NWSA Journal 14.3 (2002) 220-221
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Travels with the Wolf: A Story of Chronic Illness by Melissa Goldstein. Columbus: Ohio State University Press, 2000, 274 pp., $65.00 hardcover.
What most impresses me about people living with chronic illness is simply their ability to go on, to get up every morning, and face the day not knowing what gifts and challenges of their illness lie ahead. Their struggle to overcome pain and fatigue, disability and disappointment remind me of Sisyphus, for just as they have met some new challenge, they are faced with another and must patiently turn, and again push the rock up the mountain. That they can do so with grace, good humor, resilience, and creative gifts to impart to the world bespeaks the true message of Melissa Goldstein's Travels with the Wolf: A Story of Chronic Illness.
The wolf referred to in the title is the Latin wolf, lupus, and this memoir is an account of Goldstein's encounters with the ever-changing, sometimes mild, often ferocious lupus with which she lives, beginning with the disease's first appearance during college, to the increasing toll the lupus takes on her body today, as it involves her central nervous system. Her blow-by-blow account effectively draws us into the world of chronic illness, for one frequently feels her exhaustion. Goldstein gives us a good understanding of the often-misunderstood autoimmune disease lupus. She details the particular complications surrounding its clear diagnosis and the related effects on appropriate treatment, and on an ability to make sense of what is happening to one's body. She also gives a clear picture of the health care system and the problems of having to rely on teams of specialists who see only their piece of the puzzle, which is the whole of the illness to the person involved; the dependency on the competence and caring of physicians, which she often found in short supply; and the whims of health insurance providers. She chronicles the tremendous drain of illness on one's mental and spiritual reserves, friends, families, and finances. But she also relates the love and the light that have sustained her—and the poetry. Goldstein's account is punctuated by her poetry, which has often been a valuable medium of communication between herself and her caregivers. Her poetry gives us unique insights into the effects of the disease on her mind, body, and spirit.
Goldstein often uses the word hysterical to relay the doctors' depictions of her, and in this regard, I would have appreciated a deeper examination of the long association of hysteria (hyster = womb) with women. I would like to know more about how the term has allowed for the discounting of women's illnesses as nonexistent or madness, as women with "vague and mysterious diseases" grasp for sanity in an attempt to find validation. But the strength of the book lies elsewhere. [End Page 220]
What makes Goldstein's account stand apart for me is that she gives us the perspective of a young person (she was nineteen when she first developed the disease, and 27 when she wrote this book) facing the future with chronic illness. While Goldstein's work does not have the larger context and life perspective of a more mature writer, she provides a very needed glimpse into living with illness at a time when most of one's peers are bursting with youth, good health, and a seemingly limitless future. Illness makes "fitting in" difficult. Craving normalcy, Goldstein instead found herself living the life she had associated with the elderly, walkers and canes, wheelchairs, memory lapses. Contact with friends, who often had little experience with illness, was awkward. The sense of shame surrounding illness in our culture is exacerbated in youth, and there is a tendency among the young to hide their disease, a very significant aspect of illness in young people that needs understanding. Also, it is quite different to be confronted with chronic illness when one has already journeyed through much of life and quite another when...