‘Stop Torturing Me’
As is usual practice at the Multi-Service Center, a homeless shelter in the heart of San Francisco, I was sent out to recruit patients from the men’s floor. My goal was to recruit residents with health concerns, triage them, and invite the most pressing cases back to the homeless clinic that operates out of the first floor. I entered the men’s floor, welcomed by lines of dusty bunk beds that hugged four despondent walls.
Finding patients is usually an easy task: shelter residents are quick to spot clinic volunteers, with their crisp white coats and dangling stethoscopes, and freely approach them with concerns. This day was different. Most of the residents were busy watching a film in the recreational room, the rest dozing in their skinny green bunk beds.
I asked the staff member working the floor if there was anyone who had requested medical attention. A burly man, he raised his eyebrows in thought, then shrugged, but then, as if recalling the obvious, said, “ya, there is a weird one over there, who has problems with his eyes.” He pointed to the back room, and led me there.
We reached an unkempt bed, with a man hunched up on it. The burly staff member called out a name. No response. He then proceeded to give the man on the bed a hard shake. The man on the bed jolted and turned towards us. “He’s all yours,” said the burly staff member, and walked away to his post.
The man on the bed looked a mess—hair disheveled, yellow crust hugging his eyelids and the bridge of his nose. His skinny frame was draped in a shirt three sizes too big that reeked with a choking aroma. He motioned to his left eye, which was slightly edematous and streaky red. What was more perceptible was the man’s shaky, disjointed movements as he pointed towards his eye. His hands moved with marked tremors, and his head with sudden jerks. He had minimal control of his body. It was as if his hands were dancing to a slow tune his mind didn’t register. In many ways he was a prisoner in his own body. He tried to speak, but had difficulty. He gargled his words, letting them slowly, but incomprehensibly, trickle out.
I brought the man on the bed back to the clinic for a complete examination. I didn’t know what to make of his presentation. It struck me as a neurological deficit, but the manner in which the disease presented was different from a stroke, Parkinson’s disease, and other common deficits I had learned in school so far. I ran through the months of medical school training, running all the patterns I had learned to exhaustion. Nothing. I then proceeded with what I was trained to do best, which was to garner a detailed history and complete a thorough examination. The history was jumbled, as the man was hard of hearing and had trouble speaking. The physical proved more enlightening. I went through the neurological examination, checking religiously for cranial nerves, cerebellum function, muscle bulk, movement, and reflexes. I concentrated on the muscles—the instruments that give life to our thoughts.
The more deficits I observed, the more fascinated I became. The more fascinated I became, the more detailed my physical exam turned, and the more excited I became trying to identify other problems with this man’s body. I told the man to sit here, stand there, hold this, feel that. He did as told, exerting to overcome the tremors and jerks. I told the man to squeeze my fingers, testing for distal strength. He tried to squeeze, with little strength. I encouraged him to squeeze harder. He tried but could not muster any strength. At this point, the man, with concentrated effort and difficulty, spoke three words that, like a shriek whistle in the night, halted my meticulous exercise of being a doctor and shattered my sense of importance— “stop…. tor..r..r.r..turi…ng…me.”
It was the last thing I had expected to hear. I froze and stood there motionless in front of the man with the tremors and jerks. He wasn’t looking at me—could not—his head would not allow him to stare at anything for too long. I was glad he couldn’t, because I felt cold and ashamed.
As I struggled to regain self-composure, the man struggled to remove a wrinkled scrap of paper from his pocket. His hands lacked fine motor movement, and would swipe at his pocket, hands flopping like a branch withstanding a storm. I reached into his pocket for him and removed the paper. With exerted effort, he motioned for me to read it. I did. It read:
“Hi,
My name is J, and I have Huntington’s disease.”
He then motioned to his eyes.
Everything began to make sense: the man wanted to get his eyes checked out, that was all. It was no surprise to him that he had Huntington’s disease, or that his body was degenerating. He did not need to be reminded. He must have been an object of awe to medical personnel, many, as my preceptor later informed me, likely had never seen a case (the prevalence of Huntington’s disease is 5.7/100,000). He must have felt like a teaching specimen, being worked on, tested, retested every time he went to a clinic—being told to sit here, stand there, hold this, feel that. And here I was doing just that, in the moment of excitement, delving into my own thoughts rather than his, trying to identify a cause for his jerks and spasms, losing sight of the person in front of me, Mr. J.
I put down my instruments of torture—the stethoscope, tuning fork, penlight, and reflex hammer, and looked closely at his eyes.