Apotropaic Devices: I Will LIft Up My Skirt

 

Tonight I watched a recording of a lecture titled "The Vulva's Pilgrimage: Understanding Medieval Genitalia Badges." I bought a ticket to hear this lecture from The London Drawing Group, so in lieu of listening live at some ungodly hour, I received the recorded version and watched it tonight after dinner. The pandemic has made possible a number of things for me, and, no, I'm not going mad. While I've begun a number of crafts and even dabbled in art for the first time in my life, I'm not yet casting vulvas. Yet might be an operative word there. 

Continue reading here.

Dysfunctional Resilience

 Last night I was reading in bed and I heard a crackling sound and then again a rustle and I thought it might be Sophie but I didn't feel like getting out of bed so I kept reading (Homeland Elegies) but that was it, the guilt was creeping in and then I heard coughing a tiny cough a choke, really, so I lay the book down and got out of bed and walked down the hall the short hall and into the darkness of the room where the lady lay the princess lay gurgling. I don't know how to write anymore and remember writing these tales before when I used commas and semi-colons and short muscular verbs. Now it's all run-ons and no punctuation and stream of thought because after nine months of being at home and teaching on Zoom and doing all the usual things with Sophie like marveling at her hair and feeling her grace and changing her diapers and managing her medication and arguing with her insurance company and paying Nice Neurologist to write me scrips and listen to my suggestions for what we should do next, well, there's no other way to get it all down. I flipped on the light and Sophie's lips were dark were they blue? was she breathing? had she had a seizure? where's the pulse-ox? Let's make a long story short (the requisite shall we?). Sophie is ok so no worries all is well thank god (where is god?) and I sat up with her all night, you see, because I knew in that moment that had I not gone into her room at that exact moment she might have died. It feels good to type that out here in the public space that is this old blog for you dear Reader some of you well over a decade. I just knew in my bones that this is how it will happen but that it did not happen not happen last night. I sat up all night and then I fell asleep and woke with a start at ten til nine and Sophie was still sleeping Sleeping Beauty right next to me her lips red red rosed. I had to teach at 9:30 on the Zoom and one of the Marias was coming at 9:00 so I got up from the bower where we lay and made coffee and opened the door to one of the Marias who would be taking over for me. Where was I? My friend Noa from days gone by calls this all of this dysfunctional resilience and I call it a tale, a happily ever after, thickets of thorns and brambles and words and thankfulness to be alive, even now with no punctuation.

What it's like to be afraid

What's it like to face death every night? you ask. What exactly is it like I ask myself. Tonight. Every night, almost. Every time Sophie has a seizure. Every morning when I go to her room that short walk down the hallway to her room. Will she stop breathing in the interval between my comforting my attendance and my stance at the sink rinsing the syringe clear of the syrup (poison) I've shot into her day night day night day night day night day night day night day night day night. Will she have stopped breathing in the night and lie warm or cold in her bed? This is not morbid. I am not a soldier. The things I carry. What's it like to face death every night? you ask. What exactly is it like? I ask myself. I am not a soldier. I carry nothing but a syringe, a couple of pink pills, a white capsule, a cup of juice diluted with water. No arms but my own. I am not a soldier Sophie is not a warrior and this is not a battle. What's it like to face death every night? you ask (you have never asked). It's a song may the long time sun her gray face turned pink shine upon you my finger at her wrist all love her pulse furious surround you my hand at her brow and the pure light it's okay it's okay within you over and over guide your way on. It's the water rushing through the syringe at the sink afterward my head tilted. I am not a soldier Sophie is not a warrior and this is not a battle. I'm thinking not of crosshairs my perspective is the narrow tunnel of the hall the bed at the end and her small form. Focus.

Don't forget I'm moving to Substack.

Pandemic Darts

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





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

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

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

to Chris Rice

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

I miss Henry.

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

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

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

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


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

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

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

A Whole Lot of Shakin' Going On

Reader, we are fine so far after two of the biggest earthquakes we've felt in the twenty years I've lived here. Last night I went outside a bit after dinner and stood in the front yard looking up at the sky. It was a beautiful night, a typical glorious southern California clearness to the air and the temperature, and I noted how quiet it was -- no sirens, no voices, no birds. No birds.

I do not like earthquakes. I do not find them exciting, particularly when they happen really close to one another. I do find them similar, in some ways, to living with a person who has uncontrolled seizures. That means that I never get used to them. They come out of nowhere, cause the same burst of cortisol (or is it adrenaline), and one makes you feel nauseous and like you can't trust the ground under your feet while the other makes you feel nauseous and like you can't trust -- well -- anything. So, I generally practice being mindful, or at least try to be mindful even as I dissociate a bit during Sophie's seizures and marvel/wonder/holy shit! during earthquakes. But we're fine, honestly -- taking stock of emergency supplies, wondering if the 30 gallon container of water in the backyard shed is still good and whether I should go ahead and pack a "to go" bag specifically for Sophie and her meds.

Those meds control Sophie's seizures about as well as preparing for an earthquake controls my nerves. We could stretch out that metaphor to say that all is vanity and there's nothing new under the sun.

I read something the other day about the importance of a belief system -- higher power, etc. etc.  to allay anxiety. I remember feeling somewhat faithful in my Catholic childhood and early adulthood, was obsessed, briefly, with the lives of the saints and even went to a Billy Graham revival with my Bible beater college friends, but when I look back and read back (lots of religious agonizing in the journals), from this vantage point of general/relative unbelief in any higher power other than the universe itself and, of course,  love, love love, I'm struck by how I labored to believe and how the whole religious thing banks on the myth that it takes labor to believe, to love, to have faith, etc.

which

leads

me

to those I've engaged with over the last few days who argue semantics (the term concentration camp) and wave their silly flags and insist on the rule of law and God and Jesus and prayers and then exclaim should we just let them WALK over the border, then? and bite into their charbroiled burgers and slide some mustard over their hotdogs and watch some hulked up millionaire swing a bat at a ball as American as pie.

Speaking of pie, The Gig Economy Worker made seven peach pies this week and is taking orders for the rest of the summer.

(I picked those donut peaches from a friend's tree, a tree that had a ridiculous number of peaches and bowed branches, so heavy was its fruit. Alas, the taste was not as sweet and generous as the number, so I used very ripe, very delicious peaches from Trader Joe's)

The 4th of July in Terrible America

Children and workers are seen at a tent encampment recently built near the Tornillo Port of Entry on June 19, 2018 in Tornillo, Texas.

 Getty Images

I was sitting at my computer, paying my American Express bill and waiting for a peach pie to finish baking in the oven when what was the biggest earthquake I have felt in several years began. It started as a jolt and then it grew in waves even as I glanced up and saw the chandelier swaying and heard the pots clinking on the pot rack that hangs over the stove. I willed myself not to panic and walked toward Sophie's room, the hallway a galley in a boat swaying back and forth. I nearly put my arms out on either side to keep my balance and when I passed the boys' room, I shouted to Oliver, Earthquake! and sat next to Sophie who was lying in bed, her eyes open, my stomach lurching the pots clinking and windows creaking. It seemed to go on forever and then it stopped. Everyone is fine. We are all fine. Sophie, who had a ridiculous number of huge seizures yesterday out of the blue, as she'd been doing so well, is fine. I know that she had those seizures now because she is exquisitely tuned in to the strange and elemental goings on in the universe. I imagine she feels relief now, her brain settled even as we settle. It seems like relief, now, after the simmering rage and unease I've felt for days, a rage that I attributed to what's going on, the unease to the imperative to celebrate, to wish happy fourth of July when so many are suffering, when tanks are being power-washed to shine at military parades for that POSPOTUS, the empty rapist in chief of Terrible America. Yes, my words are harsh, but isn't it true? And what can we do beyond cutting our pie crusts out with END THE CAMPS letters scattered over caramelized peaches? How can our voices be anything but tiny and inexhaustible (Faulkner)? I just can't wish anyone happy anything this 4th of July. I feel angry and ashamed to be an American, to be so ineffectual, to be able to do nothing but post horrible photos and satirical cartoons about the POS we have leading us and the incredible injustices that he and those who support him, those we know, those, even, we love, are doing in our name. It makes me so sick to my stomach that the very real earthquake that rocked our house was a kind of relief.

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.

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

Hyperbole and Cliche on the Eve Eve Eve of Thanksgiving

Yes, that's white flour you see in the basket, and it's bleached white flour and it's self-rising white flour. I'm fixing (like my Tennessee friends say) to make about ten dozen southern biscuits. Angel Biscuits. Our beloved Mary Moon provided me with a recipe. I'm also baking about ten thousand apple pies and about five thousand pumpkin cheesecakes. Hyperbole is the rule today. The apple pie is a pretty standard recipe that I've made a bazillion times, and the pumpkin cheesecake, the same. I've found that slicing the apples very thin -- like about 1/4 inch -- is the trick to ensure that the pie doesn't become a mushy mess, although mushy messes have their charms. You let the slices macerate in some lemon juice, brown sugar, white sugar, cinnamon and salt first, and then you drain them and boil down the juices into a thick syrup that you then add cornstarch to and toss with the apples before adding them to the pie. You know the rest. The pumpkin cheesecake is a tad time-consuming and after being cooked must chill overnight in its springform pan before being un-molded, and the only trick I have for it is to use really good cream cheese because the cheap kind of cream cheese sometimes has a lot of water in it (kind of like cheap butter) so it's better to use the good stuff, if and when you can. Despite making ten thousand things, I remain a bit of a snob when it comes to baking and pastry. If you're a new reader, in another life I worked in fancy-schmancy kitchens in New York City under asshole chefs and learned all the finer things in pastry, before being thrust into the cruel world of childhood epilepsy when my infant daughter was diagnosed with it and so began The Seizure World which might be sort of like The Matrix (I have a limited understanding of the movie as I am decidedly not a fan of sci-fi) in that it's kind of a simulacrum of the world as most know it where tiny little mother minds™ are trapped and enslaved. Wait. That's the real world, too, isn't it?

Anyway.

Hyperbole aside, I have a hell of a lot of biscuits, apple pies and pumpkin cheesecakes to make over the next few days for my cottage business, Everyone Needs Cake.™ Because of that I have decided not to make Thanksgiving dinner this year, and both my sons (Henry comes home tomorrow night!), The Bird Photographer and I will be feeding the homeless on Skid Row Thanksgiving morning. Then we'll return home and eat pizza and pie.  It's just as well (it's also cliche day, apparently). We have much to be thankful for, and it isn't the origins of the country, to tell you the truth. Or the Pilgrims that set the tone for the rest of history, either.

It's just impossible

Seizure days. ESES days. How do we get through them? Still, I have no idea. Still. Still! What would it look like to get through them? Is there some sort of chant for it, a manifestation? How does Buddhism work when your daughter has a bad seizure day?  It's just impossible, my friend Jody once said about her own situation, and I think about that often. It's just impossible. I think about Paloma and Calvin and Michael and Robert and Zaki and Charlotte and FlyBoy and Sophia and William and Emily and -- well -- all of them. It's impossible.

Listen. We had Dr. Bonni Goldstein on the Who Lives Like This?! podcast this week! She educates everyone about the endocannabinoid system and how cannabis medicine can right the balance for so many disorders. She talks about caregiving for caregivers, but her advice is really for anyone who wants to learn about how imbalances in the endocannabinoid system can manifest as disease or insomnia or anxiety or depression, etc. She has advice and suggestions. Check it out here. You can listen right from the blog post or from iTunes directly.

My Response to The NY Times Epilepsy Story

So many people sent me the recent — let’s call it crowd-sourcing — article detailing a young girl’s hideous epilepsy story and asking for the public’s help, that I’ve lost count. That we live in a period where literally everything is a reality show makes me ill. Crowd-sourcing medicine? Give me a break. This is my response to the parents via the New York Times and the f’d-up medical business community that pretends to Science:

Don’t cut out your child’s brain until you’ve tried cannabis medicine. “Fixing” your child is the hardest, most fruitless journey you will embark upon. The opposite of that is not acceptance. There is healing in the legion of people who know your suffering. Healing and curing are entirely different things.

You can only lose what you cling to

La Jolla, CA 1996

The thought crossed my mind the other day that Sophie's epilepsy is a beast, a monster, and she is not her epilepsy, not a beast or a monster and I'm always fighting it and not her. I cannot can't can not accept it push against and never through it over and over and over year after year after year. This is contrary to Buddhist thought. The harder you push against the more you resist the strength of your hate is the measure of the intractability against which you push resist and hate. I just can't do it.

What do the religious say? Something from Ephesians, I think. Something about now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us.  Of course, there's that power which is a Him, capital H, I wager, or God.

We are all asked to do more than we can do.

We are all given way more than we can handle, saith I.

The Limitations of the Tiny Little Mother Mind™ and #SeezJahBoy

It's a big world.

That's what I tell myself when I read about or hear about things that are otherwise incomprehensible. It's a big world, I thought when I read about plushies in a Vanity Fair magazine in the last millennium. It's a big world, I thought when I actually ran into a plushy convention at a resort hotel in Orlando where I was attending a children's healthcare convention. It's a big world, I thought, when people started talking about reality shows and women being famous for being famous,  It's a big world, I thought when Arnold Schwarzenegger was governor of California, and it's a big world, I thought, when certain celebrities insured their famous asses, literally. It's a big world, I think, when people get all geared up for the season of bashing brains into dementia, otherwise known as football. It's a big world, I thought when people -- some of whom I actually know and love -- voted for and continued to support Donald Trump, even after he imitated and mocked a disabled man and bragged about his prowess grabbing women's pussies. That one was a stretch, to tell you the truth.

A lot of people are excited about last night's Miss America pageant -- how Miss Michigan, a blonde Barbie doll, made a comment about the bad water in her home state and appears "woke" in the newest sense of the word, and Miss New York, a black Barbie doll, won the prize. It's a big world, I'm thinking, wondering how in 2018 we still have beauty pageants (although I've read they're no longer "beauty" pageants, and there's no more bathing suit competition). What's that expression? Whatever floats your boat?

Anywho.*

My tiny little mother mind™ was seriously taxed today when I learned that Netflix released some movie called The After Party that's getting all the raves. Evidently, the main character has a seizure (after smoking marijuana) while rapping on stage, projectile vomits and falls to the ground writhing. The moment is captured on video, it goes viral, he's called "Seizure Boy," and soon everyone is doing the #SeezJahBoy dance.

This is comedy.

Sigh.

Where do we start? The young man who plays the character is an up and coming rapper and has a bazillion followers on Instagram. He sees himself, ironically, as a bullying advocate. People with epilepsy are commonly bullied. This is a fact. I know countless people whose children have been bullied, have been mocked and derided when they've had a seizure in school. The stigma of epilepsy is still so strong that adults with epilepsy often don't tell their employers that they have it. Teenagers with epilepsy are often at higher risk for anxiety and depression, and much of that can be attributed to our culture's ignorance of the disease.

So, yeah, back to #SeezJahBoy. Despite condemnation from different news sources and epilepsy and seizure awareness foundations, the hashtag is viral at this point. I have heard from good friends in the epilepsy community that when people go in to these conversations on Twitter and Facebook, in an attempt to counter the ignorance, they are being called trolls or "racists" (because the movie is predominantly by black people). How many people did this show have to go through to get put on the air? Are we overly sensitive as parents of children with epilepsy or individuals with epilepsy? Do I think the show should be pulled? To tell you the truth, this sort of thing so taxes my tiny little mother mind that I think nothing at all. I don't have the energy to think about some stupid movie that makes a mockery of people with epilepsy. I don't give a fuck about the writers, the editors, the sound people, the young actors and wannabes that made this movie. There is no big world that holds such shit. The big world shrinks in to a dot, and that dot is a portal to my house where my epileptic daughter sits in her wheelchair, the little vein in her forearm penetrated by a needle that brings an infusion of antibodies to her brain, so many antibodies that they literally flood her brain and dilute out the bad antibodies that have been wreaking havoc, causing her to seize, near constantly, in her sleep and subsequently destroying her ability to walk and eat and move in the world.

Dance on, #SeezJahBoy people.

The world is ugly,
And the people are sad.

Wallace Stevens, Gubbinal


















*New Readers should know that I hate this expression and only use it facetiously.

Sophie B. vs The Great American Healthcare System, Part 1,000,000, ROUND 1

July 4, 2018
Ambulatory EEG

Let's make this a series.

ROUND ONE TIMELINE:


July 3, 2018

Sophie B. (Plaintiff) was "hooked up" to an ambulatory EEG in Neurologist's office.  Plaintiff went home with hook-up and video camera for overnight observation of brainwave activity.

July 4, 2018

Mother/Conservator Elizabeth A. removed electrodes from Plaintiff's head and returned "black box" to Neurologist office. Because it was a holiday, Mother/Conservator had no expectation for quick reading. Mother/Conservator reports that after two decades, she has no expectations at all.

August 23, 2018, 3:00 pm

Mother/Conservator picks up Plaintiff from adult day program and notes Plaintiff's difficulty breathing. Day program assistant reports Plaintiff had difficulty eating lunch and swallowing. Plaintiff's lips are slightly dusky in color. During entire ride home in Los Angeles traffic, Mother/Conservator pounds back of Plaintiff and encourages coughing and swallowing. Mother/Conservator contemplates bringing Plaintiff to emergency room but is persuaded by own inner compass and more than two decades of experience that no good will come of entering hospital emergency room. Instead, Mother/Conservator makes another of what has been multiple calls to Neurologist office for nearly two months regarding July 3, 2018 ambulatory EEG reading. Mother/Conservator has heated discussion with nurse at Neurologist's office demanding that she should get the EEG reading, that Plaintiff is suffering, that something is wrong. Neurologist gets on phone, admits that July got away from us and assures Plaintiff (whose tiny little mother mind™ wonders if August got away from them, too?) that EEG will be read that afternoon and that he will call Mother/Conservator that night. See Appendix A.

August 23, 2018 4:00 pm

Mother/Conservator arrives home with Plaintiff and proceeds to remedy problem of excess mucous and choking. She is helped by Caregiver and stabilizeS Plaintiff who falls asleep.

August 23, 2018 8:00 pm

Mother/Conservator receives phone call from Neurologist who expresses shock that Mother/Conservator was "right," that Plaintiff is indeed having recurrence of ESES, a rare epileptic syndrome that Mother/Conservator has suspected Plaintiff of having but has been repeatedly told by several Neurologists over two years that its recurrence is unlikely. Mother/Conservator goes into full dissociative mode while on telephone and intelligently discusses former incidences of ESES, the treatments for said incidences and otherwise directs Neurologist to treatment modality that was successful previously. See Appendix B and Appendix C.

Dissociative mode gives way to extreme distress and mental suffering of Mother/Conservator, attributed to decades of experience dealing with this shit, grief over Plaintiff's ongoing struggle and suffering and anticipation of forthcoming battle to get treatment for Plaintiff. Given experience, strength, history of mindfulness meditation and love and support from immediate family members, Mother/Conservator puts on big girl underwear, girds her loins and otherwise readies herself for the fight.

August 31, 2018

After multiple calls with Neurologist office to "check" on status of IVIG treatment (see Appendices A and B for clarification), Mother/Conservator is directed to Home Health Agency nurse who says that "this is not approved by the FDA as a treatment for epilepsy, so insurance will deny it." Mother/Conservator corrects Home Health Agency Nurse that the treatment is actually FDA-approved but is considered "off-label" for ESES treatment and that she is aware of possible denial. Mother/Conservator informs Nurse that treatment has "worked" for Plaintiff twice before and was partially covered by Insurance Company after some "wrangling." Nurse agrees to "write up" notes as dictated by Mother/Conservator about past history of treatment with IVIG. Nurse tells Mother/Conservator that she will "get back" to her after the holiday.

September 3, 2018 10:00 AM

Home Health Agency Nurse calls Mother/Conservator on telephone while mother is riding in car after dropping Plaintiff off at adult day program. Health Agency Nurse asks whether you might want to be more comfortable at home receiving information. Mother/Conservator tells Home Health Agency Nurse that she is fine using the Bluetooth option on her telephone in the car. Mother/Conservator wonders in her tiny little mother mind™ whether the Health Agency Nurse thinks she might have an accident when she "receives the news." Mother/Conservator finds this humorous and assures Home Health Agency Nurse that she can take it. Health Agency Nurse says that Insurance Company has declined the doctor's prescribed IVIG treatment for Plaintiff for what Mother/Conservator hears as blah, blah, blah, blah, blah. Health Agency Nurse states that an appeal will begin with Neurologist perhaps joining the appeal and personally speaking to Insurance Company chief doctor who has made this decision. Mother/Conservator listens carefully and says indeed. She can't recall whether she said, of course! or is there anything I can do to expedite this process so that my daughter can get treated for her ESES? Her tiny little mother mind™ wonders how many people are employed for this tomfoolery and thinks of some suitable imprecations, directed today toward Supreme Court Justice nominee Kavanaugh who, if confirmed, will most surely make Plaintiff's life and millions of others more miserable, particularly in regards to healthcare. Mother/Conservator doesn't share the inner workings of her tiny little mother mind™but rather reminds Home Health Agency Nurse of Plaintiff's secondary Medi-Cal insurance. Home Health Agency Nurse reports that the Medi-Cal office worker in Home Health Agency will begin to look into Medi-Cal coverage, now that Insurance Company has issued a DENIAL. Mother/Conservator finishes conversation pleasantly by remarking how frustrating this all is for everyone, even though inside she is dying, her tiny little mother mind™ shrunken, her girded loins gaping, her big girl underpants riven.

ROUND ONE:

Sophie B vs. The Great American Healthcare System

WINNER: The Great American Healthcare System
LOSER:    Sophie B.

Appendix A:

Mother/Conservator reports that Neurologist is wonderful in every respect, so while she is frustrated and upset over the delay in the reporting of the EEG results, after more than two decades of dealing with this shit, she is cognizant of Neurologist's time constraints and being stretched too thin. She assures Court that she'd rather deal with a Nice Neurologist Who Works With Her than an Asshole Neurologist, the latter being the norm and with whom she has had plenty of experience. Mother/Conservator also assures the Court that she is well aware of The System and its shortcomings, that she has worked most of her adult life in it and to improve it, that her efforts haven't amounted to much of anything but that she has virtually kept her daughter alive and sometimes thriving in spite of it.

Appendix B:

2005: Parents of Plaintiff (not yet Conservators because Plaintiff is a minor) are given "three choices" of treatment when Plaintiff is diagnosed with rare syndrome ESES (diagnosed only after Mother insists on hospitalization of said Plaintiff, given drastic decline in Plaintiff's physical abilities with no urgency to attend to this decline by Neurologist at time). Choices will be designated "Door Number One, Door Number Two, and Door Number Three" in keeping with Mother's dark, albeit sustaining, sense of humor.

Door Number One: High dosage steroids
Door Number Two: Valium
Door Number Three: Intravenous immunoglobulin (IvIG)

Mother chooses "Door Number Three" and treatment commences in hospital. After some "wrangling," private insurance company agrees to partially pay for ongoing treatments over the next six months in Plaintiff's home. "Wrangling" should be noted as "understatement" as Mother is left depleted and experiences considerable signs of post-traumatic stress syndrome, triggered by repeated "wrangling" in previous decade.

"Door Number Three" treatment of IvIg restores Plaintiff's brainwave activity to previous "normal" dysfunction and Plaintiff recovers.


Appendix C:

2011: Plaintiff has occurrence of ESES and is prescribed "Door Number Three" again, given its success in treating previous incident of ESES. Insurance company denies treatment but is eventually warned down by repeated calls from Mother, one of which includes a threat to hospitalize Plaintiff so that treatment can be initiated in hospital, requiring Insurance Company to pay. Insurance company agrees to pay for treatment, treatment is administered and Plaintiff recovers.

Yet

Henry turned twenty years old yesterday. He, like Oliver, doesn't have much to do with Sophie these days, yet the love is there. It's always been there. Sophie loves Henry so much that I can actually feel it.

I feel like writing off of this today, a day where everything is fraught with symbol.

I read this just now on the Paris Review website, thrilled that the French came easily to me:

Je voudrais vivre pour écrire. Non penser à autre chose qu’à écrire. Je ne prétend [sic] pas l’amour ni l’argent. Je ne veux pas penser, ni construire décemment ma vie. Je veux de la paix: lire, étudier, gagner un peu d’argent pour m’independiser [sic] de ma famille, et écrire.

They were written in 1959, in the diary of 23-year old Argentinean poet Alejandra Pizarnik. 

(I would like to live in order to write. Not to think of anything else other than to write. I am not after love nor money. I don’t want to think nor decently build my life. I want peace: to read, to study, to earn some money so that I become independent from my family, and to write.)

With news of a con-woman in what passes for the literary world these days, I'm staving off cynicism that the whole thing is a racket.  I had an encounter with her some years ago on Facebook. She made derisive comments about those who don't vaccinate their children -- something about morality. I objected and as I so often do after exchanges like that, receded. Wary.

Sophie had two seizures this morning before 6:00 am. Brief, yet. Yet as an operative word because -- you know -- a seizure is a seizure. There's a full moon coming, yet. It's all where you place a word. Yet, we are not supposed to attribute seizures to full moons.

Parenting, No. 785

I went to visit Henry this afternoon at his new job. He's a server at a funky little place in Venice. Maybe I shouldn't use the word funky anymore since very recently, like yesterday, Oliver told me that it was embarrassing. Maybe he didn't use the word embarrassing, but he repeated the word funky in a voice that I guess is mine, at least the voice that both sons use when they imitate me, and while I imagine there's fondness in the teasing, it still takes me by surprise that I'm considered painfully uncool and old. Both brothers have jobs this summer (Oliver actually works nearly full-time all year round, recently opened a Charles Schwab trading account and has bought stocks -- no joke), and I'm very proud of them. It's been a long time since I've included them on the old blog, and just now I was looking for past posts in a kind of nostalgic way, and boy -- some of those posts were damn funny. I sat down at the bar of this little restaurant where Henry works, next to a younger woman who was drinking a glass of wine and eating a salad. Since I'm the chattiest person on the planet and the proudest, most embarrassing mother, I introduced myself to the woman and told her that Henry was my son. She told me that she had a four year old son, and that he was in a challenging stage. I told her that I remember well those challenging stages, but I found those times to be more physically challenging and the teenaged and young adult years more emotionally challenging. I didn't tell her this story, but Reader, I 'll tell you. Just the other night, we were sitting at the table eating dinner -- takeout Vietnamese because making dinner in the summer is just not my thing -- and the usual conversation between The Brothers began, and this entailed arguing about whether LeBron James or Michael Jordan was the greatest basketball player of all time and then something about the baseball player Mike Trout and Teslas and Elon Musk and then you're an idiot and you're an asshole and you don't know what you're talking about, and just when I was wishing that one day we would have a conversation about -- let's say -- the greatest living poet or how much better a film-maker Fellini is than Tarantino, Sophie had a large seizure that I just know was a result of the anger in the air and maybe even how boring her brothers' arguments can be (Sophie and I are the same about these things, I am certain, but she seizes instead of dying a little inside at the general clusterfuckery). I probably said as much, because now that they're 17 and nearly 20, I don't bite my tongue as often as I might have when they were younger. Enough is enough.

But here's the thing. Those boys jumped up and into action helping me to help Sophie, and I realized that I am, perhaps, the luckiest mother in the world.

It's Not Who She Is

That's a spooky picture, isn't it? Sophie's the white-capped one in the background, lying in her bed. She was wired up today with an ambulatory EEG -- no reason in particular, although I'm interested in seeing whether she's had a return of the dreaded ESES. I think I wrote about ESES on this little blog back in the day -- Sophie had it when she was ten years old and again when she was fifteen. Yet, even as I type it out, I'm doubting that she's had a recurrence. It's not in my gut.

So, ye olde EEG. I remember when the EEG was ink on paper, the electrodes were glued on with an electric gun thing that made a horrible noise, and you needed the same gun and a foul-smelling ointment to get them off. The tech would fiddle with the dials as the ink jets clicked across the paper. It's all a blur, those early days -- a blur into darkness. They still use glue and colored wires that map the brain and record its activity (or fuckery, in Sophie's case) in a little box that you can sling over your shoulder. It's called an ambulatory EEG.

EEG is short for electroencephalogram, in case you're an initiate into The Great Mystery of the Brain. The EEG records brain activity in a moment of time, and in this case will record those moments of time overnight. If one occurs, it will "capture" a seizure.  It also shows the “background,” the non-epileptiform activity or changes, the slowing and spiking of brain waves. Whether Sophie has had a bazillion or no seizures clinically (to the eye), her background has always been abnormal. That’s it. 

Despite the technology, it’s not a complete picture of Sophie’s brain. 

It’s not who she is. 

Every now and then I get a feeling of what it feels like to be accepting. The other night I got Sophie out of her bed where she'd been lying most of the day having had some seizures. I fed her some mashed pinto beans and avocado, and her mouth worked eagerly to chew and swallow it. These are small things, true, but I knew what it was to count them as something less than momentous and more like flow.

Fortnight

So, tomorrow (Friday) marks the end of the second week of Sophie's recovery from her wisdom teeth extraction, and it appears that she's turned the corner. My poor baby girl suffered so much for so many days, but she's rallied and is eating again, has stopped having so many seizures (sometimes more than six, seven a day), can walk a few steps, has great eye contact and has even smiled. Knock three times. 

I am relieved. I am so very grateful.

I'm also a wreck, the proverbial ashes after the Phoenix has risen. I've probably made that cliched analogy 5,432,897 times in the last twenty or so years, but it's the damn truth. I am wasted. Sleep-deprived. Out of my gourd stressed. One of the highlights of the fortnight (how often do you hear the word fortnight these days?) was the early morning that I staggered into her room to check on her and came upon a scene straight out of a horror movie. There were ANTS marching along her windowsill and across her bed and onto her face and into her ears and mouth and nose and braids. I'm not kidding you, Reader. Hundreds of ants. She was asleep and stayed asleep (I imagine she was not just asleep but post-ictal after having a silent seizure that I wasn't aware of), even as I frantically brushed the ants off of her, stripped her, lifted her up and lay her on the floor, ants crawling all over me, then, as I ran to the kitchen, grabbed a bottle of Windex with vinegar and started spraying down the windowsill and the bed and then stripping the bed and rolling everything up and bringing it to the washer and then running to the hall closet, grabbing the vacuum cleaner, climbing onto the bed and vacuuming everything. Sophie slept on the floor the entire time. It was about 5:30 am, and while I thought about waking The Brothers, I decided not to -- they'd probably only stopped playing a few hours before that dreadful game that every kid is playing, and let's just say that there are some things, some entirely insane moments of this caregiver life, that I want to spare them from remembering. When I was done vacuuming, I picked up Sophie from the floor (yes, I picked her up in a kind of squat that you see those Olympians do with barbells) and carried her to my bed. Then she started to have a seizure, and I effectively dissociated in a similar fashion in my mind as I'm doing here on the screen.

I can't remember if it was that night/early morning or another one that I called my friend Sandra in New York and wailed, but she helped me as did you and you and you (you know who you are). This community is everything. Thank you.



So, what else?

I can't go without mentioning the absolute shitshow happening at the border of our country. Would that we've reached a turning point today when the AG actually quoted from the Bible to justify the practice of separating children from their parents and That Sanders Woman reiterated the Bible to justify the fuckery. I'm not quoting any more Bible verses here except to repeat what my son Henry yelled when he heard about it. You could probably pick out any Bible verse and twist it enough to say that Jeff Sessions is a POS. Amen, son.

It should now be the turning point where we take to the streets and storm the WalMart where those boys are housed, help them out and throw the POSPOTUS and his Mafioso into it with all their supporters and enablers to live in to the end of their days.

And where are the GIRLS?

Honestly, Reader, can you even make up a story more Amerikkkan than illegal brown children being housed in a former Walmart -- a shitty megaMcstore, an altar to money and exploitation that has destroyed communities, sells mostly processed food and crap to the suckers who shop there because it's cheap and whose owners are revered for their wealth? That the Powers That Be are claiming God has ordained this -- well -- my god.

Call your representatives and demand that this stops NOW. 

Click here for other things you can do NOW.

Rules for Caregiving Post "Wisdom"* Teeth Surgery

1. Wake to the sound of a seizure at 5 am, a guttural moan and rattling, and run/hobble to patient's bedroom to assess situation
2. Administer large dose of CBD and CBDa via new protocol
3. Think who lives like this? while making sure patient is comfortable. Question pertains both to patient and caregiver
4. Turn on light (essential rule for those who struggle with psychosis in early morning hours)
5. Drop essential oil Frankincense into palms of hands, cup patient's nose for several seconds, caregiver's nose and then massage patient's feet
6. Recite secular prayers and pretend to administer Reiki
7. Note that second seizure does not happen, a small improvement from previous days
8. Change diaper and notice that hydration might be necessary
9. Worry and wonder 
10. Contemplate whether hydration might be necessary in hospital as patient slept most of previous day, having been drugged into oblivion because of too many seizures
11. Think who lives like this? as pertaining to patient. Curse wisdom teeth, so ridiculously named.
12. Text friend from East Coast who emphasizes importance of hydration.
13. Contemplate which hospital to take patient to for hydration, drawing upon 23 years of experience in caregiving
14. Contemplate waking College Boy or Brother to drive patient and caregiver to hospital
15. Contemplate the various pros and cons of hospital admittance
16. Read text from friend: Take her in
17. Continue contemplation of big city hospitals, private insurance and who takes MediCal as secondary
18. Curse the American health care system to ward off financial fears
19. Retrieve large syringe used to administer pharmaceuticals, bottle of cold Pedialyte from fridge and towel
20. Sit at patient's bedside and carefully syringe 5 ml of liquid into patient's mouth until 8 oz is down the hatch.
21. Help patient to cough up mucous with newly purchased $369 portable home suction machine
22. Think who lives like this? pertaining to both patient and caregiver throughout home hydration
23.  Lie next to patient and gradually realize that patient is not seizing like she had in previous days, has drunk an appropriate amount of electrolyte-balanced liquid and is resting peacefully
24. Rest peacefully next to patient while College Boy and Brother sleep unaware of caregiver and patient drama on other side of wall
25. Rise from patient's bed at 7:00 am, make coffee for caregiver and oatmeal for patient to hopefully eat later. Sip coffee and contemplate the universe
26. Bring patient 8:00 medication and coax another 8 oz of liquid into patient's mouth. 
27. Note, again, that no seizures have occurred
28. Think who lives like this? while planning a trip down to Santa Ana to visit a dispensary that has a good stock of CBDa. It's called Fiddlers Greens.

This has been a Public Service Announcement.

* The "wisdom" teeth are so-called because one is presumably wiser when they appear in late childhood, early adulthood. I call bullshit.