Anger and Scythes

Illustrator Micah Caudle, seen on Pediatric Cannabis Support

I'm no stranger to anger and have perfected the art of the Tongue Scythe over a lifetime and particularly during the last 23 years.  During this time of Terrible America,* when dinosaurs run shit, as my friend Allison Ray Benavides noted today, my anger, exhausting itself, is inexhaustible.

Attorney General Jeff Sessions announced today that he would be rolling back the Obama Administration's "hands-off" marijuana federal guidelines. You can read about it anywhere on the internets, and the good jesus lord knows I've talked enough about cannabis medicine for the past five years that even the tiniest of your tiny little mother minds™ knows that it's a plant that not only improves lives but also saves lives. You also know that many of us have been working our asses off as activists to make this medicine accessible to everyone in this country, that we've been fighting ignorance and stupidity and greed and power and have made incredible progress. 

Jefferson Beauregard Sessions, a dripping moniker for a man who I could cut to pieces with my tongue.

Cue anger and the scythe.





We can all sit around and throw out the reasons why the AG has made this announcement today:

1. Jeff Sessions is a racist who has a vested interest in the Profit Prison business. Generations of men -- primarily African-American -- are incarcerated in these prisons.
2. Big Pharma wanting the whole damn pie, working their tentacles around literally every single aspect of the cannabis industry, including the government
3. Jeff Sessions is a willfully ignorant fool who has never bothered to read anything of scientific value about cannabis, is unaware still that cannabis is not a gateway drug and has no interest in the lives of tens of thousands of people who are helped by it as medicine
4. It's a great diversion from the other shit going down
5. It's a great way to make the big liberal states squirm

but it's probably much simpler than any conspiracy theory. Jeff Sessions and the POSPOTUS and the majority of the Republican party are hell-bent on undoing everything that the Obama administration did just because they can. 

Where does it end? When does it stop?  I'm going to keep raising my voice in anger and frustration but also with honesty and truth and compassion. I'm raising my voice in anger against the lying, greedy motherfuckers who are running this country into the ground and against those who support them, even still.

You know who you are.

Shame on you.


#RESIST

* The name Terrible America is the poet Rebecca Loudon's genius

The Samsara of Healthcare

I was scanning through some old posts from a few years ago and noticed one that is particularly relevant -- STILL -- to today. It has to do with government and entitlements and the ongoing threat we face from Republican economic policies and a culture that is all too willing to sacrifice the vulnerable while exalting the already fortunate.

I don't know what to do about this and feel not so much defeated as overwhelmed with the ongoingness of it. I'm currently working with a health insurance broker trying to figure out our 2018 health insurance options as our current plan raised our premium by 39%, making it unaffordable. The capitalists love to talk about "consumers" going "shopping" for health insurance, and "competitive rates," etc. -- all that market talk, reducing us to numbers. I can tell you that scrolling through plan benefits, trying to figure out what coverage would be for Sophie's various needs, reduced me to tears, and I'm no wimp.

I maintain that access to affordable healthcare is a right. I maintain that we shouldn't be looked on as consumers when we access healthcare. I maintain that shopping for healthcare insurance is ridiculous, that despite my college education, formidable intelligence and decades of experience navigating all the systems of care, I am literally overwhelmed by it.

What, really, do I know with my tiny little mother mind™?

If there's anything to substantiate the Buddhist notion of samsara, I guess it would be this.

Here's the post from a few years back, and the article that I referenced in the first paragraph could just as easily be replaced by any number of articles and notices in today's newspapers regarding the threats to Medicare, IHSS and SSI under the current Republican tax reform proposals:



I read this article this afternoon as I languished, a bit sick, at home. For the record, I did do some part time work and home-schooled Oliver in American history and writing. The article was titled Aid to Disabled Kids Surpasses Welfare and states that the amount of federal money going to disabled kids through Supplemental Security Income programs has surpassed traditional welfare programs. You can imagine what this means. There will be people (conservatives) talking about corruption and those who milk the system and rely on government benefits, who don't use their bootstraps properly, who go on vacations when they find out they've qualified for disability and who are otherwise, losers. They will claim that the increasing numbers of children diagnosed with mental health issues, ADHD and other disabilities should actually be parented differently.

There will be people (liberals) blasting the conservatives for once again targeting the vulnerable, blind to white collar corruption and to military expenditures and waste that probably surpass the GDP of most second and third world countries, much less welfare and SSI expenditures. They will talk about the shrinking middle class, how the poor, truly cut off from welfare as it was once known, depend on SSI to even make ends meet.

What you probably won't hear, though, are the voices of those who benefit from SSI programs, many of whom are, literally, without voice. You won't hear about how difficult it is to actually get the benefits, how much education you have to have to parse out the requirements, and in the absence of education, the sheer stamina and persistence  to make sense of the paperwork, to navigate the system, to continue to care for the child with disabilities, to plan for her future with or without you. You won't hear the voices of those who have to continue to make a case for needing the money each year. You will hear that these people are working the system, making up disability so that they don't have to work, that their numbers are growing and America will go bankrupt dealing with them.

First of all, you know that I've a liberal voice, and my voice also happens to be Sophie's voice, since she doesn't have one of her own. Sophie began receiving SSI benefits monthly when she turned 18, the bulk of which I use to pay for the huge drug co-pays that her insurance company doesn't cover, any other medical treatments that her insurance company doesn't cover, her diaper wipes (I pay for her diapers with my own money even though they're covered under MediCal) and various toiletries, occasional clothing and apps for her iPad that she uses at school. Last month, I used part of the money to help pay for her two weeks at communication camp. I realize that some of this is luxury -- she could sit at home in her stroller (also partly paid for by SSI), next to me at my desk as I do my part time work instead of going to camp for three hours. Since I've never found a dentist that provides adequate dental care under Medi-Cal (Sophie receives dental insurance under Medi-Cal but none through our private insurer), I chose to continue to see our family dentist. It's expensive, and in order to keep Sophie's mouth healthy and because it's very difficult to brush her teeth adequately, we pay out of pocket every three months for a cleaning. The SSI money helps with that as well. Sophie's needs are met with a combination of government funds and those earned by her father and me, as well as generous donations toward her care given to us by my parents. I know that there are many, many people out there like us, making ends meet, not abusing the system and grateful for every bit of help -- both private and public. I know that without the combination of funding sources, many of us would have to resort to going into debt, to living far more stressful lives than we already do and to turning our children over to institutional care so that we, their caregivers, can try to find full-time jobs.

I understand that the system will always have corruption, and that some people will take advantage of that system, lie and cheat and steal in order to get something for free. I understand that part of my tax money is going to help the liars and the cheaters and the thieves, but I have a feeling that the vast majority of those that use these funds are doing so responsibly and because they very much need them. I understand that part of my tax money also goes to fund bombs and arms and war apparatus, even if I don't support those wars. It's a sort of price I pay to live in the country that I live in, a democracy where I supposedly vote for the representative that best works in my interest. I understand that people (and I know some of these people) who have millions of dollars but who are also veterans continue to collect what they're "owed," and while I believe that is pretty low-brow, even repellent, I also believe that my taxes go toward far more veterans who, after serving their country, are out of work, homeless, mentally ill, permanently injured or otherwise in need of them. For every Mitt Romney pumping money into tax havens or writing off dressage horses, there are countless businessmen and women getting into their cars and going to work, collecting their paychecks and paying their taxes.

What's the point of this post? Hell, if I know. I guess reading that article sent a frisson of fear into me. The fear is that the difficult job of caring for a person with disabilities in this country will get even more difficult. The fear is that this "difficulty" is really just a cultural construct -- that living in a nation that exalts individual responsibility to the exclusion of community makes my daughter's value recognizable only in dollar terms. The fear is the knowledge that she, and millions like her have to constantly prove their worth. I have certainly been proving her worth for the past nineteen years, and I suppose I'll have the stamina and grit to continue to do so, but damn. It's difficult.

There's Everyone and Then There's Us*

Me, reading circa 1974

The last time I posted the photo above was many years ago, and it was basically yet another post where I rhapsodized about my general bookworminess. However, such was the confusion around the photo and the object in the upper left corner that I had to then post this one:

The title of the second post that accompanied the second picture was "Let's Talk About the Gun," and as of this moment, it's been read 31,907 times and is the fifth most "hit" post on my blog. Counting this one, I have 4,103 published posts and more than 4,000,000 "hits" in total. It's all about "the gun," you know, which is actually not a gun but a telescope, a big ugly brass and veneered wood one that sat in my family's den in a Tudor house on a large wooded lot in a subdivision in suburban Atlanta in the early seventies. I'm not sure what there was to see out the back sliding glass door that slid open onto a wooden deck that hung over a grassy yard and woods, but I'm not sure either why my hair looked like that, why I wore a red-checked maxi jumper or why I was so thin then yet so ample today,  and god, why can't I read like that now, so immersed and lost? I'm even more unsure why so many people search for "let's talk about the gun," or "talk, gun" or just plain "gun." Then again, the most hit post of mine is about paper cranes with more than 75,000 hits so I guess you could also say that more people look up paper cranes than they do guns.

The telescope is meaningful for me today both because we're all getting ready for The Great Eclipse, and because I learned that there are hundreds of armed militias everywhere in these Disunited States of Amerikkka who are prepared or plotting to take back their country from brown folk and those who enable them. Are you catching my drift? Drift. Yes, I can drift. Even though southern California isn't on the path to see the moon completely eclipse the sun, it's going to happen, and there's something going on in the atmosphere in general that's causing a ruckus in the brains of the sensitive. Sophie's had an unusual number of large tonic seizures over the past week or so, but she recovers from them quite quickly and has none of the co-morbidities that we generally see during other seizure clusterfuck times. I realize that Science has found no correlation between seizures and moon cycles, nor is there established causation, but we in the epilepsy community -- the refractory epilepsy community -- those of us with the tiny little mother minds™ know very well that something goes on with the moon and the brain. I've heard of four children in my community who've died over the last week. That I can type that sentence out amidst all this seemingly idle chatter is the reason why I'm writing this post. Sophie is particularly alert in between these seizures with a penetrating eye gaze and smiles, seemingly sharpened, perhaps tensed, maybe even waiting. Aren't we all though, these days? Waiting? Not just for the eclipse but for what else and what more as we watch our country diminished by louts,  our heads whiplashed, events waxing and waning (like the moon) willy nilly with just about everybody at everybody's throats. I, personally, feel muzzled by Identity Politics (the Tina Fey backlash, for one), and am both earnest and defiant. I feel like I'm dancing on the ridge with the carnies and Death in a Bergman movie,  could perhaps be walking toward Guido in 8 1/2, one of his women, perhaps in a dream or the woman in Beckett's Happy Days, buried up to her waist in sand yet cheerful and getting on with it. Children are dying and Sophie is seizing, the moon will blot out the sun for some but not all, we are to be serious with intent, but (thank you, Chris), isn't life a cabaret and all that? Love is the answer but what if you live the questions?




Is that a gun or a telescope?

There's everyone and then there's us.

















*The working title of my book in progress

Pirouexiting IEPs

I want to tell ya'll about the day I had up on a bluff at Point Dume in Malibu, but first I want to tell you about the funniest question I was asked by one of Sophie's teachers yesterday. It was Monday morning, about 8:30, and I was doing the usual morning thing with Sophie at home which calls for a combination of the physical strength of an elephant, the body dexterity of a circus performer and the patience of a -- let's see -- praying mantis. I'm not going to give you anymore of a description than that, so let your imagination take flight, especially those of you who've been reading the exact same shit for the nearly nine years I've been writing the old blog.

Anyhoo.

The teacher* called me to ask why I wasn't at Sophie's "Exit IEP," and I said, What Exit IEP? and he said, Didn't you sign the paper letting you know the date of the Exit IEP was April the 3rd at 8:00 am? and I said, Um, no, I never received a notice about an Exit IEP and actually thought this would be the first year in two decades that I actually wouldn't have to perform my high-wire act at the IEP! (actually I didn't say that last part but I thought it with my tiny little mother mind™because you know -- really? an EXIT IEP?**) -- and he said, The form should have been in her backpack a couple of weeks ago, and I said, Well, I never received a form, and thought to myself with my tiny little mother mind™that it was weird they hadn't called me if they never received the signed form but remember I was busy with my own circus act at home which involved the elephants, the trapeze artist and the praying mantis, so I just said hmmm and nooo, and contemplated a pirouette (muscle memory every time I hear the acronym IEP), and then he said what is probably the greatest thing that I have ever heard uttered in the nineteen year history of the Sophie Girl IEP (and oh, lord, there have been some doozies), and perhaps the greatest thing ever uttered to my Caregiver Self and that was this:

Maybe one of your household staff removed it from her backpack?

Reader, need I say more?


I think not and will tell you about Point Dume and the whales and the flowers and the turquoise water and the television series being shot on the beach below which included airplane crash wreckage and actor/survivors and then later the Topanga Ranch Motel pictured above (which subs in for my "estate") at a later date.

*For the record, I love and admire Sophie's teacher, and he will be sorely missed when we are hurled off the cliff in May or shot out of the circus cannon and over the Pacific.

** For the record, I told him FOR THE FIRST TIME IN NINETEEN YEARS to just do what he had to do for the Exit IEP and send me the paper to sign. I have always wanted to check that box on the IEP notice that my household staff neglected to give me that says, "I am unable to be at the Individualized Education Meeting but hold the meeting without me anyway," because -- well -- really, what difference would it have made if I hadn't brought in those doughnuts every year, wore that pale rose-colored leotard and chalked my hands before doing the most perfect pirouettes on the wire above the earnest heads of the Powers That Be?

It Never Rains in Southern California

Well, I guess I should say Happy President's Day!

I posted the following on my Facebook page for an Andy Warhol fifteen minutes and then decided to take it down because it's so vile. Someone I know asked me whether it was real. Yes, it's real. It's true and not alternative fact. It's a transcript of 45's comments from ten years ago, and even as I acknowledge my role as contributor to ugliness, it bears repeating because we're all responsible on some level. I still can't believe that 45 now represents all of us on the world stage.

Let's move on.

On Saturday night, I attended the first meeting of our local Indivisible group. We're called Active Empathy, and we're intent on active resistance to not just 45 but also to the extreme right Republicans in power whose agenda doesn't represent us or -- in some cases -- the majority of people in this country, in addition to its undoing progress to protect our environment and ensure equal access to our healthcare and threatening our first amendment rights. I'd have to make this a Faulknerian sentence if I kept typing everything that's under threat, but our intentions include flipping the legislature with methodical action. The group that attended the first meeting was diverse in age, race, religion, sex and sexuality, a mini-Los Angeles. We introduced ourselves and told the others what issues we were most interested or concerned. The range was wide. Some tears were shed and some expressed anger. Many attendees are originally from the "flyover" states and perfectly aware that not everyone who lives in those states condones some of the more egregious behavior of 45 or the conservative platform. Many expressed the need to be self-aware, to at least acknowledge our part in further dividing the country with our anger and sometimes condescension. Others had more of a screw that attitude, believing it is going to take the adoption of Tea Party tactics to be most effective. Here's the beautiful logo created by one of the founders of the group. Active Empathy is the name that's above the following:

We're not a moderate group, which brings me to the other thing I wanted to write about, and that's the personal war I have going on in my tiny little mother mind.™ I generally use the tiny little mother mind™ expression to describe the relationship between me and the Powers That Be in Neurologyland, how over decades I've learned just how hegemony works. The analogy has some use here, too. What does it mean to be educated? What does it mean to be an elitist? When did the open derision of intellect become acceptable? What does it mean to be moderate? Why is moderation a virtue? Why is moving to the center a goal? Is that a construct or something truly admirable? Are there certain principles that should not be compromised? What convictions do I have that are immoveable? I don't have the answers. I have a tiny little mother mind™ and some gut instincts, though, that have served me well and that I have to constantly be vigilant to honoring. To help me with this, I've been reading Hannah Arendt's The Origins of Totalitarianism, and it's startling and fairly easy to draw parallels to what's going on today. I'm reminded of my instincts and of honoring them, how difficult it is to do so when I also have to deal with emotions, with a patriarchal culture and values that are more authoritarian than inclusive. There's a good discussion of Arendt's work here, including this choice passage:

“What convinces masses are not facts, and not even invented facts, but only the consistency of the system of which they are presumably part . . . Totalitarian propaganda thrives on this escape from reality into fiction . . . [and] can outrageously insult common sense only where common sense has lost its validity.”

It's exhausting, isn't it?

Let's move on.

I saw the extraordinary documentary about James Baldwin called I am not your Negro. Everyone should watch it and the documentary 13. They're both antidotes to the superficial bullshit that reigns in this country. It rained off and on all weekend here in southern California. Everything is green, so green. I've been reading Ann Patchett's novel Commonwealth and love it. I told a good friend that I haven't been able to get into a novel in a long time, that I remain half in and half out, that that was worrying me because reading novels has been really the only constant in my life (that's NOT hyperbole). I'm in Patchett's story -- totally in. The man I love brought me pink roses, and the boys I love showed me how to take pictures with my new iPhone so that the background is blurred out. How wonderful is that! Here's a picture of the roses using this clever technique and one of the cinnamon bread I baked. The boys I loved showed me the scratch and sniff technique on the phone, too. Just kidding. That IS hyperbole.

Reader, what did you do this weekend?

Tiny Little Mother Mind™ Part One

Tiny Little Mother Mind™, under wraps

I've got two things to say, and they're both reflections from my tiny little mother mind.™

I'm going to break them up into two posts. After reading this, stay tuned for the second one because it has to do with MEDICAL CANNABIS.

The first has to do with the wonderful commentator Van Jones, whom you might be very familiar with as his pre and post-election insights have been sustaining to many progressives. Today I read a good long interview with him in Rolling Stone. It's called Van Jones: Only a 'Love Army' Will Conquer Trump. Here's the thing. I love Van Jones and I love what he's saying. His words have particular relevance to me because I am guilty of spewing my disgust at the current political situation and certainly lumping all those who voted for Drumpf together. I am going to try, try, try to reach out and be more understanding of the varied reasons people voted for this man, however difficult that might be. I want very much to be a part of the 'love army.'

Where my tiny little mother mind™ gets miffed, though, is from this passage:

How do you do that? We're going to do national teach-ins starting very soon – once a week, every week, standing up for the most vulnerable people: Muslims, the DREAMers, Jewish people, women, trans people, black protestors. And once a week, give the whole country a chance to show a whole lotta love – both to demonstrate and deepen a solidarity with those groups, all under one hashtag. #LoveArmy is an opportunity to reassert at a values level.

What are we missing in that paragraph? Anyone? Who's missing? What did my tiny little mother mind™ catch that Van Jones did not, nor Rolling Stone?

THE MOST VULNERABLE PEOPLE in this country includes those with disabilities, particularly those with cognitive disabilities. They are routinely left out of the conversation, as we see in Van Jones' otherwise beautiful, inclusive words,  and while I know this isn't intentional, it's deeply symbolic.

What's coming round the bend with the Drumpf administration and his Band of Billionaires, as well as the usual folks like Eddie Munster et al, is striking fear into every single caregiver of a disabled person that I know and in disabled persons themselves. ALL the systems of care that we rely on, including health, health insurance, scientific research, education, social services, respite, etc. are at risk. These systems of care -- these issues -- help to assert and maintain the dignity and well-being of disabled persons. DISABILITY RIGHTS ARE CIVIL RIGHTS.

I'm not sure what to do about it but keep talking and talking and writing and writing. Will you help me? Will you share this? Will you speak to Van Jones and Rolling Stone and other media outlets that routinely neglect to include the rights of the disabled as worthy? Again, I do not think it's intentional but rather that the disabled have perhaps the quietest voices, if at all, in our country. They are not literally "worth" anything at all -- monetarily. Often they do not have a vote or a voice. Their caregivers are generally exhausted. They have few champions.

This tiny little mother mind™ is begging you to help.

#LoveArmy

Doogie Howser, Sophie and The Tiny Little Mother Mind

One very fucked up EEG

Doogie Howser and I had a good pow-wow over Sophie. The plan is to hopefully get her back to baseline (which is never normal, so don't be overly alarmed by that EEG) with a giant dose of Vimpat. You might recall that we reduced Vimpat because we thought the giant hives were a toxic reaction. Maybe not, though. We also discussed the possibility that when The Evil Insurance Company switched Sophie's hormone med to a generic version six weeks ago, it might have thrown her off and exacerbated the situation. Anything is possible, apparently. We're in a very sophisticated medical building with all the fanciest equipment and greatest minds, including this tiny little mother mind, yet no one really knows what's going on. I am of course struck by how much has changed in that the video monitoring equipment is wildly informative, and I can take a picture of it with my tiny phone, yet little is changed from twenty years ago as far as treatments (the drugs! the drugs!) for Sophie. Last night, in conversation with the doc whose name rhymes with Kevorkian (how perfect, I thought, and unfortunate), I casually suggested in my dark way that instead of asking me what I wanted to do, we should just put a dart board up on the wall with our options and throw darts at it. The Doctor Whose Name Rhymes With Kevorkian looked at me like I was insane but tittered. The nurse, of course, burst out laughing. Later, he brought in a whole stack of consent forms for me to sign, and when I asked him what I was signing, he said it was for the video telemetry, and I said that I wanted to be sure that it wasn't for a hemispherectomy, and he looked startled and I said, I don't really trust you neurologists, you know, and we all had a raucous laugh. This morning, Doogie Howser claimed to be a "believer" in CBD. I told him it wasn't a religion, but I got the distinct sense that he was cool with it. Y'all know the party line. I think The Party really wants to get Sophie back to the control she had on Onfi, Vimpat and CBD but The Line is to "ignore" the CBD. The tiny little mother mind is on it, not walking The Line, as usual. I'll keep you posted.

Sophie is sleeping right now.  As you can tell, I'm ok. Strangely calm which might perhaps be dissociative but could also just be -- well -- calm. 

THC, Baby

Sophie in West End apartment, New York City
1997

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.

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 mind™, in 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.

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 Quarterly Tiny Little Mother Mind™ Report

Someone said this: Science is more than equations or experiments. It is a window to humanity, a quest for understanding, and, often, a way of life. 

I poked raspberries in Sophie's mouth. She's a bird these days, less -like than ready to fly. She opens her mouth and reaches toward the plate, around me, ready for the next and the next. Her father took her to the dentist last week, but they had to leave without the cleaning because she was too rowdy. The strain of cannabis that we're trying and the dosage that we've tinkered with so diligently under the direction of Dr. Bonni Goldstein is helping Sophie. Yesterday, she had her first full-blown seizure in nearly ten days. That's some data right there, a pattern building. It's a fallacy peddled by neurocapitalists that we need more evidence. Here's what's working for us: less pharmaceuticals, more cannabis. Long-term effects are now.

The Quarterly Tiny Little Mother Mind™ Report

I rowed a boat through the shitty today to take Sophie to her quarterly Neurologist Appointment. We disembarked at the valet parking because the regular parking was full, but I had to get the wheelchair out of the boat, assemble it, put Sophie in it and then run through the rain to reach the tower where The Neurologist works. I felt distinctly out of sorts doing this, all grumbly and complaining inside my head about how much I hate this shit, this place, this life -- you know the drill. Twenty-one years. When I got to the third floor and wheeled Sophie past the Neurosurgery Department and then the CONQUEST sign in the neurology waiting room with all the MEGA DONORS MAKING A DIFFERENCE, though, I had already talked myself down. A guy was talking in an extremely loud voice across the waiting room to an older woman who also spoke in extremely high tones. They were sharing stories of misery. They were chuckling. They relaxed me, like magic. I waited in line to check Sophie in. Her wheelchair dripped water. She's a mermaid. The receptionist took our new insurance card and asked for a co-payment. Here we go, I thought. $70! she said cheerfully. I told her that Sophie had Medi-Cal secondary to her private insurance and therefore we shouldn't be subject to the co-pay. You're right! she said and peeled the sticker off the sheet where I'd signed. We waited only a few minutes before her name was called and then were ushered in for The Quarterly Taking of the Vitals. The new nurse rolled the digital blood pressure machine up to Sophie and spoke directly to her.

Give me your arm, please! she said.

I told the nurse that Sophie generally doesn't do things on demand and that she doesn't sit still with the digital blood pressure thingy on so it's impossible to get an accurate reading. I suggested that she get one of the old fashioned kind because that always worked best.

Apparently, I was invisible.

Or perhaps I had already slowly morphed into the body that houses the tiny little mother mind.™

Give me your arm, please! she repeated and then proceeded to wrap the band around Sophie's arm. I made some sort of lame attempt to repeat what I'd told her, but she had already walked away toward a computer where she stood and proceeded to ask me the questions that I wish were gold-plated into The System -- what medications is she on? how much is she on? how much does she weigh? She glanced at the blood pressure machine, frowned, walked over and fiddled a bit more with it. Is her blood pressure normally this low? she asked, and I said, No. She's very much alive, as you can see. She walked out and came back in with the old-fashioned kind.

We saw The Neurologist a few minutes later, a woman whom I greatly respect and even like. She asked me the usual questions -- how much medication is she on? how much have you weaned? how are her seizures? -- and I answered them. She raised her eyebrows when I told her how much less medication she was on, how we hadn't used Diastat in nearly two years, how the CBD and THC seem to be controlling her seizures despite this reduction in medication. I reported that Sophie was having some big seizures in the morning every few days and that I was going to adjust the dosage of her cannabis, but The Neurologist didn't ask me a single question about the cannabis. She asked me whether I would consider a consult for the ketogenic diet or the modified Atkins diet. I reminded her that Sophie tried the keto diet twice, that it didn't work the first time in the dark ages of the last century when she was an infant, and that the second time, in the dawning of the new millenium, it gave her impacted stool and turned her into a ravenous, pacing tiger and me into a traumatized, insane woman. I have no idea whether she knows that I am fond of hyperbole but there was none involved here. The Neurologist did acknowledge that she'd heard that story before, but she still didn't ask a single question about cannabis.

She did lay out on the table the possibility of the VNS. That's the acronym for the vagal nerve stimulator, and I've made it pretty clear about 4,324,569 times that we're not interested as it doesn't have compelling results. That's partly hyperbole and partly not.

IN TA RESTING.

I still really respect and like The Neurologist. I declined the VNS and didn't bother to share any more information about the cannabis. We commiserated about the maddening state of health insurance, and I warned her that Sophie's monthly supply of Onfi could cost me $3500 unless we did all the paperwork to ensure that it was medically necessary. The Neurologist wrote down the 22 drugs that Sophie had already tried, because the insurance company will inevitably insist that she be prescribed an alternative to the Onfi, and The Neurologist will have to make the case that she continue to be on this drug because we've already given the others a whirl. What we didn't discuss is that the only reason she has to be on this drug is because she is addicted to it and the only reason why we are weaning her from it at all is because cannabis medicine is helping her. But those are thoughts of the tiny little mother mind™ and don't need to be shared with the Great Minds of Neurology nor are they, apparently, of interest.

Anyhoo.

Sophie and I got back into our Sexy White boat and rowed through the shitty back home.

I'm here to tell you newbies that it gets easier when you allow yourself to feel the maelstrom of thoughts, the soaked to the skin despair and then watch them float away. Equanimity comes, eventually, even to the most feisty of us. Even to the tiniest of tiny little mother minds.™

Large Gargantuan Doctor Minds™

The Third Circle of Dante's Hell, The Inferno
Gluttons

Today's visit to The Neurologist included the usual bringing her up to speed on the amounts of medication Sophie is currently on, how much of the Onfi we've weaned since the last visit and a couple of jokes about the drug Fycompa (that causes homicidal and suicidal ideation) and the drug Potiga (that causes blue lips and nails). I made the jokes, and The Neurologist gamely laughed. We also discussed the CBD and the THC and how well they're working for Sophie. She even walked in without a wheelchair! The Neurologist exclaimed. Then, apropos of nothing -- or maybe because of the homicidal/suicidal ideation and blue jokes -- she mentioned the Vagus Nerve Stimulator, a medical device that I've heard about since it was first introduced in the late 1990s when two of my friends at the time traveled to Ohio to have one put in their young children with refractory seizures. The various neurologists we've seen over the years bring it up in a sort of lethargic way, so I've never really thought of it as a compelling treatment for Sophie, and I still don't, even with what I learned today from The Neurologist -- that They've made some enhancements, namely an ability to be adjusted in smaller increments. Such is my lethargy, I don't feel like telling ya'll what the VNS is, so feel free to look it up on the Google. My mind wandered a bit when she told me about the enhancements -- toward wondering why mini-vans were first made with only one sliding door and why having them on both sides was such a genius innovation and couldn't have been done in the first place.

At worst, The Neurologist skipped over the extraordinary results of CBD and THC on my daughter. At best, she was doing her job and sharing information, and I'm grateful for that.

I'm going to call a spade a spade. Sophie's neurologist is Dr. Kalayjian. I really like and respect her. She is very supportive of what we're doing and sympathetic, always. She's a good doctor. At some point in the otherwise enervating discussion (remember that word?), she said that Another Neurologist exclaimed the other day, I need more research! I get questions all the time now about CBD, but we just don't have the research! In calling a spade a spade, I'm going to call the Another Neurologist, Dr. Heck. I've known Dr. Heck for a really long time and even sat on the board of the Epilepsy Foundation of Greater Los Angeles with her for a time and at the same table at a gala or two. She never remembers me, but that's fine. She's clearly got a large gargantuan doctor mind.™ It was Dr. Heck who summarily cut off our panel discussion about CBD last February at the Epilepsy Brain Summit. I'm calling spades, spades, when I also name Dr. Hussain as the doctor who also patronized us that afternoon and who continued to do so in private emails I exchanged with him. I believe I reached the point of no return in the email thread when I pointed out that when he was in high school, Sophie was diagnosed with infantile spasms, and that today, twenty years later, as the head of the infantile spasms program at one of the best epilepsy centers in the world, he's still using the exact same treatment (well, now we've got Vigabatrin formally approved despite it causing serious eye damage and then there's The Knife) with the same abysmal results. I might have added that it would behoove him to have a bit of humility, or maybe not. I can't remember because my tiny little mother mind™ had spontaneously combusted in the confrontation with his large gargantuan doctor mind.™

Anyhoo.

Why am I typing this out here, calling spades, spades? As I made my way through the circles of Hell that constitute the USC parking garage, mainly curse words and phrases came to mind as responses to Dr. Kalayjian's comment about Dr. Heck "needing more research." I didn't have it in me in the moment back in the office, distracted as I was by Sophie's formidable strength and drive to get up and out of the joint (no pun intended). To be honest, these phrases might have included if she and the rest of the docs got their heads out of their asses..., and f**k your godforsaken studies, and try looking them up because there are reams of them! 

Reader, I was not directing these ugly thoughts at Dr. Kalayjian, as her head is decidedly on her shoulders, and she's very supportive or at least superfically so. They were directed at Dr. Heck and all the other large, gargantuan doctor minds™. Again, these thoughts only came to me as Sophie and I stumbled through the parking garage looking for our car (I am directionally challenged). When I'd finally found it and situated Sophie in her seat, given her a cold drink and turned on the engine, all curse words flew out the top of my head and what I was left with was this:

Studies? Studies? 
More research? 
How about Sophie? 
Why the hell are you not responding to Sophie? 
Here's your study! 
Here she is!
Look at her!
Pay attention! 
Listen to me! 
Listen to others like me! 
Stop blowing us off!
Stop reporting us to Children's Services!
Stop prescribing multiple drug regimens! 
Be excited! 
Be curious! 
Take notes! 
Follow our progress! 
Take it seriously! 
Don't dismiss us as anecdote!
Open your minds!
Remember that with few exceptions, you are no more intelligent than most of the people caring for their children with refractory epilepsy and in many cases, you are less experienced!
Your field is a dark one, and you do not have all the answers!
You missed the train eighteen months ago, and I'm giving you a chance to get on board! 
Take it!

How We All Do It

M using her vaporizer system for MMJ while an inpatient

Back in April, my friend Heather connected me to her friend S, a Canadian mother of a sixteen year old with severe disabilities. Here's the email that S sent me:

Heather gave me your contact information because we are really struggling with our daughter's seizures right now. She is 16 and previously had been seizure free for 2 years!! Now we have been in status Epilepticus twice in a week that requires massive drugs to stop. It's a matter of time before she is intubated and takes her at least 4 days to recover from. I have heard so much about CBD oil and need to try this. Not sure what resistance I will encounter with her neurologist but want to arm myself with information. I was not even sure I could get it in Canada. I am very excited about this option and would appreciate ANY information you could offer.Thank youS

I responded immediately, but because I am Not A Doctor  and have only a tiny, little mother mind,™ God forbid I should give any medical advice. I referred her, instead, to Realm of Caring, to the Facebook groups and to my Canadian friends who use CBD with their families. I also suggested that she watch the CNN series Weed. 

A few days later, S responded:

Thank you! M. is on Vimpat, lacosemide, clobazem(onfi), and now adding phenobarbital that she had an allergic reaction to 15 years ago. They hope she's outgrown it???!!! So many drugs, each one has its own side effects. Our neurologist today told me he will not support CBD oil because he has no proof it works and is not legal here!!!!! So frustrating. I still will pursue this because I have heard such overwhelming real life accounts of its benefit. I am not sure how to join the support groups. When I  click the links I get a page saying I do not have permission to enter the site. I am super excited to be able to hear Canadian stories. Gives me great hope. How do I join those groups?Thank you. S

I'm sure you heard my giant sigh when I read what her neurologist said. It was probably in direct proportion to how the neurology world perceives my tiny, little mother mind™ and the government views the evils of marijuana or Big Pharma anticipates profit, but I got back to S with what I knew about medical marijuana in Canada (that it's NOT illegal) and then referred her again to the Canadian mothers I know who are using it successfully. I'm not sure what happened next, but about a month later, I got this message from S:

Just wanted to give you an update! I took M to a Cannibus clinic against the neurologist and paediatrician!! They were not supportive - the opposite of that really. I begged my family doctor for the referral. She wanted to put M in the Hospice and pull all treatment. I begged for this saying then at least I know I have done everything. Well we started 17 days ago. We have not had one single seizure in 17 days!!!!!!!! So thank you from the bottom of my heart. Your help has given us another chance at life with M!!! She has had some significant brain injury due to the severity and frequency of the seizures. The only way we can move forward and heal is to get a rest from the seizures. We have that now. Hope it is onward and upward from now on!!! Thank you again for your help and advice.

On June 11th, S wrote this:

Day 35!!!!

Unfortunately, this past Friday, S informed me that M had to be admitted to the hospital because her feeding tube site got infected, and S had to then worry about giving the CBD oil in-hospital. Here's what she wrote me:

We are trying to get her medical marijuana approved to use here in Hospital!!!!! Yesterday a resident asked the team and they said yes. I was so excited until we went to use it. That resident never wrote orders for it!!!! So that's my mission today. She has gone 3 days without it. I will be devastated if she had a seizure because she was not allowed to use it!!!! I hope the oils get established and provided here!!! We are here because M's feeding tube site got infected. We brought her in Sunday and they did not believe she was sick! They were so rude and condescending. By Tuesday morning I had to rush her here in septic shock. They believed me that time. So looks like we are here for a while. Hope not too long!!! This place drives me crazy as I am sure you can relate!!!!

I can definitely relate, although my experiences in the hospital with Sophie were, thankfully, years and years ago. Knock wood three times right this second. S and M are far bigger rock stars than Sophie and I!

In any case, S updated me further:

I got the approval!!!! Can't believe they are going to let me do it in the Hospital!!! They say it is a first!! It seemed like a big deal. They had to take it into their possession and lock it up in their narcotic cupboard. Makes me laugh!!! I have enough Midazolem in my diaper bag to drop a horse but the less that 2% THC product that wouldn't affect a fly is confiscated!!!! Oh well, at least I got approval!!!!! I would love to see the look on the neurologists face if he hears about this!!!!!!

I know some of you think I dramatize stuff, that I might spend too much time writing about the negative experiences of our children with special healthcare needs and not enough time with the positive. I am perfectly aware that there are plenty of wonderful doctors and healthcare facilities all over the world, and I'm grateful for all of them. The reason why I highlight a lot of this stuff, though, is because it can be life or death -- literally and figuratively. It's a literal life and death situation for many of our children. Those of us who parent or care for children with severe disabilities and epilepsy in particular die a thousand deaths figuratively when our children seize. We are traumatized by the condition itself and then doubly or triply so when we face bad care or doctors who dismiss our concerns or who fight our decisions, openly, even as they have no hand to deal.

But back to our unfolding story. You're keeping up, right?

On Friday, S sent me this message:

Yes!! M got her medical marijuana tonight in the Hospital. Children's Hospital!! She is sound asleep and peaceful. It is such an amazing and wonderful medicine for her!! Natural healing power!!!

There's both the literal and the figurative saving of lives. 

I was so excited to hear this that I asked S whether I could post a story on the blog about them. This is what S said,

Absolutely!!!! If M's story could help one person or inspire someone that would be wonderful. I think this is an important time for this era of medical marijuana acceptance. It is definitely something that I believe in and has improved the quality of M's life beyond anything else that has been medically offered!!!

So, there you go. Reader, please share M's story.

We're all connected, and this is how we do it.

Musings on Rejection and Dejection or Drejection

I'm a week and a half away from leaving for three weeks, and I feel as if I'm wandering around in circles. I'm not complaining. I just don't know what to do first. My legs are leaden and my head filled with cotton. I feel strangely dejected despite all the good fortune coming my way.

I pulled a card out of my Poet Tarot deck this morning to see what I had in store this week. I got the Five of Mentors. I consulted the guidebook and learned that key phrases for this card are: disagreement within creative groups, being flexible in my artistic vision, choosing battles wisely.

Here's my advice to you, if you're a writer. Submit your work widely and then chill out. Chill out when you get rejections because you'll probably get a lot. For every ten things I've sent out over the years, I get about eight or nine rejections. Years ago, a literary agent sent a manuscript back to me with the words too sad written on the cover sheet. That was it. Sometimes rejections are wildly entertaining, like the one I got over the weekend from a literary journal named after a body of land with some amount of water around it. This is what it said:

Dear Elizabeth, 

Thank you for sending your work. Unfortunately, "Dreaming of Sex During Acupuncture" is not for us. Good luck with your writing and thank you for your interest in [name of journal]. 

Sincerely, 
the editors 

Doesn't that tickle you? I imagine you're wondering about the title of the piece I sent in, and hopefully you'll read the whole thing one day because I'm sending it back out. I'll keep you posted.




While vacuuming my car this morning, I pulled Frank O'Hara's little Lunch Poems out of the door pocket and opened it up, even as I scraped the dead leaves and grit from the floor. My heart is in my pocket, I read from the poem A Step Away from Them. How perfect is that? My other advice to writers is to read all the time and stash small poetry books in weird places.


Have I told you about my obsession with the Annunciation? Given my estrangement from the Roman Catholic faith, I'm not sure why I find it so compelling, but there's something about a big old angel leaning down to softly tell a virginal woman that she'll be carrying the son of God that knocks me flat. There's all this grace inherent in the gesture, I think. My favorite painting is Fra Angelico's Annunciation, and after visiting Italy for the second time and seeing it, after which I had a disturbing encounter with an epileptic young woman, its significance became all the greater. You honestly can't make that shit up, and I didn't. I did write an essay, though, that was accepted for publication by Slow Trains years and years ago. It was rejected at least five times before being accepted. You can read it if you like.

Anyhoo.



Mary Szybist wrote an entire book of poems about the Annunciation. It's called Incarnadine. Here's one of the poems:

Annunciation Overheard from the Kitchen

I could hear them from the kitchen, speaking as if
something important had happened.

I was washing the pears in cool water, cutting the bruises from them.
From my place at the sink, I could hear

a jet buzz hazily overhead, a vacuum
start up next door, the click,
click between shots.

"Mary, step back from the camera."

There was a softness to his voice
but no fondness, no hurry in it.

There were faint sounds
like walnuts being dropped by crows onto the street,
almost a brush
of windchime from the porch -----

Windows around me everywhere half-open ----

My skin alive with the pitch.

Mary Szybist



Maybe I'm weird, but that just blows my tiny little mother mind.™