What we learn from the dying

The room was almost empty when I found him: no relatives, just me and the form in the bed and the ventilator at its side, hissing and chuffing in its stately rhythm. The man's pupils were fixed and midline. Ice water in the ears produced no movements of the eyes. There was no withdrawal from noxious stimuli. I recorded all of this and took the story to the attending.

"Let's go see," he said.

When we got back to the room, his family members had arrived. They stared at us solemnly as the attending began the exam all over again. There was no murmuring this time. Even at the application of noxious stimuli, the entire group — parents, siblings, spouse, children — simply watched us.

When the patient's eyes flew open, I may have gasped. Certainly the family did. The attending let out a satisfied crow: "Did you see that?" The man on the bed was staring, eyes wide. Behind me, voices were rising, uncertainly at first, then breaking into cries of jubilation. I think the attending actually took a little skip in the air before he turned to the bed again. He was busy for 1 or 2 minutes, his hands waving this way and that before the patient's gaze. Ecstatic sounds filled the room.

In their joy, the family didn't hear, as I did, the attending quietly say something that sounded like "Uh-oh." With a guilty sideways glance at them, he turned to me and beckoned. I leaned over. "Look at this." He waved a penlight up and down before the patient. The eyes followed it exactly.

"Do you notice anything?"

Locked in
The eyes had moved. They were clearly tracking. Our patient lived, aware of our presence, probably hearing voices of people he loved crying out in exultation. Yet, despite the precise activity of the eyes, despite all the tumult around us, the patient's face revealed nothing. His limbs were motionless. Not even a finger was twitching.

I looked at the attending. He was staring down at the patient, looking stricken. "My God," he said quietly. "He's locked in."

"Locked-in syndrome" is one of those things you learn about in medical school, not because it's common, but because it's terrible. Every year, when the neurology lecturer introduces it to the second-year class, everyone makes that gasping sound reserved for special cases — the ones we hope we never see ourselves. The man in the bed had suffered a small stroke in the area of his brain stem called the ventral pons. It had cut the connections between his brain and every muscle in his body except the few that make the eyes move up and down. Above the stroke, the mind is awake, aware, as alive as a mind can be. The body below is as inert as death itself. Without the ventilator, he would suffocate in less than a minute. He would never speak, never grimace in pain, never again lift one finger off the bed. Awake, aware, he was buried alive in a body that was already dead.

As I stood at the bedside, looking down on the eyes that occasionally locked with mine, I felt the closest approach to horror I've ever had. It was the absolute absence of expression, I think, coupled with eyes that still somehow signified a living presence, that made this thing so horrible. Compared with people looking death in the face, these living eyes staring back at me were simply intolerable.

As the chorus of voices at our backs faltered, died away, and then, as the attending talked to them, rose up softly in a moan, I had to catch myself to keep from joining in. This was, I told myself, the worst thing that could ever happen to a human being.

Waiting for a miracle
When we returned the next day, the family members were still there, gathered around the bed. We heard them before we reached the doorway. They sent up an excited chatter that rose and fell as if they were spectators at a fireworks display. As we entered, they drew aside. At the bedside a figure in blue scrubs was chanting "there, there, yes, that's it, there." At each of her words, the patient's right hand responded with a wave. And as we reached the bedside the patient's face changed, rearranging itself into an expression I could not at first understand, until I realized the left side was twisting upward into half a grin. The stroke was resolving. We had been completely wrong.

The attending found his voice when we'd left the room.

"You've just seen a miracle," he said. "And now, for the rest of your life, every time you come up against a hopeless case, you're going to remember this guy." He shook his head. "God help you. And God help your patients." I didn't need him to explain. He meant that from then on, I would keep expecting miracles, and they would never come.

He was right, of course. No miracle, nor any medical machinery, is ever going to scrub that word off the wall. But in the years since, I have come to think he also missed the point. It wasn't about miracles at all. It was simply a matter of (as the old vaudevillians used to say)...timing. We hadn't really been wrong. The patient was locked in — as locked in as we all are, in this mortal shell, with only one way out. But the prison door hadn't closed on him quite yet. Knowing as much as we do, spending so much of our time staring at something we don't want to see, under the tension of not death so much as our denial, we had simply assumed the worst.

What I have learned from my patients since that day is that we give death power (as if it needs it) — power not to kill us but to rivet us, to silence us, to drive us from our humanity while we still live. We give death power precisely to the extent that we work to ignore it, to blind ourselves to its closeness, to imagine we have the power to stave it off forever. If we go through life imagining that, then the moment when we are forced to look at death can only rupture everything we know and paralyze us, still alive. That's not a good way to die.

Death may be, as Wallace Stevens has it, the mother of beauty. But it's also a lot like that Krebs cycle: It just keeps happening, whether we pay attention or not. You really can go about your business, as long as you remember that death is taking care of his. Air goes in and out. Blood goes round and round. Oxygen is good. Take care of yourself. And totally Melvin somebody today.

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