Asleep: The Forgotten Epidemic That Remains One of Medicine's Greatest Mysteries (7 page)

A few days later, as Tilney had known it would, Ruth’s temperature rose to 107 degrees, her pulse raced as high as 170 beats per minute, and she died.

CHAPTER 6

The Neurologist

B
y the time Ruth died, American physicians had been warned to be on the lookout for an unusual form of influenza that was affecting the brain, but because of the war, their information was stunted. It was impossible to track the epidemiology of a pandemic when the world was at war. The only thing European physicians could pass along was dire news: the disease seemed to be changing as it spread. And it was for the worse. Few things could frighten medical investigators more than the knowledge that their microbial opponent was shifting, changing, evolving—especially one in the brain.

Tilney himself had now seen several cases of epidemic encephalitis—some catatonic, some who died of respiratory failure, some who recovered, and nearly all showing signs of brain damage. Tilney was compiling all of his cases to include in a book that would be published the same year. In his book, he described the various cases and included photographs. The photos themselves have that detached, voyeuristic quality of medical book illustrations. In one, a sixteen-year-old girl with long dark braids is standing naked. Her posture is stiff and her fingers flexed. Her eyes are dilated, their glassy gaze staring back at the camera, and she wears a masked expression on her face. Tilney remarked in the text that the girl would sometimes smile uncontrollably.

In another series of photographs, a man’s face changes expression through four frames. The photos, like all the others, depict the strange statuesque quality of their subject. Though the photos are still-life portraits of people, the immobility of the patients, their bodily prison, is evident even in black-and-white.

And Tilney’s book, of course, included Ruth’s case, listed as fatal.

D
r. Frederick Tilney’s fame in the world of neurology was also just beginning. In the coming decade, his reputation would reach new heights. He would become a professor of neurology at Columbia’s College of Physicians and Surgeons before the age of forty. And he would be the only neurologist ever to treat Helen Keller. She was never seen by a brain specialist as a child, and by adulthood, the public was becoming skeptical. Many thought she was faking her disabilities.

Tilney examined her eyes and found no retina; he tested her hearing and confirmed her to be deaf. Tilney then wanted to test a theory of his—that a person lacking in certain capabilities will compensate with others. He hoped to prove that Helen Keller would be more sensitive than the average person, so he drove her twenty miles or so from her home in Forest Hills to Garden City. Tilney purposefully left the windows rolled down and watched his passenger for several minutes before asking if she could tell him anything about the countryside they were traveling through.

Keller told him that they were making their way through an open field, that they had passed a house with a fire burning, and that there were several large buildings nearby. Tilney confirmed that they were driving through an open field—the road ran along a golf course—and in the distance he could see a cottage with a twine of smoke rising from its chimney. Even the large buildings were there—they were driving near the Creedmoor State Hospital for the Insane. In spite of her astute observations, Tilney was disappointed to discover Helen Keller tested average and showed no extraordinary sense of smell, but Tilney’s tests were also limited. Keller herself would say, “In my classification of the senses, smell is a little the ear’s inferior, and touch is a great deal the eye’s superior.”

Tilney continued his friendship with her, exchanging letters and often visiting her to further test her mind. He once placed a coin in her hand and told her: “This was the one touch of nature which made all men kin.” Without hesitation, she responded, “Pessimist.”

It was his experience with Keller that would lead Tilney to the conclusion that humans were using only a fraction of their potential brainpower, a theory that would become famous in his book
The Brain: From Ape to Man.

Helen Keller was Tilney’s most famous patient, but he treated other prestigious patients as well. Henry P. Davison was a banker and well-known supporter of the Red Cross, and Tilney was treating him for a brain tumor. Tilney once casually remarked to Davison that he would love to study the brain of a porpoise. Davison took his elephant rifle, went out to sea, and brought one back for Tilney. In addition to the trophy porpoise, Tilney studied the brain tissue of apes, rats, reptiles, birds, and fish. One of his more famous animal studies was that of John Daniel, a gorilla in the Ringling Brothers Circus. When the gorilla died, several of the voracious scientists of the Progressive Era wanted to study every part of him. The American Museum of Natural History gave his brain to Tilney.

Tilney’s list of human patients was growing as well; one of his most prominent patients was Adolph Ochs, owner of the
New York Times.
Ochs’s family placed him under Tilney’s care when he showed abrupt periods of happiness and energy, followed by deep depressions, what is known today as bipolar disorder. Another famous patient was Alfred Stieglitz’s daughter, Kitty. Stieglitz, the famous New York photographer, was married to Georgia O‘Keeffe at the time. Kitty, O’Keeffe’s stepdaughter, suffered from debilitating postpartum depression following the birth of her son, and Tilney was chosen as her doctor.

Tilney would also treat two of the best-known victims of epidemic encephalitis during the 1920s. Both cases would lead to significant financial contributions to the study of the disease: one because the patient survived it, the other because the patient did not.

Tilney was becoming one of the country’s experts on epidemic encephalitis. But what he did not yet understand about this disease was that death wasn’t the worst fate. Dying of encephalitis lethargica would not prove to be the tragedy; surviving it would.

CHAPTER 7

The Medical Investigators

O
n February 4, 1919, Tilney prepared for the address he would give as the retiring president of the New York Neurological Society. As he did so, encephalitis lethargica, the disease the medical community was still loath to call epidemic, was spreading rapidly. In New York, health officials bickered over whether or not the disease was accurately diagnosed, much less epidemic. So far, the disease had not even been mentioned in the newspapers. The first article would appear in the
New York Times
in March of that year with a warning from the health department about a new, unexplained disease from Europe beginning to spread.

The war had provided the first opportunity encephalitis lethargica had to crawl across the world with little notice from the medical community. And by 1918, the pandemic flu had given it the second opportunity, stealing worldwide attention, infecting and killing millions. Epidemic encephalitis moved with the flu, almost like a parasite to a host, often attacking many of the same victims, receiving very little notice at all.

By the time Tilney retired from the New York Neurological Society and prepared his closing remarks, the city of New York had lost well over 100,000 people to the pandemic flu. Doctors had fought a losing battle against influenza, but Tilney and other neurologists saw opportunity in encephalitis lethargica. A fellow neurologist in New York wrote about the epidemic, “There has been no occurrence in the field of neurology that has been as illuminating as encephalitis, in that its manifestations may ape practically every neurological entity.”

With more cases appearing each week, and Tilney’s tireless work at improving the Department of Neurology, he was more convinced than ever that New York itself was positioned to lead the world in encephalitis research. Europe was still in chaos after the war, and all of the destruction had slowed intellectual pursuits, narrowing Europe’s scientific lead over America. What’s more, World War I had made the United States a world power, and the flu pandemic had made American medicine a respected force of both public health control and laboratory research. That was precisely what Tilney chose to tell the members of the New York Neurological Society: “This fact should be recognized at once in America as an opportunity for service, the purity of motive being enhanced by the lack of aggrandizing competition.”

Tilney proposed to coordinate all of the neuropsychiatrists in the New York area, and as one medical historian wrote, “This coordination of neurological research ... quickly coalesced around epidemic encephalitis.” Cases of encephalitis lethargica were now appearing not only in Austria, France, and England, but in Russia, Italy, and parts of Africa and Asia. It was as if no corner of the world remained untouched by this strange disease. In the United States, cases were surfacing in major cities all over the East, extending as far south as Texas and as far west as Illinois, and the number of patients was about to triple. But it was New York that saw the highest number of cases, and it was New York that would become the focal point of research.

Another factor made the city ideal to sit at the helm of American medicine. Unlike in many other cities, New York’s medical community had a close association with its public health institutions. Epidemiologists would have little chance against this disease without the tireless efforts of New York’s Department of Health.

S
tanding outside the door of a dank and dreary tenement house to take away an infant with polio, tacking the quarantine notice to a building where a smallpox case lived, sending a tuberculosis patient away to a sanitarium—the work of the public health department of New York City was challenging to say the least. One year, the department removed more than 17,000 dead horses, mules, and cattle from the city; it carried away almost 300,000 smaller animals inside the city; and it inspected nearly 4 million pounds of rancid poultry, fish, pork, or beef. Another year, the
New York Times
published a list of the dead animals that the health department removed from within the city limits: 3 elephants, nearly 6,000 horses, 308 cattle, 11 colts, 16 ponies, 1 alligator, 2 camels, 1 bear, 1 lion, some 50,000 cats from streets or shelters, and even more dogs.

Before plumbing, the health department also handled privies and raw sewage, as well as keeping the Croton aqueduct a clean source of water. Since its inception in 1866 until well into the twentieth century, filth, more than disease, had been the department’s main concern. In the past, the health department could do little more than issue sanitation orders, track disease into certain neighborhoods, and quarantine areas. But that was changing.

Measures as small as coating open water sources with petroleum to kill mosquitoes or providing public bathhouses for the poor or requiring laundry trucks to keep clean towels in public restrooms fell under the jurisdiction of city health. The health department performed tasks as small as inspecting hot dog stands and rounding up drug addicts on the street, but it also had the power for larger initiatives like closing businesses, banning public funerals during an epidemic, or forcing schools to provide open-air classrooms for their tuberculosis patients. The department went so far as to prohibit smoking in certain places—more to address the nuisance of the smoke than the ill effects on health. If smoking was not controlled, health officials warned, there might be a day when smoking would be prohibited in
all
public places in New York.

Since the 1890s, New York’s health department, the best in the world, had battled politics as much as microbial foes and lapses in sanitation. The department was trying to maintain a safe distance from the grasp of Tammany Hall, the Democratic political and social machine that had dominated New York politics for nearly 150 years as a force of reform by way of corruption. Tammany politicians wanted control of all municipal departments, among them public health. But rather than filling the department with qualified physicians and scientists, they gave positions out to loyal supporters, whether or not they were qualified, whether or not they even held an M.D. As a result, several doctors serving in the department resigned and announced publicly that they did so because of Tammany control. In other words, public health was so important, so vital to the city’s progress, that it superseded politics.

Epidemics of cholera and diphtheria in the 1890s put the health department in a role of greater importance and gave recognition to its newly formed Division of Pathology, Bacteriology and Disinfection. The bacteriological laboratory would thrust New York into the spotlight of world medicine and public health. That was a remarkable feat—there were the Johns Hopkins labs, Mayo Clinic, Pasteur Institute in Paris, Lister Institute in London, the clinics in Berlin and Vienna ... and New York’s municipal health department lab.

Out of that laboratory, and under the talented direction of Hermann Biggs, and later William Park, the diphtheria antitoxin would be developed, as well as groundbreaking work on pneumonia and meningitis. The labs and the New York City Department of Public Health became so valuable that as Tammany again tried to gain control in 1918, in the midst of the great flu pandemic, the U.S. government stepped in and forced Tammany to a sudden halt.

The health department’s future success would depend on separating itself from political strings and adherence to the way things had been done in the past, and instead devoting its funds to a more modern approach to medicine and the study of disease. New knowledge about germs and viruses enabled health officials to take a direct approach in controlling the spread of disease, to become active, not just reactive. Their approach was becoming so aggressive, in fact, that it often stigmatized certain ethnic groups and threatened civil rights. That fact would be obvious on Ellis Island. At the turn of the century, roughly 2 percent of immigrants were turned away due to disease; by 1916, it was up to 69 percent.