A Different Life

I feel like I’m always in a battle. It’s Omaha Beach, and they’re shooting bullets at you from above. The guys on the cliff who are shooting at you are the people who never had a problem. I’m dodging bullets all the time. Sometimes I feel like a soldier from the Civil War. You’re holding your old musket, but you realize it’s modern times. And the enemy is expectation. I’m always fighting expectation. Sometimes it feels like battle after battle, day after day.

Surfing is a lot harder than it looks. But there was something that was telling me to keep on doing it. A religious type of feeling, a spiritual type of feeling—something. Nobody can really help you do it, either. You have to do it yourself. Somebody can open the door for you, but you have to walk through it. Sometimes I’m scared of working hard to become good at something. What if I fail? But with surfing I said, “I’m going to learn how to do this if it kills me.”

And when you ride that wave, you conquer that wave when you’ve caught it, but you become part of it, too. It’s just like conquering a part of your life. It’s knowing that you can do things that you’d never thought you would be able to do, like an invitation to become something greater than who you are. It’s a sense of accomplishment that doesn’t happen to me a lot. It’s the greatest feeling that you can get.

I was born with a hole in my heart. They had to open my chest when I was three months old to fix it. Most of what I remember of being young are hospitals. I was always in there for something: seizures, migraines, fevers, tests, re-tests, whatever. I spent more time being sick than I did in school some years. At least it felt that way.

And when I was in school, I had some trouble there, too. Nobody ever knew what was “wrong” with me, and I got passed around. A lot of people told me and my parents that I’d never do a lot of the things that I’ve done. One of my favorite things in life is proving those people wrong.

When I was fourteen, I was diagnosed with velo-cardio-facial syndrome (VCFS). VCFS is a genetic syndrome, but most of the time it occurs in children of “normal” parents. It affects about 1 in 2,000 people worldwide, making it the second-most-common syndrome after Down syndrome. The main symptoms of VCFS are trouble with your heart, some trouble with your speech, and learning disabilities. There are also more than 180 physical symptoms, everything from scoliosis to tapering fingers, and each person who has the syndrome has a different mix. Some people never even know they have VCFS, and some people have it so bad that they don’t live through it. Mine is a pretty mild case. I guess that’s why it took them so long to figure it out.

I’m writing this book because most people don’t know anything about VCFS or what it’s like to grow up with learning disabilities. When people ask if I’m learning disabled, I tell them that I’m dyslexic. This isn’t technically true, but it’s easier than explaining the whole syndrome. I do have trouble reading and processing what I read and hear, but that’s not all. There are a lot of different symptoms of VCFS, so it’s more complicated.

In the end there’s nothing incredibly special about me. I’m just a kid who was born into a distinguished family, and so maybe I have a better chance than somebody else does to explain. Maybe I have more responsibility, too.

Last year I helped make a documentary called Living with VCFS. Now I have launched a Web site where kids and young adults with all different kinds of learning disabilities can go to talk to each other and form a community. (Or maybe just pick up chicks.) I wish I’d had something like that when I was younger. I’m hoping this book can help with that, too.

I couldn’t have put this whole book together by myself, even though I know everything that I want to say. Over the past seven years, I had help from Kyle Gibson and Jeff Himmelman (who have interviewed me a lot), and from my parents, doctors, and some of my teachers. That’s where most of this material comes from. I wrote some of it myself, but I didn’t sit at the computer and arrange everything in this form. That’s why I needed Jeff. Well, that and the free guitar lessons.

There are parts of my past that I don’t remember, and parts of my medical history, too. I think when you have a tough time, you don’t really want to remember. That’s part of it as well. In those cases my mom and dad fill in the gaps, or my doctors. It’s the only way I could really give you a complete picture.

I’m not a huge reader. But one of my favorite books of all time is The Adventures of Huckleberry Finn. I love the language. Twain writes like his characters would talk. That made it easier for me to understand. This book is how I talk. If Mark Twain did it, why can’t I? I hope it turns out okay.

Anybody who knows me knows that I’m a little obsessed with my ancestry. I spend hours doing research on the Web and trying to figure out everybody I’m related to. I use ancestry.com a lot. I probably keep those guys in business.

Someday I want to write a whole book about it, but I know it’s kind of hard to be interested in somebody else’s family when you have nothing to do with it. One thing of interest that I discovered is that my grandparents on my dad’s side were fourth cousins. Maybe that’s why I came out a little funny.

But since this is my book, I do want to tell you a little bit about my heritage. I’m proud of my family and of being a part of it. Sometimes I feel a little out of place, that the only thing that sets me apart from anybody else is my disability. Tracing my family roots back, seeing that I’m part of a long line of strong men and women, usually makes me feel better.

My dad is Benjamin Crowninshield Bradlee, descended from a long line of Crowninshields through both his mom and his dad. He was the editor of the Washington Post for twenty-six years. (Jason Robards played him in All the President’s Men.) To me he’s mostly just my dad. I didn’t realize how important his job was for a long time, because he resigned as the editor when I was nine and I never really saw him in action. He is one of the most modest people in the world.

One of the first times I realized that my dad was kind of a big deal in Washington was at Kay Graham’s funeral. She was the owner of the Post for a long time, and like an aunt to me. She was a different kind of strong. There were a lot of famous people at her funeral, and when my dad spoke, he cheered up the whole church. I’m always proud that he’s my dad. He’s great at cracking jokes and making other people feel good about themselves. But on a day like Kay’s funeral, I realize how much he means to other people, too.

There were a lot of illustrious Crowninshields on my dad’s side. I won’t bore you with all of them, but Johann Kasper Richter von Kronenschieldt (try saying that fast ten times) was the first to come to America, so in a way he’s one of my most significant forebears. My dad’s great uncle, Frank Crowninshield, founded Vanity Fair and nurtured a lot of literary talents, F. Scott Fitzgerald and e. e. cummings among them.

My dad’s mom was Josephine deGersdorff. The most interesting thing about her is that during World War II, she helped French children who were sent to America to escape the war and the Nazis. Because of her heroism, she was awarded the Legion of Honor, which is the highest honor any civilian can receive from the French government. (My mom’s dad received the same medal, and last year it was awarded to my dad. Maybe someday I’ll get it—or at least here’s hoping.) My paternal grandmother was also a great singer, and she could curse in German. I’m sad that I never got to meet her.

I’m also sorry that I never met my dad’s dad, Frederick Josiah Bradlee Jr. Like most Bradlees since about 1730, he went to Harvard. You can trace Bradlees back to the 1630s, when John Bradley came over from England. The story goes that the family name became Bradlee when a man named Samuel Bradley was running for office near Boston and people kept confusing his name with another Bradley. During the Revolutionary War, the British had a royal warrant to arrest, and I believe shoot, any Bradlee.

My grandfather graduated from Harvard in 1915. He was an all-American on the football team, and his main position was fullback. Later in his life, he could apparently drink like a fish without ever getting hung over. (How he did this is a mystery to me. I wish I had inherited that ability.) He worked his family out of the Depression when it hit, with a series of odd jobs. And he was really cool about the fact that my dad’s brother Freddy was gay. In those days I think that was probably pretty rare.

I was lucky to become really close with both of my mother’s parents. My mom is Sally Sterling Quinn, Scotch-Irish, raised in Savannah, Georgia, and nobody to be messed with. Good luck if you want to try. My dad is basically retired, though he still goes into the office every day, but my mom is still a working journalist. I watch her ask people questions sometimes and she knows what she’s doing. She also throws great parties. She’s a powerful lady. If I had to sum her up all at once, I would say that she has been the archangel of my life, always pushing me.

My mom’s mom was a Williams, and apparently we are related to William Williams of Connecticut, who was one of the fifty-six men who signed the Declaration of Independence. The biggest tragedy of the Williams side is that my great-grandfather, who was a respected surgeon in Savannah, was a friend of John Stith Pemberton, who invented Coca-Cola. John asked my great-granddad to try a sip of his new invention to see if he might want to invest. When he tried it, my great-granddad said he wouldn’t give Pemberton one cent because it was the most awful taste he had ever put in his mouth. We could have been billionaires.

My grandma, Sara Bette Williams, was a southern belle from Savannah, Georgia. I called her Nana. In her obituary it was said that she had the sexiest legs in all of Savannah. She was also the best cook in the whole wide world from my experience, and the best grandmother. She basically cooked everything in butter or in bacon grease. Fattening, but man, was it good. I used to spend a night or two a week at my grandparents’ apartment in D.C. when I was a kid, and Nana would call me “Dollbaby” and cook me whatever I wanted. Hard to beat.

On the Quinn side, we’re descended from a young man named John Quinn, who came over from Belfast, Ireland, because he hated his step-mother. He decided to head for Jamestown to explore the new world, and was a stowaway on one of his father’s ships, the Falcon. The ship wrecked on what is now known as Kent Island. Only two survivors, the sixteen-year-old Quinn and the ship’s mate, were safely swept ashore by a wave to an oyster-shell beach. I guess the moral of the story is that John Quinn had balls, and he was a survivor. I’m happy to be able to claim him as an ancestor.

My mom’s dad, “Dandy” to me but General William Wilson Quinn to everybody else, served in the army for a total of thirty-two years. He was one of the main people who oversaw the change of the OSS into the CIA, and in World War II his regiment captured the infamous Hermann Göring. On April 29 (which also happens to be my birthday), he liberated the German concentration camp of Dachau in 1945. He also helped to plan the invasion of southern France. In the Korean War, he was known as “Buffalo Bill.” His troops were the Buffaloes, whose motto was “Truth and Courage.” Barry Goldwater was one of Dandy’s best friends. He was pretty badass.

One of my favorite stories about Dandy is that when he was in high school, his principal told him he didn’t have what it took to make it to West Point. Dandy worked his butt off and eventually got in, and during his second year of college, he went back in his uniform and paid that principal a little visit. Some eating of words, I imagine. It was an example in my family of somebody being told they couldn’t do something and doing it anyway, which is something that I try to do every day.

Dandy could also knock back some booze when he felt like it. One time when I was nine I was thirsty as hell and I reached for what I thought was a cold Coke on the table. Well, it wasn’t a cold Coke. Or if it was, it sure had a lot of whiskey in it. I guess you could say that was my first drink. I thought I was going to throw up. I never made that mistake again.

I could go on about my family forever, but you get the point. A lot of them made significant contributions to society. I would like someday to contribute to their illustrious lineage. (I tried to sneak myself onto a list of “notable Crowninshields” once, just for shits and giggles, but they took me off pretty quick.) I know I won’t be editor of the Washington Post or a famous journalist, but my family’s legacy gives me something to strive for. I don’t think it makes me better than anybody else. It just makes me want to be better.

I am the eighth generation Josiah Bradlee. I feel that that’s a responsibility. I also feel pressure sometimes to live up to who my parents are. But there’s a lot of good that comes with that, too. In the end I’m really grateful for where I come from.

When I was first born, everyone thought I was totally and completely normal. According to my mom, the nurses called me “Mr. Mellow,” because while all the other babies would scream and cry, I would just kind of look around. She also says that when she first had me in her arms, she told me that she loved me and that I could be anything I wanted to be in the world.

But pretty soon after I was born, my doctor detected a heart murmur, and when I was about three months old, I had to have open-heart surgery. (Heart defects are a pretty universal symptom of VCFS, but we didn’t even know I had VCFS yet.) I had what’s called a ventricular septal defect, where blood leaks from one side of your heart to the other. The doctors put a Dacron patch over the leak. It’s a piece of durable plastic that stays there forever, and your heart grows around it.

I think this was a pretty crappy time for my parents. They thought I might die, and I could have died. My dad and the Post were getting sued by some guy, and I think the day I had surgery was the day that he had to go into court and he lost. (He eventually won, so it turned out okay, but that day he lost.) It was not a great time for anybody.

My mom says the night before my heart operation was one of the worst nights of her life. She wasn’t allowed to nurse me. She could barely even hold me. When they took me into the operating room the next day, she basically fainted. Apparently my dad turned to her and said, “Just think of it this way. He’ll never have to go to war.”

My dad says that his favorite image of me is from just after the operation. My mom was on one side of me, and he was on the other, and I was holding their fingers. I was out cold, but my dad says that I held on, that I just held on and kept going. I don’t know if I came through that surgery with flying colors or not, but I came through. I won’t give up when it has something to do with my health. I still have a scar from that operation that goes more than halfway down my chest.

After the heart surgery, I was always sick with something. I think my parents thought that once they did the surgery I’d be fine, but it didn’t work out that way. You should see my medical files. They’re about six inches thick.