Asleep: The Forgotten Epidemic That Remains One of Medicine's Greatest Mysteries (4 page)

T
he first cases in Britain proved as idiosyncratic as those in Vienna. The English general practitioner A. J. Hall compared it to the story of Cinderella: “They could not find amongst the diseases of their acquaintance a foot which would go into this newly found glass slipper.” Hall’s first case, a boy, did not seem particularly sleepy; but he did have marked inability to move his muscles. He could barely lift an arm or leg off the bed. Other patients of Hall’s had fevers for weeks at a time or mumbled incoherently or had tremors. Most of the patients, however, showed the same lethargy. It was as if their sleep cycle was turned around—they stayed in a sleepy stupor all day and became delirious at night. Still other patients could sleep with their eyes open, with the chilling appearance of a corpse. Worse, the cases in England were showing a mortality rate over 50 percent, even higher than the death rate in Vienna. Death, the Ministry of Health concluded, appeared due to paralysis of the respiratory system. In 1918, the first year the disease appeared on English soil, there were 538 cases; the number doubled in the coming months. The Ministry of Health also made it clear that “Medical Health officers are invited to take any action which they consider useful and practicable to secure post-mortem and pathological examinations by skilled workers who are investigating this disease.” Public health was of greater importance than individual wishes during an epidemic. The ministry made encephalitis lethargica a “reportable disease,” forcing physicians to inform the government of new cases.

As the disease spread, however, it took on new symptoms.

In a bizarre twist on the lethargy cases, some patients grew hyper-kinetic, unable to sleep. Their bodies twitched and muscles tensed. A broader range of uncontrollable tics occurred. If put to bed, a patient might begin rolling from side to side. A heightened sense of euphoria was reported in some cases and incessant talking in others. In one report, a boy was described as leaping from all fours into the air—like the mechanical toys sold on the London streets called “jumping beetles.” It would have been humorous had it not been for the look of terror on the boy’s face. He could not control himself or stop. As the number of cases increased, one British physician noted that with encephalitis lethargica, recovery, in the true meaning of the word, was becoming the exception rather than the rule.

F
or the first time physicians not only identified the disease outside of Vienna or Paris, but they also realized the symptoms were changing as it spread. By 1918, doctors in England noticed with alarm that the epidemic was exceeding the severity of the previous years. This would prove to be a foreboding discovery.

What began hesitantly as an epidemic in the trenches of French war fields was now becoming pandemic, reaching countries all over Europe. As the United States sent troops over to Europe, the path for the disease broadened once again and struck the one city from which all U.S. soldiers departed and returned: New York.

Encephalitis lethargica would soon spread to countries covering the globe, from Sweden to India, Egypt to China, Australia to Algeria, Uruguay to Persia. And, yet, there were still far more questions than answers about this global disease. In what proved to be unprophetic language, A. J. Hall wrote: “It may be that generations which follow us will see clearly where we can only grope darkly.”

Physicians like Hall, in all their frustration, must have had some faith in future medical discoveries and advancing technology. At one hospital, Queen Mary’s in London, pathologists autopsied some of the fatal encephalitis lethargica patients. They took tiny pieces of brain tissue, soaked them in formalin, and then coated them in wax. The samples, which looked like clouded pieces of ice with a kernel of brain matter in the center, were then placed in a wooden crate, which was stamped and marked as a postmortem sample from that year: P.M.
1918.
Each crate was carried to the basement and stacked on shelves holding other boxes marked the same way, dating all the way back to the turn of the century. There it began, slowly, to collect dust for the next eighty years.

E
pidemiologv literally means “the study of what is upon the people,” and in particular, it implies investigating an outbreak of disease. The complex study includes a cross section of several factors that may or may not seem related to disease, like environment, genetics, food and water sources, seasons, contact with animals and insects, or even the way people bury their dead. It requires a mind that can collect minute details and data, while also being able to see the larger patterns they create. An epidemiologist is interested in not only the behavior of a disease, but also the behavior of its victims. Above all else, what will set a talented medical investigator apart from others is the ability to challenge deeply entrenched theories and see the things others have missed. Often, people are blinded by their established beliefs; so much so that they become oblivious to the obvious.

Hippocrates is usually considered the first epidemiologist. He made the connection between illness and human behavior, finding a kinship between the diversity of life and the diversity of illness. An epidemic, he observed, is just the opposite: “When a large number of people all catch the same disease at the same time, the cause must be ascribed to something common to all. . . . ”

Notable examples of epidemiology include John Snow’s mapping of the cholera outbreaks in London around a contaminated water source; Robert Koch’s demonstration that a germ was
causing
diseases like cholera; Walter Reed’s work with typhoid in the army camps and his demonstration that mosquitoes spread yellow fever; Sara Josephine Baker tracking the case of Typhoid Mary; and Constantin von Economo’s discovery of sleeping sickness.

Identifying the pathogen or its spread is not what led these epidemiologists to triumph—it was their ability to understand the disease’s relationship to a place and its people, because epidemiology’s long shadow inevitably falls on public health. After all, the work of an epidemiologist often has the greatest impact on cities and communities, and the people in those neighborhoods will live or die by the epidemiologist’s success or failure. A true medical investigator has to understand both the organism beneath the microscope and the larger organisms that make up a population. And so the story of an epidemic disease is really just the breakdown of organisms: those that cause the disease, those that suffer the disease, and those that adapt to it.

I
n 1919, in New York City, a large number of people all caught the same disease at the same time. The medical investigators did not know the common cause, and they could not see the microorganism beneath the microscope. But they witnessed firsthand, in frightening numbers, those suffering the disease.

The epidemiologists began looking at the larger organisms in the equation: the victims. They looked for connections among people, in neighborhoods, in what they ate or drank, in how they lived, in their behavior. They examined the relationship between the disease and its victims and the kinship between those victims and the place in which they lived.

If an organism is truly a living system that grows and changes in order to maintain a stable whole, there was one more large, complex organism in the story of this epidemic. It was the city of New York itself.

CASE HISTORY TWO

New York City, 1918
NAME:
Ruth
PHYSICIAN:
Dr. Frederick Tilney

CHAPTER 4

New York City

N
ew York grew faster than any of the world’s largest cities—cities that had centuries and all of history to build their empire. It would grow from a sliver of island where ship masts towered over squat buildings to one with a mountain range of skyscrapers. The science of life and the science of a city are not very different, and a city must adapt in order to survive. New York City did more than just survive; it thrived. The city flourished from its earliest exploration to the twenty-first-century giant it is today.

Iconic New Yorker E. B. White wrote that New York should have “destroyed itself long ago, from panic or fire or rioting. It should have perished of hunger when food lines failed for a few days. It should have been wiped out by a plague starting in its slums.... ” But it did not. The city adapted to and survived each trial.

The city, wrote White, is “both changeless and changing.”

If any one characteristic defined the city of New York, it was the ability to defy boundaries—below ground, above ground, under the water, and into the sky. A modern-day historian wrote that New York was “perhaps the one place in the world where the hand of man shaped the environment as much as the hand of God.”

A
t no time was New York’s progress more obvious than during the first decades of the twentieth century. The five boroughs known today as Brooklyn, the Bronx, Manhattan, Queens, and Staten Island consolidated in 1898 to become one great municipality: New York City. That fusion implied something remarkable—that New York was redefining itself, not only in terms of politics or demo-graphics, but also in its composition.

In the years immediately following consolidation, at the turn of the twentieth century, the world changed rapidly as the Victorian Age gave way to the Progressive Era, and New York would undergo a metamorphosis not only in the way it evolved, but in the way the city looked and felt. New York became more than just a place; it became an inspiration. The island city inspired countless artists, writers, architects, and musicians, who flocked there. The Jazz Age was born in New York. In a sense, jazz was an homage to Harlem and the city itself, an eclectic, complex interweaving of cultures. A pulsing sound that could be both chaotic and brilliantly synchronized at the same time. And it was not just musicians who found the rhythms to capture the city, but also artists, photographers, architects, and writers. Their rapture over the city was obvious in the words they chose to describe it: colossal, magnetic, astonishing, feverish, glittering, an imperial city, the Niagara of American life. New York was even described as poetry itself.

But New York also faced a dilemma most American cities did not—identity. As one historian pointed out, New York City was looking east to Europe more often than west to the rest of the nation. Broadening that divide even more was the fact that 40 percent of the population was from various immigrant, often European, backgrounds. And, as a city gifted in many ways, it was difficult to characterize New York too narrowly—whether by architecture or theater or publishing or finance. As a testament to the multifaceted surface of Manhattan, one guide to the city broke down the “City of Cities” into various sections. At the tip of the island was the “City of Banks,” “City of Fish,” “City of Coffee Dealers,” and “City of Gems,” among others. Moving north, the jigsaw of districts included the “City of Publishers,” “City of Artists,” “City of Theaters,” and “City of Builders.” At the farthest end stood the “City of Hospitals.”

What’s more, the Progressive Era itself was breaking boundaries in a city that had always pushed forward more quickly than any other American metropolis, and technology was altering the way people lived, faster than it would in any period past or present. The cities that changed with the times would thrive; those that did not would begin to die. It was an urban survival of the fittest.

And so by 1918, New York City found itself at a tipping point. The world had been caught in the grasp of the Great War—the momentum of progress gathered speed in New York City just as major European cities turned their focus to war. By the end of that war, New York had replaced London as the financial center of the world. It had replaced Boston as the publishing capital of the United States. With ties to Paris strained during the war, New York department stores and Fifth Avenue shops became the best shopping in the world. And Harlem and the nightclub scene began to place New York at the focal point of modern music. In the coming decade, the introduction of radio would lend a voice to the vibrant image of the city. Radio, broadcast almost entirely out of New York, would carry the stories of the city’s speakeasies, gangsters, socialites, millionaires, politicians, artists, and musicians to the rest of the country.

As the great decade of the 1920s approached, that evolving, modern metropolis was becoming the golden city F. Scott Fitzgerald would write about. New York has often been described as a city of light and dark, and during that time period it was radiant—the same way trees appear brighter when backlit by a storm.

A
wind, cold as quicksilver, swept the length of the sidewalks in New York City. Pedestrians hovered against the walls of buildings and held tight to their bowler hats. The 1917—18 winter was the coldest New York had seen in a generation. In December, all records were broken when temperatures dropped thirteen below zero. Snow blanketed the city by January, killing a large number of trees in Central Park, their ice-laden limbs snapping and cracking. The cold fractured railway lines, froze the switches, and turned coal to solid blocks of black ice. It wasn’t just the trains that were stalled, but also the ships. Dozens sat in the harbor like metallic icebergs bobbing among the floes.