Let's Talk Books

I'm on a bit of a reading binge these days -- a sort of defiance of the general zeitgeist of distraction, hysteria and just general shitshow stuff. 

Reading, I've said many times, is my only constant.

I've just started Louise Erdrich's Future Home of the Living God. It's too early to say whether I love it or not, but I'm having a rocky start given the genre. I'm not a person who enjoys the dystopian novel or even fantasy, so it might be hard going. We'll see (or read). I just finished Cynthia Bond's novel Ruby which was lying around my house for many years. It has some amazing lyrical passages in it, but overall I found it overwrought. Obviously, this is subjective, but as I get older I find that I like things stripped down to the essential. Lisa Halliday's novel Asymmetry was riveting for me, a kind of meta-fiction thing going on (shoot me now for even using the word meta) and stripped of sentimentality. I found the story really interesting and sexy and was blown away by the structure and writing. Jesmyn Ward's Sing, Unburied Sing was perhaps the most beautiful book I've read in years -- brutal, spare, lyrical and transcendent at once. If you look over there on my righthand side-bar, you'll see a list of all the books I've read so far this year -- when I glance at it, I'd say that Jesmyn Ward's Sing, Unburied Sing and Jamie Quatro's Fire Sermon were my favorites. Quatro is one of those writers who appears to have been living in my brain taking notes.

Up next, after the Erdrich, is poet Robert Hass' A Little Book of Form and maybe simultaneously Celeste Ng's Little Fires Everywhere. I'm also making my way through a pile of New Yorkers.

Reader, what are you reading?

Cannabis Oil Questions Answered: Tiny Little Mother Mind Report with Stanley Brothers Podcast Update

Each week the tiny little mother mind™ is consulted about various topics related to cannabis medicine. I thought that I'd emerge from my tiny little office and answer a question that I've been asked numerous times during the last few weeks as the news accounts of powerful legislators "evolving" and the FDA approval of GW Pharmaceuticals' cannabis product Epidiolex snowball into one big bag o' dollars and a confused consortium of doctors, incarcerated black people and other tiny little mother minds™ wonder what's up. As you can see by the above photo, I'm wearing my cannabis bindi to augment my tiny little mother mind™ machinations. I have also consulted with Dr. Bonni Goldstein because -- you know -- tiny little mother minds™ know when they need help and ask for it.

What's the difference between Epidiolex and Charlotte's Web Hemp Oil?

GW Pharmaceuticals has long been developing a cannabis-based pharmaceutical for the treatment of seizure disorders. It's called Epidiolex.* Last week, Investors Business Daily reported that the company's stock shot up to a months-long high because of the anticipation that the FDA will approve it for use. You can read about it here.

GW Pharmaceuticals basically grows the cannabis plant and extracts CBD from the plant -- extracts a single molecule cannabinoid and then adds in proprietary terpenoids (that they are not sharing with the public). The product is more than 98% CBD in an alcohol and sesame seed oil base with artificial (strawberry) flavoring. There is only a tiny trace of THC in the formula nor other cannabinoids.

Charlotte's Web Hemp Oil is a whole plant product that includes many full-spectrum cannabinoids as well as a better spectrum of flavonoids, terpenoids and some THC.

Reasonable people are going to agree that the more choices and options people have to treat themselves or their children, the better. If Epidiolex becomes available and works to control refractory seizures, then obviously that's a good thing. That being said, it's been my experience, as well as many, many other people's, that the best seizure control as well as anti-inflammatory and other medicinal benefits comes with the whole plant medicine that includes the wide variety of cannabinoids PLUS THC. That's been relatively easy for those of us in legal states -- we've added different cannabinoids (like the CBDA that Sophie is using) and, of course, THC (that Sophie is also using).

Plus, I'll just come out and say it: I don't trust the machinations of Big Pharma and dread their encroachment.

The tiny little mother mind™ doesn't have the time here on the blog to really explain or instruct you, Reader, about the endocannabinoid system, but I highly recommend that you read about it and educate yourself. The website www.projectcbd.org is an excellent resource, as is Dr. Bonni Goldstein's book Cannabis Revealed.**

UPDATE: If you enjoy podcasts, the Stanley Brothers (of the eponymous Charlotte's Web fame) who are a sort of Jesus and disciples for some of us in the cannabis medicine world, have a new podcast that airs today, Friday, the 27th. Their first episode features Sanjay Gupta and discusses the opioid crisis and cannabis as an answer to it. I know a whole lot about cannabis, as you know, but I learned so much more. This weekend, I believe, CNN is airing Part IV of its series Weed. The times are a changing. Let's hope that they change in the right way -- WHOLE PLANT CANNABIS MEDICINE that Big Pharma doesn't destroy.

Here's the podcast link:

Stanley Brothers Breaking Ground



















* My tiny little mother mind™is also a nerdy mind, and I love to pick apart the names that pharmaceutical companies give their concoctions. With the help of the internets I've parsed out Epidiolex:

Epi:   Greek, upon, on, over

Dio:  Latin, deity, god

Lex:  Latin, law, statute

So, are we safe, Reader, in interpreting this new drug manufactured by GW Pharmaceuticals as being Over God's Law? 




**Disclaimer: I helped Dr. Goldstein with the book and am given a small percentage of sales.

A Couple Days Ago in Georgia, My Home State

This happened.

What is there to say about that in 2018, the heart of darkness that is America? It's not sufficient -- and even grotesque -- to note that there were counter-protestors that far outnumbered those raising their hands in a Nazi salute and burning swastikas. A white guy who blew away four black people in a Waffle House is caught alive and sits in a jail cell, and it isn't enough to note that an unarmed young black man wrestled the gun away from him, and the Man in Charge, who runs at the mouth otherwise, said nothing.  It isn't enough to lie in bed every morning and wonder whether the Man in Charge is still alive, hoping that he isn't, aware that this is happening, this seethe and boil, everywhere, even in my heart. This is happening. It's difficult to remember that beyond all duality and consciousness is Love.

My friend Rosemarie wrote it --wrest it -- best:

Meanwhile in America











#BlackLivesMatter
#Resist

Missing Teeth

Chocolate Flecked Yellow Cake with Milk Chocolate Frosting

Out here in the gig economy, we're scrolling through online job sites, taking cake orders and editing jobs, and buying lottery tickets because you just never know. I do know there are Russian bots out there and enormous intrusions into my privacy and yours, so I probably deserve every bizarrely targeted ad I get, but I'm mostly intrigued and sometimes thrilled by the random shit that finds its way to me. I can't help thinking that something good and lucrative will surely land on my lap and all my troubles will be over. Nearly every day, I get a slew of requests in my email box to interview promising writers of upcoming books with titles like Finding Your Wow or The New Discipline: Building A Tiny Home for Time-Outs. Money is never mentioned, though, and I honestly can't bring myself to tell them that my audience, while faithful, is more devoted to learning about the intersection of politics, disability, parenting, poetry and mermaids than how to explore inflatable zones. I removed the link from inflatable-zone.com to ensure that you aren't projected into some kind of alternative universe, although there's a fair argument to be made that we're already living in one:

Hello Dear,

I am Ellen from inflatable-zone.com

We just found your articles on your blog were attractive. I think your style of writing is quite good and fit to introduce my company's products. We are looking forward to establishing a cooperative business partnership with you on the basis of equality, mutual benefit.

We would like to sincerely invite you to cooperate with us.

Back when many of us thought Bush was the worst President in all of history and couldn't understand why our fellow countrymen would vote for the guy they "most wanted to have a beer with" yet still felt somewhat connected to them as human beings (unlike today's clusterfuck of living amongst seeming aliens who voted for and still defend that POS running the kakistocracy), I got this request:

Dear Elizabeth,

Can I write an article for the a moon, worn as if it had been a shell? It would be regarding Danney Williams, the man who says he is the son of Bill Clinton. 

Let me know if you want to chat about this. 

Sincerely,

Reader, if there's one thing I know, it's that laughter is good for the soul, that having a strong and dogged sense of humor and absurdity will save you from all manner of insanity and despair.

Dear Poet / Writer,

Greetings! Hope this letter finds you in a cheerful mood !

As well known to the intellectual world The Home of Letters (India) or
HOLI is engaged in literary, publishing and socio-cultural activities for
the cultural uplift of man. It acts like a platform to exchange sublime
ideas between the poets, writers, scholars and the intellectuals of the
world through its various publications, books, anthologies etc. It is a
House which organises small seminars from time to time (depending upon
finance) where poets, writers, scholars and the intellectuals discuss
various educational, literary and socio-cultural topics. It also awards
individuals for their high level achievement in personal or professional
life / for outstanding accomplishments in the literary, intellectual or
academic realm / for outstanding contribution to the fields of art, culture,
education and society / for their commendable contribution in promoting
world peace and universal brotherhood with humanitarian ideologies. Since
1997 HOLI has been playing a very significant role in the above fields.

You will be pleased to know that we
would like to confer upon you “MATTHEW ARNOLD AWARD" for sweetness and
light in creative writing.

The multi-colour certificate (20 X 14 inches in size) is beautifully
laminated on
WOOD and photo-framed (for
hanging on wall / for
placing on table or shelf), which will be sent to you by Regd. Airmail.
Your
name will be published in one of our publications in future.

If you are interested to receive this WOOD-LAMINATED citation you may
send USD 150 (as
administrative, processing, packing, postal charges etc.).

*Mode of* Payment : Bank Wire
Transfer (please ask for our SWIFT bank details)

The universe is abundant, no?*


Are you still with me? Do you need to order a cake, maybe? I'm obviously not doing anything constructive today.

What about the title of this blog post? You know, Missing Teeth? Here's today's email, a request for me to interview a dentist acutely aware of the missing teeth problem in America:


Dr. Shamblott is available to discuss why there is a significant high percentage of American with missing teeth even when there are a variety of options to prevent tooth decay and to replace missing teeth.  If you’d like to schedule an interview with him, or having him write exclusive materials for your publication, please let me know, I’d be happy to coordinate all the details.

Reader, is it condescending to email this public relations firm back that my services as an editor might be a better idea, starting with the subject line?

Expert Discuss Missing Teeth in America

*No, I'm not really going to accept my Matthew Arnold award for sweetness and light by wiring $150 US dollars to The Home of Letters. Don't worry.

Happy 420 Day and Tales from the Vet

I've been talking about marijuana/cannabis for well over five years now, right here on the old a moon, worn as if it had been a shell. If you go over to the Looking for Something? search bar on the right-hand side of the blog and put in the words medical marijuana, cannabis, you'll pull up posts from 2008, even, when I first started reading about marijuana and pondered smoking it myself and blowing it in Sophie's face. There are posts documenting my walks up and down Melrose Avenue, looking for a pot doc to give me a medical marijuana card, posts documenting my resignation at being on a waiting list for Charlotte's Web, posts about my jubilation coming off the waiting list (one of the first 20 or so in California back in 2013), posts about our great gratitude for its success in giving Sophie the first real seizure relief in her life and, of course, numerous posts where I wrote -- or rather ranted -- against and about The Powers That Be in all the shapes they took, whether it was a doctor, a head of a non-profit foundation, a pharmaceutical company, a legislator -- even a relative or two -- who basically threw obstacles in our (and many other families') path.

Take a moment, if you have one, and put those words in the search bar just for me.

If you don't have a moment or are tired of me, please at least read the two links below, one a blog post from four years ago and the other an article that appeared in an investor paper this week.

Fight the Power.

GW Pharma Spikes on Likelihood FDA Will OK Cannabis-Based Med

I'm only saying this because it seems like not a single moment goes by in the day that I don't run across something cannabis/marijuana related, and it's all about the tide turning, the evolution of seemingly intractable folks in power, the swaying of public opinion and on and on and it just makes me feel all -- I don't know -- sad? Angry? Bitter?

Yesterday, I watched a bit of a live Facebook thing with old Bernie Sanders and young Cory Booker, touting some bill that is being introduced to Congress, and while I deeply admire Senator Booker for his progressive views, his eloquence and general decency,  I'm cognizant of his formidable obeisance to Big Pharma and it just makes me -- well -- sad. Angry. Bitter. I don't have anything to say about Senator Sanders, other than he appears to be still working doggedly for the people which is a good thing, but I'm tired of the dogged white man thing, and I'm not sorry about that, especially given the racial component of the whole marijuana legalization thing but that's a whole other story.

In the end, it's all about the money, isn't it?

What do I know? Not shit, apparently.

Scratch that whole post up there.

Read this article, now.

Let me tell you about what happened at the vet the other day when I brought our 14 year old poodle Valentine in for a general check-up. Valentine is still remarkably perky despite her many years, but she clearly suffers from arthritis and has lately also been needing to go outside about a million times a night and seems -- overall -- confused, as well as deaf as what do they say -- a post.

I am decidedly and unashamedly not a dog-lover, although I do have a great fondness for Valentine, and so after putting off the whole take her to a vet and spend about a gazillion dollars, I did bring her in. The vet said that she should probably go on an anti-inflammatory for her joints and that this might cause some side effects like diarrhea and vomiting and would cost about a million dollars, in addition to the $450 blood work and urinalysis that she'd already done and I felt like I might cry there in the smelly room with cat hair floating around and the kind vet assistant smiling benignly -- cry there not for the poor dog but for my old caregiver self who really just can't handle any more side effects of drugs so I said, brightly, What about CBD oil? It's a potent anti-inflammatory! And she said, Well, you know, it's a Schedule One narcotic, so I can't say anything about it, and we need more studies done, so I ran out of the room, pushing the benign assistant aside, dragging Valentine behind me on her purple leash out into the sparkling yellow Los Angeles light and just ahead of a dark cloud that opened up raining diarrhea and vomit all over the vet office.

She In There

This is what Sophie looks like when I take away even the tiniest bit of Onfi, the benzo that we've been trying to wean her from for four years. I'm still weaning the damn drug, a tiny, tiny bit at a time. I tinker each time, as well, with the various cannabis medicine products, and good things happen. Every day is different, though, and we continue to live this life as an experiment in progress.

Like my dear Dr. Jin said, so many years ago, She in there, she know.

I am sorry that I've left you readers high and dry, an occasional post once or twice a week. I haven't visited blogs or left comments, have been deleting newspapers and articles from my Inbox and have just generally avoided -- well -- everything. I've been down and blue and struggling a bit with I don't know what, but I feel it lifting a bit and hope that I will soon be back in writing daily order. I'm engaged in the world as I've always been, but man oh man every single day we wake up to that vile emperor with no clothes and his persistent presidency. It's a freak show and a clusterfuck, and like we say in the writing biz, you just can't make that shit up. I'm not underestimating its effect on my psyche -- nor should you if you're of the same persuasion. If it doesn't bother you or you're one of his supporters, well, I'd bless your heart if I felt any respect for you at all. May it all be over soon and not because some bomb is dropped on us for being such idiots. The thing is, though, that what's rent is rent, right? The veil has been pulled back. The core is rotten, isn't it? So much work to do and most of it is about coming to terms with our privilege and our whiteness.

I've been reading a lot lately -- have been able to dig in deep and get through to the end of novels and bask there glad and filled up. I recommend Lisa Halliday's Asymmetry, Jesmyn Ward's Sing, Unburied, Sing, Terese Mailhot's Heartberries: A Memoir, Claire Dederer's Love and Trouble and An American Marriage by Tayari Jones. I had ordered a book from the library that finally came in, so many months after the request that I forgot where I'd read about it, but I really liked it -- a novel called Elbowing the Seducer by T. Gertler.

Oh, and then there's Fire Sermon by Jaime Quattro. I'm obsessed with her and her writing, her brain and mine.

What else?

I've tried to wander into museums, too --saw a beautiful David Hockney show at LACMA over the weekend and an amazing exhibit that included a multi-media show by Kara Walker at the Hammer last week. I'm so grateful for the sustenance of art -- of words and painting wrought, especially, from great struggle and suffering. Our lives are enriched even as our own troubles recede and perspectives enlarge.

Dear John Boehner,

My daughter, Sophie, one of the many people who has suffered because of your influence

Dear Mr. Boehner,

My first response to your recent "evolution" toward supporting the legalization of marijuana was two words strung together. The first sounds like truck and the second like foo. I'm aspiring to the elevation of language, though, so I will refrain from using epithets, however justified. When I recovered from seeing your picture (dated from 2015, and I frankly would have preferred never seeing your face again) above an article titled John Boehner's Marijuana Reversal, I learned that you had used Twitter to announce your startling "change of heart" regarding the legalization of marijuana. Here's your Tweet:

I’m joining the board of #AcreageHoldings because my thinking on cannabis has evolved. I’m convinced de-scheduling the drug is needed so we can do research, help our veterans, and reverse the opioid epidemic ravaging our communities. @AcreageCannabis

My second response was a physical one, a stomach-clenching, heart-pounding, limb quivering somatic blow-out that had everything to do with rage. My rage. I could have been the Bodhissatva of rage. A Bodhissatva is a being who is capable of reaching nirvana but delays doing so out of compassion for other suffering human beings. As the Bodhissatva of Rage, I am thinking of the grotesque numbers of people arrested for simple marijuana possession, the majority of whom were persons of color. You know the statistics, so I won't include them. I am also thinking of the legion of people, including children like my own, that have suffered and continue to suffer from debilitating diseases that can be treated successfully with cannabis. I'm thinking of the legion of children, in particular, with seizure disorders, who live in states stymied by federal law or who do not have access to the medicine that will alleviate their children's suffering and even save their lives.

I know there are some out there who are encouraged by your "change of heart," but as the Bodhissatva of Rage I am repelled and horrified. You worked incredibly hard during your entire career as an elected official in our government and one of the most powerful senators to block any kind of marijuana drug reform. You knew all the statistics, listened to and read all of the appeals. I appealed to you personally during my days as a cannabis medicine advocate. You rebuffed all those appeals, ignored the statistics, persevered in obstruction and helped to destroy lives and perpetuate some of the most vile racist laws and practices in our country.

One of your buddies had back pain alleviated by marijuana, leading you to see the light. I guess the tens of thousands of appeals from mothers of children with cancer, with autism and with seizures weren't enough. You evidently are also appalled by the numbers of people incarcerated in prisons for simple marijuana possession. You turned a blind eye to literally generations of young men of color for how many years, Mr. Boehner, before Acreage Holdings, an investment company with an enormous footprint in cannabis, brought you on? While you were in Congress, more than 420,000 people were arrested for marijuana possession, the majority of them persons of color. You knew that. How much money do you stand to make now in this new evolved venture?

The wheels of commerce are running beautifully, even as I type. Marijuana stocks are rising rapidly. So much money to be made. Pharmaceutical companies are rushing to seize the whole pie, pushing out those of us who have paved the way. Your evolution is disgusting, Mr. Boehner.

Truck foo.

With no due respect,

Elizabeth Aquino

Seeking Position

Experienced freelance writer looking for work. Experience includes several ghost-written books of non-fiction, medical writing, healthcare writing, personal interest articles for The Los Angeles Times, marijuana.com, Spirituality and Health Magazine and contributions to gratefulness.org and OnBeing. Personal work published in numerous literary anthologies and journals. Micro-memoir published by Shebooks in 2015 and available for purchase online at Amazon for a ridiculously low price. Skills include editing, proof-reading and an uncanny ability to mine story from seemingly ordinary things and lives, and don't we need stories in order to live?

Website with CV and all relevant publications is here.


Salary negotiable.

Gratitude Schmatitude

I'm not going to lie. I've been feeling about as low in general as I've ever felt, and rather than going through it all here (as I've done ad nauseum for many, many years), I'll just tell you that yesterday was a doozy in nearly all respects, that I spent a good many hours plumbing the dark side and didn't have any expectations that I'd be doing anything other than spelunking for the rest of my life. Have ya'll ever spelunked? I did many moons ago, when I was a painfully awkward preteen. I lived in Georgia, and as I recall it now, the weather was grotesque, hot and humid, but despite this, my mother had signed me up for a number of Red Cross activities which included canoeing, lifesaving and spelunking. As my regular readers know, I was a terrible athlete and preferred reading to just about any other activity, so slithering through a red clay tunnel was not something that I even remotely enjoyed. I do remember, though, that it was surprisingly cool in those tunnels and that I was actually pretty good at spelunking, namely because I was skinny. Yes, I was actually skinny back then and good in the dark, probably confident that light would come.

But I digress.

I know there are plenty of ya'll out there who espouse the whole gratitude thing, and while I've dipped into it now and then as a thing, I'm more prone to feeling gratitude for real, as opposed to a practice, and that's because I actually have so much for which to be grateful. In other words, it's not hard for me to feel grateful, even as I feel like shit or shit's raining down. Also, I was once a Catholic. I imagine only lapsed or former Catholics get the full gist of that statement.

The groove that my forehead has worn in the tile of my shower got a little action yesterday, as did the plumbing. Lots of tears. I am certain, during these times, that bitterness, resentment and overwhelming sorrow will take me over. You figure out which of those sentences are hyperbolic.

Then I opened my mail. I ordered the above pictured book a few weeks ago. It was published by the folks at gratefulness.org, or A Network for Grateful Living, an online site that I've had the pleasure of reading and then being a contributor off and on for many years. I always felt like a bit of an imposter when my writing appeared on their site, mainly because of the above -- the bitterness and resentment, the gratitude schmatitude thing and my own skill at spelunking. I ordered the book because what they do at gratefulness.org is a beautiful thing, and I want to support them. So, I'm flipping through the book, reading beautifully illustrated quotes by the Buddha and Barack Obama, by Brene Brown and Maya Angelou, Desmond Tutu and Mother Theresa, when I come upon -- well -- me.

I swear I'm not telling you this as an act of self-promotion or even as a humble brag. I'm telling you this because I was feeling as low as I've ever felt as I flipped through this small book, and I had no idea that my words would be excerpted in it. My initial response was to burst out laughing at all the world's absurdity, particularly my own.*

There are no accidents, my friend Carrie Link has said.

Yes, I felt buoyed by the support and restored by the acknowledgement. I felt released by laughter. Mostly, though, it occurred to me that even the great sages with whom I was absurdly placed must have periods where they, too, are stuck in dark tunnels, crushed by the earth, that all of us share this humanity and that we are humbled by one another and, of course, completely grateful for one another. For real, not as a thing.


You can order Everyday Gratitude here. Please support them because they're doing beautiful work in this world.













* The index of contributors places me after Maya Angelou and before Joan Baez. I know it's alphabetical, but ya'll!

Cambria

Oliver and I, along with my dear friend Cara and her two daughters, drove up to Cambria yesterday. We''re spending two nights here, just hanging out and doing -- basically -- nothing.

It occurred to me the other morning when I was talking on the phone to my friend Christy Shake that the only way to survive the life we live as caregivers to children with seizure disorders is to replenish ourselves in any way we can and to do so regularly.

I know this is a privileged thought -- I know that there are many people who are out there doing the work we're doing who don't have an opportunity to get away, who dig down continually to find strength to keep going. I know, too, that some people just won't get away or refuse to get away or believe that they can't get away because there's no one who takes better care of their child than they do.

I don't know what to say to that other than it's become about as necessary to me to get away as it is to keep doing what I'm doing. As necessary and in order to live, even. Cognizant of my privilege, I can tell you that it's only been very recently that I've "gotten away" and not felt guilty about it or worried that something very bad is going to happen to Sophie. I'm going to say those things without judgement or explanation and will ask you not to as well. Tell me anything, that is.

Caregivers of severely disabled children, especially those who've been doing it for decades, know some things and we know them deep. Things haven't gotten easier even as I've learned how to dissociate and then come back. I don't know the word acceptance even as I surrender. The word toll. Taken.

There's everyone and then there's us.

Three things:

The cumulative years
The present
The projection into the future

I feel joy in my core even as that deepest part is dark. Memory.


I had a long conversation with an Italian artist in his studio amongst sculpture and paintings. Angels and toreadors, winged things, dancers and an architect, the suggestion of things broken and things free. Sophie in all of it, as was Carl and his birds. The words wing and soar. I'm most myself, both consumed and generative, in art.

Nature, too. Respite. Respire.

Everyone forgets that Icarus also flew, the poet Jack Gilbert wrote.

Shedding Tears

I've decided to be fully present during each seizure and shed tears, at least afterward. The word shed.  Dutch and Germanic, Old English root: to separate out, to scatter, to divide. I remember watching a scene in a movie -- maybe Zorba the Greek -- where a bunch of women are wailing in the streets about something or another. I can't find the scene, though, so I might have made it up or perhaps reached into my cellular wellspring where the Middle Eastern and southern Italian histrionics lie embedded. The word histrionic. The dictionary states that its origin is the 17th century, and I imagine some Germanic guy or Anglo-Saxon with the whitest of skin took the Latin root for drama and acting, twisted it into something unfavorable, applied it to women, in particular.

I have a friend whose adult son is schizophrenic. She's done things like cleaned his shit from the walls of his apartment. She and I recently sat in a car outside her house and discussed how we imagined ourselves screaming in the streets with other mothers, other women. Tearing at our hair and wailing, rending our garments.

How fitting to shed --  to empty oneself that way.

Watching a person twist and jerk and grimace over and over, in minutes and then years, helpless to do anything but watch and abide in the moment -- surely this calls for tears afterward as much as efficiency or quiet?

Are there enough tears?

There's nothing to be thankful for with seizures.

I don't believe in prayer and would as soon as stand on a pew and wail then beg.

There's gratitude, though, in tears.

I bought some daffodils the other day. The buds were tight, the stalks like paper. I stuck them in water and watched them unfold into yellow.

The Full Catastrophe

Archival Footage on Epilepsy Day

I found this in a shoebox of old letters at the back of my closet. I've always carried around a tiny notebook in which to jot observations, things seen that I might later write around. This one only had a few pages of scratchings -- the first dated March 25th, ironically, one day before Epilepsy Day (which I imagine wasn't a thing back then) and a few weeks after Sophie was born. It had that sort of innocence to it.

(branches).

The next page had this scrap:

I think I've told you before that I didn't write much of anything for many years after Sophie's diagnosis in June of 1995. An old writer friend of mine who developed Hodgkins disease in his early twenties once told me that he found it impossible to write anything during his treatment, yet I know countless people who've written quite brilliantly through whatever tribulations they've undergone. Write through it some people say, but I couldn't do that back then. I think it's because I'm good at punishing myself.

I can hardly remember what it felt like to be the me of those early pages of the little notebook. By the time the summer rolled in, we were in the thick of it.

There's no date on that list of questions I posed to Dr. Solomon, but she was Sophie's first neurologist, and prednisone was what we used when They (it's always They) ran out -- yes -- ran out of ACTH, the steroid gel we were injecting into Sophie. It must have been the middle of the summer of 1995, about two months after her diagnosis. As I remember it, ACTH was only used for six or so weeks because the side effects are brutal. Sophie's face blew up, and her eyes were slits, her mouth covered in thrush. It wasn't helping the seizures, either. The latter part of the treatment was a weaning period. That's when there was no ACTH to be had (what the hell, right?), so They (it's always They) put Sophie on prednisone. The weaning process gave Sophie pseudo tumor cerebrii, a rare side effect.  I noticed Sophie's fontanel bulging one day, not just when she screamed, which she did most of the day while on ACTH and prednisone, but even when she passed out. They (it's always they) relieved the fluid pressure by giving her a series of spinal taps. Sophie was barely five months old. I turned 32 a month later.

I'm not sure how I got through those days, but I did, because here we are, right? Back then, I took notes in the little notebook and took it to her pediatrician.

Guess what? I haven't looked at this little notebook in more than twenty years, but I remember every single thing in my tiny little mother mind.™ It's as if my writer mind was compiling detail even as my writing was reduced to lists and questions.

Busy. Busy. Busy.


It's March 26th, 2018. It's officially Epilepsy Day or Purple Day.

I'm obligated to educate you about epilepsy. I got a message from a good friend whose young adult son has severe epilepsy. She is helping someone in the Epilepsy Community find a good neurologist for her child who, they believe, has infantile spasms, the same syndrome that Sophie was diagnosed with back in 1995. If I told you that the treatment for infantile spasms is much the same twenty-three years later with the exception of a couple of new drugs and the "advancement" of brain surgical technqiues, what would you think?

• Epilepsy affects more than 1% of the population. 
• 1 in 26 persons will develop epilepsy at some point in their lifetime. 
• More than 30% of persons diagnosed with epilepsy will struggle with seizure control. 
• 1 in 1000 adults and 1 in 4500 children will die from SUDEP (Sudden Unexplained Death in Epilepsy Patients) a year. This is the leading cause of death in patients with uncontrolled epilepsy.

Parables of Neurology, The Cosmos

Star Trails
Photographer: Carl Jackson

At some point in the waning years of the last century, Sophie was on her eighth or ninth drug, a drug that wasn't yet FDA-approved but that The Neurologist At The Time thought worth trying. I received the drug from a pharmacy in London, a tiny little shop on a cobblestoned street with a 17th century sign hanging outside that swung in the English rain. You figure out which part of that sentence is fiction. I've told this story before. The drug was a white powder and came in a foil packet called a sachet, and after I carefully poured the contents out, I cut them with a razor blade to get just the right amount for the baby, about enough to fit into a 1/4 teaspoon. I dipped my finger into the powder and put it on my tongue. Powerful enough to stop seizures but bitter enough to spit out. I gave it to the baby.

Know that the word irritable is frequently used in neurology literature as a possible side effect. An Earlier Neurologist listened to my complaints about the Baby's constant fretting and said, You have to figure out what your tolerance is as far as irritability, after which I lit the fuse that connected the telephones of the last century that we were using and blew him up. That should be parenthetical.

On the third day and then night of the drug in the sachet, Sophie began screaming all night long, flailing her arms and arching her back. She screamed until she became hoarse. You can't imagine what a hoarse infant sounds like -- just air but more -- air that you can hear, and I spoke into the air as I walked with her, up and down, up and down. Enough. This is enough. No more. We will not do this. The next morning I called The Neurologist At The Time. The Neurologist At The Time was what they called cutting edge, no pun intended, knives and docs, docs and knives, and I liked him. I was going to say love but that would be fiction. I called him up and said, The Baby is beyond irritable. She is psychotic, if babies can be psychotic. She is still seizing. She is now on two non-FDA-approved drugs and is being weaned from Phenobarbital. How many babies do you know on this combination? Could the three drugs be interacting? 












(silence)













The Neurologist At The Time said, That's a very interesting idea, and the words travelled as sound through a wire connecting us, across the country (I was visiting my parents in Atlanta and The Neurologist At The Time lived in New York City) and assembled themselves into block letters that floated out of the can I held up to my ear and spun round my head.


T h a t ' s    a   v e r y   i n t e r e s t i n g   i d e a.












(silence)









I have a Bachelor's degree in English and French literature. I've also read an indeterminate number of novels, including all the classics in French. I've studied Mandarin Chinese, excelled in modernist poetry and wrote an honors thesis on Pascal's Pensees. The only science class I took in college was Zoology, and during my senior year I thought I might round out the piles of novels and poetry that lay everywhere in my room by taking Waste Management. I got a D in Calculus.  Yet, evidently, as per The Neurologist At The Time, The Cutting-Edge Neurologist, I was having interesting ideas about my nine-month old daughter's brain and its response to seizure drugs from other continents.

I never got over this, by the way.

The landscape changed in a moment, over the telephone. The tiny little mother mind™was born in that moment, and I'd describe the birth as a kind of star trail like the photo the Bird Photographer took in the middle of the California desert, a time-lapse of stars burning or dying or traveling as the world spins on its axis, but that might be a mixed metaphor, and I  don't know physics either or even photography. Black holes. No man's land.

This is not fiction.


Stephen Hawking said, The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge.

Whacking Moles

I don't know if that's a Buddha in my coffee cup or Edvard Munch's dude, screaming.

And that's all I've got to say today.

Reader, what are you up to these days?