Wishing Trees and Medical Marijuana Laws

I forgot to tell ya'll about the wishing tree. I bought that craft kit years ago and stashed it somewhere that I forgot about every year. I'm not a crafty person but have the impulse to be one. I remembered it this year, though, and set it up. Basically, it's a tree with a bunch of branches that you decorate with paper bluebirds of happiness and pink flowers. There's a little box that sits beside it filled with strips of pretty paper. Guests take a slip of paper, write a wish for the birthday girl on it, fold the paper and hang it from the tree. Sophie got the nicest wishes -- no more seizures, sweet dreams, twenty more years, a happy life, etc. -- and that tree looks so cute that I might keep it up all through the spring. Pretty soon my house is going to resemble a tschotchke shop. I can't stop buying candles, especially if they're decorated on the outside and smell like Tabac/Myrrh, and do you know about these fabrics called Kanthas? I have them draped over dirty furniture, my ugly old upholstered headboard and a funky chair that I bought at a yard sale for $5 in Nashville, Tennessee over twenty-five years ago. If I close my eyes, though, I imagine myself in a sort of Vanessa Bell/Virginia Woolf Bloomsbury aesthetic.

Of course, they were real artists, literally painted their own furniture and wouldn't have been caught dead (with stones in their pockets) assembling a cardboard wishing tree, but a woman can aspire to a certain joie de vivre in a cluttered interior.




On another note, I read today that Senators Rand Paul, Cory Booker and Kirsten Gillibrand, a Republican and two Democrats, respectively, are introducing a bill that would end the federal ban on marijuana and institute a series of reforms which include downgrading its status from Schedule 1 to Schedule 2. This is a positive step for any number of reasons, but I felt a prick of annoyance at the language used in the article. The bill will be unveiled, it's a significant step, a first for the Senate, yadda yadda yadda. The operative word is introduced, and the good Lord only knows how long that introduction will go on, given some of the minds of our elected officials and, let's face it, the dodo birds they represent. Dodo birds will take oxycontin for their back pain or give their kids antidepressants and anti-psychotics and all manner of ADHD drugs, but what's going to happen to the moral fabric of this country if people start smoking pot all the time? Don't get me wrong. I'm glad the Powers That Be are getting off their asses and bringing this to the floor tomorrow morning, but I feel irked, too. I responded on Facebook with this comment:

I guess things are moving forward, albeit slowly. Maybe baby steps are good, but there's something always a bit discomfiting when the "powers that be" come together to "approve" of something that "the people" have been wailing about for decades. It bugs me, to tell you the truth. Just do it.

Maybe I'm just an old, jaded. burnt-out reactionary secret anarchist-cum-socialist curmudgeon who smells the stink of patronisation and paternalism. It reminds me, a bit, of the times the Pope comes out with an encyclical advocating some kind of moral order or decides that the faithful need to go easy on the gays. It's rare for someone in power to attribute some action on their part to the people who have actually made things happen, much less to say mea culpa or, in the case of this marijuana prohibition, the collusion of big business and conservative social policy has decimated the lives of tens of thousands of people who might have benefited from medical marijuana during the last seventy-five years, so let's get this thing done and do it now. And while we're at it, let's denounce William Randolph Hearst, Mr. DuPont and Andrew Mellon who conspired to remove access to this beneficial plant so that they could continue to reap enormous and obscene profits from timber, chemicals and oil and make what once was a medicine to ease pain, cure disease, stop seizures and fight inflammation and bacteria an evil substance provoking rape, immoral acts and thoughts and even murder (that's the history of marijuana, but we're supposed to revere these titans of business and capitalism and philanthropy).

Anyhoo.

I'm probably better off squirreling around my ever-growing agglomeration of wishing trees, books, Kantha fabrics and tobacco candles and doling out the cannabis oil than kneeling in some sort of obsequious gratitude to a bunch of senators in a Georgian building across the country.

Cannabis Questions Answered

Is Sophie still taking the same amount of Charlotte's Web, and how much does she take? Is it working? Is it a miracle? Do you think marijuana should be legalized? 

I think I mentioned a while back that I don't like calling any treatment that's been around for thousands of years and whose efficacy was basically hidden from the public because of politics a miracle.  A miracle is defined as a surprising and welcome event that is not explicable by natural or scientific laws and is therefore considered to be the work of a divine agency. I guess you could say that a miracle is also a wonder or a marvel, but when people start ascribing it to the supernatural or say that God gave us the plant -- well -- forgive my squirminess. I'm not a believer in that way. I just don't buy that God made the plant available to Sophie and not to someone like her in -- let's say -- Georgia, because She wanted a bunch of politicians to be arguing over who gets it and who doesn't and then somehow see the light and further glorify Her name by agreeing it might be helpful to some kids but only some kids and not all kids and certainly not with any of that funny stuff in it. Yesterday, I heard the mother of the American Sniper wailing on the radio and praising God for meting out justice to the sick soul of the soldier that shot her son to death by giving him a sentence of life without parole. At risk of sounding heretical or even offending someone, I wondered from the safety of my sexy Mazda where I was listening to this woman praise her God, if God had approved of her son killing those 166 people over in that evidently godforsaken country and then thought better of it and placed her son in the path of the other soldier who righted that wrong and then determined that he'd need to go to jail for a while and think about that and --- where was I?

The miracle. The answer to the question.

Sophie is now taking less Charlotte's Web Hemp Oil (CWHO) than she was last year, a tiny amount, really, and is on close to 50% less benzo than she had been when we began weaning in June of last year. The ratio of cannabis to THC in CWHO is approximately 26:1, and we have found that the coconut oil base is easier on her stomach. It appears that for many people taking cannabis, a smaller amount is better. So unAmerican, right? We have not added any THCa, or THC, something that many of the kids with epilepsy are taking to help seizure control (and something that God has determined should not be available in many states because of its psychoactive properties), but at least for the moment have tweaked the dosage to about the right point and are happy with the results. We believe the lower amount of benzo is allowing the cannabis to do its work and hope that as we continue to wean the drug --- slowly, slowly, slowly -- she'll continue to do better and better. This is touchy stuff, folks, and it's difficult to figure out. I know of many people whose kids are doing very well with cannabis, and I know some people whose kids are not doing so well or who have even seen a worsening of their symptoms. I think the combination of multiple anti-epileptic drugs and the exquisitely unique brain chemistry of each person make determining whether cannabis will or can help to control seizures very complex, but I believe fervently that every person should have the opportunity to try it and tinker with it. I also believe in legalizing marijuana in all forms and rescheduling it. Pronto.




Sophie is good. She's really good!

She's good right now, and that's a marvel and a wonder for which I'm very, very grateful. The universe is abundant.

Dispatch from the Revolution: Cannabis Oil Update

I am tormented with an everlasting itch for things remote. I love to sail forbidden seas, land on barbarous coasts.

Captain Ahab, in Herman Melville's Moby Dick

Exultation is the Going

Exultation is the going
Of an inland soul to sea -
Past the houses - past the headlands -
Into deep Eternity!

Bred as we, among the mountains,
Can the sailor understand
The divine intoxication
Of the first league out from land?

Emily Dickinson

Yesterday, I scrolled through an article from Neurology Reviews that describes a "study" on 16 patients of cannabis oil. The study is brought to us by Novartis Pharmaceuticals and basically casts a pretty dubious light on the efficacy of cannabis. It will be one of several "studies" and papers about cannabis presented at this week's grand American Epilepsy Society annual meeting  I also read a Medscape abstract with the unfortunate title What's Hot at American Epilepsy Society 2014, the first topic deemed hot being research on epilepsy and marijuana. In the interest of decorum, I'm not going to make any obscene jokes about the use of the word hot to describe anything having to do with epilepsy, unless you're like me and envision a layer of Dante's hell that houses not the epileptic but, rather, the world of neurology in general, pharmaceutical companies and the business of epilepsy. But, I digress. 

Yesterday, I also watched a beautiful video called Wanderers, by Erik Wernquist that primarily shows us a glimpse of neighboring worlds and uses the deep and resonant words of the great Carl Sagan as an overlay. As I read the announcements of the Powers That Be in the World of Neurology, I felt only the tiniest frisson of umbrage -- the instinct to react, to respond, to feel anger and frustration. I read others' comments about this upcoming meeting, about the "studies," their own vocal irritation and anger as familiar to me as my body parts, my own particular scars and birthmarks. Yet, my own is faint and muffled, not because I am tired, exactly, but more because I have actually let it go, in spite of myself. The letting go is not some spiritual surrender to a higher power, nor is it a hands up, white flag flying admittance of defeat. It is, rather, to be blunt, more a fuck all of that, I don't care about their studies response. In gentler terms, I've accepted that I no longer feel the need for vindication outside of telling our story, telling it over and over again to whomever might hear and be inspired by it. 

Here's the story: I sometimes gamely but usually with a visceral loathing gave Sophie the 22 drugs in various combinations (that had not been tested or approved for use in children) over the first nineteen years of her life in an attempt to stop her seizures that occurred mutiple, sometimes hundreds of times a day. I also tried the ketogenic diet twice. Surgery was not an option, and I thank the universe for that. None of those drugs worked well, most caused terrible side effects and some made her seize in novel ways. The ketogenic diet, so efficacious to so many, turned Sophie into a panicked, pacing and starved beast and to this day triggers near-PTSD symptoms in me when I think about it. At the end of last year, when I had not exactly given up hope but had, rather, resigned myself to constant struggle and a total loss of faith and trust in the business of epilepsy, we gave Sophie cannabis oil, first a high ratio product that a kind man found for us, and then Charlotte's Web from Realm of Caring. Sophie's seizures stopped. They stopped for weeks at a time. Sophie began to smile, be more alert, sleep better and not wake to the nightmare rounds of myoclonic jerks that had gone on for up to an hour each morning when she woke up for years. She stopped having a tonic clonic seizure (grand mal for the uninitiated) every single night at dinner for years. Sophie is not seizure-free, but I can assertively say that her seizures have been reduced by upwards of 90%, without side effects. We are weaning her from the drugs that have not worked, yet still have a malicious hold on her. Those drugs cost me nearly $200 a month in co-payments, and over her lifetime have cost many tens of thousands of dollars, an amount split up and paid, after wrangling and grappling and fighting, by corporate thieves, government, and our family at a devastating emotional and financial cost. 

The cannabis costs me around $350 a month, not cheap but entirely worth it given that it works.

That's the story, Morning Glory. That's the tale, Nightingale.

The letting go doesn't mean that I've given up on helping others, on advocating in general for children and youth with special healthcare needs. It does mean that I can speak my mind as a sort of elder person on the sidelines and support the admirable and enthusiastic efforts of those younger than myself, whose children are younger and who have many, many years ahead of them instead of behind. It does mean that I can think to myself I don't give a flying fuck what pharmaceutical companies and researchers are up to, nor do I have any trust that they will work in our best interest. With rare exception, they historically never have done so. Some will take offense to not just the language but the attitude. Again, I don't give a flying foo foo. I'll fight with every ounce of energy I still have so that other children will have access to cannabis and to be able to try it, and I'll do so by telling our story as truth.

I know I couldn't have done this -- this nearly corporeal surrender -- when Sophie was a baby, then five years old, then six, then ten or maybe even twelve. I couldn't have let anything just go -- the vague, pinched stress, the dull ache of something not right. The years of anger, of battle. The nagging sense of absurdity -- is it part of my own individual character or of the system itself? Or both?

It feels a bit like I've wandered, finally, into some new world.

Medical Marijuana, Endearments and The Washington Post

At the Ballard Chittenden locks, Seattle, Washington
February, 2014

This morning, I opened an article in The Washington Post with this title: 'Mommy Lobby' Emerges as a Powerful Advocate for Children. I wouldn't be going out on a limb, here, when I state how demeaning I find this title, much less how inept. First of all, I worked for years as a parent expert with national organizations dedicated to improving the access to and quality of healthcare for children, and as both a leader and collaborator with other parents and a mother of a child with special healthcare needs, I can state with much confidence that most of us don't like to be called mom or mommy by the medical establishment, much less a newspaper. Secondly, the lobby consists of fathers, too, particularly out here in California where single fathers of children with severe epilepsy have served as pioneers for their children and their access to medical marijuana. The fact that this lobby of impassioned parents is reduced to the title mommy lobby underscores some of the most frustrating problems with our hierachical medical/pharmaceutical establishment, particularly the lobby's need to nearly BEG for something to happen.

The rest of the article is informative in parts, but not one single mention of the relative inefficacy of FDA-approved drugs for tens of thousands of children with epilepsy is mentioned. I didn't see a single mention of the combinations of drugs that our children are subjected to, either, their often vicious side effects, and the FACT that many of them have mechanisms of action largely unknown. It would seem, by the article, that mommies are standing in front of legislatures all over the country and begging for lawmakers to help them to save their childrens' lives and their families' quality of life, while other mommies are heroically dropping this scary, unknown substance into their witless children's mouths. Nowhere in the Washington Post article is any sort of acknowledgement or even deference to the grotesque inadequacies of current treatment for refractory epilepsy, the labyrinth that many parents have navigated to get "approved" treatment, the serpentine path from diagnosis to adequate care, nor the enormous expense of the almighty FDA-approved medications that our physicians have, basically, thrown at us after a selection that conjures images of a dart game in a bar.

I don't have any answers to this and feel blessedly grateful that I live here in California, was one of the first people to obtain Charlotte's Web for Sophie and that it has helped her dramatically. I will tell you that I feel increasingly enraged, if not surprised, by the response of the medical establishment and the media to this groundswell. I'm powerful, but I'm not a mommy, and because this is my blog and my platform and not a reasonable place where I have to work rationally in front of the Powers That Be, I'll tell the Washington Post this:

You can start by speaking with veteran parents of the epilepsy world about what they've experienced for decades. You can acknowledge that parents begging for treatment from their legislators is ridiculous. You can stop using phrases like mommy lobby.

Oh, and as the incomparable actor Matthew Mcconaughey's character says in Dallas Buyers' Club (who fought similar battles during the early AIDS years): Fuck alla ya'll.

CBD Update, without photos

No sooner had those photos of Sophie gone up and out, curls flying (scroll down to see), than she had three big ones, back to back, on this rainy Los Angeles morning. But, you know what? I'm not going to be like my paternal grandmother, dressed in black and praying that I die, convinced that anything good, uttered, will turn to bad. I'm going to defy the jinx, stomp the ego that believes it can control every little thing. I'm going to exult in the fact that Sophie has had many good days, a number of good days, where she has had no seizures to speak of other than an occasional jerk. That's nearly a week of dinners free of tonic-clonic episodes, of mornings without clammy hands and days without clusters. Yes, nearly a week, the longest she's been seizure free in as long as we can remember. Sophie has NEVER had a honeymoon period on any drug, ever. Remember that she is taking a tincture that is not even the ideal proportion of CBD to THC, that we are waiting for Charlotte's Web, and that given this promising start, we have every reason to believe that she will continue to find relief, maybe even more relief.

Thank you for all your happiness, for sharing in ours.

Like my French professor always said,

Oui, Oui, Oui, Hell Oui!

(generally, I'll just get the note about the diapers and wipes with a sentence or two about seizures or irritability or Sophie being generally "out of it.")

Look out your window and see me doing my happy, yet restrained, naked dance. Join me.