Ryan White - My Own Story (26 page)

Ryan and the Ray brothers and their sister when Surgeon General Koop honored them and their schools for commitment to AIDS education, 1989.

When the movie was broadcast, the NEA sponsored a special screening in Washington and recommended that teachers use it in schools. I wanted to make the movie because I was hoping that what we went through will never happen to anyone else again. But plenty of people in Kokomo complained anyhow. They called Dick and Charlie and said, “Why didn’t the movie show our side?” They didn’t seem to learn anything from anything. Some of them still believe all those old rumors about me. They’re glad I’m gone.

Other people—not just in Kokomo—can’t seem to get it right. Most of the time you can’t tell who has AIDS and who doesn’t. You never know when you might be next to someone who does. Some people still believe that the AIDS virus is airborne, so they keep thinking they can’t be in the same room with me. They’re totally afraid to sit next to me but they’ll sit next to someone who did. Now that’s just plain stupid—and it hurts!

The point is, you’ve got to try to change people anyway. Lots of times I get the same questions over and over. So I work hard to be patient, I really do. It’s perfectly safe to go to the same school as someone with AIDS, I say. Perfectly safe to kiss them or to go to the same movie theater or drink out of the same water fountain. If I kiss your dog—I might; I like dogs—he won’t give you AIDS. I keep reminding myself that education takes time. Ignorance dies hard. But I guess this is going to take a lot longer than I ever dreamed.

Kids almost always want to know why I didn’t tell a good chunk of people in Kokomo to buzz off. My answer is “Well, lots of times I wanted to say, ‘Don’t you think I have feelings too?’ But I never did. I just ignored what people said.” I could do it because I knew they were just ignorant.

Another question I get a lot is “How does it feel to have AIDS? What are you able to do?” So I say AIDS runs you down. You lose weight and you can’t put it back on. In Africa, where lots of people have AIDS, they call it “the slim disease.” I guess this is why. But I’ve always done everything I can. Always have, always will.

Then I hear, “Are you scared of dying?” You’d think this one would be tough, but it’s not. “At first I was,” I say. That’s the truth. “But now I’m really not, because my mother told me we’re all going to die sometime, so just step up to it.” For some kids, that’s a shock—to hear they’re going to die too. If you’re a teenager and you’re not sick, you never think about dying.

Besides, I say, if you think, Well, I’m never going to make it, then you’re not. I do think I’m going to make it. From the very beginning I’ve said I was going to fight this disease, and I was going to win.

But there’s one place I can’t win. That’s where I am when I get that horrible question, the one they asked me at Boys Town. I was sixteen now, going on seventeen. I was thinking about working in film, or being a TV broadcaster, or working behind the scenes in TV. I sure had experience. My AZT was still doing me good. I felt fine. I thought a lot about girls, and I wanted to date.

I knew it wouldn’t be easy. Mom and I still talk about most everything, even this. Mom said, “It’ll be hard to meet a girl straight on. A lot of parents won’t want you to have anything to do with their daughters.”

As I said, I’m terribly shy. I would never force myself on a girl. I don’t want to get hurt. I’ve just got to hope she loves me that much, because I would really, really like to get married and adopt children. Steve Ford has been a real dad to Andrea and me, so I know you don’t have to be related to a kid to be a perfectly good parent.

But I worry that no one will ever love me enough to be my wife. Then I start wondering if I have the courage to adopt and set up a family all by myself. I can tell that being a single parent has been real hard on Mom sometimes. It gets pretty lonely. You need someone to help you decide what school to send your kids to, or just tell you jokes when things start to get you down. I would love to fall in love—I’m really looking forward to it. But lots of times love songs make me sad. Even Elton’s.

I guess that’s why they call it the blues
Time on my hands
Could be time spent with you

I’m not one to sit around singing, “Why me?” for too long, though. After all, I have a lot to distract me. I do feel very comfortable with girls. I understand their point of view. Comes from hanging out so much with my mother and sister, I guess. I like girls as friends. For one thing, they can help you find out whether the girls you like like
you.
I tease girls a lot and give them a hard time. But I think I’m good at being a friend. I remember birthdays. I don’t let myself get too busy to stay in touch. I make time.

I mentioned that thanks to AIDS, I look very young—much younger than sixteen and a half. I’m only five feet. Andrea’s been taller than I am for two and a half years now. Looking so young can be really obnoxious. Sometimes adults who don’t know me talk to me as if I’m a child. Every now and again, I get stopped in my car because the police think I’m underage. Then I drive up to a McDonald’s window and the takeout person says, “How
old
are you, anyway?” Or I walk into a restaurant and get handed the children’s menu.

I began to feel much better about my height after I started going out to California. There were plenty of celebrities besides Alyssa Milano who weren’t any bigger than I was! And everyone in Hollywood wants to look as young as possible.

Sometimes I think the way I look even helps me with girls. If I were a girl, I might be intimidated by big beefy guys. There are millions of them here in Indiana because everyone is so into sports. A girl certainly doesn’t have to think twice about being scared of me, or worry about whether I’ll put pressure on her.

So I had a lot of dates. I went out with girls who were good friends, and I did things with groups of kids. Around here, you do pretty much the same things whether you’re on a date or just hanging out with a friend or friends. Like I’d go over to Wendy Baker’s house and watch TV or rent a movie and order pizza. She’d always wanted to be a cheerleader, but she wasn’t sure she was pretty enough to try out.

“Sure you are,” I told her. “Go for it.” She did. She made the squad.

“See, I told you so,” I said.

Sometimes Wendy was upset with her boyfriend. She’d tell me about how he didn’t call when he said he would, stuff like that.

“He shouldn’t make promises he can’t keep,” I would tell Wendy. “That’s not right. You should be with somebody who treats you nice.”

“Not everyone is a perfect gentleman like you, Ryan,” Wendy answered. She was smiling, but she sounded a little sad.

“Well, they should be,” I said.

Whenever Wendy was down, I’d call her. “Are you okay? Do you want to do something?”

I’d ask her if she wanted to drive into Castleton with me when I went to pick up my paycheck from John Riser. Afterward we’d go shopping or stop at Chi Chi’s.

“Don’t worry about him, Wendy,” I’d say. “The guy looks like a yak.”

She’d sock me in the arm, but at least she’d start laughing.

Heather and I kind of went back and forth between being best friends and being boyfriend and girlfriend. I mean, we really liked each other a lot, we talked on the phone every day, and we spent a lot of time together—as friends and on dates. I always wanted to take a date when we went to AIDS benefits and public events, so Heather came to just about every one. Whenever she was baby-sitting, I’d go help her, and we’d do our homework together. A lot of the time we went out with a group of kids, including Andrea, so she and Heather got to be good friends too.

But I also liked to flirt. Sometimes Heather would pay me back. I can’t say I enjoyed that. I’d send her notes like, “I was mad and sad to see you with Brad. After Detroit I thought we had something going.”

Detroit was one of the trips Heather and I went on together. We went to New York twice, California twice. This time, Elton had invited Andrea and fourteen of her friends to his concert in Detroit for her fifteenth birthday. Luckily Andrea thought Heather and I both qualified. We got special passes to go backstage and visit Elton in his dressing room. He’s always really excited to see us, and gives out plenty of kisses and hugs.

By that time we were old hands at this kind of thing. Mom, Andrea, Heather, and I had been in Los Angeles for an Athletes and Entertainers for Kids benefit where Elton played and sang. I was a special guest, along with Jason Robertson. He was seven, from Granite City, Illinois, and had gotten AIDS from a blood transfusion. He’d had a hard time in school too.

Ryan flanked by Bernie Taupin and Elton John at the benefit for Athletes and Entertainers for Kids, 1988.

Andrea, Heather, and Ryan live it up at 1988 Athletes and Entertainers for Kids benefit.

This benefit wasn’t the first thing Elton had done to fight AIDS. He was on “That’s What Friends Are For,” the record that raised money for AIDS research. But this
was
going to be the first time he’d sung in a while because he’d had to have throat surgery the year before. You could tell he was all excited about being back on stage.

Elton has a song called “Candle in the Wind,” about Marilyn Monroe. Whenever my family and I are there to hear him, he always dedicates the song to us. Mom cries every time.

“Don’t start,” I tell her. “You’ll get me going.”

I didn’t dare get weepy this time. When Elton started “Candle in the Wind,” he wanted Jason and me up on stage. We sat beside him on the piano bench while he played. The stage was dark except for one light on Elton and us. We didn’t have to do anything—just sit there and listen. Elton turned to smile at us whenever there was a pause in the song. We tried to keep smiling back. It’s a nice, sympathetic song to have a star sing to you. But poor Jason was having a hard time. He kept putting his fingers in his ears. Being that close to the piano music made them hurt badly. I felt for him. Now and again my ears act up if I’m not very well.

When the song was over, Elton hugged us both and walked us off the stage before he went on to the next number. My main memory about the party, though, is that only Andrea was served champagne. When Heather and I held out our glasses, we got carded!

The next day, Matt Frewer took us out to lunch in Marina del Rey. It was the first time we’d met in person. Up ’til then, we’d just been phone friends. He teased me when I wanted Mexican food—“More burritos, please please!”—and he told me that when I walked in all the girls were looking at me and going, “Oooh, it’s Ryan White!”

Ryan in a
Max Headroom
jacket given him by the star of the TV show, Matt Frewer, 1988.