Friday, May 9, 2014
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