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Authors: Ryan & Cunningham White,Ryan & Cunningham White

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BOOK: Ryan White - My Own Story
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With little kids who are hemophiliacs, the main thing you have to worry about is, Will they hit their heads? If a hemophiliac starts bleeding inside his brain, he could die. When I was small, I had to go to a hemophilia clinic in Indianapolis sometimes. In the waiting room I used to see two-year-olds running around with helmets on. Their parents made them keep them on every second in case they fell on their heads. Some kids hardly ever go out in the car, either.

My grandparents tried that kind of thing with me. When I was a baby, my grandma made pads for the crib. She was afraid I’d knock myself against the bars. One day my mom heard a loud thump in my room and came rushing in. There I was, out of my crib, sitting up on the floor. No one could figure out how I managed to get there. But I was perfectly okay. Not even bruised. So after that my mom decided to relax and forget about the knee pads Grandma wanted to put on me once I started crawling, and the padding she thought we should have on all the furniture. Mom wanted me to live as normally as possible. I never did have to wear a helmet—except a play helmet when I got my first race car (the plastic kind that hasn’t got a motor, only pedals under the hood). And
that
helmet I loved to wear.

I have to say that I feel sorry for parents and grandparents of hemophiliacs, I really do. I wish I had a dime for every time my grandpa said, “That boy has no business doing that!” or “Jeanne has no right letting Ryan do this!” Grandpa carried on like that all the time, especially when I was learning to ride my bike and then my skateboard. The trouble is, just like most hemophiliacs, I’m a real daredevil.

Sometimes I was covered in bruises because hemophiliacs bruise easily. The more Grandpa complained about me, the more bruises I seemed to collect. When I was only three, I started giving my grandparents heart attacks by pedaling my new race car over to visit them all by myself. They were only three blocks away—no big deal. When I got there, I’d try to calm them down. I like arguing, so once I said, “Don’t worry about me; I’m smarter than you are, Grandma.”

“Maybe,” Grandma said, “but you sure don’t act it right now.”

Then I’d get my grandpa to push me in the swing he’d hung on a tree out back for me. I was never happy until he’d pushed me so high that my feet touched the leaves. If he wouldn’t swing me, I’d climb up into the tree and sit in the crook of my favorite branch for hours. Grandpa’d come out and holler at me to get down. Until one day he decided to spray the tree, and sprayed it so much that it died. Now that I think about it, I wonder if it was a total accident.

My mom let me do pretty much anything. She wanted me to play with other kids in the playground at recess and learn to ride a bike. She figured, if I got hurt, I got hurt. A big reason why she was so easygoing was Factor VIII, which came out just before I was born. Factor VIII is a blood product. That means it’s made from parts of the blood that thousands of people have donated. Factor VIII is made up of the clotting factor that makes most people’s blood clot normally. So when a hemophiliac gets an injection of Factor VIII, he gets a concentrated dose of clotting factor. Then his blood can clot too. And if he’s been hurt, he will heal.

Most hemophiliacs look like me—small and skinny with knobby knees and elbows from all the times our joints got swollen from bleeds. Me, I look at myself in the mirror and figure, small but tough. But I guess a lot of people, my grandparents included, think we hemophiliacs don’t look like we’re built to last. Before Factor VIII, we didn’t. Doctors told Mom that a severe hemophiliac like me could only expect to live maybe to age fourteen or fifteen. In between, he’d spend a lot of time being rushed to the emergency room whenever he got a bump or a scrape. When he got there, all the doctors could do would be to give him big transfusions to replace the blood he’d lost. Sooner or later, he’d end up bleeding to death. Before Factor VIII, quite a few hemophiliacs got so discouraged by living this way that they ended up committing suicide.

I could never see that myself. I mean, I’d certainly rather not have hemophilia. But if you feel sorry for yourself, you’ll be so down you won’t notice anything in life to enjoy. My mom always says, “That’s not how we live in The White House.” That’s what she likes to call our home. We have a shiny brass plaque by the front door that says so.

All my mom and I knew when I was growing up was that if I got myself in trouble, my Factor would help me out. Until I was five, we had to go to the hospital to get it every time I got hurt—more times than Mom says she can remember. I did manage to have three really scary accidents. The first time, I was still a baby. I was so fond of my matchbox cars—I had more than fifty!—that I would crawl around with one in my mouth, and take five or six to bed with me. Mom usually sneaked in after I fell asleep and took them all away. But once she missed one. The next morning, I was a true-to-life no-neck monster: My neck had swollen up like a balloon because I’d slept on the car all night. Poor Mom—another trip to the hospital. But the swelling went down once I had some Factor.

Mom had so much practice that she got so she knew more than most doctors about hemophilia and how to treat me. Later on, when I was three, I fell in the bathroom and cut my head open. The hospital gave me six stitches and some Factor, kept me overnight, and then sent me home. Mom said I hadn’t had enough Factor and ought to stay five or six days. The doctors said, “Forget it; he’s had enough.”

That night Mom decided to put me in bed with her. My head was all bandaged up in a turban, and she was worried I might start bleeding again. Sure enough, she woke up in the middle of the night in a puddle of blood. We rushed back to the hospital, where I got a transfusion and more Factor. If I’d been alone in my own bed, I would have bled to death.

My third accident also happened when I was three. Another kid and I were using my parents’ bed as a trampoline. I lost my balance, fell off, and banged my elbow against an electric heater. I found my mom in the kitchen and yelled, “I’ve been electrocuted!” I really thought that’s what had happened, because the blow felt like pins and needles were running up and down my arm. Well, I didn’t have an electric shock, but I couldn’t move my arm because my elbow was broken—in three different places. This time I had to stay in the hospital longer and wear my arm in a sling afterward. The worst part was the way I stood out at day care. Everyone asked me, “What happened?” When I said, “I got a bleed,” they asked, “What’s that?”—and I had to give a long explanation. It was very boring, talking about hemophilia over and over, and I sincerely wished I could be invisible until my arm healed.

This accident was also a real drag because the hospital kept insisting that I needed physical therapy, or my arm would never be right. Before Factor VIII, if you had too many bleeds in a joint, it could get stiff. Then you’d get arthritis, it would be really painful to straighten out your arm or your leg, and you might end up a cripple on crutches or in a wheelchair. So the doctor and nurses told me that if I didn’t keep coming back for therapy, my arm would get stiff. I’d never be able to even lift my arm so I could touch my hand to my shoulder. “No way I’m going to therapy,” I told them. “I’ll move my arm on my own.” I hate the idea of anything that makes me seem sick forever. Maybe I have an incurable disease, but I don’t have to be a permanent invalid. Well, after six weeks I could touch my shoulder—without bothering with physical therapy. From then on, I decided I knew a thing or two about my own illness.

I figured out a couple of other things in the hospital too. One was how to handle pain. There’s nothing great about having to stay in the hospital, but the worst part is how boring it is. If anything hurts, it’s real easy to let the pain take over, because there’s not much else to think about. You need as much distraction as possible. Once I started practicing not thinking about pain, I got to be fairly good at picking up a magazine until that didn’t work anymore, then trying the TV, and after that setting up my G.I. Joes. The trick is to have a lot of different things to do, because each one can work for only so long. My mom says I have a real talent for ignoring pain. She thinks I’m much better at it than most people, and certainly better than she is. I don’t think there’s much to it, myself—just practice.

The other thing I learned for sure in the hospital is that hemophilia isn’t the worst problem a kid can have. I met plenty of kids in bigger trouble than I was. Hemophilia’s not nearly as painful as cancer, where you might need treatments that make you vomit all the time, or make all your hair fall out. I felt for kids who had to have chemotherapy. Being bald at age three would kill me right there! Then there are horrible burns, or having something wrong with your mind, or all kinds of defects and other diseases you might be born with that mean you need operation after operation. I’d already decided that I didn’t
have
hemophilia—I was living with it. You
can
feel well no matter what’s wrong with you. I think that’s the only way to think.

Besides, with Factor VIII, hemophilia didn’t seem that bad. As I got bigger and didn’t fall over so much, most of the time I stayed well. By the time I was five, the hospital said I could start having regular injections of Factor at home, as a precaution. Once a month, Mom picked up a fresh supply for me from the hospital. We kept it in the refrigerator in big plastic bags. Sometimes we didn’t have much food, but we always had plenty of Factor VIII. My pediatricians taught my mom how to tie a tourniquet around my arm, find a vein, and inject the Factor. It’s not the easiest thing to do, and it always stung—you know what a blood test feels like—but Mom got to be better at it than a lot of nurses I met in the hospital. We always used a vein in the crook of my right arm. I took to calling it “Old Faithful” because it worked so well. I could shut my eyes, lean back, and relax. Mom gave me injections two or three times a week—unless I had a bleed, then I needed more Factor more often, sometimes every day.

Still, when you have a disease, any disease, sometimes you just plain hurt. Some days I’d wake up stiff and sore for no reason. But I can’t stand being babied, so I never said anything. I just did my best. Even when I had a bleed in my knee, I wasn’t going to limp and shuffle around like I was ninety years old. If I did, kids would make jokes like, “What’s wrong with you
this
time?” But sometimes someone would guess how I was feeling, which I hated.

There’s a big park in Kokomo called Highland Park. My mom and her brother and sister played there when they were growing up, and I guess that’s partly why my grandparents loved to take Andrea and me there. Sometimes we went with my cousins. The most interesting parts of the park, in my opinion, are the stump and the bull. In a big log building, kind of like an extra-large log cabin with glass windows, you can see a huge stump of a sycamore tree here in Indiana that grew to be 100 feet tall. When a wind storm finally blew it down, it was 800 years old. Behind the next window is a giant stuffed bull who weighs nearly 5,000 pounds. The sign says, “A Whole Lotta Bull.” The biggest bull that ever lived came from Indiana! Maybe that’s not so hard to believe.

Andrea, age two, and Ryan, age four.

Andrea, age four, and Ryan, age six.

The park also has some Indian trails that run along a brook. Andrea never wanted to look at the bull and the stump. She was always out on the trails, looking for alligators and snake holes. I knew there weren’t any—I thought the trails were pretty stupid—so I practiced jumping off a bridge into the brook, to see if I could splash anyone on the banks. After one jump—yow!—my leg hurt. I went right back up on the bridge to try again. But my grandmother had spotted me, and she said, “Ryan, when you don’t want anyone to know you’re hurt, you walk straight as a stick.”

Ryan, age thirteen, and Andrea, age eleven.

BOOK: Ryan White - My Own Story
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