Wednesday, March 28, 2018

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

Monday, March 26, 2018

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.


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.

Sunday, March 18, 2018

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? 


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.


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.

Tuesday, March 13, 2018

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?

Wednesday, March 7, 2018

Sophie's Birthday Eve Reflections

Sophie will be 23 years old tomorrow, March 8th. Everyone says, I can't believe it! or they say, My God, how time flies! It's hard to believe that she's 23 years old! Sophie would if she could and I will tell you that it's not hard for us to believe that she's 23 years old, that we feel every second of those 23 years, that they have not flown by even for one moment, that she was a tiny baby and I her 31-year old mother in another lifetime, eons and eons ago.

We are filled up with 23 years, exhausted and exhilarated and indomitable.

Richard Engel, the chief foreign correspondent of NBC News has a very young son with Rett Syndrome. Rett is one of the many disorders that we ruled out as a diagnosis for Sophie, back in the early days when the powers that be had discovered a gene marker for it. Sophie tested negative for that particular mutation even as she had many of the clinical characteristics of Rett Syndrome. Since those days, they have found other mutations related to Rett Syndrome, but I admit to being lazy about testing Sophie for them. It has something to do with my ambivalence about the medical community, about what it means to fix and to cure. That's a post for another day.

Mr. Engel has written a beautiful piece about his experience fathering this special child and persuasively argues that his experience as a war correspondent and knowledge of PTSD parallels that of this new parenting journey. You can read it here.

On the eve of Sophie's 23rd birthday, I confess to reading the article with a bit of an eye roll -- well, not exactly an eye roll but more a sigh. I imagine that fellow veterans (war imagery always irritates me, but it's appropriate here) will understand. What struck me, on the eve of Sophie's 23rd birthday, is how innocent and heart-ripping Mr. Engel's yearnings and aspirations are and how dim his understanding of the journey ahead. That is as it should be. I don't mean just the trials and struggles, the cycles of grief and loss and anger and acceptance but rather the knowledge that comes from those cycles, and that contrary to what the psychologists tell you, they repeat themselves over and over and over. Despite the beauty of his prose and the exquisite sensitivity and vulnerability he reveals, he has no idea that he might one day, like we veterans, realize that his love for his son has absolutely nothing to do with curing him.

Monday, March 5, 2018

Gig Economy Update

Everyone Needs Cake™ for March Selections
photo by Carl Jackson

The gig economy is going ok. I'm making cakes every month -- this month's selection is a Funfetti Vanilla Cake with Vanilla Buttercream and White Chocolate Ganache Glaze and a Pistachio Rosewater Cake from Ottolenghi's new pastry/sweets book. I have orders for both of them throughout the month but can always take more! Everyone Needs Cake.™ I'm also working on a very cool project with a very cool tech entrepreneur that you will hear about soon, so stay tuned. I have some nice writing assignments via The Los Angeles Times but am looking for anything I can get to supplement them. Do you need a ghost writer? Do you need a writer for anything? Check out my website and pass it along to pertinent people.

As you know, Sophie is an Uber driver and working toward getting off the backs of our hard-working Republican lawmakers who are working on balancing this great Disunited States of Amerikkka's budget on her back. Between the Uber driving and her part time job as a sex worker,* she'll be in the black soon, I'm certain, and recognized for her contributions to the great Capitalist Economy.

Today, I paid my health insurance bill before my mortgage because -- you know -- I'd sooner be homeless than without health insurance.  That's not a complaint.

In other news, I thought I'd misplaced the four worn sheets of passwords that I keep, so I spent about two hours on the computer changing the passwords to all the important accounts, and then I found the password sheet in the dash of my car where I'd stashed it on my way to Palm Springs this weekend. Does anyone out there in the interwebs know of a better way to organize, store and keep safe from Russian bots the bazillions of passwords to one's accounts?

I hope ya'll are having a nice day. I miss all of you.

*See my post a few days back for an explanation to this, admittedly, inappropriate and very dark-humored comment.

Thursday, March 1, 2018

The Sheering Sun

There are those with whom I have nothing in common but the blood that runs in the veins. Cliche. The word blind doesn't mean what you think, if you're able and are you? Seeing nothing but light. Our shadow selves. Reading poetry this morning.

In the Beginning God
Said Light

Mary Szybist

and there was light.
Now God says, Give them a little theatrical lighting

and they're happy,
and we are. So many of us

dressing each morning, testing
endless combinations, becoming in our mirrors

more ourselves, imagining,
in an entrance, the ecstatic

weight of human eyes.
Now that the sun is sheering

toward us, what is left
but to let it close in

for our close-up? Let us really feel
how good it feels

to be still in it, making
every kind of self that can be

looked at. God, did you make us
to be your bright accomplices?

God, here are our shining spines.
Let there be no more dreams of being

more than a beginning.
Let it be

that to be is to be
backlit, and then to be only that light.

via poem-a-day


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