Phantom Personhood Pain
I don’t hate doctors. I hate the sick system. It’s EPIC, factive and immutable diagnoses that are the “us/them” sick/well. It’s a “patient” Portal to straight to -isms, implicit and explicit bias that actually harms. It’s criminal inequities and Big influencer$ to whom we shall pay no attention (behind the curtain). And I hear that the system sickens doctors, too. It’s exhaustion, though with exceptions, bright spots I greet with gratitude and hope. These stories I share below are a handful of moments, stories of discovery, exasperation, and (dis)empowerment. We can pull back the curtain on power and privilege, ask the hard questions about the culture the continues to enculturate and let’s get (it) together to fight the sick system. I (we) can’t afford not to.
The Attending doctor paused at the door, towering white oak of wisdom rooted in generations of white, wooden men. He hovered at the heavy wooden door with his temporarily Residential sapling. The two lingered by the door to the exam room, body-blocking it. There stood the forest of two, the Resident’s head still bowed in reverence to the Attending wood, quivering a bit and stooped in the presence of the Attending’s Long Coat as if ready to grab and carry the starched train.
He looked at me, from my orange hair to the one bare foot, then to the other foot- besocked with the face of Frida Kahlo on the instep- then looked back up. My body sensed he saw neither my orange hair nor the famed Unibrow on my favorite sock nor the fact of my sock at all. After the looking, the attending held an awkward pose, a pause as if waiting for his tip. I wasn’t sure if I was supposed to bow in supplication, appreciation, unworthy gratitude, simply applaud, or tug at his Long White Coat and plead for the cure he might still be holding in his breast-pocket prescription pad, from which he would drag out a carefully-practiced illegibility, made with the fine slice of his retractable pen-nib, a resort souvenir from one Big Pharma.
I looked down to tear, heavy with resignation. My butt slid off the edge of the black vinyl and down hard onto Frida (on my left) and a half-asleep but somehow still excruciatingly pained foot (on the right.) The papered vinyl of the exam table announced my slump in crinkling fanfare. I imagined the parchment as a flimsy mockery of diploma reading “Conferred the Degree of: Perpetual Patient Loser, PPL” under my sorry bum. The two (Attending and Resident) still planted, united by the door. Finally the Attending, complete with Ego in his starched-stiff, bleached-bland frock, exeunt hallway left. He had left the room to the two of us: the Resident and me.
The sapling Resident swayed a bit, perhaps still in the large wake of his Attending, then turned towards me. “Do you have any more questions for me?” he meekly peeped, knowing the saying of Important Doctorly Things had already been said. He pulled on his messy tie, not helping it become neater at all. He looked a little stunned; frazzled and tired. I had already asked the Attending a lot of questions. His brown eyes darted as if ready to bolt.
He was already turned to go follow his Attending out, already with a hand on the chrome-levered knob. I said, “Yes.”
The Resident, I looked at him, remembering how he had looked at me when he opened with, “What brings you here?”
Two weeks ago I woke up to complete numbness in half my foot, I’d told them. I’ve been falling, and now numbness has turned to severe pain. The Resident doctor had carefully gone through checklists, mumbling visibly but sub-audibly, while taking my history, including the neuropathic pain syndrome triggered in a crush injury to my leg, run over by a car as a pedestrian on a sidewalk. (Charted as elegant? minimalism as “RSD RLE s/p crush.” He’d actively helped distill my non-linear poetry and verbal acrobatics, reaching for descriptors of the strangest new pain, and oddness of new sensations and lacks thereof, from the “mushiness when I step,” “walking directly on my bone,” to “as if beestings engulfed my foot causing it to feel nothing but scorched agony,” and charted only “numbness and discomfort.” During the exam I watched his dark brown eyes, almost hoping that when he felt my foot he could sense the pain through the skin.
He had carefully donned gloves when it was time to touch the foot. I wondered if that were out of disgust; my un-pedicured feet gross compared to my hands that he had held while feeling for strength. I looked at his tie, “M M M” for “Michigan Medicine Maize on blue” in a messy knot, inept or hasty or both. I remembered him explaining what he was going to do with the safety pin he undid from his short white coat, and how he pricked my neck as demo and then my foot with it to measure sensations, and then gingerly deposited it in the biohazard bin on the wall. “Yes, I have a question.” My voice swaying, tears welling behind funky orange glasses atop a self-preserving black KN95 mask.
“Does medicine have to be so toxically masculine?” I asked, and I knew I would need a new mask because mine was becoming a boat for tears.
The snot had begun to flow. Was I feeling numbness? Or as if I were stripped to bare bone. Fleshlessness. I have met this Attending before. Different names embroidered on the same long coats. I have met him in countless departments of medicine from emergency to neurology to GI to GYN to pain management and then some. What is the checkbox for “Drowning in medical muck and trying to scream but trying not scare the patients in exam room 4 across the hall?” “Anxiety.” “Agitation.” “Sleep disturbance.” “Emotional Lability.” “Hysteria.” “Phantom limb syndrome.”
The Resident looked out toward the hall where the swoosh of Long Coat had already sashed to prep for his next oracular moment. He turned back toward me, looking at black piled shoes, or perhaps the nearby caterpillaring, sloughed-off Frida sock. As bright Kelly green it was, even with my hair, it was the brightest thing in the dully furnished, dully (“calmingly?”) painted room. He did not look at my orange hair, nor my green eyes, but as he looked down at the sock, he said, “I sometimes wonder that myself.”
Tremulously, He turned on a heel as if putting out a cigarette and stuffed a hand in the short slit in his polyester white. He had closed the door behind him. Perhaps he was giving me privacy to get my sock back on my glove-worthy grimy foot, or maybe it was an offering—a private moment with Frida. I scanned the mirrorless room to find some image of myself, to distill my tears and commemorate the first day I asked a doctor about toxic masculinity. I contemplated the glare off the crappy decorator art, flowers and puffy sky, but it was too visually busy to find my features in, and Frida the sock was wriggling still in disgust. Finally, I found there was a slight reflection in the sphygmomanometer, where the hose to its BP Cuff hung like a coiled slinky, unendingly cyclic, umbilical cord or noose. On the face of it, the red needle merged with my orange hair. Remembering I am not a number, not even a Medical Record Number, and though numbers pocked my face in this mini reflection. I pulled up my phone to take this portrait and tried to steady a still trembling hand. On the screen, four corners pulsing made an open box in the scene like big square parentheses.
“No person detected.”
Reflections from the Margins
In the hospital again. Trying to maintain a sense of self, autonomous and authentic, they dyed their hair bold red.
The fiery crimson up top clashed with the pale paisley gown and all-encircling “neutrals.”. An act of mini-resistance. Rebellion. Assertion.
The body in pain, seeking help, continued to be swallowed by medical record numbers, diagnoses and problem lists, ICD-10 codes, tests and more numbers.
The tremor created “artifacts,” and there were many extra needles, frustratedly administered shocks. Body illegible despite their assertions that was so much pain, the test excruciating to legs that had been crushed in a catastrophic pedestrian versus car accident 15 years and 2 days prior. Finally, on this day (yesterday) one test notated, (after a grueling examination,) that the body, the pain, was “unremarkable.”
After the exam, the docs left the room to write private notes. Left to change back into the clothes they had crumpled and tucked before donning the gaping tent-dress gown. Instructed to get up off the cot and leave, following the signage.
Instead, dizzy, nauseated and legs feeling lost, they fell out of the exam bed trying to stand on the feet that had been shocked with electrodes and had needles inserted and electrified to test nerve conduction.
And in those moments of lying on the floor, on the cold, “neutral” speckled tiles, crumpled on legs now swallowed in the pain, nerves confused and inert, paisley gown splayed open to the specimen-chill of the empty room, never checked by staff, no call button or cord to pull…
…despite the BODY brought seeking, despite the fire in their hair, despite asserting they were not neutral like the gown that refused to hold its place in modesty, despite every effort toward personhood, they disappeared. Were erased. Swallowed up in needles, artifacts, some numbers, a private note, date of birth and MRN. On the whole specimen, “unremarkable.”
“No person detected.”
ID: A variety of photos taken by the artist of herself, reflected in mirrors and shiny medical surfaces, as well as showing socks, and gloves, and a puppet show very much her own, occupying medical space with her whole embodied self.