by José Sotolongo
The first time he lost his erection, the April he turned forty-six, he thought, “Oh, oh. Here we go. Downhill.” But he had had too much wine with dinner, and Ramona was her usual placid self. She went to sleep and that was that. But Alfred stayed awake and worried. There were other little things happening to his body the past few weeks. Legs heavy going up stairs. Inability to clear morning phlegm from his throat.
The next time they tried to have sex a few days later the erection was there but didn’t last. His doctor prescribed a pill that worked, but you had to plan an hour or two ahead, and who did that? Who scheduled sex as if it were a dental cleaning?
Ramona was less of a good sport about it the second time. He kissed her nipples and used his hands, and she responded, but there was a subtext of irritation to her vocalizations, an atypical restraint. The third time they tried she just kissed him and said, “It’s okay, hon. Let’s just go to sleep.” Her good cheer had always been a comfort to him, like a canopy over their bed, and he felt it levitating away.
That May, Alfred was at the grand in the living room practicing a Bach fugue in G minor, which he had played in concert dozens of times. He ruined a section that came after a brief pause, his fingers not able to resume in time, and he stopped playing, confused and scared. He had been flubbing phrases the past few weeks in pieces he practiced frequently, pieces he had recorded and played for years. He didn’t understand why it was happening, and wondered whether it was a function of his getting older. But he knew that pianists worked well into their seventies and eighties, and often got better in those decades.
This total freeze of his fingers today was new. He felt his forehead covered in cold sweat. Ramona came into the living room from the den, where she was painting, brought in by the prolonged silence.
“I don’t know what’s going on. My fingers just stopped.”
“That’s weird,” she mumbled, frowning at the keyboard, as if she was blaming it.
Alfred held out his hands and watched as they twitched. He thought he might faint. Ramona went to him and took his right wrist. “What the hell is this all about?” she mumbled.
He took a break and went to the den with her to watch cable news, which she kept on while she worked on her paintings for an upcoming show. Instead of going back to the oils, she sat with him on the sofa and ignored the table by the window with the paints and brushes. She held his large, right hand and massaged the fingers, then did the left. Her own hands were child-like, proportionate to her compact body. Her short fingers had a precision with the brushes that was surgical.
“When’s the next concert?” she asked.
“Two weeks. Chicago.” He stood up. “This is crazy. I have to get back to work.”
“Maybe you need a break. We haven’t had a vacation in years.”
“I’m booked solid the next year. I can’t just blow that off.” He had raised his voice, which he only did when she interrupted him in the middle of a piece, something she rarely did. And as usual when he flared at her, she raised her eyebrows and walked away, back to her painting. Her body, the size of a twelve year old, remained erect and proud.
The headline for the review in the Chicago paper was “Titan Falls.” Alfred never read reviews, but at the airport, waiting for the flight home, he winced and sank in his seat when he saw the banner on a paper held by a man sitting across from him. And indeed, the evening had been disastrous, the audience applauding politely at the end, a humiliation that contrasted with the exuberant greeting his reputation elicited when he first appeared. He made several gaffes in every piece, and considered stopping at intermission, but was incredulous of what was happening, convinced that it would resolve at any moment. The chilled sweat on his forehead and his upper lip dripped on his hands and the keyboard.
After the last piece on the program, the subdued ovation stopped after his first exit, and the audience did not bring him back, the first time in his career he had not played an encore or two. He went back to his hotel confused and terrified, declining an invitation to dinner by patrons of the concert series.
When he landed in Newark the next day, his legs felt stiff and heavy as he exited the plane. He wished he had walked around during the two hour flight. On the jetway into the terminal, his right leg stopped moving mid-step and he fell, landing on his carry-on. Several passengers stopped and helped him up. He was embarrassed, being mistaken for a frail invalid, and declined further help. In the terminal he sat down to catch his breath and tried to move his stiff legs. He rested his hands on his lap, and saw that they were flapping as if they were waving at someone. He fumbled for his phone and called Ramona.
“Can you come get me?”
“Al, you have the car.”
“Something’s wrong. I can’t drive. Please find a way.” He hung up.
Ramona found a neighbor who drove her the twenty miles from their home in Maplewood to the airport, and found Alfred in the baggage claim.
“Something’s up with you. You need to see Dr. Stevens,” she said once she had pulled out of the parking lot. “I’ll make the appointment when we get home.”
“You’ll do no such thing. Nothing’s wrong. I’m fine most of the time.”
Ramona stayed silent the rest of the drive home. When Alfred tried to climb the stairs to the bedroom, he had to stop at every step as she watched from below. That evening, while they were in the kitchen getting leftovers assembled for dinner, she said, “We have an appointment with Dr. Stevens tomorrow at one.”
Alfred picked up the open container of chicken salad he had just set on the table and threw it on the floor. Ramona looked at the mess, looked at him, and walked out of the kitchen.
Dr. Stevens greeted them with his usual big smile, long white teeth surrounded by cinnamon lips in a sienna face. He examined Alfred alone, then brought Ramona into the room.
“I have a suspicion of what it is, but I think you should see a neurologist.”
“A neurologist?” Alfred’s tone was skeptical. Ramona looked at him as he shook his head.
“What is it? What do you think it is?” she asked.
“I want a neurologist to confirm, but I think it’s Parkinson’s.”
“How can that be? Aren’t I too young for that?”
Dr. Stevens shook his head. He had small pimples on his neck from shaving. “Not at all. Some forms start early.”
Ramona drove home. They were silent most of the way. “I don’t like that Dr. Stevens,” Alfred said.
“He’s always been good to us. He’s never been wrong.”
“Well, he’s wrong now. I want a second opinion.”
“The neurologist will be the second opinion. She’s the expert. Even Stevens said that, right?”
Alfred said nothing else the rest of the ride.
On the driveway, Ramona saw he was trying but not succeeding in swinging his legs out of the car. When she went to lift his struggling legs, he swung his hand at her face but didn’t make contact. She stepped back and watched as he stumbled out and took small steps into the open garage, then closed the passenger door he had left open.
The neurologist was a stout, middle-aged Indian woman who shook both their hands but did not smile. She wore no make-up and her grey-streaked black hair hung straight down to her jawline. She examined Alfred, giving short commands, not making eye contact: stand, hold out your hands, walk heel to toe. She checked the muscle strength in his hands, his legs. It took almost an hour. Afterwards she spoke to them and looked at Ramona more than at Alfred.
“Given how recently this started, the quick progression, and my findings today, I would say you may have ALS, also known as Lou Gehrig’s Disease.”
Ramona gasped, and Alfred’s mouth was paralyzed, all saliva gone. He thought he might faint, saw spots in his vision.
“We’ll need to do an MRI.” Dr. Singh said. “It will be diagnostic.”
At home, Alfred went to the den and looked at Ramona’s paintings, dynamic, colorful abstracts that he loved. He wanted to touch the textured layering of the paint, which always brought him pleasure, but wasn’t sure they were dry enough yet. He turned the TV on, not wanting to even look at the piano.
In the kitchen, Ramona read on line:
…characterized by relentless degeneration of corticospinal tracts, anterior horn cells, or both. Symptoms include muscle weakness and atrophy, emotional lability, and respiratory compromise to the point of needing mechanical ventilation. Death is usually from complications associated with immobility and respiratory failure. There is no treatment other than supportive measures.
He tried practicing the day after he saw Dr. Singh, but his fingers on the keys were erratic, disobedient, the notes he produced so wrong and slurred he closed the keyboard, rested his head on the grand and tried to cry, thinking that doing so would ameliorate his hopelessness and sense of doom, but all he could do was whimper like a puppy. Ramona stayed away in her corner of the house, finishing her abstracts for the show.
For a few days his symptoms seemed to improve, or at least not worsen, and he tried playing the fugue again, but his ears could not stand the butchery. He tried an easy Chopin etude, and produced a recognizable, amateurish version. But he persisted, thinking the MRI might prove the neurologist wrong, and that he should practice for the day when a hitherto obscure treatment resolved his illness, whatever it was. He would relish rubbing Dr. Singh’s face in her own presumptive and wrong diagnosis once the MRI results were in.
He worsened again two days later, the day of the MRI, and he awoke having trouble speaking clearly, his tongue sluggish in his mouth. When he got the results from Dr. Singh on the phone, his vision darkened for several seconds, and he felt the abyss of unavoidable death, now certain and proximal. The hopelessness paralyzed him as he stood by the phone, until Ramona put her arms around him and cried. He didn’t push her away, but did not hug back, and his eyes stayed dry, desiccated by anger.
He called his agent, who didn’t recognize his slurred, staccato speech.
“Alfred?” Jerry said. “What’s wrong?”
“ALS. Lou Gehrig’s Disease. No cure.” It came out: Ay-eh-ess. Oo Gue-igs Disiss. Oh cue.
“Can you put Ramona on?”
“This has nothing to do with Ramona. I can’t play anymore. Cancel Boston.” This nah’n to do Ramona. I can’ play ‘neemore. Cancel Bossen.
“Boston? That’s in three weeks. No chance you can get better by then?”
“Jerry. Please. Cancel everything.”
After he fell twice, he allowed Ramona to help him in and out of the tub. She bought a plastic shower seat. “It looks like a fucking nursing home in here,” he said.
He started having trouble getting in and out of bed or a chair, but struggled without asking Ramona for help. She watched out of the corner of her eye. When he remained still, head down in defeat, she swung his legs from the bed to the floor, or gave him an underarm assist out of a chair with her forearms. No sooner was he in the new position, he swung his hand at her in annoyance, but didn’t make contact.
A few days after the MRI results, Ramona tucked a napkin under his chin to catch the forkfuls that fell off on the way to his mouth.
“I have my show in San Francisco next week,” she said as she was clearing the kitchen table.
“I’ll be gone four days.”
“You have to go?”
She didn’t answer right away. “We’re going to need the income now more than ever.” Her voice was just above a mutter. She continued loading the dishwasher without looking at him.
Alfred struggled to push his chair back away from the table. She went behind him and pulled it out, then offered her forearm for him to hold on to. He swatted it and the smack was like the crack that ignites lightning. She sat down at the table and looked at him. Alfred looked for anger or reproach, his just rewards for the eruption of nastiness, but saw nothing other than sadness, maybe even distress, in the wrinkles of her forehead.
“We need to hire a nurse to be here while I’m gone.”
“I don’t need a nurse. You’re not a nurse, and you do fine.”
“An aide, then. There are agencies in Newark.”
“Let’s not rush into this. It’s expensive, and I don’t want a stranger here. I should be fine for a few days.”
“I’m not asking.” She got up and continued loading the dishes. When she was done, she said, “Call me if you need help getting up.” She stopped on the way out of the kitchen and looked at him. He nodded, keeping his chin tucked.
Esperanza was massive, although shorter than Alfred. Her biceps looked like footballs under her scrubs, her thighs like traffic cones, and the hips basketballs flaring out from an impossibly narrow waist. Her narrow shoulders and proportioned breasts looked like transplanted parts from a normal human.
Ramona brought her in the day before her trip to show her the house and the routines, but after an hour she wanted to leave.
“It’s okay. I’ll figure it out. I’ve been doing this ten years.”
She didn’t look more than twenty to Alfred. He didn’t like that she patted his shoulder and called him “Papi.”
“I’ll see you tomorrow, Papi,” she said as she put the keys Ramona gave her in her shoulder bag.
He didn’t like that she didn’t ask if he needed help. When he made a move to get up from the sofa she sprung up and hoisted him as he mumbled “Give me a chance to try.” She made him sandwiches in the kitchen while he watched TV, and she brought her own food in plastic containers she washed before packing them back in her shoulder bag. He wanted her food: black bean salad fragrant with cumin; golden, deep-fried ham croquettes; sweet, glossy plantains. When she lifted the lids off the containers, the redolent garlic, pimentón and olive oil made his sandwiches smell like cat food, and he wanted to reach across.
On her last day, she turned off the TV after her telenovela was over. Alfred was on the sofa nearby, reading a score for a Satie Gymnopédie he had planned as an encore months ago. He missed the discipline and craftsmanship his profession demanded, the sense of accomplishment, the pride in his virtuosity. He remembered Dr. Singh, in a singular moment of humanity, explain when she discussed the MRI with him that the present day would be the best he would ever have, to live every moment. But he remained entangled within the strings of the piano, his identity shaped by the scores he had studied and brought to life. The grand had been silent now six weeks.
Esperanza had seen him reading scores every afternoon. “You play?” she gestured her chin at the grand.
Alfred looked up and nodded. His left hand held the score while his right fingers moved over phantom keys.
Esperanza tilted her head to the side, expectant. “I love piano music.”
When Alfred didn’t look up again she went to the shelves that held CD’s. “A lot of piano.” She pulled out one of the cases and studied the front. “Oh my god,” she said.
Alfred glowered at her, lips tight. He closed the score. She was holding his recording of Bach’s Well-Tempered Clavier, the source of the fugue in G minor he had been working on when his symptoms became undeniable. He was afraid of it now, as if even just hearing it would bring him another devastating catastrophe.
He tried to get up, and she rushed to him. This time her arms went around his chest in a tighter hold. It felt like an embrace to him, her breasts on him. He could smell her talcum powder, and he held his nose to her neck. It was a physical intimacy he hadn’t felt in a long time, and he felt a surge of blood and a swelling in his genitals. He had to stop himself from putting his hands on her buttocks and pulling her pelvis into his.
He shuffled to the piano, sat down, adjusted the bench. With each hand he played just one note, then another, a third. The sounds brought back to him the heaven he had known, and he remembered Dr. Singh’s words, which had seemed like platitudes at the time. He played the fugue, slurred, phrases cut off. He omitted embellishments, smited grace notes. He pummeled through the disaster to the end, and closed the lid over the keys.
Esperanza’s applause was frenetic, a machine gun of appreciation. Pathetic, Alfred thought, an audience of one, and an ignorant one at that. “Thank you,” he said. And suddenly he was exhausted. “Take me to bed. I need to rest.”
She lifted him, gave him her arm, and this time he took it. Her skin was covered in a hush of fine fawn down, and he let his fingers drink in the soothing softness. At the bedside she braced him with her formidable biceps to lower him, then swung his legs onto the bed.
Alfred looked at her round face, brown eyes too small, but with a glint. He raised the hand that was closer to her, not wanting to touch her, necessarily, but in gratitude for her listening, her admiration. He missed that so much, the contract between musician and listener. I’ll perform for you, and you give me your attention, your adulation. Gone. Just like he suspected Ramona would be at some point. Three days in California, and she had called only once, another door closing. Esperanza didn’t take his hand, but placed her own on his shoulder, something he had done once at a funeral with a bereaved spouse. He couldn’t even flinch.