Table of Contents
To my friend and listener Justin Lee Peterson.
To the greatest parents in the world and my greatest supportersmy mom, who is my archangel, and my father, who is my sword and shield.
This book is also dedicated to my maternal grandparentsLt. Gen. William Wilson Buffalo Bill Quinn (Dandy), who taught me to always keep fighting through life, and Sara Bette Williams Quinn (Nana), who spoiled me rotten, taught me how to swear, and was the greatest cook in the world.
To my paternal grandparents, whom I never metFrederick Josiah Bradlee, Jr. (Grandpa), who went from having everything to nothing but kept on living for his children, and Josephine deGersdorff (Granny), who protected the innocent children of WWII and gave them shelter.
And to all those who
have learning disabilities.
Our family in the early days.
How It Feels, Take One
I feel like Im always in a battle. Its Omaha Beach, and theyre shooting bullets at you from above. The guys on the cliff who are shooting at you are the people who never had a problem. Im dodging bullets all the time. Sometimes I feel like a soldier from the Civil War. Youre holding your old musket, but you realize its modern times. And the enemy is expectation. Im always fighting expectation. Sometimes it feels like battle after battle, day after day.
How It Feels, Take Two
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 feelingsomething. 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 Im scared of working hard to become good at something. What if I fail? But with surfing I said, Im going to learn how to do this if it kills me.
And when you ride that wave, you conquer that wave when youve caught it, but you become part of it, too. Its just like conquering a part of your life. Its knowing that you can do things that youd never thought you would be able to do, like an invitation to become something greater than who you are. Its a sense of accomplishment that doesnt happen to me a lot. Its the greatest feeling that you can get.
The Story
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 Id never do a lot of the things that Ive 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 dont live through it. Mine is a pretty mild case. I guess thats why it took them so long to figure it out.
Im writing this book because most people dont know anything about VCFS or what its like to grow up with learning disabilities. When people ask if Im learning disabled, I tell them that Im dyslexic. This isnt technically true, but its easier than explaining the whole syndrome. I do have trouble reading and processing what I read and hear, but thats not all. There are a lot of different symptoms of VCFS, so its more complicated.
In the end theres nothing incredibly special about me. Im 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 Id had something like that when I was younger. Im hoping this book can help with that, too.
I couldnt 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. Thats where most of this material comes from. I wrote some of it myself, but I didnt sit at the computer and arrange everything in this form. Thats why I needed Jeff. Well, that and the free guitar lessons.
There are parts of my past that I dont remember, and parts of my medical history, too. I think when you have a tough time, you dont really want to remember. Thats part of it as well. In those cases my mom and dad fill in the gaps, or my doctors. Its the only way I could really give you a complete picture.
Im 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 cant I? I hope it turns out okay.
What an amazing difference between the Moderns and Ancients respecting the knowledge of navigation and geography! Here am I, a man from a new nation and a new world crossing the Atlantic Ocean, and entering the vestibule of the grand temple of the Mediterranean, where God has shown all his wonders, and produced changes among the inhabitants of the earth, that demand the profoundest researches and constant contemplation of man.
Here God has spoken to man, here he has shown his creatures his power, by new laws given to matter! Here he has instructed man in his duty and expectations, and here you see his predictions of the fate of Nations verified. When I think of these things in this place I tremble.
CaPT. GEORGE CROWNINSHIELD JR.,
my great-great-great-great uncle,
on board Cleopatras Barge
May 7, 1817
My Ancestry
