Minds, Hearts and Sores

Santa Monica, March 2014

The mind creates the abyss, the heart crosses it.
Sri Nisargadatta

I'm sorry, I could never keep my fingers off a sore.
Maggie the Cat, Cat on a Hot Tin Roof


That quote by an Indian wiseman/swami came to me over the last couple of days as I drove about the shitty, and I couldn't remember why until I realized that I had posted it along with some meandering prose prompted by the last time I'd seen a Confederate flag flying. That was March of 2014, in Santa Monica, and here's the post that went with it. Go back and read it, and be sure not to miss the comments.

I don't know what else to think about, to tell you the truth. Both my boys have asked me what I think of the whole thing that happened in Charleston. They have the swagger of the teenager, the rebellious I hate this country, don't you? need for affirmation, and I just don't know what to say.

I don't have a title for this post

If you'll forgive the possibly distasteful metaphor, I feel as if I'm in an iron lung. I need air and movement. The interminable construction site that is my street and the surrounding area fills the air with whine and hum and hammering -- perhaps also a metaphor for my own complaining, So here's some gratitude: the only part of my garden that isn't dead and brown is the path leading to the side yard where we keep the garbage cans, and that little sliver is just gorgeous. Here's a photo, no filter:

Here's a close-up of the purple flowers on the left:

And that's bougainvillea that is squeezing through on the upper right -- no one planted it, but it's determined to flower there. I noticed yesterday as I drove through Beverly Hills that they'd finally stopped watering the median on Burton Way. It's a wide expanse of green flanked by some ultra fancy hotels and shops, and I always found it irritating to see sun-illuminated sprinklers watering at any time of the day. I guess the fancy folk have decided to join the hoi polloi and endure dead grass in the name of conservation. Hallelujah. I sure wish it'd rain. I wonder when the rain dances begin -- didn't Governor Rick Perry of Texas declare a state-wide Pray for Rain day? I'm in if it works, although I'd prefer some kind of dance, too.

What are you reading? I'm reading a very interesting and good novel by the English author Elizabeth Taylor. The book is called Angel, and is not just beautifully written but weird in just the right way. One of the friends I visited in Chicago the other weekend, probably one of the most well-read people I know, recommended it. I hadn't ever heard of that Elizabeth Taylor, and while this friend doesn't know me all that well, he apparently knows me well enough to have suggested something that I really, really like.

Evidently, I need air, movement and inspiration because this post is going nowhere. The only thing I can possibly say for it is that life here at a moon, worn as if it had been a shell is an ongoing conversation. I'd love to hear your thoughts. What are you reading? What are you listening to? Is it raining where you live? Every time you hear the word ISIS, do you think of on the fifth day of May, like I do?

Cat on a Hot Tin Roof That Jack Built, Part Three***

There's the house that Jack built that consists of these inane back and forths with the company that is going to administer the EEG, Sophie's doctor and the insurance company. There's also another house that Jack is building that consists of inane back and forths with the company that is going to provide the wheelchair for Sophie, Sophie's doctor, the insurance company, California Children's Services and Medi-Cal. And today, to top it all off, I got an email from Sophie's service coordinator at the Regional Center (unique to California) asking me to account for the 14 hours a month of respite that we are allotted at a little more than $9.00 an hour, as well as how it fits in with her IHSS hours and her daily activities. I was asked to fill out a weekly schedule, hour by hour, of Sophie's day -- for 24 hours. She attached an excel sheet as an example of what she expected me to do. Please note that I keep careful records, as I'm supposed to do, for all the funding that Sophie gets. I fill out timecards, scan them and send them in when I'm supposed to as well. And if you're a newbie to the houses that Jack builds, these particular services are wonderful -- and entirely necessary,as I'd really, really go insane if I didn't have them. The ultimate purpose is to enable me to stay at home with Sophie and to enable Sophie to stay at home instead of surrendering her care to the state -- or one of the other houses that Jack has built. I will add that any doubters might consider my own tax-paying ability, my own relinquished career dreams, my literal ability to have a full-time job and remain flexible to care for Sophie daily -- and deal with all of this bullshit, too.

I understand the necessity of weeding out the bilkers, the cheats, those who are eating bonbons or even those who are very wealthy yet still claim benefits. But Sweet Jesus God and Good Lord and Dear Lord Almighty and Help me, Rhonda.

I forwarded the email to my friend and comrade S in New York City whose caregiving duties would curl the tiny little hairs on your toes if I told you about some of them, and she of the insane sense of humor quickly sent this back -- probably while she was on hold with the New York City transit system or one of the many nursing agencies that she deals with daily. Her suggestions on how I should respond to the caseworker's request made me laugh out loud and cry a little, to tell you the truth, in gratitude for what saves me in the end: laughter and friendship. The only thing I've changed is the name of my "caseworker." Let's call her Joan.

Dear Joan,

I spend those hours in passionate rapture with Javier Bardem. Do you need more precise details than that?

Love, Elizabeth

Dear Joan,

I spend those hours eating spaghetti. With clam sauce. I can send the recipe if necessary.

Love, Elizabeth

Dear Joan,

I spend those hours crying. Would you like me to account for the number of tears, Kleenex used, and times I blew my nose? Please advise.

Love, Elizabeth

Dear Joan,

I spend those hours writing little ditties about the insanity of it all. My next song is actually dedicated to you.

Love, Elizabeth

***Long time readers of a moon, worn as if it had been a shell, might have noticed that I post the above photo quite a bit on this blog. Elizabeth Taylor's Maggie the Cat, particularly in that photo, captures all of the languour and attitude and sexiness that reside within me, that apparently the Powers That Be are determined to extinguish in their belief that my life consists of lounging in a doorway in my slip, a bottle of alcohol just out of sight along with Paul Newman languishing on a bed with his broken leg, not to mention Richard Burton off-set with some new jewelry.  I hope that if I keep calling her up and posting her picture, I might not lose sight of that.

The Taming of the Shrew

This happened, yesterday:

And then this,

And finally, this:

They disappeared, which was excellent as I had driven them out of the house and off their electronics with shrewish shrieks. Stop fighting! Go outside! You mean to tell me that you can't figure out anything to do but play with that crap?

You fish-wives know the drill:

To the boys' credit, they picked up a ramp lying in an alley near our house, brought it home and rigged a go-kart on a skateboard. Henry amiably pushed Oliver who actually wore a helmet, and then -- lo and behold -- they put their two heads (knuckle generally comes to mind) and plotted out a real Go-Kart plan, one that will use their own money. Wheels are involved as is paint and wood and numerous trips to the newly opened OSH around the corner.

I feel triumphant. Less like the fishwife shrew and more like I've been tamed -- albeit Liz Taylor-style.

Imagine That

Elizabeth Taylor as Maggie the Cat in "Cat on a Hot Tin Roof"

I know ya'll think of me as the Ellen Burstyn character in Requiem for a Dream, but what if I told you to imagine me as Elizabeth Taylor in Maggie the Cat's white slip, languorously standing in the doorway of my bedroom, come hither --

Do you know that the Powers That Be called this morning and cancelled the NEUROLOGICAL appointment? They acknowledged that they had gotten sufficient information from The Neurologist (Sophie's regular one) that I had directed them to call when in my former Ellen Burstyn mode and had decided that yes, indeed, Sophie was sufficiently disabled to warrant continued SSI.

Imagine that, my friend Jenni texted me earlier when I told her.

Yes, imagine that!

Thank the animal gods, thank the universe, thank my lucky stars, the good Lord, Jesus Christ, Allah, Muhammad, the Buddha, and Ellen Burstyn.

Thank Elizabeth Taylor for giving me an out.

Let's call it a day

Henry, Me and Sophie, 2001

The reason why I posted this photo is that it makes me happy. It's been a wildly interesting week, albeit draining. Not only did I get engaged in a discussion with a twenty-five year old on Huffpost over cognitively disabled individuals and whether or not they are persons, human or non-person humans, but on Facebook I also fell into the Trap That Leads Nowhere of debating the traditional western scientific model versus integrative care that has worked for our family. The latter discussion was actually good-natured (although it pained me to have to interact at one point with Vaccination Militant Paul Offitt) -- and I learned something, too, given another physician's sensitive responses. The one with the Woman Whose Only Credentials for Debate on Disabled Individuals Are An Undergraduate Degree in Philosophy/Bioethics and Being the Mother of One Two Year Old was almost nauseating at first and when all is said and done, I've relegated her comments to the dustbin, coming from someone either truly evil (superstition) or sociopathic in the vein of Nazis, racists and the like. The Facebook discussion and the Huffpost back and forth were neatly tied up by the doctor I was talking to on Facebook when I told him that I'd been engaged in a far more upsetting discussion about humans, persons, and nonhuman persons or nonperson humans. His response was Tell her you need to read her thesis in the original 1930s German before you can comment further. I checked LIKE on that and moved on. Gretchen, my real-life friend and fellow blogger commented on one of my posts with a quote of Elizabeth Taylor's character in Cat on a Hot Tin Roof:  I'm sorry. I could never keep my fingers off a sore. Don't you love that? I'm always going to be one who fingers the sores, opens my mouth and types furiously. But I'm also going to be one who says, you're right, I'm sorry or Thank you for opening my tiny, little mind. It makes me want to post a photo of the inimitable Liz as Maggie: 

So, yes -- back to the interesting albeit draining week. On Tuesday night, I drained my car's battery at the lacrosse field where I idiotically kept the ignition on for over two hours, charging my phone and reading while both boys practiced. On Wednesday, I went to our huge local outdoor mall to return some jeans that I'd bought for Oliver that he had determined were "uncool," and since I was talking on the phone (speaker) while looking for a parking space, parking and then walking to the Gap, I had absolutely NO IDEA where my car was parked. I walked up and down the aisles of three different levels of the lot, pressing my automatic lock thingamajig. Did you know that they beep through several floors? I finally found my car, but not before I had shed a few tears and wet my pants a tiny bit. I'm not kidding. And then, on the way out, when I fed my parking ticket into the little machine, followed by my credit card to pay the $3.00 charge, the machine spit my card out and it fell onto the floor. I was in one of those unattended lines, people were honking in line behind me, and I couldn't open the car door to retrieve my car because I was so close to the machine. Eventually, an attendant came to my rescue and while kind, he couldn't speak English so didn't understand that my card was under my car, had fallen and couldn't get up. He eventually understood, gave me my card and I scratched off, but I wet my pants a tiny bit more. I am not kidding.

So, the photo makes me happy because I love how happy I look. I am pregnant with Oliver in the shot; our family would soon become complete; I had no knowledge of the internet and still wore a beeper, carried cash and had no friends on Facebook.