Three Weeks With My Brother
Page 26
“But . . . I don’t know if I can.”
“You can, Nick. And you will. I know you loved dad, and he knows you loved him. He loved you, too. But you’ve got your own family to consider, too. Mom and dad would want you to go.”
After hanging up the phone, I thought about what he had said. He was, I thought, both right and wrong. I understood his point, but at the same time, it felt . . . callous. It was like trying to choose between my dreams for the future and respect for my father. If I stayed home, would I ever get another chance? And did that matter?
But if I decided to go, what then? If someone asked if I was enjoying the tour, or excited about what was happening to me, what on earth was I supposed to say?
There was no easy answer to that question.
I talked it over with Cat, with Dana, with Micah again, and with my relatives. I talked to my agent, publicist, and editor—all of whom said that I could cancel the tour if I felt I needed to. In the end, I reluctantly decided to go. The guilt I felt inside, however, was enormous. I couldn’t shake the feeling that it was disrespectful to my dad’s memory.
Andrew Cohen, the producer, called soon after. In shock, he offered sincere condolences, and I asked him not to air the footage that concerned my dad’s death. We both knew the show would garner higher ratings were it to air—the current state of television bears that out—but Andrew didn’t hesitate, saying he’d bury the footage. Despite my anguish over the loss of my dad, I was reminded once again of the goodness of people.
I flew to California with my stomach in knots, and somehow made it to the dinner. I remember nothing about the evening except for a feeling of disembodiment, as if I were watching what was happening through someone else’s eyes. People asked about the new book and I answered on autopilot, saying all the things I was supposed to say. But as I spoke, all I could think about was my dad, how wrong this felt, and how much I longed to see my siblings.
After the dinner, I spent the following week in Sacramento with my brother and sister. Micah and I stayed at the house, which suddenly seemed to be nothing but a shell. At the same time, nothing seemed to have changed at all. There was a coffee cup on the kitchen counter, and fresh milk in the refrigerator. Mail continued to arrive; there was a stack on the table that Micah had already brought in. The grass had just been mowed. It was easy to imagine that my dad would be driving up any minute, or even that my mom was cooking in the kitchen. The memories of both of them were vivid, and as Micah and I moved from room to room, we could think of nothing to say.
I was exhausted. My mom. My sister. My dad. My son. Too many worries in too short a time. Micah had the same worn expression I did.
We made arrangements for the funeral. Relatives began flying in. Everyone was in shock, and my uncle Monty couldn’t stop crying. Nor could we.
My dad was buried next to my mom, and the same people who’d gathered together seven years earlier came to the funeral. My uncle Jack spoke at my dad’s grave and offered the sweetest eulogy I’d ever heard. The estrangement had wounded most of our relatives, but they loved him nonetheless. At the graveside, Cat and I held hands, as did Bob and Dana, and Micah and Christine.
This is what I thought when I was at the funeral:
My dad was a good man. A kind man. But my mom’s death had wounded him, and my sister’s illness had wounded him again. He spent the last seven years of his life struggling with sadness, in a world he no longer recognized. Yes, he’d been angry at times, even bitter. But he was my dad and he’d helped raise us. And I not only respected him for that, but loved him for what he did. He’d fostered independence, showed us the value of education, and taught us to be curious about the world. Even more important, he’d helped the three of us become close as siblings, which I consider to be the greatest gift of all. I could have asked for nothing more in a father. And really, who could?
Later, Micah, Dana, and I stood alone in front of the casket, our arms around one another, saying good-bye one last time. We missed him already. With the sun coming down hard, we were together and alone at exactly the same time, as orphaned siblings always are.
After the funeral, Cat and I stayed on in California for a couple of days. Miles was old enough to understand what had happened; Ryan still seemed to understand nothing at all.
Over the year, Cat and I had begun to close ranks when it came to Ryan’s condition. Only she and I, we believed, fully understood how challenging the year had been, and in those early years of struggle, we divided people into two groups: good and bad. Those who were kind to Ryan, and those who ignored him.
We were under no illusions that he was like other children. He didn’t laugh much, he didn’t look at people when they spoke, nor did he understand what they said to him. Yet, we wanted nothing more than for Ryan to be accepted for who he was.
He was a sweet kid. A kind child. And with patience and effort, Ryan could be fun to play with. But no one, besides Cat or myself, ever made the effort. Unlike Miles, Ryan had no friends; unlike Miles, none of our neighbors’ kids ever wanted to play with him. Unlike Miles, Ryan was never invited to birthday parties. Unlike Miles, no one ever tried to talk to him. And adults, sadly, were no different. More often than not, they simply ignored him, or worse, took his lack of interaction personally. “He doesn’t like me,” neighbors said to us. Even relatives seemed to ignore him during the course of the week—adding more stress to an already stressful week—and Cat and I would have to bite our tongues to keep from screaming, “You’ve got to try!”
What we really meant was, Please, someone try. Anyone. We love him so much, and you have no idea how frightened we are for him.
We kept this to ourselves while we divided the world into groups. We’d been handling Ryan’s problems on our own, and we’d continue to do so. We didn’t want people to pity Ryan, or pity us; we wanted them to love Ryan as much as we did. Even if something was wrong with him.
Two days after the funeral, Cat and I went out to pick up groceries. Micah had offered to stay with Miles and Ryan, and when we left, Micah was slogging through paperwork in my dad’s office. When we got back to the house, however, Micah was no longer at the desk.
Instead, Micah was wrestling gently with Ryan in the living room, and more than that, Ryan was laughing.
Laughing.
The sound was incredible; had it come from heaven itself, it could have been no less joyous, and all Cat and I could do was stare.
“Oh hey guys,” Micah said, as if nothing extraordinary was happening, “we’re just having some fun.”
Micah didn’t have to be told how Cat and I were feeling. Micah already knew.
My book tour lasted nearly three months. Cat was on her own with the kids, continuing to haul Ryan from one doctor to the next, and the incredibly stressful year had taken its toll on our marriage.
It wasn’t any single occurrence that caused the tension between Cat and myself; in large part, it had to do with the fact that our marriage had been careening from one crisis to the next almost since we walked down the aisle. Our marriage had been less a permanent state of bliss than an attempt to endure a twisted version of survival camp, and the emotions had to flow somewhere. For me, they flowed toward Cat, and for her, they flowed toward me. Our marriage was already under tremendous duress, and Ryan’s problems became the breaking point.
While I worried tremendously about him, my worries were nothing compared to my wife’s. I think it has something to do with motherhood. It’s an almost instinctive response; she had carried Ryan in her womb, she had nursed him as a baby, and while I worked outside the home, she had been the one caring for him every minute of every day.
As the Christmas season approached, we seemed unable to enjoy each other’s company as we once used to. We were also arguing more. I knew my wife not only deserved a break, but needed a break—she’d been on full-time duty for three months while I was on tour—and for Christmas, my gift to her was a trip to Hawaii. While she spent a week with a friend, I woul
d stay home with the kids.
While it may strike some people as odd—if we were having trouble, why didn’t I offer to go with her?—the answer is simple. Someone had to stay home to take care of Ryan. There was no family nearby to help, no neighbors willing to assist, no one, in fact, that we would trust to stay with him for a week. If my wife was to use the trip to relax, I had to stay at home. And I did.
Yet while she was gone, we got into an argument on the phone. Heated words were traded back and forth—neither of us had been treating the other well—and accusations were shouted. Finally, Cat shouted me down.
“Look,” she finally ground out, “I know your year has been hard. But do you want to know what my year has been like?” She paused to draw a ragged breath. “I wake up every morning and I think about Ryan. And I look at my beautiful child, a child that I love more than life itself, and I wonder to myself whether he’ll ever have a friend. I wonder if he’ll ever talk, or go to school, or play like other kids. I wonder if he’ll ever have a date, or drive a car, or go to the prom. I wonder if he’ll ever get married. And I spend all day driving from doctor to doctor, and no one can tell us what’s wrong, and no one can tell us what to do. He’ll be four years old in a little while, and I don’t even know if he loves me. I think about this when I wake up, I think about this all day long, and it’s the last thing I think about before I go to sleep. I wake up crying in the middle of the night because of it.” Her voice was beginning to crack. “That’s what my year has been like.”
When my wife finished, I didn’t know what to say. Yes, I was worried about our son. But—and it pains me to admit this—my worries weren’t like hers. I’d split my worries—between Ryan and my dad, Dana and my book—while my wife had zeroed in on our son. He’d become her entire world.
It was the first time I realized the depths of despair that my wife was enduring, and I felt sickened by the argument I’d started.
“I’m sorry,” I said quietly. “I didn’t know it was like that for you.”
My wife simply sniffed on the other end.
“Honey?” I whispered.
“Yeah?”
“I once made a vow to you to love you forever, and now it’s time that I make another. I promise—I swear on my heart and soul—that I’m going to cure our son.”
The next day, while Miles stayed at a neighbor’s for the day, I went to Wal-Mart and bought a small table and chair. I bought this specific set for the simple reason that the seat had a seat belt with which I could strap my son in. Then, drawing on all the literature I’d read in the previous year, I buckled Ryan into a chair, opened a picturebook, and pointed to a picture of an apple while I held a tiny piece of candy out as a reward. I said the word aloud: Apple. Then said it again. And again. And again.
Apple. Apple. Apple. Apple. Apple. I repeated the words, willing my son to talk. I don’t know that my desire for anything has ever been greater; I concentrated, I focused, my entire world was centered around my son and his ability to say this one single word.
Within minutes, Ryan grew bored. Then he started to fuss and fidget. After a few more minutes, he’d begun to cry, trying to get out of the chair. After that, he started to get mad. Ferociously mad. He screamed and balled his fists, he tried to pull out his hair. He tried to claw the skin from his arms. He growled and cried out as if possessed.
And I’d take his hands, hold them against the table so he couldn’t hurt himself, and say: Apple. Apple. Apple.
Over and over. He screamed and screamed and screamed. And I said it over and over. And he screamed and screamed.
After two hours, he could say A.
After four hours, he could say Ap.
And after six hours, my son—six hours of angry, frustrated, heartbreaking cries on Ryan’s part—said in a tiny whispered voice: Apo.
Apple.
For a long moment, all I could do was stare at him. It had been so long, so exhausting, that I didn’t believe he’d actually done it. I thought I’d heard him wrong, and I said the word again. Ryan repeated it, and when he did, I jumped up from my seat and began dancing around the room, whooping for joy. I moved toward Ryan and offered a hug; though he didn’t respond to my affection, he said the word again.
It was then that I began to cry.
Simply to hear the sound of his voice, his voice—no screams, no grunts, no shouts—was breathtaking. It was the sound of angels, as sweet as music. But more than that, I suddenly knew that Ryan could learn. And I then understood that this had been my greatest fear all along. Cat and I had spent over a year wondering what to do for Ryan and whether he would be okay, and by saying this one, simple word, I suddenly knew that there was a possibility that he could be.
This word gave me hope; until that moment, I hadn’t realized that I’d lost every bit of it.
I was under no illusions that working with Ryan would be easy or that he would improve right away. I knew the road would be long and frustrating, but he was my son.
My son who could learn.
I knew then that I’d walk every step of the way with him, no matter how long it took. Taking his little face in my hands, and though I knew he wouldn’t understand, I whispered: “You and I are going to work through this together, okay? And I’m not going to quit, so you can’t either. And you’re going to be just fine.”
The next day, I worked with Ryan for another six hours, and that night I called my wife in Hawaii. I apologized again for the argument we’d had, then put Miles on the phone so he could talk to his mom. When I got on the phone again, I said casually,
“By the way, Ryan has something to say to you.”
I put the receiver up to Ryan’s head, held out a little piece of candy, and mouthed the words I wanted him to say. The words we’d worked on all day long. And into the receiver, he said:
“I wuff you.”
I love you. These were the first words Cat ever heard him say.
That night, I made the decision to quit my job selling pharmaceuticals, but I fully understood that I would continue to work a second job. In addition to writing my novels, I spent the next three years working with Ryan for three hours a day, seven days a week. And in the end, I would teach him to talk, one slow, painstaking word at a time.
It wasn’t easy. Ryan didn’t suddenly get better. It was a horribly frustrating process. It wasn’t two steps forward, one back; it was like a half a step forward, then back almost to the beginning, then wander sideways for a while, then go further back than where you’d started in the first place, then finally tiny improvement. Months after we started, Ryan had begun to parrot words; he could say almost anything, but had no idea what words were or what they were used for. To him they were simply sounds to get a piece of candy. It would take months and months of effort to finally make him understand that the word apple meant something.
There were behavioral issues, too. Lack of eye contact. Poor motor skills. Food phobia. Potty training. Cat and I worked with him on all those areas as well. He was, for instance, terrified of the thought of going to the bathroom. To finally get Ryan potty-trained, I had to strip him down, have him drink glass after glass of juice, and literally sit in the bathroom with him, coaxing him to go in spite of his fears. For eight straight hours.
While the structured work with Ryan lasted three hours daily, I didn’t want his entire experience with me to be one of struggle and challenge. Thus, my time with him wasn’t limited to teaching and learning; I tried to spend at least an hour a day with him doing only the things he wanted to do. We would play on the jungle gym, take walks, coloring—whatever made him happy.
But at the same time I never forgot that I had another son. I remembered believing as a child that attention equaled love, and I didn’t want Miles to grow up feeling as deprived as I had. I spent hours with Miles as well, doing the things he liked to do. We rode bikes and played catch, I coached his soccer teams, and he and I would eventually study Tae Kwon Do together.
Truly, my children had beco
me my other vocation.
In May 1997, we moved back to New Bern, and began remodeling the home we live in today. It was a major construction project, one that took months, but by then, moving and remodeling—with all the associated stresses—seemed almost simple.
Cat and I continued to work with Ryan. In August, I finished my second novel, Message in a Bottle, and my sister called later that month to tell us that she and Bob were getting married. Soon after that, Micah and Christine got engaged as well, and would be married the following summer. Micah’s business continued to grow, and he’d even begun a second business, one that manufactured entertainment centers.
Though Dana had begun getting headaches again—she’d been prone to migraines long before she’d been diagnosed—her CAT scans continued to come back negative. Nearly five years had passed since she’d first had the surgery—at which point she would technically be in remission. My sister was married in a beautiful ceremony in Hawaii. For a moment, just a moment, all seemed right in my sister’s world. She had the life she’d always dreamed of; she was married, had children, and even had horses she kept at the ranch.
Then, while on her honeymoon, Dana suddenly suffered another seizure. And when she got back, the CAT scan showed something it hadn’t in years.
My sister’s brain tumor was growing again.
CHAPTER 16
Valletta, Malta
February 11–12
In the previous four days—since the morning before our trip to Agra—we’d spent a total of five hours visiting both the Taj Mahal and Lalibela. Our flight time, by way of comparison, was nearly ten hours, or twice as long.
It was this slowing of the pace—and the extent of our travels to that point—that left both Micah and me feeling lethargic by the time we landed. But Malta, with its European flavor and atmosphere, energized us almost immediately.
The island was gorgeous, with white rocky cliffs plunging to the blue Mediterranean. The sky was cloudless, crisp and winter bright—it was our first stop where the temperature was cool—and after donning our jackets we boarded the buses and made our way to the various sites.