Friday, May 9, 2014

Collective Dissent

 A few years ago I wrote about Pasquino the Protester and joked about my probable relation to him. You can click the link and read that post, or, for the purpose of this post, just know that a pasquinata is an anonymous lampoon, usually written in verse that hearkens back to the tradition of Roman dissent. The oppressed can lodge their written complaints against government or religious authorities by posting the accusatory poem at the base of a statue. I joked in that post that if you remove the p and the s, you'd have my last name, and that therefore I must descend from a long line of protesters. That being said, though, when you're in possession of a sharp tongue -- however articulate -- you feel the sting of fear and sometimes shame in provocation.

I've been mulling about a few things of late, inspired by the awesome success we've seen treating Sophie with cannabis oil. I've given a lot of exposure to our experience here, and given the subsequent community that's grown out of it, and my offline work of advocating for children and youth with epilepsy with several national non-profit epilepsy foundations, I have the advantage of maybe, sort of, knowing what the buzz is. And the buzz is beginning to grow, and, I'm afraid, is beginning to grow antagonistic. Not a week goes by that I don't hear from several people, -- emails, telephone calls and the like -- asking my help or advice regarding their own situations with their children and adult children with uncontrolled epilepsy. As a rule, these are people who are struggling with their own neurologists who are resistant to cannabis, ignorant of it and, at worst, downright condescending and scornful of the treatment.

I'm going to be provocative here and suggest that despite the growing publicity, and the turning of the tides in many state legislatures, the Powers That Be, namely the neurology community, is explicitly resisting what looks to be a radical change in epilepsy treatment for the 30% of people who have drug-resistant epilepsy.

Is it ego? Neurologists are, I'd venture to say, among the most egotistical of physicians, which isn't necessarily a bad thing, but when your own child has been more harmed than helped by their "brilliance," you wonder whether the arrogant are drawn to the profession or the profession makes the arrogant. Arrogance breeds contempt -- contempt for the very real anguish of these families -- and a sort of blindness and stubborn refusal to take responsibility and acknowledge that one's way is simply not working.

Is it that they're scared shit-less that they themselves did not come up with this? This also has to do with ego, I imagine, but it's been my solid experience that with the exception of one visit to our own neurologist, the fact that Sophie SEIZED DAILY FOR NINETEEN YEARS AND THEN STOPPED SEIZING DAILY WHEN SHE BEGAN TO TAKE CANNABIS, and not a single neurologist (and I've know many and I know they know what's happened to Sophie!) has made any effort to contact us and find out what's up is outrageous. I've long suspected that these doctors simply don't care. I'm now almost certain that they actually don't.

A man from New Jersey who contacted me last week told me that despite having a daughter who is 29 YEARS OLD, with severe autism, self-injurious behaviors and seizures, he found no support in a recent visit to her neurologist when they consulted him about cannabis. In fact, the neuro told him that he found much of the talk "anecdotal" and even incorrect. Outrageous. And you'd better believe that Pasquino would tell this person to take his daughter and get thee to a state where it's legal and buy some stuff and try it because you have nothing, nothing to lose.

Is it some grand conspiracy with Big Pharma? Well, don't get me started. There's an industry out there worth billions of dollars, dependent on people's lifelong addiction to whatever meds are prescribed. We're stoning an entire generation of children on drugs to keep them "focused," "less anxious," "less depressed," etc. with little to no long-term evidence of efficacy, so why would I trust the collusion of neurology with pharmaceutical companies? Let's just say that a little green plant that anyone can grow, extract from and make an oil that stops seizures would be of interest only if you could make a case that it's dangerous.

Is it a stubborn resistance to anything that does not conform to the high and almighty tenets of traditional Western medicine? Since medicine is now firmly entwined with not just politics but industry and commerce, I confess to not trusting it at all, to tell you the truth. Call me provocative. Call me nuts.

Another person I spoke with recently told me that her neurologist had reported her to the child welfare office because he disagreed with the way she had decided to treat her child's epilepsy -- namely, to wean her off the drugs and begin a course of medical marijuana. Outrageous.

I maintain that there is a growing resentment toward neurology in the air, and that the ball lies in the neurology court. Most reasonable people -- and let me tell you, most people who care for those with uncontrolled seizures are formidably reasoned and resilient -- agree that testing needs to be done so that our children can have access to a safe product at a decent price. What we resent, I think, is the stubborn refusal to acknowledge what's going on, the systematic throwing up of walls to make it more difficult to obtain cannabis when your child has failed multiple standard treatments, the outright lies told about so-called established, tested, safe, studied drugs and perhaps most importantly, the lack of compassion and real understanding of what we have endured as families with children who seize constantly.

I was asked to speak on a panel about our experiences with medical marijuana at the upcoming Epilepsy Pipeline Conference in San Francisco in early June. I am doing so reluctantly as I imagine there will be a number of people who are not just averse to what I might have to say, but actually not interested in what I have to say. Maybe I'll bring along a statue stuck with numerous pasquinatas and sit it in the inevitable gray folding chair next to mine on that panel. Instead of telling Sophie's story, I'll read others' protests in a stentorian Roman voice, a collective dissent.

In the meantime, here's my pasquinata:

I let you take my baby and twirl her around,
show your students what was wrong.
You called her disaster
I let you take my child and fill her up with poison
Darts that you shot at a board
The closest to the center was first
Riddled, she was called unlucky
When it was your bad shot 
and all those darts that ruined her.
I turn away from your protests now,
I don't care what you think


  1. This is you at your finest.
    This is Truth with a capital T. This is powerful and sure.
    This is you, changing everything. For the better.

  2. Wow! Ms. Moon is right... this is Truth. Thank you.

  3. Stand strong, my friend. Stand strong.

  4. Exasperating !! Go to the conference - speak the truth. It has to be done no matter who is listening, who is paying attention. Your eloquence will help someone, someone! to hear.

    Here's hoping the hotel has a good bar.

  5. I think it is fear. No offence but your country has been waging a "war on drugs" for a long time now, and losing. Marijuana sadly got lumped into that war. You are asking doctors to oppose their own government and ask that marijuana not only be made legal but be used on children.

    I don't have a problem giving it to my daughter, it helps. It smooths over her anxiety, just enough. But the mindset of the entire country, of North America has to change and marijuana has to be made legal and come into the mainstream of our society.

    1. I agree with your comments about the failed "drug war," and certainly about our collective culture of fear of marijuana, but disagree that if those fears were removed, the neurology community would be in. The drugs currently given to young children with epilepsy in horrifying amounts and combinations, despite the known FACT that a tiny percentage of people will see a benefit after failing two drugs, is downright unethical and particularly odious when the same physicians cry out that they need more evidence before supporting patients who are desperate to try it. I think it has more to do with power and certain obstinate mindsets than fear.

    2. Big Pharma should take advantage of this and lobby congress. They could grow it and study it. Find out why this helps when nothing else does.
      I don't have epilepsy. I smoked it during chemo and radiation. No gory details but I think I might have died or gotten very close to it without it. I hated doing something illegal was very awkward with my teenager.

  6. This is brilliant and it needs to be said. It is so deeply frustrating that neurologists are refusing to even look at the evidence. How disheartening to think they don't care. I am glad you are here to bear witness, to trumpet the truth.

  7. I have so much to say to this. I don't know if it's fear or ego or lack of empathy or too much training or big money power or that we all look at problems differently. I also don't think it matters. You're not going to convince anyone by telling them they're egotistical or fearful or anything like that. All you can do is tell your truth. And it's so helpful when you and others share these first hand experiences. It matters. In the autism world, it is adult autistic advocates expressing what they've been through/go through and why that has been so critical to actually making a difference in the lives of so many others with autism. It's not at the exclusion of science or psychology - it's simply another set of very useful data points for exploration. Your truth - in part, the very specific list of drugs Sophie's been on and seizing and her new periods of seizure free-ness with what she's on now - are facts. You aren't saying you know why. You aren't saying science is bad. You aren't saying give fresh grown drugs to every child!!!! Your truth, by itself, doesn't insult others. What your experience and your facts are is an invitation - you want science to study it, you want the right drugs for everyone, you want research, you want help AND you can express on a personal level what all this has meant for you and your family. Not everyone will accept the invitation, and yeah, I'm sure you'll find folks who are angry with the idea of it. If you put yourself out as the person trying to convince everyone, they have a target. But Sophie's lack of seizures is not a viable target. Your truth is not, either. And if you know that, I hope the slings and arrows can bounce off you a little. Or, you know, I'll buy you a drink or something :-)

  8. I think you're right on all counts -- there's ego involved, and Big Pharma, and a hardcore resistance to anything that isn't data-driven and "scientific." The disdain for the "anecdotal" is so ridiculous. Anecdotal evidence is still evidence.

  9. Here's a quote by Leo Tolstoy I wrote in my journal many years ago because it spoke to me regarding my position on autism and vaccines. I think it fits here too: "I know that most men, including those at ease with problems of the greatest complexity, can seldom accept even the simplest and most of obvious truth if it be such as would oblige them to admit the falsity of conclusions which they have delighted in explaining to colleagues , which they have proudly taught to others and which they have woven, thread by thread, into the fabric of their lives."

    Fight on, Sista!

  10. Here is a study published about the anecdotal evidence...hope its helpful as you try to get the audience to wrap their heads around the possiblity of an anecdotal treatment actually turning out to be effective... which i agree with you is a cause for great celebration.... (but please don't wait for the neurologists to enjoy themselves) Love what Greg had to say and also wondered if you had reached out to Michael Milkin's foundation which has taken on finding cures for chronic conditions ( epilepsy being one of his foundations stated targets) He changed the face of prostate cancer treatment in rapid time and speaks about the obstacles. Perhaps his foundation could be helpful to the cause. Good luck Elizabeth whatever you decide. So enjoying (and privileged) to be following Sophie's story.

  11. This also is our truth, Elizabeth. While Hope is not free of seizures, the quantity is greatly reduced. Our neuro up here in northern CA has the same reaction after studying her and writing prescriptions for 14 years and seeing her complete lethargy. All he could really do was write notes after seeing remarkable changes in her. I had not yet entertained the idea of him not caring. Our girls' cannabis treatments fly in the face of all they believed they could do. That must be unsettling and paradigm disturbing for them. For we mommies, this is a miracle. For our angels to have seizure freedom is a complete life change. These transformations will eventually speak volumes. ♥ we should come in June and support you. Thanks for all you write. You often give voice to my gut.

  12. I love this post, Elizabeth. I am close friends with a woman whose children both have mitochondrial disorders, both of whom are continuing to get worse and worse despite the multitude of physicians and travel to other states to consult experts and the hideous side effects and expense of the pharmaceuticals they are both on. She lives in terror that if she decides to buck the system and look for alternative treatments for her children (since medical marijuana is legal in our state), they will be taken from her just as Justina was taken from her parents in Boston. It is an absolute travesty and yet, the "conventional" treatments have left her a single mother who is completely bankrupt and her children are still getting worse. Your voice is a clarion call. Keep it up!

  13. San Francisco in early June......????? Yay!

  14. Keep it coming Elizabeth. You are making a difference.



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