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)


This is a candid, insightful book about well-meaning but hypocritical and dangerously consequential societal attitudes towards grief, privacy, abortion, suicide, euthanasia, capitol punishment. Repudiating the medical and mechanical models of disability which view the disabled as "sick and in need of a cure" or "broken requir[ing] repair," Mairs makes a case for society's "dis-abling us . . . with plenty of ramps, Braille, interpreters, and other modifications we would live just as easily in the world as anyone else." (p. 145).

Her sensitivity about the importance of human touch--"I long to the point of pain to scoop up my little grandsons, cuddle them, rock them, play pat-a-cake" (p. 146 )--extends from her personal inexpressible sadness to the cruelty of tactile deprivation for the institutionalized, compassion for prisoners, even for murderers on death row who have committed heinous deeds. "Oh, I suppose the guards may shove them from time to time, which is better than nothing, and of course they will be handled as they're strapped to a gurney and the injection site is prepared; but they will never again be touched tenderly by another human being. Nobody will kiss them goodbye." (p. 165)

The agonizing decision to take her adult son Ron off life support is accompanied by an account of the ICU attending physician's appalling insensitivity and arrogance "trailing a medical student whom he did not introduce . . . a lesson in the very worst way to approach a family who has asked that treatment be terminated." (pp. 185-185)



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