Thursday, April 27, 2017

The Tiny Little Mother Mind™ Reports

First of all, I'm going to ask you to view the following video, if you can. 

If you can't see it, let me tell you what it's about.

Dr. Shaun Hussain, a pediatric epilepsy specialist at UCLA School of Medicine is a leading expert in the hard to control epilepsy syndromes category. That would include children who suffer from refractory seizures -- the seizures that medication does not help. Sophie was diagnosed with infantile spasms, one of the catastrophic epilepsies, when she was less than three months old. Dr. Hussain was probably in high school when I began injecting Sophie's thighs and arms with high-dosage intravenous steroids and then her first benzodiazepine which was, in the dark days of the waning twentieth century (1995), not approved for use in the United States. The drug was called nitrazepam, and it was given to me in a process called "compassionate protocol," a phrase that I can only throw my head back and laugh a long and bitter laugh over, today. 

Today. April 27th, 2017.

Today, when children are diagnosed with infantile spasms, they are still treated with much the same protocol, even though that protocol is not effective. Yes, new drugs have been developed and approved, imaging is more powerful and surgical intervention is more prevalent and sophisticated, but treatment is still not entirely effective, and a diagnosis of infantile spasms remains one of the most devastating pediatric epilepsies. Not a week goes by that I don't read about, receive an email from, a telephone call or a referral from someone whose child had infantile spasms, has infantile spasms or another epilepsy syndrome and who is struggling with constant seizures despite multiple drugs, often in combinations of three and four -- drugs with hideous side effects.

As most of you readers here know, over the next nineteen years after her diagnosis, Sophie was given twenty more drugs in various combinations, many of which were not approved for use in the United States, were only newly approved and little studied or not approved for use in children. I can honestly say that at a certain point, these drugs were prescribed in a way that I can only compare to a primitive crap shoot -- that the series of neurologists who prescribed them would often compare the situation to throwing darts, and that one or two of them openly admitted that they just didn't know how the drugs worked, why they didn't work and what to do, really, about Sophie. Sophie is not alone in this experience. Children like her are legion. When she was nineteen years old, I learned about The Realm of Caring* and the Stanley Brothers and put Sophie's name on a waiting list to try their high CBD oil. We began to give her cannabis oil called Charlotte's Web in late 2013, and her seizures stopped for the first time in her life for a period of weeks. In the nearly four years since, we have weaned her completely from one drug and are slowly weaning her from the benzodiazepine clobazam (Onfi) that she's been on for nine years, a drug so vicious that we might never be able to get her off of it, such is her dependency and the damage it's wrought on her brain. While she is not seizure-free, and there have been periods of great struggle, we achieve long periods of seizure freedom through careful tinkering with dosages and strains, the addition of THC and careful monitoring. Her quality of life -- and our family's -- is vastly better.

But this isn't about me.

The video. 

Dr. Shaun Hussain is leading the cannabidiol studies at UCLA and thus has ties to two pharmaceutical companies, namely GW Pharmaceuticals and Insys. Feel free to read up about both companies and what they're doing. The title of this Washington Post report should give you a taste: A Pharma Company that spent $500,000 trying to keep pot illegal just got DEA approval for synthetic marijuana.

In the video, Dr. Hussain makes some startling and very disingenuous remarks about cannabis medicine, including the horrendous last case history. It is literally rife with inaccuracies and bombast -- stuff that I won't deign to go over.  I participated in a panel "discussion" (quotes are because there was no discussion as the Powers That Be literally shut down we uppity folks with the tiny little mother minds™) with Dr. Hussain several years ago at a Brain Summit put on by the Epilepsy Foundation of Greater Los Angeles. The panel "discussion" was about cannabis medicine, and I spoke from a parent perspective. I wrote about it here as it was the proverbial straw that broke this camel's back as far as my trust and respect for the neurology world in general and the party line about cannabis in particular. It was insulting, demeaning and patronizing, and it continued even afterward in a series of emails with Dr. Hussain. 

 Toward the end of his presentation on the video, he advises the doctors in the audience that it would behoove them to report those parents who are using cannabis medicine with their children to Children's Protective Services. 

That might be the second straw that drives the broken-backed camel into the sand.

Here's my comment to the post and video on Facebook:

This video will probably be taken down, but before it is, take a look and a listen. These are the people -- DOCTORS -- with whom we must work as we navigate the medical cannabis world. Here's my comment, in case, it's taken down as well:
After parenting a daughter with a severe and uncontrolled seizure disorder for over two decades, I can't say I'm surprised, but I am appalled at the outright disingenuousness of Dr. Hussain's presentation here. The pretension, the condescension and outright ignorance don't enrage me as much as they confirm what I've learned as well about the neurology profession in general but specifically this subject. The laughter in the audience confirms, to me, that those in attendance, including the presenter, are nothing more than shills for the pharmaceutical industry. To speak of and warn doctors of their duties as "mandated reporters" is unethical and profoundly disturbing. I know for a fact that these same doctors are actively nodding their heads as parents navigate the cannabis world. You HAVE violated your Hippocratic Oath, quite effectively and systematically, over and over. I imagine this video wasn't intended for public viewing and that it will be removed, but there are many of us out here who will have seen it, transcribed it or will have heard of it. It doesn't surprise us, but it will further disintegrate the relationship between doctor and patient and foster increased mistrust toward those who are supposed to be serving us. Yours is a profession that will prescribe a powerful benzodiazepine to an infant, or any number of powerful drugs not studied in children yet remain obdurate about a treatment and a medicine for which there is reams of data and information. Shame on you.

*Realm of Caring is a non-profit foundation. The Stanley Brothers make Charlotte's Web. There are several other manufacturers of cannabis oil  using different strains of marijuana. Dr. Hussain, while joking about the good-looking brothers, neglects to differentiate between the two.

Tuesday, April 25, 2017

Denial and the College Road Trip

I took that picture on a road trip last weekend in Washington and Colorado where I was visiting colleges with Henry.

Did ya'll know that my boy is graduating from high school next month?

I'm blocking it out and will say no more.

Here we are in Spokane, Washington, on the campus of Gonzaga University.

We might have a basketball rivalry thing going on next year.

Hmmmmm. Just saying.

Tuesday, April 18, 2017

Identity is Fluid

So, this is a picture of me and newborn Sophie in March of 1995. I found it this morning when I was rummaging around in a drawer on my desk. It was precisely twenty-two years ago and less than three months from the day that life as I knew it would begin to unravel. As a friend put it: BTSHTF.*

When I see these old photos of The Time Before, I can't help but peer at them in a sort of writerly self-absorbed searching for the meaning of the whole clusterfu**k that we call life kind of way. I'm constantly wrestling with identity --what it is, exactly, that makes us who we were, who we are, what makes us human. I can remember who that young woman in the picture was if I think hard enough, and lately my life's strange and beautiful circumstances have reminded me of her, too --  but I believe we hold some kind of essence that is constant even in inconstancy, if that makes sense. I will go out on the proverbial limb here to include Sophie as well. That baby I'm holding was very different from the baby that was diagnosed with infantile spasms a couple of months later. I remember thinking in the months that followed that I'd been given a new baby, so violent were the expectations up-ended. Bless my sweet heart. I don't remember when I realized that Sophie's essence was intact, but today, twenty-two years later, I'm thinking about how identity is fluid, and it leaks out of the eyes and down the face from some kind of deep dark well.

 I toured a facility for developmentally disabled adults this afternoon. The place was a sort of Bleak House and fulfilled my expectations for such a place, even if I entered it with the usual dumb hope whose source shares room with fathomless sorrow. I was going to write a quasi-bitter post about the sheer physical ugliness of the facility, how many adults were crammed into tiny rooms with no windows or decoration or flooring or soft surfaces, how we determined that Sophie's toileting needs could not be accommodated as there was no changing table in the restroom, and how when I voiced my objections to that, I was reminded that perhaps the Senior Care facility down the road was a better fit for my daughter. How old are the people in that facility? I asked. Around 45-80 years, but we have some younger ones, the director told me with a straight face, even as she took the machete hanging on the stucco wall and slashed my chest. Reader, these people were kind and industrious, I swear.

Identity, you remember, can be fluid.

At worst, the seventeen minutes I spent at the facility was a kind of Monty Python scene of absurdity with tinges of Ingmar Bergman and the careening humanity of Fellini. Know that places like this are where WE AS A CULTURE HAVE CONSIGNED OUR FELLOW HUMANS WITH DEVELOPMENTAL DISABILITIES, at least those who aren't from wealthy families (and I mean wealthy, as in rich as shit). These are the places that WE AS A CULTURE LEAVE TO POLITICIANS TO FUND, TO HACK AWAY AND MARGINALIZE. At best, visiting Bleak House was the sort of experience that has helped to define me as a person and a writer, however self-absorbed.

I lifted my head from the steering wheel after crying there for a moment or two and realized that it'd be interesting to take a photo twenty-two years ATSHTF.** If identity is fluid, it is here, leaking out of the eyes and down the face from some kind of deep dark well.

Identity is fluid. Essence is intact.

  *Before The Shit Hit The Fan
**After The Shit Hit The Fan

Sunday, April 16, 2017

What I did past midnight tonight

I certainly didn't sleep. I was just closing my eyes, though, lying on my side, like I do, when I heard her beginning to seize in her room down the hall. I say down the hall, but it's only a few feet. I can hear her, even when she takes that first breath or perhaps it's an exhale because it becomes a groan, but first it's just a breath and I hear it, even when I am just there, falling to sleep. Falling. We fall into sleep and we fall over. Onto the ground. We fall under a spell and out of a trap, away from harm and backward in shock. We fall in love and also out of. I have fallen in and never out -- of love. I am in love right now. Can't you see it? Sophie has fallen, over and over, fallen under a spell while falling into sleep. Seizures often happen at the threshold of sleep, the place where eyes are closed and the thoughts are threads, a fish tail flicks. The liminal. The measure of my hatred for them is their resistance to falling victim to -- what? Anything. They've fallen victim to nothing so my hatred is everything. I know, even so, that I've fallen for it, delusion, illusion, maya. Things have long since fallen out of place. I have no control. I sat on her bed and wiped her hair away where it had fallen into her face. I wiped her palms, the drops of sweat, the drool, fallen away from her mouth. I told her it was okay. I wanted her to fall back to sleep. I wanted it to all fall away.

Things fall apart.

Nonetheless, there were no more diapers in Sophie's closet, and after a seizure, she needs a change. The case is outside at the back of the yard in the shed.

That's what I did past midnight tonight. I wore my long black nightgown and swung my phone's beam of light, let it fall right then left. Please, no creatures, I whispered. I walked down the steps from my bedroom and fell into night. Feet on gravel, a distant siren. I reached for the box, let it fall off the shelf, paid no mind to the corners there in the dark where the light fell away and I walked back to the house with the box up on my bare shoulder, the lace of a spider-web fell and caught on the lace of my gown.

We are brave people. We are strong.

Saturday, April 8, 2017

Active Empathy and Some Prom Photos

Have I told ya'll about our Indivisible group called Active Empathy? Indivisible is the national group that is resisting Trump's agenda in a methodical way. Active Empathy is what our local group is called, and a small group of us, including the four gorgeous founders, meet weekly to plan the BIG meeting which happens to be this afternoon. It's our second one, and we hope to galvanize people to really participate in the resistance. If you're local, please come or stay involved by getting our weekly emails. We have a facebook page and a website that are works in progress.

Yours truly is heading up the Healthcare/Disability Rights working group. I'm using today's meeting to encourage people to be educated about healthcare law as it now exists, to know what Medicaid is, what block grants are, what single-payer insurance is, etc. etc. Education is everything, isn't it? It's everything, and we live under a regime that is not only ignorant but actively promotes ignorance. We're also, as working group heads, going to give our groups at least one ACTION item to complete this week. I know from the years of advocacy work that I did in disability and special needs healthcare, that doing one thing, however small, is essential and that this one thing should be done within days of getting all charged up and excited. One small thing.

So that's what's happening around these parts today.

On another note, I don't think I showed you these photos of my gorgeous son and his date from the prom last weekend. They appeared on Instagram and Facebook, but most of you who read the old blog are sane avoiders of social media, so here's my pride and joy, the light of my life, the little boy turned to man:

Tuesday, April 4, 2017

Pirouexiting IEPs

I want to tell ya'll about the day I had up on a bluff at Point Dume in Malibu, but first I want to tell you about the funniest question I was asked by one of Sophie's teachers yesterday. It was Monday morning, about 8:30, and I was doing the usual morning thing with Sophie at home which calls for a combination of the physical strength of an elephant, the body dexterity of a circus performer and the patience of a -- let's see -- praying mantis. I'm not going to give you anymore of a description than that, so let your imagination take flight, especially those of you who've been reading the exact same shit for the nearly nine years I've been writing the old blog.


The teacher* called me to ask why I wasn't at Sophie's "Exit IEP," and I said, What Exit IEP? and he said, Didn't you sign the paper letting you know the date of the Exit IEP was April the 3rd at 8:00 am? and I said, Um, no, I never received a notice about an Exit IEP and actually thought this would be the first year in two decades that I actually wouldn't have to perform my high-wire act at the IEP! (actually I didn't say that last part but I thought it with my tiny little mother mind™because you know -- really? an EXIT IEP?**) -- and he said, The form should have been in her backpack a couple of weeks ago, and I said, Well, I never received a form, and thought to myself with my tiny little mother mind™that it was weird they hadn't called me if they never received the signed form but remember I was busy with my own circus act at home which involved the elephants, the trapeze artist and the praying mantis, so I just said hmmm and nooo, and contemplated a pirouette (muscle memory every time I hear the acronym IEP), and then he said what is probably the greatest thing that I have ever heard uttered in the nineteen year history of the Sophie Girl IEP (and oh, lord, there have been some doozies), and perhaps the greatest thing ever uttered to my Caregiver Self and that was this:

Maybe one of your household staff removed it from her backpack?

Reader, need I say more?

I think not and will tell you about Point Dume and the whales and the flowers and the turquoise water and the television series being shot on the beach below which included airplane crash wreckage and actor/survivors and then later the Topanga Ranch Motel pictured above (which subs in for my "estate") at a later date.

*For the record, I love and admire Sophie's teacher, and he will be sorely missed when we are hurled off the cliff in May or shot out of the circus cannon and over the Pacific.

** For the record, I told him FOR THE FIRST TIME IN NINETEEN YEARS to just do what he had to do for the Exit IEP and send me the paper to sign. I have always wanted to check that box on the IEP notice that my household staff neglected to give me that says, "I am unable to be at the Individualized Education Meeting but hold the meeting without me anyway," because -- well -- really, what difference would it have made if I hadn't brought in those doughnuts every year, wore that pale rose-colored leotard and chalked my hands before doing the most perfect pirouettes on the wire above the earnest heads of the Powers That Be?

Sunday, April 2, 2017

How We Do It, Part ?

Girl in wheelchair in sunlight, bookshelves, a wide ocean-green tile table with a pitcher of lilacs

I'm reading Molly McCully Brown's new book of poetry. It's called The Virginia State Colony for Epileptics and Feeble-Minded, and I'm waiting to spoon oatmeal into Sophie's mouth as she seizes in the sun. We're in our dining room, and everything is beautiful. These are partial seizures. Her eyes are wide open with a look of surprise. Her arms fly out every ten seconds or so, her hands cupped. Her hum is a beat longer right before the spasm. I am patient, reading and glancing, glancing and reading. I look into her eyes in between glances. They are glassy, my own (eyes and glasses) stare out, not her. I tell her it's okay.

The Central Virginia Training Center
formerly The Virginia State Colony for Epileptics and Feebleminded

Whatever it is—
home or hospital,
graveyard or asylum,
government facility or great
tract of land slowly ceding
itself back to dust—

its church is a low-slung brick box
with a single window,
a white piece of plywood
labeled chapel, and a locked door.

Whatever it is,
my mother and I ride along
its red roads in February
with the windows down:
this place looks lived in,
that one has stiff, gray curtains
in the window, a roof caving in.

We see a small group moving
in the channel between one building
and the next, bowing in an absent wind.

He is in a wheelchair, she is stumbling,
pushing a pram from decades ago,
coal black and wrong. There is no way
it holds a baby. Behind them,
a few more shuffling bodies in coats

I am my own kind of damaged there,
looking out the right-hand window.
Spastic, palsied and off-balance,
I'm taking crooked notes about this place.

It is the land where he is buried, the place
she spent her whole life, the room
where they made it impossible
for her to have children.

It is the colony where he did not learn to read,
but did paint every single slat of fence
you see that shade of yellow.

The place she didn't want to leave
when she finally could,
because she'd lived there fifty years,
and couldn't drive a car, or remember
the outside, or trust anyone
to touch her gently.

And, by some accident of luck or grace,
some window less than half a century wide,
it is my backyard but not what happened
to my body—

Some of you will think, why would you read such a book? Sophie is seizing in the sun as I read. As she seizes in the sun, her eyes glassy, I know she has visions. There is an angel in the tree just outside the window and in her eyes, some bit of glitter. The word glint.  I know she sees something more than I, I who see only purple lilacs in her eyes. In some far-off time or long ago, she might be have been a saint. She might have had visions, cured the sick, seen Mary in the garden, been Joan of Arc leading men into right. If she'd been allowed to be an epileptic, if there had been no fixing. No drugs. She might have lived not terribly but terrible (formidable in nature). She might have been burned, though, alive. We've had advancements, they say. There have been great advancements in the field of neurology, a medical paper insists. The word insist. I think of those saints with their hands held up and toward the sky. Appeal or protest or insist. Mary's hands lie crossed over her stomach when the Angel Gabriel visits, as he tells her the terrible news. Formidable in nature.

These are the thoughts that come to me as I sit waiting for Sophie to stop seizing. I am reading this book of poems about a terrible place where epileptics and the feeble-minded (Sophie) were locked up and hidden away, sterilized. This happened even into the late twentieth century. The Virginia State Colony for Epileptics and Feebleminded. Sophie's spasms stop with a sigh and release. If she had wings, they would rustle as she settled. I can feed her the oatmeal now.

You see where I'm going. Instead of terror, dyskinesia, paranoid delusions, suffering, it is visions, divinity, miracle, the heady scent of lilacs.

Saturday, April 1, 2017

The Awareness of Birds

Toes of sneakers on a dirty sidewalk with a silhouette of a crow blacked into the concrete.*

I think I told ya'll about my new gig, over at Cerebral Palsy Foundation. I will be writing, I think, monthly about various topics related to disability. CPF consults with the television show Speechless, a hilarious sit-com that very accurately portrays a family who lives with disability. The show features a terrific actor, Micah Fowler, who actually has cerebral palsy. Minnie Driver plays the mother, and I have to say that if it weren't for her being incredibly thin and glamorous with a British accent, the part could be mine.

In any case, this writing gig is awesome, and my first short piece is up on their blog. It's called The Awareness of Birds. March was Cerebral Palsy Awareness Month, so the topic for the month was "awareness."

Check out the Cerebral Palsy Foundation website, too. Poke around, donate, increase your awareness.

The Awareness of Birds

*I'm learning about how to caption photos for the vision-impaired. I'm bummed that I haven't been doing this all along, but I guess that means that even the most aware of us need to constantly improve and learn and listen.


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