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.