Serious

 

My kindergarten picture makes me feel an enormous sense of relief. It grounds me. It makes me smile. I'm not the sort of woman who smiles easily, and I've been the sort of woman who, when asked to smile (usually by men), feels but doesn't act (I'm that kind of woman) irritated. That's partly because it's always annoying to be told (by men) to smile (and also to be called, cheerfully, by medical professionals Mom), but also because a serious person generally has a lot of wackadoodle inside herself, no small amount of weird and a predilection for dark humor that those who wish for smiles don't see. At worst, the men who tell me to smile might/would prefer that I not be so serious, that I look pretty or would look pretty when you smile. I was serious at five years old for my very first school picture. I didn't like birthday parties or cartoons, and the show Zoom gave me a headache. I read every single book in the children's section of the library, made my way methodically through even the biographies. I imagined myself a changeling, dropped in the middle of a cheerful family. I grew up in a happy family, but I imagined myself somewhere else, a  Jane Eyre, an orphan. Being serious doesn't mean I'm not joyful, though. I know that I was filled with joy that day despite my serious expression. I'm a serious woman who doesn't smile easily but am busy, in there, laughing. 

That's all I'll say about that.

I've been thinking a lot lately about my Italian grandmother and my Syrian grandfather. I've been wondering how they'd respond to this weird world, this circus, this Terrible America. They lie on opposite sides of my family tree, my father's mother and my mother's father. I've been thinking about them because of two separate details I remember, that stand out, that define them for me, decades after they died. I feel both of them in my bones. My Nonni wore a black dress and rolled thick stockings with black shoes for as long as I can remember. In her later years, she stayed with my family for a significant part of the summer. She walked around the house with her rosary beads, muttering, Pray that I die, pray that I die. Over and over she prayed that she'd die. She was serious. My Syrian grandfather chain-smoked even after having part of a lung removed. When he got riled up, which was a lot, he yelled the Arabic word for SHIT! which is pronounced Cutta! with a hard back of the throat c. He was serious, too.

24 Hours In: The Hospital Chronicles (warning: adult language is involved)

When I was sitting in the ER yesterday, listening to the groans and moans of the traumatized behind the vinyl curtains, I was busy writing a story in my tiny little mother mind™about Issac The Nurse who wore beat-up tennis shoes, a scruffy beard and a yarmulke. We were in the ER at one of Los Angeles' most prestigious hospitals in order to gain admittance to get an overnight EEG. At 11:15 in the morning, 24 hours ago as I type here, we were placed in an ER bay to wait for the bed in the hospital so that we could gain some knowledge about Sophie's ESES shenanigans. We had originally planned to get an ambulatory EEG, but I was concerned about all the co-morbidities of the ESES (the increased seizures, the choking and inability to walk, etc.) and had had enough of it so insisted to The Nice Neurologist, who agreed, that maybe we should just go in to hospital to figure stuff out (pleaser remember this phrase for later, Reader) and get some tests, etc. I don't want to bore you with the details, but suffice it to say that Sophie and I sat in the ER bay for the next ten hours. When we finally got a room, we were told that it was too late to hook up the EEG and that it would be done first thing in the morning. Here's how I reacted:

My friend Sandra actually sent me this picture on about hour seven or eight in the ER, and let me tell you, Reader, that's what got us through. Even now, as I post it, it makes me laugh out loud. The only reason we needed to hook Sophie up (that's neurological parlance for attaching electrodes to the scalp in order to read the brain's shenanigans) was to see the OVERNIGHT ACTIVITY. Again, I don't want to go into details, but at some point The Hospitalist (further evidence of the corporatization of healthcare in this g-d country) who was earnestly trying to get a neurologist or a fellow or a resident to get the EEG thing going, told me that it was like talking to a wall. I called on the great forces of my tiny little mother mind™and asked him to send The Wall my way, but IT NEVER HAPPENED! I apologize for the Trumpian punctuation (whom, I might add, gave me my second massive laugh of the day when I read this quote:

)


Sophie's father came to the hospital at hour eleven, and I went home to sleep. When I arrived back at the hospital this morning, Sophie was still not hooked up and eventually Damage Control, in the form of The Hospitalist and Patient Care arrived in the room to talk me down.

Remember this?

Shortly after Damage Control, a tween with a nose ring and scuffed-up Converse shoes arrived to hook up Sophie, followed by a teenager who called himself The Resident Neurologist and who neurexplained to me what seizures were and how certain drugs worked. He also asked me whether our neurologists had ever thought of surgery for Sophie or the VNS. My tiny little mother mind™ was blown.







Wasn't I telling you a story?

Issac means laughter, Issac The Nurse said when I told him that I liked his name. We then had what I would consider a Biblical conversation (I actually have read the Bible several times and studied it both in a faithful sort of way in the last century and also as a very beautiful text that I do not believe as the word of God in the literal sense) about Issac and his mother Sarah who was believed barren when God finally graced her with a child, the news making her and her husband Abraham laugh uproariously at the thought of it since Sarah and Abraham were nearly one hundred years old. People lived longer then, Issac the Nurse said as he busied himself with Sophie, and I replied, No! Didn't they have shorter lives? Most women were dead in childbirth. Issac the Nurse informed me that this wasn't the case, that Issac From The Bible lived the longest of the three in his family and died at 180 years. I said I thought those numbers were probably highly significant and symbolic, but Issac the Nurse insisted that no, it was true. 

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.

Witnessing

I took Sophie to her quarterly visit with Nice Neurologist yesterday afternoon. Here's a caregiver tip: take someone with you when you visit a doctor, and you won't be reduced to your usual Psychotic Visiting The Doctor PTSD Self. Saint Mirtha came with me yesterday, and aside from the tremendous help she provides lifting the 4,000 pound wheelchair into and out of the back of my car and ministering to Sophie in the back-seat, her presence just calms me. I felt less chaotic, less alone, less like the person careening into space on my old copy of Sartre's La Nausée. I'm perfectly capable of doing these things by myself and have done so, but it's gotten very, very old in this the two thousandth and eighteenth year of our lord. During the visit with Nice Neurologist, I did my usual and asked him to reverse places so that I was sitting at his desk on the swivel chair and he sat next to Sophie on a folding chair. So I can better explain to you what's going on with Sophie, I said, and use the time to tell you about CBDA, about how I've been weaning the benzo and what dose you'll need to write a prescription for her at this point. Just kidding with the switching chairs. I used to call these visits with All the Neurologists The $475 Reflex Check, but these days I've noticed that All the Neurologists barely touch their patients, much less check their reflexes. Nice Neurologist is so open, though, and he generally has some interesting information about something or other related to immunology or studies being done on mice or genetics -- information that he doles out in a hopeful tone as it might distantly relate to Sophie in between the schooling that I'm doing. He writes down everything I say about CBD and now CBDA, and when I encouraged him to watch Sanjay Gupta's latest show on opioids and cannabis medicine, we had a healthy discussion about the fuckery of the Sackler family and Big Pharma pushing them on the country back in the day. I think I inserted somewhere in this discussion that I'd die happy if The Neurology Community recanted their stance on benzos, particularly with epilepsy patients, and I remember him looking a bit sheepish (was it the eyebrows or the mouth?) and not acknowledging it. He was, in fact, there to write that scrip for the benzo that Sophie's been on for eleven years and not much else. Sigh. Nice Neurologist is awesome, actually, in the long line of Neurologists Sophie and I have encountered during the last twenty-three years. I'm grateful for his attention even as I'm painfully aware that I'm sort of running the show. I made an appointment to bring Sophie back in mid-July and then wheeled her out to the waiting room to join Saint Mirtha who, when we left the office and went down into the parking garage, helped me put Sophie into the car and lift the 4,000 pound wheelchair into the back, even as the four Grown Ass Male Valets stood watching us, gawking. On another day I might have made some caustic remark to one of the men or even shoved them in my mind into one of the luxury cars out-sexing my Sexy Mazda and locked all the doors. Here's a caregiver tip: take someone with you when you visit a doctor, and you won't be reduced to your usual Psychotic Visiting the Doctor PTSD Self. You'll have a witness to all of it.

Christmas-Time Caregiving Extravaganza

Hint: This isn't Sophie. Read on.

Suspense, right?

Sophie has been home from the hospital for a few days, but we're still recovering from the latest We Don't Know What's Wrong With Your Daughter But She Doesn't Have Pneumonia And This Will Cost Approximately $125,347, Part of Which Will Pay For The Care She Received At This Particular Medical Establishment But Mostly Will Go Toward Padding the Pockets of The Plutocracy or Terrible America.*

Here's Sophie in her nest:

Here's me, eating a spoonful of lemon curd, left-over from an order for a Gingerbread Forest Cake with Lemon Curd.**

Oliver had surgery this morning on his finger. He had a benign bone cyst that needed to be removed, so we rose earlier than the sun this morning and made our way to Santa Monica where the nice receptionist charged us $934.56 for THE DEPOSIT, and the nice Anesthesiologist and the nice Orthopedist and the nicest Nurses prepped Oliver for the surgery. He woke in the Recovery Area quite nicely, and in the car on the way home waxed rhapsodic about how his former fears for anything medical had disappeared and I often overthink stuff and am so glad to release these fears and thoughts. Honestly, Readers, it was like the usual fabulous Big O, without the EDGE. I'm contemplating a nice propofol drip for all of us.

Here he is in his nest:

His cheeks are not that full. He's just eating a bagel and watching something dreadful on Netflix.

In lieu of propofol, I'm continuing to eat spoonfuls of lemon curd.

*Terrible America is an apt expression coined by the great Rebecca L, poet extraordinaire. I think we can safely say it is a Terrible America that is run by a POSPOTUS and a repugnant political party that is actively supporting its sexual predator in chief as well as a pedophile Christian judge running for Senator of Alabama.

**Everyone Needs Cake™ is my new gig. I make cakes for people. I use the money I make to support the Medical Industrial Complex. Please help me to use it for shoes or make-up or something. I'm getting old and would love this really large cozy blanket I saw on the Johnny Was website.

Report from the Tiny Little Mother Mind™

I spent quite a bit of yesterday in my bed in my nightgown reading Hemingway's A Moveable Feast. I'm having another Books & Bakes salon at my house in early June, and that's what I assigned. I've never read the book and am completely and utterly smitten by it. I am an admirer of Hemingway but not a lover, so it's taken me by surprise. With the exception of my beloved A Farewell to Arms, I thought that I would perhaps live to the end of my days without re-reading anything else by him, and I certainly didn't expect to be gobsmacked by his nonfiction. But there I was, all day, picking it up, reading a few pages and then having to lay it down to savor. In between I watched a couple episodes of The Wire, my other new obsession.

Where was I? Isn't this supposed to be a Tiny Little Mother Mind™ report? Yes. Yes, it is. Somewhere in the middle of my relaxing day, my land line rang (who knew that we'd be typing and reading with such ease a phrase like my land line rang), and because the caller ID was the name of a famous physicist, perhaps the most famous physicist of all time, I picked it up and answered it. If you're like me, you rarely get a phone call on your land line, and if you do, it's inevitably someone masquerading as the FBI, threatening you with jail over nonpayment of back taxes or someone trying to convince you that solar panels on your peaked roof might possibly work, or even a representative from your prep school asking for your contribution to the year's $500 million capital campaign. It's rarely a person with the name of the most famous physicist in history, so I imagine you'd answer it as well. Hello? I said, and the physicist introduced himself as the anesthesiologist who would be working with Sophie on Tuesday morning at the dentist's office. He had some questions for me. Because I was subtly influenced by Hemingway, I thought There is no reason to trust that this is a physicist. He is a doctor. The weather is bad. I am lying in my nightgown on my bed. It is the middle of the day. It is Sunday. The doctor with the physicist's name proceeded to ask me a series of questions about Sophie that included what medications she was on and what, exactly, her issues were. I guess I should backtrack and tell you that Sophie has been getting so feisty at the dentist's office of late that it's nearly impossible to clean her teeth, much less get x-rays. In fact, she hasn't had x-rays in years, and who knows what's happening with her wisdom teeth? Hence, the scary procedure tomorrow morning. Think about us at 10:00 am when the physicist/anesthesiologist does his work.

But back to the tiny little mother mind™report. During the questioning, the doctor with the famous physicist's name learned that Sophie was taking Onfi, Vimpat and cannabis. Right, he said, you mean Marinol, don't you? I said, Um, no. Marinol is synthetic THC. Sophie is on a high cannabidiol product and THC oil at night. I quickly explained The History of Sophie's Seizures and Use of Cannabis. You know it, right? The doctor with the famous physicist's name did not respond in any way. He was, naturellement, not interested in hearing how cannabis has helped Sophie so dramatically. I say naturally, with a French sneer because it's been my experience that doctors are, actually, not interested.

Anyhoo.

I began to feel the encroachment of the tiny little mother mind™in the middle of the good doctor whose name is a famous physicist's explanation of what the effects of benzodiazepines are on the brain, particularly with the addition of anesthesia. He was quite thorough despite my periodic interjections that I'd been doing this thang called epilepsy for more than two decades. In other words, as my old friend Susan might have said to a very famous neurologist Tell me something I already don't f*^ing know. Reader, I refrained from speaking like that, but by the time he'd finished mansplaining, given that I was still in bed in my nightgown with Hemingway lying forlorn next to me, I looked like this:

Now, ya'll know what really sustains me is my dogged sense of humor, so I thought I'd tell the doctor whose name is a famous physicist's that given my tiny little mother mind™and his famous name, I felt super confident about my daughter being under his care. He did not laugh. Not even the tiniest laugh. I refrained from asking him whether he'd been the doctor who administered propophyl to Michael Jackson that time, but I did ask are you, like, The Famous Physicist's Physicist? and he replied, Yes, and I asked, Are you related? and he said yes, a distant trace but he had not one, not one tiny little trace of laughter in his voice so I knew he'd either been asked it too many times or was, perhaps, a doctor whose name is a famous physicist's without a sense of humor. He moved quickly into A Discussion of Reimbursement. I learned that he was paid on the day of service, although proper insurance papers would be given to me to fill out and mail in myself. What is your rate? I enquired in my bravest tiny little mother mind™ voice.

The doctor with the famous physicist's name said, $800 an hour, and I said okay, and at some point said good-bye and see you Tuesday morning. And then my tiny little mother mind™ told my mouth to let out a tiny little moan, even as I picked up the Hemingway and turned to the marked down page because I had to, I just had to reread this:

I closed up the story in the notebook and put it in my inside pocket and I asked the waiter for a dozen portugaises and a half-carafe of the dry white wine they had there. After writing a story I was always empty and both sad and happy, as though I had made love, and I was sure this was a very good story although I would not know truly how good until I read it over the next day.

The Difference Between Feeling Possessed by the Devil and Holding for a Medi-Cal Person

is nil.

Continued Squirrel Girl Imperil

So, this morning I walked outside to get in my car and drive the two blocks to CVS in my sexy Mazda to buy a cool mist vaporizer that might help alleviate my and Sophie's terrible coughs that I guess I'll blame on a virus worsened by the incredibly dry air that's accompanying the drought caused by global warming. Did you get that? I was immediately made aware of something angry chittering at me. I looked up, and there she was -- The Mother Squirrel. She stayed on that branch for what seemed like minutes but was probably a few seconds, and the whole time kept up the most angry racket of mutterings and growlings. For a split second I felt terrified, certain that she'd come leaping off that branch like some kind of Monty Pythonesque beast and splay herself all over my guilty face, but then I remembered that as a human, the world is under my dominion***, so I pretended bravado and looked down for a moment to adjust my phone, took the above photo and then attempted an Instagram video as she scampered away. Basically, I got away with a scolding, but I'm certain she was pissed at me for not taking care of her baby. I have no idea whether her baby is even alive, but when I got into my car, my other least favorite animal appeared from under my car -- a big, fluffy black cat -- which makes me a tad suspicious that she was waiting around for another baby to fall from the nest.

In all seriousness, if there's such a thing as karma, this might be a testament to its veracity. Baby squirrels falling from nests, black cats lying in wait, sexy Mazdas  instead of legs, a persistent cough and headache, no rain for eight months -- what does it all MEAN?









***Just kidding. I don't really believe that the world is under my dominion. I was only quoting a very well-known Mormon blogger who years ago poo-pooed global warming with that Biblical imperative.

Group Therapy

group therapy on The Bob Newhart Show

Who in the special needs world doesn't hate group therapy at a certain part of the proverbial "journey?" Is there anything worse than listening to people from different tribes drone on and on about their experiences coping with whatever messed up situation has befallen them? Is it just me that would rather hash it out, ad nauseum, only to those in my tribe -- especially when things really fall apart? You know: misery loves company, et al. I'll always remember the zing of recognition I felt when I read People Like That are the Only People Here: Canonical Babbling in Peed-Onk, the great short story by Lorrie Moore that I carried, crumpled in my purse, for many years as I trudged around New York City with Baby Sophie. 

A beginning, an end: there seems to be neither. The whole thing is like a cloud that just lands and everywhere inside it is full of rain.

The first person I met back in those days was my friend Jody whose daughter Lueza had suffered a traumatic brain injury at birth. We participated for a bit in a local support group for mothers of children with severe "issues," but it was our shared sense of dark humor that bound us together. During the dark days pre-internet, it was Jody who told me about a newsletter called "Mothers From Hell" -- a sort of antidote to "Welcome to Holland." She was (and is) the sort of friend who Moore so perfectly described in her short story in one of my favorite passages:

She loves her friends, especially loves them for coming,

since there are times they all fight and don't speak for weeks. Is

this friendship? For now and here, it must do and is, and is, she

swears it is. For one, they never offer impromptu spiritual lectures

about death, how it is part of life, its natural ebb and flow,

how we all must accept that, or other such utterances that make

her want to scratch out some eyes. Like true friends, they take

no hardy or elegant stance loosely choreographed from some

broad perspective. They get right in there and mutter "Jesus

Christ!" and shake their heads. Plus, they are the only people

who not only will laugh at her stupid jokes but offer up stupid

ones of their own. What do you get when you cross Tiny Tim with a

pit bull? A child's illness is a strain on the mind. They know

how to laugh in a fluty, desperate way-unlike the people who

are more her husband's friends and who seem just to deepen

their sorrowful gazes, nodding their heads with Sympathy.

How exiling and estranging are everybody's Sympathetic

Expressions! When anyone laughs, she thinks, Okay! Hooray: a

buddy. In disaster as in show business.

So, I'm back for less than twelve hours, and Sophie is having one of her days. She's already had five giant seizures, and I've had to pull out the Diastat and administer it. She's going to miss her first day of Communicamp, and I'm going to spend the better part of the day probably worrying that this is it, the beginning of the end. That's what I do on days like this, that and laundry.

Pulling through is what people do around here. There is a

kind of bravery in.their lives that isn't bravery at all. It is automatic,

unflinching, a mix of man and machine, consuming and

unquestionable obligation meeting illness move for move in a

giant even-steven game of chess--an unending round of something

that looks like shadowboxing, though between love and

death, which is the shadow? "Everyone admires us for our

courage," says one man. "They have no idea what they're talking

about."

I'm not in a support group, anymore, at least not like the olden days, but I do have you. And you and you. I'm grateful for that.

Take Notes. In the end, you suffer alone. But at the beginning

you suffer with a whole lot of others.

***All excerpts are from Lorrie Moore's short story. You can read the whole thing HERE.

Why I haven't gotten around to the medical marijuana, yet

Thanks, D., for the awesome link!