Ryan White - My Own Story (6 page)

2

How I Got AIDS

I
n August 1984 I was twelve and a half—looking forward to turning into a typical obnoxious teenager. I was an honors student just about to start junior high at Western Middle School, a few miles outside Kokomo in Russiaville. Kids from Kokomo are bussed to Western along with kids from other towns close by. Indiana has lots of towrns named after foreign places—Valparaiso, Vincennes, New Paris. Russiaville is pronounced ROO-shaville—just so you won’t think you’re really in Russia, I guess.

Andrea was eleven, and after four years of practice, she was the ace roller skater she’d always dreamed of becoming. This month she was finally going to the national championships out in Lincoln, Nebraska. She and Mom were very busy. If you want to be a skating champ, you have to practice, and if you’re too young to drive to the rink, someone has to take you. So, on weekdays Mom got up at 4:00
A.M.
to be at Delco from 6:00
A.M.
until 2:30 in the afternoon. She worked on a computer, making sure that three assembly lines in the plant had all the parts they needed. When Mom got home, she and Andrea left for the skating rink, and didn’t come back until 8:30 at night. On weekends Mom and Andrea commuted to meets out of town, or to Chicago where Andrea practiced with a boy who would be a great partner when she competed in events for pairs.

Well, we all went to the nationals, and saw Andrea place second in dance, fourth in freestyle, and fifth in pairs. I was really so proud of her! We all figured, next stop—the Olympics.

I couldn’t go on all her skating trips, so I stayed home alone a lot. Mom wondered whether I’d be scared, especially after the year before, when the tornado hit our house in Windfall. But I wasn’t lonely. I had a girlfriend named Kris who went to Western too, and lived in our neighborhood in Kokomo, so I could walk over to see her when we wanted to do our homework together. If the weather was fine, we sat side by side on her stoop. One day she gave me a needlepoint picture of four hearts surrounding my name. She had stitched it herself and had it framed for me. Wow! I thought. She knows I love presents, so I guess she really likes me.

Then I also had three other good friends who lived right across the street—Chris Sadler, Blair Brittain, and Heath Bowen, who was a year behind me at Western. Sometimes Grandpa took Heath and me fishing with him. Grandpa feels the same way about his fishing boat as I do about cars. It’s a motorboat with high seats so you can see out over the water. He belongs to a bass fishing club in Kokomo, and he’s usually number one in the club because he’s caught the most and the biggest fish at Lake Manitou. But he says there’s always a couple of other guys nipping at his heels, and he has to keep his hand in. I doubt Heath and I were much help with the competition because we usually didn’t want to wait around for a bite. We’d try to get Grandpa to rev up his motor pretty quick and race his boat up and down the lake. When we were along, he didn’t catch very many fish at all.

When we weren’t scaring off Grandpa’s bass, my friends and I all biked endlessly around the streets in our neighborhood, racing each other. We rooted for the Dodgers and the Cubs. Grandpa had loved the Dodgers ever since they played in Brooklyn. I know the Cubs always find a way to lose the World Series, but since we live in Indiana, they’re the closest we have to a home team.

And we were all into playing army, especially me. I felt like I’d started our fad. I already had a big toy-gun collection. Even Andrea had a few pink and green plastic water pistols. I was big on building models of fighter planes. My bedroom ceiling looked like a squadron flying in formation. My aunt Janet had mailed me some camouflage pants and a real parachute from an army store in Birmingham. Chris and Blair and Heath and I would head for the woods, hunt each other over rocks and through trees, and demolish each other with fire crackers. Sometimes we let my oldest cousin, Monica, come along. But Blair and Heath would try to teach her swear words, and I had to shut them up. Her dad, my uncle Tommy, drove me out to the lake every week to go swimming with Monica and her younger brothers, and I didn’t want him getting mad at me.

It’s okay going someplace with my boy cousins, or practicing karate with them in the backyard. But I wasn’t too happy about them coming over and getting into my Star Wars or car collections, or about my sleeping at their house. I mean, a door has a handle; it works nicely. But you can bet that my cousins will ignore the knob and leave their fingerprints all over the door frame and even the wall. Another thing: My youngest cousin, Brian, likes racing up and down stairs. For no reason. Asking him to stop—or just telling him—doesn’t work. Believe me, I’ve tried.

So most of the time when Mom and Andrea went away, I stayed at my grandparents’. That summer Grandma had broken her leg, so I told her, “I’ll take care of
you
for a change.” I fetched her sodas, heated up food for her in her microwave oven, and ran errands on my bike. There was only so much worrying she could do when she couldn’t follow me around. Every now and again, it was a big relief, I can tell you, to have a relative who was sicker than I was. The pressure was off—my family had someone besides me to fuss over for a change. Besides, I could really help because I knew about broken bones and sicknesses from spending so much time in the hospital. Whenever I was stuck in there, I always asked a lot of questions and made sure I knew what medicine I was getting, how much, and why.

Once, later on, I even figured out that Grandpa was having a heart attack before he did. He was sitting on his sofa complaining about chest pains and having trouble breathing. He was sweating something awful, and he was going kind of gray in the face. He couldn’t imagine what was wrong with him. Seemed pretty obvious to me, and it turned out I was right. He got to the hospital, had a big operation on his heart, and he’s been okay since.

That summer Mom didn’t read the papers or turn on the news much. That was before we were on it all the time! Mom was like everyone else in Kokomo: She chatted about what her friends and relatives and coworkers were up to. But Grandpa and I always read
Time
Magazine. For two years we’d been reading about a new disease called AIDS, which stands for Acquired Immune Deficiency Syndrome. Just that spring, scientists had figured out that AIDS is caused by a virus—the kind of bug that gives you the flu—which gets into your blood. Once it’s been there long enough, it knocks out your immune system, which is made up of particular types of cells in your blood that usually help you fight off illnesses and keep you well. Right now there is no vaccine or any other kind of medicine that rids your body of the AIDS virus and repairs your immune system. So once you have AIDS, you start coming down with all kinds of other diseases, and eventually you die from them.

When Grandpa and I first started reading about AIDS, doctors weren’t absolutely sure about all the ways the new virus they had discovered was spread around. They did know that you could get it by having sex with someone who had it, or by using a hypodermic needle that was contaminated with the virus. During sex your body absorbs your partner’s semen or vaginal discharge, which could carry the virus. A needle with contaminated blood on it is like a four-lane highway to AIDS, because you could inject the virus right into your own bloodstream. A third way the virus can get into your blood is from a transfusion of blood or blood products like Factor VIII that happened to come from someone with AIDS.

Because you can get AIDS from doing certain things, some groups of people were in more danger of catching it. One group was gay men, who passed the virus along through sex. For a while, scientists thought only gay men got AIDS, and many people still think of it as “the gay disease,” even though drug addicts get it too. Some addicts who use needles, share them, and they can spread AIDS to others that way. Whenever I had an injection at home or in the hospital, we used a new needle. After all the times I’ve been stuck and all the medicine I’ve had to take, I can’t imagine anyone actually
wanting
to use needles or drugs. But people do. They should find out what it’s like to
have
to take drugs
all
the time!

The last group who could get AIDS were hemophiliacs and other people who needed blood transfusions and injections of blood products. AIDS was kind of lurking around in the background for all families of hemophiliacs, but back then nobody I knew except Grandpa seemed to take it very seriously. Grandpa and I had read everything we could find about it. We heard about older hemophiliacs with severe cases like mine, who had gotten AIDS from the Factor that they needed as much as I did. That upset Grandpa. He started telling Mom not to give me Factor anymore. “I just have a bad feeling it’s not going to work out like we hoped,” he said.

“Dad!” You could tell Mom was irritated. “It’s Factor that’s kept Ryan alive all these years. You know I can’t stop his shots now. It wouldn’t be fair. Without Factor he’d be in the hospital all the time.”

“Jeanne, I’m just scared to death Ryan’s going to catch AIDS,” Grandpa said.

“But Grandpa,” I cut in, “we saw in
Time
that less than one percent of hemophiliacs have AIDS, and they’re older guys—not kids. Maybe they’re gay too, and got AIDS that way.”

Less than one percent—none of them children. That was practically nobody.

Even so, I hadn’t felt very well all summer. Nothing in particular. I didn’t look sick—just kind of sluggish. Mom was so worried, she told Andrea to forget about her partner in Chicago. It just didn’t seem like a good idea to leave me on my own so much. Andrea wasn’t at all pleased—she had finally gotten a partner who was as good as she was—but at least she kept on doing well in her singles events close to home.

I started school okay at the end of August, but by September I was having diarrhea and stomach cramps and even something that hadn’t come my way before: night sweats. I’d wake up all of a sudden in the dark with my sheets sopping wet. Sometimes I had even soaked the mattress. Night sweats don’t hurt, but they’re like throwing up in the middle of the night: You feel out of it and helpless, like you’re two years old. I had to shout for my mom to come help me find something dry to wear and change my bedsheets—camouflage ones, of course. All this work is no fun late at night, but if you don’t do it, you’re very uncomfortable.

After my night sweats started, Mom took me to our regular pediatrician, who wasn’t disturbed by anything she told him had happened to me. He had a simple explanation: “There’s a bad flu going around.” He thought my swollen lymph nodes meant bronchitis. In November we went to the local hemophilia clinic for my regular annual check-up. The staff tested my blood, as they always did, and told Mom it showed that I’d had hepatitis during the past year—a liver infection you can pick up from contaminated Factor. Mom said to me, “Well, that explains how you’ve been.”

On the way home from the clinic, we picked up a new batch of Factor from the hospital, and noticed something on it that we hadn’t seen before: a warning about AIDS, like the notice on a pack of cigarettes that says you should know that they’re hazardous to your health. I felt funny seeing that—especially since I’d read that Factor was being treated with heat to wipe out the AIDS virus. The sign made Mom uncomfortable too. “I feel like I’m playing Russian roulette with your life, giving you this stuff,” she said.

I
TURNED
thirteen on December 6, and being a teenager was no big improvement. I couldn’t seem to stop coughing, and by the time I got off the school bus at the end of the day, I was beat. The day after my birthday, a Friday, was particularly bad. I just about managed to stagger into the house. “Mom, you’ve got to do something!” I yelled. “I could hardly drag myself off the bus.”

I spent the whole weekend sleeping on the couch, barely bothering to hit the bathroom. I was coughing so much I was out of breath. When Mom took my temperature and discovered it was 103 degrees, we took a fast trip to the local hospital. The doctors took some X rays of my chest. Pneumonia in both lungs, they said. After three days, I had to be transferred to James Whitcomb Riley, the special children’s hospital in Indianapolis. By that time I needed an oxygen mask to breathe. The doctors and nurses had been pounding my back to make me cough.