Summary:

The author, a scholar of autobiography and other forms of life writing, has expanded his scholarship to include what he calls "autopathography"--autobiographical narratives of illness and disability. This book is the result of an extensive study of such narratives. The works discussed are full-length and recently published--most were published in the 1980s and 1990s. Couser is particularly interested in issues of narrative authority, in how autopathography can be counterdiscursive to the prevailing biomedical narrative, and, especially, in how autopathography is counterdiscursive to the cultural stigmatization and marginalization that often accompany illness or disability ["insofar as autobiography is the literary expression of the self-determined life" (182)].

Since social/cultural counterdiscourse is of particular importance to Couser, he has focused on four specific illnesses/disabilities that have been associated with stigma: breast cancer, AIDS, paralysis, and deafness (182). His analysis of each condition is diachronic because he is searching for "the enrichment of the genre by successive writers who defy, complicate, or refine its conventions" (44). In addition, Couser asks, to what extent do authors "integrate illness narrative into a larger life narrative?" (14). He considers who narrates illness stories (biographer or autobiographer), how the stories are constructed, whether and how they achieve a "comic plot" and narrative closure.

The book's introduction (chapter 1, "Human Conditions--Illness, Disability, and Life Writing") provides a framework, relating what will follow to current issues in life writing, "identity politics," the culture of medicine, and illness experience, as well as to other work on illness narratives such as Anne Hunsaker Hawkins's Reconstructing Illness: Studies in Pathography and Arthur Frank's The Wounded Storyteller (annotated in this database).

Chapter 2, "Medical Discourse and Subjectivity," develops further the questions of narrative authority, representation, and resistance to a dominant medical or cultural narrative. Each subsequent section--breast cancer, AIDS, paralysis, deafness--is prefaced by an informative discussion of the cultural and narrative issues that are relevant to the particular condition; the subsequent analyses of individual texts further elaborate these themes.

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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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This volume of new and selected poems was compiled during the last year of Jane Kenyon's life, while she was suffering from leukemia. It includes generous selections from her four published volumes of poetry, as well as 20 previously uncollected new poems. The book ends with an Afterword written by Kenyon's husband, poet Donald Hall, and the last poem she wrote, The Sick Wife (see annotation).

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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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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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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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Summary:

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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Summary:

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:

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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