A mailbox lay on its side, blown out into the street near where fire trucks were screaming to a halt. It looked like a beached salmon, its wide-open jaws having disgorged bills and catalogs and a flier that teased: “Could you use $5,000 a week forever? You may already be a winner.” Beyond it, debris smoldered on a black roof. Dark shutters bracketed unsighted apertures. The front porch swing rocked for no one. The remains of a garage burned savagely. To its right, there was a void where at least two houses should be. The street number 43546 was painted on the curb directly in front of the first one. I opened my wallet and pulled out my driver’s license. It said that I lived at 43546 Beulah Road. There had to be some mistake.
I decided that I would find my mother and my father and my brother and my Bryce Harper bobble head and my laptop. Maybe the explosion just tossed my family out of their comfortable home and they landed safely somewhere nearby. Like a neighbor’s swimming pool, or a trampoline. Or the moon. They could be waiting for me, somewhere. I willed my legs to move.
In front of a van with a satellite dish, a man with a badly arranged necktie and a yellow blazer was staring into a camera and talking fast and loud into a microphone. “Although it might take weeks to complete the investigation, a source tells Channel 6 that an accidental gas leak is the most likely cause….”
I slipped between two fire trucks and ducked under yellow tape. The cracked front sidewalk and dandelion-infested lawn that my mother would never let me mow bore witness to the truth that I was standing in my front yard. The sounds of people and machines and fire hoses and flames began to merge and cancel each other out, reduced to senseless static pouring from a thousand late-night televisions. The smoke was acrid and forbidding, like someone had gone door to door collecting bad dreams, squeezed them into an incredibly dense black ball, and set it ablaze.
As I approached the remains of the concrete front steps, anguished faces assembled, dissolved, and reformed in the flames as plumes of water lanced them impotently. Updrafts propelled incandescent cinders in a gruesome parody of the Fourth of July. I squinted, trying to discern anything familiar. I felt a vague sense of pressure on my face and hands. I had felt something like this pressure a few times, and in each instance it had sent my mother into hysterics. Like the Halloween when a cheap Yoda mask restricted my range of vision to a narrow tunnel and I fell hard on the sidewalk in front of the Carters’ house. After I rang the doorbell and Mrs. Carter appeared, she hesitated for a second, likely wondering if the oozing red substance on my forehead could be part of my costume. Then she ushered me into a bathroom and called my mom.
Dad and Mom talked about how I almost never cried as a baby. They drove me to lots of doctors. The doctors took blood samples, poked and prodded me, asked all kinds of idiotic questions. “Why didn’t you go home when you got hurt?” “How does it feel when I squeeze your hand like this?” I wanted to figure out the right answer so they would leave me alone.
Mom gave up her job so she could home-school me. She stopped going to movies and PTA meetings and baseball games. She probably wanted to seal me inside of one of those bubbles you read about for kids who are allergic to everything.
What possibly could have prompted her to send me out of the house alone on this day? Some premonition of impending disaster? Or was it just blind, stupid fate? All for a cake, a chocolate pound cake. How could a cake change anyone’s life? It’s just flour and sugar and milk and stuff. Oh, and baking powder. At least I still have the baking powder, I thought, opening my plastic bag to confirm its presence. Yes, a red-and-white can of Rumford Baking Powder, Premium Aluminum-Free.
Suddenly I was spun around in the grasp of someone in a bulky yellow suit. I was dragged from the blazing ruins past the yellow tape and all but thrown to the ground. It took a few moments to comprehend that a firefighter had just pulled me out of danger, the kind of danger that Mom always prevented.
The firefighter removed his helmet. “Kid, are you insane? You were about to burn to a crisp.”
“Must be in shock,” said another firefighter. “Get him to a medic.”
I was hustled about 25 yards through puddled water, clumps of dark debris, lights flashing in a perfect lack of syncopation, tired sirens, and hoarse voices to the side of an ambulance. Without looking up, a paramedic told me in a monotone to have a seat while she treated a middle-aged woman with a deep cut above her right eye. There was nowhere to sit. I realized that I had lost the milk and baking powder.
When the paramedic finally turned to me, her eyes got wide. She rushed to the back of the ambulance.
I was startled by a reflection in the ambulance’s rear-view mirror, and for a moment I thought I was seeing someone else. The face and arms were covered with nasty blisters in several shades of crimson. A few were cracked and edged with deep red and black flecks or a white, leathery sheen. I leaned closer and the image warped grotesquely. I flinched and turned away. I really messed up, I thought.
“This is going to sting,” the paramedic said as she applied wet dressings. They tickled a little. “Before we transport you to the hospital, do you want something for the pain?”
“Uh, no. Do I really need to go to the hospital? I’m okay, I think.”
“You have third-degree burns. And when the shock wears off, you’re going to be in a world of hurt.” She put down the excess dressings. “Can we call your parents and tell them you’re heading to the ER?”
No words would come.
“Don’t worry, someone will contact your family from there,” the paramedic said, loading me into the ambulance. She slammed the back door shut and yelled to the driver: “Move your ass!”
As the ambulance bounced over fire hoses and fragments of building materials, I realized that the woman had never looked at my medical tag. I lifted the chain from under my Inkbots sweatshirt and read the simple inscription for probably the hundredth time:
“Congenital insensitivity to pain,” it said on the first line. On the second: “SCN9A.”
* * *
“You’ll like it here. We have a special room for you, a special bed, and video games.” Dr. Atherton looked down his nose at me, probably expecting some expression of gratitude. Or at least acknowledgment.
I couldn’t think of anything to say. It was late, and I felt like I had washed up naked on a barren island thousands of miles from anything, with no compass and nowhere to go if I had one.
In the hospital I had asked frequently about my parents and Davey. “We haven’t heard anything definitive,” the nurse would reply. The TV news people said four people were confirmed dead and five were still missing. DNA tests were being conducted on “material” they found in and near the wreckage of the houses.
On my fifth day in the hospital, men with dark suits and briefcases appeared outside my room, talking in low voices. I was helped into an ambulance and driven to an airport, where I was loaded onto a small jet, like I was some rock star instead of a teenager who was too stupid to stay away from a burning building. Before we took off, I asked the flight attendant if someone would tell my parents where I was going. She smiled weakly and muttered an unconvincing “of course.” After we landed, Dr. Atherton and an aide drove me to his clinic. All the way the doctor talked about his accomplishments.
Now I was sitting in his large office with dark wood paneling, an extra-wide desk, and brown chairs soft enough to sleep in. My attention wandered to the plaques on his wall. “Diplomate, American Board of Medical Genetics,” with some long sub-specialty that I couldn’t quite make out. And “Diplomate, American Board of Neurology.” No family photos anywhere. Not even a lame painting of a sunset over the mountains or a harbor with boats. There were lots of lame paintings of sunsets and harbors in the offices of the doctors that my mother and father took me to. Only after we drove to a big city did the doctors come up with a diagnosis. I must have been five or six years old.
SCN9A, they said. A gene. There were several mutations in my version of the gene. They made me impervious to pain. Very rare. No cure.
I remember sitting on a bed, staring at my toes, while a lady doctor with long blond hair asked me: “Do you understand that this thing in your body makes it so you can’t feel pain?”
I looked up at her and asked: “What’s pain?”
She patted me on the shoulder. “You’re a special young man.”
Special. Probably my least favorite word in the world.
Dr. Atherton brought me back to the present: “Charles, are you hungry?”
“I don’t know,” I said, honestly.
His eyebrows, which were set too close together on his tiny forehead, all but overlapped as he leaned forward. He had an ugly pimple on the right side of his face. Thick hairs stuck out from his ears.
“Can you remember the last time you ate? At the hospital?”
“Umm, on the plane. A cheese sandwich. Some chips. They wouldn’t let me have a Coke, so I had milk.”
Dr. Atherton shuffled some papers absentmindedly. “You are very fortunate, young man. Random genetic mutation has spared you from some of life’s most unpleasant sensations. So, in a very real sense, you have a gift. A very special gift.”
That word again. I couldn’t stop thinking about my parents and Davey, as if letting go of their memory would be the final act that condemned them. I focused on a photo—I think it was hanging on a wall in our upstairs hallway--of Dad in an apron cooking on the backyard grill, Mom loading burned burgers onto a plate, me sitting quietly at a brightly decorated table, and Davey making a silly face at the camera with his baseball cap turned backwards.
Most of the time my dad was easygoing, but he was so serious when he would conduct those pilgrimages on the internet. “Found another one!” he would announce, and my mom would come racing to the computer. They acted like they had chanced upon the map to the Fountain of Youth or a long-lost winning lottery ticket. They were convinced that if they searched hard enough they would discover kids just like me and learn how other parents were coping with the other me’s out there.
A chat room discovery of “several families in Norway” with a possible connection to SCN9A mutations made Mom and Dad really excited. Dad went to visit two of the families. He even traveled to Israel once, and South Africa. Spent every last cent he had in the world.
Sometimes it was an accident; in other cases it was malnutrition or an unnoticed infection. But everywhere Dad went, by the time he got there, the kid with the mutations was dead. I remember him returning home with dark circles under his eyes.
Dr. Atherton was rambling on about the “breakthroughs in genetic research” of the past few years and the “limitless possibilities. Your gift belongs not just to you, but to the world.” He looked to his left, where a nurse was sitting motionless, hands folded as if in prayer, then he leapt to his feet. “Let’s give you a tour of this marvelous clinic, your new home.” He insisted that I sit in a wheelchair and that the nurse push me around. “For your safety and comfort.”
My parents talked a lot about safety. They spent their lives trying to ensure my safety, convinced that the moment they looked the other way I would use Dad’s staple gun to keep my baseball cap from blowing off my head when I ran to first base in the back yard. But they, and the doctors, never used words like “comfort,” at least not in my presence. It’s like their motto was: “Let’s stick to safety; that’s all we can deal with.”
However, Davey knew the unspoken words. With the innocence of youth, he asked me: “Do you get scared?” “Do you get angry?” And, “Do you know what love is?”
I never had a good answer.
In the pit of my stomach, an unusual sensation was making its presence felt. A vague uneasiness--perhaps a warning sign—and nearly as strong as that feeling of pressure on my face and hands on the day of the fire. I needed to catalog these sensations—no matter how faint. I needed to correlate them with whatever was going on around me.
Maybe this thing in my stomach is hunger, I thought.
The nurse wheeled me out of Dr. Atherton’s office, down a nicely carpeted hall, and into a bland corridor with soft yellow lights.
“Nurse?” A weak voice, from a room just ahead and to the right. “Nurse? Can you please … find my plunger?”
The nurse pushed me forward and into a dimly lit room. In the single bed was a bald man with thin translucent tubes attached to his nose and arm. Blinking lights of many colors reflected on his face like he was a mannequin in a discount department store’s Christmas display.
“Jennifer, is the pain bad again?” the nurse asked. The patient’s gruff voice and lack of hair had led me to assume that it was a man.
“Yes,” managed Jennifer, her eyes fluttering. “Bad.”
The nurse located a plastic plunger connected to a tube and placed it on a table just to Jennifer’s left. “This is Charles, by the way,” the nurse said. “He’ll be staying here a while.”
Jennifer turned in my direction. It was a fluid, confident movement, suggesting that she was not as old as I had thought—perhaps not much older than my mother. Her pale blue eyes locked with mine. I felt raw desire in her gaze, a probing and searching that burned right into me. As if she knew me, or desperately wanted to.
Before I could say anything, the nurse backed me out of the room and started to wheel me down the hall toward where the doctor had disappeared. Abruptly, she stopped, pushed me into a bathroom, closed the door, took a deep breath, and set her mouth in a tight frown. She was short and thirtyish and kind of cute, with bangs, round cheeks, thick lips, and dark brown eyes. She might even have been sexy if not for the starched, standard-issue blue uniform.
“I shouldn’t be telling you this,” she began. “But you deserve to know. Just don’t tell anyone, okay?”
I shook my head in agreement. There was no one to tell anything to, anyway.
“On the doctor’s desk, I saw some papers.” She looked anxiously at the door. “The doctor is going to court to be named your guardian. He’ll be like your parent. He’ll be able to do anything he wants to you. Do you understand?”
“No way. I don’t even know this man.” Mom, Dad, please do something, I pleaded silently.
Dr. Atherton was out in the hall, calling for us. The nurse flushed the toilet and opened the door. We rejoined the tour, culminating in a round room suffused with blinding light and featuring a giant table surrounded by pieces of equipment I couldn’t begin to identify.
“On Friday, we’ll take a close look at you,” the doctor said. “We’ll get to the bottom of your … condition. And did I tell you that a reporter from The Wall Street Journal is going to write an article on us? I mean, on you? You’re going to be famous, young man.”
* * *
Someone was shaking me, hard, raising me from deep slumber. A flashlight was alternately blinding me and distracting me with its jerky motions. The bedside clock read 5:34.
“Get up. Quickly.” A familiar voice. The nurse’s.
“You have to get out of here.” There was fear, and perhaps anger, in her voice. “That doctor is going to cut open your beautiful body, desecrate the Lord’s work, in the name of science. No, in the name of making himself rich and famous.”
“He said he was going to help me. And who the hell are you, anyway? This is--”
“Shut up and listen to me, Charles. Your life is in danger.”
“It’s Charlie,” I said, sifting through her words and trying to convince myself that I was not dreaming. “Charlie, not Charles.”
That weird sensation in my stomach was back, but worse--gnawing, demanding attention. As I struggled to identify it, a faint image began to surface from deepest memory, to take on details and solidify into something recognizable.
Stairs. My parents had padded all of the stairs of my house with the thickest carpet sold on the planet. They lectured me, made me swear to hold on to the rail for dear life whenever I took a step. Now I was seeing myself back at the top of the staircase, looking down, wondering what all the fuss was about.
And Davey’s words came trickling back from some corner of my consciousness, challenging me once more.
“Do you get scared?” “Do you get angry?” “Do you know what love is?”
I hoped that if I concentrated hard enough I could connect the dots and start to understand--and possibly experience--some of the things that other people feel, even if it would be faint or confusing.
“I can’t leave in this nightgown,” I said, trying to buy time.
She handed me money, ten- and twenty-dollar bills. “Hurry. The day staff arrives at 6.” She raced out of the room.
I stumbled into the corridor, not sure where the exit might be. I noticed the room where the sick woman lay. I entered it quietly and tried to adjust my vision to the low light.
“I’m awake.” She was so still, her voice startled me. But it seemed stronger than before. “It’s Charles, right?”
“I prefer Charlie, but you can call me Charles. And you’re Jennifer?”
“Call me Jen.” She sighed deeply. “What brings you to the room of a dying woman, Charlie?”
“Curiosity, I know. It’s alright. Never seen anyone as bad off as me, I bet.”
Except maybe me, I thought. “Can I ask you something?”
“Sure, but come sit by me. I don’t get many visitors.”
She suppressed a dry cough, picked up her water bottle, took a long sip. Her fingers were shaking. Her arm was rail thin and covered with dark blotches. Behind her, I could make out more machines than I had noticed during my earlier visit, machines blinking and coughing and wheezing like they too were on life support. A vase with fake red and purple flowers sat among the beige and silver-colored pans and cups on a table. She hadn’t eaten much of her dinner; it looked like meat loaf and potatoes and something green. The dessert was gone.
“Is it cancer?” I began. “And does it hurt real bad?”
She looked toward the ceiling. “Yes. And usually,” she said, dragging out the last word.
“And when it hurts real bad ... like, how does it feel?”
Jennifer took a long, shallow breath and let it out slowly. “How does it feel.… Charlie, it’s like your body is on fire. It’s like an electric current running up and down your nerves.”
Her words remained a foreign language. But like a foreign language, every so often there was a word or inflection that held a kernel of familiarity.
“What do you do to stop it? To make it better?”
After a moment: “How old are you, Charlie?”
“Seventeen. I’ll be eighteen in November.”
“When you get older, Charlie, you’ll learn that there’s usually no such thing as getting better. Come November, you’ll be old enough to drink beer and get into all kinds of mischief, and I’ll be gone.”
I thought of my parents and brother, how they never got a chance to grow old. And that I would never see them again. “Isn’t Dr. Atherton helping you?”
“Oh, he’s trying.” Jennifer sat up a little. “Problem is, he’s looking for a miracle, some magical, mystical, holy shit kind of treatment. Some big experiment to lessen the pain, even if it doesn’t cure anything. Genetic splicing, or replacing some of my body’s nerves with pieces of nerves from a donor. A young, innocent donor, perhaps,” she said, holding my gaze like a crucifix. “Is that something you can live with? I don’t know if I can.”
I whistled softly. That nurse was right. This is a total nut house. Yet something about Jennifer made me want to help her. Maybe it was because she wasn’t trying to manipulate me or talk over my head like I was an infant. Or perhaps I just wanted this woman--through some impossible twist of fate--to be my mother.
What if I could trade places with Jennifer for a day, or five minutes, or five seconds? Could I experience her pain and begin to understand my own screwed-up life? And what if, in the process, I could relieve her misery for even a short time? Would it change her life for the better? Or would it just make things worse when the pain came storming back?
We gave ourselves to the rhythm of the machines and our own heartbeats, counting down the seconds of our lives.
Jennifer reached for the plastic plunger on the table to her left. She gave it a slight push. “That should help a little,” she said, her body relaxing in anticipation of the drug’s impact. Then: “Is it true, Charlie?”
“That I don’t feel pain? Pretty much.”
“Those blisters. What happened?”
I closed my eyes and saw myself back at the top of the padded staircase in my house. I felt the tension of being close to the brink, with little room to prevent myself from going over the edge. I couldn’t speak.
Jennifer lifted the plunger. “You see this? This can make it all better.”
“Yes. Someday this will be my salvation, Charlie. This is the good stuff, the big sendoff. When I just can’t stand it anymore, or when I’m too damn tired to fight it. All I have to do is push it all the way.” She pantomimed the motion with her empty right hand. “It’s so easy.” Her eyes sparkled. She was probably an attractive woman, once. Somebody’s girlfriend or wife. Maybe a young boy’s devoted mother.
“How will you know? When it’s time?”
“Maybe I’ll get a telegram from Up There--or Down Below--announcing my transfer.” She continued in a softer voice: “Or I’ll just finally realize that I’m wasting everyone’s time and money lying here, worthless, alone.”
She took a deep breath, exhaled. “I’m dead already, Charlie. I just won’t admit it, or won’t accept it.”
The image of the staircase flooded back, but it was elusive, shimmering, like the air above a hot asphalt highway viewed at great distance. I realized that my house was ablaze. I was still at the top of the stairs, on the precipice. I had to do something. I tried to conjure the faces of Mom and Dad and Davey, to picture them at the bottom of the stairs, there to catch me, to save me. I reached out with all my senses, but I could detect no trace of them. Davey’s constant energy and enthusiasm, Dad’s dry humor and devilish grin, Mom’s bottomless generosity and stony endurance. Everything and everyone I had taken for granted day after day--all were gone. They were gone for good.
That strange feeling in my stomach would not be contained. I focused my consciousness on it. Time came crashing to a halt. I let go. I was falling, tumbling out of control, toward a giant black hole. I felt disoriented and panicky and sick as I fell and fell and fell. The sensations were more intense than anything I had ever experienced, permeating and consuming me. But I refused to hide from them; I embraced them; and at some point they started to relinquish their venom. They passed through me and beyond me. The black hole had vanished. I was floating, suspended in a misty cloud. My vision was blurred, like on the day of the fire when the smoke irritated my eyes. I realized that I was sobbing uncontrollably.
I felt terrible and wonderful. I felt alive.
“Charlie? Charlie? My dear boy.” She sighed and waited for me to regain my composure. “I have a question for you. A favor, actually.”
She placed her right hand over my left. It felt like a ghost’s. “The plunger. Would you please push it?”
For a moment, I couldn’t believe what I was hearing. But when I examined her face, her eyes dialed into some distant dream, I could. A shiver ran through me.
“All the way? Now?”
“Yes, Charlie. Would you do that for me?”
I walked to the table and lifted the plunger, ran my fingers over it, weighed it in my palm. How innocent: Just clear plastic and liquid. I ran my other hand over the top of Jen’s head, a thin, leathery surface that made me think of a parchment scroll lying forgotten for centuries in a cave—so fragile, hiding mysteries within mysteries.
It’s so easy, she had said.
“Why? Why me?”
“Because I’m a coward,” Jennifer snapped, with all power remaining in her frail body. “A coward.” She slumped, vanishing among the blankets and sheets.
The room shrank. Every molecule of air compressed and ceased to move. The blinking lights and machine noises broadcast urgent messages in codes I could not decipher. I smelled sharp fear. I started to tremble. I needed to drink fresh air.
I put down Jen’s plunger and caressed her forehead lightly once more. I realized that I couldn’t help her.
I checked the corridor, descended the main staircase, and exited through the front entrance. The morning was arriving. Several people plodded along the sidewalk, faces folded downward. Some carried umbrellas. A newspaper rack warned of war in the Middle East. A young bird cried out for attention. I smelled strong coffee and sticky sweet cinnamon and foul garbage rotting in the gutter. I laughed as I realized that I needed clothes. No big deal, I thought, I can buy some.
I started walking.