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!

Advice I Need to Follow

(this is a poster from World War II)

Sleep

I woke up really early this morning and lay in bed, my eyes half-closed. I have the intention to get up and meditate, but it's really only an intention today. I watch the sunlight struggle through the hedge that rises outside the window and let the blue in the room rest lightly. I doze and wake and look at the clock and doze some more.

I'm grateful for sleep and for the ease with which I do rest.

Here's a poem from John Updike. I love the ending.


Tossing and Turning

The spirit has infinite facets, but the body
confiningly few sides.
There is the left,
the right, the back, the belly, and tempting
in-betweens, northeasts and northwests,
that tip the heart and soon pinch circulation
in one or another arm.
Yet we turn each time
with fresh hope, believing that sleep
will visit us here, descending like an angel
down the angle our flesh's sextant sets,
tilted toward that unreachable star
hung in the night between our eyebrows, whence
dreams and good luck flow.
Uncross
your ankles. Unclench your philosophy.
This bed was invented by others; know we go
to sleep less to rest than to participate
in the twists of another world.
This churning is our journey.
It ends,
can only end, around a corner
we do not know
we are turning.

Tiger, Tiger

Comparing oneself to a tiger is trite stuff, but I'm going to do it. I am a tiger and not the sexy kind. This morning, Sophie woke up and had her usual bout of seizures. I felt angry about it, really angry. Ferocious, actually. I've yelled and screamed before, even while Sophie has been seizing. I'm always alone, of course, wild and free. It doesn't feel good at all, though, this unfettered energy. It's not a release. It's as if I'm a beast, a woman with only primitive urges. I hate the way I feel afterward. Sorry and ashamed in all my humanity.

I've been rereading Barbara Gill's Changed by a Child - Companion Notes for Parents of a Child with a Disability, and wouldn't you know I'd open it to this page:

Tiger Mothers

...We hear, see and feel things others don't even notice. Our experience -- with its pain, vigilance, and hard work -- has heightened our senses when it comes to our child. It is as if we have developed extra nerve endings. We are tiger mothers -- ever watchful, ever ready -- tireless to protect, provide, defend.
Sometimes we sense that others are wary of us. They feel -- and fear -- the great power within us, the fire burning in our eyes. We are tuned in to something extra, something they don't hear.

You might think that I'm proud of or happy to be a tiger. And I think most mothers have it in them to be tigers -- whether it's ever unleashed or not is beside the point. But what struck me about that passage was the sentence "Sometimes we sense that others are wary of us. They feel -- and fear -- the great power within us, the fire burning in our eyes." I am sad, sometimes, that I have become this tiger because in becoming full of fire and strength I have lost someone else. I am out of balance, my yin overcome by yang.

My fears and worries about Sophie are eclipsed by love, though, and this love is unreasonable, in a way. It's unreasonable to experience these things for over thirteen years, so unreasonable that it must be love that carries me forward.

I studied William Blake, the poet, in college and learned a lot about him from a dear person I knew a long time ago. But to round out the tiger cliche, I find it fitting to include Blake's famous poem here:

Tiger Tiger. burning bright,
In the forests of the night;
What immortal hand or eye.
Could frame thy fearful symmetry?

In what distant deeps or skies.
Burnt the fire of thine eyes?
On what wings dare he aspire?
What the hand, dare seize the fire?

And what shoulder, & what art,
Could twist the sinews of thy heart?
And when thy heart began to beat.
What dread hand? & what dread feet?

What the hammer? what the chain,
In what furnace was thy brain?
What the anvil? what dread grasp.
Dare its deadly terrors clasp?

When the stars threw down their spears
And watered heaven with their tears:
Did he smile His work to see?
Did he who made the lamb make thee?

Tiger Tiger burning bright,
In the forests of the night:
What immortal hand or eye,
Dare frame thy fearful symmetry?

Check One

Oliver made three wishes that I posted here.

The Lego helicopter and raft have come in from back order and are on their way to our house.

We're waiting on the other two.

[Update: Sophie, so far, has responded well to the medication. I don't notice any side effects and it might be my imagination (I tend to superstition and don't want to "jinx" things) but her seizures seem less severe and fewer in number.]

About superstition -- I'm certain that the southern Italian peasant inside of me (my father's parents are Calabrese) ensures that if I think too hard about good, the opposite will happen. Hence my hesitation to say out loud that this drug might actually be working????

Romance, in Spite of it All

I Limoni

Bad news is just relentless, right? Driving around today, any good feelings that I might happen to have (for a change) are insistently knocked down by what I hear on the radio or read on the front of the paper. I'm tempted to go on a news blackout but then I'd also have to stop opening my mail and paying bills. My head felt almost dizzy tonight when I was cooking dinner, dizzy with information.

I picked a lemon tonight, off of my Meyer lemon tree. When I sliced a piece off, the juice sprayed out and onto my hand, and hours later it still smells. Clean and flowery. I love lemons. And I love this poem by the Italian poet Eugenio Montale.

The Lemon Trees

Listen; the poets laureate
walk only among plants
of unfamiliar name: boxwood, acanthus;
I, for my part, prefer the streets that fade
to grassy ditches where a boy
hunting the half-dried puddles
sometimes scoops up a meagre eel;
the little paths that wind along the slopes,
plunge down among the cane-tufts,
and break into the orchards, among trunks
of the lemon-trees.
Better if the jubilee of birds
is quenched, swallowed entirely in the blue:
more clear to the listener murmur of friendly
boughs
in air that scarcely moves,
that fills the senses with this odor
inseparable from earth,
and rains an unquiet sweetness in the breast.
Here by a miracle is hushed
the war of the diverted passions,
here even to us poor falls our share of riches,
and it is the scent of the lemon-trees.


See, in these silences
in which things yield and seem about to betray their ultimate secret,
sometimes one half expects
to discover a mistake of Nature,
the dead point of the world, the link which
will not hold,
the thread to disentangle which might set us
at last
in the midst of a truth.
The eyes cast round,
the mind seeks harmonizes disunites
in the perfume that expands
when day most languishes.
Silences in which one sees
in each departing human shadow
some dislodged Divinity.
But the illusion wanes and time returns us
to our clamorous cities where the blue
appears
only in patches, high up, among the gables.
Then rain falls wearying the earth,
the winter tedium weighs on the roofs,
the light grows miserly, bitter the soul.
When one day through a half-shut gate,
among the leafage of a court
the yellows of the lemon blaze
and the heart's ice melts
and songs
pour into the breast
from golden trumpets of solarity.

Creative Genius

Like just about every woman on the planet, I read Eat, Pray, Love by Elizabeth Gilbert, and while I liked the book, I wasn't one of its biggest cheerleaders. I don't want to go into it here, like writing a review, but one of my dearest and oldest friends sent me the link to this video, and what Gilbert says about the creative process is just so, so interesting. Tell me what you think.

Wishcasting Wednesday

I wish for healing -- for my daughter, for my sons, for my husband, for myself.

Go on over to Starshyne to join Wishcasting Wednesday!

What do you wish for?

A Bottle of Pills and a Box of Rain

The new medicine that I posted about last week came in today, and I reluctantly went over to the drugstore to pick it up. I had to sign some form that said I had received counseling from the pharmacist regarding my prescription and when I asked about it, the clerk sent the pharmacist over. He didn't have much to offer in the way of counsel, given that it was the first time he'd filled that particular drug. He kindly offered, "I believe it should stop the seizures where they start," and I smiled and nodded my head and thanked him.

I believe it should stop the seizures where they start.

I told the boys at dinner tonight that we should say a prayer that the new medicine will help stop Sophie's seizures.

"Do you think she might talk, then?" Henry asked. He always asks this question.
"Will she still have special needs if her seizures stop?" Oliver asked.

Henry said a short prayer and we ate our dinner.

I believe it should stop the seizures where they start. I repeated this to myself, but it was more like every other thought. The "other" was I can't believe we're giving her another drug. I don't want to give her another drug.

Sophie had a terrible day, and you'd think that would be enough to compel, impel me to just give her the med and be done with it. But I stalled until shortly before her bedtime when I opened a small plastic cup of applesauce and spooned it into her mouth, the pill a bland pink oval slipped into her mouth.

Done.

I believe it should stop the seizures where they start.

On another note, we drove around in the rain again, today, listening to the Grateful Dead. We had a good conversation going about what, exactly, was a box of rain. Oliver said it was God's tears, and Henry said it was impossible. In any case, we all LOVE the song.

Check this out

My friend Denise has a gorgeous essay over at Literary Mama. Please read it and let her know what you think.

Culture Vulture Again

I went to Royce Hall again, tonight, to hear Edward Albee. I bought a series of tickets to The Writer's Word, and this was the second (the first was John Updike, whom I wrote about here). I have a fantastic seat in the middle section of the third row, so I can really see the writers' faces. And I love this. I happen to sit between two other "single" women, and both of them bring hefty books to read while they're waiting for the show to begin. I find this curious and while I'm not exactly self-conscious about attending a literary event by myself, I wonder if I look like them to other people. Middle-aged, that is, alone in an auditorium on a Saturday night. The best thing is that it's relaxing; I'm me, the girl with her nose buried in a book, scribbling periodically on pieces of paper, unaware or at least comfortable in my solitude and nerdiness. I'm not the wife of someone or even a mother with three children. I'm not even strong. I'm just me.

The woman on my left read a book titled Ceremonial Violence which is either really interesting or just plain weird. I couldn't read the title of the other woman's book, but she had a small pile of cough drops on her lap along with a pocket pack of tissues. She kept falling asleep, but I tried not to look her way. I didn't want to embarrass her.

Edward Albee is a small man and tonight he came on stage jauntily. The first thing I noticed was bright green socks and construction type shoes. His shirt was of an indeterminate color but his tie was really wide and striped a sort of pinkish red and green. He wore a jacket that was either leather or plastic. I couldn't tell. His face was tan and lined and hawkish, broken by a bristly white mustache. He was interviewed for over an hour by a very pompous, funny Englishman (don't remember his name) and almost all of his answers were long and funny and to the point. "Art should be useful," I think he said at one point or many times, emphasizing how much he dislikes entertainment that is "frivolous and mindless." He talked a lot about The Theatre, a subject that I confidently know nothing about, but everything he said was interesting and informative. His characters tell him how to write and he thinks about them for a long time before he actually sits down to write. A really long time, I think he said. When someone asked what he did when he got "stuck," he said that he doesn't get stuck because he doesn't "start too soon." I found that really interesting, something to mull over, as we writers generally feel some sort of obligation to be constantly writing, practicing the craft, exercising the muscle, etc.

I love these old writers. I love their process and the fact of their work. I love to sit in an audience with like-minded people of all ages who chuckle unselfconsciously. Whenever I feel my slick, modern, deprecating self popping its nasty head in to say this is all so pretentious or who are we all kidding, thinking that art matters?, it is stifled by its gentle counterpart. It's the only thing that does matter that thin, wispy, wiry voice says. My reverence for The Writer is perhaps too romantic, but I left the hall with Edward Albee's voice in my head and it felt clear and true.

Friday Night Music

I saw Bob Marley a year or so before he died and still remember his crazy hair flying around the stage.
Emancipate yourself from mental slavery, he sings, No one but ourselves can free our mind

Happy Birthday, Bob Marley.

Bringing Out the Big Guns

I normally hate gun and war imagery like The War on Cancer, The War on Drugs, etc., but we're trying a brand, spanking new antiepileptic drug this weekend. For the first time in probably seven years. Sophie has been on at least fifteen drugs in various combinations (at one point, a brutal three drugs all at once) and none of them have worked. Even remotely. The side effects of these drugs, coupled with the dashed hopes were enough that about seven years ago, I decided that we wouldn't put another one in her body unless Jesus himself offered it to us. There actually weren't any drugs left in the arsenal (there's some more war imagery) to try, though, so waiting for Jesus wasn't difficult.

Well, Jesus still hasn't appeared, but The Neurologist is "excited" about this new drug and I really, really like The Neurologist (this, too, is something rare). I don't know a single soul who has been on this drug, but it was recently added to The Arsenal by the FDA. And we're trying it.

Wish us luck.

[from a paper about it: Rufinamide is an investigational triazolederivative antiepileptic agent that is structurally dissimilar to currently available antiepileptic medications. Its best characterized mechanism of action is the limiting of excessive firing of sodium-dependent action potentials.]

How's that for some war imagery?

The Afterlife and Such

I was talking to a good friend yesterday as we strolled through a park, telling her about a recent visit I had with a priest at my church. It happened a while ago, and I've hesitated to tell about it because it's just so, well, embarrassing. One morning, I dropped Sophie off at school -- her aide was absent AGAIN and on the way in, I'd let go of Sophie for a second and she had fallen on the ground and scraped her hand. I felt terrible and sometimes it's the smallest things that spark the big ones. The big one being a sort of mini-car breakdown, where I'm weeping profusely and lamenting my life, yada, yada, yada. Anyway, I drive right by my church on the way home, and I had the crazy idea to stop by the parish office and perhaps get a little comfort, a little prayer, a little counseling. I had in mind a certain priest who I really like, really admire, who challenges me to think and believe and want to live a life of goodness and faith.

I didn't get that priest.

I got the one I don't much care for, the one who I believe doesn't possess an iota of spirituality or insight. When I sat down across from him and told him of my sorrow and difficulty "pulling it together," he told me that as a Christian, as a Catholic, I must wait for the next life. That sorrow and suffering in this life, borne by me or by Sophie or by whomever, is just preparation for the next, much better life.

The next life.

And I don't think he meant it in the reincarnation way.

He also said some mumbo-jumbo about going to church more, etc., but he didn't offer up a prayer, an appeal, nothing. I do believe, though, that the universe sent me to him, in particular that morning if only to snap me out of my despair and help me to realize that I'm FINE, THANK YOU VERY MUCH! I literally ran to my car and gunned it out of there, windows open to breathe the perfect, perfect Los Angeles air. I could have whooped with relief!

During the weeks that have followed this "session," I've had many an occasion to reflect on The Priest's words. The ones about the afterlife. I don't know about heaven or hell, but I've always loved the passage in the Bible (where? I don't remember) when Jesus says, "The kingdom of God is at hand." I imagine his hand, palm up, held about a foot or so from his body. The WORLD beyond his fingertips.

I like to think that the kingdom of God IS at hand, right here, in the present. And when I researched a bit online, I found this passage, which seems to confirm what I thought:

The Kingdom of God is at Hand, or near us. The word "near" in our English translations of the Scriptures, comes from a Greek word: "Engiken," which when translated means "has come near. It is important for us know these Hebrew differences in meaning, to help bring further understanding to our Lord Jesus Christ's teachings, both in the early Church and in todays Church.

If we translate that word NEAR back into Hebrew, we get an entirely different meaning and understanding. The Hebrew equivalent of the Greek word: Engiken, is: "KARAV," which means: "To come up to and be with," or "to be where something or someone else is." Why is this so important, you might ask?

Well, if we use the English or Greek word meaning NEAR, the implication is that the Kingdom of God is sometime in the future, not yet here. Yet the Hebrew word KARAV means the exact opposite. It give us the meaning: "IT IS HERE! IT HAS ARRIVED!" The Kingdom of Heaven or the Kingdom of God is always -- present tense -- it is NOW, according to the Hebrew usage and the understanding of the Jews at the time of Jesus and also within rabbinic usage even today.

But before I go all Zen on you, I'll post this poem by Walt Whitman, who I wish was in that parish office when I needed a reminder:


Of The Terrible Doubt Of Appearances

by Walt Whitman

Of the terrible doubt of appearances,
Of the uncertainty after all, that we may be deluded,
That may-be reliance and hope are but speculations after all,
That may-be identity beyond the grave is a beautiful fable
only,
May-be the things I perceive, the animals, plants, men, hills,
shining and flowing waters,
The skies of day and night, colors, densities, forms, may-be
these are (as doubtless they are) only apparitions, and
the real something has yet to be known,
(How often they dart out of themselves as if to confound me
and mock me!
How often I think neither I know, nor any man knows,
aught of them,)
May-be seeming to me what they are (as doubtless they
indeed but seem) as from my present point of view, and
might prove (as of course they would) nought of what
they appear, or nought anyhow, from entirely changed
points of view;
To me these and the like of these are curiously answer'd by
my lovers, my dear friends,
When he whom I love travels with me or sits a long while
holding me by the hand,
When the subtle air, the impalpable, the sense that words and
reason hold not, surround us and pervade us,
Then I am charged with untold and untellable wisdom, I am
silent, I require nothing further,
I cannot answer the question of appearances or that of
identity beyond the grave,
But I walk or sit indifferent, I am satisfied,
He ahold of my hand has completely satisfied me.

Changed by a Child

You know how when you're ambling around, sipping a cup of coffee from Starbucks, sitting in the driver's seat of the car with the door open and not wanting to get out because the sun is shining perfectly on your face and outstretched leg that's perched on the handle of the door and you know that inside are unmade beds and bills piled up and the thought, forever lodged, about what to do with Sophie, about Sophie, for Sophie.

Well, five minutes ago, there I sat. And I sighed (there's nothing like a good sigh), stood up and out of the car and went inside. When I checked my email, one of my dearest friends had sent me this on Facebook, and if that isn't what Jung calls "synchronicity," I don't know what is.

Accommodation by Barbara Gill

A relentless southwest wind blows in the Laramie Range of Wyoming. It has blown for eons, scraping the mountains bare of soil, carving out the landscape. It causes trees to grow at an angle and lifts into the air things that ought to stay on the ground. It complicates all manner of human activity. People who live there successfully have reached an accommodation with the wind; some who couldn't went insane.

Disability is a steady west wind in our lives. It permeates our existence, altering the topography of our days and causing our families and our life to grow at an angle. Without judging the wind as good or bad, we can observe the truth of it, acknowledge the force of it in our lives, and take the measure of our accommodation.


from the book "Changed By A Child"

2 Poems, Apropos of...

'Faith' is a fine invention...

"Faith" is a fine invention
When Gentleman can see—
But Microscopes are prudent
In an Emergency.

I like a look of Agony...

I like a look of Agony,
Because I know it's true—
Men do not sham Convulsion,
Nor simulate, a Throe—

The Eyes glaze once—and that is Death—
Impossible to feign
The Beads upon the Forehead
By homely Anguish strung.

--Emily Dickinson

Purple Heather

I'm going to follow a fellow blogger's lead and make a list. That way I'll get a post up and perhaps some clarity to my thoughts. And maybe I'll get some feedback from you. Here goes:

1. Sophie is still not doing well. Day to day is getting really hard. I mean just thinking about the day and being thankful if it's a good day. I know that I should but I'm finding it hard to maintain.

2. I've heard of two very sick little babies, one who is fighting for her life and another who lost hers. And both parents of these two little babies have enormous faith.

3. My son had his first reconciliation yesterday, and I went to confession for the first time in over thirty years. I confessed to feeling despair, which I understand is a grave sin. I know this is supposed to be between you and the priest and I take the risk of offending my devout Catholic readers, but here goes. The priest told me to spend more time with my children as my penance. How weird is that? I don't think I'll be going to confession any time soon again.

4. I'm taking Sophie to The Neurologist this week and we're discussing A New Drug. We haven't tried a new drug in over seven years (mainly because there weren't any to try but also because after the last horrendous trial, I swore that I would only try another drug if Jesus himself offered it to us).

5. Hope springs eternal. Because I actually do hope that the new drug will be the one.

6. I have a 5,000 word entry for a literary contest to finish tonight. It's actually the first three chapters of my book and it needs to be postmarked tomorrow. I'm never this last minute, but I'm going to do it.

7. I played basketball with Henry and Oliver this afternoon, and it was exhilarating. I'm a terrible athlete and hate sports, in general, but I channeled my inner Tar Heel and the boys were impressed.

7. I listened to Van Morrison today and when I closed my eyes and drifted, I remembered some things, a life long ago, my hair falling down my back and dreams, leaves gently turning, a wooden tower and wild mountain thyme. And that was good.

Purple Heather
by Van Morrison (Hard Nose the Highway)

Well the summertime has gone
And the leaves are gently turnin
And my love I wanna take you
To the place heart-a-yearnin
Will you go, lassie go

And we'll all go together
In the wild mountain thyme
All around the blooming heather
Will you go

And I will build my love a tower
At the foot of yonder mountain
And visit by the hour
From a lonely wooden tower
Will you go, lassie go

And we'll all go together
In the wild mountain thyme
All around the blooming heather
Come on

At the foot of yonder mountain
I will visit by the hour
With the lily of the valley
Go, will you go, lassie go

And we'll all go together
In the wild mountain thyme
All around the blooming heather
Will you go, lassie go
Will you go
Will you go, will you go
Will you go, lassie go

(couldn't download the actual song, but go listen to it if you can...)