Happiness--A Memoir

by Heather Harpham

  By night I picture scenarios in which I might be able to save her. She’s been taken, for reasons not made clear. The kidnapper’s demands are bizarre: I must walk without stopping, in the heat, in the snow, carrying weight in the form of grocery bags, metal bars, sacks of sand. If I stop, even hesitate, the kidnapper will harm her or refuse to return her. I must keep walking. I will keep walking. How long can I walk? Three days, four? I think I could walk indefinitely. Without food or water, or in extreme heat, extreme cold, eventually I would drop. But I don’t see that happening. I see myself lifting foot after foot. I worship a false god, the idol of parental love.

  DAY 18

  The ultrasound woman returns each morning. She’s gentle, she’s quiet. Gracie sleeps through it. Every morning I am standing on the edge of a very high cliff. Prepared for the sick feeling of dirt sliding, the rocks soft, then loose, then gone. But every morning the ultrasound woman repeats her phrase, “Your doctor will deliver the results as soon as possible.” She’s said this for five days in a row. Each day when the doctor arrives in the afternoon, he confirms that the sonogram shows no reversal of flow. Two days remain in our window of risk. Today he will say the same.

  DAY 19

  Brian comes in while we are asleep. He has brought me a stack of trashy magazines and a bar of dark chocolate. He’s brought nothing for Gracie because she isn’t able to enjoy anything. I read my magazines. He reads E. L. Doctorow’s new novel. Gracie breathes in, breathes out, breathes in. Beautiful sound. I’m not sure if I’m breathing, or if Brian is. How long since we drew a deep breath, eight days? Nine? We don’t talk. I’m aware that, sometime over the last weeks, my feelings for Brian have radically rearranged.

  Glancing at him used to bring me joy. Or a sense of well-being. Now, watching him turn pages, I feel nothing. He’s the same man. Same long, studious face, which can break into an immense smile at any invitation. But Brian no longer looks entirely real to me. He cannot affect the outcome of Gracie’s sonograms. He cannot prescribe lifesaving medicine. He cannot ensure she lives; he doesn’t have that power. So he can’t help me. He’s one of the nonessentials, receding, half ghosted.

  He looks up and catches my eyes. I look back down at my magazine, afraid he’ll see what I’m thinking. Afraid he already has.

  Later in the day, Dr. P comes to see us.

  “So her mortality risk is over?” Brian asks.

  Dr. P looks at us carefully. “Her risk of mortality from VOD specifically is over. As you know, transplant is a dangerous process. She still needs to engraft, and until she engrafts she’s vulnerable to infection or virus.”

  I block out the second half of the sentence and focus on the first. “Can you repeat what you said about VOD, please.”

  “We can say for certain that her mild case of VOD failed to progress.” I love this phrase failed to progress.

  I feel light. Like when you force your arms against a door jamb, and when you step out, they float upward, of their own accord, weightless.

  Dr. P is handsome. Extremely handsome. How have I not noticed before? Dark, wide-set eyes, an aquiline nose. I actually squeeze his arm a little. Dr. P, kind but reserved, recoils toward the door. “I’m very glad to give you good news,” he says, and steps out.

  I turn to Brian, who is also suddenly, acutely handsome. I want to make a joke, “Where have you been all my life?” As if I hadn’t noticed him until now. But think better of it. Too close to home. I put my arms around him; he puts his arms around me. “Her VOD failed to progress,” I say. “I’m so happy and proud to be the parent of a failure.”

  It feels as if everything that matters has already happened: she’s walked to the edge of the abyss, looked down, peered over her shoulder at us, as if to ask, “Should I stay or go?” And, beautifully, mercifully, chosen to stay.

  Brian and I walk around wearing the insipid, blissed-out smiles of recent religious converts. Even though we know nothing is settled. Even though the abyss still surrounds her bed, and she’s still a patient on 5200, a transplant unit, with the ricketiest of immune systems, still between bone marrows, unengrafted, unable to produce sufficient red cells on her own. Even though she’s blank and bored, and awash in the malaise of living in a box, her liver works. Her liver works!

  DAY 20

  Time shears in half: before and after. After is better and faster; the days lift their heels out of the sticky tar of anxiety and fear and speed past us in flip-flops, spewing sand. We’re allowed to be happy again or to relax, space out. Singular moments leap into focus.

  Gabriel and Brian are at home, where I can finally spend a night. Gabriel pats the bed beside him and says, “Sleep, Mommy” and “Sleep, Daddy.” He wants our company, even when unconscious. We hope to lie down just for a minute, but he entangles a hand in my hair, pegs a foot on Brian’s arm; two sleepy-time paperweights to make sure we stay.

  Brian and I both swear that, just before falling sleep, Gabriel mumbles “bone marrow transplant.” It is the end of a long day, and he is babbling a lot of stuff. We ask him to repeat it, and he does. He isn’t enunciating with perfect elocution, but he says the same thing several times, and the thing he says sounds like bone marrow transplant. He’s two years old, almost.

  When he’s asleep I say, “Your cells are doing a great job.” I bend to kiss his feet. “They are helping Gracie.” This idea might be as arbitrary, as anthropomorphizing, as trees who don’t like him, but I believe it’s true.

  I keep wishing Gracie could see him. He would be a Tasmanian devil in a jar, in her tiny room, and he is too germy for the unit, but he would cheer her up. Once or twice they talk on the phone.

  “Hi, Gabriel.”

  “Yacie!”

  “Hi, Gabriel.”

  “You sick?”

  DAY 24

  Engraftment is our new everything.

  “She needs to engraft,” Dr. K says, “so we don’t have to keep dumping blood in her. We need to see that the marrow works, that Gabriel’s cells can do their job.”

  “Do your job,” I say as she sleeps, speaking to the soles of her feet, to the palms of her hands, to the cells of her interior spaces.

  Engraftment is defined as three consecutive days of an ANC (white cell) count above 500. If the body is making that many white cells, theory has it, then the stem cells have transformed into bone marrow cells. Her ANC count bobs erratically; it hits 500 then dips below, hits it again and dips once more. Our spirits are tied to this value; our happiness rises and falls in direct correlation.

  DAY 25

  It’s the coldest day we’ve had in Durham yet when Gracie, at last, engrafts. Outside our window, a thin layer of ice coats every surface. Inside Gracie’s bones, Gabriel’s stem cells fuse to the walls, divide and multiply, replicating his healthy matrix in their new ecosystem.

  I take a walk after we get the news. The gardens of Duke are crystallized beneath a suspended veil of white branches; lace shot with sunlight. I envision her engraftment like this, as a stunning architecturally intelligent design writ in miniature and encased inside her. I walk and pray, let it work, let it work, let it work.

  When I get back to the room, my face is cold and red.

  “Poor Mama,” Gracie says. “I will warm you up!” She presses her cheek against mine. She’s happy to share whatever she’s got, even body warmth. I can feel her heat, her inner engine. I hug her back, too tight. She pulls away. “Look what I learned to do while you were out!” She motors the head of her bed all the way up and the foot of the bed all the way up, to make the U shape. She has already learned this trick and shown me, but if it feels new to her, I rejoice in the discovery. She climbs to the top of the head of the bed and flings herself off, into the valley, like a cliff diver. Brian and I stand and applaud. Inflationary approval; we can’t help ourselves.

  Later Brian says, “It seems strange to say you admire a child who’s three years old, but I do.”

  I know exactly what he means. She finds the speck of gol
d amid all this dross.

  DAYS 30–33

  One morning I realize her belly has lost its distended, malnourished look. Even her peeled lips are almost normal. She looks more like herself. She is still bald but in a delicate, lovely way. The only physical marker now of what she’s been through are her nails, which are rippled with pale crescent rims halfway up, where the growing cells were interrupted by the chemo. They look like stumps of old-growth trees that show the year of fire.

  Her appetite returns.

  The first thing she asks to eat is a Luna Bar, then Doritos. I think we should push for some nutrition.

  Brian says, “Are you crazy? Give her what she wants. Eating is life affirming.”

  There are, anyway, restrictions—she’s on a neutropenic diet. She can’t be exposed to any form of bacteria or fungus. No eating things that can harbor a living organism. No raw fruits or vegetables. No feta cheese, her favorite. No blue cheese. Basically, nothing healthy. She either doesn’t care about these new rules or pretends not to.

  She says, “It’s OK they won’t let me have blue cheese dressing for my croutons. It’s OK I can’t have cream cheese on my bagel.” It strikes me as a mantra of self-consolation. I think what she means is: I’m so sad I can’t have the things I want that I won’t want them.

  Or maybe her sympathies just don’t revolve around herself. A day or so later, as she’s about to eat a bare cracker, she whispers to it, “I’m sorry I can’t eat your friend feta.”

  * * *

  Soon after Gracie can eat again, Cassie comes to visit. At the apartment she cooks for us, veggie soup for Brian, miso salmon for me, mac and cheese for Gabe; she vacuums and folds our clothes. At the hospital she makes Gracie laugh by turning a pair of chopsticks into battling brothers. She creates a fierce character, Edith the Avenging Cook. Edith is abrupt; she orders people around; she shouts every sentence. She threatens bodily harm if you don’t do her bidding. “You don’t like my soup?” Edith tells Gracie, “Fine. I will cut off your favorite finger. Which one is your favorite? Show me!” Gracie, sick child, coddled, catered to, and pitied, is thrilled by Edith’s intensity, her bullying. “This one,” she says, and holds up her left thumb.

  By the time Cassie leaves, Gracie is revived. Gracie asks, “Where’s Auntie Cassie?” When I tell her Cass had to fly on a plane back to New York, she throws her hands into the air. “Oh no!” she says, as if Cassie has suffered a calamity. Does she think Cassie was coerced onto the plane? I often forget how little she is, how literal. I’m surprised and happy that she can track the comings and goings of other people again; she can notice, she can care.

  She is coming back to life in stages. Look! Here’s my sense of humor, my food preferences, my powers of empathy, of gossip, of concern. Her world is dilating. It now includes Cassie. And Edith. Her imagination is reinflating.

  DAY 34

  We wake up to a flyer in the kitchen: a simple memorial service will be held for the four children who’ve died on the ward over the last eight weeks.

  Ramya and I sit next to each other during the service. Varun, who cannot understand what the chaplain is saying, sits on Ramya’s lap, looking around the room with interest. He’s well enough to be out a bit. We are in the common playroom known as “the Connection.” Gracie is in our room, probably missing me, watching a video. I feel guilty, but I stay. I want to be here with people who knew the children who are gone.

  Varun gurgles. He’s also growing stronger each day. He’ll go home soon. He is grasping at the gold bangles on Ramya’s wrist, clinking them together and singing out elongated, airy vowels. Part of what makes his eyes so big, I notice, are his lashes; they’ve begun to grow back long and thick. A good sign. I want to touch his cheek, but that’s not done. We don’t touch each other’s children. Transmission of infection is everyone’s greatest fear.

  As the chaplain says her ending prayer, “And reside beside Him, in His house,” a computerized voice bleats out a fire drill, “Code one five seven one,” punctuated with piercing beeps. Ramya and I exchange a look. Life on the unit, typical mix of the holy and the institutional. But I know she feels like I do, grateful for this service, grateful for the chance to sit together and grieve.

  They played in this room, each of the four children. They touched the crayons in that box by the door. They handled the videos. They took out the games. We are surrounded by things they picked up and put down, but with no way to call them back.

  I drive home from the hospital crying. I’m not sure if I’m crying with grief for the four children who died beside us, whom we did not know. Or with relief that my child has lived. Or with lingering fear. I wipe my face and turn up the music and try to get ready to mother Gabe.

  At home I try to strap Gabe into the kid seat on our blue Schwinn. He arches his back and yells, “Oolie ba ba!” His latest creed.

  “Gabey, let me put you in!”

  “I do it!”

  If you try to help him do anything, say, put his bee boots on, he’s indignant and demands to do it himself. If he can’t do it, he’s outraged that you have let him struggle. Being two years old is an ongoing schizophrenia; the wild vacillations between I can and I can’t.

  Finally, he’s in. We coast downhill in the cooling air of early evening. At the edge of the forest we pass through the fertile scent of wet upturned earth. “Yummy air,” Gabe calls it. I pedal like mad to make it back up our little hill. “Again!” Gabriel cries every time we crest the hill. I sing to him, snippets of Joni Mitchell, snippets of Van Morrison. But mostly we ride in silence, listening to the trees sigh out at the end of the day, to the multiple squawks and squeaks and chirps and khaas that are the lingua franca of the lush woods around our complex.

  Gabe loves this. I love this.

  A flock of wild geese flies in a ragged V along the horizon line, gray specks against an orange sky, calling to each other. This way, this way, this way, follow me.

  “Gabe, do you see the geese?”

  “Geese mine,” Gabe says.

  “Gabey, next week is your birthday. Are you ready to be two?”

  Gabe says, “Go faster!”

  Four children in eight weeks. Three boys and a girl. Three of these children died before we arrived, one after. Sam, the cowboy.

  It feels wrong to be happy, to be riding through dusk with Gabe, in his bumblebee boots, while children who once lived on our unit cannot see the sky, the geese, cannot smell the wet ground permeating the air. But I keep pedaling.

  The art therapist, Mary Margaret, arrived at the service with art made by two of the boys, Sam and Ramone. Sam’s piece was a collage of shredded magazine pages, strips woven together, in the blue hues of the ocean, which his mother loved. Ramone’s was a velvet stencil of a large cross, intricately and delicately hand-colored, like stained glass, made for his deeply religious grandmother who sat beside his bed for eleven months. Small marks of self-expression that pulsed with vibrancy, with their maker’s particular sensibilities. Intention remains even when the children are gone.

  There was a collective hope at the service that the children were in heaven. Riding ponies, playing bingo, exploring the sea. But I don’t think heaven is so much like earth. If heaven exists, I hope it is far beyond what we conjure with our gravity-soaked imaginations.

  To my mind, it is OK if there is no heaven. It is miraculous enough that Sam and Ramone lived. They were here, on earth, as themselves. The spontaneous eruption of an individual consciousness out of nothingness. I know this is too easy for me to say—I have one child healing, and the other murmuring self-soothing songs on the back of a blue bike. It is too easy. But still, it’s what I hold against my chest. They died, but, before that, they lived.

  DAY 35

  Gracie is allowed, for the first time, to take a walk off the unit. She suits up in the yellow gown, the mask, the shoe covers. When we reach the imposing electric double-doors that have held her in the ultrasterile environment of 5200 for almost two months, she hesit
ates. She peers through the door’s window to the hall beyond and asks, “Am I safe there?”

  Stepping outside the unit feels as alien, as adulterous, as a moon walk. When she takes off down the hall, her gait is lopsided, a bow-legged half waddle with the toes of her left foot turned in. The result of lying in bed for weeks. She stops at a handrail and tries to pull her feet up, to hang upside down, something she did routinely before being admitted. She doesn’t have the strength; her feet dangle a few inches off the ground.

  I say, “It might take a while for your body to remember how to run and jump and play.”

  “It’s OK,” she says, “my body didn’t forget how to run.” She limps past me, saying, very matter-of-fact, “You know why my ankles isn’t working right? Because I was in the bed so much.”

  She is overcome with happiness at being in a new corridor, even if it’s the same beige hospital corridor with the same generic seaside art as ours. For me, the thrill of watching her “run” is cut with the knowledge that she could be reduced to a ventilator by an unseen germ coughed out by any well-meaning passerby. Or a virus on a handrail. I run in front of her with a tub of antibacterial wipes, imploring her not to touch anything until I have wiped it down. She is a good sport about this; she points to whatever she wants to touch, so that I can wipe it first, saying, “Clean, please.”

  DAY 38

  Gabriel turns two.

  My dad and his wife fly out for the party. They buy dinner for eight at Chai’s Noodle Bar and Bistro and bring it to the hospital. Gabriel refers to them as a single entity, Baba-Nana. “Baba-Nana come!” he says to us. On this trip my dad—renowned for being domestically inept (he used to keep a single, perpetually unwashed pot on the back of the stove, and whenever it got low, he’d simply add a new can of food)—does all our laundry, folds my shirts with care, hangs Brian’s dress slacks.