Tuesday, September 6, 2016

THC, Baby

Sophie in West End apartment, New York City
1997


The tiny little mother mind™in concert with several other tiny little mother minds™ thought that a small amount of THC, given during a particularly prolonged cluster of myoclonic jerks that might and probably would have culminated in a large and violent generalized tonic-clonic, might do some good.




Mark this space.















I'm going to admit that my hesitation in typing out anything positive is borne of a centuries old superstition that probably exists in most cultures and certainly exists in the southern Italian ones of which I am a descendent. By uttering something positive, I will jinx it and something bad will happen next. I think it might be called Murphy's Law for the WASPs among you. In modern times this might be called being a control freak or maybe even narcissistic and certainly egotistical and self-absorbed -- as if my every action and thought could influence the outcome, good or bad, or that it's all about me. That I don't believe I can jinx the good by typing out the bad is evident in the number of "bad" posts I have on this here blog, but remember my tiny, little mother mind™ and cut me some slack.

I know nothing and I'd bank on you knowing nothing, too, at least as far as why the hell Sophie's brain is so damn dysfunctional. I feel like I have to mark the positive, though, if I'm going to truly live in the present and be optimistic and cheerful (as per my I Ching reading).

Anyway, I gave her a little blip of THC during the cluster, and do you know that the seizures stopped? It wasn't immediate, and an argument could easily be made that they would have stopped eventually. That wasn't even the mind-blowing part, to tell you the truth. What happened was that the veil over her eyes was lifted and she looked clearly at me and smiled. She kept smiling, too, for the next few hours, off and on. She also had no clamminess and stopped drooling. Clamminess and drooling are two things that strangely literally break me. It's like they're superficial manifestations of the whole damn clusterf**k, and I feel broken, literally broken, when Sophie is clammy or drools excessively. I just know that she's deeply miserable and uncomfortable. After the couple of drops of THC, though, she looked brighter and definitely happier. Her palms were dry, and she stopped drooling. She seemed really, really comfortable.

Was she stoned? Perhaps a little bit, but that's okay.

THC, baby.

I write a lot on here about the effects of Sophie's seizures on me and our family, and I might not often convey how anguished I feel about the effects of them on her. I'm thinking of it, though, all the time. While there's a certain amount of dissociation for me which I imagine is a survival technique, the border between Sophie and me is very thin, a scrim, really. I believe that comes from the two of us being a kind of extreme parent and daughter. Sophie is completely and utterly dependent on me in the same way that she was as an infant. She's also powerfully herself, imbued with an evident grace and intelligence that people have remarked upon her entire life. This doesn't mean that our identities are blurred as much as it means they are fluid. That relationship is one that I know other mothers and sons/daughters like us struggle with -- it's the cause of much anguish, of marriages and family relationships broken, but it's also something precious and wondrous and rare.

I gave Sophie a bit more THC again later in the weekend, and the same thing happened. I might be on to something, and despite my superstitious nature, I'm going to keep you posted. Don't forget that we are on the frontline of this medical cannabis revolution and that the Powers That Be are taking their sweet time, mired in politics, money and party lines (we need more research). It's harrowing, but we on the frontline have to not only tinker with dosages and tweak products and strains but do it without the approval and sometimes with the indifference of those Powers That Be. Just the other day at The Neurologist's office, after suggesting for the 5 millionth time that I consider the VNS, The Neurologist said, I know you really only like to do the natural thing, though. It was tiny, but it was a sting, and given how difficult and complex this whole medical cannabis journey has been, I couldn't help but feel the great extent of my tiny little mother mind.™ The Powers That Be are going to do things in the way that they've always done them, though, so in the absence of real partnership, we're going to do it on our own. It's highly individualized. Ironically, though, the scrim between Sophie and me is probably the single most powerful help I get when I'm faced with crisis, and it works both ways. I know when she's comfortable, and I know when she's not.

THC, baby.

24 comments:

  1. God knows Sophie deserves any little bit of good feeling and release she can find. A little bit stoned sounds like a welcome relief from the last few weeks.

    How exactly have you only liked to go 'natural' over all these years? Hasn't she had all the drugs they offered from the start?

    So, I'd like to hear more about the VNS - I've read about it for anxiety and autism too, and I've a vague memory that there's something you can do... is it surgically? Because most of what I've seen says dunking your face in ice water a couple times has the same effect - but I'm sure you're way ahead of me on all that.

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  2. That comment- about you only liking to do the natural thing- made me want to jump through the screen, the universe, across the country, into the planet of that doctor and grab her by the throat. As IF you haven't done everything of every type that could possibly help your child short of opening up her body, her head, to either cut nerves or implant devices or whatever else that/those surgeries are. Does she not have the LIST OF DRUGS AS LONG AS HER ARM that you've tried?
    Ugh, ugh, ugh.
    Listen- this is just my opinion but if Sophie is comfortable and happy when she's stoned then get that girl stoned. Drop that veil from those beautiful eyes. And let her mother's beautiful eyes shine with the relief.

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  3. I am really happy to hear this news, Elizabeth!

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  4. This is wonderful Elizabeth! You've inspired me to move forward and give another CBD strain a try. Soon.

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  5. Ugh @ the natural thing. Really really condescending.

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  6. Doctors don't like "the natural thing" because it destroys their world view. And that is all they've got to hold on to, when faced with the failure of drug, after drug, after drug.

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  7. I. Love. This. And I think that the more you listen to your instincts, the better off you and Sophie will be. I am delighted that you found something that alleviated some of her suffering and if I remind myself to stay in the moment and appreciate it for what it is, it doesn't matter as much whether it will prove useful again. It is enough, for now, that it worked this time. (Although, I fervently hope that you are on to something and it proves useful over and over again) THC, baby. I love the image of Sophie smiling at you. You go, mama.

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  8. What fascinating results.

    I'm not really a fan of the term microaggression, but from your
    accounts of that neurology appointment, the shoe certainly fits.

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  9. Yes, to everything Mary Moon said.

    THC, baby! If it makes her happy and comfortable, do it!

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  10. Do what you do!
    I really hope it's going to help her turn the corner....you've got a lot of smarts in that tiny little mother mind of yours!

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  11. First, I adore that picture of Sophie. You can still see that little girl within her even today.
    The interpretation of Fluid Identities,and that such a way of living is full of anguish and wonder and so very rare is crystal clear in describing the way you and Soph live. Such a sacred place to be.
    I love your ability, Elizabeth, to let the words and the thoughts flow through you until you find just the right ones - and you did.

    And I also love the fact that the THC helped Sophie. Give her a break from the single rutted road that she must feel she is on, open it up with a little bit of help from a miracle plant. Something simple helping something so complex. It's called high for a reason. I hope you keep it up in whatever way you feel is best.

    And perhaps a tiny bit of THC would be good for you, late at night when you're thinking too much. Just saying...

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  12. SO good to hear! Medical marijuana was finally legalized here in NJ. One more tiny step forward-granted there are many leaps left. Hopefully this will help other families!

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  13. I'm so very glad she got some relief (and you, too). The photo above is adorable, with her gay little outfit. About the evident grace and intelligence, I see it in almost every photo you've shared. It's always been there for me - she also has a timeless, classical look.

    I love your writing. This post is exquisite.

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  14. Sometimes you wonder what these medical experts did during their first years of study. What is natural and why should it imply something less worthy of attention - is there a competition between natural and artificial? What are drugs made of? Etc.
    Your Sophie deserves the best, the absolute best without labels or condescending "expert" definitions.

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  15. Everything about this resonates with me- but nothing more than the "scrim" between a mother and her dependent child. It's such a rich and complex relationship. The necessity and love and communication at a visceral level add up to so much more than their parts. That is the "natural thing" and I'm so glad it lead you to THC and some relief for sweet Sophie.

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  16. When my mom was at her sickest with ovarian cancer, when chemo and radiation and surgery that knocked her down so hard she couldn't lift her head off the pillow, my dad made her peanut butter toast with pot he had grown in the backyard. She never knew because she would never have agreed to it. It was the one time of day when she had some relief. The one time of day when she didn't feel excruciating pain and nausea. If she deserves to be a little bit stoned, and she did, Sophie, more than anyone, deserves some respite. And to all the naysayers, I ask what the difference is in taking a highly addictive Ativan? Until you see someone you love sicker than you ever thought possible don't make judgements on what is right and wrong and what you will do to take away their suffering. I want to add a note saying I was totally against any form of marijuana use before my mom got sick. We live and learn. I hope.

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  17. You and Sophie are at the leading edge. The veil lifted from her eyes and she smiled. Oh yes. That.

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  18. I bow to the Green Goddess who brings healing and relief to so many. For Sophie. For you.

    XX Beth

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  19. I bow to the Green Goddess who brings healing and relief to so many. For Sophie. For you.

    XX Beth

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  20. Whoa that's amazing. That you get so little support and encouragement from the big ass science minds though is amazing too.

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  21. Elizabeth I'm SO HAPPY to see this post. I know more and more families who have had pretty good effects with high CBD switching to THC with even better effects. Fuck taboo.

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  22. I'm finding this Post to be so uplifting as I've considered medicinal MJ for both The Man's TBI and PTSD and also for The Young Prince's Serious Mental Illness, as I have heard it does wonders for so many forms of disabilities and ailments, with proven results that naturally are being downplayed by the big pharmaceuticals since there is no money to be made in helping people be Well. Lack of encouragement or support are something we know all too well, we mostly muddle thru on our own and make it up as we go along. Blessings from the Arizona Desert... Dawn... The Bohemian

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