Portals

I took 24 hours and left with Carl on Sunday morning for Ventura and a boat that took us to Santa Rosa Island, one of the remote, uninhabited Channel Islands. We spent the morning looking at whales and dolphins and the wide-open Pacific, the water choppy and sky overhead gray and moody. It took over two hours to get to the island, but once we were there, the skies opened up blue and we wandered around the fields and explored the deserted buildings of the ranch that had once displaced the native Americans who made the island their home. It was very beautiful.

No one lives on the island anymore, but some people brave its isolation and camp, and there are volunteers who stay to lead tours. Carl and I avoided the few people who had gotten off the boat and made our way alone down to a beach that might as well have been in some tropical paradise, such was its wildness and solitude.

I lay in the sand and read and dozed and we ate a bit of the food that we'd brought -- turkey, crackers, cheese, grapes and plums.

I tried to let everything go, everything.

to be grateful for love and companionship
for whales
for the ocean
for the souls that were banished from this place
for the sand and the breeze that bends
the poppies
for the wide world that still holds us up

the deep world

"Grief as Praise" on Who Lives Like This?!

Heather Barnes Jackson, Me and Allison Benavides

I hope ya'll will listen to today's podcast. We interview Heather Barnes Jackson, a mother, advocate and the CEO of Realm of Caring. She is one of the most beautiful women I've ever met -- brilliant, funny, warm and earthy. She's quite literally helped tens of thousands of children and young people -- even saved their lives.

I've been thinking so much of what she describes as a "sick obsession." It's suffering and grief, but her insight is not just provocative but deeply healing, at least to me. As I listen to the podcast a couple of weeks after we originally recorded it, I'm struck, again, by the astounding people I've met over the last twenty-four years. Grief as praise, indeed.

Listen to the podcast here or anywhere you listen to podcasts. You can also read the accompanying blog post on our website: www.wholiveslikethispodcast.com

Tuesday Night Grumble and Gratitude

I was going to just grumble grumble grumble. Grumble about that silly movie Green Room winning the Oscar for Best Picture (see my very early dis of it here), grumble about the Bird Photographer leaving town for a week, grumble about all the dumb shit and people we have to put up with who are supposed to be running the country, grumble about always feeling like I need to lose some pounds but knowing that I'll probably never lose some pounds, grumble about doing my taxes and figuring out how to pay for not one but two children in college, grumble about still not having a good doctor to take Sophie to for general issues, grumble about the state of my house, how it's overflowing with books unread and the stack of papers that make up my manuscript that will, perhaps never get written. Grumble, grumble, grumble. The Catholic Church, Paul Manafort, The Methodist Church, sex trafficking, the mediocrity of culture, obscenely rich people -- the grumbles are rolling.

You wanted to hear that, right?

Here's the thing. Despite that silly movie winning, there were a host of truly beautiful, mind-blowing films that should have won it, and I'm grateful for having seen those movies and beyond grateful that there are artists in the world with vision and grace and bravery doing their work. Despite the Bird Photographer leaving me to go shoot birds (with a camera not a gun) in another state, I'm grateful to be partnered with such an extraordinarily talented and sweet man who is doing what he loves best, observing beauty, making beauty. Despite the state of Terrible America, I am grateful for investigative reporters that continue doing their work informing us, digging deep, and I'm grateful to have a brain that is willing to dig deep and wrap itself round difficult things and parse them out. Despite needing and wanting to lose weight, to look like I did twenty-five years ago, I'm grateful to have this strong body that on its best days can lift a 75 pound woman, can walk up a hill to an overlook and gaze out on a shining city with snow-capped mountains and blue skies behind and above it. This body can love, and I'm grateful for that, too. Despite the horror of going through my medical expenses and all the other paperwork I need to do, including just facing the numbers, the dismal numbers, I'm grateful that I finally have a great job that I love. Despite the existential threat to my sanity that thinking about BOTH sons off and away from me in the fall, I am so grateful that they are such fantastic beings with their whole lives ahead of them. Plus, they're damn cute. Despite the tedium of finding a doctor for Sophie and the grappling with CTSS (chronic traumatic stress syndrome), I am grateful that she is doing well on her current regimen of CBD and IVIG, and that she has such a terrific aide at her adult day program. In fact, I think you need to see a recent photo of  the girl:

 Here she is contemplating Art.

And here she is contemplating the Bird Photographer:

Despite the cluttered house, the books to be read and the books to write, I am grateful to be surrounded by all of it, all of it, to have so much beauty in my life, so much love, so much for which to be grateful.

The end.

Infused with Gratitude and Antibodies

I am so grateful in this moment to hear the steady tick of the intravenous immunoglobulin being infused into Sophie's body. I'm grateful for the gentle ministrations of the home health nurse who has already spilled her life story to me -- a life story very different than mine but I'm open to -- well -- everything. She will be here every day for the next four days and then monthly for the next six months.

I am so grateful for all the support we've gotten in the emails, texts and comments here on the blog and on Facebook over the last couple of weeks in particular. I'm particularly grateful for Christy H, a friend here in Los Angeles whom I never see but who also has a child with special healthcare needs. I got a delivery on Friday from a courier service, opened the large box and found a beautiful note from her and her husband and a bottle of very fancy champagne and a bottle of beautiful rose. This just brought me to tears, to tell you the truth. Here it is next to the hard-won medication that is being infused into Sophie's veins with the hope and expectation that it will help her to recover from the terrible syndrome that has caused Sophie so much suffering. How many folks do you know who have such riches side-by-side in their fridges?

I hope your Sunday has been a good one. May the week ahead be filled with champagne and necessary blood products.

Gratitude Schmatitude

I'm not going to lie. I've been feeling about as low in general as I've ever felt, and rather than going through it all here (as I've done ad nauseum for many, many years), I'll just tell you that yesterday was a doozy in nearly all respects, that I spent a good many hours plumbing the dark side and didn't have any expectations that I'd be doing anything other than spelunking for the rest of my life. Have ya'll ever spelunked? I did many moons ago, when I was a painfully awkward preteen. I lived in Georgia, and as I recall it now, the weather was grotesque, hot and humid, but despite this, my mother had signed me up for a number of Red Cross activities which included canoeing, lifesaving and spelunking. As my regular readers know, I was a terrible athlete and preferred reading to just about any other activity, so slithering through a red clay tunnel was not something that I even remotely enjoyed. I do remember, though, that it was surprisingly cool in those tunnels and that I was actually pretty good at spelunking, namely because I was skinny. Yes, I was actually skinny back then and good in the dark, probably confident that light would come.

But I digress.

I know there are plenty of ya'll out there who espouse the whole gratitude thing, and while I've dipped into it now and then as a thing, I'm more prone to feeling gratitude for real, as opposed to a practice, and that's because I actually have so much for which to be grateful. In other words, it's not hard for me to feel grateful, even as I feel like shit or shit's raining down. Also, I was once a Catholic. I imagine only lapsed or former Catholics get the full gist of that statement.

The groove that my forehead has worn in the tile of my shower got a little action yesterday, as did the plumbing. Lots of tears. I am certain, during these times, that bitterness, resentment and overwhelming sorrow will take me over. You figure out which of those sentences are hyperbolic.

Then I opened my mail. I ordered the above pictured book a few weeks ago. It was published by the folks at gratefulness.org, or A Network for Grateful Living, an online site that I've had the pleasure of reading and then being a contributor off and on for many years. I always felt like a bit of an imposter when my writing appeared on their site, mainly because of the above -- the bitterness and resentment, the gratitude schmatitude thing and my own skill at spelunking. I ordered the book because what they do at gratefulness.org is a beautiful thing, and I want to support them. So, I'm flipping through the book, reading beautifully illustrated quotes by the Buddha and Barack Obama, by Brene Brown and Maya Angelou, Desmond Tutu and Mother Theresa, when I come upon -- well -- me.

I swear I'm not telling you this as an act of self-promotion or even as a humble brag. I'm telling you this because I was feeling as low as I've ever felt as I flipped through this small book, and I had no idea that my words would be excerpted in it. My initial response was to burst out laughing at all the world's absurdity, particularly my own.*

There are no accidents, my friend Carrie Link has said.

Yes, I felt buoyed by the support and restored by the acknowledgement. I felt released by laughter. Mostly, though, it occurred to me that even the great sages with whom I was absurdly placed must have periods where they, too, are stuck in dark tunnels, crushed by the earth, that all of us share this humanity and that we are humbled by one another and, of course, completely grateful for one another. For real, not as a thing.


You can order Everyday Gratitude here. Please support them because they're doing beautiful work in this world.













* The index of contributors places me after Maya Angelou and before Joan Baez. I know it's alphabetical, but ya'll!

Shedding Tears

I've decided to be fully present during each seizure and shed tears, at least afterward. The word shed.  Dutch and Germanic, Old English root: to separate out, to scatter, to divide. I remember watching a scene in a movie -- maybe Zorba the Greek -- where a bunch of women are wailing in the streets about something or another. I can't find the scene, though, so I might have made it up or perhaps reached into my cellular wellspring where the Middle Eastern and southern Italian histrionics lie embedded. The word histrionic. The dictionary states that its origin is the 17th century, and I imagine some Germanic guy or Anglo-Saxon with the whitest of skin took the Latin root for drama and acting, twisted it into something unfavorable, applied it to women, in particular.

I have a friend whose adult son is schizophrenic. She's done things like cleaned his shit from the walls of his apartment. She and I recently sat in a car outside her house and discussed how we imagined ourselves screaming in the streets with other mothers, other women. Tearing at our hair and wailing, rending our garments.

How fitting to shed --  to empty oneself that way.

Watching a person twist and jerk and grimace over and over, in minutes and then years, helpless to do anything but watch and abide in the moment -- surely this calls for tears afterward as much as efficiency or quiet?

Are there enough tears?

There's nothing to be thankful for with seizures.

I don't believe in prayer and would as soon as stand on a pew and wail then beg.

There's gratitude, though, in tears.

I bought some daffodils the other day. The buds were tight, the stalks like paper. I stuck them in water and watched them unfold into yellow.

The Full Catastrophe

#gratitude

Are you thinking jesus! When's this woman going to express her gratitude for the deep blue sea and the great blue whales? Here it is, my gratitude for the deep blue sea, for the coast of California and the planet's largest mammals that swim in the waters.

I saw five blue whales a week or so ago, not one or two or even three but five. Their bodies are sleek and shone in the sun. Vast.

Here it is. My gratitude for dolphins, for the thousands of them raced us, my efforts to not anthropomorphize so difficult because surely they smile and play and love?

Here it is. My gratitude for the island fox

for a dusty hot day

for a rocky beach where I lay with a book on a blanket, a stone under my head and in the small of my back

for a painted cave that smelled of damp and green. Lichen, the word

For white flowers that grew out of rock

for red crabs busy in clear water

for pelicans overhead

for this man for us

Three Comments, Plus

Sometimes I can't get out from under sorrow. An oppressive blanket that I just can't kick off. Otherwise, it lies under me, a mattress on which my strong straight back rests.

Silly metaphors.


I.

Anger first, then sorrow, my friend Mary texted me this morning.



II.

No rocket science, especially about the med community overall. Pharm feeds off and feeds it, now it wants the lion's share of a thing that sadly everyone else worked so hard to prove was the right thing all along. They will of course fuck it up, wrote my friend Ken in response to my most recent posts.



III.

The unwillingness to have a conversation is shocking to me. This is how our previous two docs functioned. They didn't want to hear anything from us and didn't entertain the thought that how the body functions or doesn't on the most basic biochemical levels might contribute to seizures. Or even tell us that they didn't believe that was an issue.

So my question to myself is why continue seeing neurologists at all? It seems to be the wrong tool for the job at this point, like going to an auto mechanic to treat cancer. But we're told that we have to because it's irresponsible not to have one. But is it? We've learned on our own how to wean as safely as possible. We've learned from experience that extra [drug] and not rescue benzos best stop her clusters. But I still worry, always worry, that as EVERYONE says, we can't go it alone because they're DOCTORS and they know things and we're not. But I'm not sure doctor means what people thinks it means at all. It sure as hell doesn't mean critical thinking or curious mind, wrote my friend Chris from across the country in an email I got this morning.



The gentle advice of my friend Moye, my sweet sister Jennifer's concern, the Bird Photographer's embrace, the raucous laughter of my friend Debra, and the arrival of Saint Mirtha conspire against the immediacy of sorrow. They, and the three comments that fell into my lap this morning, peeled the blanket back.

Thank them.

I am always trying to string moments together to make a strand that will last, something to hang around my neck, but I'm thinking that I must acknowledge moments as only moments. There's no end to the stringing, otherwise. So many sounds. Sorrow. Samsara. Surrender.

Seizures and the Full Moon

I realized this morning that I hadn't posted a follow-up to Friday's dire post about Sophie's seizure clusterf*@k. I expressed my gratitude on Facebook toward all those people who sent us such loving and encouraging words, but I neglected to do so here, so thank you, thank you, thank you for buoying me. Sophie hasn't had a day that bad in a couple of years, and I have no idea what prompted it. I have several friends in the seizure world whose kids had particularly difficult days last week and over the weekend, too. We all did the dance that I alluded to in my last post, and we all, in our weak attempts at control, tried to figure out why. 

Was it the full moon? Possibly, as many of us are convinced that full moons exacerbate seizures despite there being no "scientific evidence or correlation." The fact that our kids seize regularly and more violently during full moons is generally reduced to anecdote by the great and almighty Science Community. We of the tiny little mother minds™ are apparently just howling at the moon in between wiping our children's brows, preventing their limbs from banging into furniture as they seize, agonizing over whether or not to administer rectal Valium (because the after-effects are so awful), syringing liquids in them because they've forgotten how to swallow between the seizures and the drugs and weeping on the sides of beds at the goddamn relentless of it all.

So, Sophie is home from school today, recovering. I hope. She is refusing liquids -- or not exactly refusing but rather having difficulty taking them. She reaches for her sippee cup and brings it to her mouth but doesn't seem to remember how to suck out of it or how to swallow other than in gulps. I am, basically, force hydrating her, dropping 1 ml syringes of liquid into her mouth and rubbing her cheeks and throat. Last night at dinner,  I compared myself to the British police force-feeding the Irish Catholics and suffragettes. The boys were horrified. Every now and then, the instinct to purse her lips seems to come back, but then she flings the cup away. I've resorted to looking in her eyes and threatening the hospital and IV liquids if she doesn't get it together. This is, of course, in my mind. I don't actually say it. People love to say that extreme parenting teaches you to not sweat the small stuff. It's been my experience that the small stuff is often what breaks you, and this weird liquid strike has the potential to break me every single moment. OK. I broke and wept this morning after getting 4 ounces into Sophie and wondering for one impossibly long moment whether she had permanently forgotten how to drink and swallow. It's happened before, though, so I'm hoping that she'll regain the skill as the drugs leave her system and things calm down with the waning of the moon.

My friend S who is no stranger to extreme parenting (and far more extreme than I despite her son being less than a third of Sophie's age) gets the grand prize of cheering me up the most.  When I shared that my tiny little mother mind™, in its dogged attempts to control the situation, believes that the full moon might be the cause, she revealed that her son had had a brief and unusual seizure with the full moon but had never heard of that theory.  Here's a snippet of our texts:

But her best comment -- the one that released me from my angst and made me laugh long and hard was this:

We both agreed that the whole thing is particularly frustrating because we -- well -- love the moon.





I'm a little giddy from the loss of sleep and Force-Feeding of Liquids. Can you tell? Saint Mirtha is here, though, to relieve me, so I'm going out with Oliver. Thank you again for all your love and support. I could never, ever do what I'm doing without it.

A Moveable Feast Chez Moi

Last night nine beautiful people came over to my house to discuss Hemingway's A Moveable Feast, drink an aperitif and good wine and eat a meal that I prepared.

If ya'll haven't read A Moveable Feast, you should -- particularly if you're a writer or a lover of wine or food or Paris. I practically ate the book itself, and I've never been a Hemingway-lovah.

Here's my menu:

Chambery Cassis

(vermouth, creme de cassis and soda water)

Pissaladiere

Puff Pastry with Caramelized Onions, Anchovies and Black Olives

Camembert with Crackers

Soupe au Pistou

(Hearty vegetable soup with pesto)

Coq au Vin

Endive Salad with Lemon Vinaigrette

French Apple Tart with Creme Fraiche

Sorry about the lack of appropriate French accents on my menu -- I can't figure out how to do those things on my Mac.

Here are some pictures:

I have to say that my French Apple Tart was the piece de resistance (without accents that looks really, really bad). I don't bake as much as I used to, and while I trained under some amazing pastry chefs in New York City, it's been some time. I've forgotten how much I love to make pastry dough and assemble something beautiful. Like other good things happening in my life,  classic pastry is at my fingertips. I apparently haven't lost my touch and I'm grateful for that. A moveable feast --

Oh la la.