The Boy Who Loved Too Much

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  Contents

  Epigraph

  Author’s Note

  Preface

  One Unlocked

  Two Diagnosis

  Three Putting Williams on the Map

  Four Milestones

  Five A Genetic Street Lamp

  Six Eli Turns Twelve

  Seven Elves on Earth

  Eight School

  Nine Missing Genes, More Personality

  Ten People Like Eli

  Eleven Eli Goes to Camp

  Twelve Learning Curve

  Thirteen The Note Home

  Fourteen Treating the Friendliness Disorder

  Fifteen Eli Turns Thirteen

  Sixteen What the Future Holds

  Seventeen Progress Report

  Eighteen Where the Hugging Never Stops

  Nineteen Tough Love

  Twenty Confrontation

  Twenty-One Born to Be Kind

  Twenty-Two Science Class

  Twenty-Three Graduation

  Epilogue High School

  Acknowledgments

  How to Get Involved

  About the Author

  Bibliography

  For my parents, Chuck and Carole, who believe that differences are what make people cool

  “We got a future. We got somebody to talk to that gives a damn about us. . . . Because I got you to look after me, and you got me to look after you, and that’s why.”

  —John Steinbeck, Of Mice and Men

  Author’s Note

  The narrative that follows is based on my immersive observation and reportage. For moments in the past, and for those I was unable to observe, I relied on extensive interviews to re-create scenes that were factually accurate. I have changed some names and identifying characteristics, including for Eli and Gayle, members of their family, and the people in their community, as well as for others with Williams syndrome and their relatives. I have not changed the names of Williams clinicians or researchers.

  Preface

  The first time I met Eli, in the late winter of 2011, he was waiting for me at his front door. Gayle had told him to expect a visitor: a writer who wanted to observe him “in his natural habitat,” as Gayle put it. She always waited to deliver exciting news like this—a guest!—until the last possible moment, so the anticipation wouldn’t overwhelm him. Still, Eli had been restlessly awaiting my arrival for the two hours since he’d gotten home from school.

  At first, all I saw were pudgy fingers wrapped around the door, which was open just a crack. I heard Gayle’s command: “Do not go out there, Eli.” An eyeball appeared in the crack between the door and its frame. It bulged wide when it saw me. Then the baby-faced boy, who had just turned twelve, flung the door open. He rubbed his palms together, beaming as if he were about to open a Christmas present. Then he waved frantically, as if I might not have noticed him and might simply turn and walk away. “Hi, Kenny!” he bellowed into the snowy parking lot of his apartment complex.

  Eli spoke with exclamation points: earnestly and emphatically. His voice was deep and loud—a man’s booming baritone—but cheerful and childishly nasal.

  I heard Gayle’s voice again, in a stage whisper: “Her name’s Jennie.” He corrected himself without pausing, without embarrassment. His smile never faded. “Hi, Jennie!”

  The greeting was comically hyperbolic, yet Eli radiated sincere, earnest warmth. Meeting me truly was as exciting as opening the biggest present under the tree. I reminded myself, before my ego swelled in proportion to Eli’s enthusiasm, that meeting anyone was this exciting for him.

  * * *

  WHEN I FIRST HEARD OF Williams syndrome, it had been described to me as a “cocktail party syndrome” that made people socially fearless, quick to greet strangers and to strike up a charming conversation laden with compliments and endearments. Fascinated, I began searching for more information about the disorder. I came across a news story that called people with Williams syndrome indiscriminately loving and “biologically incapable of distrust.” Another account dubbed Williams “the anti-autism”: a genetic fluke that stripped one in every 10,000 people of the inherent wariness, skepticism, and inhibition that were hardwired into the rest of us—especially introverts and New Englanders, both of which I happen to be.

  Initially, I felt partly envious of this social ease and partly indignant that our conformity-loving culture saw fit to label it a disorder. Who are we to tell them they’re doing it wrong? I thought righteously, concluding that, in another time and place, people with Williams would have been canonized as saints, not diagnosed with an illness. If they love and trust everyone unconditionally, I thought, maybe they’re the ones doing it right. Maybe it’s the rest of us who need treatment.

  As a journalist, I felt driven to probe more deeply. I wanted to know what Williams could tell us about the genetic basis of our personalities. How could a flipped switch that shuts off about two dozen genes—a tiny twist of the 20,000 or so genes that form a DNA strand—make us inherently loving, trusting, and outgoing? And why wasn’t that our default mode?

  The more I came to understand Williams syndrome and to meet a wide range of people who had it, the more I saw that the social impulses that partly defined the disorder weren’t so clearly a gift. Their unique combination of gregariousness and guilelessness exposed a paradox in Western culture: we say we like extroverts, but when an extreme extrovert comes barreling toward us with open arms, we shy away. It’s not just warmth or openness that we value; these traits must be coupled with a more sophisticated sense of when to turn them on and off. People with Williams syndrome never turn them off. They have the social drive but not the cognitive ability to use it effectively.

  With their unconditional love for humankind, people with Williams seem to come closer than any of us to what religious leaders, gurus, and self-help authors tout as an ideal. But the truth is more complicated. The response I’ve seen to people with Williams has ranged from warmth to amusement to pity to contempt. Reverence rarely makes an appearance. Nor do their overtures of friendship tend to meet with genuine reciprocation. The cruel irony of the disorder is that the very people who crave social connection the most aren’t well adapted to get it. Their insatiable drive to connect is, in itself, what ultimately pushes people away.

  If not a model of behavior, then, Williams struck me as a lens that magnified some of the fundamental challenges of being human. All of us risk being taken advantage of to some degree, but what would it be like to go through life this irremediably vulnerable, biologically unable to peel your heart from your sleeve and lock it safely inside? All parents fear for their kids’ safety, but what would it mean to be the parent of a child who lacked the defenses most children come by innately? The disorder exponentially increases a parent’s normal anxieties and exaggerates one of the universal perils each of us faces: the danger of opening our hearts only to be met with rejection or exploitation. Maybe that’s one reason why some of us inwardly recoil when we see people with this condition. They hold up a mirror to the part of ourselves we’re trying our best to conceal: that utterly defenseless, deeply tender inner part that yearns for connection and kindness—and can so easily be crushed.

  In 2012, after becoming
immersed in the world of Williams and establishing myself as a fixture in the lives of Gayle and Eli D’Angelo, I attended the biennial Williams Syndrome Convention in Boston, where I joined a group of first-timers—parents whose children had recently been diagnosed—at a bittersweet “welcome lunch.” By then I knew enough about the disorder—which typically entails moderate intellectual disability and serious health complications along with the social symptoms—to recognize that Williams was not simply an invitation to an endless cocktail party. So did the parents, many of whom stared red-eyed at plates of lukewarm pizza. Their babies, meanwhile, cooed at everyone they saw. Toddlers tore across the mauve carpets to hug new people, while older children greeted each other exuberantly.

  Karen Levine, a developmental psychologist who specializes in Williams, stood at the front of the banquet hall, working her way through a PowerPoint presentation about the disorder. Although she runs a busy private practice and teaches at Harvard Medical School, Levine gives off an easygoing, carefree energy. She smiled warmly as she delivered a speech that was part pep talk, part primer—a version of the talk she’d once given Gayle, who had brought Eli to her office for an evaluation when he was four.

  Levine hoped the last slide of her presentation would offer some perspective, or at least some comic relief, to the roomful of dazed parents. In it she offered a clinical diagnosis for a little-known disorder called TROUS: The Rest of Us syndrome. Seen from the perspective of someone with Williams, this disorder includes traits such as extreme emotional distance, pathological suspicion of strangers, and a critically limited capacity for hugging.

  Although I had come to accept that Williams syndrome was justifiably labeled a disability, I was gratified to hear Levine echo my initial sense that the world would be a kinder, gentler place if people with Williams formed the majority, and the rest of us were the ones with a rare clinical disorder.

  “These people very rarely say ‘I love you,’ ” Levine noted of TROUS sufferers, still channeling the Williams worldview. “They might only say it a few times a day.”

  * * *

  ONCE I ENTERED THEIR APARTMENT that first day, Eli hugged me twice, then stepped back, catching a look from Gayle. I could see little resemblance between mother and son. He was short for his age and pudgy, his face all cheeks and dimples. His thick lips parted into a toothy smile so wide it forced his cheekbones up, squeezing his narrow eyes nearly shut. His curly brown hair was tousled, with tufts that stood on end, giving him a wild look. Gayle, on the other hand, was impeccably put together, with raven hair framing pale skin and features more refined than her son’s. Her almond eyes were outlined strikingly with dark eyeliner, her lip gloss applied just so. She greeted me calmly, a model of reserve to whose example Eli was oblivious.

  She offered to take my coat, which I had to pass over Eli’s head, since he was anchored to the spot just in front of me. He squeezed my hand and pumped it like we had just signed a million-dollar business deal.

  “Hello!” he chirped. “Nice to see you! I like your shirt!”

  He was instantly enchanting, even to someone like me, who is not easily enchanted. I am certainly not much of a hugger. I can count the number of times I’ve hugged my own grandmother on a single hand.

  Gayle ushered me over to a mint-green couch, where I sat with my notebook on my lap while Eli hovered nearby, never sitting, interrupting our conversation with bursts of chatter. He was in constant motion, a garrulous hummingbird. His conversation was a jumble of questions.

  “How’d you sleep? You have a dog? Where’s your dad?” He made direct eye contact, but barely paused to listen to my answers. His mind was already racing ahead to the next question, his plan apparently to prolong our interaction by rapid-fire interrogation rather than with a leisurely back-and-forth dialogue.

  The thrill of entertaining a guest, coupled with Eli’s natural hyperactivity and short attention span, propelled him into a whirling flurry of activity. He banged plastic food-shaped toys together atop a wooden butcher block in a corner of the living room, reenacting the role of Iron Chef’s Masaharu Morimoto, his second-favorite TV personality. He was half watching the TV, which played an episode of Sesame Street that he had rewound to the segment featuring Cookie Monster (his favorite TV personality). He tumbled a plastic hamburger patty in a plastic bowl and announced that he was making cookies. He sang as he cooked. As I later discovered, he sang constantly, all day every day. At the moment it was a hit by the Commodores.

  “ ‘She’s a BRICK [pause] HOUSE.’ ”

  When I seemed distracted by the hubbub, Gayle laughed.

  “Oh, you’re probably not used to all the background noise,” she shouted. “I usually just yell over it.”

  Eli buzzed over to the couch, offering me an imaginary cookie. “I love her,” he announced to Gayle as I pretended to eat the plastic burger-cookie.

  “Oh, that’s nice,” she said with a good-natured smile and the practiced air of someone who was used to hearing declarations of love.

  * * *

  IT WAS EASY TO FALL in love with Eli. Once you got to know him, it was also easy to see how his endless capacity for love could put him in danger. Gayle worried about his well-being whenever he was out of her sight, which, apart from school, was hardly ever. She didn’t let him outside to play in front of their apartment, to socialize with the other boys who ran wild around the common spaces. Even though Eli craved social interaction above all else, Gayle couldn’t justify the risks, from bullying to the physical and sexual abuse that people with Williams are uniquely susceptible to.

  “I wish I could let him, but I just can’t,” she told me.

  While Eli’s safety was Gayle’s foremost concern, it wasn’t her only worry. Assuming Eli made it through childhood unscathed, there was the question of what kind of adulthood he would have. Would he be able to master the skills necessary to live alone? Could he achieve some measure of independence? Would he be able to protect himself from exploitation? Could he ever overcome the endless urge to hug everyone he saw?

  At twelve, Eli was on the cusp of a critical transition. When he entered adolescence, he’d be expected to establish himself as a person apart from his mother, make his own friends, and begin to forge his own way in the world. But as he baked pretend cookies in his pretend kitchen, he seemed more like a toddler than a tween, with no trace of the sophistication he’d need to navigate the typical world of teenagers—a world in which hierarchies were established, cliques were formed, and rivalries could be cutthroat.

  Eli, earnest and artless, seemed destined to land at the bottom of the adolescent social order, where he’d be an easy target for those at the top. And while he gave no thought at all to climbing the social ladder, he eagerly wanted to make friends. So far, his attempts to do so had mostly fizzled. Most of the kids he knew at school were nice enough to him, but they didn’t invite him over on the weekends. In his special-needs class, he had too little in common with the other students—none of whom had Williams—to establish a meaningful rapport. To make the connections he coveted, he’d need to develop some of the social tools with which most of us come pre-equipped. Whether or not he could do so would mean the difference between being an active member of the human tribe or living a life on the margins, facing an especially acute loneliness.

  After this first night in Eli’s company, I went on to spend three years shadowing him and Gayle, documenting their individual journeys as well as the immense bond that united them. As I watched Gayle care for her son during the most difficult years of both of their lives, she became, in my mind, the hero of a war on two fronts: one, the battle to keep Eli safe; the other, to help him achieve his full potential. On both fronts, she fought with a ferocity born of boundless love.

  * * *

  WHEN ELI GREW TIRED OF making cookies, he begged Gayle to draw a picture of Cookie Monster. She humored him, although similar portraits of the Muppet, done in blue crayon, were already scattered throughout the living room. When
she finished, Eli reacted with the delight of someone who had just been given a signed Picasso.

  “Oooh,” he said. He took the paper from her and grasped it tightly, crumpling the edges in his fists. Then he began to sing again, switching from the Commodores to “ ‘C’ Is for Cookie.”

  He remained cheerful until it was time for me to go. He seemed surprised to learn that I was not spending the night—that our friendship would be interrupted. His face fell.

  “You’re leaving?” he asked plaintively.

  I told him I’d see him again. He smiled.

  As soon as I had stepped across the threshold, he called out, “I miss you!”

  One

  Unlocked

  Gayle didn’t know where to turn. She had been driving east for hours on an unfamiliar highway (I-80) in an unfamiliar state (Pennsylvania), searching with increasing desperation for a place to stop for the night. She had been checking each exit since 9 p.m. But every reputable hotel from Clarion to Punxsutawney had been booked full. Now it was past 11. She tapped her crimson fingernails anxiously on the steering wheel.

  Twelve-year-old Eli was scribbling with crayons on a notepad in the backseat. His crayons were the fat kind that kindergartners used; Gayle bought them because they were easier for him to grip than the slender version. He clutched a red crayon tightly in his fist and drew furious circles, throwing his full weight into the task. Then he lifted the crayon from the page and stabbed it rapid-fire—a manic pointillist creating a fusillade of dots. A few tore through the paper. He lifted his artwork and admired it in the dome light, which Gayle had left on for him. He chirped with glee, smiling to himself. Then he selected a blue crayon, bent his head over the notepad, and began again. As he worked, he sang a selection of hits from Disney’s Lion King. Every few minutes he asked enthusiastically, “When are we gonna get to the hotel?”