Triangles

I haven't written here in over a week, and I haven't visited many of your blogs. I have, mainly, been out of sight. I was helping to take care of my uncle who had a bad fall and was recuperating in rehab and then my house. I was glad to do it as he's family and has been very good to us, but man oh man. Caregiver central. Fortunately, my father and cousin Philip came out this past week and helped me with all things caregiving, so I'm feeling a tad more sane. Here's my cousin Philip getting all the love from me. He is really more of a brother to me than cousin as he lived with my family for a number of years when his parents, my aunt and uncle died, and my parents became his guardians.

I sure do love him. I didn't get a good picture of me and my dad together, although I did get a good picture of my dad wearing a man purse, but I won't post it here. I'll tell you this much -- he looks good even in a bright orange cable sweater AND a man purse.

I went to Portland a week ago with my dear writer friend, Tanya Ward Goodman. She sprang me from the confines of home and caregiving, got us a fabulous hotel room and coaxed me to not only do some writing of the goddamn book but to walk over 12,000 steps on both days we were there! We went to see the glorious Pam Houston, Lidia Yuknavitch and Cheryl Strayed celebrate the recent publication of Pam's new memoir Deep Creek: Finding Hope in the High Country. I haven't yet read it, but I heard her read parts of it, and it sounds beyond beautiful.

I was called up on stage that night with Pam, not because I'm a writer or because I am about to finish my goddamn book, or even because she knows me, but because she was playing Truth or Dare with Cheryl and Lidia, and one of the truths was that she was in a sorority, and one of the dares was for her to sing a sorority song. She was up on stage and turned to the audience to ask whether anyone else was in this particular sorority, and I don't know what came over me, but I revealed that I was (Reader, you might not be aware that I was in a sorority, and it's not something that I talk about nor will I, but even though it's sort of embarrassing in this day and age, I actually found beautiful lifelong friendships and had a smattering of fun back in the day -- plus, you know, Pam Houston was one, too), and there was an enormous roar in the place and I fainted dead away. Just kidding. I raised my hand, and because this was in PORTLAND and everyone there was a Lidia, Pam or Cheryl acolyte, no one else in the entire place (and there were hundreds of women in there) owned up to being in this particular sorority, EXCEPT FOR YOURS TRULY. So, yeah. Pam called me up on stage, and everyone around me yelled at me to GO! so I went. Pam sang and I pretended to sing one of our sorority's stupid songs, and it was actually kind of fun if you like singing with a famous author in front of two other famous authors and an auditorium full of Portlanders. Here's the still photo from the video that Tanya took:

And here I've gone and revealed it to more people. Holy shitoly. Now you know everything about me. Just so you won't hate me, here's a photo of me back in the day at a party. I was not drunk but I was wearing a wig for some reason, and that blue shirt is actually a dress that I tucked into a pair of tuxedo pants. It was 1983, for god's sake, and I was thin.

Sigh.

Here's another one.

How about that clown collar? Underneath was a black velvet dress with a jewel neck. The collar buttoned on. A few drinks later, here I am:

So, there you go, Reader. I showed you what I was doing back last week and then way, way back to when.

What's happening with you?

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.

The Subversion of Quackery

WPA poster, 1936-1938

quacksalver

PRONUNCIATION:

(KWAK-sal-vuhr) 

MEANING:

noun: A quack: one pretending to have skills or knowledge, especially in medicine.

ETYMOLOGY:

From obsolete Dutch (now kwakzalver), from quack (boast) + salve (ointment). Earliest documented use: 1579.

I woke up this morning next to Sophie who proceeded to have a relatively big seizure that I was able to stop by administering a couple of drops of THC. I have no doubt that if I hadn't given her the THC, the seizure would have been prolonged, and she would have been clammy and unresponsive for a couple of hours afterward. Instead, she fell asleep for an hour or so, woke up, ate breakfast and went to school.

I lay in bed after the seizure thinking back over the years of her seizures and the years of various doctors' prescribing her anti-convulsants. I thought about the combinations of these drugs -- 22 of them -- their effects on her brain and body systems, how none of them worked, how her seizures still came and how they, the drugs, wreaked more damage, arguably, than the seizures themselves. I thought about the moment when she was nine months old, writhing and screaming uncontrollably all day and night, when I asked the esteemed neurologist whether my baby might be reacting to the combination of the three drugs he had her on, one non-FDA-approved and the other two approved for use in adults. I thought about his response, a hmmmmm over the telephone that stretched into infinity, followed by that's an interesting idea and then the universe tilting on its axis, folding up and disappearing into a black hole from where it had been birthed. I knew in that moment that no one knew what was up with my baby, and if my suggestion was a good idea (I was 31 years old with a Bachelor of Arts in English and French Literature and a Pastry School certificate), we were traversing a no-man's land.

I thought about the moments when we injected her with five vaccines to protect her health and yours, her tiny mouth an O, the subsequent scream that stretched out for years, my own a mirror image. I thought about the derision, the mockery that those of us who question vaccine safety have been subject and then the smugness of Science.

Quack.

I thought about all those moments this morning as I lay beside Sophie, and then I thought about the thousands of families still subject to the multiple drug combinations that these doctors are still peddling, how a young woman contacted me last week to tell me that her 18-month old baby, on four drugs, was still seizing. I thought about the compulsory and draconian laws that were recently passed in California regarding vaccinations and how grateful I am not to have any babies subject to them. I thought about the CBD and the THC and the fight to get it and then the getting it and Sophie's immediate response. I thought about my great good fortune in meeting Ray at Realm of Caring and Dr. Bonni Goldstein and living in California where we have access to high quality cannabis. I thought about the Coloradans: the Stanley brothers, Paige Figi and Heather Barnes Jackson, all of them instrumental in shifting Sophie's path and countless others. I thought about the FACT that Sophie is now off nearly 80% of one drug and 65% of the other, that these two drugs have done irreparable harm to her, even as they are withdrawn. I thought about the cavalier attitude that most neurologists have toward cannabis, their caution and their ignorance. I thought about Obama's acting Drug Enforcement Administration Chief's statements on November 12:

"What really bothers me is the notion that marijuana is also medicinal -- because it's not," Rosenberg told reporters last week. "We can have an intellectually honest debate about whether we should legalize something that is bad and dangerous, but don't call it medicine -- that is a joke.""There are pieces of marijuana -- extracts or constituents or component parts -- that have great promise," he continued. "But if you talk about smoking the leaf of marijuana, which is what people are talking about when they talk about medicinal marijuana, it has never been shown to be safe or effective as medicine."  

I thought about the wheels of Big Pharma, churning, trying to catch up. I thought about their influence on Science's practitioners, how they pay them to promote and advertise their products, ensure their profits. I thought about the money they must set aside for those damaged by their products, how they are shielded and how little it matters to their bottom line. I thought about quackery and the subversion of quackery -- when what is considered Science is actually not Science at all.

Quack. Quack.

I thought about those who come here and tell me that I'm too angry, that I complain too much, am terrifying, a miserable person. Is there a word for a reverse black hole? For chaos pushing outward, inward? If I were an angry person, I would have long since disappeared. You don't watch your daughter seize for nineteen years and suffer from terrible side effects of drugs and vaccinations that you gave her in good faith and then see her improve dramatically with an oil from a plant that anyone can grow and stay angry. You'd be dead, and I'm very much alive.

Repeat. I woke up this morning next to Sophie who proceeded to have a relatively big seizure that I was able to stop by administering a couple of drops of THC. I have no doubt that if I hadn't given her the THC, the seizure would have been prolonged, and she would have been clammy and unresponsive for a couple of hours afterward. Instead, she fell asleep for an hour or so, woke up, ate breakfast and went to school.

Quack. Quack. Quack.

Los Angeles Riots

Those are some policemen that were eating dinner in a taco joint last night where I sat reading and eating shrimp tacos while Henry was at baseball practice. There was a white guy who looked like Eddie Haskell from Leave it to Beaver, a Korean guy, an Hispanic guy and someone whose ethnic identity was difficult to ascertain. I pretended to be reading something on my phone because I'm sort of afraid of cops in Los Angeles, but I took their picture. Yesterday was the twentieth anniversary of the Los Angeles riots, a terrifically awful day to remember but maybe it's a good thing. Our radio waves were filled with talk about it, and I heard black poets and Korean businessmen talk about the day; I heard Rodney King -- why can't we all get along -- himself reminisce about the routine beating that turned the city into a bonfire. I wasn't living in Los Angeles in 1992, but I have friends who stood on their rooftops in the Hollywood Hills with hoses, anticipating the sparks that might burn it all down. I'm not sure what has changed in the two decades since those horrible four days -- my own kids go to school in the middle of Koreatown where most of the rioting occurred, and as white boys, are nearly minorities now among their Korean, Asian and Hispanic classmates. They don't bat an eye, as the saying goes, about that. I yearn, sometimes, for a simpler life -- somewhere outside of this vast and busy, expensive city -- and then I feel grateful to be in the middle of it, making history in our own small way.