Abstract
Archie was signed out to me when I entered onto service my last month. He'd been neurologically devastated since birth. For over 18 years his existence had been far from normal. He couldn't walk, couldn't talk, did not know how to sit up or to play, and could not interact in any personal way. He was moved from his wheelchair to his bed where he would lay or sit all day. He appeared to just be waiting for something to happen to him, and the only thing that happened was he'd get sick. His muscles were weak and underdeveloped, his tendons taut from years of misuse. This made his posture awful. Scoliosis curved the edges of his spine, and his arms and legs were bent and unnaturally stiff. He'd remain in this funny flexion every morning I rounded on him. Because his lungs were squeezed into the tight corkscrew cavities of his chest, he was constantly plagued by pneumonia. His breathing was often labored and he'd sweat and heave. Unrelentingly high fevers would spike in him daily, needing days to weeks of high-dose antibiotics. Even with antimicrobials flooding his system, we couldn't cure him.
“Archie, what's wrong?”
When I assumed his care, he was plagued daily by phantom pains that had no location or cause. He would moan, this sad sound with a pitch that intensified throughout the day into a chorus of shrieking screams. His guttural utterances would fill the hospital halls and drive the nurses mad. I'd be at his bedside every minute I could spare, my pager going off as incessantly as his shouts. The two sounds together formed an awful melody, playing out an intern's life at the hospital.
I'd lean over his contorted frame with my stethoscope, listening intently to his heart and lungs. I'd systematically explore his body for bedsores, rashes, broken bones, and ear infections. I searched for anything that would explain his prolonged discomfort throughout the day. Yet, all the tests I performed turned up negative, and I was pulled into his agony.
“Archie, where does it hurt?”
I could never find an answer to his private pain, and my head and heart both ached. So I would stand frustrated and defeated by the side of his bed. How do you work with a patient who can't communicate with you? who physically and mentally doesn't resemble anyone you know? How can you care for someone like that?
I consulted multiple specialty services asking for help, and none were pleased to see Archie. They all knew him from prior hospitalizations, but still no one could say what ailed him. So we used Valium to help with the agitation he was experiencing. Were we masking pain with medicine? Or did he really need something to relax the fried neurons clinging together in his skull as a brain? Either way, we needed to believe medicine could save him.
After a day on the sedatives he started to relax. His moans became babbles and occasionally a smile would cross his lips. He grew content in his bed or his chair as he waited to be moved between the two.
“Do you feel better Archie?”
He finished out a prolonged course of antibiotics and was finally stable to go home. I held his hand on the last day he was in the hospital. His eyes darted widely around their sockets, never fixating on anything in particular. He sputtered and smiled, his tongue rolling out of his open mouth. His body shook with what seemed like laughter, but what we had proved to be uncontrollable sets of seizures.
“Did I cure you Archie? I don't think so. I still don't understand you. You have shown me a different side of humanity, one that transcends any degree of what I perceived as normal. When I think about you Archie, I'm still angry. I have a selfish desire for closure. Can you look at me and tell me that I helped you in some way? Instead you've left me feeling drained from our time together. I am trained to find answers, not to be left with more questions. What did I learn from the delicate simplicity to how you live and feel? I now have to contemplate the unending complexity of the human body and brain alone. Do you know how much you challenged me?”