Summary:

The French writer Alphonse Daudet (1840-1897) developed the form of tertiary syphilis called tabes dorsalis in the early 1880’s. Tabes progressively destroys the structures of the dorsal column of the spinal cord, leading at first to lower extremity ataxia and neuropathic pain, and eventually to paralysis of the legs associated with intractable pain. Daudet sought treatment from the leading neurologists of his time, including J. M. Charcot and C. E. Brown-Séquard, but the disease progressed relentlessly.

At some point Daudet began making notes for a book about his illness. He spoke to several of his contemporaries about this project, but the book never became more than a collection of brief notes, which were collected and published posthumously as "La Doulou" (Provencal for "pain"). This short book, translated here by Julian Barnes, consists of "fifty or so pages of notes on his symptoms and sufferings, his fears and reflections, and on the strange social life of patients at shower-bath and spa." (p. xiii)

The notes are generally in chronological order, beginning with short comments like "Torture walking back from the baths via the Champs-Elysées" (p. 4) and "Also from that time onwards pins and needles in the feet, burning feelings, hypersensitivity." (p. 6) In a long section toward the end Daudet comments on his experience at Lamalou, a thermal spa that he visited annually from 1885 to 1893. "I’ve passed the stage where illness brings any advantage or helps you understand things; also the stage where it sours your life, puts a harshness in your voice, makes every cogwheel shriek." (p. 65)

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Summary:

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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In this novel, with the help of some friends, Gregor Samsa has survived his seeming death at the end of Kafka’s The Metamorphosis and joined a freak show in Vienna. A little man named Amadeus Hoffnung, who suffers from Werner’s syndrome (premature aging), runs this Chamber of Wonders. The human sized cockroach proves to be a big hit with the public and a good friend for his assorted colleagues, who come to admire his optimism, compassion, and sense of social responsibility. Gregor thrives, except for the festering wound in his carapace (back) that will not heal--the wound made when his father threw an apple at him during his traumatic early life in "Metamorphosis" as a human-turned-insect.

In 1923, as a result of an life-changing encounter with Ludwig Wittgenstein, and in the context of growing anti-Semitism in Central Europe, Gregor flies (literally) to New York, where he takes up residence and soon runs into Mr. Charles Ives, the composer and insurance executive, who gives him a job as an actuary. The novel describes Gregor’s subsequent adventures over the next 20 years--as a surprise witness at the Scopes trial, as the subject of Ives’s famous "Insect" Piano Sonata, and finally as the confidant of Franklin Delano Roosevelt and member of his "brain trust." Along the way, Gregor contributes greatly to the science of risk analysis and management.

In 1943, at the president’s request, Gregor joins the atomic bomb project in Los Alamos, New Mexico, where he serves as risk analyst and all-around moral questioner during the bomb’s development. Finally, Gregor Samsa, having survived 30 years as an insect, becomes physically ill as the old apple-infection turns to septicemia; and he becomes existentially ill, as he confronts the implications of nuclear warfare. He decides to commit suicide by placing himself among the instruments at Ground Zero of Trinity site, vaporizing in the explosion of the first atomic bomb; indeed, "Gregor’s was the most expensive assisted suicide in history." (p. 458)

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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 seated naked figure, back to viewer, embraces another facing forward, her hands covering her eyes and face. To the left of the couple, clearly "attached," is a third, amorphous, dark menacing, shadowy entity literally touching the pair. The empty space to the right of the figures is filled only with a wallpaper pattern, suggesting, on a cursory glance, that the painter was more interested in composition than content.

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Aerobics of the Spirit is a collaborative permanent online exhibition of art by Mary Anne Bartley and poetry by Emanuel E. Garcia, M.D., featuring twenty-nine images and five poems that reflect on sickness. The actual art represented on line consists of acrylic polymer emulsion color canvases and originated at Villanova University, where Bartley is Artist-in-Residence.

The first display (the homepage) includes an Artist's Statement outlining the two artists' tenets that art has a great medical value in the healing process, and that the utilization of one's inner creativity is a powerful treatment in stress reduction. Bartley suffered as a young girl from acute rheumatic heart disease and later became a pioneer in the field of Art in Medicine. Dr. Garcia is a psychoanalyst and psychiatrist who specializes in the treatment of creative and performing artists.

The first display (image 1) also includes artwork, "Lamentations"-- three sliced off faces in profile on a background of mottled blue-green-yellow-brown. Underneath the faces are outstretched arms with reaching fingers, seeking small heart shaped objects that float nearby.

The third and fourth displays (images 2 through 8, plus un-numbered kite drawings), "A Flotilla of Healing Kites," is meant to evoke feelings including freedom of spirit and place, deliverance from ailment, and childhood wonder. Bartley and Garcia include a song by psychotherapist Bruce Lackie, PhD, recognizing "the importance of the arts in healing the spirit." Reminiscent of Jackson Pollack's work, Bartley's kites possess a vibrant energy that, in contrast to what many would find macabre subject matter--sickness and death--elicits hope and joy from the viewer. Other works exhibited later in the online exhibition are non-representational images, often portraits, which make use of color and unconventional painting techniques to convey similar emotions.

The fifth and sixth displays (images 9 through 12), "Collaboration of Poet and Artist," is a joint project begun at The College of Physicians of Philadelphia, Section on Medicine and the Arts. Here, Garcia and Bartley dialogue with one another's work in a "Responsorial Psalm." This section includes the text of two poems by Garcia and a reading by him of one of them.

The seventh and eighth displays (images 13 through 24), "Portraits of Our Self and Others: Intimate Conversations We Have with Our Self," focuses on the power of facial depiction in bringing "new meaning to the past," and to "help rescue [an artist] from the depth of mourning." Included are the text and a reading by Garcia of his poem, "Portraiture."

The ninth display, "Vers la Flamme," pairs a three-part poem ("The Consultation," "The Stay," "The Cure") with three paintings-- the kite shaped drawing, "Behind the Dancer's Mask," and images 25 and 26.

The tenth display (image 27), "Homage to Wilma Bulkin Siegel, MD", pays pictorial tribute to Dr. Siegel, a "pioneer in the hospice movement"

The eleventh and twelfth displays (image 28), "Homage to Healers: John Y. Templeton, III, MD," features a painting of surgeons' hands covering an abstract human heart and a corresponding poem and reading. Mary Anne Bartley explains in text following the image Dr. Templeton's role in saving her life during her teenage years, and again "salute[s] this gentle healer:" "I carry the fingerprints of this great man in my own heart."

Dr. Garcia's poem, "Homage," expounds on Bartley's pictorial sentiment with words: "Darkened to nil . . . / to surrender to a surgeon's tryst, / Hands on my heart to cut and to caress / Deeper than any lover any lover ever would." The display also includes photographs of Bartley as a young patient in 1967 at the time of her surgery, of Dr. Templeton, and of all three--Garcia, Bartley, and Templeton--at an exhibition.

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To Kiss the Spirits: Now, This Is What It Is Really Like is in oil on canvas with a painted frame. The work's center is filled with a column of light that stretches like a holy tornado from the top of the frame to the bottom. Within the luminescence exists a spiral staircase up which silhouetted ladies ascend. As the women move from the bottom of the stairs to the top, their colors change from purple to pink to white. The ladies who have reached the top of the stairs gain wings and fly into the starry night.

The bottom of the painting is lined with small, plain houses, some of which are lit interiorly. The sky is filled with stars, which appear in greater numbers the farther their distance from the ground.

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Summary:

An overhead ceiling lamp partially illuminates a dreary room, which is colored in glum blues and black. In the center of the print and within the cone of light that extends downwards from the ceiling lamp are two items. One is a square picture on the wall of a gown with lace that appears to be made of barbed wire. The other is a rectangular object on the floor that may either be a bed or a coffin. On top of the rectangular object lies an indistinguishable shape, perhaps clothing. Strewn on the floor of the room is some sort of debris.

The other objects in the room are a dresser with an open drawer and an open box that rests on top of the dresser. The room is sealed; the two windows are boarded up and the door is locked shut with a plank of wood. Writing along the bottom of the picture gives the piece its title: "Hoping to Bring Her Life Together...It’s Not Hard, It Just Takes Time."

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A woman's profile occupies the foreground of this computer-generated image. She is depicted from the base of her neck up to near the top of her head. A blue device protrudes from her neck, and a small section of a ridged tube, presumably connected to the blue device, occupies the bottom right-hand corner of the image. The device is a tracheal breathing tube, shown in the online photograph of the artist that accompanies the image. Worsham suffers from amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig's disease.

The lady in the artwork wears a polka dot blouse and a vibrantly patterned hat. Her eyes look directly forward, as though oblivious to the onlookers in the image's background, and her mouth hangs agape. She wears lipstick, eye shadow, and rouge.

A young boy's face with big eyes, rosy cheeks, and brown hair looks impudently at the woman from the lower right half of the image; his mouth holds a slightly upturned grin. Behind the boy and occupying the background stands a woman whose green eyes stare at the disabled lady's profile. The staring lady has long light brown hair and she wears lipstick, makeup, a purple kerchief, and a green dress. Partially separating the boy and the woman from the disabled lady is a thin band of blue background - presumably sky - that cuts down through the center, albeit the background, of the image.

A dull green border of blocks frames the scene. Each corner is decorated with a red heart, the points of which angle into the center of the image. Big block letters inscribe the artwork's title: the top of the frame reads "HEAD," the bottom reads "TURNER."

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In the foreground, staring directly at the viewer, white tears visible on her cheeks, the artist lies immobile in a four poster hospital bed, only her head visible above the white sheet covering that is decorated with pale, pastel circles of cells or microscopic organisms.  The towering wooden oak easel that held her canvases, allowing Frida to paint when ill, is now the structure supporting a funnel of physical and emotional preoccupations erupting as vomit from her mouth: fish heads, dead chicken carcasses and fowl entrails, and skull inscribed with her name.  The background is a barren, parched and cracked desert.  The solitary objects in the sky, a moon and red-orange rimmed sun, suggest being trapped eternally, day and night, in this state, "Without Hope" --the painting's title. On the back of the painting Kahlo wrote, "Not the least hope remains to me....Everything moves in tune with what the belly contains."  [Hayden Herrera. Frida Kahlo: The Paintings (New York: HarperPerennial) 2002, p. 187]

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