Friday, July 18, 2014

I could possibly make this another #don'tstarepaparazzi post, but I won't

and let her stare right back at you. Sophie does look a bit weary today, these days -- we're still struggling with a lower CBD ratio oil than we'd like, and she's had a seizure or so nearly every day. We really do think and hope that it's the oil, that once she gets the stuff she had a month or so ago, she'll go back to being seizure free for days and weeks at a time. The good people at Realm of Caring are working hard to help us. Our community learned yesterday that a little one with Dravet Syndrome (the same disorder that Charlotte of Charlotte's Web has) died in New York, waiting for the damn medical marijuana political wheels to move in that state. It's hard to not feel angry or impatient or despairing when children are dying for no good reason, anywhere in the world. That kid with the curly hair, lying contorted on a desolate beach, blood pouring out and into the sand. A child, among hundreds, blown up and out of the sky, landing in bits on this sorry, contested earth. You know I'm not a religious person, and I don't believe that there's a divine reason for every single thing. I believe, most often, in the primacy of chaos -- is there a term for that? I guess you can make meaning out of the chaos, make good out of it or gain some wisdom, let the light of Love in, but it's damn hard not to cling, to desire, to crave -- the root of all suffering indeed. When it isn't a bonfire and smoking hot, anger is like tendrils curling around my ear, edging out my nose as I grow older, at the tips of my long fingers where I grip the wheelchair, laid over the widest part of my foot, bearing, daring, even, the whole thing, my body, to take another step.


  1. You still got that vodka in the freezer?
    Why am I always suggesting that you might need some sort of mind-altering substance? Because I don't have a magic wand, dammit.
    But oh, how I wish I did.
    Kids shouldn't be dying. Not like this, not like that.
    Why we don't all die of the shame of it, the anger about it, is beyond me.

  2. Keep hanging on, Elizabeth. Keep loving and being open to love. The world grieves and another day closes and another opens. I want to rant and gnash my teeth--and I won't. My heart remains open because it is the only thing I know that I can control and the only thing I know that causes no harm. Yes--chaos and form, dancing together on a mobius band. Is entropy the same as "primacy of chaos"? I don't know. I don't know a damned thing except the power of love. We grieve together in love. We are not alone.

  3. "We're still struggling with a lower CBD ratio oil than we'd like"

    What does that mean exactly, medically speaking? Is it not available to you because of the limitations of the law itself or because of high demand of that particular type? Do you mind elaborating? Or did you before and I missed it?

  4. Oh Elizabeth you've just said so much, you've said it all. I don't know either. Chaos gives way to order gives way to chaos, and so on, forever-amen. And love and light, yes. I want so much for you to get the higher ratio CBD oil.

  5. blogzilly: Good question, actually, and I haven't elaborated on it in a while. In a nutshell, though, the Charlotte's Web oil that we get for Sophie is grown and extracted right here through Realm of Caring California, but each batch is different -- that means the ratio of CBD to THC is subtly higher or lower. It looks like Sophie does best on the higher ratio -- but not too high. She is still vastly better than she was pre-CW, though, so I'm not overly concerned.

  6. There's no good answer for what's happening out there in the world. It IS hard not to cling, but it's also freeing and liberating. I try to simply recognize what's happening, recognize the tragedy of it, but cultivate an awareness that I cannot change any of it, except by living my own life in a way that doesn't propagate the chaos. Does that make sense?

    I hope you're able to acquire some of the oil with the more ideal ratio. I suspect this is one of the things the medical people get so up in arms about -- the fact that it's hard to create oil to a medical standard with consistent levels of component chemicals. They're very big on consistency, as you know!

  7. Letting the light of Love in, as you say, plus drinking more, is really the only things to do.



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