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.

Monday, January 19, 2015

This Is Also Los Angeles With Sophie

I took Sophie with me to the place across La Brea where they make a sparkly soda drink with lemon and thyme. We hobbled along, Sophie leaning into me, my too-big shoulder bag slipping down, my mouth set as it so often is until I consciously think relax. While we stood at the corner and waited for the light to change, Sophie kept trying to take steps. She can keep walking, but she can't stand still. I wished for a person in her life that might bring her on a walk, play with her for a couple of hours, give her and me and us a break. I'm resigned to the fact that I'll always be paying someone to do this, so it is -- in the end -- a matter of money. I've tamped down that frustration for a lot of years, When's the last time anyone offered? Never. I can't remember. I make those excuses. It's hard. I make those justifications. Everyone has their thing. I am understanding (they just don't know because how could they?) until I am not (no one gives a damn). On the way, I skirted the corner because a man in a bikini top and a pair of blue jeans was dancing around the Lenin statue, and he made me nervous. Every time I turned my head to check, he was standing and staring at us, staring at Sophie and her awkward gait. I should have whipped around and taken his photo, a #dontstarepaparazzi, but I had Sophie, and the drink and my too-big bag. He followed behind me a bit, two-stepping, me nervous, hustling Sophie along. A gardener came out from behind a hedge, and I asked him to keep an eye on the guy in the bikini top, and at first I thought he didn't understand English, but his voice was muffled behind a face-mask. He nodded his head and waved Sophie and me on, turned around to face the dancing man, was resolute like a sentinel with a pair of clippers.



Congressman John Lewis, in The Art and Discipline of Nonviolence

I was entirely moved and humbled by this interview with John Lewis, the Congressman from Georgia who marched with Martin Luther King in Selma and who has devoted his life to the priniciples of nonviolence and, above all, Love. I don't know of any better philosophy or way to live your life.

Saturday, January 17, 2015

Saturday Night Mermaids

woodcut by Jose Luis Borges

I really don't have much to post tonight, but I needed to post the above piece of art that Angella sent me via email. She said that it evidently hangs in the International Folk Art Museum in Santa Fe. It looked vaguely familiar, but I couldn't put my finger on it until I realized that J Borges, the artist, is Jose Francisco Borges, whose woodcuts illustrate this amazing book called Walking Words by Eduardo Galeano that I've owned for some years and periodically dipped into to marvel at and exclaim over. Here's a snippet:

Windows on the Sea

It's not fixed in one spot. The fate of mountains and trees lies in the
roots, but the sea, like us, is condemned to a wandering life.
   Sailors at heart: we men of the coast, are made of sea as well as
earth. And we know it well, even if we're unaware of it when we
navigate the waves of city streets from cafe to cafe, and travel through
the mist toward the port or shipwreck that awaits us tonight.

Here's another one:

Window on a Woman (III)

No one could kill that time, no one: not even ourselves. I mean: as
long as you are, wherever you are, or as long as I am.
   The calendar says that that time, that short time, no longer exists;
but tonight my naked body is oozing with you.

Friday, January 16, 2015

Green Shells on Treetops and Vaccinations

That's a Manus Green Papuina, a rare snail from high tree tops on Manus Island, off the coast of Papua New Guinea. No I did not find it lying in the sand next to the Pacific Ocean. I peered at its outrageous green through plate glass in a rare shell exhibit at the Museum of Natural History today. Oliver and I had a field trip -- mainly to do an evolution/adaptation project in the Dinosaur exhibit, but we also paid a visit to the shell collection and the gem and mineral exhibit in hopes of finding some pearls which would round out our reading of Steinbeck's The Pearl. There were no pearls. But that green! Outrageous! The universe is abundant!

I also baked two loaves of banana-coconut-chocolate-chip bread and made one big pot of Mulligatawny soup and some jasmine rice. I responded to someone's Facebook post about the recent outbreak of measles at Disneyland, not because I wanted to get into an argument but because this person asked the question why people don't vaccinate which then provoked the usual nasty and sarcastic replies about how stupid and immoral they are, that then provoked my indignation and real desire to let people know that not everyone who refrains from vaccinating their children is an immoral idiot. Sigh. I wrote my last post on this issue here, so if you want to read it, you can. Since I wrote that post, as planned I've begun vaccinating Henry slowly and judiciously, so if you're new to the blog and generally restrict your reading to mainstream media, are getting all freaked out that this is some crazy person writing, you can rest assured that he isn't a danger to the larger community.


To tell you the truth, I feel like wolfing down both loaves of bread which would probably be considered emotional eating, no? Instead, I am going to contemplate that beautiful shade of green and the creature that lived inside a shell, high on a treetop on a tropical island, slow to respond and basking unaware in its own beauty.

Thursday, January 15, 2015

The Yellow Tree

I always forget the name of the tree in my front yard. It goes through a number of iterations every year, remaining a traditional green for about six months during which it also sprouts lush yellow blossoms then these orangey/red dry petal-like pods, then the yellow leaves that you see here, that gradually drop off and litter our front yard and then, finally, stands bare-limbed for a few months until late April or so when it all starts again.

I don't know what I want to say here, other than the tree marks time in an odd way. Everything changes, and everything changes dramatically, but nothing changes, really. I always think of Sophie when I see this tree during its yellow time. I think of how everything is always changing for her and sometimes even dramatically but how everything, too, is always the same. This is not a qualified statement, something that I believe is good or bad or sad or happy. The older I get, the more I let the qualifier things go. This, too, has nothing to do with good or bad, being faithful or lacking faith, wisdom or stupidity. This is a tree.

This morning, Sophie had another seizure that she recovered from quite quickly, except for her foot. Then she recovered from that, again.  She went to school, and I sat on her bed and sat with myself, really. If you can feel a myriad of feelings and think a million thoughts -- leaf green, flowery yellow, pod-like pink, green-veined yellow, brown-bare and dead on the ground -- then you know what I mean. I felt despair, to tell you the truth, or what feels like despair in the guise of dissociation or supreme weariness. I realized, this morning, and a bit the other day when I wrote the 22 maybes post, that I am less traumatized by the actual thing (the seizure, the paralysis, the constipation, the impacted bowel, the poopy diaper) than I am by the tail, made up of those things, that I've dragged for twenty years, that I'll probably keep dragging with me for as long as Sophie and I are alive.

Yes, traumatized and sometimes overcome. So, I sat there for a while, and then I called my father for a pep talk. I got off the phone laughing.

I'm not too good at extending a metaphor, but think tree -- green, yellow, orangey-red, yellow, brown and back to green. Think of a tail, perhaps a dragon's, its scales green, yellow, orangey-red, yellow, brown and back to green. Another day, another year, behind, today, tomorrow.

I go among trees and sit still

I go among trees and sit still.
All my stirring becomes quiet
Around me like circles on water.
My tasks lie in their places
Where I left them, asleep like cattle…
Then what I am afraid of comes.
I live for a while in its sight.
What I fear in it leaves it,
And the fear of it leaves me.
It sings, and I hear its song.
Wendell Berry

Tuesday, January 13, 2015

#6 Maybe and a Bit of Civil Disobedience

I realized only now that I didn't reassure all of you who so kindly commented on my last post about Sophie not being able or wanting to bear weight on her right leg. She went to bed last night with "the issue," but when she woke up this morning, it was not "an issue." I commented on my Facebook post in response to that, but I didn't do so here. Basically, I think we can say that the #6 Maybe from my previous post wins out this time. I emphasize this time because the initial post -- however perceived -- was meant to express the oft-maddening aspects of longtime caregiving, particularly when the person you're caring for is non-verbal or completely dependent on you. In any case, rest well. At least right now, in this moment, Sophie is walking around like normal. Who the hell knows why this has happened a couple of times? A friend asked me what the neurologist would say. I told her that The Neurologist would probably shrug her shoulders and not know. I believe I've said enough times that equal to the anguish and sorrow of learning Sophie's diagnosis and then witnessing her refractory seizures -- and I mean equal -- is the lesson learned that physicians and The Powers That Be do not know everything or even, sometimes, anything. There are moments when only brutal humor sustains me (and no, prayers do not sustain me -- neither mine nor yours, although I do appreciate the thought!) and last night was one of those times. Hence my flippant list.

Behind all humor is sadness, said Mark Twain, and that adage is so very true for me most of the time. There's also anger and frustration and weariness.


Sometimes behind humor is just plain humor. In the picture above, Oliver is shouting through his new megaphone. He spent the weekend down in Orange County with dear friends, one of whom is a sucker for all things Oliver wants and therefore bought him this real, battery-operated megaphone. Good Lord, ya'll. That thing is loud. This morning, Oliver shouted a stream of invectives (no curse words) toward the construction workers and contractors working behind our house at building another McMansion. I have to admit that it was really funny with no sadness behind it, and I felt sort of proud to be raising a hell-raiser in addition to a teenager who is besotted with his used car and a near twenty year old that so resiliently deals with seizures, drug withdrawal and weird right legs that won't obey her.

22 Thoughts On Why Sophie Won't Bear Weight On Her Right Leg

photo by Jennifer Werndorf

  1. Maybe it's just asleep.
  2. Maybe her knee is dislocated.
  3. Maybe her hip is out of its socket.
  4. Maybe it's her foot.
  5. Maybe she threw out her back.
  6. Maybe it's random and will resolve like it did yesterday morning.
  7. Maybe it's neurological.
  8. Maybe she's having constant sub-clinical seizures and forgot how to bear weight.
  9. Maybe it's the Onfi wean.
  10. Maybe she's got a tumor.
  11. Maybe the orthopedist was wrong last time.
  12. Maybe the physical therapist was wrong last time.
  13. Maybe it's polio.
  14. Maybe it's a virus.
  15. Maybe she'll never walk again.
  16. Maybe they're wrong when they say Everyone has something hard in their life.
  17. Maybe I'm an asshole to tell myself that everyone has something hard in their life, not just us.
  18. Maybe all this meditation stuff is a load of crap.
  19. Maybe all the non-attachment stuff is mumbo-jumbo.
  20. Maybe she'll stop walking entirely.
  21. Maybe she isn't going to make it.
  22. Maybe there's more to endure.

Monday, January 12, 2015

A different Charlie

I learned today from Ms. Moon's blog that today is the 51st anniversary of Charlie Watts' first drumming gig with the Rolling Stones. She also included the following video which was made last year for Charlie's birthday. Although my Holy Trinity of music is Bob Dylan - Van Morrison - Joni Mitchell, Charlie Watts is definitely up there as well. Since today was rather a dry Monday, and I have no words of wisdom or observations or tidbits or angst to impart, I'll leave you with this fine music:

Sunday, January 11, 2015

Sunday Geek

So, I think I mentioned somewhere that Henry is now a driving young man. My own trepidation at the thought of him cruising the highways of Los Angeles aside, he's also now the ecstatic owner of a used car, a humble vehicle that apparently carries some clout in its used-ness. I caught him on Friday night, just before my salon, outside actually washing the windows with water and soap. I don't think you need to know that he has never, and I mean never washed a window of a car by hand. The boy has many strengths but that sort of thing -- hand-washing a car's windows -- has never been seen in this land. Today, he bought a chirping bird that he will place on the dashboard of his sacred vehicle. I raised my eyebrows when he showed it to me, suggested that if it were Oliver who had made the purchase, there would be no end to the carping about how obnoxious that is! You're such an idiot! You're so weird! etc., to which Henry just smiled and proceeded to show Sophie, who, as you can see, completely appreciated it.

What I love about parenting is when your kids are unwitting geeks, when the self-conscious adolescent thing disappears, and they're just delighted to be alive.

Geekiness doesn't fall far from the tree, as they say. This morning I scrolled through Facebook and came upon a rare recording of one of my favorite writers, Flannery O'Connor,* reading her famous short story A Good Man Is Hard To Find. My friend Tanya Ward Goodman (inimitable writer herself, most recently of Leaving Tinkertown fame) had posted it, so I clicked and clicked and opened and settled in Sophie's purple beanbag chair and just about died from happiness.

Here's the link to the audio part:

And while you're listening, you can open up the short story and actually read along.

If you're even the tiniest bit like me, you will feel overwhelmed with gratitude and happiness, lulled by the soft Georgian accent of that titanic woman and entirely blown away by her sinister story.

Pray tell what your Sunday is looking like.

*And here's a little thing for my fellow geeks who love Flannery O'Connor and probably hate Ayn Rand -- something O'Connor wrote to a friend about Rand:

I hope you don’t have friends who recommend Ayn Rand to you. The fiction of Ayn Rand is as low as you can get re fiction. I hope you picked it up off the floor of the subway and threw it in the nearest garbage pail. She makes Mickey Spillane look like Dostoevsky.

Saturday, January 10, 2015

A Latin American Food and Marquez Feast

The photo above does small justice to the array of foods that my dear friend and caregiver to Sophie, Saint Mirtha, made for my inaugural Books & Bakes literary and food salon. Here she is preparing the empanadas, corn tortillas tinged red with paprika, stuffed with beef and potatoes and spices, then fried until crisp:

There were also Colombian arepas, pico de gallo, a brothy, beef soup called estofado de carne, a coconut chicken dish (pollo en salsa de coco), and beans (frijoles rojos Colombianos). We drank margaritas, Chilean white and red wine and finished with a Chocolate Red Wine cake -- a recipe that inspired me to pick Strange Pilgrims by Gabriel Garcia Marquez as my first Books & Bakes discussion. If you've never visited Cara Nicoletti's blog Yummy Books, please do. She's a young kick-ass butcher, writer and cook with what looks to be an amazing book coming out next summer.

Marquez' book of short stories, Strange Pilgrims, inspired a great discussion. The people who attended were really engaged, and whether they liked the book or not, had so many interesting thoughts and reactions. We all marveled over the language of the short stories, the humor in them, and above all, the seamless way Marquez moved from tight and journalistic prose into the flights of imagination that mark his mastery of magical realism. I learned so much from others' commentary and believe I managed to facilitate the discussion quite well. I have a second group of people coming in two weeks, and then Books & Bakes is on to another book, The Book of Salt by Monique Truong.*

* I have some open spots for February 13th or 27th, so if you're in the area and are interested, please email me to reserve one at elsophieATgmailDOTcom.

Friday, January 9, 2015

Anticipation: Magical Realism

 Just one glance at her face was enough for Maria to know that no amount of pleading would move that maniac in coveralls who was called Herculina because of her uncommon strength. She was in charge of difficult cases, and two inmates had been strangled to death by her polar bear arm skilled in the art of killing by mistake.
Gabriel Garcia Marquez 
from "I Only Came to Use the Phone"
in Strange Pilgrims

Skilled in the art of killing by mistake. How delicious is that, particularly those of you -- us -- who loathe the world of medicine for reasonable and unreasonable reasons.

Thursday, January 8, 2015

Books & Bakes Number 2

The Book of Salt by Monique Truong

Here's my second notice for my new business/pleasure/ecstatically doing venture. The book we'll be reading is a first novel, and I haven't read it, yet! I remember when it came out, but it passed me by, and when I was mulling over what to assign for my next salon, I went on the internets and stumbled on a syllabus for an English literature class at one of the Best Universities On the West Coast. The name of the course was Literature and Food, and one of the books listed was The Book of Salt. I read a bit more about it and was sold. I toyed, too, with assigning perhaps my very favorite novel -- Virginia Woolf's To the Lighthouse -- not just because it's incredible but also because a pivotal scene in the novel revolves around boeuf en daube, a perfect meal to make for a group. Maybe another time. For those of you here for the first time, I've recently started a literary and food salon called Books & Bakes. For January I've got two groups reading Gabriel Garcia Marquez' Strange Pilgrims, and I'll be posting pictures and notes about it this weekend. Here's how I describe Books & Bakes on my phantom website*:

Are you a lover of literature but stuck in a book group that never really discusses the book? Are you a lover of food but want to cut through the pretension of the foodie world? Do you revel in devouring both beautiful fiction and food, especially when they intersect? Are you looking for a unique gift for your loved ones or yourself? Come join a community of like-minded souls and share your love of literature and food at the monthly Books & Bakes literary and food salon. Salon size is limited to 10, so rsvp early.

A light dinner, drinks and stimulating conversation are included. 

$75.00 per person includes facilitated discussion about "The Book of Salt" by Monique Truong, related food and alcohol. 

This month's special includes a $25 discount if you bring a man to the group (a little affirmative action!). He'll pay full price!

Email me at and please share with your Los Angeles friends! 

RSVP with your email and/or contact information, which date you prefer. Payment will be expected to confirm spot and can be either mailed or charged to PayPal.  

*I have yet to create a logo, a website, something really professional yet still bohemianish. If you know of any graphic designers who don't charge an arm and a leg or might want to barter (cakes?), please send them my way!

Wednesday, January 7, 2015

How We Do It: Part LI

photo by Jenni Werndorf

Today was not a good day for Sophie. She had numerous seizures, was both tired and wired, had clammy hands and feet and appeared confused. I imagine it was the full moon coupled with -- well -- whatever. She had an off day, a bad day, one of many in her life. Here's the thing. I was hanging out in her room at some point in the afternoon and felt the tweak of irritation when I saw her have another tiny seizure -- these are tiny jerks and pauses, and they happened all day, on and off, off and on. I felt a tweak of irritation -- not at her, really, but at the situation. The monotony of it. The goddamn constancy of it. A tweak, though. Just a tweak and not the surge, the seizing of the blood in the veins, the fury, the despair. I was mindful of that tweak, what it felt like, and it felt small, like a flame on a short match. Its size -- brief, small -- took me by surprise. I felt, instead, grateful to be at home with this girl, to be subservient to her needs, her instability and vagaries. I felt lit up for a moment, but with light, not heat.

Work Blessings

I felt a surge of happiness this morning as I sat on my bed, my glasses tipping off my nose. I was going through my copy of Gabriel Garcia Marquez' Strange Pilgrims, marking off passages, taking notes, re-reading the stories that -- dare I admit it -- thrill me? I'm getting ready for my inaugural literary and food salon this Friday evening. I have ten people coming to Books & Bakes, and another ten in two weeks. The menu is planned -- a sampling of Colombian and Mexican specialties -- and tomorrow I'll shop for the ingredients that I'll prepare on Friday. While the cooking will be a pleasure, it's the reading, the delving in, the excitement of sharing what I love with others, and the anticipation of discussion with a group of intelligent people that makes my heart surge. That burst of happiness is related, too, to the blessing of work -- to doing what one loves, no matter the compensation. It's the word on the page, the feel of the book, the thrill of entering the writer's imagination so effortlessly and then sharing it.

Tuesday, January 6, 2015


I can remember the exact position of the bare, winter tree branches as they appeared through the window, how they looked like empty arms, the grey, heavy sky. I would be lying on the cheap, black couch, looking over your head. I don't remember your face.

"Home is a Medicine Unto Itself"

Gustav Klimt

“The wind blew my eyes off my face and I caught them in my hand,” my son declared, pointing to his pre-school art project. The assignment was to glue a hat, pants, shirt, mouth and eyes where they belong on a pre-drawn outline of a human body. The hat was where you would expect it, as were the mouth, shirt and pants. But both eyes were glued to the left hand.

“Wow, that’s poetic!” I replied, and wrote down the quote at the bottom of the paper with his age, “2 and a half.” Then I taped the masterpiece to his bedroom wall.

A week later he had a seizure, which turned out to be the first symptom of autoimmune encephalitis.

an excerpt from Sandra Stein's essay, Home is a Medicine Unto Itself
in The Atlantic

One of the abiding positive effects of blogging is the friends I've made, the intense relationships that have developed despite geographic distance. I met Sandra several years ago online when she contacted me after reading my blog, and in the years that followed we've exchanged emails, texts and telephone calls, sharing much of our lives, our hopes, our tribulations and dark senses of humor. Sandra's article in The Atlantic is so beautifully written, and her story -- her son's story -- is one that will take your breath away, as it took mine.

Monday, January 5, 2015

Swimming Across the Sea

I had nothing to write about today until now, when I opened the mail. I got a package from the United Kingdom, and nestled like a Matryoshka doll in ever smaller packaging and wrapping, I discovered this beautiful silver mermaid pin with a tiny pearl.

Where have you swum from, beautiful mermaid?

Thank you, lovely person from lands far away. This is a beautiful gift, a real treasure from the sea.

Thank you.

Sunday, January 4, 2015

Mother Superior and Her Kids On Sunday

Ha Ha Ha Ha!

After birthing and raising three children, now in my twentieth year, I figure I get to call myself a Mother Superior. You can, too, if you want. I'm not trying to act conceited -- just Superior. This morning, I wrangled the boys into taking down the tree and then rearranging the living room to my precise specifications. Perhaps I'm not so much a Mother Superior as the mother of Superior Sons. Despite the constant bickering and escalated shouts, the cranking up of music and the competing blares from the saxophone, the room got done. These boys even vacuumed the furniture.

Oliver then got busy making tortillas with his tortilla press. We squeezed lime juice on those little circles of corn and sprinkled salt on them, ate them hot as fast as he could make them.

And Sophie? Sophie was really happy today, less agitated, with no seizures to speak of. Knock on wood. Three times. I got a kick out of playing with her -- she loves these crazy felt mums on my slippers -- Mother Superior definitely getting some interest from one of the cloistered sisters.

Sisters and Brothers, how was your Sunday? Tell Mother Superior.


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