Speechless

With Pavlovian impulsivity, I peered out of the charting room. That was the admission bell, the familiar sound of a new patient arriving on the unit. As the new medical student on the service, I strode briskly toward my senior resident, who was flipping through a stack of scribbled notes from the emergency department.

“You want a challenge? Take Charley,” she said, dropping the papers in my eager hands.

In the real world, being on a first-name basis implies familiarity; but in the hospital, it spells trouble.

“Frequent flyer?” I guessed, scanning down a recent discharge summary: “49-year-old gentleman with complicated HIV/AIDS, advanced amyotrophic lateral sclerosis …”

Gulp.

The rest of the chart was full of words that could frighten any medical student: “extensive medical history,” “nonverbal,” “see volume 3 of pt's chart.” His medication list spanned two pages and had me scrambling for my pharmacopoeia.

“Hello, Mr. Stevenson,” I said brightly as I entered his room. The patient was wrapped in a faded gray robe, on which a few bites of his dinner had fallen and stuck. He was a thin man whose frame had once carried a much sturdier build. The skin of his face sagged in places unusual for his age, with patches of gray stubble hiding an angled jaw. Under the plastic non-rebreather mask were two rows of remarkably straight teeth, coming together with each breath.

I placed a hand on his right shoulder and repeated the patient's name.

Like curtains rising on a stage, his eyelids ascended, revealing light blue eyes whose intensity seemed curiously out of place paired with this man's body. He shivered, and a slight moan escaped through the holes of the mask.

“Mr. Stevenson?”

“Call him Charley,” suggested a low, weary voice from the door. She was a compact woman, with broad shoulders and puffy cheeks, hands grasping a large purse that she slid onto the windowsill.

“Charley, honey, you're in your room now. Did you eat?”

The patient let out a high-pitched gurgle.

“Good,” the visitor said, idly scratching his shoulder. “I have to get something from the car, but I'll be back.” Then, as if realizing that I was still present, she added, “And the doctor's come to see you.”

I smiled and extended my hand to her. “I'm Kevin, I'm the—”

“The student, I know,” she said casually. “We get a different one every time. I'm Anna, his sister,” and, shaking my hand firmly, she turned and left the room.

I stood looking at my patient for a minute, watching his chest rise with every puff of oxygen, then noticing mine do the same as I wondered what to do next. How was I going to take a history from a patient who doesn't speak? I thought. Maybe I could review his chart and ask Anna some questions; that seemed less awkward. But with the patient there in front of me, I had to try.

“Um, Charley,” I offered tentatively. “Can you hear me?”

He raised his eyebrows, and I was convinced of a low but encouraging rattle deep in his throat. I pressed on, asking short, direct “do you have any” questions about pain, nausea, and the like. Charley blinked and grunted in response.

Something felt instinctively wrong about the way this interview was going, as if I had broken some golden rule about talking to patients. “Stick to open-ended questions,” one attending physician had advised, “You're interviewing a patient, not cross-examining a witness.” But standardized guidelines work best on standardized patients, and I would soon discover that Charley was anything but ordinary.

***

The next morning, having exhausted my list of yes-or-no questions during an extensive review of systems, I saw the patient's sister walking toward his room.

“Anna,” I hollered, running to catch up with her, “can I talk to you for a minute about Charley?”

She looked anxiously at me. “He's been here so many times, it's probably easier just to look in his chart,” she said with the tone of someone who had been asked too many times about a medical history that deserved its own filing cabinet.

“It's not about Charley, my patient,” I explained. “It's about Charley, your brother.”

Anna considered this for a moment, then followed me to the family conference room at the end of the corridor, its pastel walls and reupholstered furniture providing vague respite from the buzzing and beeping of the wards.

“Just tell me,” she said flatly. “What is it this time?”

This is where bad news happens, she went on. This is where Charley was told he had AIDS, where they had been given his diagnosis of ALS, where she had cried alone because he would never walk again. She turned her gaze toward the wallpaper, which featured watercolor sailboats drifting into a tranquil mist; perhaps these walls had witnessed conversations that had set families similarly adrift, navigating a fog of uncertainty and solitude.

Feeling at once very sorry for her and embarrassed for myself, I explained that I had no such news to deliver and that, as Charley would be in the hospital for a while longer, I hoped to get to know him a bit better. But I needed Anna to help fill in the gaps that a three-sentence social history did not address. Relieved, she sighed deeply and sat down.

Charley was the oldest of four children, with a set of twins coming after him and Anna the youngest. They had lived in upstate New York with their father, an electrician, and their mother, who taught primary school. On the eve of his high school graduation, Charley had declared to his family that he would be dedicating his life to art and moving to the Big Apple in pursuit of his passion. “Our dad just about lost it,” recalled Anna with a laugh, “but deep down we all thought it was the coolest thing.”

Charley stayed in the city through his twenties, occasionally sending his family photographs of his public chalk art or his experimentation with metal sculpture. He was never great at staying in touch, Anna told me.

“Then he shows up at home one Thanksgiving, totally unannounced, with the guy he had been seeing for two years!” She shook her head, her lips curling upwards.

“So you went home, surprise!” I said to Charley later that afternoon, waving my hands in the air. His eyes formed two crescent moons, and I chuckled in reply. It was nice talking to Charley about something other than sleeping through the night or whether the pain was any better. And even though contemporary art was a topic I knew decidedly less about, there was soon no shortage of conversation.

“The last time I did artwork with chalk,” I told Charley a week later, “the other team guessed the word so I never finished my hangman.”

***

Despite the six years between them, Anna shared a remarkably close bond with her brother. When she moved to New York City for college, they would get together frequently, usually near him in the Village, occasionally at her place uptown. “We looked out for each other, we shared everything,” she recalled proudly. “Like when I landed my first job as an editor, or he got commissioned for a new piece. The time I published in The New Yorker.” Then, wistfully, “When he got engaged to—”

“Peter,” I said quietly while sitting with Charley one morning. His eyes slowly met mine, then closed. It was a delicate subject, Anna had mentioned.

“Your late husband,” I added.

As if he had forgotten. They were married long before the politics of what, or who, or where; it was simpler then, when “I do” was enough. I wondered aloud where they had met, prepared to guess at the possibilities. But Charley came through first with a muffled “park.”

“Central Park?”

His eyes widened.

“I was there last weekend!” I shared excitedly, recalling the colorful foliage and crisp air of autumn in New York. Charley seemed to listen with anticipation, his eyes fixed on my face, occasionally rolling back as if imagining the scenery that his hands yearned to put to paper. Sensing his interest, I began painting with words, splashing through vignettes like a kid through rain: colorful beach umbrellas atop pretzel stands; children flying paper kites on a grassy knoll; the duet of cooing pigeons and an annoyed cyclist's bell. Charley's fingertips twitched, and his fists clenched around the towel rolls; he was due for the antispasmodic. But I allowed myself to believe that in this moment of shared memories—for me, of my weekend in the city, and for him, of a different life, another time—a burst of glutamatergic reminiscence had navigated his withering peripheral nerves, aching for expression, demanding release.

I was spending more time each day after rounds with Charley. “If anyone needs me, I'll be in room 224,” I told my resident one morning.

She gave me a puzzled look. “What's going on in 224?”

“Just going to talk to Charley.”

“Charley?” she repeated, incredulous. “But he doesn't say anything.”

I smiled. “Not in words, no. But we talk.”

***

As weeks became months, our conversations grew livelier, but Charley did not. The hums and grunts of pleasure that had once punctuated his routine administration of “Wheel of Fortune, q.h.s.” faded in both frequency and meaning. His breathing became labored, and his immunity lost ground.

I found Anna sitting at the bedside one afternoon. The clock read just past four, but already the unrepentant darkness of December had cast itself over the frosted windowpane. She smiled weakly as I leaned against the radiator. Her hand, adorned with red and green nail polish, was clutching his, bound in paper tape like a hastily wrapped Christmas present.

“He's not getting better,” she concluded gruffly. This was the way Anna usually spoke, as if having the final word. Today, as the medical team had known for many days, there wasn't much to add. Charley's eyes peeked open at the sound of her voice, then slid closed again.

“We knew this would happen eventually,” she declared. There was a thoughtful pause, then I shuffled toward the door, allowing them their time together. But Anna continued.

“I mean, you can't go on forever, right?”

Her voice broke, and a rare fragility emerged.

“When he got sick in ’86, it was like a dream. Well, a nightmare, but a dream because everything was in a haze, like time was on fast-forward and reverse.”

Charley coughed softly; I wiped the dribble away.

“And then they invented the magic drug, and it was like someone lit the world on fire. Charley was painting again, Pete got healthy and went back to work. They moved uptown, closer to me. I had my two boys then, and no one loved them more than their Uncle Charley.

“It was as if God had given everyone another chance.”

She let out a big breath through her nose.

“Pete died in ’96. He got sick again, and they tried the newer drugs, but it was too late. Charley was there with him in the hospital, every single day, holding his hand, right until the very end. It was December, just like now.

“I came to the hospital one night right after work. Peter was already gone. Charley and I sat in the room for hours, just holding each other. And finally he looks at me and he goes, ‘Who's gonna hold my hand when it's my turn?’”

The infusion pump pierced the silence with its steady alarm. “Infusion Complete,” read the display. I slammed my thumb on the keypad, willing the sound away. The patient had finished another liter of the therapy he needed; yet in this moment, nothing seemed further from what Charley truly wanted.

“When he got diagnosed with ALS two years ago, it was just so unfair, you know? Like, having one thing isn't enough? He couldn't walk anymore, so we moved him up here to be closer to me.”

“And since then?” I asked.

Anna looked lovingly at her brother. “Since then, it's been day by day. We made plans, of course. We had the long talks when he could still speak.”

I was curious about the long talks but hesitant to ask. Anna read my mind.

“Like how he wants it to happen, when he can't breathe on his own anymore, or he can't swallow his food. We promised his neurologist we would have the talks.”

“Was that hard on you?”

“Well, it wasn't easy,” she added quickly. “They didn't have this kind of thing when Pete died. At least no one said anything about it. It was chaos, and that made it worse. I'm not saying having a plan has made it any easier to cope with the changes …”

She gently massaged Charley's contracted fingers.

“But at least he knows, and I know, that his wishes will be respected.”

She leaned in and kissed him on the cheek.

“Anyway!” she said suddenly, sitting back in her chair, “I think we'll go home tomorrow, won't we, Charley? Won't it be nice to be home again?”

He blinked several times. Anna smiled broadly as she wiped her eyes.

I nodded, not in approval, but appreciation. What an extraordinary honor to have cared for this man, to have peered into his world and followed the history of illness through the phases of his life. On my personal and professional journey toward caring for patients, Charley had illuminated the path toward caring for humanity. His was the story of living, and dying, and the promises made along the way. And though I was the one speaking the words, he was the one who always left me speechless.

I said my last goodbye to Charley in the usual way: sliding my right hand into his and shaking twice. He never squeezed back, but like the time we had spent together, nothing was expected in return. Replacing the towel roll, I leaned over the rail to meet his gaze.

“Thanks, Charley, like always.”

Two blinks, like always.