Citizen's Arrest!

I'm not sure I've complained here on the old a moon, worn as if it had been a shell about the McMansions going up in my neighborhood. What happens is that one day you wake up to hear enormous groaning sounds and crashes, look out your back door and see an 80-year old perfectly respectable cottage flattened. This can happen in under two hours, as can the knocking down of equally as old and perfectly healthy sycamore trees. What goes up in their place are gigantic modern dwellings that might fit into a wooded landscape but look preposterous on the postage stamp lots. The fact that these McMansions dwarf the houses around them, have balconies that allow the owners to peer down into our humble backyards and not onto sweeping ocean vistas or have interiors that quite emphatically mimic Ikea display rooms doesn't prevent people from coming in and spending upwards of $2.9 million on them. There's one going up just behind my house right this very moment, and nearly every morning when I open the back door to let my dog out, I am literally assailed by the sounds of the workers' music. They play the music loud enough to muffle the sounds of their drills and hammers and all manner of construction noise, so you can imagine how loud that must be. I have a neighbor who lives right next door to them who has three little children, one a baby not a year old. We have commiserated over the music for months. No stranger to discrimination, as an Orthodox Jew she was very sensitive to what she called the workers' culture and felt uncomfortable asking them to turn down their -- I'll be blunt -- mariachi music. Let's face it. Most of the construction work in this city is done by men of Latin origin, and when they work these long, brutal hours putting up McMansions, they listen to Latin radio. I actually like mariachi music but not at 7:00 in the morning and onward for eight hours. If Bob Dylan, Van Morrison, Otis Redding and the Byrds were standing on the top floor playing music for eight hours, I'd probably go insane as well, but there's something particularly hellish for me about the incessant buoyancy and happiness of mariachi music untempered by, let's say, something mournful or blue.

Anyhoo.

Oliver has gone out with his megaphone and yelled at them to turn it down, to no avail. I've walked around the corner and given them my best uni-brow glare, but workers on McMansions could give a damn about women and their issues. I've thought about running around and doing what Gomer Pyle called a citizen's arrest*, but mostly I've just stewed in my own house.

This morning, I opened my bleary eyes to hear it reverberating even over the usual crows who cackle so loudly some mornings that I fantasize about shotguns. I emailed my neighbor with the subject line Have you made a pitcher of margaritas, yet? and she replied that she is thrilled to have my baby continue sleeping in a closet. Dark humor is the great uniter and binds me to people tighter even than blood. I imagine my neighbor and I, armed with shotguns, could bring down some crows and blow out some boomboxes as well. This morning, she gave me the number of a police officer in our neighborhood who she said is very personable and would respond if I called. It sounded very Andy Griffiithish (I mean, this is LA!), and I won't mince words but admit that I'm not exactly a law enforcement fan. There's something about all those mirrored sunglasses and the knee-high shiny black boots that give me the creeps, but I digress. I made the call.

Reader, Barney Fife (that's what I'll call him) told me he'd look into it and get back to me. An hour or so later, I realized that all I heard was the wind through the palms, the tinkle of the chimes on my porch and the chittering of the insane squirrels that romp on the wires that criss-cross the air. There might have been just the faintest sound of a leaf blower somewhere and the whir of a helicopter because it wouldn't be Los Angeles without that constant drone,but otherwise -- silence. And Officer Fife had actually left me a message that he'd stopped by and asked the workers to turn down or off their music.

Next thing you know, I'm going to be bringing brownies round to the police station and a pitcher of margaritas to the workers at the McMansion.






*Just in case you forgot about it:

An Access Public Service Announcement

Did you notice while watching the Dateline special Growing Hope on Sunday night that nearly every single commercial was for a pharmaceutical or for a pharmaceutical for your dog? Are you at all as bothered by the irony as I? I doubt anyone who wants to be relieved of their incontinence problems, their aching joints or their failure to maintain an erection has to beg their legislator to get relief.


I'm drawing up a few days' worth of Sophie's Charlotte's Web cannabis oil in the above photo. I told Oliver to hold that camera a little higher so you can't see any chins. You can see my Italian peasant woman arms, though, that soft and terribly strong part of my body that I defy anyone to put down as they've served me well as a mother for over twenty years. As you can see, I'm at the end of the bottle which means I can pick up the telephone or go online and order some more from Realm of Caring.

I have access to this lifesaving medication.

Thousands of families don't, though, and are either medical refugees or waiting to get access, at the mercy of politicians. I won't talk about doctors in this post, though, at least the misguided ones. Some people not only live in states without access to cannabis oils but also have doctors who stymie their desire to try it.

Sigh.

You can help. Go to The Coalition for Access Now. 

Bookworm Chronicles

In books we never find anything but ourselves. 

Strangely enough, that always gives us great pleasure,

and we say the author is a genius.

Thomas Mann

I just finished the new memoir by Joseph Luzzi, In a Dark Wood. Luzzi is an Italian professor at Bard who lost his wife in a terrible car accident. She was eight months pregnant with their first child when she was killed, but the baby was saved. Luzzi uses Dante's The Divine Comedy and other writing to frame his own grief and loss and emergence back into life. It's one of those books that I picked up because the cover design on the hardback is so spectacular and not because I'd heard about it or him. I saw the subtitle What Dante Taught Me About Grief, Healing and the Mysteries of Love and had to buy it. If you read that quote of Thomas Mann's above (thanks to my friend Liz for sending it to me), you'll know everything about my reaction to the book. 

I've got an embarrassing backlog of books going on over here. In addition to the ones you see in the photo above, I sent a big box to Hedgebrook ahead of me with the following titles inside:

Raising Demons and Life with Savages - both by Shirley Jackson

Hold Still: A Memoir with Photographs by Sally Mann

Being Human: Readings from the President's Council on Bioethics

Early Warning by Jane Smiley

A God in Ruins by Kate Atkinson

My Kindle (leaning against the books in the photo above) has the following titles waiting patiently to be read:

Alligator by Lisa Moore

The Sunken Cathedral by Kate Walbert

The Light of the World by Elizabeth Alexander

To Rise Again at a Decent Hour by Joshua Ferris

The Steady Running of the Hour by Justin Go

On Elizabeth Bishop by Colm Toibin

I've got plans to re-read some favorites, like To the Lighthouse by Virginia Woolfe, probably my most favorite novel of all time and, thankfully, shorter than my other favorite The Brothers Karamazov by Dostoyevsky which is too long to re-read at this point in my life. Maybe I'll look over The Grand Inquisitor section. I also packed some favorite poetry -- William Carlos Williams, Emily Dickinson and -- well -- I can't remember who else I tucked in with the novels and the rain boots (rain boots!) and the knitting (the sweater that I've been knitting for over three years). 

Can you even imagine being squirreled away for three weeks in a cottage with all the books you've wanted to read and all the time to write your heart and mind out, to finally finish the book you've been working on for ten years and begin to organize the one that's in your head? I could never have imagined this opportunity that's been granted to me, but it's about two weeks away from being a reality. 

Reader, what are you reading and planning to read this summer?

Setting fire to something*

What She Was Wearing

this is my suicide dress
she told him
I only wear it on days
when I'm afraid
I might kill myself
if I don't wear it

you've been wearing it
every day since we met he said

and these are my arson gloves

so you don't set fire to something?
he asked

exactly

and this is my terrorism lipstick
my assault and battery eyeliner
my armed robbery boots

I'd like to undress you he said
but would that make me an accomplice?

and today she said I'm wearing
my infidelity underwear
so don't get any ideas

and she put on her nervous breakdown hat
and walked out the door 

Denver Butson



*I've posted this poem before, maybe even several times. I find it nearly perfect in every way.

I Am Not A Placebo Effect

Am I willing to try something that the FDA hasn't approved

 and big Pharma doesn't control (yet)? 

You bet I am. 

You can also bet I'm not going to report it's working if it's not. 

You're not going to get away with insulting my ability to ascertain a reduction in seizures. 

" Mom reports" is not a phrase worthy of eye- rolling. 

I know when I'm not seeing seizures. 

You KNOW that!

Mary Lou Connelly at Carpe Diem

I'm not done chastising Dr. Amy Brooks-Kayal and her ridiculous statements made throughout the Dateline special Raising Hope that we all watched last night. I've been mulling over them all day, to tell you the truth, especially while pushing my daughter in her wheelchair through the leafy streets of my neighborhood. We cut a tiny amount of Sophie's Onfi about three weeks ago, and just as it's happened every time we've weaned, she's experiencing some dreadful side effects. These include agitation, discomfort and excessive drooling. She has a tremor and some weakness, as well as what I call withdrawal seizures. 

I almost don't want to repeat a couple of Brooks-Kayal's statements because they were so -- let's call a spade a spade -- stupid. Beyond the usual call for more research (which we all want and which wouldn't be going on at all if a shitload of parents hadn't initiated this whole thing), she made some patently false claims about the Powers That Be concerns. She wondered what if it helps the seizures but makes your life worse? Even allowing for bad television editing, that was a loaded sentence that makes a mockery of the suffering our children have endured. She dismissed anecdote quite smugly and spoke of the placebo effect. My regular readers might remember that this line of smuggery was directed at me when I participated on a cannabis panel at the Epilepsy Foundation's Brain Summit a couple of months ago. I imagine that some of you might have thought that my emotions ran high, that a lot of our objections are knee-jerk ones. Surely these people aren't that arrogant? you might have thought. I'm secretly glad that Brooks-Kayal said what she said last night because it affirms what many of the people involved in this fight have experienced. These people really do think these things or they are, at the very least, spouting a party line.

Read the post that I quoted from above, written by my friend Mary Lou Connelly. She has a 30 year old son who has had refractory epilepsy for most of his life and who currently benefits from cannabis.

Another friend emailed me the following comment in response to my earlier post and after she herself viewed the Dateline special. She was puzzled by the doctor's comment about the placebo effect:

The way it was employed is sort of a misnomer. Placebo effect would mean
the seizures stop because of belief in a substance. Which would be pretty
impressive and hopeful and something to explore. (Is most certainly something very
under-explored in general.) But what is really being said is that parents' observations are inaccurate. Researchers' observations can be biased as well, obviously --- hence double blind
studies. But the adversarial rhetoric of this sort is absurd, because any drug that is used off-label,
and there are lots of them, is used on the basis of reported experiences, AKA anecdotal.
Neither placebo nor anecdotal should be used as pejoratives. It's all information.

I couldn't have said that better myself. 

Out of the 20 drugs that Sophie has been on in her twenty years, more than three-quarters of them were used off-label. During the hundreds of visits I've made to our neurologists' offices over the years, I've "reported" how things were going. The doctors have always studiously taken notes. I tell you what. It's becoming more and more difficult to take any of these people seriously. Dr. Brooks-Kayal is the head of the American Epilepsy Society, an extremely influential organization. Because I'm a woman with a tiny little mother mind,™ I'm going to throw out the words Big Pharma, Medical/Industrial complex, money, money and more money and just -- well -- wonder.*

*And those of you who like myself don't watch much commercial television were probably bowled over by the amount of commercials that ran during the program and their length. Nearly every single commercial was for a pharmaceutical, including a drug for your dog. It's enough to make you want to go off-grid.

My NBC Dateline Notes and the Ode to Santos Dumont

Sophie at the late Chris Burden's Ode to Santos Dumont

First, and above all, how rocking cool are those Stanley Brothers? I know it's heretical, especially given their evangelical roots, but honestly, I'd be tempted to follow Jesus and the Apostles again if he were Joel Stanley and his band of brothers. That awesome female biochemist could be Mary to my Magdalene, too.

Secondly, how strong and rocking cool is that Paige Figi? And those women who lobbied the Virginia legislature? And their beautiful kids, the brave soldier with PTSD, the man with multiple sclerosis who threw his bag o'pharms on the floor?

You watched it, didn't you? If you missed the Dateline special, Growing Hope, you can still help out by supporting the Coalition for Access Now. Click on that link, and you'll be able to access your own legislators' emails and telephone numbers to express your support. I myself have just returned to the lobbying efforts. I had a hiatus, mainly because I despise lobbying and fundraising. It's very difficult for me to plead legislators to do the obvious. Unlike Paige and the women profiled on the show, I get stuck and fixate on -- well, for instance,  -- what appeared to be an entire Virginia legislature of white men in suits. Those guys did the right thing, but it's so hard that we have to literally beg for this stuff.

Sigh.

I'm girding my loins and calling the very estimable Senator Feinstein on Monday morning. She's decidedly not a white man in a suit, but she's said some worrisome things, and we need to tell her what we know. We need to share our stories. We need to plead with her. We want her to co-sponsor the Therapeutic Hemp Medical Access Act of 2015 (S.1333). Anybody out there who has an in to her office in Los Angeles or San Francisco? Please email me if you do.

Now let's talk about the proverbial thorns in the sides.

Thorn Number One in the Dateline special might be Dr. Amy Brooks Kayal. She's an epileptologist and the present head of the influential American Epilepsy Society. I recently read a letter she wrote to the governor of Pennsylvania, expressing her displeasure over any legislation favoring the legalization of CBD. At some point in the special tonight, she pointed out that parents are subject to the placebo effect and might be over-stating their children's response to Charlotte's Web. You might remember the doc at the Epilepsy Brain Summit that I sparred with said the exact same thing.

It's the Party Line.

I did the same thing that Mrs. Braddock did when Benjamin announced his marriage to Elaine.

The placebo effect argument drives me insane. I understand the power of the placebo effect, and I also find it interesting that the families who uproot themselves and move to states where cannabis is legal reportedly claim more success, but I question that research itself. Has anyone at the University of Southern California Neurology Department, other than my own wonderful neurologist, ever expressed any curiosity about the awesome success Sophie's had with CBD? Have they at UCLA where Sophie was treated for many years? Do they want to know? Has anyone done a study on revolutionary treatments and doctors' stubborn refusal to acknowledge change? When these doctors bring up the placebo effect, it stinks of patronization. I think of deer caught in headlights or steady blinking in the face of light. 

They're not used to light. Bless their hearts.

Later, I engaged a bit with some other thorns -- those whoo I guess are called "haters" in the medical marijuana community. These people are, ironically, in the community in that they have loved ones who benefit from marijuana, but they consistently put down the Stanley Brothers, Realm of Caring and Paige Figi. Their concern is that CBD-only legislation will hurt the larger cause of making whole plant marijuana legal. They have some valid points, but they're often strident and make wild accusations. I know they're wrong. Just two years ago, I was wandering around Los Angeles looking for a product to give Sophie here in Los Angeles. We're now about to push through, hopefully, a bill in the federal government that will deschedule hemp, making it accessible to every citizen in every state, regardless of that state's marijuana laws. It's a small step, and it doesn't solve the larger problem of making sure that accessible natural plant medicine, including THC, is available to everyone who needs it. Cannabidiol alone is not a cure for everyone. There is much tweaking, and some people only see success when they add in THC and/or THCa. Some people are on so many antiepileptic drugs that success is elusive. It doesn't work for everyone, but there are thousands of children who need to try the product right now, who literally can't wait for what I believe will be the eventual legalization of marijuana on the federal level.

Enough thorns.

Today, I took Sophie over to LACMA to see the late Chris Burden's installation titled Ode to Santos Dumont. The museum states that the installation pays homage to ingenuity, optimism, and the persistence of experimentation, failure, and innovation. Inspired by Brazilian-born pioneer aviator Alberto Santos-Dumont, widely considered the father of aviation in France, the kinetic airship sculpture was recently completed after a decade of research and work by Burden.

It's a strange and wonderful installation -- a sort of translucent dirigible that is put into motion in some complicated way and then floats around the room for a bit in a constant sixty-foot circle. Sophie and I stood with a crowd of people and watched the beautiful thing float around and around. We were all mesmerized. The explanation on the wall states that if the airship were to deviate from its sity-foot circle, the geometry of the tethers would force the balloon to turn in a smaller, tighter circle, which would cause the motor to work harder. The thing always seeks the sixty-foot circle, the path of least resistance or the sweet spot. 

How beautiful and resonant the Ode to Santos Dumont with Sophie, to this work we have ahead. 

May we all find the sweet spot.

Coalition for Access Now.

Don't Forget to Watch Dateline Tonight!

Some of the incredible team working on the Dateline documentary (photo from Paige Figi's FB page!)

Don't forget to watch NBC's Dateline tonight. The special is called GROWING HOPE.

Don't forget to TAKE ACTION!

Coalition for Access Now

Complacencies of the Peignoir*

Enter the Mermaid Room

Instead of around the neck, drape scarves over doorway stains.



I lay in bed this morning, casual. When she screamed a thin, long nearly ecstatic sound, I knew it was a seizure. You know what we do. Later, I told a friend, and she asked whether I was scared. No, I said, I am hard and resigned.








While listening to another person (not Lou) sing take a walk on the wild side, sit at a light in Silver Lake and look forward. A flock of birds flies over, maybe 50 of them, their wings casting shadows. They circle and swoop. A convention that settles on a wire. Birds on a wire. Why? Is their path ordained or are they, pardon the pun, just winging it?





Too Many Birds






The Everyday Enchantment of Music

A rough sound was polished until it became a smoother sound,
which was polished until it became music. Then the music was
polished until it became the memory of a night in Venice when
tears of the sea fell from the Bridge of Sighs, which in turn was
polished until it ceased to be and in its place stood the empty
home of a heart in trouble. Then suddenly there was sun and the
music came back and traffic was moving and off in the distance, at
the edge of the city, a long line of clouds appeared, and there was
thunder, which, however menacing, would become music, and the
memory of what happened after Venice would begin, and what
happened after the home of the troubled heart broke in two would
also begin.

Mark Strand












*One of my favorite phrases, from the poem Sunday Morning by Wallace Stevens

Not a Saturday Morning Three-Line Movie Review and More On Being

I woke up this morning to two emails from two different friends, congratulating me on being highlighted in the weekly newsletter of On Being. That beautiful website posted my writing last week, seemingly out of the blue, and I am both overwhelmed and terribly honored to have been highlighted, too!

On another note, I had planned on doing a Saturday Three-Line Movie Review but will need far more lines to explain what happened to me the other night. Here goes.

I drove Oliver and his friend to the Dodgers game on Thursday night with a plan to drop them off and then go see the documentary Iris. We got a late start, though, and spent nearly an hour in the car trying to get there, so I couldn't make the movie after I'd dropped them off. I decided to drive to the nearest movie theater and just take my chances on whatever was showing at an appropriate time which happened to be Tomorrowland. Despite it being only PG which indicated perhaps more light fare than I was in the mood, and the fact that it was a Disney flick and I'm not a Disney person, it starred George Clooney whom I adore, so I bought a ticket. I also bought a chicken apple sausage with spicy mustard, a small popcorn (not buttered) and an iced-tea. Between the ticket and the food, I was out $32, but there's really nothing I like more than being at a movie, so I went in and began watching. Did I mention that because I've bought so many tickets at this particular movie theater, I received a free small container of those little ice-cream nuggets, too?

Reader, I ate the hot dog, the popcorn and the ice-cream nuggets in the first twenty minutes of the movie and then decided it was excruciatingly boring. I don't like science fiction or kid movies, to tell you the truth, which makes me not such a good person (so much for the On Being recognition!). I stood up and made my way out of the theater, glanced right and left to see whether there were any employees lurking about and then darted into the movie across the hallway, Entourage. I am not a person who ever did "bad" things, like sneaking into R movies when I was under-age or shoplifting or the like. I won't claim any kind of moral authority because the reason why I was always so "good" was because I didn't want to get caught. On top of that, I never did drugs or drank excessively -- not because I was morally above it all -- but rather because I was certain I'd be the person who died. I didn't have sex with my boyfriend in high school but not because I was saving myself for a husband or because I believed premarital sex was wrong. I didn't do it because I was too afraid of getting pregnant. My plan if such a thing happened (even though I wasn't having sex!) was to kill myself. I'm serious when I tell you that the only times I've gotten in trouble were when I was in a sky bucket with some other eighth graders at Six Flags Over Georgia, and one kid threw a cup of soda over and it landed on someone down below. Six Flags security met us at the end of the line and threw us out of the park. I was mortified. The other time was when I drove in a car with a bunch of kids up to North Carolina for what was known as The Ecology Club Ski Trip, and one boy went into a 7-11 and bought a trunkload of Coors beer (which at the time was only available in North Carolina and all the rage to folks in Georgia). Our car was promptly pulled over, and we were all taken to a small sheriff's station and questioned. I was beside myself and not just because the sheriff who questioned me was a sort of squeal like a pig Deliverance redneck who was eating a Spam sandwich and said to me, How'd you like a bite of my Spam sandwich, brown eyes? I was beside myself because I thought they'd tell my parents.

Anyhoo. Where was I?

So, I've slipped in the movie Entourage, found a seat and start watching. About five minutes in, I realize that this movie is dreadful, even more dreadful than the series and that I must leave. I get up and walk out and into another movie. The movie is Mad Max which I had no intention of watching given the violence, but because there's been so much hoopla around it and claims that it's brutal but feminist and beautiful to boot, I thought I'd give it a try.

It was 3-D.

Have I ever told you how much I hate 3-D movies? Getting glasses involved me going to the usher and claiming that I'd forgotten to pick up the glasses which involved lying about the ticket. I did it, though, and crawled back to my seat and began watching. I lasted about five minutes, though, before I realized that my glasses were broken. I think I realized this at the same time as about twenty other people who all began making their way down the stairs to the usher. We all stood in a clump while the usher walkie-talkied her co-workers, requesting new glasses. People were very upset because the movie was still going on, and we were missing it. I kept silent because -- well -- it seemed presumptuous of me to complain, right? Minutes ticked by and still no glasses, so the usher told us we could get a refund. I slipped out and went downstairs to get my refund. The lady asked me for proof of ticket purchase. Oh dear Lord, you're thinking. See? I was going to get caught. 

Instead I lied some more. I told her that I'd left my ticket in the theater and couldn't possibly crawl down the aisle and find it, especially given that my 3-D glasses were broken and had already twenty minutes of that fabulous movie! I was righteous! Without proof (I must have been sweating or had the tell-tale sign of criminality), the lady gave me a ticket to use at a future date rather than cash. I made a beeline out of the theater, paid $8.00 for parking because I couldn't possibly go back inside and get my ticket validated and then drove aimlessly around the shitty for about an hour before finally going home.

I had driven in Los Angeles rush hour traffic to Dodger Stadium and back, watched fifteen minutes of three different movies, eaten really bad food, compromised my morality and was out $40.

Reader, I suppose I could have written a Three Line Three Movie Review, but this was more fun wasn't it?

One Telephone Call: A Plea for Help

So, I had the great pleasure last night of texting and private-messaging with my friend Paige Figi, the mother of Charlotte (Charlotte's Web fame) and agreed to help push on Senator Diane Feinstein to co-sponsor Senate Bill 1333, The Therapeutic Hemp Medical Access Act.

I am crazy, I know, to do anything else, but honestly how hard could it be, especially when I have all of you out there to help me. 

Here's what I want you to do.

1. Call Senator Feinstein's D.C. office when you have a moment today and ask her to co-sponsor the Therapeutic Hemp Medical Access Act or S. 1333. 
2. Here's the phone number: (202) 224-3841 Tell the person who answers that this bill will provide access to thousands of families who cannot get this life-saving treatment for their children. The bill will deschedule cannabis-rich products/hemp from Schedule 1. It's a tiny step forward and a HUGE one for our community. Senator Feinstein WANTS TO HEAR FROM HER CONSTITUENTS, SO PLEASE CALIFORNIANS, STEP UP!
3. Don't forget to ask Senator Feinstein to CO-SPONSOR S.1333.

If you need more information or would like to help get co-sponsors in your state, here's the website for Coalition for Access Now. 

The TLFWTSCEVATPITM* and Women's Suffrage

Alice Paul and the National Women's Party August 18, 1920

Congress passed the Nineteenth Amendment to the United States Constitution on June 4, 1919, guaranteeing all women the right to vote. My proposal for today is that instead of spending one split second of time talking or even thinking about the *Too-large Family with the Strident Christian Evangelical Views and Tortured Pedophiles in Their Midst or even wondering why the TLFWTSCEVATPITM is and has been interesting at all in these United States, we reflect upon the enormous legacy a generation or two of extremely bad-ass women bestowed on us. As my friend, the writer Lidia Yuknavitch said today,

hey you mammals that think your rights just appeared from the old man wizard in the sky or thin air: wake up and read history. you're standing on some bones that mattered.

Check these women out:

Lucretia Mott

Elizabeth Cady Stanton

Susan B. Anthony

Carrie Chapman Chatt

Lucy Burns

Dora Lewis

Alice Paul

Pauline Adams

Helena Hill Weed

Julia Ward Howe

Anticipate this:

Penultimate Day in Special Ed

Today was Sophie's second to last day of twelfth grade for the third year in a row. Oliver and I brought party sandwiches and chips to celebrate.  I imagine those of you who don't have children with differences might get a little nervous around a bunch of adults that are not the yoozsh. They talk in different tones, if they talk at all. They might screech hello! twenty times in a row when they see you. They might bump into things around you, including you. They ask the same questions over and over. Sara pulled out her cell phone and showed me a picture of Sophie and herself from about ten years ago.I'm not kidding you. Sara has Down Sydrome and the biggest smile you've ever seen. She also showed me a photo of one of her fourteen nieces and nephews. Sara is Orthodox and has a lot of brothers and sisters. I told her to say hello to her mother whom I haven't seen in years, and Sara beamed at me.

I don't visit Sophie's class that much anymore. I trust that the life she has there is a good one and that she is well taken care of by her spectacular aide and wonderful teacher. Many of the classmates have been in school together since they were five years old. Many of them know Oliver and look forward to seeing him a few times a year.

I'm biased, of course, but Oliver rocks.

The kids in Sophie's class are not scary. They are not to be pitied, nor are they placecards for your gratitude. None of that there but for the grace of God go I bullshit. It's not hard to reach out and recognize them as fully formed human beings with the exact same rights to live on the planet as you. Try it.

Otherwise, I might have to feel sorry for you and think, there but for the grace of God go I.

Man Feet

Edgar occasionally walked around the corner and let the Vietnamese women pummel and scrape his feet with their small hands. He was vain about his feet, admired their boniness, the slender toes. He thought of his uncle, the one who'd died over there, a mysterious embarrassment to the wife and children he'd left behind.  Today Edgar even asked for an additional woman. She took his hands in hers, lathered his arms with some seedy soap, his dark hairs a jungle of scrub.

Girding My Loins

Edwardian woman boxer found on the internets

I've got to gird my loins and get to The Latest Insurance Snafu. You might remember that Sophie had some routine bloodwork done a few months ago, not for the hell of it but per doctor's orders, and the insurance company only paid an infinitesimal amount despite it being an in-network provider. When I inquired, The Poor Person Who Has to Work the Phone at an Insurance Company did her clicking around and told me that the labwork was covered but venipuncture is not covered. I already wrote about this, I believe, so I won't belabor the point. I put it aside because, if you remember another post I wrote, my coping mechanism is to Do Only One Thing At A Time. Mulling or mewling or moping (not musing) about why poking Sophie's vein with a needle is not covered, although the actual blood analysis is covered was just too much that day for my tiny little mother mind,™ not to mention actually addressing the problem full-on which means calling the provider, telling her to correct the wrong diagnosis code or ask for a more specific diagnosis, use the numbers V72.6 instead of 82036, etc. etc. etc.  It's time to gird my loins and do it.

I've got some figurative or mental loin-girding going on as well these days as the end of the year at Sophie's public school wraps up. This is the third year that Sophie is considered a senior, I think, or someone has neglected to remove her from the school's graduating class rolls, so I'm subject to a daily and sometimes thrice-daily robo call letting me in on all the fun goings-on for graduates. To be fair, because of the public education laws, Sophie is allowed to stay in school until she's 22 years old, and my gratitude is nothing short of  all holds barred. What comes next will call for more than just the girding of the loins, but that's a story for -- well -- another day. In these parts, we take living in the present to the extreme.

Anyhoo.

Last night, the phone rang, and Oliver picked it up and put it directly on speaker so we could laugh ruefully about the message. This one gave a stern warning that all seniors were to clean out their lockers by no later than 10:00 this morning and that fun festivities were in order later in the day to honor the outgoing class. So far, Sophie should have picked up her cap and gown, cleaned out her locker, gathered with her classmates for a celebration and even checked out the ROTC recruiters in the parking lot with all their cheerful guidance toward a life of bravery, courage and sacrifice. Tonight, I told Oliver to please hang up the phone I don't want to hear it anymore. Oliver asked me whether it made me sad, and I said, yes sometimes it makes me really sad. We both agreed that it's weird to think of Sophie being almost the same age I was when I graduated from college this exact time of year.

Who knew that space cadet grad with thoughts of medieval French literature, modern poetry and a summer ahead of perhaps teaching English to Chinese students in Taiwan or staying with the love of her life in Chapel Hill was going to have to gird her proverbial loins to just make and listen to telephone calls in about thirty years?