Monday, December 8, 2014

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.


  1. This. A plant works. A wild weed.

  2. Wonderful wonderful wonderful. I'm so happy for your new world. And for letting go.

  3. I think your letting go is a consequence of wisdom, the kind that can only come from time and a weary sort of path. The fact that you have some sort of equanimity feels to me like peace. I love that you have been able to turn your attention and efforts and energy toward advocating for what you know to be true deep in your bones instead of railing against the machine of pharmaceuticals and medical professionals who never offered you any knowing. I see that, and you, as a gift. Keep on keeping on.


  4. Agree 100%. Cannot wait till we are off more of the damn Pharma drugs and part-way removed from the "business of epilepsy". Can no longer stomach the relationship of the Foundations with big pharma! And definitely no offense re the language. It "speaks " to me. Loved this post!

  5. So glad you are reaching a sort of peaceful detente, a not caring what those Pharma Phuckers are up to. So glad for the relief that cannabis oil has brought to Sophie, you and your family. You are a Righteous Warrior Woman, Elizabeth, and have every right to be. Sending love, N2

  6. Elizabeth, you have done it again. Your words ring so true they reverberate in my head all day.
    And let me ask this- what the fuck is a study with sixteen people in it? Really? Really?
    Oh, don't get me started on Big Pharma.
    I love and admire you so much it might be a sin.

  7. Sounds to me like you've stepped out of the reel.

  8. O wonder!
    How many goodly creatures are there here!
    How beauteous mankind is! O brave new world
    That has such people in't!

  9. A person can only take so much, do so much and then, no more. I'm thankful not only that Sophie is doing better but you gave me knowledge and guts to try it on my daughter, not for epilepsy but for anxiety. And it works. It works where Ativan and anti-psychotics don't work. Thank you.

  10. your words are so powerful, like you.

  11. "Peace is a journey of a thousand miles."

    Thank you for enlightening and shining a light for others to see the mountainous miles that some here have traveled. Thank you for being such an inspiration and teacher to so many. You have awakened.

  12. i'm here; nothing new to say, except that i am, as so often just witnessing. and testifying that letting go in general is terribly difficult, what youve had to contend with and let go from is beyond my ken.

  13. The place of letting go seems like a powerful, wonderful place to be.

  14. Did Sophie ever get her follow up EEG/MRI? What does her neurologist say?
    Sophie's seizures have come down dramatically and her quality of life gone up, and it may or may not be reflected in her brain tests.

  15. Anonymous -- Sophie did not get her EEG because I can't afford the co-pay and am unwilling to put her overnight in a hospital just "to see." I have no idea if her EEG is improved or not. I guess it would be helpful as proof, but perhaps I'm not all that into "proving" anymore, either. Her neurologist is excited that we're seeing such good results and is very enthusiastic at the differences she sees when we have three month office visits. Hope that answers your question!

  16. I love when you digress.

    I love the way you have let go.

    I love that you don't give a flying fuck.

    I love that Sophie's seizures have been reduced so much.



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