Lee knew for a fact that his obituary was already written, by the same reporter who interviewed President Jimmy Carter last fall, shortly after his election. He hoped the headline would be dignified. Lee Foster Adams, conqueror, explorer, detective—dies at thirteen from rare illness.
Sometimes he forgot that he looked like a 102-year-old man trapped in a kid’s body. But then he would catch a glimpse of his reflection or, worse, see how his appearance frightened others. Bony beyond belief, he looked like an Outer Limits alien, his profile as old and cracked as the dead presidents on Mount Rushmore, insides as decrepit as Night of the Living Dead. That’s what Hutchinson-Gilford progeria syndrome did: decayed you from the moment you were born—causing the cells in your body to age at a super accelerated rate. About the same as a cat, but half as quickly as a zebra, and not nearly as fast as a fruit fly or mouse.
He was three feet eight and weighed thirty-five pounds. He had false teeth, heart disease, arthritis, a defibrillator, and was as bald as the bird on the back of a dollar bill.
He was forbidden to chew gum. Dr. Bream at Children’s said he chewed it anyway because he liked to tempt fate and was already living on borrowed time. Dr. Bream said the whole thing, meaning his condition, came about on account of his father’s faulty Y chromosome. You can pinpoint things like that in the lab.
In the whole history of modern times, there’d been only about a hundred freaks like him, with an average life expectancy of twelve. Going on thirteen he was an anomaly. Like the 50 Foot Woman, or Jesus Christ, or Frankenstein.
Lee’s favorite thing to eat was strawberries, and his favorite book was Shane. He liked westerns, but his favorite character of all time was James Bond. If he had to live his life over, he’d be a spy with a capital S, but work for America, not Britain. His favorite gadgets were the spy pen with the ammunition inside and the shoe-phone that Agent 86 had hidden in his heel on Get Smart.
Patrick was Lee’s pet Vietnamese potbellied pig. Lee and his mother, Cass, adopted him from Little Orphan Hammie’s when Lee was five. Patrick was distinctive in his pink-and-white coloring, his well-defined snout, and split hooves that made his hip-wide stance both princely and humble. Most people didn’t realize what good pets pigs make. How they are smart and clean and look almost identical to humans in the embryonic stage. Then the porcine features kick in at about the fourth month, the tail and snout and bacon in between.
Tomas was splayed out on the couch in the next room. He was Lee’s personal Jack and the Beanstalk giant who could carry Lee wherever he wanted when he pretended he couldn’t move. He’d been with Lee’s family for less than two weeks and was a sorry replacement for their old friend Z, who had been with them since Lee was five, but who couldn’t do the job anymore on account of arthritis so bad it locked his elbows and knees.
You’d think Tomas would feel sorry for Lee, but no such luck. Lee could hear Tomas’s heavy breathing against the couch cushions, revving loudly and then quieter, like an old airplane engine too heavy for its weight. This was the end of his two-week trial period. Now it was up to Cass and Lee to decide whether or not to let him stay. Lee was sure Tomas had some horrible secret. If he could find out what it was, he’d be able to expose him and convince Cass to send him on his way.
Lee’s naps had been running longer and longer, as daylight saving time approached and the October light flattened everything into gray. From his room at the far end of a long hall, Lee heard the ric rac sound of TV voices and staggered crookedly, like some geriatric version of Bruce Lee in smelly socks, toward the living room, where Tomas was splayed out like a beached whale watching Who Wants to Make a Deal?
Tomas saw Lee coming, switched off the TV. Looked away quickly, then looked back, having tucked some raw emptiness behind his eyes. Lee blinked, adjusted his glasses, which day by day appeared thicker and more opaque from degenerative cataracts.
“Hey, little man.” Tomas stood, checked his watch. “Two hours. Quite a nap.” He slapped the couch cushion next to him, beckoning Lee closer.
“Como te sientes? How are you feeling?”
At six feet five, with size-sixteen shoes, Tomas Conception was intimidatingly king-sized—way beyond tall, with hands the size of oven mitts. He was born in Argentina, and his heavy accent easily sing-songed into Spanish, though Lee told him a million times he didn’t speak a word. Tomas was the first man to touch the living room ceiling in their apartment with his bare hands, the first to snatch a tomato-colored ladybug off the wall and covet the insect safely in his palm. The highlights of his olive skin were surreptitiously pink, pink nails, pink tunnel of breath leading down into the catacombs of his mouth. When he looked at Lee, his nostrils flared like he smelled something bad. To pick Lee up he needed only his Spartan fingertips and the flats of his palms, and Lee began to feel he was floating on air.
The house in Newark, New Jersey, sat atop a pale gravelly slope on Palisade Road, the ugliest triple-decker on the block, its concrete foundation barnacled in two-foot-high drifts of tar and broken glass. Palisade jagged first south and then north, paralleling Route 9, racing the snail-paced commuter rail all the way from New Jersey to New York. A landfill sat in the distance like an inverted ice cream cone, gulls circling above, marking their turf. Newark was a no-mans-land of factories and trash that few survived but many passed through. In the gray polluted air that replaced oxygen, Cass sometimes said you could lose your name and no one would notice. Sometimes, looking out over the debris of glass and steel, Lee felt like the Lone Ranger in a mask, looking out but never being seen.
At night, the Budweiser Eagle that sat atop the distant brewery was lit up in red, white, and blue neon, its wings appearing and disappearing in a caged attempt at flight simulation. Rahway Avenue boasted an Italian restaurant, movie theatre, pawn shop, check-cashing window.
The only reason they lived here in this revolving door to nowhere was because of Lee’s mother, Cass, who at thirty-eight had been working as a makeup artist for a lot of off-Broadway shows since before Lee was born. And there weren’t that many apartment buildings in the city that took pigs unannounced—no matter how clean you said they were.
From their vantage point on Palisade Avenue, Lee and his mom had a distant view of the red and yellow squares of light that made up Times Square, Cass’s home away from home. Right now, Cass was working on a rip-off of Cabaret, the one that originally starred Liza Minnelli and Joel Grey. She was slim and elegant and petite and wore short skirts and no makeup at all. Her lemon-yellow hair spiked up in front like duck fluff. In the morning when she woke up she looked clean as the sunrise, without a worry in the world. That was the theatre for you, learning how to put on a good face.
Cass was probably meant for something great, but instead got stuck with Lee. Before he was born, she worked on all the feline expressions in Cats down to the tails and whiskers and ears. Before he was born, she had a hand in designing Cyrano’s nose and the mask for the Phantom of the Opera. Lee’s father, Neil, a mere blip on the radar screen, was chief flavor-mixer for the Dip and Sip ice cream factory two hundred and fifty miles away in Lynn, Massachusetts. And he didn’t live with them anymore. On account of Lee, and how stressful it was to live with someone who was always on the verge of a life-and-death crisis. Cass thought Lee’s quirks made him colorful, which was another way of saying that she would love him no matter what.
Because Lee was a geek in dwarf’s clothes, he wasn’t allowed to be left home alone all day. He didn’t need a babysitter and didn’t wear diapers, but he was kind of weak and stopped going to school last year and had to be reminded to take all the medicines. There were nine different kinds of pills. His pipes were sluggish as sludge.
Tomas was not a certified nurse’s aide, but he was trained in CPR. Lee wasn’t sure he was trustworthy yet, not sure he’d ever become a friend. But Cass said they’d suspend belief these two weeks and give him a try. He had that sing-song accent that made it hard to take his words seriously. That jingle-jangle stuff that came in waves.
One thing about Tomas that was different, though. Usually, when people first met Lee he’d be the object of pity or buried eyes. When Tomas met him, he didn’t blink or look away. Just locked eyes with him like he was reading the stony letters off an abandoned tombstone.
The only thing Lee and Cass knew about Tomas was that he claimed to have written for some kind of newspaper back in Buenos Aires, and before that played some pretty serious ball. But he didn’t make it to the majors. Said his coach forced him to throw too many curve balls too young and mucked up his arm.
Lee stopped going to school last year in the seventh grade. He couldn’t make it up the stairs without getting palpitations. His would-have-been-almost teachers still sent books home. Mr. Deruda in particular sent poetry and plays. When Lee was reading Oedipus Rex by the Greek playwright Sophocles, and the riddle came, the one with the Sphinx—who crawls, then walks on two legs, and then three—he put the book down in a flash and knew right away that the answer was an old man with a cane, on account of he used one sometimes.
But even more than the Greeks, all the really important information in the world that had to do with death and dying seemed to be written in Latin. All the medical terms like morbid and morbidity and necrosis. But American history was Lee’s specialty. His one true hero was Ben Franklin. He had a framed replica of Ben’s autograph and had memorized the immortal shape of his brow, both head-on and in profile. He had a picture of the first flag of the Continental Congress that Betsy Ross sewed in 1776. And he’d read all the true stories about George Washington and Paul Revere and Sam Adams. They were to seventeenth-century America like Einstein and the Beatles. But all of them, though famous, were rife with human flaws. Sam Adams was afraid to ride a horse, Ben Franklin, famous as an American, was something of an expatriate and lived almost half his life in Paris. George Washington had wooden teeth, Paul Revere was just in the right place in the right time. Lee kept his early-American-history paraphernalia on exhibit on the shelves, including a model of George Washington’s wooden teeth and a copy of the Gutenberg printing press. He liked to imagine the time it took to put the letters of type in one by one. What he liked most about Ben was that he never gave up, not once, ever. What he didn’t have, he managed to invent—from bifocals to the postage stamp. He could have probably done anything, even changed the direction of time.
Lee didn’t exactly have a pen pal, but he did have friendships with people who didn’t live with them and were hard to define. Number one, at Children’s Hospital in New York City, was Dr. Bream, who first diagnosed his condition and was in charge of keeping him alive as much as possible from the point of view of science. On Thursdays, they took the train to Dr. Bream’s office for a weekly check-in, where he’d measure Lee’s height and weight and vital signs. He sat pale-eyed and droopy at his desk in front of a wall of color photos of red-and-white-striped sailboats parading behind him on choppy blue seas. While to the left, out the window, the aluminum-colored lightning rod of the Chrysler building conspired to make him smaller than a flea. Then he tap, tap, tapped his pencil on the wooden desktop and smiled at them and blinked, but had no words of encouragement. Sometimes, when he was there, Lee couldn’t help but look Dr. Bream in the eye and worry about how he was going to feel when he was gone. Cass, too.
But Dr. Bream gave Lee a gift no one else could have thought of. Kira Throop was Lee’s soul mate, his would-be sort of girlfriend if adults ever saw fit to leave them alone for more than five minutes at a time. Dr. Bream introduced them nearly a year ago, seeing as they shared the same disease. Kira was slightly older and slightly smaller, slightly better in every way. Besides being completely bald, at three-feet-seven-inches tall, she was far prettier than Lee and would tower over Thumbelina. For Kira’s thirteenth birthday this past May, he made her an angel cake in the shape of an angel, without any candles. There was no use in counting when your birth certificate said one thing but your body said another. They celebrated in New York City in her parents’ posh apartment. There was no such thing as privacy when your excrement was charted on a graph and your vital signs were recorded three times a day. Kira was the first person Lee talked to on the phone in the morning and the last person he talked to at night before going to sleep.
Besides having friendships and responsibilities, Lee had schoolwork to do at home that was sent to some mostly anonymous nobody in front of an empty desk at the New Jersey Board of Education. Lee wrote the phone number on the back of his hand and tried to call several times in an hour last week just to check who it was his homework was going to, but no one answered the phone in Trenton. He imagined there must just be some mannequin in a wig. They needed to know he was still trying to learn on a regular basis or they’d throw Cass in jail.
For Lee’s English requirement this year, he decided to write a biography of Ben Franklin, seeing as Ben naturally understood some of the most important things on earth: how to see with bifocals, how important lightning is, the importance of the Gutenberg printing press, and, as ambassador to France, the singular delectability of the pastry called the Napoleon.
“Time for vitals, my man,” Tomas said now, robotically, like if he’d said it once he’d said it a thousand times. Lee was knee-deep in parchment paper and rumors of Tories and thinking about King James and the ego he must have had to submit to having his name on the Bible for all eternity. Tomas talked to him while looking out the window to some distant point in time. Lee sat next to him and smelled his evergreen scent, his salty sweat soaked into the pits of his T-shirt like old dried tears. Tomas unrolled the blood-pressure cuff from a soft black case tied with a string, and Lee hoisted his sleeve and sighed as Tomas pumped and listened to the hiss of histolic blood gases as they swelled and released. “One-forty over eighty,” he mumbled and wrote it down on the chart. A crooked pinky was flipped up on the outer angle of his left hand where the joint must have been broken in childhood and never reset itself right. He handed Lee a glass of water with five different colored tablets. Afternoon candy. Lee gulped them down one by one, trying to be a good sport, trying to entertain himself by wondering what form of bad behavior could drive Tomas away, wondering exactly what that would take.
“What’s up, my man?” Tomas said, brown eyes woozy in the late afternoon light. “Come.” He said it almost in slow motion like he’d set the word to hover on a cloud. He got up and carried Lee sideways across the room, then set him down easy on the sofa between two ripe goose-down pillows.
If Z were here, they’d be playing Monopoly on a board cluttered with a zillion houses and hotels, and one of them would be down on his luck while the other would be cleaning up and being smug about it, lording it over the other over who owned Broadway and Park Place. Sometimes Lee thought he was the most clueless boy on earth, the only twelve-year-old without a sexual thought in his mind, except for the fact that he tried to peek under Kira’s shirt when she bent down to pick something up. So far, the closest thing he’d seen to a naked woman was Cass in a nightgown or underwear ads in the Times. If he were a normal boy he’d be loitering outside the house avoiding homework, or shooting hoops, or trying to hide something from an adult, or telling out-and-out lies.
But he could barely think of those things. It’s not that he was worried about dying. Sometimes he thought dying would bring him to some home away from home. Like coming back to Earth after a hazy trip to Mars.
“Gin, anyone?” Tomas said now, holding up the deck. They were sitting in the living room watching the clock, counting the minutes before Cass would return. Tomas nodded his Buddha nod and shuffled the cards in a pleated accordion way. Lee wasn’t much of a strategist, was no good at games, but had become a fearless gambler on account of having nothing left to lose.
“OK,” Lee sighed, putting down his pen and closing his book. “Seeing as you’re not going to take no for an answer.”
Tomas shuffled, then dealt. Less than five minutes later he flipped up his hand: three jacks, four queens, a trio of tens, and Lee was done for.
“Man,” Lee said. “How’d you do that?”
Tomas shrugged, reordered the cards. “Got lady luck on my side, I guess.”
Lee looked up into Tomas’s face, where his last breath paused so long Lee thought he had begun to take a permanent leave of absence. A thin red scar skimmed the edge of Tomas’s neck where it peeked out of the collar of his dingy white shirt. The shade of red that Betsy Ross first used for the American flag.
And now Lee got the nerve to ask what it was he’d been thinking about since the first day Tomas showed up for work.
“Do you mind if I ask you how you got that scar?”
Lee eyed it steadily, resisting the urge to run his finger along its zippered side. Since it looked like they may be stuck together for a while, over the past few days Lee had been trying to narrow in on any hidden secrets Tomas might have and had been doing his homework on Argentina. Bits and pieces of news articles were daily scattered through the Evening Ledger and New York Times that didn’t make sense to him yet, about something called a Dirty War, which you would think was about people who were in need of better hygiene, but as far as Lee could tell was about innocent people being abducted off city streets for crimes against the government.
More than anything, Lee wanted to know if Tomas had been blindfolded and taken prisoner if he had used a gun, or worse—had been fired upon.
“Well, that’s a story for another time,” Tomas said.
And if Lee hadn’t needed him so much, he would probably have jumped up and down and demanded immediate answers to his questions, along with “Who are you? How can you take care of me, the Elfin Head, Chicken Man?”
“Time out,” Lee said to Tomas, whose legs seemed to be twice the length of his torso.
Tomas was stirring some instant chicken noodle Cup-a-Soup in the kitchen in an ochre mug. The smell was worse than old socks stirred with garbage, and Lee felt weak and wanted to puke.
He teeter-tottered back down the hall to his room to check on Patrick. Patrick slept even more than he did. He was slovenly by nature but had never to Lee’s knowledge been sick. Sure enough, he was asleep on top of the red knitted shawl with white fringes that Cass made for him, asleep like a king.
Lee closed the door to his room, where the shapes were made of angles of one kind or another. He liked shapes that had right angles. Right angles were like happy endings. They felt complete. Circles didn’t have angles, but you could wrap your head around them as many times as you wished and could estimate that the diameter would be about one-third the circumference. That’s what pi was for.
Lee’s journal was on his bedside table. The one Dr. Bream at Children’s asked him to keep. Dr. Bream said Lee was going to be famous one day. Said he was such an anomaly his treatment was on the house. He asked Lee’s permission to write a book about him, which was how President Carter’s reporter had contacted him, and he took Lee’s picture every week in order to watch him drying out from the inside like a prune. OK, why not? Lee had said. It was hard to keep the journal up. It was only a matter of time. He knew one day soon he’d have a heart attack or die in his sleep, and his story would end in the dry white space where the ink stopped.
Sometimes he resented having to write in it, but other times it made him feel worthy. It was also part of the deal they had made, part of why his medical treatments were on the house, and why Cass didn’t have to work two jobs. He was supposed to write the truth about what he felt inside. But as far as he could tell, there weren’t any words created that could say why he was on this treadmill with time, or why his collarbones were disintegrating like limestone, or why his spine felt like a brittle trail of broken teeth.
In his journal he kept a list of things he wanted to do before he was gone:
Visit Washington, D.C., and stand on the steps of the Capitol
Ride in a hot air balloon
Taste chocolate fondue
Trail a beetle under a dung pile
Earn a Boy Scout badge for spelunking
Lee deposited a rawhide bone in front of Patrick’s nose, and he sniffed it lazily but remained asleep. He was a companion, but not a patriot.
Lee went back down the hall, where Tomas was waiting, his body stretched out like a crocodile but nowhere green.
“Poker?” Tomas asked, holding up the cards.
Lee looked skyward, checked his watch, and speculated on how many games he’d have to play before Cass was due home just past six.
They walked down the long hallway to the living room. Lee sat on a big pillow so he wouldn’t scrape his sacrum bone and started gambling big like there was no tomorrow.
“Hey little man, you always play like a high roller? Gonna risk it all?”
It was only two weeks, and Tomas thought he knew him inside out. Well, hold on, buddy, I’ve got some news for you, Lee thought. It was up to him if Tomas lived to collect another paycheck.
Lee laughed and shook his head, cause he would never give in. Tomas could chase him to Timbuktu, and still he would outlast him. Mostly because Lee had nothing to lose.
“What do you think?” Lee said. “Think I’m gonna give in to a loser? Hit me,” he said and asked for two more cards. He smiled faintly and held his cards higher, imagining what it might be like to have a real father. How if he had been Tomas’s son, Tomas would have probably squished anyone like a bug who even smiled at him crooked.
“What’ve you got?” Tomas asked, leaning forward from the bottle-green sofa cushion. The one gold tooth at the back of his mouth caught the light. His body gave off an unrivaled amount of heat, and Lee couldn’t help thinking how in another time he could have been the gladiator at the wall of a gated city.
Lee was looking down at his cards for too long. He sensed Tomas was ready to fold but trying not to give it away. Lee had three kings, four queens, and suddenly picked up two more aces, and was in the catbird seat.
“Gin,” he said, laying his cards down in a fan.
Lee got up wordlessly, leaving Tomas there, his mouth open. It was already late afternoon. Outside, the wintry street was quiet, the familiar houses disappearing in a diminishing row of soft gray roofs clear to the vanishing point. Like the soft gray color that filled the concentric reverberations of an echo, like the lost sound of a voice you had to strain to hear. Made him think that time wouldn’t wait, that we were always on the verge of disappearing.
If you were going to be in a race with time, you ought to be able to choose it, he thought, not have it choose you.
“Rematch?” Tomas asked.
“Not today,” Lee said, collapsing next to him, intent on trying to discover where that long scar began and ended beneath his clothes. Lee had scars across his chest where he’d been invaded by heart attacks and mild strokes and wires connecting him to electrodes that depended on energy we relied on but could never actually see. And he thought how Ben Franklin really had something when he showed us electricity, and how Sir Isaac Newton was right to risk it all with his belief in the planets being juggled in space, belted by gravity. And soon he was exhausted from thinking of all the ideas that existed in the world and held its structure in place because for him time was different. He didn’t live within its rules.
“Guess I win by default then,” Tomas said, gathering up the cards.
“No one ever wins by default,” Lee said. “You only win by proving yourself the better opponent.”
Furious, Lee took a sip of water and began to choke. And was surprised by how quickly Tomas caught him and expertly pounded out the air bubble in his back. He eased back on the cushions, continuing to breathe, and tried to remember the name of that disease where people nearly killed the ones they loved and then rescued them just in the nick of time. It came to him: Munchausen by proxy.
Then Tomas leaned perilously close to his face, quickly out of bounds, and Lee could see the porous holes in his face scarred from acne and cross-hatched with lines at the edges of his eyes where the sub-equatorial sun had shown no mercy.
“Lee,” he whispered. “Escuchame,” he said urgently, lapsing into Spanish. “You might think I don’t understand, but I do.” He tapped the hollow cavity in his chest. “Estoy aqui por ti, I’m here for you.” His eyes glazed, and Lee felt all gravelly inside. And it was like he could see the tiny bits of static electricity hanging in the air, but they were really dust particles.
“Lee,” Tomas said, pulling back, “I’m sorry if I offended you. I was just trying to tell you that there are things I can understand that you might not imagine, things I might be able to help you with. In my country, things can get out of control. And people do things, and the world goes crazy. You’ve got to feel a thousand years old inside sometimes with your condition, and maybe you think you’d like somebody to talk to. Somebody other than your mom or your doctors.”
“Jeez,” Lee said. “Let’s not go crazy. All I did was drink water a little too fast. And I’m not exactly alone, anyway,” he said defiantly, the heat of embarrassment moving up his neck. “Despite what you think,” he said, standing to face Tomas. “And you don’t need to feel sorry for me either,” he said, his voice rising to a tremble.
“I have friends and a life and a girlfriend, for Christ’s sake. Kira Anastasia Throop is my number-one best friend outside of Cass and Z, on account of she has Hutchinson-Gilford like me, though she is in technically six months older and a lot better looking! And Kira and Cass and I are going on a trip to D.C. and Philadelphia, just the three of us, right before Thanksgiving. You’re not invited. We’ve been planning it for months. If you actually manage to keep your job, I’ll introduce you to Kira and show you our itinerary. Her parents are too old to come, much older than Cass, so it’s just the three of us going on the road. Kira’s practicing to be a ballerina and has seen Nureyev and the Bolshoi. She can plié and pirouette just like in the movies.”
Tomas looked hurt, and Lee felt momentarily ashamed.
He was quiet for a minute, looking down at Tomas’s shoes, the weight of his feet, which looked like pale red bricks tied to strings.
Donna Gordon, author of “What Ben Franklin Would Have Told Me,” is a writer from Cambridge, MA. She graduated from Brown University and was subsequently a Stegner Fellow at Stanford, a PEN Discovery in New England and a Ploughshares Discovery. Some of her fiction, poetry and essays have appeared in Tin House, Ploughshares, the Boston Globe Magazine, Story Quarterly, The Quarterly, Poetry Northwest and Post Road. She was a finalist for the 2016 New Letters Alexander Cappon Prize in Fiction and received honorable mention from Glimmer Train in 2016 and 2017. She was a 2017 Tennessee Williams Scholar at the Sewanee Writers’ Conference and a fellow at the Vermont Studio Center in 2017 and 2018. Her work with Amnesty International culminated in “Putting Faces on the Unimaginable: Portraits and Interviews with Former Prisoners of Conscience,” with photos and captions exhibited at Harvard’s Fogg Museum and other Boston locations. This experience with former prisoners of conscience fueled the writing of What Ben Franklin Would Have Told Me.