Asleep: The Forgotten Epidemic That Remains One of Medicine's Greatest Mysteries (22 page)

Because the chronic nature of the disease presented an unusual challenge for the researchers, one member of the commission explained, “The only way in which real clinical knowledge of this baffling disease can be obtained is through the study of a large number of cases over a long period of time.”

The Matheson Commission would not be given that chance.

It must have been a mild day in Miami on May 15, 1930, when William Matheson, aboard his yacht, the
Seaforth,
returned to Miami after a trip to the Bahamas. About an hour from port, Matheson suffered a massive heart attack and died.

F
or the commission Matheson had created, his death was not only a personal loss, but also a financial one at a critical point in the vaccine studies and disease survey. His death also came at a dismal time in the city’s economy, in the very thick of the Great Depression. In his will, Matheson left shares of a corn refining company to the Matheson Commission, but the stock market crash had diminished their value. It would not be enough to fund the large project for much longer.

Dr. Neal’s title had been changed from Director of Research to Executive Secretary because it was felt that the whole group conducted research, and Neal was focusing on the compilation of material. After Matheson’s death, however, Neal behaved not like a member of the team, but its leader. As funds dried up and vaccine production slowed, she went to work raising money. First, she voluntarily reduced her own salary by 40 percent. She gathered contributions from friends, raffled off an automobile, and managed to raise about $5,000 on her own. The commission gave the money to a Wall Street investor, which turned out badly, reducing the sum to just over $3,000. There was barely enough money to finish the book Neal had assembled.

Neal’s staff was reduced to just one nursing assistant. Still, there were enough vaccines and plenty of patients to keep the study open on a much smaller scale for another decade. The Morgan Ward of the Neurological Institute was becoming like a charity clinic. The sudden appearance of St. Louis encephalitis in the 1930s also furthered the need for research. Although St. Louis encephalitis is a virus spread by a mosquito, much like West Nile, it was nonetheless an encephalitis and fell within the realm of their research.

For the Matheson Commission, their work wasn’t just about the race for a vaccine, or even the opportunity to make New York’s Neurological Institute famous for its encephalitis research. It was also about the pitiful and hopeless condition of its patients, patients with whom the doctors had developed long-term and friendly relationships. One of the doctors on the committee wrote in a report, “The importance of a solution to the problem of encephalitis cannot be underestimated. The existence in the United States of more than fifty thousand patients... suffering from varied and disabling symptoms of the chronic stage of the disease constitutes a humanitarian as well as a real public health problem.” He went on to describe it as a “truly tragic condition,” with disabilities “infinitely greater” than those of polio survivors. The physical handicaps of the adults and the mental defects of the children who survived epidemic encephalitis became an enormous strain on their families. The clinic, it was believed, gave these patients a sense of hope in what would otherwise be a bleak future.

Neal was able to keep the Matheson clinic in operation throughout the 1930s, in spite of the economic depression. She continually made the trip to her office at the New York Academy of Medicine. On other days, she took the Second Avenue el the length of Manhattan toward the Bronx and any number of hospitals along the East River. Glimpses of the river flashed at each cross street in frames like a motion picture. In the winter, when dusk came early, the view was dark until the bright bulb of the lighthouse off the tip of Welfare Island ignited like a false moon over the river. It must have cast a lonely light on the institutions lining the island (which people of the previous generation still referred to as Blackwell’s Island), especially the eight-sided dome of the lunatic asylum that sat closest to the lighthouse. The sliver of land parallel to the east side of Manhattan, yet still distinctly separated by ferries, the shadow of the Queensboro Bridge, and rough water, must have seemed an obvious symbol of isolation. There was a prison that had recently moved to Rikers Island, a hospital for the chronically ill, the lunatic asylum, a smallpox hospital, and now an influx of the downtrodden during the Depression—it was a solution for those who no longer had a place on the larger, neighboring island of Manhattan. If progress and change were to succeed in the 1930s, society had to move forward, not stall under the weight of challenges. Despite all her efforts, it was a lesson Neal soon learned.

S
lowly, the neurologists involved in the encephalitis lethargica research project began to turn their attention toward other diseases, even seeing vaccine production as getting in the way of other research. Worse, New York and its Neurological Institute were no longer considered the center of neurological study. Both Boston and Philadelphia now boasted their own impressive neurological centers. As a result, the number of patients they were able to accept into the vaccine trials at the Neurological Institute was greatly reduced. One of the only doctors Neal still had on her side at this point was Tilney, who remained interested in the clinical trials and possible treatments for his own patients.

As fate would have it, Constantin von Economo also died suddenly in 1931. By the time of his death, he had been nominated for the Nobel Prize in Medicine three times for his research on encephalitis lethargica. Undoubtedly, von Economo regretted not living long enough to see any solutions to this cruel disease that would continue to bear his name for decades to come.

A
nother blow to the Matheson Commission during the 1930s was the sudden popularity of a new technique known as psychosurgery—the most famous of which would be known as the frontal lobotomy. The first generation of neurosurgeons had been born out of this time period. Still a brand-new breed, neurological surgeons of the 1920s and ’30s had all been trained as general surgeons—there were no practicing neurosurgeons to teach them.

When neurosurgeons operated, they carried their own instruments to the various hospitals. The surgeons knew enough to wash their hands for at least ten minutes and to soak their scalpels in iodine and alcohol, and they’d learned, when drilling burr holes in the skull, to save the bone dust to fill in the holes afterward. Even if the neurosurgeons took precautions, however, the hospitals they worked in were often unsanitary. At Bellevue, where New York’s indigent and poor flocked, surgeons sometimes kicked away the cats and rats beneath the operating table while they worked. One patient, during a brain surgery in which she was still partially awake, asked, “Do you-all mind if I have just a puff on a cigarette? I brought ‘em along just in case.” The surgeon replied: “Go right ahead, honey.”

A nurse also told the story of how they humbled the new neurosurgeons at Bellevue. With windows facing west for better sunlight, operating rooms could become stifling. The attending nurses took salt tablets before the surgery, giving no warning to the eager young surgeon. An hour or so under that kind of heat, and the surgeon would faint with his amused staff still standing around him.

With little definitive success among the vaccine trials, psychosurgery and its building popularity became another option for patients with chronic epidemic encephalitis. It would seem a lucky stroke of fate for a patient named Sylvia.

CHAPTER 21

Sylvia

September 24,1942

Miss Sylvia Williams

Hall-Brooke Sanitarium

Greens Farms, Conn.

My dear Sylvia:

Your sister has just written to me about the holes in your head. There is nothing extraordinary about this because in doing an operative flap, four small trephine or burr holes are made. Between these a tiny wire saw is inserted and the bone is cut smoothly with a beveled edge. After the operation this so-called flap is put back in position and the beveled edge grows together. The burr holes remain, though after several years they may fill in with new bone. However, there is nothing to worry about since they are quite normal and no more of them will appear. So you need not worry about that.

Your sister tells me that you are in a chair and are feeding yourself. I am delighted to hear about this. I urge that you do this and do everything for yourself that you possibly can for the more you do, the more you will be able to do.

Please have one of your nurses write to me, or if you can feed yourself, you can probably hold a pencil and both Doctor Cramer and I would like a note from you written by you, no matter how short.

With very kindest regards from both of us.

Sincerely,

Kate Constable, MD

S
ylvia awoke to the sound of quiet voices and the percussion of machine gun fire in the distant, war-torn fields of France. She felt weak and feverish, and her chest weighed heavily against her body. It was 1918, and she knew it was a case of the flu she had seen spreading through the hospitals. It was strange to be in the hospital tent where she usually deposited patients, and odd to be treated by the same Red Cross nurses she worked with. It was usually Sylvia who drove the ambulance into the hospital station, and after a few more days of rest, she would return to work, fully recovered from the flu. She would return to wearing the muddy boots, the heavy belted coat with the white armband and Red Cross symbol, and to pinning her hair beneath the metal helmet. She would return to the boxy ambulance, marked with a cross, which was welded onto the frame of an automobile and cranked to start—headlights like rounded eyes, a front grate, and spoked wheels. Serving in France, she drove mostly ambulance autos, but in many places, the Red Cross was still using horse-drawn ambulances.

For a woman to be an ambulance driver in the war, she must have had a strong commitment to the cause. When it was decided more men were needed on the front lines, nearly five thousand women volunteered as drivers. They came close to the trenches, with shrapnel flying, and they gave first aid to patients before the ride to the hospital. Along the war-beaten roads there were crooked, headless tree trunks and gaping holes where German shells hit the soil with tufts of cotton-white smoke billowing above. And then the driver made the trip along ragged roads to the hospital, listening to the patients scream or moan each time the ambulance hit a hole or bump. Maintenance was also up to the driver, so women worked as roadside mechanics as well.

In fact, the involvement of women in the war helped push President Woodrow Wilson to finally support the suffragist cause—how could the thirty thousand women who enlisted in the U.S. Navy, Marines, Coast Guard, and nursing corps (military opportunities that were remanded once the war ended) be asked to defend their country without having a vote in its endeavors?

By coincidence or by fate, Wilson would have his own case of the flu in France, while negotiating the terms of peace after the war. Originally, Wilson’s attitude toward Germany had been one of leniency. He disagreed with the harsh terms France and Britain proposed in the treaty, arguing that stripping Germany bare would be like building peace upon quicksand. He warned that Germany would emerge bitter and broken, and that “only a peace between equals can last.” Wilson was so angry, he threatened several times to leave Paris altogether. But when Wilson was taken to his bed with what seemed to be a severe case of the flu, aides noticed that his personality changed overnight. One reportedly said that “something queer was happening in his mind.” He went on to say, “One thing was certain : he was never the same after this little spell of sickness.” Wilson grew increasingly paranoid and obsessive, also developing a facial tic. Biographers and physicians have examined his papers and debated the cause—whether influenza, a stroke, or encephalitis lethargica. There is no real way to know what caused the lasting damage to his brain. What was obvious, however, was his change in temperament and thinking. When he returned to negotiations, his views were reversed. He agreed to the harshest treatment of Germany, and his original prophesy of peace settling on quicksand proved to be true. Wilson’s mental decline and physical handicaps were kept a secret from the public for nearly a year and a half and would later lead to changes in the disability acts surrounding the presidency.