I wore my pot socks this morning and sprang Sophie from the facility. We're home now.
I also had an intense conversation this afternoon with an administrative RN from The Neurologist's hospital regarding The Neurologist's statement to me yesterday that she was "under direct orders from her boss not to discuss cannabis medicine." I was lying on my bed recovering from the last couple of days and looking at my feet while "discussing" the issue with the administrative RN whom I will call Karen.
I want to record all of this in real time because the emotion that propels me to write is as essential as giving "thought" to it over time. In doing so I am attempting to break the hegemony of not just the neurology/medical/industrial complex but also of the patriarchy that would stifle emotions or otherwise lessen their validity. This has nothing to do with gender. Part of our power is due to our hearts, our emotions, to what is at stake. Quality of Life. Life. Death. Intellect and reason is another part, but not primary and certainly not dominant.
Break is hyperbole, of course, because at best I will make not even a crack.
Have ya'll ever seen the movie Michael Clayton? If you haven't, you should. If you have, I'm sure you remember Tilda Swinton's character -- Karen -- and Swinton's incredible performance. The administrative assistant I spoke with today used all the hems and haws that we in the cannabis community have heard over the years, and she did it so easily that at one point, I lost my composure and said, Karen! Do you hear yourself? You sound like a robot! I wiggled my marijuana toes and Tilda Swinton's Karen flashed through my mind. I imagined GW Pharmaceuticals to be a sort of Dostoyevskian Grand Inquisitor programming Karen in real time.
Things did not end well. I loudly object to doctors not feeling free to discuss their patients' medicine regimens. I believe, from experience, that the relationship between doctor and patient is sacred and should be one of mutual trust, and that in this instance, in this real time when we are on the frontier of revolutionary treatment for refractory epilepsy, complete transparency is incredibly important. That trust is broken for me, but I'm old. I've been doing this for so long that, frankly, other than the incredible panic I feel every now and then that we are truly on our own, I don't give a flying foo what hegemonic Powers That Be think. If they can't have a simple discussion about my daughter's medical cannabis, or even show a modicum of interest in her welfare, I can't trust them. I worry about young families who need far more guidance than I, and it depresses me that all the work we've done to bridge this enormous communication gap between physicians and families is completely ineffectual.
I will be writing some formal letters to The Powers That Be. I am joining with a few other members of our community in a concerted effort to object to what we saw, as well, on that video the other day where an esteemed neurologist directly told his colleagues to report parents using cannabis medicine on children to Child Protective Services.
There's something going on.
Like Michael Clayton says to Karen, For such a smart person, you really are lost.
