Ryan White - My Own Story (17 page)

Sean Lennon and Ryan at the AmFAR benefit, 1986.

Heather McNew and Ryan in New York City, 1988.

Ryan’s grandparents, Gloria and Toni Hale, with their daughter Jeanne.

Ryan at a AmFAR benefit, 1986, wearing a tux and sneakers.

B
UT THINGS
didn’t improve much over the summer. I was barred from swimming in several pools in town. One day I fell out of a tree. I wasn’t hurt—I didn’t bleed—but the fall did knock the breath out of me. So I just lay on the ground for a few minutes. A neighbor leaned over the fence and called to me, “Are you hurt?” I could tell he didn’t want to come over and touch me.

Another time I spent the whole day out in the sun, and that night I found great big red spots all over me. I told Mom, “I’m really scared.” She was too, but by morning, the spots had disappeared. Whew. It turned out that I had had some sort of allergic reaction to sunlight. Mom was trying to live day to day, watching me for a runny nose or a bad cough or a dragged-out look—any sign I might be getting sick again. I was having night sweats again, and ran high fevers for no reason. That can mean really bad news when you have AIDS, but most of the time, my fever vanished the next day.

“This is like being on a roller coaster,” Mom said. “You never know what’s next.”

In July we got word that Chad had died.

Chad was another hemophiliac, a couple of years older than I was, who lived in Fort Wayne. I had met him when we were both poster boys for the Hemophilia Society. Then I saw him again the last time I was in the hospital, when I was vomiting so much. Chad had gotten AIDS from his Factor, just like me.

At that point, after I’d had those two seizures, Dr. Kleiman was worried about me because I was losing so much weight from throwing up. He wanted me to have a central line, a kind of feeding tube. He explained that if I got one, I wouldn’t have to try to keep food down. The central line would put nutrients into me anyway. But I fought him on it because I can’t stand anything that shows I’m seriously, seriously sick, or that prevents me from moving around much—that’s one reason why I don’t care for IVs. You have to sit or lie still while you’re being fed through a feeding tube.

Some of the nurses wanted me to talk to Chad, who already had one. Chad moved very slowly, like an old man. He fell asleep constantly. He didn’t think he’d ever get better. As far as I was concerned, he had the wrong attitude.

Chad really liked his tube. “This way I don’t have to eat, and I never throw up,” he told me.

“No way,” I retorted. “No pain, no gain.”

Dr. Kleiman won, but in the end my vomiting stopped, and I didn’t have to bother with the tube for very long. Chad had had a brain scan, a test that can show whether the AIDS virus has affected your brain. After I had those seizures, Dr. Kleiman wanted me to have one too. I fought him hard on that one too, even though he just wanted to make sure the seizures hadn’t caused any bleeding in my brain. (They hadn’t.) I didn’t want anyone to think I was like Chad.

What has always scared me most about AIDS is that when you have it really badly, it
can
affect your brain. I’d read that it first starts with you not being able to remember things. Then you begin to say things that make no sense. Sometimes you don’t recognize your family, and you even fight them off. I never wanted to treat Mom like that. When the AIDS virus attacks your brain this way, you sound senile or demented, because you have dementia. You don’t get over dementia. You never improve. Usually it happens just before you die. I definitely did not want to end up like that.

Chad Heckler, age fourteen.

It turned out the AIDS virus
had
affected Chad’s brain. That was why he walked and talked like he was eighty years old. He never was well enough to go back to school. His mother told Mom he started going to sleep on his phone hookup. Then he got so he didn’t know his mother. When he died, it was less than a year since he’d been diagnosed.

Chad made me feel really lucky. I’m convinced that if you think about dying, you’re going to die. If you think about living, you’re going to live. I wasn’t looking forward to the harassment I’d probably get back at school, but at least I’d be showing up. Like me, Chad had had a girlfriend who wanted to be “just friends” after he was diagnosed. But I figured sooner or later, so long as I wasn’t stuck in a hospital, there’d be another girl for me.

Ryan and Andrea in their AmFAR T-shirts, May 1986.

I started high school in late August. Most of the kids who had been in the school their parents had set up were back at Western. The parents had been able to borrow the old American Legion hall for six weeks last spring, but they couldn’t find a free building for a whole year.

Then in early September I had to go back into Riley Hospital for some tests for my liver and my lung trouble. A couple of months later, in November, I started coughing more than usual. The coughing wouldn’t let up. One morning in the bathroom, my mouth tasted strange, and I spat into the sink.

My spit was bright red.

Mom was scared to death. We raced back down to the hospital, with me in the backseat, hanging over a bucket.

I was really sick, so sick I had to spend another birthday in the hospital when I turned fifteen. Mom asked Dr. Kleiman whether it would help to put me in a bubble so I’d be protected from diseases, but he said it only worked for newborns, who hadn’t been exposed to diseases yet.

In the meantime we heard that Mark, the baseball player with AIDS who used to call me, had died. The news said he’d been buried like a hero in Swansea. His high school was naming a scholarship after him. I hoped Mr. Vaughan had been right. After me, maybe other kids with AIDS wouldn’t have so much trouble.

We had to miss Elton’s concert in Texas because I was still in the hospital. Elton had called Mom at work to try to make plans. The operator told Mom, “Jeanne, we only put legitimate calls through, but I think this really
is
Elton John.” People crowded around while she was on the phone with him, trying to catch a word or two. He told Mom, “Don’t worry—tell Ryan we’ll catch up with each other in L.A.”

Whenever I was in the hospital, I had a room in the school-age unit, with seven- and eight-year-olds. That way I had more privacy. If any reporters came around, they looked for me in the teen unit. But one day, believe it or not, a reporter disguised herself as a nurse, sneaked into the school-age unit, ran into Mom in the corridor, and started asking her questions. Mom yelled for the real nurses, who came and chased the reporter out. But after that, I was really nervous about being stuck in the hospital. I was afraid that the next invader might be someone who hated people with AIDS coming to put poison in my IV. That idea was much worse than any old tornado. So Mom hardly ever left me. She slept in my room in a lounge chair that turned into a bed.

After that I told Mom, “I don’t want to die in Kokomo. And I don’t want to be buried there, either.” In Indiana, you can see graveyards really easily. They’re right alongside the roads. There was one I’d seen near a little church on a hill, along the highway south of Kokomo. We passed it whenever we drove Andrea to skating practice. I told Mom I’d picked out that cemetery for myself.

I wasn’t scared of dying, so long as I wasn’t in Kokomo. I liked thinking about my cemetery. It looked really peaceful. Maybe I’d put a joke on my tombstone. Something like, “I told you I was sick.”

I wasn’t in the intensive care unit, so Laura wasn’t my regular nurse. Usually I had Connie or Laurie. They were both really nice to me, but I tried to get Laura to hang out with me as often as she could, for as long as she could. I never actually said, “Don’t leave me alone” out loud, but I’d bug her to play another game or another tape with me. I tried to trick her with puzzles. Here’s one: I drew “IX” on a piece of paper, and asked her, “With one line, can you make this a six?”

Well, I kept her around a long time with that one. The answer is to draw an “S” in front of the “IX,” but Laura never did guess right.

Other times I’d quiz her about her boyfriend—she ended up marrying him—and about her car.

“What kind do you have?” I asked her.