Ryan White - My Own Story (9 page)

On Christmas morning—it
was
a white Christmas—Mom was eating breakfast in the hospital cafeteria when she was paged. My grandma was on the line, frantic.

“Jeanne, this is terrible! I dropped by your house to get your gifts—and you’ve been robbed. Christmas is gone. They took all your presents and your VCR and your videotapes of Andrea skating at the nationals.”

Mom felt numb. She’d worked hard to make this Christmas as perfect as possible—and now she didn’t even have any presents for us. The culprits must have been some neighbors whom she suspected were into drugs.

“I’ll just have to try to explain things to the kids,” she sighed to Grandma. In Mom’s bedroom Grandma had uncovered some stocking stuffers that the burglars had overlooked. At least Andrea and I would have a few small presents.

Poor Andrea was devastated. No presents was bad enough, but her skating tapes couldn’t be replaced. Now she would never be able to show anyone what she’d done to win at the nationals.

Mom found me listening to tapes on my new cassette player. When she told me what had happened, my stomach dropped. The thought of Christmas had kept me going. Without the tons of presents we always got from Mom, today wouldn’t be like Christmas at all. I didn’t want to talk about who might have robbed us or why or what the cops could do—it was too depressing to wonder who had my computer now. All I said to Mom was, “Let’s forget about it.” I tried to think of our burglary as that book,
How the Grinch Stole Christmas
, come to life.

The story of what had happened to us got around the hospital. My neighbor in the next room was a five-year-old girl named Jennifer. Jennifer had Reye’s Syndrome, a disease that makes your brain cells swell so there’s terrible pressure inside your skull. She was one of the other children who helped me remember that I could be in much worse shape. Most of the other kids had been allowed to go home for Christmas, but Jennifer and I were stuck.

My grandparents arrived with Uncle Tommy and Aunt Deb and my cousin Monica and her brothers. Tommy and Deb and their kids were like Grandma and Grandpa: They stood by us no matter what. Everyone jammed into my room with Mom and Andrea, and sat on my bed and even the windowsill, handing out cards and presents. With all the packages my relatives had brought, I hardly noticed that anything was missing—though a computer certainly would have been nice. I liked math and science, and really wanted to learn to use a computer. It would be a big help with homework.

Even Dad dropped by with some Izod shirts for me. Mom had put them in layaway and had asked Dad to pick them up for her. I appreciated that present: I always liked to wear my own shirts in the hospital, and now I had some new ones to put on when I left for home.

All of a sudden Jennifer’s relatives walked in carrying several big brown grocery bags. They’d found a drugstore that was open on Christmas, and they’d bought Andrea and me a bunch of little presents: a metal model car that ran on remote control, Care Bears, comic books (yay!), a miniature basketball game, a set of oil paints. Nothing was wrapped, but who cared? Even Andrea began to cheer up. She and Mom and I even got little extras from the hospital staff. It was a pretty great Christmas, after all.

We never did get any of our presents back, even though we found footprints in the snow leading from our house to the druggy neighbors’, and Andrea saw their little girl wearing my jeans and carrying a Cabbage Patch doll Mom had bought me! You know those dolls are only one of a kind, so there was no mistake. Still, the police claimed they couldn’t arrest anyone. The worst part was the robbers knew I was in the hospital with AIDS. Word was racing around our neighborhood and our Methodist church in Kokomo.

The day after Christmas Mom arrived with Andrea and a surprise visitor, our minister. Mom had been struggling to get her courage up all week. She could see I looked pretty good—nothing like a few presents to perk me up—so she decided the time had come.

“Ryan, you know you’ve been real sick,” she started out. She was surprised at how calm she sounded.

“Uh huh,” I said. “What’s the matter?”

“They’ve done a lot of tests on you,” Mom went on.

“Yeah,” I said. “So?” What
was
all this?

“Ryan,” Mom said, still very calm, “you have AIDS.”

I stared at her. Everything, everyone seemed frozen still. All I could think was, Laura. What about Laura? Did she know she’d been looking after someone with AIDS? Would she stay away from me now?

“Does Laura know?” I asked. I didn’t realize Laura was listening in on the nurses’ intercom and trying not to cry.

“Yes,” Mom assured me. “Laura knows.”

Whew. If she’d known all along, she’d probably stick around. I
would
get to see her again.

The other giant worry I had was whether having AIDS meant I’d have to spend the rest of my life flat on my back in a hospital bed.

“Am I going to get out of here?” I wanted to know.

“As soon as Dr. Kleiman says so, you can come home,” Mom said. “You’re getting over your pneumonia.”

That left only one question. I took a deep breath.

“Am I going to die?” My voice came out steady, not squeaky. That was some relief.

“We’re all going to die someday,” Mom answered, just as steadily. “We just don’t know when.”

I thought a minute. So what was the big deal about AIDS? I was a hemophiliac, so I already had my limits. But I’d been having an okay time, anyway. I certainly wasn’t about to die yet. Why not just get back to being a normal kid?

“Tell you what, Mom,” I said. “Let’s just pretend I don’t have AIDS.”

“Ryan, we can’t,” Mom protested. “We’re going to have to take precautions, make sure you don’t get any sicker.”

“Mom, you don’t understand!” Andrea came to my rescue. “You don’t see what Ryan means.”

“I just don’t want everybody feeling sorry for me and thinking ‘Poor little Ryan, he’s dying.’ I just want to make believe I don’t have AIDS and do what I want to do. Like, I want a dog.”

“Dr. Kleiman says we shouldn’t have any animals,” Mom said.

No way I was going to give away Herbie, my hamster. Herbie lived in my room at home, and I missed him every day.

“I want my own dog, Mom. I don’t care if he takes six months off my life. I want that dog to like only me. Nobody else feeds him—nobody else has anything to do with him. I just want him to come to me.”

I think our minister was afraid Mom and I were getting into a fight. “Ryan, can we all say a prayer together?” he broke in.

“Sure,” I said. I listened to the others with half an ear, adding my own prayer for a pup. And just the way I always did, I said thank you to God for another day of life, and asked for one more. Lord, please let me live—go back to school, see my friends again.

T
HE DAYS
dragged on by, the way the days after Christmas tend to do, especially when you’re in the hospital. I began to find out what having AIDS and a weakened immune system really means. Some people are HIV positive. When they are tested to see if they are infected with the AIDS virus, they test positive. But they have no symptoms yet. Some people have mild symptoms. Sometimes doctors say they have ARC, or AIDS related complex. But some people have many symptoms. They have full-blown AIDS. I was one of them.

When you have full-blown AIDS, you don’t pick up every cold and flu that other people have. AIDS doesn’t seem to work that way. It’s as though your immune system is going up and down. When it’s weak, you can catch certain odd illnesses that don’t bother most other folks. For instance, I still had chronic diarrhea—ever since the summer. Dr. Kleiman said I got it from a parasite that your digestive tract usually kills off for you—unless you have AIDS. Same with my pneumonia—it was a very unusual kind that mostly hits AIDS patients. If you come down with pneumocystis pneumonia, it’s a very big clue that you have AIDS too.

Just as my pneumonia was beginning to clear up, I got thrush. It means you have a yeast infection—that’s the kind of organism that makes bread rise. But inside your body, yeast is not so pleasant. I developed funny-tasting white patches inside my mouth and had to rinse with some truly vile liquid medication to prevent it from spreading. I was supposed to swallow the stuff, but I also had herpes in my throat, which made it incredibly sore—far worse than any normal sore throat. I didn’t want to swallow a thing.

Anyhow, AIDS takes away your appetite. It does weird things to your sense of taste and smell. Even your favorite foods smell repulsive—or your first mouthful will taste fine, and then your next one is like eating paste. Mostly I lived on sodas.

I’ve always been a real picky eater—long before AIDS. Don’t come near me with a lukewarm Coke, or one that’s been sitting open in the refrigerator for half a day. Because Riley treats only kids, they’re used to hard cases like me—or even worse. They’ll literally try anything to get a sick kid to eat. They’ll let you cook your own food, or if you won’t touch anything but Frosted Flakes or hot dogs, you can get them, three times a day.

I wasn’t that extreme, but still, there were days when my mouth and throat were simply too sore, or when I just didn’t feel like eating. Sometimes I couldn’t sit up, so I’d use that as an excuse. Then Laura would tell me, “You act like a kid—I’m going to treat you like a kid. Choo, choo—here comes the train!”—and she’d zoom a spoonful of vegetables into my mouth. Sometimes I’d manage to duck in time—and then there’d be peas all over my bed.

Laura never talked to me about dying. She figured Dr. Kleiman’s job was to keep me up-to-date about life-and-death medical matters. Hers was mainly to give me as good a time as possible. She always volunteered to be assigned to me, and after word got around the hospital about what was wrong with me, that was important. AIDS was so new that even some people who worked in medicine were nervous. Some nurses found excuses to avoid caring for me: They said they had colds and didn’t want to infect me. Some just asked for other assignments. But others weren’t so subtle. Mom overhead one nurse telling a doctor, “I don’t want to go near him, and I don’t see why I have to.”

Much as I hated having my finger stuck for a blood sample, I always tried to help the nurses by sitting very still, breathing deep and slow to stay calm. I’d ask them to say, “One, two, three—stick!” so I could get ready. Sometimes you can be so afraid of being stuck that all the veins in your arm disappear completely! When that happens, the nurse’s job is much harder and the whole awful process takes ten times longer. The nurse or technician would tell me, “I don’t want to hurt you.”

Since I knew perfectly well they were going to, I just said, “Don’t worry about it.”

I wondered if they were really saying that they were worried about getting hurt themselves. Much later I found out that one nurse who had been drawing my blood had stuck herself with the same needle right afterward. She was just about to get married, so she asked her fiancé if he wanted to call off the wedding. He didn’t; she got tested for AIDS, and her test was negative. If you’ve been infected, you’ll test positive within three months, though you may not show any symptoms for up to eight years.

Once I asked Laura why
she
wasn’t scared of me.

“About the only precaution I have to take with an AIDS patient is to wear rubber gloves when I might touch your blood,” Laura told me. “That’s in case I have any cuts on my hands. Besides, I think my job is to treat
every
patient like they’re an AIDS patient. If I do my job like I’m supposed to—wear gloves when I should, scrub down, and wash up well—then I don’t have to be scared. If I’m not scared, then my hands won’t shake when I draw your blood. That’s how things can go wrong and you could stab yourself with an infected needle.”

Sometimes the hospital staff wanted to stay away from me—not because of AIDS, but because I was ornery. When you’re really sick, you often don’t realize you’re being crabby. My uncle Tommy found out about this when he had bad cancer for a while. One day my aunt Janet called him from Birmingham and started chatting about how the last I.U. basketball game had gone. Uncle Tommy, who’s unbelievably patient—you know he has to be because he lives with my cousins—just about took her head off over the phone.

“You’re being
ridiculous
,” he insisted to Janet. “The game wasn’t like that
at all.”

Janet was taken aback. Tommy’s always so mild-mannered. “Well, Tommy,” she said finally, “if I’d known you felt so strongly, I wouldn’t have said anything.”

Then Tommy could hear how he’d sounded to her, and he apologized. After that he always knew that lots of times I couldn’t hear how I talked to people, either. Laura understood that too, but she never let me get away with bad behavior.

Sometimes I was scared and upset, and it came out in tears. I never cried in front of anyone at Riley—not even Dr. Kleiman or Laura—only when I was with Mom. Other times I didn’t cry; I got mad. Once Laura happened to walk in while I was being really mean to Mom, who was visiting with Andrea.

“Ryan,” Laura said firmly, “we don’t cuss in here. You’re not going to talk to your mom like that in front of me.”

“I’m sorry, Mom,” I said. “I love you.” Whenever we had a fight, I told her that right afterward and kissed her. “I’m sorry, Laura. I didn’t mean it.”

Just then I felt a wriggling under my blanket. I remembered I might be in
real
trouble with Laura. Herbie, my hamster, poked his head out and then the rest of him. He started climbing up and down my legs and all over my bed. Good old Andrea had smuggled him into the hospital in a doll’s suitcase. He seemed just as excited to see me as I was to see him.

Laura looked at Herbie for a minute, and then started smiling up one side of her face. “You better not let Dr. Kleiman see him,” she told me. “I’m not getting into trouble on this one.”

Still, she must have gotten a kick out of Herbie’s visit, because she told all the other nurses about him. Several of them dropped by and asked to be introduced. I wasn’t expelled from Riley after all.

Mom didn’t say much when I had my outbursts. She knew what was really bothering me. Sometimes I got so I just told her flat out, “Mom, I’m scared.”