Spring

With just a little bit of rain, this is what happens in the desert southwest. A different kind of spring.

And here's a poem by Mary Oliver:

Praying

It doesn't have to be
the blue iris, it could be
weeds in a vacant lot, or a few
small stones, just
pay attention, then patch


a few words together and don't try
to make them elaborate, this isn't
a contest but the doorway


into thanks, and a silence in which
another voice may speak.

Literaturwurst

I went to LACMA (the Los Angeles County Museum of Art) today with Sophie and two girlfriends. We wandered through the Art of Two Germanys exhibit. The above photo is one I found on the internet (couldn't take photos in the museum) of my favorite thing in the show. Here's a description:

Dieter Roth (Swiss, born Germany, 1930-98). Literaturwurst (Martin Walser: Halbzeit) (Literature Sausage), 1968. Book of cut-up novel, water, gelatin and spices in sausage casing, overall: 20 11/16 x 16 3/4 x 4 ¾ in (52.5 x 42.5 x 12 cm). Publisher and fabricator: the artist, Reykjavik. Edition: 50 with different formats and texts. Dieter Roth Foundation, Hamburg. © 2006 Dieter Roth Foundation, Hamburg.

So this artist cut up literature and made it into sausage. Kind of disgusting. Definitely alluring. I want to make some literature sausage of my own. This is what I'd cut up:

medline reports
prescription medicine labels
insurance bills
insurance statements of claims

Add some fat and spices, bitter and coarse and then stuff it all into intestines. Hang it on a hook to dry out.

A good friend of mine who's also a terrific therapist (do you think I need one after that sausage recipe I created?) reminded me today of the adage of being "good enough." In reference to mothering, I understand that and aspire to at least accept that I am good enough.

But when it comes to Sophie and her life, I'm thinking that it's NOT good enough. It's not good enough that she's on a new drug, still having really big seizures and suffering some side effects. It's just not good enough.

And that led me to another of my favorite sayings, or my twisted version of it:

Instead of "it could be worse," I think:

It Could Be Better.

Bring on the Posse

Remember my post about Sophie's health insurance? Review it here. You might also like to read the comments because I had the beginnings, I think, of a real posse.

And remember when I told you about the new drug that Sophie is taking? Here and Here.

Well, last Friday I went to our neighborhood Rite-Aid to refill said medication and the pharmacist told me that the drug was "backordered" and his distributor had no idea when it would be available. He then told me to "call around" and see if other drugstores had it in stock.

I called CVS, Walgreens and a couple of other obscure places with no luck. When I began my enquiry each pharmacist said in that inimitable Indian English accent, "What drug is that? Can you spell it? I don't know this drug?"

Given that Sophie is "Patient #140," I'm now starting to think that she might actually be the only patient currently on Banzel (who comes up with these names?). I spoke with the Neurologist who directed me to a hospital pharmacy. They had it.

So, this morning I drove over to the hospital and parked in the parking lot. I went up to the third floor and into the drugstore. I handed over Sophie's insurance card, and the cashier disappeared for a few moments. When she returned, she handed me a receipt and my card.

"Your insurance company says this drug is not on the formulary. The drug costs $589.00." (it's a one month supply).

My blood pressure began to rise.

"What do you mean, they won't cover it? It's a refill!" I said.

"Sorry. You'll have to contact your insurance company."

So I whipped out my cell phone and waited for about fifteen minutes as the battery wore down. I'm not going to belabor this post, but the insurance agent politely argued with me for a few minutes and then decided that the drug "was covered" and proceeded to give the authorization to the pharmacist.

I got the drug.

I'm sick of this shit. There. I said it.

Poem of the Day

Maybe it's the luck of the Irish (of which I have none, blood that is), but when I went on The Writer's Almanac today, there was one of my favorite poems, the one from which I've poached a title for this blog:


Adam's Curse
by William Butler Yeats

We sat together at one summer's end,
That beautiful mild woman, your close friend,
And you and I, and talked of poetry.
I said, 'A line will take us hours maybe;
Yet if it does not seem a moment's thought,

Our stitching and unstitching has been naught.
Better go down upon your marrow-bones
And scrub a kitchen pavement, or break stones
Like an old pauper, in all kinds of weather;
For to articulate sweet sounds together
Is to work harder than all these, and yet
Be thought an idler by the noisy set
Of bankers, schoolmasters, and clergymen
The martyrs call the world.'

And thereupon
That beautiful mild woman for whose sake
There's many a one shall find out all heartache
On finding that her voice is sweet and low
Replied, 'To be born woman is to know—
Although they do not talk of it at school—
That we must labour to be beautiful.'

I said, 'It's certain there is no fine thing
Since Adam's fall but needs much labouring.
There have been lovers who thought love should be
So much compounded of high courtesy
That they would sigh and quote with learned looks
Precedents out of beautiful old books;
Yet now it seems an idle trade enough.'

We sat grown quiet at the name of love;
We saw the last embers of daylight die,
And in the trembling blue-green of the sky
A moon, worn as if it had been a shell
Washed by time's waters as they rose and fell
About the stars and broke in days and years.

I had a thought for no one's but your ears:
That you were beautiful, and that I strove
To love you in the old high way of love;
That it had all seemed happy, and yet we'd grown
As weary-hearted as that hollow moon.

The Persistence of Angels

I haven't been here in a while and it's not for lack of stuff to post. There's always stuff. There's always complaints, a litany of them. Conversations gone awry, words overheard. There are things to revel in, too, like the Los Angeles sun in March and my children's curls. Sophie is plugging along on the new medication and I'm wondering whether her energy is the good kind, freed up from constant seizing, or the bad kind, a frantic side effect of the medication. Who the hell knows?

One never knows. I'm thinking about William Blake and Wallace Stevens. The poems about innocence and joy and the ones about the mind of winter and gubbinal.

On my way to eat Mexican tonight, I sat in one of the backseats and gave the ten year old Boy the coveted front seat (why do children love the front seat so much?). While sitting and gazing out the window, I listened as the boys shouted Audi, Audi, with their father, playing a silly car game with so much competition and exhilaration I'm stunned. Never was a cliche more apt than that of men and cars. Anyway, the phrase the persistence of angels came to mind and I jotted it down, quickly, in my notebook.

The persistence of angels.

I hate talk of "angels," actually. The silly, saccharine kind of talk. The wings and the religious, the titles on hundreds of self-help books, the weak attributions given to the dead. Call me cynical, but don't tell me about angels (except the majestic ones drawn by William Blake, see above). I had an essay published in "Spirituality and Health Magazine a while back. It was about angels, really, and I hesitated to even use the word. Did I use the word? I can't remember -- but what I do remember is that the magazine re-titled my piece "Listening to Angels." I hated that title with all its implications.

I'm so NOT an angel-person.

But still, the persistence of angels.

I'm thinking, mainly, of the two women who help me to care for Sophie. I am stressed of late on how much longer I'll be able to pay for them. Times are tough, as most people know. My husband has opened a new business. I'm no longer getting help from a certain source. I've borrowed from Peter to pay Paul and Peter has no more money. I've gotten a few ominous sounding letters from the California Regional Centers, warning of impending budget cuts. Respite funds will be severely impacted. I tell my friends that I need to look on help with Sophie as important as a utility. I wouldn't budget out electricity, would I? I feel a bit guilty about this, too. I'm aware that I'm incredibly fortunate to have any help at all. I tell myself that somewhere someone is caring for her own Sophie in a hut or maybe under a cardboard tent. By herself.

Back to the ange -- I mean women. They come into my house and lay their hands on The Girl and coo in her ear. They comb her hair gently and cradle her head when she seizes. They look her in the eye and laugh when she reaches her hand up to touch their faces. They love her. They save me -- gently, persistently.

The persistence of angels.

Flight 2457

I get on the plane after waiting for two hours in the Dallas airport. I have already finished a Redbook magazine and move on to Yoga Journal. I am parsing my reading material, saving the good stuff for last. The stewardess, or flight attendant, has very long blonde hair that appears teased and sprayed. She's wearing a very short skirt, made of some sort of uniform material, stiff and navy. She's wearing matte tights and almost-stiletto heels. I wonder what it feels like to walk up and down the aisle in shoes like that and whether her thin hips only brush the sides of the seats as she walks. She looks over at me and tells me to wait and the woman behind me bumps into my back and apologizes. I wait and then the blonde tells me to go ahead and I walk down the aisle and find my seat -- 17C -- an aisle, and after I push my carry-on into the overhead, I sit down and buckle my seatbelt. The woman sitting next to me, in the middle is Asian or Filipino. I can't tell, but she's got a rosary laced through her fingers and a sheet of paper with some prayers to Jesus on it. I sense that she's afraid but I don't feel kindly toward her because she's got her arms planted firmly on the armrest and isn't sharing it. She keeps her arm on the armrest, insistently, aggressively claiming it and I want to tell her that airline protocol demands a sharing, a slight give and take but she'll have none of that and doesn't budge, even when I press my arm up against hers. When the plane takes off she fingers her beads and her lips move and then the plane is up and she leans over to put away the rosary and paper -- the Lord has done His work and saved us from crashing, so far, and while she's bent over, I put my arm right there, where hers was. And I've got it. Later in the flight when the flight attendants come by with headsets and then drinks and snacks, she asks questions with obvious answers. "We have cheese and crackers," the flight attendant says, "for $4.00." The lady next to me asks for crackers, for free, whether she can have them. She asks me, like I have all the answers, and I want to say to her, as if I were talking to my children: "Didn't you just hear what she said? Why don't you LISTEN?" I'm not sure why I'm feeling so unsympathetic, but I really am and it isn't until I'm fully immersed in my T.C. Boyle that I let her fade from my peripheral vision and acquiesce. My left arm is resting lightly on my leg, having given up the fight for the armrest. When the plane begins its descent she pulls out the rosary beads and the prayers and moves her lips, silently, and the plane lands, safely.

The Selkie

So hope for a great sea-change
On the far side of revenge
Believe that a further shore
Is reachable from here.
Believe in miracles
And cures and healing wells.

From The Cure at Troy by Seamus Heaney

The last movie I saw before I gave birth to Sophie on March 8th, 1995 was based on a story about selkies called "The Secret of Roan Innish." A weird and wonderful movie, it would become almost emblematic for me after Sophie was born and we found ourselves on the path that would lead us to California. Celtic mythology relating to the sea is magical, and what has always fascinated me were the stories of selkies -- seals who shed their skins and take human form. A female Selkie leaves her skin and comes ashore as a beautiful maiden, and while most sea creatures in myth are frightening or hostile, seals, with their soft, mournful eyes are transformed into gentle earthly beings. If humans capture her skin, the selkie is forced to stay human and is described, generally, as a fine, wistful woman. If she finds her skin, however, she immediately returns to the sea, leaving those she loves to mourn for her.

Sophie's hair is soft and curly and her features are fine. She holds herself delicately, almost gingerly, and is often described as otherworldly. When we began taking her to an osteopath in southern California after a good year's worth of fruitless medical treatment in New York, we noticed that her symptoms subsided by the ocean. Fourteen years later, to this day, Sophie is transformed by the ocean. The moment her bare feet feel the sand, she pulls insistently toward the water. We have said that the water is pulling her toward it, so dramatic is the change in her level of alertness. She doesn't have seizures by the sea. She looks out, over it and smiles a half-smile. I like to think that like a selkie she is searching for her lost world and that she is actually lost in ours. She shed her skin and was born to me, pulled unwittingly into a world that insists on keeping her.

We went to the ocean today, Sophie and I. We walked on the sand and down to the water. Sophie lifted her head and really gazed out to the sea. Happy Birthday, my Sophie-girl, my selkie.

1475

I just read that it's Michelangelo's birthday today and thought I'd take a break from reading about job losses, sinking fortunes, etc. and remember the time I visited Florence, Italy and saw, for the first time, the sculptor's David.

I wrote about it here, along with my favorite painting, Fr'a Angelico's Annunciation.

A Poem

My blogger friend Jeneva at Busily Seeking...Continual Change wrote a beautiful poem over at Literary Mama. I read it the other day and can't get it out of my mind. It's difficult in the way great poems are difficult; the words are meant to be read over and savored. Thought about, chewed on.

A Good Man is Hard to Find

Henry is my oldest boy and sort of my oldest child given that Sophie isn't really "older" than he in anything but age. Sophie will be fourteen this week -- good Lord -- so today Henry and I went shopping for a present to give her. From him. Henry's relationship to Sophie is something to marvel. While he goes through long periods when he doesn't pay much attention to her (normal, I suppose for a ten year old boy with a sister), he never fails to greet her in the morning and say good-night to her before bed. Henry has a sunny disposition -- really, there's no better word to describe him. He was born filled with joy and hope and, well, sun. He has a broad, freckled face and a broad, easy smile. He wishes on dandelions and birthday candles that Sophie could talk. He throws pennies into fountains and wishes that Sophie could talk. When he went to Catholic school, he prayed that she would talk. I'm certain that when he prays for her now, he prays that she would talk.

But back to shopping for Sophie's birthday present. We found a thin little necklace, a strand of pink string with a tiny angel bust at the center made of gold. It was a "wish necklace," meant to be wished upon and worn until it wears out.

Henry said How can Sophie wish for something when she doesn't talk?

I said You can help her to wish for something.


He said I'm going to wish that she could talk.

Of course.

Later, riding home from basketball practice, he showed me that he has a loose tooth. He hasn't had a loose tooth in a long time and felt pretty excited about it. I asked him whether he hoped the tooth fairy would come when it fell out, but I said it sort of jokingly, assuming that he still didn't believe in such things. (I mean, really, how do they believe in a tooth fairy to begin with?). Henry then told me that he didn't think there was a tooth fairy and that I put money under their pillows when they lost a tooth. I didn't say anything but smiled. He looked over at me and said, "Do you?"

I guess this conversation all leads up to the incredible innocence that just about breaks my heart. As he walked from the bathroom to his bedroom, his hair wet from the shower, his legs long under his tee-shirt, he said good-night to me and gave me a kiss.

Has there ever been anyone who had seizures and talked? he asked. Or wait, has there ever been anyone who stopped having seizures and didn't talk?

Breaks my heart but in the good way -- breaks it to bursting.



As for the title, "A Good Man is Hard to Find" here's the relevance:
There's a new biography out about Flannery O'Connor and an interesting review of it at Salon (you can read it here).

Number 140

I'm back from New York and will post about it later (maybe) -- lots of walking the streets, a benefit that did pretty well for the cause, the creepy Joker photo of Bernie Madoff leering down from every newsstand in New York City, the incessant talk of said Madoff and my growing impatience with this story because I think it distracts from the tens of thousands more who've lost jobs and retirements, etc. and I'm also tired of hearing how nervous the really, really rich people are.

Anyway, I'm done posting about New York.

I talked to The Neurologist in the airport as I waited for my bags to come around the carousel at JFK. Even though I'd flown over three thousand miles to get away, some conversations just have to happen. I asked her whether the increase in "big" seizures and decrease in "little" seizures was acceptable. I told her that I hated ambiguity in antiepileptics -- that if a drug works, it works, right? Seizures stop and the stopping is dramatic.

That hasn't happened.

The Neurologist and I discussed the possiblity that the drug was helping with the little seizures but that the brain was thinking up new ways to have big seizures. Hmmm. She felt that we should give it more time. I acknowledged that the positive changes -- the lilt in Sophie's step, the alertness in her eyes, the reduction in the constant daily clusters of spasms -- made me hopeful.

We're giving it a few more weeks and then we'll reassess. In the meantime, I've made another appointment to see The Homeopath in Arizona at the end of the month. I'll tell you about that later.

Now I have a joke. I was rereading a medical paper titled "Rufinamide for generalized seizures associated with Lennox-Gastaut syndrome" (fun reading, right?) and understood the study was done on 139 persons. The study was done in Cleveland and the average age of those studied was around 12. Since we put Sophie on rufinamide, I've visited numerous epilepsy/seizure disorder websites and posted enquiries about it, asking whether anyone had a child on it or whether anyone had tried it.

I haven't received a single reply.

I am now wondering whether Sophie is Patient Number 140.

Just wondering. And that's a picture of a guinea pig up there.

Off To a Beloved City

I'm leaving in the morning for New York City, my favorite place in the world (except, maybe Florence, Italy) and won't be blogging for a few days. I'm going to the People Against Childhood Epilepsy gala on Thursday night. I helped found this organization many years ago -- you can read more about it by clicking here.

I've packed my bags, stacked up the old New Yorkers to catch up on and somehow micro-managed my kids' various activities so that The Husband doesn't go too nuts trying to do it all. I placed a call to The Neurologist and wrote her an email asking for some advice and clarification about this new drug that Sophie has been taking for a few weeks. I haven't heard from her, yet.

This is what I think: I DON'T KNOW.

Sophie has been having fewer and less intense seizures of a certain kind and more of another. She walks with a quicker step and looks pretty bright-eyed. But those big seizures, occurring 1-3 times per day just kill me. All of us. We're throwing those little pink pills in her mouth faithfully, but it feels more like this:



The dart appears to have completely missed the board.

Maybe it's too early to tell?

It's a crap shoot -- the anti epileptic drug game, and we've played it before.



Let's hope we raise some money on Thursday night to refine the game.

A Nervous Breakdown Hat

I'm laughing at this poem this morning and, for a change, NOT because I need to put on a nervous breakdown hat. I'm just laughing because.

What She Was Wearing

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

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

and these are my arson gloves

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

exactly

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

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

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

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

by Denver Butson

Hopeful Parents

I'm posting over at Hopeful Parents today, a new site for all parents but especially the ones of special needs kids.

It's for all those who are hopeful, trying to be hopeful or just need some help being hopeful.

The new website is pretty great, so go on over and check it out. And tell your friends!

Click here!