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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The country doctor, Monsieur Benassis, practices in a village called Voreppe at the base of the Grande Chartreuse Mountains. He is a seedy and unkempt, but very kind-hearted, bachelor of 50 who lives with his authoritarian housekeeper. Benassis was brought up in the country, but had lived for many years in Paris where he enjoyed a dissipated life and loved two women. He left the first, only to learn later that she bore him a son and died of heart disease. Later his illegitimate son died.

His second love, Evelina, broke off their engagement when her parents objected to the suitor’s sordid past. Benassis became very depressed and considered suicide. After visiting a monastery in the Grand Chartreuse region, he decided to move to Voreppe and devote his life to serving the poor rural people. He not only practices medicine, but over the years has also initiated a number of economic and community development projects in the area.

Above the village is a hamlet that contains a dozen cretins among the thirty families who live there. Cretinism is common in the region. Dr. Benassis decides that it would be good for the public health to have all the cretins sent to an asylum in Aiguebelle, some distance away. When Benassis becomes mayor, he arranges to have the cretins transported to Aiguebelle, despite opposition from the local people. One cretin remains "to be fed and cared for as the adopted child of the commune."

Benassis later moves the other inhabitants of the hamlet to a new, more fertile, site in the valley and installs an irrigation system for them. At the end of the novel, Benassis has a stroke and dies. He is the first to be buried in the new cemetery.

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After five unproductive meandering sessions, Mr. Trexler, the patient, turns the tables on his psychiatrist, batting back to him the question he has just been pitched: "What do you want?" The doctor's pathetically shallow and concise answer, "I want a wing on the small house I own in Westport. I want more money and leisure to do the things I want to do"(101), propel Mr. Trexler towards compassion for the doctor, and a feeling that he himself had regained his own quirky hold on the world.

After leaving the "poor, scared, overworked" doctor, Trexler thought again about what he wanted: "'I want the second tree from the corner, just as it stands,' he said, answering an imaginary question from an imaginary physician. And he felt a slow pride in realizing that what he wanted none could bestow, and that what he had none could take away. He felt content to be sick, unembarrassed at being afraid; and in the jungle of his fear he glimpsed (as he had so often glimpsed them before)the flashy tail feathers of the bird courage"(102-3).

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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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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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Robin Carr, a Torontonian in her mid-twenties, has serious inflammatory bowel disease, which by the end of the book has lead to twelve abdominal operations. The story begins as she anticipates further surgery to close her ostomy and create a pelvic pouch. Failure of the surgical procedure seems to bring about failure of her marriage. She is reminded of her father's own experience with an ostomy and his death of bowel cancer, as she establishes new relationships and grapples with her mortality and the possibility that she may never be able to have children.

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In 1917, the poet Siegfried Sassoon protests the war in a London newspaper. He is saved from court martial by a military friend who argues successfully for his transfer to the Craiglockhart War Hospital where he comes under the care of psychiatrist, William Rivers. Sassoon is not sick, but he and his doctor both know that the line between sanity and insanity is blurred, especially for a homosexual and in a time of war.

The other patients, however, are gravely wounded in spirit if not body; sometimes they are tormented by uncomprehending parents and wives. Rivers’ efforts to unravel their nightmares, revulsions, mutism, stammering, paralysis, and anorexia begin to shake his own psychic strength and lead him to doubt the rationality--if not the possibility--of restoring them to service. He yearns for his pre-war research in nerve regeneration, the quixotic enterprise that serves as a metaphor for his clinical work.

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Shay, a psychiatrist who specializes in post-traumatic stress disorder (PTSD), juxtaposes the narrated memories of his patients who are Vietnam veterans to the story of Achilles in Homer's Iliad. He finds that the roots of their illness, like that of the ancient hero, lie in betrayal of duty by senior officers who failed to do "what's right," in the repression of grief, and in the social limitations imposed on expressions of love between men.

These stressors lead to guilt, wrongful substitution, and dangerous rage, called the "berserk" state. The mental pathology is fostered by an equally wrongful failure to honor the enemy; return to "normal" is never possible. The book concludes medically with recommendations for prevention.

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A son’s story of his father’s illness, treatment, and resultant destruction by the "psychic-driving" experiments of Dr. Ewen Cameron at Montreal’s Allan Memorial Institute in the 1950’s. The effect of the father’s illness on the family is recounted, as is the son’s gradual realization, only when he is himself about to become a psychiatrist, that something abnormal must have taken place during those long hospitalizations. Weinstein tells other patient stories in some detail as he recounts the legal fight for compensation awarded finally in October, 1988.

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