Moonrise: One Family, Genetic Identity, and Muscular Dystrophy

1   Backdrop

In January 1984, at the Center for Creative Photography in Tucson, Arizona, my husband, Joe, and I are looking at prints of Moonrise, Hernandez, New Mexico, by Ansel Adams. A slender young man in a suit has brought us, as requested, three versions of this famous photograph. He dons a pair of white gloves before removing the 14.5-by-18.5-inch enlargements from their Plexiglas sheaths, opens the hinged glass viewing case in front of us, and places them carefully, lovingly, on a slanted white board inside. He stands there while we examine the pictures; when we are finished, he will repeat the process in reverse.

I don’t know exactly where Hernandez, New Mexico, is, but it reminds me a bit of Sacaton, the Pima Indian village ninety miles northwest of here, where Joe is a government doctor and where we have lived since July of 1983. We have made the trip to Tucson today expressly to view the Ansel Adams photos, though we had not imagined that there were so many different prints of the same negative.

In Moonrise two-thirds of the space is usurped by a rich black sky; a gibbous moon floats like a hot air balloon in an otherworldly—and yet absolutely southwestern—landscape. A gauzy strip of low clouds or filtered light drifts along the horizon; distant mountains are lit by waning sun or rising moon. Only in the bottom third of the photo, among scrubby earth and sparsely scattered trees, does human settlement appear: a small collection of modest adobe houses and one large adobe church. Around the edge of the village, white crosses rise from the ground at many angles. At first glance they resemble clotheslines strung with sheets or socks, but upon examination it is obvious they mark graves.

The prints differ greatly in quality from the reproductions one usually sees, and they also differ slightly from each other: Here we see a more defined darkness, burned in by the photographer; there a variation in exposure, a grainier texture. But that does not change the essential meaning of the photograph, a meaning one never forgets in the Southwest: nature dominates. Human life is small, fragile, and finite. And yet, still, beautiful.

*   *   *

I didn’t want to move to Arizona, but Joe had obligations. The government had paid his medical school expenses, and in return he promised to work for three years. An anthropology major at Columbia, he had his heart set on working with Native Americans. This job gave him his chance.

It was July when we left our apartment in Manhattan and drove cross-country to Sacaton, the center of the Gila River Indian Reservation. It was a tumbled, tangled, green-gray land, flat and arid, shadowed by barren purple hills. The scattered houses were wood-and-earth or stucco, painted in pastels. Here and there a flash of bright yellow flowers lit the landscape, or a bold saguaro stood. It was as hot as Jerusalem.

The town was not much more than this: a Chevron station, a post office, a Valley National Bank, a grocery, an auto parts store, tribal buildings, and a restaurant, the Sandwich House. We had no library and no park, no movie theater, and no supermarket. Unlike Joe, who worked at the twenty-three–bed hospital, I had no task and no colleagues. I had no child. I was stranded.

We lived on the hospital compound in a government-issue, green-stucco ranch house with linoleum floors and a large square yard bordered by oleander, mountains out our back window. It wasn’t paradise, but it was an oasis, where mulberry and pomegranate trees grew and where the ever-present glow of the emergency-room light seemed to protect us from the rough and alien life of the reservation.

My thoughts were of loneliness and heat, of grass the color and texture of straw; of the garden hose in my backyard, cracked and coiled like a hardened rattlesnake, of black widow spiders nesting in the garage, of the minitornadoes they called dust devils, and of water so hard it left a green coppery crust; you had to scrub it off the bathroom tiles and the plug in the sink.

The first week I dreamed I was running down the Van Wyck Expressway in Queens, close to where I was born, in a purple bathing suit my youngest sister, Mimi, had knitted for me. It was ill fitting, a size too big. I jogged; it was pouring. I had twenty-five miles to go. I couldn’t find my way home, no matter how much I ran. Every street was a blind alley.

By day I sat at my desk in the little front room of the house, forcing myself to write something, at least a paragraph about my new life in this difficult, cryptic territory. I sought control through language, the handholds of grammar, trying to put names to flowers and streets, constructing sentences and paragraphs. I learned the words creosote and medevac; I learned about the local gangs, the Snakes and tbe Chollas, named after a sharp, bristly cactus that easily took root. This was a new world, and for a long time it was a withholding world whose underside was wildness and rage. The summer sky, so still and unflinchingly blue in the morning hours, slowly and insidiously disappeared by evening, giving way to black clouds of dust, to storms that screamed across the valley and sent the tumbleweed spinning and collecting debris, storms that tore the shingles off houses and knocked down telephone poles, sending us into darkness and scrambling for the tiny flame of a Coleman lantern. We lit it and sat, waiting for clarity.

*   *   *

In September the Gila and Salt Rivers flooded. People called it the hundred-year flood, the most rain in generations. We were in Denver at a medical conference when it began. I left Friday morning after a job interview, in drizzle, to meet Joe, who was already in Colorado. We spent a blithe weekend, unaware of the floodwaters sending Arizona into a state of disaster. By the time we returned on Sunday, the Salt River, which runs through Phoenix, was so high we couldn’t drive home by way of the Hohokam Expressway, the route to the south, our usual path to the interstate. Instead we had to head north to Buckeye Road, and skirt the unbridged crossings of the Salt.

By the time evening came, flooding all over the state had worsened. Stories about Clifton, halfway under water, began to reach us. Downstream, the Gila was causing havoc. For the first time since we’d been in Arizona, there was actually water in the river.

Monday morning I had an appointment in Tempe. Though more and more road closings had been announced, I-10 was still open. I set out at about 11 A.M. planning to eat lunch there, keep my date, and drive home. About ten minutes later, I crossed the Gila on the interstate. Several public-safety and police cars were parked on the bridge. I stopped and looked down. The water was rushing forcefully, touching the undersurface of the bridge. I hurried to the next exit, turned around, and drove home.

Two hours later, the interstate closed, and didn’t open again for a week and a half.

That afternoon they closed the state routes that connected Sacaton to Chandler and points north, Route 87 and 93. Only one route remained, the oldest one, across the WPA bridge to Olberg, a one-lane concrete bridge that rose high over the river and had never been damaged by flooding. You could get to Phoenix, but it took two and a half hours for a trip that normally lasted forty minutes. That day Maricopa, an Indian town just west of us, was evacuated. That night, two men lost their lives trying to ford the Gila on Route 93 in a taxicab.

Lying in bed I could hear, from half a mile away, the roar of the Gila River, usually a dry wash. We thought for sure we’d be evacuated next, or that the Olberg Bridge would eventually go out. But neither happened. The river did erode several key roads including the road to Olberg—but not the bridge. And finally the water receded.

*   *   *

I learned I was pregnant on a trip to San Diego in the winter of our first year in Sacaton. We drove seven hours through the desert, past the Air Force base at Gila Bend, through Yuma, through the smooth white walls of boulder to the flat sparkle of San Diego harbor. I bought a skimpy, tie-dyed swimsuit to wear on Coronado Beach. We made a plan to whale-watch. But the second morning, I balanced a beaker of urine on a motel-bathroom sink, and the stuff turned blue. Positive.

I had never been eager for children. It was Joe who, having lost his father at five, dreamed of having his own safe little family. Growing up, the second of four girls, I’d had too much family. Despite the closeness of sisters and the great warmth of home, I remembered too many squabbles in the backseat of our old Buick, too much of the deep and subtle competition of siblings. I remembered my own restless, quarrelsome, inadequate-feeling self. I saw myself as an artist, and for me that meant being alone, without burden. Marriage itself held negative meaning. My wedding pictures show me as a thin, pretty, but nervous girl dressed up in a Victorian tea gown, too depressed to eat. Wasn’t family a trap for me? Did a child mean the end of my career, whatever that elusive thing was?

We talked endlessly, Joe and I. I thought, fleetingly, of abortion. I was nearly thirty, but I still didn’t know who I was. I had dropped out of graduate school to be with Joe. I had left a job I liked in New York after a year to follow Joe to a dusty village far from the life I wanted. And what life was that? Some vague dream that had bookstores, art galleries, and good food—Paris, maybe—a dream that included me as a writer. A life that I had not been able to find, powerless and emotionally unstable as I felt. And it was the shame, the shame of finding myself here, completely dependent, without financial or emotional resources of my own, that so angered me. It had been bad enough, I guessed, in the days when most women had few choices, but in this day and age, replete with choices, it seemed, I had managed to get cornered. I had no one to blame but myself.

When people stopped me and asked, When are you due? I always thought they were asking, What do you do? I didn’t know. What did I do?

*   *   *

I didn’t tell my mother about the pregnancy for a long time, half out of superstition, half out of embarrassment of speaking so frankly and personally about what was, after all, my sex life. I suspect it was also my way of withholding the information that I was hereby like her, which would be a joy to her but to me an acknowledgment of defeat. I’d always held myself aloof from my family; now I had to admit I would be like them. The imperfections, the crowded chaos of family life, the loss of freedom, the loss of beauty, haunted me.

I was completely unconvinced I could go through with the delivery. I felt somehow not a physical being, not substantial enough to have a baby. I felt stuck and confused, but I was also getting rounder and healthy looking, and when I saw myself in a photo Joe had taken of me in my new striped maternity shirt, I had to admit I looked pretty and happy. Still, when I saw a movie with actual delivery-room footage, I was terrified of the tiny clinging being that would be mine forever. It felt like an immense burden.

*   *   *

On a bright, clear Saturday in June, we were driving to Chandler, to the commissary at the Williams Air Force Base, where, because Joe was a uniformed service officer, we were allowed to do our food shopping. I was proud of myself because I was—not typically—organized: I had bundled up all the bags and bottles and stowed them in the back of the orange Ford Bronco. We took Route 93 to I-10, about six miles; near the last curve, a gray sedan was stopped by chance just in front of an overpass. There did not appear to be any intersection here, and we didn’t know why the car was not moving. Joe hit the accelerator to pass on the left, but just at this moment the other car began to make a left turn onto what was apparently a small dirt road. All of a sudden we were rolling over and over in the air, bags and bottles flying, rocks and debris and glass bouncing off the sides of the Bronco. I didn’t even have a second to think, You are in the midst of a car crash. Time was suspended; when the car finally came to rest in a ditch upside down, I was aware of being alive and uninjured, still buckled into my seat belt, but I looked over at Joe, and I was sure he was dead. He turned his head then, and he asked, Are you okay? And I realized he was alive, perfectly alive, and we took off our harnesses and fell to the ceiling of the car and climbed out the broken windows. It was only then I got hurt: a couple of shards of glass cut my knees. I leaned against the destroyed car in the bright heat, and as a man pulled up beside us I remembered then, only then, that I had a baby inside me, a five-month-old fetus who, like us, had miraculously escaped harm.

*   *   *

In April 1984, Joe was diagnosed with basal cell carcinoma, a skin cancer, usually not serious. But Joe’s case was. Over the spring and summer of my pregnancy he had five operations to remove the growth; I became inured to the phone call each week from the plastic surgeon, and Joe’s stoic expression when he said, They didn’t get it all. He wore a Band-Aid on the side of his nose all the time, and I tried not to look underneath at the hole that kept deepening.

In August the doctor performed reconstructive surgery, taking a flap of skin from Joe’s cheek and sewing it over the crevice in his nose. The day of the operation I drove him to the hospital before I went to work. It didn’t occurr to me to tell anyone at work my husband was undergoing surgery. After work I drove back over to Sixteenth Street. Joe was awake, there were black stitches all along the side of his nose, and his face was black-and-blue. He wanted to come home, but when he tried to rise, his head spun and he thought he was going to vomit. All he wanted was sleep. He told me to leave him there, and so I drove the forty miles back to Sacaton in the desert by myself.

Even when I brought him home, the next day, I was still alone. He needed to sleep and sleep, and when I gazed over at him on the pillow at night and saw the bandages and lumpy stitches and bruises, I was nauseated and afraid. He was no longer beautiful and untouched, as I had thought of him before. Ashamed—how could love depend on something so superficial?—I never mentioned it, and neither did he.

*   *   *

When the baby was born by Caesarean section in mid-September, Joe’s black stitches were still in place. At 1 A.M. on a Friday night in September, my water broke; I made my way on rubbery legs into the warm starry night and sat in the passenger seat on top of some old towels as Joe drove the thirty miles to Tempe. There was something thrilling about being there in the middle of the night, seeing, fleetingly, the moonlit saguaros and paloverdes and, behind them, the rugged, ghostly hills.

The baby seemed ambivalent, not yet sure about emerging. His heartbeat was strong and rhythmic, but my own contractions were weakening. Over the next day and a half the doctors and nurses did everything possible to quicken the labor. Again and again I walked clumsily through the corridors and into an outdoor courtyard; the thermometer read 105. I was primed for a natural labor; Joe had been trained by midwives and had delivered many babies himself. We had both hoped for a birth without intervention, but it was not to be. After two nights and days and no real progress, we called the obstetrician, and he decided to operate. Joe burst into tears as they readied me with an epidural block. I relaxed gratefully into the feeling of having no feeling.

*   *   *

The last thing I remembered was the anesthesiologist gently, soothingly, fitting a mask over my face in the operating room and then, sometime afterward, a sound like a champagne cork popping and then the cry of birth. It’s a boy, they said, and held him up toward me carefully with their gloved hands—and then took him away. All was black then till I awoke, seemingly abandoned, in a recovery room. To the question, Where is my baby? the stern matron of a nurse snapped, Half hour more, and retreated into the shadows. There was a wall clock in the room, much like those that used to hang in the classrooms of my grade school, with their bold numerals and sticky hands that so reluctantly moved toward dismissal time. Here, too, in the half-sleep of anesthesia, the minutes crept by in claustrophobic slow motion.

Eventually I saw my baby: a ruddy, broad-faced boy with a fringe of straight black hair that began high on the brow and grazed the tips of his ears. Since he had not squeezed through the birth canal, his head, which was rather large, was well formed, round, and symmetric. He had a slender nose and faint, arched eyebrows set above very round blue-black eyes—they still had that intense, otherworldly glint—and a wide mouth that looked like a willow leaf sideways. One eye seemed to open wider than the other, and it gave him a quirky, puzzled look. He had a short neck and a husky look around the shoulders, like a miniature football player. But his face was finely carved, soft and poetic. He was really beautiful.

They kept me in the hospital on Percocet, recovering from the C-section, for the next few days. Now and then, when I awoke, I asked for the baby. They brought him to me tightly wrapped, papooselike, with a miniature knitted cap on his head. How thrilling to have this primitive being, this seal-thing beside me! I thought of the midrash that said that in the anteworld babies know everything, but that the angel Gabriel touches them just before birth and they lose it all. This baby still seemed alien. He was still in that realm between birth and life. Maybe that was what it was like when someone died, a few intermediate days before the spirit lifted and moved into the next world. My baby’s spirit had not completely arrived.

Maybe that’s why his name did not come to me till the third day. During his lifetime Joe had lost two fathers, his biological father, Arthur, and much later, his adoptive father, Allen. We wished to honor them both, but we didn’t like their names. We decided to retain the initial A. The name of Ansel Adams was in my head because he died earlier that year. Plus—perfect, my parents would like this!—how about Anschel, the yeshiva boy that the girl Yentl became in the I. B. Singer story and the Barbra Streisand film, which was released the year before? A ready-made Yiddish name, a diminutive for the Hebrew name Asher, which meant happy. And Ansel, an artistic name for our sweet, poetic boy. A famous name, an unusual name.

*   *   *

When my family arrived from New York for the bris, my aunt superstitiously spat out a pooh-pooh so no harm would come to this perfect baby, and my mother worried that we had not tied a red ribbon around his stroller to keep the evil spirits away. He was just too good to be true. My older sister, Adele, whose own baby boy was born just five months before, declared Ansel the most beautiful baby she’d ever seen.

*   *   *

Asher means happy, but for the first few months our Ansel was not happy. He was colicky, balky, and fussy. He refused a pacifier. We stuck him in a baby swing while we gulped down dinner, and danced with him to Bruce Springsteen at 3 o’clock in the morning. Every night I was in tears nursing him. My breasts were small and tender, unused to the grabbing and gnawing of a baby’s insistent mouth. But he was also so hungry that he would nurse for forty-five minutes at each breast, then fall off to sleep, and then an hour later go through it again. My mother-in-law, Marilyn, was on the phone with me from Westchester every morning—I tried during these first weeks to sleep late—telling me that if it hurt I should stop nursing. I didn’t want to give up, not yet. I thought about my own mother, the only woman on the hospital floor, she had told us girls, who had insisted on breastfeeding her babies. I consulted with my doctor, and I tried different positions suggested by the La Leche League—but I never mastered the football hold, nor did I discover who was the mythical baby in the books who nursed only fifteen minutes at each breast. I continued nursing into the dead of night, watching reruns of The Fugitive.

When Ansel was about six months old, life began to even out. He became rounder, more adorable, playful, and quick to smile. His eyes were no longer of another place, but right here in this world, his mouth a deep pink, his head a round fuzzball, his nose a triangle. His black birth-hair had fallen out; his new hair was reddish-blonde and wavy. We let it grow long.

Joe and I dressed him up like little girls dressing up their cat: we bought him a miniature Yankee jacket and red corduroy OshKosh overalls; we laughed at him in a blue-and-white striped baseball cap. He wore T-shirts: one with the Pima symbol, the man in the maze; another from Columbia College, with a cartoon by Edward Koren; one with a picture of the Alamo from my friend Marian in Houston. He also wore a Halley’s comet shirt that proclaimed optimistically, I’ll see it again in 2061.

We went everywhere with our portable baby, camping at Organ Pipe Cactus National Monument when he was five months old; through the Chiricahua Mountains, Ansel on Joe’s back in a Gerry carrier; to San Francisco, where we visited Joe’s friends Susan and Eric, who, childless themselves, were enamored of Ansel. There’s a photo on a cable car in San Francisco, Ansel dressed in red corduroy OshKoshes, holding a Garfield balloon. Susan and Eric and Joe and I are all looking toward him, as you would toward a campfire, warming yourself. He is wearing new shoes, his first shoes—suede work boots, size four, purchased at a fancy store downtown called Lilliput. We had tried earlier that day to buy sneakers at a Kmart in some mall, but Ansel, only fourteen months old, had refused somehow even to try them on; he already knew the word no.

We took a trip to Canyon de Chelly in northeastern Arizona, where we rode on a truck with a group of other tourists onto the floor of the canyon. I pointed out to Ansel the ruins of thousand-year-old houses cut into the cave walls. We traveled through the Sonoran Desert to Puerto Peñasco in Mexico, but though we drove onto the beach to within a hundred feet of the Gulf of California, Ansel refused to leave the car to touch the waves with his toes. We took him to Telluride, Colorado, where Joe’s brother Larry, who met us there, refused to eat dinner out because Ansel was so terrible in a restaurant, babbling, unable to stay still, crawling under the table, seeking attention.

He may have been terrible, but he loved food. He would eat almost anything, and he craved strong flavors. In a Chinese restaurant in Scottsdale, we ordered spicy eggplant with garlic sauce, and the waiter looked at Ansel, less than a year old, and warned us, Not for babies. Yet it was for this baby; he gobbled it down. The same for the seviche we ordered at Steve, a new, upscale place in Scottsdale. However, despite Ansel’s healthy appetite, we found out he had allergies; after his first birthday party, when he ate ice cream for the first time, we discovered the persistent rash around his mouth and cheeks was from milk. He had to keep away from peanuts, too, which made him