Monday, March 31, 2014
I am bewitched.
Clear bubbles with a dark veil, he wrote, in so many words.
After this morning's perusal, I'm avoiding the news. I had read about drought, California's drought, the worst in 500 years, they said. Plant a garden, they warned. Grow your own food. I read about wicked suburban moms in Boston and unconscious coupling and nodded off while doing so almost impaling myself on the scythe in my hand. That's what boredom does to you. I read about the obduracy of Catholics, their continued subterfuge. I ranted about the inadequacies of Catholic education to my son. He attends a Catholic school. It's killing your soul, I responded to a multiple choice test. You're learning to regurgitate and nothing else! He argued with me. I said Well then, just do it. Annotate the goddamn Hemingway. Grab the bull by his horn, wave your red flag or be gored. Catholic education: rigorous, structured, devoid of inspiration except for the nod to tradition and beautiful rituals, consigned to monks in robes and pointy hats, their heads bowed, their long tapered fingers running down an illuminated manuscript and a boy's spine.
I fear the mixed metaphor.
I told my friend that we should be heedless of the dire.
Sunday, March 30, 2014
Last night, I went to see a show at The Comedy Room in West Hollywood. My friend Andy was the headliner, along with Kevin Smith. The show started at 11:00. That's pm, Readers. I sat on a black vinyl couch in a dingy old room next to a friend who sat where Frank Sinatra evidently used to sit, back in the day. I pretended to be Ava Gardner but then remembered that old blue eyes beat her up a lot, so I went back to being me, the me that loves my friend Andy's comedy. Kevin and Andy do a podcast called Edumacation, and it's part Science (Andy is one of the smartest people I know) and part Raunch (Kevin) and part Sweet (both Kevin and Andy) and all Funny. The Comedy Club is the kind of place with a two-drink minimum, and the last time I've been in a place like that it might have been the twentieth century. I ordered a bourbon on the rocks and sipped that until midnight when I switched to Diet Coke. The night was raucous, and I laughed and carried on like I was twenty-five instead of fifty. Let's not fool ourselves, though. I got home at 2:30 in the morning, and despite only having that one bourbon, when I woke at 8, I felt ooooooooooooold.
The Big O was born in the 21st century and knows how to make lemonade and sell it. That's what he did all day, clearing another $100.
The Teenager made a few glamorous appearances in between throwing the lacrosse ball against the side of the house and video games in his room.
Reader, what sort of things did you do?
Saturday, March 29, 2014
|Display at the Arclight, Los Angeles, CA|
Watching Wes Anderson's The Grand Budapest Hotel was like listening to a bedtime story told by a group of men I adore while tripping on mushrooms (the only drug I can honestly say that the two times I tried it were about as good as it gets) without a hangover and a tray full of beautiful pastries right beside my bed. The movie was as visually beautiful as you could possibly imagine (the pinks! the blues!) and as zany as a Wes Anderson movie can be, and while there were moments where I wondered what the hell, everything worked with a near-Felliniesque aplomb. Oh, and Ralph Fiennes -- Rafe, Rafe, Rafe, je t'adore.
***The photo is of a display in the theater's lobby and is the original model created by the art team. One of the many reasons that I love this nutball city is that we get to see things like this at 11:30 on a Friday morning.
Other 3-Line Movie Reviews:
Friday, March 28, 2014
There's lavender through rusted iron. The smell goes to my head even as that cold coil is pressed to my ear, your voice low. Languor is the word I meant -- words are seductive to those who live in them.
When with the skin you do acknowledge drought,
The dry in the voice, the lightness of feet, the fine
Flake of the heat at every level line;
When with the hand you learn to touch without
Surprise the spine for the leaf, the prickled petal,
The stone scorched in the shine, and the wood brittle;
Then where the pipe drips and the fronds sprout
And the foot-square forest of clover blooms in sand,
You will lean and watch, but never touch with your hand.
Josephine Miles (1911-1985)
via Poetry, June 2012
Thursday, March 27, 2014
I dress her in gray and black leopard spots, a black turtleneck, the thin cotton scarf at her neck a modern geometric. A thin veil over a deep weariness. The light in her eyes is either a reflection or the sun itself is a reflection. It was supposed to rain, I thought as I loosened the tongue (my own) and laced her shoes. It's a mosh of a life, too. Last night's this morning I dreamt I pushed through a door as tall and wide as a life and opened into a valley, a path of stones (cobble, I read yesterday in a book) along a rushing stream, snow on mountains in the distance (a Parrish painting I referred to the other day, the light). Lightly I ran, like a child a woman child over the cobbles while the water burbled and fish uncurled, swam orange like threads, those threads in the brain that I try to reel in, do fish ever stand still? I wasn't running away but toward and I nearly forgot to notice the sun going down, the end of light until it happened and then there were more cobbles and then stairs going up, the other side, another door at the top, tall and wide as the first. Would I know how to turn on the light? A switch, an explosion of light. I conjured this life, this dream, these leopard spots, this pink and blue geometry, the sun, the thin veil, the deep weariness, this thin, curled girl.
Wednesday, March 26, 2014
Despite the glorious blustery day, I'm a tad melancholy. My friend Sarah left this afternoon, and I was sad to see her go. We went to college for four years in Chapel Hill, North Carolina and have probably only seen one another five times since we graduated in 1985, but all those years melted away this past week as she accompanied me around Los Angeles in my normal daily routines. We just as well could have been lying on our respective beds doing homework or leaning in together as we walked down a path to a class or quizzing each other on French idiomatic expressions before an exam. I am struck by how essential old friends, true, deep friends are to me -- there's something so profound and comforting about talking to a person whom I knew and who knew me before the me that is now. I loved the Sarah I knew thirty plus years ago, and I love the woman she's become and am grateful to have had these days with her.
A good friend sent me the following short essay written by Dylan, an 11 year old girl whose 8 year old brother has autism. The essay accompanies an appeal for donations to the upcoming Autism Speaks walk in Los Angeles. Siblings of those with autism and other developmental disabilities are sometimes lost in the shuffle for obvious reasons. Statistics indicate higher rates of depression, anxiety and other mental health issues for siblings of the disabled, too. It's something most of us who extreme parent are painfully conscious of, I'd venture to say, every single moment. Those of us who parent "typical" children are often told that they will grow up to be more compassionate because of the relationship, and while I find this somewhat comforting, I subscribe more to the who the hell knows how we all turn out mode of thinking. That being said, I found Dylan's essay so profound, moving and authentic that I asked whether I could share it here. This is an extraordinary child, a sibling of another extraordinary child.
My little brother is autistic. It doesn't bother me much. He's different, but in a way, just the same. I don't ever find myself wishing he wan't who he was. I would not be myself if he was someone else. My parents say they were devastated when they were told that he was autistic. I most likely wondered why they were crying. What about this was bad? Of course, I was too young to understand. I didn't notice he acted somewhat different than others until I got older. One way I could tell was because some people stared at him, or gave him strange, sometimes rude looks, and some people still do. Not many understand. Luckily, my friends have accepted his differences, and are able to have nice conversations with him, despite his disabilities.
We like to play together, my brother and I. Sometimes tag, hop-scotch, hide-and-go-seek, or any game that siblings enjoy. We have a great time. It is within these moments that I realize: he is not at all different from anybody else in the world. There are many stereotypes that claim that anybody who is different is bad. Back in ancient Greece, the government would leave children who were weak or different out far away to die. It is not only wrong that different is bad, but the way they are using the word "different" is wrong, too. Technically, nobody is exactly the same. There is no "normal" human being. Everyone is different.
There are some things about him that annoy me, some things that make me laugh my guts out, and some things that just blow my mind away. It's annoying when he throws tantrums (which is rather often), and when he hums and moans for no reason. Well, maybe, there is a reason, just one that none of us know of or think is particularly important. It's also not that pleasant when he breaks things. I feel like he only ruins my stuff, but I'm sure I'm wrong. And when he pauses and rewinds movies when I'm trying to watch. But, it is very funny when he sometimes says sentences or words incorrectly. "Come for here," or "I was born until 2005." "Yesterday, for longer time ago," means a while ago, or sometime in the past. Every once-in-a-while, he'll say to us, "What the fu-heck?" He used to call the ocean the "ochin", and tells my pregnant aunt, "You have a full tummy." His enthusiasm is hilarious, too. It's like putting a thousand exclamation marks after a sentence. Even though it makes me angry, it cracks me up when he scolds me. "If you don't do homework, you get no [devices], Dyl-wan." I keep telling him he's not in charge, but I don't think he will ever stop scolding me. His memory is amazing. He can easily memorize addresses. If he ever doesn't remember, he'll ask, "What's that's number for?" Dates are also very easy for him to remember. His drawing skills are definitely incredible.
If a cure for autism was ever created, I would refuse our offer. My brother is the best brother anyone could ever ask for. I would never change him for the world, but I know I will change the world for him.
If you would like to join us on walk day, please click the link below and search for Team Bachman:
Tuesday, March 25, 2014
That lovely lady is one of my oldest friends, Sarah, who has lived in Paris (yes, that Paris) for the last 25 years with her Parisian husband and their three children. She is visiting California this week and stopped to stay with us for three days. One of the reasons I haven't been around to visit your blogs or even to update mine is because Sarah and I can talk for hours. Hours and hours and hours. The only way we break up the talk is by laughing at something we're talking about. Right now, I've snuck away for a moment to come here, and Sarah is teaching a writing lesson to Oliver in my stead. Sarah is an accomplished journalist, so Oliver is learning from a master. I don't know how long I can stay away from her, though, before intruding for some more conversation and laughter.
I don't feel too much like talking. I'm mulling, not musing. There's emptiness and cups spilling over. There are candles, flames, extinguished by fingers, pssst and then a slow burn. There's falling -- by a door so it can't be opened (a boy must leap it in fifteen years) and in love.
A man walked into his therapist's waiting room each Tuesday morning and shared it with Maggie who was there waiting for her son to be fixed. Should I tell him that it's not me that is seeing someone? she wondered. The man was slight, lithe. He sat lightly in the incongruous chair across from her. She sat on the faux brocade divan. Baroque music played discreetly. It might have been Vienna. On the third or fourth week, he moved from the chair to the divan and sat beside her. It was then that it started, a hand on her thigh, their heads tilted, perfectly perfectly quiet.
Sunday, March 23, 2014
So, here's the thing. Last week was not a good week. There was a pretty decent earthquake, a full moon, a vague virus, the bottom of the bottle of the second batch of Charlotte's Web and some seizure activity after several weeks with virtually none. The week before last, there was also an Onfi wean that The Husband forgot to tell me about. AHA! Withdrawal was probably more the reason for the increased seizure activity than all those other things combined. I think. There's always a lot of thinking going on in these parts --shallow thinking (why, why wasn't it me that had a Javier Bardem sighting in the Polo Lounge in Beverly Hills the other day***), mid-level thinking (why the hell can I not make it through novels longer than 400 pages anymore?) to highly complex thinking (perhaps I walk around and drive around in a weird state of numbness because I actually CAN after nineteen years of dealing with the adrenaline rush of constant crisis?)
I highly recommend that any of you with children with refractory epilepsy or any of you with seizures or other autoimmune diseases at all give this medical marijuana thing a try if at all possible, because the thing is: even when Sophie does seize, she recovers quickly, she's coming off of one of the most vicious anti-epileptic benzos, she's more alert overall and it really, truly looks like this is the thing. I know that hundreds of you are struggling in your states to get easier access or access at all. I know that many of you have neurologists who are perhaps more like dinosaurs than healers. I say forget them and pursue what you think will help your kid. I'm not going to even qualify that and say something bullshitty like I am not a physician and in no way recommend this treatment without a doctor's referral. Think back. Didn't I tell you not to try that fifteenth drug if it was in combination with the thirteenth and fourteenth?
This concludes today's dispatch from the Medical Marijuana Revolution.
***Probably because I have never been to the Polo Lounge. A friend of mine posted it on Facebook and I died a small death -- you know, la petite morte. There's some medium-thinking for you. Look it up if you don't know what I'm talking about.
It was a busy one. The boys and I went to a beautiful bar mitzvah at an amazing restored temple here in Los Angeles. That's a photo of the ceiling which seemed like a portal to the heavens. I've only been to three bar mitzvahs and am always struck by the gorgeous traditions that the Jewish faith keeps. Maybe it's because they're foreign to me, but when I sit and listen to the ancient language and the sonorous voice of the cantor, I can't help but feel emotional in a way I never do when I attend services in the faith in which I've been brought up. As I scanned the English translations of some of the prayers, I wondered why this is so -- whether the day in and day out of ritual, say, in the Catholic tradition, coupled with the very real horrible things outside of its traditions effectively destroyed that religion for me. I figured that this ambiguity probably exists for some Jews, too, and that their mysterious and rich traditions, steeped in suffering, aren't always mysterious at all. Or maybe not. Maybe I'm just stubborn.
I frosted nearly one hundred cupcakes yesterday. There were chocolate cupcakes with chocolate frosting and some with vanilla. There were vanilla cupcakes with chocolate frosting and some with chocolate. There were chocolate cupcakes with peanut butter frosting and a dab of strawberry jam. What did I miss? Oh, there were coconut cupcakes and a chocolate cake with strawberry buttercream.
I felt almost sick watching nearly five pounds of sugar, two dozen eggs and five pounds of butter disappear. Yikes. I'm not doing much to help efforts in clean living am I?
Saturday, March 22, 2014
Friday, March 21, 2014
Remember the foam that my father bought and intended to use for Sophie's walls last Thanksgiving? Please. Read about it again and then come back.
Well, looky look!
There's beautiful upholstered padding all around the room so Sophie's falls and head bangs will be a thing of the past. (Unless, of course, she goes for that nice thin strip of window frame.) Thanks, Mom and Dad! There's even padding on the sills, and over the next few days I'm going to slowly get rid of all the crap we've been using to shield her from injury.
To tell you the truth, I could use some padded walls.
This is happening right now:
Eight dozen cupcakes and one birthday cake for one of my best friend's sons' bar mitzvah tomorrow. I'll post photos when they're all frosted.
What's happening in your parts? (not pants)***
***One of my readers read that question once as "what's happening in your pants?" and I just love that 'cause, you know, I'm Virgo the Virgin.
This is not a conversation.
She drove the same ways under the same skies, preferred the alone times to those when everything was filled up, the seats with bodies, the air with talk. There's no sky like a blanket under which to sleep. There is no desolation in driving because only then was she free to think of him.
She drove up and sat in front of Maggie's house, turned off the ignition. She needed to be held. The rosebushes that lined the walkway were sprouting buds, pink, tight, wound to a point. Maggie's house was dark, the drapes drawn and when she rang the bell, no one answered.
Thursday, March 20, 2014
That bougainvillea is cray-cray, as Oliver would say in the language of the millenials (at least for today). It's everywhere here in sunny Los Angeles, its paper-thin flowers hanging over concrete walls and poking through chain link fences. It's at once riotous against the blue sky and garish with its showy pinks and purples. I know our spring is nothing like yours if you live pretty much anywhere but the southwest, but the season touches us somewhat, and I'm going to blame the vernal equinox on my lightheadedness this week, the faint nausea and jittery nerves. I've been grappling with this for weeks, feeling almost like I should collapse, that it's due. I feel -- well -- cray cray.
It's time to post my favorite springtime poem --
To what purpose, April, do you return again?
Beauty is not enough.
You can no longer quiet me with the redness
Of little leaves opening stickily.
I know what I know.
The sun is hot on my neck as I observe
The spikes of the crocus.
The smell of the earth is good.
It is apparent that there is no death.
But what does that signify?
Not only under ground are the brains of men
Eaten by maggots.
Life in itself
An empty cup, a flight of uncarpeted stairs.
It is not enough that yearly, down this hill,
Comes like an idiot, babbling and strewing flowers.
Edna St. Vincent Millay
Wednesday, March 19, 2014
Tuesday, March 18, 2014
Why I Am Not Irresponsible, A Jerk, A Moron, A Fucker, An Anti-Vaxxer Worthy of Your Contempt with an Addendum
I am just afraid.
There have been a slew of alarming articles in the media of late regarding outbreaks of disease -- measles, mumps, whooping cough -- that were largely thought to be eradicated. I won't link to them here because they're readily available anyplace you get your news. The articles inevitably draw a line between those who are responsible, intelligent, morally superior, and of a sound and modern mind who vaccinate their children and those who are jerks, morons, fuckers, anti-vaxxers, and at worst, murderers, who in refusing to vaccinate their children put those who do at risk. The usual celebrities are dragged out to anesthetize us at best and drive us into an insane furor at worst. It's apparent, of late, that the powers that be and their acolytes find the situation so alarming, they've brought out the big guns and just shoot their mouths off stridently with flat-out accusations. Just fucking vaccinate your kids! I read on Facebook the other day. Who are these people? another person asked, I think they're disgusting. When will they feel remorse?Like, like. They should be fined. Like, like, like. Idiots! Morons!
Nineteen years ago, I vaccinated my daughter when she was two months old. She began seizing shortly after and didn't stop for nineteen years, until a couple of months ago when we began to give her cannabis oil. We don't know whether the vaccinations caused her terrible disorder or whether they were a catalyst for the vicious infantile spasms that eluded every sophisticated treatment thrown at us. Possibly, the doctors told us, then. Probably not, but no more vaccinations for her.
When our first son was born, we decided with his pediatrician that we wouldn't take the chance that he, too, would have a reaction to the vaccines. We did the same with our next son. At no point were we irresponsible, stupid, murderous, immoral, disgusting, or anti-Science.
We were afraid. We were afraid to vaccinate them and afraid not to.
My sons will probably get vaccinated, slowly, before they go to college, but don't think I won't be terrified. You have not persuaded me to do this with your cruel words, your flaunting of your knowledge, your faith, your certainty and your condemnation. Nor will I do this to save your children. I will do this because I am afraid.
In the meantime, stop telling me that I'm irresponsible, a fucker, stupid, anti-Science, disgusting and only worthy of contempt. Don't placate me with false understanding or a concession to my difference. There are many of us out here.
You might, instead, hold my hand as the doctor slides the needle into my two-month old baby's thigh and watch with me as her mouth makes a perfect O before the scream comes out. You who have babies know that look, don't you? Keep holding my hand a few weeks later when another life begins, when my other hand injects her dimpled thigh with high-dose steroids to stop the seizures that just won't stop. Keep holding it as I walk with her screaming for hours and hours and hours, for days and weeks and years. Place your hand on my back as I stoop over her and use my fingers to pull her shit out when she's so constipated from drugs and fat and cream and sluggish ketones in her blood that she can't do it herself. Hold my hand again and whisper confidence when I pick her up off the floor and frantically look to see where the blood is coming from -- the base of her neck? the natural part on the left? over her ear? Hold my hand when they bend her in half to draw the fluid from her spine to relieve the pressure in her skull. Sit with me and watch as they slide her, like a tiny wrapped package, into an ambulance, a PET scan. Watch with me as they roll her away. Hang with me and wait for the doctor to call back, for the insurance company to send the check, for the seizures to stop, for the marriage to fail and the heart to scar over.
Stay with me for months, for years, for decades and reassure me that this sacrifice is a noble one.
The brilliant public policy writer and poet, fellow caregiver and friend Jeneva Stone wrote this today as a comment on the above post:
[One] factor that drives the anger on both sides is fear--fear of disability. AND for good reasons--look what Elizabeth and I both live through. NO ONE wants that for their families. What's left out of this public policy argument is that the U.S. is willing to pour billions into vaccination to prevent the many, but the U.S. is NOT willing to support caregivers and their disabled children (the few) to the extent that these families can lead lives of reasonable freedom and normalcy. We're just the "outliers." Until U.S. public policy on vaccination also supports outliers, people will continue to be afraid to vaccinate: the emotional, social and financial costs are unbelievably high for caregivers, and the solution is not, as my brother-in-law once told me, "to become poor." Everyone who is afraid to vaccinate their children can see how badly disabled children and their families are treated: from the lack of accessible housing to social ostracism to financial collapse. We have here the convergence of obvious societal indifference to severely disabled children and an emerging public health crisis. While intellectually I support vaccination, frankly, I empathize with the people who are afraid--why berate them? Redirect your passion to ensuring that people don't have to be afraid to vaccinate because the consequences of disability are so dire. Repair the social safety net--everyone knows it's gone.
Yes, I vaccinated my kids. But I could easily have believed that Robert's problems were triggered by his MMR vaccination, which occurred just before his dystonia manifested. I've spent a lot of time with top geneticists and neurologists: no one will say there's any innate connection between vaccines and the onset of genetic disorders (because that is likely neither true nor responsible), but stress to the body can trigger an innate genetic variant. All of us have variants. Our information about how these triggers work is incomplete, and triggers also include growth, viruses/colds, eating too much protein (or other nutrients) when you don't know your body can't handle it (which led to "basal ganglia meltdown" in one patient). Correct: vaccines are not a probable direct cause of the majority of childhood disabilities, but they may contribute indirectly to early manifestation of genetic disorders. And I don't think the problem should be waved away, as "oh, but that was going to happen anyway" because we also can't gauge the relative impact of early or late onset. Say the MMR contributed to early manifestation of Robert's genetic disorder. Say he might have developed typically for a while longer--developed more speech, say--maybe then I would have had an easier time with educators and fewer doubters about my child's relative intelligence.
And an "oh that was going to happen anyway" is just brushing under the rug another deeply serious public policy problem. NO ONE aside from Warren Buffet has the resources to pay for proper care for a child with severe disabilities--the cost of medicine has risen high enough that it's impossible. No one is more responsible than caregivers are--would you have the patience and commitment to do what we do every day?
what did I see to be except myself
i made it up
here on this bridge between
starshine and clay
from Lucille Clifton's poem, won't you celebrate with me
Sometimes the urge to joke to be offhand is not right, too easy.
Deflection is not honest.
I am struggling.
If I were a pray-er the verb not the noun I'd be on my knees.
If I were a prayer the noun not the verb, you could write me down in tiny script.
a slip of paper in a bottle floating, a bit of fuzz a seed,
your wish, blur, blow.
Monday, March 17, 2014
My son is making so much money from his lemonade stands that he is donating part of the proceeds to the organization that is providing access to medical marijuana to children. He's also donating to me in the form of the above perks. He's a fine, fine son, and I'm grateful to have the privilege of being his mother (although I'm tempted to dig into his stash -- shhhhhh.).
So that's what I wanted to do after I woke this morning to a huge jolt and then some seconds of shaking. Have I ever mentioned that I hate earthquakes? I know I go on excessively about the weather here, the outrageous beauty of it and how ever since I've moved out here (15 years ago), the winter months are no longer ones where I feel faintly suicidal. I really hate earthquakes, though -- and particularly the awful jittery, faintly nauseous feeling I have for hours afterward. Like right now. Some people are charged up and excited, and they're probably the same kind of people that love the crazy rides at amusement parks or think bungee jumping off of skyscrapers is cool, but that is not me. I hate earthquakes. Feeling the very ground under your feet shake and sway is a feeling like no other, and it's not good. At least for me.
Happy St. Patrick's Day, though. I do love the Irish. I might have to have a Guiness before noon to calm my nerves.
Sunday, March 16, 2014
That's Sophie's little foot right there in the corner. She's had quite a few seizures the last couple of days, probably the remnant of the moon's pull and tides. At least that's what we're saying in these parts.
Oliver had a lemonade stand and made quite a bit of money, a portion of which he's donating to the non-profit foundation that is helping children get access to medical marijuana.
Henry just walked by and did that trick where you make a horrible noise by holding your hand in your armpit and waving your arm up and down. I said Why would you think I would think that's funny? I know it's trite, but boys. Yeah, boys.
I've done laundry, supervised the lemonade stand, read a bit of Armistead Maupin's Tales of the City, talked on the phone with friends, argued a bit about Confederate flags and the people that fly them, restrained myself from eating sugar, moved papers on my desk to the kitchen and then back, walked to CVS with Sophie to pick up her medications and felt grateful that she receives SSI funding so I can actually pay the deductibles without careering off into the financial anxiety abyss I find myself in these days.
What happened in your parts? (not pants)
I hate to sully the pages of the blog with the photo above, but it struck me today that it's the perfect adornment for the mind creates the abyss, the heart crosses it. Those words are Sri Nisargadatta's -- an Indian philosopher, spiritual teacher and guru, and they appeared in my inbox this morning. When the giant pick-up truck pulled into the parking space a couple spaces over from mine yesterday, I was sitting in the back seat of the car, reading. It was a glorious day in Santa Monica, a quintessential southern California day, and the beach was packed. I had sat in the sun too long the weekend before and gotten a nasty sunburn on my neck and shoulders, so I dropped Sophie and Mirtha off to walk and stretched out in the back seat with my book, the first of Armistead Maupin's Tales of the City. When I looked up to muse about my life -- all its incongruities -- the Confederate flag fluttered into view, and I thought at first it was part of a movie shoot. I grew up in the south, and it's not an unfamiliar sight there -- flying stubbornly off of houses and trucks on the backroads of the country with all its menacing history, but on the shimmery coast of southern California, it's virtually unknown. You'll have to forgive my pious intake of breath. The beaches here are public -- the entire coastline is public -- and on a sunny winter day in Santa Monica, the variety of people out enjoying themselves is staggering. There are Latino families and aging surfers, middle-aged women in bikinis on roller-blades, RVs parked in handicapped spaces with stuffed animals hanging off of bumpers and old men in lawn chairs sitting on the roofs of cars. There are families of gods and goddesses, and eighty year old muscle men in tiny bikini shorts. There are tourists who stumble through the light, uncomprehending that this is where people actually live. I have never seen a Confederate flag flying, though, so I got out of the car, curious, and took a picture when I realized it was not a shoot but a real group of people. I confess to wondering what the two dark guys sitting on the concrete barrier where pavement turns to sand thought about it. Someone asked me later whether anyone had said anything, had been anything but passive. I told her that having grown up in the south, I wouldn't mess with those people, the type that fly Confederate flags, that they're mean, mean in the sense of stupidity, obdurate. There's something unfathomable about the obdurate, incongruous.
The mind creates the abyss, the heart crosses it.
There's no but between abyss and heart, only a comma, a pause. I have much that is incongruous in my life right now, some of it unfolding here, much of it unbloggable. I am at once holding the match, looking over my shoulder -- pause -- and a pile of ashes, smoldering. The Confederate flag -- pause -- blue skies and a rainbow of people, beating hearts, thump. Thump -- pause -- thump.
Friday, March 14, 2014
|Hilton Head, 2006|
Languages are not simply a collection of words. They are living, breathing organisms holding the connections and associations that define a culture. When a language becomes extinct, the culture in which it lived is lost too.
via The Death of Language, BBC Today
We live in a small house, and in any given moment any one of us knows where the others are, particularly if we call their name. Sophie's room is at the back of the house, catty-corner from the boys' room and down a short hallway from mine. Despite padding her room with a number of pillows and beanbags, cutting off the top half of the door and padding it so that Sophie can walk around safely, stay contained but not boxed in, and placing her bed on the floor to lessen impact, she has still managed to hurt herself. At one point she liked to throw herself into the closet doors which were louvered, made of cheap shutter-like panels. When we padded those, she seemingly sought out the two-inch edge of unpadded wood and banged her head on it. She'll curl up on her bed and scoot to the back wall, find a perfect spot to throw her head onto the wall, exactly where the pillows stop. If I'm reading in my room or cleaning up after dinner, sorting through mail or walking in the front door and hear a banging, I might call out What was that? One of the boys might say, Sophie's banging her head! and then one of them might go into her room and move her from whatever position she's maneuvered herself. Sophieeeeee, we all say in the exact same way, annoyed.
Sophie has also had seizures, thousands of them, and fallen involuntarily, hitting the knobs on her dresser, a shelf, a toy with a hard surface, the two inches of moulding not covered by carpet or padding. Those falls have always been loud. They're thuds, followed by a desolate silence, a silence simultaneous with our intakes of breath, our gasps, our hearts startling, jerking, racing. I might call out What was that? but I'll know instinctively, and we'll race from wherever we are in this bungalow toward the source of the thud. We have found Sophie seizing or just sitting up after dropping in a seizure, her hair matted with blood, her tooth knocked loose, her head wedged in a corner, her kneeling on the floor, a backward crucifix, folded face-down on the bed. When you live years with that happening, sometimes multiple times a day, you get both habituated to it and instinctively primed for it. You get, I imagine, a mild form of post-traumatic stress disorder. I believe my children -- both boys -- have this, and they are also exquisitely mindful when they make loud noises themselves. I'll hear a terrific bang, a thud and immediately after it, one of them will cry That was me! -- so quickly it's more an extension of the sound than a sentence of its own. The unspoken words are It's not Sophie! This, too, happens all the time. It is the language of our family.
Since Sophie began taking Charlotte's Web, she goes for long stretches of weeks without seizures. Even writing that is bizarre to me, and to tell you the truth, we don't really talk about it. Yet. We're not sure if they'll come back. It's very, very strange. We have customs, a careful culture. The other night Oliver whispered to me that he couldn't remember the last time Sophie had a seizure at dinner. Seizures at dinner literally happened every single night. For years.
Last night, I heard a great thud and an immediate THAT WAS ME! shouted by Oliver. Then he shouted that maybe he wouldn't have to say that anymore. I smiled to myself and wondered if our language might be becoming extinct, hoped it was so. Yet.
Thursday, March 13, 2014
I lay on a couch today and spoke into air. We writers see words and worlds in words, pluck them from the air, make shapes with them and coax meaning back from nothing. I haven't yet made words of Sophie not having seizures, not really, nor her smile, her strange panting, a dinner without violence, a morning without dissociation. Or I have made words, strange world words, and as writers know, words only float, rarely settle, rarely shape themselves into meaning except for the absurd. Then they are insistent. The moon rose over a building right in the middle of the arms of a tree, and I only had to notice it.
Listening to an old friend's music, and I'm wearing pale pink and jeans and it's a steady beat and a low, low voice, a growl that makes me shiver, yes, walking on air. The boy is making pasta in the kitchen, yesterday's lassitude is today's dig deep. There is no denying the wild horse in us, said Virginia Woolf. I've been thinking about miracles of late, not the Jesus kind, how small they are and yet, how huge. I've been thinking of paradox and the skill in holding it, the tightrope stretched tight, the give and the balance. It's a miracle! they say, over and over and I want to agree, I nod my head, I say yes. I bristle in the assent. It's been nearly twenty years of work, this miracle. Not a descent from nowhere, somewhere -- bing! or ping! -- it's hard labor, the years of it, what I've done in mind and body. S pointed out that we work our asses off, and I laughed at the spread of mine despite what should be a grotesque muscularity. Paradox, again. Is that a miracle? Thank God! others say, for the miracle! I think, it's a plant! I, and many others, worked our asses off to get it despite it being kept from us by those who keep things down, whose power is such that paradox is impossible, who reel in the tightrope, shield their eyes at the attempt, would never walk on air. I'm drained from the work, from the voices that make miracle suck me dry. Back and forth, back and forth. I'm walking toward the growl that makes me shiver, the air. Hold your breath.
Wednesday, March 12, 2014
|My Italian grandmother (standing) with her sister in Mendocino|
My kids make fun of me for many things -- lately it's the "mom selfie" which entails a certain angle that curtails the double chin effect, and they always mock how I use my hands when I talk. My father, whose family is from the Calabrian region of southern Italy sent me the following video with the suggestion I start teaching Italian hand-speak to Oliver as a homeschool option. Here were his exact words: To ensure Oliver's retention of his Italian heritage while being home schooled you might include this as part of his curriculum. I will test him myself. Last night, I posted my thoughts about the CNN documentary on both Facebook and here and got an overwhelming response which included a heated argument about me expressing the tiniest bit of sympathy for the insufferable Governor Christie and the way the media edits and shapes a debate, so today I admit to feeling a lassitude that calls for something light. Picture me without a double chin, using my hands to say all that.
Tuesday, March 11, 2014
|from Spike Lee's great movie Do the Right Thing|
My initial thoughts on the CNN/Sonjay Gupta special on medical marijuana because I can type faster than I can talk:
1. No one spoke about the dart board game that neurologists currently play with epilepsy drugs. I've had doctors tell me that prescribing epilepsy medication is "just as much an art as a science."
2. I think any shred of hope Governor Chris Christie had to be President of these United States is officially dashed. I've always loathed the guy, but I have to say I felt almost sorry for him given how CNN chose to edit his parts in this story. Yikes.
3. Many emotions going through my head -- the obvious whys and what ifs for our Sophie, anger that political bullshit has stymied this perhaps revolutionary treatment for our children, cynicism that Big Pharma is chomping at the bit, dismay that people weren't really educated on this special about the often devastating side effects of current epilepsy treatment, including surgeries like hemispherectomies. Seriously, people -- how many people do you think are walking around with one half of their brains that knew what the long-term effects of this might be?
4. Grateful that after working our asses off educating ourselves about medical marijuana and finally getting it (thank you Realm of Caring, Ray Mirzabegian, Jason David and the Stanley brothers, Sophie is doing PHENOMENALLY WELL. She was having up to five tonic-clonic seizures a day and hundreds of myoclonics and partial complex episodes as well as atonic drops. She is now going literally WEEKS WITHOUT A SINGLE SEIZURE, and when she does have one, they are much less severe and she recovers quickly. We have been able to begin weaning her from one of the most addictive anti-epilepsy medications in the arsenal, and it hasn't been nearly as difficult as it has been in the past. (Sophie has had trials of nineteen drugs in her nineteen years).
5. Our family is in a sort of state of shock about all of this, I think. We kind of don't know what to do with ourselves. When I watched the special, I teared up a bit for Vivian and her family, but my heart was broken for my family, for my boys and for Sophie, who have endured this shit for so many years, as well as so many other families.
6. What the hey, Obama: DO THE RIGHT THING.
Have I ever told ya'll about the time in college where I thought I'd branch out from the English and French literature courses, the Chinese language, folklore and history and take a course in the Engineering school titled Solid Waste Management? It's dim in my mind, but I trudged over hill and dale to a part of the UNC campus unknown to those immersed in Auden and Balzac and learned about how our waste is managed. God, it was awful. The textbook was graphic, as I recall, and the professor insanely dull. I have no aptitude for such practical matters. It was probably the worst class I'd ever taken, right after Advanced Calculus. I remember absolutely nothing about it except for that. I blamed myself for the desire to be well-rounded.
Nearly thirty years later, I participated in a field trip today with other homeschoolers to the Edward C. Little Water Recycling facility, the largest water recycling facility in the United States. After donning a hairnet, safety glasses, a vest and hard hat, we were taken on a tour throughout the actual facility, and it was easily the second best field trip I've ever been on (after Alcatraz). Fascinating stuff, ya'll, and not a little sobering. We walked over vast vats of bubbling sludgey water and were so high up at one point that I felt a little nauseous and had to talk myself out of crawling across what to you might have looked like a steel catwalk but to me was a precarious vertiginous path to nowhere. I knew Oliver would rather have jumped into said sludge than see his hair-netted matron of a mother on her hands and knees, so I sucked it up and looked straight ahead.
Weirdly enough, we've been delving into chemistry and had just read about chemistry and technology, so this was just about the most perfect accompaniment we could have imagined. Days like this make me so grateful that we've made this decision -- Oliver AND I learned so much today it was almost exhilarating. I'd even go so far as to say that in 2014, I'm far more well-rounded -- in every way -- than I ever was in 1985.
Monday, March 10, 2014
This won't be a post about Oliver and our efforts homeschooling. Things are going very, very well on that end, and I've nothing earth-shattering to report other than Oliver likes school!
I did read the following information, though, about a presentation given by Dr. Bonnie Goldstein who is following Sophie as we journey down the medical marijuana path. I do not know the person who wrote this out, but from what I can tell in an initial read, it does a great job summarizing some of the science behind cannabis. Dr. Goldstein is wonderful -- the kind of doctor who you can call or text at any time of day or night with questions -- the kind that you DON'T abuse with said questions and answers because you trust that she will get back to you immediately (ahem -- O Neurologists I Have Known).
Here's the link to read the summary of her talk/presentation that she makes around the country.
Email me if you have any other questions.
As we speak, Sophie has been having stellar weeks with little to no seizure activity, a revolution indeed.
Oh, and you might want to watch Sonjay Gupta's Weed, Part 2 which is airing on CNN tomorrow night (March 11th).