Asleep: The Forgotten Epidemic That Remains One of Medicine's Greatest Mysteries (23 page)

It’s interesting to note that Wilson’s potential bout with encephalitis lethargica just after World War I and Adolf Hitler’s possible case of the disease during the war would each land Europe on the path to World War II—Wilson for agreeing to the harsh Versailles Treaty, Hitler for rising out of the treaty’s inherent dysfunction. Even more telling is how pervasive the fear of encephalitis lethargica was at that time. The disease was still so broadly defined and inconsistently diagnosed that this “forgotten epidemic” was becoming a catchall for erratic and damaged brain function.

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n the winter months of early 1918, when Sylvia had influenza, hospital tents in the French countryside were filled with flu patients. Soon, the hospitals in and around the cities were as well—especially when large battles were expected, and the field hospitals had to be evacuated to make room for the wounded. In these wards already overcrowded with war wounds, especially with mustard gas injuries like swollen, disfigured faces and blindness, the flu cases were almost as frightening. Some people died within hours, literally drowning from the fluid in their lungs. The effect was so dramatic and so quick that it starved the body of oxygen, and flu patients grew cyanotic, with their toes or fingers or lips growing blue-black. Everything possible was done to keep the illness from spreading to other patients. The wards were so full, sometimes the only places the nurses or drivers could find to sit and rest was on the empty coffins.

Sylvia recovered from her case of the flu, continued her work as an ambulance driver, and, just as the Red Cross was withdrawing its workers in 1920, came down with another case. Her departure was delayed, but she recovered fully. She remained healthy and after the war spent time on the French Riviera. After that last bout with the flu, Sylvia described herself as “never ill a day.” It was a full decade before that would change.

Sylvia was living in the United States again, both in an apartment in New York and at a family home in the Connecticut countryside, a sprawling, two-story white clapboard house with dark shutters and a winding porch. One day, while she was playing tennis, she suddenly threw her arm out of joint. She saw her family doctor, and after a few weeks, her arm was completely recovered—until it began to shake. A friend, who noticed Sylvia’s arm was “out of pluck,” recommended she wear it in a sling, which she did for the following year. The trembling in Sylvia’s arm continued and would come and go depending on how she used her arm. She complained of some stiffness as well. By the time she visited the Neurological Institute in 1934, she was also walking with a limp.

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riginally, Sylvia was seen in Dr. Tilney’s office, with her medical record typed on his letterhead, but she later was examined by a doctor named Kate Constable. Given Sylvia’s age, fifty-three, which was still considered young for the traditional onset of Parkinson’s disease, and her history of the flu during the war, the diagnosis became chronic epidemic encephalitis. Remarks in her case history included, “This patient has a progressive, degenerative disease, the prognosis of which is very poor.” Sylvia was showing the classic chronic symptom of epidemic encephalitis: Parkinsonism. Photographs of patients with advanced stages of this condition show them hunched over, the spine protruding awkwardly from the back, hands hanging well below the knees, fingers curled, like the evolution of Darwin’s early man, but in reverse—a step backward from the upright, normal, healthy Homo sapiens. Documentary footage of the patients depicts them in much the same way, with arms frozen in front of them or knees permanently bent or bodies slumped forward in a wheelchair. They have the same masklike expression and smooth, waxy skin that robs them of their individuality and disguises them in uniformity. They look like bodies that have been stripped of their minds.

The footage is a sad foil against the advances in motion pictures during that time. Movies captured the movement of people; these films captured their terrible immobility. These statuesque victims of sleeping sickness are even thought to have been part of the inspiration for an entire genre of horror films. They began in German films with
The Cabinet of Dr. Caligari
, a film about a doctor—the head of an insane asylum—who uses a sleeping, entranced patient to murder people. America soon followed with a Bela Lugosi film whose tagline read: “She was not alive, nor dead.” Another film told the story of a woman who caught a sleeping sickness and was the victim of shock therapy. These “zombie” films may well have been inspired by relics of the sleeping sickness epidemic. They showed in moving black-and-white the fear and dread of an illness that could cause deep sleep and permanent disability, a disease that left a patient neither dead nor fully alive.

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ver the next six years, Sylvia would receive treatment in the encephalitis ward of the Neurological Institute fifty-one times. She sat in the soft pastel rooms where medicine cabinets held aspirin tablets, talcum powder, iodine bottles, boxes of cotton, and tins of Johnson & Johnson Band-Aids—and yet nowhere in those cabinets, among all those glass vials or cork-stopped bottles or tins, was there any medication to relieve her disabilities. A number of vaccines were tried on Sylvia, as well as bromide, vitamin B injections, quinine, and belladonna, which she detested because it tasted like prunes, but which she also felt was doing her much good. She even tried cobra venom after her sister read it could help with the aftereffects of sleeping sickness.

By then, the Great Depression was in full force. Most days, Sylvia rode in a taxi, with her dog in her lap, to the Neurological Institute for her regular treatments. The drive was long—autos rarely made it above fourteen miles per hour—and she must have watched with envy the women who were still able to walk and move freely on the sidewalks. Nonetheless, the somber mood on New York streets was evident. Women wore plain cotton ready-to-wear dresses, much less flamboyant than the styles of the previous decade. Rather than hand-sewn buttons, they had the more practical slide fastener—later known as the zipper. Shoes had sensible rounded toes and thick heels. An endless stream of black, gray, and brown clothes swept by the window of the taxi. Men, like the women, also dressed practically. They no longer changed suits during the day—it was becoming too costly—so men owned fewer suits or abandoned the suit altogether for jackets in blazing colors, or “blazers.” On the sidewalk, they stood out like colorful leaves dropping in a flow of muddy water.

As Sylvia made her trip up to Washington Heights from her apartment on Park Avenue, she also passed the lunch counters and soup kitchens, storefronts boarded up and vacated, more beggars on the streets, and children asking for food. Street corners were bright with the reds and greens, pinks and golds of the apple carts thousands of New Yorkers now relied on to make extra change.

Surely, Sylvia herself began to wonder when the money would run out and how she would make ends meet. How much longer would the vaccine trials last, and if they proved ineffective, who would take care of Sylvia, as her condition grew worse and even more hopeless? Sylvia was seeking treatment on Mondays in the free clinic at the institute since she could no longer afford to pay her bills. Money was rarely out of her thoughts; she even named her dog Budget. Sylvia had never married, she had lost her job due to her disabilities, and she received only a small sum annually from the Red Cross. The rest of the burden fell to her sister and her sister’s husband. This was not easy in the midst of the Great Depression. Sylvia’s sister was already caring for their elderly father, as well as two adult sons unable to find work to support their own families. Her family had been selling property, their boat, giving up club memberships. They could afford only half of what was needed yearly for Sylvia. She had hoped to get a job herself, but jobs were scarce, and her handicap was becoming more apparent.

Sylvia’s vaccine schedules were intense—weekly, then daily, with the measurements increasing slightly with each dose. A course could begin with 2 cc and end with over 20 cc. Sylvia kept accurate records, and indeed seems to have been prolific in her correspondence, even sending Christmas cards to her doctors that showcased her humor. The cards were from Sylvia as well as her aptly named dogs and cats—“Merry Christmas from Budget, The Vitamins, B1 + D, Calcium, Phosphorus + Sylvia Williams.” She frequently sent telegrams asking questions of both Dr. Constable and Dr. Neal, who were overseeing her case during the vaccine trials. She was instructed to avoid coffee, spices, alcohol, and tobacco, but the last two were rescinded because Sylvia liked to smoke and enjoyed mint juleps in the summertime. The doctors had originally advised her to stop because those were the recommendations from Europe, but they were not necessarily adhered to in New York.

Sylvia rarely dealt directly with Tilney. For one thing, Tilney’s health was beginning to trouble him by 1935. His position at the Neurological Institute was demanding, and he walked slowly, still limping from the stroke he suffered a decade before. But Sylvia did send him thank-you notes for her treatment. She also continued to write to Neal, inviting both her and Constable to visit her country home.

On some days, Sylvia went to the clinic for physical therapy, which included massage for her legs, in addition to her regular treatments. On other days, Constable would make house calls to Sylvia’s apartment to give her injections. The first year went smoothly, although occasionally Sylvia’s emotions got the better of her. She wrote an apology note to her doctor for letting her feelings get out of control at the clinic one day: “Up until then I had believed I was through with such reactions when problems presented themselves and I do believe my nerves are in a much better state of control than when I first went to the hospital. I never used to be this way at all.... Another of Neal’s patients at the clinic expressed similar views, describing herself as having a lack of charm, poise, tact, and diplomacy. “I am jealous, selfish and greedy,” she said to Neal. ”I use aggressive measures as defense mechanisms. I am become mentally subnormal and morally delinquent.”

In general, Sylvia’s case was typical of the disease in adults. It began with the Parkinson’s symptoms—a tremor in the hands or the classic “pill rolling” gesture that looks like someone is rapidly rolling a small pill between the thumb and first finger. Sometimes muscles would freeze, and the patient would stop midstep. For patients with chronic encephalitis lethargica, the disease progressed from there, and it would for Sylvia as well.

Sylvia’s letters chronicle her slow, steady physical decline—from a relatively normal life with a mild disability to one in which she was losing control. She staggered “like a drunk” from wall to wall when she tried to walk. But she was still typing her own letters and signing her own shaky signature. It’s obvious from the number of them and the personal nature of them that Sylvia enjoyed writing letters. It was a way in which she could still stay connected as her disease grew more isolating. By 1940, she could no longer leave the house. On some days, she could not leave the bed. Her handwriting gave way. Soon, she would lose the ability even to take care of herself or feed herself.

Sylvia was losing weight, writing to her doctor that with a close haircut, she could look a lot like Gandhi. She described her legs as having no “starch,” with weak, loose muscles that would manage to freeze up and partially paralyze her. “Too bad,” she wrote, “one can’t get spare parts.”

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he vaccines seemed to help Sylvia for a while. Or the apparent improvement may merely have been the course of the disease, which could progress at a slow but agonizing pace, leaving the patient hopeful one day and in despair the next. Sylvia let her apartment in the city go and spent most of her time confined to her country home not far from Danbury, Connecticut, receiving her vaccines and medications through the mail. Her gait had become so distorted that she had to bend way over at the waist in order to balance herself as she walked. And, unable to write, Sylvia now dictated letters to her nurse.

By the first days of 1940, she needed full-time care, and was also proving to be a handful for any caregivers. Sylvia’s case became what so many of the chronic epidemic encephalitis cases did—a constant struggle for family to find a suitable place as the patient grew worse and more unmanageable. There was a steady stream of correspondence between Sylvia’s family members and her doctors, most notably discussing their financial situation and the best place for Sylvia to receive care. At the time, small private “homes” existed for minor care of patients, but they could be costly. The vast majority of the homes for incurables were in awful shape—especially the affordable ones. Sylvia spent time at one of the more upscale homes, but described it as the closest thing to incarceration that she’d ever experienced—especially the strict “lights out” at 9:00 P.M.

By the following winter, Sylvia was back at her home in Connecticut, but it was her last winter there. She planned to stay through the pleasant summer months, but was already aware that by autumn, she would need a nursing home. She was bedridden now, unable to use her arms or her legs. Her family found for her what seemed like a perfect situation—a private home in West Haven, facing Long Island Sound. The woman had a state license to use her house as a nursing home with a maximum of six patients. In the beginning, Sylvia was the only patient. It wasn’t long, however, before Sylvia’s family received complaints from the house’s operator that Sylvia demanded all the nurse’s time, calling her four times in the night for various complaints or to ask to rearrange her covers an inch or two.

Her family realized Sylvia would not make it long in the private home, perhaps only until spring, before they might have to send her to some dreadful public institution. Out of desperation, they contacted Dr. Constable and asked for an honest assessment after her next visit to the Neurological Institute. If it was likely she would live only a few more years, they could afford to put Sylvia in a nicer, private institution; if not, they had to look at the most economical situation, which would be a long life in a “ghastly place.” Dr. Constable wrote back, in December 1941, that Sylvia seemed in very good health, aside from her chronic epidemic encephalitis: “I think that one has to look forward to a fairly long period of life for her, unless, of course, something unforeseen happens.”