Saturday, October 25, 2014
Sophie won't stay still, and when it doesn't make me crazy, it makes me -- crazy. I don't know what to do about anything lately, and every admonition to just breathe, the majority of which come from within, I feel even crazier. Tonight, I fed her dinner in her stroller thinking I'd have more control, but rice and Korean beef went flying and juice dribbled out as she panted and flung her head back and forth and fidgeted and for a moment I wondered if she had Alzheimer's or some sort of brain tumor that was making her do what she's doing, behaving this way, and then I thought that if she had a brain tumor, she'd probably also be vomiting or at least have a headache and then I thought if she had a headache, she'd be in pain, but maybe not because the time her tibia snapped during a seizure, she didn't walk on it, but she didn't cry or feel any pain that we knew. It's all very complicated and it's all absurd and while you might wonder how we do it, I want to say that sometimes we don't do it, and tonight is one of those nights when I wonder who I'd be without this.
|With cousins in Florida, sometime in the late 1960s|
The sense of being far away is not something to overcome but to respect and include in loving awareness. This is the way to work with our difficulties, to include them and learn from them. Feelings that seem like adversaries can become our allies when they’re included, and mindfulness offers us nobility and joy as we open to what is present completely.
In fact, there can be something more authentic in the times you feel something’s missing than when you feel satisfied. The more deeply you practice, the more you realize how much there is to learn. Even the self that would judge your experience is not a problem to be fixed, but to be held with compassion as part of the path.
This is a way to keep loving awareness in the center of your life, even when it feels far away. Remember, where you are now is the perfect place to practice.
Founder and Guiding Teacher of Insight LA
from The Perfect Place to Practice
Friday, October 24, 2014
Oliver and I had a Friday field trip this week to the Los Angeles County Museum of Art where we visited an exhibit called Samurai: Japanese Armor. We had studied the samurai last spring in our world history book, so it was a nice complement to what we'd learned. Whether you're into Japanese warriors or not, and I'm actually not, the whole thing was spectacular. Those guys knew how to dress, and the artistry was fantastic. The fact that these elaborate costumes on both man and horse are from as early as the 14th century made the whole thing thrilling.
Reader, what did you do today?
I have no other photos from last night -- the Shebooks reading in Eagle Rock -- than the one above which cracked me up, unless you want one of the great Denise Emanuel Clemen, author of Birthmother, and I about to plant a big smack of a kiss on one another's lips for a mutual friend who couldn't make the event. I'll spare you that sight, though, and just say that the event was wonderful. I'll post the links to the short memoir and fiction of the other writers and mine, so if you're hankering for some awesome writing and have an extra $2.99 lying around, go for it!
On another note, I'm currently in the business of just say no, with a sort of twist on Nancy Reagan's ridiculous admonition so many years ago. The twist is that the advocacy is in the field of medical marijuana and getting lawmakers to ease up on the laws. There's a formidable group of women and men who work diligently on all of this, and I've done my best to publicize their efforts here on the blog and on my Facebook page. I was, at one point, one of the designated advocates to work on the issue in California, but this morning I decided to just say no. To be honest, other than writing religiously here about the issue, particularly as it pertains to Sophie, my efforts have been minimal. I am comfortable with what I've shared -- our personal experience -- and believe passionately that every single child in this country should have the same access to a medicine that might help their own child with refractory seizures or other diseases. I also believe that marijuana should be legal -- yes, even the stuff that makes you high. Period. However, I just don't have it in me to do the non-profit foundation stuff anymore. I don't want to be a part of an "army" with all that entails -- the war imagery, the in-fighting, the politics, the politics, the politics. I really don't have it in me. I've told myself that wimping out is my perogative -- after all, I've been doing this for nearly twenty years, and many of the people working on this current "campaign" have very young children, have no inkling of the toll it takes on some people, year after year. I feel that toll, and I'm actually not ashamed to admit to it.
So, I'm just saying no. When I stare at that sign about walls, I think, of course. I am a wall in many ways, very strong and built of peasant stock. Many people lean on me, have leaned on me, continue to lean on me, and that's good. I'm grateful for my strength and grateful that I have the wherewithal to provide support. At a certain point, though, I will fall, and just as I realized very suddenly one day long ago that I was in charge of Sophie and that the medical world was not going to help us, I realize that I am in charge of me and have to minimize some of the leaning. Does that make sense? I'm not saying that I don't want to help anyone anymore. I'm just saying that this campaign is just too much for me right now, and I'm backing out.
Here are the Shebooks links. You can also buy these titles on Amazon!
Elizabeth Aquino Hope for a Sea Change
Denise Emanuel Clemen Birthmother
Laura Fraser The Risotto Guru
Mona Gable Blood Brother
Zoe Rosenfeld Owl in Darkness
Wednesday, October 22, 2014
As the world shifts its attention from Ebola and reels from the news that another Hollywood celebrity has chosen to butcher her original face for a new one, those of us in the medical marijuana community got a sad email and update from Realm of Caring who had been in the process of removing people off of its many thousands waitlist with the intention of shipping them Charlotte's Web Hemp Oil. Here's the gist of the email:
Unfortunately, despite the fact that the U.S. imports more hemp foods than any other country, the common association of CBD with high THC cannabis has caused more scrutiny for these hemp products than expected. For example a Minnesota mother may be facing charges for possessing a CBD product which she obtained for her son. Such tragic events, combined with the ever changing legal landscape of hemp/CBD products, have forced us to reconsider all potential ramifications of our previous distribution plans. Simply put: the last thing we want to do is put the families we serve in jeopardy.
As a result, at the strong advice of our legal counsel, we have decided it is in the best interest of both present and future clients, as well as the longevity of the ROC program as a whole, that we hold our distribution plan to higher standards than the conventional hemp industry.
We sincerely apologize to those of you who will be most affected by these changes. We ask for your patience, understanding, and help as we work to educate and comply with federal agencies and to change the laws which block people from safe access to products like Charlotte’s Web. Please know that we are doing everything we can under the circumstances to help as many people as possible.
In a nutshell, even by classifying the high CBD product as hemp, the Stanley Brothers and Realm of Caring are concerned about the risks people who acquire the oil for their children might have in those states that don't have laws like California's and Colorado's. To protect them from possible prosecution, they state that they will be seeking clarification from the appropriate agencies in all 50 states in order to determine the legal accessibility and risks of possession of CBD products. I know many people who were so excited, so uplifted by the prospect of finally getting Charlotte's Web. They have children with epilepsy -- children who have all had uncontrolled epilepsy despite numerous medications and treatments over many years. These are children like Sophie who went nineteen years without significant respite from seizures and the side effects of 22 medications until she tried Charlotte's Web.
This is a complex issue, and I've felt uncomfortable at some of the infighting that sometimes occludes what this whole thing is really about -- our children's quality of life and ability to live to their full potential. I couldn't begin to explain it all here on this blog. The people at Realm of Caring and elsewhere are working incredibly hard to advocate on so many levels, and I am holding my breath that change will come sooner rather than later.
In the meantime, I hope you'll educate yourself about this issue. Here's a great PDF file (I think you can access it, but if not, go to the Realm of Caring website for more information) to read more information about this latest development. Put pressure on your legislators, put pressure on the federal government to help make these changes. It's absolutely critical.
And here's a great story that appears in Time Magazine.
any unplanned event that causes the closing of one lane of traffic for 30 minutes or more
defined by California Highway Patrol and originated in 1955
by Lloyd "Sig" Sigmon
This morning, when it was still dark outside, I texted a friend that I'd be looking for signs today. I didn't mean street signs, but real signs that everything was going to be ok. Then I put on my red dress (see yesterday's post) and got out of bed to fix Henry's breakfast and drive him and the rest of the carpool to school. It's quite a haul to Henry's school -- probably only five or so miles that can take anywhere from twenty minutes to hours, if there's a problem on the 101N. This morning, there was a problem on the 101S, though, which meant my ride home was going to take a looooooooooong time.
Was this my sign?
I surrender to traffic, to tell you the truth (but do complain about it a lot). It doesn't make me angry as much as it makes me feel entirely weak, whimpery and ineffectual. At best, my mind wanders into the realm of -- well -- I don't know where it wanders. I think of nothing. You won't find me in a state of road rage other than an occasional derisional word I'll direct toward the weaving BMW driver (why, why do all BMW drivers act so cocky?), and this morning was no different. Once I heard on the radio the dreaded SIG Alert words, I decided that I'd take Ventura Blvd home and listen to Mary Shelley's Frankenstein, but since everything today was going to be significant, a sign, I felt repelled by the reader's placid English voice and realized that I didn't want to think about horror and the creations we've wrought on this earth (because everything just is) even as brilliant metaphor. I pulled into a Jon's parking lot to download some Pema Chodron. Her name popped into my head, so I took that as a sign. I thought I had chosen a book, but it turned out to be a seminar that she taught, and my mind wandered to the sound of her sweet voice and gentle laugh as I meandered down Ventura and then into Hollywood.
Be compassionate and kind toward all beings and particularly yourself, Pema said. I closed off that line of traffic in my head that's bogged down, stuck and afraid, and felt my heart open up right there in my red dress in my sexy white Mazda on Ventura Blvd.
Tuesday, October 21, 2014
Lying around all day
with some strange new deep blue
weekend funk, I'm not really asleep
when my sister calls
to say she's just hung up
from talking with Aunt Bertha
who is 89 and ill but managing
to take care of Uncle Frank
who is completely bed ridden.
Aunt Bert says
it's snowing there in Arkansas,
on Catfish Lane, and she hasn't been
able to walk out to their mailbox.
She's been suffering
from a bad case of the mulleygrubs.
The cure for the mulleygrubs,
she tells my sister,
is to get up and bake a cake.
If that doesn't do it, put on a red dress.
Monday, October 20, 2014
Weird, right? These new phones are a marvel. I am not an iPhone lady, but I am a Samsung Galaxy lady, and Oliver showed me how to turn a plain old photo into a stylized creation. I don't know what you call this, and it's not even an app, but the possibilities are endless, and I wasted a good bit of time twiddling around with different settings today. Maybe it wasn't really wasted time, though. I also taught Oliver about grammar (subjects and predicates), read him some history (the relationship between women fighting for their rights in the eighteenth century with the abolitionists) and listened to some Johnny Tremain, as we drove around the city. Yeah, remember old Johnny Tremain? I read it in eighth grade, too, and while I didn't exactly love it, I remember it, and there's comfort for both Oliver and me that he's reading something at "grade level," for what that's worth. This homeschool thing is a lark most of the time -- I wish everyone would take a jab at it and help me to dispel some of the illusions about it -- or delusions that you have to spend $40,000 a year for your kid to learn. But back to the wasting of time (not money). I confess to being bored out of my mind whenever I see one of those posts or news clips about how technology is killing our children or how we're being sucked into the internets, forswearing all social connections. Or the end of books or film or Buffalo sandals and appropriate underwear. I'm sure there are plenty of folks out there who have troubles with monitoring their screen usage (and I'm not above yelling at Henry, in particular, to put that thing down!). just as there are those that watch too much porn or drink too many glasses of wine or smoke too much pot, but let's face it. The things are here to stay, and rather than freaking out about them or instituting those unplugged rules, why doesn't everyone just relax? I have this theory that as technology pioneers, we are really just caught in the slipstream of where we're going. Does that make sense? We can't see that far ahead.
Los Angeles! Come to our Shebooks Shebang!
Shebooks Party and Reading
7:30 - 10 pm
Center for the Arts, Eagle Rock
2225 Colorado Boulevard
Los Angeles, CA 90041
The night will feature drinks, music and readings from Shebooks authors:
Denise Emanuel Clemen
Sunday, October 19, 2014
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.
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
Get on Up
The Grand Budapest Hotel
Friday, October 17, 2014
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
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.