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

  I couldn’t stuff my CP back in the closet, but as far as how I looked at myself, all was still perfectly in order and normal about me. That was how I had always been taught to be, no matter the evidence to the contrary.

  Growing up, I was named Bonner Paddock Rinn. My family lived in a nice ranch-style house—one story, three bedrooms, and a stately oak tree in the front yard. Out back there was a swing set, lots of grass to kick a ball around in, and even a treehouse. There were lots of kids in the neighborhood, a middle-class suburb nestled in the hills of Arcadia—the sons and daughters of stay-at-home moms and professional dads (doctors, lawyers, teachers, engineers). My mother drove a Mercedes 240 diesel, which we called the “Slug” because she drove it so slowly, and my dad a big Oldsmobile station wagon. We played soccer, baseball, and tennis and took swimming lessons at the local pool. We went to church every Sunday, all three of us boys in matching outfits, and made frequent visits to our grandparents in Laguna Beach for some time in the sun and surf. Short of the white picket fence, we could not have been more normal: the picture-perfect American family. And any wrinkle there might have been in that picture-perfect picture? That would not have been seen by the outside world.

  My mother, Andrea Paddock, was the guardian of the picture-perfect family. She came by the job fairly. Her family was Old California, all the way back to the pioneer and Gold Rush days. They owned lots of land and big houses and had a name that meant something. My given one came from my great-great-grandfather Elmer Bonner who owned a pharmacy in Pasadena back in the early 1900s. When Andrea was fourteen, her grandmother took her on a whirlwind tour of Europe, one followed by the local newspaper. Andrea’s father, Dexter (Bompa), was in the navy during World War II, where he helped test and design experimental underwater breathing systems, and after that he had a long, secure career working in the insurance industry.

  Bompa was a man of rules and regimens. Apart from the daily swim, he ate the same meals every day almost without fail: cereal with skim milk for breakfast; one slice of bread folded over turkey, gouda, and mayo for lunch; a protein (either meat or fish), a veggie, and a starch (usually rice) for dinner; then a big dessert and a smoke of his pipe in the living room. This discipline and rigidity were counter to Dexter’s own father, who was an alcoholic womanizer who liked to bet on horses. Dexter demanded that his two daughters conform to his upstanding, no-nonsense world, even if it meant that they often ran aground on its rocky shore. He loved them, but it was a hard kind of love.

  My father, Tom Rinn, was a civil engineer, and a brilliant one at that. Raised in the Midwest, he worked for the Metropolitan Water District of Southern California, the world’s largest wholesaler of water. It was his calculations for charging for the volume of water flowing through the state’s aqueducts that kept water pumping steadily throughout southern California. But for all his smarts and ability, Tom didn’t seem to find much worth in himself. When he was growing up, his family was very much on the outskirts of the community. His father suffered from a severely curved spine and was labeled a “hunchback.” As a boy, if Tom was ever asked to a birthday party, his mother would ask why would such-and-such a kid would have invited him.

  Tom and Andrea met at UC Berkeley in the 1960s. Tom and his best friend and roommate, John McConnell, were introduced at the same time to the tall, athletic psychology student. John, who was six foot nine and brimming with all kinds of confidence, swept Andrea off her feet. Tom? Well, Tom was best man at their wedding. Everything looked to be going perfectly. Andrea gave birth to her first son, Michael. Michael was a healthy, bouncing baby boy. John was a highly sought-after computer engineer, just biding his time before he would pick whatever prime job offer he wanted.

  Then John dropped the bomb. He was heading to Menlo Park, California, for a gig with IBM, and Andrea and their son would not be going along with him. John had fallen for the girl who had typed his master’s thesis. They had been having an affair for months, even while Andrea was pregnant. After their divorce, Andrea returned to southern California, where Tom was already working at the Metropolitan Water District. Tom wanted to marry her, and she agreed. Just before the wedding, Andrea got cold feet and told Tom that she wasn’t sure she could go through with it. He thought she was only nervous and convinced her that they would be good for each other.

  To the world, the newlyweds were happy and suited to each other from the start. For the next eleven years (and the first eight years of my life), we were the Rinns of Arcadia. Nice house, nice family, picture-perfect. On Monday, Tom left the house with his suitcase and returned on Friday, after a week of traveling for work. There was little connection between my parents even when they were together. Tom and my oldest brother, Mike, had a very strained relationship, and their fights would echo throughout the house. As for the silences at the dinner table between my parents, the measured jabs, the joylessness of their life together, we all just swallowed it.

  Finally, when I was eight, my parents gathered me and my brothers on the blue plaid couch in our living room. They sat in chairs opposite one another across a low table. As I stared at the old oil painting on the wall of a ship crossing the ocean, my mom said that Dad was moving out for a while. I kept repeating, “I don’t understand. I don’t understand.” Months passed, and Dad didn’t move back. He never would. “Moving out” eventually turned into a six-year separation and finally divorce.

  The spare relationship we had with our father became sparer still. Every other weekend, he came over to the house to fix something or do the yardwork. I used to hang out on the porch steps, waiting for him to finish, so we could throw the ball together. The way I saw it, he would only play if I asked. He never offered. The same with checkers or Connect Four. Now, everything I asked him to do he would do, but it always felt as if he was obliging me, that he didn’t really want to be there. The father of the family next door taught me how to ride a bike and how to throw a spiral with a football. On Boy Scout camping trips, I was almost always the only one unaccompanied by his father. During the summer and spring breaks, he took us on long trips, once to Disney World, another time to England and Scotland. We went sightseeing and kept busy, but again rarely interacted. Dad was quiet, rarely venturing more than a few words at a time, and often only if prompted.

  If my dad loved me, it was a love that burned too deep inside himself to give off any warmth. My mom only drove the wedge farther between us. Whenever the chance presented itself, she would make subtle swipes. “I’d invite your father to your game,” she would say, “but I don’t know if he’ll come.”

  Raising three boys, mostly on her own, while working as a substitute teacher at local schools, Andrea could have used the help, but she always seemed to be in control, and she often exerted it through manipulation and blanket punishments. If I wanted to go to the park, she would lay on the guilt trip: “Oh, I was hoping to have your help around the house, but, I mean, you go have fun.” If I said I was going to have dinner at a friend’s house: “Oh, you won’t be home? Okay. It was going to be your favorite—meatloaf. That’s fine, though.” She never came out and said what she wanted or why she wanted it. Same with her punishments. If I didn’t want to go to church, then I was grounded and had to stay in my room for the day, no TV, no nothing. If I was crying, I had to go to my room. We never discussed why was I crying. We never talked about what might be wrong: why I might not want to go to church, why I might prefer to have dinner at my friend’s house.

  The farther Mom’s life got from her ideal, the harder she tried to maintain the image that everything was okay, to stay the course. This rigidity was her retreat, a course opposite to the one that her sister, Vicki, took, but incredibly destructive in its own way. Her older sister left southern California for the woods of Oregon. She was the flower child of the 1960s, the one who ate, drank, and smoked when she wanted, however much she wanted. No rules of her own, no adherence to society’s rules. In the end, she succumbed to the family curse of alcoholism, drinking herself to de
ath before she turned sixty.

  We lived in Mom’s house, and we played the roles she expected of us. Do the right activities. Get the right grades. Be the perfect boys. We tried to fit into the mold as long as we could, wanting to please her. Whatever was outside these roles got buried. At fourteen, my brother Mike was struggling with his sexuality. When he watched TV, he always found himself looking at the men, not the women. He told Mom he was gay, and to him, her reaction was clear: “Don’t be one of those people.” He felt shut down and vulnerable, deciding instead to throw himself into dating the most beautiful girls, playing every sport, and rushing the craziest fraternity.

  My cerebral palsy was different in some ways, but the same in others. Mom did what she could to help me, but whatever my issues, it was private business to be put aside everywhere but the doctor’s office. The view essentially was: “Bonner has CP, but it does not define him. He is the same as any of us. Period. End of story.” We absolutely never spoke about my disability, whether at the dinner table or to the world outside. My middle brother, Matt, didn’t have any knowledge of my diagnosis until years later when we had all grown up and moved out. Whatever struggles Matt had of his own, he buried them inside himself, like my dad did.

  Throughout these troubled times, my sanctuary was the home of my grandparents, Bompa and Bomma. We spent many weekends and summers at their Laguna Beach house when we lived in Arcadia. Then, when I was thirteen, we moved to Mission Viejo, only a handful of miles away from Laguna Beach, and spent even more time with them. As my dad and I grew apart, Bompa was our father figure and my true north. He was a tough man, hard from his calloused feet and gnarled toenails all the way up. There were no games with him. You told the truth. You didn’t show fear. You were on time. You never quit on something. You sucked up defeat, and you kept going. You gave it your best.

  Bompa lived by these rules, and he expected us to do the same. I learned many of them while we played on the beach or swam in the ocean with him, hour after hour from dawn till dusk. Retired, he had lots of time for us. Later, I would understand that he was much easier on us than he had ever been with my mom and her sister. There were never any physical punishments from him: Mom had forbidden it.

  After high school, I was eager to be free of everyone in my family except Bompa. But my average grades didn’t exactly make me a shoo-in at an Ivy League school. We were also cash-poor. With the limited amount set aside by my family and the meager sum I earned slinging burgers at McDonald’s and packing groceries at the local market, I couldn’t pay for more than a couple of years’ tuition at a state university. Instead, I enrolled at the local community college to study business.

  The summer after my first year, I played a lot of soccer in an indoor league. As the goalkeeper, I didn’t have to run much; plus I had big hands, a long reach, and some pretty good hand-eye coordination. One night after a game, the assistant coach of Concordia University pulled me aside and asked if I wanted to try out to be their goalie. A week later, I had a college scholarship. Yes, an athletic scholarship. Granted it would only cover part of my tuition and it was for the team of a small religious school that had gone winless (a big 0–19) the year before, but for me it was as if I had been chosen to play for Manchester United.

  Manchester United we were not. We lost almost every game my freshman year. Still, college athlete? That was better than normal. I had shot up in height. My body filled out. I was living away from home, no connection to poor old “Boner.” Nobody needed to know about my CP or about the shooting pain I experienced after games from my ankles rolling over again and again.

  In my sophomore year, Concordia recruited a better goalie. I sat on the bench; we kept losing. I was ready for the big college experience and transferred to San Diego State, joined a fraternity, drank a lot, dated a lot, worked out a lot, and studied very little. I had mastered hiding my awkward stride and putting off answering any questions when it was noticed. With a hearty laugh, an easy way with meeting people, and an always-ready-to-go attitude, there was nobody on campus more the quintessential party frat guy than I.

  I drifted away from my family and finally had a complete break with my dad the summer leading into my senior year. It started as a fight over his refusing to help me more with the cost of college and ended with my shouting at him for never being there for me when I was a kid. Soon after, I changed my legal name from Rinn to Paddock, giving my grandfather someone to carry on his family name and honoring him for everything he had done for me.

  There was never any doubt about what I would do after graduation. My brother Mike said I was tailor-made for sales. The uniform company Cintas hired me right out of college. I rented a house in Pacific Beach, just north of downtown San Diego. Flush with cash, I partied even more than I had in college. My time with Cintas led to a job with the payroll company ADP, then to a small sports marketing company, and finally to the Anaheim Ducks.

  From a thousand feet up, I was living a perfect, normal life. It was the one I had been taught to follow. But by then Mike and I had drifted apart as well, so I had separated myself completely from any honest connection with the people closest to me, my family. And I was lying to myself—and everybody around me—about a fundamental truth of my daily existence: my cerebral palsy.

  It took a nudge from Henry and Susan Samueli and the death of a small boy for me to shift course, but on this new road I still felt lost.

  The morning of the 2007 Orange County Marathon was dark and cold, and on the way down to the race, I was terrified. My 16-mile run with Steve the previous year had almost ruined me. I remembered how my body had broken down, and now I was asking it to go another 10 miles beyond that. There was no way I would not finish, and that just intensified the fear of what I was about to do to myself.

  I met up with the Robert family before the marathon’s start. They provided a keen reminder of why I was there in the first place. Steve thought they could honor Jake by running in the race together. Alison had not wanted to come back to the event, but hard as it had been, she had agreed, and she, Steve, Tyler, and Zach (now ten and eight) signed up for the half marathon. When they told their family and friends, a whole bunch of them volunteered to run as well. Over forty people now clustered together at the start, all sporting T-shirts with Jake’s smiling face and the words “Team Jake.”

  In the corral behind the starting gate I met up with my running partners for the day, Karla and Melissa. Friends from San Diego State, they were both in pretty mean shape and promised to run part of the course with me. They calmed me down with cracks like, “Bonehead, why are you making me do this?” followed by laughter.

  Finally, the gun banged, and we were off—or were going to be once the thousands of others ahead of us cleared the start. The going was all good up the first hill, but then it had been the year before too. This time I kept the pace nice and slow. I wouldn’t be fooled again by the adrenaline. No way. Not me. This was in the bag. Five hours max.

  For the past year, I had trained as best as I knew how—or as best as advised by any quick Google search. I followed a training grid and ramped up the miles week after week. Occasionally I hit the gym and lifted weights. Three months out from the marathon, my body began resisting the steady increase in distance. My knees and ankles screamed once I hit the 10-mile runs in the hills around my apartment in Newport Coast. At the end of a 13-miler, I veered off the road into some bushes. Sheer exhaustion. After that, each time I tried to run, I just didn’t have the energy. I decided to simply rest for the final eight weeks, hoping that enough strength had been built up in my legs. If not, my commitment to finishing the race would get me the rest of the way.

  From my first fund-raising e-mail, the support had been overwhelming. Most started off the conversation with, “No way you have cerebral palsy!” followed quickly by, “It’s incredible what you’re doing.” Relief blended into comfort, then confidence, and finally excitement. I felt proud that I had come clean. I was empowered to speak more and more about why
I was running the race. Contributions rolled in at a far faster rate than I could ever have imagined. My boss and coworkers at the Ducks made donations, and people I didn’t even know threw money into the pot. By the day of the marathon, I had raised over $30,000, a huge sum, and a show of faith that I could not disappoint by bowing out of the race early.

  Which was easier said than done. Nine miles into the marathon, I was struggling. Running was not a natural movement for my body—or, more accurately, for my brain. The muscles in my legs never worked in sync. Everything in my body was tight and rigid from the start. With each stride, my ankles bowed out while my knees almost touched, making my legs looking like eggbeaters. There was never any balanced strike of the forefoot. Mostly, I landed on the inside of my foot, rolling inward on my big toe. Because of the stiffness in my lower back, I ran hunched over, and because of my equilibrium issues and lack of balance, I had to concentrate on the ground in front of me to keep me from falling. As I tired, these poor mechanics became downright poverty-stricken. Fatigue multiplied, particularly within my large muscles (quads, hamstrings, and calves). This left my smaller, supporting muscles to bear more of the strain, and they weren’t up to it. That’s a lot of anatomy to state the fact that I was not born to run.

  By the race’s midway point, this was clearer than ever. Melissa, who was battling knee pain, diverted off to finish her half marathon, while Karla kept at my side, fighting her own fight. We spoke about Jake, about what life must have been like for him, trapped inside a body that simply wouldn’t work. He never ran. We had to do it for him, because we were lucky enough to have legs. We were half joking, because right then and there those legs were absolutely killing us.

  By Mile 16, way out by the El Toro marine base, I couldn’t speak, let alone joke around. I grumbled answers to Karla’s questions, and soon she stopped asking them. She had prepared to do only the half, but had kept me company, and she was falling apart. A few miles later, Melissa was waiting to pick her up. I was clearly hurting, and Melissa decided to jump back into the race to help me. She made it another mile before her knees forced her to stop.