One More Step: My Story of Living with Cerebral Palsy, Climbing Kilimanjaro, and Surviving the Hardest Race on Earth Read online

  Afterward, I stumbled over to introduce myself to Jake, who was now back sitting in his buggy, his parents on either side and his father’s marathon medal around his neck. Jake was a big four-year-old boy, probably three feet four inches tall and lean because of the constant involuntary flexing of his muscles. His head was bent sideways. His arms were crooked and rigid, and his fingers knotted. He had flawless pale skin, and his blue-green eyes seemed to take me in with a long glance. As I took his hand and said hello, his face remained expressionless. We were together a minute, maybe two.

  As soon as I got home, I took an ice bath and collapsed asleep. The next morning, I lay in bed, unable to move. My body felt encased in concrete. After a while, I had to urinate, but I couldn’t even move my legs out over the side of the bed. I rolled out of bed and onto the floor. Then, using my arms, I dragged myself caveman-style to the bathroom and pushed myself to my knees using the washstand. I still made a terrible mess, but I didn’t care. Never before had I experienced such terrible pain.

  A few hours later, having called in sick to work and now beached on the sofa, I was drifting in and out of sleep when the phone rang.

  “I’ve some sad news,” said Paul Pulver as a hello.

  “What?” I asked.

  “We lost little Jakey last night,” Paul replied.

  “What?” I repeated, not understanding, not wanting to understand.

  “Jake Robert passed away last night in his sleep.”

  It was a simple thing that killed him: some mucus caught in his lungs. Most kids would easily have cleared it in their sleep. Jake could not, and he had died sometime in the early morning hours. There had been no sign that anything was wrong. The opposite, really. After the race, Jake was happy to be the subject of a bunch of photographs, surrounded by his grandparents, brothers, aunts, uncles, parents, and friends of the family. After a celebratory lunch, the parents and boys went back to their house in Yorba Linda.

  Steve kissed him good-night and then tucked his other sons into bed. Eight-year-old Tyler, who considered himself Jake’s protector, looked Steve right in the eye and said, “I will always take care of Jake.” Alison put their newborn baby, Brady, to sleep, and then went in to ready Jake for bed. She put on his pajamas, brushed his teeth, and tucked the dolphin Tyler and Zach had recently won at the carnival under his arm. She laid out the green UCP T-shirt for him to wear again to school the next day to show his teachers, switched on the humidifier, and kissed him good-night. On his desk were the flash cards she had just made to help him learn how to communicate with his eyes.

  The next morning, the family went about its routine. Jake usually slept late, so Alison took Brady with her to drive the older boys to school while Steve stayed in bed, still hurting from the marathon. When she came home, Steve was taking out the garbage for the Monday pickup. Alison went into Jake’s room to start his day. He was always a light sleeper, but he didn’t stir when she came to his bedside. She went to pick him up, and he still didn’t move. Then she saw his still face, and she knew.

  A scream erupted from her as she gathered Jake in her arms and ran out of the room. Hearing her, Steve ran inside. Alison was coming down the hallway.

  “He’s not breathing,” she managed.

  They put Jake on the carpet. Alison hurried to call 911, as Steve tried to resuscitate their son. He gave him mouth-to-mouth and chest compressions, but the air just came right out of him. Steve knew he was dead, had been for a while.

  “He’s gone,” he kept saying. “He’s gone.”

  The police arrived first, then the paramedics, then their family and their pastor. Steve and Alison held each other, not wanting to let the other go. In the first moment of calm, Alison turned to Steve and said, “We have got to stick together and support each other, because losing a child is one of the fastest ways for a family to break up.” Steve never knew how much he loved his wife until that moment: even in her grief, her first thought was their marriage, their family, not herself, not her loss.

  Medical personnel from the coroner’s office came and examined Jake’s body. Already Alison and Steve were torturing themselves over what they did, what they didn’t do, what could have caused their son’s death. The police wanted to ask Steve and Alison some questions; they had their job to do.

  A member of the coroner’s staff, a middle-aged woman, came to their side and said, “Unfortunately, we see a lot of this. We see deaths with fragile kids. The hardest thing about it, they’re not well taken care of, usually neglected or abused. Your boy was so beautifully taken care of, just seeing his hair, looking at his well-trimmed nails, looking at his whole body. He’s perfectly clean and flawless, and I know it’s because he had a mom and dad who took wonderful care of him.”

  It was a small act of kindness in an otherwise uncommonly cruel day.

  Much of what occurred that morning I learned only later. On the phone, Paul had few details, but he thought I should know. There would be a funeral in the next few days, he said, and as soon it was set, he promised to tell me the arrangements. The conversation was short.

  Sitting on the sofa, I felt the world shatter and fall apart around me. Everything sort of just went dark. I could neither see nor hear anything. I was reeling, truly reeling, for the first time in my life, yet I couldn’t grasp why the death of a boy I had met for only a moment hurt so bad.

  I wondered if it was survivor’s guilt; after all, I had been spared such a severe case of cerebral palsy. Maybe it was because Steve was the first person who had ever told me I was an inspiration. He said I had given him hope for his son; now that hope was gone. Maybe it was the thought of Steve and Alison enjoying such wonderful moments with their son one day, only to find themselves huddled over his body the very next. Their boy was gone from them, and there was nothing they could do but suffer it. Maybe it was all of these things—or none of them. All I knew was that Jake Robert called up a lot of memories in me, and his passing struck too deep to push away.

  Pain. Deep, uncompromising, constant physical pain, from the arches of my feet up to my back. Not a single day passed without pain. Pain was part of my nature, who I was, from the time I was born.

  Early on in my life—well before there was an explanation for this pain—I learned what to do with it. With no option to live my life without pain, I learned to put it away, to store it in some part of myself, so I could do, and be, in the world. My earliest memories of this doing, this being, centered around banging into things, tripping, and falling. Crossing the family room, I slammed my foot against a table leg, which had not seemed to be anywhere in my vicinity, and broke some toes. Hopping up the front steps to my house, I tripped and chipped a tooth. Running down the sidewalk with our black Labrador, Muffin, I tumbled and sheared off most of the skin on my knees. Climbing up to a treehouse, riding my skateboard, tumbling from a rebound on the basketball court: multiple fractures, a steel plate and screws in my arm. Toes, fingers, wrists, arms, ankles, I broke them all, but there was no stopping me—and, indeed, nobody tried. That was not my family’s way.

  As far as I can recall, my parents never said, “Be careful,” or “Bonner, you shouldn’t do that.” They knew something was wrong with me, but nothing was said about it to me for years. They treated me the same as they treated my two older brothers, and they expected the same out of me. At the heart of that treatment was tough love. No crying. No whimpering. No complaining. Get out there, try hard, make mistakes, take your lumps, learn from them, and try again.

  The master of this school of tough love was my mom’s father, my “Bompa,” Dexter Paddock. His was a my-way-or-the-highway kind of world. Wobbling lips, fear, hesitation, excuses—they had no place with him. Every morning, rain, shine, winter cold, or stormy swells, he headed out of his house in Laguna Beach, wearing only his red swimming trunks. No towel, no shirt, no sandals. A five-minute walk later, he was swimming north up the coast for a half mile; then he did the half mile back. Every morning, same swim, 365 days a year, all the wa
y to his eightieth birthday.

  I was a Paddock, and a Paddock learned at seven years of age how to swim in the ocean and battle those terrible riptides off West Beach. Not long after my birthday, he took me down to the beach, pointed out a riptide, and explained as he had many times before how to escape it. I shouldn’t try to swim against the current; rather, I needed to swim parallel to the beach. But this time, he took me in the water with him to actually do it.

  Bompa said, “See here. The rip’s got us. You’ll need to get yourself free.” Then he swam away, back to the beach.

  Bottom lip out, half in tears, I was scared, but I knew I needed to suck it up and do it. The riptide swirled around me. Caught in it, I felt its power draw me out to sea. I panicked a little, but then remembered his instructions: “Don’t swim against the rip. Swim sideways out of it.” A few seconds later, I was free, and Bompa congratulated me when I returned to the beach, still shaking.

  Usually, though, I didn’t need to be forced. Growing up in southern California, we were always outside, and I loved sports: baseball, soccer, basketball, swimming, and tennis—whatever the court or field. My upper body, especially my hand-eye coordination, was the bomb; my lower body, the destruction that followed. Unfortunately, most sports required the two to work together. I chose positions, like soccer goalie and baseball catcher, that best suited my strengths. I thrived on the competition, but spent a lot of my time enraged, kicking goalposts and fences, breaking rackets, punching the ground, cursing my body for what it couldn’t do, or do well enough, or fast enough, or for long enough. Whenever teams were picked for a game of soccer or basketball, I was chosen last among my friends, no matter how hard I tried to be as good as they were. The hours of shooting baskets at the playground or kicking the ball against the garage door just didn’t seem to do the trick.

  Meanwhile, my brothers, Mike (eight years older than me) and Matt (almost three years older), excelled easily at sports. They piled up so many trophies, medals, and ribbons on their shelves that they could have opened their own shop. In particular, Mike was an all-state all-star in just about every sport he played. He had a body like a shovel, with wide shoulders and a narrow waist. The girls loved him. He was on the inside of a world that I feared I would remain outside of forever, my nose flattened to the glass.

  My family never treated me any differently, but I knew something was different about me. A master detective didn’t need to be on the case. After all, my brothers never wore holes in the toes of their shoes every few months, earning that look from our mother: Off to the shoe store again. None of my friends and neither of my brothers were fitted with bright-white fiberglass casts on both legs up to their hips that made them walk like Frankenstein’s monster whenever they did go out. One cast might have been fine: anyone could break a leg. But both legs? There was something strange about that, and no way to hide it.

  Mike and Matt were not treated like lab rats, off to a new doctor every few months, told to walk here, walk there, prying eyes watching every movement. They were not stuck into this machine and that machine, every part of their body probed, scanned, pricked with needles.

  Then there were the plain facts that I looked different and moved oddly. I had these huge, floppy feet (size 11 by sixth grade). My string-bean legs and knobby knees were impossible to hide living in a place where kids wore shorts almost every day of the year. Wherever I went, my ankles flew wide, my knees touched, and my feet made this big slapping sound. There was no creeping up on anybody. “Thumper!” the kids jeered as they heard me coming down the hallway.

  Oh, yes. They called me that, and lots of other names besides, in school and at the playground. “DeCalf,” the kid without calves—that was one of the clever ones. The most obvious, “Boner” (instead of Bonner), was the most common. They would shout it while mimicking my gait, slapping their hands against the bottoms of their feet, making sure I could see.

  Whenever I fell, the walls and playing fields echoed with laughter. The bullying was painful, like a punch in the gut during kickball. Many of those moments I have blocked out, just as I did the puzzled stares and under-the-breath comments from adults and children alike whenever I crossed the street. I could hear them thinking it, even if they were out of earshot: Something is different about that boy, but what is it?

  In the days after Jake passed, I thought a lot about my childhood. I felt I was being given a choice. I could dismiss Jake’s death and his family’s agony by telling myself that bad things only ever happen to other people. Or I could stand with Jake, for him, like the brother I felt I was. For all my falling and breaking bones, for all the doctors’ visits and exams, for all the jeering at games or in the hallway, I was lucky. I could walk and run. Not smoothly, but I could walk and run. I had the freedom to go where I wanted, when I wanted—a freedom Jake and Paige Dunning and many other kids with cerebral palsy would never have.

  I sat in one of the back rows at Jake’s funeral, unknown to most of the mourners in the church that morning. There was lots of music: a drummer, an electric guitarist, and three young women with beautiful voices. One close family friend of the Roberts’ read Psalm 23, “The Lord Is My Shepherd,” and another quoted William Wordsworth about the death of his own son: “For myself I dare not say in what state of mind I am; I loved the Boy with the utmost love of which my soul is capable, and he is taken from me—yet in the agony of my spirit in surrendering such a treasure I feel a thousand times richer than if I had never possessed it.”

  One speaker after another approached the pulpit to share their memories of Jake, tears running down their faces. His aunt talked about how handsome he had been and his many nicknames: “Jakey Bear,” “Jake-a-bake,” “Jacaroni,” “Jakarama.” Another speaker talked about the glorious day at the marathon and how thankful she felt that Jake’s last day had been so full of joy and family. His eight-year-old brother, Tyler, with his spiked hair, brave face, and little trembling voice, spoke of Jake in the present: “Jake is my little brother. He comes to all my games. He watches me play. He smiles when I’m around. I can make him laugh. Even though Jake’s body is not with us anymore, I still have three little brothers. I love you, Jakey.”

  Then it was Jake’s grandfather’s turn. Jud Robert was an enormous presence, a man who looked as though he had seen a great deal of life, both its ups and its downs. His voice barely shook, but in his words the emotion was clear.

  “Our family has been wounded severely. The fact that Jake is no longer with us is incomprehensible. We’ll never be the same, and we won’t pretend that we are,” he said.

  The whole church seemed to crumble at this statement, myself included.

  “I have a grandfather’s bias,” he continued. “But, put simply, Jake was perfect. Jake never had a bad thought. He never rejected anyone. He never prejudged. He never hurt anybody. He was never selfish, never jealous. He never sinned. He only loved, and in his essence he was love. Some in the world looked at him, saw his body, and they didn’t get him. He was perfect. He taught us all to have faith and never give up despite the odds. He taught us where God meets us in our lives, and he taught us to love at a level far deeper than we’ve ever known. He taught us what’s important and what’s not. . . . Jake will live on here. He will live on with the UCP Foundation, and he will live on in all of us with whom he connected. God bless.”

  Shortly after he sat down, I felt compelled to make my way to the front of the church and say a few unrehearsed words. Through a choked voice, I spoke about how odd it felt to be standing there, as I had known Jake for only a few minutes. Then I explained that I too had cerebral palsy, and that it had taken me thirty years to admit it openly. I got a few laughs by recounting how Steve had cajoled me to run much more of the race than I was able to. I finished by saying, “I ran those last 3 miles for Jake, because he couldn’t. I’ll continue to run, as long as I live, for him.”

  Later, when Steve and I had a quiet moment together, I promised him that I would run the marathon the nex
t year, every single long mile of it, for his son.

  3

  Swimming in the Riptides

  No way you have that! What exactly does that mean?”

  “How did I not know? Wow!”

  These were two of the typical reactions I got when I first started telling people I had cerebral palsy. One uncomfortable conversation followed another—uncomfortable more because of my own hesitation to speak about it than anything else. All I had ever wanted was not to be defined by others by what had happened in the first seconds after my birth. But now, as I geared up for the Orange County Marathon in January 2007, I was forcing myself, no matter how uncomfortable, to be more open.

  My fund-raising messages spread the news fast and wide:

  I have cerebral palsy. I am running the race in honor of a young boy named Jake, who died recently. We shared the same disability. Jake’s father said I was an inspiration to him and to his family, and their faith in me drives me to do even more for our community. Please support me.

  Before sending the e-mail, my finger had hovered over the “Send” button for a good minute, perhaps more, but then it was done. Keeping Jake in mind and telling his story first, instead of mine, helped with every conversation after that. Here was this amazing boy. He had the same thing I do. Now I’m giving voice to his struggle and, through it, to my own.

  While I prepared for the marathon, training and raising money, I slowly grew more comfortable with this outward stance. At last I was freeing myself from years of hiding and lying to those around me. But it did not come easily, and sometimes I just wanted to take it all back. No need to look any closer. All is well, perfect, and in order here.