by Dani Shapiro
Soon we have a diagnosis. A rare disease: West’s Syndrome. Infantile Spasms. Words so alien they aren’t even terrible, not at first. Spasms. Infantile. That doesn’t sound so bad. But it is bad—dire, in fact. Most babies don’t survive, and if they do, suffer brain damage. We spend the next year, the odds stacked heavily against us, in our magazine-worthy home, struggling with rewrites of our Hollywood script, medicating our baby every four hours around the clock, not knowing if he will live or die.
—
Marriages often don’t survive something like this. The thought came as M. and I drove home to Brooklyn from the neurologist’s office, our terribly sick son asleep in his car seat behind us. It was a strange thought, profoundly unhelpful, one of many in a cascade, all white-hot, searing. Faced with the prospect of losing my child, the pain I felt at the notion that my marriage would be tested was dulled, blunted, as if I were being repeatedly stabbed with a butter knife.
I looked over at M. as we crossed the bridge. His hands were tight against the steering wheel, and he was blinking rapidly. I wanted to reach out, to tell him everything was going to be okay, but I knew no such thing, and I was afraid if I moved even a fraction of an inch I might disintegrate. I wasn’t sure I was real. I wasn’t sure this—any of it—was real. How well did I know my husband? We’d fallen for each other the moment we met; spent almost every night together after our first date; married after seven months; had a baby two years into our marriage. We were innocents. We were in the infancy of us.
After breakfast—and a walk to buy chocolates at Gérard Mulot—we went to the Gare de Lyon and took the TGV to Avignon. Avignon was very hot. Got into the (air-conditioned) rental car and drove to Crillon le Brave. Gorgeous spot. We were happy to be there. Unpacked (D. again) and went down to the pool. Discovered D. forgot her bathing suit. Had some cheese. Unwound. Stayed at Crillon for dinner, which was delicious, outside on the terrace. M. began his Provençal quest to consume an entire lamb before we left.
—
Sometimes now, I will watch M. through the window as he runs the dogs, or as he walks along a city street in my direction, before he’s seen me waiting. His hair has gone mostly white, and he’s twenty pounds heavier than when we met. Almost always, he wears jeans and dark sweaters, and either boots or sneakers. On his left wrist, the watch I gave him for a long-ago birthday. His platinum wedding band is on his ring finger. Eighteen years. My parents were nearing their thirtieth anniversary when my father died. My in-laws have reached their sixtieth.
—
In a foreign city, M. and Jacob walk ahead of me, shoulder to shoulder. I trail a few steps behind, blending in with the crowd, enjoying the sight of them. For all the years of his childhood, Jacob looked just like me. At sixteen, he looks like his father. He’s very affectionate, especially for a teenager, and sometimes as they walk they’ll put their arms around each other.
—
I am no longer consumed by the question: What if? What if I hadn’t noticed the infinitesimal seizures? What if Jacob hadn’t fallen down the stairs? What if I hadn’t noticed the seizures before Jacob had fallen down the stairs? What then? In how many ways would I have blamed myself for hiring the wrong babysitter, moving to Brooklyn, living in a four-story home, having a staircase? What if the drugs hadn’t worked? What if M. and I had disagreed on a course of action? There were choices to be made. What if M. and I had seen all this differently?
—
Never once during that year did we exchange a cross word, an insult, an intimation of blame. Never once did we disagree—when faced with monumental decisions—about what to do. What if the us of us had burnt up in all the terror? Instead, we cleaved together and became stronger. This, we shared. For better, for worse.
—
Ever since M. and I have been together, I have been drawn to the marriages and the work of literary couples: Elizabeth Hardwick and Robert Lowell; Sylvia Plath and Ted Hughes; Joan Didion and John Gregory Dunne; Jane Kenyon and Donald Hall. Some of these did not end well. But some—when they did—strike me as partnerships of immeasurable beauty.
Donald Hall describes the rhythm of daily life on his family farm during his twenty-three-year marriage to the late poet Jane Kenyon: “We did not spend our days gazing into each other’s eyes. We did that gazing when we made love or when one of us was in trouble, but most of the time our gazes met and entwined as they looked at a third thing. Third things are essential to marriages, objects or practices or habits or arts or institutions or games or human beings that provide a site of joint rapture or contentment. Each member of a couple is separate; the two come together in double attention. Lovemaking is not a third thing but two-in-one. John Keats can be a third thing, or the Boston Symphony Orchestra, or Dutch interiors, or Monopoly. For many couples, children are a third thing.”
—
Later in the essay, he adds: “Sometimes you lose a third thing.”
—
My parents had three marriages between them before they met. My father had been divorced by his first wife and lost his second wife to cancer. My mother had married young and was divorced at twenty-nine. They married each other in a last-chance kind of way, and stuck together like two people who had run out of options. Thirty years. Whatever hope might have accompanied their early years quickly devolved into mutual disappointments and bitterness.
They did not have a third thing—not even me. They were each lost—to themselves, to each other—before I was born. Thirty years is a long time to go through the motions. I try to visualize the home we shared. Images materialize, as if from an underexposed photograph. A round, white table, very midcentury modern; I wish I still had it. Objects: two telephones, side by side; newspaper clippings; a jumble of folders; scraps of paper on which lists were written in my mother’s distinctive, vertical script. I summon the sound of the garage door opening, the whistle of a kettle, the clink of glass milk bottles, our small poodle’s paws clattering excitedly against the floor. But I can’t summon an image of my parents together. Not side by side at a recital, a school play, a graduation. Not taking a walk. Not lying around reading the Sunday paper.
On my shelf of journals, I have kept a few notebooks of my mother’s that I found in her apartment after she died. From a thin, scarlet one with gold-embossed NOTES AND ASSIGNMENTS on the cover, she appears to have transcribed some comments made to her by my father, dated September 18, 1981: I should have thrown you out of the house years ago. You don’t hear yourself. You drone on and on. Later, she writes: Memories: I was once important. What have I done?
Moments appear like scattered puzzle pieces. What belongs to what? Where are the corners? I can hold only bits and pieces in my hands, and even these are suspect. I can’t bring my parents close. It’s not possible to sit them back down again and ask them: What happened? Did you ever love each other? When did you stop? Your legacy is a daughter who tries and tries to remember you.
“Without the binding force of memory,” observed the neurobiologist Eric R. Kandel, “experience would be splintered into as many fragments as there are moments in life.”
My mind turns once again to the tangible: my own stacks of journals, the lists scrawled in notebooks. Wittgenstein makes an appearance in my commonplace book: “All I know is what I have words for.”
To do:
1. Magician
2. Party favors!
3. Poster
4. Call Dena re bill paying, etc.
5. Dr. Chachua re hospice care
6. Christine at Knopf re travel
7. Cake for J
8. Call Shelly (Mom’s accountant)
9. Cancel Hilary’s visit
10. Balloons (Enchanted Forest)
—
I finally clear out the one room in our house that has no purpose. It would have been a second child’s room, had we had a second child. Instead, a daybed, a cumbersome French antique, is pushed up against one wall. It’s too small for guests to sleep in, though I sometimes st
umble from my own bed, driven out by M.’s snoring, and curl up in it. On the floor, a pile of extra prayer books left over from Jacob’s bar mitzvah three years ago. Paintings and photographs are hung haphazardly on the walls.
One afternoon, like a crazy person, I don’t stop until the walls and floor are completely bare. It becomes pure emptiness, a blank page, waiting for whatever comes next. Something about the room being swept clean pleases me. It stays like this for a while. The wide-plank floors shine in the dappled northern light. The windows are unadorned. The walls, plain. But eventually something seems to be missing. The room has decided: it wants to have a purpose.
In the basement, M. reminds me, we have a heavy iron platform made for a narrow futon. We even have the futon itself, though it has been rolled up for a dozen years, and there is evidence that it has been home to generations of baby mice. We lug the metal frame up two flights, have a piece of thick plywood cut to fit it. In the city one day, I buy a new futon.
After I unroll it, I sit down in the center of the simplest room in my house. The idea is that I will close the door and meditate in this room. I will keep out the encroachments of work and family life. It will be the place where my mind grows still and quiet.
My meditation practice starts with a series of blessings. May I be safe. May I be happy. May I be strong. May I live with ease. The practice involves offering these blessings or wishes first to myself, then to a series of others: a benefactor or teacher, a beloved person; then on down the line: a familiar stranger, an enemy or difficult person, then finally, all living beings, near and far.
M.’s mother appears in my meditation. I see her gray, chin-length bob. Her shiny, lacquered nails. I can almost fold her in my arms. The progression of her Alzheimer’s has been mercifully slow. But now, my once sharp and crusty mother-in-law can’t hold on to a thought. Conversations with her cover only a very small amount of ground before she begins loop back to where she started, the loops ever tightening. Her eyes—so like M.’s—have become faded, foggy. She shuffles when she walks.
But one thing hasn’t changed. Her disease may have robbed her of even the faintest hold on the everyday, but she has lost nothing when it comes to whom she loves. She recognizes perfectly well each of her children, every one of her six grandchildren. She knows that she adores her husband. “What can I tell you?” she’ll say. “I’m still crazy about the sonofabitch.”
Together they have raised three children, built a business from nothing, made some money, lost it, then recovered once more. They’ve traveled the world. They’ve had terrible fights and they’ve made up. “We take it a day at a time,” she always says now. One of her loops. “At our age, what else are you going to do? We still have each other.” Sixty years.
—
From time to time, I type my own name into Google. I search for answers to many questions on the Internet. As I often tell my students, show me your search history and I will show you your obsessions. To vividly wonder. To be anxious. To exhaustingly ponder. A quick perusal of my recent search history includes carpenter bees, Carl Jung, roasted cauliflower, No.6 clogs, coy-wolves, woodpeckers, pellet gun, Citizens of Humanity jeans, White Moustache Yogurt, Alzheimer’s, futon, Aristotle’s Poetics, yoga in Miami, restaurants in Barcelona, Dame magazine, Literary Hub, Nike Tennis Camp, Italo Calvino, and fingerless gloves.
It’s only when I’m traveling—away from home, away from M.—that I tend to search for myself. As if I need to keep tabs on my whereabouts. As if this is a valid way to be sure I still exist. On a trip to Minneapolis, alone in my hotel room, I scroll through mentions on blog posts, online magazines, news items about that evening’s reading at a literary center.
To the right of the screen, a patchwork of images, author photos, mostly. Here’s one, taken by M. a few years ago at a crowded café in Rome. I’m glancing away from the camera and my hands are clasped, in view. My wedding ring—D. finally ended her search for the perfect watch to go with her new wedding band—is clearly visible. A delicate platinum-and-diamond vine, it broke into two pieces on that trip, as it had several times before. It really was—the jeweler herself told me—too fragile a piece of jewelry to wear every day.
Below the photos, the search engine helpfully lists my vitals: where I was born, went to school, a few of my books. It gets some things wrong, or at least misplaces emphasis. I don’t much care, or even pay attention. But then I see a photo of M. It’s a black-and-white portrait, taken on the same day that a friend shot us for our wedding announcement. Beneath it, the caption reads: Ex-spouse.
I sit on my bed, stunned and panicked. I’m due back at the literary center—my students are waiting and I have a busy afternoon and evening ahead of me—but this news has pinned me to the spot. I type M.’s name into the search engine, hoping for different information. Sure enough, under his photo, there I am, listed as his former spouse. I call M. at home in Connecticut.
“Google has divorced us,” I say.
—
We’re at a benefit at Alice Tully Hall in which celebrities have been asked to read the work of poets. The final reader of the evening is Kris Kristofferson. I had a crush on him when I was a teenager, and I’ve been watching him from my seat in the third row. According to the program, he’s supposed to read a William Blake poem.
Instead, Kristofferson is helped slowly across the stage and plugs his guitar into the amplifier. No poem, then. It shouldn’t come as a shock, I suppose, that Kristofferson is an old man, close to eighty. He has the same great craggy face, and it’s not a stretch to see the heartthrob just beneath the surface. I feel M.’s leg pressed against mine as we listen to him tune up and begin to play.
Busted flat in Baton Rouge, waitin’ for a train…
The crowd explodes. There’s something electric about the iconic song being sung by the man who wrote it, one so frail now he needed help lifting his guitar and strapping it on. His voice cuts through decades like a saw through a tree trunk. Kristofferson’s on-again off-again lover, Janis Joplin, died just days after recording “Me & Bobby McGee.” How many thousands of times has he sung “Me & Bobby McGee” through the years? He has said that every time he sings it, he thinks of her.
I steal a glance at M. He’s looking straight ahead. I know what he’s thinking. M. spent most of a year working on the screenplay for a biopic of Joplin. Project after project had crashed and burned, but all the signs looked excellent for this one: The money had been raised by a passionate producer. M. had brought in an Oscar-winning director. A movie star with singing chops had signed on. During that time, I felt a secret, thrilling vindication. Finally, finally, went the song in my head. I’d always held fast to the belief that things would work out for M.—for us. That we’d be able to take a step back from the edge. In recent years, I had scrambled to pay the bills as M.’s career took some hits. It had begun to wear on me.
I grab M.’s hand as we listen to Kristofferson thrum the last cords of “Bobby McGee” on his acoustic guitar. The Joplin project fell apart, though occasionally a rumor flies around that Courtney Love is now attached, or Renée Zellweger, or Melissa Etheridge. Whatever happens, he will no longer be a part of it. Where does hope go when it vanishes? Does it live in a place where it attaches itself to other lost hopes? And what does that place look like? Is it a wall? A sea? Is it the soft bafflement I sometimes see in my husband’s eyes?
During the time M. lived in the world of putting that film together, Janis sang the sound track to our lives. That tragic, troubled, brilliant young woman who blazed, then went dark, like a meteor—she was with us wherever we went. She pleaded with us through our car’s speakers as we drove the hills of Connecticut. She became the ring tone on M.’s cell phone. Didn’t I make you feel like you were the only man? Didn’t I give you everything that a woman possibly can?
—
From the shelf of journals: a hardbound cloth diary with a vintage botanical butterfly print inset on its cover. The endpapers are an elegant gray and displa
y an ornate crest surrounding the words: Labor Omnia Vincit. Work conquers all. There was indeed a time in my life when I had come to believe that work—not love—conquered all. Beneath the crest, in a deeper gray: Made in Italy exclusively for Cavallini & Co. San Francisco. Perhaps it was a gift. Or maybe I bought it for myself with the best of intentions.
The journal seems brand-new, untouched. The spine cracks when I open it. On the first page is a single entry, dated April 30, 1996, shortly after I had signed a contract to write a memoir. Where on earth do I begin? Do I cut back and forth in time, as I am inclined to do in my fiction? Do I tell the story chronologically and try to make linear sense of it? Or do I allow it to be a patchwork of moments? Do I incorporate the very idea of writing a memoir into the memoir itself—the fear of exposure, of hurting people I love, of finding out things I don’t know—or don’t know I know? How much of the truth do I tell?
—
I’m in an airport in Colorado with M. and Jacob. We’ve just spent the past week in Aspen—a working vacation—where I taught at a conference. Each morning, at a little before nine o’clock they’d leave—for breakfast, a hike, a walk into town—and my students and I would begin our deep dive into the manuscripts of the day. Particularly in memoir workshops, the stories themselves are often wrenching: a kidnapping in South Africa; an uncle convicted of murder; a husband’s betrayal; a son’s suicide.
We speak of the writer not as you but, rather, she. We don’t get caught up in the events themselves, but instead focus on the order and shape, the larger sense the writer is trying to make out of what has happened. We are engaged in “the monumental task,” as Vivian Gornick tells us in The Situation and the Story, “of transforming low-level self-interest into the kind of detached empathy required of a piece of writing that is to be of value to the disinterested reader.” While in Aspen, I was on a panel one evening with Andre Dubus III, who spoke of what happens when a memoir devolves into self-pity: “Wah, wah, wah. Should we call the wambulance?”