Ryan White - My Own Story (11 page)

The man from Arizona insisted that I had to take a teaspoonful a day. He was determined. I had to start right now and take it in front of him immediately. He said he’d take a dose first, if I wanted, to show me it was safe—and he did! But he still wouldn’t tell us what was in it. Furthermore we had to swear that we wouldn’t tell anyone else about his medicine, or have it analyzed. I guess he was worried that we were going to swipe his top-secret formula, make some more of our own, and sell it to every drugstore we could find.

Since Mom didn’t want either one of us to expire in front of her right then and there, she persuaded the so-called scientist that I’d take my teaspoon later. Much later. We got him on the road to Russiaville. Naturally, he called back that night, wanting to know if I’d taken his medicine. Mom can’t tell a lie, so she told him no. He got really mad, and said he wanted his shampoo bottle back. He showed up the next day to reclaim it and then stormed off toward Arizona. I guess we seemed ungrateful and unappreciative of all he could have done for us.

So Andrea didn’t have to envy me about most of my mail. But I admit I did get some nice letters and presents. Some girls enclosed their pictures in scented pink or lavendar envelopes. “Well, hello!” I said, when I opened these. “A date for the movies!” I even got some good letters from other teenage hemophiliacs with AIDS. They didn’t always come right out and say they had AIDS, but somehow you could tell it was there, between the lines. One boy wrote me, “How old’s your sister? Mine is three years and a
pest.”

Many entertainers and sports stars and other celebrities make a point of writing to sick kids to cheer them up. I got autographed baseballs from the Cubs and the Dodgers, an autographed football from the Chicago Bears, and autographed photos from Ronnie Milsap, the country singer, and David Hasselhoff, the star of the television show,
Knight Rider.
He even came to see me. Mom and Grandma were thrilled that I’d heard from stars, and their photos looked great on my bedroom walls. I was more excited when one of my buddies from the neighborhood or from school dropped by in between the preachers.

Mom finally decided that since so much else had gone wrong, she couldn’t deny me my own dog, even if Dr. Kleiman yelled at her. On Valentine’s Day Mom’s friend Mike from the plant came over with—you guessed it—a litter of five puppies. They were mutts—“Heinz 57 Varieties,” Mom called them—but who cared? They were all adorable and affectionate. I was so happy Mom had changed her mind that I gave her a giant hug. Then I hugged each pup. They wiggled and bounced all over me, licking and scratching. I had trouble choosing, but finally I settled on a brown one with a pug nose and uneven black and white patches. Since I was watching so much TV, I had a name all picked out for him: Barney, after Barney Fife on
The Andy Griffith Show.
And just like I’d hoped, my Barney wouldn’t let anyone but me feed him or walk him. Best of all, if other people tried to pet him, including Mom and Andrea, he growled at them.

Mom was certainly my main Valentine, but I wanted to surprise Laura too. Mom took me by the hospital and I presented Laura with a red plastic rose on a long stem that had a light inside the petals. If you put it in a vase, like you would a real flower, it made a reddish glow on the wall and looked real romantic. Laura was very happy to see me well enough to be up and out. I invited her to come by and meet Barney, and to watch Andrea skate, and she said she’d be there.

Over Andrea’s spring break, Mom took the two of us south to visit Aunt Janet. I’d finally gotten over my thrush, and I was coughing less in the warm weather. While we were in Birmingham, my diarrhea stopped too. My whole family celebrated! I was a medical miracle!

My cousins showed us a new playground in Birmingham where you could swing yourself on a long rope out over what looked like a gaping ravine. Mom took some home movies, and my grandparents were so pleased to see me back in action that they almost forgot to fuss.

By the time we came home, I was feeling the best I’d been in two years. Some nights Steve took all of us to the rink together, and Mom was able to start driving Andrea to skating practice again. One day they stopped on the way at a drive-in restaurant to pick up Cokes. While they were sitting in the car waiting for their order, Mom remembered something. She turned to Andrea and said, “You know my plan? The one I had in the hospital? To shut ourselves in the garage with the car motor running? Just forget I ever said it.”

Andrea replied, “What plan, Mom? I don’t know what you’re talking about.” They grinned at each other.

“Thanks, hon,” Mom said.

I
WAS
well enough to get a paper route, and to play with my friends across the street once they got home from school. Some idiot asked Blair if he was scared to hang out with me. Blair knew he was not supposed to touch me now if I started bleeding, but that had never happened, even before I had AIDS. He had a snappy comeback.

“Ry-man?” Blair said. “It’s not like he has a green aura around him.”

Back then I assumed the kid Blair had talked to was the exception. I was sure that my friends at school wouldn’t act like that. I really missed them. Most of the day I was home on my own. Now that I felt well, Mom had gone back to work. I was very, very bored. All I did was watch reruns
—Andy Griffith, Lucy,
whatever was on. I wanted to be able to get up every morning and pick out what I wanted to wear to school. I wanted to pack my books in my backpack and study math and history and science again. I began to bug Mom to call school and find out when I could go back, or at least visit and have pizza with my buddies in the cafeteria. I took up the art of note writing again: “Mom, call school. Want to go back. LOVE (capitalized, circled, and underlined), Ryan.” Sometimes I’d sneak these notes into Mom’s pockets, and she’d find them later at work.

One day she found a note from me at the bottom of her handbag and showed it to a friend on the job. “Jeanne,” her friend said, slowly, “you don’t
really
think they’ll let him go back, do you?”

Mom didn’t know what to say. This was a good friend talking. Mom had expected everyone to treat me the way she had. This was the first time she realized we were in for a lot of trouble.

Soon it started happening in the oddest places. Our church has always been real important to Grandma. She goes to services regularly, and she tries to do as much church work as she can. The first time Mom and Andrea and I started going to Sunday service again with my grandparents, once the weather warmed up and I was strong enough to be outdoors, a good old friend of Mom’s, someone she’s known since grade school who sings in our church choir, was sitting in the front pew. Alice saw us walk in together, and she came all the way down the aisle with a beautiful smile on her face to greet us. She gave Mom a long hug. “Alice looked like an angel to me right then!” Mom told me afterward.

But as the service got started, we could tell that the rest of the congregation wasn’t quite so glad to see us. Every time I coughed—I never did stop coughing, ever—people turned around to see how close I was to them. During the sermon I had to go to the bathroom, and I could feel dozens of pairs of eyes following me. All the parishioners seemed to be whispering to each other, “Did you see where he went? What’s he going to do now? Better watch him!” No one would use the bathroom after me. On the way out of church, people shooed their kids away from us. The next Sunday we were asked to sit either in the very first pew or the last one, so everyone would know where we were at all times.

It’s hard to say your prayers when everyone else in church seems to be watching you out of the corner of their eye. But Grandma liked having us go to Sunday service with her and Grandpa; she thought I needed church. “They’ll get used to you,” she said. “Just give them a little time.”

The next weird event was that before school was let out for the summer, my friend Chris Sadler got in big trouble over me. Some kid had come up to Chris in the hall and said, “Hey, have you heard this one? What kind of bread do fags eat? Ryan White bread.” Chris hauled off and slugged the kid. The principal expelled Chris for three days. But his mother told Mom, “That kid deserved what he got. He knew Chris was Ryan’s friend. I’m kind of proud of Chris.”

I couldn’t believe that these people at church and school considered themselves intelligent. Dr. Kleiman and a lot of other experts had said you couldn’t catch AIDS from being around someone who has it. You can’t get it from a doorknob or a toilet seat. If you could, how come Andrea and Mom had tested negative and were still well? And how could anyone who was paying attention decide that I had AIDS because I was gay? There were other hemophiliacs in Kokomo, and some of them must have gotten AIDS the same way I had. Didn’t people in Kokomo have any common sense?

One day in late July Mom arrived home from work and told me that she’d talked to Western. “They don’t want you back, Ryan,” she said. “Even for a visit. They’re afraid you’ll infect the other kids.”

“But that’s impossible, Mom!” I shouted. It was bad enough that I had to start seventh grade all over again. Now I was being expelled for no reason.

“I know,” Mom said. “But they’re scared. Remember last fall when you had a nosebleed because your locker door flew open and bumped your nose? Mr. Colby, the principal, and the school nurse looked after you. They were so scared they both got tested for AIDS. They say they need guidelines from the State Board of Health for handling kids with AIDS in case something like your nosebleed happens again. They don’t have any.”

“They’re dumber than a box of rocks,” I yelled. “This is crazy! I can ride my bike, I can do my paper route, I can go to the movies. I can do everything! I
like
being at school. I don’t want to stay home alone—I want to be with my friends, just like everybody else.”

“I’m not sure I know how to fight this, Ryan,” Mom said. “I’m afraid I couldn’t handle it. I never know what to say in public.”

“We
have
to fight, Mom,” I said. “If we don’t, we won’t be allowed to go anywhere or do anything. What they want to do isn’t right. We can’t let it happen to anybody else.”

A couple of days later, while Mom was still trying to figure out what to do next, something we never, ever expected happened. A local station, which had been working on a story about me as an example of an AIDS patient who was doing well, found out that Western didn’t want me back. When Mom got home from work that night, there was a TV truck parked in front of the house, and a bunch of reporters at our front door.

So I ended up on the national news the next morning, the first kid with AIDS to protest publicly about being barred from school. It felt good to get the word out. “I understand why the school is scared,” I told everyone out there, “but they should just listen to the facts.” Some of the reporters wanted me to talk a whole lot longer, but I said no. Mom’s insurance had replaced my computer that was stolen at Christmas and I was busy trying to get it to talk to Blair’s computer across the street.

Since I wouldn’t say much, the reporters interviewed Blair and Heath and Chris too. Chris told me that his family taped the TV report he was on. “I’ve watched it maybe two hundred times,” he told me.

Not me. Mom tapes me every time I’m on TV, but I can’t stand to watch myself. I put my hands over my eyes or my fingers in my ears. I think I look and sound like an even bigger jerk than I am, and it gives me the creeps. The one time I was happy about being on television was when we noticed afterward that I had been wearing a T-shirt that said, “Don’t Die Wondering.” I don’t know about the TV station, but
we
thought that was hilarious.

At least life wasn’t quite so boring. In fact it got hectic, very hectic, and stayed that way. The next day Indiana’s health commissioner, Dr. Myers, called Western and said if I wasn’t sick, I belonged in school. Then he asked Mom and me to come with him to a press conference where he was going to announce guidelines for schools that had students with AIDS. At a press conference you have to stand at a microphone in front of a big crowd of reporters and they get to ask you questions. Usually the press conference doesn’t last very long. This is just as well. If there are TV cameras there, you really want the whole thing over with fast. The lights shining in your eyes can give you a bad headache inside of two minutes.

This time most of the reporters wanted to bother Dr. Myers. But a couple of them asked me, “How do you feel about not being allowed back in school?” Press people always want to know how you feel. “I’m pretty upset about it,” I told them. “I’ll miss my friends, mostly.”

You’d think I had declared war. The new state guidelines didn’t stop the Western school board from voting the very next day to keep me out. Then about fifty teachers came back from vacation early to take a special vote to refuse to teach me. One mother, Mitzi Johnson, whose older daughter was only in the first grade, not even in junior high with me, started going around with a petition, collecting signatures from parents who supported the school’s stand. “We have to protect our children,” she was saying.

Mom wasn’t sure it would be good for me at all to go back to school. She was already worried I’d be exposed to some illness, and now everyone was being so unfriendly. I told her I didn’t care; I could ignore them. I had my own friends. So she called Mr. Vaughan, and he filed another suit for us to get the school board to readmit me. Mom and I went to court with Mr. Vaughan, and listened while he told the judge that Western was discriminating against a handicapped child, meaning me. But the judge wouldn’t discuss whether I was healthy enough to go to school. He said that he couldn’t make a decision because we hadn’t done things right. We had to present proof that the school was discriminating against me before he would allow us to come back to court.

“But, Your Honor,” Mr. Vaughan shot back, “Western has already decided they don’t want my client. A hearing will take up valuable time. Time is running out for this young man.” I knew he didn’t just mean that school was about to start. He was talking about the fact that I might die.