Asleep: The Forgotten Epidemic That Remains One of Medicine's Greatest Mysteries (17 page)

Over the next five years, 114 children lived in those cottages at Kings Park. And they would soon serve as guinea pigs in the vaccine trials in the coming decade. After all, without hope of a vaccine or cure, the children had little or no future ahead of them. Those children at Kings Park proved to be the lucky ones. For thousands of other children damaged by epidemic encephalitis, there was no asylum, no serene solution to their madness. Many ended up in prison or juvenile homes. In a sense, they did die of acute encephalitis lethargica. Their bodies remained, like a ghostly shape of the children they once were, but their minds were horrifically changed. As a British doctor explained, “When the child’s personality changes so dramatically, they’ve ‘lost’ the original child forever.”

N
europsychiatrists in New York had been so focused on the epidemic of encephalitis itself—studying it, diagnosing it, treating it—they were unprepared for the blow it dealt them
after
the epidemic had subsided. Jelliffe had already experienced psychological changes in his patient Adam. Tilney, too, had started seeing patients, children, affected by the epidemics.

On a cold December night, both doctors made their way up Fifth Avenue to the New York Academy of Medicine to hear a lecture on that very subject. Nothing could have prepared the physicians for the case they would hear about that night.

CHAPTER 16

Rosie

J
elliffe and Tilney sat in the deep red, velvet chairs of the auditorium. Outside, it was cold, and frost powdered the front steps of the building of the New York Academy of Medicine. Across the street, in the early moonlight, the tree branches of Central Park reached like talons toward the nighttime sky.

The footsteps could still be heard in the chilly atrium, as well as the muffled voices. Overcoats, hats, and gloves were checked; snow was kicked off shoe heels. The physicians filed down the stretch of red carpet into the auditorium for the meeting of the New York Neurological Society.

Tilney had served as president a decade before this night. Both he and Jelliffe had been on the main council of the society for years. Tonight, they sat in a room smelling of damp wool suits, tobacco smoke, and musty seats to hear the president of the society give his lecture. S. P. Goodhart, also a longtime member and someone who had served for years with Tilney and Jelliffe, was giving a talk about an unusual patient of his. This was not the first time epidemic encephalitis had been brought before the society. As early as 1919, it appeared in the minutes of the group’s meetings. Following that, it had appeared intermittently in the programs. An entire evening had been devoted to the subject.

On this cold night, however, the tone would be different. All of the neurologists present, more than one hundred of them, had most likely seen cases of epidemic encephalitis. Many had watched the long, silent slumber. Some had seen the chronic symptoms beginning to emerge. None had seen a case like this one. Dr. Goodhart climbed the steps to the stage and stood before the lectern to tell the tragic story of Rosie.

I
t is not known which doctor at the Neurological Institute originally saw Rosie; it could have been any neurologist on the ward that day. What the doctor would have seen was a pretty girl, her dark hair cut into a pageboy, with a frame as frail as bird bones. Her thin legs turned in slightly and her shoulders slumped forward. She looked, as many teenage girls do, caught in that lapse between childhood and womanhood, unsure of what to do with her new, longer limbs.

She had actually been seen in the institute five years before when she was just a child recovering from a February case of the flu. It was not pandemic flu, just a normal strain that circulated, and still does, each winter. Her record filed at the institute was vague, denoting fever. A diagnosis of her case was never clearly noted in the hospital records. Her case report, given by her mother, described a very normal and healthy child. She had the usual bouts of measles and chicken pox, the usual bumps and bruises as a child. She started school at the appropriate age and was described as well liked, sociable, and clever. Little else is known about her personal life. Her mother appeared to the doctors to be an intelligent, concerned parent.

The only unusual thing in her case history was the fact that her eyes had grown weaker, causing her to have trouble reading, her left arm had drawn up against her chest, and she had started walking with a limp. To Rosie’s family, the symptoms were a nuisance; to her neurologists, they were indicative of a breakdown within the brain. In such a complicated wiring system, one failure in the brain will likely have a domino effect. Rosie’s symptoms signaled that the dominoes were beginning to fall; what the doctors didn’t know was how ruinous the collapse would be.

By the next year, Rosie’s physical complications were growing more apparent, and she was taken to Mount Sinai Hospital, where she was diagnosed with Parkinsonism, a diagnosis fast becoming the norm for most postencephalitics. It was also noted that her pupils were unequal. Though both responded to light, the right was larger than the left. Her mother complained that she had also been unusually tired, falling asleep in class and having trouble with her schoolwork. The young girl was discharged from the large hospital opposite Central Park and walked out into a winter day. She would not return to a hospital for another four years.

R
osie was again taken to the Neurological Institute, this time in 1928. Her case history, accurate and utterly impersonal, recorded a masklike expression on her face, a spastic gait, a left arm flexed with a significant tremor, a squint in her left eye, and a deviation of the tongue to the left. Her blood and spinal fluid tests failed to detect anything out of the ordinary. She was given a diagnosis of “chronic epidemic encephalitis,” which would have been the logical cause of her Parkinsonism.

By then, Rosie was in the eighth grade, and she returned to school after her visit to the Neurological Institute, but she struggled, unable to concentrate and frustrated by eye spasms that made reading difficult. It was during this time that the first sign of a personality change became obvious to her family. Her temper became unmanageable, and Rosie tore at her clothing and attacked her mother.

In shock, her mother waited for her to calm down and asked, wide eyed, what was wrong with her.

“I couldn’t help it,” Rosie said sincerely.

She also could not help the subsequent explosions when she broke windows, threw tantrums, and lashed out at her sisters, each time growing sleepy and lethargic afterward. In a dazed trance, Rosie would repeat, “Why do I do it? Why do I do it? I can’t help it.”

It was during this time that Rosie began locking herself in the bathroom. The first time, she reappeared sometime later, trailing blood and missing teeth. Horrified, her mother demanded to know what had happened. Rosie calmly told her that she “could not help taking them out.”

Rosie would remain awake, anxious and irritated, waiting for family members to go to bed. Once they did, she returned to the bathroom, shut the door, and began extracting her teeth again. She pulled all but nine of her teeth. An infection forced Rosie back into the hospital in March—this time Bellevue. A dentist there had to remove seven more teeth due to infection and damage.

The next few months were relatively quiet for Rosie. Spring came and went, and summer now slouched around the city buildings, leaving shards of sunlight in places and pools of shade in others. Heat wilted the leaves on trees and warmed the pavement. Horse flies, heavy and slow, hung on the hot air. Rosie’s mind, like summer itself, began to seethe.

S
elf-mutilation, as Rosie’s case developed into, was not an anomaly. History is full of examples of self-injury ranging from mild to extreme. Self-flagellation was practiced among religious groups. A late-nineteenth-century study looked at a number of women in Europe, known as “needle girls,” who pierced their own skin with sewing needles. Self injury was also seen by physicians during World War I when soldiers would shoot their own hands or feet in order to escape certain death on the battlefield. And teeth in particular seemed tempting to self-harming patients. Given the time period and poor dental health that may not be surprising—epidemic encephalitis was also known to cause nerve damage and rotten teeth, which may have prompted Rosie to remove hers. But one cannot overlook the motivation behind the behavior either.

Interestingly, self-injury is also a twentieth- and twenty-first-century problem. People who practice it search for a way to stop, if only momentarily, the internal pain with an external one. They describe a sense of immense relief when inflicting pain. Researchers have found that self-injury occurs most often in girls and tends to peak around the age of fifteen, declining after the age of sixteen. Rosie was not yet that age, but she soon would be.

While Rosie’s case was certainly not in the mainstream, self-mutilation was something physicians had dealt with for centuries. There is even a martyred saint for its cause. Saint Lucia, who is celebrated in December when there is the least amount of sunlight and the longest hours of darkness, was a young woman relentlessly pursued by a pagan suitor who told her she had beautiful eyes. A devout Christian, she plucked out her own eyes and sent them to him with a note asking to be left alone from that point forward. It is said that when the martyred Lucia arrived in heaven, God restored her vision and gave her an even more beautiful pair of eyes.

Self-injury can be found in everything from medical texts to Shakespeare to the Bible: “And if thine right eye causeth thee to stumble, pluck it out and cast it from thee.”

I
t was a hot July when Rosie’s mother admitted her to the newly opened Morrisania Hospital. The Morrisania complex was built in the Bronx as part of a revitalization effort in that part of the city and had opened just two years before. The hospital was impressive, designed by the same architect who designed the old Tammany Hall headquarters, the New York City Courts building, and the Tombs. Rich in architecture, with a red tile roof, sand-colored bricks, and an ornate, Neo-Renaissance façade, the hospital was also well lit with sun parlors, a courtyard, and a garden.

It had been months since Rosie’s last trip to the Neurological Institute, but her mother noticed that one of her eyes was swelling and reddening. She was also running a low temperature of one hundred degrees.

That month, there was a record heat wave, spreading across the Midwest, moving sluggishly toward New York, and finally reaching the city in the last week. Already, the heat wave had claimed eighty lives nationwide. In New York, on July 30, it was the fourth consecutive day of unbearable heat tipping the thermometer at ninety-five degrees. At the hospital, fans whirred, and windows were opened for the breeze. One of the house physicians examined Rosie, admitted her to a bed, and washed her eye with boric acid. An ice pack was placed over her eye. Outside her window, in the distance, a weak wind moved across the shimmering Harlem River, turning the surface of the water reptilian.

There was also a full moon on the last days of July, brightening hospital rooms late at night. Science has never been able to explain the influence of a full moon. It controls ocean tides. Studies have shown more violent acts occur under a full moon. More pregnant women go into labor during a full moon. More people are admitted to the hospital. And there has long been a belief that a full moon gives rise to its namesake: lunacy.

R
osie lay in the hot hospital room in a gown as soft as a cobweb. She was lulled into a quiet sleep, still hearing the fans, the commotion in the hospital halls, and voices outside her door. Occasionally, a radio’s hollow sound echoed through the hall broadcasting news about the heat wave, as well as a plague of grasshoppers that had destroyed so many crops that the federal government was called to action. Even the newspaper headlines bemoaned in biblical tones the high temperatures, “leaving in their wake a long trail of death, suffering and destruction from pests and fire.”

That night as Rosie tried to sleep, a rumbling thunderstorm moved into the city, with winds clocking over forty-five miles per hour and carrying the rain that would bring an end to the blistering heat wave. On that last day of July, at 3:40 A.M., as the storm was coming to an end, the winds quieted, the air cooled, and the last of the rain streaked the windows, an attendant went to check on Rosie.

The woman came screaming out of the room.

The attendant hurried to the floor desk to find the nurse in charge of that ward. The nurse rushed into Rosie’s hospital room and found her sitting calmly in bed, holding her right eye in her hand.

The nurse asked Rosie what had happened, and Rosie, completely stoic, told her that it had just fallen out while she was sleeping. The nurse later reported that Rosie’s reactions were quite normal except for her seeming indifference toward what had happened. She did not complain of being in any pain, and she did not seem in the least disturbed. Somehow, wrote her physician, “the encephalitic process affected the pain perception mechanism so that its activity was suspended for a brief interval during which time this remarkable self-injury took place.”

The next morning, the storm gone, the light was liquid, pouring through the hospital windows, seeping down the hallways. There is no record of which room Rosie stayed in, but given the hospital’s well-designed windows and views, her room was likely filling with sunlight by 7:00 A.M. when Rosie was found lying in her bed. Her left eye looked normal and the socket of the right one had been dressed with gauze.