Dragon Mother

up and out

Sophie, painting gifted to me by artist Miriam Feldman

She is so bright and glorious that you cannot look at her face or her garments for the splendor with which she shines. For she is terrible with the terror of the avenging lightning, and gentle with the goodness of the bright sun; and both her terror and her gentleness are incomprehensible to humans.... But she is with everyone and in everyone, and so beautiful is her secret that no person can know the sweetness with which she sustains people, and spares them in inscrutable mercy.

Hildegard of Bingen (c. 1098)

If you weren’t with me right now, I’d be crying, I said to Angela, Sophie’s LVN, yesterday as we made our way up and out of the UCLA medical building parking lot. Why? she asked, innocently, and my mind went back back back even as I replied No real reason, just all the memories and the doing and the weariness I feel. No reason. I just always weep on the way home. I had sought the fresh eyes of a neuromuscular specialist in a (vain) inquiry into how and why Sophie had lost so many motor skills — gross motor, fine motor, oral motor — over the last ten, eleven years, the gist from The Neuromuscular Specialist ultimately being no, we’re not going to do any kind of workup, I don’t think she has anything like that. How the Fellow up there (Angela, Sophie and I were in the car making our way up and out of the parking garage) with the sweet voice (she called Sophie sweetpea) preceded the doctor, explained things in a cheerful enough voice about infantile spasms to me about seizures to me about the effects of seizures to me despite (despite what? despite the fact of me and her) and that’s when I begin drifting maybe after offering yes, I know, yes, I know that, drifting away and inward, the spirals of my mind, up and out and how was she to know that two Fellows had actually diagnosed Sophie in the ER at New York Hospital in 1995 before she was born, how professional those women were how well-dressed how their clipboards were replaced with COWS, how a machine with ink drawing brainwaves onto reams of paper was replaced by a camera a screen a computer loaded up and out. How no neurologist has ever really helped Sophie. How I persist in carrying that weight (self-imposed, self-preservation). How I lost my faith in doctors in medicine in god. How self-aware I am, how stubborn. Who said that the definition of insanity is doing the same thing over and over and over without a positive result? I can’t tell you (Angela) how many times I’ve left a traditional doctor’s office in the labyrinthine complex of buildings at UCLA, generally alone with Sophie after one appointment or another, usually neurology, crying not because there’s been bad news but because I’m a dragon dragging my tail behind me, my tail of years breathing fire yet weighted down dragging it dragging it down the spiral from the street down to the parking garage up the elevator to the Main Plaza over into the 100 building the 200 building the 300 building pushing Sophie in a baby stroller in a handicapped stroller in a wheelchair into another elevator and into one office or another shabby, slick, gray, white, tvs anchored to walls, receptionists typing, entering data, charting, looking up your co-pay is 25 dollars, 40 dollars, 85 dollars would you like to pay that now fill out these forms for me take a seat and the doctor will be with you shortly and then, afterward, back down, down into the garage and into the car and up the spiral and out.

Have mercy, I think, even as fire shoots out of my mouth, licks the air smoke drifts and billows up, out and up up and out.