When I was nine years old, my mother took me to see yet another doctor, this time a neurologist. He was not covered by my family’s insurance, but he was apparently the smartest guy in the room (the room being Arcadia, California), so they paid cash. My brother Mike, who was sixteen at the time, came with me. The neurologist watched me walk, clipped something to the bottom of my foot, and had me track his finger with my eyes. No MRI, no scans, no nothing. While I was sitting on my brother’s lap beside our mother, he gave the diagnosis: syringomyelia, a spinal-cord disorder. The prognosis, which he delivered right then and there, was that I would be in a wheelchair by the age of fourteen and most likely dead by twenty.
Now, none of this fazed me. I simply blocked it out, put it away in a dark corner of my mind. The neurologist recommended a physical therapist and prescribed some pills. The pills made me loopy, so I stopped taking them, and the therapy was so dull and tiresome that I loathed every session. My parents, my brothers, my grandparents, and I never spoke about the doctors, the prognosis, or the therapy. None of it.
Two years later, my brother’s near-death experience overturned my own death sentence. Mike was working out at the University of California–Irvine (UCI) gym. Always a big-shot athlete in high school, co-captain of the water polo and swim teams, Mike was involved in both again during his freshman year in college, and he added another sport as well: crew. He was cranking away at the indoor rowing machine, trying to “pull a better erg” (number of strokes and power over time), so that he would be selected to compete that weekend. Suddenly, he got dizzy and lost consciousness. His coach and teammates rushed him to the UCI hospital ER, where he remained over the weekend, with a skull that felt split into a hundred pieces.
By Monday morning, tests had revealed that Mike had suffered a brain hemorrhage from his overzealous workout. By chance, the blood vessel that popped was basically a loop going nowhere; otherwise, he would have died. It was nothing that some bed rest wouldn’t heal, but the hospital recommended that Mike also see a neurologist. This doctor asked Mike if there was anything out of the ordinary with his family medical history. Mike, who, like the rest of us, had pushed my syringomyelia diagnosis out of his mind, simply told the doctor that one of his brothers walked kind of weird. The neurologist asked to see me.
My mother was all for it, but I, now eleven years old, wanted nothing more to do with doctors. Mike offered a deal: if I went, I could spend the night with him at college and go to his classes. Bribes worked wonders on me.
It turned out that Mike’s neurologist was not just any neurologist. His name was Dr. Arnold Starr, the department head at UCI and a cutting-edge researcher. He was in his late fifties, with a goatee and a “mad professor” shock of hair. He peered around the mountain of patients’ files on his desk and took my medical history. My mother mentioned the syringomyelia. Dr. Starr asked if I had ever had an MRI. The answer was no.
Then he leaned over his desk, elbows firmly placed on a low stack of manila folders, and said to my mother, “You can’t diagnose syringomyelia without an MRI. There is no other diagnostic for the condition. If Bonner didn’t have that test, then the diagnosis can’t hold.”
Dr. Starr then gave me a thorough physical exam and sent me for a battery of tests: MRI, CT, EEG, blood tests, the works. I didn’t much want to be rolled into the MRI machine, which looked like a tomb, but Mom dangled the bribe in front of me. Still as a stone, I let the machine make its rat-a-tat-tat ruckus as it peered inside my brain. Then came even more tests, poking, prodding, stabbing, and examining my every movement, hour after hour.
While we were waiting for the test results, my big night on the UCI campus came. Mike lived in an apartment a half block from the beach in an area named, for its wild parties, the “War Zone.” I stayed up late, ate pizza, listened to loud music, and fed roaches to Mike’s oscar fish. Gobble. Gobble. All the girls pinched my cheeks, and I felt like a big shot. The next day, I went to his classes with him. Economics was a drag, but next came Humanities. I was sitting in the back row, eyes wide open, when the professor started talking about human sexuality. With details, lots of wondrous details. Mike clamped his hands over my ears and ushered me out the door.
We went back to see Dr. Starr a month later. As he spoke to my mother, his words rolled over me. I was thinking mostly about his black convertible Porsche with the red leather interior that he had promised to take me driving in, once all the tests were done.
“Well, I’ll tell you the good news,” Dr. Starr said. “There’s no way Bonner has syringomyelia.”
“No wheelchair at fourteen?” My mother replied. “No—”
“Absolutely not. No demise at twenty years of age either.”
“So, what is it?”
“Bonner has cerebral palsy.”
“Is that like MS?” my mother asked.
“No, muscular sclerosis is progressive and degenerative. Cerebral palsy is chronic, but nonprogressive.” This was doctor speak for, “You got it, and it ain’t going away, but it doesn’t get better or worse over time.”
My cerebral palsy, Dr. Starr went on to say, was the result of the damage inflicted during those precious first seconds of life when I was starved of oxygen. It was a disorder of the brain, causing garbled messages to be sent out to the body, primarily impacting motor function.
No two manifestations of CP were alike. Some of the most severe cases left people unable to control their movements, their arms and their legs often crooked and locked. I fell into the broad CP category of spastic diplegia, in which the lower body is primarily affected. Because Mission Control in my brain was out of whack, the muscles in my legs didn’t function as they should. To walk or run normally, some muscles must contract while others elongate; it’s a delicate balance. My spastic diplegia threw off that balance, leaving me with poor motor-function control, debilitating tightness in my hips and legs, weak muscle tone, a tendency toward joint breakdown, rapid exhaustion, slow recovery, tendinitis, plantar fasciitis, and plenty of other “-itis” fun. To add to the mix, I had trouble maintaining my balance and equilibrium. Dr. Starr prescribed continuing with my physical therapy and keeping on with the sports. Whatever I was doing was working marvels.
Given my previous diagnosis, all of this came as fantastic news to my mother. Her eyes welled up with tears of relief. For my part, I wanted to go home, kick the ball around, ride my bike, maybe head out for a swim with my grandfather. None of these words, spastic this, palsy that, applied to me. They might as well have been referring to some other kid.
At dinner that night, not one word was mentioned about the doctor visit. Later that year, when I won a soccer all-stars award for “overcoming adversity,” I didn’t know what people were talking about. I was normal, just like everybody else. That’s what I told myself.
At the end of my talk to the board at UCP-OC, I offered to do anything I could to help their work, shook hands with everyone, passed out my business cards (a salesman always), and left. As I walked to my car, my hands settling from the shakes, I felt a tremendous weight fall from my shoulders. This was the first time I had been honest about my disability to strangers, to a group of them no less, and they had accepted me—they were even considering me as a candidate for the board.
The next day, at my desk at work, I received an e-mail from one of the board members, Steve Robert. He had been sitting directly to my left, but I had been so nervous throughout that meeting that I couldn’t even put a face to the name. His e-mail read:
Hi, Bonner.
Nice to meet you yesterday. I have a four-year-old son named Jake, who has severe cerebral palsy. I went home last night and shared your story with my wife, Alison, and I wanted to let you know how much hope it gives to us and our little Jakey, seeing what you do, having accomplished what you have with college and your career. You give us hope that if we keep working hard and pushing to help our Jakey, he can get to a better place than he is at.
Sitting in my office, reading, then rereading t
he note, I cried, and yet I had absolutely no idea why.
2
A Boy Named Jake
On a crisp Sunday morning, January 8, 2006, I stood at the starting line of the Orange County Marathon in my white microfiber shirt and brand-new Asics running shoes. The sun had just risen over the hills of Newport Beach, and the Pacific Ocean stretched out to the west into the endless distance. Thousands of runners of every stripe—young, old, fit, unfit, eager, and scared senseless (I was in the last category)—milled about, waiting for the race to begin. Even though I was set to only run the half marathon, 13.1 miles still seemed like an immense distance.
Ever since my speech to the UCP-OC board six months before, my idea of normal (and happy) was quickly changing. The same day I received the note from Steve Robert, I was invited to become a member of the UCP-OC board. Spurred on by the feeling of acceptance they gave me for something I had long kept hidden, I dove into the foundation’s activities, raising awareness in the community about cerebral palsy and helping families get early-intervention care for their children.
It definitely required more time than I had first thought when I rose to Henry Samueli’s challenge. And, with the end of the NHL lockout in July 2005, work was intense. Putting in ten to twelve hours a day, six, often seven, days a week, helping develop the sponsorship division from the ground up, entertaining clients at the games and concerts at the arena, I was burning it at both ends.
At the time, adding a half marathon to the mix had seemed like a great idea. The foundation was one of the charities involved at the event, and every other board member had committed to run at least a 5K. Gung-ho, I went for the half marathon. More miles, more money, no big deal. I trained exactly twice: one run of 3 miles and another of 5. What other training could I possibly need? With e-mails to friends and family, I raised a little over $3,000 on the promise that I would finish.
So there I was at the Orange County Marathon, slathered in BodyGlide to prevent chafing and believing that chafing would be my biggest problem. To my left was Steve Robert, wearing a visor with “Jake” written across the bill. At six foot three, a former jock whose banner days were long past, he was all nervous jokes. To my right was Grant Dunning, another board member and the fittest of our bunch. His young daughter, Paige, who had CP, was strapped into a jogging stroller ahead of him. Steve and Grant were in for the full marathon.
At the gun, Grant pressed ahead, and we lost him pretty quickly. I was thankful for the crush of runners, as it kept the pace slow. Soon, though—too soon for my taste—the pack loosened, and we headed away from the coast along San Miguel Drive.
“How fast are you?” Steve asked about a mile and a half into the race, both of us going at a jog.
“I’m really slow,” I said.
“I’ll go at your speed then,” Steve said with a grin.
We took the next couple of miles at a good pace. The day was gorgeous, the fans along the course were cheering, and the adrenaline was working its magic. Steve asked how I liked being on the board, and we spoke about the foundation’s work. Even after his email, the two of us had never really spoken at length, and I had not met his family prior to that morning. But as the miles added up and our pace slowed, Steve opened up about his life and his son Jake, and I started asking a lot of questions.
Born in southern California, Steve married his junior-high sweetheart, Alison. Steve was the general manager at Targus, the laptop-case manufacturer, and Alison was the stay-at-home mother of their two sons, Tyler and Zach, both athletic kids. In the thirty-seventh week of her third pregnancy, Alison and the boys were spending the night at her mother’s while Steve was on a business trip. After everybody went to bed, she began experiencing intense abdominal pain. She crawled to her mother’s room, and the paramedics arrived soon after. In the hospital, the pain subsided, and everything seemed okay. But when Alison started labor a few hours later, the pain returned, and it was beyond measure. Thirty minutes later, Jake was born. From the expression on the doctor’s face, Alison knew that everything was definitely not okay. Jake wasn’t breathing, and she was bleeding heavily. While one doctor tended to Alison, another worked to resuscitate Jake. Finally they were both stabilized, and an ambulance whisked Jake to a hospital with better critical infant care.
Meanwhile, in Virginia, Steve was frantically trying to find out what was going on. He called the hospital only to be told that they were very busy down there. In the morning, he was on the first flight to Los Angeles. When he arrived, there was a message from his father on his cell phone. It said, “I’ll be at the airport to pick you up.” In his heart of hearts, Steve was sure his son was dead.
But Jake was a fighter, and he survived his first day, then the next, and the next. Because of complications while still in the womb and some difficulties during delivery, he suffered damage to every organ in his body but his heart. At two weeks old while still in the NICU, Jake had a seizure. A subsequent MRI led doctors to discover the extent of the damage to his brain. They told the Roberts that it was likely their son had cerebral palsy.
“What does that mean?” Steve and Alison asked.
The answer was that the doctors wouldn’t know Jake’s full prognosis, whether he had CP or where he was on its wide spectrum, until he was at least two years old.
Three weeks after his birth, Steve and Alison took Jake home. He had no further seizures, but no matter how often they told themselves that he would be okay, that he would do all the things that Tyler and Zach had done, the facts were undeniable. He couldn’t hold his head up on his own. He had trouble locking eyes. He didn’t roll over on his own or sit up. At two years of age, it was clear that Jake had a severe case of CP and would likely be in a wheelchair his whole life.
Alison threw herself into caring for her son. It was a round-the-clock job, and she lived with her breath constantly half caught in her chest with worry. They found a new house, in Yorba Linda, which they stretched to buy, but they wanted something single-story and large enough to accommodate wheelchair access. Finding the right care was a struggle, and Alison had to become a medical expert and a tireless fighter to get Jake the therapy and expertise he needed. If he held up his head a second longer than the day before, looking at her with his big blue eyes, it was a Herculean victory. When he turned his head and smiled when he heard her voice as she came in the room, she beamed with pride. When she was out shopping or at a restaurant, she loved the rare person who came up to her and asked about Jake. She loved talking about him.
Steve, though, had trouble making a connection with his youngest son. He couldn’t talk with him, and he couldn’t imagine what it was like to be trapped inside a body so stiff and rigid. Moreover, he couldn’t get past thinking about everything Jake would never do. He would never kick a ball or race across the lawn with his brothers. He would never learn to hit a baseball or drive a car. As much as Steve wanted to find the connection, he was blocked by these thoughts.
Nearing Mile 6 of the marathon, we were moving slowly, almost walking, and we had plenty of time to talk.
“You didn’t change my boy,” Steve said, explaining why my speech in front of the board had been so inspirational to him. “He’ll still struggle to eat. He may never say a word. But your story, what you’ve achieved . . . it’s changed my whole idea of what CP is and what Jake could be. You lifted away the limitations and got me excited about his hitting his next milestones, whatever they are.”
By Mile 8, we were both in trouble. Steve was having a hard time. My legs felt numb underneath me, my hips were searing, and I could barely stomach the idea of running another 5 miles.
“I’m in so much pain,” I admitted.
“Good thing we’re running together then,” Steve said with a grimace.
As we continued, he asked me what it was like to live with CP, what the stiffness and pain felt like. He knew that Jake must feel the same in his body, but he had never been able to give voice to it.
We approached the turnoff where I was
to head down one way to finish the half marathon and Steve would go down the other one for the full race. Steve asked if I would continue with him on the marathon course.
“It’ll be fun,” he said, challenging me to go at least to Mile 16, where the foundation’s supporters were staffing the water station.
I hadn’t known what to say to Steve when he told me his story or, for that matter, how to connect my experience of cerebral palsy with his son’s. But Steve’s openness and honesty about his own life had made me feel so comfortable that I wanted to do everything I could to help him finish his race. What’s an extra 3 miles on top of the half? I thought. Like a naive fool.
We kept on. Steve told me that he was sure Jake knew he was running for him. He told me how he had learned to interpret the “noises” his son made to know when he was happy or sad, confused or safe and secure.
“I’m doing this for Jakey,” Steve said as he struggled on.
At some point in the fog of exhaustion, we separated from each other. Steve slowed to a walk, I think, but I knew that if I did the same I would collapse. By the time I stumbled into the water station at Mile 16, I was a complete disaster. I sat down on the curb, showered myself with water cups, and tried to understand what I had been thinking. Finally, some friends lifted me up and drove me to the finish line, so I was there to cheer Steve on to the very end. Unfolding myself out of the car, I felt like the Tin Man from The Wizard of Oz, every joint rusted over and an anguish to move.
Nearly six hours after the marathon’s start, as many of the race organizers were already disassembling the pedestrian barriers, Steve hobbled toward the finish. A hundred yards out, Alison lifted Jake, who was wearing the green “Team UCP” T-shirt, out of his push buggy and handed him to her husband. Holding his boy tight to his left shoulder, Steve jogged the last stretch of the race. Jake was bouncing up and down, smiling, laughing, and loving the movement. Everybody clapped, cheered, and wept as father and son crossed the finish line together. Alison and her two older boys were the first ones to greet them, and they held each other for a long time.
One More Step: My Story of Living with Cerebral Palsy, Climbing Kilimanjaro, and Surviving the Hardest Race on Earth Page 2
