Stephen C. Reingold, Ph.D.
Assistant Vice-President for Research and Director of Grants Management,
National Multiple Sclerosis Society, New York City
I recently had the opportunity to address an audience of several hundred people, most of whom had multiple sclerosis, about new research findings in the disease. About half were visibly limited by their MS: they used canes or crutches, walkers, wheelchairs, or electric scooters. The master of ceremonies—a courtly gentleman deeply interested in MS, but without the disease himself announced the opening of the program with the request that all present stand for the presentation of the colors, the flags of the United States and of the state, by a local scout troop. The impact was palpable: you could feel in the air the embarrassment, frustration, and anger of those in the audience who could not respond to this simple patriotic request because of the limitations their MS had imposed upon them.
For me, this event summarized much of what it must mean to be chronically ill in America today. In this age of modern medicine, we too often tend to think of serious chronic disease in terms of medical and scientific "breakthroughs," but rarely in terms of the human dimension and the relationship of illness to the cultural setting in which an affected person must exist.
In the above drama, a well-intentioned individual acted without thinking about the limitations of his audience; he probably is still not aware of his gaffe. Yet no one in the audience could reasonably call him down; it would have been "unseemly" to do so. Rather, they simply had to accept the reality of the situation—a reality about which they have learned, in most cases, after years of dealing with MS. Acceptance is a key theme in this highly personal essay by Ms. Webster. In her terms, acceptance means acknowledgment of the conflicts that our culture and society create for chronically ill people and the realization that such conflicts will continue. Importantly, acceptance here does not imply that the conflict—or its impact—will be eliminated, nor does it preclude anger at the circumstances that generated the conflict. This is a highly humane kind of acceptance, and one that doesn't box a person into an unreasonable "never-never-land" existence.
Barbara Webster has multiple sclerosis—a fairly benign case of it by her own estimation. Her struggle with MS is fairly typical: a young woman with poorly defined symptoms bounces from doctor to doctor, with no good evaluation of what is happening and no diagnosis. Years go by, with friends and family becoming increasingly suspicious of her "sickness"; psychiatry is recommended. Finally, the diagnosis comes: multiple sclerosis. This pattern is one which many people with MS will recognize and with which they will identify.
For Ms. Webster, the diagnosis some five years ago was a "watershed" and has opened up a floodgate of highly personal reflections about herself, her disease, and her relationship to her loved ones and to society. While much of the book is clearly a self-exploration, there is no question that many people with MS and other chronic, disabling diseases will share the same feelings and reactions: she has written what many must feel but are unable to express.
There are key concepts and words repeated throughout the book: hope, denial, acceptance, uncertainty, vulnerability, dependence, adjustment. These are the issues that Ms. Webster confronts—issues she might never have had to face without the added life-burden of MS. While there are no answers here, the book is thought-provoking and probing, and forces the reader to consider critically the lot of a large segment of our population today. Chronically ill people will benefit from Ms. Webster's sharing; "outsiders" will learn about an aspect of life they may never have to face and will profit by that new knowledge.
Stephen C. Reingold, Ph.D.
I would like to thank Kevin Avruch, who first suggested that there might be a book here and whose interest and guidance were invaluable. Without him, I would not have begun this project.
Pat Nicolette lived through much of this experience with me, and he knows well what he has been for me.
Peter Black has been a constant source of support and encouragement. He patiently and carefully read each succeeding draft, of which there were many. His thoughts are interwoven with mine. Any remaining suggestion that culture is a moving force, however, is mine alone.
I would like to thank my hosts in Israel and Egypt, Bill and Sandra Brew. Without them, I never would have seen the Middle East.
Sar Levitan put food on my table (as he might say), introduced me to Jack Goellner, and is a wonderful friend and inspiration.
Jack Goellner has been the kind of editor I always imagined. His encouragement and belief that there really was something worth working on here kept me going. Whenever I felt like giving it up, one of his wonderful letters would arrive.