Spring, 2005
Deborah Shai
(New Haven Press, 1993)
Review by Anna B. Reisman, MD
Yale University School of Medicine, New Haven, CT and VA Connecticut Healthcare System, West Haven, CT
Caring for a severely disabled family member, whether physically or mentally compromised, can be, as the cliché goes, a fulltime job. One’s identity as spouse, child or parent may be subsumed by the role of caregiver. Thorny but inevitable questions—ethical and practical—arise: How to meet the daily challenges and stresses and manage the guilt provoked by fantasies of alternatives—nursing homes, institutions or even death? Not least, is there any hope of tapping into the unspoken wishes and motives of the severely disabled?
Deborah Shai’s 112-page novella “Fools-bus,” in American Spectacles and Other Cultivated Illusions, portrays one caregiver’s experience in confronting these questions. The story takes place over a day in the life of Arthur Cormorant, a divorced literature professor, who lives with his fifteen year old mentally retarded son Mark, and Mark’s younger sister. Cormorant awakens during the night, looks in on Mark and is overcome with a desire to kill him, followed, just as suddenly, by a surge of love. Unable to bear these conflicting feelings, he descends to his basement printing press to rewrite his reality. But “Cormorant barely reads the words he’s written”:
“It’s the print that counts… The words and spaces on the page [are a] design that creates order and tempers a painful reality… with a press you can create something that never existed. Or annihilate something that did.”
Cormorant is awakened a second time by a strange laugh that grows louder and louder. Then the stench hits him. Mark has rubbed excrement everywhere, in his ears, on his face, in his pubic hair and, to Cormorant’s horror, he is eating it.
Cormorant copes by detaching himself from the scene, mechanically cleaning his son and the room. There is no acknowledgment of the accident, no kiss, no calming words, just scrubbing. Later, in a metaphorical scrubbing, he again goes “underground, to breathe ink, to revise what happened” into a story about a boy who can only whistle and because the sound of the whistle is pure, he is saved by God. But this time, the “beautiful story” fails to transform reality. Cormorant realizes that he’s turned to his press “to keep himself sane” in the face of caring for Mark. Any true liberation depends on his son’s death.
A telephone call from Mark’s school principal the next morning brings news of a seizure. Mark is in the hospital. Cormorant is convinced “with a leaden relief” that this is the end. Blinking back tears of joy, he produces two versions of Mark’s tombstone and selects the seemingly more acceptable one: “Only Son, /the yearning of my heart/to the end of my days.” He discards the one that is truthful:
“Gift of injured love, love’s injured gift, I couldn’t return you/And I couldn’t discard you/The ache, /the shame, /the anger, /the guilt, /the love/I feel for you/will burden me/forever.”
In Chekhov’s story “Heartache,” the driver of a horse drawn carriage searches futilely for a listener with whom to share his dreadful tale of the sudden death of his son. Ultimately, he settles for his horse. In a similar compulsion toward catharsis, Cormorant recounts the story of the excrement to a parade of people—among them, a bartender, Cormorant’s office mate, a blind man in a drugstore, a girl blaring loud music in her car. The reactions range from anger to disbelief to indifference to laughter.
At the hospital, Cormorant wanders into a medical museum, where the curator shows off a series of deformed fetuses floating in glass jars. Most of these “monsters” were strangled or smothered at birth, the old man tells him, adding, “If you’d had a little boy like that, wouldn’t you do it?” Cormorant, who just hours before wished for the death
of his own “deformed” son, is sickened by the thought. It dawns on him that people who look or act different are still human beings.
Later, Cormorant observes Mark newly bathed in a white hospital gown and senses “a current of intimacy” between Mark and his nurse that locks him out. For the first time, he sees his son as a male with sexual desires. Cormorant views Mark not as a creature whose behavior he can artificially revise into some form he can endure, but as separate and human.
A hospital social worker furthers Cormorant’s evolution. Through her, he sees that Mark is not, as he puts it to her, “a barely human idiot,” but someone trying to say something, even through a repellent act. It hits Cormorant that Mark’s strange habits, utterances and outbursts are an effort to communicate, and later, in a lovely moment of insight, he sees the world from Mark’s perspective:
“Puzzled by this world of little boxes, boxes on wheels and fixed boxes…the changing chorus of voices…the voices in the home box, big lady voice that went away, nice voice, old man voice, always there voice, scratchy and deep, often kind, sometimes angry (but don’t know why)…”
It seems unimaginably difficult for a caregiver to step outside of the mundane “meaningless things”—the dressing, eating, toileting and cleaning that sum up one’s relationship with a severely disabled person—and to conceive of that person as something other than that which only needs, takes and consumes. If we, like Cormorant, can learn to recognize the humanness of those we care for, we will have taken an enormous stride toward both easing our burden and improving their lives.
in collaboration with
Dartmouth-Hitchcock Medical Center
The opinions expressed in the journal, Lahey Clinic Medical Ethics,
belong to the individual contributors and do not represent the institutional position
of Lahey Clinic on any subject matters discussed.
