Monday, May 27, 2019
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.
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
|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.
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.
* 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.
Thursday, May 16, 2019
|Chimera by Gustave Moreau|
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
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
Tuesday, May 7, 2019
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
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.
I was never into Sinatra. F*^k Sinatra.
I know, but Sammy Davis?
F*&k Sammy Davis.
Did you hear that in Florida, teachers can be armed inside of elementary schools?
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?
F*^k John Kelly.
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?
F*^ Kelly. F*^k Florida.
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.
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
- 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)
- The briefing filed by the Trump administration calling for the complete and total dismantlement of the Affordable Care Act (anxiety, again)
- 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)
- 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
- 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
- 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)
- 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.
- 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
|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.