My heart's been racing nearly the whole day, and I can't get out of my mind that opinion piece in the New York Times nor the four hundred-odd comments, most of which are push-back. I'm thinking of Blaise Pascal whom I studied and read voraciously for quite some time. I'm thinking of his statement that all of our reasoning ends in surrender to feeling. I am told or feel compelled to be reasonable, yet it's feeling that grips the back of my neck, threads like fish through my brain, brightly colored, still elusive. Is it laziness that prevents me from writing a letter with reason to the paper or a surrender to feeling? Is it ego that compels me to raise my voice and desire to be heard, to be, in a sense vindicated? That opinion piece by Devinsky and Friedman was the proverbial nail in the coffin, as I lay dying. There's no reason, there, only feeling and the feeling is only as desolate as freedom. Freedom feels like doing whatever the hell it wants with certainty, the powers that be be damned.
It' an OPINION piece. yes, they have some chops and yes it's i the NYT but the ruminations in the Ivory Tower rarely change things down on the ground. Besides, is it ever so possible that these authors, like many good doctors, have an interest in pharmaceutical companies that stand to lose gazillions of dollars if this nautral, easy to grow weed is approved. I have no reason to think they do, mind you and I'm not accusing. I'm just ruminating. The Ivory Tower could be tainted. What are they smoking up there?
ReplyDeleteThe letter is already written. It is your previous post. Send that.
ReplyDeleteThis post, the way it crescendoes? Brilliant. And Sophie sleeping next to you, just beautiful.
Sophie looks so peaceful in this picture and you, you look like you have something up your sleeve...if you know what I mean.
ReplyDeleteIt's all up to you but I think you have already created some real ripples that are going to be heard in a lot of places.
ReplyDeleteYou are amazing.
Whatever you decide, as Ms. Moon said, you've already done a lot to move this matter forward. Who can blame you for being overwhelmed by anger -- by feelings? I think you should send in yesterday's post, more or less, maybe with a few tweaks. (I'm not sure the Times will publish the word "bullshit," but maybe they should!)
ReplyDeleteEver since yesterday's post I've been thinking about the idea that anecdotal evidence is less valuable. It's true that it is STATISTICALLY less valuable, but that's not to say it is without value. It drives me crazy that the medical profession won't listen to people, relying instead only on numbers.
Sometimes anger is truly righteous fuel. Sometimes it is perfectly reasonable.
ReplyDeleteI agree with all above. and the line, "all of our reasoning ends in surrender to feeling." Magnificent.
ReplyDeleteIt baffles me – the statement that the placebo effect of the parent of a seizure disorder affected child can be so convincing that it would affect the child. In effect, the Charlotte’s Web would be just another drug in a long line of drugs that a parent has already tried. Are they really saying that these parents simply aren’t placebo-ing enough for the other drugs?
ReplyDeleteI wonder often what it must be like for Sophie to go from multiple seizures per day to weeks of no seizures. Would it be like waking up? It is endlessly fascinating. Thanks for sharing what you share.
I think that when our feelings are dismissed as "unreasonable" or illogical, that speaks to the fear of those who are not in touch with their own feelings enough to let them guide their own actions. I spent far too many years denying my feelings as irrelevant as I steadfastly pursued logic and reason and it was only when I began to understand that my gut reactions were more intelligent than my brain's reasons that I woke up. For people who are self-aware and wise (you, for certain), our feelings are incredibly potent and ought to be revered. You are a wonder.
ReplyDeleteDon't know if you saw this, enjoy your weekend, your Dad and Sophie's seizure free status!
ReplyDeletehttp://www.hightimes.com/read/docs-say-let-dying-children-wait-fda