The Book of Jesse: A Story of Youth, Illness, and Medicine
The Book of Jesse tells the story of a young man’s illness and confrontation with death as seen through the eyes of the father. It also tells a story of parents and children, of doctors and patients, and of high-technology medicine. The book weaves together the significant events of Jesse’s life as it moves back and forth in time between his hospitalization for a liver transplant, his earlier life, and the author’s present-day experience of grief. Jesse’s drawings, appearing at the head of each chapter, serve as part of a dialogue between father and son and of both with the reader.
Written in direct and vivid prose, The Book of Jesse pulls us in by creating a sense of immediacy and intimacy with the characters’ lives. It draws on thoroughly researched and meticulously observed medical facts and events, describe in lay language. Michael Rowe does not flinch at discussing medical miscalculations and mistakes, yet he avoids sensationalism. Or exposé in h is rounded portrayal of life an intensive care unit, including the marvelous skills, generosity, and human failings of Jesse’s physicians and nurses. His quest to salvage meaning from disaster than an exploration of Jesse’s life and death stands at the center of the book. Rowe’s investigation into the possibility of malpractice mirrors that larger investigation. People will read The Book of Jesse because it tells a gripping s tory well, straight from the heart, the gut, and the mind.
[At home]
Looking toward Chestnut Street, not in this near dusk light a few days shy of the vernal equinox but at noon in summer’s full tide, I see him coming this way, backpack slung over his right shoulder and an enormous Bugs Bunny T-shirt hanging loose over his hips to disguise the outline of his ostomy bag. He has walked almost a mile, even with the short cut behind school up three flights of steps dug into the hillside.
A fantasy, and gets the facts all wrong. School was out by then, and Jesse spent the summer fighting for his life in New York City a hundred miles away. Still, instinct tells me to go with this image of him, walking down Quinn Street from Chestnut. On the morning of this day, years ago, Jesse is not taking the minivan home from school, no, he is not yet so fatigued from the effects of slowly advancing cirrhosis. Still, Gail and I both at work, Vicki, his grandmother, long gone now, has offered to pick him up, unless it’s a Friday and she’s having her hair washed and set or visiting a friend in Southbury. This is not a Friday, though, and she has made the offer.
get a ride home in the school minivan. Still, instinct tells me to go with this image of him walking down Quinn Street from Chestnut, and the associations that go with it.
On the morning of this day, Jesse is not taking the minivan, no, he is not yet so fatigued from the effects of slowly advancing cirrhosis that he cannot walk home from school. Still, his grandmother has offered to pick him up, Gail and I both at work, unless this is a Friday and she’s having her hair washed and set or visiting a friend in Southbury. It is not a Friday, though, and she has made the offer.
No, that’s all right, he says, I like to walk home.
What he likes to do is stop at Marty’s Corner at Chestnut and Quinn for the candy we warned him not to eat so much of when he still had a large intestine. Then, we hoped cutting down on junk food would save him an operation. We felt guilty afterward, as though we were telling him in advance that removal of his colon and placement of a plastic bag on his side would be just punishment for his love of sweets.
So, he has stuffed candy wrappers in his pockets. We’ll find them when we do the wash. He is devious but not a professional or he’d lose them in the trash. If he has been reading a paperback science fiction novel, he has put it away. He’s tired but doesn’t stop to rest. He turns at the driveway, not looking toward the front porch where I stand, and walks up the steps to the back deck. No one is home in our part of the house. He pretends to look in his backpack for his key to the glass doors to the kitchen, which he has lost again. If it were raining and Gail’s mother weren’t here, he’d walk to the far end of the deck and sit under the umbrella at the metal table dripping rainwater onto the planks. But he’s in luck—the sun is shining and Vicki, his grandmother, is home in the in-law apartment that runs along the deck at a right angle to our kitchen. From the easy chair in her bedroom she has watched him wave his hand over his backpack. She lets him in, scolding him for not knocking at her door. He turns a half smile away from her. This is a ritual they both enjoy. They talk for a minute and then he goes into the main house through her kitchen, his bedroom before we built the addition after her husband died.
Later, he comes back to visit. It’s a story I love to hear and she always tells it the same way. Jesse knocks. She calls out to him from the chair by her bed, sees him, reflected in the large etched mirror over the living room couch, check his hair in a small mirror at the passageway to her living room, then sees him check it again in the large mirror on the way to her bedroom. They talk about mundane things. If she asks, he goes to get a drawing he’s working on. Typical teenager, she says of his grooming routine. It’s my favorite part of the story.
*******
[At the hospital]
I go into Room D and go up to Jesse. He lies on his back inert, waterlogged, critically ill. And all because of a tiny hole in his intestine, a nick in his bowel the surgeons couldn’t see cutting through scar tissue from old surgery. Four days later they scooped two liters of watery feces out of his abdominal cavity. Sepsis, severe infection, set in. Sepsis, an exotic word then as if a new and terrible enemy had been set loose when we gambled on the giving and taking of the body’s organs.
Within days his body was falling like dominoes. His antibodies attacked the bacteria that caused and carried the infection but poked tiny holes in his blood vessels and capillaries too. The blood cells, big, stayed put but water and protein and electrolytes leaked into his tissues, his abdomen, into his lungs his hands and his feet. Fluid in his belly pushed up and crowded his lungs. His lungs pushed up on his heart. Fluid and blood seeped inside his lungs. The doctors, worried that his left lung might collapse or hemorrhage and that lead to pneumonia, cut a hole in his side and pushed a rubber tube through his ribs. Bloody fluid rushed out and down the tube along the side of the bed to a thin aquarium divided into vertical cells of equal size on the floor. We watched the clear cells turn red one by one in columns before our eyes. Dr. Atella the gastrointestinal fellow took us into the conference room to show us the X-rays. Before was white from fluid, after was pitch black. Jesse had been breathing on a quarter of one lung, she said.
A respirator wheezes nonstop by the windows pushing oxygen into his lungs through a breathing tube in his mouth. Several times during her shift, Terri suctions blood and fluid from his lungs, making a vacuum with her thumb on a piece of plastic tube from the respirator, snaking it down the breathing tube, pulling up blood clots in stops and starts with her thumb, probing as deep as she can without damaging his lungs or stirring up blood and bacteria. The clots will smother him if she doesn’t and are breeding grounds for bacteria. But suctioning is a balancing act, she says, because pulling up old clots causes fresh bleeding, like picking a scab on your arm instead of waiting for it to fall off. We had to leave the room the first time we saw him gag and fight against the suctioning. Now we stand by his bed watching numbers on the oxygen monitor drift down, rooting for a thick dark clot to be sucked through the curve in the tube on a successful probe and send his numbers climbing back up into safe territory.
He has IV lines wherever they can find places to put them—for antibiotics, for pain meds, for the giving of blood and blood products, and for dialysis a big line to a vein in his groin. Meds and blood hang from poles at the corners of his bed. Medical residents and lab technicians stick him several times a day to measure antibiotics and immunosuppressants in his blood and to measure his hemoglobin hematocrit and red blood cells. A red light clipped to his index finger is attached to the oxygen monitor. Electrodes on his chest send signals to a monitor above the oximeter for heart rate and blood pressure.
I squeeze his hand and wonder if I feel the hint of a squeeze in return. We tape up pictures of him around the room and next to the liver chart on his door where the doctors gather on their rounds, to show them who Jesse is, and remind ourselves. Dr. Lanier, the Chief of Gastroenterology, came in, was it earlier today, and waved his hand around the bed.
Never add anything, never give anything, never treat anything unless you have to. The more lines and poles and machines you see, the sicker the patient is.
But their standards are dropping to accommodate hope. Or Dr. Dorand’s, his attending surgeon’s, are. If Jesse is in pain his new liver, damaged by sepsis, must be metabolizing the pain meds and thus working a little bit. If he’s running a fever, his body can mount one. Common sense which we can’t afford would tell us that when everything is bad but some of that is good, things are bad indeed. We have heard the message only the stricken can hear in the Negro spiritual, dry bones of the grave coming together at the resurrection, shinbone connected to the knee bone connected to the thighbone connected to the hipbone. The word of the Lord, the singer whispers beneath the jubilation of the choir, is the miracle of the body, its million parts giving breath to each other from moment to moment with impossible luck until the miracle of illness turns each part against itself and every part against the other and takes your breath away.
And we have shut our ears to the singer.
The Book of Jesse is, in a word, a triumph. Exquisitely wrought by the father, the book is a compelling chronicle of his son’s illness and death. Jesse, by virtue of his illness, is the hero but it is the author’s pain and love that are unutterably poignant. The effect of such a calamity upon a family is told with candor. The dark underside of underside of medical technology is revealed with no holds barred. I have never read a more moving story of grief and bereavement. It deserves the widest readership.
- Richard Selzer, surgeon and author of Letters to a Young Doctor
Jesse does not survive, so his father’s last service is to witness the story Jesse cannot tell. In offering up his grief with only the least hint of acceptance and resolution—presented as a concluding tale spun from one of Jesse’s drawings—Rowe shows exactly what day after day of invasive treatment does to the souls of those who survive. Rowe is continuing to work as an advocate in pediatric clinical care, but concluding this book with recommendations for how to improve the system in which Jesse died would be like Sophocles ending Oedipus Rex with proposals for mandatory pre-nuptial family histories. The challenge of The Book of Jesse is how long we—as professionals, as parents, and as those who do sit with this book—who see themselves in its descriptions—may return to their work affected by what they have witnessed.
- Arthur Frank, author of The Wounded Storyteller: Body, Illness, and Ethics
In recounting and recreating he complex process of decision making [in medicine], Rowe provides an extraordinarily valuable example of the realities of communication that are often dangerously oversimplified . . . There is no “doctor-patient” relationship—there are multiple mutually interactive relationships among many professionals and family members. There is no “informed consent.” There is, instead, a process of trying to weight many opinions, desires, facts, and convictions against the impulse to flee. In offering his honesty, his insights his anger, and his own suffering to us. Rowe offers a rare gift.
- John Lantos, author of The Lazarus Case: Life and Death Issues in Neonatal Intensive Care