Apotropaic Devices: I Will LIft Up My Skirt

 

Tonight I watched a recording of a lecture titled "The Vulva's Pilgrimage: Understanding Medieval Genitalia Badges." I bought a ticket to hear this lecture from The London Drawing Group, so in lieu of listening live at some ungodly hour, I received the recorded version and watched it tonight after dinner. The pandemic has made possible a number of things for me, and, no, I'm not going mad. While I've begun a number of crafts and even dabbled in art for the first time in my life, I'm not yet casting vulvas. Yet might be an operative word there. 

Continue reading here.

We Can Do Hard Things, Monday 3/23/20

Fantastic Depiction of the Solar System, 19th century

I'm trying to remember what I wanted to write about today, but I just can't right now. I spent hours today doing virtual teaching, and I am beyond grateful for the precious children I teach and the wonderful folks who run the school and gave me this job. I took a walk through a largely deserted Los Angeles. Every person I passed gave me a wide berth. I love this city.

The POSPOTUS is going to gamble lives for the economy. "The cure is worse than the disease," he says. Meaning money lost is worse than suffering and death.










Everything, I know, is transactional in this culture.





My daughter's life is worth less than yours in the grand scheme of things. If she should get sick and need ventilation, she will be turned away if your "normal" child gets sick and needs ventilation. You know that, don't you? These are transactions that we must accustom ourselves to,



because






please, fill in the rest of that sentence. After the because.









A child injured or killed by a vaccine injury is a necessary sacrifice for the greater good. Children with disabilities shouldn't get funding for education because it takes away from those who are "normal." My taxes shouldn't go to a lazy ass person using food stamps to get by. If a person can't make it on minimum wage, he should get another job or another or another.










WE CANNOT LET THE CURE BE WORSE THAN THE PROBLEM ITSELF, the Master of Ceremonies said in the dumbed-down string of letters we call language now,













On another note, my ex and his lawyer continue to hound me. Now they want me to go through a job evaluation -- something that will assess my earning capacity and what the hell I've been doing with my time for the last five years. I'd cry but why bother? We're in a pandemic, and life as we've known it goes on. For some.



Being quarantined is a bit like hospital time. It's not really time but time passes. Those of you who've spent lots of time in hospitals might understand this weak attempt to describe it.



On my walk I thought about God and god and religion and those who have faith in plans and order. I thought about absurdity and randomness, about houses made of cards, about human fragility and frailty, about beauty and hope and pure, dumb luck.

I choose to be dogged with not so much hope or faith but a belief in things as they are in the moment and the experience that what comes next is utterly and completely unknown.

Doctor Visit, Year Twenty-three

Last Month

The new doc was a nice guy, even though he was about twelve years old. I appreciate that his practice, at a major medical center here in the City of Angels, has a significant number of young adults with developmental disabilities. I'm older than I look, he assured me at some point during the initial visit. I have three children. Generally, these visits consist of The Doctor asking me a whole lot of questions whose answers are duly noted in chicken scratch on the clipboard he or she sports. Nowadays, there's a keyboard and a computer screen that's always facing away from The Mother and The Patient. I'm not sure why this is so, but given the mundanity of the questions and the number of times in The History of Sophie, Inc. that I've answered them, I like to imagine that Sophie's file is flagged with some kind of red banner or star that stands for Noncompliant Mother. I like to imagine that it says somewhere in the reams of "information" it purports to have regarding my darling daughter that there's anecdotal evidence of seizure control success with cannabis medicine, but mother is a bit on the aggressive side so shouldn't be supported because it'll go to her tiny little mother mind™ and blow it up. I like to imagine a banner running across the screen that says, We have not helped this person in the 23 years that we've been treating her, but pretend like you know what you're doing.  Mother historically has been correct about her daughter and mainly appreciates kindness and honesty. To be fair, this was a Doctor and not a Neurologist, and like I said he was kind and direct and spoke to Sophie like she existed and I feel a bit of relief that we perhaps have finally found a physician that will coordinate her care, when it's needed. When it's needed is the operative phrase here, and it's been my experience that we're sort of held in thrall to the medical system, that we're a bit enslaved to its protocols and rules and regulations. But, I digress. The Doctor asked all the right questions for a bit and was respectful of my wish to not vaccinate Sophie. When he suggested that she should be tested for immunity to hepatitis, I reminded him that she would have no immunity, since she is no longer vaccinated, and then he suggested that she should be vaccinated with that and with the flu vaccine as well since the risk of complications and death from those diseases is so great, and I wanted to tell The Doctor that I feared Sophie's death every single goddamn day, and it wasn't from the flu or hepatitis, but that I'd also reached a sort of equanimity about it all, at least the death and absurdity part, but instead I demurred and gave a 16th century smile. When he asked whether Sophie was sexually active, I pulled the sword out of the scabbard at my waist and cleaved the keyboard in two, right between his legs, missing the member that had given him the three children, of course, because my aim is always true. Then I took a hold of Sophie's wheelchair and rolled out of the examining room.

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.

Hedgebrook, Day Nine

I only saw the moon last night because I turned my back and then turned back around. A pumpkin-colored disc floating just between the trees, close enough to touch except that I couldn't. I'd never have seen it if I hadn't turned.

Today I began the work of writing about Sophie's vaccination history. I push into the depths of the internet --pseudotumor cerebri and corticosteroids, pseudotumor cerebri and DT and polio vaccinations -- twenty years in, and it all comes back. How I didn't know a goddamn thing and neither did They. It's a chapter on control and there doesn't seem to be any way to, ironically, control the many arms of it. An octopus, eggplant purple, perverse, seductive, terrifying. The constant chirp of insect and throaty call of frog, the sunshine speckled pine tree outside my window, the raucous crow overhead, the solitude -- are they real? Is it opportunity to be so weakened by events outside of nature that you must find your strength in going back into it, or suicide  to do so?

My friend A suggested that I take James Baldwin's advice about fear:

Turn and walk into it.

Dream Notes

suffocating
even the recollection of the suffocation

All I can think of is how she struggles! said Oliver after breaking down yesterday in the car on the way home. He had just gotten his first shot at the doctor's office. (not a dream note)

anger/despair
the O of Sophie's mouth

cold, hospital hallways
elevator doors sliding open
dirty rooms
a cup of urine on the window sill, looking out to a darkened air shaft
(not a dream note)

the elevator door, the yawn of it
stretching open into the years
remaining

Snappy Answers to Stupid Questions* and Some Observations**

Questions


1.
(The well-meaning stranger)

What's wrong with your daughter?

She has a rare form of epilepsy.

Can't they give her something for that?

What a great idea! I'm going to call the doctor first thing!




2.
(The man popping peanuts at a cocktail party)

Does your daughter feel love?

No, but she does feel hate, and you'd better move out of the way because she's a really good shot.



3.
(The social worker doing a conservator interview)

Does Mom let Sophie make her own decisions regarding her sexuality and marriage?

No!  I've already arranged for her to be married to my oldest gay friend so that she can get some decent health insurance benefits!



4.
(The Neurologist standing in hallway of hospital)

Have you thought about the drug choices I gave you as the next treatment for Sophie?

Yes, and I think I'm going for the one that can cause aplastic anemia instead of the one that causes blindness, and I'm not sure whether the other one is right for a six month old. Doesn't it have pretty bad long-term cognitive side effects?

Well, what's a few points drop in IQ really matter?

Probably not much in her case since she's already told me how to construct a bomb and blow up your office!


Observations

1.

We live in a country that likes to drop bombs, both literal and figurative, and then clean things up and rebuild afterward. This observation pertains to wars (Iraq), vaccination "science," cancer treatment, pharmaceutical companies, the medical-industrial complex, the tobacco industry, fast food companies, anti-obesity efforts, etc.

2.

When you engage with A Neurologist, you have to do a certain amount of suspending your belief that these are people with advanced degrees and therefore able to make intelligent inferences that don't involve their egos or ties with certain pharmaceutical companies.


3.
(in response to SB277 passing through committee)

I'm interested to know if the California government plans on chasing down those families who choose to delay or decline vaccinations for their children and themselves. Will they carry syringes as they run after us? Will all public places be verboten for those of us who refuse to get a mandatory flu shot? Will herd immunity be strengthened? I saw a pig fly the other day.

4.

Obduracy and control go hand in hand.


5.

On Friday I will be attending my 17th Individualized Education Plan for Sophie, and other than expressing my gratitude to her teacher and aide, I don't give a shit what happens in it. I plan on bringing donuts and, perhaps, a flask of bourbon. I will, as usual, wear a leotard and do my customary tightrope walk routine.***

















*All questions are factual. Answers were inside my tiny little mother mind.™

**All observations are from my tiny little mother mind™ and should only be construed as opinion, except for the first part of Number 5 about gratitude and not giving a shit. Those are facts.

*** More observations on what happens at this meeting are forthcoming.

Fycompa, Blue Person Syndrome and Homicidal Ideation

So, I didn't tell ya'll about the conversation I had with The Neurologist the other day when I took Sophie to a routine appointment there. We talked about arranging an ambulatory EEG, and somewhere in the discussion I asked her what the new drugs in the pipeline were looking like. I asked her about that drug that makes your lips blue and she laughed, ruefully. It's obviously a hard sell, she said. I still remember the titters that followed a discussion of this drug, Potiga, by an eminent Neurologist From the East Coast at last June's Epilepsy Pipeline Conference. They made me sick. That side effect is called Blue Person Syndrome. I'm not making this up. If you're one of those folks who believe in Science As It's Practiced in The Greatest Country On Earth, read about it here. If you're like me and believe yourself to be a part of a lifelong Monty Python skit, take my word and read on.

Anyhoo.

Evidently, there's another drug that The Neurologist is going to try on a few patients. It's called Fycompa. Some of you long-time readers or epilepsy drug enthusiasts might remember that I wrote about this drug a few years ago when it was newly approved by the Almighty FDA. In fact, it was over two years ago that I wrote that post. Please click on it and read it, particularly the end because -- well -- because I told you to.

Are you finished?

Remember that I wrote that in 2012. Sophie was 17. Back then,The Pediatric Neurologist and I batted around the idea of trying it for a bit, but I just couldn't do it. It had become my philosophy to decline all new drugs for Sophie's seizures unless Jesus Himself offered it to us. Cannabis was not even a twinkle in the eye of -- well -- no one I knew back then.

Are you still with me?

So yesterday, February 10th, 2015, The Neurologist brought Fycompa up but also shared with me that THEY (always capitalize the word THEY when you're referring to The Medical Powers That Be, The FDA, The CDC, etc.) have learned that the drug can cause homicidal ideation or rage. Before we start wondering how, exactly, THEY figured that out, let's look at the website for the drug (the banner at the top of the website is reproduced above without the words because apparently THEY don't like you copying THEIR pictures). If you did your due diligence, my post from 2012 highlighted the following side effects of Fycompa:

The drug does have some known adverse effects associated with this drug. The most common ones are anxiety, confusion, imbalance, double vision, dizziness, gastrointestinal distress or nausea, imbalance – some of which may lead to falls on some occasions, and increased weight. The effects of Perampanel on tasks involving alertness and vigilance, such as driving, were additive to the effects of alcohol itself. Multiple doses of Perampanel increased levels of anger, confusion, and depression, particularly when taken with alcohol. Fycompa may lead to euphoria and other similar feelings in some patients. Thus, the drug will be scheduled in the United States. Final labeling and information is not yet available.

As you can see, euphoria is enlarged by me because it's sort of an operative word. 

Now go back and look at the Fycompa website today and notice the new BLACK BOX warning:

WARNING: SERIOUS PSYCHIATRIC AND BEHAVIORAL REACTIONS

• Serious or life-threatening psychiatric and behavioral adverse reactions including aggression, hostility, irritability, anger, and homicidal ideation and threats have been reported in patients taking FYCOMPA
• These reactions occurred in patients with and without prior psychiatric history, prior aggressive behavior, or concomitant use of medications associated with hostility and aggression
• Advise patients and caregivers to contact a healthcare provider immediately if any of these reactions or changes in mood, behavior, or personality that are not typical for the patient are observed while taking FYCOMPA or after discontinuing FYCOMPA
• Closely monitor patients particularly during the titration period and at higher doses
• FYCOMPA should be reduced if these symptoms occur and should be discontinued immediately if symptoms are severe or are worsening

Keep reading about suicidal ideation which THEY make pains to attribute also to epilepsy itself. The cynic in me or maybe just the batshit crazy person in me believes that THEY are covering their asses. Basically, epilepsy and depression are roommates, so if you up and kill yourself one day while on Fycompa, I imagine THEY will point out that you might have anyway, without the drug.  Notice as well that this drug is a Schedule III drug and remember that it is being prescribed for children and adults aged 12 and up. Remember that Marijuana is a Schedule I drug and that many in The Neurology World have denied many children who suffer from refractory epilepsy their blessing to try it and are only slowly coming round to even calling for studies, and that's only because families like mine are on the train that's left the station and THEY are trying to catch up.

But I digress.

My other favorite statement on the website is this: Anyone considering prescribing FYCOMPA or any other AED must balance the risk of suicidal thoughts or behavior with the risk of untreated illness.

Fycompa basically went -- in two years -- from being a drug that can cause Euphoria And Other Similar Feelings to one that can cause a person taking it to fly into a murderous rage. Oh, and you can take the drug if you're twelve years old.

You'd know what was up, basically, if I decided to try this drug on Sophie. Go ahead and kill me now, I'd say as I gazed into her big, dark eyes.

I can't count the number of times over the last couple of weeks I've read the words of citizen scientists, of scientists, of doctors and journalists and mommies and daddies and presidents and Oprahs and Willy Wonka himself blathering on about their trust in THE DATA AND THE EXPERTS.

What's my point? I think you know it. This is my experience, and I'd venture to say that it's tens of thousands of other people's as well. These are the facts. This is the world I interface with every single day and have done so for two decades, and it's insane.

Waiting

There are days like today when the waiting seems more than ridiculous. The waiting seems not only interminable but insane. We waited for The Neurologist and then we waited for Blood-work. We'll wait for results.

We've been waiting -- for what? -- for twenty years.

The desire to flee, to shove the baby under my arm, the toddler into a backpack, the child onto my back, the young woman into her chair and to just run the hell away is so strong that to fight it would be death.





I did an interview with a journalist this past weekend who is writing a story for National Geographic about the vaccination "debate." They wanted to cover the story of a family who believed in vaccinations and whose child had a negative reaction to a vaccine and therefore decided to delay their other children's vaccinations. I consented to the interview because I want to change the tone of the "debate." In response to a few questions, I pulled out some old documents in Sophie's medical file and found a small journal that I had kept beginning in January of 1995. I don't think I've looked at it in eighteen years. Sophie was born on March 8, 1995. On May 3, I wrote this:

I had a couple more entries and then this:

The rest of the journal consisted of precise notations of seizures and medications and every tiny little bit of behavior that we noted and noted and noted as we waited for things to get better.

I pulled out Sophie's vaccination record for the journalist as well -- that hideous yellow card buried in a file at the back of the file cabinet. I was stunned by the progression of events. I've never written about that, but I will. Wait on that.

Ironically, the past few weeks have turned my inchoate fear into a strengthened resolve. The journalist asked me whether the CDC or Powers That Be could do or say anything to sway me to agree to vaccinate my children by their dictates. I said, No. I said that they could continue to work on vaccine safety. They could do studies on the long-term health of the unvaccinated (it's been my direct experience that my two boys' health has been extraordinary compared to the general health of my friends' children and I'm curious to know whether this is an accident or something to think about in an immunological sense). I said they could acknowledge the risks of vaccines, and the many children and adults who have suffered from them, like Sophie. They could wait before whipping the country into a ridiculous fervor. They could disengage themselves from The Business of Medicine. They could acknowledge their mistakes. They could make amends. As for the herd? I said, Bless their hearts.

How to remain sane

procured via the internets by using Google and keywords vintage, female brain

1. When I begin to wonder what would happen to Sophie's health insurance should the Repubs and Libertarians repeal the Affordable Care Act, stop (wondering).
2. Scroll through Facebook only twice in a day, except if someone private messages me
3. Unfriend anyone who uses sarcastic or unkind language about people who choose to delay or not vaccinate their children.
4. Unfriend anyone who checks LIKE on any of above status updates or contributes their own sarcastic or unkind language on above status updates.
5. Listen respectfully to those who roll out the usual tropes and cliches about vaccinations but who maintain civility and understanding without condescension
6. Delete Buzzfeed, Huffpost and other half-assed, biased online news sources that dumb down every single issue. 
7. Never read any of #6 publications again except if there's a story about Dean Smith or Javier Bardem.
8. Admit to myself that #3 and #4 are the only way to not feel nearly physically ill and hurt even though I understand it's not personal.
9. Realize that most of the people who I've unfriended are really not friends, anyway, and it's better for all of us
10. Wonder about that phrase the personal is political again, especially in the context of #3, #4 and #5 and stop (wondering).
11. Remember how much I fought with my sister in high school, how much I disliked her and how much I love her now
12. Meditate every day for twenty minutes
13. Nurture my brutal sense of humor by re-reading Lorrie Moore's There are no people like that here: canonical babbling in peed-onc 
14. Stick to work -- to writing, to reading, to caregiving
15. Take a walk every day
16. Eat good food and drink good coffee
17. Remember old lovers
18. Whisper thank you to the blue sky, the balmy breeze, the golden sun, the warmth on my bare arms

Reader, how do you remain sane?

Dispatch from the Cannabis Revolution: An Update from the Mermaid Files

Santa Monica Blvd.
February 2015

This morning Sophie refused to put weight on her right foot again. She had not had a seizure, so I don't think it was neurological. We couldn't deliver her to school like that, so instead I called the osteopath and got an appointment for later in the afternoon. Sophie took a short nap and woke up, put her foot down like usual and walked. Honestly, reader, it's crazy.

Speaking of crazy, I'm both energized by the support and love sent my way regarding this whole measles thing and suffering from what I think might be PTSD-like symptoms. I'm always amazed by the arguments people make, by how they choose to state their opinions and with what sort of authority. When I'm not retching, I'm laughing at people's trust in "scientific studies," and it's not a jolly laugh. I like to point out that after getting a fever and screaming for three days straight a few days after her initial vaccinations, Sophie, at a little more than two months of age, started doing weird things when she woke up and I tried to nurse her. When I took her to the doctor, she referred me to a neurologist, just in case. That's what she said. The neurologist couldn't see her for THREE MONTHS. Yes, that's the way the healthcare system works. A friend of mine who happens to be a billionaire (I'm not kidding) arranged for me to see a neurologist immediately (a week or so after the pediatrician ordered it), and Sophie was diagnosed with infantile spasms a few hours later. Yes, that's the way the healthcare system works. Then began the odyssey of 22 drugs and non-stop seizures -- but WAIT! I forgot to tell you that Sophie was IMMUNIZED AGAIN, at four months, with all the necessary vaccinations except for the DPT (in those waning days of the last millenium, the Pertussis vaccine was live, and they had determined that it was too risky to give Sophie again. Now it's acellular and called the DTaP). Sophie was immunized despite the fact that she was being weaned from high-dose steroids that we ironically had to give her through twice-weekly intramuscular injections and on a powerful non-FDA approved anti-convulsant. I think even the vaccine fanatics would agree that this was not a good medical decision. Shortly afterward, her fontanel began to bulge, she was rushed to the hospital, given a spinal tap and then diagnosed with a strange and rare complication called pseudo-tumor cerebri. The treatment for that was four more spinal taps to relieve the pressure on her brain. She was five months old.  I was 32.

Did I mention the 22 drugs over the next 19 years? Yes. How many of those drugs, taken in combination and given to an infant and then a toddler and then a young child were studied in such combinations and assessed rigorously over the long term? Guess.

ZERO, with an accent aigu and pronounced like the French do, quickly followed by what my Swiss German husband would say: Null, Null, Null (pronounced noool)


You know the rest of the histoire. Sophie will be 20 in March. I am 51.


Meanwhile, Sophie's seizures have dropped dramatically -- AGAIN! -- and while I'll knock wood three times to not jinx it, I think the Charlotte's Web higher ratio hemp oil is doing the trick. We've fiddled with the dosage and even weaned her a bit more from the benzo as well. Early reports (the much-maligned anecdotal ones) indicate that the children who do the best with cannabis are those on the least amount of drugs, particularly the benzos. Given that Sophie has been on Onfi for more than seven years and a pretty giant dose, we're weaning her very slowly. If all goes well, we'll start weaning her from Vimpat which she's also been on since it was approved for use in ADULTS in 2008. In 2008 Sophie was thirteen years old. It's unfortunate that the opportunity to try this medicine (which can be made from a plant by literally, anyone) is currently stymied by the unique collusion of politics/Big Pharma and physicians.

Listen to me. My faith in science is secure. My faith in the American medical system as it currently operates is ZERO, with an accent aigu.

Null, Null, Null

Yesterday was an upsetting day when the trivial medium of Facebook became heavy, weighted in pretension. The stomach churns, acquaintances repel and are repelled.

Fuck all a ya'll, the guy said in that movie about the American pharmaceutical industry and Other.

Henry's foot doctor said, as he probed in his big toe, There's no certainty with this stuff, and don't let anyone tell you otherwise.

We were talking about the hysteria over the measles outbreak.

That's it, someone said, if you don't vaccinate your kids, you can't be my friend.

The luxury of feeling in control.

What else? I read a little blip on the Poetry Foundation website that resonated. Her poetry is generative, a poet said. Generative.
That's exactly it. I'll read and participate in what's generative, and I'll discard and dismiss what's not.

"Science is More Than Equations or Experiments"

Last night a friend sent me a link to a video of a man telling a story as part of The Moth presentation at the World Science Festival last May. The Moth is a national storytelling platform where ordinary people tell extraordinary stories, on the fly, in front of an audience. If you've never heard of it, you should check it out. On the web page, the World Science Festival noted  In keeping with Moth tradition, all stories must be told within ten minutes, without notes. Their stories are a reminder that science is more than equations or experiments; it is a window to humanity, a quest for understanding, and, often, a way of life. The participants included a geneticist who had discovered a breast cancer mutation, the White House chef, an archeologist, a neuroscientist and Brian Hecht, an entrepreneur whose story of planning his bar mitzvah was brilliantly used to convey his life as the sibling of a brother of a boy with severe epilepsy damaged by a vaccine.  

I so needed to hear this, particularly after another bruising incident with people who call those of us with more measured responses to vaccination dumb-assess and immoral.  Hecht's performance is particularly poignant as well because it recounts his own coming out as a gay man. It's about caregiving and the incredible burdens that some are called to bear. What it says about our very human need to control is a profound reminder. I won't expect that those who would call others dumb asses would watch it and be changed, but you never know. In the meantime, I feel affirmed, if not devastated. Thank you, Jill, for passing this along to me.

Green Shells on Treetops and Vaccinations

That's a Manus Green Papuina, a rare snail from high tree tops on Manus Island, off the coast of Papua New Guinea. No I did not find it lying in the sand next to the Pacific Ocean. I peered at its outrageous green through plate glass in a rare shell exhibit at the Museum of Natural History today. Oliver and I had a field trip -- mainly to do an evolution/adaptation project in the Dinosaur exhibit, but we also paid a visit to the shell collection and the gem and mineral exhibit in hopes of finding some pearls which would round out our reading of Steinbeck's The Pearl. There were no pearls. But that green! Outrageous! The universe is abundant!

I also baked two loaves of banana-coconut-chocolate-chip bread and made one big pot of Mulligatawny soup and some jasmine rice. I responded to someone's Facebook post about the recent outbreak of measles at Disneyland, not because I wanted to get into an argument but because this person asked the question why people don't vaccinate which then provoked the usual nasty and sarcastic replies about how stupid and immoral they are, that then provoked my indignation and real desire to let people know that not everyone who refrains from vaccinating their children is an immoral idiot. Sigh. I wrote my last post on this issue here, so if you want to read it, you can. Since I wrote that post, as planned I've begun vaccinating Henry slowly and judiciously, so if you're new to the blog and generally restrict your reading to mainstream media, are getting all freaked out that this is some crazy person writing, you can rest assured that he isn't a danger to the larger community.

Anyhoo.

To tell you the truth, I feel like wolfing down both loaves of bread which would probably be considered emotional eating, no? Instead, I am going to contemplate that beautiful shade of green and the creature that lived inside a shell, high on a treetop on a tropical island, slow to respond and basking unaware in its own beauty.

Jumping into (again) the vaccination fray (at the edges)

Last March, I wrote a post that I titled Why I Am Not Irresponsible, A Jerk, A Moron, A Fucker, An Anti-Vaxxer Worthy of Your Contempt with an Addendum. You can read it here. Other than a post that I wrote about six years ago that I titled Big Guns (which was about some new seizure medication we were going to try, but you know all the gun nuts were googling that term), the vaccination post has received the most hits -- thousands and thousands of them. I wrote then that I wouldn't ever write about the subject again, but here I am with a bit more to discuss, prompted not only by the latest tiresome admonition from a Facebook friend and her friends to vaccinate your kids, damn it! based on a cheesy article in The Hollywood Reporter, but mainly to discuss a Medscape article that appeared in my email this morning. The title of the article is Most Vaccination-Onset Epilepsy Has Genetic, Structural Cause.  Unless you're lucky enough to have a Medscape account (reserved for those of us who hold out hope that we'll discover the reasons for why our children seize or develop any number of horrifying diseases by staying on top of things), you might not be able to read the entire article, but the gist of it is basically in the following two paragraphs:

In most children whose epilepsy started following a standard vaccination, there's a genetic or structural cause, and about a third of cases of epilepsy triggered by a vaccine are relatively benign, a new study suggests.

These results indicate that vaccination-related epilepsy doesn't necessarily have a poor prognosis, said lead author Nienke Verbeek, MD, clinical geneticist, Department of Medical Genetics, Division of Biomedical Genetics, University Medical Centre Utrecht, the Netherlands.

The findings, added Dr. Verbeek, should come as a relief to clinicians and parents and increase their confidence in vaccination.

I found the rest of the article interesting and compelling because it addresses something other than the autism/vaccination clusterfuck -- namely, that vaccinations do carry risk, particularly if a genetic/structural abnormality exists. While the article might be reassuring to some (and I believe that was its intent), I can't help but wince at phrases like relatively benign and doesn't necessarily have a poor prognosis for obvious reasons. I balked at the explanation that a child who began to seize after vaccination would have begun seizing anyway, if he has a congenital abnormality or genetic predisposition to do so. There's something casual about the language that terrifies me, perhaps triggers some deep, learned response to trauma and the disconnect I felt very early on from the people in positions of power. There is no discussion of those whose seizures are not relatively benign or those whose prognosis is necessarily poor.

In an argument I got into most recently on a friend's Facebook thread, I was accused of "seeing only what I wanted to see." This person also took offense to my admittance that I wasn't entirely trustful in Science and the Powers That Be. She said, and I quote directly, When I make medical and safety decisions for my children I ONLY want science and academia informing those decisions. Let's face it -- about then I cracked up with both laughter and residual insanity from two decades of dealing with science and academia. I think I might have flippantly told her that I envied her faith because it implied she had never had it tested. My feelings about Science with a capital S have evolved over time, and trust me when I say that it's not a great lesson to have "learned." I guess you could compare it to the statements that very old and wise people make about how the older they get, the more they realize that they don't know shit. I imagine that many of us who have struggled with the medical system and how it treats and studies chronic illness have the same reservations, and I'm not sure if that will ever change in spite of Medscape's earnest attempts to do otherwise.

When I right myself from the intial reaction after reading the Medscape article and study, though, I have some questions. One of these is: What if we had known that Sophie had a congenital abnormality or genetic condition that predisposed her to seizures, so we waited to give her vaccinations in the hope that she might get a bit more development under her proverbial belt before the odyssey of drugs and seizures that would hypothetically be her future? The earlier seizures begin, the poorer the prognosis for development -- for obvious reasons. Children who develop infantile spasms at a later age than Sophie (three months), who have already learned to walk, let's say, or even to say words, can sometimes retain those abilities, particularly when their seizures are controlled. If a three month old baby's brain was given a break from medications and seizures at such a young age, when it eventually did seize, would the parts of it unaffected by prenatal insult be in a better position to compensate for the insult? The brain is elastic, after all.

I'm getting tired here, of typing. This subject always makes me feel physically ill, to tell you the truth. I took a break to speak with a friend who is exploring the use of cannabis for her own 15 year old son who suffers from epilepsy and cardiac issues. She lives in a state where it's illegal, and she's not getting any support from her neurologist, so I'm telling her everything I know, all the anecdotal evidence I have that Sophie's seizures have dropped nearly 95% since she began taking CBD. I wonder if some professional from the land of Science is out there, taking notes.

***Just in case you get your panties into a giant wad on the top of your head or around your neck, I'm slowly vaccinating my sons. I am -- I repeat -- NOT anti-vaccination, but I am -- I repeat -- emphatically dubious that Science has all the answers.

He's tall and he got a shot

So, Henry had his 16 year old physical today, and the nurse had to stand on a stool to measure him accurately. I won't tell you how tall he is, but he's tall, and the doctor pronounced him a perfect specimen of teenage boy. He also told us that both my boys have two of the thinnest files in his practice, and then we all knocked wood three times. Even the doctor.

I love our doctor -- truly love him. When I moved to Los Angeles, pregnant with Henry and terrified not only of having a second baby (long story, most of which you know) but also of trusting that second baby to the medical world that lay in pieces at our feet, this doctor restored my faith. I said that I wouldn't write any more vaccination posts when I wrote Why I Am Not Irresponsible, A Jerk, A Moron, A Fucker, An Anti-Vaxxer Worthy of Your Contempt with an Addendum in March of this year and I meant it. This isn't a vaccination post. You can know everything you need to know if you go back and read that post. And if you have any questions or want to take it outside, feel free to email me. Henry did receive one shot today, and in lieu of walking around with a great, big piece of plywood, I knocked some more wood. I saw little dots and stars dance before my eyes, the kind I used to see when I was a little girl and was about to faint in church (don't ask me why I used to feel like fainting in church), so I closed them and breathed, let myself feel both horrifyingly rooted to the world and dissociated from all the angst and desire and craving and grasping being alive entails.

That's it, folks. I've got a perfect specimen of a teenaged boy, and I'm proud to have helped to bring him this far in this crazy old world.

The Distance Between Things

I dabbed a bit of ointment for canker sores on the white flesh of Sophie's inner lip this morning while she groaned and squirmed. I had to hold her down almost roughly, and that reminded me of holding her down years ago when we stuck those needles in her leg that delivered the drug that was supposed to stop her seizures but didn't. I gave her an Advil for the pain and forced liquid down her throat. These things are harder to do than you think. Later, as I sipped my coffee in a yellow cup, I watched through the still wavy panes of glass in the dining room a bird hustle out of the bougainvillea that grows wild through the cracks of the rickety fence that we share with the neighbors. Tears leaked from my eyes because I was thinking of those shots we gave her and our growing trepidation that the reason why she seized was because of those shots we had given her one month before, the shots that were supposed to guard her from terrible diseases. We could never be sure. Henry was our next baby, and you must understand that we couldn't give him those shots because we were afraid. Maybe you don't understand, and I understand that. Why would you? A tiny plastic figurine in your cocktail sits perfectly in the sea glass some kind person gathered on the beaches in the Pacific Northwest. I will take Henry to the doctor in less than a month, and we will begin to give him those shots, and I will still be afraid. There's only a small distance from a yellow cup of coffee to that kind of fear, a drowning. You should understand. Fear is flung off with anger only sometimes and usually it's rue that dispels it. What if Henry had a seizure following his shots, my mind said next. Would you write a post on it and call out those who had mocked you and others like you? It's a short distance from The Mermaid in her glass dome to Dante's Inferno, right behind her.







***I've decided to drop the comment feature for this post, because to tell you the truth, I don't want to read them. Thank you for your patience.