Ryan White - My Own Story (30 page)

“I wonder whether she ever really believed at all,” I sniffed.

This year, as usual, I had a long list for Santa.

“You always want more things and
better
things,” Mom complained.

“Christmas isn’t about receiving, Mom,” I kidded her. “It’s about giving.”

At last I left for L.A. in a new leather jacket that I thought looked pretty cool. Michael’s security people met me in a limo. I called Mom from the limo to let her know I had arrived okay. We picked up Michael at his apartment, and then headed south for the ranch. Michael said he thought I looked better than I had on my last visit in June. I hoped he was right. Maybe the jacket helped.

The drive took about three hours. The limo dropped me off at Bungalow Three for a rest. Michael said, “See you at seven.” That was suppertime. I was worried. My stomach ached and I was having cramps. I called Mom.

“I shouldn’t have come,” I told her. “I don’t want to be sick here with Michael.”

“Well, you haven’t eaten in a while,” Mom pointed out. I usually needed at least a snack every couple of hours or so. She said, “Why don’t you see how you feel after supper?”

I took a nap and went up to the main house for supper—chicken, beef ribs, and baked potatoes. Then Michael and I went to his private theater and watched two and a half hours of
Three Stooges
reruns. We ate popcorn from the theater’s own machine, and had pizza delivered from the house. I felt a lot better and had a great time. Now I was glad I had come.

Michael had told me to call the house the next morning when I woke up. Mark, the ranch manager, and his wife did all the cooking. They gave me a list of choices for breakfast and told me, “Anything you want, we’ll fix it.” I picked French toast and bacon. My room was a little chilly, even though I’d brought my heater with me. So they brought me another portable heater and an electric blanket.

“I like your jacket,” Michael told me, “but I want you to have a heavier one.”

Ryan on his way to visit Michael Jackson in California, where Michael bought Ryan a heavier jacket, December 1989.

So the two of us drove to a nearby town in Michael’s Bentley. I can’t name the town, because Michael likes the ranch to stay a private place. We couldn’t find the jacket Michael had in mind, but he did buy four or five dolls for other kids. The best part was, the man in the shop didn’t believe that Michael and his credit card were for real! Michael gave him the ranch’s security number, and he called to clear the card and to doublecheck that Michael was who he said he was.

I was very happy that dinner turned out to be tacos. Afterward I showed Michael a video that Mom, Andrea, and I had made for him of our whole house—every room, every poster and decoration we have on the walls, Andrea’s skating trophies and my collections. In the video, we took him on a guided tour, waving and clowning at the camera.

“When you come to visit now,” I told him, “you’ll know your way around our house.”

That night we watched the new Indiana Jones movie,
The Last Crusade.
How lucky can you get, I thought. The lines were too long to get in at home, but I was getting a private screening.

The next day Michael had business meetings, so Mark took me to pick up a bomber jacket, the heavier one Michael wanted me to have. When Michael was free, we went back to town to pick out some presents for Mom and Andrea. I got Mom a great big Santa, and magic stuff for Andrea. Michael had a video crew come in, and we made a tape together about our friendship—kind of the flip side of the video we had made for him.

At dinner on New Year’s Eve, Michael gave me a wonderful watch. It chimes every hour and has a built-in alarm. It tells you the day of the week, the date, the month, and the year

“Thanks!”
I said.

“I have to leave early tomorrow—before you go,” Michael said. “I’m sorry I won’t be around. And I’m sorry I don’t have the autographed photo you wanted. But I’ll mail it to you.”

When we hugged good-bye, Michael said, “Never give up. Do it for me.”

New Year’s Day: my last day at the ranch. I played with Max, one of Michael’s pet monkeys. I was glad to see him again, and he was glad to see my shoelaces. I puckered up for a kiss, and Max gave me a big one.

I called Mom to tell her I was on my way home.

“There’s a big box at the ranch entrance for me to take home,” I told her. “It’s driving me crazy. What do you think it is?”

It was a whole new stereo system and disc changer. A few days later I got a photo of Michael signed “To Ryan.” He was wearing red, black, and white. Thanks, Michael!

A
FTER NEW YEAR
’
S
I had days when rinsing shampoo out of my hair in the shower left me weak and breathless. I’d have to lean against the tile for a few minutes before I had enough energy to dry myself off and get dressed. Between my swollen stomach and my hernia, I often walked half bent over.

My shingles had cleared up, but now I had open sores on my legs. Mom had to change the bandages every few hours. My throat was very sore and I could hardly breathe in the cold. Because of my hemophilia, I’d get blood clots in my nose, and then I sniffed so much people thought I was making faces at them. Michael had invited me back in the spring. Now that my legs looked so bad, I’d never be able to go out on the public beach in Florida over spring break.

I was having trouble with my liver, so Dr. Kleiman put me on a protein drink. Otherwise, he said, I’d have to have nutrition through an IV. I’d have to stay hooked up for hours every day. I was supposed to mix the protein drink with juice or Sprite. Even so, it tasted sickening. Dr. Kleiman wanted me to have it seven times a day, but I’d only managed to get up to four.

Between coughing and struggling to breathe, I was also having trouble sleeping. When I lay awake, I worried about school. I didn’t know when I’d be going back. When I did, I’d be way behind. But I didn’t have the strength to keep up with assignments at home. I watched TV and buried myself in my car magazines. Sometimes I read car-parts catalogs until three or four in the morning, when I could finally sleep a little.

I had big plans. I spent hours polishing the Mustang Michael had given me. I flew off the handle if the cat walked over it and left dusty prints on the roof. I had gotten tinted windows, but I wanted to customize the whole thing. I spent hours talking to Steve, John, Michael—anyone I knew who cared about cars.

Early one evening I was sitting downstairs watching a
Lucy
rerun I practically knew by heart. Mom came and sat beside me.

“Ryan!” she said. “You’re sitting down here and getting old along with Lucy.”

I didn’t say anything. Lately I didn’t want to talk about much except cars. They weren’t Mom’s favorite subject.

“Ryan,” she said, “what’s happening to you? All you ever talk about is
things.
You have a terrific car. You have a great stereo. You’ve been given so much, but you just go on and on about how much more you want.”

I stayed quiet for a while. At first I wasn’t quite sure what to say—or how much.

“Mom,” I said finally, “you don’t understand. I don’t have much time. I don’t want to miss out. There are still so many things I want.”

Mom didn’t say anything. She knew wanting things kept me going. But she knew there was more to it. She was right.

“I’m scared,” I said.

Ryan and Jeanne at home, 1990.

For the last five years I’d been so strong. I’d have to go into the hospital, things would look bad, but then I’d be out again and I’d be fine. Now I’d been sick since September—the longest ever—with all these chronic problems I couldn’t get rid of, like my hernia and my liver. Every week I seemed to have something new, like those sores on my legs. My body felt like it was rotting away.

“All I do is think about dying,” I told Mom. “Reading another car book, pricing a new car—those are the only things that get my mind off it.

“I can’t sleep because I’m scared I might not wake up,” I said. “It’s never been like this before. I don’t want to go without saying good-bye.”

“Remember your guardian angel,” Mom answered. “You always have your night-light, and you always have your angel watching over you.”

Mom knew I wanted to be buried in the Cicero cemetery. She knew I wanted the Reverend Ray Probasco to conduct my funeral. He had known us in Kokomo and he had visited me in the hospital when I was diagnosed. But Mom and I had never discussed the really important stuff: What I should wear.

“I’d like to see you in your prom tux,” Mom said quietly. “You and Dee looked so great that night.”

“No, Mom,” I said firmly. “I want to look like me. I want to wear my Guess? jeans, a surf shirt, boxer shorts”—I wanted to be comfortable—“my Air Jordans, and my Oakleys. And the watch Michael gave me.”

After that I felt better. I guess just saying I was that scared helped. Plus I always feel better if I make plans. I started looking ahead again. In February Dr. Kleiman said I could go back to school, and we had another trip coming—to California and Florida. Two weeks of warmth! First, Athletes and Entertainers for Kids wanted me to give an award to former President Reagan at a special party on the night of the Academy Awards in L.A. He’d made a public service announcement about AIDS, and he’d sent me a couple of nice letters from the White House, so I wanted to meet him. And the party would be good for the cause. Then we were going to Miami for spring break. A kind man who owned a broadcasting company sent us plane tickets and put us up at his hotel. I wasn’t quite so bloated anymore. I’d look okay in a bathing suit.

My junior prom was coming up April 28. I planned to be there. One Friday night Steffonie came to visit Andrea and me and watch TV with us. She ended up sleeping over, and the next morning I lent her a shirt and a pair of overalls. She was just my size.

We sat on the couch in the living room and leafed through an album of photos of our trip to California last summer, including the one and only shot of Michael and me. Steffonie told me about a class project she was working on, designing a dream house. She showed me some floor plans she’d drawn. She had had to decide which rooms went where. She’d picked out colored swatches of rugs and curtain fabric and glued them to her sketches.

“Now here’s the sauna,” she pointed. “And here’s the wet bar.”

I wouldn’t mind living here at all! “This’ll be our house,” I told her. “Here’s our kitchen. Here’s our living room. We’ll put the couch here, so we can sit like we are now.”

Steffonie laughed.

“How would you like to go to the prom with me?” I asked.

She smiled and looked at her sneakers.

“If I went with anyone, it would be you,” she said. But she was only fifteen and her parents wouldn’t like it. They thought she was too young to date.

Ryan with Steffonie Garland, February 1990.

I wondered whether that was the real reason why they wouldn’t like it, but I didn’t say anything.

That was a letdown. I let the prom drop for a while after that. Finally a couple of weeks before we were going to California, Mom said, “Why don’t you ask Heather? If you don’t, she’ll probably ask you.”