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

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One More Step: My Story of Living with Cerebral Palsy, Climbing Kilimanjaro, and Surviving the Hardest Race on Earth Page 12

by Bonner Paddock


  After a twelve-hour sleep, we trekked down to our van. I hugged Minja and thanked him for being my “guardian angel” on the mountain. Minja clamped me on the shoulder, and then we bundled inside the van for the return journey to Arusha. As we drove back, the others regaling each other with remembered details of the epic adventure, I looked out the window and thought only of how I had narrowly escaped disaster. It took two baths and one shower to wash away eight days of sweat and dirt. Nothing eased my body from hurting with every movement. That night we gorged on barbeque at a Middle Eastern street café that doubled as an auto shop, and the team reveled again in what we had accomplished.

  We spent the next few days touring Serengeti National Park by Jeep. We saw giraffes, lions, zebras, elephants, leopards, Cape buffalo, and even a black rhino that charged us across a treeless plain. From there, we traveled to the Ngorongoro Crater, a huge expanse of green inside an imploded volcano. While the others were filled with nothing but celebratory “oohs” and “aahs,” I was having trouble enjoying any of it. My body, from my swollen feet upward, was in a lot of pain, and I was crippled with exhaustion. As much as Tanzania was stunning at every turn, it was tough to sit in the Jeep for hours, my legs cramped, bouncing up and down pot-holed dirt roads, when I wanted to do nothing more than eat (my appetite was off the charts), sleep (no amount seemed to be enough), and get back to what I knew (my comfy bed, burger joints, and sandy beaches).

  But more than impatience for the familiar, something else was disturbing me, something deeper. One morning, while the others were heading out on an amazing safari inside the crater, I wanted only to remain behind at the lodge by myself. I didn’t want another day reveling in our success on Kilimanjaro, because the truth was, I felt none of it.

  Everything about the climb unsettled me. Clearly, I had arrived on the mountain ill-informed and unprepared. I had barely survived the summit attempt. Kilimanjaro had exposed my disability—and the limitations it put on me—in a way I had never expected or experienced in my life. Worst of all, though, was how I had drawn on a parade of ugly memories about my cerebral palsy and family—not to mention an anger that I’d never known existed—to push through the darkness to the summit. Now confronted with these memories in the light of day, I found they were not easily stuffed back inside. While my friends still basked in the afterglow of our effort, these raw emotions from my past plagued my thoughts, along with the recognition that the act of climbing a mountain had not been enough to conquer them forever. On the contrary, instead of filling the void, it seemed the climb had dug the hole deeper.

  At the same time, I could not shake my memories of the Usa River School either. As I sat in my room, looking out at the beautiful vista of Ngorongoro Crater but seeing none of it, all I could see were the faces of the children, their bare quarters, and the stand where they hawked their simple wares to keep a roof over their heads and food in their mouths. Their resiliency went beyond anything I could find in myself. Time and again while I was climbing, their song had been the only bright light leading me onward. Envisioning those who never made it there, locked in cages or left abandoned on the side of the road to starve, broke me in half. They had a right to live, a right to the best life possible, and it made me feel small to think that shortly I would just hop on a plane and leave them to their fates.

  After another day at Ngorongoro, leave I did. From Arusha I boarded a flight to Amsterdam, then took my connection on to LAX. Three weeks had passed since I left, and it seemed like another lifetime. When I drove up to my apartment, I discovered my neighbor’s teenage daughters had covered my garage door with butcher paper and painted a mountain and the words: “YOU DID IT! CONGRATULATIONS, BONNER.” Much as I appreciated the welcome, I was a long way from being done with anything.

  Rest and stay off your feet as much as you can,” Dr. Aminian prescribed.

  Six weeks after returning to the United States, I was still a mess. My climb had brought a cascade of publicity, and many wanted to know what adventure was next, but I couldn’t even fathom the idea. Because of my CP, my body was slow to repair itself after the punishment I put it through on the mountain. Just prying myself from bed every morning was a struggle. Eight hours. Ten. Twelve. Fourteen. No amount of sleep or downtime could banish the exhaustion that hung over me. It was like mono on steroids. At every meal I wolfed down everything on my plate—and often seconds as well—yet I was still hungry. Those constantly flexing muscles, now trying to recover, burned a lot of fuel. And my feet, my poor feet. Throughout the day, they swelled like balloons inside my shoes, and by closing time at work, I needed to loosen the laces completely or slip the shoes off altogether.

  My doctors, Millhouse and Aminian, ran a battery of tests on me. Full physical. Blood work. Pee in the cup. The works. Beyond plantar fasciitis and some strained tendons in my legs, everything, including my hormone levels, was fine. In nonscientific terms, their diagnosis was that I had badly abused my body—I mean really taken it out back and given it a licking—and now it was demanding a long break. So according to doctors’ orders, I was to take it easy, stay off my feet, and not exercise anything except patience.

  Not so easy for me. I was exhausted, yet restless inside. The weeks that followed my return had been something of a rude awakening, as I gradually realized that my life was not what I wanted it to be. Anyone who’s achieved a lofty goal knows the emotional low that sometimes follows in its wake. When the euphoria recedes and you return to your life, you’re often left confronting the same problems you had before the journey began. The aftermath of my climb had done little to improve things with my family, and my relationship with them continued to be distant at best. Although I had always envisioned settling down by my thirties, my future wife and I corralling a litter of kids, my love life was going nowhere fast. I was also beginning to feel ready for something else with work. The Samuelis and the Ducks organization they had built were still great, but the hours were long and there was not much room for advancement, since it was clear nobody above me was leaving any time soon.

  As I cast about for direction, the only activity that stirred much passion in me was my volunteer work, but even that proved difficult at times. In December 2008, thanks in part to fund-raising efforts for Kilimanjaro, the UCP-OC opened the Life Without Limits Therapy Center, a one-stop shop providing children with disabilities the specialists they needed in physical, occupational, and speech therapy. The new center offered individual and group therapy rooms and featured a special gym with everything from a simple rock-climbing wall to balance beams, a slide, and a pool of bouncy balls.

  As a board member, and since Kilimanjaro a lead spokesperson and fund-raiser for the organization, I spent a lot of time at the center and promoting its benefits. This brought me into touch with more children with cerebral palsy and other disabilities than ever before. Truth be told, these meetings were often uncomfortable for me. It was often difficult to know what to say to the children, some of whom could not speak, and if I was making any connection at all. Then there were the parents, who would often give me what I began to call “the look.” Upon introduction, they would stare at me, observe how I walked and moved, and try to connect their child’s condition with my own.

  Initially, I thought these interactions made me uneasy because I knew their child would likely never reach the level of ability I had. But over time I came to see that my discomfort had more to do with my reluctance to accept my CP and that the two of us were more alike than different. In reality, the distinctions I was making about my level of ability existed only in my head.

  Kilimanjaro had jarred loose a lot of things, and in those first months afterward I was still trying to fit the pieces together. The way that my condition had been ignored by my family when I was growing up. The way that I, in turn, had ignored my condition as an adult. Prior to the climb, I had assumed that this pattern had been disrupted once I’d started talking about my CP publicly and sharing my story with others. I had assumed that standing i
n front of a group and raising money for therapies and CP research meant that my days of pretending to be “normal” were over.

  The more I thought about the climb, though, the more I began to see how wrong my assumptions had been. The fact that I had made no special preparations (training or otherwise) for the climb because of my cerebral palsy. The fact that I’d treated myself as though I was just another person trying to conquer a mountain without acknowledging what having CP actually meant. The fact that I’d had to rely on the negative aspects of my history with CP—the taunting, the name-calling—to power myself up the mountain. While I continued to struggle with putting it all together, each piece spoke volumes about how far away I still was from accepting my condition rather than just stating its presence in my life.

  What spoke the loudest at that point, however, was the impact the center was making for those who came through its doors. Early in 2009, I witnessed one such moment.

  “Hi, Paige. I’m so happy to see you,” the therapist said, lifting Paige Dunning out of her wheelchair in the gym. She carried her over to a pommel horse, suspended by ropes from a roof beam. Twelve years old, with brown hair and a severe case of cerebral palsy, Paige was the daughter of one of the board members who had run the marathon with me back in 2006.

  “Okay, Paige,” the therapist said, positioning herself behind her on the pommel horse so she would not fall. “I know you love to swing. Are you ready to swing?”

  Paige offered nothing, her head listless, arms curled, as they swayed back and forth together on the horse. The therapist behind Paige stopped the pommel horse.

  “Okay,” she said. “Pick your head up this time, and we’ll swing. You can do it.”

  Paige didn’t move, head still down. As I watched, I didn’t think there was any way she could or would show any reaction.

  “I’ll rock a little,” the therapist said, moving the horse slightly. “But if you want to really swing, you have to lift your head.”

  A second passed. Nothing.

  Then Paige raised her head ever so slightly. The therapist rewarded her by giving the horse a big wide swing. Paige lifted her head more and brightened with a smile.

  That short little movement by Paige may not have looked like much, but for her, trapped in a body that fought not to do what she wanted, it was a huge leap forward. Time and again, I was amazed by these kids.

  Through Dr. Aminian I also met a seven-year-old named Ashley Arambula. Like Paige’s, her cerebral palsy left her unable to control either her arms or her legs. She also had intractable epilepsy, which left her to suffer severe unpredictable seizures that could not be controlled by medication. And yet, whenever I saw her, she had this amazing smile and can-do attitude. There was no retreat or self-pity in Ashley, and she attacked her therapy with a gusto that put me on the floor and gave context to any troubles of my own.

  These children were the bright lights in my life. The more time I spent with them, the more inspired they left me, the more I wanted to do for them. Big ideas, big possibilities began to stir within, and soon I was envisioning launching my own foundation and sprouting centers like Life Without Limits across the world. It was an easy next step to know where I would start my work first: Tanzania. There were so many children like those at the Usa River School who needed help.

  By the spring of 2009, I was charging ahead with the formation of the OM Foundation. Its motto was “One Man, One Mission . . . Living Beyond the Limits.” The mission was to help support children with disabilities, anywhere and everywhere. This would take the form of building centers, funding medical treatments, raising awareness, and promoting acceptance. My days soon became a whirlwind. They were filled with meetings to set up the foundation, my regular work with the Anaheim Ducks, and managing the attention I had received after the Kilimanjaro climb. Between finishing shoots for the documentary and doing interviews for radio, TV, and newspapers, I was, frankly, getting a little tired of hearing myself speak. But I saw what an opportunity all of this interest offered for the foundation, so yap, yap, yap.

  The attention only intensified as the documentary premiere approached. We were blown away when Michael Clarke Duncan offered to narrate the documentary for free. An Oscar-nominated actor wanted to be part of what we were doing. The snowball of publicity was amazing, and it grew bigger by the day. I was onto something. I just didn’t know where it was leading me next until in late April I sat down to watch the whole documentary for the first time. It so happened to be at its premiere.

  Sitting in the dark of the theater in Orange County, with four hundred of my close and not so close friends, I watched myself climb Kilimanjaro. To my right sat Bompa. To my left, my father. During the thirty-nine-minute documentary, the audience moved through emotion after emotion—reflection, laughter, horror, anticipation, triumph—as I made my way to the summit. When the credits rolled, people cheered and applauded. Bompa tapped me several times on the leg as he stared up at the empty white screen, tears in his eyes that never broke. He was proud of me. My dad was proud of me.

  Afterward, I smiled and shook hands and laughed and drank and bathed in the limelight. Inside, I was shaken and roiled and, more than anything, spurred to do something about it, something big.

  What I had witnessed on the screen was very different from what the others took away. A marathoner friend of mine once told me that endurance events, whether climbing a mountain or running a race, were like looking at oneself in a fun-house mirror: sometimes you liked the exaggerated version of yourself you saw; other times you were horrified. With the documentary, I got a good, long, ugly look in the mirror. All my physical weaknesses were on view: my awkward gait, the stiffness, the clumsiness, the wibble-wobble of it all. Vivid was how vulnerable and undertrained I came to the mountain. So was how far from “normal” I was, though that had been my ill-considered approach to the adventure.

  Also on view was my attitude: the glum looks, the despair, the self-pity, the tunnel vision, and the negativity that was only thinly masked. Instantly, I was brought back to the mountain, the dark night before the summit, and it pained me to see myself struggle, knowing that the only thing that had gotten me through it was the shame of my cerebral palsy and family regrets. As I watched it all unfold on screen, my mental failings seemed more pronounced than my physical ones.

  Before the lights had even come up, I knew I needed a new adventure, a new test, to try myself against. Jake’s death had stirred me to attempt Kilimanjaro, yet now I saw plainly how the climb itself had revealed a mountain of trouble inside me. It wasn’t pretty, but at least I had been pushed to see it. The next time I looked into the fun-house mirror, I wanted to like—hell, love—what was reflected back at me.

  Watching the documentary again and again through the spring and summer at festivals across the country drove this conviction further home. My body was still a wreck, but once recovered, I was going to do something, something big.

  The death of my grandparents solidified this idea, set it in stone. In early September, Bomma passed away first. Afterward, Bompa refused treatment for an infection he had been struggling with, the result of recent knee surgery. As the days passed, he grew weaker and weaker. We tried to get him to go to the hospital, but there was no convincing him. Instead, we hired a nurse to stay with him twenty-four hours a day.

  The day before he passed away, my mother, brothers, and I gathered in Bompa’s bedroom. He asked us to hold hands and promise to stick together, to be a family. He then let out a howling cry that shook us all to our foundations. None of us had ever seen Bompa show any weakness, let alone cry, and now he just let rip, chest heaving, tears pouring down his face. It is my last memory of him, and though I will never know for sure what provoked the outburst, I suspected he was giving voice to his regrets, to what he didn’t do in life or would have done better.

  In January 2010, my brothers and I descended the long flight of steps to the beach, as we had done so many times as children. Our mother followed us down. Despi
te Bompa’s wish, the four of us had never been farther apart. Matt was living in northern California, and we only saw each other a few times a year. Although Mike and I only lived a few miles from each other, we barely spoke. Arguments with our mother about how Bompa should have been taken care of and what should now be done with his estate divided us all the more.

  We shared a few words that morning, and they were mostly about how cold it was. It was colder still when, after a prayer, said by our mother, Mike and I stripped down to our bathing suits and walked into the ocean. We each had a zip-top bag containing some of our grandparents’ ashes. It was their dying wish that they be spread on these waters.

  Mike and I swam out past the break line and bobbed in the wintry swells, our teeth chattering. The cold didn’t seem to bother the pod of dolphins coursing through the waters 50 yards away. While Mike and I wrestled to open the bags with our numb fingers, we joked that Bompa sure was a tough bastard for swimming in these waters every day until he was eighty. Together we said a final commemoration: “This is where you belong. This is where you always loved to be. We love you both!” We dunked the bags under water until the ashes dissolved into the ocean and then swam in a hurry back to shore.

  If I had any chance at living a life without regrets, whether in how I approached my cerebral palsy or embraced the people who should be closest to me, I needed to take another look in the mirror, confront my weaknesses, move past my anger, and accept myself. Given my troubles and how deeply they were woven into the fabric of who I was, this mirror would have to be a real monster to give me the time and the ability I needed to unravel them.

 

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