Ryan White - My Own Story (2 page)

That nearly happened to me, only three days after I was born, because no one ever expected me to have hemophilia. It was a big shock to my doctors and my relatives. You can’t catch hemophilia from anyone. You have to be born with it, because it runs in families. Women carry the hemophilia gene and pass it on to their babies. But usually only boys actually
get
hemophilia—and just one out of every 10,000. The weird part was no one in my mom or my dad’s family had ever had hemophilia, as far back as anyone could remember. So I started out my life as a mystery!

When the doctors couldn’t stop me bleeding that first time, they rushed me to a hospital in Indianapolis. They had to give me lots more blood to make up for what I’d lost, and something to make my blood clot. They did it through twenty-one pinholes they made in a pattern all over my head. Babies don’t have enough veins anywhere else, so they shaved part of my head and gave me a Mohawk. My mom showed me a photo she took of me in the hospital.

“I look like a punk!” I told her. “At least I started out looking hip.” I always like to look good—makes up for being sick. Remember John Travolta in
Saturday Night Fever
yelling at his father for mussing up his hair? “Don’t mess with the hair!” That’s me.

I was too young to remember anybody making holes in my head, of course. But from ages two to four, I had to go to the hospital two or three times a month. When you’re the first hemophiliac in a family, you have a real bad case. So all my life, I’ve always, always hated hospitals and I’ve worked as hard as I can to stay out of them.

As far as I’m concerned, the main problem with having hemophilia is grandparents. Every so often my mom would cry and tell me that she felt bad because she gave me hemophilia without knowing it. I would just tell her, “Stop. Don’t think about it.
I
don’t.” Which is true.

Most of the time, though, Mom was pretty cool about the whole thing. Not her parents—my grandparents. I was their first grandchild, and they were very proud. My grandmother carried around some photos of me in a little leather folder with “Grandma’s Brag Book” in big letters on the front. Still, I guess my grandparents thought it was their job to worry about me. They’re like that; they worried about Mom too. She was their oldest, so they were probably extra cautious. Before Mom married my dad, she had another boyfriend named Wayne—same name as my dad’s, actually. The first Wayne was from Georgia, and my grandparents were scared stiff that my mom would marry him and move away from Kokomo. People in Kokomo like it so much that they have trouble imagining how you could get along any place else.

Kokomo is pretty much smack in the middle of Indiana, in the middle of the Midwest. Indiana is a big, flat state with quite a few pigs and cornfields. There are some big cities here—Michael Jackson comes from one of them, Gary—but mostly you have small towns and farms. John Cougar Mellencamp is from Indiana, and one way you can tell is that he sings about being born in a small town.

People who live in Indiana talk all the time about how great a state it is. We even have a special name picked out for ourselves—Hoosiers. It comes from “Who’s there?” In Indiana, all the license plates say “Hoosier Hospitality.” If you’re planning to pay a visit and take us up on our hospitality, you should know that there are a few things that everyone in Indiana talks about. Most kids here—girls and boys—are really into sports: Thev play ’em, they cheerlead ’em, they watch ’em on TV. Especially basketball. Everybody, I mean everybody, knows how well the Indiana University basketball team is doing. Usually they’re doing very well—often they’re national champions. If you don’t want people to think you’re ignorant you’d better know who Bobby Knight is. He’s the I.U. coach, he recruits all the star players, and he
is
college basketball in Indiana. We also have a professional basketball team, the Indiana Pacers, and a pro-football team, the Indianapolis Colts.

Most every house here has a basketball hoop outside over the driveway—and my house is no exception. My mom’s younger sister Janet moved to Birmingham, Alabama, after she got married. Janet loves basketball so much that she gets her younger brother, my uncle Tommy, to tape all the I.U. games and mail them to her so she can watch them in Birmingham, and then she and Tommy dissect the games over the phone for hours.

Besides basketball games, everyone here goes to church. There are over 300 churches just in Howard County, where Kokomo is. If you live in a small town, church and school are the two places you can see all your friends. When we lived in Kokomo, we went to church with my grandparents every Sunday. Kids
and
grown-ups all go to Sunday school. My mom taught Sunday-school classes for ten years. You pray at home with your family—at least, we always do. It’s been a big help to me. And if you turn on the car radio on Sundays, you’ll probably hear a preacher preaching.

You’ll also hear a lot of talk here about cars, especially from me. Basketball is okay, but when you have hemophilia, you can’t play sports too well because you might get hurt and start bleeding. So I love cars. When I was really little I collected matchbox cars. Now I would love to collect real cars! I’ve had two, and I’d really like an old ’65 Mustang or a Saleen—that’s a very expensive customized car made in California. Right now all I can do is look at photos, go to car shows in Indianapolis, and dream. I always check out
Mustang Monthly
—that’s my magazine. I have all the back issues.

Every year in May we have the Indy 500, the Indianapolis 500 speed race at the track in downtown Indianapolis. When spring’s here, my high school has “Skip Day,” a special day when you can officially skip classes to drive down to the track, watch the race cars practice, look them over, and meet some of the drivers.

Even though there are some pretty cool things to do in Indiana, I’ve spent a lot of time bugging my mom to let us move to California to get away from winter. Especially once I got AIDS, I was always cold. And I’d love to go to race-car driver’s school out there. But until we moved to Cicero, my mom never wanted to leave Kokomo, much less Indiana. That’s how most people in Kokomo feel.

For Indiana, Kokomo’s a good-sized town—nearly 50,000 people. When you’re driving into Kokomo, you see big signs along the highway that say “Welcome to Kokomo—City of Firsts.” People in Kokomo love to tell you about our Firsts—all the things that were invented there. There used to be a McDonald’s in Kokomo that had models of all our Firsts up on the walls. Some of them look pretty strange. It’s hard to tell what they are, especially when you’re eating French fries at the same time. Most of Kokomo’s Firsts aren’t things you’d think would put a place on the map. Like the first canned tomato juice. The first mechanical corn picker. You get the idea. Actually, most of the Firsts have something to do with cars, so they stick in my head. The first car made in a factory came from Kokomo. So did the first modern rubber tire, the first carburetor, and three different kinds of car radios.

Almost everybody in Kokomo, you see, lives off of cars. Some streets in Kokomo are even named after cars. I used to ride my bike around Cadillac Street, Chevy Street, and Olds Street. All General Motors cars. That’s because just about everyone in Kokomo works at Delco, a division of GM that makes electronic parts, mostly for cars. People tell you they work at “the plant,” but there are really ten gigantic, gray Delco plants in Kokomo. Each one goes for blocks and blocks. There’s a Chrysler plant in Kokomo too, and some other factories, but not so you’d notice. Delco is pretty much where everyone is at. Where the jobs pay good money.

Lots and lots of people in Kokomo finish high school, go to work at Delco, and end up marrying someone they’ve known most of their lives who works at the plant too. Then their children grow up in Kokomo and do the same thing. That’s exactly what happened to my grandparents and my parents. My mom graduated from Kokomo High School, where she hoped I’d end up. Now she’s so disgusted with the way the town treated us, she won’t go to reunions or to see the Wildcats, the school’s basketball team. But when she was in high school, she was the biggest Wildcats fan that ever was.

After high school, Mom became a Delco Dolly—that’s how a popular radio show in Kokomo, called “Male Call,” refers to women who work at the plant—and then got married and had me and my sister Andrea. My grandparents have some hilarious old home movies of my mom and dad up at a trailer they had at Lake Manitou, about one hundred miles from Kokomo. They look real sixties—my dad has a convertible, and my mom and my grandmother have those big beehive hairdos that look like nests sitting on top of their heads. Whoever was holding the camera even caught some shots of my mom wearing humongous rollers!

I love my mom a lot, and I feel proud when I see some of the pictures of her that my grandma keeps in her old photo albums. My mom—her name was Jeanne Hale—was very pretty. My grandmother loves those old movie stars from the forties. Tyrone Power is her major heartthrob. She’s such a big movie fan that she named my aunt Janet after Janet Leigh—my aunt’s middle name is actually Leigh—and my mom after Jeanne Crain, because they both had curly hair. Jeanne Crain’s hair was flaming red, but it looked dark like Mom’s in black and white movies. There’s one shot of Mom lounging by a swimming pool, wearing a white bathing suit and a ribbon that says “Miss Kmart of 1964.” Sometimes when I want to get her riled, I call her “Miss Kmart.” Usually she just rolls her eyes and ignores me. When I was only two, I was the poster boy for the Howard County Hemophilia Society. I was kind of carrying on a family tradition, I guess.

My dad, well, I wish I could tell you more. We don’t have a lot of snaps of him. Mom and Dad divorced when I was seven and we didn’t see Dad much at all after that. We do have pictures of my parents’ wedding, with them cutting the cake and kissing and looking happy and sipping champagne all at the same time. My dad is smiling away, and I can see that I look just like him. Except that I have dark hair and brown eyes, like my mom. My sister Andrea, who was born when I was two, has my dad’s blue eyes.

My dad’s name is Wayne White, and he still lives in Kokomo and works at Delco. He and my mom knew each other from grade school. My mom says she couldn’t stand him back then. He used to yell, “Hey Hell!” whenever he saw her. He was making fun of her family name, Hale—probably just his way of letting her know he had a crush on her. But she thought he was a smart alec, trying to embarrass her. She said she couldn’t wait to get married—just to change her name! Later on, after they’d both finished high school and my dad was out of the service, they were both working at Delco. My mom was dating the other Wayne from Georgia. He was in the Air Force and was stationed at a base north of Kokomo for a while. After he and my mom started to really like each other, wouldn’t you know, the Air Force discharged him and sent him home to Georgia.

My grandparents were relieved because they were so worried he’d take my mom back to Georgia. Meanwhile, my dad started asking her out. He didn’t seem as bad as he had in grade school, so she started going with him, and after three months they got married, in 1968.

The other Wayne had been trying to reach Mom all along. Finally, my aunt Janet told him how to get in touch with her. So they did talk on the phone. But my mom was already married to Wayne White, so they had to say good-bye.

By 1971 my mom was expecting me. People in Kokomo like to say it’s a great place to raise a family. For a lot of families, it is. Once you get away from the plant, the rest of Kokomo is ranch houses and streets with backyards and sidewalks for kids to play on. Dad and Mom had an older brick house with a big front porch. Mom really loves to decorate and fix up any place she lives in. So she made curtains and trimmings for my room out of yellow and orange gingham. Later on she got my dad to outline pictures of Snoopy and his doghouse on the walls, and she painted them in. One day she went to see
Love Story,
and she liked it so much that she decided that if I turned out to be a boy, she’d name me Ryan, after Ryan O’Neal. He was the star—it was his first big movie, although Mom had already been following him on a soap,
Peyton Place.
I’ve never seen
Love Story,
but it sounds romantic. I guess Mom thought so too. When I was sixteen we actually met Ryan O’Neal at an AIDS benefit in Los Angeles. My mom told him she’d named me after him. Ryan O’Neal said, “I always wondered about that!”

Mom was hoping for a boy so bad, because she wanted him to play basketball for the Kokomo High School Wildcats. I was born long and skinny, and Mom was tickled to death. She thought, I’m going to have my basketball player.

Big mistake! The doctors told her I’d never play any sport and if I were ever in a terrible car accident, I wouldn’t live. For a while she was scared to let me ride in a car. Then she thought, Well, at least there’s nothing else wrong with him.

When I finally did come home from the hospital, with marks all over my head from the doctors’ pinholes, poor Mom had her hands full. If you’re looking after a baby with hemophilia, you don’t just think, What if he cuts himself? Any time a hemophiliac falls down and knocks his elbow or bumps his knee, he can start bleeding from a broken blood vessel or vein. The blood has nowhere to go, so it swells up in a joint. You don’t see any blood, but your knee or elbow gets very swollen and may turn black and blue. It’s as though your body tried to pour a quart of milk into a pint-sized container. If you know a hemophiliac, and he comes to school with his arm in a sling, or on crutches with an Ace bandage on his knee, and he tells you, “I got a bleed,” that’s what’s going on. He had an accident, and he’s probably hurting, even though he hasn’t got any cuts. He’s going to be in a lot of pain until clotting plugs his torn vein or blood vessel, and the swelling in his joint goes down.