Literature, Arts, and Medicine Database

Rowe, Michael
The Book of Jesse: A Story of Youth, Illness, and Medicine.

This is the story of a child/young adult who had the misfortune of multiple health problems from the age of three until his death at 19. But even more than Jesse's story, this is the narrative of and by Jesse's father as he recalls the emotional rollercoaster accompanying the abbreviated span of his oldest son's life. The author kept detailed journals of his and his son's experiences with the health care professions, while also collecting the boy's artwork which appears to be Jesse's personal record of his own internal struggle.

Although not chronologically linear, the narrative allows the reader into the soul of the parents' agony, from the time of Jesse's initial diagnosis of hydrocephalus, through management of inflammatory bowel disease, and into the final chronicle of unsuccessful liver transplantations.

It is painful to read this heart-wrenching story of love, frustration, anger, and ultimately some level of resolution of the grief that surrounds the illness and death of one's child. This work is of particular importance to heath care providers because of the clarity with which the author describes the behaviors and events related to the medical management that disturbed him, Jesse's mother and stepmother, and Jesse himself. Within the work lie some clues as to how patients and their loved ones are affected by what healthcare workers say and do, as well as what they fail to say and do.