Spooky Genes, Part 2

My father, Michele Aquino

1948ish, New York

My son, Henry

2015, Los Angeles

Are you weirded out?

Happy Halloween!

Ease in Failure

Marconi Center, Tomales Bay 2015

The Sweet Taste of the Night

When I woke up my head was saying, "The world
will pardon my mush, but I've got a crush"
and went outside. The wind was gone.
The last of the moon was just up and the stars
brighter even than usual. A freighter
in the distance was turning into the bay,
all lit up. The valley was so still I could
hear the engine. The dogs quiet, worn out barking
all night at the full moon. Their ease in failure.
The ship came out the other side of the hill
and blew its horn softly for the harbor.
Waking a rooster on the mountain. It went
behind the second hill and I started back inside
the farmhouse. "All the day and night time,
hear me cry. The world will pardon my emotion,"
I sang from my bed, up into the dark, my voice
unfamiliar after not speaking for days.
Thinking of Linda, but singing to something else.

Jack Gilbert

Smells Like Bullshit, Episode 33,456,897

We're laboring over here -- laboring to get Sophie off the drugs that she was put on over eight years ago, numbers 21 and 22. I'm not going to tell you about it -- I have about ten times that many posts on this blog that recount the trials and travails. I rolled my eyes today when I read an article about presidential aspirants' medical marijuana platforms. With the exception of one Republican (Rand Paul, who's one weird mother in all other respects and therefore not someone I would even remotely consider voting for) and nearly all Democrats (whose "scores" vary from Hillary's C to Bernie's A), the statements were identical in their ignorance. I'm not going to talk about that, either, because immediately after reading Chris Christie's platform, I downed all the bottles of Sophie's cannabis oil, shot myself up with a few syringes of rectal valium, popped a couple of Onfi and ran my fingers over the Vimpat dust in the pill cutter we're using to divide the thing so that we can wean her off of it. I rubbed that on my gums.

I'm feeling fine.

A friend of mine told me about a ProPublica site called Dollars for Docs. Have ya'll heard about this? Basically, the amount of money a doctor gets from a pharmaceutical or medical device company for peddling their wares is public information, so you can type in any doctor's name and see just what he's being paid to do, along with treating you or, in my case, your child. Sophie's doctor was paid a little over $300 in 2014 by a drug company, but the head of the UCLA Pediatric Neurology Department, a doctor who is quite cordial, whom I've interacted with for nearly twenty years and who is superficially supportive of cannabis oil for the treatment of epilepsy (and I say superficially because there are plenty of neurologists in his department who are openly resistant if not downright condescending about it which leads me to believe his leadership behind closed doors is -- well -- different) received $100, 771 in 182 payments from August of 2013 to December of 2014.

Guess what pharmaceutical company gave him the most money as "honoraria?" For "travel and lodging?" For "speaking" and "education?"

Lundbeck.

$38,781

Guess what drug Lundbeck makes?

Onfi.

Dr. Sankar also received handsome amounts for peddling the vagal nerve stimulator and several other drugs, including Vimpat.

You can't make this crap up.

I don't think I need to state that this has got to stop -- that pharmaceutical companies should not pay doctors ANYTHING to promote their drugs or devices. And if this is impossible, doctors should be required to wear uniforms plastered with all the pharmaceutical and medical device companies that sponsor them -- a sort of NASCAR-style lab coat and scrubs. That way, when we bring our babies to them, we can just scan their bodies and know with whom we're really dealing.

I'm not sure why we, as patients or caregivers, can possibly trust these doctors to act in our best interests or in our children's best interests when these physicians are being paid large sums of money to peddle and promote drugs, medical devices or surgery.

Is this out of line to post on my blog? Will I be lobotomized, perhaps, for expressing my disgust and frustration? That was, in fact, a neurological procedure performed as late as the mid-1950s on those deemed mentally ill and ironically was discontinued when pharmaceutical companies stepped in.

Pardon me while I peel my child off the floor where she's seizing as she withdraws from Onfi and Vimpat and then go work my ass off to obtain and then pay for the cannabis oil that has actually helped her, even as politicians make asinine comments about marijuana and physicians call for "more research" and Children's Services if we step out of line and start giving the oil ourselves.

This is not the time to tell me that some drugs are great. I know that. Nor is it the time to stand up for good doctors. I know they are out there. I also don't pretend to imagine that my rant will make one bit of difference (even as I type, I can hear the fascistic drone of Donald Trump's voice on the television in the living room, the king of capitalism himself -- taken seriously).

What I do know is that I will trust no one in the medical community to know and do what's best for me or my children if they're on the dole from pharmaceutical or medical device companies.

Now I'm going to lie down on the bed in a stupor and contemplate the universe.

How We Do It: Part LVI

Somewhere along the I-5 in parched California

This morning I lay in my bed in the darkness with halfway thoughts. The light came only halfway into the room through the lowered slats of the blinds. If I live to be 85 years old, I'm only halfway. As children we are as unaware of the halfway as we are, at the halfway, of the end. Thresholds are always that. Liminals. I heard a breath, a halfway cry, a grunt. I slipped my robe on and walked to Sophie's room. She was lying on the floor, face-down, her arms in a fencing pose, quietly seizing. I turned her over, wiped the drool from the side of her face, the tendrils of wet hair and picked her up, lay her on the bed. Sophie has a seizure every morning, and I imagine it happens in the halfway when the light and the tides and the moon and the shifts of the earth on its axis conspire to affect the most exquisite, the tendrils of nerves, reaching for all of it.  She is halfway off the drugs she was on one year ago. She will be okay.



it launched forth, filament, filament, filament 
by itself

Walt Whitman

Writing by Writers and Tomales Bay

Tomales Bay, 2015

I received a fellowship to attend the Writing By Writers workshop at Tomales Bay. I worked over five days in close study with fourteen goddesses and one poet-god under the beautiful stewardship of Lidia Yuknavitch. She, along with Pam Houston, Mark Doty, Steve Almond, Dorothy Allison and Greg Glazner were all there, reading, teaching, talking, dancing and eating alongside us.

It seems, today, like a dream. I am over-full. Leaking over and out.

Hustling Suffragette

I watched the soon-to-be-released film Suffragette this morning with maybe three other women in a cozy screening room in Beverly Hills. Those seats were cream-colored leather, wide and leaned back. The movie was moving and beautiful and informative, even for someone like myself who knows quite a bit about the English suffragette movement. It made me cry, and it made me angry in the same way that a war movie does -- the stupidity of it all, the energy wasted on oppressing human beings.  It never ceases to amaze me -- the mediocrity of oppression -- how men went to such lengths to keep women subservient, stripping them of their property, their dignity and even their children. The actors Carey Mulligan, Brendan Gleeson, Helena Bonham Carter and Ann-Marie Duff were all wonderful, and Meryl Streep had an excellent cameo. At the end of the film, a very effective list of the dates of universal suffrage for different countries in the world scrolled across the screen. I won't give it away, but it's pretty damn shocking.

After the screening we drove over to the Four Seasons Hotel in Beverly Hills. I pulled into the driveway, right behind a shiny black Bentley with a license plate that read HUSTLR. I wondered if Larry Flynt was still alive, and later -- much later, like 5 minutes ago -- I googled "Larry Flynt's car" and sure enough, that was it. I looked for a man in a wheelchair when I walked through, but no Larry.

The three other women and I took an elevator up to a suite of rooms filled with twenty-somethings, none of whom spoke to us or even batted an eye or looked up, to tell you the truth, from their phones and laptops. They were arrayed all over the suite of rooms at tables and desks, on small sofas and standing in windows. I guess it was all the publicity and marketing people for the movie -- the business apparatus. I passed a small bathroom with some high stools in front of mirrors and make-up spread out on a table. Again, no one really spoke with us, and everyone seemed to know what they were doing, although it didn't look like they were doing much. I'm sure they were organizing, and making calls and arranging press junkets -- perhaps even hustling? No pun intended.

Again, the business of movie-making -- something to mull over -- suites in the Four Seasons to entertain the press and to high tea some bloggers. It's hard for me to not feel there's something gross about it all.

Eventually, we were led to another and larger room with two long tables laden with high tea -- or at least high tea, Four Seasons Beverly Hills-style. I saw some cucumber tea sandwiches, but I also noticed some lobster salad on blinis that placed me square in Beverly Hills in the Four Seasons in 2015.  Back in the last century, I was High Tea Girl at the St. Regis Hotel in New York City. I  was a real hustler, then, no pun intended, making literally tens of thousands of sandwiches, and scones and Devonshire cream and tiny little tarts and chocolates (yes, real chocolates where you temper the chocolate and pour it into thick, frosted French molds that I later tapped on the edge of the marble pastry station and they'd fall out, shiny and perfect). But I digress. I took a scone and some cream and some lemon curd, filled a glass with French bottled water and placed a lime wedge inside of it, using silver tongs. Then I sat down at a round table with four other women and waited for the director, the producer and the screenplay writer to come in for the "roundtable discussion."

They were all lovely, and our conversation was spirited and interesting and mostly about how little people really do know about the suffragette movement, how much young women, in particular, take for granted their relative freedoms and how harrowing the path to suffrage. The filmmakers were then hustled, no pun intended, out of the room for their next meeting, so I ambled back downstairs, through the lobby and gave my ticket to the valet who brought up my sexy White Mazda, into which I jumped and drove off back to my normal life -- which I vastly prefer.

I do recommend that you hustle to see Suffragette -- take every boy and girl and woman and man you know -- and then say a little prayer of thanksgiving for those women that went before you. Oh, and exercise your right to suffrage, when the time comes. Hustle. Vote.









(I was not paid to write this post, but I did get a free screening of the movie, as well as delightful treats!)

Suffragette

How tiresome, no? Those black states? Much has changed and much remains the same, I guess. That's the way conservatives like it, though, isn't it?

Politics aside, I finally got an invitation from a public relations/marketing person that I could respond to with a resounding YES! Tomorrow morning, I am going to an exclusive screening of the upcoming movie Suffragette and then a tea at the Four Seasons with the director and the producers of the movie. I'm very excited -- here's a clip:

Pondering with Eileen Myles

When I'm writing the poem, I feel like I have to close my eyes. I don't mean literally, but you invite a kind of blindness and that's the birth of the poem. Writing is all performance. Something's passing through. When people talk about formal constraints, that's just technology, that's fashion. I like fashion, but you keep adjusting those things to let the other thing happen. The performance is us writing what's using us, remarking upon it.

Eileen Myles, The Paris Review, No. 214

Yes, something passing through -- I feel, too, as if I'm channeling words, worlds, allowing them space. There's ease in that allowance. The light in my bathroom is an old one, a 1920s fixture set over the door with a metal chain that you pull to turn it on and off. Lately, you can easily turn the light on, but it's difficult to turn it off. In lieu of buying a whole new fixture, I've learned how to gently pull it in an intuitive way, feeling in the space for the perfect point. I take a breath in and could swear that when I breathe out and pull, simultaneously, it clicks off. If I do it more casually -- let's say as I'm running out -- or less mindfully (which is generally always when you're going into and out of your bathroom), pull the chain, simply, but the light stays on. It's like I've missed my chance and have to wait a bit,  the light implacable, before going back and trying again. I place my fingers on the silver beads of the chain and feel it -- that space. Breathe in and out and pull. Blind. Something's passing through. I'm not sure you can or want to live that way, though, with such concentrated intention, the simultaneous blindness and flow.

 

Looking Together United Them

I decided to serve dinner at the table for this month's Books & Bakes. One of the consummate scenes in Virgnia Woolf's To the Lighthouse is the dinner where all the family and boarders are gathered round the table and Marthe serves the boeuf en daube and Mrs. Ramsay thinks her thoughts and Virgina Woolf so brilliantly mines the mind, the female mind and writes them down for us in a sort of epic of the domestic.

... of grapes and pears, of the horny pink-lined shell, of the bananas, made her think of a trophy fetched from the bottom of the sea, of Neptune's banquet, of the bunch that hangs with vine leaves over the shoulder of Bacchus (in some picture), among the leopard skins and the torches lolloping red and gold...Thus brought up suddenly into the light it seemed possessed of great size and depth, was like a world in which one could take one's staff and climb hills, she thought, and go down into valleys, and to her pleasure (for it brought them into sympathy momentarily) she saw that Augustus too feasted his eyes on the same plate of fruit, plunged in, broke off a bloom there, a tassel here, and returned, after feasting to his hive. That was his way of looking, different from hers. But looking together united them.

The boeuf en daube did indeed take three days to prepare, but most of that was done in the fridge where it marinated. I used my friend Cara Nicoletti's recipe from her blog Yummybooks. *

And she must take great care, Mrs. Ramsay thought, diving into the soft mass, to choose a specially tender piece for William Bankes. And she peered into the dish, with its shiny walls and its confusion of savoury brown and yellow meats and its bay leaves and its wine, and thought. This will celebrate the occasion -- a curious sense rising in her, at once freakish and tender, of celebrating a festival, as if two emotions were called up in her, one profound -- for what could be more serious than the love of man for woman, what more commanding, more impressive, bearing in its bosom the seeds of death; at the same time, these lovers, these people entering into illusion glittering eyed, must be danced round with mockery, decorated with garlands.

"It is a triumph," said Mr. Bankes, laying his knife down for a moment. 

We had the above boeuf en daube (prepared, literally, over three days), French Cheese and Crackers, Parsnip Soup, Mussels in Cider, Apple, Kohlrabi and Celery Salad with Walnut Oil Vinaigrette, Savoy Cabbage with Caraway and Cider and French Apple Cake for dessert.**

Cheers with Calvados!








Oh, and while we're looking together, here's my son Henry before the Homecoming dance. I think we can be united here -- however superficially so -- on the dash of this kid. Lest you think he's all beef, I assert that the beauty is as much on the inside as out.

* Cara is an adorable, kick-ass butcher and baker and writer and has just published a gorgeous book about food and literature called Voracious.   I'll forgive her ambivalence about Virginia Woolf because -- well -- you need to go out right now and buy it (and read the acknowledgements).

* I got many of the recipes from the delightful Seattle cookbook: A Boat,  a Whale & a Walrus. The French Apple Cake, especially, was amazing.

Be a Man

Be distant.
Be overwhelmed.
Tie your identity to your work.
Never cry.
Argue.
Compete.
Live the cliche.
Edit everything.
Don't communicate.
Give up.
Buck up.
Rob a bank.
Fuck a whore.
Sail your boat.
Cook your soup.
Flex your toes.
Wrap your knee.
Strut your stuff.
Pick a compartment.
Put it there.
File it away.
Climb in.
Slam the door.
Cock your gun.
Cock your comb.
Your cock.

The Accidental Thanatologist

That is my dear friend Jody and her daughter Lueza. Jody was the first friend I made after Sophie was diagnosed with infantile spasms in 1995 in New York City. Jody's daughter Lueza was only a few months older than Sophie, and she, too, had been diagnosed with infantile spasms and severe cerebral palsy. Jody and I walked the city streets with our girls in carriages and strollers. We placed our babies next to one another in cribs, played music for them, held them and one another. We went to a mothers support group at the hospital on the east side. We despaired and we exulted and we laughed with rue about our new lives. Jody sent me a subscription to a newsletter in those pre-Internet days -- it was called Mothers From Hell -- and was obviously geared toward our sort. Dark, funny, dramatic, despairing and resilient. We both moved to California, her to the north and me the south. We had more babies, she a daughter and me, two sons. We had long spaces and distances but stayed friends, talked for hours and hours on the phone, laughed more often than cried, loved one another and our beautiful daughters and sons.

Lueza died unexpectedly on April 4, 2011. I was driving up Fairfax, crossing Beverly Blvd when I heard from Jody, and I took a sharp right into a bank parking lot, drove down the ramp into darkness, sat in my car and wailed for a half an hour. Whenever I pass that corner, that bank, that ramp into darkness, I think of Lueza and her tremendous light.

Jody is an immensely talented actor, singer and writer. She is adding pieces to her blog, The Accidental Thanatologist, that you must read. It is, as she says, a walk through love and catastrophe.

I love you, Jody and am grateful for your constancy. And your writing is smashing.

Old Books, Old Memories, Fresh Paint

Haysoos, Maria and Josef!

I'm having the old homestead painted for the first time since we moved in nearly fourteen years ago. Those are only some of the books that I had to pull down from only some of the shelves. Oliver told me that I had too many, and Henry reached up for the ones on the tallest shelves and wondered if I'd read any of them lately. Probably not, I told him. But they are who I am. I could give a flying foo-foo about that Mondo Londo woman who tells you to get rid of everything unless you can say that it brings you joy. The little French paperbacks of Balzac and Sartre and Rimbaud brought me nothing but agita when I read them thirty years ago, but when I run my fingers down the yellow pages and bury my nose, I remember Dey Hall and how hot it was in the fall without air-conditioning, how insane Dr. Daniel, with his American South French accent, pounded on the table and shouted OUI, OUI, OUI, HELL OUI! if we answered a question correctly, and how hard Sarah and I laughed when we quizzed one another on idiomatic expressions -- all 350 of them -- useless then and now. Il n'y a pas un chat dans la rue! we'd repeat, over and over, downing our Tabs and Mello Yellos, Sarah's curls riotous and as disheveled as her backpack whose contents slipped out and left a trail wherever she walked. I read La Nausee while swinging on a hammock on the rickety porch of a house we called The Shanty where I lived with my friends Missy, Hilary and Julia during my junior year. I felt literally nauseous while I read, the first time the body met the mind and one recognized the other and the exhilarating freedom of being alive. I'd meet my boyfriend Luke under the trees whose arching boughs had convinced me to give up my spot at the University of Virginia -- I loved the UNC campus, not the UVA grounds, loved the brick of Dey Hall, not the formal colonial architecture of Jefferson -- and we'd lie there on the grass in the quad, reading Auden and Williams and Yeats, Li Po and Tu Fu. They are who I am.

Cast my memory back there Lord, sometimes I'm overcome.

Things People Say: Beautiful Edition*

I stopped by my friend Craig's house today to check out his xeriscaping (that sounds sort of obscene or personal, but for those of you who live in areas of the world where it rains more than once every four years or so, it's what we do to cope with drought) and also had the pleasure of seeing his friend Tom. You might remember some years back when I wrote about Tom and his husband Ed whose 80th birthday party I had the privilege of attending and providing the cake. Tom and Ed have been together for well over forty years and listening to their stories about growing up gay in the thirties and forties of the last century, as well as being a couple in this one, were sobering, hilarious and fascinating. Both are the dearest and warmest of men, and it's such a privilege to run into either of them, even if was about 110 degrees outside. Today I had Sophie in the car, and when Tom walked up to it, I introduced him to Sophie. He said, Hi, Sophie! and I quickly told him that she wasn't able to talk but that she understood him. Tom said, just as quickly, Well, we have enough talkers on this earth, so that's just fine! 

Then the skies opened up with rain, cleansed my soul, and plumped up my heart so that I jumped out of the car and pledged my eternal troth to Tom for being such a beautiful, inclusive man. Just kidding on the rain part. I would have planted a giant kiss on his lips if my own weren't so damn dry. I did admire Craig's xeriscaping, though, and shed a bit of rain on my own when I drove away. I've said it before, dear Reader: sometimes it IS the small things that can make or break you.










* Things People Say is a device I use throughout my book in progress, but they're generally stories of more outlandish things people say when faced with Sophie's disability. It's been my experience that the sort of comment that Tom made is a rare exception to the rule.

Saturday Ellen Bass Poetry Day

Pray for Peace

Pray to whomever you kneel down to:
Jesus nailed to his wooden or plastic cross,
his suffering face bent to kiss you,
Buddha still under the bo tree in scorching heat,
Adonai, Allah. Raise your arms to Mary
that she may lay her palm on our brows,
to Shekinah, Queen of Heaven and Earth,
to Inanna in her stripped descent.

Then pray to the bus driver who takes you to work.
On the bus, pray for everyone riding that bus,
for everyone riding buses all over the world.
Drop some silver and pray.

Waiting in line for the movies, for the ATM,
for your latte and croissant, offer your plea.
Make your eating and drinking a supplication.
Make your slicing of carrots a holy act,
each translucent layer of the onion, a deeper prayer.

To Hawk or Wolf, or the Great Whale, pray.
Bow down to terriers and shepherds and Siamese cats.
Fields of artichokes and elegant strawberries.

Make the brushing of your hair
a prayer, every strand its own voice,
singing in the choir on your head.
As you wash your face, the water slipping
through your fingers, a prayer: Water,
softest thing on earth, gentleness
that wears away rock.

Making love, of course, is already prayer.
Skin, and open mouths worshiping that skin,
the fragile cases we are poured into.

If you're hungry, pray. If you're tired.
Pray to Gandhi and Dorothy Day.
Shakespeare. Sappho. Sojourner Truth.

When you walk to your car, to the mailbox,
to the video store, let each step
be a prayer that we all keep our legs,
that we do not blow off anyone else's legs.
Or crush their skulls.
And if you are riding on a bicycle
or a skateboard, in a wheelchair, each revolution
of the wheels a prayer as the earth revolves:
less harm, less harm, less harm.

And as you work, typing with a new manicure,
a tiny palm tree painted on one pearlescent nail,
or delivering soda or drawing good blood
into rubber-capped vials, twirling pizzas --

With each breath in, take in the faith of those
who have believed when belief seemed foolish,
who persevered. With each breath out, cherish.

Pull weeds for peace, turn over in your sleep for peace,
feed the birds, each shiny seed
that spills onto the earth, another second of peace.
Wash your dishes, call your mother, drink wine.

Shovel leaves or snow or trash from your sidewalk.
Make a path. Fold a photo of a dead child
around your Visa card. Scoop your holy water
from the gutter. Gnaw your crust.
Mumble along like a crazy person, stumbling
your prayer through the streets.

Ellen Bass

Driving Around the Shitty Thoughts

So, two college shootings today already. Maybe as we plan for Henry's college, we should boycott those schools that are in states with loose gun restrictions? I read somewhere that a group in Australia was calling for a boycott of tourists to the United States because of our embarrassing servitude to the NRA. Was that real news or something from The Onion?

Of course, I'm under no delusion that it makes much of a difference but it'd be good for the spirit to align oneself with people whose moral choices are similar, who wish the NRA would dry up or all its members come to their senses, buy a nice bit of land in some godforsaken part of a godforsaken state (Texas, maybe?) and set up all the shooting targets and End of Days scenario sets they please. They could start a Re-enactment sort of club like the Renaissance Fair and hunker down in their homes with their guns, waiting for invaders so they can practice protecting their kids. They could even set up camps with fake schools and teachers and principals, have a lockdown and re-enact those drills I've been reading about where kindergartners have to be really, really quiet and pile into their cubbyholes during lockdown drills.

I said on Facebook that from now on I'm going to get all my news from The Onion because it makes me feel sane. Here's what I read today that cracked me up. 

Stepping Out of the Eddy

I wish you all could come to next week's Books & Bakes salon. I'm reading Virginia Woolf's To the Lighthouse for perhaps the bazillionth time and discovering that it's even more amazing than it was the last time. It might be one of those books that illuminate your present no matter your past. It does for me. I'll be making what Mrs. Ramsay serves at the dinner party around which the book revolves, but I won't tell you what it is -- honestly, if you want to get into the great woman hive-mind, you should read this novel.

When doors slam, they slam and I jump.

But what have I done with my life? thought Mrs. Ramsay, taking her place at the head of the table, and looking at all the plates making white circles on it. "William, sit by me," she said. "Lily," she said, wearily, "over there." They had that -- Paul Rayley and Minta Doyle -- she, only this -- an infinitely long table and plates and knives. At the far end, was her husband, sitting down, all in a heap, frowning. What at? She did not know. She did not mind. She could not understand how she had ever felt any emotion or affection for him. She had a sense of being past everything, through everything, out of everything, as she helped the soup, as if there was an eddy -- there -- and one could be in it, or one could be out of it, and she was out of it. It's all come to an end, she thought, while they came in one after another, Charles Tansley -- "Sit there, please," she said -- Augustus Carmichael -- and sat down. And meanwhile she waited, passively, for some one to answer her, for something to happen. But this is not a thing, she thought, ladling out soup, that one says.

Feeling Stretched and Mature (and a CBD Update)

La Jolla, CA 1996

The work of the mature person is to carry grief in one hand and gratitude in the other and to be stretched large by them.

from The Geography of Sorrow: Francis Weller on Navigating Our Losses.*

I finally picked up Sophie's emergency medication from the drugstore today, almost five days after I requested the prescription. I was going to complain to The Earnest Pharmacist about the colossal communication breakdown but decided that I didn't have the energy for it. I'm generally a dog with a bone in these matters, but I also pick my fights with exquisite precision. The drugstore is within walking distance, and the convenience of it weighs more than perpetuating the conflict. I noticed -- with rue -- that my co-pay was only $15 and wondered if I was getting the $.99 Store version. I recalled a time nearly a decade ago when I'd had to purchase it on a weekend, couldn't get insurance approval (back in the days when I stockpiled rectal valium for crazy parties I threw), and paid $1400 for two doses. Apparently, Diastat is a relative bargain these days, so any of you Rectal Valium Party Lovers should stock up. I'll put it on the top shelf of the medicine cabinet in the bathroom where it'll hopefully sit for a few years before expiring.

Sophie appears to have come out the other side of this drastic cut in Vimpat. She's been smiling again, her palms are dry (they get clammy and cold when she has multiple seizures) and aside from some weakness in her right leg (attributed to seizures as well and perhaps Todd's Paresis), we might take another bit away this weekend.

I can say today, though, that since beginning CBD in December of 2013, she has about 90% fewer tonic seizures, 100% fewer myoclonic clusters, takes 65% less Onfi (the benzo) and nearly 75% less Vimpat.

My grief is in the blurring of the boundary between past and present, as is my gratitude. I am stretched large.


*Thanks to my friend Kari for posting this quote on Facebook and inspiring me.

The Anecdotal Present

Who cares whether the new toys from Ikea are meant for young children? I felt only a twinge of sadness today when I roamed the aisles and wondered whether Sophie would still like these things. She had something similar years ago, but I had to give them away when her seizures got so bad. I was always afraid that she'd have an atonic drop and slam down into them or otherwise hurt herself. Over a period of about ten or twelve years, Sophie cut her head open at least five times, needing stitches, knocked out a couple of teeth, one permanent, broke a tibia, cracked a wrist, cracked her nose and had countless bruises, black eyes and contusions. It's the little things, the small improvements, that mean the world, and these aren't the things that generally impress the neurologists. That Sophie's seizures have been reduced to where she can safely play with some toys is probably proportionate to our successful CBD story being reduced to anecdote, at least with the neurology community and the ridiculous marijuana naysayers. Hell, the small improvements might not impress those of you who are terrified of disability, who can't imagine either being so or caring for someone and still having a fulfilling life. We live in a culture that often doesn't prize difference, particularly the cognitive kind. How many times have you heard or thought At least I don't need a wheelchair! or I could never handle a child with a disability. I realize that there's a learning curve, and I'm grateful to be at the end of it.  I probably would have wanted to kill myself twenty years ago -- well, maybe that's a bit harsh and insensitive -- if I knew I'd be picking out baby toys for my young adult daughter. I'm not sure I would have been able to keep on keeping on, which is probably a testament for all of us, no matter our situations, that living in the present is all we can do. If you pile on some gratitude as you're basking in it, all the better. And if your present isn't so great, be grateful that it's just for now and will pass.

Thank you.

Thank you.

Thank you.










Update on Vimpat Withdrawal: So far so good, although Sophie seems really tired and even depressed. She has a lot of weakness in her right leg and doesn't want to walk on it very much. She isn't having seizures, though, which I will attribute to the emergency THC and CBD. Otherwise, I'd have to blame the Vimpat and then I might really off myself as we kept her on that damn drug for more than seven years.

Care-giving, Drugs and Guns: Part 4,590,234

That happened this weekend. I sat in front of some fancy cameras while my old college friend, Sophie Sartain, a renowned documentarian, shot a short piece for PBS about caregivers. You might remember Sophie's documentary Mimi and Dona, about Sophie's aunt and grandmother that I wrote about a while back. Click on the title and read a bit about it, watch the clip and then mark your calendar for the PBS showing on November 15th.

The film spotlights the challenges of aging caregivers of people with intellectual and developmental disabilities—some 4.6 million Americans, 75% of whom live at home with family—and details the ripple effects of Dona's disability on three generations of a Texas family.

Can I tell you that while I am most appreciative of a spotlight, particularly when it has to do with advocacy for long-term caregivers of the disabled, I hate the spotlight, the camera and all of the jazz that goes with it. No matter the seriousness of the topic or how well I might articulate my feelings and ideas, a bad picture or one in which I look too -- well -- too, sends me spinning, and I want to run for the hills with poetry. I take these caregiving issues very seriously, but humor me when I ask you to pray to your god that when my little segment appears on the PBS special, I've remembered to hold my chin down, but not too far down, and that my mouth is busy talking, eluding my jowls' resting pose. Because, you know, it's all about me.

That also happened this weekend. I took Oliver and his friend to Malibu. Henry didn't come because he is otherwise always occupied with seventeen year-old activities, and none of these include hanging out with your little brother and your mother. Sophie didn't come because she was having a particularly difficult day dealing with drug withdrawal. She stayed at home and dozed off and on all day with Saint Mirtha. The THC is helping, ya'll, and I think we're through the worst of it. She's not having nearly as many seizures as she had the first four days, and the hives have disappeared as well. Damn that Vimpat and the pharmaceutical clusterfuck it rode in on. During this whole shebang, I tried to get a refill of Sophie's Diastat (an emergency medication of rectal Valium) because her old one had expired (we haven't had to use Diastat in the nearly two years she's been on CBD), but The Powers That Be (namely the insurance company, the federal government, and the pharmacy) couldn't get their crap together, and I'M STILL WAITING FOR THE STUFF. The Earnest Pharmacist Who Just Graduated From Pharmacy School told me over the Consultation Counter very earnestly, It's a controlled substance, ma'am. I'm really sorry. I won't belabor the details -- you've heard it all from me countless times. I found it exquisitely ironic, though, that I am jumping through hoops and making numerous phone calls involving Famous Neurologists at Famous Hospitals, Private Insurers, The Federal Drug Administration, etcetera, etcetera yet haven't made headway to get this refill of a life-saving medication that my daughter possibly needs. Let's not belabor the marijuana part here, either. What if it were a gun dispensary? I imagine I could pick up a military grade weapon and then walk home and order me some ammunition online to protect my family from invaders as we live and work and travel in the big shitty, no problem. My right to do so is protected by The 2nd Amendment. My point is, of course, NOT that we need to lift all regulations and make government (of the people, by the people, for the people) the villain. My point is that there is more difficulty in getting a shitty benzodiazepine prescribed for my daughter's seizures by her physician than there is for me to get a gun and some ammo.

Anyhoo.

Oh, yeah. Malibu.

It was divine.

Reader, how was your weekend?

Caregiving Chronicles

to Heather McHugh

Your mind goes to what you might have been doing, what sort of career, what you'd wear and how much you'd earn. You think about that first job, so long ago, the stockings and mustard-colored pumps, the boyfriend back at the old church in East Nashville, just over the bridge. He was writing novels, parsing out Blake, and you were thinking about railroads and utilities, feasibility and warding off the good old boy gestures, that guy Bruce in the corner office with the curly hair and lecher walk. You went to a conference once, at the World Trade Center in New York City and it's just too, too, to mention that both towers fell -- that one in your mind, and then those others. Your mind goes to possibilities dashed but is filled up, again, by what came, what's still coming. Sophie couldn't go to school today. She's suffering from withdrawal. I can't go to work today because of that, and whose fault is it really? I've lost twenty years of wages. No one talks about that -- at least not out of the predictable and tired construct of the working versus the stay-at-home mother. Stunning vulnerability. No one talks about choices when there is no choice. We don't have choices. I wouldn't have it any other way, though. I can yearn for some kind of sea change in the way our society treats handles perceives reckons with deals screws pushes away the cost of caregiving. Or I can fill out the forms, get on my knees and swallow. Someone mentioned Chronic Traumatic Stress Syndrome to me the other day. Acronym is CTSS. I'm not complaining caresplaining. It is what it is.

The Yellow Tree at Gratefulness

My monthly post at Gratefulness.org is up.

You can read it here.