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

On Set

So, I consented to appear with Sophie in a short film being made by a friend. I know what the guy does, and it's beautiful, exciting stuff, but I had no idea that what I was going to do was actually be a part of a real shoot, with lanes blocked off, a large city bus, some extras, a famous assistant director -- the whole shebang. It was cray cray, as The Big O likes to say and terribly interesting.  At one point an older gentleman walked into the set, clearly one of Los Angeles' many homeless persons, and one of the workers politely asked him to walk behind that bench you see in the photo where I'm sitting. The homeless man was super polite and did so, but what struck me as inimitably LAish about the whole thing was when he said quite placidly, OH! I'm sorry. Ya'll are shooting a movie aren't you? as he walked on by. I was basically directed to be myself, a mother with her child sitting at a bus-stop and engaging wordlessly with a young man also waiting on the bus.So, that's what I did, even as I died a tiny death inside when the very large camera, held by the famous assistant director who is also an actor practically hit the tip of my nose. I think it all came out the way it was supposed to, however it was supposed to. The Director was pleased and said I'd done my thing which I believe is be Elizabeth, Sophie's mother who loves her very much. I wheeled Sophie past the set when they were finished with me, loaded her into the car and drove off. It's a big world, Reader, and a strange one.

Don't tell anyone, but*

tonight I was filmed by a trio making a documentary about marijuana. I sat in a chair and babbled on for two hours about our experiences and my thoughts on what's going down. The guys and woman were wonderful, and it was really fun, to tell you the truth. When they'd gathered up their lights and cameras and cords and paraphernalia (so cool and interesting!) and left, I felt wired and just this side of anxious (because of all the thoughts and emotions stirred up), but it wasn't until Oliver came screaming down the hall with a glass full of water, Henry chasing after him (evidently upset because Oliver had been throwing ice at his car as he pulled away for lacrosse practice), and the glass went flying and the water went flying and the glass hit the floor as Oliver hit the floor and the glass shattered and everyone was screaming, no one louder than me I'M SO SICK OF YOU GUYS' SHIT! that I poured myself a glass of wine, retreated to my bedroom and told all present parties to not talk to me for the rest of the night and leave me alone. 











*I cursed at my teenaged boys.

Washing Up

I woke up heavy-hearted this morning, for obvious reasons. Go for a walk, a dear friend said. What right have I to bear a heavy heart? I wish I were religious, I said.

It feels like drowning sometimes, the silent sinking in to what is otherwise calm and blue, a surface that belies depth and darkness.

While dressing Sophie for school, I gathered her up like a baby in my arms, her long body curled on my lap. She looked into my eyes for a moment and gave me a shore.

Boy Question That Beggars Belief*

(after accompanying me to a store where I bought my own mother a Mother's Day gift)

Wait! Does this mean I'll be having to buy you a gift for Mother's Day until I'm 50 years old?












*You really can't use an expression like beggars belief too often, but the incredulity I felt called for it, especially when The Boy clarified by stating how expensive it would be over all those years. Call me heroic, because he's very much alive

How She Does It

Sophie had a rough day yesterday. Her seizures returned, but while numerous, they were brief and didn't seem to affect her so much. I'm not sure what to think, so I don't. This morning she was fine, except for sitting in a position too long on the floor that throws her knee out of whack so that she can't put weight on it (which is a different issue than the Todd's Paresis which occasionally affects her after a big seizure) until I literally straighten her leg and hear the grotesque pop of it going into place. These are the things that make me strong and cold and capable. I could never do what you do, some people say, and it isolates those of us who do it. Sophie stood up after I popped her knee into place and walked around her room, bent down to pick up a colorful strand of beads, got on with being herself. I don't know how she does it.

Nepal

His voice is licked
but his dreams
are the artillery of words loaded
to uncoil our strength.

Michel-Ange Hyppolite (Haitian poet)

I'm not much of a "prayer," but my heart aches for the people of Nepal, and I send them prayers from that ache.  Seeing ancient buildings reduced to piles of sticks, enormous sacred statues tumbled, ashy faces under rubble, the bloodied, torn pants of a woman being carried by others makes us feel wildly helpless.

That compulsion to write what we see. That compulsion to not sully with words what is beyond them.




The Real Work

It may be that when we no longer know what to do
we have come to our real work,

and that when we no longer know which way to go
we have come to our real journey.

The mind that is not baffled is not employed.

The impeded stream is the one that sings.

Wendell Berry

Children Are Dying - A Guest Post by Mark Storck*

Raegan and Deb at Disneyland, 2012

CHILDREN ARE DYING

Children are dying. I cannot put it any more succinctly than that. Their suffering goes on endlessly. The racking pain from repeated, uncontrollable seizures, the destruction of grey matter from an electrical cyclone in the head, is robbing them of any sort of ‘normal’ future.

As a parent of a child with a debilitating seizure disorder, I can attest to this fact, first hand. It is useless to my child, and millions of others afflicted with seizure disorder, to argue whether it is anecdotal or not…IT IS A FACT…one that very well may, one day, permanently take my child from my arms. It is also a fact, full-spectrum cannabis therapy not only subdues and eliminates some seizures entirely, but also helps to repair the damage caused by repeated seizures. When all other pharmacological efforts have been exhausted, and the side effects of those drugs are literally killing your child before your very eyes, please don’t tell me we can’t use a known, working remedy. I ask you to listen to these “real life” facts, based on thousands of parents now using this amazing and natural medicine and assist us in taking the necessary steps to save my child’s life.

Quoting negative ‘anecdotal’ stories and political propaganda, which have been passed down since the 1930’s, will not give my child relief. I’m not looking to get myself, or my child, high. I am looking to give my child medicine. Every day, I live with the very real fear that this particular seizure could be the one that takes my child’s life. Do you realize the emotional havoc that wreaks on a family? Do you care?

It is an appalling travesty of epic proportions, you require us to publically plead with you for the opportunity and inalienable RIGHT, to save our child’s life. We have been socially castigated, arrested, beaten and humiliated, merely for the sake of a plant that has been used for thousands of years to relieve human suffering. Of which, not one person has EVER died from an overdose. The facts are crystal clear: this is NOT a dangerous drug, it is a plant-based, holistic remedy used for untold millennia, bringing the human condition healing and relief. The influence and power of “Big Pharma” would rather we not have access to this natural healing agent, without their control. This should not be about long-term profits and boardroom tactics. This is a quality of life issue.

What I WILL tell you is: I won’t stop. Neither will the other parents who are now successfully treating their child’s disorder. This movement is gaining steam and whether you want to admit it or not, it IS saving lives!

Thank you.

© Mark D. Storck 2015

* As a rule, I don't post guest posts, but when I read Mark's impassioned words on Facebook, I thought they needed wider coverage. I hope you'll share them.