The War for Gloria
Page 35
As the summer ended, his restlessness did not abate.
The Friday before Labor Day, he went through the site until he found the female Bobcat operator working in an alley between two old North End houses, one of which was being taken down. When he found her, she was leaning over her controls, smoking a cigarette, wearing her hard hat, reflective vest and dusty leather gloves, surrounded by a rubble of bricks, which she’d been clearing. There was a vein in her bicep. He asked to speak with her. She turned her engine off to be polite.
Now there was no cover for their conversation, and they weren’t alone. A group of guys was watching—all guys in their twenties who knew where they belonged: right here, on the job. Everything he was about to say to her he had to say with them listening. And they all happened to be very big. Corey asked her out.
She told him graciously that she had a boyfriend.
“I get the feeling he’s here right now.”
“That’s him.” She pointed at one of the men behind her.
“I hope you don’t mind me asking. I meant no disrespect.”
“None taken.”
He walked away under the eyes of the other men—and under the half-built tower, which would soon be twenty stories high, overlooking Boston harbor. He shouldn’t have walked away from martial arts.
September had arrived, the elbow of the year. The weather was still warm; he didn’t see birds flying south, not yet; but the angle of the sun was different and the ocean was turning a darker cast of blue. Molly was going back to college. He had just decided to go back to Bestway when his mother’s disease progressed to her throat.
* * *
—
He wasn’t ready for his mother’s loss of speech. She sounded drunk. He thought it was the Robitussin. But she was drunk the next day and the next. She went from sounding tipsy to sounding slow and stupid all the time. Then suddenly she began to drool. It all just happened. “Mom,” he said. He wanted to say goodbye. They never had a last good conversation. The key moment just got by him.
She cried out, “I’m having trouble talking now.”
“I understand you fine. You sound great to me.”
“I tried to talk to the nurse and she couldn’t understand me on the phone!”
“What, Mom?”
“She couldn’t understand me on the phone!” The struggle to speak made her stiffen spastically in her wheelchair. Her body straightened like a board and she slid down. She stared at Corey with desperation.
“It’s okay, Mom,” he said. “I understand you.”
“What am I going to do?” Her teeth caught on her lip. She couldn’t control her mouth, couldn’t close it properly.
“We’ll work it out,” he said.
* * *
—
A Lucite board appeared, leaning against the living room wall. It had the alphabet printed all around it and a square hole cut in the middle, like a picture frame. Joan said Dawn had left it there. She showed him what it was for.
You held it up and looked through the picture frame at Gloria and said, “First letter: A, B, C…” Her eyes would pick the letter out. You’d say it aloud; she’d blink to confirm. Then you’d start around again, she’d pick another letter, and so on, until she spelled a word.
Insurance didn’t cover an iPad with a voice synthesizer. Dawn told Corey to contact medical technology firms to see if they would donate one to his mother. He made some calls but gave up.
She didn’t like the letter board and resisted it, preferring to talk—but all she could do was moan. Corey tried to develop a code with her. They never did. At a nurse’s advice, he asked his mother yes or no questions. But her yes sounded like her no. The only way he could tell them apart was by guessing from her tone of voice and body language, but when she was in distress, these subtle signals were hard to read. In moments of crisis, they couldn’t understand each other, which made the situation worse.
* * *
—
As her mouth and throat muscles went, she started losing the ability to chew and swallow. She started choking on her food. For reasons no one understands, even though her muscle mass is disappearing, the ALS patient needs more nutrition, not less. There’s the danger of a deadly spiral: getting too tired to eat, eating less, losing weight and strength, getting weaker and more tired. The harder it got for her to eat, the more they had to feed her.
He made pureed peas with salt and pepper and a chunk of butter. They added butter to everything she ate, for calories. He set it on his mother’s tray and put a dish towel on her chest and prepared to feed her. Slumping compressed her stomach. He tilted back her chair to free her abdomen from her body weight and help keep food in her mouth.
He fed her a spoonful of puree and she swallowed it. He fed her another and she began to choke and cough. Peas slipped out of her mouth.
“Water?”
She nodded. He gave her a sip. Water ran out of her mouth. He wiped her chin clean. She opened her eyes and nodded for another bite.
He gave it to her, and a cough erupted out of her, spraying peas from her mouth. Her legs kicked out rigid. Her throat was blocked. She wasn’t breathing.
He jumped up, ready to give her CPR, watching her color. Dawn had brought them a donation from a medical equipment manufacturer, a suction machine: a steel box that sat on the floor and plugged into the wall socket. When he switched it on, the motor began grinding like a compressor at his construction site. A clear hose ran from the housing to a plastic wand used to suction excess salivary secretions from Gloria’s throat.
“Suction?”
She squeezed her eyes in a way that might mean yes. He kicked the motor on and put the wand inside her cheek, vacuuming out the material she was eating. The machine spat it into a clear plastic receptacle attached to the housing, filling it with mucus and pureed peas. Her saliva snapped and rattled in the hose.
She started breathing. Corey emptied the receptacle in the kitchen sink, rinsed and reinstalled it.
* * *
—
Joan was unusually good at handling mealtimes. Maybe the secret was that she had been inoculated against stress by the chaos of her life—the recurrent breakups, job losses, evictions, periods of homelessness, legal dramas, traffic accidents, friends who OD’d or who went to jail, break-ins, robberies, feuds, workplace harassment, you name it—she’d had it all. She had a happy star-child way about her, where she would sit for hours cross-legged on a bed looking at the album covers of vinyl records, examining the symbolism of angels smoking cigarettes on Black Sabbath’s Heaven and Hell.
She could get carried away by a whimsical thought in the middle of a house that was falling down and let out what she was thinking in an unchecked stream—the monologue of a plucky, self-consoling street kid who’d spent her life without security but had a knack for creating it out of thin air—a what-if?/didja-ever-notice? kind of stargazing.
So she’d talk to Gloria while feeding her, laughing at her own ideas—almost having a two-part conversation, as if she were gossiping with herself, the emotional pitch rising and falling with expressions of outrage, streetwise realism, innocent wonder, X-rated sex talk, a burst of bathroom humor. She was an engine that would run of itself. But the beautiful thing was that this was not a one-way soliloquy after all. The two women were actually communicating, Corey saw; Joan was saying something and, with perfect natural grace, she was picking up on Gloria’s reaction by looking at her eyes.
She stayed loose and laughy, showing no annoyance at being interrupted when Gloria had trouble swallowing. She talked about sexual, biological things in all their grossness, telling a story about how once, when working in Methuen as a dishwasher, she’d been on her period and her white pants had gotten wet and her period had soaked through her pants all down the back of her legs, without her knowledge; and all her coworkers had known about it before she d
id.
While telling the story, she farted. “Oh, sorry,” she said without embarrassment. It did nothing to diminish her in Corey’s eyes. She had an untouchable charisma.
* * *
—
MassHealth started paying for a home health aide to assist them 30 hours a week. The other 138 hours Joan and Corey divided between themselves. They tried to have the health aide cover times when neither of them could be at home. In mid-September, the agency sent them a woman up from Brockton, next to where Corey had taken martial arts. She wore dark dresses like a Muslim or a Caribbean Christian, and her name was Hattie.
A week after Hattie started taking care of Gloria, Corey worked an overtime shift and Joan got home before him. His mother told Joan to take off her pajama bottoms, and Joan found bruises on her thin white legs above the knees.
How did this happen?
Hattie had given her a bath.
“I’m going to talk to her.”
Gloria looked at the letter board.
Joan fetched it and Gloria conveyed the following message: She did it on purpose. I asked her to stop. She knew what she was doing. I said, “I hope you’re enjoying yourself,” and she said, “Yes.”
By the time Corey got home, Joan had kicked Hattie out of the house and the incident was over, but it reinforced his picture of the world as a place with no rules except those that good people managed to enforce on their own.
He immediately told his super that from now on he’d have to leave work at a fixed time every day. His super, an Irish-Italian from Dorchester with a white skunk stripe in his dark gray hair, met Corey’s request with silence. He said construction “doesn’t work like that.”
Quite soon he showed what he meant. The next day started badly. Corey and two other laborers had to break up a concrete slab that had been incorrectly poured. To coordinate with other trades, it had to be removed as fast as possible. The men took turns jackhammering and using the chisel end to pry up chunks of rock. The pneumatic hammer weighed some eighty pounds. A demanding job at any time, to do it at a sprint was backbreaking. To make matters worse, Corey’s mother had had a bad night the night before and he hadn’t slept. He couldn’t maintain the pace of the others. The super shoved him out of the way and snatched the hammer. “My five-year-old kid could do it better than you!”
The day went on as it had begun in a state of perpetual crisis and pell-mell activity. By quitting time, it hadn’t abated; a trench had been cut to the wrong depth, and it was clear that the laborers would be getting overtime. They stood in their reflective vests, muddy sweatshirts, yellow hard hats, leaning on their shovels, waiting for the super to tell them what he needed. Mindful of his mother alone with another home health aide, Corey spoke up and said he had to leave. The super, who was bent over measuring the trench, yelled, “Shut the fuck up. You’re gonna stay here until I’m done with you.”
“No, I’m not,” Corey said, and walked off the job site.
Quitting his well-paid construction job couldn’t have come at a worse time. On top of everything else, his court case had just been resolved after nine months of continuances and he had to pay his father $400 in restitution for smashing his glasses.
Leonard had petitioned the judge for the specific figure of $1,257.32, which he had itemized in a matrix format: Sunglasses (1), Car Window (1), Cost, Tax, Time, Pain and Suffering. In a rather striking omission given this appetite for every penny, Leonard had said nothing to the court about his multiple law enforcement uniforms, butcher knives, batons and handcuffs.
* * *
—
“I quit my job. I’m terrified to tell your father. This is the second time I’ve disappointed him. He’ll think I’m no good. Please don’t tell him.”
“I won’t.”
“It’s not that I want to hide it.”
“Don’t worry about what he thinks.”
“I guess I worry.”
“You’re fine.”
“Thanks. I thought you were mad.”
“Why?”
“Over the summer.”
“Oh, that. You’re just a guy.”
“I’ll stick with being friends, if that’s still an option.”
“It’s still an option,” Molly said.
She told him she was coming to town that weekend. When the weekend came, he put his coat on and hiked up to Quincy Center. There was litter on the street outside the Family Dollar and Irish fiddling coming from the taverns. He went into The Stadium. The room was packed and loud. Guys in football jerseys, their hats on backwards, stood around holding beer bottles while the game played on scores of TVs. In the crowd, a copper-gold flash of hair caught his eye. He worked his way over and found Molly carousing with friends. “Heyyyy!” she exclaimed and embraced him. He reached through the palisade of beer bottles on the table and shook her friends’ hands.
Together they watched the game.
He said he had to go at halftime. He hugged them all goodbye. He kissed Molly on the cheek.
“Tell your dad hi for me.”
“Sure.”
He left the bar. Behind him, a receiver caught a pass and the bar cheered. Across the street, a Quincy construction guy, a bodybuilder in patent leather shoes with the red beefy veiny neck of a bull, skipped by, escorting a petite woman with high heels, round breasts and a cascade of silvery blonde hair into an Italian restaurant on the corner called the Alba—through the window, a scene of candles and white tablecloths, black dresses and dark wine bottles. The evening was just getting started for some people. Corey hurried home to his mother.
* * *
—
During the day, now that he wasn’t working, he had to drive to Star, buy food, prepare it. Strip the sheets, drive to the laundromat, do the laundry. Feed his mom. Give her fluids. Wash the dishware. Take her to the bathroom. Change her clothes. Bathe her. Comb her hair, brush her teeth. Pay electric bill. Gas bill. Phone bill. Get a letter from insurance and not know if it was a bill. What was a claim exactly? Must it be paid? Who to ask? Not know this either. Get email from MassHealth saying they had exceeded their allotted home health aide coverage and would be billed. Know this was a mistake. Not know how to fix it—and nor did Joan who was leaving now for work. Find out they were paying for Gloria’s Robitussin when he had thought it was covered by insurance. Check the bank account and see it was lower, much lower, than he had thought—the effect of debits he had not foreseen. Get a statement from a credit card he was using to buy the groceries. Go in the other room to call the ALS Association and try to reach the care services coordinator. Leave a message asking about Share the Care. It was a nice idea, but who did you share it with?
* * *
—
The weather darkened. The autumn days got shorter. He chained himself to the house. His birthday passed: He turned eighteen. He saw no friends at all except for Joan. He added butter to his mother’s peas and dreamed about the world out there.
When Joan got home from Enterprise, no matter how late, Corey took the baby monitor out to the kitchenette and sat with her and talked to her, listened to her tell him about the outside world, about her job and the people she’d seen.
“How’s work?” They spoke in whispers.
“Fine.” She lit a menthol. “You think she’ll freak if I smoke in here?” She got up on her short strong legs and went to the window. He took the screen out for her so she could sit on the ledge with one knee up and blow her smoke out, her sock foot resting on the sill.
“I’m so lonely for like a girl,” he said.
She bounced her eyes at him and formed a sophisticated smile and dropped the subject and moved on, all in the space of a second.
“You’re growing,” she said—returning to it.
* * *
—
For a few hours on certain evenings when th
ey had a home health aide he could trust, Corey worked at a liquor warehouse on the Southern Artery, cutting open delivery boxes, taking out the bottles of wine and liquor, and putting them away in the storage shelves under the store. The basement floor was raw concrete with a glaze of shellac over it, a sealant to keep out the damp. He stomped the empty boxes flat and put them in the machine, which whipped a loop of bailing wire around them so that the recycler could take them away.
* * *
—
Putting Gloria down to sleep was getting harder every night.
For all these nights, she was lying, unable to move, in varying degrees of discomfort—a state of minor annoyance that would become steadily intolerable. She couldn’t say, “There’s a single strand of hair that’s tickling my cheek that’s going to keep me awake. Can you brush it away please?” She couldn’t say, “Please bend my knees,” “My hand’s trapped beneath me and losing circulation,” “In the process of moving me, my underwear has gotten wedged in my crotch and is making me uncomfortable,” or “The fabric of the bedclothes has gotten folded underneath me.” All she could do was moan.
Through trial and error, Corey had learned the basic things that Gloria wanted. She wanted to lie on her side with her legs bent and a pillow between her knees so her bones didn’t rub together. To keep her from rolling, he tucked a pillow against her back. He put another two pillows under her head to support it at the same height as her spine. A special danger area was her bottom arm: He had to make sure she wasn’t lying on it. Generally, he brought the elbow forward, bent the arm, and let her hand rest on the pillow near her face. Her top arm rested along her top side, the hand laid flat on her hip.
He would begin the night by trying to arrange her in this position. Sometimes she would accept it and the night would get off to a good start. Other times, her body would resist it.