Rain, The Minotour, Mrs. Braddock's Laugh and What's Baked

Raindrops on roses
and echeverria
Dear, dear Jesus
thank you for rain 
and the plumeria.



Do you remember The Efforts To Acquire The Chariot and then Busgate? In a nutshell, it took about eighteen months and some serious Insurance and MediCal wrangling to get a wheelchair for the girl (because, you know, I might have been making up her disabilities and trying to acquire a $10,000 piece of metal for the hell of it), and then too many IEPs and phone calls to LAUSD that brought to mind an episode of Monty Python to get a lift bus for her. Sophie is supposed to have been riding in her chariot on a lift bus for, basically, years, but it wasn't until this week that one mysteriously arrived at her school. I got a call on Tuesday afternoon from her bus aide, Saint Charles, at about 3:30.  The lift is broken, Charles reported, we're going to be late because we're waiting for a mechanic. I threw back my head and laughed, Mrs. Braddock-style (watch this scene, if you don't know what I'm talking about). God, I love that scene. How about her psychedelic shirt, Mr. Braddock's robe, his drink, the half-baked comment -- hmmm, I digress. I told Charles that rather than wait for the LAUSD bus system mechanic (visions in my tiny little mother mind™ of The Man Behind the Curtain in Oz pulling all those levers to get the bus mechanic ), I would drive over to Sophie's school and pick her up myself, so by the time I got there, picked her up and brought her home it was about 4:15ish, and just an hour after she had been dismissed. At 5:30, the telephone rang, and when I picked it up, the Efficient LAUSD Robot said, This is a call from the LAUSD bus system. Your daughter PAUSE Soooophie is on a bus that will be approximately 75 minutes late.

Go back to that link of Mrs. Braddock's fantastic laugh.

Today, the lift bus pulled up while I stood at attention on the sidewalk and then waited as The Busdriver did some kind of maneuvering inside, walked to the front of the bus and then down the stairs and came out. I told her that I didn't think the lift would clear the curb, that she would probably need to back up to the driveway, so she stood and stared a bit and then walked back to the bus, shifted it into reverse and backed it up. The beeping sound emanating from the bus was so loud that I had to cover my ears. When the bus driver climbed back out of the bus to deal with the lift, the beeping continued, and as the lift lowered, I saw that Sophie had startled into a seizure so I asked the bus driver to please turn off the beeping sound and simulataneously put my hands over Sophie's ears to muffle the cacophony. I also noticed that the bus has a name, and it's Minotour. You can't make this shit up, as my old writing instructor used to say. The letters, spelled exactly like that, are right above the door. Now, I am prone to metaphorical flights of fancy, as you know, and I know you lovely Readers are, too. Let's have a game about a bus named Minotour.

Give me what you got.

Hedgebrook, Writing and Space Dreams

Hedgebrook isn't a retreat. It's an advance.

Gloria Steinem

I bet you've forgotten that last year I was awarded a three-week writing residency at Hedgebrook on Whidbey Island. I haven't forgotten, but I do admit to thinking it was a dream and that June would materialize and I would be doing the usual June kind of thing which I write about ad nauseum here on the old blog. The thing is, it isn't a dream, and in a little over a month, I will be flying to Seattle and then to my little cottage to write and walk and read for three whole weeks. I met a poet the other day who had just completed a residency there. She was also a judge for the grants, and while the applications are anonymous, she told me that the nearly 1500 of them were of very high quality. She said, You must be a really fine writer, and I demurred and then wondered why I couldn't just accept that I'd gotten one, that I had worked hard for it and that this three weeks is deserved. The place is magical, she said. You will write and you will rest.


Again, a dream.


I  told a friend that I write now whenever I have a free moment and certainly for hours and hours each night. There's no writer's block for me, to tell you the truth, and the writing is a pleasure, not work.  I write under pressure, the pressure of life, in the spaces around life -- a life of teenagers and the minutia of extreme parenting (the seizures, the diapers, the wrestling with systems of care) -- and it will be quite an adjustment to just write with space and life merged. Does that make sense?

This place expands time.

Carolyn Forche

It's still a dream, I realize, as I type it out.

I'll be working on a project that I've longed to shape into a book. I'll be drawing on some of the How We Do It posts and hopefully weave them into meditations about disability and identity, about what makes us human or Other and so forth. It's inchoate and also pushing to be written. I have my old manuscript as well to shape up and finish, a memoir that has never been given a proper story arc and that demands an ending. I think I have an ending in our cannabis story and hope to gain some of my juju back and finish it up.

Check out who is on the Creative Advisory Council at Hedgebrook here.

Good lord. I told you it was like a dream, and I half expect to get a peck on the shoulder at some point with an apology for what was, apparently, a mistake. Oh my goodness, they might say, the Elizabeth Aquino that we chose is doing cutting edge work about poverty in the Phillipines! We are so sorry! Then they'll hand me a basket of food and a kayak to make my way back to the mainland, back to life and writing in and of the spaces around that life.


Wake up!

The Big O Gets a Checking Account, a Debit Card and a Name Change

Kids don't learn cursive anymore, and if they do, they forget it when they don't use it. Yes, I know some of you think the loss of mandatory instruction in cursive ranks up there with the other downfalls of modern civilization and depravity, but I honestly could give a flying foo foo. When prompted to sign his name, Oliver had a moment of panic and then with painstaking effort and concentration did so. He lay the pen down and told me how much he hates how long his last name is and what a pain it is to write it out. That's why I'm changing my name when I get old enough, he reminded me. Oh, yeah, I said, What are you changing it to again?

Luck, Oliver replied, Oliver Luck! Doesn't that sound dope?

Reader, I believe he will change his name when he's old enough to do so, and when you see it printed everywhere you'll remember this tiny little blog post, sprung from my tiny little mother mind.™

Cups

You shine, like a sunflower.

I'm stuck.

I need to divest myself of junk, both proverbial and otherwise.

I have too much stuff.

We are cups, constantly and quietly being filled. The trick is knowing how to tip ourselves
over and let the beautiful stuff out. Ray Bradbury

Twenty Beads

The first thing I did this morning was open the long, yellow envelope with the word MOM scrawled across it. Sophie brought it home from school on Friday afternoon, along with a tomato plant in a green ceramic pot. The envelope held a beaded bracelet, purple, pink and pearly plastic strung on elastic. I slipped it over my hand and raised my arm until it stopped on that generous part of my arm above the elbow. When I lowered my arm, the bracelet fell to the floor, so I picked it up and put it in the dish on my dresser that holds trinkets, a safety pin, a Buddha coin, and earring whose pair is lost. A lost pair. Pare me down.

Even in year twenty, these plastic beads strung on elastic, sprung.

Sophie's eyes implore me. Beseech, plead, do something. I'm not sure if I'm projecting the implore, the beseech, the plea. Do something. She and I are knit, intertwined, beads on a string, strung.

Is imagination greater than identity?

Happy Birthday Oliver!

It's always the best Mother's Day when your last baby's birthday falls on the same day. It seems like yesterday that I held my baby in my arms, and now he's fourteen years old. Happy birthday, Oliver. I love you so.

Remembering When I Was a Bird

It is the province of mothers to preserve the myth that we are unburdened with our own problems. Placed in a circle of immunity, we carry only the crises of those we love. We mask our needs as the needs of others. If ever there was a story without a shadow, it would be this: that we as women exist in direct sunlight only.

When women were birds, we knew otherwise. We knew our greatest freedom was in taking flight at night, when we could steal the heavenly darkness for ourselves, navigating through the intelligence of stars and the constellations of our own making in the delight and terror of our uncertainty.

from Terry Tempest Williams' When Women Were Birds, Fifty-four Variations on Voice 

 

Intimidating Words, Part Three

My friend Allison and I, melding our tiny little mother minds™.

People are crazy and times are strange

I’m locked in tight, I’m out of range

I used to care, but things have changed

Bob Dylan

You know my history with intimidating words. If you don't, please catch up by reading Part One and Part Two.

Today's lesson will be about the word Hegemony. Your instructor, though, will be my friend Allison, and your assignment is to read her blog post today. Here's the link:

Exploring Hegemony with a Tiny Little Mother Mind™

Now click on the Bob Dylan link below and try to listen to the words as you read the rest of this post.

I know that's a lot of links, but as I did all the little cut and paste things, I thought to myself how supremely grateful I am for technology. I read a lot of yada yada about how disconnected we all are, how stupid our children are becoming, how hideous and depressing technology is, and it just makes me yawn. I think about the hours I spent alone in my apartment in New York City back in 1995 with my screaming, seizing baby and one paperback book titled Seizures and Epilepsy in Childhood, a book that had approximately three or four sentences devoted to Sophie's diagnosis. Those sentences declared a very, very bleak outlook for babies like Sophie, and while I clung to the hope then that she would be in the tiny percentage of children who would go on to "do well," I had absolutely no one with whom I could --- well --- meld my tiny little mother mind.™ 

Let me tell you something. The treatment for infantile spasms -- the disease that I looked up in that paperback book twenty years ago -- is almost exactly the same today as it was then. The first-line treatment is ACTH, a steroid injected intra-muscularly twice a day that wreaks havoc on the immune system, and in our case, caused Sophie to scream 22 out of 24 hours and to develop such a bad case of thrush (yeast growth all over and inside her mouth and genitals) that we had to discontinue it. Oh, and it didn't stop her seizures, so we began adding drugs (8 of them, before she was a year old). I assume the side effects of ACTH are the same now as they were then and understand that one tiny vial of the shit costs upwards of $28,000. In addition to steroids, babies diagnosed with infantile spasms are also now prescribed Vigabatrin, a drug that we tried back in the dark ages of the last millenium when it was non-FDA approved. Currently, if you embark on the Vigabatrin path at any point in your child's seizure career, you are given some forms to sign that you understand the drug can cause blindness.  Finally, if your baby is diagnosed with infantile spasms today, in this millenium, you might very possibly be eligible for The Knife. That's it. Twenty years and oodles of technology, yet THAT IS IT.  

Don't get me wrong. I'm not blaming doctors or science or dedicated researchers. This is excruciating and deeply mysterious stuff. However, writing letters like the head of the American Epilepsy Society recently did to a United States Senator from Pennsylvania, a tersely worded letter* expressing The Party Line about cannabis and its disapproval is, at best, unethical. At worst, it makes me despair and see not stars but a giant, groaning black hole. 

I waited nineteen years watching my daughter seize uncontrollably on over twenty drugs. I watched her development plateau and then stall, spent thousands of hours negotiating with insurance companies to pay for treatments and borrowed tens of thousands of dollars to not only treat those seizures but to pay for childcare as my child grew yet never learned to speak, to use the toilet, to walk unassisted, to eat by herself or to sleep by herself, and fought year in and year out for that child's rights and integrity in literally every single system afforded to citizens of the United States. I won't talk about my sons here, Sophie's father, the marriage, the juggling, the whole catastrophe. Always, the seizures.

Then we tried cannabis, and you know the rest of the story.

Good lord, I've gone on a rant, haven't I? This was about cultural hegemony, a word that still intimidates me. I think I might understand it intuitively, though, and it's somehow sung right here, in these words.

*Email me if you want a PDF of the letter. I can't figure out how to attach a PDF to Blogger. Have a giant swig of vodka or mainline some heroin before you read the letter, though, because it's depressing as hell in its obeisance to Big Pharma -- 

Poetry and Rain

In essential things, unity; in nonessential things, liberty. 

In all things compassion.

Luis J. Rodriguez

That's Luis J. Rodriguez, the Poet Laureate of Los Angeles. I attended a wonderful evening of poetry this evening at my neighborhood bookstore, Chevalier's. I wasn't familiar with Rodriguez, but now I am, and I had the distinct sense that he is beloved. His poetry was funny and startling and made me glad to live in this town. Suzanne Lummis and Nicelle Davis read and performed as well, and there was laughter and wryness and deep sighs. Being at our little bookstore with so many people who love poetry right here in the city of angels made me glad. Glad. What a weird, muscular word.

It's raining.

Absurdity As Vice

I felt paralyzed momentarily this morning, worried that I don't express gratitude often enough, am mean-spirited and perseverate on the same things, over and over.

Anyhoo.*

I got the above letter in the mail from our new insurance company, Assurant, and what is a blog good for if not to demonstrate absurdity as I see it? The fact that I see absurdity in nearly everything and that some people might object or try to analyze that impulse as being self-protective or indicative of some kind of personality disorder weighs on me every now and then like this morning. I'm not a big drinker, drug user or even Advil-taker. I only flee from my problems in food occasionally and when I exercise, it's not fanatically. I don't have a coping vice except, perhaps, this dogged sense of absurdity in literally everything, and I'm grateful for that, alright?

According to the letter, Sophie's drug Onfi will now be rationed. What that means is that the drug is so damn expensive, the insurance company needs a really, really good reason to continue paying partially for it (and I emphasize partially because we pay a hefty premium and copayment for this drug every single month and have done so for over seven years). If you haven't been reading here for years, I can fill you in that I've paid anywhere between $150 cash for this drug when it wasn't FDA-approved, $500 when it was FDA-approved and marketed in the United States, $60 when I got it from Canada using friends as Drug Mules, $0 when a non-profit, underwritten by the company that made it "helped" me to pay for it, and now $90 with Assurant.** What this also means is that this drug is highly addictive and there might, apparently, be patients who abuse it or, rather, physicians who over-prescribe it to people who have insomnia or anxiety issues or whatever the hell else demands the power of a benzodiazepine. What this also means is that the pharmaceutical company that makes it probably aggressively marketed it and created, in effect, a need for it.  It appears that I'll be making The Rounds of Telephone Calls in July to ensure that Sophie's supply of Onfi is steady.**

There's no point, really, in complaining about this shit, is there? What I'll do instead is observe the absurdity of it.








*For those of you not in the know, the word anyhoo both bugs the hell out of me in its cheerfulness and fits my absurdist sensibility perfectly. That's why I use it.

** The Drug Mule posts are some of my favorites as far as absurdity goes. Look them up on my search bar somewhere over there to the right.

** We are currently weaning Sophie from that f*%king drug Onfi, expect to be finished with the wean at some point in the future, and if all goes well might never have to beg and grovel for it again.

Hope for a Sea Change on Audible and a Giveaway!

My Shebooks' mini-memoir Hope for a Sea Change is available now as an Audible selection. You can download it for $2.99 or get it free with a 30-day trial subscription of Audible. It's strange to listen to your own words read by someone else, but I really like the reader and am excited and honored to have it recorded.

I have ten free download codes for a copy and will give one to each of the first ten people to leave a comment here and also share the link on their own social media channels.

Here's the link:

HOPE FOR A SEA CHANGE AUDIBLE VERSION

Sense of Direction

You can be the perpetrator of your own emptiness, 

it can be the very thing you need, and it can still undo you.

Alexandra Fuller, After the Rains Came

I have a card on my desk with a picture of a fifties-era woman looking at a map in a car. The caption is I'm not lost...I'm exploring! I have a terrible sense of direction, get lost literally once or twice a week, make wrong turns daily, forget where I've parked my car, miss landmarks and can't read maps. I'm also pretty good-natured about it, except maybe the time I lost my car on a large college campus after midnight or walked up and down and around a parking garage for hours, crying like a baby. After taking a good long walk with a friend early this morning, I lay on my bed for much of the day, only getting up to tend to Sophie, do the boys' laundry and dust the living room. I am doing one of those cleanse things where you don't eat sugar or gluten or dairy or caffeine, and it's not going so well. I'm keeping to the requirements, but I feel like shit. I have a headache, my body aches and I'm irritable and weepyish. Apparently, I've been eating a whole lot of crap, and while I'm aware of that I haven't really faced up to it. It seems impossible that something so cliche could really be working to clean my body of toxins. I'm going to try to hang in there, though, because enough is enough. I've lost my body, my sense of self beyond what goes on in my tiny little mother mind.  I,I, I. What goes on in that mind is ridiculous much of the time, particularly as the world spins on its axis without my input, and Baltimore and Nepal happened in the same week. It feels lame, but the one body we're given is a sort of temple, isn't it? It's prone to degradation, so why hurry it along?  I doubt that I'll ever gain a real sense of direction as far as my body goes, but I'm going to explore it anyway.

Reader, are you lost or exploring?

The Urine Wheel

Medieval diagnostic tool: The Urine Wheel

I don't even know how to write about what I'm going to write. I don't even know where to start. The last couple of days I've been thinking so much about a story that involves a little girl with seizures, her parents and a doctor that I used to work with about ten years ago. The doctor is accused of medical kidnapping, and despite that inflammatory phrase, I am not surprised. Here's the thing. I worked as the Parent Chair on a national collaborative about ten years ago. The collaborative was funded by the federal government and implemented through the non-profit foundation National Institute for Children's Healthcare Quality. Our mission was to collaborate with teams from all over the country to improve the quality of healthcare for children with epilepsy and their families. Part of the initiative was to encourage and, in fact, demand that parents and families play an equal role in the improvement efforts, and my job as co-chair was to help implement that. My feeling then was that the state of healthcare quality for our children with epilepsy was abysmal, and there was nowhere to go but up regarding communication between families and the professional world. I was honored to work for NICHQ, and their efforts to include families were (and continue to be) near-revolutionary. The faculty also included a top neurologist from Wisconsin. Her name was Dr. Zupanc, and because this is a public blog, suffice it to say that I found her to be one of the most arrogant, patronizing doctors that I'd ever met -- I'd go so far as to say that she was as bad as they get. Whenever she spoke, I stuck my fingers in my ears in my tiny little mother mind and attempted to forge ahead. When I paid a site visit to her epilepsy center in Wisconsin, I was impressed by the sheer beauty of the place and understood that this doctor was capable of commanding vast sums of money to be invested in epilepsy -- an explanation, perhaps, for certain communication and "bedside manner" deficits.

In the years that followed, I heard stories from people who would become my friends, stories of how badly they were treated by Dr. Z (as we came to call her), how she bullied parents into adding more drugs to cocktails that weren't working, encouraged and demanded radical brain surgeries, dismissed concerns, turned on mothers near-maniacally. When she transferred to Orange County a few years ago, I cringed, particularly when I read all the accolades about her.

Fast forward ten years to the Cannabis Revolution in Epilepsy, the revolution that we've helped to pioneer. Who is one of the most vocal opponents? Who is the doctor who has called California Protective Services to report several families that I actually know? You guessed it. So, here's the story, and despite the sensational title, it's been corroborated:

CPS Threatens to Kidnap 7-Year Old in California

If you're on Facebook, you can read updates on the family's page:

Pray for Kennedy May

One of my favorite, albeit controversial bloggers, Levi Quackenboss, has a great post about the whole shebang, too:

Calling for a Medical Kidnapping Smackdown



When I first read about this story, I confess to just raising my eyebrows. You hear a lot of crazy shit from very crazy people in the alternative medicine world, and I've written before about all the interesting people with whom I share a bed now. There's lots of conspiracy theories, too, and I'm hesitant to embrace all of  them. This is different. I've witnessed the type mentality of and have first-hand experience with those physicians whose obduracy about parents' involvement in their children's medical care beggars belief. I'll only qualify that by stating that Sophie's neurologists are beloved, always work with us in professional ways and have been nothing but supportive. The few that weren't I shed, quickly. That being said, I have several friends in this cannabis community that have corroborated the details of this story, and while I hesitated to get involved because it all makes me very, very nervous, I think it's important enough to show my support.

I wish this child and her parents continued strength and courage and hope that they feel the many folks out here at their backs.

When she's all there