by Atticus Lish
When the woman finally let her leave, Gloria went outside and sat on a bench on the redbrick sidewalk under the blue sky and took her son’s card out and opened it. He had drawn the card himself: a three-masted schooner with all its complicated rigging, sailing for the horizon, and put her at the helm. He had written “Fair winds and following seas to you, Mom!”
She called his cell and left a message. “Corey, I got your card. It’s so beautifully drawn! Thank you!” She controlled her voice. “You’re my bodhisattva.”
She took the trolley to Park Street and changed to the Braintree train, hiding her face from all the people on the T. The city ran like clockwork. It had never been more enlightened. All of Boston was a college town today. On the stroke of the hour, the bus left from Quincy Center and took her out to the shore. The spring day was still bright when she saw the ocean. The neighbor kids were playing, little girls and moms in tank tops, just visible through their wooden fence, their voices carrying sharply. The sea of marsh grass that rose behind them hissed and twittered, birds making short flights among the reeds. Gloria closed herself in her house.
* * *
—
When Corey got home he found her in a leaden apathetic state, her eyes red and wads of Kleenex lying around her on the couch, and he found out about the horrible thing that had happened.
“ALS—what does that mean? I mean, what are you telling me?” he asked. What was any of this? What was the meaning of her slumped posture and all these tissues? She was sitting on the couch acting like a little girl who had been yelled at. Where had his mother gone, the person he had seen this morning? What did neuromuscular degeneration have to do with them? And why did she keep crying?
“I’m going to die!” she screamed.
He brought her a glass of water with his hands shaking and kept whispering, “I’m sorry.”
She got up and walked away leaving the glass on the table next to the pile of literature she’d brought home from Beth Israel. The top pamphlet was called ALS: What’s It All About?
He went to his room and listened to music on YouTube with his earphones in. An hour later, he heard a disturbance in the kitchen. It was his mother making dinner. She asked him if he wanted tofu, as if nothing had happened, and he said yes.
When they were eating, he broke the silence and asked her if there was anything he could do.
“Just help me wash the dishes.”
She put a piece of tofu in her mouth. He looked at her and saw tears running down her face.
After dinner she wandered back to her room, and he went to his room. In the middle of the night, he got up and found that no one had turned the lights out. It was three in the morning and a kind of absolute silence prevailed. Her medical papers were strewn across the coffee table. Her door was half-open as if she hadn’t had the energy to shut it all the way—a mouthlike shadow-gap through which he listened for the sound of her breathing.
* * *
—
The weekend was forty-eight hours long and it passed like one endless day, a day on another planet, one with a longer orbit, interrupted by periods of darkness during which neither of them really slept. On Monday morning, he had been awake for hours when he heard her getting ready.
“Mom, are you going to work?” he asked through the bathroom door.
She came out wearing her flowered wraparound skirt, her face artificially smooth and young, surfaced with blush and lipstick. He followed her out to the car and watched as she backed out and accelerated away in her small underpowered vehicle.
The greater-than-mankind vista of sky and bay, the saltbox houses across the street, boats in the yards, and the city skyline across the bay catching the morning sun, trees cooling the road which curved out of sight, behind him the marsh grass glowing orange in the sun, heating, giving off the smell of grass and salt: It was, he could appreciate, what you would normally think of as a beautiful day.
He was supposed to go to school. He went back inside and his eye fell on her pamphlet. He sat down and read it.
Late in the morning, he caught the bus to Quincy Center. Except for the heaving engine, they drove in silence, swinging side to side on the curves, up the road past the dark brick apartment buildings backed by trees, the historic graveyard. The man ahead of Corey had the emblem of the New England Patriots tattooed on the back of his neck. Hardly anyone else was riding. The town had emptied after the morning commute and the T station was desolate. Construction workers on a city project sat on the ground in the shade eating their lunches.
Sitting in a pizzeria, he spent an uncertain length of time quietly aware of the sunlight shifting outside the shaded windows, the noon intensifying, shadows drawing back under doorways with For Rent signs in them. The day was becoming an outdoor version of what he had been doing indoors all weekend long: wandering from place to place without any idea why.
* * *
—
Sometime in the afternoon, he found himself on the other side of the Burgin Parkway in Star Market’s huge asphalt parking lot, under a flat blue sky. A woman with a chipped tooth was smoking a cigarette the mandated forty feet from the supermarket’s entrance, wearing an employee’s vest and name tag. Behind her, big plain words said: Pharmacy, Liquor, 1-hr Photo.
Corey asked her if the supermarket was hiring for the summer.
“For what, the front end?” She told him they had a website he could check.
Corey asked if he shouldn’t go inside and talk to someone.
“You could.”
“That’s not a good idea?”
“They’re just going to tell you to go on the website.”
In the evening, having skipped school that day, he hiked back along the parkway to the T station. It was attached to a multilevel parking structure. The commuter rail ran beneath it. On the steps out front, a scattering of people waited for buses, some nurses in scrubs; others, backpack-toting day students returning from community college; all looking at their phones.
A park adjoined the station: a lamppost, three benches, and a memorial to Quincy’s Men of Honor, who had served in wartime. A well-trimmed lawn. A clutch of drunks had gathered there, slurring and cursing over some injustice perpetrated by the cops. A freckled woman with a cheerful red ponytail was busy putting makeup, not on her face, but on the crooks of her elbows, where the needle marks would be. The street people milled between the park and the station. A youth wearing a backwards Bruins hat sidled through the commuters, casting his chilling gaze on adults as the subway coughed them up.
Corey went inside the station past placards bearing route maps. An older woman in a transit worker’s blouse was leaning against her bulletproof booth watching the turnstiles. To justify his presence, Corey pretended to buy a subway pass at an automated vending machine, pressing the touchscreen, bringing up the options, repeatedly hitting Cancel.
His mother would be heading home now too. She had taken her disease to work, and now she would be bringing it home. He thought he should be there to meet her.
As he turned to go, the T agent cocked her head at him, and he went over to her dutifully.
“Having trouble with the machine?”
“How do you know if a Charlie Card will save you money?”
“You’d be eligible for a student fare. Hasn’t anybody explained this to you?”
“I have a student pass; I was going to get a card for my mother.”
“Where does she go?”
“She works in Fields Corner. Once in a while she also likes to go to JP. She can drive, but she just got diagnosed with Lou Gehrig’s disease.”
“Oh, I’m sorry.”
“Yeah, she’s feeling really bad, so I’m just seeing what I can do.”
“I’ve heard about that. That’s a bad one, isn’t it? Lou Gehrig?”
“Yeah it’s really bad. It’s also
called ALS.”
“Is that the Ice Bucket Challenge?”
“I’m not sure.”
“I think I saw something on that. It was terrible. My sympathies to your mother.”
“Thank you.”
About fifty years old, the transit worker was skinny and pale as if she’d been surviving on potatoes and fluorescent light. Her bones weren’t big enough to hold up her uniform, but she had a long hard jaw.
“Tell you what I’ll do: I’ll give you a card for her.”
The woman took a Charlie Card out of her wallet and handed it to Corey.
“You can charge it up. Tell her to keep it with her cards for when she rides the T. All she has to do is tap it and she can go through.”
“Thank you! Are you sure?”
“Go on, take it!”
“And that’ll be better for her, right?”
“That’s way better: two ten versus two sixty-five every time.”
That night, he presented the Charlie Card to his mother. She put it with her medical papers and it remained with them well into the summer before getting lost.
* * *
—
The first word in amyotrophic lateral sclerosis means “no-muscle-nourishment,” from the Greek. The motor nerves start in the brain and run down through the spine like a telephone trunk line and branch out to the extremities to control the voluntary muscles. When a motor nerve dies, the muscle dies with it. Symptoms include fasciculation, spasticity, weakness and atrophy, and are progressive, meaning they get worse. Weakness often begins in the hand and moves to the arm, the leg, the opposite leg, and the opposite arm. The pattern of spread follows proximity in the motor cortex. Each point in the motor cortex maps to a location on the body, like an acupuncture chart. There is a map of the body in the brain.
Fasciculation, a new word to most people, refers to tremoring, a sign that the nerve is shorting out. The patient may feel as if her muscle has been hooked up to a battery. She may be tricked into thinking that she is coming into new life.
No one knows exactly what causes ALS. An unknown chemical event triggers a chain reaction that destroys the motor system. The ALS patient will progressively lose function until she is almost completely paralyzed. Death usually comes within three to five years, by way of respiratory failure.
The rational approach to managing this disease is based on looking ahead. At each stage, the goal should be to slow loss of function and maximize quality of life—and to prepare as much as possible for the next stage. Immediately after diagnosis, the patient should make certain she has and understands her medical insurance. She must plan ahead for when she cannot work or care for herself.
In the early stage, the patient can still walk and perform activities of daily living (eating, dressing, bathing, hygiene, housekeeping), but these functions will decline. To maintain independence, she can substitute Velcro fasteners for laces, zippers and button closures on shoes and clothes; use specially designed tableware that is easier to grasp; and open jars using a clamp device. Myriad innovations are possible. To remain ambulatory as her strength declines she will need a walker. Orthotic foot support is recommended to prevent tripping due to toe-drop, a condition caused by weakening shin muscles. After a certain point, she will graduate from a walker to a wheelchair. Equipment might not be available when the patient needs it; orders can be slow, and getting insurance company approval can add to wait times. All equipment should be ordered in advance.
In the middle stage of the disease, the patient is wheelchair-bound and can do little, if anything, for herself. She will have to rely on others to shop for her, to feed, bathe, dress, and groom her, to clean her house, control the TV and take her outside. Who will these others be? They will have to be patient, loving and willing to help. She will be losing the ability to speak. To communicate with those around her, she can resort to various technologies, from a letter board to an iPad that reads eye movement and sends output to a voice synthesizer.
As chewing and swallowing muscles progressively weaken, feeding becomes a challenge. Caretakers should prepare—and she should try to eat—soft, pureed foods. Foods with about the same viscosity as mashed potatoes are easiest to swallow. (Water and tough foods like steak, respectively at opposite ends of the viscosity spectrum, can both cause choking.) She’ll need a food mill or Cuisinart. A sippy cup helps reduce mess. Mealtimes will be hard on both the patient and her caretakers. She will choke on her food and spit up. Some patients rely on a motorized suction device to clear excess salivary secretions, another symptom of this disease.
A healthy person moves involuntarily, redistributing pressure on joints and body surfaces. Severe discomfort results from sitting/lying too long in one position without moving. The ALS patient will have to rely on a caretaker to move her, especially at night. Given that by now she cannot speak, only moan, a baby monitor next to her bed can tell her caretaker when to come and help her.
At the end stage, the patient will have the option of receiving two surgical interventions: a feeding tube (PEG), and a breathing tube. These interventions can keep her alive. She must decide if she wants them. She can decide in advance by means of a living will or advance directive. She can also appoint an agent to make these decisions on her behalf. Law protects the patient’s right to change her mind, as long as she can make her wishes known. Intubation creates the risk of a locked-in state, being kept alive against her will. It is important to remember that the disease will continue to progress no matter what she does.
ALS affects the voluntary motor system. This excludes the heart and the smooth muscle of the digestive system, which function autonomically. It is commonly thought that breathing is autonomic, but consider: You can hold your breath. Therefore, ultimately the disease will spread to the patient’s diaphragm, taking away her ability to breathe.
When they are diagnosed with ALS, some patients are willing to face the disease and plan ahead for it. Others only face it when they are forced to.
3
The Hibbards
Corey’s school year ended in June. Star Market hired him for the summer. From the parking lot where he chased down grocery carts, he could see the back of more one-story shopping center construction—loading docks and dumpsters, rooftop ventilation. White clouds moved across the blue sky like shipping traffic overhead—low over the suburban roofline, following the wind out to sea.
One afternoon, a white Ford pickup with a Knaack Box in the back swung in off the parkway. The driver parked and came this way on foot, wearing shades and a biker’s do-rag. Corey watched him come. Six feet tall, slow-walking, he carried his keys in his hand. There was something grudging in his bearing as if he were angry and wanted to be left alone.
Corey called out a greeting, which the man returned. His name was Tom Hibbard and he was Corey’s friend. The hint of surliness that smoked off him from a distance had a tendency to vanish up close, buried under careful decency.
“What’s going on.” He shook the boy’s hand gently. Tom was a tin knocker. He had an unusually strong hand.
Corey followed him into the market. Lifting his shades, Tom planted his boots and stood like a lighthouse, looking back and forth. “There’s the beer.” He made a cleaving motion with his thick hand, as if he were showing a line along which he would cut—through the intervening aisles, if necessary—and then set himself in motion along this line.
Corey followed Tom while he picked up a case of Sam Adams.
The checkout girl, an energetic young woman who knew the PLU code sheet by heart, was so experienced she told managers what to do as it pertained to her job—coupons, bad meat, returns. Handling the customer ahead of them, without bothering to look up, while dragging cans of cat food over the barcode reader, she knew exactly where Corey was and where he was needed.
“They need help on eight.”
“I’ll go to eight.
Just let me get this to his truck.”
He pushed Tom’s cart outside.
“Hey, kid, I got it from here. I don’t want you to get in trouble.”
“It’s no problem.”
“Nothing against any job, but you wanna work in there? I’ve worked on supermarkets, but I’ve worked on top of them. See that building? I forget what they have in there, a T.J. Maxx or whatever, but I did the air for them. All those rooftop units, those are us.”
Corey looked across the parkway with admiration.
“Give me your number. I might know a guy who could use a helper.”
Corey insisted on putting Tom’s beer in the truck for him. He strained himself lifting it over the tailgate.
* * *
—
He had met Tom the year his mother had brought him out to Quincy—on a summer day. Eleven years old, trudging up the Adams Shore, carrying his skateboard, Corey saw a Viking-bearded man working on a ladder inside Quincy Steel & Welding and thought he was a sea captain visiting dry land.
The man saw him looking.
“We’re putting a fan on the roof. We’re gonna use a crane to put it up there. You wanna see the crane? Come on, I’ll show ya.” And he walked the boy outside and pointed at the crane and the rooftop fan that would sit on the pedestal he had built for it.
“It has to sit like this.” As he spoke, Tom used his hands to form planes—cleanly vertical or horizontal—the right angles Corey would learn he insisted on—chopping them carefully out of the air. He showed widths with his fingers; described mechanical actions with his hands. To put the bolts in, they had to come in from underneath—and he corkscrewed his hands up like a pair of surfers shooting up the inside of a curling wave.
Thereafter, Corey said hi when he saw Tom around town. He hung around him, watching and listening as he worked with other men. He met his young relations, his many nephews, in the playground. They skated away the summer days, sometimes seeing the man from a distance and discussing him.
