Thursday, October 24, 2013

Irreverence as a Coping Strategy, or Medical Marijuana Update #1,000,000,000

Parisian Prostitute

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.

24 comments:

  1. Oh Elizabeth, this is such such good news! I will be holding my breath with you and praying for you and Sophie.

    As for the rest - whatever gets you through the night.

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  2. You have knowledge that most of us do not and as such...well. You can say and judge all you damn want to because it's coming from a place of hard-earned wisdom and truth.
    We are all so very, very hopeful for Sophie. She is ours, too, in a tiny way. (And I'm sure you wish we'd come and help you with the laundry, at least.)

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  3. good luck, good luck, good luck.

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  4. I am wishing and praying and hoping with everything I am that this works for Sophie. And if it does I will stand right there on that street corner beside you, or in that fancy house, or wherever, and donate my earnings, such as they are, to the cause. My God, this is exciting. And maybe terrifying, too. Such love, Elizabeth. I send so much love.

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  5. Being a DIY kinda gal, I looked up how to make the tincture, and it is easy but takes 2 months to stew before it's ready! But it might be a more cost-effective way to go if Sophie responds to the medicine. See http://www.hightimes.com/read/alcohol-free-cannabis-tincture.

    Keeping fingers crossed for you and Sophie! (well, and your whole gosh darned family)

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  6. I hope that the high demand will drive the costs down, and that prostitution won't become necessary. I keep hearing more and more miraculous stories - SO EXCITING!!!

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  7. I will be holding you and Sophie up high to the Animal Gods in my heart and in my life and in my awareness on Saturday and I will give thanks without ceasing that this will work then we will find a way to get it to you. There will be a way. I promise.
    love,
    Rebecca

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  8. Long-time lurker, first-time commenter. This post lifted my heart and re-affirmed my own perspectives and beliefs on levels I cannot even articulate.
    I feel such hope for Sophie. I UNDERSTAND the willingness to share your body and its gorgeous sexual spirit and life-force in order to help your dear girl. You have expressed yourself so exactly and concisely, this is amazing writing.

    Big cheers and love for you and yours from cool but lovely Canada this fine morning.
    Mary

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  9. Big hope and support from VT for your family - your deep perspective that comes from experience and your wide willingness for you to do whatever it takes -- BEYOND BEAUTIFUL and INSPIRING.

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  10. High times, Elizabeth! I wait with cautious hope. It hurts to think of Sophie that way, and it is surely far more terrible to see. I can't wait for her to get a turn with CBD.

    You certainly do know things the rest of us don't. For that reason, I've got your back here.

    Sending energy for peace in this impatient time.

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  11. Crossing my fingers that the tincture works for Sophie and that you are able to get as much as you need. As for the Facebook argument, I completely understand how they stick with you for days afterward in some distasteful way. That said, the thing that usually breaks the spell for me is a realization that the other person's anger is generally coming from a place of fear; that somehow I have said something that challenges the way they need to see their world right now to feel safe, and it softens my heart. It doesn't change my mind, but it softens my heart.

    Have a fantastic time at the conference and know that I'm cheering you on from here.

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  12. I'm holding my breath for you, and crossing all extremities. And next time I'm in LA I will order a cake and further fetishize my love of sugar and white flour.

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  13. I'm keeping my hopes up high for you guys. I had a dream this morning that I was in your house playing on the floor with Sophie and Oliver. They were toddler size and Henry was there, his normal size and the house was filled with people. I think they were praying. I don't normally pray, but I'll do so on the off chance.
    love,
    yo

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  14. This is the best news! You must be holding your breath. I am sending you every bit of good energy I have. xo

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  15. Elizabeth,

    I am hoping and praying this works for your dear Sophie. I also completely understand the force behind your willingness to "prostitute" yourself for it, should it work. What a mother will do for her child is glorious. How you express that so articulately is magic.

    Kris M.

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  16. You know what I have to say to someone judging you? This: no one knows what it is like to live your life - NO ONE - not even the people who share your home and your bed. NO ONE travels through your emotional landscape, with your set of senses, your history and your unique feelings and perception of life. I can be judgmental, too - but I am most likely wrong when I judge, because I do not know what the "other" is feeling/seeing/experiencing. Even fellow "cancer parents" or grieving parents do not know how my life feels to me - and even if they did understand in one moment, it changes all the time. So there; people can decide to judge, but no one really knows your life, except you. xoxo

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    Replies
    1. Karen, that was one wise and fine comment stated in your inimitably graceful, spirited way.

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  17. Ahh, what if..... if only.....please work

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  18. P.S. - I hope-hope-hope the marijuana works!

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  19. Oh! wonderful news!! Everything is crossed for Sophie!

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  20. very excited for y'all! thinking of you, eee.

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  21. Hoping, hoping and more hoping.... exciting, terrifying and probably also familiar after 19 years. Did I mention that I was hoping? If this is what works it should be memorialized in some sort of book or publication.. just in case you have one handy.

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  22. Lifting you and Sophie and all who love you in prayer, right this very minute.

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