Ryan White - My Own Story (19 page)

When I breathed, I rattled. Sometimes I ran out of breath completely. In the middle of a conversation, I’d have to stop talking, rest my head on my hands, and take some short pants. My voice sounded thin and squeaky, like I had permanent bronchitis. My nose ran, and my chest felt tight. My hearing had gotten peculiar. Sometimes it was so sensitive that when Mom cooked bacon, the hissing sound hurt my ears. Other times, I could barely hear what someone was saying to me.

I hardly ever went out. Now and again we had to go see Dr. Kleiman, or I went along on Mom’s errands, or we’d go for Mexican food in Noblesville, the next town. Sometimes people stared, but only because they recognized us—not because they didn’t want us around. At least we were just another family here. But I couldn’t be far from a bathroom because I was throwing up a lot, or I might need to warm my hands under the hot-air dryer.

Even though I was having trouble keeping food down, you could still tell I was a teenager—I always wanted to eat. Whenever we ordered dinner, I’d ask for nachos to start, and then French fries, steak, and cheesecake. After a few bites, though, I was usually too worn out to finish. Long before dessert, I’d start bugging Mom and Andrea to take me home again. Once we got there, the first thing I’d do was turn off the air conditioning. They probably weren’t pleased—Indiana summers can be up in the nineties and sticky—but they never complained. My whole family was very worried about me, except for Andrea, who always told everyone, “Nothing is ever going to happen to Ryan. He’ll pull through.” The press had started to say that I was dying.

My personal philosophy on that subject was no complaints, baby, no surrender. I wasn’t quitting. I could get better, so I would. I liked the Cicero cemetery fine. It looked green and peaceful. But I wasn’t about to be carried out there yet.

I watched TV ’til I thought I was going to disappear inside the set. Nothing had changed—the Cubs were underdogs again. Every week I saw some outfielder trying to dig a ball out of the ivy on the wall of Wrigley Field. You’d have thought the Cubs would be world champs now that they had a player named Ryne—Sandberg that is, the star second baseman. I was glad I was called “Ry-man” instead of “Ryno,” the fans’ name for Sandberg. I decided I liked Vanna White on
Wheel of Fortune,
though not as much as Alyssa Milano. When
Playboy
published some photographs of Vanna, I kept after Mom to buy the issue for me. Mom said she was embarrassed, but one day she came home with the magazine inside a grocery bag. “From now on, you’re not getting
everything
you want,” she scolded me.

I tried to keep my mind on stuff I wanted, good stuff. In spite of all the grief we got in Kokomo, we’d been able to see and do a lot. Like the times Greg Louganis, the diving champion who won four gold medals at the Olympics, had visited with us in Indianapolis. He turned out to be not all that tall, but
there
was someone with muscles! Dr. Kleiman wouldn’t give me steroids, but maybe there was another way I could look more like Greg. The first time he called us up, we were still living in Kokomo. He’d heard about us on CNN, and he was coming to Indianapolis for the U.S. Diving Championships. Lots of famous athletes show up sooner or later in Indianapolis because of all the great sports facilities that have been built there for events.

Greg invited all three of us to come watch him compete a couple of times. The first time, he gave me the medal he won, the 38th National Title Medal. While he was talking to some reporters, he let me climb up to the ten-meter platform. The platform was tiny, and it was a
long
way down to that pool. I held on tight to the railing the whole time.

Once both my feet were flat on the ground again, I told Greg, “Man, you gotta be nuts to
dive
off that thing!”

Greg laughed. I guess he’s heard that from lots of people besides me. He told me he knew how it felt to have other kids in school give you a hard time. All the way through school, he had a lot of trouble doing his work. His classmates called him “stupid” and most of his teachers decided he was retarded. He didn’t find out what was really wrong until he was eighteen. It turned out that he has dyslexia, which means you see letters in the wrong order when you read. It must be really tough to have everyone tell you you’re stupid, know you’re really not, but not be able to get them to believe you.

Later on, Greg invited the three of us plus my grandparents to come see him again at a theater in Indianapolis. He was making his debut as a professional dancer. I liked that—he was already a big deal diver, but he wanted to plunge into something new. Greg was really excited when he found out that my sister was a champion too. Andrea had been invited to roller skate in the opening ceremonies for the 1987 Pan-American Games which were going to be held in Indianapolis. It was a giant step forward for her—and for roller skating. Greg was competing in the Games, and gave Andrea some exercises and tips so she wouldn’t get leg cramps. And he gave me one of the two gold medals he won at the Pan-American Games. He said, “I’d give you both, but I’m afraid my mother will kill me. She’ll want one of them.”

Ryan and Greg Louganis with Greg’s gold medals from the 1987 Pan-American games.

Next time we were in L.A., Greg said we could come visit him at his house in Malibu. He thought I would love his new pool and his view of the Pacific surf. I couldn’t wait to try surfing. I remembered the party Elton had thrown for me at Disneyland the fall before. Ever since then I’d wanted to go back to California really, really badly. When I had finally gotten out of the hospital, Elton had flown all three of us out to L.A. I couldn’t believe we were actually there until we walked out of the airport. There in front of us was a row of palm trees. And I was finally warm enough!

Before we had left Indiana, Mom reminded me that when I was first trying to go back to school, we’d heard that Rock Hudson had AIDS. “Everyone is running scared now,” Mom said. “So please don’t do anything like sharing sodas or lollipops—that might upset people.”

But we didn’t have to worry. Elton passed cans of Coke back and forth with me, and hugged and kissed and joked around with all of us. Elton’s always like that, the whole time you’re with him.

From L.A., Elton flew us in his private jet to two of his concerts, one in Oakland and one in San Diego. Andrea and I got special sweatshirts and scarves and sunglasses to wear at the concerts. Elton even gave me the beanie he wore on stage.

When we got back to L.A., Elton had arranged a tour of Universal Studios and a party at Disneyland for us. To get us there, he had two limos, and a bus for his band and their families. Elton rode in one limo, which had a sunroof, and we followed in the other. Every now and again, Elton’s limo would pull over and he’d stand up and wave at us and anyone else around! It was pretty funny.

At Universal, we got to see Marty McFly’s high school and the soda shop from
Back to the Future!
I was still pretty weak from being in the hospital for so long, but there was no way I wanted to miss a minute of this. So at Disneyland, Elton got me a wheelchair and pushed me around himself.

Andrea, Elton, and Ryan at Elton’s party for them at Disneyland, 1987.

Elton didn’t forget about us afterward. When Andrea’s birthday rolled around in October, he sent her red roses. He called us now and again from wherever he was touring, to see how we were getting along. We got handwritten letters from him, postmarked all over the world.

I
LOOKED
over our Disneyland photos, of Elton and me in wild sunglasses. At least I wasn’t quite as skinny now as I had been last fall. I could use a few extra pounds though. Maybe I could talk Mom into taking up Mexican cooking.

Something else I thought about was where I’d go from here. After all, the fighting was over, and we’d won. I
was
back in school, though I wasn’t sure what my new one, Hamilton Heights, was going to be like—assuming I could keep awake long enough to go. Mom and I had gone to see Mr. Cook and Mr. Dillon, the principal and the assistant principal, about my registering. It turned out that they were expecting us. One parent who was a real estate agent had already called to tell them that we had bought a house in the school district. Hamilton Heights was happy to have me, Mr. Cook said, if I was really serious about school.

I said what I always said. “I like school. I want to be with other kids.”

Mr. Cook smiled. “Let’s go register,” he said, and he led us to the cafeteria to line up at the registration tables with everybody else.

I was pleased, but I’ve never liked starting a new school. Especially not this time—I had no idea what to expect. I’d managed to open a few doors for myself, but that could mean that I’d find more of them slammed shut in my face than ever. For starters, I wasn’t sure I’d feel well enough to start school at all. If I did, things were going to be a little awkward because I was going to be a freshman when I should be a sophomore. And there was something else I wasn’t sure of: I’d meet plenty of kids who had only seen me on television. They didn’t know the first thing about the real me, and they might not bother to find out.

Around this time a reporter asked me, “Who’s your best friend?”

I had to tell the truth. “I don’t have one,” I replied.

Now that we were in Cicero, I wanted more than a quiet life. I wanted friends my age. We’d left everyone we knew behind in Kokomo. In one way, that was good. I really wanted to put the past behind me so I wouldn’t be bitter. But now there was no one except my relatives who would know what I meant when I said, “Remember back
before
I was in the news so much?”

Maybe everyone I met at Hamilton Heights would think, He’s friends with Elton John—he doesn’t need us. That was one thing I’d noticed: Fame can isolate you just as much as AIDS. Or maybe kids would try to get close to me only because I was famous, not because they liked me.

Well, I wasn’t going to find out by sitting home in front of the TV. I had to move ahead, or else things would start gaining on me. I had to believe that I had a purpose. I must be good for something. The winter before, when I was still feeling pretty well, Dr. Woodrow Myers, the state health commissioner, invited Mom and me to speak at a state conference on AIDS. Dr. Myers asked me to give the crowd some advice.

“Whatever you do, please don’t isolate us,” I said.

Guess I had to take my own advice right now. I certainly knew I had to keep on getting myself out of the house, just to educate people. They kept imagining that AIDS was a dirty word, a slimy disease. If they saw me walking around, shopping, looking normal, I figured they might have more compassion for people like me.

In Kokomo, fear had gotten the better of everybody. I understood that. No one was really against me; they were against my disease. Parents were worried about their own kids. When I first heard I had AIDS, I was just like everybody else in Kokomo: I was scared, and so was my family.

But the more I thought about what had happened, the more it seemed to me that fear had taken control of adults in Kokomo. Once that happened, they believed whatever they wanted to believe about me and AIDS. Many kids who called me names were only repeating what they’d heard grown-ups say. Kids in Kokomo were just doing what kids do—listening to their parents.

So when I thought about what I’d do next, I decided that if adults ignored the medical facts, I ought to concentrate on talking to kids. Most adults are pretty set in their ways, but kids are still learning. If I hung out with kids, talked to them, maybe they’d go home and change their parents’ minds.

I wasn’t the only one who had this idea. I mentioned that we were able to move because we got some money from a movie company, plus Elton lent us enough extra to make a down payment on our house in Cicero. Actually, we had had several movie offers, but we picked the Landsburg Company. I had seen a couple of TV movies they’d already made about real people, and I really liked them. One called
Adam
was about a kid, younger than I was, who was kidnapped from a parking lot. Another movie, named
Bill,
was about a retarded man, and a filmmaker who starts to make a documentary about him. The filmmaker winds up making friends with Bill, helping him find a job and learn to look after himself. The real Bill even ended up visiting the White House (the
real
White House). These movies were grim in places, but they kind of gave you hope at the same time. I liked that.