Saturday, March 28, 2015
Henry came with me today to volunteer for Family Day at the Epilepsy Summit. Not only was I surrounded by my peeps -- vastly superior to yesterday's clusterf*&k, but I had my incredibly handsome, sweet boy there to claim as mine. It was a fine day, filled with community and amazing stories and families connecting to one another. The Epilepsy Foundation of Greater Los Angeles and The Charlie Foundation are such wonderful organizations -- we are all so very grateful for what they do.
Friday, March 27, 2015
She's the reason I subjected myself to speaking in front of a room full of neurologists and a couple of friendly faces today -- or perhaps not the reason but rather the inspiration. The reason I spoke in front of a room full of neurologists today at the Epilepsy Summit in Manhattan Beach was to participate as a parent on a panel to discuss CBD, to share our particular story and to use my own voice and words to support all these families, all these people who are struggling with refractory seizures. Can I tell you that a roomful of neurologists is actually not something that intimidates me but rather challenges me to dig deep and not feel bias, to not have low expectations, to not sigh inwardly at the predictability of how they might respond. Equanimity is what I'm after, and it's taken nearly twenty years to touch its elusive borders. I go into these things conscious of my own bias and emotions, and I try to go in open -- wide open. And every time I do, I feel like an asshole afterward for the attempt. If I told you that those of us present who were NOT neurologists were patronized, condescended to, subtly mocked, mansplained and even bullied, what would you think? There was no discussion. I was very challenged today, and every single low expectation was met. Expletives come to mind, but like my mother always said, Don't stoop to their level. Be better.
Thursday, March 26, 2015
Sophie's room is lavender, and I actually love the color purple, and we've been living epilepsy awareness every single day, so I didn't commemorate the day until this afternoon when I saw all the purple of my comrades and friends splayed out all over Facebook. My neighbor was wearing a purple tee-shirt and reminded me as well.
So much pain, so much frustration, so much anger and tenacity and strength and courage displayed.
So much love.
Here's a refresher:
- Epilepsy is NOT rare. There are more than twice as many people with epilepsy in the US as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined. Epilepsy can occur as a single condition, or may be seen with other conditions affecting the brain, such as cerebral palsy, intellectual disability, autism, Alzheimer's, and traumatic brain injury.
- You CAN die from epilepsy. While death in epilepsy doesn't happen frequently, epilepsy is a very serious condition and individuals do die from seizures. The most common cause of death is Sudden Unexpected Death in Epilepsy. While there is a lot we still don’t know about SUDEP, experts estimate that one out of every 1000 people with epilepsy die from SUDEP each year. People can also die from prolonged seizures (status epilepticus). About 22,000 to 42,000 deaths in the US each year occur from these seizure emergencies.
- Over 30% of those who have epilepsy suffer from refractory seizures -- epilepsy that does not respond to medication. All medications cause undesirable side effects, including irreversible ones.
- Despite those statistics, epilepsy is alarmingly under-funded and understood. Despite causing as many deaths as breast cancer, for instance, the NIH reported that in 2014, the support level for epilepsy based on grants, contracts, and other funding mechanisms used across the National Institutes of Health (NIH) was $154 million. The amount for breast cancer was $682 million.
- Epilepsy can devastate families financially as well as emotionally.
- DO NOT PUT ANYTHING IN A PERSON'S MOUTH WHILE HAVING A SEIZURE. It's impossible to "swallow the tongue."
I dropped Oliver off at two very cool seminars for homeschooled kids the other day and decided to work in my car with my new laptop. I rolled the windows down, parked on a side street and began to work on the two presentations I'm doing this weekend at the Epilepsy Summit in Manhattan Beach. I also worked a bit on the ghostwriting project. I listened to birds in the almost piercing silence of the neighborhood (a great relief from the almost constant Mcnoise from McMansion construction in my neighborhood that includes really loud mariachi band music), put my face up to the sun and felt glad to be alive and grateful to be working.
While honored to have been asked to participate twice at this weekend's summit, I have to be honest and tell you that I sort of, kind of, hate these things now. I opened the program and saw, immediately, that the biggest sponsors are the big pharmaceutical companies. There will be some wonderful family seminars and programs and, undoubtedly, lots of information, but contemplating the big picture just makes me feel trapped and tired and alien. Just today I spoke with a friend in New York City who wants to try cannabis for her young daughter who suffers from a terrible brain disorder. Charlotte's Web Hemp Oil is available to be shipped in most of the states because of its classification as hemp, but there's still a lot of gray area, and we were going back and forth on whether it's better for me to pick it up for her here and then ship it to her in New York or whether she should drive over into New Jersey and pick it up there. Bullshit, right? On top of that is the question of her nursing staff at home who might not be able to give her daughter the oil because they can only administer meds prescribed by a doctor, and there aren't any doctors right now who can or even would do so. Ironically, while the Powers That Be futz around with their need for more research, I'm reading (for a project I'm doing) about the reams of studies and evidence of efficacy done, in some cases, scores if not hundreds of years ago.
Sigh. I guess my ambivalence has something to do with the fact that nothing traditional has ever really helped Sophie or my family, and while I don't want to throw the baby out with the bathwater, I'm hard put to participate in anything at this point under the auspices of big pharmaceutical companies. I admit as well to backing out of doing the hard lobbying work that some of my comrades and colleagues are doing right this very moment to pass a bill in Congress that would make cannabis oil more readily available.
We're talking years and years, people, for any of this to truly happen.
Sometimes I just want to put Sophie under my arm or throw her over my shoulder and run far away. At the very least, I'd rather sit in my car typing while listening to the birds than shout into the vacuum that is the medical world.
Wednesday, March 25, 2015
This is what you shall do: love the earth and sun and the animals, despise riches, give alms to every one that asks, stand up for the stupid and crazy, devote your income and labour to others, hate tyrants, argue not concerning God, have patience and indulgence towards the people, take off your hat to nothing known or unknown, or to any man or number of men, go freely with powerful uneducated persons, and with the young, and with the mothers of families, read these leaves in the open air every season of every year of your life, re-examine all you have been told at school, or church, or in any book, dismiss whatever insults your own soul; and your very flesh shall be a great poem, and have the richest fluency, not only in its words, but in the silent lines of its lips and face, and between the lashes of your eyes, and in every motion and joint of your body.
Walt Whitman, 1855 Preface to Leaves of Grass
Tuesday, March 24, 2015
|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...
I've vaccinated all of my children and believe everyone should vaccinate their children, but...
You're exactly the reason why everyone should be vaccinated, so we can protect your kids!**
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
Monday, March 23, 2015
I started Early - Took my Dog -
And visited the Sea -
The Mermaids in the Basement
Came out to look at me -
And Frigates - in the Upper floor
Extended Hempen Hands -
Presuming Me to be a Mouse -
Aground - upon the Sands
But no Man moved Me - till the Tide
Went past my simple Shoe -
And past my Apron - and my Belt
And past my Bodice - too -
And made as He would eat me up -
As wholly as a Dew
Upon a Dandelion's Sleeve -
And then - I started - too -
And He - He followed - close behind -
I felt His Silver Heel
Upon my Ankle - Then my Shoes
Would overflow with Pearl -
Until We met the Solid Town -
No One He seemed to know -
And bowing - with a Mighty look -
At me - The Sea withdrew
Emily Dickinson, c. 1862
***I posted this years ago, and I just love it so I'm posting it again.
I dragged myself out for a walk today and tried to stop and smell the roses. I noticed this stained heart in the sidewalk and would extend the metaphor out, but I don't have it in me. If the tips of my shoes were in the photo, I might call it Don't tread on my heart. A little further on, I noticed a stain in the exact shape of the Italian map. I'd extend that out to being a sign that I am supposed to go to Florence or perhaps Sicily.
I also noticed a long dark hair curled in the shape of a Japanese samurai warrior's head with a pigtail on the edge of the sink when I stepped out of the shower. You can take that where you'd like to take it.
Karen Lowe, the writer of the article in National Geographic told me today that the "tech team at the magazine is evidently working on bringing the article back up." We shall see, right?
What's on your agenda today?
Sunday, March 22, 2015
|Driving Meyer Lemon|
Those are some Meyer lemons that I picked off my friend Jenni's tree yesterday afternoon, after I dropped Oliver off for a birthday party. He finally got to do that airsoft gun thing and, of course, had a blast. He told me that there were some creepy people dressed all in camo running around. Grown men. He said that I would have taken one look and walked out. He knows me well. He asked whether he could go again with Henry, and I said that I wouldn't pay for it or drive them there. Ever. Would I let them go if they paid with their own money? Why, yes, I would, at this point. I figure that if I don't let them do these things, they 'll do them all the time when they get older. They might actually be that grown man in camo running around in Lawndale, California pretending to be a soldier.
Later this week, I'm participating in the Epilepsy Foundation of Greater Los Angeles conference/summit. On Friday, I'm sitting on a panel with a few other people to discuss CBD in front of a whole bunch of neurologists and physicians. The other participants include an eminent male neurologist from UCLA, an emergency room physician who is also a father of a child with epilepsy and a woman who has something to do with Realm of Caring, I think. The UCLA neuro is in charge of the show and sent over a suggestion for how the panel discussion should proceed. I am evidently first, and he listed my name like this:
- Start with strictly parent viewpoint - Elizabeth -- I'm assuming you're not involved in research or healthcare.
And so on. Reader, I had to do it. I had to respond with my characteristic thinly veiled irritation. The veil is, of course, irony and black humor. I'll give a fabulous prize to the first person who guesses why I was irritated and what I might have said. I should add that The Neurologist is a great guy, that he responded to me appropriately and with great humor and that we are all looking forward to the weekend. If you remember, the last time I spoke about CBD, I was told that it was as if a bomb had been let off in the room. Maybe this time I'll wear a leotard and light sparklers. On Saturday's Family Day, I'll be with my peeps, showing the Extreme Parenting Video Project that I made some years ago with Erika and Phil and talking a bit about the journey I've been on with Sophie since she's been diagnosed. I guess I should wear the leotard to that event as well, or maybe a burka to suggest the complete erasure of my identity over the last two decades.
What did you do today, Reader? I did some more purging -- lots and lots of it. Frankly, though, my room still looks like the same, cluttered somewhat bohemian space it looked like before. The Barbie closet is sleeker, though, and I threw out a lot of papers. I flipped through some old journals and had to talk myself out of a deep depression. Suffice it to say that there is nothing new under the sun.
I forgot to tell ya'll about Friday night's Books & Bakes. I think it might have been the best one ever. We talked and laughed about John Lanchester's really great novel The Debt to Pleasure. It'd be hard to describe it, but think travelogue, murder mystery, erudite food criticism, recipes, laugh aloud wittticisms and a creepy serial killer. Here's what I cooked:
Provencal Fish Stew
Toasted Baguette with Aioli
Roasted Tomatoes with Farro
Espresso Creme Brulee
Here's what we drank:
The next book for the salon is Anthony Marra's A Constellation of Vital Phenomena. It's happening on April 17th at 7:00 pm. Please come if you can.
Strictly Parent Viewpoint Elizabeth
Saturday, March 21, 2015
I found my Frida Kahlo Frocks and Socks magnetic set in one of the drawers whose contents I am purging this afternoon. I also found Sophie's original health insurance cards which provoked a storm of reminiscing in my head about the events of June, 1995 when she was diagnosed. I might title that chapter The HMO: Part One In The Odyssey of an Unwitting Healthcare System Traveler, A Tragedy.
Cast my memory back there, Lord. Sometimes I'm overcome.***
*** from Van Morrison's Brown-Eyed Girl, easily one of my favorite songs and a line that comes to me at least once a day, but in this case, does not refer to making love in the green grass behind the stadium.
Thursday, March 19, 2015
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.
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.
Wednesday, March 18, 2015
that despite the San Francisco airport Virgin terminal restaurant bar and a Moscow Mule with calamari dipped in lemon aioli, the butterscotch pudding, the article about the IRA in the new New Yorker, then the first pages of Rachel Cusk's new novel in an aisle seat with a glass of bubbly water and a lime wedge, when I descended the escalator at LAX, I felt tempted to claim the driver with the sign that read ELIZABETH, tell him that's me! and see what sort of life lay ahead.
Tuesday, March 17, 2015
I spent another quiet day with Aunt Yvonne. Listen, Reader. As they say, aging isn't for the faint of heart. I'm 51, and while there are days when I feel as if I've dragged three times as many decades around, there are more where I'm almost blithely unaware of how short our time on earth is -- at least the young part. In the quiet of the room where my aunt's rest is marked by the puff and wheeze of an oxygen machine, I wonder what it's all about, it the operative word. A parade of friends came to visit -- an Indian woman, a Philippino woman, a blonde in a periwinkle sweater, a beautiful Romanian young woman, a Russian Orthodox priest with Alzheimer's in a long, brown robe, a heavy gold chain with a cross dangling, an 84-year old woman who told me she was taking care of her husband with dementia and battling his children in court.
We know what it's all about.
Just outside my aunt's bedroom is an amazing succulent, its waxy eggplant-colored leaves swollen, clusters and clusters of them sprouting from one gnarled branch and in the middle, a cone of yellow flowers so bright and perfect and multitudinous that they made my eyes fill up with tears.