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Today's fairy-tale ethos of American childhood, according to which children are meant to live happily ever after, not to die too soon, reckons poorly with serious childhood illness. The notion of a child dying makes a discernible bump on the cultural Richter scale, putting off-kilter our sense of things, unbalancing the scales of justice. Health care, in our culture, is meant to banish death until its due hour at a ripe old age, if it must arrive at all. Children are to be protected, and we are sickened when they are not.1 Child-serving charities, such as the Make-A-Wish Foundation and its many compatriots, are prone to redress terminal disease through means of altered reality-by gifting young patients with a "wish come true" during their remaining months of life. Wishes might involve visiting Disney World, or meeting a famous athlete, a movie star, or the president, as well as (in one case I know) breaking the world's record for the number of get-well cards received. Adults, who have survived longer yet so often live life less intensely than do children, face an existential dilemma when confronting fatal childhood illness.2 When life can end so soon, in a manner so morally unjustified, we mature beings are made to grapple with our own tenuous aliveness. If children can be cut down by death, so can any one of us. In the face of an ill child, we somehow want to rebalance the scales. Granting the last wishes of a child is a last resort to subvert death's insinuations.
But what about the child who carries a lasting, medically treatable chronic condition, an illness a child must learn to live with rather than die from? This child, of course, also deserves attention and compassion. Diabetes and severe asthma, the two examples dealt with in this book, involve daily treatments, pervasive adjustments in lifestyle, spells of physical suffering, and symbolic threats to essential life needs (that is, breath or nourishment). Fears and indignities lurk and seep into the childhoods of those with asthma or diabetes, spreading unhappily over the ordinary routines of upbringing. Chronic illness, as will be documented in this book, affects many, many children.3 Children with chronic illness, according to numerous studies, are at greater risk than others of developing mental health or social adjustment problems.4 And the impact of childhood chronic illness is not diminishing. Asthma, a particularly prevalent childhood disorder, has been gaining ground in both incidence and fatality in recent years.5
As this book will chronicle, the reality of chronic illness can be harrowing both for children and for their families. Yet there is also heartening news. The challenge of chronic illness is one that families can and regularly do rise to meet. The ordeal can be surmounted, partly because children have impressive capacities to imagine and transcend what cannot be cured. A young girl might fancy that her blood-check device used in the treatment of diabetes represents a blood-sucking polar bear with a prickly "kiss." A boy with diabetes might fantasize that the insulin-filled syringe, with its lines of demarcation, is a zebra. Children do not need Mary Poppins's wizardry to make the medicine go down, for they cast their own spells on illness to make the suffering and treatment more bearable. Children use pretend play, story, ritual, and humor, as well as trusted playthings, to work for themselves the kind of "nursery magic" by which the fictional Velveteen Rabbit soothed illness. Children serve as their own shamanic healers, as the ultimate child-life specialists, through the phenomenon of imaginal coping.
The explorations I recount in this book were conducted in the homes and summer camps of young children with severe asthma or diabetes, in their own social domains, where they could give voice to their own ways of experiencing chronic illness.6 Diabetes and severe asthma, illnesses requiring in-home treatment outside the clinical or hospital setting, comprised my subject. I was attracted to studying these illnesses because they significantly affect the lives of children at home more than at the hospital. Past research on children's illness mainly has used a hospital or clinic setting, each a cultural location that foregrounds or emphasizes the biomedical treatment process and affords children little privacy.7 Teaching hospitals, in particular, have been accessible sites for much research among children. Yet teaching hospitals are apt to be outstanding, rather than typical or representative, in their treatment of a child's medical needs and often have available the services of a child-life worker who addresses the child's total needs, including emotional distress.8
My project was grassroots based, carried out in forty-six urban and suburban homes of diverse social class and ethnicity in the Chicago metropolitan area during the mid-1990s. (For a detailed description of study method and design, see Appendix A.) Most of the children studied were ages five to eight years. Some children were fortunate to receive treatment from highly trained medical specialists, who in exceptional cases addressed the child's emotional, social, and medical needs in the program of treatment. More typically, a child's care was not oriented toward treating the "whole child" and was not entirely state-of-the-art even in its medical regimen, particularly for asthma. For example, many young study participants with asthma did not recognize and had never used a peak-flow meter, a gauge of breathing function that was largely standard issue in elite medical institutions in the mid-1990s.9 I did not focus on judging the value of medical treatment; my purpose was to open a window into the felt human experience of symptoms, suffering, and treatment encountered by a crosssection of young children, understood from their own vantage point. My goal was to witness the lived experience of illness within the lifeworld of children. I sought to bring to the fore children's perceptions, feelings, and understandings as they lived with chronic illness. I also listened to their parental caretakers, for illness takes hold in families, as well.
The child-centered approach shed light on both the positive and negative sides of the chronic illness among youngsters. Children's worlds included not only significant felt suffering, but also creative, resilient ways of rising above the hardship and stress, often through imaginative means. The children showed that burdens are often counterbalanced by the power of narrative and fantasy. This book attempts to address both the depths and heights of children's experiences, both the magnitude of their dilemma and their resourceful "imaginal coping."
In Chapters 2 and 3, the experience of diabetes and asthma are presented to provide a context for understanding children's illness experiences. The context for each illness necessarily touches on sociocultural issues as well as concerns of the family and individual. Children's overall propensity to cope through imagination, as well as their coping through humor and ritual, is the topic of Chapter 4. Chapter 5 will raise some final themes, including the issue of how imaginal coping taps into a lifeline of cultural symbols, using them for healing.
To attain medical care to their liking, a significant portion of American adults have come to embrace (and in some cultural traditions have long practiced) non-allopathic, alternative forms of treatment for illness.10 One basis for the alternative health care movement has been a desire for health care to have a broader framework of meaning, extending to psychological and social dimensions as well as the physical body.11 Ritual and symbolic behaviors such as visualization or prayer are features that accompany the practices of alternative healing. The alternative medicine movement views the patient as having wrongly been treated as "childlike" in conventional biomedicine rather than receiving the respect due adults as partners in the medical process.
This study of very young patients demonstrates that the literally childlike have much to teach about the value of symbolism and ritual, as well as the value of respecting the patient's full humanity. Lacking any organized social movement (albeit summer camp qualifies as a shared social experience), children addressed issues of emotion and meaning through their personal resources of imagination and trust. Children's own voices, about their own illness experience, contain an enlightening measure of insight- perhaps insight that can tip the unbalanced scales of childhood chronic illness. Adults need only to bravely and respectfully listen.