In “Far From the Tree,” Andrew Solomon examines a broad spectrum of families coping with children in exceptional circumstances and how they’ve not only dealt with their respective obstacles, but gained insight, solace and stronger senses of identity in the process. Here’s an excerpt.
An excerpt from Chapter Three: Dwarfs
When Clinton Brown III was born, his father, Clinton Sr., remembered, “I could see right away his arms were straight out, his legs were straight out, and his body was small. I almost fainted.” A curtain blocked the view for Clinton’s mother, Cheryl, but it did not block her hearing; the baby didn’t cry, and none of the doctors or nurses said anything. When Cheryl cried out, “What’s wrong?” one of the doctors replied in a hushed voice, “We have a problem here.” Although Cheryl wanted to see and hold her baby, he was whisked away. Later, a doctor explained that her son was terribly deformed and likely to die, the result of diastrophic dysplasia. Such profoundly affected children are usually institutionalized, he said, and offered to handle Clinton’s placement without her involvement, since it was sometimes easier for parents to give up a child they’d never seen. Cheryl was indignant. “That’s my baby,” she said. “I want to see my baby.” The doctors were vague about prognosis; only a few thousand people in the world were known to have diastrophic dwarfism. “The information they had on it was two paragraphs,” Cheryl recalled. “Two paragraphs on what the rest of our lives were going to be.”
Clinton was in an incubator when Cheryl finally saw him, and she was allowed only to touch his toe, but when she did, his eyes opened and she saw that they were blue and beautiful. She also saw everything she would come to know as signposts of diastrophic dwarfism: the unjointed hitchhiker thumb that springs from the bottom of the palm, the flat nose, the cauliflower ears, and the cleft palate. He had scoliosis and clubfeet, and his legs were bunched up under him like airplane landing gear. His head was gigantic. “Some kids have a mild version of this, but he had every symptom possible,” Cheryl said. “I think of it as the deluxe package.” Clinton Sr. said, “We came home without him. I remember pulling into our street, looking at Cheryl, and it was just empty, you know?” Clinton Sr. went back to work as an engineer for a cable TV company, and Cheryl to her job at a call center. Clinton had his first surgery when he was two weeks old to repair an umbilical hernia. When the Browns brought him home a month later, he was so tiny that Clinton Sr. could hold him in one hand.
Once they had him at home, Cheryl tried to treat him as she would have treated any baby. “When I was young, I thought life went on a schedule. You go to high school; you find a job; you get married. When you have a child like Clinton, it’s ‘What happened to all that stuff I always counted on?’” When Clinton was eleven months old, Cheryl found Steven Kopits. “From that moment on,” Cheryl said, “he controlled everything that happened to Clinton. Without him, Clinton wouldn’t have walked.” Clinton Sr. said, “You went into his office depressed, and you came out enlightened and with new hope.” Cheryl said, “They weren’t patients to him; they were his children. Nobody else ever comes up to that level. And no one will, because there’ll never again be an angel like that on this earth.”
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Kopits was famous for developing long-term surgical programs for his patients; rather than perform a single operation in the unlikely hope of correcting all of a patient’s problems, he would perform one that promised to reap benefits down the road and facilitate subsequent operations. In the end, he performed twenty-nine surgeries on Clinton Brown Jr. “I had asked my pediatrician what Clinton was going to look like,” Cheryl said. “So he gave me a book on people in the circus. I went to Dr. Kopits. He said, ‘Let me tell you something. That’s gonna be a handsome young man.’” The long waits in Kopits’s waiting room were notorious; a routine visit often became an all-day affair. “No question in my mind I would wait ten hours,” Cheryl said. “He would say, ‘I’m sorry, I have to see this one.’ We knew if our child needed him that he would say the same to another family.”
When Clinton was almost three, after six months of constant surgery, Dr. Kopits assigned him to one of his staff physiotherapists, and Clinton began to walk. Kopits worked on Clinton’s clubfeet, his tibiae, his fibulae, his knees, his hips. Clinton had eleven back surgeries, cleft palate surgery, surgery to correct an inguinal hernia. He spent six months in a body cast, flat on his back, with a circle of metal with four pins fixed in his skull to immobilize his neck and spine. “I lived in the hospital with him for one month, two months, whatever it took for him to be rehabbed,” Cheryl said. The call center where Cheryl worked gave her extra time off. The Browns needed two parental insurance policies for Clinton’s surgical program; even then, the uncovered expenses were catastrophic. “You’ve heard of the Six Million Dollar Man?” Cheryl said to me, pointing at her son. “This is the Million Dollar Dwarf you’re talking to.”
Since diastrophic dwarfism is a recessive genetic trait, any other child Cheryl and Clinton Sr. might produce would have a one-in-four chance of inheriting it, so they decided not to have more children. “In the beginning, you live in six-month increments,” Clinton Sr. said. “With our kind of kid, you don’t look long range.” Cheryl said, “The hardest thing was going out in public, that first negative comment or stare. I always had it in the back of my head that it should be a learning experience for everybody that encountered Clinton and me. We made it a little joke: ‘Okay, look at that one, Mom. They’re staring at me!’ Then Clinton would just do a nice little wave and smile.” Clinton Sr. said, “We were in a store once, and this little kid was hovering. So Clinton, who was twelve, ran around the next aisle and, as the kid came by, jumped in front of him and spooked him. The kid freaked out and broke down crying. I said to Clinton, ‘That wasn’t the right thing to do.’ He says, ‘But it felt so good, Dad.’ And I said, ‘Yeah, okay. That one’s for you.’”
Clinton said, “When I was a kid, I was bitter towards the fact that I was little. Angry that I didn’t have the same opportunities as everybody else. You either face the war, or you falter. It was everyone else’s problem, that they didn’t know how to handle it, and it was my problem that I didn’t know how to teach them how.” Clinton Sr. added, “Once he said, ‘If I was average-size, I’d be great, wouldn’t I?’ He was eleven, in that hospital room. So now I had to leave the room ’cause I was crying, and I felt so helpless. When I came back, he said, ‘That’s okay, Dad. I have the answer.’”
“I was such a sports fan, and I wanted to be an athlete,” Clinton said. “We used to play hockey in the street, but everybody started getting huge, and running me over, so I couldn’t play. It’s just a big piece of childhood that I missed out on.” During the long periods of immobility and surgery, Clinton was homeschooled. It was his primary distraction, and he worked hard. “I figured I had nothing else to do, so I got ahead of my class on most things. I decided to do really well academically, ’cause I just had to be the best at something.” When he graduated, Clinton was accepted at Hofstra—the first member of his family to enroll in college. He decided to major in banking and finance, volunteered to be a peer counselor, and helped run orientation week for new students. “I wish all life was college. I’m in the big, macho fraternity; I’m friends with all the girls on campus. I’ve dated here and there. I have fun.”
With his unjointed fingers, Clinton still needed help buttoning a shirt, but he became increasingly independent in other regards, and he got a driver’s license and a specially fitted car. “I remember when he told us he was driving,” Clinton Sr. said. “A friend of mine tells me he saw Clinton on the Long Island Expressway! I go, ‘You saw Clinton in a van, driving on the LIE?!’ So I found his schedule, and I snuck down to school. I didn’t want him to know that I was there, so I parked in the back. I’m thinking the teacher’s drunk or he’s a saint. Because they had a makeshift seat and steering wheel for Clinton. He drove right out. I didn’t say a word because—well, I couldn’t talk. I was amazed.”
“When he first went to Hofstra, he met this group of guys that he’s been hanging out with for the last four years,” Cheryl said. “They would go out to bars and stuff. I said, ‘Well, how do you get on that bar stool?’ He goes, ‘They lift me up, Ma.’ I said to him, ‘Your body is three feet tall; your friends are six feet tall. If you drink two beers, that’s them drinking four beers.’ I was terrified about his drinking and driving. I went past a bar and I saw his car parked there—it’s very easy to recognize with all those fittings. I didn’t think I could march in there like I wanted, but I left him three messages and sat home by the phone waiting for him to call. So I told this to the mother of a child who had gone to school with Clinton. She said to me, ‘You’re so lucky that he is at a bar.’ I thought, ‘Okay, if you’d told me when he was born that my worry would be that he’d go out driving after drinking with his college buddies, I’d have been overjoyed.’”
Clinton has learned to set boundaries with a public that takes his size as a waiver of all social rules. “I used to become really upset,” he said. “I would cry. Now I just go right up to the person. My mom’s always, ‘Be nice, be nice.’ But sometimes you can’t be nice. I walked by this guy’s table, and he goes to his friend, ‘Oh, my God, lookit that midget.’ I said, ‘Don’t ever do that,’ and I knocked his beer into his lap. You can’t yell at kids. They don’t know any better. So I go up to the parent: ‘Listen. Why don’t you teach your kid some manners and have some class about you?’ And it’s no better in classy places.” I remembered this conversation when Clinton and I had lunch a year later in a nice restaurant in midtown Manhattan, a place he had chosen near his office. As we walked to our table, every person we passed stopped talking and stared, except a few who looked out of the corners of their eyes. If I had shown up with a ring-tailed lemur or with Madonna, there wouldn’t have been more focused attention. It wasn’t hostile, but it was certainly not relaxing—and it was completely different from the experience I had, for example, pushing a multiply disabled child down a pier in San Diego. Benign pity can wear thin, but it’s still easier than astonished fascination.
At eighteen, Clinton found his first summer job in finance; five days a week, he made the solo commute by scooter, train, and subway, an hour and a half each way, to the Manhattan offices of Merrill Lynch. “I want to have everything I can in my arsenal of education. My parents worry about me too much, and my way for them to let that go is for me to be financially and physically independent. I was in the hospital so much, so my parents were my best friends. Now I have no boundaries; I have no inhibitions; I want to do so much.”
The great question in Clinton’s life is mobility. For longer distances, he rides his scooter. He is in pain whenever he walks any distance—much sooner than Taylor van Putten, for example. “My hips and knees and joints are real bad. There’s a lack of cartilage between the bones. The cold makes it worse.” Despite this, I was impressed at how gracefully Clinton could swing his body around. He could weave his unbending fingers around the handle of a fork or a knife. “I figured out a lot by myself. I used to pick up pizza or a sandwich and put it on the top of my hand. Writing, I use two fingers. If I could change one thing, I would love to walk like a normal person. But I’m dancing all night; I’m doing everything.” In fact, when I first met Clinton at LPA, he was dancing; he stayed long after I’d gone to bed. The next day, he was hobbled with pain but also on cloud nine, and he teased me about being the only person of average height on the dance floor: “You stuck out like a little person.”
The summer job Clinton had at Merrill Lynch was in their legal department, filling out forms, and he was determined to secure a promotion. After he graduated, he was hired by Mutual of America Capital Management Corporation, where he prepared income statements and reports for technical analysts, obtained real-time stock quotes, and helped brokers identify trends in certain Internet stocks. During his time there, he had a bad experience with inadequate access on the subway. He obtained permission to address the board of the New York Metropolitan Transportation Authority at their next public meeting. Arriving at the midtown conference room, I found a mob of his friends and relatives who had turned out to support him. “I am standing in front of you as a representative of all disabled citizens of New York,” Clinton said, poised and confident. “My story is of a violation of the Americans with Disabilities Act, a violation of civil rights, and a blatantly dangerous situation presented to all wheelchair-bound citizens who use the MTA’s subways and trains. The purpose of this speech is to illustrate what is going on out there in your transportation system, let you know what it means to the people it is affecting, and drill down to a resolution. I am asking you to be my teammates in a quest for equality, and to work to fix this issue.” At breakfast afterward, Cheryl confided in me that she could never, ever have done such a thing.
Cheryl said she thinks often about whether she would have wanted things to go another way. “When he was born, one of the nurses started crying and said, ‘Oh, I feel so terrible. Why you? You’re such nice people.’ I said, ‘Why not us?’ Would I trade it? I would never trade it now.” Clinton Sr. agreed, “I have to work with new, young guys on the job, and when they’re lazy or say they can’t do certain things, I don’t tell ’em it’s my son, but I mention that I know someone that it takes half an hour to get dressed in the morning, just to get outside and breathe fresh air. ‘You guys have two hands, two arms, and a head. You’ve got every God-given tool you could have, and you’re wasting it.’” He paused. “And you know what? I used to waste it, too. I learned that lesson from Clinton myself.”
Both Cheryl and Clinton Sr. are somewhat in awe of their son—his courage, his academic and professional achievements, his big heart. “I don’t think we did anything to make him into him,” Cheryl said. “What did I do? I loved him. That’s all. The other day these people, much higher up than us socially, much more educated, called me up and said they couldn’t handle this. They were in Texas politics and thought the stigma would be harmful to them, and they gave their baby up for adoption. That’s just what they were going to do, and it’s the opposite of what I was going to do right from the beginning. The other day Clinton came home, and he goes, ‘Ma, I saw a blind man today with a stick, in Manhattan. There were people rushing back and forth, and he was all alone. I just felt like crying, I felt so sorry for him, so I offered to bring him to where he needed to go.’ Clinton just always had that light in him, and we were lucky enough to be the first to see it there.”
Excerpted from FAR FROM THE TREE: Parents, Children, and the Search for Identity. Copyright © 2012 by Andrew Solomon. Excerpted with permission by Scribner, a Division of Simon & Schuster, Inc.
© 2012 MSNBC Interactive