by Alex George
“Thank you,” I breathed.
“Don’t thank me,” said Mr. Pritchard. “Go and thank Nathan Tilly. If he hadn’t made such a ruckus, then Hollis never would have been caught, and you’d still be in the same predicament.”
I nodded and pushed open the classroom door, still blinking in wordless astonishment. Hollis was gone! I couldn’t believe it.
Nathan was already at his desk, his hands resting calmly on the table in front of him. I slid into the seat next to him and told him the news. The words were no less amazing when I heard myself say them out loud. “Hollis is gone.” Hollis is gone. Nathan greeted the news with almost as much jubilation as I did.
“That’s amazing,” he said.
“It’s because of you,” I said.
Nathan waved this away but couldn’t help grinning. “My dad wants to take us out for ice cream this afternoon, like he promised. If you walk home with me after school, he’ll drive us back into town. He can drop you at your house afterward.”
“Where do you live?” I asked.
“Out on Sebbanquik Point.”
Sebbanquik Point was a small promontory just north of town that edged into the dark waves of the Atlantic. It was a bleak, isolated spot, covered with tall pine trees. Sometimes I bicycled out that way.
My mother would be busy with Liam. She wouldn’t notice if I was late getting home.
“That sounds great,” I said.
—
IT WAS A WARM AFTERNOON. When school ended Nathan Tilly and I slung our backpacks over our shoulders and trudged out of the school gates together. We walked in silence for a little while. The road out to Sebbanquik Point was a narrow lane that had only recently been blacktopped, lined on both sides by tall banks of hedgerow. At the crest of a hill, the ocean came into view for the first time. We stood there for a moment and watched the whitecaps of the waves as they rolled toward the shore. Overhead a couple of gulls hovered, motionless in the air.
“I like it here,” said Nathan.
“Why did you move to Maine?” I asked.
“My dad has always dreamed of being a lobster fisherman. Like, ever since he was a kid. He finally convinced my mom to move, so we came here and he bought a boat.”
“What did he do in Texas?”
“He worked in an office.”
“That’s quite a change,” I said.
Nathan nodded. “He’s grown that beard since we got here, too. He wanted to look more like a sailor.”
“How’s the fishing going?”
“Well, that depends how you look at it,” said Nathan. “He never catches much. In fact he hardly catches anything. But he loves to check his traps every day. That makes him happy.”
My parents knew several lobstermen who went out onto the ocean each morning before the sun came up, rain or shine. They were sad, hard men. I wondered what they thought of the cheerful amateur from Texas with his sailor’s cap joining their ranks.
“What about your mom?” I asked. “Does she like it here?”
Nathan kicked at a stone and sent it skittering into the shoulder. “She misses home,” he said.
“You have any brothers or sisters?”
“No, it’s just me and my parents. What about you?”
“One brother.”
“I wish I had a brother,” said Nathan. “It would be fun to have someone to mess around with on the beach.”
“Liam doesn’t go outside much,” I said.
“Why not?”
When my brother had first been diagnosed, I had been too young to be able to pronounce the name of his disease. Those long, alien words were foreign and frightening on my tongue, each complicated syllable freighted with menace. Now I would not say the name out loud, even though I could. To name it was to acknowledge what we all knew to be true, that eventually it would win.
“He’s pretty sick,” I said.
“That’s too bad,” said Nathan.
I remained silent. As usual, talking about Liam had drawn all words out of me.
We turned a corner, and Nathan pointed. “That’s our house,” he said. Up ahead stood a solitary two-story building, its silhouette framed starkly against the vast expanse of pale northern sky behind it.
Two-thirds of the way along the roof, Nathan’s father was perched on the shingles, one foot on either side of the apex. He stood perfectly still and appeared to be looking out toward the ocean. On his head was the sailor’s cap that he’d been wearing the previous afternoon.
“What’s your dad doing on the roof?” I asked.
“Can’t you see?” said Nathan. “He’s flying a kite.”
I scanned the sky over the house. Finally I saw it—way up high, a flash of scarlet. The line between the tiny lozenge of color and Nathan’s father was invisible, but their perfect and total stillness mirrored each other so precisely that it was impossible that they were not connected. But Mr. Tilly had not glanced at the kite once. His gaze remained turned toward the ocean.
“Come on,” said Nathan. We began walking.
As we got closer, Nathan shouted, “Dad!”
Mr. Tilly turned in our direction. He looked down at us and raised his arm in greeting. As he did so, he slipped. His body lurched sideways as he tried to regain his balance, and I saw his mouth open into an O of surprise. His foot couldn’t find any purchase on the sloping roof, and he spun in an unsteady pirouette, his arms windmilling, before toppling sideways. As he fell, the side of his head smashed against the shingles. The sailor’s cap went flying, and he tumbled downward in ghastly slow motion. The gutter that ran around the bottom of the roof halted his progress, but only for a moment. There was a terrible crack as the molded aluminum gave way, and then Nathan’s father rolled off into nothingness.
We ran.
Mr. Tilly was lying on a narrow strip of grass that edged up to the side of the house. He looked as if he could have been enjoying a brief nap in the afternoon sun had it not been for his right arm, which was bent at a grotesque angle halfway between his elbow and his wrist. The sight of the misshapen limb caused a tide of bile to rise in my throat. Finally I remembered to breathe and gulped down some air.
We stared down at Mr. Tilly’s body. A matrix of angry cuts and bruises spanned his forehead and cheeks. His mouth was hanging open. There was a smearing of dark red where his teeth should have been. A small groan emerged from his throat. He coughed painfully and half opened his eyes. He squinted foggily at us.
“Hello, boys,” he croaked. The words emerged barely intact from his punctured mouth. “We might have to wait for that ice cream.” A glistening pearl of dark blood filled his right nostril. A thin white nylon line emerged from between the fingers of his left hand and stretched into the sky. I looked up. The scarlet kite hovered above us, only now its presence felt more sinister, like a bird of prey readying to strike.
“Don’t die, Mr. Tilly,” I said, my mouth dry with terror.
“Go fetch your mother, Nathan,” he said. “She’s on the beach.”
Nathan stared down at his father. “I’m not leaving you,” he said. “I’m never going to leave you.”
“You’re a good boy,” said Mr. Tilly, “but I really need you to go.” He closed his eyes. “The kite was just an excuse to be on the roof, you know,” he murmured.
Nathan knelt down beside him. “What do you mean?”
“When I’m up there I can see your mother as she walks up and down by the ocean. That’s why I do it.” He smiled. “I love to watch her.”
There was something so absolute about the stillness that overcame him then that I knew at once that he was dead. As life drained out of Mr. Tilly’s pulverized body, his grip on the kite line loosened. Before I could stop it, the nylon line slipped free of his fingers and was tugged away by the wind.
That was when Nathan turned away and sprinte
d down the side of the house. He disappeared around the corner, toward the ocean.
“Nathan!” I yelled. “Come back!”
But he did not come back. I looked down at the dead man. Not sure what else to do, I dutifully began to pray for Mr. Tilly’s soul.
Moments later I heard footsteps approaching. I turned around to see Nathan running toward me, followed by a woman. “Leonard!” she screamed. She threw herself on top of the dead man and began to beat her fists against his chest. The pummeling made Mr. Tilly’s head twist to the side, which caused the blood in his nose to trickle across his cheek in a single dark rivulet. Finally the punches slowed, and then stopped. Mrs. Tilly laid her head against her husband’s chest. Her face was turned away from me.
In the stillness that followed I glanced at Nathan. He was staring up into the sky, watching the scarlet kite. By then it was no more than a speck of color in the distance, dancing away from the earth. Nobody said anything for a long time.
Finally, Mrs. Tilly wrapped her arms around her dead husband and wrestled him into a sitting position. She clung to him, letting out a low moan of despair.
In the spot where Mr. Tilly had been lying was a misshapen cake of brown fur. It was, I realized dully, about the size of a mongoose. Nathan fell to his knees and inspected the flattened body for signs of life, and then his face dissolved into a waterfall of silent tears. While he wept, Mrs. Tilly held her husband in her arms, swaying gently. She did not look at Nathan once.
They looked like the two loneliest people in the world.
FOUR
They chose the smallest chapel in Haverford, but it was still too big.
Holy Trinity Church of Christ was squeezed between the town library and the automated car wash. The only indication that the building was a place of worship was a modest wooden cross above the front door. The church couldn’t have held more than a few dozen congregants when it was full, but there were only five of us at Leonard Tilly’s funeral. Nathan and his mother were in the front pew. My parents and I sat behind them.
Nathan was wearing a dark suit several sizes too large for him. He stared straight ahead all the way through the service, not once glancing back at us. Mrs. Tilly dabbed at her eyes with a small handkerchief. During the hymns they stood with their hymnals open but neither made any sound at all. My father mumbled the words in his usual tuneless way, and I sang cautiously along in my unsteady treble. It was left to my mother to carry the melody, which she did with her customary verve. I glanced at her halfway through the third verse of “Nearer, My God, to Thee” and saw that she was crying.
There was nothing my mother loved more than a good funeral. She wept as she listened to the choked-up eulogies, she wallowed in the somber beauty of the mournful hymns. It didn’t matter whether she knew the deceased. It was the shared grief of the living that she sought, the congregation’s dazed sadness at the finality of their last good-bye.
Every service my mother attended was just another rehearsal for the main event, for the funeral that was yet to come.
—
MY BROTHER, LIAM, had been a beautiful baby. Our house was filled with photographs of his little face grinning impishly into the camera. He was a happy child, delighted with everything he saw, quick to learn new things. My mother loved to put him in the stroller and parade him around the town. She sat with the other mothers at the town playground and watched as Liam happily dug holes in the sandbox with his plastic spade. But he had been slow to walk and never quite outgrew his initial unsteadiness on his feet. His infant totter morphed into an inelegant waddle. He began to fall down more and would lie on the ground sobbing, waiting to be picked up. Soon my mother began to follow him around, an anxious shadow, ready to haul him back to his feet whenever he fell. By the age of two and a half, he didn’t want to leave his stroller. He screamed when my mother undid the straps and lifted him out. Rather than running off to play, he would try to clamber back into his seat. My mother did her best not to worry, but somewhere deep within her a seed of unspoken terror had been planted, and it grew until she could no longer turn away from the truth.
So began a nightmare of appointments and examinations. Liam was prodded and poked and observed as he struggled to walk across a room. Cautious, inconclusive reports led to more referrals and further scrutiny. My parents’ world was finally blown apart in the office of a consultant neurologist in Portland. Liam, he told them, suffered from Duchenne muscular dystrophy.
My parents sat there, as still as death, saying nothing, waiting for more.
It was a slow, wasting disease, explained the doctor. Over time Liam’s muscles would atrophy until he was no longer able to walk at all. Once he was in a wheelchair, other problems would present themselves. Long periods of immobility would result in scoliosis, a vicious curving of the spine, which would cause a compression of the lungs. It was usually respiratory problems that killed Duchenne sufferers first.
And no, said the doctor, in answer to the question that had not been asked. There is no cure.
My parents clutched each other’s hands, unable to escape those four words.
How long? whispered my father.
It varies, answered the consultant. The majority of patients die before the age of twenty, but there are exceptions. Some can go on longer, with luck and careful treatment.
Then my mother whispered an even bigger question: Why?
We don’t know exactly what causes the disease, admitted the neurologist. We think it results from a genetic mutation that inhibits the production of muscle protein. But there are thousands of such proteins, and we haven’t identified which one is responsible. What we do know from the data is that it appears to be hereditary, and it seems almost exclusively to affect boys.
His words echoed around the room, but my mother could not let them in. Four days earlier she had sat in another doctor’s office and been given the date, about twenty-eight weeks away, when I would be born. Scarcely able to form the words, she asked whether her new baby would have the disease, too.
The doctor leaned back in his chair. Statistics, he said. You know what people say about them, so take this how you will. The studies suggest that if your new baby is a boy, the chances are about fifty-fifty that he’ll develop Duchenne as well.
My mother gazed down at her still-flat belly, numb with fear.
The great-granddaughter of Irish immigrants from Cork, my mother had been raised a devout Catholic. All her life she had found comfort in the unworldly rituals of her faith, and never more so than back then. Every night she knelt down beside her bed, her Bible clasped between her hands, and prayed for a baby girl, as fiercely as she had ever prayed for anything.
Seven months later, as she lay in the delivery room with her arms around my purple, minutes-old body, the nurse bent over and told her that she had a son. The odds of future heartache doubled in an instant and eclipsed all joy.
—
LIAM’S CONDITION CONTINUED to deteriorate. Physical therapists came and went. My parents massaged my brother’s feet and stretched the tendons in his young legs to ease his discomfort. He continued to walk, but with increasing difficulty. School was hard from the start. In first grade the other children made fun of his slow, unusual gait, and when they pushed him to the ground, he was unable to get back up. He would lie sprawled across the playground and yell at his tormentors while they stood over him and laughed. Sending Liam off to school each day was torture for my mother. He could not take the bus that passed by the end of our road—the steep steps at the driver’s door were too much for him—and so every morning my mother drove him. She helped him out of the car and watched as he limped off without a backward glance. For the rest of the day she would dangle me off her knee and tickle me under the chin, but her mind was inside those school gates.
By the time I was three years old, Liam needed full-length orthoses, grotesque plastic contraptions that sheathed his
legs from his buttocks down to his ankles, in order to keep him standing upright. Stairs became a torment. That winter my father converted his ground-floor study into a bedroom for Liam. He painted a dazzling mural across one wall, a dramatic jungle panorama with beautiful creatures peeking out from behind verdant fronds of exotic foliage. I didn’t like to go in there, fearful that all those monkeys, zebras, and parakeets would make me weep with envy. I knew I should not complain, should not begrudge my brother this one small thing. But I ardently, secretly wished that my father would paint my bedroom wall, too.
On a therapist’s recommendation, my parents purchased a trampoline. Each afternoon my mother lifted Liam into the center of the rubber circle, where he would perform a series of exercises. Lift one leg, lift the other leg. He fell down frequently, but as his balance improved, my brother learned how to generate enough momentum to launch himself skyward. In those moments when he was airborne, his mutinous legs were no longer trapped beneath the weight of his body, and he yelled with glee, every bounce a tiny glimpse of freedom.
All this time, my parents were watching me. Every time I stumbled or tripped, they were skewered by an ice-cold needle of fear. They would wait for me to do it again, looking for a pattern that would spell the death of hope. But there was no pattern, not for me. I was just a clumsy child, manifestly healthy, charging about without a care in the world. I spent my days climbing trees and flying up and down the neighborhood sidewalks on my bike. By my fifth birthday I was almost as tall as my brother, and finally my parents allowed themselves to believe that they would be spared a second dose of heartbreak. As she lifted her wreck of a son in and out of the bathtub each night, my mother knew that there was a world of grief to come, but at least the scope of the tragedy was finite now.
—
SOON AFTER MY BROTHER turned twelve, he was confined to his wheelchair, and his body began its next phase of deterioration, a curvature of the spine that began to warp his young body into a gruesome knot. Navigating school corridors and classrooms was becoming increasingly difficult, and while nobody could push Liam over on the playground anymore, he still had to endure the cruelties of his classmates. My mother begged him to let her homeschool him, but he refused. My brother possessed a stupendously obstinate streak. Everybody would have understood if he had opted to stay home, which was precisely why he refused to do it. People were always making allowances for him, and it drove him crazy. All Liam ever wanted was to be treated the same as everyone else. It was unfortunate that my parents were the people least equipped to indulge him. Instead they fretted and hovered over him, ceaselessly vigilant and impossibly suffocating. It took Liam months to convince my father that he should be allowed to have a job at the amusement park, just like every other kid in his class. Over my mother’s hysterical objections, he worked for two summers in the admissions kiosk, tallying receipts and keeping track of daily attendance. I don’t remember a time when he had been happier.
