Saturday, February 28, 2015

Laissez-faire Parenting, Part 435: Boy Talk

As we drove around the shitty today, I listened to Oliver chattering endlessly about the cars we passed, and I nodded my head while maneuvering the sexy Mazda and turned toward him at the stoplight when it turned red. You've got something black in your teeth, I said to him, and then like a reflex, have you brushed your teeth today? (it was late afternoon, and the sky ahead was pinking up for sunset). And then he said in a very good-natured tone, not at all miffed or even with the customary annoyance -- actually quite to the contrary -- but rather proudly, I've actually brushed my teeth at least once a day for about two weeks straight! Reader, he waited a beat, a beat that I thought was for me to fill in with the usual parenting jargon about teeth-brushing and hygiene, the beat that his brother, if present would have filled with You're a disgusting pig, but before I could begin, the light turned green, I had turned my head back to the road and simultaneously realized that we were both supposed to feel good about this diligence on his part. I used to NEVER brush my teeth! he said as I smoothly drove the sexy Mazda forward, and then he turned his head out the window and commented on the baller Tesla that roared by us.

Friday, February 27, 2015

Books & Bakes February

photo by Sir Cecil Beaton, 1938

If you squint, don't I sort of, kind of, look like Gertrude? I even have a poodle! My Alice B. Toklas is Mirtha (just the cooking part), and I'm getting ready to have another group over to discuss Monique Truong's novel The Book of Salt. Because the book is about a Vietnamese chef who works for the legendary couple, our menu is both French and Vietnamese. We'll start with Pate and Gherkins and French cheese and crackers while sipping on a French rose. Dinner is a Vietnamese Noodle Salad with Shrimp, Beef or Vegetable Pho and Tofu Bahn Mi. For dessert I've shined up my rusty French pastry skills (another life) and made a Vacherin with Berries and some Ginger Black Peppercorn French Ice Cream. I won't divulge what happened to my first meringue.  Did it burn in our ancient oven that predates Gertrude herself? I'll never tell. I told you that I'm rusty, a far cry from this gal who cooked in a four-star New York City restaurant back in the day under one of those maniacal pastry chefs you read about and an equally maniacal French-Swiss-Hong Kong chef who yelled so much, his white face turned pink and his tall chef's hat nearly blew off with the steam from it. Never at me, though. Never.

The ice-cream base nearly boiled over, too, but I saved it in the nick of time, and it's now sitting in an ice bath, slices of ginger and tiny multi-colored peppercorns steeping away. Oh, la, la.

Wish you were here.

Thursday, February 26, 2015

Intimidating Words, Part Two

Skeletal and labyrinthine

Did you mean pharmaco-?

More suggestions:

There are no results for: epileptogenesis, but we are adding new words daily.

I received an email from MedScape this morning with Targeting Pharmacoresistant Epilepsy and Epileptogenesis in the subject line. This was the exact title of the article referenced, and I shrank when I saw it. My mind wanders to wondering. The names for drugs and the words cobbled together by the Science Powers That Be make me squirm. I can't find their definitions in the dictionary. There are, apparently, not even suggestions for these words or even substitutes. I do like the word confusticate, as referenced above. It means to confuse or perplex; bewilder. 

Epileptogenesis is the gradual process by which a normal brain develops epilepsy. Pharmacoresistant epilepsy can be practically defined as failure to achieve seizure freedom following adequate trials of two tolerated and appropriately chosen AEDs.

The weight of metaphor. 

Oh, to be a person who embraces literalism.


[lit-er-uh-liz-uh m] 
adherence to the exact letter or the literal sense, as in translation orinterpretation:
to interpret the law with uncompromising literalism.
a peculiarity of expression resulting from this:
The work is studded with these obtuse literalisms.
exact representation or portrayal, without idealization, as in art orliterature:
a literalism more appropriate to journalism than to the novel.

I love the word skeletal. I love the word labyrinthine. Our Chinese flame tree has finally dropped all but a few clumps of brown leaves, and its branches reach up to the blue sky and cast skeletal shadows on the grass, the patterns labyrinthine.

I hate the word pharmacoresistant. I hate the word epileptogenesis. Sophie's seizures resist a vast pharmacy of chemicals, and the gradual process by which she acquired epilepsy - - the epileptogenesis and resultant pharmacoresistance  -- have stripped me to the bone, rendered me skeletal, clanking and clinking the labyrinthine paths.

Intimidating Words, Part 1

Wednesday, February 25, 2015

Cannabis Questions Answered

Is Sophie still taking the same amount of Charlotte's Web, and how much does she take? Is it working? Is it a miracle? Do you think marijuana should be legalized? 

I think I mentioned a while back that I don't like calling any treatment that's been around for thousands of years and whose efficacy was basically hidden from the public because of politics a miracle.  A miracle is defined as a surprising and welcome event that is not explicable by natural or scientific laws and is therefore considered to be the work of a divine agency. I guess you could say that a miracle is also a wonder or a marvel, but when people start ascribing it to the supernatural or say that God gave us the plant -- well -- forgive my squirminess. I'm not a believer in that way. I just don't buy that God made the plant available to Sophie and not to someone like her in -- let's say -- Georgia, because She wanted a bunch of politicians to be arguing over who gets it and who doesn't and then somehow see the light and further glorify Her name by agreeing it might be helpful to some kids but only some kids and not all kids and certainly not with any of that funny stuff in it. Yesterday, I heard the mother of the American Sniper wailing on the radio and praising God for meting out justice to the sick soul of the soldier that shot her son to death by giving him a sentence of life without parole. At risk of sounding heretical or even offending someone, I wondered from the safety of my sexy Mazda where I was listening to this woman praise her God, if God had approved of her son killing those 166 people over in that evidently godforsaken country and then thought better of it and placed her son in the path of the other soldier who righted that wrong and then determined that he'd need to go to jail for a while and think about that and --- where was I?

The miracle. The answer to the question.

Sophie is now taking less Charlotte's Web Hemp Oil (CWHO) than she was last year, a tiny amount, really, and is on close to 50% less benzo than she had been when we began weaning in June of last year. The ratio of cannabis to THC in CWHO is approximately 26:1, and we have found that the coconut oil base is easier on her stomach. It appears that for many people taking cannabis, a smaller amount is better. So unAmerican, right? We have not added any THCa, or THC, something that many of the kids with epilepsy are taking to help seizure control (and something that God has determined should not be available in many states because of its psychoactive properties), but at least for the moment have tweaked the dosage to about the right point and are happy with the results. We believe the lower amount of benzo is allowing the cannabis to do its work and hope that as we continue to wean the drug --- slowly, slowly, slowly -- she'll continue to do better and better. This is touchy stuff, folks, and it's difficult to figure out. I know of many people whose kids are doing very well with cannabis, and I know some people whose kids are not doing so well or who have even seen a worsening of their symptoms. I think the combination of multiple anti-epileptic drugs and the exquisitely unique brain chemistry of each person make determining whether cannabis will or can help to control seizures very complex, but I believe fervently that every person should have the opportunity to try it and tinker with it. I also believe in legalizing marijuana in all forms and rescheduling it. Pronto.

Sophie is good. She's really good!

She's good right now, and that's a marvel and a wonder for which I'm very, very grateful. The universe is abundant.

Tuesday, February 24, 2015

Homeschool PE at the Beach and Just Enough Snow

Oliver and I went for a very long walk today in Santa Monica. It was a blustery day and incredibly beautiful. He actually skateboarded while I walked briskly, and I called it Home-school Physical Education. My sister, who lives in St. Louis, texted me the question how is the homeschool thing going? The meaty stuff?

I told her great. I told her that we would be doing another unit of history when we got home and then some English Language Arts. The more I do this, though, the more I realize that it might be the best way to educate, even to live. I wake up every morning in some bit of existential distress. What's it all about? I think. How do we keep on keeping on? There's so much suffering. I'm getting old. What if Sophie lives forever? What if I do? What if I don't? What if the world melts? What if the Republicans win in 2016? How will I afford college for Henry? Who's going to take care of this world? How do we go on? Why are we so lame? You know the drill. After working with Oliver, though, and learning myself, going on these outings, opening my eyes to the very real goodness that is my life, the existential angst recedes. I move outward, see blue.

On the way home, we faced the mountains, covered in snow. I decided that was all the snow I needed to see at just the right distance.


Betweenpie mountains

He dressed for Hopkins that morning and sat alone at the Greek cafe in Beverly Hills, reading of Jackself and thwarted passion, the ice in his glass melting. He waited for pie.

My own heart let me more have pity on; let
Me live to my sad self hereafter kind,
Charitable; not live this tormented mind
With this tormented mind tormenting yet.
I cast for comfort I can no more get
By groping round my comfortless, than blind
Eyes in their dark can day or thirst can find
Thirst's all-in-all in all a world of wet.

Soul, self; come, poor Jackself, I do advise
You, jaded, let be; call off thoughts awhile
Elsewhere; leave comfort root-room; let joy size
At God knows when to God knows what; whose smile
's not wrung, see you; unforeseen times rather — as skies
Betweenpie mountains — lights a lovely mile.

Gerard Manley Hopkins

Monday, February 23, 2015

On Oscar and Lady Mary

It dawned blue sky and puffy clouds after last night's downpours, and even now the clouds are skittering across the sky, the air washed clean and cool. I watched the Oscar ceremonies last night and was grateful that my favorite movie of 2014, Ida, won for best foreign picture. The Polish director was utterly charming and went on too long, but I loved him anyway. I was glad, too, that Patricia Arquette won an award for her performance in Boyhood, and her acceptance speech was one of the few that didn't make me squirm in either boredom or embarrassment at the pretension of it all. I'm not a big fan of the host, and all that song and dance makes me even more squirmy than the sanctimonious stump speeches. The worst and most distasteful joke of the night had something to do with the horrible movie American Sniper, and if I sound all righteous and pretentious, it's because I just can't wrap my brain around anyone joking about a ridiculous war, started on lies, that's destabilized an entire region of the world, unleashed some of the worst terror man has ever known, ruined hundreds of thousands of young men and women's brains and killed even more people across the globe. That a bazillion dollars was paid to a hunk of an actor to portray a guy whose modus operandi is to kill as many people in as efficient a way as possible and then be glorified as a hero -- well -- I can't bear it. And before I end this rant, let me say that I really didn't like the movie Birdman, despite the wonderful acting of Michael Keaton and Emma Stone, that I found it pretentious and slick and soul-less, so when it was announced by one of my least favorite Hit You Over the Head With My Acting actors -- well -- I was off to looking for redemption for poor Lady Edith and some sort of lightning to hit Lady Maaaaahhhhry at Downton Abbey. Whether rich and tittering at the plight of those at the other end of an American Sniper's sights, or at one's unmarried, sour spinster sister, I'm sick of them all.

Reader, how are you?

Sunday, February 22, 2015

Complacencies of the Peignoir*

It's a bit gloomy today, both outside and in. A lot of us are feeling depressed or anxious or just plain Sunday-ness. I don't think there's anything to do about it other than let it be, let it roll on in and inevitably, out.

This silly city is primping for the awards ceremony tonight, and I don't think I can stomach it. I have a dear friend coming over, though, and perhaps if I print out those ballot forms and give them to the kids, I'll have girded my loins and will present a more good-humored face.

We live in an old chaos of the sun,
Or old dependency of day and night,
Or island solitude, unsponsored, free,
Of that wide water, inescapable.

Wallace Stevens, from Sunday Morning

*also a line from a favorite poem by Wallace Stevens. You can read it here.

Saturday, February 21, 2015

Saturday Really Good Lines From Books I'm Reading

What George told Mrs. Rock then was that her mother was under surveillance and had been being monitored by spies.

Mrs. Rock: "You believe your mother was being monitored by spies?"

That was what counselors were trained to do, to say back to you what it was you said, but in the form of a question so you could ask yourself why you'd thought or said it. It was soul-destroying.***

from Ali Smith's How To Be Both: A Novel

***The last two lines were what I thought really good -- I added the preceding ones because it needed context.

Friday, February 20, 2015

Homeschooling in the Winter in Los Angeles

One of Oliver's instructors

I know that it's cold elsewhere, and the effects of global warming on our territory is an alarming lack of rain, but this morning Oliver paddled out into the ocean again for another stand-up paddleboard STEM class and I can't help but feel grateful, again, to live here. That fellow above was one of his instructors. The other is a woman who looks equally as fine, but I don't think you need a photo of her. Right? So much for those of you who say that you'd miss the seasons if you lived here in February.

We drove home from Redondo Beach in the early afternoon and delved into Egyptian history with a curriculum that uses the Usborne Internet-linked Encyclopedia of the Ancient World. We read about Hatsepshut, the queen who became king. Do ya'll remember learning about her when you studied Egyptology? I sure didn't, and it's quite a fascinating story. After being wedded to her brother for a bit (a common occurrence in ancient Egypt) and producing no heir (probably a blessing), her young nephew was next in line to be king but too young to rule, so she became a regent.

Eventually, she decided that she would be not regent or even queen, but King, was properly crowned and began to wear all the royal regalia that a male king would wear, including a little beard. Oliver wondered if maybe she was transgender, an interesting thought that I could only marvel over in its casualness. These open-minded millennials!  I told him that I didn't know but that he could perhaps one day write a doctoral dissertation on it.

Hatsepshut ruled for many, many years, but after she died, the pissed-off nephew became king and ordered all of her images and buildings -- everything associated with her --  be defaced and destroyed. Sigh. Some things never change. Evidently, Egyptologists are working on restoring some of the buildings that she ordered built, including a mortuary temple. Here's a picture of Hatshepsut, with her little beard:

So, it's been a productive and educational day. Onward.

Thursday, February 19, 2015

Laugh Like the Buddha

We just got a new bottle of Charlotte's Web Hemp Oil, and we're back to using the cannabis in a coconut oil base. That seems to be easier on Sophie's stomach than the olive oil one, and it sure tastes better. The coconut oil solidifies easily, though, so we warm it up slightly in a cup of warm water before drawing it up in a syringe. The whole thing, the whole catastrophe, as Zorba says. Hence, Frida. I think it's appropriate, given Frida's revolutionary politics and sense of humor. I've been looking through her diary and read a bit in the introduction that resonated with me, particularly as I continue to read through the more than 110 comments on the National Geographic article that appeared last week. Some of the comments are interesting and intelligent, a few are even compassionate, and a very few demonstrate an understanding of the article and by extension my story, but most of them have veered off into the Land of the Absurd where Absolutists and People Who Take Themselves Entirely Too Seriously start shooting one another while SCIENCE and MAGICAL THINKING dart in and out, dodging the bullets. By about comment 50 or so, I left off feeling despair and started doing Zorba's dance. Go watch it if you need a refresher.

Teach me to dance, will you?

I was cheered reading that Frida's Diary was the best example of this ribald, punning, dynamic genius for humorous language that makes Kahlo such an endearing and, finally, happy figure, in spite of all suffering.

"Her voice, all who knew her tell us, was deep, rebellious, punctuated by caracajadas -- belly laughs -- and by leperadas -- four letter words."

Anyhoo. That's why I stuck Sophie's Charlotte's Web (that concoction of Supposedly Not Studied Enough But Been Around For Thousands of Years and Used for Medicinal Purposes in 600 B.C.E. Cannabis and Coconut Oil in the Frida Kahlo mug.

Sophie is doing well. Her teacher told me today that "Sophie's back." They've been able to do some productive work at school, and her overall mood is better.

Cross your fingers and toes.
Knock on wood three times.
Do your Zorba dance.
Laugh like the Buddha.
You know the drill.

Happy Chinese New Year!

Long-time readers might remember when Oliver and I went to the Chinese New Year celebration in downtown Los Angeles last year. The boy literally dragged me out of bed to do it again this year, and I am just so glad that we did. First of all, we realized that the really giant celebration at the main temple, the one that brings thousands of people and news crews and VIPs and limos, is NOT the one that we like. I don't know if I've ever mentioned that Oliver, despite being severely dyslexic, has an almost uncanny sense of direction. The kid can remember how to get ANYWHERE, and I mean anywhere. He can't even read signs that well, but he can find his way to anyplace that he's visited before, in any city at any time of day or night. I, on the other hand, am utterly directionally challenged and get lost literally everywhere, at any time of day or night. I used the GPS to go downtown at 11:00 last night, but when we found ourselves at the huge temple, we realized that it was the wrong one (different from last year), and Oliver promptly led us to the right one, a sort of outlier on an otherwise empty road. We got there just in time to mingle with mostly Chinese people, light incense and offer our prayers to the various Buddhas, eat the delicious chicken and rice soup and then be deafened by the lighting of what seems to be millions of firecrackers.

Hello only other non-Asian at the temple!

Here are fruit offerings along with incense sticks.

 This man laughed gleefully with me when I held up my incense sticks like small torches, not realizing that I'd lit the wrong end! I would have been so embarrassed had the guy not been so utterly kind and gracious. He grabbed them from me, laughing all the time, and gave me fresh ones with instructions on how to do it.

Oliver and I both loved the gentle and reverent atmosphere at the temple. It was a peculiar combination of exuberant joy and great peace. We each prayed silently along with hundreds of other people.

The lighting of the firecrackers is outrageous! It's so loud and so fast and seems so utterly non-politically correct to have that much fire and smoke and noise so close to so many people -- but it's awesome. I took videos but won't download them here -- below is a shot of all the spent crackers:

I told Oliver as we walked back to our car, shortly after midnight, that it was strange and wonderful how peaceful the celebration is, despite the deafening roar of those firecrackers being lit and the drums pounding. I am grateful to have shared this experience with Oliver for two years in a row.

Wednesday, February 18, 2015

Mimi and Dona -- a film by Sophie Sartain

I tend not to think too much about the future as an elderly caregiver to Sophie. I tend to push away the thought that she'll be home full-time when school is finished in two years. You could say that I'm optimistic that everything will work out, or you could say that I've achieved some sort of buddha-like satori where I literally live in the present. Or you could say that it's so freaking scary. Or you could say that I'm f^*ked.

An old college friend of mine, Sophie Sartain, has made a beautiful documentary called Mimi and Dona. Sophie said this: MIMI AND DONA is a personal documentary about my aunt and grandmother. It is also a love story. I set out to make it in 2009, taking an HDV camera from Los Angeles to Dallas to capture the quirky and insular world of Mimi and Dona. Time was scarce. Mimi had finally admitted that she could no longer care for her daughter Dona, and my mother (Dona's sister) had submitted an application to move Dona to a state-run institution in Denton. After 64 years, Mimi would have an empty nest, and Dona would suddenly be on her own.

You can read more about it on her website, and hopefully you'll see it at screenings in Texas and New York.

An estimated 4.6 million people in America have an intellectual or developmental disability. 

75% of these individuals, our fellow citizens, live at home.

This is what I posted on Facebook:

THIS is the reality of what long-term care-giving is like in these United States. As we argue and dither over everything from vaccinations and women's reproductive freedom and the Affordable Care Act, tens of thousands of our fellow citizens are being cared for by their aged parents with little to no help and only dismal alternatives. THIS will be the fate of my family, too, unless we wake up and extend some compassion and sensible supports to families. Thank you, my old college friend, Sophie Sartain, for making this incredible documentary that will, I hope make a big splash. Watch the trailer.

Mimi and Dona - Teaser Trailer from Katahdin Productions on Vimeo.

Post Lament and Citrus Zest

Really. I just couldn't resist. For the record, I've uninstalled (is that the word?) Facebook from my phone and have pledged to only visit there once or twice a day. I've also sworn off the news, so unless Bob Dylan or someone like him dies, I don't want to hear about it. I went on a long walk with a friend this morning for the first time in -- well, let's just say that it's been too long, and as my friend says, I've got a situation going that's not getting any better. On the way to her house, I walked past a single heart monitor thingy lying in the grass and took it as a sort of omen that I need to get on the stick and exercise more regularly before the situation gets out of hand. Yesterday's lament and its residual anxiety hangover disappeared somewhere along the route we took and truly went up in a puff of salt, crushed pepperoncini and citrus zest that covered the thin slices of avocado that lay on the toasted baguette that I ate at a restaurant along our walking route. Back at my house and outside my bedroom, despite the constant whine of big box mega-mansion construction and a steady stream of male Spanish talk and music, the lemon and orange trees are blooming and literally assailing me with their sweetness. I wish I could box it up and send it to someone in Maine (Christy?) or Boston (Single Dad? Claire?) or New York (Sandra?).

Reader, what's happening with you?

Tuesday, February 17, 2015


February, month of despair,
with a skewered heart in the center.

Those are two lines buried in the middle of Margaret Atwood's poem February, and they aptly summed up my mood today. I'm not going to elaborate why and how and how long, and the skies here really are that blue and it's seventy degrees and no, there's no snow or ice, but it's still February and I hate winter, the dead of it. It didn't help, either, that I sat through part of a dreadful movie today called Kingsman, so slick and violent and soul-less that I got up and walked out, much as I did about this time (or earlier?) twenty years ago when I saw Pulp Fiction, another dreadful, slick and soul-less concoction of the glitterati. I'm going to chalk it up to February then, and winter, even when the skies are that blue and the palms that elegant and the air that gentle. 

Monday, February 16, 2015

Thoughts on Citizen Science and Public Good

This afternoon, just a few moments ago, as I cleaned up my twenty-year old daughter after a diaper change and prepared to draw up a syringe of cannabis for her afternoon dose, I was struck by the irony of listening to a certain Citizen Scientist over on the National Geographic comment page demand accountability and responsibility from the public, namely me, Irresponsible Citizen Numb-skull. I wondered, not bitterly, mind you, because we all have our issues, whether she might extend her civic duty (enthusiastically getting those 49 vaccinations and protecting the herd through strict legislation) to helping me out over here. I'm thinking she could take a stint at changing those poopy diapers every day for at least a decade, and during constipated times, she could do some telephone work (waiting begets waiting) and cajolery. I could certainly use help with insurance co-payments as well, and whoa -- let's not even get into all the things she could do when Sophie ages out of the school system. Stronger minds than my own flail at that prospect, so I imagine a really altruistic and responsible person like herself could come up with some solutions!  I'd even give her a turn at darts when we visit The Neurologist and try to decide what medication might work best should I be unable to keep getting the Unresearched-Enough Cannabis.

Even numb-skulls have dreams.


Good morning. I know you're all out there celebrating the birth of our Presidents, but I just wanted to tell you that I changed the formatting of my comment section to Embedding which means that I can reply to each of your comments, particularly when you have a question. This might mean that it's more difficult to comment, so please let me know if you're having trouble. I might have to switch back to the old way.

Oh, and please let me off the hook if I don't reply right away or at all. It'll never be personal (except if you're a troll or someone rude and Anonymous, as opposed to someone thoughtful and Anonymous) and only because I'm lame at it. I do think the comment thing should be a conversation, though, and that I should hold up my side of it. Wish me luck.

Don't you just love that Victorian photo above that I found on the internets? I sure do miss typewriters. I believe that blogging is a sort of conversation, and I look on it that way each day when I sit down to write. It's not a far stretch to imagine myself a Victorian woman of some privilege doing her correspondence each day. Thank you for your community and extra thanks for those of you who leave such thoughtful and interesting remarks. Honestly, I am just so darn grateful for all of you -- readers and commenters alike --

Sunday, February 15, 2015

Vasquez Rocks on Aqua Dulce Road with Sophie

I took Sophie to Vasquez Rocks, off Highway 14 today. The park was on the sweet-sounding Agua Dulce Road, in the Sierra Pelona Mountains, about forty-five minutes from my house. I've lived in southern California for more than seventeen years, but I'd never been to this strange and majestic place. Not only a prehistoric site for the Shoshone and Tataviam peoples, I learned that the rock formations were used by California's most notorious bandit, Tiburcio Vasquez, to elude authorities.

I feel a little like eluding everything and everybody these days, particularly certain smug and citizen scientists on the internets. I imagine that if Sophie could talk or do anything more than hobble around with me, she'd be up for eluding people as well.

Given her inability to navigate, Sophie and I didn't see much of the trails that surround the rocks but we did have spectacular views. I let go of her for one moment to take the above photo, but visions of her stumbling and smashing her head made it only a moment. At the same time I realized with gratitude that at any other time in her life, I would have worried that she'd have a seizure and that I'd have to carry her back to the car or lay her down in the dirt until she was able to walk again. Trying cannabis last year despite the medical world's admonitions against it was a bit like eluding the authorities.

We sat under the shade of an over-hanging rock at one point and watched families scrambling up the sheer faces of the rocks ahead.

Hawks circled in the sky. An older Asian man sat down next to us, and the three of us sat, completely silent, in awe.

I carried on a conversation nearly all morning, in my head, with the citizen scientist on the internets who is so adamant about my "ignorance." A friend had emailed me that he'd looked her up on Facebook, described her to me, even down to the clothes her children wore. It's a strange, strange and big, big world.  I'm grateful that this woman's language, with all its intimations of fear and control, was finally silenced in my head by what I saw at Vasquez Rocks.

As Sophie and I wandered around where we could, I realized that I have no desire to climb to high places, to scramble up rocks and perch on edges, even if Sophie were able to join me. This afternoon, I had to look down and ahead, guide Sophie through some rocky spots. She looked down some of the time but rarely up. I wonder if she's oblivious and then I wonder if she's just soaking it all in. The breeze running through the scrub made branches sway gently, and that's what caught her eye. I pulled her onto my lap on another rock and rested my chin on her shoulder. I tried to imagine what she saw, what she thought, her language, her mind's eye.

It occurred to me that the constraint of walking and being with Sophie gave me the opportunity to not aspire to something else and that the thrill was in the eye, her eye, my eye -- not so much beheld but beholden.

It will never be finished

Francesca Woodman

The Art of Disappearing

When they say, Don't I know you?
say no.

When they invite you to the party
remember what parties are like
before answering

Someone telling you in a loud voice
they once wrote a poem
Greasy sausage balls on a paper plate.
Then reply.

If they say We should get together
say Why?

It's not that you don't love them anymore.
You're trying to remember something
too important to forget.

Trees. The monastery bell at twilight.
Tell them you have a new project.
It will never be finished.

When someone recognizes you in a grocery store
nod briefly and become a cabbage.
When someone you haven't seen in ten years
appears at the door,
don't start singing him all your new songs.
You will never catch up.

Walk around feeling like a leaf.
Know you could tumble any second.
Then decide what to do with your time.

Naomi Shihab Nye

Saturday, February 14, 2015

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.

Thursday, February 12, 2015

Sophie Loo Hoo at School

I got this photo yesterday of Sophie working on a new spelling program, and it really just makes me burst with gratitude for her aide, for her teacher and for our good fortune that she has a life outside of this one, the one I often write about.

I also neglected to tell you that I think we have an answer to Sophie refusing, periodically, to bear weight on her right leg. It sounds very much like she has what's called Todd's Paralysis:

What is Todd's Paralysis?

Todd's paralysis is a neurological condition experienced by individuals with epilepsy, in which a seizure is followed by a brief period of temporary paralysis. The paralysis may be partial or complete but usually occurs on just one side of the body. The paralysis can last from half an hour to 36 hours, with an average of 15 hours, at which point it resolves completely. Todd's paralysis may also affect speech and vision. Scientists don't know what causes Todd's paralysis. Current theories propose biological processes in the brain that involve a slow down in either the energy output of neurons or in the motor centers of the brain. It is important to distinguish Todd's paralysis from a stroke, which it can resemble, because a stroke requires completely different treatment.
So, there's some gratitude and a hats-off to the Powers That Be. I'm not completely batshit crazy.

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.


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:

  • 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.


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