Wednesday, May 9, 2018


I took Sophie to her quarterly visit with Nice Neurologist yesterday afternoon. Here's a caregiver tip: take someone with you when you visit a doctor, and you won't be reduced to your usual Psychotic Visiting The Doctor PTSD Self. Saint Mirtha came with me yesterday, and aside from the tremendous help she provides lifting the 4,000 pound wheelchair into and out of the back of my car and ministering to Sophie in the back-seat, her presence just calms me. I felt less chaotic, less alone, less like the person careening into space on my old copy of Sartre's La Nausée. I'm perfectly capable of doing these things by myself and have done so, but it's gotten very, very old in this the two thousandth and eighteenth year of our lord. During the visit with Nice Neurologist, I did my usual and asked him to reverse places so that I was sitting at his desk on the swivel chair and he sat next to Sophie on a folding chair. So I can better explain to you what's going on with Sophie, I said, and use the time to tell you about CBDA, about how I've been weaning the benzo and what dose you'll need to write a prescription for her at this point. Just kidding with the switching chairs. I used to call these visits with All the Neurologists The $475 Reflex Check, but these days I've noticed that All the Neurologists barely touch their patients, much less check their reflexes. Nice Neurologist is so open, though, and he generally has some interesting information about something or other related to immunology or studies being done on mice or genetics -- information that he doles out in a hopeful tone as it might distantly relate to Sophie in between the schooling that I'm doing. He writes down everything I say about CBD and now CBDA, and when I encouraged him to watch Sanjay Gupta's latest show on opioids and cannabis medicine, we had a healthy discussion about the fuckery of the Sackler family and Big Pharma pushing them on the country back in the day. I think I inserted somewhere in this discussion that I'd die happy if The Neurology Community recanted their stance on benzos, particularly with epilepsy patients, and I remember him looking a bit sheepish (was it the eyebrows or the mouth?) and not acknowledging it. He was, in fact, there to write that scrip for the benzo that Sophie's been on for eleven years and not much else. Sigh. Nice Neurologist is awesome, actually, in the long line of Neurologists Sophie and I have encountered during the last twenty-three years. I'm grateful for his attention even as I'm painfully aware that I'm sort of running the show. I made an appointment to bring Sophie back in mid-July and then wheeled her out to the waiting room to join Saint Mirtha who, when we left the office and went down into the parking garage, helped me put Sophie into the car and lift the 4,000 pound wheelchair into the back, even as the four Grown Ass Male Valets stood watching us, gawking. On another day I might have made some caustic remark to one of the men or even shoved them in my mind into one of the luxury cars out-sexing my Sexy Mazda and locked all the doors. Here's a caregiver tip: take someone with you when you visit a doctor, and you won't be reduced to your usual Psychotic Visiting the Doctor PTSD Self. You'll have a witness to all of it.


  1. yes, a SAINT! Bless her. I think it is a brilliant idea to switch chairs!!! We should all do that! Thanks for the tip.

  2. Sigh. I love that you have Saint Mirtha in your life. And I love that you've found a neurologist who listens to you. Sending you all kinds of crazy love and light and wishes for a tightrope that comes to you when you need it, like a well-trained pet. For valets who marvel at your abilities on the tightrope and throw hundred dollar bills at you as you dismount and your tightrope coils itself up and tucks itself away. XO

  3. That picture truly made me realize that Sophie is a woman now.
    A beautiful woman.
    What I love about my new-ish GP is that he listens. He listens and he respects what I say. Or at least, he seems to. And isn't that what we need? To have a doctor who realizes that those of us who have been in these bodies or tended these bodies for all of these years know a thing or two? To understand that we are not simply paper cut-outs of humans in their office who need only their wise and educated decisions as to our care and treatment? We do not expect them to have all of the answers, we just need them to offer what they have to offer from their position to add to what we know from our position. And to write our prescriptions.
    I love you, Elizabeth. And Sophie, too.

  4. I feel you, mija. For the rest of our lives: no retreat and no surrender.

  5. Another striking picture of this beautiful mysterious woman.

    So, we have to be grateful when a medical *expert* listens. Oh heck. I realise the need to find reasons to be grateful but let's not make too much of it. Well, at least he is somewhat human.
    But my wish for is to find the one who holds Sophie's hands and looks into her eyes and speaks to her because she matters most of all right now.
    When you get there, let's celebrate. My treat.

    Apologies for sarcasm, I have been on this road too long.

  6. I love the switching chairs idea. You should definitely do that!

  7. I am here, humbly witnessing too.

  8. Why was Saint Mirtha in the waiting room? Why not with you and the doctor? She seems to have an intimate connection with you and Sophie.

    1. ilga rauchut — I was giving Mirtha break and the doc’s office is tiny.

  9. Having Witnesses... having anyone with a point of reference... makes it not such an isolated Journey thru The System. I sometimes feel visiting Western Medical Doctors for Conditions they have no Cure for is similar to Dorothy's Journey to see the Wizard Of Oz... and what a sham it all actually was. And once you realize that, it makes it so difficult to go thru the Motions of the endless appointments and no real solutions. Some may Listen, but do they HEAR?

  10. I love you. I love Saint Mirtha. I love Team Sophie.



Related Posts Plugin for WordPress, Blogger...