Ryan White - My Own Story (31 page)

I thought it over. Heather had kept in touch, and I felt like enough time had passed. We could be good friends again. So I picked up the phone.

“What are you doing April 28?” I asked.

“Nothing,” Heather said.

I had to pick up some new jeans for California, so Heather and I spent a day shopping. There was nothing in my size, and I got fed up—I wasn’t feeling very well. “Let’s get out of here,” I told Heather. I’d see what I could find in L.A.

When I dropped her off, I said, “Don’t forget. April 28.”

“Don’t worry,” Heather said. She didn’t tell me then that she’d turned down two other dates to go with me.

The week before we left, my throat got very sore and I started running high fevers at night. But they were usually gone in the morning. Dr. Kleiman said I had an infection in my throat, but I could still travel.

I ran a few more errands and took Wendy Baker for burgers at the Dairy Queen in Cicero. It’s right near a four-way stop—the only one in town. Wendy and I always seem to drive up at the same time and spend about ten minutes waving at each other.

“After you!” I yell.

“No, after
you!”
she shouts back.

We have the same game going over lunch tabs. We always talk about school, who likes who, the usual stuff—and then fight over who pays. This time I won.

On the way back to her house, both of us suddenly got real quiet. I don’t know why. We each stayed in our own thoughts until I pulled into her driveway. She hugged me good-bye.

“Just remember,” I said. “You’re buying next time.”

T
HE FIRST THING
I did in L.A. was go on
The Home Show
with Howie Long to tell everyone about the party Athletes and Entertainers was having. In L.A., Oscar night starts very early—like about two in the afternoon. You see people eating in restaurants and driving around in evening dress, even though it’s broad daylight.

But I felt bad, very bad. I had a fever. My throat was the worst I could remember. I had coughing spells that lasted hours. Thanks to my hernia, I could hardly walk.

As we set out to meet President and Mrs. Reagan, Mom said, “I know you don’t feel good. Are you okay? You’re being so pleasant.”

She knows how irritable I can be when I’m sick. I said, “Mom, my chest feels really, really tight. My body just doesn’t feel right.”

I had my picture taken with the Reagans. The President said I was brave and gave me a yo-yo with his signature and a picture of the White House on it. I went back to our hotel and rested for a while. Then Mom, Andrea, and I went to the Oscar party. I had on a new tux shirt that looked like it was splattered with thin streaks of red, yellow, and blue paint. I almost didn’t recognize Andrea. She was wearing a black derby and a short black strapless dress with a full skirt and a big bow on it.

Ryan's last public appearance, March 1990, with Ronald and Nancy Reagan at the Athletes and Entertainers for Kids Academy Award night party.

I had to get up on stage with Kareem and Howie Long. My job was to thank all the volunteers. I hoped they could hear me. I hardly had any voice left, even with the mike.

Then I turned to Howie. “Get me out of here,” I said.

Howie gathered Andrea, Mom, and me up and cleared our way out to a limo. I spent the whole next day asleep.

Mom called some hospitals in L.A., but she had no luck. In a way, I was glad.

“I want to go home and see Dr. Kleiman,” I said.

Mom looked at me. She was scared. I never
want
to see Dr. Kleiman.

“But first—Mom, could you call Elton again?” I had been trying to reach him and Michael. “I want to talk to him real bad.”

“Why?” Mom asked. “Why do you need to talk to him?”

I didn’t say anything.

We caught the first plane we could—an overnight flight that got into Indianapolis at dawn. There were hardly any passengers. The plane was dark and quiet. I could lie flat across the seats, and no one stared at me when I started coughing.

“I love this,” I told Mom. “From now on, we fly at night all the time.”

Dr. Kleiman admitted me to Riley right away.

“I was hoping I wouldn’t see you again so soon, Ryan,” he said.

“Me too,” I said. Hospitals smell like no place else. It’s not a bad smell—disinfectant, bandages, clean stuff. But right then, I felt like that smell had been following me around all my life.

“I’m so tired of fighting this thing,” I added.

I realized I’d never said that before—to Dr. Kleiman or anyone. That night, my first in the hospital, I called Grandma in Florida. I hardly ever talked to her down there.

“I'm in the hospital, Grandma,” I told her. “I don’t feel so good.”

She asked me about Mom and Andrea, about California. I didn’t ask her to come see me—because I knew Uncle Tom, Aunt Deb, and my cousins were on their way to visit her for spring break—but she said she was flying up.

“Grandma,” I said all of a sudden, “remember how we’d go to the beach and Andrea and I used to write our ABC’s in the sand? Right by the waves? The tide would always come in and rub them out. We never did get them right.”

“I remember,” Grandma said. “But those were beautiful ABC’s. You got them right.”

That was just about my last phone call, because I was having so much trouble breathing I had to have an oxygen mask. I felt like Frankenstein—part kid, part machine. But even on oxygen, I could tell I wasn’t getting better. Everything inside me seemed to be breaking down. AIDS was wearing down my liver, my spleen, my kidneys. And fast too. Mom left me for ten minutes to say hello to the Stewarts and the Bakers, who’d come to see us. When she got back, she saw nurses and doctors huddling next to my room. She started running. Dr. Kleiman was having me rushed to intensive care. Mom moved my guardian angel right along with me. Grandma flew up from Florida as soon as she hung up. I was happy that she was coming to see me.

Dr. Kleiman wanted to lay out my situation for Mom and me. “Ryan,” he said, “you’re fighting so hard to breathe that you’re wearing yourself out. The best chance you have is to go on a ventilator. Then the medicine we’re giving you can work.” I had to write notes again. To help you breathe, a ventilator tube has to go in through your nose and mouth and down into your chest. That hurts. “Knock me out to do it or forget it,” I scrawled.

“You’ll be out,” Dr. Kleiman said. “You won’t feel any pain.”

I looked at Mom. She was smiling at me.

“No feet,” I wrote Dr. Kleiman.

“No IVs in your feet,” he agreed.

This was the big one. I knew I might not wake up, but I pushed that thought away. I wrote another note. “Go for it,” it said.

Mom clasped my hands and started the prayer we said every day. “Lord, let everything come out okay . . .” Then she kissed me and said, “Honey, everything’s going to be all right.”

I hoped so. I wanted
her
to be all right. She’d have to watch whatever happened to me. Suddenly I knew from now on, it was going to be much harder to be her than to be me.

I wrote a new note. Just one word: “MOM?”

She smiled some more. She knew what I meant. “Everything’s going to be all right, Ryan,” she said again, softly.

As the drugs took hold, I drifted back to a question some kid asked me once.

“Would you give up all your fame to get rid of AIDS?” he wanted to know.

How dumb can you get! I snapped my fingers at him. “Like that,” I said. “I’d give it up like that.”

EPILOGUE

Ryan’s Final Illness and Funeral

F
or the next week Ryan remained unconscious, in critical condition in the intensive care unit of Riley Hospital. Dr. Kleiman told Jeanne he was sure Ryan was not in pain. But Ryan’s chances of pulling through, he said, were only ten percent.

“And that’s optimistic,” Dr. Kleiman added. “He’s Ryan White. That’s why I said ten percent.”

During the next days Ryan was never alone. Jeanne and Andrea remained with him in the intensive care unit, listening to the pumping of his ventilator and the beep of his heart monitor. Laura Kreich Block, Ryan’s favorite nurse, was working at another hospital, but she volunteered to come back to Riley and help look after Ryan. His grandparents had hurried to Indianapolis right after his phone call, along with his aunt Janet, his uncle Leo and their kids, Uncle Tommy and Aunt Deb and their kids, and his stepfather, Steve Ford. They all arrived too late to talk to Ryan, but they spent many days with him and tried to keep each other strong. His father, Wayne White, came to the hospital several times.

As news of Ryan’s condition spread, thousands of letters, telegrams, and presents from all over the country and the world flooded into the hospital. Every day, the hospital switchboard was jammed with calls, and the lobby was overflowing with reporters covering the front-page story. Former President Reagan and President Bush both publicly praised Ryan. Elton John flew in and told Jeanne, “I’m here to help you.” He brought in bodyguards who stood watch at the intensive care unit. The Reverend Ray Probasco, whom Jeanne had asked to pray with the family at the hospital, noted that the guards were “725 pounds between the two of them.” Jeanne was relieved that now Ryan could feel absolutely safe in the hospital.

One of Elton’s main duties was to keep track of all the phone messages and mail Ryan and his family got. Some schools sent homemade posters lettered with “Hang in there, Ryan!” and covered with kids’ signatures. Jeanne, Andrea, and Elton hung them on the walls of Ryan’s room, along with quilts and pictures from well-wishers. Ryan received so many flowers that his family and friends gave them away to other patients. Elton gave out his own presents to other kids in the intensive care unit, and even sent for a pair of sneakers Jeanne needed.

There was no phone in Ryan’s room, but when Michael Jackson called, Elton and Jeanne asked the hospital for a special hookup. Michael would have two minutes to speak. “Ryan,” Elton said, “you can’t turn down a superstar like this. I’m grade B compared to Michael.” He held the phone to Ryan’s ear so Michael could encourage him.

John Cougar Mellencamp and The Reverend Jesse Jackson came to the hospital to pay their respects. Jill Stewart and Wendy Baker and their parents, along with Heather McNew, Steffonie Garland, Dee Laux, and John Huffman and his mother all spent long days keeping Ryan company. They talked to him as much as they could, reminding him of things they’d done together, of how they wanted to cruise with him again, of how much they loved him. They played his favorite music tapes. Every now and again Ryan’s eyelids flickered. Even though Dr. Kleiman said that Ryan was unaware of his surroundings, some friends felt strongly that he was with them.

“I said things I’d never thought about saying to anyone,” Jill remembered.

“We’re sticking by you, Ryan,” Dee said to him. “Keep trying.”

“Get up—we gotta go to the prom,” Heather told him. “And don’t forget my birthday. You’ve been promising me forever.” Ryan had been too sick in November to take Heather to Ben & Jerry’s. He’d said they’d go when he got back from California.

Jeanne knew how much Ryan always liked to look good, so she had been carefully moussing his hair as he lay in bed. But some of his visitors commented that the boy in the bed “doesn’t look like Ryan.” His medication had discolored his skin and had made his face and body swell. So Jeanne took his yearbook picture, which she had had blown up and framed, and hung it over his bed. There was Ryan smiling and healthy, as she knew he wanted to be remembered.

One evening in the hospital, Jeanne, Elton, Ryan’s grandparents, and Uncle Tommy watched a short TV special on Ryan. At the end of the program, Jeanne saw Ryan say he’d trade his fame for health “like that”—snapping his fingers.

Jeanne laughed. That was so like Ryan. She felt a lift, seeing him looking so well and so sure of himself. Then she looked around at the others and noticed that they were crying. I should be sad, she thought, but I feel proud. He looked so good there.

The following Saturday evening, when Ryan had been unconscious for a week, Elton left the hospital briefly to join Mellencamp and Jesse Jackson at the fourth annual Farm Aid concert. On stage he announced, “This one’s for Ryan,” and began singing “Candle in the Wind.” Andrea and Heather were watching in the wings. As the song ended and the crowd applauded, they waited for Elton, but he rushed past them without saying a word. They knew he had been calling the hospital every fifteen minutes, so Ryan must have gotten worse. They raced back to Riley.

By the time Andrea, Heather, and Elton got back from the concert, Dr. Kleiman was convinced that Ryan would not last much longer. His blood pressure had dropped to dangerously low levels, and was still falling.

At about one o’clock Sunday morning, Michael Jackson called again from Atlantic City. When Jeanne told him Ryan was not expected to live, Michael declared he was flying to Indianapolis right away.

At about two in the morning, a nurse opened Ryan’s eyes and flicked the light switch in his room on and off several times. Jeanne saw that there was no change in Ryan’s eyes. They had stopped dilating. “That’s when I knew,” she said. “He wasn’t going to make it this time.”