Breathing Room

by Marsha Hayles

  In the past, the unpredictable nature of the disease made it hard for doctors to evaluate various treatments. For example, an operation might bring about a recovery for one patient, but the same procedure in a different patient might have no effect or even cause harm. Was the operation a success or a failure? Chances are, neither. The disease was just following its own course, independent of the operation or the doctor’s care. In Breathing Room, Dena and Sarah both receive a popular treatment of the time—the pneumothorax, called a “pneumo” by the patients. The goal was to blow air into the chest in order to flatten the lung and give it a rest. In the story Sarah also weathers a thoracoplasty, an operation in which ribs were removed to allow the lung to collapse and rest. In other operations, nerves to the chest area were cut and, in extreme cases, part or all of a lung might be removed. By today’s medical standards, many of these operations would be considered questionable since no scientific evidence justifies their risks—everything from disfigurement to blindness to death.

  But before antibiotics were available, patients with tuberculosis had few choices. A diagnosis was a virtual death sentence, made worse by the knowledge that the patient was contagious. Then, in the late 1800s, several doctors made the observation that patients seemed to get better after spending time outside, usually in a cold climate. Almost overnight, special centers called sanatoriums opened all over the world to isolate and treat people suffering from tuberculosis. In the United States, Dr. Edward Livingston Trudeau—himself a sufferer of the disease—established the country’s most famous sanatorium at Saranac Lake in the Adirondack Mountains of New York. Other private and public sanatoriums of all sorts and philosophies dotted the country to meet the needs of so many sick people.

  Patients “chased the cure” and flocked to these sanatoriums to spend winters outside in cure chairs—now commonly called Adirondack chairs—with the hopes of getting better. Some of these facilities were built with long outdoor porches, called verandas, where patients rested in beds. Most of the patients’ rooms had large windows, kept open even in the coldest of weather. Many sanatoriums, like the one imagined in Breathing Room, were large complexes, often built in a remote and beautiful setting. Some had their own dairies or small farms to provide fresh milk and vegetables for the patients. Other sanatoriums were smaller, run more like a boarding house than a medical facility.

  The one thing all sanatoriums had in common was the absolute conviction that rest was the key to the cure. Patients were ordered to remain in bed on their backs for months or years. Stories of patients living as long as twenty years on bed rest were not uncommon. Eventually if the patient improved, some activity would be allowed, but usually under strict medical supervision.

  Doctors and staff took the business of resting very seriously, perhaps too much so. In the majority of firsthand accounts by former patients, doctors and nurses are remembered as cold, controlling, and unsympathetic. Certainly there were exceptions, chief among them Dr. Trudeau, but doctors and nurses (often former TB patients themselves) were not generally described with great affection. According to Dr. Frank Ryan in his book The Forgotten Plague, one doctor in Scotland was known for saying of his young female patients: “Here you are, a collection of rosy apples, all rotten at the core.” I adapted this line for my novel as a way of showing the cruelty some in authority displayed for those suffering from the disease. Fortunately, not all the sanatorium staff adopted such a negative, heartless attitude. But even the best medical care could not relieve the patients’ relentless boredom: endless days with nothing to do other than lie there. Sanatorium gossip, the occasional visitor (some sanatoriums were stricter about visits than others), a special event such as a concert or movie, or the disheartening news of a fellow patient taking a sudden turn for the worse might be the only events to break up the monotony of the daily routine.

  Though no accurate statistics about the survival rate of sanatorium patients are available, some think that as many as one in four patients died and as many as half the patients died within five years of leaving the facility. In fact, evidence suggests that the patients in sanatorium care had no greater a survival rate than those who remained at home. But because contagious patients were isolated, the sanatorium movement probably did reduce the spread of the disease in the general population. And since tuberculosis often struck those already weakened by hunger or poor living conditions, sanatoriums—with their emphasis on cleanliness and a high-calorie diet—might have given some patients a better chance for recovery. But in the end, most of the strict rules the girls in Breathing Room had to follow probably made little difference in the outcome of their diseases.

  In writing Breathing Room, I chose to include several references to author Robert Louis Stevenson and his poems. Stevenson himself suffered from tuberculosis and received treatment at Saranac Lake in the Adirondacks, though he eventually died from the disease. But two interesting coincidences involving other famous people cropped up as I worked on the novel. I wanted the character of Dena to take a liking to poetry and to have a favorite poem. But which poem? In searching through a 1938 poetry anthology (actually owned by my mother when she was in high school), I found a poem called “Invictus” by William Ernest Henley that conveyed Dena’s thoughts and determination. Only later did I find out that William Ernest Henley also suffered from tuberculosis. In fact, he wrote “Invictus” as he fought to keep the doctors from amputating his leg. (He had already lost part of his other leg to the disease.) I was surprised to learn that Henley was a close friend of Robert Louis Stevenson’s and, with his red hair and partially amputated leg, Henley served as the inspiration for one of Stevenson’s most memorable characters, Long John Silver in Treasure Island.

  I also chose to include in Breathing Room talk about the most popular film of the day, Gone with the Wind. Only after I finished writing the book did I learn that the actress Vivien Leigh, who played the role of Scarlett O’Hara, suffered from pulmonary tuberculosis for years and, like one of my novel’s characters, died from complications following a lung hemorrhage.

  On a more personal note, I had several reasons for writing a book about tuberculosis. First, though I never had active tuberculosis or was ill with the disease, I had to take a year of medicine as a preventive treatment after a tuberculin skin test turned up positive. Had I lived forty or fifty years earlier and gotten sick, I might well have found myself at a sanatorium. Secondly, I grew up in Rochester, Minnesota, where my father was a pediatrician at the Mayo Clinic and where, in 1944 to 1945, Dr. Corwin Hinshaw first treated TB patients effectively with the drug streptomycin. Dr. Hinshaw later went on to win the Nobel Prize in Medicine for his work. Though I never knew Dr. Hinshaw, the surgeon who supervised the care of the first patient treated with this new drug was my neighbor, Dr. O. T. “Jim” Clagett. Also, Dr. Alfred G. Karlson, the father of my best friend from childhood, was a microbiologist who studied tuberculosis and did important work on streptomycin and the other drugs that proved effective in combating the disease.

  Finally, as a child I was a great fan of Betty MacDonald’s books, especially Nancy and Plum and the Mrs. Piggle-Wiggle series. Later, as an adult, I discovered her book The Plague and I, her account of her time in a sanatorium. That book inspired me to learn more about tuberculosis and to imagine the challenges of sanatorium life for a young person. I found out that in Minnesota alone, every county had a sanatorium. Yet once tuberculosis could be treated, and in many cases cured, with antibiotics, the sanatoriums quickly closed in the 1950s and the stories of all those Evelyns, Sarahs, Denas, Beverlys, and Pearls were lost. Perhaps no one wanted to look back on such a sad time. Or, more likely, once the Japanese bombed Pearl Harbor on December 7, 1941 (just months after the close of the novel), the nation focused its energies on winning the Second World War. In writing this book, I hoped to give those forgotten girls a chance to breathe again.

  NOTES ON THE IMAGES

  FRONTISPIECE

  As part of President Franklin Delano Roosev
elt’s New Deal program, the Works Progress Administration (WPA) created this poster to encourage the public to eat healthy foods as a way to fight tuberculosis.

  CHAPTER 2

  The Rochester State Hospital in Rochester, Minnesota, the author’s hometown. The structure no longer stands. [History Center of Olmsted County, Minnesota]

  CHAPTER 4

  X-rays were used both to diagnose tuberculosis and to monitor the progress of the disease. This is an X-ray viewing room at the Triboro Hospital for Tuberculosis on Parsons Boulevard in Jamaica, New York. [Library of Congress, Prints and Photographs Division, Gottscho-Schleisner Collection, LC-G612-T-39094]

  CHAPTER 5

  A standard bedpan of the day, photographed at the Mayo Clinic Historical Unit, Rochester, Minnesota.

  CHAPTER 6

  Sputum cups—disposable ones that were burned or reusable ones that needed to be disinfected—were used daily at sanatoriums to collect patients’ phlegm. Outside the sanatorium, nearly every community had some kind of law and a hefty fine for spitting in public to prevent the spread of tuberculosis. This advertisement was taken from Journal of the Outdoor Life, a magazine for patients seeking the cure in Saranac Lake, New York, the home of America’s sanatorium movement. [Journal of the Outdoor Life (March 1933), courtesy of the Trudeau Institute, Saranac Lake, New York]

  CHAPTER 7

  Cod-liver oil, a rich source of vitamin D, was often given to children despite its strong fishy flavor. [Courtesy of the Lung Association of Saskatchewan]

  CHAPTER 8

  After completing my novel, I found this photograph, taken in 1941, of a ward room at the Triboro Hospital for Tuberculosis in Jamaica, New York. This is exactly how I imagined the room where Evvy and the other girls lived. [Library of Congress, Prints and Photographs Division, Gottscho-Schleisner Collection, LC-G612-T-39046]

  CHAPTER 9

  Patients’ temperatures were taken at least twice daily to monitor their condition. To get an accurate temperature, the thermometer would need to be in the patient’s mouth for at least five minutes, sometimes longer. [Journal of the Outdoor Life (March 1933), courtesy of the Trudeau Institute, Saranac Lake, New York]

  CHAPTER 11

  The headline from a June 14 , 1940, Minnesota newspaper. [Courtesy of Library of Congress, permission from the Minneapolis Star Tribune]

  CHAPTER 11

  A poster created by the National Tuberculosis Association (now the American Lung Association) to promote sales of its Christmas Seals, which served as a source of money to fight tuberculosis. [National Tuberculosis Association posters used with permission © 2011 American Lung Association. www.LungUSA.org]

  CHAPTER 12

  A U.S. postage stamp commemorating the 1939 World’s Fair held in Queens, New York.

  CHAPTER 13

  Louis Armstrong, one of the most important jazz musicians of the twentieth century, was famous for his dazzling trumpet playing and his distinctive, gravelly singing voice. [William P. Gottlieb Collection, Music Division, Library of Congress, with appreciation to the Louis Armstrong Educational Foundation, Inc.]

  CHAPTER 14

  A hospital gurney (a stretcher on wheels) transported patients not able to sit upright in a wheelchair. [Courtesy of Urban Remains LLC]

  CHAPTER 15

  Fluoroscopy allows moving X-ray pictures to be taken of a patient’s lungs. [Library of Congress, Prints and Photographs Division, Gottscho-Schleisner Collection, LC-G612-T-39097]

  CHAPTER 17

  The author grew up in Rochester, Minnesota, home of the world-famous Mayo Clinic, and recalls seeing signs like this one posted on streets around local hospitals. [Used with permission of the Mayo Foundation for Medical Education and Research, all rights reserved.]

  CHAPTER 21

  This drawing shows the two bottles used during a pneumothorax procedure. Pressure from the water in the elevated bottle pushes air from the lower bottle through the tubing connected to a needle. By measuring the drop in the fluid, the doctor would know how much air had been injected into the patient. [Courtesy of the Lung Association of Saskatchewan]

  CHAPTER 21

  A doctor and nurse perform a pneumothorax on a patient suffering from tuberculosis. The doctor would insert a needle into the small space between the patient’s lungs and rib cage, then pump in air. The air from the machine pushed the infected lung down, making it flat. (In a similar—and even stranger—procedure, some doctors surgically inserted Ping-Pong balls into the small space to keep the lung down.)

  Without air moving in and out of the lung, the bacteria’s growth was hampered. But the procedure needed to be repeated routinely because over time the air would leak out of the space and into the rest of the body. Although pneumothorax procedures were commonly done at sanatoriums, they came with serious risks, including the danger of pushing air into a blood vessel and causing a stroke—or possibly death. [Courtesy of the Lung Association of Saskatchewan]

  CHAPTER 22

  Hot water bottles—nicknamed “pigs” because old-fashioned ones made of earthenware looked like pigs—were eventually made of heavy rubber and filled with hot water to provide warmth to bedridden patients.

  CHAPTER 27

  St. Paul Winter Carnival, a Minnesota tradition since the 1880s.

  CHAPTER 28

  Christmas Seals sold by the Tuberculosis Association raised money for the research and treatment of the disease. [National Tuberculosis Association posters used with permission © 2011 American Lung Association. www.LungUSA.org]

  CHAPTER 30

  A WPA poster reminds people of the dangers of tuberculosis.

  CHAPTER 31

  A poetry anthology used by the author’s mother in high school during the 1930s. [Monroe, Harriet, and Morton Dauwen Zabel, editors. A Book of Poems for Every Mood. Illustrated by Janet Laura Scott. Racine, WI: Whitman Publishing Co., 1933]

  CHAPTER 34

  [Author’s collection]

  CHAPTER 36

  The Dionne Quintuplets, born in 1934, became instant celebrities. Their images were used to sell everything from toothpaste to corn syrup. Here they are posed with Dr. Allan Roy Dafoe, the country doctor who delivered them and became their legal guardian. [Courtesy of N.E.A. Service Inc./Library and Archives Canada/PA-026034]

  CHAPTER 37

  The University of Minnesota was established shortly after the Civil War in Minneapolis, Minnesota.

  CHAPTER 38

  This photograph—taken of a corridor at the Triboro Hospital for Tuberculosis in Jamaica, New York—captures the often dark and lonely mood at a sanatorium. [Library of Congress, Prints and Photographs Division, Gottscho-Schleisner Collection, LC-G612-T01-39053]

  CHAPTER 42

  An illustration by Jessie Wilcox Smith for “The Land of Counterpane,” a poem by Robert Louis Stevenson from his book The Child’s Garden of Verses. Stevenson, author of Treasure Island and Kidnapped as well, suffered from tuberculosis and spent time “chasing the cure” in Saranac Lake, New York.

  AUTHOR’S NOTE

  This photo shows girls resting at a tuberculosis sanatorium in Canada. I discovered this photo only after the novel was completed; I almost felt as if it could have been taken of Evvy and the girls at Loon Lake. [Author’s collection]

  ACKNOWLEDGMENTS

  I turned to many sources to learn about tuberculosis and the sanatorium movement. Medical librarians at the University of Rochester School of Medicine, SUNY Upstate Medical University, the University of Buffalo, and the Mayo Clinic helped me gather background materials, as did reference librarians in the Monroe County Library System of Rochester, New York.

  To gain a broader understanding of the actual disease and the sanatorium movement, I found three books particularly helpful: Barbara Bates’s Bargaining for Life: A Social History of Tuberculosis, 1876–1938 (Philadelphia: University of Pennsylvania Press, Inc., 1992); Mark Caldwell’s The Last Crusade: The War on Consumption, 1862–1954 (New York: Atheneum, 1988); and The Forgotten P
lague: How the Battle Against Tuberculosis Was Won and Lost by Frank Ryan, M.D. (Boston: Little, Brown and Company, 1993).

  I also read many books written in the 1920s, ’30s, and ’40s about tuberculosis. These books, though often helpful, tended to focus more on the doctors who worked to fight the disease than on the experience of those who suffered from it. Therefore, I must also thank my friend Jennifer Meagher for introducing me to Theresa Loudin, who spent time in her youth at a sanatorium. Her first-person account, along with those written by Betty MacDonald, Isabel Smith, and others, gave me a richer sense of the day-to-day life sanatorium residents experienced.

  Later, when I needed to obtain specific photographs to include in the book, I received help from Michelle Tucker at the Saranac Lake Free Library and from Kelly Stanyon at the Trudeau Institute, both in Saranac Lake, New York, as well as from Renee Ziemer at the Mayo Clinic Historical Unit in Rochester, Minnesota. I must also thank Cynthia Swope, a librarian at the U.S. National Library of Medicine, for helping me check information and locate photos. Librarians at the Library of Congress—especially Gary Johnson—found several key images for the book. Brian Graham, the CEO of the Lung Association of Saskatchewan, assisted me in obtaining the rights to use several images I found on the Canadian Lung Association’s invaluable collection of digitized photos (www.lung.ca/tb/index.html), including my favorite picture of the girls “taking the cure” on the balcony of a sanatorium (included in the Author’s Note, here). I also benefitted from the assistance of the American Lung Association, Urban Remains LLC, and the History Center of Olmsted County, as well as from the generous kindness of the Louis Armstrong Educational Foundation, Inc.