Sunday, October 19, 2014

Shooting into the light

That time we lived in the old evangelical church with the full-immersion baptismal font right in the middle of the living room. Was there a painting on it, some fake tile or the rivers of Babylon? The altar was a kitchen, but we rarely cooked, and the only thing I remember is a microwave dinging when your spinach from the can warmed through, a pale slice of cheese melted on top. I think there was an old television, but we didn't have cable, and besides for Jeopardy and Star Trek, it was never turned on. The front doors -- it was a church -- opened to a vestibule and off that was an office where your shuffle was silenced by fake fur on the floor and all four walls. Or was it brown shag carpeting? You took your spinach in there and wrote on some giant early computer. It's funny, but I don't remember the bathroom at all. I think it was off the closet which was big for closets. I lined up my business clothes along the back wall, my pumps below. The bedroom was right there, to the left, the bed a boat where we drifted in and out with the tides. The back door, too. I think it was off  the bathroom that I can't remember, and just across the cement path, where those Laotians with the beautiful babies lived in a concrete outer house, the smells of something cooking that didn't seem right.

Saturday, October 18, 2014


Of all the photos I took tonight of Henry and his beautiful date to the homecoming dance, I think this was my favorite. There's a story behind it about last minute hysteria, white shirts that were too small, a neighbor jumping in to give him another one, its starched cuffs and cufflinks (new to Henry), and  the white wrist corsage for his date in a plastic box. I looked at that boy there and practically burst with love for him -- not because he's so damn good-looking but because he's so all grown up and beautiful yet still my little Henry-boy.

Saturday Three-Line Movie Review

Gone Girl

I confess that I'm one of the few people in the universe that didn't unequivocally love the book (but rather thought it was one of the more hateful things I'd read in years) and had no intention of seeing the movie, but I was persuaded to do so when the alternatives were to attend a high school football game, hang out in the Valley or watch Dracula: The Truth Untold, so you can imagine my desperation and low expectations. Despite the visual candy that is Ben Affleck and Rosamund Pike, I maintain that just like the novel, the movie is a slick and soul-less creation with no sympathetic characters that made me long for the halycon days of real thrillers and intimate portraits of marriage and lust, not to mention a hot shower. When my children texted me about two hours in that the football game had ended, I gratefully clambered over the rapt audience and left the theater, missing not only Ben Affleck's supposedly glorious netherparts, but also, evidently, and as usual for me, the depressing cultural zeitgeist in this, the two thousand and fifteenth year of our lord.

More 3-Line Movie Reviews

Saint Vincent

Get on Up
Begin Again
The Immigrant

Cesar Chavez

The Grand Budapest Hotel

Labor Day 

Friday, October 17, 2014

Go Whoopie, Paige Figi and Joel Stanley!

Watch the link from this morning's The View, here.

What can you do to help us? ABC wasn't allowed to talk about "the politics," of medical marijuana, but many of us are working hard to get a bill passed in the United States Congress. Titled HR5226, the bill amends the Controlled Substances Act to exclude therapeutic hemp and cannabidiol from the definition of marijuana. The bill does not impose additional restrictions on those states who have already legislated the use of cannabis and is an incremental approach to provide relief to those suffering from ailments and diseases that could benefit from CBD oil and therapeutic hemp like epilepsy, severe seizure disorders and other neurological impairments.

By moving the non-psychoactive supplements into a separate category, this bill will not only provide quicker access to patients, but will allow these safe supplements to be produced on a mass scale under agricultural regulations while keeping the price affordable for patients.

It simply makes no sense to keep these products, which have no potential for abuse, lumped in with psychoactive compounds that are, and likely will be for a long time if not forever, strictly regulated.

You can write your congressman or woman and ask them to support HR 5226 -- The Charlotte's Web Medical Hemp Act 2014.

From a California mother and advocate:

This is what prompted HB105. We recognized the many needs beyond epilepsy. We did our best. Our best made us the first state in the country to pass this type of hemp bill. Now, we're asking the US to do the same via HR5226. Both Congressman Stewart and Bishop have co-sponsored along with some 30+ other Congressmen. Send a respectful email to your Congressman asking him or her to co-sponsor HR5226.
The bill is brilliant. All the it does is separate the definition of hemp from marijuana based on THC levels and removes CBD, a natural derivative of the cannabis plant which doesn't produce a high, removes both from scheduled drugs.

Thursday, October 16, 2014

Around whom I spin

I've been worried about Sophie lately. Maybe the word lately is superfluous. I have worried about Sophie and worry about Sophie perhaps all the time, but lately I've been worried about Sophie. She has some strange behaviors that are subtly different than any she's had before. She rotates her right ankle a lot, almost collapses it onto its side. She contracts her right arm a lot, too, and flings out her right leg. She seems uncomfortable or maybe not. I don't really know what she's feeling. She has less seizures of course, because of the Charlotte's Web, but we're still waiting to get the higher ratio oil that really stops them. Until then, we've compromised and are not weaning any more Onfi. She goes on liquid fasts periodically now and just refuses to drink. I don't know what that's all about, so I basically force it into her -- take the little plastic thing that makes it a sippee cup out of the lid and tilt it into her mouth. She is very resistant to a lot of things and only seems happy and content when she's in her room, alone. She lies on her bed or sits cross-legged on the floor and fiddles with beads and baby toys. Don't tell me that this is what teenagers do, because it's not. I think, at best, that her brain is not so preoccupied with seizures so she's more aware of her surroundings, and the sensory input might be almost too much for her. She might be blocking it out, stilling the chaos. Again, I have no idea. When she arches her back and refuses to sit in a chair, I wonder if she's in pain or whether she's developing behavior problems. I hate this kind of worrying. I've said it before. It's the little things, sometimes, that do me in, make me crazy. If I ever do run away to Bora Bora, it won't be because of Sophie's epilepsy or the fact that she will never be normal. It will be something simple that breaks me, a link on my twenty year old tale that like a Christmas light on a string just goes out and brings down the whole strand.

Today, though, it was a little thing that made Bora Bora just another island in the South Pacific. Sophie's teacher sent me that photo, with this text:

Nice time for Sophie during the earthquake drill. Nice, soft turf and soil. She got to walk without physical support in the sunshine for a while. Of course I was right there. But I couldn't resist the urge to snap a happy picture of her in a rare moment of liberation.

Stuff like that makes me want to stick around. I am going to face it. She is the person around whom I spin.

Angry Yoga and Unexpected Salvation

Thank you, dear Michelle.

Wednesday, October 15, 2014

High Time, About Time, Good Time

The Shepard Fairey mural at the end of the Trader Joe's Alley
La Brea and 2nd

Sophie's wheelchair approval went through, and the chariot has been ordered. Since it began its journey to us back in April, I have no idea when it'll land, but hopefully before Sophie demands some new and more exotic transport.

It's high time.

We're still waiting on paperwork for the ambulatory EEG, and I'd be lying if I told you that I haven't put much effort into making that happen because -- well -- I'm tired of doing it.

Good time.

Right now, I'm patiently coaxing fluids into Sophie as she is on some sort of liquid fast. I have no idea what that's all about, would like to imagine she's protesting some injustice somewhere in the world, but in the meantime, you do what you have to do. That means lying on my side and putting the sippee cup to her lips every ten seconds and then pulling it away before she throws it away.

If I did, it'd be a good time for a high time.

Reader, how was your day?

Mexican House Envy

via AD

You'll find me here today.

It's part of my news black-out as of 9:23 am, Pacific Time.

At least in my mind.

Tuesday, October 14, 2014

Broccoli and Autism and Seizures, Oh My

Carlsbad, CA 1997

Sulforaphane is believed to prompt a cellular stress response in the body much like a fever does when a person is ill. Researchers said they were inspired to try the treatment after hearing anecdotally from families that fevers seemed to trigger improvements in autism symptoms.“We believe that this may be preliminary evidence for the first treatment for autism that improves symptoms by apparently correcting some of the underlying cellular problems,” said Paul Talalay of Johns Hopkins University School of Medicine, a co-author of the study.

That quote is lifted out of an article that I read today with the title Autism Symptoms Eased By Broccoli Extract, Study Finds. Despite reading it on my Disability Scoop digest, I almost thought it to be a joke, but I clicked anyway and was blown away, especially by the sentences I've highlighted about high fevers. I have probably written about it here before, but in case I haven't, Sophie has always had a near-complete cessation of seizures during periods of high fever. In the days leading up to illness, she might have increased seizure activity, but once the fever begins, they nearly always have stopped. She doesn't really get sick like that anymore, though, so I'd forgotten about it. I do remember that we'd joke about instigating a treatment of provoked fever as an anti-epileptic. She is markedly calmer and more relaxed then, too, and while we've always attributed that to fatigue or a symptom of the fever/illness itself, the cessation of seizures (as opposed to exacerbation, like most people with epilepsy) is remarkable. No one has ever responded to that observation, though -- at least not her doctors.


I have also heard of the improvement in behaviors that some people with severe autism experience during fever, and I know that while Sophie has never been technically diagnosed with autism, the two diseases share many characteristics and many people with autism will also experience seizures at some point in their life. Anyway, this article is fascinating, and I'm thinking about finding some broccoli extract and adding that to The Regime.

Here's the link.

Monday, October 13, 2014

Marlon Brando and April

Our neighborhood "art" -- Lenin and Madame Mao
La Brea and 4th

It's late, and I wasn't going to write anything at all, but the back door is open and the screen door is letting in some cool air and finally the air-conditioner doesn't need to be on and over crickets chirping, I hear a man screaming the name APRIL! APRIL! APRIL! over and over. I wondered for a split second whether it was a homeless person on La Brea but prefer the hope that it's some Stanley Kowalski, or better yet, Marlon Brando in a tight white tee-shirt yelling April's name with his beautiful mouth.

On my walk this morning,

I only looked up for a moment, but a key was hanging from a high branch. I will take it as a sign that I can open a door somewhere. I also saw the most perfect pink rose with one drop of dew on it, and a line of little black plastic bags of dog poop, all neatly tied with a bow.

Sunday, October 12, 2014

How Not to Figure Things Out

dedicated to Mary, Tanya, Heather and my Mom

It occurred to me the other day that I'm not going to figure things out. I probably use that expression many times a day in various forms -- I can't figure it out, You'll figure it out, Figure it out! I need to figure it out, Just figure it out! -- and certainly popular culture is filled with tips on how to do it or on how other people have done it. I can figure out a math problem or how to work my new phone or what to do about Oliver's schooling or how to help Henry navigate high school, but there's no figuring out the really big life things. I'm not saying that things just happen without effort and thought, but it's a rare big life thing that is figured out in the sense that one comes to an answer in a direct way. Does this make sense? Because there's a lot that is unbloggable now in my life, I might sound vague, but what I can draw an analogy to is my early years with Sophie, right after she was diagnosed and probably for the next ten years or so when I was always trying to figure things out. This meant many active hours of brain anguish, of being on all the time, in the event I'd miss something. When I say that, I mean it quite literally. I spent conscious and unconscious hours worried that if I didn't do something or think something or research something or talk to someone about something, I'd miss the chance to fix Sophie. In other words, I would miss figuring things out. I remember with an almost PTSD-like intensity the cover of a Time Magazine article about child development and the brain, how at age three, a window shut on language. I believe that has been debunked since then as we've discovered the brain's capacity for amazing feats of regeneration, but the sound of that window slamming haunted me for years. I spent a lot of time trying to figure things out before that window slammed and well afterward.

When I sat down to write this morning, I looked at the collection you see in the photo and realized that I'd made a sort of shrine, and that gazing often blankly at these things helps me to center myself and channel all the energies I have in me and outside of me to create and to write. There's a card there at the back that a blogger friend who's become one of my best friends sent me. There's a little jade statue of the Buddha, and a tiny tin of holy dirt from a shrine in New Mexico that my friend Tanya brought me. There's a bit of driftwood from the beach in Victoria where I spent a week last year, a week given to me by Heather McHugh and her organization Caregifted. There's a little house behind it with the words A house without books is like a room without windows. These objects sit on a box of postcards from Penguin that replicate one hundred book covers, and in front is a glass coaster that my mother gave me years ago with a sweet saying. I always feel joy and content when I write, to tell you the truth, and that's true for both online and off-line writing, but particularly so when I sit in a sort of reverence and allow it to just happen. I hesitate to use the word channeling for all its over-used weight, but I'm not sure what else to call the release of fingers on keys, the rush of language and words falling into place. I'm not figuring things out, though, and it's not about me.

I get a lot of emails and telephone calls from people with little children who are new on the path of disability or epilepsy. I'm always struck by their bravery and by their sense of urgency as much as by their anguish. I recognize all of their emotions because I've had them or continue to have them. When I cast my memory back to my own early days with Sophie, I remember the visceral details of trying to figure things out, but I don't remember much of who I was or how it happened, or even how I did it. I want to say, sometimes, you won't figure things out, but even twenty years later, I don't have the wisdom -- or presumption -- to do so.

If I could, I'd tell them how not to figure things out, but I haven't figured that out either, other than to treat with reverence and love this place inside of me that persists in opening to possibility.

Saturday, October 11, 2014

Saturday Three-Line Movie Review

Saint Vincent

The only reason I'd even mention the movie Gone Girl here is not because I went to see the movie (and I won't because I hated, really hated the book), but because I want to prove that I'm not some kind of reactionary or pretentious contrarian. I really can't get enough of Bill Murray and realize that you probably can't, nor can you or you or you. Bill Murray in Saint Vincent is Saint Vincent, the supporting cast, brilliant little planets to his sun, and me (and you and you and you) bathed in light for having watched the show.

More 3-Line Movie Reviews

Get on Up

Begin Again
The Immigrant

Cesar Chavez

The Grand Budapest Hotel

Labor Day 

Friday, October 10, 2014

Dispatch from the Verizon Store

I know I'm late to the game, but Chipotle's disposable drink cups are printed with Cultivating Thought Author Series, and while I read about it somewhere a while back and thought it sounded pretty ridiculous, I have to say that it sure came in handy today after the second hour of standing on my feet at the Verizon store where the Young Verizon Clerks worked at a glacial pace to upgrade the four phones that our family owns. I'm not complaining or anything because how can one complain about owning four smart phones without sounding like a privileged jerk? But really -- how did we get to a world where you can wait for hours at a Verizon store for your smart phones to be updated and also read a bit of Toni Morrison and Malcolm Gladwell's writing on the back of a paper cup? The stories are even illustrated, albeit awkwardly, as you have to turn the cup around to really see the drawing. Some first world problems might even be negative number world problems, they're so lame. Gladwell's story on my cup was a little memoir called Two Minute Barn Raising, and it made me laugh out loud and then sigh, sated by the glory of words and those who wield them so beautifully. I'm almost tempted to type it out right here, but who knows what sort of copyright laws I'd be violating if I did so. I wonder if writers are paid for every paper cup read or are they paid a set fee? Do they write something special just for the cup or do they pull something short out of their archives? I didn't get a chance to read the Toni Morrison because Oliver threw it away before I realized that there was something good to read on the cups, and that made me feel a tiny bit guilty. I might keep the Malcolm Gladwell cup on my desk for a few days, though, to make up for it. I would have liked to see a David Sedaris story on a cup, though, or even an Annie Lamott, and when I exclaimed over how great it was to have something to read while we were waiting, The Brothers looked at one another and rolled their eyes. There's not much I can do or say that doesn't substantiate their belief that I am an insufferable loser -- an old one, at that. I won't let on that I feel superior to them in my preference for great writing on paper cups over shiny smartphones that take foreeeeeeeeever to set up.


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