Scenes from the weekend

There was another lemonade stand put on by The Entrepreneur. One third of the profits will go to the Epilepsy Foundation of Greater Los Angeles. Remind me to remind you of our upcoming EndEpilepsy walk. I have a page up on a website, if you'd like to contribute -- more later --

There was another minimal seizure day with some napping (holy crapola, shitola, maloney, baloney!):

There was Resistance-to-Making-One's-Bed:

There was sluggish watching of Seinfeld re-runs and far too many video games (pay no mind to the large extension cord snaking through the house):

Reader, tell me about your own weekend. Oh, and read this.

CBD Update

I was texting with a friend this beautiful late afternoon evening, and I told her that Sophie has now been on the high CBD tincture for one week. With the exception of that no good, horrible, hideous day that I wrote about on Wednesday, she is good. Really good. I told my friend that she is not just awake, but AWAKE. She's smiling and making interesting sounds -- a cross between a screech and a moan but it doesn't sound like she's in pain or uncomfortable or anything. She's had a couple of seizures, here and there, but not much to speak of, and in lieu of stripping off my clothes and running naked through the streets in exultation (why is it that stripping naked is both an expression for ecstasy and insanity?), I'll tell you that this whole thing is very hopeful. Yes, very, very hopeful. The tincture that we're using is 13:1 CBD/THC, which is considerably below the advised proportion of at least 16:1 and more than considerably below Charlotte's Web at 25:1. We've got room to wiggle.

Administrator of My Domain

When I tried to log onto my computer yesterday afternoon, no matter how many times I tried, shutting down the thing, booting it back up, fiddling with settings, it wouldn't accept my administrator password. I have a PC, and since I can't jinx myself further, I'll confess that other than the periodic slowing that is easily remedied, I have never had a problem. I've heard people talk about those genius bars at Apple where ten year old wunderkinds play with your computer and restore it to its former appley glory, but I've never lost a single document or had a keyboard lock up or seen a black screen or watched a tiny pinprick of light disappear from the center of my humble Hewlett Packard Compaq Presario --until yesterday afternoon. I shut the thing down and went about my day, only returning and making another attempt at 10:00 last night. When the panic started rising (even though I have daily online back-ups and wouldn't, technically, lose anything), I called one of my computer maestro friends who walked me through a brief process that didn't do the trick so I resorted to calling my computer manufacturer and spoke for nearly an hour to a kind woman in the Philippines who walked me through another process that at one point had me tapping the F11 key on my keyboard while simultaneously turning on the computer. As soon as you turn on the computer, she said, begin tapping rapidly and constantly on the F11 key. As my modem is under my desk, I had first to crawl under it to turn it on and then maneuver my arm up and on top of the keyboard to reach the F11 key, all while listening to her patient, accented voice repeat Are you tapping rapidly and constantly? Are you tapping rapidly and constantly? I thought, briefly, that I was somehow being messed with, that surely tapping a key rapidly and constantly while talking to a person in the Philippines was not going to bring up my computer and allow me to log on as Administrator of My Domain. In retrospect, it reminds me of how when a dentist tells you something or that you need some procedure, you just nod your head and dumbly acquiesce. You'll need some work done right here, he'll say, tapping painfully on the edge of your tooth, I don't like the looks of that. Before you know it, you're lying back in the chair with a bib on and obediently opening your mouth to some stranger's ministrations. Soon after tapping rapidly and constantly the F11 key, though, my computer screen appeared, I typed my Administrator password into the flower icon box and then Sophie appeared, her mermaid dress, the ocean, the distant horizon and all the other parts of my Domain. I found myself sharing pleasantries with the woman from the Philippines who had so gently guided me, and unlike the dentist who performs an equally if not more important service, I felt compelled to express my gratitude by purchasing a year-long warranty package, in case it happened again.

Coyote, Griffith Park, Los Angeles

Make your mind like the earth which receives all things steadily.

Buddha

Happy Halloween, circa 2013

Happy Halloween, circa 1972

A Tale of Tails, Chained

On about hour five of seizures, neurologists, and waiting rooms, I felt a tail, trailing behind me, when I lifted, or heaved, Sophie up onto an adult examining table this afternoon to change her diaper. She had already had so many seizures. I was stifling bereft. This has got to stop, I might have thought or said aloud. I can't do this anymore. I felt the tail, its scales the years, too many years. I drag it.  Later, still more seizures and back in the car, I heard on the radio that traffic was backed up on the 101 North because of some obstruction in the middle of the highway. I'm not sure what the problem is, Kayjon Cermak of KCRW said, her voice attractive, lilting into laughter. Oh, Kayjon, you save us with your tales of road rage and obstruction, mattresses and ladders fallen off of trucks, fistfights on the side of the road, looky-loos. Oh, yes, here it is. There appears to be a large chain in the street, Kayjon elaborated, Watch out for that around Normandie. My car crept onward, north, while Sophie seized. My lips were tight closed, a trail, a tail behind me of years of doing this. I started at the sound of a police whistle and focused on an officer on a motorcycle, weaving in front of me, back and forth between cars, getting us to slow down from 10 miles an hour to 5 and then 0 and then we were stopped, in a line. The motorcycle was directly in front of my car. He climbed down off it, brown pants, the knee-high black shiny boots, the mirrored sunglasses, the bow-legs. He held his hand out, palm facing us. Stop. I think asshole, I see you and we're already stopped in the middle of the 101, where the hell else would we go? I imagine the perhaps tens of thousands of cars behind me, a tail, a trail of metal and stifled bereft. I am not making this up. The policeman turned around and stepped toward the middle of the highway, reached down and pulled up a long coiled chain in his black gloved policeman hands. He heaved it up and hauled it over and just before he reached the side of the road, he threw it, the chain, this metal tail, over the guardrail and into the brown highway brush. He was made for that moment, I decided, and was dressed for the part. When he was done, he turned to us, the front cars, gave us the signal to proceed and climbed onto his machine and took off. The beast moved forward. No gangs to bang or bust or pillaged villages to rescue, no girls in distress or crimes of passion. He could drag a chain, a tail, from the middle of the road and let it go. Let it go. Let it go. Let it go.

Head Down

Never a fair-weather fan

Even though I woke up this morning to the sound of Sophie having a really big seizure, I am encouraged by the last few days. She has had markedly fewer seizures and looks brighter. I guess the brighter part is subjective, and I could possibly be wishing it so, but I've been doing this thing for nearly two decades, so I'm going to go with definitely brighter. Isn't there a whole school of people who choose to be happy? She's brighter. She's having less seizures. There. I typed that in regular font. I feel slightly less frenzied but thoroughly weird. Anxious. I learned at the conference last weekend that about 15% of those who try CBD fail, particularly those who are on other medications or high doses of medications. These kids do better as the medicines are weaned, particularly the benzos (Onfi is a benzo). If any of you have ever weaned a benzo from an epileptic child (or yourself, actually), it's horrific. I've literally weaned Sophie from various benzos over periods of months and even years. I'm reminded that there's still Charlotte's Web to try, if this particular tincture doesn't do the trick. However,  I'm also feeling afraid. The reason for that is all the rumbling on the pediatric cannabis Facebook page about Big Government and Big Pharm -- how they could possibly get their hands on the stuff and make this whole thing a big, giant clusterfuck. I admonish myself not to be a conspiracy theorist, and then I think about our experience with anti-epileptic drugs -- getting them, paying for them -- the whole Onfi clusterfuck (twice, now, I've used that perfect word!!!) that I wrote about ad nauseum on this here blog.

One day at a time. Choose to be happy. Wean slowly, far more slowly than the Powers That Be tell you.

Anywho.

My head is down, figuratively and literally. I blew-dry (or is it blow-dried) my hair this morning, a rare, if not singular, occurrence. I did it like I used to do when I was young. I hang my head upside down and just let that hot air go. This is all part of my transition into cronedom, believe it or not. I'm going to be the crone with great hair. Also, Oliver is taking a mental health day from school which means my mental health is somewhat in question. Henry, god bless him,  is at school, excited that tomorrow is Halloween. He is planning on wearing a banana costume to school, a costume that cost $12.99 on Amazon. Thank god for easy kids with uncreative mothers. Oh, and Sophie is home because we have an appointment to see The Adult Neurologist. Now that she's eighteen, we must make that transition to Adult Neurology.

Yiddy hoo.

Writing and Gifts from Old Friends and Sisters

I started meeting once a week for a few hours with a group of writers. It's not a workshop group but, rather, a real writing group. We really write. At the beginning, we sit down and chit chat for a few minutes, catch each other up, briefly, on what's happening. Then one person tears up a few strips of paper and we each grab one or two. We write down phrases or words, anything that comes to mind and can be used as a prompt. Then someone picks up a piece of paper, opens it and reads it aloud. Then we write -- the first prompt is for five minutes, the second is for ten minutes, then it's fifteen and then back to five minutes. When the buzzer goes off, we stop typing or writing and read aloud what we've written. We don't comment, except to sigh or smile or laugh or draw our breaths in. Then we're on to the next. We follow in a specific order -- whoever opens the prompt and reads it aloud is the first to read aloud what she's written. Then we go counter-clockwise. It works. This is so good, you writers out there -- so good and so inspiring in the way that writers need to be inspired. You just start with something, anything, and then you write. I've always thought there's way too much discussion about writing in general -- about how difficult it is, about whether or not you're good enough, about the anxieties and insecurities of The Writer. Lately, I've noticed a whole lot of hullabaloo about writing for free on the internet, how resentful "writers" are when they're asked to write online and not get reimbursed. My opinion is that there haven't been too many writers in history that got paid enough money to support themselves and that if you're a writer, you'll just write, whenever and however you can. If you're getting paid and can support yourself, I envy you. If not, get a job, but don't stop writing.

Here are the prompts from a week or so ago:

1. My skeleton
2. Blood-shot eyes
3. A Sense of place
4. The Rain They Say is Coming

This week, I got a spark of a short story from the prompt It Goes Like This. Think a man, tattoos, a bald head, the goods, the threat of a cult, Jesus freaks and the slippery slope of desire -- that's what I wrote about for five minutes.

When I got home this afternoon from the usual driving around the city, I had a pile of mail, including two mysterious packages. One was for Sophie, and when I opened it up I saw that it was from one of my oldest and dearest friends with whom I backpacked through Europe in the Let's Go Europe! days. Do you remember those? This beautiful, brilliant woman sent that mermaid to Sophie, and I'm taking it as a token of luck. Sophie did really well today, too, but who's noticing? The other gift was from my funny sister Melissa. She sent me a Ryan Gosling coloring book. She knows me all too well. Henry and Oliver took one look at the gifts and rolled their eyes. Are you really going to color that? Henry asked. I told him that I imagine it will be enormously relaxing to sit and color in Ryan Gosling's lines. You'd think I was stoned, but I'm not. I'm CBD'd excited.

Maintenance in a perfect world

This morning, I splashed my face with warm water and then applied some truth serum collagen booster, followed by A Perfect World moisturizer and then a quick swipe of Telescopic SHOCKING EXTENSIONS mascara.

Sophie is on her second day of high CBD medical marijuana and I'm here to report so far, so good. I've noticed some subtle and not so subtle changes -- not as many seizures and certainly no biiiiiiiiig ones, but it's too early to tell. We'll be increasing the dose tomorrow to see what happens next. In the meantime, I'm off to tell the truth in a perfect world of shocking extensions.

Quiet Soul

March, 2001

The Soul Selects Her Own Society

The Soul selects her own Society --
Then -- shuts the Door --
To her divine Majority --
Present no more --

Unmoved -- she notes the Chariots -- pausing --
At her low Gate --
Unmoved -- an Emperor be kneeling
Upon her Mat --

I've known her -- from an ample nation --
Choose One --
Then -- close the Valves of her attention --
Like Stone -- 

Emily Dickinson

Fishing and Plumbing

All this waiting and talk of miracles makes me nervous, so let's bring it back down to the everyday.

I'm enjoying going back through photo albums, of which I have many, and especially as my boys get older and bigger and more -- let's say it -- teenagerish, I'm trying to remember what it was like back then -- in the olden days. Those two boys right there are growing up, and they're taxing me more than I can elaborate on the old blog. Let's say this, too: they don't kiss each other anymore, and their interaction with Sophie is minimal. I think about it every single day but write about it even less -- the toll the seizures have taken on those boys.

Wouldn't it be incredible if Sophie's seizures stopped? I said to Henry yesterday as we got ready for dinner. (By the way, she only had a scattering of seizures yesterday and was otherwise quite calm, if a bit sleepy.)

 I want her to talk, Henry said. He hasn't said that in a long time. When he was small, he wished on birthday cakes and threw coins into fountains with that wish. He whispered it into my ears and probably Santa's. During the first couple of years of Catholic school, when he got a bit Jesusy, he told me that he prayed every night that Sophie would talk. When she didn't talk, he told me that he didn't believe in God, and I told him that I understood but that we don't ever really know why things happen and why they don't. I don't know when the desire for her to talk or the wish that she'd be "normal," began to fade for him, but I imagine it's happened as subtly as he has grown up and away from the boy you see in that photo.

Do you want her to talk so that she seems more like a normal person? I asked him. Asking questions of a fifteen year old boy is like fishing or maybe even plumbing. You put the bait on the line and fling it out, far. Then you start reeling in, slowly, before you lose your concentration or nod off. When things get stuck, you need to put your hands on your hips, cock your head and just look around, first. There's no telling whether it's just stopped up from everyday stuff or there's something more insidious, like tree roots and dirt in the mainline. I can fish and plumb with line and snake.

Sort of, Henry answered. I really just want to know what she has to say.

About the marijuana? I asked, or whether the seizures bother her?

About everything, Henry answered. I want to know what she thinks about it all.

Waiting

Anzo Borrego Desert, 1998

dedicated to those who know

I've carried a fortune in my wallet for probably fifteen years. It sits just over the birth date on my driver's license, under a plastic sleeve. I have to move it aside when someone asks to see my identity.

The fortune states:  YOU WILL SOON WITNESS A MIRACLE.

I'm finding the wait exhausting, my sustenance the tenuous connections made, seemingly, in ether, sustained by something shared and necessarily cryptic to everyone else.

Realm of Caring News Conference

So, we sat with Sophie and hundreds of other people in the above auditorium, listening raptly to Josh Stanley, a few of his brothers (there are 6 of them and 11 kids in total!), Paige Figi (the mother of Charlotte, of Charlotte's Web fame), and Ray Mirzabegian who brought us all together, as well as Jason David who you can read about here. The auditorium was some old-timey venue, and before the meeting started, I felt as if I were on the set of a Fellini movie. Honestly, sometimes my life feels like a Fellini movie on the good days -- and perhaps an Ingmar Bergman on the bad. The news conference was wild and amazing and emotional. I joked to a friend that those Stanley brothers are like Jesus and the Apostles, and I don't mean that in any religious sense. I mean they're on the edge -- perhaps of a sort of revolution -- and they're gorgeous.

I'm glad that I didn't end up wearing the Teletubby costume, because it's all going to happen. We're going to get Charlotte's Web here in California, very, very soon, and until then I have a small bottle of tincture, given to me by someone very instrumental in this whole revolution, and we're going to try it. Maybe even tomorrow.

We talked about facts today; we heard stories (lots of stories from families with kids with epilepsy who began seizing after vaccinations, who began seizing out of nowhere, who were seizing in utero, who have been diagnosed with syndromes and traumatic brain injuries and from people with multiple sclerosis and arthritis and cancer, etc.). We learned about the scientific evidence that cannabidiol has neuroprotective qualities, that it's being used effectively for patients with PTSD, with depression and with all number of neurological disorders and cancer. It went on for hours and hours and it was insane and it was completely and utterly sane.

I will keep you posted. Email me if you absolutely need to know every detail or if you have specific questions. I will try to answer them. If you live in one of the more backward states (ahem -- Texas, above all and most of the southern states), have no fear. These people are working toward making this medicine available to every child that needs it. There are studies being conducted or begun in many of the major epilepsy centers in the country. It will take advocacy and education -- not activism -- because of the draconian federal laws in place that make marijuana equal to heroin and methamphetamine as a strictly controlled narcotic.

I am, of course, excited to see whether this will help Sophie in particular but I'm also certain, now, that it's helping a whole lot of kids like her, for real. It is at once inspiring and utterly draining which I can imagine is mainly because it comes, for us, so very late.

We shall see.