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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Summary:

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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Summary:

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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Summary:

Munch has many works dealing with the illness (tuberculosis) and death of his dear sister, Sophie. In this painting she is seated in the wicker chair with her back to us. The aura of sanctity is in no way diminished by the medicine bottles, bedpan and paraphernalia of the sickroom. The bed is empty and in the background. The artist directs our focus not to the dying person but to the inner thoughts and grief of the family members, the soon-to-be survivors.

Munch's father (a physician) and aunt Karen (who brought up the children after Munch's mother died when he was five years old) are close by Sophie. Munch and his sisters are in the foreground. His brother Andreas is alone to the left (perhaps wanting to leave--the lithograph version shows the door slightly ajar).

Munch was fourteen when his sister died. Members of the family (who can be identified in so many of his pictures, e.g. "Death Agony," "The Dead Child") are painted not at the ages they were when the event happened, but closer to the ages they were when Munch painted the picture. Munch would not dispute that illness and death laid the foundation for his art. He himself said, "In the same chair as I painted the sick one I and all my dear ones from my mother on have been sitting winter after winter longing for the sun--until death took them away--I and all my dear ones from my father on have paced up and down the floor in anxiety." (Bente Torjusen, Words and Images of Edvard Munch {Chelsea Green Publ. Co., Chelsea, Vt., 1986)

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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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Summary:

Mind, Body, Spirit consists of three pictures. The artwork representative of "Mind" shows a woman in a wheelchair wearing a red beret, bright yellow smock, and holding a paintbrush in one hand and a palette in the other. The frame around the seated woman is composed of ovals of one color enclosed in squares of the opposite hue. The woman looks directly at the viewer and sits squarely in the center of her chair and the image. Although enclosed by a thick border, the woman’s feet, and the brushes in her right hand and mouth break out past her boundary.

The depiction of "Body" maintains the same layout template. Here, however, the woman seated in a wheelchair is wearing yellow flippers, a yellow bathing cap on top of which sit goggles, and a red swim outfit. On her lap is a floatation device - a swimming tube - that the woman covers with her folded arms. Four colors comprise the background: blue, green, aquamarine, and purple; these are grouped into shapes evocative of waves in water. As in "Body," the seated figure, although enclosed by thick borders, trespasses beyond; in this picture, her flipper-encased feet challenge the confines of her space.

"Spirit" makes use again of the same template. Here, the background is given perspective and is representational of grass and sky. The blue-green colors are restrained and soothing. The woman meditates in a wheelchair, and is visually balanced with symmetrical positioning of hands, arms, and feet. Her hair is fully visible and uncapped by a headpiece. In contrast to the other two images, her eyes are closed. She is flanked by a blue and green border, beyond which her hands and feet extend.

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Summary:

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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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 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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