Eye Can See All Obstacles In My Way

 

The good news is that I was in the hands of a very capable retinal specialist who was able to repair a tear in my retina yesterday morning. I don't have any restrictions in movement except for bending down or lifting weight over 20 pounds or exercising for a few weeks (the last being, as those who know me, music to my ears). I have a very gnarly left eye and feel vulnerable and disoriented. I feel as if I were on the other side of a ViewMaster, the tiny figure that is being looked at, clicked on, passed by. It’s also as if I were looking out at the world from inside an aquarium, the surface line of water sloshing across my eye, dark on the bottom, light at the top, shadows.

Read the rest on my Substack, if you'd like. 

Pandemic Darts

Reader, Sophie is full of grace. She's a little lady. She loves to be outside. Really, that's all she wants to do -- to be outside. She loves the trees blowing in the sky. She can't walk as well anymore, but she enjoys sitting on the ground. Her eyes light up when she's outside. There's a lesson there, I know.





I had a conversation with Nice Neurologist the other day about Sophie's resistant seizures. We never really talk about anything else. Sophie's seizure control is okay -- but it really is all relevant. What she endures and what we think is a good day or week or month is a nightmare for others. A friend recently called me for support as she'd found her four year old son under the water, seizing. He'd been taking a bath with his older brother. She called me from the hospital. Her son was okay, but she wasn't. The boy hadn't had a seizure in four years, and she was wrecked. She should be wrecked. There are few things worse in seizure world than the bathtub seizure. Nakedness and thrashing and the water a killer. Yet, he hadn't had a seizure in nearly four years. How have I watched my daughter seize nearly every day (we have had brief periods of total seizure freedom) for twenty five years? More importantly, how has Sophie seized so many times yet loves and lives to be outdoors? While I listened to the panic and horror in my friend's voice, I couldn't help but think no wonder I'm dissociating half the time while Sophie is seizing. I don't really know how I do it. How I've done it. This shit is hard. I was struck by how I know this, yet I still don't entirely rest in it. I still feel agitated or guilty that I'm not doing enough, researching enough, trying to figure it all out. Figure it all out. So, back to the conversation I had with Nice Neurologist the other day. We were in a bar playing darts. He said, What about giving her a pulse of Ativan in anticipation of her bad days? and threw his dart. My turn. I don't understand why that would help? Do other people do that? I threw mine. Well, let me think about it. I'll look into the research, see whether it's been done. He threw another dart. Our darts were all over the bar at this point, a Dilantin hanging off of the seat of a chair, an old-school Diamox wedged into the front of the bar, Ativan dangling from the back of a stool. A guy walked by pulling one out of his neck. Nice Neurologist aims but generally misses. I throw wildly most of the time, but when I really concentrate and listen to what I know, I hit the target. Or maybe it's the opposite. It's only when I throw wildly that I hit the bullseye. No amount of concentration or attachment or expectation improves my aim. There's a lesson there, I know, and it's how I do it.

I don't know why I'm telling you this now. During a pandemic when the whole country is going mad. I guess I'm encouraging you to hang in there. The whole "we can do hard things" mantra. I don't know why, but we can. Lots of people do hard things, literally all the time, for years and years and years. Something is changing, and we have no idea what's happening. I think we need to think wildly and let go of our concentration, our attachments and our expectations. I think we'll aim true that way.

The Edge of the Continent

What's happening with you? We're living large out here in Covid-California times. I haven't posted in over a week, but I've composed many in my mind. That was our Fourth of July celebration. We weren't celebrating #TerribleAmerica but tried to make the best of the day. I don't feel like using this space today to rant and rave about this country or the POSPOTUS, but I will inform you that I don't think I've ever been this stressed out in my lifetime and it's not just about the pandemic, the POSPOTUS and the Assholes Who Still Support Him. There is so much stuff happening, none of which I can control but all of which I am juggling because -- well -- apparently that is what the universe is currently demanding of me. I am on edge. I am the edge. My ex continues to detonate giant mushroom clouds; I am now supporting my tenant whose job was affected by Covid, who can't pay rent and who is entitled to stay rent-free as long as the moratorium is in place.  Don't ask. I've started my baking business up to help make ends meet and am currently deep into peach pie. Last night, Sophie had three giant seizures in a row and I changed over five diapers in two hours and then I just told Henry to keep an eye on her, got in my car and drove toward the edge of the continent. I played Ennio Morricone's music because he died yesterday, and I cried and wanted to yell but then I got to the ocean, so I parked the car and walked out onto the sand and just stood there, in the dark, listening to the surf, the lights of the Santa Monica pier bright in the distance. No one was on that ferris wheel but it looked pretty in an apocalyptic way. The world is vast and oh, so weird.

I felt better.

Today I am thinking of you, Reader. How are you doing? What are you doing? Reading? Listening to? Watching?



Here's a poem:

Not Writing

A wasp rises to its papery
nest under the eaves
where it daubs

at the gray shape,
but seems unable
to enter its own house.

Jane Kenyon (1993)

Day 60

I've been ordering fresh produce from a local cooperative, and yesterday's delivery was a bonanza of greens and lettuces, radish and baby broccoli, a scattering of herbs and lemons, a grapefruit, some blueberries and onions and a couple of tiny worms. The rendering -- the washing the drying the organizing the storing -- of all this fresh produce gets my tiny little mother mind™ thinking about convenience and waste and the myriad depressing ways a lot of us live, saying we're too busy or can't be bothered or whatever. Whatever. I'm no farmer girl, no rural girl, no grower of my own vegetables nor do I have any desire to do any of that. What I do love is fresh food, recipes and cookbooks and puttering around in my kitchen doing domestic things. I also like fancy things -- half and half in a glass bottle, tiny little jars of pot de creme from France, a weird Italian green that tasted salty like the ocean or what I imagine a cactus (it looked like one). I don't have much to say other than I've been depressed in a way that I can't remember being depressed and I'm very much aware of the luxury in that statement and the unoriginality in the condition. I'm angry, too, but I'm made of anger in no small part and as the gray takes over my hair I will try to be as exuberant as unapologetic because it's all about letting go letting god letting.






as much as i try to be an easygoing, stretch your wings and fly type... i just can't stop trying to burst people into flames

a card that a beloved sent me



People I'm Currently Trying to Burst Into Flames In No Particular Order, Except for the First Three:

Donald Trump
Mike Pence
Mitch McConnell
Men with submachine guns
Men who assault women
Men who kill black people
Men who shoot children
Men who beat up women
Men who make stupid jokes
Men who harass women
Men who are religious zealots
Men who date girls
Men who refuse to apologize
Men who can't get their shit together

Feel free to add to the list.

We Can Do Hard Things, Monday 3/30/20

to Chris Rice

Some of you have asked -- my boy Henry is up in Washington. He lives off campus with a few friends and is doing "school" virtually. I understand from both boys that school is really just "school," that they don't feel they're actually learning and that it's all bullshit and boring. I hear the word boring a lot, and to tell you the truth, I feel grateful that they're bored. At least for now, because who knows what sort of long-term effects this strange, strange time will have on them, our youth, our hope, our future?

I miss Henry.

Sophie just had a huge seizure that rattled me. I'm still capable of being rattled despite being tens of thousands of seizures in. Epilepsy really sucks. When will this be over? Never.

I read an article by Aisha S. Ahmad titled "Why You Should Ignore All That Coronavirus Productivity" that was published in the Chronicle of Higher Education. The writer says:

Yet as someone who has experience with crises around the world, what I see behind this scramble for productivity is a perilous assumption. The answer to the question everyone is asking — "When will this be over?" — is simple and obvious, yet terribly hard to accept. The answer is never.

It's not depressing, though. It's very wise, and what it did for me was to affirm what I already know, have already experienced yet willfully forget or bury or don't have the time to remember. What I already know is that I can do hard things. I know this hard thing is like no other hard thing in its scale, so I won't use the word but. It's not about me. What I can offer, though, is my tiny little mother mind™ -- remember that? I do. It's the part of me that was left after Sophie was diagnosed on June 14th, 1995. The rest of me came before that. People are used to things being recoverable, and we live in a culture -- whether religious or not -- that makes faith and hope virtues in what to me is a weird way. Some things are just not recoverable. They are irrevocable. I drove to Ralph's grocery store yesterday, wearing a mask and gloves. I have tried to limit myself from any of the shopping, but I really needed to see what was there because I'm the one planning and making the meals. I parked my car and stood in a long line that snaked behind the building, each person standing six feet from the next. We were let in one at a time, in small groups, and we shopped that way, too. Everyone is shopping that way. My eyes filled up with tears and my mask and warm breath made them fog up so I couldn't see. A long time ago, I was driving my three young children around the shitty from one of Sophie's various therapies or something. I'd gone through the drive-through of In N Out to get some french fries for them. Oliver was an infant, facing backwards, but Henry was three years old and sat in a car seat next to Sophie who was also in a car seat. Henry fed Sophie french fries, one at a time, cheerfully. Cheerfully. Or matter of factly. Matter of factly. I glanced up in the rearview mirror and teared up. The words It will never be normal for them rose up in a snaky cartoon-like bubble, filling the entire back seat. Irrevocable. I think that's why we cry. We are sad for things irrevocable.


I was talking about this with my friend Chris, who is no stranger to things irrevocable, to apocalyptic experiences, who is wise and like a big sister to me. We also know that we can feel joy anyway, live anyway, I said. She agreed. And that my friend is the ultimate example of holding two seemingly disparate ideas in one's mind at the same time and still being able to function. 

I can do hard things. You can do hard things. We can do hard things.

...be slow. Let this distract you. Let it change how you thinnk and how you see the world. Because the world is our work. And so, may this tragedy tear down all our faulty assumptions and give us the courage of bold new ideas. 
Aisha Ahmad

We Can Do Hard Things, Friday 3/20/20

I guess I'll start dating these posts in the title, since I imagine there are going to be a whole lot more we can do hard things-themed posts. It's weird to be coming here again daily, reaching out, knowing you're out there you and you and you.

How's it going?

I finished up a week of virtual teaching -- 17 classes. I am so damn grateful for this job, for these students, for the routine, for the subject matter, and I'm winging my caregiving on the side. Sure, it's only day five and here in Los Angeles we're in a kind of lock-down but Sophie is ever my teacher.

That being said, after dinner I felt like I was going to implode so I went for a walk in the neighborhood, the air was clear and crisp, the clouds blue puffs the streets silent. I passed a solitary man on the sidewalk who stepped to his right and me to my right and thus we passed in a weird lock-step dance of avoided intimacy.

I'm obsessed with this article: Is This American Resilience? and would love to discuss with anyone. Thoughts?

What else is there to say? I feel so heavy, so filled with dread. Cleaning helps.

What I've Been Doing

Photo by the inimitable Carl Jackson,

I bet you're wondering what I've been doing since I last posted when the year was young -- only two days -- and so filled with promise and resolution and new beginnings. Well, we're eighteen days in, Reader, and so far my favorite thing about the new year is writing 2020 instead of 2019. It looks better, it sounds better, and I'm hoping it gets better.

So, what have I been doing?

1. Reading: I've read Conversations with Friends by Sally Rooney which I really liked (she's just such a readable writer), but I didn't like it nearly as much as last year's Normal People. I'm still reading The Water Dancer by Ta Nehisi Coates and finding it difficult. Dare I say he's a better non-fiction writer (beyond brilliant) than fiction writer? As the kids say, IMHO. I'm almost finished with the sensational The Yellow House: A Memoir by Sarah Broome. It's so good. In the bathroom I've got this great book called Sharp by Michelle Dean.  The subtitle is "Ten Women Who Made an Art of Having an Opinion," and so far I've gotten through the first profile on Dorothy Parker. I'm not one of those people who spends a lot of time in the bathroom on the toilette or doing my toilette, but I do like to pick up something interesting and short to read that I can come back to and easily pick up where I left off. I've also just begun to read Garth Greenwell's Cleanness because two of my writing mentors recommended it, and the editor of MGDB* touted it as well. I read Greenwell's earlier book, so I'm expecting this to be as good. The sex is very, very graphic. By the way.
2. Going to movies: I've seen "1917," which sucked me in and under as I've always been partial to the Great War, if one can be partial toward wars at all. Aside from sitting on the edge of my seat throughout the movie and being enthralled by the cinematography and the two beautiful co-stars, the main feeling I had was a sort of bemused rage and incredulous sorrow. WE MUST DO ANYTHING WE CAN TO MAKE SURE THERE ARE NO MORE WARS. Honestly, nearly every war movie I've ever watched has manipulated me into this emphatic imperative. Wars are hideous. There is no glory or honor in them. They are madness and insane, and anyone who justifies killing on a grand scale like that is spouting propaganda. Speaking of wars, I've also seen my beloved Terence Malick's "The Hidden Life" which is another war movie, but it's about goodness -- about what it means to be deeply moral and good. I saw Goddess Greta Gerwig's "Little Women" and was utterly enchanted by it, transported in exactly the same way I was transported by the book -- any book, actually -- as a very young girl. That took me by surprise as I had never seen any of the other renditions and only had the book to compare it to. The movie was just as much about writing and reading as it was about being a sister and a woman chafing at societal constraints. I absolutely loved it. I've watched some Netflix and Amazon stuff, too -- most memorably, "The Two Popes" which was more a story of two human beings than the weird fuckery of the Catholic Church. I think that's because Anthony Hopkins and especially Jonathan Pryce were exceptional. Reader, I still can't abide the Catholic Church and that dislike would include Francis, as he is still THE POPE of an institution that I believe should be dismantled.
3. Teaching at two different schools: I have around 60 students that range in age from 13 to 18. The majority are in a small, private, ultra-religious high school here in Los Angeles that is, at the very least, giving me a lot of material for a future memoir. No more need be said or will be said. Stay tuned, though. I have a few students in another, very highly specialized school, each of whom I adore. Truly. One of my students began reading Carson McCuller's The Heart is a Lonely Hunter and on a day when I wasn't even teaching her, she poked her head in my office and said, Oh my god! I love the book you picked out for me! I was having a particularly difficult time finding something for another of my students to read and relate to -- and then I thought of Flannery O'Connor's short stories. The kid is sucked in and under and very, very into "A Good Man is Hard to Find" and "The Life You Save May Be Your Own." Reader, this thrills me to no end. 
4. Having my mind blown without the use of psychotropics: I attended a 12-hour Holotropic Breathwork workshop last Saturday. I haven't fully processed the experience and don't have the words to describe the journey I went on during the 3 hours of breathing I did, blindfolded and  carried by incredible music that filled the room and my body with sound. You can read about holotropic breathwork on the world wide webs. I released a whole lot of shit and am still feeling the effects in a positive way over a week later.
5. The tedious work of what Divorce Lawyer World calls "Discovery." I will say no more except that I have been set into a Matrix, a strange and mad world of no reason, where everything is transactional and my worth measures in negative numbers. It's a good thing that one of the hallucinations I experienced during the Holotropic Breathwork session was my generous body as Mother Earth, merged with the indigo Cosmos and lit by stars, my children rushing toward me as beings of power, my pelvis on fire and the only thing to fear a strange, searing pain that ran up and down my left side but, allowed to speak for itself, was released and transformed into dance. Honestly.

* My God-damn book, which I have worked on only in my brain with not a thing on paper to show for it for over a year.

 

Dogged and Dogged

found on the internets

The thing about a story is that you dream it as you tell it, hoping that others might then dream along with you, and in this way memory and imagination and language combine to make spirits in the head.

Tim O'Brien, The Things They Carried

I am in a dream these days, some part a deep and abiding sense of being loved and another a nightmare. I walked down the dingy halls of the courthouse earlier this week, dread and bewilderment masked by cheer and a dull gratitude for beloveds flanking me. What does it mean to be unreasonable? The word contempt. Marriage. Divorce. Years. Papers filed by lawyers and a whole system constructed by. By. The halls of justice are really halls. The metaphors of justice do justice.  There must be a system. I stare at the back of a head whose folds I know. Metta. The Virgin Mary. Those old tricks. I age ten years. I dig for humor some days later, dogged and dogged and find it in the 55+ menu at IHOP where I am not questioned and order a full plate breakfast of eggs, sausage, toast and hash browns. The coffee was good.

When You Can't Stop Crying

I've been hearing all kinds of wise talk these days as I seek the counsel of people who love me. Yesterday, after twisting needles into parts of me that were clearly storing an inordinate amount of anguish, Dr. Jin spoke about Chinese armies who fight one another.  The side that doesn't want to fight or who is fighting out of integrity and truth against evil wins, she said in so many heavily accented words. Regardless of outcome. This felt strangely reassuring.

Today I was told by one of Sophie's caregivers that when you can't stop crying, you haven't cried enough.

Pictures, You Need Pictures: Part 2: Rome

I'm sorry, ya'll. I'm sorry that I haven't kept up here. I haven't kept up really anywhere, and that's because I'm involved in a very ugly, very upsetting and very stressful post post divorce thing. That's all I can say about it, and I would appreciate all your good thoughts and wishes and metta for all those involved. I am bewildered and upset and disbelieving and depleted and very, very sad.

Onward to Rome.

Henry and I had an amazing time in Rome and Florence. We stayed in a friend's apartment near the Vatican. The building was about five stories and had one of those incredible cage elevators and the winding marble floored staircases.

Please take my picture in this elevator, I asked Henry.

Every room in the apartment looked out on the great dome of St. Peter's. I'm not kidding. As the kids say, "Ridic."

Those are my legs, profoundly weary from tromping about 20,000 steps a day in boots and sneakers that somehow didn't cushion the 56 year old caregiver body like they did 35 years ago.

Everything is so damn beautiful and big and ancient and filled with centuries of longing and strife and reaching toward beauty and the divine. And suffering.

Our own struggles aren't lessened by witnessing ruins of the past, but they are integrated into something much larger than ourselves.

Henry and I made some remarks in poor taste about St. Peter's Square and the Vatican. Mea Culpa.

We walked about a million miles a day, and I was usually trailing Henry, as evidenced by the photo below.

I bought a pink ring, and it perfectly matched the pillows on the purple sofa at our friend's apartment.

We ate pizza, pasta and gelato every day.

Shortly after the above photo, after we'd thrown our coins in the Trevi Fountain, we both had nervous breakdowns because of the crowds. Honestly, Reader, Rome is insanely crowded.

If you look closely, you get an idea of the hordes of people streaming down that central street toward the Spanish Steps. We are standing at the top of them, here, marveling at the view.

We got the heck out of Dodge, bypassing the crowds and roaming past the above door.

The skies were Felliniesque, big white clouds and blue.

Sigh.

I was there two weeks ago.

There WILL be a Part 3, I promise.

What's Elusive

"The Unicorn"
Los Angeles Metro Bus

Here's the good thing. My old friend Bill Martin has this new show out -- a comedy on Thursday nights called "The Unicorn." I went to UNC with Bill, and he is still the sweet, incredibly funny man I knew more than thirty years ago. Ya'll should watch his show because it's also sweet and very, very funny and we all need funny, right?

Here's the bad thing. I need a lot of funny these days. I am not going to mince words. There's a lot of shit going down in these parts -- most of it unbloggable. I guess I am going to mince words. There's a tremendous amount of hate and rage roiling around me personally. I need all your positive juju and miracle-making, please. The other night I got into my car at 10:30 at night and drove all the way to Venice Beach in my robe and nightgown. I screamed in the car and then listened to Van Morrison sing "And It Stoned Me." I listened to Bob Marley sing "No Woman No Cry." Sophie's fine. The Brothers are good. I am not fine or good. I am digging deep to find my way back to the calm and peace that I know is somewhere within, still.

I love this poem:

Before Winter by Kwame Davis

After the Doctor

The light in Sophie's bedroom in the late afternoon is incredible. I'll walk by and just stand there staring at it and her and wish I could walk into it, truly walk into light so that I might become light again. Because I'm near spent. Because I almost never feel light these days. I feel heavy, literally and figuratively. I am not as resilient as I once was or perhaps, if I'm kind (always kind) to myself I might attribute this heaviness to the years, the years or perhaps to upcoming transitions (Oliver leaving), those existential changes that take even the strong by surprise in their intensity. Today I went to the doctor, and I tried to explain this malaise, this lack of resiliency, this burning feeling in my throat that persists and this ache in my hips. Is something wrong? Really wrong? I think, I wonder. I have scanned the worldwide webs, have allowed the slip in -- you know how that goes, right? -- of guilt, of reckoning, because, really, how fortunate can one possibly be when one endures so much stress on an ongoing basis? I let that slip in my mind, the thought that it was all going to come home to roost, as they say, that instead of morphing into my peasant grandmother and die demented at 88, I'd get sick and who has time for that? I spoke with rue of my weight of the necessity of exercise and losing weight and the doctor agreed. You'll feel better, he said. And what about these? I showed him the starbursts of blue on the backs of my legs. They don't hurt, I said, and he said, I wouldn't worry. The blood work was fine, the blood pressure is normal and the new burn in my throat from stress, he said. Here, take this. The way these things are doled out, so casually and why would he know that I in my peculiar writerly way will note this, will note the casual shrug, the burn in the throat reduced to acronym (GERD) and take this for 8 weeks and do this (exercise) and that (lose weight) and you'll feel better but I'll know better from better and there's still that light, nearly spent.

Here's a poem by Mark Doty:

SPENT

Late August morning I go out to cut
spent and faded hydrangeas — washed
greens, russets, troubled little auras

of sky, as if these were the very silks
of Versailles, mottled by rain and ruin
then half-restored, after all this time...

When I come back with my handful
I realize I’ve accidentally locked the door,
and can’t get back into the house.

The dining room window’s easiest;
crawl through beauty bush and spirea,
push aside some errant maples, take down

the wood-framed screen, hoist myself up.
But how, exactly, to clamber across the sill
and the radiator down to the tile?

I try bending one leg in, but I don’t fold
readily; I push myself up so that my waist
rests against the sill, and lean forward,

place my hands on the floor and begin to slide
down into the room, which makes me think
this was what it was like to be born:

awkward, too big for the passageway…
Negotiate, submit?
                           When I give myself
to gravity there I am, inside, no harm,

the dazzling splotchy flowerheads
scattered around me on the floor.
Will leaving the world be the same

—uncertainty as to how to proceed,
some discomfort, and suddenly you’re
—where? I am so involved with this idea

I forget to unlock the door,
so when I go to fetch the mail, I’m locked out
again. Am I at home in this house,

would I prefer to be out here,
where I could be almost anyone?
This time it’s simpler: the window-frame,

the radiator, my descent. Born twice
in one day!
                In their silvered jug,
these bruise-blessed flowers:

how hard I had to work to bring them
into this room. When I say spent,
I don’t mean they have no further coin.

If there are lives to come, I think
they might be a littler easier than this one.

Mrs. Schachter

My twelfth grade students are reading Elie Wiesel's Night, his memoir of the time he spent in a Nazi concentration camp and the struggle he had with his intense faith. No matter how many times I've encountered anything pertaining to the Holocaust, I am struck, slayed, overcome, and this short testament is no different. There's a harrowing scene early in the book, immediately following the evacuation of the ghetto in which Wiesel and his family have been living, when he and the others are being transported in a cattle car to the camps. Of course, they have no idea what's going on nor what is to come, but one woman -- Mrs. Schachter -- persists in screaming and crying about some sort of fire!, fire!, fire!, even as her small boy clings to her and begs her to stop. My students and I had a discussion about this part of the memoir and Wiesel's recollections -- was Mrs. Schacter hallucinating under her extreme distress? Was this a prophecy? Was this a divine warning? Why did Wiesel include this part in the memoir? As they grappled with the questions, I told them that there was no right or wrong answer. I just listened and offered my own paltry thoughts.




Last night I had a sort of breakdown prompted by a few external situations regarding Sophie's childcare, her upcoming IVIG treatments that were delayed by insurance issues, her doctor's negligence in ever following up and calling me back, one of my son's demands, and my ex-husband's -- well -- I won't go into that. My collapse and crying was also, obviously, prompted by mostly internal situations regarding -- well -- everything. Mothering. Disability. Inadequacy. Resentment. Exhaustion. Despair. I feel acutely during these times that I just can't go on.






I texted early this morning with a dear friend across the country. We spoke of our attachment to our children and to the significant men in our lives -- how the boundaries are mutable, how we are hard put to figure out just when and where and how we "set the patterns when we became mothers," and how difficult it is to "escape" them, how our definitions of ourselves are seemingly dependent on those given to us by our children and men. "And it's not their fault!" my friend said.



It's all impossible, I think when I am most under duress, and that helps.




I just finished reading Sophia Shalmiyev's memoir Mother Winter. It's a remarkable book about a motherless daughter told in fragments. I will be thinking about it for a long time. I've read several interviews with the author and even engaged with her on Facebook. In the interviews, she talks about the roles women and men take on when they parent, particularly in regard to what I've read elsewhere as emotional labor. I hesitate to write here about my own resentments because I know their source is partly of my own making. I spoke about identity this past weekend as a mentor at a seminar for women who are mothers of adult children with disabilities. I also listened to several women talk about marriage, how their own long marriages had succeeded. I was struck by how each of these women -- how all of these women -- were doing the work, the emotional labor, even as they extolled their husband's "kindnesses" and "generosity" and so forth. I'm not sure I can get there -- here -- on this blog, today, really grapple with these themes and thoughts. But I know they are at the root of my despair.

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.

Here's the Thing

I'm loathe to use the word, but it's stress. The repeated whittling away, the curves belie the point so sharp I could peck through a vault. Why write it here? Why not? Perhaps it's Sophie doing better, knock knock knock, so the rest comes pecking, knocking, whittling away, soft skin yield.

All truths wait in all things,
They neither hasten their own delivery nor resist it,
They do not need the obstetric forceps of the surgeon,
The insignificant is as big to me as any,
(What is less or more than a touch?)
Logic and sermons never convince,
The damp of the night drives deeper into my soul.

Walt Whitman, Leaves of Grass

Sophie B. Vs The Great American Healthcare System, Part 1,000,000: ROUND 2

Article 1

Please See Round One Timeline HERE Before Proceeding and for Explication of Article 1, above. Note that I can get you a copy of the Explanation of Benefits, regarding this decision, AT NO COST, thanks to the Insurance Company, so email me if you'd like one.





Big Girl Panties ON?
Loins Girded?
Ready?

ROUND TWO TIMELINE:


September 4-6, 2018

Mother/Conservator makes repeated calls to Neurologist and Neurology Office to check on progress of Plaintiff’s appeal to get necessary IVIG treatment for ESES. Neurologist reports that Blue Shield of CA does not respond to repeated attempts to call. Plaintiff appears further weakened and distressed, drooling, difficulty swallowing and drinking. Mother/Conservator expresses distress and frustration, and Neurologist responds appropriately, assuring her that “we’re going to get this done.”

September 7, 2018
10:30 am
Mother/Conservator makes morning call to Neurologist for update on Plaintiff’s appeal to get treatment for ESES. Note that TWO WEEKS have passed since diagnosis was confirmed and order for treatment was made. Neurologist states that if his efforts to appeal to Blue Cross of CA are fruitless, he will admit Plaintiff via emergent care for hospital administration of infusions. (Mother/Conservator states that her own condition is extremely stressed out. She actually posted the following picture (Article 2) on her social media page but assures all parties involved that her rage as depicted in picture with weapon in hand is metaphorical.) 

Article 2

10:43 am
In the middle of Neurologist's statement that he will admit Plaintiff to emergent care for hospital administration of medication if he is unable to get through to Blue Cross of CA by end of day, Mother/Conservator receives a text message. Because of her finger dexterity (considered extremely high as measured by an expensive personality and skills test administered in the last century by a famous company) and multi-tasking skills, coupled with afore-mentioned extreme stress (which renders Mother/Conservator more like larger mammalian creatures on guard and extremely alert faced with threats to offspring -- think bear, moose, etc.), Mother/Conservator switches over to text messages and reads this (Article 3):

Article 3 with professional names redacted with quasi-religious symbols that were inserted by Mother/Conservator, despite her lack of religious faith

Mother/Conservator shrieks news of approval to Neurologist who is speechless, given that he has been unsuccessful in reaching Insurance Company. Mother/Conservator wonders aloud what the hell has happened here? Her tiny little mother mind™ is busy, busy wondering whether this weird and random event is somehow related to her blog post from the previous day and the many thousands of "hits" it has received, but her body, always many, many steps behind the tiny little mother mind™, feels a rush of adrenaline and she tells The Neurologist that she will hang up and call the Nursing Agency to make the appointments for Plaintiff to receive treatments. Because her body is in a riot, and her tiny little mother mind™ is busy, busy, Mother/Conservator does not remember how she hangs up from Neurologist but believes he asked her to let me know when Plaintiff gets her schedule of infusions.

10:45 am

Mother/Conservator calls Nurse at Agency who has texted her the GOOD NEWS (the lettering of which the tiny little mother mind™believes to be rather Trumpian and is amused by this and then quickly horrified because part of the extreme stress is due to the constant worry about the healthcare system and the steady erosion of what little benefits the Affordable Care Act has conferred upon Plaintiff and family and hundreds of families that Mother/Conservator knows, benefits which are under attack even as this is typed), and Nurse at Agency tells Mother/Conservator that just that morning, the Agency received a letter from Blue Shield of California with a reversal of former denial. See Article 4.

Article 4

Both Mother/Conservator and Nurse at Agency laugh incredulously at this seemingly miraculous turn of events and then move forward and set up Plaintiff's schedule for infusions immediately.






ROUND TWO:

Sophie B vs. The Great American Healthcare System

WINNER: Sophie B.
LOSER: The Great American Healthcare System and Mother/Conservator's Relative Sanity (See Article 5)

Article 5