View upcoming events at Boston College
Books by alumni, faculty, and staff
Order books noted in Boston College Magazine
Join the online community of alumni
View the current BCM in original format
The parallel language of fragile X
On January 21, 1993, my son’s pediatrician called me at home. As I looked out at the icicles that hung from my window, he gently told me that J.P.’s blood test was positive for fragile X syndrome. Two months later, when I met with a specialist, I got my first lesson in genetics. Each of us receives 23 chromosomes from each of our parents, on which all our tens of thousands of genes are arranged like beads on a string. Fragile X syndrome is a single-gene disorder located on the X chromosome, the chromosome J.P. received from me when he was conceived. Males with the condition are typically more severely affected than females, as they do not have another, “good” X to supplement the “bad” X, inheriting instead from their father a Y. In fragile X syndrome, a gene called FMR1 suffers a mutation that shuts down the production of a protein crucial for proper brain functioning.
The doctor said I was most likely a carrier of the mutation. What is insidious about fragile X is that the abnormal comes from the apparently normal. Catastrophe is gradual: A stretch of DNA expands slightly in one generation, slightly more in the next, and finally reaches a breaking point in the third.
Today, at age 22, J.P. reads at about the third-grade level. Books are too complex to hold his attention, but he easily reads items in Country Weekly, a country-music magazine that he discovered on a visit to Florida and now receives by subscription. He loves newspapers, especially the racing section of the sports page, the TV listings, and the headlines of our city’s daily tabloid the Boston Herald, which he circles as they strike his fancy. Paging through the paper after him, I glimpse his mind at work in his excited yellow circles: “Teacher Caught in Sex Romp with Student” or “Moose Loose in Beantown.”
My own life as a reader began in first grade at St. Peter’s School in Cambridge, Massachusetts, where in September 1960 my family—my parents, my brother, Mark, and I—moved from St. Louis for the school year while my father got a master’s degree in law at Harvard. The world opened up for me that year: Meaning burst out at me from words on the page, and time took shape in the hands of my Alice in Wonderland wristwatch. My after-school playmate was a boy, for heaven’s sake, the only kid my age in the apartment building. I could take nothing for granted in this new life.
I’m sure my parents have less magical memories of that year. Ensconced in a dark apartment in Cambridge, a city part Old World ivy and Kennedy glamour, part rude Easterners and iron piles of dirty snow, the four of us were in terra incognita. My parents had no advantage over me here, for we all faced our own unique challenges. My father, a law professor, had to face the challenge of being a student again at 33, not to mention Harvard snobbery. My mother was expecting her third child after having lost two babies, and was so plagued by morning sickness that, with the perverse taste buds of pregnancy, she could keep down only canned SpaghettiOs. In February, she gave birth to my sister Cathy, who had a host of medical problems. My brother, a mere four-year-old baby in my eyes, didn’t yet attend school, so that left me with a world to conquer and no one paying close attention.
I made a place for myself in a crowded class of 50 first-graders, becoming something of a teacher’s pet. My parents were now no longer the only important voices in my life, though I never forgot my roots. One day it was my turn to read aloud in class.
“She laughed and laughed and laughed,” I read in my flat Midwestern accent. Sr. Mary Stephen stopped me right there.
“No, Clare,” she said, “she lahfed and lahfed and lahfed.” Her broad a was as astonishing to me as if she spoke in tongues.
“No,” I said primly, “that’s not how we say it.” Usually respectful of authority, I would not capitulate on a matter so intimate as language. I asserted my origins in the face of cultural tyranny. Sister tried again, but I would not budge. Later she told my parents the story and they all had a “lahf” at my expense.
J.P.’s speech, so late in developing, is as hard for strangers to understand as the broad Boston accent was for me as a child.
It is rapid and has an odd rhythm that is a function of both unusual syntax and intonation. Speech therapists call this cluttered speech. As a mother, I feel I am always filling in the blanks, creating the text like some literal embodiment of the reader imagined by literary critic Stanley Fish, asking my son to repeat himself over and over and still finally concluding that the “text in the room” is my own. In fact, we are co-creators, he and I, and when meaning leaps out in our midst we grab it by either side, like a trophy with two handles.
It is not just how he says it, but what he says, that turns J.P.’s speech into riddle. Children with fragile X find it difficult to answer a direct question and offer answers that are oblique at best. Although this is an issue of cognitive proc-essing, their nervous systems also cannot withstand a direct approach, and they often cannot make eye contact with their questioner. Teachers of those with fragile X are encouraged to sit side by side with their student, so that the child can take in information without having to fend off the barrage of sensations a direct gaze can unleash. Eye contact is one of the behaviors our culture demands, especially in children—”Look me in the eye when you talk to me!”—and family and teachers alike have had to learn that J.P. is not being disrespectful or inattentive when he turns aside, but shielding himself from an unbearable intimacy.
Sidelong when I crave head-on, oblique when I yearn for a direct embrace—the posture I take in communicating with my son goes against the grain of a mother’s instinct. But in some sense it is really where all of us are situated: mothers and children, husbands and wives, lovers, friends—maneuvering carefully in the narrow gap between intimacy and isolation. J.P.’s and my movements are just a little more stylized, like Noh theater when those around us seem to be acting in a Broadway play; while others are bursting into song, declaiming unself-consciously their well-scripted dialogue, my son and I are moving stiffly in our elaborate costumes, acting out a scenario half signed, half spoken. Context is all.
One morning when he was 10 years old, J.P. was eating breakfast and announced, “You’re a great cook, Mommy.” Since he was eating peach yogurt from a carton and store-bought muffins, this compliment was a stretch. A minute or two later, he stood up, juice glass in hand, and said, “This juice is delicious. It tastes like popcorn-marmalade.” He then came over and hugged me with a twinkle in his eye that usually means he’s been up to mischief.
Suddenly, his meaning dawned. The night before, I had microwaved popcorn and put the uneaten portion in a bag that I left on top of the breadbox.
“Did you eat the popcorn in the bag?” I asked J.P.
“Yes,” he answered promptly. Evidently he had found the popcorn before I got up that morning, and, in his own indirect way, wanted to fess up to finishing it. Orange juice plus popcorn equals popcorn-marmalade. The metaphor is decoded.
Metaphor is J.P.’s forte. The moon is a cinnamon cookie, J.P. declared one crisp autumn night at age eight. The summer he attended a special school for children more severely affected by disabilities than he is, he struggled with his self-image and seemed anguished that his parents thought he belonged there. The other kids, he wailed, were “diaper-wipes!” Recently, when I asked why he had put mayonnaise on his peanut butter sandwich, he answered happily, “See, it looks like snow.”
When assigned to write poems in elementary school, J.P. often came up with striking images that once earned him the chance to have his poem read at a school assembly. Asked to describe his concept of “wilderness” in terms of the five senses, J.P. began:
Wilderness feels like
a rainy day
soft as a mealworm
safe from cars.
Wilderness tastes like
J.P. has a way of capturing the essence of people he knows with the names he devises for them, either compounds of his own invention or the names of characters from fairy tales, Disney, or TV. You could know something quite accurate about each of the female classmates he describes in this excerpt from his eighth-grade classroom journal. Asked to reflect on what distracts him in school, he dictated this to his teacher:
Sometimes I think about girlfriends too much. I think about their pigtails and their loveliness. I daydream about Heather, who looks like a mermaid, and Jessie, who looks like Snow White, Melissa, who looks like Tinker Bell, and Shannon who reminds me of her beautiness, and Liana who reminds me of Minnie Mouse, and Danielle who reminds me of Barbie. All these ladies make my mind run like the Titanic. I need to kick them out of my skull so I can slow down and learn.
My son makes lightning-fast associations and then acts on them. One night recently, J.P. and I went with a friend to J.P.’s favorite restaurant, Vinny T’s, where J.P. likes to devour a basket of focaccia and a bowl of roasted garlic in olive oil. The waitress introduced herself as Joan.
“Hi, Joan,” J.P. says, uncharacteristically looking right at her. “I’m your biggest fan.” She laughs and goes to get our drink orders. I find this odd, but then, I’m used to odd. Now J.P. puts his cloth napkin over his head and says to the two of us in a fake accent, “I’m from Frahnce.” This is just as puzzling.
Then Joan returns with the drinks, and J.P. says quickly, “Thanks, Joan of Arc.” My friend and I finally get it and burst out laughing. Poor Joan may still be trying to figure us out.
When my family left Cambridge for St. Louis at the end of the school year, Sr. Mary Stephen presented me with a statue of the Infant of Prague, a representation of the baby Jesus complete with a jeweled tiara that, when not on the infant’s dented skull, resided in a clear plastic box. The nuns had sewn for the statue a pink brocade robe and pink satin cape, trimmed in gold rickrack and lace; the cape really tied, which thrilled me because the clothes were removable, like doll’s clothes. I liked the idea that you could deck out the infant and make him into a royal king and then, in a couple of steps, make him an undistinguished baby again.
The other gift I received when I left Cambridge was just as wonderful, just as premonitory. I had made a friend during this momentous year in a little girl with large round eyes and long black braids. It was my friend Kathleen who gave me my first copy of my favorite book in the world, Alice in Wonderland. A book and a baby, the two poles of my future, defined Boston for me until I returned at 21 to go to graduate school in English.
Alice would become my private heroine, this curious and gutsy but perpetually polite Victorian girl. When I was 18, I even got to be Alice in a production of an experimental version of Alice in Wonderland at my brother’s Catholic boys’ high school; asked why he chose me, the director said that it was pure typecasting. With my brother playing the Mad Hatter, I tumbled in somersaults through the hands of my fellow actors down the rabbit hole into a bizarre new world.
The world of those with fragile X syndrome, as for many cognitively challenged persons, is highly concrete, making abstractions like mathematics almost unconquerable. But this world yields the keys to other mysteries. At Mass on Christmas Day, J.P. sees wine and bread carried to the altar in the offertory procession and exclaims, “Yuck! I hate blood!” J.P. made his First Communion, thanks to a loving and patient nun who gave him religious instruction, so he knew the Catholic belief that bread and wine are transformed into the body and blood of Christ in the sacrament of the Mass. No sooner has he said “yuck” on this Christmas morning than he announces, “I’ll go to Communion,” and rubs his stomach—”yum-yum!” He has an instinctive sacramental understanding of the world, which must be both terrifying and consoling. The Christmas Gospel according to John announces, “The Word became flesh and dwelt among us.” I know this is true because of my son.
J.P. is utterly literal. When the priest intones the ceremonial command, “Let us stand,” my son answers loudly and incredulously, “Why?” After the ritual “Alleluia,” he cheers, “That’s right, guys!” An old ceremony glints with new shine in my son’s ebullient presence.
Our life together has a surreal extravagance. At this same Christmas Mass, J.P. enters the church, only to rush up to the crèche and dramatically kiss the statue of the infant Jesus in the manger. He then looks up at the candelabrum on the altar and says so all can hear, “There’s a menorah!” One moment he is singing with the congregation, making up some of the words of the hymn in a kind of riff on love, and the next he is crying. I cannot predict or control his moods or their expression.
J.P. speaks in shifting registers of diction that mirror the shifting tectonic plates of his emotions. One moment he drawls like a country song, “I’ve got my mom and that’s all I need”; the next he invokes fairy tale, as he trills the r: “You look r-r-r-ravishing! You’re the princess of my dreams.” Sometimes he speaks in what I think of as his “We Are the World” mode: “We are a famil-y, living in harmon-y,” he croons as I fix our dinner. Occasionally, he lapses into the language of old-fashioned storybooks, as when he intones, “Woe is me,” over his cereal bowl.
Then there is the language of romance novels, often heard during middle school as he fell in love with a new classmate every week. “I’m going to make her my wife,” he declared at age 13 of his first love, Shannon, whom he also once called “my little rose blossom.” Another morning he stopped eating breakfast dramatically, saying, hand on his heart: “I think I’m in love. . . . My heart is beating. . . . She’s my heart, my soul, my beloved. . . . It’s my destiny!” Of these love affairs, which come and go in the middle school classroom with such velocity and publicity, he dreamily remarked one day, after listing all his classmates’ crushes, “Love is in the air.”
J.P.’s speech depends on formulas he has picked up, with startling accuracy, from television, books, movies, and pop-culture magazines. He knows the lyrics to a staggering number of pop songs, knows Britney Spears’s latest outrage, knows that a menorah is part of Chanukah, and knows the Spanish expression vámanos. This makes him a kind of poster child for Richard Dawkins’s notion of the meme, a bit of information that circulates in the cultural atmosphere and infects human minds like a virus, replicating itself like DNA. As a writing teacher and academic dean, I am a watchdog of originality, but a concept once crystal clear has become blurred in an age of instant and osmotic communication.
When I taught at Harvard I was forced to report a student who plagiarized almost all her papers in my seminar. She called me at home at night and wailed, “How could you do this? You’re a mother!” She meant to appeal to my sense of compassion, as if motherhood overrode my sense of justice, the rush of hormones flooding the cool honeycomb of my brain. I was insulted, and yet, years later, I see a deeper sense in which motherhood muddies the transparency of originality. We all owe something to those from whom we came. To be human is to set foot on Darwin’s “entangled bank,” a rich loam of mutual dependence and dazzling diversity. Genetically, we are all copycats of our ancestors, except those of us whose text carries mutations. In that sense, my son is a true original, and yet even his originality carries echoes of the long and resonant history of the language his species speaks.
Going to school the Friday before the New England Patriots are playing in the Super Bowl in February 2005, J.P. tells me that his teacher, whom he adores, has told them to wear their Patriots gear. “Ms. Dacey told us,” he warns me, “and she’s the boss.” But then his face softens. “She’s my woman,” he says, giggling, “my honey.” And then, with a wide grin, “She’s as lovely as a peacock’s tail.” My son, in sweatpants and a Patriots T-shirt, trails the glory of the Song of Solomon.
I used to think that i was not the right mother for J.P., that a writer, a teacher of literature, a nonstop talker should not have been matched with a boy who failed to speak for so long, and who finally spoke in a way that is, by most standards, disordered in almost every respect. It has been a strenuous process to understand his needs these past 22 years, to hear what he was saying in his shrieks, his abortive word attempts, his single words, his rapid cluttered speech. I have to listen carefully to decipher what I can and infer the rest; I have to catch meaning on the fly, feint and dodge to feel it hit, but when it does, it hits home.
If I am honest, I have sometimes found a perverse pleasure in my lonely quest for meaning. Poet Wallace Stevens’s “The Motive for Metaphor” begins with a startling accusation or perhaps a confession:
You like it under the trees in autumn,
Because everything is half dead.
The wind moves like a cripple among the leaves
And repeats words without meaning.
In the same way, you were happy in spring,
With the half colors of quarter-things,
The slightly brighter sky, the melting clouds,
The single bird, the obscure moon—
The obscure moon lighting an obscure world
Of things that would never be quite expressed,
Where you yourself were not quite yourself,
And did not want nor have to be . . .
My love for poetry, its melting obscurity, is met by the poetry of J.P.’s speech, our symbiosis as inevitable and paradoxical as the Word and the Flesh—the delicately mutating X in me coming to flower in the full extravagance of my son’s mutant X. He is the poet I’d like to be, and I am his reader.
To live with a person who does not communicate in the same way you do is to know a terrible loneliness. J.P. thrives on repetition. (“The wind moves like a cripple among the leaves / And repeats words without meaning.”) Some nights, as I sit across from J.P. at the dinner table and hear the same answers to my questions as the night before, I feel trapped by the tropes of his—of our—narrow life. If I ask about his friend Shannon, I can be sure that “she’s showing off somewhere” and about his teacher, that she is still a “hottie”; that on TV today Oprah was about “sex and death,” and Ellen was “FUN-NY,” and that tomorrow he will say these things again. Every night he says, “Watch the Bear tomorrow?” and as he leaves the house for school, “Watch Raven tonight?”—two television programs that bookend his day. And yet he also says every day, each time with the urgency of a new discovery, “You’re the best mom in the world” and “I love you to pieces!”
I wonder sometimes whether J.P. is as lonely as I am. He yearns for connection, but his nervous system chokes his attempts to reach out to his friends. Dozens of times I have heard him talking in the guest bedroom in the dark, but when I peek in, he is holding a dead phone to his ear.
“Shannon! How aaaare you? You little scamp!”
“What? You’re going shopping with your mom? Oh, Shannon, how woooonderful!”
Pause. He laughs.
“Well, I don’t know, Shannon. Are you sure?”
And so it goes, for five or 10 minutes.
“J.P.,” I always ask him, “do you want me to dial Shannon’s number so you can really talk to her?”
“No,” he says curtly.
“Well, I bet she’d love to talk to you.”
“No, I’m okay.”
And he seems to be. His enthusiasm for these one-sided conversations always seems genuine, whereas a live phone connection would put him on the spot.
Some of J.P.’s classmates are, as he reminds me solemnly, “nonverbal,” but even those who are verbal, as he is, do not use words with ease or clarity. When he was in seventh grade, I often asked J.P. whether he and his girlfriend du jour, Jessie, ever talked, or if he knew what kinds of things she liked, but he routinely shrugged off my questions. I knew that whenever they laid eyes on each other, they made a seal-like bark that sounded like “Ork! Ork!” and I found myself badgering him: “How can you be friends if you don’t talk? You say you’re in love with her, but you just make sounds at her. You need to talk to her.” Suddenly I heard myself and realized how untrue this was, how untrue even to my own experience. Love takes root in what we feel, not what we know; communication can take many forms other than words. What’s more, every pair of lovers creates their own love talk. Orking is what lovers do.
My mother tells a story of my infancy that has always enchanted me. When my father would walk in the door from work in the evening, I would light up and cry, “Ocky-noony, Daddy-doe,” to which my father would never fail to answer, “Noonynoony, Clarey.” As my mother saw it, our passionate attachment gave rise to a language of our own, unique and exclusive.
Lately, when I come home from work, J.P. comes to the door between the house and garage and calls out, “Who’s there?”
I answer, “Mommy.”
“Mommy who?” he replies. “The girl of my dreams? The one I love?” Tired and weighed down by briefcase and purse, I smile and wearily answer, “Yes,” and he lets me in.
One night he won’t open the door. “What’s the password?” he asks.
Without thinking I answer, “Love.”
“You’re ab-so-lutely right!” he cries.
“Wo-o-o-of! woof! woof!” J.P. is barking like a dog again, a trick he picked up from an eighth-grade classmate who has Williams syndrome, another genetic condition that confers unusual skills of verbal imitation. The two of them, J.P. and Charles, bark back and forth the livelong day, much to their teachers’ consternation. This particular morning, no sooner has J.P. finished barking than he calls out, apropos of what, I have no idea, “Mom, that’s hooligan-ish!” A minute later, “I’m feeling lemur-ish!” My head spins with his jabberwocky—I’m Alice in my own Wonderland, a place that is alarmingly foreign but somehow as familiar as home.
Around this time, I begin a new romantic relationship. One night I do what I have never done since my divorce: I arrange for J.P., who spends most weekends with his father, to spend an evening with my new boyfriend and me. Not just a quick introduction, but dinner and, of all things, decorating the Christmas tree.
My gamble pays off. The evening has a surreal magic that I’ve come to know as my version of motherhood, maybe my version of love. The three of us dance and sing and laugh and even have what J.P. calls a group hug. But the real miracle occurs as I am putting J.P. to bed and tell him to call good night to Stephen, who is in another room. J.P. instead lets out a bark, and, without skipping a beat, from the living room Stephen barks back. My son’s face breaks open in a grin. I know right then that we are understood.
Clare Dunsford is an associate dean of the College of Arts and Sciences. Her essay is drawn from Spelling Love with an X: A Mother, a Son, and the Gene that Binds Them (copyright © 2007 by Clare Dunsford), by permission of Beacon Press.
At home with J.P.
John Patrick Manion—a 22-year-old man with many of the proclivities of a boy—was in the basement when I and BCM photographers Lee Pellegrini and Gary Gilbert arrived at his home, in a Boston suburb, where J.P.—as he’s always called—lives with his mother (and biographer) Clare Dunsford. The basement is a place of refuge for J.P. Sometimes he goes down and turns off the lights, turns up the stereo, and sings along with Wynonna Judd, his favorite country singer; and when he’s done with a song, his mother, up on the first floor of their ranch house, can hear him say in the darkness, “Thank you, thank you very much, ladies and gentlemen.”
Today, however, J.P. was not singing. Anxious at the prospect of our visit, he was hiding out and watching Oprah Winfrey (J.P. is a fan) conduct a television interview with Halle Berry (J.P. is a big fan) about the latter’s pregnancy. “Halle Berry is having a baby,” Dunsford told us as we set up equipment on the patio below her kitchen windows. Inside the house, the basement door opened and slammed back against the jamb, as though the wind was playing with it. “J.P.,” Dunsford called, “is someone having a baby?” The basement door opened again, and J.P. emerged, grinning, head turned to the side as he ambled toward us, like a shy rookie who’s won the game with a homer and now has been summoned from the clubhouse to tip his cap. When he reached his mother, who is a good deal smaller than J.P., he bent to embrace her and tucked his strong-featured face behind her delicate-featured face to hide from the three strangers.
It is difficult to catch J.P. on film. He can little more bear the eye of a camera than the eye of a stranger, and he continually turns away from the lens, startles and raises his hands in protest at the mild flash fill, and in spite of his mother’s gentle entreaties, hides behind a magazine, then a silvery bag of popcorn, then a photograph of his mother, then the magazine again. And while J.P. in repose is a solidly built, handsome young man, the fact is that he doesn’t stay reposed for long. Hyperactivity is his modus vivendi, particularly when he has been forced out of his routine, as by our visit this afternoon.
J.P.’s movements when he’s nervous are quicksilver jolts. He turns his head down or away, he folds up with laughter at the mention of “Rosanne Barr,” he mutters at his mother, he gets up from his chair and walks away, he returns carrying a plush cow, he darts into conversational traffic. “She cuddles, she dances, she weaves, she sews,” he says of his mother, causing her to break up with laughter, and “let’s hit the shower, clowns,” and “lots of beautiful bachelorettes at our new home,” and “What a wimp!”—this last again directed at his mother.
In the universe that has formed under the pressure of J.P.’s condition and needs and the years they’ve spent alone together, mother and child have become twin stars locked together across the space that separates them. She is fully and yet gracefully attentive to his every expression. Asked a question, J.P. looks at her as he answers. If she is not available to anchor him, he looks at the ground.
A visit by three male strangers doesn’t help. (Dunsford had told us that he would probably behave better if we sent young women to the house to take the photographs, but we had none to send.) J.P. critiques his mother’s clothes, makeup, the locket at her throat, while theatrically chastising her with a set of catchphrases: “Those jeans have got to go, honey,” “No way, honey!” “She’s hot!” “As if!” He told us she was getting married—not true. At one point he grew irritating enough that his mother turned to him and said “Stop it!” Looking stricken—literally, as though he’d been hit—J.P. bowed his head and softly said, “Sorry.”
He soon recovered. “My wife is very strict,” he informed us while smiling with theatrical, exaggerated sweetness at Dunsford. “We’re living in harmony,” he said a little later. He is funny when he says these things—he knows well how to be wickedly playful. Dunsford had told us of taking him to a poetry reading a week earlier, where after reading several poems, the speaker said, “This poem is a little bit less,” and then paused to consider his next word, allowing J.P. to turn to his mother and say aloud, “Confusing?”
When we were finished taking photographs on the patio, we went indoors so J.P. could show us his room. On the bed, a magazine with Ms. Berry on the cover lay beside a worn Pooh. We looked at photographs of J.P. at school and of his golden retriever Wynonna, who lives with J.P.’s father, a lawyer in Boston. After a time, J.P grew bored and left us. Are you worried when he’s out of sight? Pellegrini asked. When he was young, yes, Dunsford told us. He was often out of control, she recalled, though he always seemed to know how to keep out of real danger. She told a story of trying to make sure one recent winter morning that he was warmly dressed before he went to school, and he turned to her and said, “Mom, I’m a survivor.”
J.P. was reclining on a sofa in the sunroom eating popcorn with a spoon from a bowl when we emerged. Mixed with the popcorn was mayonnaise and ketchup. “Want some?” he said without looking at us.