Ryan White - My Own Story (18 page)

“A black Fury,” Laura told me.

“Will you take me for a ride?” I asked her.

“You bet!” Laura grinned. Right then, Laura was the closest I had to a girlfriend. I was beginning to see that the big question when you have AIDS is, “Will anyone ever come close enough to fall in love with me?” I was ready to think about dating. I knew I could get a car, but I wondered whether any girl would ever ride in it with me.

But I pushed those thoughts away. I don’t care who you are or how bad off you are, there’s always somebody out there who’s in worse shape than you are. Like Chad. Like Mark. Like the other kids in the hospital with me. I could have been hooked up to a kidney machine all the time. I could have been paralyzed. I could have had cystic fibrosis. When you have it bad, you can’t breathe, you can’t eat, you can’t run around. You spend more time in the hospital than kids with cancer.

Even though I was sick, at least I got a lot of attention. Andrea was left out a lot, though she’d never let out a peep about it. It’s always tough for you if your brother or sister is sick all the time. Your parents have to spend so much time with the patient instead of with you. If you sulk, you look bad. Everyone feels sorry for the sick one, and tells you to act more grown-up. In the hospital, one of the nurses told me about two boys, five-year-old twins. One had AIDS; the other didn’t. Their parents were working incredibly hard to give both of them enough attention. But the nurse said you could tell the healthy twin was upset anyway.

When Mom had to come to the hospital to be with me, Andrea was always with her, just the way she had been when I was diagnosed. Andrea would sit with Mom and hold her hand. Every now and again, she’d say, “Mom, how’s Ryan doing?” or “Mom, do you want me to get you anything?” But Andrea never complained. Steve really loves Andrea, and he always calls her “a day-in, day-out girl.” Andrea’s very loyal. She doesn’t gossip about people, and she’ll always put in a good word for someone when you start getting catty. She got mad at Mom if she started worrying about me. “Everyone thinks Ryan’s going to die,” Andrea would say. “He’s going to make it.”

But the more I was in the hospital, the more skating practices Andrea had to miss. Skating’s expensive. The skates cost a lot, and you have to keep them repaired. You have to pay for lessons, plus rinks charge you for practice time. When you go to meets, you need money for gas and credit cards to stay in motels. When Mom wasn’t working, we had to count out pennies from our jar in the kitchen to go for milk.

One day Andrea announced in a flat voice, “I’m giving up skating.”

Mom and I looked at her.

“Girls I beat last year place ahead of me now,” Andrea said. “I’m not practicing enough. You don’t have the time to take me, Mom. You don’t have the money.”

“You’re right about that,” Mom said. “I’m sorry, Andrea.”

Before I got AIDS, Andrea had been the famous one in our family. She was a national roller skating champion. Her picture was on the wall at the roller rink, and she’d been covered by newspapers and television. Skating was Andrea’s whole life. Now she’d just be Ryan White’s sister. I’d like to think it’s a treat to be my sister, but right now it wasn’t, especially at school. One time, driving home from a meet, we had laughed about a rink we passed that had a sign out front saying, “Christian Roller Skating.”

“You’re a Christian roller skater, Andrea,” I said. “You’ll fall—and rise again. You’ll make a comeback.” I had decided to switch from law to advertising. It looked like fun. I spent a lot of time thinking up slogans and rhymes.

But I felt for Andrea. As far as she was concerned, our family’s whole life right now was Ryan White, Ryan White, Ryan White. There wasn’t much room left over for her.

W
HILE
I
WAS
in the hospital, Dr. Kleiman tried to get me on AZT, a new drug that seemed to slow down AIDS. It was an experimental drug then, and not every patient could get it. It’s especially hard for children to get an experimental drug. No doctor wants to mess up with them. Now most patients can have AZT. It isn’t a cure for AIDS, and it can have serious side effects. We had some hassles getting it, because it can affect your liver, and I’d already had hepatitis.

But I did get better. I went back home, and studied with a tutor. “They’re calling you the miracle kid,” Mom said with relief. “You always come back. How many parents get their sick children back?”

School didn’t improve much though. On Valentine’s Day the computer department set up a computer dating service. They fed the names of every student into a computer, and gave you the names of your perfect matches. Someone bugged the computer so that I was matched only with boys, and Andrea only with girls.

Then my very worst day at school arrived. Someone broke into my locker and stole a mirror that Mom had bought for me in New York. I had left a bunch of folders in my lockers. Now they had “Faggot” and “Queer” scrawled all over them. Someone had spray-painted “Why don’t you get butt-fucked?” inside the locker too. I’d never even seen that word before.

I was shaken up. What would show up next, a dead cat? I called Mom and told her what had happened.

“You go straight to the principal,” Mom said. “Tell him that if your locker isn’t cleaned up right now, I’m going to call some reporters and get them to come see it.”

Half an hour later my locker looked like new.

Mom was really worried now. She was afraid that if someone else at school came down with AIDS, I’d be blamed. It would be easier than admitting you were gay, or had used needles to take drugs. She’d thought she’d always live in Kokomo, close to Grandma and Grandpa and Tommy and Deb. She’d bought season tickets to the Wildcats’ basketball games for years. But she knew I was desperate to get away.

There were just two problems with moving: We had no money, and no one wanted to buy our house. In Kokomo it was known as “the AIDS house.” But I had been right that our luck was about to change. A company in Los Angeles wanted to make a TV movie about us and about what had happened in Kokomo. Mom had to take a loss on our old house, but the movie people gave us enough money up front for a down payment on a new house in a very quiet little town called Cicero, about an hour south of Kokomo.

Andrea didn’t think Kokomo should be allowed to forget all about us after we were gone. So we got some bee-bees, and we hammered our names into our stoop: JEANNE RYAN ANDREA. As we left for Cicero, we passed a road sign that said, “Leaving Kokomo, City of Firsts.”

“Right,” I said. “I’m never coming back.”

5

I Come Up Grinning: How Life Changed

I
n the end I did go back to Kokomo a few times, but only to see my relatives. I was much happier when they came to see us. If I ever had to mention Kokomo, I talked about “where I lived before.”

Cicero was something different—just a little lake community, maybe 4500 people. More come on vacation in the summer. There’s one central street, and not a lot to do except drive around, visit your friends, and hang out at the Dairy Queen. That was fine with me. All I wanted, I thought, was peace and quiet.

As you come into Cicero, you drive past farmers’ fields and the town cemetery, and then cross a lake with several docks to get to the main street, which has old-fashioned gas lanterns all along it. Our house was a brand-new Cape Codder, right on the lake. The first time we saw our future home, it was only half-built. Andrea and I could pick which of the three bedrooms we wanted. The ones we ended up with were joined by a door, but each room had a separate staircase. So we could walk back and forth and visit each other easily, but feel like we had our own apartments. There was a deck that looked out over the boats on the lake, and from the kitchen window you could see birds and chipmunks and squirrels in the woods out back. When we moved to Cicero in May, I finally had all the shelf space I needed for Herbie’s cage and my G.I. Joe figures and my comics—just as I was beginning to get hooked on other things. Like skateboarding.

I had another year to go before I could get a learner’s permit, so skateboarding was the next best thing to driving. Whenever Mom and I drove into Indianapolis to see Dr. Kleiman—just about once a week right then—we passed through Castleton, a part of the city where all the malls are. It’s the best place around to see movies and shop. One day in Castleton I discovered Maui Surf and Sport, a skateboard shop that carried surfer T-shirts and shorts—the kind I liked from California that you couldn’t find anywhere else around us. John Riser, the owner, was a young, athletic guy who let me grill him about the best wheels and boards. Since I was just starting to skate, he gave me some videotapes to inspire me.

I bought plenty of clothes. When I finally got to California, I wanted to look like I belonged. I also picked up a board, several pairs of Oakleys—mirrored sunglasses in wild colors like orange—and copies of the skateboarding magazines John carried. I read every page of
Skateboarding, Poweredge,
and my favorite,
Thrasher,
which is the best for skateboarders. At least I could study tricks, even if a wall ride was way beyond me. I began to think all I wanted in life was to work for John when I turned sixteen, so I could learn how to be in business for myself. A long time ago in Kokomo I’d started a little company called Odd Jobs, Inc. I was president, and a girl who lived down the street was vice-president. We mowed lawns and cleaned out garages. Now I wanted to see how to really work on my own—and skate around in the mall parking lot during my lunch hour.

I didn’t ride a skateboard much at first. Not because Dr. Kleiman wasn’t happy about a hemophiliac doing that. Not because my best move wasn’t a curb grind or an ollie. The fact is, I was having a bad summer. My lungs put me back in the hospital for a short while, though I turned out not to have pneumonia. That was a big relief. Mom knew the drill by now: She brought me my Alyssa Milano poster for my room, and my own surf shirts and shorts so I wouldn’t have to wear hospital gowns. She sent me a card that said, “Ryan, get well so the mail will slow down.” Moving hadn’t cut back my cards and letters. Some reached me even though they were addressed just “To the Boy With AIDS, Indiana.”

But it’s creepy to be famous because you’re sick. Now and again my mail reminded me about that. Some letters I got made the hair on the back of my neck stand up on end. Like the lists of strange questions I’d get from a man in Oregon. Mostly he wanted to know, “When will my friend Ryan write to me?” Never, buddy! Then there was the man who had seen my picture in
People
and had decided he was my father. This man even hitchhiked to Cicero and called us. He said he was on his way over to live with me and look after me. We let the police station handle that one. I didn’t want to mess with it!

Besides, all the fame in the world wasn’t making me well. I seemed to be tired all the time, even if I slept twenty hours a day. I’m not exaggerating. Laura would come down from intensive care and leave me notes like, “I stopped by twice and you were asleep both times. Don’t you ever do anything else?”

Ryan and Wally, 1986.

I certainly was cold—constantly. If I was outside, I buttoned my jacket up to my chin no matter how warm it was. Once I got home, I always wore jeans and sweaters and furry Big Foot slippers with claws. If I was sitting still, I wrapped myself up in a blanket as well and got Wally and Gizzy to nap on my feet. A friend of Mom’s bought me a portable hand-heater that I carried around with me. Now and then I had to turn Mom’s electric stove all the way up and hold my blue fingers over the hot coil to warm them. Sometimes I burnt them first, and collected a scar or two.

We went to Daytona with my grandparents at spring break, but I had to take my heater along. We stayed in a condo with a balcony looking out over the beach. The weather wasn’t great, so Andrea and I spent hours on the balcony feeding the sea gulls. Someone had written “INDIANA” in huge letters along the sand, like they knew we were coming. Actually, they were celebrating because I.U. had won the National Collegiate Basketball Championship again.