Quiet Desperation

“The growing good of the world is partly dependent on unhistoric acts,” George Eliot wrote in Middlemarch. Eliot could have been describing the work of our best physicians rather than her novel’s heroine: “And that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs”^[1]. Whatever prestige still remains attached to this profession, a doctor’s life remains mostly a hidden life. And we will, all of us, eventually rest in unvisited tombs.

I had almost no idea what I was getting into when I entered medical school. There were surprises in store, both gruesome and gratifying. During the clinical years, I learned that the physician does what needs to be done for the patient. He may not like it. But he does not recoil or refuse. Much of it was not quite the deft and dignified labor of healing that I had pictured. But eventually, I came to see that a physician’s best work is typically inglorious; it usually passes unnoticed. Litigants are all too ready to pounce should the doctor make a mistake (and sometimes even when he does not make a mistake). Few notice when he does his work well. His successes are unheralded, his failures magnified. I grew to accept this fact and try to live faithfully a hidden life.

Even more than doctors, patients live a hidden life, their anguish often invisible even to those closest to them. Henry David Thoreau claimed that most men lead lives of quiet desperation. I cannot judge whether Thoreau spoke truly in his assessment of most men; but I can think of no better description for the state of so many who lie in a hospital bed. Quiet desperation.

As a medical student, and as a physician, I witnessed intense suffering daily. I could not wholly comprehend it. The weight of pain borne by sick patients was, in the last analysis, unfathomable.

Compassion. This is what we were continually urged to cultivate as physicians. Beginning in year one of medical school, we heard frequent admonitions on the need for empathy, understanding, warmth, and compassion. These words probably conjure a picture of a kind-hearted doctor, one who has a good “bedside manner,” someone who tries to care for “the whole person.” We expect the compassionate physician to feel pangs of emotion—perhaps sadness or grief—for his suffering patients. The compassionate physician will speak to patients in reassuring tones, will perhaps hold their hand, will not abandon them when death is near.

This is all well and good, but it is not sufficient. The Latin root of “compassion” literally means to “suffer with.” We should pause here, for this seems to be asking too much. How is it possible for even the best physician to suffer with his patients? Will he not be overwhelmed by the burden of this task? Is it not better to remain detached, so that he can continue to care for the sick without being engulfed in their pain? I am still searching for answers to these questions after twenty years in practice.

Pain is an unrelenting weight. I have seen it crush strong men and strong women. There were times when it crushed me. I have seen others, who appear frail and fragile, bear its weight serenely, even heroically.

When confronted with heavy suffering, the physician has a choice. He can ignore it, even while acknowledging its presence. It’s all around him in the patients he treats, but should he consider their suffering too long or too deeply, it may begin to crush him as well. Perhaps it’s better not to think about it. After all, he must continue to work, to do what he can to alleviate the patient’s pain. Surely his job is to mitigate suffering, not to suffer with the patient. This seems like the reasonable approach to the problem.

Alternatively, he can acknowledge suffering and grant suffering its full weight. He can perhaps even search for some meaning in suffering. To many, this will sound absurd. But is it? To ignore suffering is to court callousness. To declare that it is meaningless and absurd is to flirt with nihilism and despair. The so-called “problem of evil” has vexed philosophers and theologians for millennia, and doubtless vexed ordinary people since the beginning of time. Perhaps “mystery” is a better word than “problem” for the experience of human suffering.

Like everyone else, I certainly have no easy solution to the problem and have found no pat answers to the mystery. Perhaps here it is enough for me to acknowledge and reflect upon some of the suffering patients I first encountered in medical school.

Among all the tissues in the body, when it is irreversibly damaged, the brain alone does not scar. The brain melts. “Liquefactive necrosis” is the medical term for it. Unlike other tissues in the body, the brain does not harden with injury. It liquefies.

“Necrosis,” or death of bodily tissue, commonly occurs due to an event doctors call an “infarct.” An infarct happens after inadequate oxygen delivery to an organ, resulting in irreversible tissue damage. For example, the medical term for a heart attack is a “myocardial infarct”—the death of heart tissue due to inadequate blood flow, and therefore inadequate oxygen, to the heart muscle. What is commonly called a stroke is in fact an infarct of the brain. After a heart infarct, the heart hardens and scars. After a brain infarct, the brain liquefies and melts.

Mr. Robinson, a fifty-five-year-old gentleman, was sitting on his porch one fine day after work enjoying a beer with his friend. Something unexpected happened. A tiny plaque broke off the wall of his carotid artery, traveled up the vessels of his neck into the vessels of his head, and lodged itself in the root of the arteries supplying oxygen to the front half of his brain. The blood flow to the frontal lobe of his cerebral cortex immediately ceased. Mr. Robinson collapsed.

The frontal lobe lies at the frontier of modern neuroscience. Its function is largely unknown. The other “lobes” of the brain have been extensively mapped to discrete organic functions; their connections to various other body parts are well elucidated. For example, we know that the back of the brain—the occipital cortex—is responsible for vision and visual processing. We know that the temporal lobes are involved in hearing and memory. The movements of various muscles, the sensations of various regions of the body, have been exhaustively mapped to motor and sensory “strips” near the middle of the cortex. Standard textbooks of neurology contain many diagrams with arrows pointing to various parts of the brain, these parts labeled, their functions explained. But few are the arrows that point to the frontal lobe. In neuroscience, it remains the great unknown.

We know the frontal lobe of humans is larger than that of primates, a fact that has led some scientists to affirm that the frontal lobe is what makes homo sapiens unique, what separates humans from other animals. Such metaphysical speculation, although often advanced by scientists, appears to overreach the scientific evidence, which is scant. In what we know of the frontal lobe, which is almost nothing, there is to be found little warrant for this theory. There is a paucity of scientific evidence, and thus, it is an argument from ignorance.

One of the ways neuroscientists have learned the function of various parts of the brain is by observing the loss of function when part of the brain is damaged—for example, by a stroke. There is the famous case of Phineas Gage, a name familiar to every student of neurology. Mr. Gage survived a most astonishing brain injury: after an accidental explosion on the job, a railroad tamping spike went in one side of his head and out the other, impaling large portions of his frontal lobe. The remarkable thing about Phineas Gage, and the reason he is forever inscribed in the annals of medical legend, is that despite the percentage of his brain damaged by the offending spike, he initially appeared to suffer remarkably little motor, sensory, or other neurological dysfunction. It took time for his physicians to realize that he suffered instead from profound changes to his personality.

Mr. Robinson was even less fortunate than the misfortunate Mr. Gage. Mr. Robinson suffered devastating neurological dysfunction. In all the days I observed him, although his muscles were in a state of constant contraction, he never moved. Lying on his bed, his legs were extended railroad-spike straight and scissored together, his right ankle crossed over the left. I reached down to pry them apart but was unable to do so. He was too strong; his contractures would not budge. I managed to squeeze a pillow between his knees. His arms were flexed, also unmoving and unmovable. Awake, his eyes stared into mine. Behind their glassy surface, there appeared to be a distant knowing. It was impossible to tell, however, whether there was any light of conscious awareness left in his mind. I guessed there was, for he always looked as though he wanted to ask something of me. But he could not speak. Another case of quiet desperation.

The brain damage had included dysfunction in “autonomic” centers responsible for involuntary bodily activities like digestion and sweating. How did we know this? The left side of his head was drenched in perspiration, while the right side of his head was bone dry. Down the middle of his face ran a perfectly straight, unmistakable vertical border where sweaty sea met dry desert. The damage to the autonomic center had therefore been unilateral.

“Are you in pain, Mr. Robinson?” I would ask. But it was no use. There was no answer, not a word, not even a look, a turn of the head, a wink, a nod, a wiggling of the finger. Occasionally, he groaned, which is why I suspected he might be in pain. But it was impossible to know for sure. Maybe this was not the groan of a man in physical pain. Maybe it was simply the groan of a man in prison.

One day, a most peculiar thing happened. We were making the daily rounds when we came to Mr. Robinson. We asked the usual perfunctory questions, expecting as usual no intelligible reply. But that day, Mr. Robinson surprised everyone. He turned his head and looked straight at the resident standing next to me. With perfect diction, in a tone so clear that it was unmistakable, he uttered a single word. I should say, rather, he read a single word—read it off of the resident’s identification badge hanging on his white coat. Mr. Robinson said, with raised eyebrows and a look of curiosity, “Neurology.” Then his face flattened, and his mind receded once again, trailing out of reach. In the days that followed, until the day he was discharged, Mr. Robinson never, to anyone’s knowledge, uttered another word.

Neurology. With this one word, Mr. Robinson proved that he could read, he could comprehend, he could speak, he could move. And yet he could not. Or would not? Quiet he remained. Desperate? I think so.

One night, before the “neurology” incident, I was sitting at home after work. My mind drifted to Mr. Robinson. In him, I saw a person with a rigid, mute, half-sweaty body struggling to free himself from invisible chains, from the torture induced by his own liquefying brain. Without understanding why, I was suddenly filled with grief. I wept. Never before in medical school had I cried for a patient, and never since. Which is more perplexing: that I cried for Mr. Robinson, or that I did not cry for the others?

This essay is adapted from Dr Aaron Kheriaty’s recent book, Making the Cut: How to Heal Modern Medicine