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
I've baked some cakes and made some waffles and orchestrated a brunch for some friends and drunk some champagne and laughed with Carl and Oliver and cleaned up the mess and enjoyed the impossible green of the garden and a few malted milk balls, speckled like bird eggs and now I lie on the couch and finish reading Night by Elie Wiesel and ponder the meaning of all things, things of meaning I can not begin to understand. There's always a beginning to meaning and an end to what is meaningless.
Easter another word for dawn.
Here are two Easterish poems that I love by two poets whom I love:
The Palm at the End of the Mind
After fulfilling everything one two three he came back again free, no more prophecy requiring that he enter the city just this way, no more set-up treacheries. It was the day after Easter. He adored the eggshell litter and the cellophane caught in the grass. Each door he passed swung with its own business, all the witnesses along his route of pain again distracted by fear of loss or hope of gain. It was wonderful to be a man, bewildered by so many flowers, the rush and ebb of hours, his own ambiguous gestures--his whole heart exposed, then taking cover. Kay Ryan
spring song the green of Jesus is breaking the ground and the sweet smell of delicious Jesus is opening the house and the dance of Jesus music has hold of the air and the world is turning in the body of Jesus and the future is possible
I took my baby boy Oliver to an appointment today at Kaiser Permanente. Most of you probably already know that this is an HMO and that Oliver is not a baby. He will, in fact, be 18 years old in May. Good god almighty. We have not been in an HMO in twenty-five years, but this year I downgraded his and my health insurance policies because I just could not afford another 35% increase in premium for the PPO that we were on with Sophie. Sophie stays on her Cadillac plan with MediCal as a secondary policy.
Anyway.
Kaiser Permanente proved to be exceptionally -- dare I say -- efficient. We really, really liked the doctor we "picked." It was amazing, honestly, how easily everything worked -- a one-stop shop. We visited the doctor, moved to another floor and barely waited to get blood work and then another to pick up a prescription. We were out of there in less than two hours, and the co-pays were minimal. Honestly, if Sophie didn't require such specialized care, I'd be all over Kaiser for her care, too. I've always been terrified of managed care, but let's face it. We're all managed every single moment by the Powers That Be. When we went to the lab for bloodwork, we had to get a ticket with a number on it, one of those little scraps that you get in the deli department at the grocery store. That was maybe the only moment where I felt annoyed, but I let it go. So, after just one visit, I'm going to recommend Kaiser Permanente for routine healthcare -- my god, in comparison to literally ALL the other places we've sought healthcare (UCLA, NYU, Columbia, USC, Children's and Cedars-Sinai), it was the best experience. I'll keep you posted on my own physician visit which is coming up soon.
Now, let's talk about 911. We just dropped another Who Lives Like This?! podcast. This week, Jason and I had Dr. Rita Eichenstein on the show. She is a neuropsychologist and the author of a really great book. Not What I Expected: Help and Hope for Parents of Aytpical Children. Even if you aren't the parent of an "atypical" child (and this category includes children with mental health disorders like anxiety and depression, as well as diagnoses of ADHD), I think you'll find a lot of value in our discussion. What really stood out for me was some advice she gave to those parents with newly diagnosed children. Among many helpful tips, she suggested compiling a 911 list of people you can call when you need help and support. After listing these people, she suggests calling each of them and asking whether they'd be willing to be on your 911 list. I know some of you are thinking, well, duh, of course you'd already know who to call or who wouldn't say yes to being on the 911 call list? I'm here to tell you that, at least for me, it's hard to call people, to ask for help, to vent, to cry, to share grief and exhaustion. Especially when it's done, over and over. I think it would have been tremendously helpful for me to have made such a list early on in The Troubles and communicated what I was doing with those people I trusted to be on it. Does that make sense? I feel guilty when I call my friends with my latest woes, especially regarding caregiving. I actually don't even do it that much anymore and feel isolated (of my own making, I know) as a result. I do see a therapist regularly, and that is enormously helpful, but it'd be great knowing that certain friends had taken on the responsibility of being on call for me, beforehand. I know for a fact that many of us struggle with asking for help. This seems like a simple -- yet almost formal -- way to connect with others and to "allow" them or give them the opportunity to help us.
I've built another secular altar in my house, this one made of books I've purchased and not yet read. I moved them there recently in one of my weak attempts to make order in the house and reduce clutter. Basically, they were piled up next to the reading chair by the window, positioned in front of the shredder, to hide it, which on top has piles of New Yorkers and literary periodicals that I get in the mail with free subscriptions for submitting poetry and essays that are always rejected. I should say that the books are mostlynot yet read (or should I say unread?) because on closer perusal, I've read a few of them. The Lucia Berlin over there on the right (love, love love), Sing, Unburied, Sing (my god, it's good), Dreyer's English (fun and helpful with my teaching), The Friend (fabulous award-winning novel by my fellow Hedgebrookian, Sigrid Nunez), and When Women Were Birds (I've read the opening probably fifty times). The cross on the right is one of those Mexican things whose name I can't remember, but my dear friend Heather McHugh gave it to me recently, along with the little heart on the left with the cross above it. Reader, what are those things called? The Bird Photographer came back the other day from a trip to Costa Rica, where he led other bird photographers for over a week through the jungles and waterways. If you'd like to go on a bird-watching/bird photography tour to Costa Rica, please leave a comment, and I'll hook you up. Carl's pictures are, of course, astounding. Here's one of some red-eyed tree frogs:
photographer: Carl Jackson
He brought me back those little bird carvings on the left, on the top of some of the books not yet read. I've learned the bird is called a quetzal and is one of the Holy Grails of Bird Photography. You can also see a pair of pears and a poster of an old red typewriter. The gold box on the right, under the Mexican cross, is filled with cake-baking paraphernalia. Praise to those who gift me respite, to those who photograph beautiful creatures of beautiful countries, who continue to love me despite being batshit crazy, to cake and to those who write books.
About those books that I've not yet read. As you can see, I have a bit of a problem. They are piled everywhere. Some years ago I bought a Kindle with full intentions to never buy a book again. I now have probably 679 titles on the Kindle and stacks of books piled -- well -- everywhere. It's okay, though. They make me happy. I'll eventually donate them to the library, even though I should be borrowing them from the library myself. I told you this is the church of the batshit crazy, though. Right now, I'm reading NW (goddess material, as usual) by Zadie Smith. I'm also making my way through Merritt Tierce's Love Me Back (so much graphic sex!)and Anna Dostoevsky's biography of her husband, Dostoevsky: Reminiscences. I read about the last one on the wide world internets and ordered it from some secondhand place and dang, I'm a sucker for the long-suffering, devoted wife and muse to a great author trope.
Anyway.
I actually haven't read very much of late due to some television watching. Have ya'll seen the final season of Catastrophe? I'm so mad that show is over. I am absolutely not a Game of Thrones watcher (the only time I conceded to watch it with my son Oliver, I had to bolt from the room after two minutes of incredibly graphic sex and then some man had his nipples sliced off). I was out of there and back to Shtisel, an Israeli series about four generations of an ultra-orthodox Jewish family in Jerusalem. Please, someone out there, watch this show, so I can talk to you about it. I love it.
I've just eaten two slices of leftover pizza and fed Sophie some fabulous farro/vegetable salad. I'm going to work on the post that will accompany the next Who Lives Like This?! podcast, which we're dropping tomorrow night/Tuesday morning. It's with Dr. Rita Eichenstein who wrote with Dr. Dan Siegal the amazing book Not What I Expected: Help and Hope for Atypical Children. I sure hope you listen to our podcast and enjoy it as much as we enjoy making it.
I hope that everyone is out there enjoying their Sunday. In lieu of a musical interlude, here at the Church, I'll leave you with this sublime video of Yo Yo Ma playing the cello at the Mexican border, where -- you know -- hordes of horrible people are climbing the walls and entering our precious country with their dirty children, stealing our jobs and raping every white woman who walks by.
So, ya'll saw this first ever photo of a black hole, right? A grad student, Dr. Katie Bouman, "developed a crucial algorithm that helped devise imaging methods for it," according to CNN.
Whoa.
I'm smitten. I like how it's described, too:
"A black hole is a region in space where the gravitational pull is so strong that nothing –– not even light –– can escape it, and it only grows as it consumes more and more stars, planets, and gas." New York Times "The picture is also visual proof of Einstein’s theory of general relativity, which states that dense and compact regions of space would suck everything in." CNN Black holes have always lent themselves perfectly to obvious metaphors, so I won't pile on. The universe is still so impenetrable, isn't it? Call me weird, but knowing that I'm just a blip in the scheme of things gives me peace. It might be why during huge personal crunches -- those times when I'm fully into the who lives like this?! moments, I'm able to disengage and sometimes even eventually laugh at myself and everything else. Another thing -- why do we get all caught up in the idiot running our country? He's running it much as he runs his mouth. Like shit. We should just be concentrating on stuff like black holes and people like Alaa Salah, a young woman in Sudan who stood on top of a car during a mass sit-in against Bashir, the president of Sudan. She's become a symbol of the uprising and of the growing movement of female leadership. "The bullet doesn't kill. What kills is the silence of the people," she said, reading from a poem.
I'm smitten. Here's her picture:
photographer: Lana Haroun
I'm taken by everyone holding up their little light boxes to record her -- little light boxes that seemingly connect us, one to another, across miles and time. We've known about black holes, somehow, long before we could even take a photo of them. I don't even remotely understand the grappling of scientists and mathematicians and physicists over such things -- what understanding I have comes from the gut, I guess, the sharp intuitive thing I've got going, the threads of stuff filling up my brain, behind my eyes.
Black holes look like eyes, it seems, at least to our eyes.
Things are going on all over the world that make Americans' problem with our shitty leaders seem insignificant. There's nothing new under the sun, it says in ancient books. Women are rising up, literally everywhere and making change.
I got into an argument the other day with one of my girl students, about gun ownership, of all things. She had asked me whether I'd shoot someone who was trying to kill me. I'd told her, No. She was incredulous and upped the ante by asking whether I'd shoot someone threatening my children. I told her how much I disliked hypothetical questions like that because, really, how would we know how we'd react in such a situation? I told her that I had made a sort of pact with myself to eschew violence (yes, I used the word eschew because -- TEACHER). I told her that I hated guns and thought it was unnecessary to carry one for personal protection. I came short of telling her that the 2nd Amendment was bullshit because -- well -- it wasn't appropriate. I told her that killing anyone was kind of like a black hole to me, the ultimate black hole. This young girl's opinion bummed me out. The whole time I was talking to her, I wanted to stop. I wanted to disappear into a black hole. I had never seen a photo of a black hole because there wasn't one, though. I wanted her to disappear into a black hole. I wanted us both to come out on the other side and into the Antelope Valley where the rains have created what we call a superbloom -- so many flowers and so much color that you can see it all from space.
A woman had a seizure.
The light fell just so on an orange Gerber daisy in a blue vase.
A squirrel ran across a thick power line
and it was a rope that cut the palm frond
hewing blowsy
like hair from the thin trunk
more stalk than stealth
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.
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.
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.
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
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 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.
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.
