Saturday, June 7, 2014

Perhaps This Is Mostly About Mothers


The Golden Orb spiders (aka Banana Spiders) which hatched from the eggs laid by their mamas last fall have grown into gettin'-big mamas themselves and at least five have taken up residence on the swing porch, one right where the biggest one was last year, her web stretched from swing to ceiling.  That's her up there. Right now she is about the size of a silver dollar, legs included.
In other words, still tiny.
But definitely identifiable.
I am looking forward to showing them to the boys who watched with me last year as their progenitors grew and grew and grew and laid eggs and then left.
"'Pider gone," Gibson said last winter, every time we'd go out to the porch.
'Pider back now. Or at least her daughter.

It has been a lovely day of not much beyond the small things. Sheets are clean, bread is in the oven, a little of the garden has been weeded, green beans picked, spiders noted and welcomed.

The best part of today was watching Elizabeth via live-stream from The Epilepsy Pipeline Conference. It will be archived and available to watch if you did not get to see it. The link is HERE. 
I can't tell you how excited I was to watch this. Of course I feel as if I know Elizabeth so well through her words and her pictures but how would it be to watch her as she actually spoke and moved? How would she present herself? Her powerful story?
She was wonderful.

Here's a text I sent to Mr. Moon about it. He was excited for her too. I tell him about her, he feels as if he too knows Sophie and Oliver and Henry. He feels as if he too is somehow connected to her and to them.


God. I was so proud of Elizabeth. There were doctors and experts, PhD's, speaking before her and I listened as they talked about medications for epilepsy, for "rescue medications" for seizures, had their charts and graphs with results of studies about efficacy, side effects, how best to control side effects, dosages, routes of administration of these medications. They spoke of hope in new pharmaceutical developments but it sounded a lot like same-ol', same-ol' to me. 
The man who spoke before Elizabeth, did speak of CBD and he was very positive about it. Spoke of the receptors we have in our brains for CBD which means that our own bodies make these substances, how CBD may work to help control seizures and how it seems to have no dangerous side effects that we know of. 
And then Elizabeth got up and spoke about Sophie and how it was when she was diagnosed and how it's been for her for nineteen years until last December when she first started taking the Charlotte's Web, how please, we need to stop calling it a miracle because it hasn't just dropped out of the sky but is the result of years and years of the hard, hard work of development and testing and growing and the bravery of parents who have taken the situation into their own hands and given their children what is proving to be...well. Fuck. I have to say it. A miracle.
Elizabeth was beautiful and powerful. She sounded experienced and wise and educated and informed and she sounded loving, like a mother, and compassionate, as only someone who has been there can be. She expressed some anger that there isn't more research and study going on. That doctors keep calling things like Sophie's story "anecdotal," cite the placebo effect. 
She was on a panel after her speech and a guy asked the panel if they didn't think that all this attention about CBD was taking attention away from "The Big Picture" of treatment for epilepsy. How people with one-year old children were moving to Colorado because they had given up hope in the medical establishment for treating their babies. 
Elizabeth calmly answered that in hindsight, yes, she definitely would have tried CBD on Sophie at the age of one had it been available and if the treatment doesn't work, you would simply stop using it and what in the world is the downside of that? 

Is it wiser to start with drugs whose side effects are not only powerful but dangerous? To go from them to brain surgery? And then, all hope being lost, to then try CBD? These are my thoughts, not necessarily Elizabeth's, but that's what I was thinking as the man asked his question. 

Well. I think Elizabeth's words were powerful and I think that she is making a difference. She is one of the ones doing the hard work and she always has been. I could not admire her more. 

Mr. Moon is home now, no new-old car in tow. Ah well. He is home and safe and that's what I care about. 

I am watching the chickens strut across the yard for their final scratch-and-feed before bed. It is thundering off in the distance. The bread is baking. The house smells wonderful. A train goes by. Life is happening everywhere and babies are being born and people are taking their last breaths and seeds planted last week are breaking dirt with their first baby leaves and waves are reaching shore and retreating back again eternally, and Elizabeth gave hope today to who-knows-how-many parents, maybe speeded up the whole process of more people who could be helped being able to get that help. Which is, to my mind, something as real and true as the seeds, the waves, birth and death. 

That's it from Lloyd tonight. 

All love...Ms. Moon






9 comments:

  1. 'pider gone. That made my heart swell just a bit.

    Elizabeth was awesome. I was so proud of her. When she answered the guy with the question about the family with the one year old going to Colorado, I was in awe. She knocked that one out of the park.

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  2. Jill- Yeah, she did. She entirely, surely, absolutely did.

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  3. The orb builders haven't started here yet. Soon enough I will be walking into webs.

    Glad that Elizabeth did well.

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  4. I am so annoyed because I can't see Elizabeth's talk -- the stream is blocked because it contains "proprietary content." I swear, lawyers have screwed up the world.

    At any rate, I'm glad to hear she was wonderful. I would expect nothing less.

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  5. Oh, it looks like I CAN get it. I guess that message just shows at the beginning of the talk for some reason. Woo hoo!

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  6. Elizabeth was really great! Bugs of any kind scare me bad. However the top of that spider looks like it is made of jewels. Sweet Jo

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  7. Syd- Expect them any day now. It's always interesting to see which ones will survive the summer.

    Steve- I'm glad you can see it. It's so awesome. I might just have to watch it again.

    Sweet Jo- Many of the things which scare us can have a very, very beautiful side to them, can't they? Even snakes but no, I do not want to get near them. And isn't it wonderful that we all got to see Elizabeth? And aren't we all so proud of her?

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  8. The country house, when we first saw it after it had been vacant for a year, had over a dozen of these beauties with their large was all over the place. We bought it and started coming on weekends. The next summer there were only a few. Now I haven't seen one in years. They moved on, didn't like the activity I guess.

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  9. Ellen Abbott- The number here will dwindle sharply over the next few days and weeks. It will only be the hardiest ones who survive. And I don't take down their webs unless they are really in a place I have to walk through frequently. They catch mosquitos.

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