Diagnosed in 1972 when she was a twenty-nine-year-old wife, mother, and writer, Nancy Mairs faced a mysterious, incurable, degenerative neurological disease. Over the years, she became more and more physically limited, until in 1992 she became wheelchair- bound.
In her earlier nonfiction books—Plaintext: Deciphering a Woman’s Life (1986), Remembering the Bone House: An Erotics of Place and Space (1989), Carnal Acts (1990), Ordinary Time: Cycles of Marriage, Faith, and Renewal (1993), and Voice Lessons: On Becoming a (Woman) Writer (1994), all of which are partially autobiographical—Mairs includes some reflections on her crippling illness. Waist High in the World: A Life Among the Nondisabled is her first attempt to capture for the reader the entirety of her private and public life with multiple sclerosis (MS).
Mairs introduces the reader to her wheelchair-bound world not in a way that will make the nondisabled reader feel good but rather in a way that will awaken this reader to the reality of Mairs’s world. Her tone does not reflect self-pity or nostalgia; rather, it is marked by realism—tough realism, tempered by humor. As readers of Mairs’s earlier books know, she is absolutely honest, always.
Mairs’s purposes are several. First, she wants to reach out to others suspecting or knowing that they have MS or a similar severe disability, to assure them that “a life commonly held to be insufferable can be full and funny.” Second, she wants to bring the experience of being a disabled person to nondisabled readers, to make these readers see Mairs as she is. She wants the disabled also to see themselves as she sees them: in ways that are mostly negative, not from deliberate ill will but from a sort of blindness to the reality of the human being who is disabled. Finally, as more and more disabled persons are living longer lives, Mairs argues that the world can be adjusted in ways that will enable them to live, if not totally full lives, at least lives as full as possible. For this to happen, though, there must be changes in human attitudes and societal space.
What Mairs refuses to do is replicate those media stories that give their audience a romantic picture of life with MS. This book will not make the nondisabled reader feel good, nor will it convince the world that the disabled are able to overcome all of their problems, or at least get along with a cheerful attitude. At the same time, Mairs never asks for, indeed mocks at, attitudes of either pity or admiration for the disabled. For these reasons, she predicts that her book will not make the best-seller list, and she is right. Yet because of its unflinching realism, this book is a significant contribution to the literature about human beings with disabilities.
Mairs’s purposes are served by her structure, which is topical rather than chronological. She writes first about her private life and second about her life in the public sphere.
The first half of Mairs’s text, “Home Truths,” is just that: a description of coping with basic life functions in the home, day by day, with an ill and deformed physical body. She has no privacy, though she loves solitude, because she cannot dress, eat, bathe, or go to the bathroom without someone’s assistance. She cannot cook or do laundry or clean. She is dependent. What is this like?
Mairs points out her good fortune in having her husband, George, as a loving caretaker who gives her the comfort of a relationship so close that he knows her needs almost instinctively. Also, Mairs tell the reader, their physical intimacy continues—without intercourse, but very satisfying. Nevertheless, Mairs fears for the time when George can no longer help, because either his melanoma cancer returns or he simply ages. She fears living her last days without someone to give her the care she must receive daily, without George’s willingness to help her live a full life. She fears being exiled to a nursing home. At the same time, Mairs feels guilt for the strain she puts on her family members because her need for care keeps increasing; she feels guilt for her inability to offer them ordinary kindnesses, such as visiting or helping out when a need arises.
As she writes about her full range of emotions, not only guilt and fear but also anger, frustration, embarrassment, envy, and anxiety, Mairs does not allow herself any self-pity. Rather, she has learned to practice her brand of courage: adapting herself to each progressive lessening of independence, but doing so as a person in control of, rather than controlled by, MS. She has done what she could for herself as long as possible but has also let go when necessity demanded, in every case—from her earliest losses, such as becoming unable to take long walks, to her...
(The entire section is 1964 words.)