Saturday, June 22, 2019

We All Know This Is Not Right


I'm beside myself about this.

It seems irredeemable, in the vein of the Native American genocide or slavery. The Holocaust. The actual conditions under which these children and people have been subjected are horrendous, but it is the people that gaslight, argue, justify and prevaricate about what is happening that freak me out the most. We all know that this is not right.

It seems like it might be the end of us.

I'm sitting on my bed typing on my fancy laptop, about 129 miles from the Mexican border. It's hard to think straight or do anything at all.

What does it mean -- this beside oneself? I think of metta -- loving kindness directed first toward oneself, then toward someone you love, then toward someone with whom you have difficulty, then toward all.

May I be well. May you be well. May all sentient beings be well.

Terrible America.

I remember the practice of tonglen.

Breathe in suffering. Breathe out love.


WHAT ELSE CAN YOU DO?

Three Ways to Stop ICE's Detention Policies




Sunday, June 16, 2019

Negative Capability




Several things dovetailed in my mind, & at once it struck me, what quality went to form a Man of Achievement especially in Literature & which Shakespeare possessed so enormously — I mean Negative Capability, that is when man is capable of being in uncertainties, Mysteries, doubts, without any irritable reaching after fact & reason — Coleridge, for instance, would let go by a fine isolated verisimilitude caught from the Penetralium of mystery, from being incapable of remaining content with half knowledge. This pursued through Volumes would perhaps take us no further than this, that with a great poet the sense of Beauty overcomes every other consideration, or rather obliterates all consideration.

John Keats

Thursday, June 13, 2019

Super Nose

Guess what's in the bag?


My ex-husband once told me that he thought I was a super-taster or had a super-nose (he's a chef), but my kids always mock me when I ask, what's that smell? They think I'm prone to exaggeration in addition to being, possibly, the most annoying human on the planet. I don't want to make this post one of those kid-basher ones, filled with the cliches of teenagers and the insufferable arrogance of young adults (I am perfectly aware of my own insufferable young adulthood but shhhhhhh, don't tell my parents). I don't want to badmouth The Brothers because they are divine in many respects, but damn if they haven't been helpful or even supportive in the rat saga of this past week. Neither agreed to handle any trapped rats (my feminism comes to a screeching halt when it comes to dead rats in traps) and last Saturday, after the traps were set and lined up behind the stove and the microwave stand in the kitchen, and we all heard the most horrific clatter and then silence, no one stepped up to check it out. Well, Henry did actually come out of his room with a bat and Carl did shine his phone light behind the stove, but the only thing we saw was one of what we thought were five (this is a crucial hint) traps a little skewed. No rats, though, and everyone carried on their days and nights as if nothing was the matter, as if roof rats, flying through trees and into the attic and jumping from vents onto pot racks over stoves and nibbling beautiful pears and cherries and making their way into the dining room to feast on the bits and pieces of food that fall from the wheelchair and then making their way back to their home or nests in the Christmas decorations and vintage toys and suitcases and skittering all about were NO BIG DEAL, were a problem that would magically take care of itself because that's the way things went in their home with their mother lying about all day.










The days went by.












I think I smelled something a couple of days ago but was met with the usual derision and mockery. I don't smell anything, they said and then rolled their eyes or did what boys do when my back is turned. I'm annoying -- it's annoying -- when I twitch my nose and sniff.  Today was the day that The Rat Man was coming back to seal all the holes in the house where the rats were coming in and out. I planned my day around this event because The Brothers were busy. I imagine the gears in their adorable heads clicking, clicking, pondering. What does she do all day, anyway? Does she even exist outside of my supreme sphere? The Rat Man arrived on time, bless him, and began his work. He is a peculiar guy in the way that certain occupations command peculiar, but Reader, I love him. When I told him about the clattering episode and asked him to shine his light behind the stove, he complied and then I swear I saw his nose twitch and he said, I smell rat. I practically shouted, I SMELL SOMETHING, TOO! and then thought about jumping up and down in excitement (not about the rat but because having someone actually confirm my suspicions which means affirm my skills, my extremely honed intuitive senses, my super-nose, my infallibility, etc. etc. is everything in these late middle-aged times) but instead said nervously, Do you see that fifth trap a bit at a distance from the other four? And he got down on his knees and claimed that the smell was urine and then he said, no, it's rat, and where's the sixth tra -- and before he got out the p and just as I said, SIX? I thought there were only FIVE? he said, I got him! Do you have a plastic bag? and I ran and got him a plastic garbage bag and reverently shook it out and handed it to him and left the room.

We have one rat bagged and every little hole in this hundred year old house screened up and against them. I texted The Brothers and Carl the good news and included a bit of my own exultation over smelling something funny. No one has acknowledged this, of course, but Henry did text me back:


Monday, June 10, 2019

Just Ten More Minutes



Here are 3 reasons I might consider relocating to China:
1.
Sophie had an unexpected seizure this morning, right before I fed her breakfast, and instead of waiting for her to fully recover, I acted impatient and shot a syringe of her medicine into her mouth which I believe went down the wrong hatch which precipitated a bout of coughing and gagging which necessitated me putting together the suction machine and suctioning her mouth for what seemed like a half an hour which necessitated a 911 text to my friend Sandra about my inability to do this. I believe I texted I can't do it and she replied What's happening? and I said life and she said, then you can. And it's all fucking impossible. And you can. I then listed a litany of complaints and wondered if I should go on or try some gratitude? Sandra texted back:


In a nutshell -- or should I say the nutshell, Sandra's advice is to take time and whatever horrors it's throwing at you in ten minute increments. Can I do it for ten more minutes? Another 10? Another 10? Until I get through another full hour...then day. Suffice it to say that the 10-minute increment rule worked for me today, and I managed to get Sophie to her day program, but I've said it before, and I'll say it again: I'm done, toast, burnt. Sandra sent me this, too:


Reader, I do love a good sign.


2.
I'm struggling financially despite a near full-time job and will soon have two sons in college. Will I ever get ahead? There's my actual head, I suppose, which is stuffed full of all kinds of lovely things, but if it weren't for my neck, it would have long since spun off into the cosmos. Is there such a thing as ahead? I love my job teaching English, but there's no work over the summer. I've put together a few writing workshops and am still baking cakes, but neither is a living. Sure, I'm grateful for the help given to me by my parents and by the State of California, but I feel shackled and can't help but fantasize about a simpler life -- something I imagine is as illusory as getting ahead.



Are you still here, dear Reader?

3.
We have a rat infestation in our attic. Yes. We have a rat infestation in our attic. One more time. We have a rat infestation in our attic. 



Did I ever tell you the story of the job I accepted to teach English in Taiwan upon graduating from college? I was obsessed with all things Chinese -- had studied the language for two years, read avidly the poetry and religion and history and was just gobsmacked by the possibilities. I was 21 years old with all of life in front of me. Alas, I was persuaded to give that up for -- let's say -- love, and while I don't regret the choice I made because it brought me the rest of my life, I have a chance here to -- well -- flee that rest of my life. Reader, do you wonder? Is she serious? Has she lost her mind? Was it a rat that drove her to it? 

Stay tuned. Just ten more minutes.

Wednesday, June 5, 2019

Sunbathing Today

photo by Lauren, Sophie's aide

That was the text that Lauren sent me today, along with the above photo of Sophie. She's doing okay, dear Readers, since our last conversation here on the old blog.

After the shitshow I described previously, Sophie had another horrendous reaction to the Depakote -- well, maybe not horrendous, but she was rendered barely conscious by the combination of the new drug, the benzo she's been on for 12 years and the CBD and CBDa. I had a conversation with the Nice Neurologist who spent a decent amount of time with me at some odd hour (he's stellar about accessibility) describing what he called pharmacology. I interrupted him at some point and asked him whether he was making decisions via a dart board, and he burst out laughing. I have a dart board, he replied, but it's got the President's face on it.

Reader, I love the Nice Neurologist.

What we decided on was to lower the Onfi by quite a bit and keep the Depakote and cannabis medicine the same. The science behind that (coupled with some intuition and guesswork, I'm certain) is that the cannabis and the Depakote push up the levels of the Onfi, rendering Sophie way too sleepy and weak. So "lowering" the Onfi is really not "lowering," technically, even though the number on the syringe says so. Sigh.

That's what we've done this week, and it seems to be working in that Sophie is awake, alert, able to go to her day program and have fewer seizures. I'm convinced that we need to get Sophie fully off the Onfi and let the cannabis really do its work. Perhaps the addition of Depakote will enable this to happen.

And speaking of cannabis, I read this week that former house speaker John Boehner (who is on the board of Acreage Holdings, a marijuana investment company) has been making an online infomercial pitch for the cannabis industry. "This is one of the most exciting opportunities you'll ever be part of," Mr. Boehner says in an endlessly streaming video for the National Institute for Cannabis Investors. "Frankly we can help you make a potential fortune."

Mr. Boehner stands to reap about $20 million dollars from his partnership with Acreage Holdings.

How nice for you, Mr. Boehner.

Some of you might remember that I wrote an open letter to the man last year when this story first broke. Since it's heated up again, I hope you'll re-read and share it with anyone in your circles who might get it to the former Speaker himself.

Here's the link.

Monday, May 27, 2019

Pick Your Poison



This might be a record for my not blogging -- more than a week since I've bloviated about the various goings-on in my life and not for lack of them. Perhaps I don't feel like talking anymore about how Sophie has been struggling, how the CBD and the benzo and the sleep aid don't seem to be doing the trick, how I don't know really know what the trick is, anyway, but what I do know is that how many seizures is a relative thing, the counting of them, that is. A relative thing. Not something related to something else but rather relative in comparison. I scroll through my social media and between the kids dying (yes, dying) and the regular shit that is Terrible America, Sophie's three to five seizures (big ones) a day (yes, everyday) don't seem too bad. They're everyday or every day. If someone (Sophie) has anywhere from three to five seizures (big ones) a day, is anything working at all? Anyway? I have a friend who keeps meticulous counts of her son's seizures and is able to track, exactly, what affects them. He had seven in February, she might note, and after we increased his CBDa, only three in March. She agonizes over three, I think three! (Imagine three!) And I continue to draw up the syringes of benzo, syringes of CBD oil and CBDa oil (plunged into her mouth) capsules of sleep aid that I toss in there (her mouth) and the cup, quick, to her lips.

Swallow. 

So. The Nice Neurologist suggested we try either Depakote or Lamictal. They're very good drugs, he said. Has she been on them? He asked. I said, Oh, yes. She's been on both. The Depakote in 1995, when she was six months old, diagnosed for three months, drug number three. And it didn't work, so we took it right off and tried the infantile ketogenic diet next (plucked smack dab out of People Magazine, check it out), and then phenobarbitol and then vigabatrin, and should I go on? The Nice Neurologist said, Oh, and Lamictal? I said, Yes. Lamictal for about seven years. And it never worked.

Reader, I know you wonder why? and your why is why would you give a drug to your daughter for seven years if it didn't work? And I honestly don't have a sensible reason to give you, other than The Neurologist At The Time not having any other options and perhaps Laziness and perhaps because of The Difficulty of Weaning or perhaps The Odd Chance (A Neurologist would have suggested this one) that the drug (Lamictal) was keeping her to only two hundred seizures a day instead of five hundred seizures because -- it's coming -- it's relative.

Let's make a long story short. Let's make a deal. I picked Depakote. The reasoning: it's been nearly 25 years (!). We gave it to Sophie last Wednesday night and again on Thursday morning, Thursday night and Friday morning. She slept all day on Thursday, woke briefly for breakfast on Friday morning and slept all day Friday. She could not be roused for the entire day on Friday and had an alarming amount of congestion above her chest and below her mouth (in her throat) which was probably increased secretions. She could not be roused. The Nice Neurologist relayed through his nurse that we should stop the Depakote and talk tomorrow (Saturday), so while I generally worry about Sophie dying at least once a day, I worried all day, every moment, actually, even though relatively speaking, I am not scared of death.

Sophie had no seizures during this period, but, to be fair, she was practically comatose. Being seizure-free, I have found, involves a trade-off, and this is where the relative part comes in.

I and the Nice Neurologist had several short (not sweet) conversations over the next two days regarding what to do. What to do about Sophie? I think she'll need a smaller dose, he suggested, and I pointed out that the pills he'd prescribed have no score so they can't be cut in half. The liquid form! he said, and I'll call it in! I was walking down the street with Sophie in her wheelchair. She woke from her comatose state on Sunday, bright-eyed but batty, agitated, the drug clearing her system. I imagined a brain cleared of chaos and cobwebs but unsure how to proceed without either. I'm excited! The Nice Neurologist said. I said, Excited? and he said, It doesn't take much to excite me! and I thought, excitement is relative.

I picked a poison. Now let's see what happens.

Sunday, May 19, 2019

We Can Control Ourselves*

Revolutionary (Angela Davis) 1972, Wadsworth Jarrell at Soul of a Nation
The Broad Museum, Los Angeles


To understand how any society functions you must understand the relationship between the men and the women.
Angela Davis 

It's a rainy Sunday morning in Los Angeles, and I'm listening to Erik Satie because it goes well with rain, with melancholy and gentleness. Last night, Carl and I went out with our friends Jason and Leah. Jason is the co-host of our podcast Who Lives Like This?! and given the intimate conversations we've had together and with the wide array of guests on the show, I feel as if I have known him and his wife for far longer than two years. We met downtown at the Broad Museum to see Soul of a Nation, the work of 60 artists that explores "the historical and cultural influences that define their unique approaches to Black art both as a vehicle for change and an expression of self-exploration." (Artnet.com) It was a thrilling exhibit with a wealth of female artists, most of whom were new to me.

Carolyn Mims Lawrence, Black Children Keep Your Spirits Free




What a weird week of near paralyzing stupidity from the southern states and the Republican party and the religious right. I'm repelled, for once, by the snark of memes, by jokes and satire, my ordinary easy and dogged sense of humor replaced by rage. There's no hilarity in cruelty and oppression, in the stripping of women's rights, in the muscle of the white patriarchy and gross subversion of what it means to honor and protect life. Oliver donated to a woman's reproductive health clinic, unprompted by me. Henry said that he was thinking of volunteering as an escort at a health clinic, but he was afraid he wouldn't be able to control his own anger.

The word channel. Channel your anger, I told him, even as I have to channel my own.





Donate HERE.















* I imagine I have readers who agree with what's going on, and I have no conciliatory words for you. The following words are from an ultrasound technologist, though, a confirmed source -- perhaps you will be moved in your tiny minds.
Abortion issues
So here’s the thing:
This Alabama abortion ban is a big deal, in a very bad way. Ohio, Missouri, Georgia, Mississippi, Arkansas, Kentucky… I’m looking at you too, but we’re going to focus on Alabama. If you’ve been living under a rock, let me catch you up. Alabama Governor Kay Ivey just signed a total abortion ban into law, the most restrictive law in the United States. The law will ban abortion at every stage of pregnancy for every reason.
This is not OK, not reasonable, and definitely not acceptable.
If you don’t know me well, maybe you don’t know what I do for a living. I’m an ultrasound technologist. My colleagues and I look at babies in every stage of pregnancy every day. I also work in a high risk unit. My unit and I look at babies and mothers in varying states of mental and physical health. If you think an abortion ban sounds good, then I am a good person to ask about why it isn’t.
So, let me tell you:
• About the woman whose baby developed with no skull, and the brain just floating around. Her baby still had a heartbeat, and she would not be able to access abortion.
• About the woman whose baby has a rare chromosomal condition called T13. Her baby’s organs grew outside its body, and had a cleft palate so bad that there was no nose. She would not be able to access abortion.
• About the woman whose blood pressure is spiking so high that she passes out and is likely to stroke out before her baby is born. She would not be able to access abortion.
• About the woman with such a severe form of hemophilia that giving birth will probably be fatal to both her and the baby. She would not be able to access abortion.
• About the 13-year-old whose school isn’t allowed to teach her science-based sex-education, so she didn’t know how to prevent pregnancy or STIs, but whose body is not developed enough to carry to term without being damaged. She would not be able to access abortion.
• About the woman who was raped by a "friend" who wanted to “make sure she got home safely.” She would not be able to access abortion.
• About the woman who has PCOS, so only has periods every 3-4 months and can’t find a birth control that works for her. She would not be able to access abortion.
• About the woman whose abusive partner removed the condom without telling her (it’s called stealthing, and it happens more frequently than you’d think). She would not be able to access abortion.
• About the woman with the cornual ectopic pregnancy that isn’t reliably in the uterus, and could grow to a size that will kill her. She would not be able to access abortion.
• About the woman who has two kids she can barely feed already, and whose birth control just increased in price. She would not be able to access abortion.
• About the 18-year-old who just started college and is going to be the first graduate of the family if she can just stay in school. She would not be able to access abortion.
• About the woman whose IUD slipped slightly, and is now endangering both her and the pregnancy it was designed to prevent. She would not be able to access abortion.
• About the many, many, many women who just don’t want to be pregnant for reasons that are their own. Health issues, abusive relationships, financial issues, social issues. They would not be able to access abortion.
Some of these might sound like reasonable exceptions to you. And you would be correct. But no one should get to decide what happens with another person’s body, not even to save a life. You need written permission from a corpse before life-saving organs can be taken from them. You cannot be forced to donate blood, no matter how dire the situation. And no one else should get to decide what a woman does with her body -- end of story.
But it’s not the end of the story, is it? Because here’s the kicker: If you consider abortion to be a murder (and some people genuinely believe that!) then miscarriage can be second degree murder. And this is already happening all over the world -- El Salvador, Ecuador, and the U.S. Women are being jailed for miscarriages and stillbirths because they "might have done something to cause it." If you start down this path of jailing women and doctors for making healthcare decisions that affect no one but themselves, then you get women who don’t go to a doctor for a safe procedure, and instead order pills online or use whatever metal instruments they can find to end their own pregnancies. Women who are honestly experiencing a miscarriage (which is medically called a "spontaneous abortion," just FYI) will not go to their doctor for help. They will bleed out on their bathroom floors or die of septic shock. And I haven’t even talked about how this will disproportionately affect women of color, LGBTQA+ women, or trans men. This isn’t about the “sanctity of life” anymore. It’s about controlling women.
We can control ourselves.

Thursday, May 16, 2019

Microchimerism

Chimera by Gustave Moreau
1867


I'm not sure what it means to be resilient, but when I emerge into light it has seemingly been without effort and I'm hard put to explain why, exactly, I feel better and why, exactly, things were so hard. The word grace. 





I had a dream the other night (oh no, please no) that I was sitting on a toilet and shit, crap, you know (I have a hard time writing the words) kept coming out of me. It just kept coming. If that's too much information (TMI) for you to stomach (no pun intended), it wasn't in real life. There's something about the body, about bodily functions, or there's something about the body (!) that's difficult to express. When I write about the body, from my body, I am claiming it. How extraordinary that words lie in the tips of the fingers tapped out on the screen.




There's something about the body, bodily functions. There are those who would control my body (and yours) and those who have controlled your body (and ours). 




I've had people ask me whether I would have had an abortion if I'd known Sophie would develop seizures and have developmental disabilities.


!




I've learned to live with questions (the question).



?




The Chimera from Greek mythology was part serpent, part lion and part goat. Chimerism is the mixing of cells from genetically distinct individuals.


 Microchimerism is the persistent presence of a few genetically distinct cells in an organism. This was first noticed in humans many years ago when cells containing the male "Y" chromosome were found circulating in the blood of women after pregnancy. (Scientific American)


Some males (and females) will grow up to be men who wish to control our (female) bodies.



Micro-chimeric cells are not only found circulating in the blood, they are also embedded in the brain. I've carried and grown three beings in my body. They live in me, still.




A thing that is hoped or wished for, but in fact is illusory and impossible to achieve (chimera)






Sunday, May 12, 2019

Weekend Recap



It was a whirlwind of a weekend. Oliver celebrated his 18th birthday. I made a cheesecake, as per his request. It called for 3 1/2 pounds of cream cheese, 5 eggs, 2 cups of sugar and 8 ounces of sour cream. He also asked for Chick fil A for dinner. I know we're not supposed to frequent the food of a company that discriminates against homosexuals, but we sinned.


Child number two arrived home from college for the summer. The house was quite literally transformed in a matter of minutes into the style that we (Oliver, Sophie and I) had forgotten about which one could call laissez faire or perhaps une porcherie. Will we ever see underneath that stuff on his bed? Never mind, as we're glad to have him home.

The almighty Blue Shield of California gave us their "approval" that Sophie receive her IVIG treatments, so she spent much of the days hooked up to an IV. We are coming up for air as well with Saint Mirtha out with a shoulder injury and a new helper, Maria, on board. Maria appears to be headed for sainthood as well -- she's even painted Sophie's fingers and toes in the most beautiful pink. I am grateful for these caregivers. I am beyond grateful, to tell you the truth. They save me.

I woke on Mother's Day in a kind of funk, I guess. Other than honoring my own mother on the special day, I think it's sort of a fake holiday -- well, not sort of -- and I struggle with all the expectations and concomitant resentments every year no matter how much I set my mind against it. Both boys slept in to nearly noon, but they gave me sweet and thoughtful gifts, and Carl went out and bought me a croissant. My sister sent me a lovely card with the most beautiful note in it. I cried, which I guess is appropriate for a weeping willow. Here's the video I made of it:





I also went on a short but steep hike in the Hollywood hills this afternoon with Carl and Oliver. The mustard is just turning from yellow to yellow-green, and the hills are still green from the spring rains, the city skyline lay off in a light hazy distance, Painted Ladies fluttered on every bush and hawks soared above us in the blue sky. I needed to get out and move my body in some way other than up and down the hallway and lifting Sophie, but about halfway up the peak, I started to feel dizzy from the sun and the exertion and my chronic inability to drink enough water, so we walked back down. I need to get back to doing more exercise that is unrelated to caregiving -- I am on the proverbial edge, both mentally and physically, I think. Lord knows why I've remained so healthy for so long despite the stress of it all, but I've got to stop taking it all for granted. With Saint Mirtha down, I am struck by what might transpire should I go down, and it ain't pretty, if I do say so myself.

I'm not going to talk about all the articles I read about the southern states passing these laws against women's right to have abortions, to govern their bodies, to ensure their reproductive freedom.

I'm not going to talk about it.

I'm not going to talk about it.





These people hate women.








Before I forget, I thought I'd post a hilarious exchange I had with one of my closest friends via text. She's in gray and I'm in blue. I hope you enjoy it as much as I did. For clarification, Nonfiction is a new French movie, and the Arclight is a movie theater in my neighborhood.






Humor is everything to me on most days, so if you want to know what "you can do" or what "you can say," tell me something funny. And for god's sake, MEN, step up and help us to fight back with this anti-women, anti-choice clusterf*^kery.

Friday, May 10, 2019

Oliver is Eighteen Years Old



I don't even have anything to write about this kid of mine that I haven't written already.

He's an amazing son, and I love him.

Happy Birthday, Big O.










Tuesday, May 7, 2019

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.



Saturday, May 4, 2019

Late Afternoon Saturday Conversation Between a Man and a Woman Lying on a Bed*



Woman:

Listen to this. JFK during his presidential campaign wouldn't let Sammy Davis Jr. near him because he had married a white woman and he didn't want the southern segregationists to be offended.  Then later, Sammy Davis Jr. switched parties with Sinatra and embraced Nixon -- can you believe that? Literally hugged him.

Man:

I was never into Sinatra. F*^k Sinatra.

Woman:

I know, but Sammy Davis? 

Man:

F*&k Sammy Davis.

Woman:

Did you hear that in Florida, teachers can be armed inside of elementary schools?

Man:

F*^K Florida.

Woman:

My God. This story about Kelly joining the board of the company that runs those facilities that house unaccompanied minors -- the migrant children thing -- did you hear about that? 

Man:

F*^k John Kelly.

Woman:

I think I'm going to be sick. These might as well be concentration camps! The biggest one is in Florida! They've received and will continue to receive hundreds of millions of dollars in federal contracts! It's taxpayer money! My god! It's like a concentration camp! 200 beds in a room to house the older teenagers! The workers claim that the kids think of it as a "slumber party!" What is this? What is wrong with these people? What is wrong with Kelly?

Man:

F*^ Kelly. F*^k Florida.

Woman:

What is wrong with this country? Between that evil guy from INSYS found guilty for racketeering in the opioid case  -- the same company that derided me and my colleagues at an epilepsy event when we participated on a panel about cannabis medicine -- the same company that is busy pushing opioids and developing a pharmaceutical grade CBD -- and yesterday's 2-hour unsuccessful battle I had with Blue Shield of CA who's decided to deny coverage of Sophie's IVIG until further"review" -- well, my god. 

Man:

Take notes. Write about it.








* The man quoted in this post is the kind of man who almost never uses curse words. The woman quoted consistently rants and raves, peppering her language frequently in those rants with curses.

Thursday, May 2, 2019

Things That Made Me Cry in My Mind, 5/1/19


  1. Kamala Harris grilling Barr (so much money and time literally wasted on these hideous people running the country even as we watch it burn, drown and fall)
  2. The briefing filed by the Trump administration calling for the complete and total dismantlement of the Affordable Care Act (anxiety, again)
  3. The story of the young man in North Carolina who charged the shooter and tackled him and was killed, the photo of him and his impossible life, interrupted by training on how to do such a thing and ended by doing such a thing (disbelief that people think owning guns ensures their safety and freedom)
  4. The man in Georgia who lured a teenaged girl off a website for girls with eating disorders to come live with him, engaged her in brutal sex acts and kept her in a cage for some of that time but will not serve any prison time because of the eight months he spent in a detention center prior to sentencing
  5. The New York man who was sentenced to probation only for raping a 14 year old girl he met while driving a school bus, who, according to the judge, only raped one girl, rather than multiple
  6. People close to me who recently made statements supporting the racist POSPOTUS who is also a sexual predator  and who also would take away the very thing that enables my family to live somewhat more comfortably with Sophie's epilepsy (the tears were real)
  7. The article about retail botox centers where you can get injectables as conveniently as hair blow-outs

Reader, I imagine you'd rather see a list of things that make one grateful. 

  1. The fluke of a blue whale, seen yesterday from a boat just off the shore of Newport Beach (the tears were real) 


Wednesday, May 1, 2019

Thinking About Things, Things About Thinking

Homemade gift from Lauren, Sophie's aide


This morning I was in my Barbie bathroom brushing my teeth with my Goby toothbrush (it says, Get Your Buzz On and came in a pink-lined fancy box with free shipping on automatic head replacements every three months) and I was thinking about how absurd it all is, living paycheck to paycheck, the products we buy (I say we meaning we Americans, we consumers, we capitalists, and if that's not you go with me for a moment) how lazy we are, how complacent -- even in the face of calamity. Calamity being the personal as well as the communal. Towelettes to wipe your privates are folded neatly in foil packets with pictures of flowers, small ones for on the go and larger ones. Summers Eve replaced by a more politically correct plain cream box with simple black lettering Body Cloth. Convenience. Attachment. The word straw. Drawing straws, disposing straws, straws showing up in just one damn turtle, someone said. Gimme a break. I'm thinking about equanimity, about holding two opposing thoughts or feelings or states of being at once without losing your shit, losing your mind. I'm thinking about calm and I'm thinking about action, how caring for Sophie for so long, so long has honed my mind my capacities my equanimity to a point so sharp it pierces through thick the veil protecting all of it my heart. We can be calm. We can still act. We can still be calm. We can act.

Tuesday, April 30, 2019

"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






Sunday, April 21, 2019

"the green of Jesus"



Today is Easter.

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

Lucille Clifton


Happy Easter to you.

Wednesday, April 17, 2019

Deli Healthcare and My 911 List



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. 





What do you think?




Sunday, April 14, 2019

Sunday Greetings from the Church of the Batshit Crazy*



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 mostly not 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.












* My church is a west coast satellite of beloved Reverend Mary Moon

Wednesday, April 10, 2019

Black Holes and Superblooms



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.



Monday, April 8, 2019

Spring




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

Saturday, March 30, 2019

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

Sunday, March 24, 2019

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.


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