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.