Sunday, August 31, 2014

Continued Squirrel Girl Imperil

So, this morning I walked outside to get in my car and drive the two blocks to CVS in my sexy Mazda to buy a cool mist vaporizer that might help alleviate my and Sophie's terrible coughs that I guess I'll blame on a virus worsened by the incredibly dry air that's accompanying the drought caused by global warming. Did you get that? I was immediately made aware of something angry chittering at me. I looked up, and there she was -- The Mother Squirrel. She stayed on that branch for what seemed like minutes but was probably a few seconds, and the whole time kept up the most angry racket of mutterings and growlings. For a split second I felt terrified, certain that she'd come leaping off that branch like some kind of Monty Pythonesque beast and splay herself all over my guilty face, but then I remembered that as a human, the world is under my dominion***, so I pretended bravado and looked down for a moment to adjust my phone, took the above photo and then attempted an Instagram video as she scampered away. Basically, I got away with a scolding, but I'm certain she was pissed at me for not taking care of her baby. I have no idea whether her baby is even alive, but when I got into my car, my other least favorite animal appeared from under my car -- a big, fluffy black cat -- which makes me a tad suspicious that she was waiting around for another baby to fall from the nest.

In all seriousness, if there's such a thing as karma, this might be a testament to its veracity. Baby squirrels falling from nests, black cats lying in wait, sexy Mazdas  instead of legs, a persistent cough and headache, no rain for eight months -- what does it all MEAN?

***Just kidding. I don't really believe that the world is under my dominion. I was only quoting a very well-known Mormon blogger who years ago poo-pooed global warming with that Biblical imperative.

Saturday, August 30, 2014

A City Girl and a Squirrel and UPDATE

UPDATE: The squirrel has disappeared. Oliver noted that it was there one minute and gone the next, so we're hoping it recovered from the fall and scampered off to join its brethren.

That thar is a baby squirrel that might have fallen out of a tree that I nearly backed over but noticed as I walked to my car. I didn't scream out loud, but I screamed in my mind. In case you didn't know this about me, I'm a city girl. In fact, many moons ago, I had a roommate during my sophomore year in college who was a sweet, sweet young woman from Beulahville, North Carolina. Despite the fact that she had a Jesus is Lord Carolina blue frisbee pinned to her side of the room and I was the type gal who sometimes slept the night out, she never judged me nor tried to save me, and we became great friends. One weekend, she invited me to her home in Beulahville, and since I was dying to go to such a bucolic-sounding place and knew that I'd eat delicious food, I accepted. Her daddy was a turkey farmer -- he didn't have turkeys out in the dirt, pecking around (or is that chickens) but rather housed them in several vast football field sized barns. When you stepped inside, the din was outrageous. I think some people even wore earphones. There might have been millions of turkeys crowded in this giant barn, and the feathers were flying, the stench was outrageous, and I believe I raised my hands up to my ears and stood there stupefied. This was so many moons ago that I don't think we had expressions like organic farming or free-range, so when I stepped into those barns with my hands over my ears, a bit green at the edges, my roommate's daddy just hooted and hollered at me. He had the thickest of North Carolina accents and was as sweet as sugar on a stick, as my Alabama friend Sybil used to say, and later that day when he fiddled with his radio, he screamed at me, How'd ya like to get on my ham radio, city girl? 


That squirrel.

After screaming in my mind, I noticed that it was still moving so I ran inside and got Saint Mirtha who not only watches Sophie most Saturdays but is good in a pinch for things like taking a brown paper bag and scooping up a baby squirrel. I disappeared in my sexy Mazda and went to Trader Joe's, but not before posting that photo on Facebook with a request for advice on what to do. I got a bushel o' advice, my favorites being get it the hell outside from a friend in Nashville who apparently doesn't know me that well and thought I had brought the thing in my house, and Here in Texas they'd just throw him in the stew from a southern friend who always makes me laugh. Mostly people were helpful and suggested that I call wildlife rescue, and a few people kindly sent me websites that detailed How to Care for a Baby Squirrel, and when I opened up those links, I screamed again in my mind and immediately felt bad that I'm really not as good of a person as I might seem because, really, the last thing I want to do is nurse a baby squirrel back to life, even if it is dying a slow death on a bag on my front lawn.

Where, where are the coyotes that come down out of the Hollywood hills and kill small dogs?***

***I can't even imagine what Anonymous thinks of me now.


In case you hadn't heard, California is in a very big drought. We're letting our grass go brown and dead because it's really almost sinful to continue to water it. Even with water restrictions in place, the sight of glossy green lawns makes my stomach turn, and I'm trying not to be moralistic about it. I think about it all day long, to tell you the truth, the drought and the brown lawn and maybe what I'll plant there or do to that space when my ship comes in -- or runs aground, I should say. Despite the drought, I took a shower today that was on the long side and very hot. I was hoping that it might help my cough. I know people don't believe in global warming, still, but maybe they will wake up when all the fruits and vegetables and nuts and grains that California provides to the world wither and dry up, too.

And speaking of heads up nether regions, there's a drought going on here in blog world, too, at least at this blog. I just don't have much to say. I dragged myself to a movie last night with Oliver, my friend and her son, but it was a very stupid football movie. I actually love a good football movie, even though I hate football, but this one was just dumb and sad all around. I can't even remember the name of it -- something about standing tall and proud? Football and the military -- two things that I just don't have the love gene for, I think.

Or maybe I'm just depressed, and if I pulled my own head out of the proverbial nether regions, I'd have felt moved by the story of how football orders some kids' lives who would otherwise have nothing.  Like Eeyore, though, my thoughts run more to the doleful, thinking that those kids are just pawns in a massive and gross money/education/bullshit machine that makes me despair.

A drought of the spirit.

Jeez. This is an unbalanced post, isn't it? How about a poem?

Take Love for Granted

Assume it's in the kitchen,
under the couch, high
in the pine tree out back,
behind the paint cans
in the garage. Don't try
proving your love
is bigger than the Grand
Canyon, the Milky Way,
the urban sprawl of L.A.
Take it for granted. Take it
out with the garbage. Bring
it in with the takeout. Take
it for a walk with the dog.
Wake it every day, say,
"Good morning." Then
make the coffee. Warm
the cups. Don't expect much
of the day. Be glad when
you make it back to bed.
Be glad he threw out that
box of old hats. Be glad
she leaves her shoes
in the hall. Snow will
come. Spring will show up.
Summer will be humid.
The leaves will fall
in the fall. That's more
than you need. We can
love anybody, even
everybody. But you
can love the silence,
sighing and saying to
yourself, "That' s her."
"That's him." Then to
each other, "I know!
Let's go out for breakfast!"

Jack Ridl
via The Writer's Almanac

Friday, August 29, 2014

Marie Ange

I was just riffling through a small box, looking for the business card of The Foot Doctor, whose name I can never remember, so that I can make an appointment for Henry, whose big toe appears to be acting up again, not responding to the Epsom salt soaks. Anyhoo. I was riffling through the cards and pulled out the above photo that I haven't seen in years, sent to me by my old friend Mary Angel (or Marie Ange, as we said in our bad French accents).  I'm still a tad sick, as is Sophie, and I'm feeling all whimpery, edgy, like the end of the world is coming and it's all centered around me. Do you know that feeling? I keep reading people's gratitude lists and keep staving off the sinking feeling that --what? Just a sinking feeling, I guess. A sinking feeling that has nothing to do with anything in particular. I could chalk it up to the virus I'm fighting -- these sorts of viruses attack the central nervous system, I think, and push me into mild depression. I guess. I'm not really sure of anything, to tell you the truth, other than that I have a sore throat and a vague feeling of dread and weirdness. Mary Angel is one funny lady, and we shared many laughs during the four years we were in school together, many at the expense of the evangelicals that surrounded us in family, friends and atmosphere. There was no mockery, though, just amusement and solidarity. I guess. She took that photo many years after college, though, when we hadn't seen each other for a long, long time, and while I don't remember where I was when she sent it to me or what I was feeling, I must have thought it funny enough to save and stash away. Today, though, I felt buoyed up when I pulled it out of that stack of cards, buoyed up and out of myself and into laughter. Pierced. Saved. I know.

Thank you, Marie Ange. Body piercing did indeed save my life, at least for today.

Thoughts (Not Rants) for the Day on Disability and Worth and the Supposed Welfare State

*** I'm re-posting this because I don't have anything to say today other than some paltry words about how weird it is to read of the ALS organization's request to patent the words "Ice-bucket Challenge" as their own and to continue to wonder how effectively they'll use the nearly $100 million dollars that they raised. Since my reservations about non-profit foundations and the way they conduct business in this country were met so vociferously and rudely the last time I voiced them, I'll stick to issues that I know of very intimately, like this one.

I read this article this afternoon as I languished, a bit sick, at home. For the record, I did do some part time work and home-schooled Oliver in American history and writing. The article was titled Aid to Disabled Kids Surpasses Welfare and states that the amount of federal money going to disabled kids through Supplemental Security Income programs has surpassed traditional welfare programs. You can imagine what this means. There will be people (conservatives) talking about corruption and those who milk the system and rely on government benefits, who don't use their bootstraps properly, who go on vacations when they find out they've qualified for disability and who are otherwise, losers. They will claim that the increasing numbers of children diagnosed with mental health issues, ADHD and other disabilities should actually be parented differently.

There will be people (liberals) blasting the conservatives for once again targeting the vulnerable, blind to white collar corruption and to military expenditures and waste that probably surpass the GDP of most second and third world countries, much less welfare and SSI expenditures. They will talk about the shrinking middle class, how the poor, truly cut off from welfare as it was once known, depend on SSI to even make ends meet.

What you probably won't hear, though, are the voices of those who benefit from SSI programs, many of whom are, literally, without voice. You won't hear about how difficult it is to actually get the benefits, how much education you have to have to parse out the requirements, and in the absence of education, the sheer stamina and persistence  to make sense of the paperwork, to navigate the system, to continue to care for the child with disabilities, to plan for her future with or without you. You won't hear the voices of those who have to continue to make a case for needing the money each year. You will hear that these people are working the system, making up disability so that they don't have to work, that their numbers are growing and America will go bankrupt dealing with them.

First of all, you know that I've a liberal voice, and my voice also happens to be Sophie's voice, since she doesn't have one of her own. Sophie began receiving SSI benefits monthly when she turned 18, the bulk of which I use to pay for the huge drug co-pays that her insurance company doesn't cover, any other medical treatments that her insurance company doesn't cover, her diaper wipes (I pay for her diapers with my own money even though they're covered under MediCal) and various toiletries, occasional clothing and apps for her iPad that she uses at school. Last month, I used part of the money to help pay for her two weeks at communication camp. I realize that some of this is luxury -- she could sit at home in her stroller (also partly paid for by SSI), next to me at my desk as I do my part time work instead of going to camp for three hours. Since I've never found a dentist that provides adequate dental care under Medi-Cal (Sophie receives dental insurance under Medi-Cal but none through our private insurer), I chose to continue to see our family dentist. It's expensive, and in order to keep Sophie's mouth healthy and because it's very difficult to brush her teeth adequately, we pay out of pocket every three months for a cleaning. The SSI money helps with that as well. Sophie's needs are met with a combination of government funds and those earned by her father and me, as well as generous donations toward her care given to us by my parents. I know that there are many, many people out there like us, making ends meet, not abusing the system and grateful for every bit of help -- both private and public. I know that without the combination of funding sources, many of us would have to resort to going into debt, to living far more stressful lives than we already do and to turning our children over to institutional care so that we, their caregivers, can try to find full-time jobs.

I understand that the system will always have corruption, and that some people will take advantage of that system, lie and cheat and steal in order to get something for free. I understand that part of my tax money is going to help the liars and the cheaters and the thieves, but I have a feeling that the vast majority of those that use these funds are doing so responsibly and because they very much need them. I understand that part of my tax money also goes to fund bombs and arms and war apparatus, even if I don't support those wars. It's a sort of price I pay to live in the country that I live in, a democracy where I supposedly vote for the representative that best works in my interest. I understand that people (and I know some of these people) who have millions of dollars but who are also veterans continue to collect what they're "owed," and while I believe that is pretty low-brow, even repellent, I also believe that my taxes go toward far more veterans who, after serving their country, are out of work, homeless, mentally ill, permanently injured or otherwise in need of them. For every Mitt Romney pumping money into tax havens or writing off dressage horses, there are countless businessmen and women getting into their cars and going to work, collecting their paychecks and paying their taxes.

What's the point of this post? Hell, if I know. I guess reading that article sent a frisson of fear into me. The fear is that the difficult job of caring for a person with disabilities in this country will get even more difficult. The fear is that this "difficulty" is really just a cultural construct -- that living in a nation that exalts individual responsibility to the exclusion of community makes my daughter's value recognizable only in dollar terms. The fear is the knowledge that she, and millions like her have to constantly prove their worth. I have certainly been proving her worth for the past nineteen years, and I suppose I'll have the stamina and grit to continue to do so, but damn. It's difficult.

Thursday, August 28, 2014

I'm going to watch this all day in lieu of connecting to the world

Laird Hamilton SUP surfing in Epic Malibu conditions!! He shoots the pier twice!!! from Dual Hemisphere Media on Vimeo.

That video was taken yesterday! I knew the waves were huge on Sunday when we were at the beach, and evidently Hurricane Marie is causing giant swells. Unfortunately, I've got what Sophie had and there's no use listening or watching any current events, but it's the first day of my new year, I'm happy to be alive and hope that in my next life I am a surfer.

It's coming on September, and it's hot. I wish that it would rain. I feel guilty even watering my potted lime and lemon trees.

What are ya'll doing today?

Wednesday, August 27, 2014

Gifts, Poetry and Cake

I've had a lovely day -- breakfast with my friend Jenni, flowers from those neighborhood cuties above, and a coconut cake that I bought myself in the late afternoon. Henry surprised me with a card and an apple, carved into a swan.

Who knew?

Oliver gave me the most beautiful blue reclining Buddha. Here it is in front of my friend Moye's gorgeous pottery:

I posted both the apple turned swan and the Buddha on Facebook, and Heather McHugh -- that angel saint poet who gave me the respite week last year and who is the founder of Caregifted -- wrote a comment that is a poem. Honestly, I am in awe and so honored. Here it is:

amazing how much they have in common, the swan and buddha, in these iterations... but though the steadiness of the buddha's eye is to live for, the seediness of the swan's eye is to die for.

Wow. Right?

And then someone left this link on my last post which I believe is perfectly suited to a person who was born in 1963.

So, there you go. Gifts, poetry and cake -- I am rich indeed.

Birthday Number 51

My first birthday
August 27, 1964

Good lord. Evidently my love of cake began at an early age. Look how young my parents were, how adorable! That was fifty years ago!

I guess there was another party which meant more cake for me:

Doesn't Sophie sort of resemble my darling mother in that photo?

Oh, here I am eating cake on my sweet sixteenth birthday with one of my oldest friends, Audrey.  She lives in New York City but usually calls me a day or so after to wish me happy birthday. We've made a ritual out of that, and I would never want her to call me on the actual day. I'll pick up the phone and she'll say, Happy Birthday! and I'll say It was the 27th! and she'll say I thought it was the 29th! and then she'll tell me that the only reason I remember her birthday is because she was born on the exact day that my parents were married, which was in October of 1962, ten months and several weeks BEFORE I was born, my mother is quick to remind me. You know, just in case I thought less of her. In any case, this silly ritual has amused Audrey and me for decades.

Sometime this week I'll probably eat cake with my other oldest friend, Moye, and we'll laugh together and I'll realize how much I love her and am grateful for our long friendship. Later today, I'll eat cake with my children, open presents from my sisters and my parents, be grateful for a body that is strong and healthy, and a  life that is blessed with beautiful children, family and friends.

I hope to live another fifty years on this wonderful planet, particularly if I morph into my southern Italian peasant grandmother and live in Bora Bora in one of those huts over the cerulean sea.

Tuesday, August 26, 2014

A Whisky Sour and a Birthday Eve Dinner

Emily, Sylvia, Leah and I have been taking one another out for birthday lunches or dinner for over ten years, now, and tonight they took me to a fabulous new restaurant around the corner called Republique. I got there early and sipped an amazing whiskey sour that had whipped egg whites in it. I know that's standard and authentic, but I'd never had it and can I tell you that that was one outrageous drink? The rest of our meal was outstanding -- we ordered so many dishes that I couldn't begin to remember and do justice to them here. There were salads and sushi and soft shell crab and vegetables tempura and rich pasta carbonara and crusty bread with salted Normandy butter. We laughed and talked and caught up for several hours  and ate so much that we turned down dessert before rolling out and back home.

Thank you, ladies, for a beautiful evening!

How to Figure Out What's Wrong With Your Non-Verbal Child 233***

***This is an advanced class, designated 233 for the number of months said child has been non-verbal. If you have not advanced through How to Figure Out What's Wrong with Your Non-Verbal Child 1- 36, you may not find this class relevant to your life. You can read on for random stimulation but might find the contents upsetting or completely boring. In any case, the above photo is from the other day, during a brief respite from shallow, heaving breathing.

  1. Take note of extreme number of seizures on one particular day, but figure it's the lower ratio CBD oil or the moon.
  2. Wonder if the extreme number of seizures is actually a portent of an earthquake.
  3. Take note of earthquake happening in home state but dismiss as reason given how far away earthquake is from home city.
  4. Ponder why child is breathing shallow and hard, constantly.
  5. Ask oneself: Is she breathing like this because she is having an asthma attack? Place head on chest and try to discern wheezing. Is she breathing like this because she is now more alert and thinks it's fun? Tell her to stop it right now because the breathing thing is driving everyone insane. Is she breathing like this as a sort of seizure? Observe that after getting higher ratio CBD, the seizures actually stop yet the breathing continues. Notice that she's particularly alert and happy and is once again having no seizures. Is the breathing self-stimulating? Decide that there's no way to tell.
  6. Ponder why child is reluctant to drink anything. Force child to drink by dripping liquid into her mouth.
  7. Obsess about hydration and constipation.
  8. Start worrying about having to call The Doctor.
  9. Tell oneself that every time you take her to the doctor, it costs hundreds of dollars, and it's probably a virus. 
  10. Last night, during a coughing fit, observe the child to really be struggling to breathe and coughing up some pale yellowy mucous. Observe that she is very agitated and uncomfortable.
  11. Worry that she might have aspirated something or have pneumonia. Think about the interaction of CBD and Onfi and wonder if it's all going to kill her.
  12. Calm down when she calms down after you apply some Baby Vick's Lavender Vapo-Rub, but call the doctor anyway and make an appointment to take her in the morning.
  13. Take the child in to the doctor and try to answer all the pertinent questions despite not being able to really tell the doctor what, exactly, the child feels. Be reminded that the last time the child was on an antibiotic, she was less than three years old when speech was still a viable hope.
  14. Help hold the child down so that nurse can get a throat culture to check for strep. Nurse, doctor and you talk in calm and determined voices as you hold the child down on the floor and dodge her flailing legs and arms.
  15. Stand up with child, look her in the eyes and firmly tell her to calm down, everything is all right. 
  16. Cry a few tears when she throws her head into the tiny Buddha necklace that digs into your clavicle in just the right spot to cause obliterating momentary pain.
  17. Feel grateful for the physical pain that can mask the emotional pain of the whole freaking situation.
  18. Repeat above steps so that doctor can listen to lungs, heart and get a pulse oximeter reading.
  19. Try to explain to doctor what you think might be the problem, and because doctor is so wonderful and states that since she never sees Sophie because she's always so healthy, she agrees and orders an x-ray of her lungs to check for aspiration and/or pneumonia.
  20. Feel relieved and grateful that the quick strep test is negative but listen with sorrow to the doctor explain that her throat looks pus- y and that we shouldn't rule out strep until the culture is fully grown. 
  21. Feel extra sorrow because this is why she hasn't been drinking. Her throat is sore, and she's unable to tell you.
  22. Drive to x-ray place and curse oneself, silently, for not bringing the wheelchair. Apologize out loud to child who is sitting in back seat, less agitated but still breathing heavily.
  23. Fill out forms in x-ray office with one leg over child because she won't stay still and you can't tell her to do so.
  24. Go into the back of the office, don a lead apron and help the technician to hold the child while another technician operates the machine. 
  25. Keep talking to extremely agitated child who doesn't understand what's going on, other than that she's wearing a heavy lead skirt, is being asked to raise her arms and stand in one place without moving.
  26. Cry a bit inside.
  27. Feel grateful when technician is finished, they get clear x-rays and she helps you to dress Sophie.
  28. Feel tearful when the technician kneels down and puts Sophie's shoe on her foot.
  29. Feel momentarily irritated when technician says God only gives you what you can handle! like you've never heard that statement before and actually might welcome it, but realize just as quickly that she is a goddess of a technician and who cares what bullshit she says so kindly?
  30. Receive the news that the lungs are clear and feel nearly orgasmic with relief.
  31. Walk back to the car and feel nearly tearful with gratitude for the valet dude who helps you to put the child in the car.
  32. Drive home wondering if you'll figure out what the hell is wrong with child, knowing that she probably just has a virus.

Monday, August 25, 2014

Part 2 of Ray Bradbury's Inadvertent Writing Prompt

February, 2012

Here's the Raymond Chandler quote again, in case you missed it from the earlier post:

“You have to write the way you see things. I tell people, Make a list of ten things you hate and tear them down in a short story or poem. Make a list of ten things you love and celebrate them. When I wrote Fahrenheit 451 I hated book burners and I loved libraries. So there you are.” 
Ray Bradbury 

You sent me some great hate lists, and now it's time to list ten things you love. I think what comes after that is something that you create from both lists. In fact, let's have a contest. Send me what you "tear down" from your ten hates and what you "celebrate" what your ten loves -- a short story, a play, poetry, a prose poem --and I'll read it. Hell, if you can write a novel really quickly with this prompt, do that and send it to me! I'll pick out the one I like best, post it here and send you a copy of my friend Brittany's new novel Angel Food. I've been meaning to review her raucous book, unlike anything I've ever read with an almost old-fashioned sense of story and plot and characters, yet so twisted in sensibility that your head spins in the best way, making you feel at once invigorated and breathless with anticipation. Oh, and the characters become as real as anyone you've ever met but are at once completely surreal, both terrifying and irresistible. How's that for a mini-review? If you're not going to win the contest, you need to click on over to Amazon and buy it and read it for yourself. You'll thank me for telling you to do so.

Here are ten things I love:

  1. the moon
  2. the word and the color cerulean
  3. fat and tedious novels written about characters in the nineteenth century
  4. those three children in that old photo up there
  5. pizza, pasta and yellow cake with dark chocolate frosting
  6. California and its temperate weather with no humidity
  7.  men with wicked senses of humor
  8. Van Morrison's voice, especially when he sings "Astral Weeks"
  9. Yosemite Park
  10. a stack of books not yet read with a few slim books of favorite old poetry mixed in

Your turn --

A Writing Prompt and Playing Around with Tumblr

by Roz Chast-- a goddess
via The New Yorker

I've been playing around with Tumblr, inspired by my friend Vesuvius, and wanting a place that I could curate stuff that I like and am inspired by without resorting to Facebook or even Pinterest, which both give me agita. There's a simplicity to Tumblr, I think, and I love the way it looks. Here's my Tumblr address: a moon, worn as if it had been a shell. Check it out and let me know what you think. I have no idea of what I'm doing there, but I imagine I'll keep it simple and just post periodically.

I saw this on Paris Review's Tumblr today and thought it an excellent writing prompt:

“You have to write the way you see things. I tell people, Make a list of ten things you hate and tear them down in a short story or poem. Make a list of ten things you love and celebrate them. When I wrote Fahrenheit 451 I hated book burners and I loved libraries. So there you are.” 
Ray Bradbury 

So what are ten things you hate? I'll start, and tomorrow we'll do ten things I love:

  1. Designer labels on children's clothes
  2. Evangelical/Fundamentalist Christianity
  3. Violent television and movies
  4. When people cut down trees
  5. Peas
  6. Electronic music
  7. Sexism
  8. Being called "Mommy" or "Mom" by people in the medical profession
  9. Hashtags
  10. Aggressive BMW drivers

Sunday, August 24, 2014

Beach Glory

It was, indeed, another day in Paradise. Henry had a four-hour lacrosse camp, so Oliver, his friend Mac, Sophie and I packed up my sexy Mazda (not the red one below that I covet) and headed to the beach, just down the road from the high school where the lacrosse camp was held.

Reader, can you imagine growing up here? Sometimes I just can't believe that my children can say that they have, that they're actually from this beautiful place.

Sophie was in fine form all day, quite different from how she's been over the last couple of months. We were able to get a higher ratio Charlotte's Web, and while I don't want to jinx it, I think it's doing the trick. She did break out into raucous laughter a few times today which I suspect were a type seizure called gelastic, but she seemed very present, and her face didn't have that rictus grin of the gelastic seizure, so perhaps she actually found something very funny.

Who the heck knows?

Looking north toward Malibu:

The waves were easily six feet tall at points, and the riptides were evidently dangerous as those dreamy
red-shorted southern California beach guards were on alert the whole time. Oliver and Mac literally played for hours in the water while Sophie and I wandered up and down at the edge.

I hope your weekend was as glorious as mine. School will be in full swing starting tomorrow, and I have lots of work to do -- both paid and the usual hausfrau stuff. I want to finish the Anthony Doerr novel that I've been reading and finish up listening to the Elizabeth Gilbert one. I've also got several New Yorkers to catch up on and a host of blogs. All of it makes me happy.

A good friend sent me the following link about trolls and angry internet comments. I found it perfectly relevant to the kerfuffle here at a moon, worn as if it had been a shell. It's an interesting discussion about how communication is evolving with technology and is worthy of even more discussion.

Furious trolls are everywhere -- Even Internet Moms are angry and they hate you

Sparing the Rod, Not Spoiling the Child, Getting Rich***

We have a dog and her name is Valentine. She was named Valentine after the patron saint of epilepsy, and she was supposed to be a therapy dog for Sophie but is now just a regular old family dog. She is a Standard Poodle and is as goofy and chirpy and bouncy in this, her eleventh year, as she was when we got her at seven months. Feeding her daily and giving her fresh water is the responsibility of The Brothers, and years ago when they were still Young Lads, when they bickered too much about who had done it yesterday, etc., I instituted a system of odd and even days. Since Oliver was born on an even day and Henry an odd one, it works out beautifully (except, of course, for the occasional months with 31 days), and you'd think that would be all taken care of, right?


The Brothers, no longer Young Lads, don't feed the dog unless I remind them, and this is really getting on my nerves. That photo was taken when I realized that the dog dishes were dry and empty at 10:00 at night, so out of pity and responsibility for this creature in our home, I fed her and then spared the rod but didn't spoil the child.

The new rule is this:

Every day that goes by that I have to either remind you to feed Valentine on your day or you forget, I get $1. I will collect this money at the end of each week. We're starting today. You each owe me $1.

***The getting rich part involves another rule whereby I collect $5 if I hear a curse word (other than if one is seriously injured with blood spurting or bones sticking through clothing or one is talking to an insurance company clerk) or see any rude hand and finger gestures (other than those directed in service to #don'tstarepaparazzi). We part time working, stay at home mothers and caregivers have creative ways to make money while we polish our toenails and eat bonbons on pink linen sheets.

Saturday, August 23, 2014

Silenced Women, Books and Poetry

via The New York Times

I've been listening to Elizabeth Gilbert's novel The Signature of All Things on the recommendation of our dear Mary. To be honest, I was not a big fan of Eat, Pray, Love but have always admired Gilbert's writing and speaking, her take on life and her gentle demeanor (I saw her once, live, with Annie LaMott). Her new book is read by Juliet Stevenson, the great English actress, and perhaps part of the love affair I'm having with the story and the writing is due to Stevenson's exquisite interpretation. I think, though, that the book is just plain interesting and beautifully written. I generally take forever to listen to an audible version of a book -- I have a hard time staying with the story and don't think my ears are as connected to literature as my eyes, if that makes sense. In any case, though, I'm getting toward the end, unable to listen to it in my car because of some lurid details that I don't want the boys to hear, and I might even lie on my bed and finish it up -- just lie there and stare at the ceiling with earplugs in my ear. 

I'm struck, over the last few days, as I immerse myself in listening to this story of a late eighteenth, early nineteenth century woman by just how constrained women's lives were for most of written history. The constraints were so pervasive and affected every aspect of their lives, including sexuality -- maybe especially sexuality -- until very recently. And then I think about how women are shamed and silenced even today, sometimes spectacularly but more usually, silently and subtly -- even by themselves. I can honestly say that I've felt stifled over the last couple of days, perhaps over-aware of my opinions, my outspoken-ness, my sharp tongue. I wonder if men feel this way regularly, whether they feel the need to second-guess their intentions, apologize for the way they deliver their thoughts or feel "less than" because of them.

Although I can't begin to fully understand it, I think Emily Dickinson was hinting at these things -- at anger and constraint -- when she wrote this poem.

Here's the poem for your eyes:

My Life had stood - a Loaded Gun -
In Corners - till a Day
The Owner passed - identified -
And carried Me away -

And now We roam in Sovereign Woods -
And now We hunt the Doe -
And every time I speak for Him -
The Mountains straight reply -

And do I smile, such cordial light
Upon the Valley glow -
It is as a Vesuvian face
Had let its pleasure through -

And when at Night - Our good Day done -
I guard My Master's Head -
'Tis better than the Eider-Duck's
Deep Pillow - to have shared -

To foe of His - I'm deadly foe -
None stir the second time -
On whom I lay a Yellow Eye -
Or an emphatic Thumb -

Though I than He - may longer live
He longer must - than I -
For I have but the power to kill,
Without--the power to die--

And here's the poem, read by Juliet Stevenson (!) for your ears:

Emily Dickinson - My Life Had Stood A Loaded Gun by poetictouch

Seahorse Days of August

August 2010

I can sit in the cheap garden chair, coffee in a yellow cup on the arm and the small fountain that Oliver built gurgling beside me, reading. I hear the yips of the neighbor's dog, lift my head to wonder from where the constant hum of a chain-saw comes, notice my irritation and notice it drift away.

If we wish to live well in the world, not just amble along through life without any examination of our being, then we must engage in the effort to find meaning in our lives. In order to do this, we have to find a way to balance our own interiority with an empathic recognition of others. Without this balance, we can become invested in our needs and performance while forgetting that there are others in the animal, vegetable, and mineral world. Or we can become so outwardly directed, perhaps even to the point of interfering, as to fail to see our own shortcomings. We must ask: for whom do we practice? We see the paradox of self in the world, focusing inwardly in order to manifest outwardly. The inward look is the outward view. Ultimately we practice for others as our inward polishing manifests itself as good action in our activities.

-from Following the Way of Ryokan in the Fall 2014 issue of Tricycle Magazine

There is goodness and gratitude everywhere. Yesterday, as I made my way through the day, caring for my children and worrying about Sophie, I thought much, probably too much, about the criticism thrown at me. I tried to give it space, to open myself up not to the words, the venom in the words,  but to my own reaction to the words. That takes away the sting in the same way that breathing through physical pain lessens its impact, if not the pain itself. Does that make sense? Last night, this post, one that I wrote in response to overwhelming generosity afforded me in the midst of that person's horrific pain, appeared on my Facebook feed. I will take this as a sign of grace and am stunned, again, by the wonder of the world and this community.

Friday, August 22, 2014

Simmah Down!

My brother-in-law, a native Tennessean, used to shush his young sons up with a very loud, goodnatured, Simmah DOWN!, and that's what I think I'm going to have to say right here on the old blog.


I'm including myself in that admonition, too. I'm going to lay to rest the posts that provoked so much personal attack, even as the anonymous commenter told us her name in "self-defense." Thank you, Elise. I don't want to disable anonymous posts because I agree with another anonymous poster that privacy can be an issue, and I want to respect that. I also don't want to discourage people who disagree with me, and there have been many such back and forths over the years that are stimulating and interesting. I believe Elise has missed those and dwells, probably, on those that discuss G.W. Bush's nasty smile. I hope the back and forth continues and don't want to discourage it by disabling the anonymous function. I think where I draw the line is when someone directs comments at me, my husband or one of my children, because let's face it -- that sort of thing is creepy.

This is, after all, a blog. 

As for Facebook, I've removed the Networked Blogs thingamajig, but I love seeing what my old friends are up to, enjoy the various interesting articles and humor stuff that is posted, and most importantly have a pretty incredible community of fellow epilepsy families that I just can't be connected to anywhere else.

So, onward.

What are ya'll doing today?

Thursday, August 21, 2014


It's deeply repellent to me to have gotten a couple of nasty anonymous comments when I tried to express my vague feelings of conflict regarding the ALS ice-bucket challenge, and I am close enough to the disease to not want to become ever more embroiled, so I'm going to delete the posts and exit from Facebook as well. It's also repellent that the posts have driven an enormous amount of traffic to my blog -- way more than usual -- and I don't want to be a part of that, either. In fact, I'm no longer going to have that weird Networked Blogs thing post my blog to Facebook -- if people want to find me, they will, and if I have a message regarding something related to disability, epilepsy or medical marijuana I can easily link it myself. I wish I could delete my entire Facebook account, but there's so much good going on there in the medical marijuana community that I hate to do it. I'm thinking that maybe I should just make it dormant or something for a while? Does anyone know how to do that?

In the meantime, have I told you how much I dislike cats?

Dear Anonymous,***

Ouch. I guess I had it coming to me. I've never been one to mince words, as you know, and I'll acknowledge that I do a fair amount of complaining. I have much for which to be grateful, though, far more than I have to complain about, and I'm sure I could do a better job of writing about the good things, the things for which I'm grateful, those things that have been afforded to me by family, by friends, by strangers, by grace. Thank you for the reminder, however harsh your words.

Character assassination and your anonymity aside, thank you, too, for reminding me that Sophie is still alive. As long as she is, and most definitely even after she is not, I will continue to complain about, fight against and try to illuminate the very real problems and suffering that those of us on the front-lines of epilepsy and other diseases face daily. There is no martyrdom in suffering silently when problems can be faced, tackled and solved, and if my voice is a tad louder and at best, more articulate, than others, I feel grateful to serve in that way. 

I'm not sure why you're so angry, and I appreciate anger except when it's used to attack people personally. I figure that's why you've chosen to remain Anonymous. If you have it in you, I urge you to read some of the comments on the previous post -- they are both in agreement and dissent with my own, from parents, writers, doctors and even the "normal" people that you claim I disdain. For the record, I don't believe that there is such a thing as a "normal" life, but I acknowledge my sharp tongue and ready condescension for certain points of view. 

All the best to you,


***Anonymous' comment on my last post felt like getting smacked right on top of the head with a two-by-four. I think when things bother us, we need to look within and acknowledge why, wonder and acknowledge any truth to their comments, think about it, and then move on. I hope I can move on.

On Being a Pariah On Facebook and the Ice-Bucket Challenge

At this point, if you don't know about the ice-bucket challenge that is circulating on social media, you are either living under the proverbial rock or you're just very, very lucky. I was "challenged" quite early on and declined to dump the water over my head, not because I'm afraid to get cold or because I'm a hater or a spoiler, but because there was something about the whole thing that got on my nerves. I wondered if it was my own ego getting in the way of having fun along with millions of other people, many of them my own friends and family, including my sons. I wondered if it was jealousy, because I've been trying to raise money and awareness for epilepsy causes for the last two decades and, most recently, for medical marijuana. I figured it might have to do with my general dislike and growing mistrust of the non-profit world, its ties to pharmaceutical companies, the vast amounts of money being exchanged with ever dwindling amounts directed toward real research and cure. I wondered if it was just my own crotchety contrariness. Maybe it was all of those things or none of them, just that weird instinctual feeling that I am hard-pressed to articulate.

In any case, I watched a few of the videos, pretended to enjoy a few more and then quit clicking. Then I read this, posted by a friend, a survivor of breast cancer and, evidently, a fellow ice-bucket challenge pariah. It's a statement by the Breast Cancer Action Group who has also admirably argued against the whole pink ribbon campaign, arguing that the vast marketing machine that these "campaigns" fuel works against research and cure.

We are approaching illness and healthcare assbackwards if we continue to determine which diseases get critical research and support dollars based on the appeal and fun factor of their fundraising campaigns! This is a mad way to confront illness and disease. In this new world of philanthropy by popularity contest, the future looks very scary. Only diseases lucky enough to be the beneficiary of a viral, “fun” campaign will capture public attention and funding. Savvy marketing, motivated self-starters, random acts of kindness will determine who gives a toss about people dying and the disease or illness they are dying from.This haphazard approach to healthcare and research funding isn’t the solution. No single life-threatening illness is more deserving than another. But all this wonderful generosity from a caring public willing to embrace the cause of the day serves as another nail in the coffin of a different kind of solution to illness, disease and ill-health—a solution that requires government funds, public money not private giving, that ensures people everywhere are able to access quality healthcare; that makes decisions about the allocation of research dollars based not on cyclical fads or randomly successful, social media campaigns but on evidence-based needs and outcomes.The #IceBucketChallenge is well-intentioned and has raised a lot of money for the ALS Association. But this disease-by-disease popularity contest approach to funding research is not a sustainable way to confront illness and disease and pushes responsibility for public health onto the private sector. This takes us in the wrong direction. We all deserve better.

Thank you, Yvonne, for turning me on to this, for helping me to figure out just why I couldn't do the "challenge" and for educating me about breast cancer and efforts to treat and cure it.

You know, some people are going to read this and think, at best, that I am a Debbie Downer and very short-sighted. At worst, they'll think I'm arrogant and just putting people down that choose to do the challenge. Even my sons gave me a hard time. But that's ok. I get it -- I get both points of view.

For the record, I made a donation to ALS, a horrific disease that has claimed the lives of several people I know and love. I sure hope they figure out how to cure it soon, and I hope we as a culture and a country can move toward more communal values -- maybe more lasting and comprehensive than filming ourselves dumping ice-water over our heads or buying pink Kitchen-Aid mixers.

Wednesday, August 20, 2014

Wink, #2

We shelter in ourselves an angel
whom we constantly shock.

Jean Cocteau

Those who restrain desire do so
because theirs is weak enough
to be restrained.

William Blake

At the doughnut shop, I waited in line to buy a sesame bagel, toasted, with cream cheese, bacon and tomato.

A woman in an arm brace, the kind used for carpal tunnel syndrome, sat at a small table with an autistic man. He ate a powdered donut with jelly oozing out, and she played with three figs on a napkin.

The young man in front of me had a tattoo on his arm that read I Do The Wrong Things For The Right Reasons.

I might begin a How We Do It post with these lines that I heard Lorrie Moore say that night I went to hear her read:

How can it be described? How can any of it be described?
The trip and the story of the trip are always two different things.

Narrow Borderlines

Of all people, it was seeing former President GW Bush's smug mug on Facebook this morning, getting ready to dump a bucket of ice water on his head that prompted me to want to write something on this blog that I believe has been languishing for days due to my relatively comatose consciousness. I happened to see that smug mug right after I'd read the headline (cause that's all I can handle at this point) about the journalist who was beheaded by the militants in Syria, and the grotesquerie of it all just struck me, right then and there. I might be only expressing the biased and simple thoughts of a certain tribe (because aren't we all tribal, after all?), but there's something incredibly ludicrous about that man -- our former President -- smiling his nasty smile as he sits in front of his family fortress, his head intact, across the world from a country that you could arguably say he helped to de-stabilize with his disastrous war thirteen years ago. Now I don't think the black-hooded figure looming over the American journalist dressed in an orange robe is anything but a vile human being who we can only hope will be judged in some way at some point commensurate with his crimes, but I'll be damned if I'm not going to think any other than madness, too, at that video of that man getting ready to dump ice water over his head.

Moving on.

This quote intrigues me:

The most fascinating and perhaps most significant of all interfaces is the one that separates yet connects the ridiculous and the sublime. The surprisingly narrow borderline between things holy and things profane, between prayer and laughter, between a Leonardo chalice and Warhol soup can, between the Clear Light and the joke, provides a zone of meaning as exhilarating as it is heretical: a whisper of psychic release so acutely yet weirdly portentous it just might offer a clue to the mystery of being.
--Tom Robbins, from Now Showing: Satori 

Read the whole article -- it's short and sweet and so perfectly helps me to realize why I was so struck by the head of G.W. Bush today, engaged in innocent activity, and by the head of that innocent journalist, severed from his body. Perhaps my claiming that all is vanity, that it's all madness and insanity is defensive, a way to protect myself from the horror, the horror. Or maybe it's just another path to satori or understanding. I have no idea.

Monday, August 18, 2014

First Day of School Traditions

As evidenced by the late hour that this post is going up, I've got nothing for you today. I've got nothing for me today, either, to tell you the truth. It was Henry's first day back to school, and I was the carpool driver, so I picked up two Cookies and Cream milkshakes for him and his friend. They were a welcome sight in the 90 degree plus San Fernando Valley heat, and it's that sort of thoughtful gesture that I believe makes me a good enough mother. Sometimes, we have to pat ourselves on the back, don't we?

No need to respond. These are, after all, the dog days of August.

Sunday, August 17, 2014


The other day I unearthed a box that was underneath my bed -- yes, it was buried under my bed, covered in dust. My father had sent it to me some years ago, and I don't think I had ever opened it or really looked at the contents. I unfolded my white eyelet high school graduation dress from 1981, my cream-colored (perhaps it was once white) First Holy Communion dress from 1970, a white pinafore that I believe I wore as part of my Dorothy costume from my starring role in the school play in fourth grade, 1972, my Brownie uniform, my Girl Scout uniform and the above accessories. Other than a surreal horror at how tiny , truly tiny I was, not just in second and fourth grades but in my last year of high school (honestly, I swear that I could no more pull that thing over my THIGH much less pull it over my breasts and shoulders and zip it up), I was cast back into intense nostalgia for childhood. On throw-back Thursday last week, I posted a photo of myself from sometime in the late 1980s on Facebook, and more than a hundred people "liked" it. Comments included many exclamations of wonder -- Wow! -- which inevitably made me think have I changed that much? As evidenced by that tiny white dress, well, yes. But when I peer closely at the photo, looking for the me that is myself, I see her, despite the superficial changes. I've mused with girlfriends about unsnarling our identities from our children as we and they age -- how difficult it is to figure out and find, reclaim that me that was before the me that is today. Sometimes it takes peering into photos to find ourselves, not so much to remind ourselves of that youthful beauty but to remind ourselves that life, while transformative, has not irrevocably changed who we are in the most essential sense. I do this with photos of my children, too -- flipping through photo books that I lovingly made when they were babies and toddlers, scrolling through the thousands I have stored on my computer -- Sophie, Henry, Oliver are still there, in the eyes, in the smiles, in the people they've become.

But what do we do with all this stuff? Do I dry-clean the dresses and uniforms, go to The Container Store and buy that preservation tissue and boxes in which to place it lovingly for my progeny? It's hard to imagine either Henry or Oliver will take along this box, open it and feel anything, really, about it other than oh, god, more of Mom's crap. And even though it seems as if all things eventually go there, I am struck by the fact that Sophie, my only daughter, the obvious person to receive these things, will obviously have no need for them or awareness of their "value," if she even lives longer than me. After all, despite the fact that I've saved many bits and pieces of her own life -- darling baby clothes, my favorite of her many beautiful shoes and outfits that I splurged on over the years, some of her "artwork" from early years in preschool and kindergarten when I had no idea how things would turn out -- they really please and mean nothing to anybody but me. Perhaps there's a lesson in that, but I'm not sure. I won't throw any of it right now, though, heavy as it is, invested still with emotion and longing and reminders.

Saturday, August 16, 2014


Thanks to a homeschooling mentor of mine, I have been reading and re-reading this incredible article about children and education. The title is A Thousand Rivers: What the modern world has forgotten about children and learning.  As I gear up to do what may be a complete "school year" at home with Oliver, I feel periodically panicked and instinctively confident. My friend sent the article more than a week ago, but I opened it tonight, during a less than instinctively confident moment. I took a deep breath as I read, not so much because it confirms what I feel, instinctively, but because it's written so beautifully and is particularly persuasive. It makes sense. It deals with the madness. As my friends send their children off to four-year colleges, after a frantic year of freaking out about the process, as my own son gets ready for another grueling year in a typical Catholic high school (that he very much wants to stay in, despite my own reservations,) as Sophie is so very much "left behind" in her local public high school, I am relieved to be following my instincts -- and, most importantly, Oliver's, for another year.

Here's an excerpt from the article:

We have radically altered our own evolved species behavior by segregating children artificially in same-age peer groups instead of mixed-age communities, by compelling them to be indoors and sedentary for most of the day, by asking them to learn from text-based artificial materials instead of contextualized real-world activities, by dictating arbitrary timetables for learning rather than following the unfolding of a child’s developmental readiness. Common sense should tell us that all of this will have complex and unpredictable results. In fact, it does. While some children seem able to function in this completely artificial environment, really significant numbers of them cannot. Around the world, every day, millions and millions and millions of normal bright healthy children are labelled as failures in ways that damage them for life. And increasingly, those who cannot adapt to the artificial environment of school are diagnosed as brain-disordered and drugged. 

Here's a clip from a documentary which is having screenings all over the world:

Schooling The World: The White Man's Last Burden trailer HD from lost people films on Vimeo.

Friday, August 15, 2014

White-knuckling it

Help me, Rhonda.

Colors are the wounds of light

William Blake

I must have had a difficult dream life last night as I slept, because I woke feeling bruised and worn, hot behind the eyes. I woke just before dawn when it was still dark, watched the sun come up through the blinds on the door. Yesterday, I bought myself some tiny pink roses and put them in a vase and put the vase on my bedroom dresser. Under the vase, I put a white piece of notepaper on which was written the names and numbers of the people at Sophie's school who are supposed to be helping us. So much of my energy is directed toward the hostile, toward difficulty. I thought I'd let the colors do the work.

Does that make sense?

Thursday, August 14, 2014

Riding in the Car with Boys and Other Stuff

to Elizabeth L.

This morning I had an exhaustive conversation with several LAUSD worker bees because despite it being only the third day of the 2014-2015 school year, and the sixth year that Sophelia Bedelia has attended this school and therefore the sixth year that she has ridden the bus in the afternoons, there are problems. I've told you before that we refer to the Special Education Department of the LAUSD as                                        D O W N T O W N because for as long as I've known it (which is going on seventeen years!), whenever there are problems, anyone who works for the LAUSD blames it on  D O W N T O W N.

Like today. Apparently, DOWNTOWN has eliminated the position of SPED coordinator at our school because -- well -- who knows why? We had a rather nice and efficient coordinator last year, a welcome replacement for the retired Wicked Witch of the West, but I guess it was asking too much to see some continuity. I believe he has been shuffled back to another classroom and a new person is temporarily in the school office, but she obviously had never heard of Sophie nor did she know anything about her IEP, the wheelchair bus request which is in the IEP and the fact that the aide assigned to ride the bus with her was also assigned to ride with another kid who is apparently quite a handful. I'm not going to belabor this clusterf**k and tell you everything that has transpired because it's boring and very first worldish, but I kept Sophie home from school today so that the new bee could figure out the problem, and after the telephone call I felt overwhelmed and crazy again because remember: It's the small stuff that is going to kill me. I calmed myself down by imagining a trip to D O W N T O W N where I imagine I'd find some nasty little man behind a curtain, sort of like Oz.

Anywoo. Let's move on to riding in the car with boys.

Today's conversation and arguments revolved around Burpsnarts. The Brothers were actually arguing over Burpsnarts, which they explained are when you burp, sneeze and fart all at once. I repeat that they were having a conversation and actually arguing about this, and while it didn't come to blows, I fantasized a bit about slowing down and jumping out. Because I am a responsible woman, though, I refrained from it and in my mind thought about dining out with James Joyce and Nora and then getting on a private plane with my friend Elizabeth and moving to Bora Bora.

Helping Hands Needed

A reader sent me a lovely email about this blog and about the community that has grown up around it. She is a mother of two children, one a young girl with Down Syndrome and the other a teenager with significant and crippling anxiety and depression. I asked her permission to post her question here, because I just have a feeling that someone out there reading might be able to help her. If you can answer, please leave a comment or email me your contact information. If you yourself write about these issues, please let us know! My email is elsophieATgmailDOTcom.

Do you know of any blogs written by moms, or dads, of teens with major depression/anxiety?   I've been looking for a really insightful one, with really good writing. 

Thank you so much. 

Wednesday, August 13, 2014

Dandelion Wishes

I was washing the crepe pan in the sink, the water was running and I thought I heard a thump so I turned the water off and walked to Sophie's room. Hearts beat fast immediately. They remember. Tonight, though, there was no body on the floor, no blood pooling, no girl on all fours, struggling to get up. Sophie stood at the door, her curls more a  dandelion of wishes yet blown than halo. She walked back toward her bed and sat down. I stood at the door and said, Hey there. I'm just washing up the dishes. Wanna come inside with me? She kind of looked at me and then away, but for a moment, I could imagine her reply, could almost hear it.

Cannabis Oil Questions Answered #3

How does Sophie take Charlotte's Web, and how much does it cost?

A lot of people don't realize that Charlotte's Web is a tincture with an olive-oil base and that it's easily drawn up in a small syringe and placed in the mouth. It tastes like olive oil with a faintly bitter tint, but I'm what you call a super-taster, so I imagine Sophie doesn't taste much of anything. The doctor recommends that it be given with either avocado or full-fat yogurt, but we don't always do this, either, as it's given three times a day, apart from Sophie's other medications. She gets it in the early morning, in the afternoon when she gets home from school and then around 10:00 at night. For the last dose, she's usually sleeping, but we're able to get it in her mouth without waking her up, and I've perfected the art, even, of getting her to swallow by rubbing her throat lightly or the sides of her face. I know that people give the medication through G-tubes, too.

As for cost, currently we pay $.05 per mg. I am averaging about $300 for a one-month supply. I know that's a lot of money, but to put it in perspective, I currently pay nearly $200 in co-pays for Sophie's medications, not counting the pharmacy deductible, and that's with private insurance and secondary Medi-Cal. Some of you long-time readers know that my co-pay for Onfi was nearly $500 a month until I got it from Canada for $61 and then found a non-profit foundation that picked up the co-pay. When we finally shed our abysmal Anthem Blue Cross policy and added Sophie to our Health Net plan (thank you, Affordable Care Act), we had to pay a slightly higher deductible, but they added Onfi to the formulary and picked up a greater portion of the Onfi cost (still hefty at $70). I pay $100 co-pay for the Vimpat. And we can't forget that those drugs do nothing for Sophie's seizure disorder, have horrible side effects and are a hellacious pain to wean.

I think I've said it before, but there's not much that I wouldn't do to come up with the money to pay for Charlotte's Web, given that it has cut Sophie's seizures down by more than 95%. You can go with that where you will.


Other Cannabis Oil Questions Answered:

# One
# Two

Tuesday, August 12, 2014

Urban Observations and Musings on Mindfulness and Disappearance

I left the CVS last night at dusk and on the way out listened to a woman, on her way in, lamenting the death of Robin Williams. It took a moment for me to realize that she was not all in her right mind, as they say, because she was asking questions of no one in particular. Robin Williams is dead? Was it a suicide or did his wife kill him? For not doing the diapers? I made tentative eye contact with her, and she asked Do you want to change dirty diapers?

As I walked home, I realized that in my purse I carried nearly $1,000 of a powerful narcotic but that I was hardly the richer for it. I also carried a $12 razor and $20 razor blades for my older son. Narcotics and razor blades nestled in a brown leather purse.

Today I took Sophie to her every three month or so neurology appointment. While I really like and admire The Neurologist, have I told you how much I hate my life when I have to go to hospitals and appointments with Sophie? You'd think at this point that I'd be sort of numb to it all, but I'm not. At the very least, my mindfulness practice enables me to identify that the physical nausea, elevated heartbeat, stifled whimpers that would so much like to eke out of my mouth, and pinprick of tears behind my eyeballs are all just -- there. I can just acknowledge them as visitors, in a way, not suppress them or hate them or indulge them. It's very precise work, though, to do that -- one of those tightrope walks that I've told ya'll about. I have no idea why I have this problem, if you can call it that. At worst, I fantasize about various ways I could disappear -- not so much suicidal thoughts or death wishes but just an end to it all.

Those legs in that photo belong to three women who were in the waiting room in the neurology department this morning. Directly behind them is a sign on the wall in large letters, spelling out the word:


Whenever we go to see The Neurologist, I stare at that word and the plaques below it, memorializing the generosity of various people who, I guess, have helped to conquer neurological disease. I rarely feel gratitude when I look on this but rather am reminded, again, of how much I hate the medical world and, particularly, war imagery. Don't get me wrong, I'm grateful that I'm not waiting to see a doctor in Africa -- let's say -- where the walls and floors are speckled and splattered with Ebola-infected blood. The world is vast and cruel, my own issues and problems dwarfed. I just hate the idea of conquest and warriors and all that lingo. I make myself laugh by thinking it should read:


or maybe:

H O L Y  S H I T

I recognized a kindred spirit in one of those three ladies attached to the legs in the photo. She was an old woman, flanked by another old woman who was her sister and a middle-aged woman who was her daughter. I know these things because the three of them spoke loudly throughout our wait to see The Neurologist. The kindred spirit woman was the one who had some sort of problem, and while her daughter and sister were relentlessly cheerful in the manner of those who aren't sick, she said at some point or another that rather than have the test, which I think was a spinal puncture, she wanted to just go ahead and die. The middle-aged daughter remarked that her mother was so negative, and the sister, who was markedly thinner and sported a bouffant hairdo and make-up, opened her mouth in a sort of gasp and declared, Well, then, who is going to take care of me when I am older? I sort of wanted to get up and go over to the sick one and put my hand on her shoulder, tell the other two to knock off the positive shit and then say, Let's get the hell out of here, but just about then, the male nurse called out Sophie's name so I got up and reluctantly walked away. I did hear my kindred spirit tell her sister testily that she did have two daughters to help her out, but the sister said, It's not the same thing, and you need to cooperate and have a better attitude and then I was out of range, on my way in to juggling Sophie while the nurse tried to get her blood pressure and to walking her up and down the bland hallways waiting for The Neurologist to appear. 

I confess that the fantasizing happened in the parking lot, after the appointment, when I forgot where my car was parked, an occurrence that happens so regularly as to belie my otherwise formidable memory. Again, mindfulness practice helps, but oh, to disappear.


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