So, I've been keeping a secret. The other day I connected to a wonderful woman whose son also has epilepsy and who shares the same neurologist as Sophie. The Neurologist actually told her to contact me because she (the woman, not The Neurologist) has been using CBD for her son and is seeing positive effects. We've talked on the phone and on Facebook, and guess what? She has a grower in northern California who has a tincture of CBD/THC that is 20:1, and this grower will be traveling down here this weekend for a big news conference about CBD and The Realm of Caring (that group featured on the CNN special Weed) coming to California and I will be getting a bottle of the tincture as soon as this week to try with Sophie.
Did you get that?
This week might be the week that Sophie responds or doesn't respond to medical marijuana. Now, this isn't Charlotte's Web, so I'll still have that to look forward to if this product doesn't help, but I tell you what. It couldn't come sooner. The last few weeks have been some ugly ones for Sophie. Right now, she's lying open-eyed in bed, simultaneously wired up by seizures and dulled down. It's impossible to articulate what that exactly looks like, but it isn't good. Her palms and feet are clammy and dripping with sweat. She has a strange body odor and keeps jerking and periodically going into a full-blown tonic-clonic episode. When she gets up off her bed and walks around her room, she'll stand confused in one spot and then fall over like the proverbial tree and just lie there. She looks pitiful, and if my heart weren't already smushed and smashed, it would be cubist.
We're ready to go.
The Realm of Caring news conference is public, and it's going to be in Glendale on Saturday. CNN will be there. If you want more information and live in California, please email me at elsophieDOTgmailDOTcom. Evidently, Josh Stanley and Paige Figi (the guy who runs the farm that grows Charlotte's Web and Charlotte's mother, respectively) will be there to announce and discuss the upcoming availability of Charlotte's Web in the golden state. Those of us on the waiting list for Charlotte's Web will learn when and how and how much.
Which leads me to the irreverence part of the post. A bottle of the 20:1 tincture costs $100 and a tub of high CBD butter costs $300, and that's less than a month's supply. That's a lot of money, and I imagine Charlotte's Web products are going to cost this much, too. I told my friend Jenni tonight on the phone that I'm not balking at the money. Obviously, if it doesn't help The Soph, it's money lost and there's been a whole lot of that over the last nineteen years (and that would include the hundreds of thousands spent on shitty insurance coverage and drugs that aren't covered and that don't work). If it works, though, and Sophie's seizures are dramatically lessened or -- dare I hope it -- eliminated -- I'm willing to prostitute myself. I told Jenni that surely there is someone out there who would pay me money for favors. There's a partner for everyone, no? I'll even take on a fetish if that helps.
The other day I got into an argument on Facebook with one of my friends and with a few of her friends, who I didn't know. The argument was silly in the realm of things that I contend with -- it had to do with vaccinations and trust in science and pediatricians, mine in particular, and words were flung around. There was judgement (which is fine because I do my fair share of it) and there were sharp and rude words. It's been bothering me a bit here and there since, mainly because I think this young woman is a fine writer and a fine mother and I really enjoyed our pretty superficial friendship, and while I can't really understand why she'd jump on the reductionist bandwagon that she's chosen to leap onto, and even perpetuated, I have realized this week that when you're willing to become a prostitute or help someone with a fetish in order to get money to buy a substance that will help stop your daughter from seizing every fucking day of her short life -- well -- in addition to being desperate, you know something that she doesn't. It's irreverent, but it's complicated.