Happiness--A Memoir

by Heather Harpham

  Often I had no idea what she was talking about, much less thinking; she had an ongoing inner life of quiet and powerful sympathies for various imaginary characters. But the bus we understood. She had a dream of chasing the cast of the Ice Capades show Nemo on Ice. She and her friends, she’d explained, would “jump on that bus and take it for our own. No grown-ups can come with us; just me and Eden and our Nemo friends are gonna have that bus.” Her idea of perfect happiness hinged on a world run by, and for, kids alone.

  Fair enough. Considering what adults did to her.

  As we passed Gabriel’s menacing trees, I prayed a wordless, half-faithless prayer: Let the same four people pass these trees from the opposite direction.

  At the hospital entrance we piled Gracie’s bags onto a cart. Gabriel wanted to ride on top. Having him with us added a layer of complication and unpredictability, but he deserved to see where his sister was going. We set him atop the bags: “I uppy!” he shouted, from the top of the luggage, at anyone and everyone, “I uppy!” The boy in bee boots, sending salutations to each passing soul in the lobby. And so began Gabe’s reign as a hospital celebrity.

  “Be careful, Gabey,” Gracie said. She was, at heart, a grandma, a mensch. She kept on chatting with Brian and me, exuding an air of merry anticipation. To her, this was more or less like checking into a hotel. She skipped along in front of us, past the lobby fountain with its glimmering layer of coins, each one an underwater wish.

  On the fifth floor we turned down the long corridor toward our unit, 5200. Before you can enter the transplant unit, you have to first pass through the scrub room, a large antechamber with a trough sink. This sobered us up. The room is designed for decontamination. To keep the children of 5200 safe from outside germs and viruses, every visitor completes the protocol of scrubbing arms up to the elbows with disinfectant soap, donning shoe covers, and wearing a protective gown.

  Gracie didn’t want to put on the shoe covers. Gabriel didn’t like the smell of the soap; he shrieked as Brian scrubbed him down.

  “This is important, sweethearts,” Brian said. “It keeps the kids here safe.”

  “They are not safe?” Gracie said.

  We faltered. The children on this unit were so fragile, any renegade germ or garden variety virus could fell them.

  “Washing keeps the germs out,” Brian said, “so the kids can stay healthy.”

  Gracie nodded, a hero accepting the mantle of responsibility, and pulled the stiff blue paper covers over her shoes.

  The unit was shaped like an L: two long corridors connected at the elbow by a nurses’ station. I looked in every room we passed. Each had a large window onto the hall, but all the shades were down.

  As we approached our room, an adjacent door opened and a young mother emerged, a pretty brunette. Her hair was done in a retro upflip, Marlo Thomas–esque. Her makeup was smooth, evenly applied, appropriately subtle under the harsh hospital light. I was in awe of her coping mechanism: under duress, look nice. She smiled at us with both warmth and distance. A don’t-talk-to me smile, a welcome-to-hell smile.

  Brian was bent down, listening to something Gracie was asking, but I smiled back. I wanted to stop her, to ask her everything, but she walked past us toward the communal kitchen holding an ominous plastic bag that looked like it held something wet and heavy at the bottom.

  Brian took my hand, squeezed, a gentle reprimand, Get your head here, now. Our room was nearly at the end of the hall, second to last. I took this as a good omen—end of the hall, out of the way. Don’t tempt fate. We stepped into our room, and Gracie immediately scrambled on top of the bed. She reached out for Gabe, who was standing beside the bed, with his arms up. He believed she could lift him. She believed it too. She might pull his arms out of the socket trying, but she would get the job done. Brian put his foot under Gabe’s butt and hoisted him upward onto the bed. Gabe said, “Yacie uppied me.” Matter-of-fact, not at all surprised by her powers.

  The room was a small, strange shape, maybe a trapezoid. I tried to remember my geometry. There was space enough for the hospital bed, a big chair that pulled out into a cot, and a wall-mounted TV. In one corner a tall, skinny window looked out on a single tree.

  “That better be a good tree,” I said.

  “What?” Brian was putting a few of Gracie’s pajamas in a drawer.

  “Nothing.”

  I was taking stock of all the daunting, gleaming, ominous, ever-present equipment. Monitors, IV stand, oxygen outlet built into the wall. And much more. This was a room designed to sustain life. Or, if necessary, restore it.

  A nurse had told us, “All the rooms are under negative pressure. The air flows out, exclusively. No germs can enter, so your daughter will be safe.” I certainly felt as if I was under negative pressure, whatever that might be. But I also felt supremely unreassured.

  We had signed all the papers put before us—describing, in cryptic terms, the many possible “negative outcomes” of transplant, up to and including the most negative outcome of all—disbelieving each page. We were at the beginning, when good things still felt possible.

  A line from Mike Tyson came back to me, something Brian said once: Everyone’s got a plan, until they get hit.

  “She’ll be OK,” Brian said.

  And I loved him for saying that, whether he knew it or not.

  40

  Our “primary nurse” was named Bobbie. “Hi you Gracie,” she said in a North Carolina drawl. “I’m the one you’re gonna ask for anything you want in this hospital. And I’m gonna help you.” Bobbie was delicately built, though tall and wiry. She had cat-eye glasses, a short bob with blunt bangs, which expressed an earnestness, playfulness, and readiness; the hairstyle equivalent of rolling up your sleeves. She wore a pink cardigan with pearl buttons over scrubs and an air of complete competence.

  Gracie watched Bobbie with interest. On principle, she disliked everyone in scrubs, but Bobbie made it hard. Under her prim presentation there was obvious power. She bopped around the room with a fluttery, restless energy. When she left I said to Brian, “She’s the one to stand next to in a street fight. Warrior-librarians are the best!”

  Eventually, we would learn that Bobbie worked with refugees all around the world, that she was married to an Irish doctor, that they had four sons together. We’d know she was someone who did not give ground when ground had to be held. We’d know that her oldest son was a gifted musician, and her youngest a natural comedian. But that first day we only knew that she made Gracie laugh.

  As soon as we were settled, Bobbie rolled a large IV pole into the room. “Okeydoke, Gracie, time to hook you up.” The pole held multiple pumps, programmed to dispense medications round the clock. Each med flowed through tubing that would be attached to one of Gracie’s three central-line catheters. Bobbie hooked them up, med by med. As she attached each tube to the catheter and screwed it in, she’d introduce the two ends to each other: “Mr. Red, meet Mr. White; you two are gonna be good friends.” Gracie laughed at this little skit, each time, and asked if she could attach them too. Bobbie said sure, as long as she cleaned her hands with alcohol wipes first. I knew Bobbie was guarding against bacteria. Bacteria in the blood is a bullet. You don’t want it near the heart.

  When Bobbie finished, Gracie and the IV pole were tethered together, inseparable.

  “How long will she be hooked up?” I asked.

  “Pretty much all the time,” Bobbie said, with an apologetic look. Nurses were so often the bearer of the bad news that docs neglected to mention.

  “But how will she get around?” I said, wishing I’d put it less starkly in front of Gracie. Bobbie motioned me out into the hall.

  “She likely won’t feel like getting out of bed much anyway, but for the days when she feels good, she can get unhooked for about an hour. Total.”

  As soon as she was hooked up, Gracie wanted down. “Ask Bobbie if I can get off from this!” she commanded, pointing at the pole. She had anointed Bobbie the ultimate authorit
y. Brian and I had been demoted to ancillary underlings. “Ask Bobbie!” Gracie said again. These were phrases that we’d come to hear dozens, maybe hundreds of times a day. “Ask Bobbie” and “Get unhooked.”

  Gracie’s IV pole was about six feet tall, made of steel, with a round tri-wheel base wide enough to stand on. The pole was her traveling companion, her straight man. All day, every day, he towered over her, silent, forbearing, doing his duty. And like anyone under the constant eye of a protector, she often wanted to give him the slip.

  My mom, who’d stayed for our admission day, had diversionary ideas. She pulled a bottle of nail polish out of her purse, glittery gold. It was the most cheerful thing in the room by miles.

  “Gracie,” she said, “would you please do my nails?”

  Gracie painted my mom’s nails carefully, slowly, with her full attention. If my mom had offered to do Gracie’s nails, it wouldn’t have worked, but to ask for Gracie’s help was perfect.

  When she got gold polish more on finger than nail, she said, “Sorry for that, Didi.”

  My mom kissed the crown of her head, “I don’t mind, sweet Gracie girl.”

  When she fell asleep, my mom said, “Go home, you two. Or go out to dinner. Pamper each other for a few hours; we’re fine here.” Brian and I looked at each other.

  “It’s OK. She’s gonna sleep for a long time,” Bobbie said, as if reading our minds. “The first day really takes it out of them.”

  And so we left. Only for a few hours. In our bedroom, getting out of my slacks felt heavenly. My dress-up-for-doctors habit (to emanate a little dignity, a little litigious power) was getting old quick. Hospital life is pretty much the reason sweats were invented. I got into pajamas, washed my face, brushed my teeth.

  I slid into bed beside Brian, who was looking at online menus of local places.

  “What would you like, of all the many foods of Durham?”

  “I’m not sure. What sounds good to you?”

  This was a game we sometimes played: What do you want? No, what do you want? A dance of deferring desires.

  “No, you,” he said.

  I gave him a blank stare. “Whatever sounds good to you.”

  I pictured Gracie tied to her pole, all kinds of odious drugs flowing into her body via the catheters. I had nothing left with which to make a decision.

  And I didn’t want to communicate with anyone, not even Brian. I wanted to stop picturing the moment Gabriel had dropped Brian’s glasses from the balcony, and we’d watched them fall, four stories down. I wanted an isolation tank. I wanted to bob in the blackness and silence of body-temperature water. Gravity suspended, I wanted to be a beautifully blank slate. To forget for an hour. To be breath and black, and black and breath; skin and bones, empty and alone.

  Skin and bones, empty and alone—I was turning into a country music song.

  “Any mind-obliterating drugs on those menus?”

  “Not at first glance, but I can keep looking.”

  I knew he meant it. Though we didn’t do drugs, never really had, if I asked him now to help me go numb, I was pretty sure Brian would. He’d be concerned, he’d ask if there wasn’t a better way of dealing with one’s anxieties, but he’d probably help me score. I felt a rush of affection for him. But I still didn’t want to talk. Or think.

  “Listen,” I said. “I know this makes no sense, but I want to go back to the hospital.”

  “We just left the hospital.”

  “I know.”

  “Sweetheart,” Brian said. “Pace yourself. The hardest parts are still ahead.”

  “I know,” I said again. But I wouldn’t relax until I climbed into bed beside Gracie. Even if this was a pointlessly melodramatic gesture, even if she was not in any immediate danger, and we were exhausted and hungry, I wanted to be there.

  “I’ll go back with you.”

  “That’s OK,” I said, as if I was letting him off the hook.

  In fact, he wanted to come, I could hear it in his voice. And he could come. Our Durham babysitter, Denise, was living with us for exactly this reason: to be home with Gabe when one, or both, of us needed to be at the hospital. Or, in Brian’s case, working in New York. So Gabe was covered; we could both return. But I wanted to be alone. I wanted to drive through a perfectly quiet North Carolina night, with the windows down, letting the snowy air pour through the car.

  In Gracie’s room my mom was in the sleeper chair. I climbed in beside Gracie. Her hair—her silky thin toddler hair that curled, gently, at the nape of her neck—smelled like plastic ponies. I breathed in the whole of her, the faint medical sourness, the high note of plastic, and beneath everything, my girl, earthy, ordinary.

  My mom stirred. “Why are you here?”

  “How’s she been?”

  “Fine, good.”

  “Did she eat?”

  “Mac and cheese. Did you guys eat?”

  “Not really.”

  “Sweetie…”

  “We were so tired, and food is … so foody.”

  “Does Brian also think food is too foody?”

  “I’m not sure.”

  “You know, if you want to talk about how things are, I will listen. Just listen, no opinions.”

  “We’re fine.”

  “Because it is totally natural to be stressed when you have a sick kid. Both you and Brian are going through something monumental.”

  “OK, Mom. I’m not one of your clients.” I’d been saying this to her, in more or less the same tone of annoyance, since I was ten.

  Then again, I was no longer ten. I didn’t want to hurt her feelings. “Sorry, I’m not up for talking.”

  My mom reached across the minuscule space from the chair to the bed and grabbed my wrist. “Gracie is going to be fine. And you’re my girl; I’m worried about you.”

  “Thanks.” There were tears in my voice. I felt a surge of relief to feel something, anything. At the same time, I felt as if I was betraying Brian. Here were actual feelings, rushing to the surface, but not with him.

  41

  The next day, Gracie’s first words were, “Can I get unhooked? Go ask Bobbie!”

  Brian was reading; Tolstoy open on his lap. He gave me a short, sympathetic smile. “You look like a person who slept.”

  “When did you get here?”

  “A while ago.”

  Brian kissed Gracie and me, both on the forehead, and went in search of Bobbie who we were pretty sure had the day off. We hadn’t yet told Gracie that Bobbie wasn’t on duty every day. When Brian returned, he punted on the Bobbie question.

  “Lovey,” he said, “you can get down and go for a walk, but you have to take this guy with you.” He gestured toward the pole.

  “He wants to stay inside my room,” Gracie said. “The hall is too cold for him.”

  “We could put a hat on him.”

  Gracie didn’t exactly smile, but she climbed down from the bed, on the same side as the pole, and gave him a pat, “He’s a tough guy, he doesn’t need a hat.” And with that, the pole was domesticated, named. Turned into her pet.

  She suited up for the hall: gown, mask, shoe covers. Out in the hall she was the only kid. Sixteen beds on the unit; one patient walking. Most of the others were farther along in their treatment and too sick to get up. Gracie said, “Mama, I wanna see who’s inside. Open their windows.” I explained that the shades were controlled from the inside, the people in each room had to choose to open them. “Why don’t they choose?” she said.

  In the room beside ours was a girl Gracie’s age, Mia. Her mom was the pretty brunette with the updo. We hadn’t yet met Mia, but Bobbie had given Gracie some details, which Gracie recited, like a commentator providing color, as we passed Mia’s room: Mia comes from California, Mia loves dogs, Mia has brown curly hair, Mia has a sister but no brother. The way she said, “no brother,” as though it were a terrible fate, touched me.

  Gracie walked past Mia’s door several times, hoping for a sighting. No luck. She’d given
up and seemed ready to climb back into bed, when an idea dawned on her: “I can ride him.” She pointed at Tough Guy.

  She planted her feet on his wheeled base, clutched the center pole, and commanded, “Run!” I pushed, tentatively. Brian stood behind her, ready to catch, fretting. “Faster,” she shouted, until I broke into a jog.

  “More faster!” We got several raised eyebrows, and some pursed lips at the nurses’ station, but sped up. It felt impossible to deny her any stumbled-upon happiness.

  At the end of the hall, a new thought occurred to her: self-volition. She dropped one foot and propelled Tough Guy forward with a quick thrust. Then she leapt off, as if to race him. I dashed after the two of them. The lines connecting girl to pole could pull taut, pull loose. If she moved too fast, the lines could dislodge from her chest. Catastrophe. Brian was right there. Ready if she needed him, but not interfering. Helping pace her. He placed a hand on her shoulder. “Sweetie,” he said. “Slow down. Mommy and Tough Guy have to keep up with you.”

  Gracie looked back with annoyance. “Then keep up.”

  Farther down the hall was an open door. A mother stood with her infant son against her chest in the doorway. IV lines and monitor cords ran from the bottom of his blanket back into their room, their pole. The mother had a quiet, serious aspect. She said nothing at first, but carefully watched Gracie ride Tough Guy. I paused to chat with her.

  She introduced herself, “I’m Ramya.” Her baby son, who’d had his transplant before we arrived, was Varun. “He’s doing very well,” she said in the elegant, elongated syllables of a British education. She’d grown up in India but emigrated to the United States with her husband years ago. Their home was in New Hampshire; like us they’d relocated for the transplant. Varun had been born with a lethal autoimmune disease for which transplant was the only cure.

  Varun stirred on Ramya’s shoulder and looked at me, evaluating a new face. His eyes were outsized and luminous. Large, brown eyes that met mine in a steady line of attention. He couldn’t yet talk, but it felt as if we were conversing. “Varun,” I said. “Hi.”