The Still Point Of The Turning World (20 page)

Back at Upaya, I walked down to the small shrine on one of the tree-lined paths that twist and wind behind the buildings. Under a large tree are offerings made by visitors, residents, teachers: a Buddha statue holding flowers, a corner of fabric, a rock that reads “baby girl,” a bottle of Coke swinging on a string from a branch, pieces of glass arranged in a circle in the dirt and flashing in the sun. Things placed by living people. In the distance a deer bolted through trees to the road. A sky striped with the beginnings of sunset. The windmill was still in the early evening.

No matter how old Ronan may have lived to be, his body would have failed him, he would have died. It’s a common thing, when someone has a life-limiting illness, to say that the body is “failing” him or her. But according to this understanding the only way our bodies wouldn’t fail us would be if they remained immortal, if they never got old, or diseased. If they never changed. If we were gods. If we, quite simply, didn’t die. It is a unique and terrible privilege to witness the entire arc of a life, to see it through from its inception to its end. But it is also an opportunity to love without a net, without the future, without the past, but right now. I didn’t want to be a hysterical mess during Ronan’s final moments; I wanted to be loving and calm. I wanted to be a witness. I wanted to sharpen what was essential in my life and let some of the endlessly worrying externalities go fuzzy. I wanted a less bossy brain, a less insistent heart, less clutch at the life of my baby.

Buddhism instructs its followers to be at ease, always, with not knowing, with uncertainty. I realized over the first nine months of Ronan’s diagnosis—from January to September—that I didn’t know a single thing: not my own mind, not my own heart, not what drives me or inhibits me or makes me who I am. Everything, truly, was and is uncertain. Does it take a true skeptic to be a true believer? Maybe.

But what about the unbinding that the Buddhists talk about, those last moments before the final moment of life? If hospice care workers and family members tried to create the story of a person’s journey, working with their memories and victories and losses, putting together this unique puzzle through picture and narrative, Ronan’s story was like a puzzle with no pieces. What did he have to lose? A baby with no memory, the senses dimming and then entirely dark, that mysterious and magical organ of the brain just running out of steam, out of juice, out of
prana
or spirit or whatever. The winner of this prize or this medal or the mother of this many or the resident of this town or the teacher of this institution or the member of this family or the partner of this person or the singer of this song or the writer of this book or the creator of this theory or the spokesperson for that product or the person who was friends with that famous person who was famous at that time or the person of this list or the thinker of this thought or the person of this type, race, color, body, category, background, class held no meaning. For Ronan, it never did. There was us, and him, and that was it. Frank told us, “Remember that to him, you are the two faces of God.” All he had to lose, in that scenario, was Rick and me. We could not follow him where he was going; he would no longer need us.

But Ronan still needed me on that Sunday afternoon in September, and I took him out for another walk. I felt the weight of his head against my chest, the vibrations of his coos and snorts and his one word, “gee.” I had a great view of his toothy smile. I held his toes and combed the ducktail of curls at the back of his head with my fingers. I was literally attached to him. “Wear your baby!”—all the “natural” mothering books suggested when I read them while I was pregnant, and wear Ronan I did, my most precious accessory.

At Upaya our teachers told us that to be fully present for a person who is dying you must have a strong back and a soft front. Most of us, they pointed out, live with the reverse. We are outwardly defensive, and because we resist compassion we are actually weaker. A broken heart is an open heart, and there exists great strength in a shaky vulnerability. Ronan was the ultimate soft front. The most dear, the most heartbreaking physical representation of anything I had ever in my life been able to give, been given, or cared about. And all of it, someday, like Ronan, would be lost.

On this sleepy Sunday, the sky ink-blue and darkening, Ronan’s eyes drooping, I wondered if it was little more than semantics or brain gymnastics. I knew that after Ronan was gone, I would listen for him each night, and his face would be the first face I’d think of in the morning, the face I’d always miss. This missing would be a daily ritual for the rest of my life. And I would continue scribbling, hoping it would help me reach the end intact or sane, and I did it knowing that any scribble might be my last. I will look at the many photos of him, wanting to remember, wanting to forget, longing to reexperience particular moments or recall little details about his face. And the world was still the world, and yet . . .

One of our teachers at Upaya told us that Jizo Bodhisattva, the boatman who ferries the dead across the river, the companion of travelers between worlds, is also the guardian of children. Was it too much to ask to be on that same boat, if even for a moment, ferried across with my son in my arms, or worn in a front pack? I’d sit at the back and let his feet dangle in the water, slip the smallest coin in his mouth, another in mine, pay for the passage of both of us. Because I know, in whatever final lucid moment I have before I die, I will see Ronan’s face, and I will wish I could hold him one last time before I, too, am released from this body and make my own crossing from this life into whatever comes next.

23

T
here was a story I often told myself when I thought about “after Ronan.” It wasn’t a place I wanted to visit, but the story helped me go there, and I hoped it would help me visit him, or the dream feeling of him, until I was old and had forgotten everything else. Part memory, part dream, part wishful thinking.

The afterlife story is this: I’m on Inishmore, an island off the West Coast of Ireland, walking toward Dun Aengus, an ancient fort that has been eroding for centuries; half of it has already fallen into the ocean below. I visited the Aran Islands with friends in 1995, but in the dream memory I am alone. I scale rocky famine walls that crisscross the landscape, passing cottages and a few isolated people. A fog descends. I can no longer see my hands or where my footsteps are taking me, so I turn around and walk in the other direction, away from the sound of the water. I am curious and unafraid. My mouth tastes of seawater and wet wool. My feet and legs hurt, but not in an unpleasant way. In fact, I feel sporty and alive. My blood is warm and I can hear my heartbeat, steady and fast but not frantic. The color of the sky begins to change; there is sun behind the thick reach of gray-white clouds. Slowly, it gets warmer and warmer. There are more people on the road now, nodding at me as they pass. The sleepy town is no longer sleeping. I walk down the dirt road, past a yard where baby clothes are fluttering on a clothesline, still too wet and heavy to flap in the wind, which is gentle and sea fragrant. The sun is strong now, almost tropical strength. I reach the shore of a small rocky beach littered with seaweed, sit down, then lie down and finally fall asleep. I wake up to barking, splashing and my face pounding with sunburn. Sound echoes and astounds here as it does when you rise from a dream state; it refracts and shifts like light, like moods.

I look out over the water and see them on a jagged outcropping of rock: a few dark seals, their sleek and impossible bodies—so graceful, so smooth—slipping in and out of the water. They move from rock to sea and back again, shaking their delicately whiskered faces, water glittering like sun-touched glass from their whiskers, tails powerful and flapping. Ronan: in Irish, little seal. Ronin: in Hebrew, song. I watch them for a long time, those seals, dipping in and out of the water, cool and calm and singing.

•   •   •

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ACKNOWLEDGMENTS

A book like this—and any book, really—is never written in a vacuum or without help. Writers write alone, but we are also of the world, and I am deeply grateful to and humbled by the one of which I am fortunate enough to be a part. Writing this book often felt like running an endless race, a lonely and troubling one, although I was never alone. It is not an exaggeration to say that the people (often strangers) who accompanied me—cheering, weeping, encouraging, reading, listening, talking or just silently witnessing—have made it possible for me to live through the experience of losing my child and tell his story. This—my planet of friends—is an ecosystem that has quite literally sustained me. All of you, too many to name here, have allowed me to spin in your generous orbit and, in so many different ways, have grounded me. You know who you are, and from the truest and wildest part of my heart, I thank you.

There are several people I’d like to name specifically: Jennifer Weber, for her early suggestion to write about Ronan and her behind-the-scenes brilliance; Lisa Glatt, Bernadette Murphy, Dani Shapiro, Sarah Sentilles, Gina Frangello and Rachel Dewoskin, for the intelligence and insights they brought to early drafts and sections of this book as well as for their loving and loyal friendship. Thank you to Tara Ison, Julia Goldberg, Carrie Scanga, Elizabeth Tannen, Annik Lafarge, Jennifer Pastiloff, Catherine Davis and Emily Miles, for loving me enough to read and listen and cry and rage, sometimes endlessly and at all hours, day or night. Thank you to my parents, Roger and Mary Rapp, who love and support me even when I mystify them and to whom I can always tell the truth. Thank you to Rob Roberge, Chris Abani, Robert Wilder, Kate Weldon LeBlanc, Jenny George, Eloise Klein Healy, Kaliq Simms, Amy Dixon, Caeli Bourbeau, Alissa Tschetter-Siedschlaw, Cheryl Strayed, Colin Moore, Steve Hirst, Barbara Pitkin, Edmund Santurri, Andrew Primm, Nouf al-Qasimi, Monika Bustamante, Amy Silverman, Chris Simpson, Ryann Watson, Megan Reif, Terri Rolland, Emma Simmons, Wendy Ortiz, Sandy Lee, Carin van Olst, Juliana Jones, Donna and Lew Bagby, and Gareth Batterbee for crucial reminders about hope and possibility in a time when there appeared to be none. Thank you to Nancy Conyers and Libby Costin for rooms full of light and beauty in which to write and think and be.

Thank you to my friends and colleagues Matt Donovan and Dana Levin and to all the faculty and staff at the Santa Fe University of Art and Design for the time and space to work on this project; thank you to Tod Goldberg and the faculty and staff at the University of California-Riverside Palm Desert MFA program for giving me a writerly home. Thank you to my students for teaching me. Thank you to the Fundación Valparaiso in Mojacar, Spain, for much-needed solitude and writing space. Thank you to the Upaya Zen Center for facilitating the crucial work of integrating contemplative practice into end-of-life care. Thank you to the editors of
The New York Times, The Rumpus, The Santa Fe Reporter, The Nervous Breakdown, Slate, The Huffington Post, Bark
and
Salon
for telling parts of Ronan’s story.

Thank you to Ronan’s doctors and therapists, especially Janet Padma Mandell, Ashleigh Linkenheimer, Alana and Dawn, for giving him comfort and for accepting him just the way he was, at every stage of his life.

Thank you to the National Tay-Sachs and Allied Diseases Association for everything they do for affected families and children, and a special roaring thank-you to the dragon mothers and fathers who taught me how to be a parent. Thank you, Becky Benson, for bringing me so many times from darkness into light.

A hallelujah-style, double high five thank-you to my agent, the fierce and funny Dorian Karchmar, who believed in this book from the very beginning and who is my advocate and my friend. Thank you to my fabulous editor, Andrea Walker, for her incredible mind, brilliant editorial insight and sparkling kindness to a writer working her way out of the dark. A heartfelt bow to everyone at the Penguin Press for making this book happen, and in just this way.

And finally, thank you to Rick Louis, who loved Ronan the way all fathers should love their sons: without condition and without strings and with the force of his whole heart. This book is for our boy, but it is also for you.

SUGGESTED READINGS

Armstrong, Karen,
A Short History of Myth

Atwood, Margaret,
Alias Grace

Basho-,
The Complete Haiku

Bishop, Elizabeth,
The Complete Poems, 1927–
1979

Brooks, Geraldine,
Year of Wonders: A Novel of the Plague

Case, Neko, and Her Boyfriends,
Furnace Room Lullaby
(album)

Dalley, Stephanie,
Myths from Mesopotamia: Creation, the Flood, Gilgamesh, and Others

Ford, Katie,
Deposition: Poems

Gluck, Louise,
The Wild Iris

Halifax, Joan,
Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death

Havel, Václav,
Open Letters: Selected Writings, 1965–1990

Heaney, Seamus,
Opened Ground, Poems, 1966–
1996

Kafka, Franz,
Letters to Milena

Kantonen, T. A.,
Life After Death

Kasulis, T. P.,
Zen Action: Zen Person

Kenyon, Jane,
Otherwise: New and Selected Poems

Kushner, Harold,
When Bad Things Happen to Good People

Levin, Dana,
Sky Burial

Lewis, C. S.,
A Grief Observed

Mann, Thomas,
The Magic Mountain

McCullers, Carson,
The Member of the Wedding

Neruda, Pablo,
100 Love Sonnets

Pardi, Philip,
Meditations on Rising and Falling

Plath, Sylvia,
The Collected Poems

Robinson, Marilynne,
Gilead: A Novel

Shelley, Mary,
Frankenstein

Sherwood, Frances,
Vindication: A Novel

Szymborska, Wislawa,
Poems: New and Collected

Weil, Simone,
Waiting for God