Friday, January 30, 2015

Yesterday was an upsetting day when the trivial medium of Facebook became heavy, weighted in pretension. The stomach churns, acquaintances repel and are repelled.

Fuck all a ya'll, the guy said in that movie about the American pharmaceutical industry and Other.

Henry's foot doctor said, as he probed in his big toe, There's no certainty with this stuff, and don't let anyone tell you otherwise.

We were talking about the hysteria over the measles outbreak.

That's it, someone said, if you don't vaccinate your kids, you can't be my friend.

The luxury of feeling in control.

What else? I read a little blip on the Poetry Foundation website that resonated. Her poetry is generative, a poet said. Generative.
That's exactly it. I'll read and participate in what's generative, and I'll discard and dismiss what's not.

Thursday, January 29, 2015

Objects In the Mirror Are Closer Than They Appear (an inappropriate post)

I hear the whir of the rope even as I turn into the parking spot, the tick tick of my own signal still going. I sit and watch in the rear-view mirror and then the side as he jumps over and over and over, the rope twitching under him, his dark skin shiny with sweat. I've watched him for years. He has gray at his temples. Later, he checks me out, pulling my fruit across the scale, ringing me up.

Wednesday, January 28, 2015

Dispatch from the Revolution: Cannabis Update and Contortions

New York City, 1996

to Christy

When Sophie got home from school today, I noticed that she'd once again not drunk much of anything. I gave her the afternoon dose of Charlotte's Web and then lay down next to her with one leg draped over her legs, my strong peasant left arm holding her left arm gently down and my strong peasant right arm wielding her sippee cup. I placed it on her mouth and spoke gently but firmly about her need for liquid and dripped a few drops in. She swallowed and then pursed her lips and sucked on the cup. I did this over and over for the next twenty minutes, all while listening to Oliver who was sitting in the beanbag chair in the window chatter about Teslas and the video of a brother and sister singing one of the theme songs to the movie Boyhood. At one point, my position became torturous when Oliver leaned into and over me to show me a video, and because I'm that mother who is aware of the needs of the siblings of the special needs kid, I simultaneously forced the Special Needs Kid to drink and craned my neck into an awkward position so I could respond appropriately to The Sibling. I might have even remarked on the absurdity of it all, and Oliver agreed.


I kind of want to back up here, because this post is supposed to partly be an update on cannabis. Sophie has now been taking the Charlotte's Web Hemp Oil at the higher ratio for a bit more than a month. We've also tinkered with the dosage and found something that is working for now. We're still not in the incredible spot we were last year at this time when Sophie's seizures disappeared for weeks at a time, but we might be close. The stuff works for her. We're also continuing the Onfi wean, and just as everyone who's ever visited here knows, the benzo wean is an ugly, ugly process. Today, I had a lovely and very informative conversation with my friend Christy who writes from Maine about her own struggles with her son Calvin's refractory epilepsy at Calvin's Story. As I walked the aisles of Trader Joe's, Christy suggested that the drinking and eating difficulties could very possibly be a result of the benzo wean, that forgetting how to swallow and drooling is a side effect of the drug and can increase when the drug is weaned. I think in that moment I got so excited and distracted that I threw in the chocolate babka and the chocolate cookies and the cinnamon bread, all of which this family does not need. So, later, when I got into my contortionist pose and coaxed Sophie to drink, I felt infinitely more patient with her and far less insane. My mind wandered to the time when Sophie was on another benzodiazepine, the hideous Klonopin and how it caused anorexia. My mind drifted to my helplessness then, how I watched her lose about 20% of her body weight and brought her to an interminable number of specialists who had literally nothing to say or suggest except for the eminent gastroenterologist at a prominent hospital who threatened a feeding tube. To make a long story short, I weaned her from the Klonopin, her appetite came back, she got into tip-top shape with the help of a naturopath and -- well -- here we are.

What's the point of all this? You do what you have to do. Light comes in through the cracks, even from as far away as Maine. I'm going back into Sophie's room to help her learn to swallow by coaxing a bit more liquid into her. Then I'm cutting a big old piece of chocolate Babka and listening to this:

When Your New Driver Teenager Forgets to Text You That He's Arrived Safely at School

I am wondering whether he's getting ready to ask me for a new pair of lacrosse cleats.

Tuesday, January 27, 2015

Thoughts on Sibling Issues

I've been talking a lot lately to friends and colleagues about sibling issues -- not just the near-constant bickering and conflict between typical siblings (ahem) but the relationships forged between developmentally disabled persons and their siblings. From the moment both Henry and Oliver were pulled out of my watery womb and into the air, I was aware of the implications for them. For Sophie, of course, having siblings meant more love and more life around her. When people ask me how I got up the nerve to have another child, particularly as we never did know the reason for her seizures, I generally say that it was an impulsive decision and that I couldn't imagine anything otherwise. In my heart I held the thought that more children, more love for Sophie, more people to bear the burden of caring for her when I no longer can. Is this unfair? Perhaps it is, but I mitigated the thought with a firm resolve to not expect my sons to do anything for Sophie except love and accept her. I was also -- sometimes painfully -- aware of the enormous burdens that parents of children with disabilities sometimes place, unconsciously on their typical kids. I never wanted either son to feel "responsible" for making peace, for not adding to my stress, for "making me happy." Even so, I have seen subtle signs of these things in both my boys over the years and felt both panicked and despairing over them as well as matter-of-fact (it comes with the territory) and resigned. You can turn any virtue into a vice and vice versa. My boys are incredibly self-sufficient and they've also been neglected. They jump to help me when I need it, but they are sometimes resentful that they are called to do so far more often than their peers. They love their sister and hate her sometimes -- or at least the situation. They've learned to accept the sudden and disruptive changes in plans we're often forced to make but voiced their annoyance and resentment of those disruptions. I listen to it all and try to respond and not react. Yes, sometimes I want to scream at them that I'm doing the best I can, that they're spoiled and clueless and have no fucking idea how fortunate they are, but instead I stop and listen and repeat what they say. You're really angry that Sophie continually seizes during dinner. I am, too. I hate it sometimes. You're really pissed that we can't go on family vacations very easily, and I get that. It's a bummer, and I am so sorry about that. That I'm not perfect goes without saying, but that my boys aren't perfect either when it comes to compassion and feelings of benevolence toward their sister is also true. I am sometimes irked when people talk about the great compassion that siblings of the developmentally disabled learn at a young age, how special they are and all that jazz. Maybe I'm defensive about it because of some deep-seated fear that I've fucked it up -- this parenting of three wildly different individuals, one of whom is basically a perpetual infant in her needs. I think, though, that it bugs me because it's unrealistic and it, in some way, makes trivial the very real hardships that siblings face.

This is an ongoing conversation. I'd love to hear what you think.

Monday, January 26, 2015

The Big Purge, Continued

to my sister, Melissa 
who collects the Fisher Price toys and childhood books
that we threw away long ago 
by trolling for them on Ebay

Before driving up to Point Dume in Malibu yesterday, I tackled my bedroom. At one point I felt slightly panicked at all the shit lying on my bed, but eventually I finished throwing away, sorting into piles and otherwise tidying up. The thing is that I don't even have a lot of clothes or shoes or bags. What I have a lot of is books and stuff. By stuff, I mean things like my Brownie beanie and change purse or the strange little gingerbread man made of pottery that has a pink, indented stomach with the word GUM printed on it, for when you go to bed and need a place to stash your gum. I got it when I was about eight years old which makes it more than 43 years old.

I'm preternaturally neat so my clutter is very, very organized. I live in a very small California bungalow, but it might as well be a Chinese box for all the things stored inside. Ordinarily, you'd probably be impressed, but in these bourgeois stream-lined, mid-century modern times, you might suffocate or at least feel like you're drowning. The Japanese book that I've been using as a guide is fairly harsh in how it assesses what to throw away. You're supposed to do it all in a certain order, too, or else you'll supposedly slip back into slovenly ways. I read somewhere in it that you were to pick up an object or a book and say, Does this bring me joy? and if it doesn't or you can't answer affirmatively, you throw it away. That gum holder brings me joy, so it's staying on top of my dresser, next to the little wooden box that my friend Noa gave me when I got divorced nearly 25 years ago. When you slide open the secret panel, there's a tiny little note inside that says, in Noa's handwriting, The best part is always inside. That little box and note sustained me during one of the darkest periods of my life (when I had no clue on what was to come five years later!). While I appreciate the aims of this Japanese woman's philosophy and understand the whole yadda yadda of not allowing objects to own you or to be too attached to things because they're things, I think you can take the pathologizing of loving your stuff a bit too seriously. Does the little orange copy of Li Po's poems bring me joy? No, it doesn't. I haven't read it in probably twenty-five years. But it once brought me joy because The Boy I Adored gave it to me. Do the baby teeth in my underwear drawer bring me joy? Absolutely not, and I threw that away. I'm not a hoarder, ya'll!

You learn a bit about yourself doing this sort of purging -- the bit that's just plain weird, in my case.

For instance, gaze upon this old Charles Chips can that I once ordered from a Vermont Country catalog because it reminded me of the O'Connors, a wonderful family with whom we were friends when I was a little girl living in Convent Station, New Jersey. The O'Connors had five kids, all of whom were Teenagers, and they always had Charles Chips cans of potato chips delivered to their house and stashed in their rec room in the basement. Back in the late sixties and early seventies of the last century, having a rec room with cans and cans of Charles Chips was incredibly neat, as we would say, and when I saw it in the Vermont Country catalog, I probably flipped out a bit too much for comfort if you're a Japanese woman who's written a best-selling book about tidying up your life. If the memory of a shag carpeted rec room with some Barca loungers, board games, a pinball machine, a WiFi and an extra fridge that held popsicles and six-packs of soda cans makes you happy, you'll understand from where I'm coming. That I ate the chips and saved the can is probably not something that this quiet, serene Asian woman would approve, but you'll learn next that I put it to very good use.

Some years ago -- okay, maybe fifteen years ago -- I put a bunch of stuff inside it as an earthquake kit. I stashed it under the dresser, behind a basket that had one of Sophie's old giant therapy balls, deflated and folded up for -- what? When I pulled the basket out yesterday, I had to tug it so hard that I probably resembled those characters in the A.A. Milne Pooh Bear books who had to tug on Pooh to get him out of a hole where he'd been stuck eating honey. And yes, there was an inordinate amount of dust that came out, too. But I digress. Out of the Charles can, I pulled a first-aid kit, two jars of Ready Candle, one bag of emergency candles, a harmonica, a silver Tiffany baby cup and one set of silver Tiffany baby utensils -- clearly all essential to survival for three days (particularly stashed under a dresser and behind a deflated rubber therapy ball for easy access). Unless Baby Oliver or Baby Henry had somehow crawled back there one afternoon in olden times to stash their silver as the living proof of some kind of genetic proclivity to hoard, I have no idea why that silver was in there, but I do remember fancying learning how to play the harmonica, especially if I could wear one of those cool contraptions around my neck while I played the flute, too. Was I planning on entertaining the young 'uns over candlelight with some Bob Dylan riffs, our house caved in while the Sharpshooter Swiss Husband (long story) stood on guard, protecting us from those who were not as well prepared?

Does it bring you joy?

I took the silver cup, the harmonica and the baby utensils out of the Charles can and lovingly packed the rest of the stuff back into it, along with some pouches of water that have 5-year expiration dates stamped on them (due to expire in August 2015). Then I slid the can under the small wooden table that sits by my Barbie closet and right by the back door. This way, I can grab it on my way out to the shed where our 30 gallon tank of earthquake water sits, all ready to be siphoned. I have no idea where to store the silver things but know the secret lies somewhere in The Brothers' closet where I have boxes and boxes of keepsakes. And yes, they do bring me joy.

Sunday, January 25, 2015

January Sunset in Malibu

Oliver, his friend Mac, Sophie and I drove out to Malibu at 3:30 this afternoon. It was about 75 degrees today and gloriously sunny, but we hadn't been to the beach in ages, and we particularly wanted to catch the sunset. I drove my sexy white Mazda on Sunset Boulevard all the way from our neighborhood to the coast and then headed north so it took some time, but the drive was easy and the boys entertained themselves by counting luxury cars. Luxury cars here are not the Mercedes and BMWs, but the Lambos, the Maseratis, the Porsches, the Rolls, the Bentleys, the G-Wagons, etc. ad nauseum and every single one was noted, and either Mac or Oliver "claimed" each one as theirs and I just nodded my head and hmmmmmed. Boys who love cars are entirely nonplussed by middle-aged women who couldn't give a damn. 

The sunset, on the other hand, a couple of hours later, was easily the most spectacular that I'd ever seen. I'm serious. It brought me to tears. I'm prone to hyperbole, but this was something else -- first some gentle blues and then pastel sorbets and then a bit of pink and orange and then -- well -- see for yourself! The sky was literally glowing.

I swear to you that there are no filters on any of these photos!

I don't know where ya'll live, but you should move here. At least in January and February. The universe is particularly abundant, then.

Saturday, January 24, 2015

Me and My Shadow

Or should I say Oliver and his shadow?

A Latin America Food and Marquez Feast: Group Two

I held my second Books & Bakes literary and food salon last night with another ten people. Mirtha made her Latin menu again, and I baked a red wine chocolate cake with a red wine chocolate glaze. I think the night went really well -- so interesting how different the two groups were and how different the conversation and discussion. This group was a mix of close friends, people I don't see very often but whom I really like, my friend Sally from San Francisco, and a woman whom I'd never met who found the salon through my blog! I felt so privileged to be in all their company and grateful that this small dream came true. I can't wait until next month when we'll be discussing Monique Truong's novel The Book of Salt and eating, probably, a combination of French and Vietnamese food. Although it's quickly filling up, I still have some spots in both groups on February 13th and February 27th, so email me if you're interested!

Interesting fact: The Book of Salt is a novel about a Vietnamese chef who works for Gertrude Stein and Alice B. Toklas. When I originally envisioned this salon, I fancied/dreamt of a bohemian type thing with women and men and artists and writers and musicians and thinkers and cooks who come and go. I've always fantasized about being a sort of Gertrude Stein with a monolithic head (physically, not figuratively) and body, married to a small woman who adores me. Ha! So weird that I picked that book and it's about them! I guess there are no accidents.

Another Interesting fact: Monique Truong worked on the manuscript of her book while a resident at Hedgebrook, the place that awarded me a residency in June! I only learned that when I read through her acknowledgements. What are the chances? I think that's a good omen, no?

Friday, January 23, 2015

Italian Relatives

Relatives,Mendicino, Italy
July 1985

The Journey

Anghiari is medieval, a sleeve sloping down   
A steep hill, suddenly sweeping out
To the edge of a cliff, and dwindling.
But far up the mountain, behind the town,   
We too were swept out, out by the wind,   
Alone with the Tuscan grass.

Wind had been blowing across the hills
For days, and everything now was graying gold   
With dust, everything we saw, even
Some small children scampering along a road,   
Twittering Italian to a small caged bird.   
We sat beside them to rest in some brushwood,   
And I leaned down to rinse the dust from my face.

I found the spider web there, whose hinges   
Reeled heavily and crazily with the dust,
Whole mounds and cemeteries of it, sagging   
And scattering shadows among shells and wings.   
And then she stepped into the center of air   
Slender and fastidious, the golden hair
Of daylight along her shoulders, she poised there,   
While ruins crumbled on every side of her.   
Free of the dust, as though a moment before   
She had stepped inside the earth, to bathe herself.

I gazed, close to her, till at last she stepped   
Away in her own good time.

Many men
Have searched all over Tuscany and never found   
What I found there, the heart of the light   
Itself shelled and leaved, balancing   
On filaments themselves falling. The secret
Of this journey is to let the wind   
Blow its dust all over your body,
To let it go on blowing, to step lightly, lightly
All the way through your ruins, and not to lose
Any sleep over the dead, who surely   
Will bury their own, don't worry.

James Wright

Thursday, January 22, 2015

Steel Magnolia, Circa 1983

Back in the day, I was a little bitty thing and I had no idea about anything at all. My melancholy was rooted, I imagine, in books, in a prodigious imagination, in the romance of not being known. Jane Eyre was the type thing I fantasized about -- the allure of truly being an outcast. That photo, unearthed in my purge, was taken in August of 1983, right before my junior year in college. Or maybe it was 1984, right before my senior year. I was a little bitty thing and I had no idea about anything at all. I don't remember the names of either of those men -- the older one was the professor who led me and a group of young people through a part of the Adirondacks that summer in a quasi-survival trip. We carried 70 lb packs on our backs and hiked about fifty miles in, I recall, and it was incredibly difficult. It rained a lot, and there were days when I focused only on the boots in front of me, hauling my own up and out of mud. I didn't sign up for this trip because I was destitute or a former heroin addict or because I was grieving a dead parent. Remember, I was a little bitty thing and I had no idea about anything at all. I signed up like I do a lot of things -- impulsively, and when I made my way to Syracuse and then on a Greyhound bus to Potsdam and then to meet this group of strangers, all of whom were experienced hikers -- well -- let's just say it was one of the most formative experiences of my life. I had never been hiking and the only camping I had done was probably in my back yard as a child. At the end of the ten days, I was awarded a Steel Magnolia award, and I remember how proud I felt. In fact, I might have just gotten the award when this photo was snapped. I came down out of the Adirondacks dirty and tired and grateful. I checked into a hotel by myself, ordered a steak and baked potato, took a long bath and got on with the rest of my life.

Wednesday, January 21, 2015

Fox Socks and Leopard Pants and Tiger Mothers

Sophie is on another drink and food strike. She has no problem picking up a myriad of toys and putting them in her mouth, though, so I'm loathe to think it a sore throat, a toothache or a canker sore.

She doesn't seem uncomfortable -- I don't think.

The agitation I feel is probably entirely disproportionate to the problem, and I'm hard pressed to tell you why this type of thing is so very difficult for me. Maybe it's just a behavior. I've heard of older teenagers with neurological issues suddenly becoming very aggressive and difficult to manage. A long time ago, I worked with a woman on a healthcare initiative who had a young adult with epilepsy. The boy was also developmentally disabled but quite high-functioning (those are the heinous terms we use), and as his seizures decreased, his behaviors increased. He was quite uncontrollable at times and at others, severely depressed. I imagine a brain screwed up by seizures and drugs, seizures and drugs, seizures and drugs and then, finally, no seizures, no drugs, a black hole that needs to fill up, a sort of chaotic world. That depresses me.

I guess I shouldn't go there. I should put on a cheery face and not project into the future. In the moment, it's all I can do not to syringe liquid down Sophie's throat. She did finally just drink a cup of juice and water, slowly, lying on her back. I kept bringing her cup to her lips and holding it there until it dripped down her throat and her reflexes kicked in. I remained calm in a sort of willed manner and kept at it for twenty minutes.

I could never do what you do.
This is how we do it.

I can relax a bit now, tamp down the strange and primitive mother tiger fires. Wait for things to resolve.

Tuesday, January 20, 2015

When the POTUS Made Me Rethink My Escape Plan to Fiji

So, I'm in the middle of reading this Japanese book about tidying up, and I'm in the middle of doing a smash-up job of purging my home of crap -- books, papers, clothing, vases from florists, cheap jewelry, the stuff of the bourgeoisie. While it feels good to be so constructive, so diligent, it also makes me terribly emotional. Yes, I open up photo albums and flip through Christmas cards that I've saved from fifteen years ago. Sure, they're photo cards of people whom I love dearly, but what the hell? I put them back on the shelf. I had difficulty ridding myself of 30-year old paperbacks that I'd probably bought used but that stand for --- what? Youth, I guess, and beloved academia. My UNC days. My old boyfriends. My old husbands (relax, there's only one).  Here's a photo of a box that I put in the back of the car and then parked in the lot next to the Goodwill and bided (or is it bode?) my time unloading:

I read that Pocket Aquinas on a plane on my way to Europe for a grand backpacking tour with my friends Louise and Jan. During the summer of 1985. We had graduated from college. That's the kind of weirdo I was, apparently. That Aquinas was not a light-hearted guy. The Turgenev was from a Russian literature class I took my sophomore year -- back in the last century! I never took philosophy, so I imagine the Plato was me trying to educate myself. Good Lord. I felt emotional and maybe even a tad bit insane in my nostalgia.  There were a few books that I couldn't remember the reason why I had saved them. For instance, why Erich Fromm? If ever there was a boring class, it was Psych 101 which I'm assuming assigned this.

Even the title is enough to make you shudder and lay your head on your desk in defeat. The only thing interesting in that book was what was in the flyleaf -- written apparently by one of my Spanish-speaking lovers:

Funny, but I totally don't remember any Spanish-speaking lovers.

Maybe it's all the going through the childhood stuff of mine and my three children that is giving me the blues (the toys in the attic! I'll confess here, too, that I saved many of their teeth. Yes, teeth. When the tooth fairy took them, she deposited them in little bags in my underwear drawer) -- all that time passed and passing, how it's a flash of lightning and then again, in some respects, so very, very long. I don't miss the days when I was young or even when my kids were young because -- well -- because my life is a good one, and each stage is terribly interesting, if sometimes very difficult. I'm glad to be alive in 2015. That being said, the purging was also exhausting. Frankly, it made me want solitude, to be alone with my thoughts and not badgered by teenagers or obligated to change a diaper, take the girl for a walk, go grocery shopping or even wash my hair. I texted one of my best friends that I wanted to run away from everything and everybody. He texted me back that I had missed my chance robbing liquor stores with him and living a life on the lam. I told him that I was more interested in Fiji than a life of crime. My friend lives as austerely as a monk and is not tied to possessions in the least, so I wanted him to be proud of me, proud of my purging. Here's what our texts looked like:


I just watched the President rock the country in his State of the Union (is there anything more ponderous than that title?). My only caveat to his otherwise glorious speech was that while listing all the citizens of the country who deserved equality, he neglected the cognitively disabled. I know it was a slip -- at least I hope and think it was a slip -- but it made me wince and mumble under my breath. I hope it's not emblematic of the already extremely low status that the cognitively disabled hold. As for the poker-faced Tan Man and his White Man colleagues "across the aisle" -- well, who gives a flying foo foo for them? At best, I'll give them a charitable bless your heart. Despite my dread of listening to the droning Mitch McConnell and the Tan Man for another couple of years, I might put the Fiji trip off to watch our President hopefully rock through them with us.

"Science is More Than Equations or Experiments"

Last night a friend sent me a link to a video of a man telling a story as part of The Moth presentation at the World Science Festival last May. The Moth is a national storytelling platform where ordinary people tell extraordinary stories, on the fly, in front of an audience. If you've never heard of it, you should check it out. On the web page, the World Science Festival noted  In keeping with Moth tradition, all stories must be told within ten minutes, without notes. Their stories are a reminder that science is more than equations or experiments; it is a window to humanity, a quest for understanding, and, often, a way of life. The participants included a geneticist who had discovered a breast cancer mutation, the White House chef, an archeologist, a neuroscientist and Brian Hecht, an entrepreneur whose story of planning his bar mitzvah was brilliantly used to convey his life as the sibling of a brother of a boy with severe epilepsy damaged by a vaccine.  

I so needed to hear this, particularly after another bruising incident with people who call those of us with more measured responses to vaccination dumb-assess and immoral.  Hecht's performance is particularly poignant as well because it recounts his own coming out as a gay man. It's about caregiving and the incredible burdens that some are called to bear. What it says about our very human need to control is a profound reminder. I won't expect that those who would call others dumb asses would watch it and be changed, but you never know. In the meantime, I feel affirmed, if not devastated. Thank you, Jill, for passing this along to me.


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