Living in the shadow of death: tuberculosis and the social experience of illness in American history

Living in the Shadow of Death: Tuberculosis and the Social Experience of Illness in American History Sheila M. Rothman. 319 pages. New York: BasicBooks; 1994. $25.00. The resurgence of tuberculosis has already inspired the publication of several relevant medical texts. Two books have now been written for the general public: Ryan's The Forgotten Plague, published in 1993, and this new book by Sheila Rothman. Ryan's book deals with the origins and birthpains of chemotherapy for tuberculosis; Rothman depicts the human drama of the disease. Rothman is the Director of the Program on Human Rights and Medicine at Columbia College of Physicians and Surgeons and holds a PhD in history and an MA in philosophy and sociology. Quoting from an extensive collection of manuscripts, letters, diaries, medical papers, and books, Rothman takes us back to the early 19th century in her descriptions of the ravages of tuberculosis at the height of the pandemic, emphasizing the plight of the invalid in New England. In this part of the narrative, she skillfully blends history, sociology, ethics, and medical science. The intricate personal situations of patients are portrayed against a background of medicine as it was practiced then. Without benefit of active drugs or surgical procedures, therapeutic efforts revolved around providing salubrious climatic conditions, rest, and good food. There were extensive disagreements about the relative benefits of sea voyages and trips on horseback, rest and exercise, and desert heat and mountain freshness. Well described is the life of a young invalid faced with career choices when seeking health became a primary concern. The author vividly portrays the effect of tuberculosis on society, family life, personal activities, and the workplace. Men and women were afforded different treatment: Men left home for sea voyages and horseback trips; women pursued their household duties as best they could with the help of female family and friends. Of course, most of the author's information was gleaned from the archival correspondence of young persons from Ivy League colleges and well-established families. Few letters written by poor people have been preserved in historical collections. This section of the book suffers a bit from the seemingly endless repetition of patients' symptoms (cough, hemorrhage, shortness of breath) and, with occasional remissions, inexorable progressions to death (as her disease progressed, as Deborah's symptoms grew more severe, as her disease entered its final, terminal stage). Deborah actually died twice, once in each of two chapters. One of the best sections clearly describes the activities of the health-seekers who went to Colorado and the desert areas of the southwestern United States. In some areas, most of the population consisted of persons who remained with their families after migration for health reasons. Great media and literary hype included fantasies about the curative powers of pure dry air, horseback riding, buffalo meat, and outdoor life. There was great competition to attract health-seekers to California, the Rocky Mountains, El Paso, and, later, to the Adirondack Mountains. Rothman gives a fascinating description of a sick patient's horse-drawn wagon journey from Plattsburgh, New York, to Paul Smith's remote, rugged hunting lodge. The rough wooden lodge burned down several times, and on its site just north of Saranac Lake now stands Paul Smith's College. The interest of physician-readers will be stimulated by the historical events described in chapter 12, in which Robert Koch is introduced. His discovery of the tubercle bacillus in 1882 offered a diagnostic test for and an understanding of the contagiousness of tuberculosis. Public health officials could then devise activities to control the disease. Phthisiophobia became widespread. (I can remember cars passing through Saranac Lake with windows closed and handkerchiefs covering noses and mouths.) California, which had actively courted persons with tuberculosis to its reputedly salubrious climate, now attempted to ban them altogether. The sanatorium movement in both Germany and the United States is well described, as is the change from the active invalid to the passive patient, and from vigorous outdoor life to a life of rest and curing under strict medical supervision. Superb accounts of sanatorium life in the era before chemotherapy are included. The emotional highs and lows accompanying the waxing and waning of tuberculosis are revealed dramatically in the quotes from Isabel Smith (who eventually died), and other long-suffering patients. To one who experienced sanatorium life both as a patient and as a physician, the narrative brought back memories of the good and the bad. The village of Saranac Lake became a haven for patients with tuberculosis seeking the cure; there were many private cure cottages and a ring of sanatoriums outside of the village, including Trudeau, Ray Brook State Sanatorium, the Will Rogers Hospital for entertainers (theater productions, concerts, and movies were regular events), Gabriels, and Stony Wold, which was located at the end of a railroad spur on beautiful Lake Kushaqua, reputedly full of trout. Some famous patients were Christy Matthewson and Larry Doyle of baseball fame, Robert Louis Stevenson, and Bela Bartok. They were cared for by several physicians, including Francis B. Trudeau, the son of Edward Livingston, who could be seen bustling about spreading good cheer and carrying the patients' portable pneumothorax machines. The exciting events surrounding the era of chemotherapy, beginning in 1945, and the visions of eradication of tuberculosis that were shattered temporarily in 1989 when tuberculosis reappeared with the acquired immunodeficiency syndrome (AIDS) pandemic are covered briefly in the short epilogue. Living in the Shadow of Death is a beautifully written account of the history of tuberculosis from a different viewpoint. It fills a void in our appreciation of the effect of the disease on people, mores, the social structure of civilization, population shifts, and economics. The book was thoroughly and professionally researched, is easy to read, and should be highly satisfactory to laypersons and professionals alike. Perhaps it will also help our public health officials understand and better cope with the realities of tuberculosis today.