Tuesday, July 28, 2015


That's the shell out of which I shook an almost fetus-like blob of gray slime a couple of weeks ago in my cottage at Hedgebrook. Slurp, it slid out. Now it sounds like the sea. It's a perfect breast and it's a shell. What is that whorl called at the tip? Are there names for such beauty? If you lift it up, the edge curls over, a ledge, hard, smooth and shiny, tinted pink that disappears in a curve. My finger strains to feel up and inside the darkness on the underside of the whorl. I am certain no one has seen inside.

That's my first copy of To the Lighthouse, and it's filled with tiny margin notes, written by me and a boy I loved. I've underlined this.

To want and not to have, sent all up her a body a hardness, a hollowness, a strain. And then to want and not to have - to want and want - how that wrung the heart, and wrung it again and again!

Monday, July 27, 2015

Cops and Firemen

It's pretty quiet round these parts with The Brothers on the east coast. I'm catching up with things, organizing, putting the old life in order, drinking vodka drinks, hanging with The Soph. I've got the first draft of MGDB and need to find an agent. Tips? Leads? Extra girds for the loins? I've got a meeting tonight at the neighborhood police station -- an orientation for parents of kids who want to be auxiliary police. Guess who? Big, big sigh with a slow, heavily accented good lord.  I'm trying to persuade him that cops while necessary and often wonderful are -- well -- cops. They carry all that shit on their belts, have clubs and tasers and bad haircuts and mirrored sunglasses and wear black leather boots that come up to their knees. How about firemen? is what I ask in my most gently persuasive tone. Tearful, if you're reading, please chant for The Big O and his mother.

I was going to write a Saturday three-line movie review of Amy, the documentary about Amy Winehouse, but I didn't get around to it. Here's a three word review:

Go see it.

Sunday, July 26, 2015


The more I think about Sophie's behavior, seizures and involuntary muscle contractions, the more I believe them to be symptoms of benzo withdrawal.  I've invested the process of removing this drug from her body with all the fuckeduppery of The Whole Business. I feel stripped of trust in anyone or anything.

I also fight off feelings of despair that this will ever be over. Benzo withdrawal syndrome can persist for years, even after the drug is weaned completely. I've always hated war imagery when describing illness. Her battle with epilepsy. His warrior spirit in the face of cancer. Etc. Actually, as long as I "fight" the feeling of despair, it increases. Instead, I allow it to wash over me, acknowledge it, bathe in it, open my eyes even as I'm in over my head. It goes away, then, leaves me dry and again, stripped.

I'm suspicious of the "mental illness" excuse that people of all persuasions trot out every time a man uses a gun to mow down innocent people. I'm not talking about gun control, either. I think the mental illness trope masks something deeper and more rotten that has everything to do with a culture that has always glorified violence, that is deeply paranoid and most of all, intellectually lazy. Does that sound pretentious? It's certainly not original, but it's what I'm squirming about today.

Here's a poem:

In the Library

There’s a book called
A Dictionary of Angels.
No one had opened it in fifty years,
I know, because when I did,
The covers creaked, the pages
Crumbled. There I discovered

The angels were once as plentiful
As species of flies.
The sky at dusk
Used to be thick with them.
You had to wave both arms
Just to keep them away.

Now the sun is shining
Through the tall windows.
The library is a quiet place.
Angels and gods huddled
In dark unopened books.
The great secret lies
On some shelf Miss Jones
Passes every day on her rounds.

She’s very tall, so she keeps
Her head tipped as if listening.
The books are whispering.
I hear nothing, but she does.

Charles Simic

Saturday, July 25, 2015

Happy Birthday, Henry!

Henry, light of my life, you're 17 years old today!

From the moment you were born, you brought nothing but an infectious joy to the world. It's an honor to be your mama, and I'm proud of the young man you've become.

I love you.

Friday, July 24, 2015

Things That Amuse Me, Part 567

from Monty Python and the Holy Grail


very well-respected neurology periodicals like the current Epilepsia with articles like the following:

Controversies in Epilepsy

Dietary therapy is the best option for refractory nonsurgical epilepsy
Elizabeth A. Felton and Mackenzie C. Cervenka
Article first published online: 22 JUL 2015 | DOI: 10.1111/epi.13075
Abstract | Full Article (HTML) | Enhanced Article (HTML) | PDF(118K)

Dietary therapy is not the best option for refractory nonsurgical epilepsy
MarĂ­a Magdalena Vaccarezza and Walter Horacio Silva
Article first published online: 22 JUL 2015 | DOI: 10.1111/epi.13074
Abstract | Full Article (HTML) | Enhanced Article (HTML) | PDF(127K)

Where You Are

Sculpture Garden, Norton Simon Museum 

I've got a whole month of Sophie days ahead -- no school and no Communicamp this year. It's hard thinking up things to do with her, and there's some rigamarole involved given the stuff I have to schlep. I'm not complaining, but if I were a man I'd do some mansplaining. There are definitely days when I'd rather let her roam around her room, picking up toys to mouth, aimlessly, but those days leave me feeling not so much guilty, but rather inadequate. I know she needs attention and stimulation, but I don't feel like doing it. You don't need to assure me that I'm a good mother and couldn't possibly be with her constantly. You don't need to tell me that no one could possibly do that and do it for twenty years. I know these things. I just feel a bit querulous, and my sense of humor is elusive in the face of -- how do I say it -- the perpetuity of it all. I have this theory about our cellular/genetic makeup -- how as mothers we're made to withstand things like babies screaming for hours and pooping their pants for years, or needing to bathe and feed and entertain them, even when it's boring. Our wiring is beautiful in that we are able to do these things, sometimes very well and sometimes not so well, because we also know, on some deep cellular/genetic level that it isn't forever. Colicky babies eventually stop crying. Every baby eventually sleeps through the night. Toddlers get potty-trained, learn how to talk and eventually play by themselves. Ultimately, if all goes well, they leave you for their own lives.
The thing about caring for a severely disabled child is that the whole paradigm shifts -- we aren't so much wired to endure the necessary level of caregiving but have to figure out how to endure it for -- well -- ever. And no, it might not be forever, literally. Some of us fear that our children will die sooner rather than later. We also fear that they'll die later rather than sooner. Not a day goes by that I don't feel grateful for the time I do have with Sophie. I am skilled at holding paradox -- despair and delight -- cursed and blessed -- gravity and humor.


At Hedgebrook I had the opportunity to share a bit of my writing with the other residents, and after reading a chapter about the early days of caring for Sophie -- the immense crisis, the hell of it all -- the writer asked for my feelings, for me in the events. Surely you felt something, she asserted, a writer needs to show those feelings, and I felt the tiniest bit defensive. I've been thinking a lot about that feedback and questioning over the last several weeks. I don't articulate myself during crisis, nor do I identify every feeling as it occurs. I am, rather, in it, doing it. When I write it I want that to be conveyed -- not so much the necessary dissociation that occurs but the attention to the present moment that leaves no room for analysis. Lorrie Moore wrote in her story "People Like That Are the Only People Here:"

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.

 The trip and the story of the trip are always two different things. I'm trying to tie these things together -- the love and the loathing -- the present and the perpetuity -- the trip and the story of the trip -- and convey what it means on a cellular level, when all paradigms have shifted.

I've lost my thread.

I took Sophie to the Norton Simon Museum this afternoon with a friend of mine. I have lived in Los Angeles for eighteen years, yet I'd never been, and it was just fantastic. The museum is very small, but the collection is pretty amazing, and the sculpture garden was gorgeous. My friend and I wandered around and caught up with one another, and Sophie was fairly content, so it turned out to be not just a lovely afternoon but one that assuaged my needling thoughts of inadequacy and caregiver fatigue.

Thursday, July 23, 2015


That's a weird shot, isn't it? I was trying to get a picture of us together when Sophie suddenly head-butt me really hard. It brought tears to my eyes, but it didn't seem to bother her. I suppose she has a high pain threshold what with all the goings on in her brain. My entire scalp is always so sensitive which, Dr. Jin tells me, is too much heat, and now I have a sore spot. Other than that, though, Sophie's had a decent day with no seizures to speak of, fewer tremors and jerks that I believe are withdrawal symptoms. Sometimes I put my hand on her right arm and gently squeeze it, and I swear I can feel an electric pulse running down her arm and into her hand. I wonder if she feels agitated by that, if it drives her crazy, if butting someone's head is a pain that distracts from a greater one.

Wednesday, July 22, 2015

Bird Bath

La Brea Tar Pits

She's much better yesterday and today -- we've added a little THC to her regimen to help with withdrawals.  Four drops a couple of times a day -- we'll see if it helps.

What's going on in the CBD and medical marijuana world continues to be very frustrating. I'm trying not to be cynical about it all, but we might be just like Carl Sagan's "pale, blue dot." Look it up if you haven't seen and heard that.

Wild world.

My friend Terri sent me this video yesterday, and I just love everything about it -- especially those sexy tattooed arms.

Tuesday, July 21, 2015

The Brothers

I don't mean to offend, but in my experience boys are simple. I'm not speaking about intelligence, but I am speaking about complexity. The more boys you put together, the simpler they get. In my experience, it's the opposite with women. Do I make sense? I am a woman, after all.

Ask these brothers the same question, and you'll always get opposite answers. It's a simple prediction, and it doesn't make for complexity.

Simplicity can drive a woman insane.

Good thing they're easy on the eye.

Monday, July 20, 2015

Back in the Saddle and Some Junk Dada

Oliver, Sophie and I went to LACMA today to see the Noah Purifoy exhibit, Junk Dada. Purifoy is a little known African American artist who was one of the founding directors of the Watts Towers Art Center in Los Angeles. After the 1965 Watts rebellion, he helped to create a body of sculpture with charred debris from the fires. His strategy was to use materials at hand and art as a tool for social change. He worked for 20 years after the rebellion, after which he relocated to the Mojave Desert and spent his final 15 years creating large-scale installations out there. I've never been to Joshua Tree to see them, but the three of us found this exhibit of some of his work engrossing and wild.

Here are a few more pictures:

After the museum we ate some Thai food from one of the many food trucks that lie along Wilshire Blvd. It was hot out, and Sophie hasn't been doing too well the last couple of days. She is on the third week of the latest withdrawal of her benzo, so between the heat and that, I think I know why she had so many big seizures. I told a friend that today was the first day since Hedgebrook that I felt back in the saddle. It was inevitable. When we finished eating, Oliver pushed Sophie's wheelchair while I held her arm, and we all crossed Wilshire Blvd to get back to our car. Right in the middle of the intersection, Sophie began to seize, and I literally had to drag her out of the street and up onto the sidewalk. While seizing. A couple of people asked if they could help, but I said, That's ok, we've got it. And we did have it. Oliver balanced his leftover spicy ramen in a container and maneuvered the wheelchair behind Sophie so that I could position her in it, even as I balanced my Thai coffee and felt my sunglasses slipping off my sweaty nose. I had to hold her jerking legs and keep her from slipping out of the chair and into the dank water along the curb, and I'll admit that the three weeks away from It All didn't do anything to assuage my normal back in the saddle feelings of tempered despair. I never get used to it. At some point, as we made our way back across the street, Oliver said, Well that was fun, and he didn't mean it.

Later, I laughed with some of my comrades over a headline and article that appeared on US News and World Report's health page. Epilepsy Is No Longer a Mystery, it said, so at first I thought it was something from The Onion. It wasn't. Good Lord. I left a few words on each of the sites that had posted the article on Facebook, and let's just say I disagreed. I noted that despite the fact that we all get to see photos of Pluto's surface on our laptops, we are still drugging people with epilepsy up the wazoo or removing large chunks of their brains and filling them up with spinal fluid, and my daughter is seizing for the millionth time for no apparent reason in the middle of Wilshire Blvd. 

Epilepsy is still a mystery, and from my position in this damn saddle, I still see a hell of a lot of desolation.

How We All Do It

M using her vaporizer system for MMJ while an inpatient

Back in April, my friend Heather connected me to her friend S, a Canadian mother of a sixteen year old with severe disabilities. Here's the email that S sent me:

Heather gave me your contact information because we are really struggling with our daughter's seizures right now. She is 16 and previously had been seizure free for 2 years!! Now we have been in status Epilepticus twice in a week that requires massive drugs to stop. It's a matter of time before she is intubated and takes her at least 4 days to recover from. I have heard so much about CBD oil and need to try this. Not sure what resistance I will encounter with her neurologist but want to arm myself with information. I was not even sure I could get it in Canada. I am very excited about this option and would appreciate ANY information you could offer.Thank youS

I responded immediately, but because I am Not A Doctor  and have only a tiny, little mother mind,™ God forbid I should give any medical advice. I referred her, instead, to Realm of Caring, to the Facebook groups and to my Canadian friends who use CBD with their families. I also suggested that she watch the CNN series Weed. 

A few days later, S responded:

Thank you! M. is on Vimpat, lacosemide, clobazem(onfi), and now adding phenobarbital that she had an allergic reaction to 15 years ago. They hope she's outgrown it???!!! So many drugs, each one has its own side effects. Our neurologist today told me he will not support CBD oil because he has no proof it works and is not legal here!!!!! So frustrating. I still will pursue this because I have heard such overwhelming real life accounts of its benefit. I am not sure how to join the support groups. When I  click the links I get a page saying I do not have permission to enter the site. I am super excited to be able to hear Canadian stories. Gives me great hope. How do I join those groups?Thank you. S

I'm sure you heard my giant sigh when I read what her neurologist said. It was probably in direct proportion to how the neurology world perceives my tiny, little mother mind™ and the government views the evils of marijuana or Big Pharma anticipates profit, but I got back to S with what I knew about medical marijuana in Canada (that it's NOT illegal) and then referred her again to the Canadian mothers I know who are using it successfully. I'm not sure what happened next, but about a month later, I got this message from S:

Just wanted to give you an update! I took M to a Cannibus clinic against the neurologist and paediatrician!! They were not supportive - the opposite of that really. I begged my family doctor for the referral. She wanted to put M in the Hospice and pull all treatment. I begged for this saying then at least I know I have done everything. Well we started 17 days ago. We have not had one single seizure in 17 days!!!!!!!! So thank you from the bottom of my heart. Your help has given us another chance at life with M!!! She has had some significant brain injury due to the severity and frequency of the seizures. The only way we can move forward and heal is to get a rest from the seizures. We have that now. Hope it is onward and upward from now on!!! Thank you again for your help and advice.

On June 11th, S wrote this:

Day 35!!!!

Unfortunately, this past Friday, S informed me that M had to be admitted to the hospital because her feeding tube site got infected, and S had to then worry about giving the CBD oil in-hospital. Here's what she wrote me:

We are trying to get her medical marijuana approved to use here in Hospital!!!!! Yesterday a resident asked the team and they said yes. I was so excited until we went to use it. That resident never wrote orders for it!!!! So that's my mission today. She has gone 3 days without it. I will be devastated if she had a seizure because she was not allowed to use it!!!! I hope the oils get established and provided here!!! We are here because M's feeding tube site got infected. We brought her in Sunday and they did not believe she was sick! They were so rude and condescending. By Tuesday morning I had to rush her here in septic shock. They believed me that time. So looks like we are here for a while. Hope not too long!!! This place drives me crazy as I am sure you can relate!!!!

I can definitely relate, although my experiences in the hospital with Sophie were, thankfully, years and years ago. Knock wood three times right this second. S and M are far bigger rock stars than Sophie and I!

In any case, S updated me further:

I got the approval!!!! Can't believe they are going to let me do it in the Hospital!!! They say it is a first!! It seemed like a big deal. They had to take it into their possession and lock it up in their narcotic cupboard. Makes me laugh!!! I have enough Midazolem in my diaper bag to drop a horse but the less that 2% THC product that wouldn't affect a fly is confiscated!!!! Oh well, at least I got approval!!!!! I would love to see the look on the neurologists face if he hears about this!!!!!!

I know some of you think I dramatize stuff, that I might spend too much time writing about the negative experiences of our children with special healthcare needs and not enough time with the positive. I am perfectly aware that there are plenty of wonderful doctors and healthcare facilities all over the world, and I'm grateful for all of them. The reason why I highlight a lot of this stuff, though, is because it can be life or death -- literally and figuratively. It's a literal life and death situation for many of our children. Those of us who parent or care for children with severe disabilities and epilepsy in particular die a thousand deaths figuratively when our children seize. We are traumatized by the condition itself and then doubly or triply so when we face bad care or doctors who dismiss our concerns or who fight our decisions, openly, even as they have no hand to deal.

But back to our unfolding story. You're keeping up, right?

On Friday, S sent me this message:

Yes!! M got her medical marijuana tonight in the Hospital. Children's Hospital!! She is sound asleep and peaceful. It is such an amazing and wonderful medicine for her!! Natural healing power!!!

There's both the literal and the figurative saving of lives. 

I was so excited to hear this that I asked S whether I could post a story on the blog about them. This is what S said,

Absolutely!!!! If M's story could help one person or inspire someone that would be wonderful. I think this is an important time for this era of medical marijuana acceptance. It is definitely something that I believe in and has improved the quality of M's life beyond anything else that has been medically offered!!!

So, there you go. Reader, please share M's story.

We're all connected, and this is how we do it.

Saturday, July 18, 2015

Rain on Dead Grass

As Denise says, "People take lots of photos of the rain in Los Angeles."

I left the sunny, warm Pacific Northwest and arrived home to the rainy, humid shitty. That's a photo of our back yard. We've let the grass die and plan on replacing it with drought-tolerant stuff. I'll make a couple dozen cupcakes for you if you design something for me because my creativity just doesn't extend to landscape design. I'm thinking a fire pit, some seating, maybe a meditation garden/labyrinth and a lap pool. Just kidding on the lap pool. The rain is nice, though, and today when I went to Trader Joe's, that's all anyone was talking about. As they stacked the avocados, two guys talked about the awesome thunder we all heard this morning, and pretty much everyone commented on how exciting it is to see water fall from the sky.

I'm finished unpacking and re-entrying. It's going well. I've only raised my voice once and badgered The Brothers over and over when they flew the small drone I had purchased for them outside before they'd gotten skilled at it, like I told them to, and it got stuck up in a tree. They connected about four long poles, broomsticks, lacrosse sticks and flagpoles together with duct tape, along with a citrus picker and managed to get the drone down, but the protective cage is still up in the sycamore. After raising my voice and badgering them, over and over, they informed me that it'll come down, Mom, in the fall.
My three weeks in the Hedgebrook wilderness have evidently changed me, though, because that response was adequate, I shrugged my shoulders and went back inside to read some more.

You know how when I got there it felt like I was hallucinating? After three weeks of solitude, intense writing, dreaming, walking, conversing with amazing women and having nearly every need met by the staff, I might be permanently stoned.

Friday, July 17, 2015


Leaving Whidbey Island

I really can't ride on a ferry without quoting this, a poem by Edna St. Vincent Millay that I memorized in the last millenium:


We were very tired, we were very merry—
We had gone back and forth all night on the ferry.
It was bare and bright, and smelled like a stable—
But we looked into a fire, we leaned across a table,
We lay on a hill-top underneath the moon;
And the whistles kept blowing, and the dawn came soon.

We were very tired, we were very merry—
We had gone back and forth all night on the ferry;
And you ate an apple, and I ate a pear,
From a dozen of each we had bought somewhere;
And the sky went wan, and the wind came cold,
And the sun rose dripping, a bucketful of gold.

We were very tired, we were very merry,
We had gone back and forth all night on the ferry.
We hailed, “Good morrow, mother!” to a shawl-covered head,
And bought a morning paper, which neither of us read;
And she wept, “God bless you!” for the apples and pears,
And we gave her all our money but our subway fares.

I'm baaaaaaaaaaack. 
It was beyond wonderful to see the boys last night, but Sophie was asleep so I went in to her room
this morning and gave her a big hug. She touched and explored my face very solemnly, looking me in the eyes. I told her that she was my inspiration, is my inspiration and that everything I've done and who I've become is due to her.

What are ya'll up to?

Thursday, July 16, 2015

Hedgebrook, Day Twenty-two

Willow Cottage with the only blue door at Hedgebrook

I've said my good-byes and am sitting in Willow Cottage, waiting to be picked up and driven to the shuttle that will take me to the ferry that will take me to Seattle airport that will take me to my plane that will take me to my sons and daughter.

I never did see that owl, but last night a bat flew into the screen window at about 2:00 am while I sat up in bed, reading. At first I thought it was a moth, then realized it was a bat, and then fell to my knees in prayer and thanksgiving that the screen was in place. I suppose there's meaning to be made from not seeing an owl and having a bat encounter instead, but I'll leave that up to you to make of it what you will.

I've girded my loins for re-entry. I'm feeling good.


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