But Richard hasn’t shared his distaste for Broadway with Bill. He figures it’s not wise to risk offending the man who washes his penis. So he quietly endures every maddening medley. He’s thought about asking Bill to play music from Richard’s iTunes playlists. They could enjoy getting bathed and dressed to Bach’s Goldberg Variations, Schumann’s fantasies, Chopin’s preludes. As there are no lyrics, this would shut Bill up.
But Richard can’t bear it. He can’t bear to listen to the masterpieces of these great composers, the music playing in the practiced circuits of his mind, never again to be executed by his fingers. The exquisite agony in hearing the music he loves but can never play is far more painful than Bill’s rendition of “Everything’s Coming Up Roses.” So Richard tolerates Bill’s singing. In a million ways, living with ALS is a practice in the art of Zen.
Bill shuts off the water and dries Richard with a towel. The two men move over to the sink. Bill wipes shaving cream onto Richard’s face, finger painting his cheeks, chin, neck, and upper lip. Bill stops singing once he has the razor in hand. Richard watches Bill’s brown eyes devote themselves to every contour of Richard’s face. Bill is breathing deeply and audibly through his nose, and as if it has its own gravitational pull, Richard finds himself inhaling and exhaling in sync. When Bill is finished, he wipes Richard’s face clean with a hot, wet facecloth.
“You look tired,” says Richard.
“Queeraoke last night. I was up late.”
“With anyone special?”
Bill hesitates. “No.”
“Anyone unspecial?”
“I’ll let you know when Ryan Gosling realizes I’m the one for him.” Bill works some styling gel through Richard’s hair and combs it. “You lucky bastard. Look at this head of hair.”
“Yeah, I’m the lucky guy in the room.”
Richard hears the monotone sound of his own voice, still unfamiliar to him, every last syllable of one word bleeding into the first syllable of the next, every word a single note played over and over. D-D-D-D-D-D. Every sentence is the same song. It’s the ALS anthem, lullaby, number one hit.
“You’re not getting any pity parties from me, Handsome. Open.”
Bill brushes Richard’s teeth with an electric toothbrush and wipes the white froth off his lips with the now cold, wet facecloth when finished. The last step of their morning bathroom ritual is the arm massage. Bill begins with Richard’s right arm. He rubs moisture cream onto Richard’s shoulder, biceps, elbow, forearm, and hand, Bill’s strong fingers sliding along Richard’s skin, pressing into abandoned muscles. As with the shampoo, it feels like heaven to be touched.
His right arm and hand are flaccid and passively accept everything Bill does. He wiggles and pulls on each finger. He holds Richard’s arm, the elbow in one hand and the wrist in the other, and gingerly rotates the arm at the shoulder, circling forward, then backward, moving this frozen joint. He lifts Richard’s arm above his head, dragging his fingers down Richard’s skin, squeezing from wrist to armpit, trying to drain some of the edema that plagues Richard in this hand. His limp fingers look like tight sausages due to the fluid that seeps from his leaky veins, pooling in his hands.
Richard watches this exercise somewhat detached, as if his fingers and arm belong to someone else. Yet he feels everything Bill does in vivid detail. Each touch reminds Richard that his arms aren’t completely severed from his body. Even though the efferent pathways are forever out of order, his arms are still connected to his nervous system, the afferent signals of pain, pressure, temperature, and touch completely intact. Somehow, this is comforting.
Bill moves over to Richard’s left arm. Although both arms are completely paralyzed, they look and act nothing alike. While his right arm is hypotonic, a limp noodle of skin and bones, his left arm is rigid, his fingers locked in a deformed claw. The spasticity in Richard’s left arm resists Bill’s touch as if in rebellious disobedience. Bill has to work hard to rotate the arm, to uncurl each stiff finger. Richard tries to will his misbehaving fingers to relax. He has no influence over them.
Done in the bathroom, they walk to Richard’s bedroom dresser. Bill knows where everything is. He chooses underwear, socks, jeans, and a gray crewneck, each with Richard’s approval. Bill then dresses Richard like a parent dresses a small child, like a girl dresses a favorite doll, like a home health aide dresses a grown man with ALS.
Bill pulls a pair of old loafers from the closet, and Richard worms his feet into them. Lastly, Bill loops the lanyard holding Richard’s iPhone over Richard’s neck as if it were an Olympic medal, clips the Bluetooth connector to his shirt collar, and presses the Head Mouse target sticker to the tip of his nose. There. Richard checks himself in the mirror. As always, Bill did a fine job. Richard is dressed and ready to go out, as if he has somewhere to go, as if he’ll ever be expected anywhere other than the hospital ever again. Except for the ghoulish hang of his arms, his protruding belly, the extreme thinness of his face, and the absurd sticker on his nose, he still recognizes himself in the mirror. He wonders if at some point he won’t.
They make their way to the kitchen. Bill opens the refrigerator door, that impenetrable vault, with an easy, unremarkable tug and begins pulling ingredients for this morning’s smoothies. Richard’s favorite recipe is peanut butter, banana, yogurt, and whole milk, with dashes of protein powder, flaxseed, citalopram, and glycopyrrolate. Today’s special will include the addition of a laxative. Yum.
Richard looks out the living-room window. He knows from Bill’s winter coat, hat, and gloves that it’s cold outside, but the day appears sunny, inviting. He looks at his desk, the bookcase, the TV, the piano, exactly as they were earlier this morning, yesterday, the day before that, the month before that.
“I think I’d like to go for a walk when you leave.”
Bill removes the lid from the blender and gives Richard a long, serious look. Richard hasn’t gone out alone, unattended, since his left hand went dead.
“I’d feel better if you waited for Melanie.”
Melanie comes at 1:30, three hours after Bill leaves. Richard hates that he needs Bill’s permission to leave his own home, but there’s no other way. If Bill shuts the door behind him when he leaves, Richard is trapped inside his condo, his living tomb.
“I’ll be fine. Just leave my door open.”
“What about the front door?”
“I have my neighbors’ phone numbers. Someone will let me back in.”
“Who’s home?”
“Beverly Haffmans should be around.”
Bill approaches Richard and leans his mouth over the phone resting on Richard’s chest. “Launch voice control,” Bill says slowly and clearly. “Call Beverly Haffmans.”
The phone rings on speaker.
“Hello?”
“Hi, Beverly, this is Bill Swain, your neighbor Richard Evans’s home health aide.”
“Oh, hi there. Is everything okay?”
“Yup, everything is fine here. He’s going to go for a walk this morning. Are you going to be home to let him back in the building?”
“Oh, yes. I’ll be here. I can do that.”
“Okay, great. Thank you, Beverly. Bye now.”
Bill returns to the blender and peels a banana. “I still don’t like it. If I didn’t have my next client right after you, I’d go with you. You sure you can’t wait until Melanie?”
“I’m sick of being in here. I can still walk. I’ll be fine.”
“You’re wearing your brace.”
“Okay.”
Bill makes four smoothies without singing, a sure sign that he’s uncomfortable with this plan. Worried that conversation might lead Bill into verbalizing his concerns, and that might in turn convince him to change his mind, Richard keeps quiet. Bill plops a straw into each drink and then leaves the kitchen.
Richard steps up to the counter, bends his head to the straw of the first glass, and sucks the smoothie steadily down. He was so hungry. And while these drinks are thick and
filling, they’re far from satisfying. What he wouldn’t give to chew on a steak. Or even a piece of toast.
Bill returns with the foot brace and a winter coat, hat, and mittens and squats down in front of Richard. Familiar with this drill, Richard lifts his right foot without direction. While holding Richard’s leg to stabilize him, Bill removes the shoe, fits the ankle foot orthotic over Richard’s sock, and returns the shoe to his foot. Bill then threads Richard into his coat, pulls the iPhone out so it lies on top of the zipper, clips the Bluetooth connector to the coat collar, fits his hat on his head, and works his lifeless hands into the mittens.
“I’m putting a key to your building in your right coat pocket in case Beverly doesn’t answer. You’ll ask someone to open the door for you, okay?”
Richard nods, knowing this won’t be necessary.
“Okay, my friend.” Bill dons his own coat. “You’re all set. I’m still not a fan of this idea. You sure I can’t set you up with something on Netflix?”
“No. I want to get out of here. I know you have to get going. Let me just drink one more.”
He finishes a second smoothie while Bill slips on his hat and gloves.
“Okay, let’s do it.”
Bill opens the door, and they leave without shutting it behind them. Richard takes each step down the stairs consciously and carefully, wanting to prove to Bill, who is walking backward in front of him and most certainly assessing the competence of every step, that he’s perfectly capable of walking alone. They pass through the grand foyer, Bill opens the front door, and they walk outside.
The air is face-pinking cold, but it’s clean and breezy and instantly feels far more vital than the confined air Richard has been stewing in for too long inside. He takes a deep breath and sighs out the exhale. He takes in the passing traffic, the people walking on the sidewalk and in the park, a baby stroller, a bicyclist, a dog, a squirrel. He smiles. He’s among the living again.
Bill pats him on the back. “You’ll be okay. See you in the morning, Ricardo.”
“Thank you, William.”
Before he sets off on his own, Richard watches Bill hurry down the street, an angel on his way to the next bathroom, bedroom, and kitchen, to someone with MS or cancer or Alzheimer’s, washing hair and teeth and genitals, massaging and dressing and feeding, singing show tunes to all as he does, and, for some, giving them the freedom to do as much as they can while they still can.
God bless Bill.
CHAPTER TWELVE
Three blocks from home, Richard walks through the gate of the Public Garden and is already exhausted. When he’s simply standing still or walking from his bedroom to the living room, his legs feel sturdy beneath him, still capable and responsive, normal. At home, he can convince himself that ALS might only ever affect him from the waist up. Maybe he’ll return that hideous $27,000 wheelchair that wasn’t covered by insurance. But in his fourteen-hundred-square-foot, one-bedroom condo, he’s not asking much of his quads and hamstrings and calves.
Three blocks from the front step where Bill left him, he’s completely sapped. His legs have become sandbags, his bones filled with rocks, impossibly heavy, and he lacks the energy to move them. Even standing still is shaky. He needs to sit down. Around the bend past the statue of George Washington on his horse, Richard spots the nearest bench and tries to estimate how many steps away he is. He guesses about thirty and seriously wonders if he can make it.
This is not normal. It’s not normal for a three-block walk to wear out a forty-five-year-old man, potentially defeating him thirty steps shy of his destination. There’s no denying it. ALS has crawled its way into the motor neurons that feed the muscles of his legs, and walking three blocks is the pathetic molehill large enough to unmask its sinister invasion. He imagines his body’s resistance to this attack, the molecular war in the fight against ALS at every neuromuscular junction, an invisible army, outnumbered and outgunned, deployed to fight this insidious enemy for as long as it can. The army holds its ground in Richard’s legs when he is home, but when it has to divert half its soldiers to the mission of walking to the Public Garden, the resistance becomes compromised, ALS advances, and the enemy is poised to take control. His army calls back the troops. Every soldier is needed in the trenches. No more walking!
But he presses on, every step a grueling punishment. He hears Bill’s, Kathy DeVillo’s, and his neurologist’s voices scolding him in his mind. It’s dangerous for him to keep walking when he’s tired like this. His coordination gets sloppy. He’s especially worried about the possibility of dragging one of his tired feet, stubbing a toe on the uneven pavement, tumbling him to the ground. With no arms or hands to break his fall, every wipeout is a potential head trauma, broken bone, and trip to the emergency room.
Twenty feet from his goal, he’s fast running out of gas and faith. Still heavy, his legs now also feel flimsy, a teetering tower of wooden blocks that threaten to collapse beneath him with every step. His blood races through the vessels of his body, rushing through the chambers of his heart, begging him to hurry up and get to the bench before he falls. He looks around. He counts five other people close enough to hear him if he yells, but they might as well be in Timbuktu because he’ll never ask any of these strangers for help.
And he’ll never ask his father or brothers in New Hampshire or his daughter in Chicago. And he can’t ask Trevor in New York or his medical team at Mass General or even Bill, who is somewhere with his next client. He is alone in the Public Garden. He’s alone in his home. He’s alone in his ALS. And he’s suddenly, overwhelmingly terrified.
He can barely breathe, but it’s fear that’s strangling him, not ALS. Each inhale seems to stoke a building terror, as if his blood now carries panic instead of oxygen. The fear grips his entire body like a vise, a cage around his lungs, more paralyzing than his disease, and he can’t move. Sipping sharp tastes of air, he has to keep going if he’s going to make it to the bench. He finds a pep talk, a mission statement. Keep going. He takes small steps, small breaths. His eyes are married to the bench, and when he’s close enough, he leans forward, forcing his legs to keep going. It’s the bench or bust. Keep. Going. Keep. Going.
Two more wobbled steps, and he crash-lands face-first into the bench. His right cheek, shoulder, and hip already throb. He’ll have bruises by morning, which Bill will demand explanations for. He rights himself and sits victorious but feels nothing like a winner. The panicked fear flushes out of his system, leaving him rattled, wrung out, warned. He looks back along the path he traveled and beyond the garden gate. A little more than three blocks and a long way home. Too many steps to estimate. Too many steps, period.
Worst-case scenario, he’ll spend the next two hours on this bench. Melanie will call him at 1:30 and retrieve him. But he hopes for better than the worst-case scenario. Always has. He’ll rest awhile and hopefully recharge his leg muscles and courage enough to make the journey home on his own.
The garden is tranquil this time of year. He spots a couple of ducks in the pond, but the swans and swan boats are gone for the season. The tourists are gone, too. The people walking by him are Bostonians: a young Asian man, likely a student, bent over at the waist, hauling a backpack thicker than he is; a woman in sneakers and a massive black winter coat carrying a large black umbrella, her eyes focused on the ground—Richard looks up at the clear blue sky, perplexed—a corporate woman carrying her dry cleaning with two fingers, the winter wind blowing the clear plastic sheath covering her hanging clothes behind her like a sail, her purse bouncing off her hip on the downbeat of every left step, her heels beating the ground in a half-time tempo, late for something; a short Italian guy, his stomach leading way out in front of him, gabbing on his phone in a thick Boston accent, his walk a swagger in expensive-looking leather shoes.
Most of the people who pass Richard are traveling alone, stone-faced, white cords dangling from their ears as if they’re robots powered by the devices they hold. No one looks at him. It’s not that they see
him and look away. They never notice him in the first place. He’s part of the background, as uninteresting as the bench he’s sitting on.
A sparrow leaps onto the wooden seat a brazen few inches from him and tilts its head from side to side. They make eye contact, and then the sparrow hops to the ground. It pecks at something there and flies away.
Everything living is in motion, going somewhere, talking, walking, pecking, flying, doing. Life is not a static organism. Every day, he’s a little more shut down, shut in, turned off. A little less in motion. A little less alive. He’s becoming a two-dimensional still-life painting, slipping inexorably into the alternate dimension of the sick and dying.
A woman passes him. Something about her reminds him of Karina twenty years ago. Her long hair and that purple scarf. He met Karina in Sherman Leiper’s Technique class. Although he noticed her on the very first day, it took him most of the semester to talk to her. Fresh out of public high school in New Hampshire, he had no experience with girls yet. When he was a teenager, his father regularly discredited Richard’s masculinity in obvious digs and under-his-breath derogatory comments. In a home and town where jocks ruled, a boy who loved tickling the ivories was seen as unmanly and decidedly uncool. Already cast aside by his father and brothers and boys in his grade, he couldn’t risk adding more rejection from Jenny or Stacey or any of the other cute girls he had crushes on. Instead, he channeled his private feelings of longing and unrequited love into his playing. He devoted his attention to piano instead of girls, and he insulated his young heart from the pain of being judged weird or wrong or not good enough by pretending not to care what anyone thought of him.