Football oozed through my father's veins, from his dramatic linebacker plays on schoolboy teams to his days as a star for the Princeton Tigers. In his late twenties he volunteered as a youth coach and was proud to have his family share his love and passion for the game of football. I was only a few months old when I attended my first game in Hightstown, New Jersey, where I was born. On that crisp autumn day in 1968, Dad coached on the sidelines as my oldest brother, Mark, age nine, led the Hightstown Rams to yet another victory. Both Mom and Dad cheered as Mark ran a kickoff back for a touchdown, caught several passes, and made his efforts complete with several crushing tackles. The postgame celebration on the field was a family affair, with moms and dads circulating among the players. In the midst of celebration, my dad tossed me a tiny bit into the air and caught me. "This guy will score touchdowns too some day," he said as my mom immediately took me back into her arms.
Back home after the game, my dad played with me in his lap, first making funny faces, trying to make me laugh, then getting me to focus on a small football that he moved from side to side. Suddenly, he noticed my eyes shaking as they tried to follow the ball. He stared at them, moved the ball again, stared again, this time a moment longer, and then examined them closely. Finally, he asked my mom if she had seen my eyes shake and if this was normal for a baby. My mom cradled me and carefully studied my eyes. Knowing my mom, she inwardly panicked but outwardly forced herself to stay calm. She told my dad matter-of-factly that she would keep a close watch on it, and later, alone in their room, she called the pediatrician.
That call began a two-year nightmare of doctor visits around the country as specialists tried to diagnose my strange disease. I was subjected to some frightening tests with apparatus frequently placed right onto my open eyeballs, sometimes for hours at a time, as intense beams of light focused on my retinas. When I lay on my back on a metal hospital table, with the harsh smell of antiseptic burning in my nose and throat, the temperature was always cold, no matter how hot it was outside. Hospitals seemed like places ripped out of time, floating beyond the familiar warmth of my life, and the parades of specialists, drifting in and out of my perception, were merely disembodied voices: "Open your eyes wider, please." "Keep your eyes still, please." "Focus on my fingers, please." "This may sting for a moment."
Sometimes, the voices would even talk to each other. "Have you ever seen this pattern of hemorrhaging in the macula, doctor?"
"Unbelievable! What a fascinating case study."
Each specialist had a different diagnosis. A few recommended courses of action that could only be described as bizarre. One specialist pronounced confidently that I suffered from weak retinas. "The solution is a bit obtrusive," he admitted, "but it's the only remedy I know. Erik's retinas need to be stimulated into reattaching themselves to the eyeball. The ideal environment for growth is a liquid environment."
"Liquid environment?" my frantic mother gasped.
"It's completely safe. He'll be attached to a breathing tube and he'll only be submerged for a few months."
"We'll sleep on it," my dad promised, as he took my mother's arm and moved toward the door. "He'll be able to come up for meals, of course," my father half joked.
Another doctor believed a virus was attacking my retinas and wanted to start me on an intensive series of freezing treatments. "I'll inject liquid nitrogen into the diseased portion of the retinas." Then he plucked a leaf from a potted plant in his office and crumpled it in his palm. "You see this leaf?" he asked, thrusting it toward my parents. "That's what liquid nitrogen will do to that virus. Unfortunately, he'll probably lose quite a bit of vision, but, nevertheless, it has to be done. I'll schedule the surgery for tomorrow."
"Maybe we'll hold off," my mom said, glancing nervously at the crumpled leaf.
After dozens of specialists, there was still no medical consensus, not even agreement on whether my condition resulted from a virus or a genetic problem. While my dad concentrated on his job and the rest of the family, my mother scurried from doctor to doctor, hospital to hospital, pacing outside examining rooms, draining herself emotionally and physically in the process.
Finally, at age four, the path led to the famed Boston eye clinic, Retina Associates, regarded as the best in the world. After more tests and many more doctors, Dr. Brockhurst delivered the bad news. "Erik has retinoscheses, an extremely rare eye disease, which we've never seen before in a child so young. His retinas are already detached in the center of his pupils, so he can't see straight ahead, but he does have limited peripheral vision, which will allow him to get around for a number of years. The pressure, which is causing the damage, though, will continue to increase gradually over time-there is no way we know to stop it. Eventually it will cause total splitting of both retinas."
Almost too quiet to hear, my mother asked, "How long will he be able to see?"
"It's hard to say, it's not very predictable," responded the doctor.
More forcefully, my dad asked again, "What's your best guess?"
"I'm sorry," Dr. Brockhurst said haltingly, "but Erik will be blind by his early teens."
On the way home to New Jersey, my parents were quiet. Just before leaving Boston, we stopped at a cathedral. My mother had heard of a priest who had performed miracles there. The giant church was dark and mysterious as we entered. No clergyman was present. She waited with me for an hour to see someone, trying to be patient, but her anxiety increased minute by minute. When no one appeared, she finally knelt, with me at her side, and prayed aloud for God to restore my sight. I had rarely been to church, and so my mother's hot tears splashing on my forehead combined with the strange dark cathedral were terrifying. I could hear the fear and dread in my mother's voice as she asked God for a miracle. I had never known what full sight meant. I saw what I saw, what I had always seen, but many people close to me, particularly my mom, seemed to be so frightened. Kneeling in the church and listening to my mother's wails, her arms wrapped tightly around me, I prayed along with her. I prayed that I would see like my brothers and be able to catch a football and charge down the basketball court on a fast break. I prayed to put these awful trips to Boston to an end. I prayed for sight so my parents wouldn't bring me to dark places and sound so desperate and scared. All I wanted was to be away from this place, home in my backyard playing in the piles of crisp fall leaves, riding my Big Wheel up and down the sidewalk, and exploring the fallen oak tree, its exposed roots making it my own secret fort.
Before I started my first days in kindergarten, Dr. Friedman, a low vision specialist, gave me special thick magnifying glasses that enabled me to read letters almost as small as those my dad could see. My mother had taught me the alphabet, and I used the bubble glasses to help me find the letters on the page. Even with the bulgy glasses, though, I had to bend over and press my face against the page before the letters came into focus.
As kindergarten approached, my parents looked at various schools for me. The public schools were crowded, and the student-teacher ratio didn't allow any of the special attention I would need: assignments in large print, special seating near the blackboard, after-school help with reading. My mother looked at a private school but, even there, found reluctance. On my first visit, I arrived neatly dressed-alligator shirt, pressed khaki slacks, clean sneakers. I held my mother's hand as she walked me inside the school. She straightened my shirt collar and squeezed my hand with pride. After a review of my medical situation, the discussion turned to my ability to see print. Proudly, my mother reached into her pocketbook and gave me my special glasses with quarter-inch-thick lenses and my cloth-page beginner's reading book. I put my glasses on, carefully opened the book, put my right eye all the way down to the page, and began reading slowly: t-a-b-l-e, c-h-a-i-r. I expected smiles, but was confused by the panel's silence. While my reading ability was pretty advanced for a four-year-old, watching a little boy press his nose against the page was a little alarming to the educators. It was obvious I would never be able to read fast enough to keep up with my class. The school had never had a legally blind student before and was fearful of whether it could provide all that I would need. Ultimately, they concluded that it would be best for me to attend a school for the blind, and they offered to help my mother make arrangements.
"He will not go to one of those schools," she said forcefully.
"I believe the teachers there would be more cognizant of his needs," explained the headmistress.
"I have a second cousin, maybe a third cousin," my mom began. "She was born prematurely and the incubator made her blind. You know what they taught her at that school for the blind?"
"No," the administrators replied politely.
"They taught her to tune pianos. Now there's nothing wrong with tuning pianos. It's perfectly respectable. The funny part is that Penny's tone deaf. She's blind, so they teach her to tune pianos, but they ignored that she was tone deaf." My mother burst into laughter, but it sounded strained. The administrators smiled politely, wondering where she was going with this. "You know what she does now?" my mom asked.
"No." The administrators shook their heads.
My mother paused and then delivered each word separate and deliberately, "She does nothing. She can't make a bed or cook a meal. She can't even peel an orange by herself. And what's going to happen to the poor thing when her mama and daddy die? Where's she gonna go? What's she gonna do? Who's gonna peel her oranges then? My baby can move around the house and neighborhood on his own. He can take out the garbage and vacuum the floor. He can look at comic books. Puts his head right against the page, but he can see them. He can swim in the pool, dribble a basketball. He plays football with his brothers. They let him be quarterback and yell out, 'Erik, over here. This way,' and he throws it right to them. He's not going to tune pianos and he's not going to sit around the house waiting for the dinner bell. He's going to go to a normal school, with normal children, and even if I have to go to school with him, he's going to learn."
I don't know how my mother found the strength to oppose the world. Maybe it's simply a mother's primal instinct to nurture and defend her child. She was as unprepared as the administrators sitting across from us. Somehow though, she believed in me. I was just a little boy with my ink-smudged nose pressed against the page. I had done nothing yet to prove myself, so how she saw strength, opportunity, and promise, while other people saw problems, obstacles, and limits, I'll never know for sure, but her belief in me stemmed from the evidence of her own life.
Ellen Suzanne Baker had grown up in Jay, Florida, a hard-drinking, one-stoplight town near the border of Alabama, picking cotton at two pennies a pound with her younger brother, Kenny, and shelling peas and butter beans from the family garden with her mother, Taletha. Some of the more well-to-do families in town wouldn't allow their children into the cotton fields, but Martin and Taletha Baker had grown up in the depression, when the battle cry crackling over the radio was "Wear it out and use it up. Make it do or do without," and they weren't training their children, as Martin put it, "to meet the public"; they were teaching them to respect hard work and the bounty that came with it. Until Ellen was an early teen, almost all the food that passed through her lips, the clothes she wore, the dishes she ate from, the vases in which she arranged flowers, were either stitched in Taletha's sewing room, baked in her kiln, or grown in the red rich soil behind her house.
By the time my mom was sixteen years old, while others her age were dropping out of school, having babies, and starting work in the fields, signs of promise shimmered, like waves of heat rising up from the soybean fields, that Ellen Baker was going places. A top honors student and head majorette, Ellen led the school band and town parades while performing twirling baton throws with tricky behind-the-back catches. To honor her talent and beauty, the Soybean Grower's Association of Santa Rosa County voted my mom Miss Soybean Queen. The governor of Florida gave Ellen a special crown and invited her to help cut the ribbon that would open the Florida State Fair. Taletha made her gown, lavender and purple with a sea of ruffles circling from waist to floor. The governor's honor had come with a luxurious prize: a free trip for two to tropical Cuba. So Ellen and her mother, who like most in Jay, had never been out of the Southeast, found themselves laughing and crying with joy as they boarded a jet plane bound for Havana.
They painted the town, sitting in the Tropicana, where Desi Arnaz got his start, watching companies of Latin entertainers dance the tango, cha-cha, and the samba. Once, Ellen slipped away and her mother found her standing at the threshold of a busy casino, staring wide-eyed at twinkling lights, flashing screens, and tall, handsome blackjack dealers wearing stiff tuxedos and rings that sparkled with brilliance as they shuffled and dealt cards in fast-motion. Later Ellen and her mother walked through a park packed with university students lounging around on blankets when one called out, "Bonita! Bonita! Muy bonita!" Then many others followed, "Bonita, bonita, beautiful." They were entranced by my mother's long blonde hair and fair complexion. One bold young man even stepped in front of Ellen and performed a few lively moves of the cha-cha. Without missing a step, my mother fell right in and they danced in the open park, with no music to guide them and with the other boys laughing and cheering. As my grandmother likes to say, "It was right out of a scene from West Side Story," but true to that story's violent undercurrents, my mother's young life was also in store for a tragic surprise.
After graduation, my mother married her high school sweetheart, Jake McNary, a big strapping farm boy with a gentle voice and a kind smile, and soon, they had produced two beautiful children, Suzanne and Mark. Sadly, not even a year through the marriage, Jake was coming home later and later, and sometimes, not at all. When he did come home, his gentle demeanor turned belligerent, a few beers and he could "whip the world." The last straw was on a slurred drunken night when Jake came home and slapped my mother across the room. She was afraid for herself but terrified for her children that his increasing anger would turn on them. My grandfather had finally told her, "Everyone's life's just a batch of changes, some good, some bad, and yorn ain't no different. You wan' leave him, your mama and I'll back you, but if you do, you best look straight ahead and never look back." My mother had assumed marriage was forever. She must have been so disappointed in herself. Unlike so many other locals her age, she had finished high school, had been Miss Soybean Queen, had traveled to an exotic world, and she had married someone she thought was the man of her dreams; but she listened to the words of her strong-willed father, gathered up a few belongings for her and her children, looked straight ahead, and never looked back.
Living in the room she had grown up in, she supported her children by working the factory floor at Chemstrand Manufacturing, a big plant producing nylon carpet fibers. She had worked there almost four years when a friend invited her to a party at the Marine Corps officer's club in nearby Pensacola, where she met my father, a recent Princeton University graduate and student at the flight academy. They fell in love and within a year, they were married under the crossed swords of fellow Marine Corps pilots in a traditional military ceremony. A few years after that, she gave birth to my brother, Eddi. I was soon to follow.
At the end of our meeting with the private school administrators my mother took my hand, and we left. A week later my mother got a letter informing her that they had decided to accept me on a trial basis, provided my mom assist me in the classroom. So my mother was often with me, reading my assignments, practicing with me, and rewriting class work into larger print. Eventually my mother backed away so that I could become more independent. Once, in the first grade, I came home from school bragging that I had gotten all the words right on a spelling quiz. I proudly showed my mother the paper. At first she was ecstatic and then, looking over the paper, she grew silent. The quiz had pictures of animals and we were supposed to spell the names underneath. My quiz had a series of illegible marks scribbled across the page in yellow crayon. A smiley face sat atop the page giving the work its approval. I could hear my mother mumbling, "How... smiley face...pile of shit?" The next day my mother showed up in class and approached the teacher, quiz in hand. "With fifteen children in a class, I'm sure it's difficult to give special attention to every child, but when a child hands in a paper full of yellow scribbles, surely it doesn't deserve a smiley face. He's blind. He's not stupid, and he can do better work than this. Damn smiley face. Draw a pitchfork and horns next time. Anything but a smiley face."
"I have never taught a student like Erik," the teacher replied defensively. "I was just attempting to boost his self-esteem."
"He doesn't need self-esteem," my mother said. "He needs to know how to spell." That night, my mother sat me down and pulled out the very same quiz. With a black pen, she made me spell out the names of the pictures all over again. I rewrote the words right over my faint yellow marks that even I couldn't comprehend anymore. Each new stroke of the solid black pen gave me a sense of security and comfort, and seemed to bring a layer of order to the mayhem beneath.
My mother always tried to bring order to my world. When she bought groceries, it was my responsibility to put away the food I liked to eat-animal crackers, peanut butter, oranges-so I could easily find them when she wasn't around. The same principle applied to laundry. She'd place the clothes bin in front of me and I'd go through it, folding the underwear, sorting the socks, and putting it all neatly in the drawer. Once, I was in a rush to go out and play, and only stuffed the bundle in haphazardly, but she caught me, pulled the clothes out, and angrily threw them in a heap on the floor. I had to fold and sort all over again and learned my lesson. Even at age six I thought she was a neat-freak, but there was no bending her fierce will. School shoes were to be put away in the closet; jackets were to be hung up. In return, she did the same. She always remembered to close the dishwasher after put- ting dishes away, so that I wouldn't come screaming around the corner, as I often did, and smash my shins on it. Cabinets were never left half opened, and buckets and mops were never left in the middle of the room.
My father rivaled my mother in persistence, especially when the goal was physical. He came from a strong German family in Pennsylvania. While my mother was eating black-eyed peas and collard greens, my father dined on red cabbage and potato pancakes. Every Saturday, he'd suit up for the big game and every Sunday, he'd don his coat and tie for early morning church. His father owned a concrete factory, and it was as though Ed Weihenmayer was forged of that very same concrete. During his Princeton days, he had worked his body beyond exhaustion, playing football in the fall, wrestling in the winter, throwing the hammer in the spring, and graduating in the top of the engineering department. After college, he had enlisted in the Marines, serving his country as an attack pilot flying A-4 Skyhawks on 108 missions over Vietnam. Years after his service, he still woke up every morning at the crack of dawn and, before starting off on his two-hour commute to his Manhattan job, saluted the Marine flag that flew above our porch and the American flag that flew right above it. Whenever Kennedy's famous speech played on TV: "Ask not what your country can do for you, but what you can do for your country," my father always got teary eyed and, during the president's State of the Union Address, he'd take the phones off the hook and watch with admiration. On weekends, he'd wake his four children-Mark, Suzanne, Eddi, and me-with a familiar but corny, "Rise and shine like the morning sun. Breathe in that fresh morning air." When he was feeling especially energetic, he'd wake us up by putting his fists up to his mouth and playing reveile on a pretend bugle. Mostly, his early morning speeches and bugling were met by groans while Mark and Suzanne buried their heads under their pillows. Some fathers read aloud to their sons from fairy tales or nursery rhymes, but my dad would sit me on his knee and read me his favorite poem, "Don't Quit."
When things go wrong as they sometimes will, When the road you're trudging seems all uphill, When the funds are low and the debts are high, And you want to smile, but have to sigh, When care is pressing you down a bit- Rest if you must, but don't you quit. Life is queer with its twists and turns, As every one of us sometimes learns; And many a fellow turns about When he might have won, had he stuck it out. Don't give up though the pace seems slow- You may succeed with another blow. Often the goal is nearer than It seems to a faint and faltering man; Often the struggler has given up When he might have captured the victor's cup; And he learned too late when the night came down, How close he was to the golden crown. Success is failure turned inside out- The silver tint of the clouds of doubt, And you never can tell how close you are, It may be near when it seems afar; So stick to the fight when you're hardest hit- It's when things seem worst that you mustn't quit.
So, it was in the spirit of my dad's favorite poem that, when I was six years old, I begged him to take the training wheels off my bike and teach me to ride. My father and I woke up early on a Saturday morning and wobbled up and down the road, me craning over the handlebars and my father running along behind holding the back of the seat. "Are you still holding?" I'd scream.
"Still holding," he'd reply, "but my hands were just off for five full seconds and you didn't even know."
"I was riding alone," I screamed. "I was really riding alone?"
"They were just off again while you were talking," he screamed back, his voice raising a few octaves in excitement. "You're on your own," he yelled. "You're doing it by yourself." And he ran along beside the bike holding his hands up in front of me.
"Really? Really?" The realization that I was on my own was too much and I swerved crazily, tried to recover, and swerved to the other side of the road. My father sprinted behind me, trying to grab hold of the seat again, but he was too late and I toppled over, bouncing off the pavement with a yelp. I popped up though, hardly feeling my knees and elbows oozing with blood. "I was really riding alone? I was doing it alone?" In less than an hour I was riding alone, a little shakily, my father trying to grab the seat whenever a car passed. Sometimes, though, I was too far ahead and he'd scream out, "Car on your left." I got so nervous, I swerved to the right, bouncing over the curb and down a steep embankment into a ditch. He stumbled right after me, picking me and the bike up out of the poison ivy, weeds and briars. "Do you want to try again? You're really getting it down."
Around noon, my dad burst through the front door, his hand on my shoulder. "Ellen, Ellen!" he screamed. "We can throw out the training wheels. Our boy is riding solo!" But my mother didn't seem to hear his exciting news. She stood silently, her eyes running systematically from my scraped ankles, past my battered shins, to my skinned knees, and finally to my mangled elbows. Her face slowly metamorphosed into a mother lioness. She clenched her jaw and flashed an angry glance at my father before she rushed to me, throwing her arms around me and hurrying me down the hallway to the medicine closet. My father stood by the door, his hands hanging limply at his side and his smiling lips drooping. My father was like a broom, sweeping me out into the world, while my mother was the dustpan, constantly gathering up the shattered pieces and putting me back together again.
My mother was a fierce protector of her children and especially of me, and especially, I think, because of my blindness. There was a fierceness under the surface, always ready to appear at the slightest provocation. When two neighborhood bullies stood in our yard, playing monkey in the middle with my baseball cap, my mother chased them down the road and whacked one across the butt with her foot. When I was uninvited to trick-or-treat with a group of boys a day before Halloween because the parents felt I would be too much responsibility, my mother stayed up till 2:00 A.M. sewing a Hunchback of Notre Dame costume with Quasimodo embroidered across the front and a huge pillow fastened on the back for a hump. Then she paraded me up and down the neighborhood, to the doors of those very same neighbors. My mother only focused on the costume's originality, on the fact that it would have won first prize in any Halloween contest. The effect on me, however, was that it made me feel exactly like the real Quasimodo.
In the summer of 1976, my parents drove me back to Boston for an appointment with Dr. Friedman, my low-vision specialist. He was excited for me to try out a new type of monocular. My thick bubble glasses helped for reading, but until now, nothing enabled me to see objects at a distance. In his office, I held the high-powered monocular up to my right eye, my only good eye, and the letters in his eye chart, twenty feet away, leaped into clear focus. Before, I couldn't even see the fat capital E at the top of the chart, but now I could read the letters, right down to the fourth line. As my parents talked to the specialist, I stood in front of the big window in his third floor office and used the monocular to stare down on people going about their business. I saw a man with brown curly hair wearing a pale worried expression as he hurried down the sidewalk, holding a bundle of papers under his arm. Where was he going so quickly? I wondered. A group of men carried large boxes from the back of a truck to the lobby of a building. I could see their faces straining. A man leaned on a railing, looking out over the Boston Harbor. Suddenly I was right there beside him, looking out over the dark choppy water. Before using the monocular, only a few feet away, faces were smooth, flat, blurry masks. The busy landscape of city streets and the endless mystery of the harbor, dotted with oceangoing ships, were beyond my comprehension. Now I leaped into the thick of the world, all vivid with color and texture and I felt for once that I was a part of it all.
After our doctor's visit, my parents took me to see Star Wars, playing on a giant screen in Copley Square. Normally I'd sit in the front row, my tiny bits of working retina only allowing me to see a small piece of the large screen. My craning head would jerk back and forth, trying, but usually failing, to follow the action. Now, though, we all sat in a middle row. With the focused monocular, I could now see about half of the screen, and it was plenty. Right in front of me were furry gorillas with giant piercing eyes and wrinkle-faced beasts whose stubby elephant trunks flopped from side to side. I literally ducked to avoid ominous space ships with large square sides spiraling into focus, shooting luminous beams of light through the dark space.
It was after the movie, celebrating my new miracle seeing-device over banana splits, that I realized my mother's protective hardness was only a thin husk, erected not only to protect me but also to protect herself. Sitting at a booth in the diner, my father attempted to explain all the large words the doctor had used to describe my disease. The words had made my disease seem important: congenital, genetic, recessive gene disorder, mutation. "There are little strips of information that make up each person," my father expounded. "Your disease may come from a defective gene encoded in your mother's side of the family."
I turned to my mom. "Thanks a lot," I joked. She was drinking a glass of Pepsi and began coughing so hard she slammed down the glass, spilling it on the table. Then, the coughing turned into crying and she had to leave the table. "I didn't mean to," I said to my father who was standing up and watching her go. "I was just joking." My seven-year-old brain had never thought to blame her, and I had never thought that she would blame herself for a microscopic defect that may have been carried through the family tree for a thousand years, generation to gen eration, never surfacing-until now. When she came back from the bathroom, I hugged her and told her that my being blind wasn't her fault, but through the rest of the meal, she only sat there, without speaking, taking short choppy breaths and blowing her nose in tissues she kept in her purse.
A powerful concoction of love mixed with guilt drove my mother's fervor to ensure my participation in all normal childhood activities. In Cub Scouts, to unequivocally guarantee that I would not be left out of any activity, she got herself elected our den mother. After dinner, we'd lie together on her big bed, which smelled of her perfumes, creams, and powders. She'd read aloud from my Cub Scout manual about how to tie knots, build campfires, and how to construct periscopes out of milk cartons. I was mesmerized by her voice, so high and even, almost musical. When I was only one step away from receiving my nature badge, she began to read out of the chapter entitled, "Bucky Badger's Road to Nature." For the last step, I was supposed to catch a butterfly and draw a picture of it, "while carefully noticing its color, texture, and design." I was disappointed because the whole process seemed immensely difficult. All a butterfly was to me was a little flicker of color. But she assured me, "Don't worry. It'll be easy." She dressed me up in an annoying matching outfit, a safari print with roaring lions, leaping zebras, and elephants spraying water from their trunks. She dressed in a pair of designer jeans and a bulky, bright red sweater that made her thin face seem even more delicate. I made her promise that when we caught a butterfly, we wouldn't kill it, but only look at it and then let it go, and she agreed wholeheartedly and said it would be fun.
She held my hand as we crossed a busy road to a field covered in prickly pine needles. First, she gave me the butterfly net and let me try to catch one, but the butterflies would sweep into my field of vision and quickly disappear. I even tried to spot them with my monocular, by pointing it toward the sky, but unfortunately, butterflies were too small and stealthy for its power. Then my mother held my hand and, with her other hand, took the butterfly net and began to run and jump and lunge, with me dragging along behind. But together, we still couldn't catch one. Then, she released my hand and continued on her own while I watched. Soon, she forgot I was there. Her bright red sweater danced and dove and then seemed to be writhing near the ground. She cursed and the sweater rose again, flashing across the field, darting, reversing, zigzagging. Then she began swinging the net at butterflies that even I could see weren't there. Between breaths, she snapped, "How do they expect a little boy to catch a butterfly?" Finally, she gave up, throwing down the net and plopping down on the hard mud beside me. "We'll try again another time," she promised.
We drew the picture anyway. I held the black marker near the tip, while her fingers held it at the top. She leaned over my head, which was pressed to the page, and helped guide my strokes. The picture turned out nice, almost as though we had actually caught one. Sitting close to me, she pushed aside her hair, and I could see her eyes up close, so large and green and open like a child's. She said that she didn't know catching a butterfly would be so hard, but that we'd do better next time. I didn't really mind not catching one. I liked the picture we had drawn, but the thought of her sad eyes made my heart swell up so tight with love that I had to concentrate on each breath, pulling the air deliberately into my lungs and then pushing it out again.
As I got older, my mother's love felt overpowering, almost suffocating, while my father allowed me to experience a touch of freedom, even if it meant flopping on my face now and then. When I was eight years old, my dad's company, Pfizer, a pharmaceutical firm, offered him a promotion, heading its human resources function in Asia. The job would require the family to move to Hong Kong. It was a huge leap, but my mother convinced him it would be exciting. We moved into an apartment on Wongneichong Gap Road. My mother enthusiastically filled our new home with dark wooden Chinese apothecary chests holding dozens of tiny drawers, tall bronze Buddhas, pearl-white lamps crammed with lines of swirling, swooping Chinese characters, and hand-carved wooden screens bearing pictures of ancient battle scenes. On weekends, we'd sail a Chinese junk, with a tall wooden mast and an elaborately painted green serpent on the sail. Each weekend, we'd dock the junk and explore a new sparsely populated island. Mark, Eddi, my dad, and I would leave my mom sunbathing on the junk and hike for hours over the mountains, thick with bamboo. As we hiked along in a line, my father would call out in marching cadence, "Up the hill, over the hill, down the hill, through the hill, sound off!"
Everyone-We love the Marine Corps!
Mark would hang back a ways, too cool to take part, mumbling things like, "Sound off. One, two. Stepped in dogshit, P U!" Ignoring him, my dad would continue in a louder voice.
Dad-Who's the best?
Eddi and I-We're the best!
Dad-Who are we?
Eddi and I-We're the Corps!
Everyone-We love the Marine Corps!
Sometimes my dad would let us hike far ahead, and we'd explore deserted beaches with names like Sharks Bay and Deep Water Bay, and climb through caves and old Japanese bunkers, left over from when the Japanese occupied these islands during World War II. Once, when my mother was away on a two-week tour of China, my dad, my brothers, and I explored a patch of land governed by Hong Kong but connected to mainland China. We crawled under a barbed-wire fence and hiked along a narrow beach. All along were signs written in such large red English letters, even I could read them, TURN BACK IMMEDIATELY, YOU HAVE ENTERED THE PEOPLE'S REPUBLIC OF CHINA. I kept waiting for my dad to tell us we had to turn back, but he was even more excited than us. "We can't let your mother have all the fun. What do you say we go explore a little of China too." Leaving the beach, we came into a village comprised of rickety wooden shacks and sandy, beachfront roads. Immediately, throngs of stray yapping dogs and intensely curious children surrounded us. The adults kept their distance and only stared suspiciously. Ready for more adventures, my father negotiated with a sampan driver who agreed to take us to an island across the bay where a market was set up. As we boarded his tiny boat, sirens blared toward us, a jeep screamed up beside us, and Chinese police wearing short pants and holding AK-47s leapt out and surrounded us. I can't imagine we struck a threatening first impression, my dad in his big floppy sun hat and my brothers and I wearing flimsy Boy Scout packs. My father was scolded by the Chinese authorities, fined a hefty HK$200 (U.S.$40), and dumped out of an armored truck back across the border. Safely home, my father huddled us together and said, "Personally boys, that was the best forty-dollar adventure we'll ever have, but when your mother gets back and tells us all about her trip to China, let's not show her up with our own adventure. Let's just pretend we were never in China at all," but I suspected that beyond his noble intention of letting my mother have the spotlight, lay the more basic intention of saving his own hide.
My brothers and I didn't have to go all the way to China to taste adventure. The chaotic city streets of Hong Kong were enough. The open markets, crowded with dark, narrow stalls, selling everything imaginable, from long thick eels drying in the sun to barrels of pickled cobras to large white clucking cockatoos. For me, with limited vision and less than ten years old, most of the excitement was off-limits. Double-decker busses spanned the fifteen-mile island, but I was never allowed to travel alone on them. When my mother was still away on her China tour, I persuaded my dad to let me come home alone from a friend's house. His permission might have been spawned as a goodwill gesture of secrecy over our China excursion. My friend walked with me to the bus stop, and when a bus, moving in the right direction toward my house stopped, I jumped on. I couldn't see the bus's number, but I knew only two busses went this way, and those were good enough odds for me. I would have eaten a barrel of pickled snakes, had both eyes pecked out by a cockatoo, lived on a double-decker bus for a year, before I would ask a friend for help. On the bus, I excitedly climbed the circular stairway to the top level and sat down in the back, but began to get a little nervous because I couldn't see well enough out the window to track our progress. I could see the dim outlines of white buildings, an occasional tree, and the gray asphalt walls built up the sides of the mountains to prevent erosion, but I couldn't distinguish whether they were the specific buildings, trees, and walls that would lead me to our apartment. I could feel the turns of the bus, and I was sure we hadn't turned right and up the long hill toward Wongneichong Gap Road, but left and down into Happy Valley. As the bus rumbled farther and farther away from my familiar home, I felt like an astronaut shot into space, watching the earth shrink into a tiny blue marble. When the bus finally stopped, I leaped down the stairs, fought my way through a thick crowd of Chinese shoppers, and rushed out the door.
That day, I definitely got to know the island of Hong Kong. Walking along, I watched a group of old, bony Chinese men playing a game with dice. They waved their arms in exaggerated motions and chattered explosively back and forth in Cantonese. One man sipped from a mason jar filled with some kind of brown, slimy liquid. Then he made a noise deep in his throat, like a cat scratching its nails on sand paper, and spat a long, streaming gob of spit in my direction that landed on the pavement at my feet. The other men laughed and, I guessed, that was my cue to move along. In the distance, I heard a steady beat of drums that piqued my interest. Wandering toward the pulsing noise, I looked out on a row of brightly colored outriggers, narrow and long, with heads of dragons carved into the front and jagged tails near the back. In the front of each, a man sat with a drum between his legs. Facing the back of the boat, they beat out strokes for their crews. From there, I ran through an alley and stumbled upon a flight of stairs, which I climbed. They stopped at a small platform, with a tiny wooden house built into the side of the mountain. To my left, the stairs continued, and even though I knew I was probably trespassing on someone's property, I burned with curiosity. For a half an hour, I zigged and zagged up a countless series of stairways, working their way steeply up the mountain. Each stairway was divided by another small platform and tiny house. Finally, out of breath at the top, I found myself in a tiny red and green pagoda with huge carved dragons guarding it on both sides. Leafy vines grew up the damp walls, and I could hear tiny squawking birds nesting near the ceiling. In the front of the temple lay delicate plates and tea cups, offerings to Buddha. Standing in the silent pagoda, its walls muffling the far- below noises of the city, I knew I had entered a place that was beautiful and sacred, a place that only the rare explorer, with patience and persistence, would ever see. Years later, I would find that this feeling was the same as I would experience on the tops of mountains.
That evening, after three more wrong bus stops, I found my way home and dashed into our apartment only a few minutes after my father arrived home from picking my mom up at the airport. "Where were you?" my mother asked.
"Oh, he was playing outside. I don't know how we missed him," my dad said, well entangled in the conspiracy. When my mother went into her room to unpack, my father drew close enough to me so I could see his angry glare. "We'll talk later," he whispered sternly. "I'm glad you made it home in one piece. A few minutes later, and your mother would have torn me into pieces."
Sadly, only four years after arriving in Hong Kong, my dad was transferred back to the New York City office, and my mom picked out a house in Weston, Connecticut, an hour from the city. Our new house lay on top of a hill, with a long, steep, circular driveway, and while Hong Kong had been a grand adventure, I preferred Connecticut to Hong Kong because I enjoyed even more freedom, every weekend riding my bike fast along the country roads, pumping my pedals up the rolling hills and flying down the other side. I never grew tired of investigating the vast, pungent swamps that formed in the summer, the rugged river cut through steep high rocks, and the empty lots, with their huge, soft mounds of dirt piled up by bulldozers, in which I could roll and tumble without getting hurt. My favorite activity became bike jumping. I'd sit on my bike at the top of my driveway wearing an Evel Knievel T-shirt and black leather gloves. After a few deep breaths, I'd launch myself down the drive, around the corner, and over a wooden ramp positioned at the bottom. I'd soar off the ramp and land on another ramp, eight feet past the first. Then I'd circle the cul-de-sac with one hand on the handle bar and the other raised victoriously in the air, waving to the imaginary crowd.
One day, pedaling back up the driveway for another jump, my bike and the ground seemed to swerve side to side and I just managed to put my foot down before I toppled over. For no apparent reason, my vision was swimming and growing fuzzy. I shook my head, closed my eyes, opened them again, and looked around blankly. I told myself that I was only imagining my diminished sight, that it was only the temporary blinding flash of the sun in my eyes, that I hadn't eaten enough breakfast, or that I hadn't gotten enough sleep; anything but the truth. I decided to prove to myself that nothing was wrong by jumping again. This time I pedaled a little more cautiously, but the brown wooden ramp, only vaguely distinguishable from the asphalt below, was approaching too fast. I hit the ramp crookedly and rolled off the side, barely managing to stay upright. Each subsequent run became slower and slower; I either popped off the side or missed the ramp altogether.
At the top of the driveway, my father was spray painting an old chest. Although I didn't notice him, he couldn't help but notice me. He grimaced each time I missed, wanting so badly to run down and command me to stop before I got hurt, but he held his ground. He knew he couldn't come running each time I confronted a challenge. Finally, he saw me give up in disgust and angrily push my bike into the garage. Saying nothing to my dad as I stormed inside, I slammed the door. My father looked at the dull wooden ramp and at the can of spray paint in his hand. Then he walked into the garage and studied the rack of different colored spray paints until his eyes stopped on bright orange.
The next day over breakfast, my father encouraged me to try the ramp again. I hesitantly pedaled down the driveway as he watched anxiously from the top. When I rounded the corner, I immediately noticed something vastly different. I could clearly see the outline of the ramp; it shone bright orange in the sun. I could smell the aerosol odor of spray paint as I hit the first ramp dead on, flew across the gap, and touched down on the landing ramp. Soon my confidence was back, and I convinced my two brothers, Eddi and Mark, to lie down on their stomachs between the ramps, so I could jump over them. They reluctantly agreed, but both flattened their bodies tensely against the pavement, their flesh quivering and their arms squeezed tightly over their heads. I soared over them in true Evel Knievel style and rode around the cul-de-sac waving my hand in victory. My brothers jumped up, swooning dramatically, holding the back of their heads while pretending they had been hit. Momentarily I was excited, but inside was a looming feeling that my life was closing in on me, that brightly painted ramps, trusting brothers, and the rock-hard stubbornness of my own brain, would not be enough to protect me from an inevitable reckoning with blindness.
The next year my brother Eddi, three years older than me, got his learner's permit for driving. I was envious. I imagined myself behind the wheel, driving with confidence, just like my dad with one arm hanging out the window, the other lightly on the wheel, and the seat pushed as far back as it would go so that my body was a little inclined. Whenever I'd ride with my dad on country roads, I'd beg him to let me try out my driving skills. I'd sit between his knees in the cab of our old Ford pickup and place my hands on the steering wheel while my dad worked the accelerator and brake. Sometimes when the lighting was good, I drove okay, but it wasn't quite what I had imagined. I had to keep my head craned forward almost pressed against the glass to see and both hands squeezed the wheel instead of one, my elbows pointed upward like vulture wings. My dad kept the truck moving slowly, so I had lots of time to react.
One sunny fall day my oldest brother, Mark, flew into La Guardia airport for a Thanksgiving holiday home from college. The whole family met him in the pickup, threw his bags into the back, and squeezed into the king cab for the ride home. As we left the highway for local roads, I began begging my dad to let me show Mark how well I could drive. So, a few miles from home Dad pulled the pickup over, and I scooted myself into position, and we rolled forward very slowly, but the zigzagging shadows cast by the trees overhead and the bright sun reflecting off the hood almost obliterated my vision. I steered into the right curb and then, recovering, into the left curb, the whole time my father, Mark, Eddi, and Mom screaming out, "Left! Right! Now left! More left! Right! Right!" The truck lurched from right tires to left tires, left tires to right tires. The frame of the truck creaked and ground against the axles. My mother rolled down the passenger window, and her face must have been a little green, because Eddi said, "You feeling okay, Mom?" She didn't respond, but when he next said, "This is better than Mr. Toad's Wild Ride at Action Park," she elbowed him in the ribs. I tightened the muscles in my face, trying to stop myself from crying. The tears only made my vision blurrier. Finally my dad took over, and my mother took a few deep breaths. "You should've seen me last week," is all I managed to say to Mark.
Later I lay on my bed, my face in my pillow, when Mark came in and stood over me. "Great job today," Mark said.
"Yeah right!" I replied, surprised.
"I'm serious. I know what you were doing."
"You do?" I asked.
"Yeah, it was obvious. You were avoiding the potholes. I think you avoided every one of 'em." Then he bent his arms in front of him, holding an imaginary steering wheel, and began swerving crazily around the room, with his feet moving in exaggeratedly tiny, fast-motion steps. He motored toward the bookshelf, then the nightstand, and then the chair, each time with only an inch to spare and without losing stride, performing a perfect 180-degree turn.
"Oh ma God!" he cried out in a high-pitched granny's voice. "Look out! Help! Help! There ain't no stopping me now! I'm out of control! Look out for the potholes! I'm comin' through!" Reprinted from Touch the Top of the World by Erik Weihenmayer by permission of E. P. Dutton, a member of Penguin Putnam Inc. Copyright (c) 2000 by Erik Weihenmayer. All rights reserved. This excerpt, or any parts thereof, may not be reproduced in any form without permission.