The Book of Jesse · Excerpt




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.
            Everything is wrong with this fantasy, spun in 1999 of a time in 1995 when Jesse was fighting for his life a hundred miles away. It couldn’t be summer, and him with his backpack slung over his right shoulder. School was out by then. It could be mid-spring, early May, he kept going that long not to sit at home waiting for Friday the fifth when we would take him to the hospital to wait for a liver transplant. But the sun wouldn’t shine this high overhead in mid-spring and he wouldn’t be walking home at noon anyway unless he was ill or this was a half day, and then Gail would pick him up or he’d 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. Now it’s guilt time, 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.
            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’s 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. He 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 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, then he goes into the main house through her kitchen, his bedroom before we built the addition after Vicki’s 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 and sees him, 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. 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.

********

I long for solitude, but I wander. Upstairs, his brother’s bedroom. Everyone got to choose a shirt and a drawing. Daniel claimed the Skydiver. Jesse drew him backwards with colored markers on the inner side of a sheet of plastic laid over a heavy paper mat on which he drew a landscape in crayon. The skydiver is a young man. His suit is military brown. Green straps across his shoulders hold an orange parachute bag on his back. There are no pull strings for the parachute. His right arm is stretched out and down, his left arm is bent. Both hands are clenched. His right leg is stretched out behind him with a purple shoe pointing forward, and his left leg is bent forward. Short black action lines above his left hand and right leg. Behind him, a pale turquoise sky. Below, an unfamiliar rocky terrain too close for parachuting or too far away. The goggle straps of his red aviator’s cap fly upward but to the rear, showing a downward maneuver, planned, or a free fall, unplanned. Black dots for eyes, cartoon eyebrows, and mouth wide open give him a look intent, surprised, inscrutable.
            People come up to look at him, and everyone sees something different.
            He’s flying, the first man to fly on his own.
            He’s shouting for joy. To himself or his audience.
            He’s falling. His parachute won’t open. He didn’t check for pull strings before jumping.
            No, he’s holding a pair of invisible pull strings.
            No, he’s turning the steering wheel of an invisible ship.
            He’s not flying or falling, it’s not about that. He sees something outside the picture frame. The drawing is about what’s not in it.
            He lifts them up one moment and drops them the next and they walk away. But I drift, out the window, rise fifty feet above the ground, drift south on Route 8 then southwest along the Merritt Parkway to the Saw Mill the Hutchinson and the Henry Hudson Parkway. Down to my right on the sheet metal surface of the Hudson River, the last held images of the day tremble in its last light and sink from view. Clouds of trees of Central Park divide the West Side of Manhattan from the East Side. I make my descent, right leg leading left leg bent, and brake to a slow-motion landing on the sidewalk. I walk through the revolving doors that talk, past the guards and up the stairs to the main pavilion with its mighty glass rafters overhead. I walk diagonally to the left through another set of revolving glass doors to the escalator down to the basement. I turn right at the vending machines and follow the yellow striped corridor to the elevators and up. The neonatal lounge sits empty in its alcove. I turn left then right and walk down the hall to the double metal doors and onto the pediatric intensive care unit.
            At the other end of the unit I see Terri, Jesse’s nurse this 7 a.m. to 7 p.m. shift, grab the hand of a device, the Scale‑Tronix 2001 to its makers, the Tuna Scale to the nurses, and pull it out from its cubbyhole next to the linen cart. It is evening, mid-May, and it is time to weigh Jesse.
            Terri wheels in the Tuna Scale. An upright metal stand with a digital monitor rises from the back of a three sided steel frame open in front like a forklift on rollers to fit under the bed. Attached at the top perpendicular to the metal stand is an aluminum rod that runs parallel to the floor. Attached perpendicular to the rod is a six foot aluminum crossbar. Two curved metal arms hang at either end of the crossbar, each ending in a steel claw. She pulls out a six by three foot green plastic sling rolled up and leaning against a claw. Metal bars are hemmed into the long sides of the sling. She lays the sling on the bed to Jesse’s left. We take positions, three parents and one nurse, two on each side of the bed. The other parent takes a turn at getting in the way. We roll Jesse onto his right side, push the sling snug against his back, and partially unroll it behind him. We roll him over the hump of the sling onto his left side and hold him steady. We unroll the rest of the sling behind him and roll him onto his back. We hook the claws into metal rings at the four corners of the sling and check him for balance. Terri turns the crank on the metal stand, Jesse clears the bed, and we check again for balance. Once when we hoisted him he tipped back and I feared he’d fall head first off the end of the sling before we could grab him. Terri cranks and stops when the sling is a foot above the bed. We steady it and release. She pushes the monitor and calls out a weight for one of us to remember. She lowers the sling onto the bed, we roll Jesse in reverse to retrieve the sling, and she rolls the Tuna Scale out of the room.

*******

The little Orthodox Jewish girl across the hall has died. They wrap her in a white sheet from head to toe. The rabbi leads the procession down the hall to bury her before the next sundown. I go into Room B, behind the nurse’s station. Jesse is awake. He motions for me to come over.
            Will you take me home? he mouths.
            Yes, I’ll take you home.
            And I still want to lift him up and take him home although he’s long since gone up in flames. I will come back into Room B a few days later in August and remove the extension tube they added to his tracheotomy after his last surgery, that stuck up eight inches in the air. It will make it easier to suction him, Dr. Kostos said, but it made it almost impossible. Anyone who’d ever sucked on a straw could tell at a glance it was good for nothing but a flagstaff for a skull and crossbones. I will pull out the tube slowly, and pull out the inner cannula from his windpipe, and put a bandage over the hole in his throat. I will remove all his IV lines one by one, those in his arms, in his neck, in his legs. I will put lotion on his wounds and cover them with bandages. I will draw the catheter from his penis and cover him up. He had little enough privacy here, poked and cut and probed with needle and scalpel and tube, surrounded by love and vain prayers. I will remove from his finger the red light that frightened and oppressed him. Then I will turn off the respirator that bubbled night and day and we will sit here for a moment alone in the blessed silence. And then let all his mothers come in and stand around his bed wearing black veils and black dresses and wailing softly. Or let them grieve in their own ways if their grief is filled with time so he can see his ancestors standing behind them and we don’t have to believe that all this was nothing more than a surgical accident. And then I will lift him up and carry him out of his room. Going down the hall he will shed the heaviness of disease as the bile and blood tinged water that engorged him falls in our wake. We will take the elevator down to the basement and wind our way through the not clean intestines of the hospital to the escalator and up. His open gut wound will close and his true face will emerge from his bloated Sumo wrestler mask, and his crooked smile. He is so light now I must hold on to keep him from floating up to the mighty glass rafters of the pavilion. We come to a flight of steps and go down past the guards. We come to the revolving glass doors that talk, that beckoned us to enter then but turn slickly now on their hinges. We pause at the threshold and walk out and I have to close my eyes, like him, in the sun’s stone oven shattering light.

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