Asleep: The Forgotten Epidemic That Remains One of Medicine's Greatest Mysteries (15 page)

In spite of their personal setbacks, both Jelliffe and Tilney were caught in the midst of revolutionary changes in brain study just as the epidemic of sleeping sickness peaked in New York City. From the perspective of 1925, with so much momentum, energy, and change taking place not only in neurology and medicine, but in the world, no one could have foreseen the clouds beginning to gather.

CHAPTER 14

A Two-Headed Beast

W
hen the epidemic of encephalitis lethargica first swept across Europe, physicians knew little of what to expect from this disease with its kaleidoscope of symptoms. The only thing it seemed the doctors could count on was that this disease was unpredictable. Jelliffe himself had said, “There is probably no other acute infectious disease which gives rise to, or results in so many diversified types of mental disturbance.”

After the initial wave of acute cases that spread to countries all over the world from 1916 well into the 1920s, there was a steady decline in the number of acute sleeping sickness cases. By the late 1920s, the epidemic was considered if not over, at least on the way out. Physicians, both then and now, estimate that one-third of the patients died during the acute stage, one-third recovered completely, and one-third developed permanent disabilities.

Unlike polio, which had left thousands of children paralyzed, epidemic encephalitis often had no direct, comprehensible link to the illness that had prompted it. Children and adults paralyzed by polio recovered from their fever with immediate knowledge of what they had lost. Epidemic encephalitis seemed almost crueler in its legacy; it allowed patients and their families to hope there had been a full recovery. It was then that the disease’s long-term effects came on suddenly and horribly. For the next several decades, these survivors of the epidemic, mentally or physically handicapped by the disease, would fall under the antiseptic term “
postencephalitic
.”

I
n many cases, usually the adults, it began with a tremor, a small, seemingly inconsequential movement; its implication, however, was anything but inconsequential. It meant that inside the brain, the wiring was beginning to fail, like small fuses beginning to blow. The neurotransmitters failed to deliver the right messages, and in most cases, those neurotransmitters were the ones that controlled movement.

In the coming decades, these patients developed an extreme form of Parkinson’s disease, different from Parkinsonism as it is known today. Those slight tremors progressed quickly, and the uncontrollable movements soon tensed to the point of stillness, with the brain unable to tell the body to move. It came on slowly, as though the patient felt each of his or her limbs freeze as solidly as tree branches encased in ice. The disease left patients, for all intents and purposes, catatonic—completely unable to move, communicate, or care for themselves. During the encephalitis lethargica epidemic and in the decades immediately following it, two-thirds of all Parkinson’s patients were postencephalitic. Even more striking, the average age for onset of Parkinson’s disease during that time was thirty-six years old.

P
arkinsonism became the most common symptom among the adults who survived epidemic encephalitis, but children experienced chronic symptoms of their own. It is not clear why the disease was having such a different effect on children than on adults. Some doctors believed adult brains were developed enough to maintain self-control. The brains of children, on the other hand, were not finished growing. In a way, their brains were still pliable. When the disease caused swelling in the brain of a child, it damaged the wiring leading to the frontal lobe—the part of the brain that controls personality, impulse, self-restraint, pleasure, addiction, and decision making. The frontal lobe does not stop growing until around age twenty, so severe or long-term swelling caused by something like encephalitis lethargica would stunt the growth in many of those behavioral areas.

Seventy percent of children who survived epidemic encephalitis showed psychological changes. A third of those survivors showed severe or dangerous behavioral changes. This disease was a two-headed beast. The fatal wound healed, the second beast was coming forth.

CASE HISTORY FIVE

New York City, 1923—31
NAME:
Rosie
PHYSICIAN:
Multiple

CHAPTER 15

Madness

One would prefer a physical trouble which would produce outspoken feeblemindedness with its limited range of harmful effects to this encephalitis which may produce an intellectual, tormented and cruel monster out of a gentle girl or boy.

B
efore long, the mild references in the British press to “altered dispositions” in cases of encephalitis lethargica gave way to new, disturbing descriptions: gross mental defects, homicidal attacks, change in moral character, loss of self-control . . . effects most often being seen in children. Another article went on to say, “Thus it is possible that some instances of motiveless crime and of violent behavior are the result of this disease, and not as might be supposed, of inherent vice.”

Von Economo had started seeing these cases a few years after the initial outbreak in Vienna; they appeared in London and the countryside soon after that. One patient told von Economo that she was pregnant by the Lord and accused von Economo of being God himself. Another young patient had to be restrained as he was brought into the clinic, twisting, screaming, and begging the doctors not to burn him.

Reports were now surfacing of postencephalitic children who attacked their family members, tried to murder siblings, or attempted to rape other children. One child tried to bite the penis off another; a female patient attempted to commit suicide by breaking her neck beneath the foot of her bed. Another child put his head in the fire on one occasion and took a hatchet to his sister on another. Still another nearly strangled a woman on the street. Children were known to smear the walls of a room with feces. They ran off rooftops, tried to hang themselves, jumped into rivers.

Doctors studying one group of encephalitis lethargica children in Philadelphia asked them to record their dreams. One drew a picture of the doctor and penciled flames bursting from his head. Another wrote, “A mother had a little girl and a man came along and took her for a ride. He then told her to shut up. She didn’t. He put his hands over her mouth and cut her up.”

What’s worse, the children knew what they were doing. Numerous doctors reported that the children were not insane; they were completely aware, even afraid of their actions. That was one way to distinguish chronic encephalitis from other conditions like schizophrenia and psychosis. A truly insane person doesn’t know he or she is insane; a victim of chronic epidemic encephalitis knows all too well what is wrong. Some of these children even asked to be restrained to keep from harming other people.

A patient herself gave the clearest description of what it was like: “It’s so sad to be like me. This is only the beginning; it’s going to get worse. You don’t understand how it is not to be yourself. I feel so vicious at times. I was always good and kind to people. There are other people in the world like me. I feel sorry for them. I know a little girl like me, and I only pray that something will happen to her before she grows up. I want to tell you about this because the time is coming when I won’t be able to. But you’re well, you can’t understand!”

When acute cases of epidemic encephalitis first broke out in New York, the concern was for immediate care of the patients— whether in their home or in the hospital. From there, many went to the morgue. But others survived, and they were appearing in physicians’ offices showing chronic symptoms. Already in England, the Mental Deficiency Act had been amended. Originally intended to provide care for infants born mentally incompetent, it was changed in 1927 to include the survivors of sleeping sickness.

T
he children of epidemic encephalitis presented a unique problem for public health—they were too young to be housed with adult patients and, by the very nature of their behavioral disorders, they were disruptive to the other patients. In the city, children with epidemic encephalitis were becoming an urgent problem—there was no place for them. They could not be kept in the hospital indefinitely, and they could not live in adult asylums. They were a danger to their own family members and strangers alike. Where do you put children such as those—children who had lost everything but the knowledge of that fact itself?

Tilney would later say of the sleeping sickness epidemic, “Old and young alike fell before it, but the most pathetic victims were the little children who survived its ravages. The disease put a blight on these poor children even before they had a chance to get started in life. They were not only handicapped by convulsions and physical ailments of various kinds, but their entire conduct underwent a serious change. Children who were lovable and tractable became just the reverse. They became a serious problem.”

Parents at first struggled to keep them at home. Numerous physicians treated them and specialists were consulted, including Jelliffe and Tilney. But eventually the children’s nature—horribly damaged by the encephalitis—was not fit for society. They stole, snuck out of the house to wander the streets, exploded in fits of rage, and tried to hurt others. For New York families who could afford it, these children found a new home, far away from the city, in farm asylums.

T
he first thing visitors would have noticed as they drove into the Kings Park State Hospital was the long, tree-lined avenue carving a meandering, manicured path toward Long Island Sound.

The next thing noticeable to any visitor was how much the asylum looked like a small town or village. There were no towering buildings with barred windows; those would come later. Instead, white, two-story clapboard cottages spotted the serene landscape of pines and oaks, pastures and wood trails.

On one side of the avenue was a fire station, an open field, and, in the distance, the stately houses where some of the facility’s physicians lived. On the other was a series of buildings, a barnyard, and a smokestack and apple orchard in the distance. At its height, Kings Park Hospital occupied eight hundred acres. While cities modernized and moved away from rural life, farm asylums maintained a sort of old-fashioned existence.

When the train came into the town, the engine was cut and it coasted into the Kings Park station carrying coal, molasses, coffee, tea, and spices. Workers unloaded the supplies into the storage rooms of the depot, laying them out on long, butcher-block tables to be delivered to the kitchen house.

There was nothing for the train to carry back out of Kings Park. The self-sustaining community produced no waste, no trash—milk bottles were used, then left out for the milkman to refill; clothes were recycled and woven again; food scraps and kitchen garbage were fed to the animals; even laundry was done right there on the grounds as opposed to sending it to town for cleaning.

In the spring, Kings Park came to life as leaves unfurled and fruit trees blossomed. In summer, the brush and forests grew thick, and the white sails of boats appeared on Long Island Sound. Autumn brought butchering day, as well as the scent of sliced apples drying in sunlight and cider boiling. And in winter, barren tree trunks and bushes sat in the yellowing grass. The cottages and buildings looked naked without the lush greenery that softened them during the spring, summer, and fall. There was an unavoidable sense of dormancy, even death that accompanied winter there.

The Kings Park asylum had been opened in Suffolk County in 1885 on a lip of land that jutted out into the sound. Long Island had six farm asylums in all—each with several hundred acres. The farm asylums served as self-sustaining communities, like towns in their own right, where the patients could walk through the pastures and tree-lined roads. Above all else, there were no bars on the windows. This was meant to be a refuge, not a prison.

In addition to the theory that a restful respite from city life would do wonders for the nerves, it was believed that structure and responsibility were essential as well. So the patients who lived in these farm asylums were a working part of the society, with jobs in farming, gathering food, cleaning, gardening, laundry, etc.

Physicians regularly visited these farm asylums from the city or lived on the grounds themselves. Their focus was not to treat or cure these patients, but to establish a personal relationship in which the patient would trust and confide in the physician—in a sense, they were sowing the seeds of psychotherapy.

Occasionally, Kings Park made news. Fires were frequent there, as they were elsewhere, in the age of wooden buildings and questionable wiring. Other times, patients escaped. One of the more sensational cases out of Kings Park was the story of the Brush sisters. Both women had been committed involuntarily, and their vast personal wealth became the property of their doctors. Ten years later, they won a lawsuit against the doctors for false certificates of lunacy.