Asleep: The Forgotten Epidemic That Remains One of Medicine's Greatest Mysteries (25 page)

In a desperate plea to donors, Dr. Hubert S. Howe wrote that “ten years of painstaking effort toward a goal that might well be reached in the not too distant future will have been made almost in vain if the work has to be discontinued at this time.” He believed that just the sum of $5,000 per year for the next five years would make the difference between success and failure “of a truly worthwhile endeavor.” In his letter, he also mentioned the patients themselves, dependent not only on the clinic for medical help, but for hope: “it would be a real tragedy if they were one day told they could no longer return.”

Tilney accepted a position as medical director of the Neurological Institute in 1935, but by then his health was poor. When he died of heart disease three years later, the physician who replaced him did not believe encephalitis lethargica to be an infectious disease and suspected that the entire epidemic had been misinterpreted by the medical community. In the coming years, it would be classified as a syndrome more than an epidemic. As medical historian Kenton Kroker has noted, “For American researchers, the temporal horizon of the disease no longer pointed toward the future of neurological research. Instead, it gestured toward the past as a novelty of history unlikely to repeat itself.”

On that point at least, the physicians of the 1930s were wrong.

Dr. Josephine Neal continued to work with the health department, as well as the Neurological Institute, finally asking for cab fare to stop having to make the long trip from Gramercy Park up to Washington Heights by subway. She was aging, and the commute had become tiring. Nonetheless, Neal would continue her work until her death in 1955. By the time she died, at the age of seventy-four, this woman physician who had struggled even to be allowed into medical school had been the associate director, as well as head of the meningitis division, of the Bureau of Laboratories in New York’s Department of Public Health; a professor of neurology at the Columbia University; the director of the Matheson Commission; and a recipient of an honorary Doctor of Science degree from Bates College, a similar honor from Russell Sage College, and an Elizabeth Blackwell Medal for women in medicine. She had published definitive articles or books on meningitis, epidemic encephalitis, polio, and St. Louis encephalitis.

I
n 1938, Dr. Frederick Tilney died, at the age of sixty-three, after several months of heart disease. In Manhattan, a group of doctors, scientists, lawyers, businessmen, and socialites began raising money for what they hoped would be a $150,000 research fellowship in neurology in honor of Tilney. He had served as chairman of the Neurological Institute for fifteen years before becoming its director. Toward the end of his career he had focused on child delinquents and the criminal brain—in part due to the sudden rise in juvenile delinquency after the sleeping sickness epidemic. And, of course, he had been a researcher and member of the Matheson Commission. Tilney was considered by his peers to be one of the most distinguished and active figures in American neurology.

Slowly, the great pioneers of American neurology began to disappear, and neurology itself was being overshadowed by the exciting new field of neurological surgery. Neurosurgery, and in particular psychosurgery, was the new medical frontier. As a result, neurology and psychiatry, two fields inextricably linked to epidemic encephalitis, would split once and for all. Even the term “neuropsychiatry” would quietly drop the prefix “
neuro
,” and as one medical writer observed, “In a startling reversal of roles, the senior and previously more powerful field of neurology now played second fiddle to its upstart cousin.”

One of the greatest proponents of neuropsychiatry, Smith Ely Jelliffe, who had once called it “the fairy godmother of medicine,” died on September 25, 1945, at the age of seventy-eight, living just long enough to see the end of World War II the month before. His savings had been wiped out in the stock market crash of 1929, so he had continued working right up to his death. He sold the bulk of his book collection—fifteen thousand books—to the Institute for Living in Hartford. In spite of spending years on the outside of neurology, Jelliffe was celebrated in 1938 at a symposium at the New York Academy of Medicine, attended by Tilney just months before his death. Five hundred others joined Tilney in honoring Jelliffe and the thirty-fifth anniversary of the Journal
of Nervous and Mental Disease.

As a full-fledged psychiatrist, Jelliffe was also a strong objector to psychosurgery. In the late 1930s, he attended a medical meeting in which a study on the new procedure known as a frontal lobotomy was presented by Walter Freeman and his partner James Watts. Jelliffe compared psychosurgery to burning down the house in order to roast a pig. In particular, it bothered psychoanalysts that surgeons permanently destroyed the one part of the brain that therapy might heal. Other psychiatrists likened it to “partial euthanasia.” Throughout the 1930s and ’40s, they would wage a losing battle against psychosurgery and lobotomies until the advent of antipsychotic drugs in the 1960s. One of the early lobotomies performed by Freeman and Watts was that of Rose Marie Kennedy, whose low IQ and behavioral disorders proved unmanageable to her father. The operation did not go well, and she was left completely incapacitated, incontinent, and unable to walk or talk for the rest of her life. Another famous lobotomy case was that of Rose Williams, playwright Tennessee Williams’s beloved sister. While Williams was away at college, his parents had his sister, diagnosed with schizophrenia, lobotomized. As in the Kennedy case, Rose Williams was left in much worse condition. The tormented Tennessee Williams never forgave his parents, and he based several of his characters, such as Blanche in
A Streetcar Named Desire,
on his sister Rose.

In spite of early reports of success with lobotomies, a darker side to the mutilating surgery began to emerge. Patients were considered improved because they were so placid and lethargic—nurses had trouble even moving them. They also returned to a childlike state in many instances. The “success” of the lobotomy then was that it silenced raving, difficult patients. With initial excitement of psychosurgery fading fast, the majority of neurosurgeons had already turned their attention to herniated discs, tumor surgeries, and brain injury.

What’s more, by the 1960s, drugs and shock therapy could accomplish the same thing psychosurgery could. Neuroleptics like chlorpromazine (Thorazine) produced what were called “chemical lobotomies.” They were originally marketed as miracle drugs, and the side effects were downplayed. The “therapeutic” effect of these drugs was that they damaged the basal ganglia, the same part of the brain injured by encephalitis lethargica. Patients became essentially tranquilized and lethargic, and wore masklike, waxy expressions. In addition to this, because the drugs hurt the areas of the brain that control movement, they began suffering from Parkinson’s. In an ironic turn of fate, psychosurgery and neuroleptics, in their quest to cure mental illness, returned patients to a condition almost identical to the one neuropsychiatrists of the 1920s had worked so hard to conquer.

T
here is still no answer as to why the encephalitis lethargica epidemic was so widely forgotten. It may have been that the 1920s was a decade in which people wanted to enjoy life, not be reminded of its fragility. Or perhaps the disease, like World War I and the 1918 flu pandemic, remained an open wound in American memory. With so many advances in medical science, epidemic encephalitis may have been overshadowed by the medical successes. Or maybe the despair of the 1930s simply eclipsed it. One reason the disease was forgotten is certain: the thousands of survivors that epidemic encephalitis maimed ended up in institutions; they were removed from everyday life and, consequently, the collective memory of society.

In his book
America’s Forgotten Pandemic: The Influenza of 1918,
Alfred Crosby addressed reasons why the 1918 flu pandemic was almost lost to history: “The very nature of one disease and its epidemiological characteristics encouraged forgetfulness in the societies it affected.... If the flu were a lingering disease, like cancer or syphilis, or one that leaves permanent and obvious damage, like smallpox or polio, America would have been left with thousands of ailing, disfigured, and crippled citizens to remind her for decades of the pandemic.” The sleeping sickness epidemic did leave thousands of ailing, disfigured, and crippled citizens. And still it was forgotten.

The victims of encephalitis lethargica may have been overlooked to a large extent, but they still existed in the decades following the epidemic. In 1946, for example, Mayor William O’Dwyer, New York’s one hundredth mayor, lost his wife after a fifteen-year struggle with chronic encephalitis symptoms. She had the typical onset of Parkinsonism, and by the time she died, she was confined to a wheelchair in Gracie Mansion. She passed away in the mayor’s first year in office.

Two decades later, Dr. Oliver Sacks found several of these mysterious victims of the epidemic at the Beth Abraham Hospital—although he added that by the 1960s there was no major country in the world
without
postencephalitic patients. Sacks was a young neurologist when he encountered these relics from a past epidemic. Piecing together their medical histories, he was able to find the one similarity among these frozen patients: they were all survivors of the sleeping sickness epidemic. His experiments with the L-dopa drug in 1969 proved to physicians and family members that the survivors were in no way extinct. Up to that point, most doctors believed that the “virus” of epidemic encephalitis had damaged the parts of the brain that think as well as those that control movement. Believing that the survivors of the epidemic, these breathing statues, seemed unaware must have offered some small consolation. Once the patients awakened, however, many were able to describe exactly what it felt like to be trapped in their bodies by physical dysfunction, but still very much alive inside.

E
pidemic encephalitis was considered one of the most important diseases in the development of twentieth-century American neurology. In all, it afflicted an estimated five million people worldwide, killing one-third of them and leaving one-third to die inch by inch, minute by minute in asylums. One neurologist wrote that no other infectious disease affected so large a portion of its victims, or for so long a period of time.

In June 1942, the
Journal of the American Medical Association
reported that, “The common worldwide and devastating disease encephalitis has become familiar to every physician.” And in 1986, one medical journal called encephalitis lethargica “a disease of momentous importance for three decades.” The very neurologist for whom the disease was named, Constantin von Economo, had predicted it would never again disappear from medical memory: “One thing is certain: whoever has observed without bias the many forms of encephalitis lethargica ... must of necessity have quite considerably altered his outlook on neurological and psychological phenomena.... Encephalitis lethargica can scarcely again be forgotten.” By 1935, however, nearly all medical literature on the subject stopped, and by 1960, encephalitis lethargica was no longer even taught in medical school.

When Oliver Sacks encountered his
Awakenings
patients, these lepers of the twentieth century, as he described them, he wrote, “I would not have imagined it
possible
for such patients to exist; or, if they existed, to remain undescribed.”

T
he tragedy of epidemic encephalitis then was not the disillusionment of American neurology, nor the decade-long siege on New York City and its public health system, nor even the failed efforts of the medical investigators; it was the slow extinction of its survivors. The city of New York survived the tumultuous times, and the epidemic became little more than a fleeting memory. Cities rarely immortalize their failures, and this was not just New York’s failure, it was Philadelphia‘s, Chicago’s, Boston‘s, Vienna’s, London’s, Paris’s. It was also medicine’s failure. When the money to the Matheson Commission stopped, and neurology shrank behind the larger interests of psychiatry and neurosurgery, hope vanished. The neuropsychiatrists who had spent over a decade trying to understand this disease died one by one. The chance was gone, and medicine moved on.

The survivors of epidemic encephalitis were condemned to a life in mental asylums—institutions that were deteriorating so quickly they would no longer exist by the 1970s. What’s worse, those patients knew they had been forgotten. Their brains and bodies may have been damaged, but their minds remained lucid. It’s hard to imagine which would be worse—never knowing how or why they got this debilitating disease, or knowing they had been left in an asylum and forgotten as a result of it.

It wasn’t until 2002, when one of those patients was discovered after seventy years in an institution, that encephalitis lethargica came to the attention of modern medicine once again.

CASE HISTORY SEVEN

London, 1931 and 2002
NAME:
Philip
PHYSICIANS:
Multiple

CHAPTER 23

Philip

M
agton was a land where children were always kept safe. It was a Neverland of sorts. Philip used to imagine that he flew out his bedroom window over Magton Heath, the ground purple with fresh-blooming heather, the wan evening light settling over a land where fairies perched on tree limbs. “Remember that nothing can hurt you in fairyland,” Philip scrawled in a palm-sized leather notebook.

Imagination had always been a gift of Philip’s, but he had others as well. He had been playing the piano since the age of three and composing his own tunes. Philip’s parents, especially his mother, were sure he would grow up to be a composer or pianist. He was even considered something of a child prodigy. While other children struggled to piece together puzzles, Philip bored of them, turned them upside down, and put the pieces together without the images. He also built entire cities in his attic, made from bricks and wooden cotton reels.