Holland Outliers (a rewrite)

Joshua Tree in a Dress, California, 2016

Truth always rests with the minority, and the minority is always stronger than the majority, because the minority is generally formed by those who really have an opinion, while the strength of a majority is illusory, formed by the gangs who have no opinion — and who, therefore, in the next instant (when it is evident that the minority is the stronger) assume its opinion… while truth again reverts to a new minority.

Soren Kierkegaard

The vaccination posts keep popping up again, faster than I can delete or hide them. Children sent home from school for not being fully vaccinated, cheers! it's about time! the gloat, the confidence. Erasure. When minority voices are made quiet, darkness prevails. 

I'm not going there, the old familiar sickening quickening.

(a re-working of an old post)

We're tribal people, and many moons ago I read a signature piece for the parents of the disabled called Welcome to Holland that I keened toward for about one moon back in the darker days of the last millennium when things were passed mouth to ear, a paper from hand to hand, and then crumpled up as I crumpled, lit it with a match, burned a few animal gods in sacrifice and threw it to the wolves. My tribe left Holland behind and ranges loosely at the borders, howling at every moon whether full and shining or slivered, letting in only cracks. Sophie's summer school teacher sent home a progress report one year, something I'd normally only glance at in scorn because, really, what's the point? Our tribe resists the denial, doesn't welcome false blessings, looks for grace in contrast. Somehow, this small report of A: Produces markedly superior work and E: Excellent citizenship meant something. Under Teacher Comments: A pleasure to have in class!, the exclamation point seemed merciful. I fell back from the tribe for a moment, long-shadowed, the moon's pull, the tide washed over me, outlier.

Making Space for Stories (and an updated embed)

Those are new Benzo-Withdrawal Drool Bandannas that I ordered online. I couldn't resist the marijuana leaf one and hope it has extra powers as it wicks away the vile drug that permeates Sophie's body.




I don't have much to say or write today. I've been thinking a lot about an article I read in Philly Voice about vaccinations. The writer, Amy Wright Glenn, is a pro-vaccine journalist and mother, but she addresses those of us whose children have been injured or killed by vaccinations with unusual gravity and admonishes those of you who would argue against our beliefs and stories. Here is a brief excerpt:

Unfortunately, it’s easy to disregard the stories of vaccine injury, disability or death as statistically insignificant or inconsequential. Collectively we fiercely embrace a utilitarian ethic with regard to vaccine injury. The stories of families suffering serious injuries are too often ignored, discredited, used to further anti-vaccine campaigns, or quietly accepted as a type of collateral damage in our noble war to eradicate the scourge of infectious disease from the planet.

I will say that this is, perhaps, the only article or opinion I've ever read on the issue that doesn't make me literally sick to my stomach or provoke what I can only call post-traumatic stress syndrome. Those overwhelming feelings come no matter the position, and after twenty years I'm only dimly aware that they are, perhaps, related to deep and damaged feelings of not being heard.

One safeguard against a decrease in vaccination rates is the public ridicule awaiting those who question the ever-increasing number of required immunizations. Even parents who were formally compensated by the vaccine court report feeling ridiculed. For example, in 2006, Florida couple Theresa and Lucas Black received a $2 million settlement along with $250,000 a year for medical expenses from the vaccine court. Why? Their 14-year-old daughter Angelica is permanently and profoundly disabled after receiving a standard round of inoculations at 3-months of age.

No matter how many times I try to reasonably talk or write about this issue, even going so far as to allow a renowned journalist to interview me and take photos of my family for National Geographic Magazine, I've never been able to convey what Ms. Glenn does so beautifully in her opinion piece. I know that's because of the emotion I feel and convey, natural given my own experience. I hope that you'll all read this piece, even those of you who joined in the social media mockery early this year or who believed that those of us who choose not to vaccinate our children or who do so on a different schedule should be vilified or mocked or pay fines or whose children should be kept out of school.

Nineteenth century British philosopher Jeremy Bentham argued that an action is morally permissible if it serves to increase the greatest good for the greatest number of people. Contrast Bentham’s utilitarian ethic with German philosopher Immanuel Kant’s deontological, or duty based, moral theory. According to Kant, individuals are not means to be used to justify an end, no matter how pleasing or far-reaching such an end may be. Individuals are “ends unto themselves.” In other words, we have value independent of our usefulness to society. 

Thank you, Ms. Glenn, not only from the bottom of my vast heart, but also from the top of my head and my intricate, mysterious brain. You have made space for our story.

Given these legal and market-driven realities, we must make space for the stories of families who pay the price of our increasingly mandated utilitarian ethic. 

Watch this, my pretties. It happened today in the United States Congress:

On Condescension and Mama Bears

via USA Today***

The National Geographic article has re-appeared. Evidently, there were technical difficulties, but they seem to be resolved. No sooner had it gone back up than the conflict arose, again, and, again, I am drawn into it like the proverbial fly to shit. Excuse my French. Someone posted a link to the article and provoked a stream of comments on her Facebook page, many grateful for the perspective and nuance of the article and my experience, but many filled with the sort of condescension and patronisation that is particularly irksome. Here's one comment:

I hear you, I am just stating that if the anti-vaxxer were placing my children at risk, I would be angry and unkind and would not care. However, if I were discussing vaccination with an anti-vaxxer in a venue that was not placing my children at risk, I would be civil--and would hope others would be as well. 

The woman who posted it called herself a mama bear because that's how much she cares for her children (as opposed to someone like myself who couldn't give a shit). The parenthetical phrase is mine, by the way.

Let's get something straight. I am the first person in the universe to claim that one of my many faults is a tendency toward  -- or let's face it -- outright condescension, and while it's often an unconscious tendency, when I'm called on it, I'll agree and apologize. I am always trying to do better. I need to do better. Given that it's a fault of mine, I also wonder if I'm particularly sensitive to it when it's directed at me -- particularly when it comes to this vaccination issue. I've had a lot of well-meaning people post the link to the National Geographic article with the following attachment:

I'm completely pro-vaccination, but...

or

I've vaccinated all of my children and believe everyone should vaccinate their children, but...

or

You're exactly the reason why everyone should be vaccinated, so we can protect your kids!**

and

I'm vaccinating my children so that you don't have to vaccinate yours. (One woman who repeatedly commented on the National Geographic site, insisted that I thank her for providing my children with protection, i.e. the arguable herd immunity theory).

The buts are sometimes caveats that well-meaning people include so that we understand that though they're being "open-minded" and appreciate my story and perspective, they also want others to know that it's implicitly wrong. Sometimes, the but is used as a protective device because they don't want the usual vitriol heaped upon them. I get that. I've used it myself.

Here's the thing. I'm a mama bear, too. I'm sick to death of patronisation and condescension. I'll be damned if I'll let a scientist, a doctor, a mother, or a government entity patronize or condescend to me. This sinking feeling, the jittery, nervous thing I've got going whenever I even visit this issue which is a lot, lately? It's the feeling of being unheard, of being truly unheard in the face of money and business and the unknowable. It's the feeling of being powerless and ineffective.  It's a mama bear falling out of a tree.

*I've used the image before, and the short piece that it inspired was published online. You can read and listen to it here.

** Read this article by a woman who contacted me today. Read her credentials and look at her research.. Don't Vaccinate to Protect My Cancer Kid

Still Searching for the Reason Why National Geographic Censored/Killed the Vaccination Article

I know that most men, including those at ease with problems of the greatest complexity, can seldom accept even the simplest and most obvious truth if it be such as would oblige them to admit the falsity of conclusions which they have delighted in explaining to colleagues, which they have proudly taught to others and which they have woven, thread by thread, into the fabric of their lives.

Leo Tolstoy 

I consented to that interview, to those photographs and to allowing that magazine to probe into some of the most upsetting events in my family's life. I consented to that interview with the hope that I could play a small part -- however infinitesimal -- in changing not the debate itself, but rather the tone of the debate. I thought that the writer Karen Lowe did so, and that by publishing her story about our conflict, our experience, our story and our truth, National Geographic was doing some real unbiased reportage that showed nuance, something out of the ordinary and in fact, quite extraordinary.

I guess I'm wrong. Despite the fact that the article got nearly two hundred comments on the website for the short time that it appeared after February 14th, as well as thousands on its Facebook page and many hundreds of "shares," when you click on the link now, a blank, white page comes up with a couple of ads marching along on the top. Navigate the Sea of Cortez By Night, one reads, and SUBSCRIBE FOR ONLY $12 says another.

The magazine has not replied to my inquiry about why I can't access the article, and I'm still waiting to hear from Ms. Lowe who is waiting to hear from the magazine.

Shut down, whited out, censored, the low smolder whose heat nipped -- just barely -- at the fabric of my own life is now a cold, steely resolve.

Another Episode of Smells Like Bullshit (because, really, it's been some time since I've smelled it)

I'm shocked, shocked to find that gambling is going on in here!

Captain Renault in Casablanca 

I contacted the writer of the article in National Geographic to ask her why it had disappeared from the pages of the website, and she wasn't aware of it. She evidently contacted her editor who checked and claimed that "the article was dumped while working on the web design."

I'm going to be honest, here. 

It smells like bullshit.

All the other articles in the series about vaccinations are still up on the site (the one about our story was published on February 14, 2015)

The Anti-Vaccine Generation: How Movement Against Shots Got Its Start

published on February 6, 1915

Why Do Many Reasonable People Doubt Science? 

published in March 2015 issue

Measles Are Back: Key Questions and Answers on Disease, Vaccinations

published January 23, 2015

and so forth.

I also can't find the conversation that was on the National Geographic Facebook page. Last time I checked, it had over 350 shares and thousands of comments, many of them the usual ugly.

Reader, what do you think?

I'm thinking about burning some books.

Silenced?

So, about a week ago a few people contacted me to ask what had happened to the National Geographic article about our family's decision to delay the vaccinations of our sons. When you click on the links, the page comes up blank. I saw many hundreds of comments on the National Geographic Facebook page, and they weren't pretty. I can't find them today. I reached out to the writer, Karen Lowe, and she wasn't aware of it but told me that she'd check.

I'm wondering what's up, imagining that The Powers That Be don't want a story about a family who makes responsible but controversial decisions about their children's health on the sacred scientific pages of National Geographic. I could be wrong, though, and just another insane, stupid, immoral and irresponsible anti-Science conspiracy theorist.

Interesting.

Take a Deep Breath and Change the Conversation Along with National Geographic

photo by Emily Berl for National Geographic

While I wouldn't say this article does justice to my deep feelings of betrayal by and mistrust for the American public health and medical system, I am grateful to Karen Lowe and Emily Berl for their sensitivity in reporting this story about our family's experiences. It was a tumultuous week for me leading up to and even after being interviewed. Reviewing such a traumatic time and even re-discovering the facts -- that Sophie was vaccinated, suffered a reaction and was then re-vaccinated two times even as her immune system was decimated by high-dosage steroids -- disturbed me on perhaps a deeper level as it came all at once, not tempered by the years and years of crisis and caregiving. As the days go by and the hysterical media as well as more-hysterical citizen scientists, and friends have moved on to what's new and exciting, I feel calmer and less wounded even as I contemplate the draconian calls to coerce the population into vaccinating their children.  When I agreed to this interview, my intent was to help to change the tone of the discussion, and while I don't believe the article really addresses my very grave doubts and mistrust in the vaccination program overall, I think it does justice to the need for a more compassionate discussion, and I appreciate that National Geographic has made an attempt to do so.

Here's the article.

And mark my words, there's more to come here.

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.

The Hypothetical, With Answers**

Question: 

How would you feel if your unvaccinated child gave another child the measles?






Question:

How would you feel if  vaccinating your child meant that someone will pay a price for your child's immunity and that that price will be a lifetime of uncontrolled seizures, drained resources, developmental disability, complete dependence and death? 



















**Answer Key (unnecessary for all those who are certain of anything in this world)

1. Very, very sad.
2. Very, very sad.

Dealing with The System and The Book of Change

I've started throwing the IChing these days almost daily when I'm stumped by someone or something. I'm not Nancy Reagan, who evidently resorted to divination as a way to advise her husband in world affairs (don't quote me on that, though), but I have to say that the principles of what Jung called synchronicity are wildly informative and resonate for me. The simple ritual of asking a question, throwing the coins six times and then reading the hexagram is enormously healing in this weird, can't quite put my finger on it way. How should I respond to all this vaccination hysteria, my own near-PTSD symptoms because of it and the obduracy of people who refuse to believe there is nuance in science and the American healthcare system?***

Someone suggested that it's in the raging waters that one finds the answers. That was a perfect response to my post the other day where I alluded to the witch hunts of the seventeenth century and the particular practice of throwing the woman in question into a raging river to test her faith. If she drowned, she was a witch. Evidently, God doesn't answer the appeal of a witch or a real witch wouldn't call on God.

I might be a real witch.

Remember when I told you that after dealing with The System for twenty years, I've learned to do one thing a day? Otherwise, I'd go completely insane and jump into the raging river rather than be pushed. Right now, my task is to get MediCal to cover Sophie's drug deductibles. Evidently, this should have been happening for about five years which might have saved me tens of thousands of dollars, but the process to figure out where the snarls are, what the hold-up is, who's in charge, for what and when and how -- well -- it was too much for my little brain. Last week, though, I had a breakthrough. The pharmacist did a little legwork and MediCal denied it because they needed more information. I got through to find out what more they needed. They needed a list of drugs that Sophie had been on to prove why she needed Vimpat and Onfi -- just in case her neurologist was only idly prescribing these drugs when there were cheaper ones to be had. On Monday, I emailed The Neurologist and asked her whether she could draft a letter stating Sophie's drug history -- basically proving it. I gave her a sample letter, just to help her out. Can you imagine how much shit these doctors have to deal with regarding MediCal and private insurers? On Tuesday I called the pharmacist to tell him to hang in there. On Wednesday, I paddled around in the raging river a bit. Today, The Neurologist emailed me the letter (which you can see above), attesting to the many drugs Sophie has been on in her life and the necessity for the two that she's on currently.

Tomorrow, I'm going to call in a refill for the drugs and see what happens. I know you're on the edge of your seat, Reader, so I'll keep you posted.

I'm wading in.





***Hexagram 64

Before the End

The accomplishment of a goal is in sight. It appears that long-impending matters may be brought to fruition with an acceptable amount of effort. Increasing clarity surrounds the meaning of situations once thought to be obscure. At the time BEFORE THE END there is great promise for the future.

A unique and sage viewpoint is present in human affairs. Order can be brought to chaotic situations. Because you are now unusually familiar with the elements involved int he object of your inquiry, you can evaluate and arrange them in whatever way necessary to achieve your aim. It should be a relatively simple matter to bring together groups of people in social or public-minded situations. By penetrating the psyche of each individual involved, you can arrange to gratify their needs within the group mechanism and thereby gain their co-operation....

Yet, it would be a mistake to imagine that by achieving your aim you will bring matters to a close, that good judgement and order will prevail. The time BEFORE THE END can be compared to a lengthy trek over a high mountain. At some point, before reaching the peak, you can see in detail exactly how much further you must travel. You will know what is involved in reaching the top because of your experience in the climb so far. However, when you do reach the peak, which has been in your sight for many long days of effort, you will have done only that. You will have acquired little information and no experience whatsoever about the descending the other side. To rush up and over the top in an overly confident manner could bring disaster.

...The coming situation will be strange to you in every way, unike any that you have experienced. In the near future you will not be able to draw upon the wealth of your acquired experience, for in many ways the time will be nothing short of a rebirth.

"What Clusterf*^k F*^kery,"

Salem witch trials

she said as she thrashed in the raging river into which she'd been thrown. No higher power came to her aid. Guilty as drowned.

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.

Things that bore me

Last night, the telephone rang and a nice lady asked me whether I'd answer a series of questions for a survey about public opinion and ratings for social media programs and children. I said that I would, and answered amiably for a few minutes until the questions got more and more in-depth about the need to provide ratings for apps on phones and tablets that children download. And then I realized that I really didn't care about the need for ratings for apps on phones and tablets and that it bored me to tears, so I hung up. And then I thought about what else bores me in this world, even as I did what some people might think of as mind-numbing, like cleaning up the kitchen, folding laundry, changing an adult child's diapers and putting on her pajamas, drawing up cannabis oil in a syringe and shooting it into said adult child's mouth, telling The Brothers to pick their wet towels up off the floor, letting the dog out and musing for the millionth time about how perfect the back stoop would be for a smoke, but I don't smoke.

Here are some things that bore me:

1. Long conversations about how social media, cell phones, Facebook and the internet are destroying our capacity for community, particularly for our children. I think this is largely bullshit and probably more a case of old-fashioned projection. I think, too, of the worlds that have opened for people with disabilities, for the caregivers of those with disabilities (ahem), for the blending borders of the great, wide world. I think, too, of the hours and hours and hours I spent alone as a child, with a book, dazed and isolated, immersed in worlds from other centuries, immune from the calls of friends and families (and that wasn't a bad thing, either).
2. Essays on Huffington Post about how people who don't vaccinate their children are immoral, anti-Science, and stupid or are endangering others' precious children yet never acknowledge the tens of thousands of children affected negatively by vaccines. Notice that I said nothing, here, about being anti-vaccination but everything about acknowledgement (and thus my boredom, because in the end it's the not delving into complexity that bores me)
3. Anything, really, on Huffington Post
4. Articles and essays on the mommy wars or anything having to do with the dilemma of women working and not working
5. Articles and essays on different types of parenting, but most especially tiger moms and that whole debate about how bad it is to over-praise your kids or give them trophies when they play soccer in kindergarten as opposed to shoring up self-esteem and teaching resilience
6. Texas public education policies
7. American history (I'm sorry, but other than bits of the Civil War and perhaps the Salem Witch trials, I'm bored by it)
8. biographies of American presidents
9. Christian evangelism (this type boredom can turn into virulence, but that's not the subject of this post)
10. slapstick
11. fantasy novels
12. talking about diets (but I'm not bored by people talking about their dreams)
13. myself, right this moment

Reader, what bores you? And if this bores, you, please let me know because that would never bore me.

Why I Am Not Irresponsible, A Jerk, A Moron, A Fucker, An Anti-Vaxxer Worthy of Your Contempt with an Addendum

November, 1995

I am just afraid.

There have been a slew of alarming articles in the media of late regarding outbreaks of disease -- measles, mumps, whooping cough -- that were largely thought to be eradicated. I won't link to them here because they're readily available anyplace you get your news. The articles inevitably draw a line between those who are responsible, intelligent, morally superior, and of a sound and modern mind who vaccinate their children and those who are jerks, morons, fuckers, anti-vaxxers, and at worst, murderers, who in refusing to vaccinate their children put those who do at risk. The usual celebrities are dragged out to anesthetize us at best and drive us into an insane furor at worst. It's apparent, of late, that the powers that be and their acolytes find the situation so alarming, they've brought out the big guns and just shoot their mouths off stridently with flat-out accusations. Just fucking vaccinate your kids! I read on Facebook the other day. Who are these people? another person asked, I think they're disgusting. When will they feel remorse?Like, like. They should be fined. Like, like, like. Idiots! Morons! 

Nineteen years ago, I vaccinated my daughter when she was two months old. She began seizing shortly after and didn't stop for nineteen years, until a couple of months ago when we began to give her cannabis oil. We don't know whether the vaccinations caused her terrible disorder or whether they were a catalyst for the vicious infantile spasms that eluded every sophisticated treatment thrown at us. Possibly, the doctors told us, then. Probably not, but no more vaccinations for her. 

When our first son was born, we decided with his pediatrician that we wouldn't take the chance that he, too, would have a reaction to the vaccines. We did the same with our next son. At no point were we irresponsible, stupid, murderous, immoral, disgusting, or anti-Science.

We were afraid. We were afraid to vaccinate them and afraid not to.

My sons will probably get vaccinated, slowly, before they go to college, but don't think I won't be terrified. You have not persuaded me to do this with your cruel words, your flaunting of your knowledge, your faith, your certainty and your condemnation. Nor will I do this to save your children. I will do this because I am afraid.

In the meantime, stop telling me that I'm irresponsible, a fucker, stupid, anti-Science, disgusting and only worthy of contempt. Don't placate me with false understanding or a concession to my difference. There are many of us out here.

You might, instead, hold my hand as the doctor slides the needle into my two-month old baby's thigh and watch with me as her mouth makes a perfect O before the scream comes out. You who have babies know that look, don't you? Keep holding my hand a few weeks later when another life begins, when my other hand injects her dimpled thigh with high-dose steroids to stop the seizures that just won't stop. Keep holding it as I walk with her screaming for hours and hours and hours, for days and weeks and years. Place your hand on my back as I stoop over her and use my fingers to pull her shit out when she's so constipated from drugs and fat and cream and sluggish ketones in her blood that she can't do it herself.  Hold my hand again and whisper confidence when I pick her up off the floor and frantically look to see where the blood is coming from -- the base of her neck? the natural part on the left? over her ear? Hold my hand when they bend her in half to draw the fluid from her spine to relieve the pressure in her skull. Sit with me and watch as they slide her, like a tiny wrapped package, into an ambulance, a PET scan. Watch with me as they roll her away. Hang with me and wait for the doctor to call back, for the insurance company to send the check, for the seizures to stop, for the marriage to fail and the heart to scar over.

Stay with me for months, for years, for decades and reassure me that this sacrifice is a noble one.



ADDENDUM:

The brilliant public policy writer and poet, fellow caregiver and friend Jeneva Stone wrote this today as a comment on the above post:

[One] factor that drives the anger on both sides is fear--fear of disability. AND for good reasons--look what Elizabeth and I both live through. NO ONE wants that for their families. What's left out of this public policy argument is that the U.S. is willing to pour billions into vaccination to prevent the many, but the U.S. is NOT willing to support caregivers and their disabled children (the few) to the extent that these families can lead lives of reasonable freedom and normalcy. We're just the "outliers." Until U.S. public policy on vaccination also supports outliers, people will continue to be afraid to vaccinate: the emotional, social and financial costs are unbelievably high for caregivers, and the solution is not, as my brother-in-law once told me, "to become poor." Everyone who is afraid to vaccinate their children can see how badly disabled children and their families are treated: from the lack of accessible housing to social ostracism to financial collapse. We have here the convergence of obvious societal indifference to severely disabled children and an emerging public health crisis. While intellectually I support vaccination, frankly, I empathize with the people who are afraid--why berate them? Redirect your passion to ensuring that people don't have to be afraid to vaccinate because the consequences of disability are so dire. Repair the social safety net--everyone knows it's gone.

Yes, I vaccinated my kids. But I could easily have believed that Robert's problems were triggered by his MMR vaccination, which occurred just before his dystonia manifested. I've spent a lot of time with top geneticists and neurologists: no one will say there's any innate connection between vaccines and the onset of genetic disorders (because that is likely neither true nor responsible), but stress to the body can trigger an innate genetic variant. All of us have variants. Our information about how these triggers work is incomplete, and triggers also include growth, viruses/colds, eating too much protein (or other nutrients) when you don't know your body can't handle it (which led to "basal ganglia meltdown" in one patient). Correct: vaccines are not a probable direct cause of the majority of childhood disabilities, but they may contribute indirectly to early manifestation of genetic disorders. And I don't think the problem should be waved away, as "oh, but that was going to happen anyway" because we also can't gauge the relative impact of early or late onset. Say the MMR contributed to early manifestation of Robert's genetic disorder. Say he might have developed typically for a while longer--developed more speech, say--maybe then I would have had an easier time with educators and fewer doubters about my child's relative intelligence.

And an "oh that was going to happen anyway" is just brushing under the rug another deeply serious public policy problem. NO ONE aside from Warren Buffet has the resources to pay for proper care for a child with severe disabilities--the cost of medicine has risen high enough that it's impossible. No one is more responsible than caregivers are--would you have the patience and commitment to do what we do every day?

The Beatles, Airport Dreams, the NFL, Medical Marijuana, Vaccinations and Octopi

At the Little Santa Monica-Wilshire Blvd intersection in Beverly Hills, I spotted four men with guitar cases and slyly took their photo and imagined them to be the Beatles, circa 1969, Abbey Road.

I dreamt last night that I was supposed to get on a flight to Morocco but couldn't find my ticket. I wandered down stainless steel hallways and knew that the person to call was my father who came to get me. I keep dreaming about planes and trips that I just miss, airports and hotels and frustrated efforts to get somewhere.

I felt bitter when I read about some spokesperson for the NFL, stating that they would consider "allowing" pro football players to smoke pot if it helped with their concussions and brain injuries. Evidently, football players smoke a lot of pot for pain. I imagine the hurdles to help these men will be minimal -- as compared to the legion of families who are working their asses off to get medical marijuana for their children suffering from devastating uncontrolled epilepsy. Does anyone else see the insanity of a sport/industry that gives people debilitating neurological problems yet commands fanatical attention and earns billions of dollars? I hate the American Football Sports Machine and the reek of money and profit. The smell of bullshit is bitter, bitter, bitter.

I read another anti-anti-vaccination diatribe today on Facebook and jumped in the fray despite the futility of it all. This is what I said in response to a person's comment about the "reckless behavior of those who don't vaccinate:"

Yes, those of us who have a child with a severe refractory seizure disorder because of vaccines live every day recklessly as we change their diapers for twenty years, pick them up from the floor where they lie, seizing, give them medications, scientifically "sound" that cause hideous side effects and mull over questions on whether it would be better for our child to die before us or after -- and then have to read the pablum that the mainstream media presents, pitting crazies against crazies with literally no nuance or attempt to understand the very real fears of many of us. My question to you is whether you believe my daughter's life is a worthy sacrifice for the "greater public good" -- I will pass no judgement if you believe this to be so, but I sure as hell pass judgement on those who never once entertain that THIS is what many of us have to grapple with as we make decisions in our families. And I'd add that the acknowledgement of that would go very far in persuading people to vaccinate -- much further than the incendiary language you use or the facile calling up of superficial goofball celebrities.

Now, don't get me wrong. I am decidedly NOT against vaccinations. I just think people should stop before they call people immoral or reckless and think about how AFRAID many of us are -- AFRAID for good reason. We are afraid and not crazy. How about talking to the legions of parents who allow their young children to play a sport that could very well cause their brains to be jarred against their skulls and, over time, alter the exquisite and beautifully wrought neurons of which they're made.


I'd like to be under the sea
In an octopus' garden in the shade
He'd let us in, knows where we've been
In his octopus' garden in the shade
I'd ask my friends to come and see
An octopus's garden with me
I'd like to be under the sea
In an octopus's garden in the shade
We would be warm below the storm
In our little hideaway beneath the waves
Resting our head on the sea bed
In an octopus's garden near a cave
We would sing and dance around
Because we know we can't be found
I'd like to be under the sea
In an octopus's garden in the shade
We would shout and swim about
The coral that lies beneath the waves
(Lies beneath the ocean waves)
Oh what joy for every girl and boy
Knowing they're happy and they're safe
(happy and they're safe)
We would be so happy you and me
No one there to tell us what to do
I'd like to be under the sea
In an octopus's garden with you
In an octopus's garden with you.
In an octopus's garden with you.

Where else do you read about The Beatles, Beverly Hills, the NFL, vaccinations and marijuana and have it all tied up in a neat little package?

Tiny Particles

That was a headline in this morning's paper, and it just struck me. That's all -- it just struck me. So much that we think we know -- in fact, everything we think we know, lands up being debunked. This headline, that I glanced at on my way to the bathroom (I'm one of those people who realizes they need to pee well before they actually pee so that they find themselves really needing to pee well after they first noticed) provoked so many other thoughts:

1. the fact that Sophie is responding to marijuana after unsuccessfully ingesting twenty powerful synthetic drugs in nearly as many years (really, what the hell? Couldn't THEY have figured this out sooner?)
2.  how often THEY (because it's always THEY, right) reverse positions on what is good for you and  what is bad. For instance, I know you've heard that having a large ass helps you to live longer than a skinny one (I'm living forever, apparently), but did you hear the latest news that eating a handful of nuts a day will help you to live longer? So much for counting out those cashews on Weight Watchers.
3. how we're pressured to trust Science unequivocally
4. how we often do trust Science unequivocally
5. how we're browbeaten for expressing our doubts (think vaccination "debate")
6. how weird and inexplicable the universe really is (the typhoon in the Philippines, tiny particles upending the universe, men in general)
7. how weird and inexplicable human beings generally are (despite "evidence" to the contrary, there are still those diehards who believe Adam and Eve just appeared one day in a garden)
8. how weird and inexplicable my own brain is (that thoughts keep coming, willy nilly, prompted by no less than one headline and the urge to pee)
9. how tiny particles can upend one's universe in general (evidently the world of astronomy is rocking)
10. how Blake wrote in 1803 To see a World in a Grain of Sand/and a Heaven in a Wild Flower/Hold Infinity in the palm of your hand/and Eternity in an hour.

Reader, what's upending your universe today?

How We Do It: Part XXXVII of a Series: Fragment

I took Sophie to the osteopath this morning, and she placed her gentle hands on Sophie and worked to move and heal her. In her silent room with a view of the gray Pacific, doves cooing on the sill, the doctor spoke softly and I lay my head on Sophie's stomach and closed my eyes and breathed in calming myself, breathing out smile. We spoke of Dr. Viola Frymann, the great and now very old osteopath who saw Sophie regularly when she was a baby and whose influence on me is immeasurable. I heard the gurgling of Sophie's stomach beneath my head, felt the infinitesimal jerks of her body, let tears slide out of my eyes, the memory of Sophie as a baby, the hopes for her, the compromises and acceptance, the despair and love and acceptance again, even of death. When I drove home, the cars ahead and around me glinting in a too-hot Los Angeles morning, I thought of the angry voices of the internet from that morning, those who call other mothers irresponsible for what they do and don't do for their children, the endless and interminable vaccination argument, black and white and how clicking them off, shutting those voices, xing them out, angry and stupid, doesn't still or instill anything. Sit with me, here, I think, lay your head, here, next to mine. Listen. Lower your voice. Abide.



Of course! The path to heaven doesn't lie down in flat miles. It's in the imagination with which you perceive this world, --


The Swan

Across the wide waters
     something comes
          floating—a slim
             and delicate

ship, filled
     with white flowers—
          and it moves
             on its miraculous muscles

as though time didn't exist,
     as though bringing such gifts
          to the dry shore
             was a happiness

almost beyond bearing.
     And now it turns its dark eyes,
          it rearranges
             the clouds of its wings,

it trails
     an elaborate webbed foot,
          the color of charcoal.
             Soon it will be here.

Oh, what shall I do
     when that poppy-colored beak
          rests in my hand?
             Said Mrs. Blake of the poet:

I miss my husband's company—
     he is so often
          in paradise.
             Of course! the path to heaven

doesn't lie down in flat miles.
     It's in the imagination
          with which you perceive
             this world,

and the gestures
     with which you honor it.
          Oh, what will I do, what will I say, when those
             white wings
           touch the shore?

Mary Oliver