Asleep: The Forgotten Epidemic That Remains One of Medicine's Greatest Mysteries (6 page)

Tilney also saw an opportunity taking shape in neurology. He had seen the labs in Germany, and he knew they were far superior to anything in America. But he also knew Europe had been waging a war against itself. The continent was cracking under the warring factions, and it was bleeding away the advantages it held. This could be the perfect time for America, and specifically New York, to become the neurological center of the world.

The original Neurological Institute was a mere six stories high and sat sandwiched between a police station and a firehouse on Sixty-seventh Street. Physicians and patients listened to sirens through most of the day and night. The building had one operating room and one operating table with broken legs fastened together by a wooden splint. In the corner of the operating room sat a stand with a cracked water basin, and in another corner was a broken copper water sterilizer. A thin layer of dust coated everything in the room. Still, in the first year alone, fifteen operations on the brain were carried out at the Neurological Institute, another twenty-one surgeries on the spine, and still another twenty-one on the nerves. The institute quickly grew from one room and one technician to occupying the entire floor to requiring a new, state-of-the-art building. Even more impressive was the number of outpatients who flocked to the institute. In its first year of operation, a little over ten thousand came for treatment; by 1912, just two years later, the number had nearly tripled.

Tilney’s reputation grew as well, and by 1918, he was president of the New York Neurological Society. He was also teaching at the Neurological Institute. One of his former students described him as a born teacher and an extremely erudite gentleman: “He was a tremendous worker, and he had a combination of qualities which are rare. His keenness of intellect and his power of expression in speech and writing were unusual.” If anything, his only drawback was that his good nature and amiability could almost be a weakness. The same student went on to explain that Tilney had no knowledge of the pettiness in life; he was overwhelmingly kind.

At the time, Tilney was a talented, ambitious neurologist. In the next decade, he would become known as the country’s greatest specialist on brain function.

Tilney climbed the steps to Ruth’s home and rang the bell. He removed his hat, kicked the ice off his boots, pulled his hands free of his gloves, and held tight to a leather medical bag full of instruments and medications.

I
n New York, in neurology, in the world, progress carried science and medicine further during the early twentieth century than at any time in the past. A historian of the time period noted that we learned yellow fever was spread by a mosquito, typhus by a louse, bubonic plague by a flea, typhoid and cholera by germs in water and milk. We discovered insulin for diabetes, vaccines for viruses, adrenaline, antitoxin for diphtheria, X-rays for imagery, treatments for syphilis, and radium for cancer, as well as other major advances for surgery and sanitation.

Medical science was easing the burden of mortality rates and cycles of mourning. For parents, there was a sense of relief. Their children would not have to grow up with the fear and curse of epidemics. Losing one or two or three of their children to disease no longer consumed their every thought. But maybe it should have.

CHAPTER 5

Ruth

I
t took a moment for Tilney to adjust his eyes from the bright light of snow to the dark house, which under coal drafting had extinguished all lights at sunrise. White winter light was coming through the windows and, in spite of the heavy winter drapes, silvering the soot that floated through the room.

Tilney was led from the drawing room to Ruth’s bedroom to see the sleeping girl. He did not know for certain what Ruth had, but based on the symptoms her parents described, he had a pretty good idea. Tilney had heard of an epidemic of encephalitis occurring in Europe; doctors were calling it by the technical name “encephalitis lethargica,” but the public referred to it as “sleeping sickness.”

He had already seen a few cases he believed were sleeping sickness. In fact, he may have seen the first. The year before, a mother had brought her limping son to see Tilney. The boy had become ill while traveling to England with his mother, and because they had come from New York just as the city’s largest polio epidemic was dissipating, the English physician they saw had assigned a fairly simple diagnosis. Tilney didn’t have access to the case notes, but he wasn’t sure the diagnosis fit. The boy had fallen into a deep sleep for fourteen days straight. When he had finally come to, it took several more weeks for him to have the strength to lift his head from the pillow and months before he could fully walk again. His right leg never recovered and soon lost the sculpted shape of a child’s muscle. By the time Tilney saw the boy in New York, dragging a lame leg into the office, Tilney believed the illness had been something else entirely. He later wrote, “In no other way did it seem possible to explain the unusual and prolonged somnolence.”

The few cases of sleeping sickness Tilney had seen since then were disturbing. In all of the cases, Tilney had noticed inflammation of the brain tissue. What was unusual was the range of symptoms. Some died in a deep sleep, while others died from insomnia—literally, staying awake for days before their bodies gave out. Even more frightening was what English doctors had been reporting: that there was not only physical damage, but mental damage as well. Epidemic encephalitis was literally a kaleidoscope of symptoms. How was it possible to have an epidemic of sleepiness, sleeplessness, paralysis, hyperactivity, and hysteria all at once?

Tilney feared that Ruth’s would be one more case of the disease that was building toward an epidemic in New York City, though no one yet called it an epidemic—especially not the health department.

R
uth had been described as a healthy and robust girl, but when she returned from work the week before Christmas, she started complaining of a severe pain in the index finger on her right hand. It was acute and came on suddenly that afternoon.

By the time she reached home that evening, the pain had spread up her entire arm. The arm ached for hours, and then the pain disappeared suddenly, leaving her right arm slightly paralyzed. Up to that point, an aching arm and what seemed like joint pain had been her only symptoms. The symptoms had come on quickly, but certainly did not point to anything more disturbing to come. And so it was both startling and frightening when Ruth flew into a sudden rage.

She became irrational and violent, lashing out at her parents. It was as if their daughter had gone insane—immediately and without warning. The family history presented no tendency toward mental illness, and although Ruth’s older sister had epilepsy, no epileptic seizure had ever been like this.

With wild eyes, thrashing limbs, and clenched teeth, Ruth finally had to be sedated and restrained. Then Ruth fell asleep. Even as she slept, her temperature rose to 102. Her parents could only stand back and watch their daughter, strapped to a bed, gasping in stunted, rapid breaths of air like an animal. At first the sleep must have been a relief, but as the days and weeks passed, it would become terrifying.

Ruth’s eyes had closed just before Christmas, and they had never opened again. It was now nearly February, almost as if she was hibernating through the harsh winter. There would be no memories of that Christmas, of snow on her windowsill or fire smoke or cold sunsets that turned the sky the color of plums. While she slept, she had lost weeks of her life.

Tilney studied the young woman in the bed. Ruth was being kept alive with a feeding tube and a Murphy drip for hydration. She was still very weak and lethargic; her eyes and mouth were closed. When prompted, she could move her body side to side.

The only thing that took away from the serenity of what appeared to be a sleeping girl was her shape. Her arms were rigid and bent out of the sheets, her fingers flexed. One doctor would describe it as resembling the “effigy on a tomb.” It looked like a position impossible to hold for any significant length of time, and yet Ruth had been that way for hours. When Tilney went to the bed to examine her, he pulled gently and found that her arms could be moved out of their statuesque pose.

All through her body, her muscles were taut, her limbs rigid—not the stiffness of something frozen still, but the agonizing stiffness of muscles tensed. And still, even under that physical pressure, her muscles never strained or relaxed.

Like her body, Ruth’s face was fixed and masklike. Tilney shined a light into her eyes, but they were nothing more than two dilated spheres of blackness. She showed no reaction to the light. Nor would the muscles around her eyes twitch or wink. She also failed Tilney’s tests for smell and sound. Even if she had been able to identify a sound, smell, or sight, her body had no way of responding.

Ruth was fixed in this state, unable to move, and when Tilney tried to move her, she began to tremble. It started with a hand or arm and then spread until her entire body was convulsing in a rabbitlike twitch.

It’s remarkable how quickly the body becomes grotesque and crude when disconnected from control of the brain. Ruth’s mouth would drop open; saliva would run down her chin. Her hands would clench. She would shudder and shake. She was not paralyzed, at least not in the sense that she’d lost all feeling. She could feel her bed, and she could feel the restraints on her wrists and ankles, the weight of them against her skin.

Surely, too, she smelled the scents that came and went from the room, felt the cold air that rushed into the room whenever a window was opened. She heard the sound of icicles falling from the tree limbs and shattering on the street during the night. And she listened to the voices.

It was Dr. Tilney’s voice that told her to blink her eyes or squeeze his hand. His voice asked her whether or not she could smell pungent odors or hear his voice. Of course, she could, but she had no way of telling him so. And Tilney was the one who bent her limbs, and, like a puppet to its master, her body would respond. But then the tremors would begin, shaking her body so hard she could feel the bed beneath her quaking.

To compile his case study, Tilney also inquired about family history, Ruth’s eating habits, how many cups of coffee she had a day, if she drank alcohol, if she took exercise. He photographed the girl for his file. He then followed up with further tests—her blood work was normal, the Wasserman test was negative, her spinal fluid was clear. Everything but the girl herself appeared normal. Tilney’s case histories covered as much as possible of the patient’s life. Since Tilney’s handwriting, like most physicians’, was hurried and illegible, he often typed up his cases, and his typed files answered the usual questions.

Character of Birth: Premature or late, breach or complications? Status of Birth: Color of infant, weight and size of infant?

Diseases: All of the usual diseases, blows to the head, malaria, abnormal crying, eccentricities, conduct, poisoning, sleepwalking?

For treatments, he prescribed sponge baths to control fever, high colonies given daily to flush the system of any germs, and frequent lumbar punctures. In cases of insomnia, barbiturates were prescribed.

In Ruth’s case, she remained in a deep sleep and could not be roused. Tilney was at a loss—here was a patient who looked to be in a coma, but wasn’t. A patient who appeared paralyzed, but could be moved, bent, and changed into different positions like a doll. A patient who showed no response whatsoever to light, sound, touch, or smell, but could react when told to blink or squeeze a hand. Somehow that made it worse. There was not even the comfort that Ruth was unaware or oblivious to what was happening to her. Ruth was truly imprisoned in her own body, a child, palms pressed against the window, looking through the glass.

Finally, standing just beyond Ruth’s bedside, Tilney quietly told the girl’s parents that there was nothing else to be done. He had performed every possible test; there simply were no answers. Ruth seemed to fall away from their reach, deeper and deeper into her own closed world like a face disappearing beneath the surface of water. Tilney apologized and in quiet tones told Ruth’s parents that she would never recover.

When Tilney turned and looked back at the sleeping girl, tears were running down her cheeks.

T
ilney walked back to his office in a city draped in the bleakness of a winter dusk. Night was already beginning to fall, bringing the smell of gas from the marigold globes of street lamps. As the dark softly enclosed the buildings, their shapes turned blue, then gray, then black, as they were lost to the darkness. And in this ashen light, he could see frost still lining the lampposts and fog coming off the river, settling over a rice paper moon.