March Madness

The Department of Motor Vehicles, Los Angeles. CA 2017

My understanding of what's going on in this country is shrinking, and I find myself opening up articles, reading a few sentences and then sighing in exasperation or grimacing in disgust or taking in breaths to allay anxiety or rolling my eyes heaven-ward in bewilderment.

Are we supposed to understand what's going on?

I hate to say it, but I rely almost exclusively now on acronyms to express myself in this area. WTF?

I remember this quote by the great 18th century satirist, Jonathan Swift:

It is useless to attempt to reason a man out of a thing he was never reasoned into.

and

I never wonder to see men wicked, but I often wonder to see them not ashamed. 

We're all Gullivers here, methinks.

Sophie went back to school today for the first time in weeks, other than the day I brought her in for her birthday. I don't feel like going over what's been going on because, frankly, I'm so tired of the whole shebang, and I imagine you are, too. Suffice it to say that she's trending better even as we slowly wean her from the hideous benzodiazepine and supplement more aggressively with THC. I'm trending better right along with her because you know where she stops, I begin or where I stop, she begins and it's a fine, fine line. I also got acupuncture from our beloved Dr. Jin.

Yes. THC, baby. The psychoactive stuff that I myself have not partaken of since the halcyon days of college at the University of North Carolina at Chapel Hill. If I'd had any idea that I'd be administering a pale green gold oily version of it to my seizing and drug-addled daughter thirty-plus years later, I would have smoked more and studied less. Hell, I would have joined in with something more than tolerance when my boyfriend and his housemates watched the Tar Heels play basketball with the sound turned down and the bootleg Grateful Dead tapes turned up.

Anywho.

If you hear Old Racist Alabama Elf-Man Sessions or Old Up Big Pharma's Ass Georgia Cracker Price make any cracks about medical marijuana being a joke, tell them I'm going to beat the crap out of them in my mind. My tiny little mother mind™ knows few boundaries, is exasperated, disgusted, anxious and bewildered and would love a good red neck upon which to project its conflicts. Just a little March Madness.

Speaking of conflicts and the Tar Heels, did ya'll watch that game yesterday? It was a nail-biter that I watched with my sons and Sophie. March Madness for sure. This is a picture of when we had fallen behind Arizona after an early 17-point lead. I have quite effectively brainwashed my sons to be ardent Carolina basketball fans, and they were nervous wrecks.

Here's a video of the action when things got really tense at the end, right before I began to fold the boys' clean socks into balls, a task that I turned over to them when they were about five and seven years old. So many boring white socks I thought I'd go mad, wrote Virginia Woolf. I thought I was going to have a stroke or a heart attack watching the last few minutes of the game and even folded The Brother's laundry and smoked a few cigarettes in between bong hits.*

Between the not smoking too much THC in college, giving Sophie enough THC to help her brain today and parenting my boys to cheer ardently for a team that I love despite not knowing a damn thing about the sport -- well -- I'm going to humble brag here about my parenting skills. I am bewildered, to say the least.















* Just kidding. Virginia Woolf did not write that.

THC, Baby

Sophie in West End apartment, New York City
1997

The tiny little mother mind™in concert with several other tiny little mother minds™ thought that a small amount of THC, given during a particularly prolonged cluster of myoclonic jerks that might and probably would have culminated in a large and violent generalized tonic-clonic, might do some good.




Mark this space.















I'm going to admit that my hesitation in typing out anything positive is borne of a centuries old superstition that probably exists in most cultures and certainly exists in the southern Italian ones of which I am a descendent. By uttering something positive, I will jinx it and something bad will happen next. I think it might be called Murphy's Law for the WASPs among you. In modern times this might be called being a control freak or maybe even narcissistic and certainly egotistical and self-absorbed -- as if my every action and thought could influence the outcome, good or bad, or that it's all about me. That I don't believe I can jinx the good by typing out the bad is evident in the number of "bad" posts I have on this here blog, but remember my tiny, little mother mind™ and cut me some slack.

I know nothing and I'd bank on you knowing nothing, too, at least as far as why the hell Sophie's brain is so damn dysfunctional. I feel like I have to mark the positive, though, if I'm going to truly live in the present and be optimistic and cheerful (as per my I Ching reading).

Anyway, I gave her a little blip of THC during the cluster, and do you know that the seizures stopped? It wasn't immediate, and an argument could easily be made that they would have stopped eventually. That wasn't even the mind-blowing part, to tell you the truth. What happened was that the veil over her eyes was lifted and she looked clearly at me and smiled. She kept smiling, too, for the next few hours, off and on. She also had no clamminess and stopped drooling. Clamminess and drooling are two things that strangely literally break me. It's like they're superficial manifestations of the whole damn clusterf**k, and I feel broken, literally broken, when Sophie is clammy or drools excessively. I just know that she's deeply miserable and uncomfortable. After the couple of drops of THC, though, she looked brighter and definitely happier. Her palms were dry, and she stopped drooling. She seemed really, really comfortable.

Was she stoned? Perhaps a little bit, but that's okay.

THC, baby.

I write a lot on here about the effects of Sophie's seizures on me and our family, and I might not often convey how anguished I feel about the effects of them on her. I'm thinking of it, though, all the time. While there's a certain amount of dissociation for me which I imagine is a survival technique, the border between Sophie and me is very thin, a scrim, really. I believe that comes from the two of us being a kind of extreme parent and daughter. Sophie is completely and utterly dependent on me in the same way that she was as an infant. She's also powerfully herself, imbued with an evident grace and intelligence that people have remarked upon her entire life. This doesn't mean that our identities are blurred as much as it means they are fluid. That relationship is one that I know other mothers and sons/daughters like us struggle with -- it's the cause of much anguish, of marriages and family relationships broken, but it's also something precious and wondrous and rare.

I gave Sophie a bit more THC again later in the weekend, and the same thing happened. I might be on to something, and despite my superstitious nature, I'm going to keep you posted. Don't forget that we are on the frontline of this medical cannabis revolution and that the Powers That Be are taking their sweet time, mired in politics, money and party lines (we need more research). It's harrowing, but we on the frontline have to not only tinker with dosages and tweak products and strains but do it without the approval and sometimes with the indifference of those Powers That Be. Just the other day at The Neurologist's office, after suggesting for the 5 millionth time that I consider the VNS, The Neurologist said, I know you really only like to do the natural thing, though. It was tiny, but it was a sting, and given how difficult and complex this whole medical cannabis journey has been, I couldn't help but feel the great extent of my tiny little mother mind.™ The Powers That Be are going to do things in the way that they've always done them, though, so in the absence of real partnership, we're going to do it on our own. It's highly individualized. Ironically, though, the scrim between Sophie and me is probably the single most powerful help I get when I'm faced with crisis, and it works both ways. I know when she's comfortable, and I know when she's not.

THC, baby.

The Quarterly Tiny Little Mother Mind™ Report

Someone said this: Science is more than equations or experiments. It is a window to humanity, a quest for understanding, and, often, a way of life. 

I poked raspberries in Sophie's mouth. She's a bird these days, less -like than ready to fly. She opens her mouth and reaches toward the plate, around me, ready for the next and the next. Her father took her to the dentist last week, but they had to leave without the cleaning because she was too rowdy. The strain of cannabis that we're trying and the dosage that we've tinkered with so diligently under the direction of Dr. Bonni Goldstein is helping Sophie. Yesterday, she had her first full-blown seizure in nearly ten days. That's some data right there, a pattern building. It's a fallacy peddled by neurocapitalists that we need more evidence. Here's what's working for us: less pharmaceuticals, more cannabis. Long-term effects are now.

Back to Regular Programming

This is the last bit of sweetness you'll see or read for today.

I've got the first of a regular column up on marijuana.com that I hope you'll check out. As I mentioned last week, I'll be writing regularly for them and eventually migrating over to cannabis.com. I'll be doing interviews, human interest and news stories as well as features. The column I envision will be a series and will chronicle our own path toward healing. It's very exciting and a tad intimidating, and I'm reminded every single moment I'm doing it how positively revolutionary this all is. Honestly.

Today I read yet another article about another state's legislature dithering around with medical marijuana laws. I've listened to presidential candidates, "top" neurologists and so forth and so on speak gravely of the need for more research and their fears and concerns about everything from predictions of a sort of stoned populace driving willy nilly to children accidentally ingesting giant cannabis edibles and the country's morals literally going to pot.

Can I hear a sigh?

Can you smell the bullshit?

May I rant for a moment?

Call me crazy, but these doctors, lawmakers, politicians, pharmaceutical companies and pharmacists don't give a "rat's ass" about the "dangers" of marijuana or the health of children. They care about power and money. Diabetes is one of the nation's leading health scourges, isn't it? And the numbers of children diagnosed with diabetes has skyrocketed. Let's not even get into how many children, at ever younger ages, are being diagnosed with various mental health disorders and learning disabilities and then given drugs to "help" and "control" them, even as the numbers continue to rise and no real long-term studies of the effects of these drugs over time exist. Any child can go into a 7-Eleven or some other junk store and purchase a Coke or a Slurpee or any number of chemical and sugar-laden drinks that rival the size of a grown man's head and drink it down -- hell -- a few times a day if that kid is so inclined. I believe a Big Gulp has nearly 5x the amount of sugar recommended as a daily allowance. I suppose it's still arguable whether the grotesque over-consumption of sugar, particularly in processed foods and sodas, is at the root of the diabetes and obesity epidemics, but you can bet those big companies like Coca-Cola and McDonald's are rarely admonished or restricted from hawking their wares in ever more sophisticated ways to children. Hell, there's a McDonald's in the lobby of the Children's Hospital of Los Angeles, frequented by disadvantaged families visiting the MediCal clinics and bald children in plastic red wagons pulling IV poles. Children's welfare, my ass. In Utah yesterday, the Mormon-heavy legislature passed a bullshit and arguably useless cannabis bill, despite the entreaties of numerous patients and families. Guess who wrote the bill that effectively sabotaged an earlier, more scientifically sound one that patient and family groups supported? A legislator who is a pharmacist. Guess who advised the legislator and helped to write the bill? A doctor who founded a company whose mission is "to make quality of life better through oral, non-psychoactive cannabis products." Guess who put out a special edict several weeks ago condemning medical marijuana? Prophet Monson of the Church of Jesus Christ of Latter Day Saints.

 I'm not making this shit up.

Every now and then, you have to get up off your knees where you've been for months and years, begging the Powers That Be to help me, please please help me, and stretch to your full height standing and ask them to disengage themselves from religion, special interest, power and cash.   Every now and then you might have to scream at them.

So, consider that a scream.

Reflections

I can't get enough of my new dining room set-up. A lot is changed around here. Oliver gave me that sitting Buddha with the pot that holds incense. I don't like incense, though, so it's empty which I think is more fitting. To be empty. Emptied. I remember being a little girl at church on Sunday and nearly fainting and certainly gagging when the priest walked down the aisle swinging that thing around with incense wafting out and around. I felt as if I were suffocating. Perhaps that's symbolic of my wrestling and then fleeing the Catholic Church. Perhaps it's just that I hate incense. When Oliver gave me the little Buddha incense holder, he included a box of cheap incense, and he lit it and immediately the house smelled like one of those stores that sells things for the spiritually materialistic. I'm actually prone to spiritual materialism -- I love mala beads around my neck and wrists, my red Buddha necklace, my turquoise Buddha ring, the Mother Mary cards, my Book of Changes, the Poet Tarot Cards. But no incense.



I took a shower tonight, and while the water beat down on me, I thought about jinxes. I thought about Sophie doing so well for the last couple of days, and maybe it'll only be the last couple of days, but it's been a good couple of days. Have we found the sweet spot with the strain (ACDC) and dosage ( a little higher)? Or is it something else? Is it the hot, dry weather and absence of pressure? Is it just -- well -- just? It occurred to me as I leaned my forehead against the tile and closed my eyes that despite the passage of nearly 21 years, I still know so very little about what makes my daughter's brain tick -- and tick too much. Despite those 21 years, and countless showers where I had very similar thoughts, where I crouched down and cried while the baby screamed in the bedroom, where I leant into the tile, exhausted, the tile perhaps like Roman stone, trod on, trod on, trod on, I still know so little. My sighs and tears and musings are always the same, an endless cycle, samsara. Suffocating. To be emptied. An empty vessel with room for gratitude.

Fear, Carry and Conceal

Tucson, Arizona, 2011; photograph by Paolo Pellegrin
via The New York Review of Books

I have several friends, particularly in the medical marijuana community, who are ardent Christians and political conservatives or libertarians. Their beliefs in many regards are antithetical to my own, despite the fact that we share much in common, namely our children with seizure disorders. A couple of years ago, I had to disengage from one member of this community when he derided the anguished cries of the father of the UCSB shooter for stricter gun laws. This person then derided me, called me a coward and declared that it was people like himself that had to protect lazy people like me. It's too easy, I think, to call a person like this insane or stupid or even to feel scared as shit that they're carrying guns around.

Lately, I've noticed on Facebook that a number of these people -- my friends -- are posting quite exuberantly about gun shopping, about applying for gun licenses and carry and conceal permits. The comments that follow these status updates are enthusiastic, even down to the emoticons of guns and happy faces. Their reasoning is generally along the lines of protection, that carrying a gun will protect them and their family. The other day, I sat on my front lawn with Sophie and a guy who was going to do a little work on my house. He, too, is an ardent gun enthusiast and spoke openly about the need to protect oneself from bad people, to arm oneself and learn to shoot well, in the event of a home invasion or a threat to my children or myself.

I might just be a dumb-ass, but I am not afraid.

I really don't understand what everyone is so afraid of, why they think concealing a sophisticated piece of killing technology is nifty and what sort of statistics they've seen that I haven't regarding defensive gun use in the home or out at the movie theater or in a grocery store or child's school.

To be frank, the only caveat to my lack of fear is -- well -- you. You with your glib photos of guns, your cocky aims to protect yourself and your children from dark forces, your conceal and carry ardency, your deep cynicism and paradoxical blind faith in -- what? In what lies your faith? Please enlighten me.


I've been mulling these things the last few days, inarticulate and struggling to understand, repelled and repulsed and uncomfortable. I didn't want to resort to sarcasm, to scorn or contempt -- I like these people, feel bonded to them, even devoted. Yet, distance. My brain's wrappings -- they're undone. I don't understand. In one of those amazing instances of synchronicity, tonight I read the brilliant Marilynn Robinson's long essay on faith and guns and fear in The New York Review of Books.  I hope that it will provoke some response, that I will. I'm not afraid and have nothing to carry or conceal.

Large Gargantuan Doctor Minds™

The Third Circle of Dante's Hell, The Inferno
Gluttons

Today's visit to The Neurologist included the usual bringing her up to speed on the amounts of medication Sophie is currently on, how much of the Onfi we've weaned since the last visit and a couple of jokes about the drug Fycompa (that causes homicidal and suicidal ideation) and the drug Potiga (that causes blue lips and nails). I made the jokes, and The Neurologist gamely laughed. We also discussed the CBD and the THC and how well they're working for Sophie. She even walked in without a wheelchair! The Neurologist exclaimed. Then, apropos of nothing -- or maybe because of the homicidal/suicidal ideation and blue jokes -- she mentioned the Vagus Nerve Stimulator, a medical device that I've heard about since it was first introduced in the late 1990s when two of my friends at the time traveled to Ohio to have one put in their young children with refractory seizures. The various neurologists we've seen over the years bring it up in a sort of lethargic way, so I've never really thought of it as a compelling treatment for Sophie, and I still don't, even with what I learned today from The Neurologist -- that They've made some enhancements, namely an ability to be adjusted in smaller increments. Such is my lethargy, I don't feel like telling ya'll what the VNS is, so feel free to look it up on the Google. My mind wandered a bit when she told me about the enhancements -- toward wondering why mini-vans were first made with only one sliding door and why having them on both sides was such a genius innovation and couldn't have been done in the first place.

At worst, The Neurologist skipped over the extraordinary results of CBD and THC on my daughter. At best, she was doing her job and sharing information, and I'm grateful for that.

I'm going to call a spade a spade. Sophie's neurologist is Dr. Kalayjian. I really like and respect her. She is very supportive of what we're doing and sympathetic, always. She's a good doctor. At some point in the otherwise enervating discussion (remember that word?), she said that Another Neurologist exclaimed the other day, I need more research! I get questions all the time now about CBD, but we just don't have the research! In calling a spade a spade, I'm going to call the Another Neurologist, Dr. Heck. I've known Dr. Heck for a really long time and even sat on the board of the Epilepsy Foundation of Greater Los Angeles with her for a time and at the same table at a gala or two. She never remembers me, but that's fine. She's clearly got a large gargantuan doctor mind.™ It was Dr. Heck who summarily cut off our panel discussion about CBD last February at the Epilepsy Brain Summit. I'm calling spades, spades, when I also name Dr. Hussain as the doctor who also patronized us that afternoon and who continued to do so in private emails I exchanged with him. I believe I reached the point of no return in the email thread when I pointed out that when he was in high school, Sophie was diagnosed with infantile spasms, and that today, twenty years later, as the head of the infantile spasms program at one of the best epilepsy centers in the world, he's still using the exact same treatment (well, now we've got Vigabatrin formally approved despite it causing serious eye damage and then there's The Knife) with the same abysmal results. I might have added that it would behoove him to have a bit of humility, or maybe not. I can't remember because my tiny little mother mind™ had spontaneously combusted in the confrontation with his large gargantuan doctor mind.™

Anyhoo.

Why am I typing this out here, calling spades, spades? As I made my way through the circles of Hell that constitute the USC parking garage, mainly curse words and phrases came to mind as responses to Dr. Kalayjian's comment about Dr. Heck "needing more research." I didn't have it in me in the moment back in the office, distracted as I was by Sophie's formidable strength and drive to get up and out of the joint (no pun intended). To be honest, these phrases might have included if she and the rest of the docs got their heads out of their asses..., and f**k your godforsaken studies, and try looking them up because there are reams of them! 

Reader, I was not directing these ugly thoughts at Dr. Kalayjian, as her head is decidedly on her shoulders, and she's very supportive or at least superfically so. They were directed at Dr. Heck and all the other large, gargantuan doctor minds™. Again, these thoughts only came to me as Sophie and I stumbled through the parking garage looking for our car (I am directionally challenged). When I'd finally found it and situated Sophie in her seat, given her a cold drink and turned on the engine, all curse words flew out the top of my head and what I was left with was this:

Studies? Studies? 
More research? 
How about Sophie? 
Why the hell are you not responding to Sophie? 
Here's your study! 
Here she is!
Look at her!
Pay attention! 
Listen to me! 
Listen to others like me! 
Stop blowing us off!
Stop reporting us to Children's Services!
Stop prescribing multiple drug regimens! 
Be excited! 
Be curious! 
Take notes! 
Follow our progress! 
Take it seriously! 
Don't dismiss us as anecdote!
Open your minds!
Remember that with few exceptions, you are no more intelligent than most of the people caring for their children with refractory epilepsy and in many cases, you are less experienced!
Your field is a dark one, and you do not have all the answers!
You missed the train eighteen months ago, and I'm giving you a chance to get on board! 
Take it!

Cannabis Oil Questions Answered, #7

When you give Sophie THC, do you worry that she is getting high?

No.

* That was the short answer. Here's the long answer. We are currently supplementing Sophie's cannabis oil with four or five drops of THC a couple of times a day. The THC seems to help with the Onfi withdrawal symptoms, particularly the tremoring that she was doing, over and over, and seemingly all day long. The tremors looked like seizures, even, as they were jerks -- hard ones -- in her arm and leg. When she sat on the floor, cross-legged, she'd bang her knee over and over on the floor. If you walked with her, she'd jerk her arm, over and over. They were not seizures, we found, through that godawful EEG. She doesn't do it anymore, as long as we give her those few drops of THC. As for getting high, if she feels a bit high, I really don't give a flying foo-foo. Somehow, we are supposed to accept the fact that every single one of the drugs that are given to our children from birth onward have hideous side effects, or are being used "off-label," or have an "unknown mechanism of action," yet are discouraged from trying a medicine that has thousands of years of history of use, reams of studies already done, no reported deaths and arguable long-term impact on the brain. 

I know, I know, I know. I've talked about this until I'm blue in the face.

An older man in the parking lot of Trader Joe's noticed the End Epilepsy bumper sticker on my car. He asked me what it was all about. I told him that my daughter has epilepsy and that I used to be on the board of the Epilepsy Foundation of Greater Los Angeles and that I supported its efforts to end epilepsy. I also told him that my efforts now were more for anyone or anything that supports the medicinal use of marijuana. He told me that he has an adult son who had terrible seizures throughout his childhood and how he wished they could have used it. He asked me whether Sophie was using CBD or THC or both. I said, both. Then we laughed at people's concern over whether an epileptic might get high with CBD and a few drops of THC. I wish! I said. In fact, I told him, I support the legalization of marijuana both recreationally and medicinally, and I'm tired of making the distinction.

Other Cannabis Oil Questions Answered

# One
# Two
# Three
# Four

# Five

# Six

Brainless and Just About 52

I've got some whiney first world problems that include a broken air-conditioner. We're moving into one of those godawful late summer, early fall heatwaves here in southern California, and our old air-conditioner finally broke. The new AC unti can't be installed until later this week. It's about 85 degrees in the house, so I sat outside in my car, listened to NPR and then watched a great video about cannabis that the Tearful Dishwasher sent my way.



I don't know if it's the heat or just the whole clusterfuck, but the ongoing contemplation of this cannabis thing makes tears prick my eyes. So does the campaign of Donald Trump.

When I was young and in college, I went through a rather insufferable period (at least to my parents) when my eyes were seemingly "opened" to the rest of the world. I had grown up in a relatively conservative and definitely Republican household, went to a southern prep school with its fair share of Bible beaters and Young Lifers (the evangelical, feel-good group that made my skin crawl even then before I could ably articulate why) and just really never openly questioned the conservative status quo, other than to insist to my boyfriend at the time that I was in no way going to be a stay at home mother with no career and lots of kids. The insufferable part came when I started learning about more progressive and liberal values and thrust them upon my parents with all the condescension that people in their late teens and early twenties who've never had to do a single, damn thing on their own tend to do. And I know this is still going on, because I hear it from my friends with college-aged kids who come back from their first years away, militant about language and pronoun use and rape culture and on and on. When you're 50 years old and being lectured by a person in their early twenties, even if they're of a different race or nationality or sex or sexual proclivity -- well -- it's boring, to say the least. I know for a fact that my own parents were more worried that I was some sort of communist living in their midst than a drug user, for example, and I imagine to this day they rue sending me to a very liberal university that if not created a liberal me, at the very least, uncovered it.

I was thinking today, in the driveway, about those days and about that statement my mother attributed to Winston Churchill. It goes something like, If you're twenty and a conservative, you don't have a heart. If you're 50 and not a conservative, you don't have a brain. I'll be 52 years old tomorrow, and apparently, I haven't a brain. I am sick to death of everything conservative -- especially the status quo around medicine, pharmaceuticals, government and anything that claims authority. I'm in one of those Fuck It All Let's Get The Heck Out of Dodge Plant Our Own Cannabis And Make Our Own Medicine kind of moods.

Or maybe I just have heatstroke.

How We Do It: Part LIV

No one really wants to rage, except when there's nothing about which to do so. My own simmers below the surface of things, beautifully contained. Savory. Hot springs. Remember my story of the neurologist who had called children's services to intercede when several people I know went against her wishes and put their children on cannabis? She also was involved in an alleged "medical kidnap case." She apparently rages, when there's nothing about which to do so. She wrote this piece, posted in the New York Times. I missed it because I was in the fairy tale woods of Hedgebrook, but I read it last night, felt the heat pick up.  I picked up Sophie's refill of Onfi today, paid $60 for six boxes of liquid benzo that will, hopefully, be one of the last batches before we've fully weaned her. We've been weaning the drug for the last eighteen months, taking a tiny bit away every six to eight weeks with a predictable array of side effects that hit after three days, ten days, three weeks and then off and on until we hit a steady spot and take away a tiny bit more. We're just over 50% weaned, and we've discovered that adding a few drops of THC each day helps the withdrawal symptoms. I think about the players when I swipe my debit card to pay for the Onfi -- the researcher that figured it out, the pharmaceutical company that made it, the government that approved its safety for use, the neurologist who ordered it, the pharmacist that scraped it into the bottle, the insurance company that determined whether it should be "covered," the parents that pay for it (pay whatever amount it's worth at the moment -- $1,000, $500, $90, $63, $60, free) then fill the syringe with it, the young woman who opens her mouth and takes it, and the brain that bathes in it. It all ends there, in the bloody, wrecked bath. I am reminded, again, of the difference between resignation and acceptance, where they fall on the continuum of rage. I am a master of muted rage, the good girl gone wild only in her head.

Sunday Secular Sermon: Foolball

Leather football helmet with built-in glasses, 1930

It's time for my every other year football rant. Today's rant is courtesy of this fine article by Mark Whicker for the LA Daily News. It's the story of a young man brought down by years of brain trauma, and we all know it's been going on and continues going on and will continue to go on. The article was posted on Facebook by a friend of mine from college who happens to be Whicker's wife and also a fine sports journalist. A lot of my other friends on Facebook are posting pictures of their sons' newly buzz-cut heads as they prepare for another season of football at their respective high schools, heads that will be at a ridiculous high risk for concussion, if they haven't already had one.

I just don't understand -- on any level -- why football continues to draw tens of thousands of kids at ever younger ages when we know the chance of serious head injury is quite substantial. The amount of glory football players even in high schools continue to get boggles the mind. I imagine the same kids who play at these high schools would be thrown out of high school if they smoked one joint and were caught. Then again, smoking a joint is illegal, and playing football is evidently exhilarating, fun and wholesome, part of what it means to be an American. That's interesting to me and actually quite ironic, given marijuana's efficacy in helping football players with head injuries. Evidently, the NFL has a plan for victims with dementia, of which there are legion: $88,000 a year if you're hospitalized. Like so much else in American culture, prevention is not the key. We like to damage things first and pay up later. Bomb the hell out of a country and then award millions of dollars to contractors and corporations to build it back up. Call it hearts and minds. Pay tens of millions of dollars to fuel an industry that begins at age four or five years old, kneel in prayer before a game and then beat the shit out of the opposing team, later stand by as legions of middle-aged men become collateral, descend into madness, depression, alcoholism and dementia, pay them tens of thousands of dollars and then invest millions in businesses to make safer helmets.

Oh, and start investigating the efficacy of marijuana in healing brain injury, which I suppose has its upside. The NFL is probably a hell of a lot more influential in getting marijuana okayed by the Powers That Be than a bunch of parents with dying or epileptic kids.

Play ball!

Pottage: A Message to Publicists About Me and Pot

Public library, Los Angeles

Every day I get multiple emails from various publicists offering me books to review and talk about here on the old a moon, worn as if it had been a shell or even reality shows that I might be interested in sharing with my readers. The books can be about everything from baby pacifiers to parenting techniques, and my favorite pitched reality show was for a couple having sexual problems. You might wonder how and why these publicists get my name, and I just have no idea other than that they're using some kind of search engine that pulls up my name and affiliation with perverse activities because -- you know -- I'm all about that.

A few months ago, I was asked by some publicist to get a free copy and review a book by former drug czar and family values man/blowhard Bill Bennett. The name of the book, which is now published, is Going to Pot:Why the Rush to Legalize Marijuana is Harming America. That I happen to have met and actually argued with the man himself because of his personal affiliation with someone I know quite intimately (but not perversely), and not only found him as insufferable in real life as he is on television, made the pitch all the more ironic. Dear Suzie, I replied, Clearly, you've been reading my blog and know that this is a perfect match for me and will truly appeal to my readers. Please send me the free copy of the book, and I'll take a look and let you know what I think. The book came a few days later, and it took me all of twenty minutes to skim through the chapters, lingering over the brief few lines about dubious medical claims and then to toss it in the trash. Just the other day, while winnowing through my hundreds of books, I came upon a signed copy of one of his American hero books, and I threw that one, too, into the box headed for the library. May some wealthy white woman doing volunteer work at the library stumble upon it and bring it home to her privileged children smoking pot in their bedrooms and be edified. What I should have done is what a friend suggested: shred em, roll em and smoke em.

Anyhoo.

This morning, I got another appeal from a publicist asking me to review a book called Marijuana Debunked, that purportedly uses scientific research to argue a case against the legalization of marijuana. To be fair, the gist of the book appears to be that use of marijuana in the teenage years is detrimental to brain development, and we do know this to be so, but the author apparently projects the dire consequences of marijuana use into adulthood and how it takes a toll on people's relationships, finances, careers and personal lives. There's also a section about the deception of medical marijuana laws and how they encourage teenage use. I had read enough when I saw the tired gateway drug bullshit. The name of this book is Marijuana Debunked, and the email enlarges the title and makes the word Marijuana large and green for emphasis. As my friend said, with whom I shared this ridiculous email, What a crock of shit book. You could use that as a review.

I know that I'm a tad biased, but if you're a publicist and reading this blog post (and I seriously doubt you've ever read any of my blog), you need to do your research because I'm not your gal. My daughter's brain and life were ruined by seizures and legal pharmaceutical drugs, yet saved by medical marijuana. I'm perfectly aware that my sons' brains are at the peak of their development, that they should not interfere with that development by smoking marijuana, just as they shouldn't smoke cigarettes, drink beer, have unprotected sex or drag race on Ventura Boulevard. You also need to tell your writers that they should do some research as well. Take a look at the article in a recent New Yorker about the tunnels built from Mexico to the United States, used until quite recently as marijuana laws have eased (and thus removed the profit), to smuggle gargantuan amounts of marijuana into this country (now it's cocaine) to feed the insatiable desire of Americans. Read about what is, essentially, conscripted or even slave labor to build these tunnels and how workers are duped into the work and then killed when it's done. That article is not only well-written but edifying in a way that underscores just how absurd the continued drug war, particularly against marijuana, really is.

You're wasting your money on me, frankly, and filling my inbox up with garbage.





There's an informative pdf file, published by The International Center for Science in Drug Policy, called Using Evidence to Talk about Cannabis that everyone should read and use when people put up these specious arguments. The link to the PDF (that I can't figure how to load) is also in a recent Huffington Post article here..

Making Space for Stories (and an updated embed)

Those are new Benzo-Withdrawal Drool Bandannas that I ordered online. I couldn't resist the marijuana leaf one and hope it has extra powers as it wicks away the vile drug that permeates Sophie's body.




I don't have much to say or write today. I've been thinking a lot about an article I read in Philly Voice about vaccinations. The writer, Amy Wright Glenn, is a pro-vaccine journalist and mother, but she addresses those of us whose children have been injured or killed by vaccinations with unusual gravity and admonishes those of you who would argue against our beliefs and stories. Here is a brief excerpt:

Unfortunately, it’s easy to disregard the stories of vaccine injury, disability or death as statistically insignificant or inconsequential. Collectively we fiercely embrace a utilitarian ethic with regard to vaccine injury. The stories of families suffering serious injuries are too often ignored, discredited, used to further anti-vaccine campaigns, or quietly accepted as a type of collateral damage in our noble war to eradicate the scourge of infectious disease from the planet.

I will say that this is, perhaps, the only article or opinion I've ever read on the issue that doesn't make me literally sick to my stomach or provoke what I can only call post-traumatic stress syndrome. Those overwhelming feelings come no matter the position, and after twenty years I'm only dimly aware that they are, perhaps, related to deep and damaged feelings of not being heard.

One safeguard against a decrease in vaccination rates is the public ridicule awaiting those who question the ever-increasing number of required immunizations. Even parents who were formally compensated by the vaccine court report feeling ridiculed. For example, in 2006, Florida couple Theresa and Lucas Black received a $2 million settlement along with $250,000 a year for medical expenses from the vaccine court. Why? Their 14-year-old daughter Angelica is permanently and profoundly disabled after receiving a standard round of inoculations at 3-months of age.

No matter how many times I try to reasonably talk or write about this issue, even going so far as to allow a renowned journalist to interview me and take photos of my family for National Geographic Magazine, I've never been able to convey what Ms. Glenn does so beautifully in her opinion piece. I know that's because of the emotion I feel and convey, natural given my own experience. I hope that you'll all read this piece, even those of you who joined in the social media mockery early this year or who believed that those of us who choose not to vaccinate our children or who do so on a different schedule should be vilified or mocked or pay fines or whose children should be kept out of school.

Nineteenth century British philosopher Jeremy Bentham argued that an action is morally permissible if it serves to increase the greatest good for the greatest number of people. Contrast Bentham’s utilitarian ethic with German philosopher Immanuel Kant’s deontological, or duty based, moral theory. According to Kant, individuals are not means to be used to justify an end, no matter how pleasing or far-reaching such an end may be. Individuals are “ends unto themselves.” In other words, we have value independent of our usefulness to society. 

Thank you, Ms. Glenn, not only from the bottom of my vast heart, but also from the top of my head and my intricate, mysterious brain. You have made space for our story.

Given these legal and market-driven realities, we must make space for the stories of families who pay the price of our increasingly mandated utilitarian ethic. 

Watch this, my pretties. It happened today in the United States Congress:

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.

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.

Fight the Power*

That's Sophie, and when her mind is clear and the seizures at bay, she can stare right into your soul. New readers should know that despite 22 medications and treatments, Sophie found no relief from tens of thousands of seizures over the first nineteen years of her life. When she began using Charlotte's Web in late 2013, her seizures lessened dramatically and that gaze became ever more penetrating and knowing. We're one of those families you've been hearing about, a family decimated by two decades of uncontrolled seizures, vicious side effects from powerful FDA and non-FDA approved antiepileptic drugs and then a radical reduction when cannbis oil is introduced.

Sophie is not alone. There are thousands of children like her, but they do not have access to CBD.

As her voice, I'm going to talk a little here about what's going on in Washington regarding CBD and hemp. There is a meeting on Wednesday, June 24th to determine the fate of CBD. This is the meeting of Senate members called the Caucus on International Narcotics Control. The Senate Caucus on International Narcotics Control was created to monitor and encourage against drug abuse and narcotics trafficking and to monitor and promote international compliance with narcotics control treaties. 

As you can imagine, that's one scary and powerful group of senators.

How would something so benign as CBD end up in their caucus? Here's a metaphor: We're all in a giant swimming pool, swimming in our carefully marked lanes. The Stanley Brothers are just one swimmer in that pool, along with countless other people growing and making hemp products. There's lots of room. Pharmaceutical companies, namely GW Pharmaceuticals, a British behemoth, has a lane, too. They've working on Epidiolex. That's fine. They should have a lane. The really extraordinary swimmers, the lane where all the action is, though, is not this giant pharmaceutical company. The lane that literally came out of nowhere is our lane, and it's made up of hundreds of families whose lives have been changed by CBD -- whether it's Charlotte's Web or any number of strains of high CBD/low THC products. Keep that image in your head.

Here are some facts:

1. CBD and Hemp should be regulated as dietary supplements due to the very low toxicity (LD:50 (lethal dose rating) of 1:40,000 compared to aspirin at 1:20). These products already fill our store shelves in all 50 states with known amounts of THC (less than 0.3%) and unknown quantities of CBD. 
2. There has already been research to establish that 1500 mg of CBD daily was well tolerated in humans.
3. 17 states have passed cannabis legislation since February 2014. That's 16 months. All but three of those are high CBD/low THC legislation. This is an example of the extreme need of this underserved population.

Who do you think is the strongest opponent of this process?

The strongest opponent of this process has been pharmaceutical companies, namely GW Pharmaceutical Company who stands to lose a large part of the market if CBD becomes a dietary supplement. In some states like Alabama and Florida, GW Pharmaceuticals is actually using state funds to pay for their expensive trials.

You do not need legislation to do a clinical trial. This could very well be a serious misappropriation of state and health department funds. Do you want your state paying the tab for a gazillion dollar company?

Here are some more facts:

1. GW Pharmaceuticals partnered with Bayer HealthCare, a subsidiary of Bayer AG. Bayer was on the original ALEC committee that introduced the original medical marijuana legislation back in the mid-noughties.
2. ALEC is the American Legislative Exchange Council, and is just one of the ways that Big Pharma lobbyists write and influence laws in their favor. 

Hmmmmmmm. 

Apparently, GW Pharmaceuticals is fine with cannabis legislation and efforts that would help them to line their pockets, but it's a stretch of the old imagination to imagine them wanting families to get access now to keep their loved one alive, especially if it cuts into their lane. 

We're talking about room for everyone, here, a lane for all swimmers. GW Pharmaceuticals wants the whole damn pool.

At risk of sounding like a conspiracy theorist, let me tell you something.

1. Parents' stories are being discredited. Just think of the disparaging remarks about placebo effects that Dr. Amy Brooks Kayal made on the Dateline special. We are, evidently, a bunch of crazy parents who can't properly count seizures and evidently have voodoo powers to regulate EEGS (that's sarcastic, of course).
2. Doctors who are supportive of CBD are discredited and frowned upon. There's a party line that is being pushed.
3. They're using propaganda to destroy the quality of the product, throwing around the term "artisanal" with the implication that we need the pharma model (despite the fact that we've been safely using cannabis for 1000s of years without that broken model)
4. They're attacking the safety of the product and of the compound in general.
5. In pushing for more research, they used unknowing and inexperienced families with promises of enrolling their children in the trials to push their agenda.
6. In pushing for more research, they're pushing the dosage of the product so high in trials that it creates negative events (so far, diarrhea). It seems to me that they need to prove that this can't exist as a dietary supplement.

Expect them to run their public relations and marketing campaigns (the pharmaceutical advertising budget is in the tens of billions) next on the basis of how wonderful their companies are, and insurance companies will follow suit, covering this "orphan drug" that will reap them untold profits.

In the proverbial nutshell, it looks like Big Pharma wants the whole shebang. It wants CBD to be a pharmaceutical. It's some scary shit.

As people who have been hurt again and again by a broken pharmaceutical system, we will not allow this to happen. You can't allow this to happen. If you think you don't care about CBD, that it's a limited component and that CBD legislation is destructive, think again. I hate to say it, but mark my words: these people will come after THC next. Can these powers be more powerful than the people? They are proving to be so.

We are Sophie's and countless other kids' voices, and we're swimming in a very big pool. We might very well get kicked out this week. Please help us fight for access. This is not about THC. That's another very worthy fight. This is about access to cannabis. It's about fighting the power. It's about doing the right thing. It's about being able to look back into your child's eyes and have them look right into your own soul.

Coalition for Access Now



*This post was co-authored by Heather Jackson, Executive Director, Realm of Caring Foundation

Fight the Power as an Italian or at Least Wander Around It*

Italian anti-Fascist fighters, November 1944

Oh dear Lord. Please no one ask me what I think of the woman who identifies as a black person when, in fact, she's a white person. I just don't have it in me to join the discussion and will leave it to less exhausted finer minds than mine to figure it all out. I'm generally fascinated by these kinds of things, but lately I've felt nearly comatose and even bored when the newest wild story comes out. I know that says more about me than anyone else and is probably indicative of mild depression or at least a dissociative disorder, but it's the truth. I'm having a hard time not saying I don't care when people ask me what I think about anything these days. Ironically, one of the things I'll be working on beginning next week when I leave for my residency at Hedgebrook involves my own wrestling with identity -- both mine and my daughter's. Hopefully, I'll be out of this funk and able to organize my thoughts and care.

As I drove around the shitty this afternoon, listening to the interminable talk about the woman who identified as black but who was really white, I did think about my own ethnic identity -- how I'm one-half Italian, one-quarter Syrian and one-quarter Scotch English. If people ask me what I am, I tend to say Italian because I definitely identify more with my Italian ancestry than the Middle Eastern or northern European. I can't tell you why exactly, but I feel Italian. Yesterday's post provoked some really great comments, including Mary Moon stating that she'd heard Italians don't believe in God so much as God's mother. Ha! That's true of me!




I was also thinking about The Powers That Be today, mainly because I got a letter in the mail informing me that our insurance company, Assurant, will no longer be in the health insurance marketplace as of January 2016 so we'll have to start looking for a new individual plan in November during that open season which sounds like we're all going hunting (and wouldn't you love to hunt down an insurance company and hang it, stuffed on your wall?) but actually means you're allowed to enroll in a certain window. Insurance companies and the whole healthcare system in this joint are kind of fascist, don't you think? God, I wish I could say that I don't care, but I'm going to have to care and scurry around and do all the stuff that needs to be done, including making sure that Sophie's Providers are covered and that her drugs are covered and that we can afford the premium and it's all so exhausting and I just don't care.

On the other hand, I've been engaged with one of my favorite Realm of Caring people, Heather, on Facebook who has done an incredible amount of work with this medical marijuana thing. She's one of my heroes, to tell you the truth, and just a pleasure to know as a person. She's indefatigable -- probably not unlike one of those Italian anti-Fascist fighters even if she doesn't exactly identify as one. She shared my recent blog post titled Access Public Service Announcement where I took to task the head of the American Epilepsy Society who was just so dooooooown on that recent Dateline special. It turns out that I did a radio show back in April, and the doctor with whom I spoke was the very same one! You can listen to it here. She was equally as dooooooooown on the radio show, too, and Heather and I can't figure out why these people aren't more excited by our stories (Heather's son has been seizure-free with CBD for nearly two years!). I said would it kill them to express some enthusiasm and marvel a bit because they've been stymied so long? Then again, maybe they just don't care, and lord (or given my Italian identity should I say Mary) knows, I understand that.








*This post is a ramble, a wander and it might make no sense. Read at your leisure.

Flashback

I lifted this from my own blog, just over four years ago.

Damn.

That's a lot of water flowing under the bridge, isn't it? I'm not sure whether to laugh or cry.

Ya'll should definitely click here and read the comments. Some of you were very, very prescient.

Thursday, June 9, 2011

Sophie's next seizure treatment?

An evidence-based medicine approach to therapeutics requires scientific demonstration of a drug's efficacy as well as knowledge of short- and long-term adverse events that must be balanced against the drug's potential benefits. All of this information is lacking regarding the effects of smoking marijuana in the treatment of epilepsy. More research is needed before patients should consider marijuana for seizure relief, particularly because this represents criminal activity under US federal law and may be accompanied by adverse medical (and legal) events.

Andrew N. Wilner, M.D.

 in an article on MedScape titled Marijuana: A Viable Epilepsy Therapy?: Conclusions

Damn. I was hoping that this might be an option for us.