Still Wondering (with another green photo)

I just read about the New Hampshire senator -- whose name I can't recall -- among others, whose "numbers" are plummeting because they failed to pass the most basic of gun control laws two weeks ago. She claimed that voting YES would "place unnecessary burdens on law-abiding gun owners and allow for potential overreach by the federal government into private gun sales." I wonder whether she has a tiny crush on the head of the National Rifle Association or at least is petrified of him. Are the people who claim that better mental health screening needs to be done in this country before we worry about gun control not aware of the statistics that show only a tiny percentage of gun violence is due to "mentally ill persons" or are they just trying to duck the fact that they're kow-towing to corporate pressure? And fear? I wonder if our health insurance will become more affordable in 2014 when those health exchanges open and those of us in the individual market, still getting reamed by the big insurers, will be able to join these pools. I just got the bill for the minor skin surgery that I had a few weeks ago, and I'll tell you something. I wonder if we're going to be able to afford to pay for any medical treatment at all given the astronomical co-pay due. I wonder if I made the right decision to lower my insurance coverage last year with a higher deductible and lower premiums. I wonder if it wouldn't be worth it to pack it all up and head to a socialist country. I hear that austerity programs aren't working over there, either. I wonder if finishing War and Peace before my fiftieth birthday was such a good idea. I wonder if I'll make it with two teenage boys in the house for the next eight years or so.  I wonder if starting Sophie on a medical marijuana regimen will change everything or if my hopes will be dashed to smithereens for the millionth time. I wonder if my sense of humor will finally give out. I wonder if we all start meditating, we might change the world. Evidently, my sense of humor prevails.

Just wondering

So, I listened to the POTUS this morning while sitting in my car in my driveway. He was speaking at a press conference about those starving prisoners of Guantanamo and what to do, what to do. I don't really understand why this is such a problem for some -- the holding of hundreds of men prisoner in a dank place somewhere in Cuba without charging them with a crime for years and years and years -- and then I know why this is a problem. It's because we live in a country where it's more like do as I say than do as I do, a country where torture became legal and basic rights of due process were suspended because you don't mess with the United States, where even the most reasonable of the conservative justified crimes of war, absolving them and those who perpetrated them -- look, how cute the last POTUS looks with his new grandbaby! -- where those in power, backed by the inane, let drop the most basic of gun control objectives in the name of our Second Amendment rights and where, I'd say, fear rules the day. What if the Chechnyian American boy and his brother had opened fire at the Boston Marathon with machine guns legally obtained and killed scores of people that morning instead of packing pressure cookers with nails and metal and then setting them off as bombs? Would they have been charged with owning Weapons of Mass Destruction?  Would the entire city of Boston been shut down as the  National Guard roamed the streets searching for the killers? Would the NRA have come out and said People kill people, not guns! And would the politicians and the people that prop them up have bemoaned the lack of proper mental health treatment in this country in lieu of just removing or making more difficult the ability to buy and use Weapons of Mass Destruction?

Just wondering.

Out there in "qarrtsiluni"

I was inspired by this photo:

photo credit: Andy Duncan/CU Independent/Associated Press

to write a short prose poem, and it was accepted at the online literary journal qarrtsiluni. Today, it's posted there along with an mp3** of yours truly reading it. Here's the link:

When Bears Fall From Trees








**Thank you, Mike, for recording it for me. And I'm still going to garden naked one of these days and scare away any would-be buyers of your home.

This

You can read the poem here. You must read the poem here. I don't know about you, but it made me suck in my breath -- what's that called -- a gasp.

FGS

So, Sophie has started drinking a bit better, but now she's having laughing seizures. They're called gelastic seizures, and  hence a clue to the title of this blog post. Sophie goes through weird periods where she has them off and on for days, so I'm thinking that the refusal -- or inability -- to drink is also neurological. It would be nice if when she broke out into a huge smile and then a cackling laugh, our hearts would be lightened. But, there's something faintly gruesome about the laugh and the smile -- Wikipedia likens the sudden laugh or smile to being sardonic rather than joyful -- so my smile is perhaps strained, and the boys generally look away.

Here's a second clue to the title: I'm sick to death of seizures and thinking about what to do about them. First person to guess what the title stands for gets my copy of War and Peace when I'm finished reading it. Don't knock yourself over.

Moon Face

The Brothers are playing a game called "Plaguing" on their devices where their objective is to keep a disease from taking over the planet. I guess I should confiscate their devices and make them read or play Parcheesi, but I'm feeling grateful that there aren't any sounds of violence coming from their room or bickering. If they can be united in their virtual quest to eradicate the plague from the world on a tiny screen, AMEN.

Sophie drank a bit yesterday, under the patient coaxing of Saint Mirtha, so I'm not going to worry about that today. Last night, I lay on her bed and read through page 75 of War and Peace. Sophie was so bored that she fell asleep.

I took the picture at the top of this post last night, as I lay on my bed with Oliver. He tends toward the existential hysteria right before bed, and while there are times when I'm able to talk it out of him, there are other times where I'm hard put to be patient and basically tell him, emphatically, to Be Quiet and Call it a Day! Last night, just after I told him that, he started to laugh and we took the photo and decided that I have a moon face. AMEN.

Henry just showed me that he had eradicated the earth's population and had thus achieved victory on his device. I evidently misunderstood the objective of the game. Clearly, I need to confiscate the devices and force my sons to read or play Parcheesi. AMEN.

A Saturday Morning List

1. The ladder outside my bedroom window and the boot right there at the top, where A Man is busy trimming the hedge between my house and The Neighbor's, prompted me to wish that it were Daniel Day Lewis' boot, the Daniel Day Lewis who played the main character in the movie version of Kundera's The Unbearable Lightness of Being. I believe his name was Tomas pronounced Tomash and he was washing a window on an apartment building, and he caught sight of the woman inside, and before you knew it he had climbed inside and then he had seduced the woman.
2. Anyhoo.
3. On the advice of a friend (one of my many drug mules who help me to ferry Sophie's meds from Canada), I have finally bought a copy of War and Peace and have decided to complete it by my fiftieth birthday in late August. So far, so good. I'm on page 14. 1021 pages to go. This is in lieu of losing fifty pounds by my fiftieth.
4. Anyhoo.
5. The Husband has a miraculous Saturday off, so we've already divvied up the baseball game duties. I'm signed up for the noon game with Oliver.
6. Sophie is on her third or fourth day of a liquid strike. We don't know what's wrong with her, and it's difficult to shake water and juice into her resisting mouth. We took her to the doctor and nothing, apparently, is wrong. She has no infection in her ears, throat or mouth, that the doctor could see. She has no fever. She has, evidently, a $220 virus. I've gone through the stifled panic that I usually go through when Sophie isn't feeling well or acting "normal," where I imagine that it's the beginning of the end for her. I woke up this morning, though, feeling not so great myself, so I'm excited that perhaps it is indeed a virus and not that some new neurological complication has begun and the next thing you know we'll be having to have a permanent IV line or feeding tube and the seizures won't stop, etc. And you thought I was so calm, so amazing, right?
7. Anywho.
8. I spent four out of five weekdays off-kilter due to potentially stressful activities -- the removal of my stitches, the SSI meeting, a job interview and the conservatorship meeting -- and each one went as well as it could go. I believe that calls for an open thanks to the universe and all those who made it happen. I am grateful.
9. Now, if only Daniel Day Lewis would climb through my window, everything would be perfect.

Bougainvillea, Conservatorship and The Ministry of Silly Walks

I yanked my car hard to the right, parked it and jumped out to take this photo. Pink, shocking pink paper -like bougainvillea against a blue sky. I just drove back from Pasadena, where I attended another conservator clinic. The foundation holding these clinics and helping us to gain guardianship of Sophie is incredibly efficient and well-organized. It's also free. Praise the good lord on that one. The universe is abundant. Basically, we're given a folder with stacks of paper, documents that we have to go through and sign, one after the next. When we're finished signing, we're told where and when to show up next. The people sitting around the table are Hispanic and Vietnamese, African-American and Australian. We all have a child, recently turned eighteen ,who for various reasons cannot make decisions for herself, and we all share the rueful smiles and sighs that those caught in interminable bureaucracy learn to sustain themselves. No one argues when the elderly volunteer woman tells us not to open our packets until she tells us to do so. The Husband, Sophie and I will make our court appearance in June, but before then, Sophie must be served a petition, a stack of papers, basically, that someone over eighteen years of age must hand to her. Literally. The elderly lady demonstrates this particular course of action with a young man in a wheelchair in the room. She takes the stack of papers, says the boy's name -- he is busy, twirling, twirling, twirling a small piece of paper -- and places the stack in his lap, where it rests for a moment before the young man brushes it lightly with his fingers. The lady next to me looks confused and turns toward her interpreter. I imagine her culture prevents her from grasping the irony of the situation, and I imagine the interpreter breaking through irony to express the literal. You must have another person, over the age of eighteen, hand the documents to the conservatee, the elderly lady states again, and the rest of us nod our heads. That person must then fill out this document, she continues, and we all flip through the next carefully clipped set of papers, and mail it back with this envelope. 

The clinic takes little more than an hour, and we each leave with a manila envelope stuffed with papers. My anxiety about this process has turned, quite dramatically, into resignation and even amusement. To tell you the truth, I'm actually looking forward to asking one of my friends to serve the papers to Conservatee Sophie. I intend to be the Minister of Silly Walks when it's time to drop that set into the mail.

Beyond Disability Porn ( with a correction from Red Sox to Cincinnati Reds)

I was happy to read Bill Peace's blog post today titled Hard to Believe, Sports Illustrated, Teddy Kremer and Feel Good Stories. As a passionate disability advocate, Bill has opened my eyes on many occasions, and  in this post he addresses the trouble the media has -- and the propensity of our culture -- with depicting those with disability in a seeming attempt to highlight or inspire but rather demeans them. We call it disability porn, and I know that we're all guilty of it, at some point or another, even those of us who fight the stereotypes daily.

What's so unusual about the referenced story in Sports Illustrated is that it not only tells the inspiring story of a  Cincinnati Reds bat-boy who also has Down Syndrome, but it actually calls for more progress. In fact, the article by Paul Daugherty is titled Reds Bat boy with Down Syndrome a Great Story, But it Shouldn't End. 

I urge you to read both Bill's post and the Sports Illustrated article. Educate yourself and then pass along what you've learned.

Just a rose

(That's Oliver's wrist, holding it up. Ridiculous, right?)

A Kick in My and My Personal Assistant's Ass***

***the personal assistant is a Fig Newton of my imagination

Rear View

I took this photo earlier today, sitting at a red light in the exit lane of a major American freeway. I was driving back from an appointment to have the stitches removed from my minor skin surgery two weeks ago. I hadn't spoken to a single soul for hours, actually, sunk into self-absorption, the curse -- and blessing -- of the writer. I was listening to Graham Green's novel The End of the Affair, one of my favorite books about love and obsession, its gloom and heaviness and pitched ambivalence a perfect parallel to the sky above. Sometimes it's best to sink into gloom, I thought, just as the man rolled by me in his wheelchair. He held out his hat, his feet shuffled forward, down the line, in my rear view.

A Toe in the Door Kind of Rant

The Grand Inquisitor

So, I've read a bit about the Republican guy who would "be the first in line" to torture the kid who built the bombs and set them off in Boston last week. I read, too, the opinions of those who think the kid should be tried in a military court despite the fact that he's an American citizen and that's against the law. I read that he is charged with using a "weapon of mass destruction" (and can't help but feel the irony of those illusory WMDs in Iraq so many years ago that launched a thousand ships) despite the seeming humble origins of pressure cooker, nails, metal. I have wondered, with others, why the poor souls of West, Texas who disappeared in an apocalyptic explosion and fire, haven't warranted the same amount of outrage and/or horror of those attending the Boston Marathon last week. I flipped through scores of powerful photos on the internet of refugees, maimed children and grieving men and women in the streets of Syria, where scores die every single day. I shrink from the Facebook posts exclaiming over the kick-ass law enforcement of Boston and all the cliches of bravery and fortitude that have followed. I listened carefully to those who are nervous about traveling to big cities with their children. I even argued a bit over on Maggie May's blog with a guy who was carrying a huge stick and swinging it wildly.

I don't know quite what to make of all of this and wish that I could just turn it all off.

Off.

I read this, though, which put my unease, if not to rest, then at least in perspective.

What we witnessed was a tragic — but sadly – too familiar sequence of events. In a nation of over 340 million, we have a few demented or damaged souls with real or imagined grievances that cause them to wish to harm people whom they do not know. We also have good, brave, and competent local and state police forces that are able and willing to solve these crimes. It was true back in 1977 (and long before), and remains true today.

So what in fact did change? We now have a “War on Terror” that permeates every public news event and action. The immediate leap to the familiar “Terrorists In Our Midst” narrative is facilitated and amplified by a bovine mainstream media amped up by endless alerts issued by a Department of Homeland Security and two Presidential Administrations about insane foreigners here, there, and everywhere. In other words, what’s changed is the presence of a fear-mongering narrative of the War on Terror, along with the billions in expenditures that are used to justify it, that reframe a centuries old story about crime.

The rest of the story is here.

I don't know if I agree with the above writer, but it settles my unease a bit. 

Reader, what are you thinking about or turning OFF?

Applying for SSI, Day Four: Hooray for Big Government!

A story told in images with minimal explanation:

We waited, patiently:

And not so patiently:

We looked at the curious art hung on one wall.

Why? I wondered (about the art, not the wall or the wait)

It soon became apparent that our goal was to be called by someone from Door Number Nine:

This is apparently the uniform of the Social Security Worker in Los Angeles:

(the stilettos, not the flip flops)

We at last entered Door Number Nine and accompanied a very nice woman, also in stilettos, to her desk. She asked us a series of questions and typed so fast on her keyboard that it put my own considerable talents to shame. She was thorough, respectful of Sophie and me. She did ask me when her seizures started, and when I told her at three months, she asked why and I said We never found out, and she said We had a traumatic situation to deal with in our family this month and I said What was it? and she said Our 18 month old son had a febrile seizure, and I said, Oh, I'm so sorry and I know how stressful and awful that is, but he will be fine and she nodded and teared up a bit and then kept typing.

This calls for a bit of French, I think:

Quelle chance!

Non?

Or as Carrie might say (and you should buy her book!): There are no coincidences. 

We were out of there in a half an hour with an assurance from Our Lady in Stilettos that all was well. All total, we spent one hour and one half in the United States Social Security Office, an hour that included a thorough security check of our bags and persons, some outstanding people-watching, curious Asian art, a wonderful worker who did her job quickly, sensitively and efficiently, the new experience of helping Sophie to sign an X on several lines, and, of course, the crossing off the list of applying for Supplemental Social Security for Sophelia Bedelia.

I'd end this post with a rousing chorus of God Bless America!!! but I wouldn't want to make anyone have a heart attack.

Spring, Eliot and Nepo

We have much that is spring here in sunny southern California, gray mornings that seem protective of the plants, sleeping, before the brilliance of afternoon sun. The oak-leaf hydrangea reach ever higher in my front yard, each tiny white blossom a cup where hummingbirds hover.

Birds sing, too, and are nearly jubilant even as crows hop belligerent across the street, their caws less frantic than a month earlier.

Green isn't green but chartreuse, and marks the line between spring and summer.

April, though, is the cruelest month, as the poet wrote.

It breeds lilacs out the dead land, Mixing memory and desire.
(T.S. Eliot)

I have felt lower in April than March and certainly February, Winter kept us warm, Covering earth in forgetful snow, feeding A little life with dried tubers.

This morning, the birds sang and the crows hopped and Sophie hummed, but I felt as if I were pulling love out of shadow. I read this:

If you can't see what you're looking for, 
see what's there.

Close your eyes and know that though you may 
not see anything, you are growing, and that something
larger than you is carrying you toward the light.

I am growing. I am being carried toward the light. I lack nothing.

Mark Nepo, The Book of Awakening

Challenge Yourself

Call out your peers for making assumptions based on abilities and disabilities. And most of all, be open to deep and meaningful relationships with people with disabilities. Give yourself the opportunity to have friendships that transcend social norms and do it for yourself and the world, not out of pity or saintliness.Let me say that again - not out of pity, saintliness, charity or community service hours.

via Sea Change Ripples

Read the rest here.  

When I read the above post on a stranger's blog, I was reminded of a friend who told me a story of a boy in her neighborhood whose mother asked whether her son could perhaps come over and play a little basketball with my friend's son who had Down Syndrome. My son needs to do some community service, the woman said. He still needs a few more hours. My friend knew that she was supposed to feel gratitude toward this woman and her son, but she didn't. I don't remember what she said, but it wasn't sure, send your son over who has known my son for all of his life but wouldn't spend time with him unless it earns him some hours which, to tell you the truth, makes me think he's a shallow boy with an even more superficial mother. She felt belittled and small and probably overcome by that weariness that sets in when you are reminded, again, of the long road ahead.

When I read the above post on that stranger's blog who is far more intimate with me now than even some of my closest friends for having articulated these shared thoughts and feelings, I wondered if I even had the stamina to do the calling out and to keep it up. I wondered if I'd live the rest of my days -- and Sophie's -- in the steady loneliness that is the result of constantly trying to persuade the world of her worth should it just take the opportunity to see.

The morning after

The world is changed on the morning after dancing until the late hours the night before. One of my closest friends celebrated her 50th birthday last night by throwing a karaoke party with a 1970s theme. I put on some sparkly blue eye-shadow and wide-legged jeans, carried a pink Goody comb that I have miraculously saved from my childhood, and danced, literally, the night away. There was onion dip and potato chips, green bean and tuna casserole. There were meat-loaf sandwiches and crab dip with Triscuits. There were Leaping Lizard drinks, and I had several. At some point, I broke out clog dancing and later, when we recounted it, I nearly wet my pants laughing. So, it's a beautiful morning and my heart feels so much lighter this morning that I can only attribute it to the dancing and friendship and laughter from last night. I highly recommend a karaoke machine and some music from the glory days to right the world.

Gold in black and white

I'm carrying weight around these days like a pocketbook, slung over my shoulder, as old as my Italian grandmother. I'm a fish in a broad bowl in a white and black coffee shop, gold stands out but does nothing for the circles I make, endless and round and round. I am perfect from the outside, my gills move in and out, my stroke is effortless, the world outside curved as it should be, the pastries in their case, the man with the bald head and the tattoo sleeve, the girl with the porcelain skin, the milk and sugar and straws and spoons lined up straight in front of burning candles, an altar to life, as we know it. I'm down, I said, I can't shake it, and I took another swim about. You don't seem that way, he said, the last swallow of orange tea, ice crunching. But I am, I said, it's here, in this pocketbook. Don't you see it?

Two Pictures and Two Poems

To converse with the greats

To converse with the greats
by trying their blindfolds on;
to correspond with great books
by rewriting them;
to edit holy edicts,
and at the midnight hour
to talk with the clock by tapping on a wall
is the solitary confinement of the universe.

Vera Pavlova

Catch

Big Boy came
Carrying a mermaid
On his shoulders
And the mermaid
Had her tail
Curved
Beneath his arm.

Being a fisher boy,
He'd found a fish
To carry --
Half fish,
Half girl
To marry

Langston Hughes

On Elvis Impersonators Who Mail Poison to the POTUS

If you can stand to read a million f-bombs in a hilarious and sobering blog post, check out Jezebel. If you can't, just leave a comment about my blown-out hair or those lines on my neck or that Buddha necklace I'm wearing or the snarky reply I gave my latest anonymous commenter.

Happy Friday!

Planting Rue

Ah, are you digging on my grave,

My loved one -- planting rue?

Thomas Hardy

I think my week of posting poetry in lieu of tongue lashings is finally coming to an end. I am reminded of my favorite joke:

What goes HA HA PLOP?
(answer below)

So, should I continue to post poetry that sustains me when I'm darkest or should I get out the scythe and sharpen my tongue?

Should I laugh my head off at the creeps in the Senate and the constituents they represent who wouldn't vote for the barest minimum in gun control laws, or should I sharpen my tongue and cry out against those who believe they have the right to protect their "liberty" and themselves from -- wait, exactly what? -- with a big ass gun, a collection of guns that they picked up at the local gun show in their godforsaken prairie town. I don't know about you, but I live in the second biggest city in the country, and I'm not particularly afraid. I don't foresee a need to protect my children with a big-ass gun from either a criminal or the government.

Should I laugh my head off at the fact that it'd be easier for me to go buy a big-ass gun and ammunition to protect me and mine from the government than it would be for me to purchase an affordable medication for my daughter with my private health insurance policy?

I just typed a comment on another blog about my own head this week, so heavy with the vile stuff that's happened, that I imagine it falling soundly off and not even bouncing.

Reader, is your head heavy and your tongue sharp?



































***A man laughing his head off.

A Spine-tingling life

A beautiful, shiny Rolls-Royce pulled up beside me in the CVS drug store parking lot early this morning, where I had gone to pick up some boxes of band-aids to cover the stitches in my back from last week's minor surgery. Seeing Rolls-Royces in Los Angeles is not such an anomaly, but it's usually in Beverly Hills that they roam and certainly not at the local drug store in my neighborhood. When I glanced over, the driver glanced at me and then continued shaving with what looked like an electric razor. I wanted to take his photo, but I didn't have the nerve until he got out of the car and walked inside. He didn't appear to be a chauffeur, dressed in a shabby suit with a yarmulke on his head, and I prefer to think that he was running errands, just like me, living a spine-tingling life.

Success Story

My clothes are perfectly contoured
to my body. My shoes & socks
fit just right. My cat is a delightful
intelligent animal. My apartment
is great. The right location,
cheap rent. I eat the best food.
My friends love me. I adore them.
My lover is terrific & beautiful.
The sun is shining. There are trees
even in the slums in Washington.
I have tons of money & a gorgeous 
air conditioner. Great art hangs
on my wall. I live a spine-tingling life
of delirious sex & intense happiness.
                           
Terence Winch 

This Perfect Morning

Blue sky and trees, La Brea Blvd.

Just last night I joked with a friend that if it weren't for the perfect weather, I'm not sure what I'd do with -- well -- my life, to tell you the truth. Hyperbole aside (and that wouldn't include the weather), here's a perfect poem that appeared in the Borzoi Reader this perfect morning.

Sonnet for Minimalists

From a new peony,
my last anthem,
a squirrel in glee
broke the budded stem.
I thought, Where is joy
without fresh bloom,
that old hearts' ploy
to mask the tomb?

Then a volunteer
stalk sprung from sour
bird-drop this year
burst in frantic flower.

The world's perverse,
but it could be worse.

Mona Van Duyn

Sophie, Seizures and Texts

So, I was going to sit here and update you on my continued wheelings and dealings with the acquisition of Sophie's anti-epileptic drug, Onfi. It was going to be titled Drug Mule, Part 347, but to tell you the truth, I don't have it in me. At least not today.

What I do have in me is a screen shot of a typical text that I might receive on any given day from either the aide at Sophie's school or her teacher. Don't get me wrong -- I love both of them, and they both do a kick-ass job of teaching and taking care of their students, including my daughter. What I wanted to convey is probably more my reaction to these texts which is a sort of nonchalance or resignation, and as my finger slides over the words or presses here and here to get a screen shot, I wonder if underneath that seeming lackadaisical manner is a suppressed hysteria.

And Sophie? This is what she looks like, despite the multiple seizures and near-constant agitated head-banging. Perhaps a bit tired, but pretty great despite it all.

And me? I believe you've seen a photo or two of me, but I took this one just a moment ago, and it perfectly captures my mood:

Reader, what did your day bring you?

Swimming with Seahorses

I don't have a moment to spare, but I did want to check in and say that I feel as if I'm underwater not in a bad way but a good way, like I'm swimming with my favorite animal, the seahorse. I had enough time to go through the archives and find this magical photo that Henry took years and years ago.

We'll tawk later.

Living with the Santa Ana

It's another spring day of glorious, sparkly light but the Santa Ana winds make me uneasy, nervous. I can hear them stirring the palms right outside my bedroom. There's a space between the rustle and the fall, a crack, a bird stops singing, a thump. I feel the winds inside, brushing against my stomach. Joan Didion said of the Santa Anas that the wind shows us how close to the edge we are, and I suppose there's some comfort in knowing that this element has a history to it and that little of it is under my control. I ceded control a long time ago -- somewhere around year six, I think, of Sophie's troubles -- and can't articulate exactly how I am, in fact, comforted rather than terrorized by that surrender. I am made of bone and tissue, sinew and fat and muscle but mainly water, the fluidity of chaos and the absurd. Today, I think that these winds that disrupt the palms are the outer version of the fluid inside. Like the palms, we are forced to let go, shed bits of ourselves, usually the dry and dead parts, but mostly we bend.

Santa Monica, March 2013

That vague paralysis when there's too much news.

Wandering around, the ineffectual

Two good quotes:

The cure for anything is salt water -- tears, sweat or the sea.

Isak Dinesen

Violence is the last refuge of the incompetent.

Issac Asimov

A little Leonard Cohen

Atlanta Aquarium, 2006

These Heroics

If I had a shining head
and people turned to stare at me
in the streetcars;
and I could stretch my body
through the bright water
and keep abreast of fish and water snakes;
if I could ruin my feathers
in flight before the sun;
do you think that I would remain in this room,
reciting poems to you,
and making outrageous dreams
with the smallest movements of your mouth?

Leonard Cohen

There are times to humor the ugly.

Why complain about the air when there's nothing else to breathe?

Peter O'Toole in The Lion in Winter

I walked Sophie up and down, up and down the block today, waiting for Henry and Oliver to get haircuts. Sophie is out of sorts these days. Something bothers her, but we don't know what. She tosses her head, bangs it on any nearby hard object. She throws herself toward those who are supporting her as she walks. She hums and sits down in the middle of the grass, the sidewalk, her room. She is at once restless and unsteady, not interested and purposeful. So, as we're walking up and down, I'm in no mood. No mood at all, particularly for the staring. I imagine lasers coming out of my eyes and boring down and into those who stare and twist their heads backward. I feel no kindness or understanding and think that perhaps I'm inviting hostility with my own. So be it. There are times to humor the ugly. Outside of the Rite-Aid an old, exceedingly ugly homeless man begs for money. He is always there. I walk up and down and past him numerous times, and on my final lap -- the boys have appeared, shorn -- he looks straight into my eyes and says, God bless us all. I look right back at him and nod my head. I say Yes. I think, fleetingly, that this pathetic, worn man has recognized me as him and that makes me uncomfortable. As I pull Sophie along, I realize that he is, literally, the only person who, in recognizing Sophie's difference, both made eye contact and spoke to me. 

The Purple Game to End Epilepsy

It was an amazing day, yesterday.

The Occidental College Girls' Lacrosse team out did themselves, supporting their captain, Lauren Wemple, who has epilepsy. Here they are pre-game, getting pumped and warmed up.

Here we are, pre-game, getting pumped and warmed up:

Here is Sophie, walking the field:

Here is Lauren and her friend Hilary -- before the game:

The team:

A bit of the game:

Here I am, making a short speech in the press box at half-time.**

Here's the team, graciously walking across the field, despite a very close game, lost by one point.

I'm so grateful that our family had the opportunity to do this with Lauren, to meet her and her beautiful team-mates, friends and family. I'm grateful, too, for my friends Susan and Lisa and their boys who came out to support us.  It was a memorable day for all of us.


**Here's my speech:

Hi, there! I am so honored to be standing before you this beautiful afternoon and to tell you a bit of our story. My daughter Sophie was born eighteen years ago in New York City, a typical baby girl, and my husband and I had expectations that she would continue to be a typical – perhaps extraordinary individual – whom we would love with all of our hearts. When Sophie was nearly three months old, she developed a rare form of epilepsy called infantile spasms that appeared, seemingly, out of the blue, and despite more than twenty-five medications, special diets and countless alternative treatments, her seizures continued unabated, daily, severely impacting her development and thrusting us, her family into a very different world than the one we had expected. We would never find the cause of her seizures, despite the best minds in neurology studying her.

Lauren has asked me to share her story as well. She describes her health as an ever-engaging, ever-developing, and ever-challenging facet of her life. Epilepsy has manifested itself in several different types of seizures for Lauren since she was 14. As time has gone on, she has faced these different forms of the disease head on, wanting nothing more than to subdue her symptoms and continue life as normal. The reality is, just as her body gets used to different medications and different doses, the symptoms of her epilepsy change. it has taken emotional struggle and years of frustration to finally come to terms that there probably will never be a complete solution. But epilepsy does not define who she is. It does not define her identity as an educated young woman, an NCAA athlete, a captain, a musician, a daughter, a sister, and a friend. She says she has accepted this difference and coped by putting her whole heart and body into living her life.

1 in 26 people will be diagnosed with epilepsy in their lifetime and nearly 3 million people in the USA have been diagnosed with epilepsy. An estimated 50,000 deaths occur each year in the USA from prolonged seizures, Sudden Unexplained Death in Epilepsy and other seizure-related causes. That is more than the number of deaths due to breast cancer each year. It is indeed sobering, and we are grateful to Lauren and the Occidental Lacrosse Team for bringing so much attention to our fight to End Epilepsy.  Despite the struggles of my daughter and the impact of her seizures on our family, my husband, our sons Henry and Oliver, we have much for which to hope. Recently, President Obama, probably your most famous graduate (after Lauren, of course!) mentioned epilepsy as one of the diseases that will be getting attention in the new Brain Initiative. We have all of you who know a little bit more today about this disease and its broad impact on our community.  We hope that you will go out and share it with everyone you know.

You know, despite the incredible hardships we’ve experienced as a family witnessing the devastating impact of epilepsy on Sophie, our expectation that we would have an extraordinary daughter whom we would love with all of our hearts has been fulfilled. Sophie is extraordinary. She inspires us every single day. She is brave and beautiful and graceful and worthy, and we are honored to share her story with you.  We know that Lauren is brave and beautiful and graceful and worthy, too,  (and a dang good lacrosse player!) and are proud to stand with her and her team and ask you to help us to end epilepsy.

Thank you for having us here.  Thank you.

Saturday Night West Coast Re-post

From the archives:

Wednesday, August 31, 2011

Yosemite - Part 2

Holiness comes wrapped in the ordinary. There are burning bushes all around you. Every tree is full of angels. Hidden beauty is waiting in every crumb.

Macrina Wiederkehr, O.S.B.

via Word for the Day