Thursday, June 27, 2019
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:
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…
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.
Saturday, June 22, 2019
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.
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
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.
Thursday, June 13, 2019
|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
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.
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?
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
|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.