Asleep: The Forgotten Epidemic That Remains One of Medicine's Greatest Mysteries (28 page)

Virginia went on to marry and have four children, but she was never normal. She seemed distracted and lost, and it was whispered among family members that she had been that way since the great sleeping sickness epidemic. She was described as mentally “touched.” It must have been frustrating for her family in an era that did not acknowledge or treat mental illness openly. Indeed, her parents may never have even known the extent of her affliction. The neuropsychiatrists of the 1920s would have found an injured brain and a broken mind, but the only doctor Virginia saw, a family practitioner, was in no position to diagnose chronic symptoms of epidemic encephalitis. It would not have mattered if they had known—nothing could be done for Virginia or any patients like her.

Had Virginia’s mind been more intact, she most likely would have been diagnosed with severe depression. As it was, she did not even seem aware enough of her own thoughts or feelings to be cognizant of her unhappiness. Her mind was but a shade of the color it once was. Oliver Sacks described it best in
Awakenings:
“One can only say that most of the survivors went down and down, through circle after circle of deepening illness, hopelessness, and unimaginable solitude, their solitude, perhaps, the least bearable of all.”

B
y the time I knew Virginia, it was five decades after her long sleep. She was thin, with a shock of black hair that silvered over time. Her eyes were as dark and glossy as blackbirds, and they always seemed fixed on something in the distance. She was a woman I had known most of my life, but felt I barely knew.

Virginia’s behavior at times was almost humorous, the same way senility in its early stages can seem odd but harmless. At other times, it was just sad. She read newspapers and worked crossword puzzles, but left her apartment only to go to church or the beauty parlor. She drifted in and out of conversations without warning. She would look at a dark wall for hours, the ash on her cigarette sifting off in soft gray pieces.

It could have been much worse. She could have been among the third of patients who died, or even worse, the third who spent their lives in institutions, damaged beyond repair. I had always assumed Virginia was lucky to survive her case of sleeping sickness and live a normal life. It was not until writing this book that I realized she probably did spend her life somewhere else, in that distant place only she could see, if not imprisoned physically, then mentally. What’s worse, she always felt alone, but was not. Others like her survived and many in much worse condition. History let them go, and medicine remained asleep for far too long on the subject.

Virginia died in 1998. I was not living near her, so we spoke on the phone the night she went into the hospital, just hours before she passed away. I tried to memorize details about my grandmother—the smell of her lotion, the way her wrinkled hands felt like tissue paper. Knowing it was our last conversation, I also tried to find some connection, something to keep and remember—but there was only the hollow place sleeping sickness had left behind.

ACKNOWLEDGMENTS

I have two people to thank for inspiring me to write this particular book. My grandmother Virginia Thompson Brownlee survived sleeping sickness—and though she did not live to see the publication of this book, my hope is that she would find it an honest and unflinching portrayal of the disease. And, second, I want to thank Dr. Oliver Sacks. Without his work at Beth Abraham, the story of this epidemic would be buried even deeper in the archives of medical history, and the most poignant element—the patients—would never have been able to bear witness to the tragedy. I also want to thank Dr. Sacks for taking the time on a frigid morning in New York to meet with me and talk about this long-forgotten epidemic, and his assistant, Kate Edgar, for all of her help.

There were many historical collections I relied upon when researching this book. In particular, I would like to thank Stephen Novak and Henry Blanco in the Archives and Special Collections at Columbia’s Augustus C. Long Health Sciences Library and Arlene Shaner in the Rare Book Room of the New York Academy of Medicine. Without their dedication to medical history, stories like this one could never be told. I would also like to thank Steve Weber at the Kings Park Museum for not only giving me a tour of Kings Park, but also sharing many details and photographs.

I want to offer my gratitude to the physicians and medical historians still dedicated to understanding this mysterious disease. In particular, I would like to thank Dr. Russell Dale for taking the time to answer questions and read certain passages from the book. I would also like to thank Dr. Joel Vilensky for many e-mail exchanges on the subject and for sharing documentary footage. And I want to thank Dr. Kenton Kroker for his thorough research and excellent article about the epidemic in New York and its effect on American neurology.

Very special thanks to David Everett, Associate Program Chair of the Master of Arts in Writing Program at the Johns Hopkins University. He read and edited an early draft of the manuscript. His thoughts and suggestions were invaluable to me, and the book is much improved for having crossed his desk. Ten years ago, David was my thesis adviser in the program and working with him again reminded me how much a writer can learn from a great teacher.

I also want to thank my agent, Ellen Geiger, and my editor at Berkley, Natalee Rosenstein, for their continued loyalty and confidence in me. And special thanks to Michelle Vega for her tireless effort and for answering endless e-mails from me.

Many friends and family members have offered their encouragement and friendship during the last few years. I want to thank personally Allison and Andy Cates, Margaret McLean, Tessa Hambleton, Lauren Kindler, Claire Davis, Jennifer Fox, Davida Kales, Elizabeth Levine, Candice Millard, Amanda and Cameron Jehl, and Temple Brown. I would also like to thank Holland Farrar, Tomas and Anne Ruiz, and Mark Crosby for entertaining me during my many research trips to New York. Special thanks to Mark for accompanying me on some of my research excursions as well—not many people would be willing to spend an afternoon wandering around an abandoned insane asylum.

I want to thank my in-laws, Nancy and Glenn Crosby, who attended nearly every speaking engagement and book signing I gave—their love and encouragement have been steadfast.

Liz Crosby, Meg Crosby, and Scott Crosby have given me their unwavering support as well. And Glenn Crosby, a neurosurgeon, was kind enough to read through some of the technical sections of the book. I am lucky to have them not only as family, but also as friends.

And, as always, I am so grateful for my parents, Tom and Betsy Caldwell, and my sister, Lindsey, who have given me their unconditional love and support in this as in everything.

For their imagination, intelligence, and energy, I thank my two daughters, Morgen Caroline and Keller Elizabeth. Morgen, who writes two or three short stories a day, could have finished this book in half the time it took me, and Keller, though not yet steady with a pen, is a prolific verbal storyteller. They inspire me each and every day.

And to my husband, Andrew—thank you. Without your support, time, patience, insight, and encouragement, none of this would be possible.

NOTES

EPIGRAPHS

The Oliver Sacks quote in the author’s note is from the foreword to
Awakenings
(1990 edition). Constantin von Economo’s introductory quote is from his book
Encephalitis Lethargica,
published in English in 1931. The second introductory quote, by Oliver Sacks, is again from
Awakenings,
appendices.

PROLOGUE: INSIDE

Most of the information in the prologue came directly from family accounts. Unfortunately, my grandmother had already passed away by the time I was writing the book, so I never had the opportunity to ask her any specific questions. However, her experience was a fairly typical one, even a positive one in that she survived with minimal damage and was never institutionalized.

CASE HISTORY ONE

Chapter 1: An Epidemic Begins

Details about the battle of Verdun were taken from several sources: Britannica; a PBS documentary entitled “The Great War and Shaping of the 20th Century,” aired in 1996; Sir Alistair Horne’s book
The Price of Glory
(1994); Jon E. Lewis’s
The Mammoth Book of Eyewitness World War I
(2003); and John Keegan’s
The First World War
(2000).

The quotations about the French dispatches came from Lewis’s book, pages 194—95. The estimate about the number of casualties at Verdun—700,000—was consistent in Britannica, the PBS documentary, and Horne’s book. The strange image of horses wearing gas masks during chemical battles came from a photograph on
www.sciencemuseum.com
.

Stanley Weintraub’s
Silent Night
(2001) provided the details about the 1914 Christmastime truce on pages 43-44 and 55.

Physical observations about the battle, horse-drawn ambulances, and field hospitals came from photographs found in my sources or additional online image collections.

The majority of information about Jean-René Cruchet’s original cases came from Constantin von Economo’s account in
Encephalitis Lethargica
(1931) and an article he published, “Cruchet’s Encephalomyelite and Epidemic Encephalitis Lethargica,”
Lancet
(1929). Von Economo maintained that Cruchet’s diagnosis of encephalitis, even if it appeared a few days before his own, was too broad and generalized to recognize the outbreak as one single disease, while von Economo himself was the one to identify the disrupted sleep patterns as the common link.

The last sentence in chapter 1 includes the phrase, “By definition, that made it an epidemic.” Most definitions of an epidemic refer to an outbreak among a large number of people at the same time. However, the term can also be applied to one or two isolated patients when new cases of a certain disease occur in a given human population during a given period. In fact, the reemergence of an infectious disease or a single urban case of a disease like yellow fever can be considered an epidemic because of the potential danger.

Chapter 2: Constantin von Economo

Biographical information about von Economo was published in a book by his wife and Julius Wagner-Jauregg,
Baron Constantin von Economo
(1937), which included details like the types of books von Economo kept on his nightstand, as well as all quotes attributed to him. Interestingly, S. E. Jelliffe wrote the foreword to the book. Facts about Wagner-Jauregg’s Nobel Prize win in 1927 can be found on
www.nobelprize.org
. His most famous studies dealt with using fever—in this case malaria—to treat mental illnesses like neurosyphilis.

Von Economo’s quote about quitting flying for medicine came from his wife’s book, page 26.

Von Economo, in
Encephalitis Lethargica,
recorded the full account of how he came to identify the disease, the history of “nona,” and his findings. Tilney, Jelliffe, and Sacks all referred to the nona epidemic in their own writings.

I also consulted an article by J. M. Pearce, “Baron Constantin von Economo and Encephalitis Lethargica,”
Journal of Neurology, Neurosurgery and Psychiatry
(1996).

Chapter 3: The London Outbreak

Descriptions of the battle near the river Somme can be found in the PBS series
The Great War
(1996) and John Keegan’s
The First World War
(2000).

The account of a British private, named Henry Tandey, encountering a wounded Adolf Hitler on the battlefield was taken from “The Man Who Didn’t Shoot Hitler,” by Gary Smailes,
www.victoriacross.wordpress.com
(March 12, 2007) and “Victoria Cross Heroes: Private Tandey Spared the Life of a German Soldier,”
Birmingham Post
(July 31, 2004). The story also appears in other World War I accounts, but has never been proven factual. However, according to the accounts, not only Tandey, but also Hitler recounted the tale to contemporaries. Hitler purchased a painting of the battle, pointing out Tandey’s image in the portrait and explaining that the British private had spared his life.

All information about Hitler’s illnesses and wounds during World War I—particularly the theory that he may have had encephalitis lethargica—came from three articles: P. P. Mortimer’s “Was Encephalitis Lethargica a Post-influenzal or Some Other Phenomenon?”
Epidemiology and Infection
137 (2009); J. Walters’s “Hitler’s Encephalitis: A Footnote to History,”
Journal of Operational Psychology
6 (1975); and A. Lieberman’s “Adolf Hitler Had Postencephalitic Parkinsonism,”
Parkinsonism and Related Disorders
2 (1996). Additional details about Hitler’s health can be found in Robert G. L. Waite’s
The Psychopathic God
(1977).

Theories about food poisoning and botulism when encephalitis lethargica first hit London were reported in the London Times on January 7, 1919, and January 23, 1919.

Peretz Lavie, in
The Enchanted World of Sleep
(1996), suggested that the tales of Sleeping Beauty and Rip van Winkle might have been based on epidemics of encephalitis lethargica, pages 239—40. Oliver Sacks, in
Awakenings,
also referred to his patients as Rip van Winkles and Sleeping Beauties, page 65. There is no documented evidence that Edgar Allan Poe’s short stories were based on encephalitis lethargica. However, as Lavie points out, no other disease causes deathlike sleep and eventual waking. After all, these patients were not in a coma; they were sleeping and could usually be roused for short periods of time. The great epidemic did inspire some new stories during the 1920s as well, including one reviewed in the
New York Times
called “A Romance of Two Centuries” about a captured man who is given a sleeping sickness germ and does not wake until 2025.