Summary:

Vicki Forman's twins, Evan and Ellie, were born in 2000 at twenty-three weeks' gestation.  Fetuses could legally be aborted up to twenty-four weeks, but rules regulating treatment of extremely premature babies differed from one hospital to another.  Daughter of a doctor, Forman knew how slim were the chances of survival and how great the chances of serious disability if either of the twins did survive.  Grieving, but realistic, she and her husband asked for a DNR order, but learned that such orders did not strictly apply to the situation of children like their twins.  Instead, the line between  the parents' authority and the doctors' remained blurry and decision-making vexed not only by technical and emotional complications, but by conflicting legal guidelines as they made their way through many months of hospitalization and home treatment of their surviving son.

Ellie, the daughter, died at four days.  Evan lived for eight years with disabilities that completely reorganized family life, and required constant monitoring, management of equipment, and careful orchestration of parental relationship to their older child, Josie, and their special-needs child.  Much of the narrative covers the period of hospitalization during Evan's early months and the negotiations between parents, physicians, and other caregivers.  It also touches on Forman's own emotional responses to the strenuous learning curve required of a parent who suddenly finds herself with a special-needs child.

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First published in 1915, this is the story of Gregor Samsa, a young traveling salesman who lives with and financially supports his parents and younger sister. One morning he wakes up to discover that during the night he has been transformed into a "monstrous vermin" or insect. At first he is preoccupied with practical, everyday concerns: How to get out of bed and walk with his numerous legs? Can he still make it to the office on time?

Soon his abilities, tastes, and interests begin to change. No one can understand his insect-speech. He likes to scurry under the furniture and eat rotten scraps of food. Gregor's family, horrified that Gregor has become an enormous insect, keep him in his bedroom and refuse to interact with him. Only his sister Grete demonstrates concern by bringing his food each day.

When Gregor breaks out one day and scurries into the living room, his father throws apples to chase him away. One becomes embedded in his back. Eventually the apple becomes rotten and infected; Gregor wastes away. When he dies the cleaning woman throws his remains into the garbage.

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The narrator is confined to her bedroom in a summer house as part of the rest cure for her "nervousness." A nursemaid takes care of the baby. Her husband John is a physician who insists that she remain completely inactive, not even picking up a pen to write.

The bedroom was formerly a nursery. It has ugly yellow wallpaper with a recurring pattern that begins to obsess the narrator. Given her loneliness and lack of emotional support, she begins to see a woman confined in the pattern of the "repellent, almost revolting" wallpaper. Eventually she decompensates and has a complete emotional breakdown.

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Oswald Alving has returned home to visit his mother on one of the occasional visits he has made since leaving home as a young boy. He was sent away to prevent him from becoming morally contaminated by his father, Captain Alving, who subsequently died of syphilis. This time, however, he intends to stay and marry the maid, Regine; he is unaware that Regine is his half-sister, sired by the profligate Captain Alving.

Parson Manders, the mother's former lover, also visits and reprimands Mrs. Alving for not living a more conventional life and rearing her son. In the play's climax, Oswald reveals that he, too, is suffering from syphilis and will inevitably develop dementia. To make up for the past and to prove her love, Oswald asks his mother to give him a fatal dose of morphine when signs of dementia appear. At the end of the play it is not clear what she will do.

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This poem is written from the point of view of a caregiver, one with seemingly endless patience, who steps in to piece together her loved one after the "doctors gave up." Indeed, after Humpty has fallen again, we find him at the speaker’s door "begging / in that leaky voice / and I start wiping the smear / from his broken face."

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The author introduces his book by saying, "I should like to write a book to help people cope with inexplicable pain and suffering." He is "profoundly suspicious" of the genre of books that attempt to explain why a good and all-powerful God allows us "to undergo suffering for seemingly no reason." Thus, he distinguishes his investigation from theodicy in the traditional sense (an explanation of why God allows suffering); rather, Hauerwas wishes to explore why human beings believe it is so important for us to ask why God allows suffering.

The narrative backbone of this book is provided by fictional and non-fictional texts about the suffering and death of children. The prime fictional example is The Blood of the Lamb, Peter De Vries's 1961 novel about an 11-year old girl who dies of leukemia and the anguish of her father. This fiction, however, was based on De Vries's personal experience. [See annotation in this database.] Hauerwas also explores several non-fictional accounts of dying children, especially Where Is God When a Child Suffers? by Penny Giesbrecht, The Private World of Dying Children by Myra Bluebond-Langner, and Lament for a Son by Nicholas Wolterstorff.

Traditionally, suffering and death were interpreted in the context of religious meaning (e.g. part of God's plan, punishment for sin, etc.) Yet, the fact that God allows evil--in the form of suffering--to occur poses a problem, if God is both all compassionate and all-powerful. Modern medicine dispenses with the meaning of illness--disease and suffering are pointless and should be eliminated, if possible. Likewise, in modern society our preferred death is sudden like a bolt of lightning (no suffering), while in the past people looked for a "good death," which might involved a period of suffering during which the person could become reconciled to family, friends, and God.

Nonetheless, even if we adopt a scientific point of view, as human beings we can't help attributing narrative meaning to our illnesses. Thus, when adults suffer, we place their suffering in the context of a life story that may include a number of layers and dimensions. We "dilute" the suffering in the context of story. However, childhood suffering and death appear to truncate narratives, sometimes even to abolish them. Therefore, the suffering seems particularly meaningless, and it feels more "evil" and more devastating.

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Dr. Thomas Graboys is an eminent Boston cardiologist who developed Parkinson's disease in his late 50s. Shortly after his wife died in 1998, Graboys noticed unusual fatigue and mental sluggishness. He attributed these symptoms to grief, but they continued and he later experienced episodes of stumbling, falling, and syncope. During 2003 Graboys confided to his diary that it was "increasingly difficult to express concepts." ( p. 30) He also noticed tremor, problems with dictation, and frequent loss of his train of thought, symptoms "typical of Parkinson's." (p. 24)

While Graboys recorded these concerns in his diary, outwardly he denied that anything was wrong, even to family and close friends.  In fact, his denial continued until the day in 2003 when a neurologist friend accosted him in the parking lot and pointedly asked, "Tom, who is taking care of your Parkinson's?" (p. 27) Dr. Graboys faced an even more difficult challenge in 2004 when he developed the vivid, violent dreams and memory lapses that led to a diagnosis of Lewy body dementia, a form of progressive dementia sometimes associated with Parkinson's disease. With the cat out of the bag at last, the author finally began to confront the issue of professional impairment. In mid-2005 Graboys's colleagues seized the initiative and told him that "it was the unanimous opinion of my colleagues that I was no longer fit to practice medicine." (p. 36)

Writing now with the assistance of journalist Peter Zheutlin, Graboys reviews these events with unblinking honesty. He confronts his anger and denial, but also reveals the thoughtful, generous and passionate side of his character. "What will become of me?' This is the question that now lies at the center of Dr. Graboys' personal world. He knows that his loss of mental and physical control will worsen. With almost superhuman effort and his family's strong support, the author has been able to adapt to his limitations and maintain a sense of meaning in his life. Will that continue? In a chapter entitled "End Game," he addresses the question of suicide. Reflecting on his condition, especially the dementia, Graboys asks, "Will I lose myself, my very essence, to this disease?" (p. 161)

In the last chapter, Graboys acknowledges that he has no "simple prescription that will help you or someone you love live a life beyond illness, or tell you how to tap the hope that lives within." (p. 181)  However, he then goes on to make several suggestions of the advice-manual variety: "Use your family and friends as motivation to live life with as much grace as you can muster." "Find a safe place... to unburden yourself of anger." "Acceptance is key to defusing anger, stress, and self-pity."  "Use your faith in God, if you believe in God."  (pp. 181-182)

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The twin of the title is Helmer van Wonderen. He is a 54 year old dairy farmer in Noord-Holland, the northwest peninsula of the Netherlands and the year is 2002, 35 years after his only sibling, his twin brother Henk, died. Henk was the front seat passenger of a car driven by Henk's fiancée, Riet, when the car plunged into lake Ijssel. Riet lived; Henk drowned. Helmer's life immediately changed from that of a 19 year old university student in Dutch linguistics to a farmer and successor to their father, a tyrannical and distinctly unlovable man. Henk had been the father's clear favorite, if we accept Helmer's and the narrator's viewpoints. Helmer stays a bachelor and maintains the farm into the present, the time of the novel. His father is elderly and confined to the upstairs. Helmer treats him with disdain; he feeds and bathes him with barely disguised contempt awaiting his death with a vague sense of hope, symbolized by Helmer's re-organizing and painting the interior of their house at the beginning of the book.

Abruptly Riet, a recently widowed mother of three, re-enters the van Wonderen world with a letter requesting Helmer to allow her youngest child, an 18 year old son, also named Henk, to live with Helmer as a farmhand. Riet wants her son Henk to learn farming and discipline and receive the parental (read "fatherly") direction she feels he needs and she cannot supply. Helmer consents. Henk comes to live with him, working desultorily as a hired hand.

Riet and Helmer become estranged over the latter's lying to her that his father was dead when in fact he was upstairs at the time of her only visit to their home since her fiancé's death. One day Henk saves Helmer's life when the latter becomes pinned by a sheep in a ditch. Henk leaves soon thereafter; the father dies; and a Frisian farmhand from Helmer's youth re-appears at the time of the father's funeral. He and Helmer take off, after Helmer sells the farm, to Denmark, a much vaunted Shangri-La for Dutch farmers in this novel.

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A thirty-five year old English professor (and brilliant writer) diagnosed with ALS (Amyotrophic lateral sclerosis, Lou Gehrig’s disease) is told he has less than five years to live. Nine years later he publishes a series of 12 personal essays that chronicle his remarkable journey from diagnosis ("Getting Up in the Morning") to being mindful, "cultivating the eternal present" ("Living at the Edge"). He shares with us the interim of conundrums, spirituality, and the quotidian by reflecting on his New Hampshire life: Unfinished Houses, Wild Things, Mud Season, Winter Mind.

In almost every essay Simmons reflects on the rewards of "mystical seeing". We all have "within us this capacity for wonder, this ability to break the bonds of ordinary awareness and sense that though our lives are fleeting and transitory, we are part of something larger, eternal and unchanging." (p. 152) "Most of us have found that a line of poetry or scripture, a passage of music, the turning of a leaf in sunlight, or the sight of a child splashing in a stream can suddenly become a doorway through which, as William James writes, ’the mystery of fact, the wildness and the pang of life, steals into our hearts and thrills them.’" (p. 101)

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Barney Panofsky--like so many of Richler’s protagonists (and like Richler himself, one suspects)--is a hard-drinking, hard-smoking, foul-mouthed, hedonistic writer and producer. He has many sexual exploits in his past and loads of self doubt in his present, together with digitalis and dentures.

But there was only one true love in his life, although he has had three wives: Clara a mysterious artist-poetess whose suicide in Paris helped to establish his fame; "the second Mrs. Panofsky" whom he loathed for all of their short time together; and Miriam, mother of his three children and his partner for decades, until Barney blows it with presumptuous inattention culminating in a vain indiscretion, and she leaves.

Since the end of his second marriage, Barney has lived under the shadow of the unproven accusation of having murdered his best friend, Bernard "Boogie" Moscovitch. Supposedly, he committed the crime in a drunken rage provoked by his discovery of Boogie in flagrante with "the second Mrs Panofsky." Barney may have been drunk, but he didn’t do it. At least, he doesn’t remember doing it.

Barney’s "version" is an autobiographical account written in old age, and annotated with footnotes by his priggish and obsessive son. It is Barney’s side of the murder and his life, and it leads up to and devolves from that fateful evening when, far from being angry, he felt joy in a bedroom scene that would be his ticket to live with Miriam.

He recalls drinking with Boogie and their going for a swim. But he alone still expects to see Boogie stride through the door. Everyone else, including his children, believe that he was the killer, spared imprisonment because Boogie’s body was never found. The weight of Barney’s guilt waxes and wanes.

But remembering anything is increasingly difficult for Barney. He fears dementia. As its specter looms over his memories, it raises doubt about the veracity of his "version."

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