Sunday, September 25, 2016

Sunday Night

Homeless Encampment, La Brea Blvd., just south of Olympic
Los Angeles, 2016

Sophie's not doing too well, again. I'm not sure what's going on or when it's going to turn or even if it's going to turn. It's not so much seizures (although they're persistent) but more her overall well-being. This feeling I get when I spoon food in her mouth and she's working so hard to chew it. Or maybe she's not working at all. The way her juice comes out the corners of her mouth and drips down her arm. I imagine the sensors in her mouth dulled, struck by lightning, over and over. Some food falls out of her mouth and down the bib and I look away. I have been watching the suffering for a long time. She has been suffering for a long time. I'm not sure whether she actually is suffering or whether I am suffering doing the watching. The lines between us are blurred. I realize that's fucked up. Mea culpa. I forget to abide. I'm not sure when those questions when will it get better? will I figure it out? is it this? is it that? will she know? what should I do? will he know? stopped rising out of my brain. Perhaps I stopped feeding them the yeast of discontent and doggedness. The line between resignation and acceptance is thin and bloody. My tears are still clear. It's all pretty mighty and terrible. Terrible in the Biblical sense. Like awesome. Everything unleavened.

The only thing is to Be Here Now.

Today, my friend Melissa stopped by with her husband Marc. I haven't seen them in ages or even talked to her in while. I had been sitting in Sophie's room, reading a book while she slept fitfully, loaded up with rectal Valium. I'd been crying. A lot. Melissa texted me from outside, so I went out there and gave her a hug. She gave me a tiny silver medallion with a mermaid on it. She had no idea I'd had such a morning, that Sophie had had such a morning. Yet she was there with a mermaid charm. Everything lifted. Poof.

I read this somewhere:

You are my compass
I'm perpetually lost

I love this:

Friday, September 23, 2016

How We Do It, Part LIX

I was all psyched to let ya'll know what happened today when I made my visit to my neighborhood police station, but then this happened, and since I still have a phone call to make to clarify some of the things I learned in a discussion with a peace officer, I'm going to tell ya'll about this instead of that.

It's nothing, really, but just as I was texting with my fellow special needs parent Heather about the soul-killing texts we get from our respective daughters' schools, about their various bodily functions, numbers of seizures, etc. (and god bless the teachers and aides, I'm not dissing them), Sophie's bus pulled up in front of my house. I was in my bedroom and heard the tell-tale squeal of the brakes, but Oliver yelled from the front of the house anyway, MOM! SOPHIE'S BUS IS HERE! I got up from my desk and made my way through my mansion and out the door to the end of the driveway where the bus had parked. It wasn't until I got to the end of the driveway, though, that the door opened, and a tiny little young man climbed down the steps and greeted me. He was, perhaps, twelve years old and dressed in a bus driver's uniform. He held a clipboard.

Hello, he said to me.

Hi there! I said and peered in to see Sophie.

I'm going to need to see some identification, he said.

I looked at him and then around and then behind me, where Oliver stood looking at me. Oliver rolled his eyes.

Excuse me, I said. I'm her mother!

Sophie's bus aide poked his head around and told the Boy Bus Driver that I was indeed her mother.

The Boy Bus Driver said, Oh, you look different and I need to be sure that you are her mother. I'll need an identification. Given that I've thought about gardening in the nude to scare away McMansion buyers and developers, I looked down to double-check my appearance, but I had remembered to wear pants, my white eyelet blouse wasn't as revealing as it could have been, because I'd worn both bra and camisole and with the possible exception of glasses and long hair with a streak of gray at the top, I look much the same as I've looked for the past several years. I'd even venture to say that I look better than I have in the last several years as I'm much happier, but that's basically unbloggable material.


Reader, this was definitely a first in the near-twenty years that Sophie's been riding the bus home from school. Granted, she often disembarks from the bus into the welcoming arms of one or two other caregivers or even her father, and bus drivers come and they go, and I can't always keep track of them. I turned to Oliver whose eyes by this time had rolled so far back into his head that I couldn't see them. Oliver is privy to much of the shenanigans and encounters with the LAUSD because I homeschooled him for a couple of years, and he's got a sense of humor as dry as southern California, which is pretty damn parched. He's also got a memory like a steel trap and swears he remembers me screaming at one of the officials from Sophie's middle school back in the early part of the decade when he wasn't even five years old. He said I was pretty scary, and I said, Who me? Bless your heart!

Oliver, go get my wallet, please, I said, and he ran back up the driveway and into our mansion. He came out a few seconds later and handed me my driver's license which I then gave to the Boy Bus Driver. He took a look at it, at me, down at his clipboard and then back at it and at me and back down. He nodded and then proceeded to let down the bus ramp. I caught myself from making some unorthodox crack about how I'd certainly want to meet the woman who'd kidnap Sophie because damn, she'd make the best wife for me, because -- well -- you know. Boy Bus Driver didn't look old enough for that kind of folderol, seemed far too earnest to appreciate the insane gallows humor that keeps me alive.

As the ramp slowly descended to ground level, he made himself look extremely busy and efficient pushing all the buttons and undoing all the straps while Oliver took Sophie's backpack from her aide and slung it over his shoulder. There's still something a tiny bit painful about watching the ramp descend to the sidewalk. Sophie looks disheveled in her wheelchair, and the fact that she can't communicate about her day, about the bus, about the Boy Bus Driver or really, anything, just hits me hard sometimes.

Oliver looked at me, then at Sophie and then at the Boy Bus Driver and said with a straight face, Hey, that's not Sophie. That's not my sister. 

Then we took off, me pushing Sophie up the ramp to our mansion like she was a queen in a chariot, and Oliver holding her backpack stuffed with jewels.

Thursday, September 22, 2016

There is Nothing New Under the Sun and Love is Still a Verb

Russell Simmons

A dear friend wrote me an email, asking me where I'd been on the blog and why I wasn't posting as often as I generally do. I can't really tell you why, other than I feel a bit dumbstruck and distracted by various things in my life (good ones) and by the shitstorm/clusterf*^k of the last few weeks in this country. I don't have anything more to add to what you've already read about the senseless brutality against black people by police officers or about the monster that is running for President of The Disunited States. I have decided to be as vocal as I am wont to be and even went so far as to tell a particularly dense white commenter on a black friend's Facebook page (you know the kind -- the one that says all lives matter and spends an inordinate amount of time making excuses with rhetorical questions) to STFU. I actually told someone to STFU and LISTEN for the first time in my life. I know there are many of you out there who will read that and raise your eyebrows and think that I should be less angry or maybe more tolerant or more Buddhist or Christian or gracious or whatever, but in this case I was not, and I do not regret it for one moment. The person who was doing all the mansplaining asked me another rhetorical question and then bowed out of the discussion. While I don't pretend to know anything at all, nor that I am able to change everything, I do know when we white people are flailing around and making excuses for something that is obvious and plain to see, and I do take seriously the directive of black people who are asking for us to be co-conspirators and not just allies. I agree with my friend and mentor Lidia Yuknavitch, too, who said the following:

well hell, i'm of the mind that we need all the voices, the signatures and protests, i think we need the calm and eloquent voices, i think we need the riots, i think we need the diplomatic nice people who call for balance, i think we need the agitators and rabble rousers and those willing to risk danger, i think we need all the stories and images and yawps and poems. i think we need it all. radical change does not come from one mode, one voice, one way of articulating. radical change comes from a plurality of voices that rise variously and unstoppably and refuse to shut up.

Tomorrow, Oliver and I are going to our neighborhood police station (a couple of officers whom I know personally since I've called them to intervene in the bullshit goings-on at the McMansion built behind my house) and enquire about how they as a station or part of the greater LAPD are working on non-violent conflict resolution. I'm going to tell them that I'm concerned and upset by what's happening in other parts of the country and hope that they are, too. I'm going to ask them what their policy and saturation is regarding body cams. I'm going to tell them, too, that I will be writing about their answers on my blog.

It's a little thing, such a small thing, but if we could all grab that veil and keep pulling we just might change things.


Sunday, September 18, 2016

A Short Erotic Tale From A Nail Salon

The Butterfly House
Pacific Grove, CA

I'm so behind.

I'd had the shiny red gel polish on my nails for over two weeks, found myself curling my fingers under so I couldn't see it. Garish. I'm not a manicured hand kind of person, prefer to use clippers, the blunt. I have large hands, but they're not ungainly. My fingers are long and not too wrinkled. They are dexterous and strong. I feel too self-conscious with polish on them. Gel polish lasts for weeks, but you have to go back to have it removed or risk something dire like your nails peeling off. I can't believe I'm writing about this. It's a process to get the gel polish off, and I was getting impatient as the manicurist dropped acetone on my fingers and wrapped each nail in foil, then scraped the color off and repeated, over and over. There were three of us lined up at the table across from three manicurists. The lady to my immediate left was an Orthodox Jew. She wore a pleated navy skirt, a blouse with a Peter Pan collar, a crew-neck sweater, pale panty hose and flat shoes. She was in her early twenties, yet had a wedding band on her slender finger. She had beautiful eyes with dark long lashes and white skin. The manicurist was buffing her nails, but before each new task, the Orthodox woman asked, What's that for? She exclaimed sweetly over my own red nails, wondered what the process was like and whether she should try it. I told her that I'd done it for a party and enjoyed it for about a week. It doesn't chip, I told her, but I'm sort of creeped out by it now. I told her that sitting for an hour getting it removed was not something I'd probably do again. The lady to the Orthodox woman's left was slumped in her chair, her long black hair scraggly and draped over her shoulder. She had blown up lips, bare of make-up, and they looked painful. Her white face looked like it hurt, and I couldn't tell if she was twenty or fifty years old. She tapped at her phone with whatever hand was free, her nails bitten down to the quick. She groaned every now and then, said she was tired and hung over.  It was late afternoon, the light from the west flooding the room. The sun was going down and, for some, it was apparently time to get ready. For what? I wondered. The manicurist attached what looked to be two-inch plastic nails to the tips of the hung-over lady's fingers, filed them to a point, painted them gray. The two of them then huddled over the woman's phone to look at what I assumed were photos of hands and nails, and then the manicurist brought out a little box of glitter and jewels, proceeded to pick them up with a tiny pair of tweezers and apply them to the lady's daggers. Meanwhile, my own manicurist unwrapped the foil from my finger, lifted the acetone-soaked cotton pad from my fingernail and began scraping the last bits of red still adhering. The Orthodox woman moaned when her manicurist poured lotion on her forearms, stood up and began massaging them. Your skin soft, the manicurist said to the woman. O, you have good hands, the woman said, and she sighed. She had clearly never had her arms massaged in quite that way, I imagined. I smiled at her. The woman at the end waved her glittery gray talons at her manicurist, remarked that on her date the previous night, one had broken in half and fallen off. I wondered briefly if she were a porn star. I felt distracted. I glanced at the woman on my left who was getting another application of lotion on her other forearm, and when the manicurist began her slow kneading of the young woman's white skin, I saw her eyes flutter and roll up and backward. I almost groaned for her but looked down instead at my own hands resting in those of the manicurist, a fine red powder falling from them, each fingernail now naked.

Here's some French love poetry by Andree Chedid:

Preuves de l'amour

Gisement de désirs
Eperon du souffle


Recouvre la fêlure
Soulève nos sols

Tisonne nos cendres
Estompe nos voûtes obscures.

Here's the translation:

Proofs of Love

Stratum of desires
Spur of the breath


Recovers the crack
Raises our earths

Stirs our ashes
Blurs our dark vaults.

Monday, September 12, 2016

On Vacation

Otter, Moss Landing
Monterey, CA
Out until Thursday.

Photos of Big Sur, The Henry Miller library, California Condors, Whales, and Otter Crossing to follow at some point when I get up from my position here.

I miss ya'll already.

Friday, September 9, 2016

Smells Like Bullshit, Episode 45,678,982

Unless you've been living under a rock (and I've said it before, I understand), you've seen the various articles coming out at least once a day regarding radical price increases of popular pharmaceuticals. Most recently, there's the Epi-Pen story with its handsomely paid CEO, daughter of a Democratic congressman, and today's selection was about pharmaceuticals that treat inflammatory conditions, including arthritis. You can read about that right here and then come back to hear what the tiny little mother™ mind thinks about it all.

(this blank bit of screen has subliminal messaging because I'm a bit of a conspiracy theorist and tremendously biased)

Are you back? I was going to make this a Facebook post but then got carried away enough to realize that my blog was a perfect place to rant a bit, especially because I so rarely do that anymore. That was a joke. I'm thinking aloud here, typing so fast my fingers are a blur (I scored very very high on finger dexterity when I took a comprehensive test back in the last millennium a skill that comes in handy for a number of things that I won't elaborate upon here), but it will help me to get it out of my system so that I can go back to my day with a modicum of sanity. You know, finish the housework, navigate the systems of care for Sophie, coax Henry along the college application process and remain level-headed while shopping at Target for shorts with Oliver.


This is mainly what I want to say about the continued clusterf**k that is Big Fantastic Pharma and Big Grandiose Private Health Insuranceland or The Big Big Medical Industrial Government Complex (I sound a little like Drumpf now, don't I?) as far as it relates to Medical Marijuana World. When this rant's finished, I'm going to fix it ALL. It's going to be GREAT.

Along with the EpiPen and arthritis drugs, epilepsy drugs have long fluctuated wildly in price -- a single dose of ACTH, the steroid routinely given to those with infantile spasms cost $154 when we gave it to Sophie back in the late 1990s. I believe it's upward of $16, 000 now, and that's not because of inflation. That's because of the mumbo-jumbo Big Pharma puts out -- you know -- the high cost of research, rising costs, blah, blah, blah, etc. Diastat, or rectal valium, an emergency medication that is now in generic form, has cost me as much as $1200 A DOSE and as little as $7.50. Long-time readers of a moon worn as if it had been a shell might remember my Drug Mule series when I chronicled what happened to the price of clobazam and how I gamed the system. I'll refresh you:

1. Called Frisium, clobazam was not FDA-approved when we first started using it. I paid out of pocket for it for many years, purchasing from a London pharmacy through a NYC pharmacy. Cost: $150 for a month supply. So, manageable.

2. Approved by the FDA and renamed Onfi, it was not covered under my Insurance Company's formulary and was priced at $1800 for a one month supply, 1/2 of which I was subject to, so that's $900.

3.  I was no longer able to get Frisium but located a pharmacy in Canada that sold clobazam (remember Onfi, Frisium and clobazam are all the same drug and close cousins to Klonopin, one of the most heavily prescribed drugs in the US of Opiate Addicts) for $60. It became illegal to ship the drug across the Border, so two friends of mine in the Movie Industry, on location, picked it up and ferried it back to me. This was legal -- well, sort of -- but not sustainable, and in lieu of flying up to Vancouver every three months (I contemplated doing this and making a little vacay out of it), I turned next to:

4. A non-profit organization on the east coast that helps people with certain conditions get drugs for free or at a reduced price. I should add here that the Magnanimous Manufacturer of Onfi offered to give me a coupon for 12 months that would have taken $50 off the $900 co-pay (similar to the Epi-Pen CEO's magnanimity in lieu of reducing her $5 trillion salary). The non-profit PAID FOR THE ENTIRE CO-PAY which was like manna from heaven. I just had to swallow the small amount of vomit in the back of my throat when I found out that the non-profit was largely underwritten by the Magnanimous Manufacturer of Onfi and GOT A HUGE TAX WRITE-OFF for their charity to folks like us.

Are you following this because those four points were really just illustrative and an aside. Here's what I want to say today, in reference to that New York Times article linked above:

Guess what else is a potent anti-inflammatory?

I'll give you a hint: The DEA recently confirmed its status as a Schedule 1 drug, along with heroin and cocaine, meaning it has no medicinal value and can't be studied except under the most draconian of regulations.

Are you following me?

I'm no conspiracy theorist, but I suspect Big Pharma is getting their ducks (or dicks) in a row as they scramble to research and develop their own cannabis concoctions. The fact that we can grow it ourselves and make our own medicine means no money for The Big Guns, so we must all be subject to the scare tactics of Big Government and Big Private Entities. Free enterprise, baby. Capitalism, baby. Let the Market Do Its Thing, baby.

Us? THC, baby.

While we're smelling the bullshit, if you have arthritis and live in a state where you can get some, try cannabis. It's a potent anti-inflammatory. I am not a doctor, though, and have only a tiny little mother mind™so please consult yours and don't sue me.

Tuesday, September 6, 2016

THC, Baby

Sophie in West End apartment, New York City

The tiny little mother mind™in concert with several other tiny little mother minds™ thought that a small amount of THC, given during a particularly prolonged cluster of myoclonic jerks that might and probably would have culminated in a large and violent generalized tonic-clonic, might do some good.

Mark this space.

I'm going to admit that my hesitation in typing out anything positive is borne of a centuries old superstition that probably exists in most cultures and certainly exists in the southern Italian ones of which I am a descendent. By uttering something positive, I will jinx it and something bad will happen next. I think it might be called Murphy's Law for the WASPs among you. In modern times this might be called being a control freak or maybe even narcissistic and certainly egotistical and self-absorbed -- as if my every action and thought could influence the outcome, good or bad, or that it's all about me. That I don't believe I can jinx the good by typing out the bad is evident in the number of "bad" posts I have on this here blog, but remember my tiny, little mother mind™ and cut me some slack.

I know nothing and I'd bank on you knowing nothing, too, at least as far as why the hell Sophie's brain is so damn dysfunctional. I feel like I have to mark the positive, though, if I'm going to truly live in the present and be optimistic and cheerful (as per my I Ching reading).

Anyway, I gave her a little blip of THC during the cluster, and do you know that the seizures stopped? It wasn't immediate, and an argument could easily be made that they would have stopped eventually. That wasn't even the mind-blowing part, to tell you the truth. What happened was that the veil over her eyes was lifted and she looked clearly at me and smiled. She kept smiling, too, for the next few hours, off and on. She also had no clamminess and stopped drooling. Clamminess and drooling are two things that strangely literally break me. It's like they're superficial manifestations of the whole damn clusterf**k, and I feel broken, literally broken, when Sophie is clammy or drools excessively. I just know that she's deeply miserable and uncomfortable. After the couple of drops of THC, though, she looked brighter and definitely happier. Her palms were dry, and she stopped drooling. She seemed really, really comfortable.

Was she stoned? Perhaps a little bit, but that's okay.

THC, baby.

I write a lot on here about the effects of Sophie's seizures on me and our family, and I might not often convey how anguished I feel about the effects of them on her. I'm thinking of it, though, all the time. While there's a certain amount of dissociation for me which I imagine is a survival technique, the border between Sophie and me is very thin, a scrim, really. I believe that comes from the two of us being a kind of extreme parent and daughter. Sophie is completely and utterly dependent on me in the same way that she was as an infant. She's also powerfully herself, imbued with an evident grace and intelligence that people have remarked upon her entire life. This doesn't mean that our identities are blurred as much as it means they are fluid. That relationship is one that I know other mothers and sons/daughters like us struggle with -- it's the cause of much anguish, of marriages and family relationships broken, but it's also something precious and wondrous and rare.

I gave Sophie a bit more THC again later in the weekend, and the same thing happened. I might be on to something, and despite my superstitious nature, I'm going to keep you posted. Don't forget that we are on the frontline of this medical cannabis revolution and that the Powers That Be are taking their sweet time, mired in politics, money and party lines (we need more research). It's harrowing, but we on the frontline have to not only tinker with dosages and tweak products and strains but do it without the approval and sometimes with the indifference of those Powers That Be. Just the other day at The Neurologist's office, after suggesting for the 5 millionth time that I consider the VNS, The Neurologist said, I know you really only like to do the natural thing, though. It was tiny, but it was a sting, and given how difficult and complex this whole medical cannabis journey has been, I couldn't help but feel the great extent of my tiny little mother mind.™ The Powers That Be are going to do things in the way that they've always done them, though, so in the absence of real partnership, we're going to do it on our own. It's highly individualized. Ironically, though, the scrim between Sophie and me is probably the single most powerful help I get when I'm faced with crisis, and it works both ways. I know when she's comfortable, and I know when she's not.

THC, baby.

Sunday, September 4, 2016

Calculated Waiting: On Consulting Chinese Oracles

I'm pretty sure most people think me crazy to regularly and confidently consult the I Ching for answers when I am stumped by life's assault. I say assault because that's what it feels like, sometimes. Life. The seizure life. Epilepsy life. I've delved into the Chinese oracle for just about thirty years, ever since I took Chinese literature and language classes in college and learned to ask a question, throw the coins and interpret the answer using my copy of Wilhelm and Bayne's Book of Changes. I also use R. L. Wing's The I Ching Workbook to clarify and simplify the reading. The workbook says in its introduction that

the search for a solution to the mystery underlying the constant motion and change in the universe has spawned both the science of physics and the earlier science of metaphysics. Physics attempts to express mathematically the physical laws dominating the universe. Metaphysics attempts to express mathematically the effects of these physical laws on human affairs...
The tao literally means the way or gate through which all things move. To move with the tao is to be in a state that Christianity refers to as "grace." The Chinese philosophers were fond of comparing taoist behavior with that of water: It flows onward always. It penetrates crevices, it wears down resistance, it stops to fill deep places and then flows on. Always it holds to its true nature and always it flows with the forces in the cosmos.
Although the tao implies the path of least resistance, it is often a very difficult path to accept and follow. In following the tao, the individual can find his place in the cosmos and harmonize with it. At this point he can exercise true free will as he makes real decisions based upon real possibilities. Here "The Book of Change" can illuminate the individual by revealing immediate tendencies in the cosmos.

So what does all of this mean to me? Well, even after twenty-two years, I find myself in a sort of suppressed panic (it used to be overt) when Sophie goes through downturns like she seems to be in now. I won't belabor how difficult it is to watch her have more and bigger seizures than she's had in years. I feel terrible for her and, as always, helpless to fix things, figure them out. I call all my wisest friends, do what I call my Grand Rounds, and pick their brains. I lie next to Sophie and place my hand over her head and allow myself to go absolutely still and calm. I imagine some kind of innate healing power in my fingers, not mine but rather the universe's, and I coax it out. I know on some level, though, that there is no fixing or figuring and that I have to find this small and still part of myself where, if I abide there, with that, something will unfold. I wait.

This has always been true for me.

Today, I asked the I Ching how I should do this, how I should remember this place, this small still part and how I should get there. I rolled the coins six times and drew out the fifth hexagram.

Called Hsu, the upper trigram is water over heaven, and the lower trigram is fire over lake. The translation of Hsu is Calculated Waiting.

Have I lost you? I don't have the time or inclination to really explain all of this to you, but know that the principle of synchronicity (which the great psychologist C.J. Jung explains in the forward to the Wilhelm/Baynes edition) is at work once again. If you are skeptical, so be it, but I gently suggest you try it for yourself and see what happens.

Here are a few lines that jumped out at me from the reading that I take quite seriously:

A period of CALCULATED WAITING must pass before the cosmos can address itself to your needs. Many areas are undergoing significant change. 
That which you desire is caught in this change. In essence, it is a dangerous time, since the elements involved are not directly under your control. You may be facing some kind of threat or awaiting the outcome of a decision that could greatly affect you. If you worry about it you will grow inwardly confused and succumb to chaos and fear. You will waste valuable energy through agitation. When the time does come to act, your judgement may be impaired.
In order to attain your aim, you must wait to act until circumstances are in your favor. Inwardly bide your time and nourish and strengthen yourself for the future. Through careful observation attempt to see things without illusions or fears. Face the facts. If you are aware of your shortcomings and advantages, you will know what to do when the time comes. Ultimately you will meet with success.
The time of CALCULATED WAITING will put your confidence to a test. It is now that you must make a show of confidence. Do not express your doubts about the past or the future. Indulge totally in the present. Keep your thoughts and words on a positive note and maintain an assured and cheerful attitude.  

They also give me a kind of preternatural peace.



Thursday, September 1, 2016

Tending My Three Chickens

The Unknown Level of Dante's Hell: The Neurology Clinic

I couldn't possibly not mark The Quarterly $475 Reflex Check with The Neurologist, could I, even though the one yesterday was generally pretty unremarkable? I took the requisite photo in the Conquest waiting area, where I get my usual chuckles. For new readers, I loathe the medical/war metaphor in all its forms, and the fact that big, generous financial donors get their name on the wall as latter day conquistadores just basically brings out the cynic in me.


The big hair in the nest-like foreground of the photo above, where we stood in line to check in, is indeed Sophie's. She sat impatiently for quite some time, humming and shifting and drawing disapproving stares despite the fact that not many people hanging out at the Neurology Clinic at a major Los Angeles clinic are -- well -- free of all disease and affliction. I noted some quick look and look-aways, some look and look and look and look and looks (#don'tstarepaparazzi), some kind yet pitying looks and then, thank the abundant universe, a look and a smile and a hello! The Neurology Clinic is actually a pleasant place in that the people who work there are kind and efficient, and Sophie's Neurologist takes a whole lot of time with us and is sensitive to nearly all my needs and desires. Yesterday she even asked me if I had Caregiver Burnout, and as a response I spontaneously combusted leaving behind only the dark stain of my toes in the footbeds of my pale blue metallic Birkenstocks. That The Neurologist can't and hasn't ever really helped Sophie's seizures is just a matter for me to file away in the giant cabinet of my tiny little mother mind™ and try to remain sane in this, the twenty-second year of refractory epilepsy. Let's face it, though, hanging out for a couple of hours talking about seizures and The Mysterious Apocalyptic Friday Last Week, as well as the goddamn vagal nerve stimulator (always brought up by doc, always dismissed by me), the amount of rescue rectal valium we should try in the future, and a wait at the lab to get blood drawn, followed by an hour through Los Angeles traffic, is not an afternoon from which I can draw some jolly insight. Humor me if I sound resentful.

Here's what I'm grateful for: the fact that Sophie has recovered quite nicely from The Mysterious Apocalyptic Friday last week, and that when I get home I have my two very delightful teenaged boys with whom to laugh, converse and enjoy.

Here's something funny.

The Brothers have been extremely helpful to me the last couple of months. I bought a small gas grill at the hardware store, and they've both been terrific at preparing chicken or steak or peaches or zucchini on it, much to my delight because I hate grilling. What they're not so good at, though, is dinner conversation. There's generally a lot of bickering about who does what to whom, and I honestly don't remember even a minute or two in what seems like years that anything truly interesting or stimulating was shared. I know some of ya'll think I'm a saint, but some of you know my true colors, and I have had moments at the dinner table listening to them where I fantasize about pushing back my stool, standing up and announcing that I'm leaving. For good. That I can't take the idiocy any longer, that I need to discuss Russian literature, or The Wire, or the subtle sexism directed at Clinton. Even as I fantasize, though, Oliver comments upon the chicken that Henry has grilled that night:

My bicep would be easier to cut into than this chicken.

Henry answers:

You're an idiot.

Sophie hums, picks up her cup, drinks by herself and then flings it across the room, even as I'm on my way out the door.

*I despise colloquialisms like anyhoo but enjoying using them in jest. This is an approved message for new readers.

Wednesday, August 31, 2016

When We'll All Go Together

Channel Islands

And I will build my love a tower
At the foot of yonder mountain
And visit by the hour
From a lonely wooden tower

Van Morrison, from Purple Heather

That summer when I was still a girl, more offering than sacrifice, the boy I loved lived in an apartment in a suburb called Druid Hills. Putty colored buildings, mosquito-thick air, Georgia green, no Celtic magicians but a couch in a room where I lay while he took a shower, the sound of water behind the summertime has gone and the leaves are gently turning. I've always loved that song, will you go and we'll all go together. Solitude, the intense loneliness of new love, the piano chords singing of ends and gos.

This weekend I had carnival dreams. I kicked up my legs, hung upside down and swirled breath in my throat then out and over the tops of bars into sky. I slept. He said, You need this sleep. You are safe to sleep and I have, I had no memory of anyone ever saying that to me. You need this sleep. You are safe to sleep. Everything.

What does Drumpf mean when he asks to make America great again? What do any of them mean -- the man in the silly hat with the big bill, the couple in the Cadillac in the parking lot of the Harris Teeter in South Carolina with the semper fi and the sign:

M A K E  A M E R I C A  G R E A T  A G A I N.

Again is the operative word, I think, or maybe it's Make, yet neither seems right and much less left.

Back from a weekend away, I was shoving my small suitcase behind a chair in my room this morning, and a little book, a pamphlet, really, fell out of the bookshelf by the chair, fell out and lay at my feet. Let America Be America Again and Other Poems by Langston Hughes with a preface by Senator John Kerry.  I think I bought it when Kerry ran for President, when he called for inclusivity. That election, twelve years ago, seems almost quaint now. The book has a navy paper cover with silver type. Round water stains spot many of the pages, one dripping, bleeding onto the titular poem. Hughes wrote the poem in 1938.

Here's a bit of it with a link to read the rest:

Let America Be America Again

Let America be America again.
Let it be the dream it used to be.
Let it be the pioneer on the plain Seeking a home where he himself is free.

(America never was America to me.)

Let America be the dream the dreamers dreamed—
Let it be that great strong land of love
Where never kings connive nor tyrants scheme
That any man be crushed by one above.

(It never was America to me.)

O, let my land be a land where Liberty
Is crowned with no false patriotic wreath,
But opportunity is real, and life is free,
Equality is in the air we breathe.

(There's never been equality for me,
Nor freedom in this "homeland of the free.")

Say, who are you that mumbles in the dark?
And who are you that draws your veil across the stars?

I am the poor white, fooled and pushed apart,
I am the Negro bearing slavery's scars.
I am the red man driven from the land,
I am the immigrant clutching the hope I seek—
And finding only the same old stupid plan
Of dog eat dog, of mighty crush the weak.

I am the young man, full of strength and hope,
Tangled in that ancient endless chain
Of profit, power, gain, of grab the land!
Of grab the gold! Of grab the ways of satisfying need!
Of work the men! Of take the pay!
Of owning everything for one's own greed!

Read the rest here

Saturday, August 27, 2016

like every lark who lifts his life

Yesterday morning, Sophie picked her cup off the table and,  just like that, began drinking. I'm not sure what happened over the past week, but I really was thinking that the regression was the new normal. I even bought multiple Honey Bear bottles with straws in them on the internets on the advice of another special needs healthcare mother.

Sophie also looked directly into my eyes, and I could swear she said What kind of shit was this past week? 

Then, like the phoenix, she rose up leaving me, a pile of ashes.

The picture above is Sophie with former NFL football player and now medical marijuana spokesperson Eben Britton. Ya'll know what I think of football but -- well -- ummmmm, hmmmmm, yeah. He's a writer and passionate advocate for medical marijuana. This was a Realm of Caring/Faces of Cannabis event with one of my heroes, Ray Mirzabegian spearheading it with the incomparably talented Colorado photographer Nichole Montanez.

She did not take these pictures -- I did, and I was suitably flustered.

Would you like another one?


It's my 53rd birthday today, and my friend Chris sent me this poem, one of her favorites and now one of mine. It's by e.e. cummings

Wednesday, August 24, 2016

Violins and A Sodden Bouquet of Carnations

Horizontal Curl

I'm loathe to tell ya'll about making sure Sophie gets enough to drink and how it gives me agita or even what might be mild anxiety attacks. I don't know why she can't purse her lips and suck on the cup. She's either forgotten how or bruised something or maybe it's the after effects of the eight grand mals or maybe it's the wind. I'm not prone to anxiety attacks, but I suppose an accelerated heartbeat, feeling of doom and shallow breathing constitutes one, as does the constant pricking at the eyes of tears. Sophie has had no more big seizures other than when she woke up this morning, but that one was quite mild and nothing to worry about. I've girded my loins, thrust off the I'm sick of this shit except when I look deep into hers and she is totally saying I'm sick of this shit, so I say, Yes. Me, too. Then I place the violin under my chin and make a grand flourish with the bow before playing us an appropriately plaintive tune.

I can't get this poem by Laura Kasischke out of my head. I have a book of her poetry, but this is a new one. It's in The Kenyon Review which I receive for free because I submitted something to be published and was rejected. The reason why my piece was rejected was because they publish poems like these. I know it's a long one, and I don't know why I am so drawn to it, but maybe it's because there are lines that seem lifted from my own experience, particularly my experiences in the last century even millennium in a small house in a suburb called Sylvan Park in Nashville, Tennessee. I have no idea either why that happens, how a poem or a piece of literature written by a stranger is pulled in tendrils from your own brain and set down in another century to be read on an afternoon when you'd just as soon hear violins.

The Whole

The surgeon peels the man
away from the man
to get a look at the whole
throbbing thing of him. The slick

little change purses, the seaweed. His
featherless birds
moistly dreaming. The rubied globes, but also
the mossy blades and edges. The rotting branches hanging
low with soggy leaves. And then

one velvet tail curled around a pulp-pink stone, right
next to the fetal totalitarians, their shallow breathing. The sticky
eyelids of a forgotten kitten. And that girl at Woodstock — too
young to be there, it seemed — lost

in the rainstorm in the dark among the demons, so that
the faster she ran the faster the tentacles sprang
out of the mud to snag her ankles. Her

skinny thighs, slippery with blood and spit. The rose

bloated in the bowl at the center of the great-aunt's table.
A cockroach crushed beneath the bridegroom's heel.
A pearl fallen off the wedding dress, swallowed by a baby girl.
The stippled button, snipped from the suit coast of the eldest
son in his coffin, pocketed by his brother. Then

the shameful, rubbery secret at the center of all of us, which
for this man long since slipped into the gut of an iridescent
fish (faceless) floating
here now in this thickened ocean between

today's patient's gray-eyed tumor (eyelashed, blushing) and
his liver, mucus-gleaming. The whole of it

just trying to be polite. As when
the in-laws would arrive on Saturday mornings, unannounced, in
their church clothes at one o'clock in the afternoon while we
were still sleeping off the night before. The door

opening very wide ("Hi!") as if none of it
has come as a surprise. Because

nature simply couldn't figure out another way
to make us, frankly, there being
so many things that no one wants to see.
The gallbladder, for instance. The spleen. The

intestines gathered as
a sodden bouquet of carnations some days, and
a toiling nest of shining snakes on other days. Or

the cook in the kitchen pinching the skin off the surface
of the scalded Hollandaise
with his filthy fingernails.

Oh, the waitress knows, and ladles the sauce over
your eggs Benedict anyway. And
the surgeon knows.
Sews you closed.

Laura Kasischke

Monday, August 22, 2016

Seizures and the Full Moon

I realized this morning that I hadn't posted a follow-up to Friday's dire post about Sophie's seizure clusterf*@k. I expressed my gratitude on Facebook toward all those people who sent us such loving and encouraging words, but I neglected to do so here, so thank you, thank you, thank you for buoying me. Sophie hasn't had a day that bad in a couple of years, and I have no idea what prompted it. I have several friends in the seizure world whose kids had particularly difficult days last week and over the weekend, too. We all did the dance that I alluded to in my last post, and we all, in our weak attempts at control, tried to figure out why. 

Was it the full moon? Possibly, as many of us are convinced that full moons exacerbate seizures despite there being no "scientific evidence or correlation." The fact that our kids seize regularly and more violently during full moons is generally reduced to anecdote by the great and almighty Science Community. We of the tiny little mother minds™ are apparently just howling at the moon in between wiping our children's brows, preventing their limbs from banging into furniture as they seize, agonizing over whether or not to administer rectal Valium (because the after-effects are so awful), syringing liquids in them because they've forgotten how to swallow between the seizures and the drugs and weeping on the sides of beds at the goddamn relentless of it all.

So, Sophie is home from school today, recovering. I hope. She is refusing liquids -- or not exactly refusing but rather having difficulty taking them. She reaches for her sippee cup and brings it to her mouth but doesn't seem to remember how to suck out of it or how to swallow other than in gulps. I am, basically, force hydrating her, dropping 1 ml syringes of liquid into her mouth and rubbing her cheeks and throat. Last night at dinner,  I compared myself to the British police force-feeding the Irish Catholics and suffragettes. The boys were horrified. Every now and then, the instinct to purse her lips seems to come back, but then she flings the cup away. I've resorted to looking in her eyes and threatening the hospital and IV liquids if she doesn't get it together. This is, of course, in my mind. I don't actually say it. People love to say that extreme parenting teaches you to not sweat the small stuff. It's been my experience that the small stuff is often what breaks you, and this weird liquid strike has the potential to break me every single moment. OK. I broke and wept this morning after getting 4 ounces into Sophie and wondering for one impossibly long moment whether she had permanently forgotten how to drink and swallow. It's happened before, though, so I'm hoping that she'll regain the skill as the drugs leave her system and things calm down with the waning of the moon.

My friend S who is no stranger to extreme parenting (and far more extreme than I despite her son being less than a third of Sophie's age) gets the grand prize of cheering me up the most.  When I shared that my tiny little mother mindin its dogged attempts to control the situation, believes that the full moon might be the cause, she revealed that her son had had a brief and unusual seizure with the full moon but had never heard of that theory.  Here's a snippet of our texts:

But her best comment -- the one that released me from my angst and made me laugh long and hard was this:

We both agreed that the whole thing is particularly frustrating because we -- well -- love the moon.

I'm a little giddy from the loss of sleep and Force-Feeding of Liquids. Can you tell? Saint Mirtha is here, though, to relieve me, so I'm going out with Oliver. Thank you again for all your love and support. I could never, ever do what I'm doing without it.

Saturday, August 20, 2016

My Tango With The Dark Side

Sophie had a hideous day yesterday and suffered through multiple tonic clonic (grand mal to the uninitiated) seizures. I have no idea what caused the downturn, and so far today she is much better -- basically sleeping off the drugs. I gave her Diastat (rectal valium) and extra cannabis.

Last night I had some full moon thoughts, though, did some dancing with the dark side in the lead until I was bent backward, his hand bruising my hips, my hair and arm trailing the floor.

How much can a person take? They will do nothing but pump her up with drugs in the hospital and to what end? Why is there no one to turn to during these times, a professional that I can trust? When has there ever been a professional that I can trust? 

When released, I cried on the edge of the bed with my head in my hands because I'm sick of this shitty dance.

If the dance were a tango, imagine me quickly turning my head here, swiveling my hips and leading the dark side in another direction.

Sophie can take a lot. She will continue to take it until she can no longer. I have been traumatized over these past couple of decades for good reason and have a unique constitution that is repelled by the practice of traditional medicine. I do not want hospital intervention for my girl. 

I sat on Sophie's bed, brushed the hair from her forehead with my hand and murmured soothing words to her. I told her how much I loved her. I dissociated from the terror by acknowledging and then inviting it to stay. I called a friend and told her that I was afraid.

It's amazing how terror dissipates when it's acknowledged, when I don't push it away.

Yes, I am afraid that Sophie's small body won't be able to take these bad days. Yes, I am afraid that she will die.

Her small body may not take these bad days. She may die.

The thing is, her small body took that bad day. She is very much alive. Not because of my thoughts, of course, but because of the dance, her own dance, the one that I can really not control, even as I dance along, the one that I can only love.


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