Never Tell Our Business to Strangers

by Jennifer Mascia

  A few days after they left, Sloan-Kettering informed us that my father wasn’t rehabilitating as fast as they liked, and since he wasn’t ready for hospice they recommended a rehab facility in Staten Island, after which he was welcome to return for brain radiation. Two months after he was brought to Sloan for what was supposed to be an overnight stay, I watched from Sixty-seventh Street as he was loaded into an ambulance and taken to a rehabilitation center not far from my parents’ apartment. I monitored his progress by phone, planning to visit him over the weekend, but at 11:30 on Friday night, my mother called.

  “Jenny, when I went in to see him today, he was, like, in a trance,” she said.

  “Was he dehydrated?” I asked, by now somewhat versed in endstage cancer.

  “I don’t know,” she said. “How can you tell?”

  “How can you tell?” I asked her rhetorically. “Mom, you know this. I know you know this.”

  “I don’t,” she said, her voice threatening to break.

  “What color was the urine in his output bag?”

  “Um …”

  “Was it orange, Ma?” I asked, worried I was losing her, too.

  “It was very dark. It was very, very dark, like you said, almost orange,” she said, coming back.

  “I’m getting in a cab and coming over,” I said, not caring that it would cost fifty bucks. We managed a few hours of sleep before rising at dawn.

  “Let’s go,” I said as soon as I opened my eyes, and my mother hopped into the car without even a cup of coffee—a first for her.

  “I’m sorry, it’s not visiting hours,” a nurse called after us as we barged through the door.

  “Fuck visiting hours,” I mumbled.

  “Jenny!” my mom scolded, but followed me down the hall toward his room. I glanced at the patients in the hallway and noticed that each one ranged from partial awareness to catatonia; for a moment I thought I’d stepped onto the set of Awakenings. We came to my father’s room; he was despondent and his lips were drier than bone. I checked his urine bag and extended it toward my mother: orange juice. His eyelids hovered somewhere between Tommy Chong and Kurt Cobain. I knelt down next to him.

  “Daddy, are you ready to get out of here?” I asked.

  “Yes,” he said in a squeaky whisper, and began to cry. “I been meaning to tell yous all week, but I hate it here.”

  INSTEAD OF BULKING him up, his stay at the rehab center had set my father back to the point where brain radiation wasn’t possible. No one had to tell us this, nor did they try to sell us on hospice; he still wasn’t sick enough for that. But my mother had an idea: She was going to get home care. “I can’t take care of him myself,” she said, and enlisted the Visiting Nurse Service. She told them she needed a hospital bed and 24-hour aides to care for my father, “until he’s strong enough for another clinical trial,” even though we knew he’d never get there.

  “Mrs. Mascia,” one of the nurses at Sloan said, “Medicaid doesn’t cover round-the-clock care. Maybe eight hours a day, but no more than that.”

  “Wanna bet?” she asked, and a few phone calls later we were assigned two nurses to oversee my father’s care in twelve-hour shifts. “You’re coming home, Johnny,” she whispered in his ear; he smiled.

  I wasn’t there when his hospital bed was installed in the living room at Merle Place, and when I finally laid eyes upon it a week later, the horror of the scene was eclipsed by another tragedy.

  “Jenny,” my mother whispered over the phone one night.

  “What is it, Ma? Is Daddy okay?”

  “Uncle Joey died,” she said, and out of her mouth came a sound I’d never heard—whispered, suppressed tears, punctuated with tiny coughs. It sounded like someone being strangled in a library.

  “What? Oh, Ma, what happened?” My parents and Joey had driven to chemo together for the better part of 2000, indulging in a little gallows humor along the way. They’d shared the same disease, and now they would share the same death.

  “Emma found him in the hallway, collapsed and writhing,” she said quietly. “She called 911 but it was too late. She thinks it was a heart attack. A massive, massive heart attack. It was just so unexpected,” she said, weeping softly.

  “Oh, Mommy,” I said. “How did Daddy take it?”

  “I didn’t tell Daddy,” she said.

  “Well, you are, aren’t you?”

  “Jenny, how can I?” she asked. “To do this too him now—you’ve seen him, he’s out of it. Emma said not to tell him. In his state he might not even understand.” My father had crossed a line and I hadn’t even caught it. I wanted to reach back and find the exact moment when my father had stopped being my father and instead become his shadow.

  “I guess you’re right,” I said. Now I knew why she was whispering.

  “Please come to the funeral with me, Jenny,” she said. “I don’t want to go alone. It’s Saturday morning. Please.”

  “Of course.”

  “Because I know his family will be there and I—”

  “I’ll go, I promise.”

  “Jenny, don’t let me down. Please.”

  “Mom, listen—could this happen to Daddy?” I asked. “Because if it was so sudden, I mean—I want to be there, I don’t want to miss … it.” I tried to say it as gently as possible, but a painless death was now our best-case scenario.

  “Don’t know,” she said numbly. “What was really awful was when the paramedics came and they restarted his heart and put him on a tube, and Emma tried to stop them, screaming, ‘He has a DNR! Don’t you dare stick that tube down his throat!’ But they did anyway, and it was only after he got to the hospital and they called to check with Sloan that they removed it.”

  “Oh, god,” I said. A DNR, or Do Not Resuscitate order is a medical directive that prohibits taking extreme measures to prolong life. My father had signed one, too.

  “Joey didn’t want to be kept alive by a machine,” she said. “Emma was adamant that his wishes were carried out. Oh, I feel so bad for them, Jenny.”

  “So do I,” I said. “I feel bad for all of us.”

  I took the express bus to Merle Place on Saturday morning to find my father lying in a hospital bed in the middle of the living room and a young black man sitting on the couch next to him. A commode and a wheelchair were parked nearby, as was a walker, in case my father felt inspired to take a few steps. The setup made me hate the apartment even more than I already did.

  “You must be Jennifer,” the young man said, rising and offering me his hand. “I’m Yaw.” He pronounced it “Yow.”

  “Hi,” I said. “You’re taking care of my father?”

  “Yes,” he said. “Such a good man. So funny.”

  I nodded. “So funny.” Even when I was a teenager and his jokes stopped being funny, he was still funny. My mother emerged from her bedroom wearing black. I considered my own black shirt and walked over to my father’s bed. “Well, Mommy and I are going to, uh, have breakfast now,” I said. My mother hooked her arm in mine.

  “Yeah, we’re going to eat a little something,” she said. I was worried he’d catch on because I rarely rose before noon. But in a way I wanted him to know. I wanted him to keep him in this world, keep him with us. But his body had other ideas.

  “Have fun, girls,” he said. When the church service was over my mother took my hand and led me into the sunshine, where I cried tears of futility; I knew my father was next.

  Despite Emma’s considerable pain, she brought her daughter Linda over to the apartment on April 10, my father’s sixty-fourth birthday. “Hiya, Johnny,” Emma said, smiling bravely. My mother had helped him onto the couch for the occasion and dressed him in a gray short-sleeved button-down. He wore a warm smile when he wasn’t staring off into space, and I couldn’t tell whether his disorientation was caused by the fentanyl patch stuck to his back, the liquid morphine my mother dropped into his mouth every hour, or the brain cancer.

  “Hey, Emma!” he said, his eyes slowly finding her
face. My mother told me that Emma and Linda had changed their black clothes in the stairwell so as not to arouse my father’s suspicion. But as they were leaving they very nearly broke down at my father’s final words.

  “Say hi to Joey,” he said, waving. Emma froze her smile in place and nodded ever so slightly.

  “I will, I will,” she said. “Goodbye, Johnny.”

  After they left, Yaw helped my father navigate the living room with the help of the walker. Inch by delicate inch he staked his claim on the green carpet, chugging into his bedroom and back. “Look at you, Daddy!” I said, hopeful. He was dressed and upright; it was almost like having my old father back. He nodded and paused, drawing a deep breath so he could speak.

  “I just want to get well,” he said.

  He would never walk again.

  WE DIDN’T REALLY become close with Steven, the overnight nurse, because we spent most of our time sleeping when he was on call—as did he—but my mother and I quickly warmed to Yaw, who spent most of his time writing letters to his girlfriend in Ghana. He was a Christian, he said, and believed that the spirit lived on after death.

  “Really?” I asked, wanting so much to believe that my father wouldn’t be gone forever.

  “Of course,” he said. “He believes it, too.” He tilted his head toward my sleeping father.

  One afternoon my mother moved my father to the couch and gave him a haircut. Chemo had been kind to his follicles, leaving him just enough hair to comb over into his signature gray shell. When she was done snipping she held up her mirrored vanity tray so he could check her work. He stared at it for a while before looking at my mother and shrugging.

  “Go ahead, Johnny,” she said, nodding and smiling. “Look.” Once again he looked at the mirror, but not into it. I shot my mother a look, and she took the mirror and put it back in her bedroom. I followed.

  “Mom, why—”

  “I don’t think he can see,” she said flatly.

  “No,” I said, disbelieving.

  “Yes,” she said. “Jenny, I don’t know if I can take much more.” Even though we had nurses, it was my mother who wiped his backside after he sat on the commode; she was the one chugging the choo-choo train of applesauce into his mouth and holding the straw up to his lips so he could sip some water. The one time I tried to administer his morphine drops he refused. “Ask your mother first,” he wheezed, even though it was her orders I was following. Around me, my father acted much less aware than when my mother would walk into the room; her presence made him focus. He was tied to her now, and because of this she had her hands full.

  “Mommy, please, we can’t put him into a home,” I begged. The thought of him being dumped in someone else’s lap, like we didn’t care about him—it haunted me. “He needs to be with us, Mommy, please. I’m here, I’ll help.”

  “But you saw him, he only takes orders from me. It’s my heart I’m worried about, Jenny,” she said. “The physical and emotional strain may be too much. If we knew how much longer he had I’d take him up to Calvary in the Bronx. It’s an incredible hospice—that’s where Vinny went.”

  “You heard what the nurses at Sloan said,” I reminded her. “You need to be three to six weeks away from dying to be admitted to hospice. Who knows where he’s at?” Since we didn’t know, my mother brought in someone who could tell us. Her wealthy aunt Adele, who lived on Fifth Avenue and had come to see my father once at Sloan, sat on the board of Mount Sinai and called in a favor. That favor was Diane Meier.

  Judging from her slim, spritelike physique and casual attire of sweatshirt and jeans, you’d never be able to tell that Diane, a geriatrician, was one of the leading palliative care experts in the field, frequently quoted in The New York Times. Eight years later, she would go on to win a MacArthur genius grant for her pioneering work in the field of palliative medicine, but on this night, she was just an overworked physician who had driven all the way to Staten Island from East Harlem after a long day at the hospital to examine my father and determine how far he was from the end. “Hi, there,” she said to him quietly, stooping slightly to meet his eyes as he lay in bed. After my mother and I stood behind them for a few minutes, waiting, she looked up and said, “Is there somewhere we can talk?” We led her to the back bedroom—the one I’d actually cleaned when I moved out—and the three of us sat Indian-style on the carpet.

  “I’d say he’s about three to four weeks away,” she said. My eyes darted to my mother, and I expected her to cry, but she didn’t break, just nodded grimly. “Would you like to know exactly what will happen?” Dr. Meier asked us, and I nodded.

  “Please,” I said. She explained how my father’s sleep would get deeper and deeper, and last longer than we were used to. “Until one day he’ll just keep sleeping,” she said. “He’ll enter a coma, and soon the death rattle will begin.”

  “That sounds awful,” my mother said.

  “It does, literally, sound awful,” she said, explaining how we use a number of muscles to swallow all the saliva and mucus that accumulates in our mouths, and when we’re weakened by cancer we can’t control those muscles anymore but the mucus still accumulates, and when breath travels over it, it becomes audible. “It can go on for weeks sometimes,” she said. “When you hear that, you will know he is close.” My mother and I held each other’s eyes for a moment; we still had this to look forward to? “And then he’ll take long, deep breaths,” Dr. Meier continued, “and the spaces between each breath will get longer, too—so long, in fact, that you might think he has passed, but then, just like that, he’ll breathe again. And this may carry on for a few hours, until he’ll breathe and not breathe out.”

  We sat there quietly as the late spring wind rustled the Venetian blinds.

  “Dr. Meier, do you believe that there’s life after this?” I asked.

  “Oh, I do,” she said. “In fact, I believe that everyone has a spirit that leaves the body during death.”

  I smiled. “Good. If you believe it, I feel better,” I said, though it didn’t make swallowing this information any easier.

  “Dr. Meier,” my mother said, “I’ll tell you the truth, with all of this, I’m concerned about my heart. I’m not sure if my aunt Adele told you, but I had a heart attack three years ago and I’m a little worried that the stress of all this will aggravate my heart condition.”

  “Are you on nitroglycerin?” Dr. Meier asked.

  “No, but I’ve heard of it.”

  “Ask your cardiologist to call in a prescription for nitro. It strengthens the heart muscle, and when you feel any tightness in your chest just place one under your tongue and let it dissolve.”

  “Thank you so much, Dr. Meier,” my mother said. “For everything. I can’t believe you came all this way.”

  Dr. Meier considered me and my mother for a moment. “John is a very lucky man,” she said. “There is a lot of love in this house. The three of you are very connected, and it’s apparent to anyone who walks in. Eleanor, you’re doing a brave thing by not taking him to hospice, and it’s a decision you made out of love. But if this becomes too much for you, it does not mean you have failed him. This is incredibly difficult, even for medical professionals. If you change your mind, do not hesitate to call me, and we will have a bed set up for him at Sinai.”

  My mother nodded, tears flooding her eyes. “Thank you, Dr. Meier.”

  “Now, I would recommend you do something, and it is going to be very difficult, but it’s necessary, and many people never get the chance. You should tell him how you feel about him very soon. If you don’t, you might regret it.”

  “Oh, my god,” I said. “How am I going to do that?” I looked down at the carpet. Eulogize him to his face?

  “Yes,” Dr. Meier said, addressing me. “You must tell him how you feel about him.” My mother nodded.

  “She’s right, Jenny,” she said. “Thank you again, Dr. Meier. Really, I can’t think of another doctor who would do something like this.”

  “Oh, it�
�s nothing, and let me give you my number,” she said, scribbling on a piece of paper. On her way out she stopped at my father’s bed and leaned in and grabbed his hand. “You have a wife and daughter who love you very much, Mr. Mascia,” she said. “I wish you good luck.”

  “Thank you,” my father politely whispered, but as soon as she left he added, “I don’t like her, El.” He spoke almost exclusively to my mother now.

  “Why not, Daddy?” I asked, but my mother shushed me. She led me into her bedroom and shut the door. “What?” I asked her.

  “He doesn’t like her because he knows what she’s doing here,” my mother explained. “Your father is very smart. Even now. Well, you heard her, Jenny. We’ve got to do this.”

  My face began to crumple but my mother took my chin in her hands. “Hey,” she said. “We can do this.” We stepped out into the living room and my mother asked Yaw to move my father to the couch so we could sit next to him. I sat on his left side and my mother on his right. I didn’t want him to know that I was spilling my guts because he was dying, because then he’d have no choice but to face his imminent passing. I didn’t want to make it worse for him.

  “Um, Daddy,” I said, whimpering slightly. “Well, I love you guys,” I began. “Dad, you’re, like, my hero,” I said, thinking about how he changed his life for us, how he gave up the thrills and the riches of the criminal sphere to paint buildings and clean carpets. “I wish—if I could—I wish I could take your place,” I stammered. “If it was possible, I would take your place.” I meant it. He lifted one of his bony arms and wrapped it around my shoulders without shifting his gaze from the floor.

  “No, baby, no,” he said. “You have your whole life to live.”

  “She loves you so much, Johnny,” my mother said, nuzzling up to his other side. “I love you so much, Johnny.”

  “I love yous too,” he said. “My girls.”

  I WAS STILL TIED to the city by my final term papers, so after scenes like that one I had to drag myself onto the subway and blend in with a sea of faces registering their quotidian concerns while death hovered nearby, waiting.