christmas shop.

I read a greeting card today that said, Any given moment you can change your life. You just have to be there.

I'm here.

So far, the places where some of my friends are going for Christmas are Hawaii, Cambodia, New York City, Park City, San Francisco, Mexico and Chicago. With the possible exception of Hawaii, I don't really envy anyone travelling during the holidays. When I feel a ping of jealousy that ratchets up to resentment, I read Billy Collins' poem Consolation. That might be because we've got Sophie to contend with, and the thought of travel anywhere without her is way more difficult than travel with her. Does that make sense?

My sisters and their families are going to my parents' house in Atlanta.   One of my sisters asked whether I was sad about not being able to go "home" for Christmas, and I didn't quite know how to answer that. I think the place that used to be sad is now numb. I guess I'm sad that our family can never pick up and go anywhere, to tell you the truth, and even if we were willing to suspend what remnants of sanity we have left and take Sophie on a cross-country trip, it'd be illegal to take her medicine to Georgia. And I don't wish that I lived closer to home because that would mean -- well -- Georgia. In an ideal world, Sophie would still be who she is, difficult to travel with, but everyone would come here to see us.

So, while I'm sure I'll miss a good time with the relatives, I love a Christmas in my own sometimes charming and sometimes hellish Christmas-shop home.

How much better to command the modern precinct of home
than to be dwarfed by pillar, arch and basilica.

Like Virginia Woolfe said, nothing thicker than a knife's blade separates happiness from melancholy.

Tuesday, December 9, 2014

Poetry and Torture

The coward wretch whose hand and heart Can bear to torture aught below, Is ever first to quail and start From the slightest pain or equal foe.
Bertrand Russell 
I pulled into the donut/bagel store parking lot late this morning, whimpering. I had just listened to a bit of the reports about the torture papers that were released today, and when they spoke about rectal feeding, I turned the radio off and lay my head on the steering wheel.

We're even now reckoning with this? There's an argument? I wrote this post nearly six years ago, and here we are.

If you're a person who believes that the institution of torture is a necessary evil, that it's justified to secure liberties, the American way of life, American lives, your way of life or your life, be gone. I don't think I even want your energy breathing in this space. The rest of us Americans need to figure out how to live forward.


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