Summary:

In this superbly written essay, Nancy Mairs, a feminist writer who has multiple sclerosis, defines the terms in which she will interact with the world. She will name herself--a cripple--and not be named by others. She will choose a word that represents her reality, and if it makes people "wince," "[p]erhaps I want them to wince. I want them to see me as a tough customer, one to whom the fates/gods/viruses have not been kind, but who can face the brutal truth of her existence squarely. As a cripple, I swagger" (9). She muses on the euphemisms that are used by others, concluding that they describe no one because "[s]ociety is no readier to accept crippledness than to accept death, war, sex, sweat, or wrinkles."

Mairs describes the uncertainty of a (correct) diagnosis early on, the kind of person she was before, and how that has changed and not changed since her illness. She discusses her need for assistance, but balances that by saying that there are many people around her willing to help; she describes her dependence on her family and how lucky she was to have a husband and children before she was taken ill. Nevertheless, there "always is the terror that people are kind to me only because I'm a cripple" (15).

Mairs has many astute comments to make about how disability does not fit well in our youth-oriented, physical-fitness-obsessed culture, and on how social expectations influence whether she adapts or fails to adapt. She also understands what is at stake for the medical professionals who care for her: "I may be frustrated, maddened, depressed by the incurability of my disease, but I am not diminished by it, and they are" (20).

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Summary:

This book's title is from a Goethe poem, "The Holy Longing," translated from German in its entirety by Robert Bly: "And so long as you haven't experienced / this: to die and so to grow, / you are only a troubled guest / on the dark earth." Ten intensely personal essays tell of the suffering and everyday presence of pain of a severely disabled writer who has advancing multiple sclerosis, and of how, "in a very real sense, and entirely without design, death has become [her] life's work." (p. 13)

Beginning with her father's sudden death when she was a child, the essays describe her aging mother's expected death and the family's decision to take her off life support; her caretaker husband's diagnosis of metastatic cancer with uncertain prognosis; her own attempted suicide; death of friends, pets, including her beloved dog; and a young pen-pal executed on death row. If that weren't enough, a coda, her foster son's murder and again the decision to remove life-support, provides "[t]he end. For now." (p. 191)

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