No one really wants to rage, except when there's nothing about which to do so. My own simmers below the surface of things, beautifully contained. Savory. Hot springs. Remember my story of the neurologist who had called children's services to intercede when several people I know went against her wishes and put their children on cannabis? She also was involved in an alleged "medical kidnap case." She apparently rages, when there's nothing about which to do so. She wrote this piece, posted in the New York Times. I missed it because I was in the fairy tale woods of Hedgebrook, but I read it last night, felt the heat pick up. I picked up Sophie's refill of Onfi today, paid $60 for six boxes of liquid benzo that will, hopefully, be one of the last batches before we've fully weaned her. We've been weaning the drug for the last eighteen months, taking a tiny bit away every six to eight weeks with a predictable array of side effects that hit after three days, ten days, three weeks and then off and on until we hit a steady spot and take away a tiny bit more. We're just over 50% weaned, and we've discovered that adding a few drops of THC each day helps the withdrawal symptoms. I think about the players when I swipe my debit card to pay for the Onfi -- the researcher that figured it out, the pharmaceutical company that made it, the government that approved its safety for use, the neurologist who ordered it, the pharmacist that scraped it into the bottle, the insurance company that determined whether it should be "covered," the parents that pay for it (pay whatever amount it's worth at the moment -- $1,000, $500, $90, $63, $60, free) then fill the syringe with it, the young woman who opens her mouth and takes it, and the brain that bathes in it. It all ends there, in the bloody, wrecked bath. I am reminded, again, of the difference between resignation and acceptance, where they fall on the continuum of rage. I am a master of muted rage, the good girl gone wild only in her head.
And there are few things that feel as cleansing as white-hot rage. You have every right to feel it, and that you channel it into such glorious writing, tender and measured parenting, and fierce advocacy is a gift to us all. Love.
ReplyDeleteYou may not be a rager but you are certainly a fighter, in the best of ways, for your girl. I admire you immensely for that, for getting up each day and walking into the fray. For struggling through the morass until you found what is helping her. Sophie is better, because you fought for her, because you keep fighting.
ReplyDeleteThe rage is absolutely justified. Absolutely!
ReplyDeleteI do understand your rage, and Zupanc is a nightmare. I've wondered if any sanctions came out of that "medical kidnap case".
ReplyDeleteYou channel your rage into action. Those of us who do nothing but spout it out (and I am guilty of this) change nothing. It is so easy to see something causes us rage and then to do absolutely nothing about it but talk and yell or scream or whatever. It is the hard thing, the RIGHT thing, to take that rage and turn it into energy to take action.
ReplyDeleteAnd that article did not make me feel one bit better about Dr. Zupanc.
I remember that horrible move Dr Z made when parents simply wanted their child transferred to another medical facility. Not sure what this article she wrote is supposed to mean or make others feel.
ReplyDeleteWhat ever happened with that little girl? Is she on cannabis oils now? I hope she escaped the medical twilight zone of that the drugs like that Onifi cause. If you saved one child from getting into this mire from which you are slowly pulling out Sophie, it's a major success. I am always hoping that an announcement of sorts or something comes out with cannabis and other such substances getting tested so that they can more quickly become first line meds for seizure control and other children do not have to undergo this tortuous withdrawal to get possible full benefit of something with fewer side effects. Do update us on how that sweet little one is doing now out of the clutches of this doctor and with someone willing to try alternative methods instead of drugging her up. We need to do a major celebration when your Sophie is weaned from the Onfi and a larger one yet, when gentler ways are put into place for seizure control. You are a pioneer as is Sophie in taking these steps on your own with little medical or scientific guidance.
How could you NOT go wild?
ReplyDeleteHow could you NOT rage?
ReplyDeleteI find that she had some gall to put her diagnosis next to that of a child. An example from my own life. My mom died of Ovarian cancer at 65. While it beat me down to a place I didn't know existed it is nothing, *nothing* compared to having a child have, live with and die from cancer.
ReplyDeleteDr Z's insight is lacking. Nay, it is non-existent.
And on a totally different subject. Did you just spend hours and hours playing with Sophie's curls when she was a baby. Her wee baby head is begging for a million kisses!
ReplyDeleteI also tend to keep my rage on the inside. Take care.
ReplyDeleteYour rage is our salvation.
ReplyDeleteYour rage is your motivator. You use it to positive ends.
ReplyDeleteIt's very telling in Dr. Z's column when she says that to many doctors, facts and figures are the key. Maybe she really IS listening more to patients now. One can only hope.
well then maybe now she will listen when the patients' parents tell her they want to use cannabis. you think?
ReplyDeleteHey Elizabeth- I don't know if you've seen this video and story, but it is about a chemist who helps mothers grow high CBD plants to make medicine for their kids with epilepsy. It's on Nate Silver's site- 538.
ReplyDeletehttp://fivethirtyeight.com/features/the-cannabis-chemist/
thought you might be interested.
love,
Scott
You writing is so powerful and completely without artifice or pretension. I applaud you, every time I read your work here. Thank you for this.
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