Summary:

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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The border of this short poem refers to the boundary separating the narrator both from those who are well, and from her own self before she became ill with a painful chronic disease. She is an "exile" who must tell stories about what life was like in another country (good health) in a perhaps idealized past.

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This short documentary film was made by Angelo Volandes while he was a fourth year medical student at Yale, as part of his senior thesis. It describes the life of Ray, a 70 year old dermatology patient who has suffered from neurofibromatosis since he was a teenager. Severely disfigured by this condition, Ray has led a life of social ostracism, loneliness, physical discomfort, and stoic depression.

Angelo introduces the film, frankly describing his own "visceral reaction" when he first encountered Ray in clinic. Ray and his long-time physician, Dr. Braverman, alternately discuss how Ray’s condition has affected every aspect of his life. Although Ray has endured more than 30 operations to remove the tumors that become infected, itch, and plague him, it is social ostracism that has most powerfully altered his life.

The camera follows Ray as he shops in the supermarket while doctor and patient describe what an ordeal this can be. Worse than suffering the stares of fellow shoppers is being treated like a contagious carrier of the plague by the checkout clerk, who refused to handle Ray’s money. Ray tells how incidents like these have landed him in the Emergency Room numerous times, out of sheer emotional upset.

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These arresting and beautiful drawings of a woman's body through which the interior skeleton is visible represent the art and body of Laura Ferguson, a visual artist who has severe scoliosis. At age 13 Ferguson underwent spinal fusion surgery, followed by one year spent wearing a plaster cast. Years later she began to experience pain and disability due to her condition. This was the impetus to try to understand her body, to visualize its skeleton, to undertake "an artistic inquiry" into the medical condition of scoliosis.

She learned anatomy and the physiology of motion, learned to read her own x-rays and was helped to visualize her skeleton by orthopedists and radiologists, working most recently with radiologists at New York University School of Medicine who provided a 3D spiral CT scan. In Ferguson's words, the latter is "an exciting new technology that allows me to view my skeleton from any angle, rotating and tilting it to match whatever movement or pose I'm interested in drawing." (Perspectives in Biology and Medicine, Spring 2004, vol. 47, no. 2, p. 166)

Ferguson originated her own technique of "floating colors" to produce the layered background (on paper) of these drawings. On top of the complex colored background that constitutes the body's flesh in her work, she uses drawing materials to represent the interior skeleton, allowing the viewer to see both the body and its skeletal interior--but the interior has been exteriorized. Ferguson depicts a body in motion--bending, kneeling, reclining, stretching, twisting--as well as a sensual body--nude, with breasts and long hair; embracing, being embraced. Some of the depictions do not have a skeletal interior at all while some are almost straight anatomical drawings of skeleton parts.

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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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A woman, Frida Kahlo, looms in the foreground, central to the painting, facing the viewer fully frontal.  She is nude, except for a sheet that is wrapped around her foreshortened lower body, and the widely spaced straps of an upper-body corset.  The center of her upper body is vertically torn open from neck to pubic region to reveal an Ionic column that is split horizontally in numerous places.  The column pushes up against the figure's chin.  The expression on the woman's face is serious, stoic.  Tears trickle from her eyes and carpenter nails penetrate the skin of her face and the rest of her exposed body, as well as the sheet.  Her long dark hair hangs loosely behind her head, her left ear exposed. Behind the woman stretches a fractured greenish-brown earth, reaching to a strip of sea, which meets the dark blue sky.

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This anthology culls 1,500 excerpts from approximately 600 works of literature primarily written in the past two centuries and representing all major genres--the novel, drama, poetry, and essay. These brief selections highlight how literature portrays the medical profession and also provide ample evidence of many recurrent themes about the doctor-patient relationship and the personal lives of physicians present in the pages of fiction.

The book is organized into eleven chapters devoted to the following subjects: the doctor's fee, time, bedside manner, the medical history and physical examination, communication and truth, treatment, detachment, resentment of the medical profession, hospital rounds, social status, and the doctor in court. Many well-known authors including Anton P. Chekhov, Sir Arthur Conan Doyle, Ernest Hemingway, Thomas Mann, W. (William) Somerset Maugham, Leo Tolstoy, Tennessee Williams, and William Carlos Williams are featured in this anthology but less notable writers are also introduced. A twenty-three-page bibliography of primary and secondary sources is a useful element of the book.

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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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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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