The World We Live In

The World I Live In

I have refused to live
locked in the orderly house of
      reasons and proofs.
The world I live in and believe in
is wider than that. And anyway,
       what's wrong with Maybe?


You wouldn't believe what once or
twice I have seen. I'll just
         tell you this:
only if there are angels in your head will you
         ever, possibly, see one.

Mary Oliver, from Devotions, The Selected Poems of Mary Oliver







What's happening here?

Sophie's getting a 48-hour in-home video EEG monitoring. We hope that the IVIG infusions she's been receiving monthly are working to resolve this hideous syndrome. Sophie is strong. I would say that I am, but sometimes I'm not. The tech who hooked Sophie up was the nicest guy. We listened to jazz and talked books. Saint Mirtha is here, making soup. The IVIG nurse was here this morning and had to stick Sophie four times because she's dehydrated. She ordered hydration and that was delivered. I am so grateful for Sophie's life and our strength. I'm grateful for health insurance that allows this in-home treatment. I'm grateful for those legislators that continue to fight the piece of shit that runs our country and threatens to take away life-saving provisions of the ACA that allow Sophie to get healthcare and us to avoid bankruptcy and feel some measure of relief. I know it's not perfect, but it's a grand step in the right direction. Those who think otherwise are welcome to live the life of a person with epilepsy and then the life of a caregiver. I'll train you in both with mastery (meaning you'll forget about supporting that piece of shit if you still do) estimated to take about one month. Guaranteed. If you're not willing, shut up and listen to us. We know how to fight and what to fight for because we have to, all the time.

#healthcareforall
#littlelobbyists
#epilepyawareness
#seizuressuck
#caregiverlife
#wholiveslikethis

Re-entry from Mexico

I swam with whale sharks.

Carl and I drove from Todos Santos to La Paz where we took a boat with five other people into this beautiful lagoon. Our guide jumped in the water and signaled for us, so that's what we did. we jumped in the water and swam alongside whale sharks. It was an amazing experience -- these enormous creatures of the sea are not aggressive, and we swam alongside them (no touching) and just - well -- communed. I can't explain how it felt other than thrilling. Free. A little later, dolphins gathered around our boat, so we jumped in and swam with them, too!

It was sort of a religious experience overall, even for the non-religious.

On the way back to the harbor, a young humpback whale joined the dolphins and literally frolicked in the water right in front of us. He didn't completely breach, but he did slap the water and roll around and around. We did not join him in the water but rather watched in delight. Carl took some amazing photos, but you'll have to follow him on Instagram to check those out as he puts them up. His instagram is @mo_better_birds and @cbjphoto.com

The night before we headed back to southern California, Carl and I walked down the beach (never a soul on it but us!) from where we were staying to see whether the turtle eggs had hatched and would be released. Because we are just about the luckiest couple on the planet, they were, so we got to join in the most magical sort of ceremony. The Olive Ridley turtles (Golfina in Spanish) were protected under this tent on a remote stretch of sand about a half mile or so from where we were staying. The tent served as a sort of incubator and protection from predators, after the females lay their eggs and went back to the ocean. When the turtle eggs hatch, the volunteers release the little guys into the ocean. About thirty people gathered to watch about twelve of the tiniest little creatures you've ever seen make a break for the Pacific, a slow crawl through the sand and into the water. I have experienced this once before in South Carolina when many more turtles made their way to the ocean from nests along the dunes, and that was fantastic, but there was something magical and profound about seeing them walk into the pounding surf of Mexico. A turtle would reach the water and disappear as the tide pulled him out, but more often the huge waves would crash into the beach and fling the turtle back. She'd right herself and start the journey again. We stood in a line and watched them in the orange light until they were all gone. No one spoke. We all knew that once they made it to the ocean, their chances of survival are slim. The whole thing is both terrible and awe-inspiring.

Now we're back in southern California, and I'm struggling with re-entry. I'm not looking for sympathy, though, as I know how fortunate I am to have had this vacation. My dear friend, the angel Heather McHugh, made it happen. I feel rested and restored and hope to hold on to that feeling, but to be honest, I'm overwhelmed also by the ongoingness of my life, those things that are constant struggles. That fatigue isn't ever lessened. I am infused with the soft air and bright colors of Mexico, the delicious food and sweet people, the simplicity of all of it. I long to make my own life simpler, to hope for peace and wellness for Sophie, especially, but also to weather the transition into my sons' adulthood. I am deeply grateful for the love of a beautiful man.

On re-entry, though, I feel more like those turtles, plodding by instinct toward the implacable sea and ferocious waves with only the most infinitesimal chance to make it at all.

More Mexico

Tonight the full moon rose over the top of a distant mountain as the sun sank into the ocean and made the sky orange. It was outrageous. As Carl remarked, never is it more evident that we're just spinning round and round as when the moon rises so quickly into the sky. Of course my photos do not in any way do it justice.

That jeep/van thing had four children and two parents inside. It was like a cross between Mad Max, Noah's Ark and Howl's Moving Castle. I had a moment where I envied them their seeming nomadic life, but then I came to my senses.

That's where we've stayed for most of the week -- a beautiful spare and perfectly appointed Air BnB that my friend, The Poet, rented.

Tonight we're staying in town in another beautiful spare and perfectly appointed place.

The picture at the top of this post was taken in a tiny chapel that overlooks a beach where fisherman take off every day and return with their catch. It was a SCENE.

I left the men to their bloody fish and went inside the chapel to light a candle for Sophie.

It was decorated with a beautiful Virgin of Guadeloupe as well as twisted tin foil in an arch and plastic flowers. A rather large Jesus hung (literally) across from a sweet window adorned with painted flowers.

Here it is from the beach:

I'll leave you with a few sweet photos and the intention to regale you with the story of our "whaling" expedition in another post.

Mexico

Two mornings now the cactus wren has woken me, but I'm not complaining because it's Mexican. I'm in Mexico. It's hard to believe that the creature making such a ruckus is a bird, and I haven't actually seen it but imagine it to be chunky and grossly sociable. There's a hardscrabble beauty to everything around here in Baja. Yesterday, I took a walk alone toward the ocean, my footsteps the only sound on the sandy path, and the crash of surf only anticipated. An enormous ridge of sand rises at the end of the path, and you have to wind around a long narrow tide pool, edged with grasses and cacti before you climb up and over the ridge to the deserted beach below, the roar (waves crashing) meeting you. I hadn't yet gotten there, gotten to the point where the sound meets you, when I saw in the distance a pack of dogs, maybe five, come up over the far ridge on the other side of the pool. At first I fancied coyotes, then contemplated wolves and settled on dogs, their ears dark v's, spaces between them and wondered where they were going and whether they were wild and what would I do (dumb, non-dog loving American) if attacked and would anyone hear me if the roar of the Pacific was not yet discernible from bird calls much less screams. The dogs were so in the distance, but I could have sworn that they saw me, that they scattered over the dune, scattered toward me, so I stopped and turned around and walked back, quickly, trying not to look back over my shoulder. Over my head, high up in the sky and then past my line of vision flew a long streak of a bird, black-edged and elegant and alone.

A great frigate, the Bird Photographer told me later.

Frigatebirds can stay up in the air for two months without ever touching the ground.

I'm not sure what I want to say about this, how my mind conjures both threat and wonder but it does and it does again no matter the place.


RIP W.S. Merwin

The Solstice

They say the sun will come back
at midnight
after all
my one love

but we know how the minutes
fly out into
the dark trees
and vanish

like the great 'ohias and the honey creepers
and we know how the weeks
walk into the
shadows at midday

at the thought of the months I reach for your
hand
it is not something
one is supposed
to say

we watch the red birds in the morning
we hope for the quiet
daytime together
the year turns into air

but we are together in the whole night
with the sun still going away
and the year
coming back

photo by Carl Jackson

@cbjfoto 

All My Chicks Are Home

Surround me, confound me
with your boundless love --

24 Years Around the Sun

Happy 24th Birthday, Sophie! Happy International Women's Day!

an excerpt from my memoir-in-progress, But Mostly We Bend

How do I write about this day? Fifteen years of staring into the dark pools of her eyes, wondering what she is thinking or what she sees or whether she knows anything or everything. Tracing the thin scar that lies one inch above her right eyebrow, the mark of a fall, long ago when the pool of blood under her head made me draw in my breath and out to her. Tracing the thin ridge of her nose, the faint freckles, the delicate flutter of her breath. The full beautiful lips that form no words but curve, gently, rarely, in a smile. The soft, curly hair and tiny rounded shoulders, the downy hair on the nape of her neck, the straight back and gentle, graceful body. Her hands are like birds, long slender fingers untouched by labor or use, tapered, they make notes in the air, an ethereal musician. How do I write about this day when she is fifteen years old? I love birthdays, my own included, but especially those of my sweet children. For Sophie, the birthday is something different, something more ephemeral, something to be seized, to mark, to feel sorrow and gratitude.

Another year, another year, another year.

The Small of the Back

Some Venus

The folds of this ancient goddess' stomach. Her foot's low arch.



A memory:
When I hear the crunch of steps on gravel, outside the apartment, I know it's not him because he is so quiet. I lie there on the bed, wrapped in sheets, waiting. It is warm. The plastic blinds click together as the breeze runs through them. The word rustle. Later, his hand on the small of my back. A hand on the small of the back is a beautiful gesture. Resting there. On the small of the back. 





I wrote this down in my small blue leather notebook:

The new way to live: reading and reading and coming up to take a look around

I don't know if I heard that or thought it myself, but it's a good one.







I'm dipping into Toni Morrison's new book The Source of Self-Regard, and I've just begun Say Nothing by Patrick Radden Keefe. I'm finishing Sigrid Nunez' novel The Friend, and I've loved it. Sigrid was at Hedgebrook with me, finishing that book. She is a lovely person, someone I wish I knew better, especially after reading her book. It's curious and funny and sharp and original. I wish I could finish my book. Maybe I will later this month when I retreat to Mexico with the Bird Photographer. Immediately after I type that, I feel I need to explain. Explain how I can go to Mexico, explain how I can get away. Do I need to explain? I have a free place to stay, a generous gift from a dear friend. Sophie's father and Saint Mirtha will take care of her while I'm gone. I am determined to get away, to take respite when it is offered, by whatever means I can. Yet, I explain. We define ourselves by how much we can suffer, and who am I otherwise?







In other words, I'm reading and reading and coming up to take a look around.