Summary:

This is a collection of stories from Dr. Remen’s own life and from her practice as a pediatrician and psychiatrist. She works with many cancer patients and others who are terminally ill as well as with the chronically ill. Her stories record patients and their families finding what is authentic and meaningful in their lives when they have been forced deeply into their own vulnerability. She also speaks from her lifelong struggle with Crohn’s disease.

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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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In short, episodic chapters that move unpredictably and unchronologically through the years between 1956 and 2003, Nick Flynn tells us about his father, Jonathan Flynn--a man of many trades, a writer, an alcoholic with a prison record, a homeless person--and of his own life, which sporadically interweaves with Jonathan's. When Nick was six months old, his 20-year-old mother left Nick's father and made a meager life for herself and her two young sons. A string of her live-in boyfriends and one more failed marriage wound their way through Nick's young life, which was in the seaside town of Scituate, Massachusetts, "the second most alcohol-consuming town . . . in the United States" (77).

At 12, Nick is drinking beer; at 17 he is drinking to get drunk, sometimes with his mother, and smoking marijuana (and later doing other drugs). For years Nick's father "had been manifest as an absence, a nonpresence, a name without a body" yet, "some part of me knew he would show up, that if I stood in one place long enough he would find me, like you're taught to do when you're lost. But they never taught us what to do if both of you are lost, and you both end up in the same place, waiting" (24).

The place where Nick and his father "end up" is the Pine Street homeless shelter in Boston where 27-year-old Nick is a caseworker and Jonathan Flynn appears, a few months after being evicted from his rooming house. Reluctantly, Nick gradually acknowledges his father's presence in the shelter, and gradually, during the next 15 years, reconstructs the lost years through conversations with his father and his father's acquaintances, letters, and manuscript excerpts. The title of the memoir is what Jonathan Flynn mutters at night, when he is looking for a place to sleep (205).

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The poet's daughter suffered from Guillain-Barré Syndrome and was in a rehab institute. The mother, who narrates the poem, observes several of the other children there, all of whom seem either abandoned by their parents or orphaned. Each stanza describes a different child with a different disability (and no family there for him or her).

The only mother who appears stays far away from her child. "When he goes home, Frankenstein with cane, his mother / clicks her high heels quickly away, as far ahead / of him as she can get."

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This story follows John and Aileen Crowley and their three children, the two youngest of whom have a rare "untreatable" genetic disease. Pompe disease gradually degenerates muscle until patients cannot breathe or sit up; it also dangerously enlarges the heart. Determined to try to save his children, John Crowley started up a biotech company to develop an enzyme that would replace the non-functioninging one in his children. Others researchers in other companies were trying different approaches. Everyone made mistakes and created problems along the way.

Finally, in "the mother of all experiments," the four promising drug developments were tested against each other in a double-blind trial. After five years of development, the "special medicine" was finally given to the Crowley children. Daughter Megan, a real fighter and outgoing personality, won over the hearts of the researchers. Interesting conflict of interest issues increase the tension in this race for a cure.

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This is an autobiographical novel in which the author relates the emotional life of a childhood and young manhood lived with cerebral palsy. The disease is never named (except on the fly-leaf of the book cover); its impact is revealed through incidents and personal relationships experienced by the protagonist in a narration which reflects by its style, the intellectual maturation from childhood to adulthood.

As a child, Felix spends long periods in a children’s home, to receive therapy and educational training, and to relieve his family of the strain of his care. Felix learns to walk with painstaking effort and surges of determination, but the reactions of others, even of his mother, make clear that he is not normal. His social life is complicated by anti-semitism and by just being from a different religious background. With puberty comes sexual longing and the need for female affection, and eventually the painful recognition that his desire will not be reciprocated. What saves Felix is the life of the mind and a love of literature and writing which a few influential mentors and a clever, similarly disabled friend help him to develop.

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In the sing-song voice of a Latin-American child, with the repetition and rhythm of a nursery rhyme, the poem tells of "my brother/who spins his eyes" and the child-narrator's awareness of the shame the parents feel about having a mentally retarded son. The poem superbly captures traits of mental retardation, and the sibling child's awareness of its impact on the family.

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Lucy Grealy, poet, tells the story of her childhood and young adulthood, a twenty year period of overwhelming physical and mental suffering. Yet the author is so resilient, so intelligent, so insightful, and such a good writer that her story transcends mere illness narrative. At age nine, first misdiagnosed and finally identified as having facial bone cancer (Ewing’s sarcoma), Lucy underwent several surgeries and more than two years of intensive chemotherapy and radiation treatments. Pain and nausea, anxiety and fear of more pain and nausea were only part of the ordeal.

The young Lucy became aware of what it is to be severely, chronically ill. Her sisters behaved differently toward her: they were polite. "Suddenly I understood the term visiting. I was in one place, they were in another, and they were only pausing." Even her father felt uncomfortable at her hospital bedside, and Lucy was relieved that he came infrequently.

But being at home was worse: in the hospital the other patients and the staff expected little from her and she felt no guilt or shame; amidst her family, she blamed herself for the tension, arguments over money, and her mother’s depression, even though these elements had existed prior to her illness. Her hair fell out and she became dimly aware that people were staring at her face. Nevertheless, "I . . . was naturally adept at protecting myself from the hurt of their insults and felt a vague superiority . . . . "

Well enough to return to school, Lucy’s disfigured face drew taunts from classmates; she understood finally that she was perceived as ugly and that she would not be loved. Only on Halloween, when she could mask her face, did she feel free and joyful, unconcerned about her appearance, "normal." Her moods now alternated between despair, determination, and escapism. She became convinced that only facial reconstruction and a restored appearance would make life bearable.

During years of reconstructive surgery Lucy evolved complex rationalizations to give meaning to her suffering. Two anchors had stabilized her existence throughout the misery: a passionate adolescent love of horses, and an adult love of poetry. Eventually outward appearance and inner life became harmonious. "The journey back to my face was a long one."

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Contrary to what the title might suggest, this is not a memoir of drug addiction. Writer and poet Tom Andrews has hemophilia, and codeine is the analgesic he requires during excruciatingly painful internal bleeding episodes. In this diary, begun while recovering from a leg injury, Andrews reflects on his particular experience of life and hemophilia. He makes clear that " . . . hemophilia is only one of the stories my life tells me . . . " (p. 29)

The memoir interweaves the author's physical, emotional, and existential journey through the convalescent period with flashbacks of childhood and his relationship with his ailing brother, now dead, to whose memory the book is dedicated. Brother John's fatal illness with kidney disease shaped--and continues to shape--Tom's life as much as did the hemophilia.

On the one hand their parents' concern for John took Tom out of the spotlight and allowed him to pursue his own interests. These extended to motorcycle racing, playing in a punk band, and setting a record for continuous hand clapping--at age 11--that was recorded in the Guinness Book of World Records. On the other hand, Tom's guilt over surviving John's early death may account for an almost reckless disregard of his own precarious physical condition. A constant subtext is the deep grief and abiding love of the living brother for the dead one.

But this is not a mournful book. It is an engaging memoir that provides unusual access and insight into the world of hemophilia, especially with regard to the painful "bleeds." It is the sense of exile and separation from others that is most disturbing for Andrews when in the throes of unrelieved pain. He takes us through the mental concentration required to endure this pain and the liberating relief to mind and spirit provided by codeine. Memory, perception, and writing provide the additional resources he needs to re-connect with the world.

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In 1977 Marion Cohen's physicist husband, Jeffrey, was diagnosed with multiple sclerosis. He was 36 years old. Cohen, a mathematician and poet and mother of four, became his chief caregiver. As her husband's illness progressed, the caregiving role became increasingly absorbing, demanding, all-encompassing. Eventually daytime attendants were hired but sometimes they didn't show up. This collection of 77 poems is a kind of journal, primarily from late 1989 through January, 1991, that chronicles Marion's ambivalent caregiving, despair, resignation, "temper tantrums," love, and compassion.

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