CHAPTER ELEVEN
Richard is awakened by the sound of a key at the door. He looks to his left wrist for the time, an obstinate and futile habit. He hasn’t worn a watch in six months, since the fingers of his right hand lost the strength and dexterity to work the latch on the band. His eyes find the time on the cable box as the door opens: 9:00 on the dot. Ever punctual.
“Mornin’!”
Bill bursts into Richard’s condo, whistling an upbeat song Richard doesn’t recognize, jingling a metal ring of keys like a tambourine. The kitchen and living room lights flick on, and Richard squints against this assault on his senses. Bill puts something in the refrigerator, places an earth-friendly grocery bag on the counter, removes his hat, and hangs his coat on the back of one of the bar chairs. He’s all movement and high energy, a diametrical contrast to the silent inertia he entered. He walks past Richard and lifts the window shades.
“Let there be light!” he says in a dramatic stage voice as he does every morning. “Where you at with the BM?”
“Nothing yet.”
Bill smiles and heads toward the kitchen. Richard can’t imagine how this answer can be a cause for joy, even considering Bill’s often-inappropriate sense of humor. Richard assumes he must’ve misunderstood and is about to correct him when Bill pulls a small white bottle from the bag on the counter.
“This’ll fix you.”
Knowing that breakfast with a side of laxative is not the first item on his morning menu, Richard stands and waits for his Rilutek. Bill pops the pill into Richard’s mouth, tips a glass of water gently at Richard’s lips, and studies Richard’s eyes as he swallows, watching for signs of distress. Richard gets the pill down without any fuss and then follows Bill into the master bathroom.
He doesn’t flinch about being naked in front of Bill. Any modesty Richard had was pulverized to fine dust after their first week together. Bill’s seen it all. He cared for his partner who was diagnosed with HIV in 1989 through full-blown AIDS, Kaposi’s sarcoma, and the pneumonia that killed him in 1991. The experience catalyzed a change in career from travel agent specializing in excursions to exotic destinations on private islands to home health aide specializing in excursions to exotic diseases in ordinary living rooms.
On the books, he’s officially Richard’s morning home health aide, but Richard has come to think of him as equal parts brother, doctor, therapist, and friend. Richard wishes every day that he didn’t have ALS and therefore no reason to have ever crossed paths with Bill, but since Richard does have ALS, he thanks God every morning for this strange, beautiful man. God bless Bill.
Bill turns on the shower, rolls up a sleeve, and checks the temperature several times with his hand before he’s satisfied.
“There you go. Hop in.”
Richard steps up and over the wall of the tub, less than two feet high, an elevation he’s actually measured and is acutely concerned with. Clearing it already takes concentration and conscious effort. At some point in the coming months, his legs won’t possess the strength to raise his feet over the wall. Maybe by then he’ll be in a new condo with a walk-in shower, one he can shuffle his feet into while he can still walk, wide enough to accommodate a shower chair that can roll right into the stall when walking becomes a memory. If not, Bill will have to sponge bathe him. So many wonderful changes to look forward to.
Richard stands with his back to the showerhead, grateful for the heat and pressure and touch of the water spraying his skin, one of the few moments of each day when he still enjoys being in a physical body. He pees. No mess to clean up in here. Just outside the open shower curtain, Bill is rubbing a dollop of shampoo between his latex-gloved palms.
“Let’s have that gorgeous head of yours.”
Bill is bald and openly jealous of Richard’s head of thick, wavy black hair. Richard is openly jealous of Bill’s healthy motor neurons and strong muscles. Slightly taller than Bill, Richard bends over, offering the crown of his head as if he were being knighted. Bill works the shampoo into Richard’s hair, and Richard smiles with his eyes closed, diving deep into this newly discovered carnal indulgence. Head scrubbing for Richard is a hedonistic experience approaching nirvana, almost as sensually pleasing as a blow job. If Bill were an attractive woman, Richard’s pretty sure he could climax off an intense head scrub. He channels every unresolved, agonizing itch he’s suffered through since yesterday’s shower into the sublime satisfaction of Bill’s nails combing the base of Richard’s skull, raking the top of his head, scratching circles above his temples.
The scrubbing stops, and Richard peeks his eyes open. Water is spraying past the open curtain, and suds are dripping down Bill’s forearm. Bill adjusts the curtain and continues. He massages Richard’s scalp well past the point of clean hair. Again, God bless Bill.
He finishes, and Richard rinses. Bill squirts bath gel onto a sponge, and Richard moves out of the shower’s spray to be washed, front side first, then back. Rubbing the sudsy sponge along every inch of Richard’s body, Bill sings “They Say It’s Wonderful” from Annie Get Your Gun.
The whistling and the singing drive Richard nuts. Bill is a Broadway buff and a karaoke fanatic. Every morning he belts out a medley of songs from every era of Broadway, from Porgy and Bess to Oklahoma! to The Lion King to Hamilton. Richard sits proudly on the other end of the musical spectrum. He loves classical piano, the notes alone evoking powerful emotion, each wordless composition translating a privately interpreted journey. Listening to Schumann is like looking at a Picasso, like breathing in God. Listening to Bill serenade him with Broadway tunes is a fork dipped in vinegar, stabbing him in the eye.
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.