Living in the Shadow of Death
- Aull, Felice
- Date of entry: Jan-30-1997
- Last revised: Jan-20-2010
Subtitled "Tuberculosis and the Social Experience of Illness in American History," the book chronicles the medical and societal treatment of tuberculosis in the United States from the perspective of individuals who suffered from the disease. The author includes illness narratives derived from letters and diaries of the afflicted; her analysis spans the period in American history from the nineteenth through the first half of the twentieth century.
The book is divided into four sections. Part I, "The Invalid Experience: New England Men, 1810-60" and Part II, "The Female Invalid: The Narrative of Deborah Vinal Fiske, 1806-44" reveal an interesting contrast in the medical/societal treatment of tubercular men and women, and the resulting differences in their lives as "consumptives." Whereas men were expected to seek a cure by embarking on sea voyages and other travel, women remained at home and sought to control the disease by adjustments in domestic life. For men this meant major disruption and even change of career along with a sometimes exhilarating change of scene; for women it meant relentless anxiety and elaborate coping strategies.
Part III, "Health Seekers in the West, 1840-90" describes the role of cure-seekers in the westward migration and demonstrates how the culture of the time, an optimistic faith in nature and in the economic promise of the newly settled western territories, was reflected in the treatment regimen for tuberculosis. Interestingly, much of the promotional effort to bring "consumptives" west was initiated by physicians who were themselves tubercular.
The final section, "Becoming a Patient, 1882-1940," moves into the modern era with the discovery of the tubercle bacillus, public health measures, and the illness narratives of people who were confined in sanatoriums. Rothman points out that this period marked a transition away from the patient’s ability to understand and determine his/her treatment to one more like the current one in which the medical establishment is the authoritarian "expert."
Harper Collins: Basic
Rothman’s book is interesting for several reasons. In providing a historical overview of chronic illness and infectious disease from the patient’s perspective it demonstrates the wide ranging response of human beings to the experience of life-threatening and chronic disease, as well as of the role played by societal expectations and custom in determining both experience and outcome.
The patient narratives are particularly powerful; perhaps most striking is the nineteenth century voice of Deborah Fiske, who spent a great deal of time and effort to prepare her children for the future, in anticipation of her inevitable (but at the time indeterminate) death. Acceptance of the inevitable and the planning for it are in striking contrast to modern concepts of restoration of health as a right, to be obtained by heroic and costly medical interventions if necessary.
Also poignant are the narratives of those who sought cures in or were relegated to the sanatorium. Stigma, exclusion, and the experience of institutionalization as both imprisonment and release from responsibility are all relevant to the human issues in present-day discussions of health policy.