A mother writes about her teenage son, afflicted with muscular dystrophy, and the life he leads, and the one he can look forward to
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 1/2" x 18 1/2" enlargements from their Plexiglas sheaths, opens the hinged glass viewing case in front of us, and places the photographs 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, ninety miles northwest of here, the Pima Indian village where Joe is a government doctor and where we have lived since July of 1983. Now it's December. We have made the trip to Tucson expressly to view the Ansel Adams photos, though we did not imagine that there would be so many prints from 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 larger 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 on more-careful examination it is obvious that they mark graves.
The prints differ greatly in quality from the reproductions one usually sees, and also differ slightly from one another: here we see a more defined darkness, burnt 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.
Iam at the Grand Union in Dobbs Ferry, New York, with my son Ansel, who is thirteen years old. It's raining. He begged to come, so I brought him, not really wanting to, because I had to bring his wheelchair, too: it weighs more than 200 pounds and isn't easy to maneuver into the minivan, even with the ramp. I have to wrestle the motorized chair until it faces forward and then, bending and squeezing into the narrow confines of the van, I have to fasten it to the floor with several clasps. By the time I have done this even once, I'm irritable. A trip to the supermarket means doing it twice and undoing it twice.
Anyway, we've finished our shopping, and we leave the supermarket. Ansel is in his chair, without his hooded yellow raincoat from L. L. Bean, because he has decided that at his age a raincoat is babyish, not cool. He's afraid people at school will laugh at him. Maybe this is true, I say, but I think it's stupid. Why get wet when you can stay dry? Needless to say, I lose this argument.
Before loading the groceries I open the van door so that Ansel can get in the front seat, where he always sits if Joe isn't with us. He parks his chair at a distance from the minivan, so that I'll have room for the ramp, and starts to rise, laboriously. No, "rise" sounds too easy, like smoke going up a flue, airy, like yeast bread rising in the oven. Ansel does not rise. He shifts sideways in the seat and pulls himself up heavily, propping his eighty pounds against the armrest for balance. He leans with his left arm, twists his right shoulder around to straighten up, and brings his hip and buttocks to a partly standing position. Actually he's sort of bent in half, with his hands still on the chair's joystick. There is a moment of imbalance. His feet are planted far apart, farther out than his hips, and he needs to bounce back and forth a few times to bring his feet together. Finally he's up. He begins walking toward the door in his waddling, tiptoe way. His spine is curved quite a bit from scoliosis, his stomach is forward, his hands are out at his sides chest-high, his fingers outstretched.
His balance is so tenuous that his five-year-old brother, Toby, can knock him down. Sometimes Ansel will bellow, "I'm tired of everyone always leaving things all over the floor! Don't they know I'll fall?" It's true that we're a little careless about this. But Ansel will trip over anything—an unevenness in the sidewalk, the dog's water dish, some bits of food on the floor, things expected and unexpected—and sometimes over nothing. Sooner or later he falls. It's part of the routine. And the older he gets, the more he falls.
Now, in the Grand Union parking lot, he falls. Who knows why—it could be the wet ground. He's in the skinny aisle of asphalt between our car and the one parked next to us. He falls, and it's pouring, and I'm still loading grocery bags into the back.
"Mom!" he calls at me, half barking, half crying. "I fell!" There's such anguish, such anger, in his voice when he falls, and such resignation. He never thinks I hear him.
And why am I suddenly so angry? Such terrible impatience rises in me now. Am I really such a witch, such a bad mother, that when I'm loading groceries and my son falls, I don't have the time or patience to cope? Why am I so angry?
"Wait a minute," I say. "I'll be there in a minute."
So he sits on the wet pavement between the cars. I know his sweatpants are at this moment soaking through. I can see that the wheelchair, waiting to be rolled up the ramp, needing to be pushed and yanked into position, is also getting wet. Its foamy-nylon seat will need drying out later.
A middle-aged blonde woman has wheeled her shopping cart into the lot and approaches us. "Can I help?"
No, you definitely cannot help, runs through my head. This is both true and self-righteous. Physically, the job is not meant for two; it's easier for me to do on my own. How would we two, and Ansel, even fit between the cars?
I grit my teeth and smile and say, "No, no thanks, really. I can do it." People always seem puzzled and upset when they see him fall. It's so sudden, an instant crumpling, without warning. They can't see the weakness, the steady deterioration of his pelvis. Maybe someone would fall this way if he'd been hit hard in the solar plexus; I don't know. But Ansel's feet give way for no apparent reason, and he's down.
The blonde woman has heard me, but she keeps standing there, her hands clamped around the handle of her cart, her eyes moving from Ansel to the grocery bags to me. I know she means to be helpful, and in a way I do want something from her—pity? an acknowledgment that I am more noble than she? But mostly I want her to go away. Don't look at me. Don't watch this.
"Mom! Where are you?"
I turn from the blonde woman; she fades away. "Okay, I'm coming," I say. I try to wedge myself between the cars so that I can retrieve Ansel. There's a special way to pick him up: you have to come from behind and grab him under the arms, raise him so that his toes dangle just above the ground, and then set his feet down precisely the right distance apart.
I'm in pretty good shape, but Ansel is dead weight. Another child could help you, could put his hands around your neck. His feet would come off the ground at even the suggestion of lifting. But Ansel is pulling me down, his limp shoulders, his heavy leg braces, his sodden pants, his clumsy sneakers. I can't hold him. My own sneakers slip on the wet pavement.
The New York Academy of Medicine, on 103rd Street and Fifth Avenue, is not exactly in the slums, but it's not really the Upper East Side either. On a dreary, drizzly morning I park at the Metropolitan Museum garage, on Eightieth Street, and walk up Madison, past Banana Republic and Ann Taylor and patisseries and fancy meat purveyors and little French children's-clothing shops that display sashed dresses with hand-embroidered yokes in their windows. But above Ninety-sixth Street, near the Mount Sinai Hospital complex, the scenery and the people change abruptly; everything's older and more run-down. Street peddlers hawk books, batteries, Yankees caps, cheap scarves, acrylic ski caps, five-dollar handbags. I see an obese black man leaning on a cane, harried-looking workers with Mount Sinai badges, a woman exiting a hospital building through a revolving door carrying crutches.
Eleven years ago, when Ansel was three, doctors diagnosed in him a form of muscular dystrophy called Duchenne, which rapidly destroys muscle tissue, confining its victims to wheelchairs by adolescence and invariably resulting in early death. Like hemophilia, it is almost always transmitted to sons from asymptomatic "carrier" mothers. In my extended family, which produced an overwhelming number of daughters and almost no sons for two generations, the existence of the Duchenne gene—or, more correctly, the existence of an altered gene that doesn't properly code for a particular muscle protein—was unknown, a subterranean truth. My mother and sister and I, all carriers without outward signs, never guessed at this defect in our genetic heritage.
Joe and I gave our son, conceived and born in Arizona, the name of the great photographer we admired, Ansel Adams, who had died earlier that year. The name seemed apt; Ansel was, as people often told us, prettier than a picture, amber-haired and round-eyed, with a perpetually quizzical but serene countenance and the build of a slender but sturdy miniature football player. For two years he developed normally, reaching all the benchmarks on or close to schedule. He was an engaging and beautiful boy, gifted, one suspected, in some intangible way. When his teacher in nursery school began to point out Ansel's deficits in language and in gross motor skills (he couldn't master rudimentary grammar, couldn't alternate legs on the stairs), we refused to see any problem. It was impossible for us to believe that this perfectly wonderful child, our child, was not perfect at all, that he was in fact handicapped and would become progressively more handicapped.
It took a year for us to accept his differentness, to have him professionally evaluated, to reach a diagnosis. And although we have been to dozens of doctors and have dealt with every aspect of his disease, it has taken me eleven years to get up the nerve to come here, to the Academy of Medicine, and look squarely at what will happen to Ansel in a future I have not yet completely faced.
The library reading room is large and quiet, with a high ceiling and a faded tapestry on the wall behind me. At a long oak table beneath a grand chandelier, surrounded by busts of famous scientists, all men, who peer down from atop the bookshelves, I sit nervously waiting for the books I've requested. It makes sense, I suppose, that Louis Pasteur sits head and shoulders above the lesser-knowns.
But not even Pasteur, I remind myself, could have cured muscular dystrophy. Nor could any of the nineteenth-century doctors who described the disease, including the English physicians Charles Bell, Edward Meryon, and William Gowers and the French neurologist G.B.A. Duchenne, after whom the most common form of muscular dystrophy is named. And despite hundreds, perhaps thousands, of studies completed and articles written and compiled in prestigious journals such as Muscle and Nerve and The Lancet and The Journal of the American Medical Association, sitting right here in the bound volumes surrounding me in this rarefied room, no one, even in this century, has found a way to save my son.
A young woman arrives with my books: a general text on Duchenne muscular dystrophy from 1993 by a British geneticist named Alan E. H. Emery, and two books by Duchenne himself, one from the 1870s and crumbling with age, called A Treatise on Localized Electrization (De l'électrisation Localisée, first published in 1855), and one translated in the 1950s, Physiology of Motion. But I find the writings of the great doctor inscrutable and bizarre, filled with stuff about electrical impulses and pictures of strange apparatus; Duchenne devised such instruments as the "dynamometer," or strength gauge, and the harpoon biopsy needle, which he used to study muscles in his patients at different stages in their short lives (before that, muscle tissue was mostly observed at autopsy). Duchenne's books have nearly no narrative; they consist mostly of pages and pages of minute drawings and observations of every muscle in the human body, with one- and two-page sections such as "Motions of the Thumb" and "Flexion of the Forearm." One forgets that before this century medicine was largely descriptive, and that one of the main questions about muscular dystrophy was whether it was primarily neurological—affecting the spine and nerves—or truly muscular. Duchenne confirmed that the disease had no neurogenic basis. Nevertheless, there was something obsessive if not downright nutty about him—or maybe my impatient twentieth-century mother's mind fails to grasp the connections between his results and his writings.
But when I open Emery's book, Duchenne Muscular Dystrophy, everything else vanishes. I read between lines; I am transfixed, by turns elated and restless. For the first time in eleven years I look at pictures of boys in the advanced stages of the disease. There are obese boys and skeletal boys looking like Auschwitz victims, their spines twisted and their emaciated arms and legs dangling. There is a boy with grotesquely enlarged muscles throughout his body; he resembles a deformed child body-builder, a waxy muscle-bound doll, a strange, surprised balloon boy. In many cases no attempt has been made to conceal the identities of these boys; their faces are in clear view, and their misshapen bodies are naked, so one can see the deterioration clearly. There is something vulgar and vulnerable about the nakedness of these boys, their genitalia seeming in some instances particularly underdeveloped compared with the rest of their bodies and often too frankly exposed. At home I don't see my son naked, as I used to when he was little; I glimpse only the outward signs of deterioration—the thick-veined calves, the legs bruised by falls, the callused, deformed feet, the increasingly swayed back, the heels that can no longer reach the floor. I focus on his face: despite its fleshy roundness, caused by steroids, it is still beautiful to me, with its alert, quizzical eyes and arched eyebrows, its stubborn mouth (how easily it registers disgust or frustration or delight!), its straight, broad nose with a suggestion of freckles, its crown of chestnut hair.
I study an engraving from 1879 of a boy in three positions rising from the floor, in what doctors call a Gowers' maneuver, named after the physician. In the first scene the boy is on his hands and knees; in the second his rump is raised into the air and his two hands press on the ground for support; in the third he rests a hand on his thigh to balance himself. Here I experience the oddest feeling—a thrill of identification. Yes! There it is, exactly. My child. So true, so utterly Ansel. But obviously true of other boys, too, over hundreds or thousands of years. I feel less lonely, in a way, but I can't deny what's in the photographs. And there's no denying the statistics either: 90 percent of boys with Duchenne die by the age of twenty. At sixteen about half are dead. A nine-year-old we know who has Duchenne can no longer walk. Should I feel happy or sad knowing that Ansel is at the far end of the curve?
Some pages I barely glance at—I know the early symptoms, and I have already witnessed some of the decay in Ansel. I know that there is a "progressive weakness of movement, first affecting the lower limbs and then later the upper limbs" and "a gradual increase in the size of many affected muscles." I have seen that the "lumbar lordosis becomes more exaggerated and the waddling gait increases"; I see the shortening of the heel cords.
But as the disease progresses, Emery's book reminds me, the breakdown intensifies: "Muscle weakness becomes more profound, contractures develop, particularly ... of the elbows, knees, and hips ... movements of the shoulders and wrists also become limited. The talus bone [protrudes] prominently under the skin ..." Finally all hell breaks loose: "Thoracic deformity ... restricts adequate pulmonary airflow ... a severe kyphoscoliosis [curvature of the spine] develops ... a gradual deterioration begins in pulmonary function with reduced maximal inspiratory and expiratory pressures. By the later stages there is a significant reduction in total lung capacity." In other words, the spine contorts, compressing the chest cavity; the respiratory and heart muscles weaken; and eventually the child can't breathe. Less commonly, the heart gives out.
In a chapter called "Management," I review the paltry fixes: knee orthoses; braces that extend from ankle to groin; stretching exercises; steroids (the author, writing in 1993, downplayed their importance); wheelchairs; standing frames; rigid body jackets; the "Luque operation," which involves inserting two rods in the spine; tenotomy, or cutting the Achilles and other tendons; finally, assisted ventilation and drainage of the lungs. Some sound radical, some gruesome; at any rate, they are only Band-Aids, short-term measures that extend life perhaps one year, perhaps two. Sooner or later, usually by their mid-twenties, all boys with Duchenne succumb. Of 144 patients Emery studied, only sixteen made it to their twenty-fifth birthdays.
Every night, hands in his pockets for balance, on tiptoe, his jaw set in a grimace, his feet hesitantly reaching and shuffling, leaning longer on the right than on the left, Ansel stumbles along the hallway between his bedroom and the living room, willing himself to walk. It is unheard of—a fifteen-year-old with Duchenne walking. "Amazing," I tell him, "amazing," as he collapses in his wheelchair. We know it can't last forever, but we keep our fingers crossed.
Sunday morning I wake up, descend the stairs, begin boiling water for coffee. From the stove I get a glimpse of the cabinets that Joe fixed the day before: two low storage cupboards whose doors had been yanked off by the harsh sweep of Ansel's wheelchair. For weeks the jumble of our kitchen had been exposed, its internal disorder revealed. On Saturday, Joe finally mended them, filling in the holes and jimmying the hardware. The doors hung a bit askew, leaving an empty space like a knocked-out front tooth. Still, for the moment they stayed in place.
But now I see that one door has come loose at its hinges again; it hangs perilously from a single screw. Inside the darkness, chaos.
Ansel and I are on 165th Street in Washington Heights, on our way to the doctor at the Neurological Institute. I picked him up at school, and he told me he loves me, as he does at least once a day, and then we drove here and parked in the Kinney Lot, where, because of our "handicapped" placard, the attendants let us squeeze into a ground-level spot.
This is the neighborhood where Joe and I first lived together, in medical-school housing in one of the huge modern buildings making up The Towers, which overlook the George Washington Bridge. We did not particularly get along with our multiple roommates, and we did not always like each other, but it was our first home, and it holds memories: the "Man in the Pan" early-morning lectures at which the doctors-in-training studied dissected organs; the late Sunday nights when I searched for Joe and his friend Peter, who were studying for a Monday exam in the recesses of the vast Health Sciences Library; the white-coated world of the medical complex, with people waiting in line for treatment, and the marble floor of Columbia-Presbyterian Hospital, through which I walked when coming home from the subway. I had just read Malcolm X's great book about his life, and I was always aware of our closeness to the Audubon Ballroom, where Malcolm was shot, and also of the darkness and danger of the 168th Street subway station, where several rapes and murders had taken place. My sister's boyfriend, who worked in a microbiology lab at Presbyterian, had been stabbed in the heart on the train on his way to work. He recovered, because he was taken to the emergency room quickly, but he had a scary, knotty scar on his chest where the mugger's knife had gone in.
There are sweet memories, too, mostly associated with food: the French toast at the Haven coffee shop, around the corner, and the farmer's cheese from the old Daitch Dairy (a remnant of the aging Jewish community), and the old-fashioned luncheonette on Fort Washington, where a soda jerk whipped up chocolate malteds made with Breyer's ice cream. The apartment in The Towers was where I held a successful surprise party for Joe; I managed to concoct Julia Child's fanciest chocolate cake, le Marquis, without his ever noticing. It was also where I had to deliver the news to Joe that his adored stepfather had died suddenly, at forty-eight, of a heart attack.
We are supposed to see Dr. DeVivo at least once a year, but it has been a year and some months since our last visit. When Ansel and I arrive, we are told to sit in a secluded, empty waiting room, where he does his math homework and I glance at a magazine called Healthy Kids. Joe arrives—in a suit, because he is now the head of family practice at the Catholic Medical Centers, in Brooklyn and Queens—and a receptionist says that we are in the wrong waiting room. We go and sit for another twenty minutes in a much more crowded room. A small boy in a stroller cries, seemingly overtired and cranky; his mother, in a foreign language, tries to soothe him. He has tiny white braces on his legs, but I can't make out what his problem is. I never ask, "Why are you here?" although I always want to know. It sounds too much like "What are you in for?"
When DeVivo, a white-haired, stocky man, enters the room, I am not sure I recognize him, it's been so long. But he is wearing a white coat, and he seems to be in charge, so we follow him into his large office at the end of the hallway. I am very conscious that on our last visit Ansel walked from the waiting room to the office, and I remember the look of surprise on the doctor's face: How amazing that a fourteen-year-old with Duchenne could still walk! Now Ansel wheels his way down the long corridor, and I am the one surprised that he could have walked so far so recently.
Joe, Ansel, and I sit in three upholstered chairs facing DeVivo, who sits behind a massive desk. I remember suddenly how poorly Joe did in his neurology rotation in medical school; how he didn't like the neurologists—they were too cerebral and academic, he felt. DeVivo's manner is restrained, and when he speaks, he addresses Ansel first. He asks Ansel about school, about his clarinet lessons (the doctor plays trombone), and gets only a typical teenager's grunts. The pleasantries aside, he gets to what's important: "Tell me, Ansel, how do you feel, physically, compared with the last time I saw you?"
"Well, I use the wheelchair more," Ansel says. "I get out of the wheelchair three or four times a day and stretch, and then I walk a few steps. That's all. I can't really walk more than that."
He doesn't say it sadly, just as fact; but Joe and I and the doctor know it is sad, and it sits heavy in the air, a presence among us. I think of Ansel at five, walking into town with me because he suddenly wanted to bake cookies and we had to buy cookie cutters. He walked slowly, but he walked all the way, a quarter of a mile in each direction.
For a moment no one else can speak. There isn't anything to say, is there? He gets worse. He will die. Even if it's slow, it will happen. It's a whole life, not a half-life, divided infinitely. Sooner or later it will not be there.
But in one way it's not sad. Ansel has spoken, after all, and we have all listened. He is no longer a small child but the voice of authority. Who can know the answers but Ansel? He has a deep voice and a little trace of a moustache on his upper lip. He and the neurologist discuss the best course of therapy, his medications (would Ansel agree to take three enzyme capsules a day, rather than the one he has been taking?), and his adherence to a low-salt, low-fat diet.
Joe, DeVivo, and Ansel retreat to the examining room that adjoins the office, where the table, made for small children, is too high for Ansel to mount. I stay behind, aware that he will not want his mother present when the doctor prods private parts or asks personal questions. I also don't want to see the fat that spills over the elastic of his underpants or the angry calluses on his feet when he removes his splints and shoes and socks. I'd rather look at the stack of magazines on luxury-home renovation, at the wall of books at the back of the room, at the color photos of racing sailboats—this must be one of the doctor's hobbies. I look out the dirty window of the Neurological Institute, half a block away from our old apartment at The Towers. It is strange to be here, looking out at a past that contained not even a flicker of Ansel. Why is it unthinkable to look at a future without him?
Joe and I are on the street on a Sunday afternoon, late. The forsythia is in bloom; there is yellow everywhere, and a dark sky with just a strip of light over the Palisades. Joe wants to know what I am writing: it is about Ansel's growing up and deteriorating all at once, the "unnaturalness" of a child's beginning to die just when he is beginning to flower.
Joe rejects this, furious. "What are you saying—because it's not average, not the norm, it's unnatural? That's like saying homosexuality is unnatural." I see his eyes flash behind his glasses. "What's unnatural about it?" he says. "It is in fact the natural order of things, that mutations occur. That's who we are, who we have to be, as humans."
"So you have no feelings about Ansel's getting worse?" I demand tearfully.
He purses his lips angrily, forcing air through them. "Of course I have feelings about it. But why is it necessarily sadder for someone to die young than old? Is it sadder for Ansel to die than a ninety-year-old man who's never done anything, who has nothing to show for his life? Anyway, Ansel's not dead. I can't mourn for him. And I refuse to see my life as a tragedy!"
"Well, that's what I'm writing about," I say. "And I'm sorry if you don't think it's sad!" Then I can't speak for ten minutes. I stride along next to Joe, up the hill beside the Food Emporium, and I don't look at him. I am too stubborn and angry. How can he say that a dying child is not heartrending? How about that boy Zachy, the only child of one of Joe's colleagues, who died at eight or nine of a brain tumor? Wasn't that worse, more tragic, than, say, my father's death at seventy-three? Wasn't my father's life, in concrete and substantial ways, long enough, whereas Zachy's was not?
At the top of the hill, thinking back on Zachy's death and its aftermath—his stunned parents sitting shiva in the apartment; the boy's baseball-card collection still visible in his bedroom—I can no longer hold on to my anger at Joe. I see him simply as a fellow sufferer: trying to construct meaning from ill fate, to find solace in the destruction of his first-born. He is just groping for a spiritual handhold. This is Joe, used to such loss (two fathers and a mother, all young, all loved), soothing himself, explaining to himself, as a child might, why death comes. And this is just the other half of me.
In six months Ansel will be old enough to drive. In September he will be sixteen, able in New York State to take that step toward adulthood—obtaining a learner's permit. Even though we don't have the details yet, even though his father is not convinced that he can physically operate a motor vehicle, Ansel and I talk about driving as a reality—how he will take over the wheelchair van and I will buy a tiny red Miata, the car of my dreams. He is not as crazy about cars as some teenage boys are, but one day when he and I see a cab-yellow sixties Camaro idling at the corner of Cedar Street and Broadway in the town where we live, his left eyebrow lifts, he peers at me sideways, and he says, "Wow." He's ready.
In the books on muscular dystrophy one learns that there are three markers: the onset of disease, confinement to a wheelchair, death. Ansel is approaching the date of confinement. He will be there, I am sure, by his sixteenth birthday.
I have panic attacks nearly every night. Awakened by some minor provocation—for instance, my daughter, Diana, enters the room to check the time—I turn over, sit up, and quite suddenly experience dread; there is no other word. I blink my eyes, because I am sure I'm going blind, and scratch my middle fingertip with my thumbnail, to assure myself that I'm not paralyzed. I try to take the pulse in my wrist, but I'm too scared and can't count right. I am outside my body, physically detached, at the end of a long passageway, drowning—all those melodramatic scenarios of what it's like to die.
Seven years ago, when I was in labor with Toby, a nurse injected me with Stadol, a painkiller, and I became distant and paranoid like this. I held on to Joe's hand, literally for dear life. "Tell me I am not dying," I said over and over, to hear my own voice and to hear him respond. What an irony, I thought then, to die giving birth!
Now my heart seems to be racing in my head, but my blood is glacial, cold and slow. I have finally gone over the edge! The fear feeds on itself. I get dressed so that I can be ready to drive to the emergency room, if need be.
Sitting on the edge of the bed, sure of my own doom, I wonder suddenly, Am I trying to experience my own death in place of Ansel's? Am I the sacrifice?
It is the middle of March, and every moment pulls me two ways. In a community church in White Plains, New York, that looks like a cross between a pagoda and an airline terminal, I sit with Joe, Diana, and Toby in a fan- shaped room filled with folding chairs. It is a kind of backward room, because one enters by way of the stage and descends to the seats. Ansel, who will be performing with an ensemble from his music school, can wheel onto the stage but not into the audience, so after he plays, Joe will have to carry him down the steps.
When the woodwinds come onstage and are seated, Ansel seems taller than the others, though he's actually quite short, because for the first time he is playing from his wheelchair. Usually he transfers, with difficulty, to a regular chair, but it was thought that the amount of time before the next group came on was too brief to allow for that. I can see Ansel now and then between the arms of the conductor. He is puffing out his big cheeks, like Dizzy Gillespie on the horn. He loves the clarinet, the instrument he chose when he began music lessons at school, in the fifth grade. Joe was against it. "What's the point," he asked, "when all boys with muscular dystrophy develop breathing difficulties? He won't be able to play for more than a couple of years; it will just be frustrating." As he does with nearly everything, Ansel stood firm, and got his way, and it is good that he did. Clarinet playing is his breathing therapy as well as his joy, and it may be the reason his lungs show no deterioration yet.
He progressed slowly when he took lessons at the public school, but as soon as he began at the music school, he flourished. Under the guidance of a gifted teacher Ansel has become a disciplined music student who, after many days and nights of mistakes, false starts, and practice, practice, practice, can be depended on to produce a fine sound. When he leaves his bedroom door open, I enjoy the lovely strains of the Weber clarinet concertino or of a Hindemith sonata. He is not a virtuoso; he is more of a plodder, but he plods well. He has learned to respect the difficulty of the task and the beauty of the result.
Sitting at the concert, I feel the pleasure of his playing, but seeing him in the wheelchair, I cannot shake the feeling of loss, a loss that feels sharpest when I love him most. I know that when boys become confined to their wheelchairs, their chests and lungs become constricted. Wind is the first thing to go. Who knows which way the wind blows? Who knows where my love goes, how my love grows, where the time goes? Despite my best efforts, despite my pride in Ansel (that serious, stubborn, laboring face!), a tear wells up in the corner of my eye. I shift my glasses so that Diana will not see. She does anyway.
"Mom, why are you crying?" she asks. I shake my head. "Ansel?" she whispers urgently. I nod, and wordlessly I put my arm around her shoulder—her bare, cool, pubescent shoulder, upon which I perhaps place too great a burden—and hold her close to me. Later Ansel sits with me, and Diana sits alone all the way in back. Joe has pulled Toby out, because he is complaining so much about being at a concert. The Festival Orchestra, sounding very professional despite being jerkily led by a very thin, very young conductor, plays Bach. In the midst of the quite proper, cultivated audience, Ansel and I dip and bounce our heads and shoulders to the rhythms. Near the end Ansel whispers, "Have you noticed everybody else here is completely still, no one else but you and me is moving to the music?" I have.
I keep with me much of the time a letter from a friend of a friend whose boy died of Duchenne at twenty-four. Even though I have never met her, I identify with this mother, because her boy did well; he must have been an outlier, like Ansel, to live to such a ripe old age. My son "was the absolute center of my life," she wrote. "Now I feel like the woman in the Hopper painting 'Cape Cod Morning,' looking out the bay window, wondering what will come next."
Ansel has been away from the house for almost the entire weekend, attending a model UN at a nearby high school Friday night, all day Saturday, and Sunday morning. We are not used to his being away, and Diana and I both feel his absence. The question seems to be not "Is this what it will be like when he's away at college?" but "Is this what it will be like when he is dead?"
"Ansel is what makes the house happy," Diana says later that week, and I think back to the moment of his birth, when I heard a sound that reminded me of the popping of a champagne cork. I think of his name: a variation of Anschel, a diminutive of Asher, which in Hebrew means "happy."
Diana and I try to think about what makes Ansel fun. "He's just a very up person," she says, which is odd, because he is also a big complainer, a class-A kvetch. "Puns," I say. "Remember when he wrote that story about the teenage monster who wasn't frightening enough because he didn't have enough 'scaritonin'?"
"Non sequiturs," Diana offers, and it's true. I used to call Ansel the king of non sequiturs. We might all be having a conversation about, say, the fact that the Lobster Roll is the only restaurant worth going to in the Hamptons. The rest of us might consider the topic exhausted and move rapidly on to two or three unrelated topics. We might be talking about the book I am reading for my psychology class in graduate school, or about how boring Toby finds the second grade. And then, maybe half an hour later, sometimes a day later, Ansel will pipe up with "There is that Mexican place in East Hampton," as though there has been not even a tiny break in the conversation. His neuroses are funny too, I say: For instance, he worries about global warming every time the temperature in winter is above average. Everyone else is enjoying the sun, but Ansel is worried! And he always worries about being worried: "Should I be worried?" He is so much like me, and like my father, that I can't help laughing at the reflection.
I am aware that having a limited future makes Ansel freer. Next year, for example, he plans to enroll in the vocational-training program offered by the school system, even though he is on an academic track. The vocational program includes culinary arts, and Ansel knows that is what he wants. Isn't food what he thinks about all the time? The taste of a blood orange or a fresh fig may be the most important, most commented-on part of his day. In English he has chosen "luxury foods" for his special project; he writes of the high cost of hunting for truffles, of the packaging of caviar, of the pleasure of watching the guys behind the counter at Zabar's slice lox. He faithfully reads the "Dining Out" section of The New York Times and leafs through the Penzys Spices catalog.
He doesn't care that taking culinary arts each morning at a location in northern Westchester County will seriously limit his academic program. He does not want to sit through another year of science, even though it would "look better" on his college applications. He has no time to waste. Ansel calls a meeting with me and his guidance counselor and the director of the program, the last of whom he informs, "I can't do something without being serious about it. Otherwise I just don't think it's worth doing." When the director describes the culinary-arts program, which is almost completely hands-on cooking, the corners of Ansel's mouth curve into a little smile, and the guidance counselor, who knows him well, says, "I don't often see that look in Ansel's eyes."
It is apparent that cooking is what he must do. Being a public program, the vocational-training class must accommodate him, so he will probably have an aide for lifting heavy pots off the stove and similar tasks. It seems exciting, although I am a bit concerned that Ansel may miss out on two years of science, French, and math, which are given in the morning, when he will be off school grounds. After the meeting I stay behind to speak with his counselor.
"How would it be if he just does culinary arts for one year, not two?" I ask. Ansel would like to start the program this September, his junior year, but I think it will be better for college-admission purposes if he waits until his senior year.
"Yes, I assumed one year," the counselor says, adding, "Preferably his junior year."
I am surprised. "Because ...?"
"Because I know culinary arts will be in the morning next year; I'm not sure about the following year. And that would be better as far as academics go. Because he has to take history and English. Also ..."
I know the other reason. She lets me say it. "Because we don't know where he will be physically in two years. This may be the only year he can do it."
I meet an old friend in the city for lunch. We walk to the restaurant, and she rattles on about the short story she is writing. I cannot open my mouth; I am sure I will start to cry. For two weeks I have been up every night with shoulder pain: a pinched nerve, probably brought on by a slipped disc. Yesterday my kitchen was gutted in advance of a major renovation for Ansel's benefit, and there are still bent nails sticking up from the floor every few inches.
My friend tells me about her latest challenge: her therapist has asked her, "What do you want?" As in life.
"Want," I say, almost sneering, and as I open my mouth, everything spills out, and in a little Vietnamese restaurant on Third Avenue, I start weeping. "Who cares what you want?" I say accusingly, and I am frightened by my feeling, which comes out so raw and powerful and pitiless. "I want my son to live a long life. So what?" Every word is a choking effort, my tongue swollen and sore, my throat like gravel. Why bother wanting?
I have two dreams. In the first one, two cars are driving fast in the left lane of the highway, in the wrong direction. Everyone in our car can see as we approach them that this is a very dangerous thing. But it's too late to stop. The cars crash head-on into other cars just in front of us, and I can see the drivers thrown aside, into the air, the cars tin-can crushed. But we are saved. We only witness the horror and move on. We don't even stop. What can we do?
In the second dream Ansel and I come upon a red-rock canyon in the middle of a southwestern desert. We are not really surprised; we have been expecting to find the canyon. It has a lip of rock across its entrance, so we cannot see beyond. Its contents are secret. But once we get inside, we are aware of water and sand, and a very beautiful light glinting off beach umbrellas. We are at the ocean. Ansel can walk. We stake out our place on the sand. We have brought our lunch and a blanket, and we sit together and eat: crusty French bread, a wedge of Parmigiano-Reggiano from Todaro Brothers, slices of ripe mango. We are happy.
When Ansel rises from the table today, his legs tremble as he transfers to the wheelchair. Our house is in complete disorder: dining table and refrigerator and microwave are all sitting in the living room, because the kitchen renovation is not complete. The shelves in the living room hold two-by-fours; a sugar bowl; strips of insulation; our good silverware in a blue-felt Bloomingdale's bag; a tin candy box filled with paper clips, packing tape, nail clippers, misplaced trinkets and bits of toys, Pokémon cards and Monopoly hotels.
After dinner Ansel is sitting at the table drinking tea and trying to read Treasure Island, which he finds difficult because of the antiquated language and because he has been interrupted over and over again by Diana and Toby, who are bored. I am in the next room, also reading, when I hear a commotion: Ansel is screaming and weeping, "Stop! Stop! I can't stand it, stop!" in a weird, high, animal-like shriek. When I run in, I see that he has taken his empty teacup and begun to bang it over and over again on the table; while I watch, horrified, he puts the cup down and begins to bang his forehead rhythmically.
"What happened?" I demand angrily of Diana. "What happened?!" I am stamping my foot, the rage spilling out of me. "What did you do?"
"I didn't do anything!" she retorts. "He was burping again—which he always does!—and I told him he was disgusting and he went crazy! God! You blame me for everything!"
Now Ansel begins to shriek again. "I'm an idiot! I'm an idiot! I did it because I'm an idiot!" His cheeks are big and red, and he can't catch his breath, and he begins to whimper. Embarrassment, comprehension, a normal sibling fight turned abnormal—a fifteen-year-old acting like a three-year-old.
"Pick him up," I say quietly to Joe, who has come in from the next room. "Pick him up and carry him into his room."
Later I ask Ansel, "What is it like—that anger? Are you on another planet, like I used to be when I had temper tantrums when I was a kid?" I know that anger is a locked box, but it is also freedom—a soaring, powerful white light.
"I don't know," he says. "I don't know. I just think if I scream and scream and scream maybe I'll stop being angry. Maybe I'll get it all out of me."
"Is there so much anger?" I ask. "What's it about?"
"Please, Mom." He turns his head away. "Please. Let's not talk about it anymore."
Another day he comes home from school depressed. "I'm worried about dying," he says. I honestly don't know what to say. Since when am I so wise anyway? I'm tired, and I worry about dying too. Driving home fast on the Saw Mill River Parkway, I sometimes think, What will happen to my kids if I die? It is always Ansel's face I see; how could he forgive me?
So I don't respond, not really, and later, when he is putting together the pieces of his clarinet, he wails melodramatically, "I'm so depressed, and no one cares!" Now I feel compelled to react, so I go into his room. He continues: "I was depressed in the first place, and then when I got to health class my teacher had written 'The Stages of Grief' up on the blackboard—we're studying death—and it just made me more depressed ... And then we saw part of Schindler's List, clips of the movie ..."
"Did you see the part with the little girl in the red coat who is wandering around the ghetto and then gets shot?" I ask, thinking this had upset him.
He looks at me. "She doesn't get shot, Mom. She hides in the building ..."
"But she does, Ans. Eventually she does get shot."
"Nope," he says. "You're wrong, Mom. You forgot."
I don't want to contradict him again, though I know I'm right. I think of his great capacity for denial. I remember something the physician John Bach wrote in an article about boys with muscular dystrophy: "Successful adaptation does not depend upon an accurate perception of reality."
This morning I catch sight of Toby's torso while he is dressing. He is seven and a half, slender and small, built like a dancer. He has that nice square chest that a boy is supposed to have, with a line running down the center from breastbone to belly. Ansel would have been beautiful too, perhaps more so. I remember a photo from the summer before Ansel began taking prednisone to slow down the deterioration of his muscles, when he could still walk, ploddingly, up the unrailed front steps. A blue-purple T-shirt, a sun-tinted face: a quite handsome eleven-year-old. Before the chipmunk cheeks, puffy from steroids. That must have been the summer before the wheelchair. My beautiful son.
Ansel's independent reading this month: Mark Twain's Roughing It; most of Phillip Lopate's The Art of the Personal Essay; "The Snows of Kilimanjaro" and other stories by Ernest Hemingway; M.F.K. Fisher's A Cordiall Water; The Red Badge of Courage, by Stephen Crane; National Geographic; S. J. Perelman's Chicken Inspector no. 23. His selection of a project for social studies, any "ism": Dadaism. Favorite music: Louis Armstrong, Thelonious Monk, show tunes, the Buena Vista Social Club.
Ansel and I are sitting in the living room, late. Everyone else has gone to sleep. He is doing his daily exercises: leaning with his palms against the back of the couch, pushing his heels down toward the floor, one at a time, to lengthen the Achilles tendons, trying to stay mobile for as long as possible. He has had a tough day, and he is very tired. Earlier he asked Joe to carry him to the bathroom (he usually walks), and when he got there he fell trying to reach the toilet.
"I don't know why I'm having so much trouble," he says to me later. "Do you think I'm just tired? Why should I be so tired?"
"I don't know, Ans. It may just be the disease. It's getting worse, I guess. That's really crummy, isn't it?"
He doesn't say anything. He is cutting his toenails, concentrating on the task of keeping all the parings in one pile on the coffee table.
"Isn't it?" I repeat.
He looks up. "No. I think everything that happens has a reason."
"I guess that's because you believe in God," I say.
"I used to get depressed thinking about this stuff," he continues, seeming to ignore my remark. "But then I realized it doesn't help. So I don't think about it anymore."
I ask him at another time, "Do you think about the fact that you may not have as many years as other people?"
"No, Mom. I just want to be happy."
Ansel says everything that happens has a reason. He uses the toilet in the middle of the night and flushes it, and the flood of water in the pipes wakes up our collie in the basement, and she begins barking, and I wake up, and it is a quarter to four.
In a way I'm not tired, so I get up and go down to the basement, where the dog is kenneled. She is wide awake and on her feet, waiting expectantly, as though we planned a rendezvous. She nips my heels and tries to push through my legs as we mount the stairs. Then she shoots outside, and I follow.
It's warm out, and completely calm; the three-quarters moon is immense and neon-yellow, hanging over the Palisades, nearly merging with the horizon. It seems otherworldly, like—and I know this is a ridiculous thought—an object from outer space. In other words, it appears as it is—completely apart from, oblivious of, anything human.
I don't know if it's rising or setting. Joe will be able to tell me in the morning, but right now I don't want to know, not yet. I stand there with the mystery of the moon for some time, with the thrill of knowing its beauty—having it to myself for a few rare moments—while the dog sniffs under damp leaves, looking for a place to pee.
When she is finished, I take her back to the basement and give her a full bowl of water, which she drinks thirstily. I go to sleep easily, somehow fulfilled. Ansel says everything has a reason. He is fifteen. In two hours it will be daylight.