Ryan White - My Own Story (10 page)

“I know,” Mom said. “I’m scared too, but we can’t dwell on it.”

When I was diagnosed, the hospital had suggested family counseling, but Mom and I figured we had each other to talk to. Andrea was like me: She didn’t think I was really going to die. Besides, I didn’t want to
talk
about AIDS; I just wanted to get on with the rest of my life.

This may sound hard to believe, but after a while, things changed and I really, truly wasn’t scared of dying. A big reason was that one night in the hospital, when I was off the respirator but still very sick, I had an amazing dream. I thought I was making my way through blackness. The devil was all around, trying to pull me into his house of hell. But I just kept straining and reaching and pulling away from him—when suddenly I saw a blaze of the brightest light you can imagine. God was there. He spoke to me. He said I had nothing to worry about. He was going to take care of me.

The next day when Mom came to see me, I told her about it. She said she’d heard other sick people say that they’d had a dream like mine. Suddenly I knew what I’d dreamt about.

“Mom,” I said, “I’ve seen heaven. I’m not afraid now.”

“What did God look like?” Mom asked me.

I thought for a moment. “Well,” I said slowly, “He sure didn’t look like that person in the picture I have on my bedroom wall.” I meant Jesus with long hair and a beard.

T
HERE WAS
another reason I wasn’t afraid: I
was
getting better. Hemophilia had taught me I was always going to have to go for it—to concentrate on all the things I wanted to do. Mom had taught me to look for the happy parts of life, and to look away from the bad parts. If I had started dwelling on all the bad stuff connected with hemophilia, I’d never have left the hospital at all. I didn’t want to
have
AIDS. I wanted to
fight
it. I wasn’t going to be an AIDS
victim.
No one was going to make any kind of victim out of me.

When I got to high school, I learned in psychology class about voodoo, how if you believe in it, it will work on you and for you. If you think zombies and hexes and spirits are dumb, voodoo won’t work. I didn’t know about this when I was lying in the hospital, hearing for the first time that I had AIDS, but somehow I figured out that if you believe you’re going to get better, you will. If you sit around moping and thinking, “I’m not going to make it,” then you won’t.

So I had made up my mind. I’d been told I’d never ride a bike. Now I rode a bike
and
roller skates. When I broke my elbow, I was told I’d never be able to reach my shoulder again. A month after my cast was taken off, I could do that. I’d fallen out of my crib—and once I even went through a plate glass window at Grandma’s, hands first—and I didn’t bleed at all.

I had plans, and I wasn’t about to drop them. I wanted to go to high school with all my friends. I wanted to graduate and go to Indiana University. Even though I didn’t know what my major was going to be yet, I meant to make something of myself. Besides that, being a teenager was supposed to be fun, and I meant to have some. I certainly intended to learn to drive.

“Sure you can lead a normal life,” Dr. Kleiman told me. “There are a few things I want you to stay away from, like cigarettes and bird droppings and animals. Don’t swim in rivers or lakes.”

I didn’t say anything. I wasn’t about to give up my plan to get my own dog. Part of being a teenager was trying cigarettes. Well, I thought, I’ll stay away from
other people’s
cigarettes. There were some things Dr. Kleiman just couldn’t know.

“How long do you think I have?” I asked.

“I don’t know, Ryan,” he said. “Besides, if I told you something like, ‘Until April,’ and then you were still alive in April, you’d never believe another word I said, would you?”

I had to say, “No, I guess not.” Then I thought of something. “Dr. Kleiman, they’re working hard to find a cure for AIDS, aren’t they?”

“Yes, they certainly are,” Dr. Kleiman answered.

“Well,” I said, “I’d like to tell them to hurry up.” Grandpa and I had read that people with AIDS were lucky to live two years after their diagnosis. I wanted to be the one they found the cure for in time.

“I bet if I live five years,” I went on, “I can beat this thing.” I grinned at my doctor. “Or I’ll die trying.”

3

How I Tried to Go Back to School

F
ebruary had almost arrived when Dr. Kleiman finally let me go home again. Mom had left up our two Christmas trees and all our other decorations. I was pretty feeble, too weak to go out in the cold or do much besides watch TV. I still had thrush, and my diarrhea and my coughing didn’t seem like they’d ever go away. All I could do was let time go by until I felt stronger.

“We will get through this,” Mom would tell me. “We’re not going to live in misery. Every day is going to be the best.”

But it was beginning to dawn on me that AIDS was going to be harder to live with than hemophilia. Sometimes I felt scared, just the way I had in the hospital. Most often I was afraid I’d never feel well again. Then I’d just sit with Mom. She’d put her arm around me or rub my head, and we’d talk.

Mom claimed I looked like a concentration camp inmate: just skin and bone. I’d dropped almost twenty pounds, and I’m not chubby normally. But I did have all my hair, thank you very much. Dr. Kleiman had told Mom that whatever she could get me to eat was okay with him. Mom and Andrea prefer salads and cottage cheese and light food that keeps weight off you. But I might go all day without feeling hungry, and then start craving pork chops, French fries, hot chocolate, and anything else in sight. Grandma started working nights so she could cook for me during the day while Mom was at the plant. She and Mom would drop whatever they were doing and cook whatever I wanted whenever I was willing to eat. Some days I wanted four or five small meals, a couple of them late at night.

Once a month, Mom had to take me back to the hospital in Kokomo for gamma globulin therapy. That’s a dose of concentrated antibodies that helps kids with AIDS resist infection. And I had to go see Dr. Kleiman to snort pentamidine in an aerosol spray.

“Why can’t I do this at home?” I asked him.

“Because then I’ll never get you in here,” Dr. Kleiman answered.

Andrea helped out by making Mom and me posters with fancy lettering that said “Number One Brother” or “Love You Mom.” She also got chores done after Mom asked her to do them only once—something you can almost never say about her. My grandparents and some of Andrea’s skating friends took her to practice while Mom stayed with me. Mom said the worst part of my being sick still was that she had to look after Herbie for me. But I never let up telling her how much I wanted a dog of my own. Just in case she ever forgot.

Having AIDS is very expensive. Drugs for AIDS cost so much that if someone in your family has it, you can lose your house and everything you own, trying to pay for treatment. Mom’s coworkers at Delco had collected some money for us, which was really kind of them, but we still had huge medical bills. Especially when Mom wasn’t able to work because I was in the hospital. Nobody in Indiana seemed to know anyone else with AIDS. Even some congressmen Mom called couldn’t give her much advice. She decided her best shot was to sue the company that made my contaminated Factor, to try to have them pay my expenses. This didn’t work, but when Mom’s lawyer, Mr. Vaughan, filed the suit, we found out that this company got blood for making Factor from big cities like New York, San Francisco, Chicago, and Los Angeles. In one of those cities they had collected some blood given by someone who had already been infected with AIDS. Even though you need blood from thousands of people to make Factor, just one infected person can contaminate a whole batch.

I thought about that person, whoever he was. More and more, women and babies are getting AIDS, but back then I figured it had to be a man. Probably a drug user who needed money to buy a fix. I certainly was mad that he’d given infected blood that made me ill too. But maybe he hadn’t known he had the AIDS virus. I wondered what his story was—where he was, how he was doing, whether his family cared about him. Some AIDS patients end up abandoned by their families because they find it’s too tough to look after someone who’s deathly ill, or else they’re ashamed to have a relative with AIDS. I knew I had been pretty lucky that way, and I wondered about him. By this time he probably was a good deal sicker than I was. Perhaps he was dead. We shared the same blood and the same problem. He had changed my life forever, but we would never exchange a word. I thought maybe now I knew a little bit about how adopted kids feel when they discover they’ve never met their real parents.

Because of our suit, a reporter from the local paper, the
Kokomo Tribune,
called Mom and asked her a bunch of questions. So there it was in newsprint: Ryan White, 3506 South Webster Street, has AIDS. Now everyone in Kokomo knew.

Plenty of out-of-towners heard too. I told you that churches and preachers are a big part of life in Indiana. Once we had been in the
Tribune
, all those preachers seemed to be trying to move in with us. We got phone calls and visits from healers as far away as Tennessee and Florida. One man was from Poland, and brought a translator with him! They all claimed—we must have heard from fifty or sixty of them—that they had been sent by Jesus, special delivery, to cure me. I’m religious, but I couldn’t believe that Jesus had sent
all
of them. Mom wanted me healed so bad, she was ready to try anything that might make me well. She said, “What if one of them
is
Jesus—and I turned my back?”

So she let a lot of them come by and take a shot at curing me. Every night one or two showed up and they all had to stay at least four hours. They took over my life—I had no privacy left at all! First, each one had to sit on our sofa for a couple of hours and tell us how holy he was, how many people he’d already healed, and how he’d gotten his call from Jesus to cure me. I wanted to ask, “How did Jesus get your phone number?” but I didn’t dare in front of Mom.

Then each healer had to lay their hands on me, which is how they heal. This usually meant I had to sit or lie on my stomach while he adjusted the vertebrae in my back and neck and realigned my spine. During some of these treatments my bones would make a loud crack, and I’d feel like I’d had an electric charge pass through me. I didn’t think any of this could make much difference if you had AIDS, but I often felt fine afterward for a little while. Maybe nothing else about me was well adjusted, but at least my backbones were!

Then each preacher wanted to pray with us for another hour or so. Even after they’d left, we couldn’t get rid of them. They’d all call back to see if their treatment had worked. Was I healed yet? Mom would take all their calls. I’d mouth, “Get rid of him!” to her, but she felt obliged to be polite. You can’t be rude to someone who might be Jesus. Things got so bad that if the three of us were sitting around in the evening watching TV and the phone rang, we’d look at each other and go, “Uh oh!” Finally I got Mom to start saying I was too weak and worn out to see anybody.

There was no way, though, to stop the “cures” that arrived by mail. When you’re too sick to go out, trust me—the mail is the high point of your day. I’d be tickled when I saw the brown UPS truck pull up to our house and deliver—oh boy!—a package for me. Andrea would get jealous and want to know, “Where’s mine?” I couldn’t wait to open my parcel, but when I did I’d find . . . seaweed. Ginseng, specially grown in Wisconsin. Homemade herbal solutions. Nerve medicine for Mom. We got so many free samples of vitamins and nutrients and pills and formulas and supplements from nutritionists that soon our garage was crammed to the ceiling with cartons and cases and bottles and jars full of stuff we didn’t want. We couldn’t fit the car in anymore! We had enough to open a nutrition store. Mom did take the Wisconsin ginseng to work to give her friends a little extra boost.

These nutritionists also sent me plenty of free advice. Mail is mail—I read all of it. One morning my first letter said, “Whatever you do, don’t touch salt or fried food or pork—it puts worms in your system and it’s deadly to AIDS patients.” These people must have been peeking in Mom’s kitchen window, watching me gobble pork chops and French fries after I’d poured salt on everything! One doctor advised, “If you want to get well, eat five walnuts a day for twenty-one days.” Often the next letter I read contradicted the previous one, and sure enough, my third letter said, “Medicine is poison! Don’t go near anything doctors give you. Fasting is the only road to health.” I was supposed to starve myself to get well.

The next time we saw Dr. Kleiman he asked, “Got any more cures?” Mom told him about the walnut idea. Dr. Kleiman raised an eyebrow at me. “Well, Ryan, do you like walnuts?” he asked with a straight face. That was as close as Dr. Kleiman ever came to the Nutty Professor.

One man who said he was a scientist brought us his personal miracle cure himself. He’d driven all the way from Arizona in a beat-up pickup truck to see us and someone in Russiaville who had lupus, another incurable disease. He handed us a foggy baby shampoo bottle that looked about fifty years old. I hate to tell you what the stuff in it looked like. It was the color of pee and it had brown balls floating in it—rotting leaves and buds, I think. I didn’t really want to get close enough to investigate it thoroughly. I said to myself, “This stuff is going to mean the slow and painful death of Ryan White.”