A Memoir

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“[An] often beautiful jewel of a book . . . Black’s power as a writer means she can take us with her to places that normally our minds would refuse to go.”—The New York Times Book Review (Editors’ Choice)

From the New York Times bestselling author of The Still Point of the Turning World comes an incisive memoir about how she came to question and redefine the concept of resilience after the trauma of her first child’s death.

“Congratulations on the resurrection of your life,” a colleague wrote to Emily Rapp Black when she announced the birth of her second child. The line made Rapp Black pause. Her first child, a boy named Ronan, had died from Tay-Sachs disease before he turned three years old, an experience she wrote about in her second book, The Still Point of the Turning World. Since that time, her life had changed utterly: She left the marriage that fractured under the terrible weight of her son’s illness, got remarried to a man who she fell in love with while her son was dying, had a flourishing career, and gave birth to a healthy baby girl. But she rejected the idea that she was leaving her old life behind—that she had, in the manner of the mythical phoenix, risen from the ashes and been reborn into a new story, when she still carried so much of her old story with her. More to the point, she wanted to carry it with her. Everyone she met told her she was resilient, strong, courageous in ways they didn’t think they could be. But what did those words mean, really?

This book is an attempt to unpack the various notions of resilience that we carry as a culture. Drawing on contemporary psychology, neurology, etymology, literature, art, and self-help, Emily Rapp Black shows how we need a more complex understanding of this concept when applied to stories of loss and healing and overcoming the odds, knowing that we may be asked to rebuild and reimagine our lives at any moment, and often when we least expect it. Interwoven with lyrical, unforgettable personal vignettes from her life as a mother, wife, daughter, friend, and teacher, Rapp Black creates a stunning tapestry that is full of wisdom and insight.

Under the Cover

An excerpt from Sanctuary

Chapter One

This Particular Fire

When a human is asked about a particular fire,

she comes close:

then it is too hot,

so she turns her face—­

and that’s when the forest of her bearable life appears,

always on the other side of the fire.

Katie Ford, “The Fire”

My three-­year-­old daughter, Charlie, screams for twenty uninterrupted minutes after I break her graham cracker at snack time. She asks instead for white rice, and it must be “ice cold,” but the ice cubes used to chill it (a process she supervises) can no longer be present or even in view at the time of delivery in the bowl, which must be pink, and which she must select herself from the drawer where I keep her collection of plastic dishes. “I do it!” she insists, a statement she repeats countless times a day, often stomping a tiny foot and crossing her arms, like a parody of toddler behavior, only she is quite serious. I remind myself she can do it; let her do it. This, the teachers at her Montessori school have assured me, is the best way to foster independence, that essential building block of human development. “Development”: a word that once made me hollow with sadness.

My experience caring for Ronan was so different, so quiet, all of the activity internal: the pain of watching him worsen and fade; the constant, wrenching speculation (Was he hurting? Was he worsening? Were we closer to the end, and what came after? Was that a seizure or just a hiccup or a giggle?), that I’m learning for the first time how to be a mother to a child who is independent and will continue to be so; a child who I hope will live a long life and attend my funeral and scatter my ashes in a place of her choosing, as is the right order of things, or at least the order we think we sign up for when or if we start families.

Ronan was my silent, sweet companion. Charlie talks back, has opinions, ideas, moods, and so many strongly felt emotions that she can express and sometimes name. “I feel lost,” she tells me almost wistfully when she’s confused, and sometimes, “I’m sad,” when she gets pushed at school and she “pushed back so strong” but then clearly feels bad about her actions; or, in New York City, in a hotel room all to ourselves visiting friends, “This is so fun and I’m so happy!” In moments like these, the shift from one parenting experience to another is jarring; the adjustment knocks me off kilter, like a top spinning wildly on a table and falling to the floor, spinning still.

Charlie and I eat the rice and sing “Gorilla in the Sky” (original lyrics and three-­line score by me) and then we’re off to the grocery store, where I buy Charlie a twenty-­dollar enormous princess castle Mylar balloon in exchange for the promise that she will please stay buckled in the cart for thirty minutes while I race through the aisles getting only half of what’s on the list, in addition to much that’s not on it: a massive cupcake topped with a fist of whipped cream and bright pink candy sprinkles; a box as big as a brick of Goldfish crackers; and bubble bath that makes popping noises as it dissolves in the water, creating a shade of blue that looks like toxic sludge. “I won’t drink it!” she promises.

As soon as we arrive home and are headed up the back stairs, stopping to look at lizards, checking out the many birdhouses left in the yard by the previous owners, calling out for Meatball, the stray cat Charlie has named and who we sometimes see skulking through the yard, searching for the tuna and sardines we leave for him on a pink plastic plate, Charlie gets distracted and releases her balloon. “No, wait!” I shout, as if the balloon will mind me. I drop the grocery bags in an effort to save the shiny pink castle from floating up to the top of the tallest palm tree in our wild Southern California yard, where it rocks in the slight breeze, taunting Charlie, the four princesses—­Ariel, Rapunzel, Jasmine, Cinderella—­slowly rotating past her vision.

“Princesses, no!” Charlie cries, as if they have failed to invite her to the party in the tree. She turns to me. “Why Why Why can’t you get it? You’re tall! Why?” She stands on her tiptoes and reaches upward with her sticky, sweaty hands, sobbing. After fifteen minutes that feel like a hundred, I am able to coax her, sweating and sniffling and practically hyperventilating, off the porch, where the temperature hovers around 107 degrees. I collect the scattered groceries and pile them on the table, toss the raft of broken eggs in the trash, put the battered milk carton in the refrigerator, and return to a despondent little girl, sitting on the couch with her hands in her lap, silent and sad, floating in an existential, tear-­swamped toddler daze. I try every distraction and consolation—­songs about fairies, twinkling stars, and swimming turtles. I attempt to soothe with mom dream logic: “Maybe the balloon will float down again!” “Isn’t it so fun to look at the princesses having a tea party high up in the trees?” “It’s like a castle in the sky!” “How special and fun!”

Charlie anchors her head over my shoulder and sobs inconsolably.

If I were a member of any mothering blogs or groups, which I am not, I might start a post with a faux-­exasperated “OMG” and title it “Life with a ‘Threenager.’ ” I’m not in these groups because I worry that the “normal” concerns of this mother of Charlie, who is alive and thriving, will make me forget the mother of Ronan, who is gone (isn’t she?), so I stay in the parenting online communities where I do feel at home and where I am a member: those populated by women whose children have died, primarily from Tay-­Sachs or similar diseases, but the club remains open to any parent who has experienced this particular life-­splitting, identity-­shifting, world-­defining loss. These mothers post updates like When he’s really sad, my husband starts building fences. He’s out there for hours, pounding posts into the ground. The thing is, we don’t need any more fences; or this: I feel like sadness is rotting me from the inside out. Crisis makes sense to me, but not the kind that many people experience with their children: broken arms, broken hearts, a bad grade on a test, a high fever that eventually breaks.

Instead, I’m more accustomed to and comfortable with the daily, often moment-­to-­moment crisis assessments of palliative care and hospice: the dread of inevitable death, the complicated machinery and endless paperwork of the hopelessly sick and terminally ill, nurses and doctors traipsing in and out of the house, trying to determine the “time line,” which is code for “how much time is left.” A typical toddler tantrum feels illogical and foreign, but also unremarkable. I don’t belong in either community of mothers, not completely. I am no longer just a bereaved parent, but a bereaved parent with a living child. At Tay-­Sachs family conferences, there is usually a moment when we are asked to identify ourselves: Who is bereaved? Whose child is living? I stand at the threshold between these two identities, and am beginning to understand that I always will. But will it always feel this awkward? Sometimes I’m uncomfortable, sometimes confused, sometimes proud, and sometimes totally numb because I can’t hold all of the emotions at once. Guilt is like a blanket I drag around and sleep under and never wash. There is no predicting when one of these emotions will arise and how long it will last.

When Kent arrives home from work a few minutes later, after a ten-­hour workday as editor of a regional magazine and a forty-­minute commute in each direction, Charlie is heaped in my lap, hair damp with sweat, face tear-streaked and red. “Balloon,” she whispers plaintively every few seconds and then snuggles into my armpit.

“What happened?” Kent asks, looking around. I sense his irritation, and I feel it, too. In the hour I try to reserve daily to contain the damage an active toddler can make, I’ve been reading favorite books, offering Popsicles, producing magic wands—­all the crowd favorites. As a result, unwashed dishes sit in the sink gathering stink and crust; the kitchen floor is littered with dried-­up spaghetti that feels like being poked with knives if you happen to step on it; books and checkers and Lego and pieces of cheap plastic toys are scattered everywhere; a few plastic cars precariously block entrances to rooms, one with a stuck horn playing the theme song from Frozen with a fading battery that renders it a funereal dirge. I feel inept and undone. I feel ashamed.

“Balloon,” I say without thinking, and the wailing starts up again in earnest, with this new and highly sympathetic audience of one: Daddy. He runs over and scoops her up. The teachers at school gather in the doorway to watch Kent drop Charlie off in the morning. He hugs her, asks for another hug, another kiss, then she asks for another hug, another kiss, “Have me!” she cries, and then he waits and watches as she gallops into her friend group, his eyes brimming with tears. “Sometimes dads are anxious to get away,” her teacher told me. “They just drop and go. But we love to watch how much he loves his girl.”

- About the author -

Emily Rapp Black is the author of Poster Child: A Memoir and The Still Point of the Turning World. A former Fulbright scholar, she was educated at Harvard University, Trinity College-Dublin, Saint Olaf College, and the University of Texas-Austin, where she was a James A. Michener Fellow. A recent Guggenheim Fellowship Recipient, she has received awards and fellowships from the Rona Jaffe Foundation, the Jentel Arts Foundation, the Corporation of Yaddo, the Fine Arts Work Center in Provincetown, Fundación Valparaíso, and Bucknell University, where she was the Philip Roth Writer-in-Residence. Her work has appeared in Vogue, The New York Times, Time, The Boston Globe, The Wall Street Journal, Psychology Today, O: The Oprah Magazine, Los Angeles Times, and many others. She is a regular contributor to The New York Times Book Review and frequently publishes scholarly work in the fields of disability studies, bioethics, and theological studies. She is currently associate professor of creative writing at the University of California-Riverside, where she also teaches medical narratives in the School of Medicine.

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A Memoir



— Published by Random House Trade Paperbacks —