Ryan White - My Own Story (7 page)

“You’re not coughing hard enough,” they said. I got mad because I was coughing as hard as I could. But my lungs wouldn’t clear. I was burning up with fever, and could only bark out quick questions, like “Mom, what’s happening? What are they going to do to me?” Mom squeezed my hand tight, but she had no idea.

Mom told me later that as my ambulance took off for Riley, all its sirens wailing at once, all she could think was,
I can’t lose Ryan.
She grabbed Andrea and a little Christmas tree she had put beside my bed. All of a sudden Mom remembered the warning on my Factor. She turned to one of my nurses, and asked, “Did my son’s doctors say anything about AIDS?”

The nurse looked shocked. “Oh
no,”
she said. “That never came up.” Mom thought she could relax. She and Andrea followed me down to Indianapolis.

Bur when we got to Riley, the doctors rushed me into intensive care and told Mom I might have tuberculosis, lung cancer—or AIDS. They ruled out TB almost immediately, so Mom round herself actually praying that my problem might be
just cancer.
Imagine, my own mother. Because I had pneumonia, which is infectious, I was assigned to a new doctor at Riley. a specialist in infectious diseases named Dr. Martin Kleiman. Mom liked him right away. She said he reminded her of the Nutty Professor—probably because he has a beard. Dr. Kleiman always takes care to speak precisely: he never sounds nutty. If he ever does. I suspect it will be because Mom and I drove him nuts. We ended up knowing him for so long. When I met him, Dr. Kleiman was a bachelor. Now he’s married and has a son and a daughter. He always wears a button with a photograph of them on his jacket lapel. And he has more gray in his beard than he did when I first knew him.

I had been on medication for twenty-four hours, but I was getting worse and worse. Dr. Kleiman told Mom, “We’re going to have to operate on Ryan right away. The surgeons have to cut out a small piece of his lung so that we can test it and find out what’s wrong with him. Then I’ll know how to treat him. Right now, I don’t.”

Now, surgery is always something a hemophiliac wants to avoid. You need Factor the whole time so you don’t bleed to death. So Mom knew that what Dr. Kleiman wanted would be difficult and dangerous for me. I might die if they operated—and I might if they didn’t. Still, she was impressed that a doctor was telling her he didn’t know it all. “Go ahead.” she said.

I was still feverish and confused about where I was and what was going on. Mom did make it clear that I would be put out and wouldn’t feel anything, so I nodded my okay. I didn’t want to be in more pain than I had to be.

My operation was long and complicated. It was getting late, but Mom knew she’d never get any sleep until my surgery was over, all my tests had been run, and the doctors could tell her the results. So she and Andrea camped out in the visitors lounge. Mom tried to doze in a chair, while Andrea curled up in a sleeping bag underneath, holding on to Mom’s hand the whole time.

Close to midnight Dr. Kleinian came looking for Mom.

Dr. Martin Kleiman examines Ryan.

“What’s wrong?” she asked. His face said his news wasn’t good.

“I’d like to tell you in private,” Dr. Kleiman demurred. There were still about a dozen visitors sacked out around the lounge.

Mom gently shook Andrea, and still holding hands, they followed Dr. Kleiman to an empty conference room and sat down, their eyes glued to him.

“We got the test results back,” Dr. Kleiman began. “They show that Ryan has pneumocystis pneumonia. It’s a very rare type of pneumonia. Jeanne, it means Ryan has AIDS.”

Mom started to sob. She cried very easily in those days. Andrea didn’t cry and she didn’t say a word. She just clutched Mom’s hand tighter than ever. Andrea is better at keeping how she feels to herself. An older brother can be a royal pain, but she was thinking, I don’t want him to die! He
won’t
die!

“How long does Ryan have to live?” Mom managed to ask.

“I can’t say because I don’t know,” Dr. Kleiman said. “He came through surgery okay, and I think we can get him over his pneumonia, but it could come back again. That happens to quite a few AIDS patients.”

My fate was as bad as it could be—and Mom felt it could be her fault. She blurted, “Oh, why didn’t Ryan die during surgery?” Then she realized what she’d said. “I’m
really
sorry,” she told Dr. Kleiman, “I didn’t mean that at all.”

“I know,” he said. “It’s all right, Jeanne.”

Mom thought a minute before she spoke up again. “How long has Ryan had AIDS?” she asked. She was wondering which batch of Factor in our refrigerator had been the evil one. One batch is good for about a dozen injections, so Mom figured she could have been giving me contaminated Factor for a long time.

“We have no way of knowing,” Dr. Kleiman said. “We can’t tell. Ryan may have picked up the virus a year or two ago, and it lay dormant until now.”

A year—maybe two! Mom felt chilly. Was there any chance that she or Andrea—or any of our relatives—had gotten infected too? She tried desperately to think of everything that had happened to our family in the past two years. Her stomach knotted as she counted up all the bottles of soda the three of us had passed around. Had she ever pricked her finger on a needle when she was giving me Factor? Then there had been that field trip my class took to Chicago last year. Mom had come along on the school bus as chaperone. On our way home the driver slammed on his breaks to avoid a car. I had pitched forward and cut my ear on the seat in front on me. All the way back home to Windfall, Mom had kept her hand pressed tight over my ear to try to staunch the bleeding. Now she wondered, Did I have any cuts on my hand then? Would any of Ryan’s blood have gotten into them—and into
my
blood? If it did, then
I
could have AIDS too! And what about our plates and sheets and towels and the toilet and even toothpaste? Mom didn’t know. She was scared for me, for herself, for Andrea, for our whole family.

She asked Dr. Kleiman to run all my tests again, to make absolutely sure I had what he thought I had. And she asked him to test her and Andrea for AIDS as well.

“Of course,” Dr. Kleiman said. “But you don’t have to worry. Nobody who lives with an AIDS patient has ever gotten the virus. You can’t catch it from casual contact with Ryan, and neither can Andrea.”

“I can kiss Ryan, can’t I?” Mom asked.

“Yes, Jeanne,” Dr. Kleiman said, “you can kiss him.”

S
O
M
OM
went to intensive care to kiss me. When she looked in, I was still unconscious after my surgery, and I was a pitiful picture. I had drainage tubes running out of the incision the surgeons had made in my chest. To get medicine and nutrients into me while I was out, they had put intravenous tubes, or IVs, in my feet because I had gotten so thin from having diarrhea that they couldn’t find any veins in my arms. I was glad I was asleep when they did
that.

But worst of all, according to Mom, I had tubes up my nose and a plastic mask over my mouth that was hooked up to a scary-looking machine called a respirator or ventilator, which gives you oxygen and breathes for you when your lungs are weak. The machine chugs away like a steam engine, filling your lungs with oxygen and then taking it out, so that your lungs fill and deflate just as they would if you were breathing on your own. Even if I had been awake, I couldn’t have spoken to Mom. My eyes were bandaged, so that when I came to, I wouldn’t see myself and panic.

My room was dark, except for the blinking lights on the ventilator’s controls, and my guardian angel, a little night-light that had been a present from one of Mom’s friends at church. Mom always put it in my room whenever I was in the hospital. If I woke up late at night, there was my angel, glowing in the dark.

Mom couldn’t stand to see me looking so sick and pathetic. She started to cry again, and hurried out of my room. She’d vowed she was never going to cry in front of me, because she figured that if I knew how scared she was, I might give up. She was still hoping that my tests might be wrong, because she didn’t think she could face telling me I was dying.

She called my grandparents in Kokomo, who were waiting by their phone for news about me. Grandpa was devastated. He’d read that AIDS patients usually live only three to six months.

“Well,” Mom answered, “Dr. Kleiman didn’t say that. He said that AIDS is so new, we should take this whole thing one day at a time.”

Poor Grandpa wasn’t really listening. All he knew was that his worst fear was real now: His first grandson had a deadly disease with no cure. He began to cry and had to get off the phone. Grandma told me later it was the first time in forty years of marriage that she had seen tears in his eyes.

Grandma was more mad than sad right then. “It’s homosexuals that started this disease,” she declared. Now, that’s a myth that a lot of people all over the country believe. Especially in Kokomo, it doesn’t make sense because ninety-five percent of the people are just like everyone else, and the other five percent lie pretty low. Mom had told me she had a sense that one or two people she knew at work were homosexuals, but they were extremely discreet. Grandma probably thought AIDS was gays’ fault because she’s very, very religious, and according to her religion, being homosexual is a sin.

“Listen to me,” Mom said to Grandma, very slowly and calmly. “Ryan has AIDS because of his hemophilia. I gave him the bad gene that passed hemophilia on to him. I gave him the Factor that infected him with AIDS. So if you want to blame this on anyone, blame it on me.”

Even though my grandparents were so very, very upset, it never occurred to them to stay away from me or from Mom—then or ever. They wanted to lend Mom a hand, or at least a couple of shoulders to cry on. They were ready to start for the hospital right away, that night. But Mom told them to wait until the next day. She had asked Dr. Kleiman if she could be the one to tell me what was wrong with me, and she didn’t want to do it right away.

“If you come so soon, he might guess,” she explained. “I want to wait until the day after Christmas. You know how he always loves Christmas and all his presents. Let’s let him enjoy this one—it might be his last.”

Next Mom felt she had to call Dad.

“Why bother?” Andrea snapped. “He won’t care.”

Andrea had a point, but even though my parents had been divorced for seven years and hardly spoke, he was still supporting my sister and me. Mom believed that Dad had a right to know what happened to us. The few times that Mom had called him, he usually answered with a nasty, “What is it
now?”
This conversation was no exception. Mom gave Dad the news. He seemed to have nothing to say about me, so she hung up. That was that.

Eventually, Dad did show up at the hospital, but right away he and Mom got into an argument because he wanted to tell me I had AIDS
now.
Otherwise I might hear about it from someone in the hospital, he said. Mom told him off good: “Don’t you
dare!
My son has been through plenty of pain and misery ever since he was born. I’m not going to ruin his Christmas!” Next, Mom called Steve, who worked nights at Delco. He drove straight down to Riley as soon as he got off his shift, so she told him about me in person. He was much more upset than Dad had been, and he told Mom she was doing the right thing by holding back her news until after Christmas. Mom also wanted to wait until I was stronger. Once I was off the respirator, she knew I’d realize I was getting better, and wouldn’t be tempted to give up after I heard the truth.

I was awake by now, but I was still in intensive care. I didn’t feel so hot. My operation hadn’t been nearly as bad as this tube I had stuck down into my chest. A chest tube is painful even when you’re feeling great. But because I still had pneumonia, every cough and every breath made the tube hurt more. The more I moved, the more the tube rubbed against my throat, and the more I felt like coughing. The tube made it almost impossible to get into a comfortable position and lie still, even though I was taking painkillers.

Not a great situation. Besides, you can never get any sleep in a hospital. Someone is always shining a flashlight in your face to wake you up so they can take your blood pressure or something. I couldn’t relax, but I had to, because I was still on the ventilator. You can’t fight the machine; you have to lay back and let it do its work. I had to tell Grandpa to do that, when he was on a ventilator after his heart attack. If you get tensed up, it’s even harder to breathe. And you must make sure that the nurses clean out your mask regularly—otherwise your saliva collects in it, clogs it up, and makes you cough more. I couldn’t talk, so I scrawled notes. I had to write the nurses a good many notes about that.

That’s what I was up to the first time Mom and Andrea and Steve came in to see me. They were all wearing surgical masks and hospital smocks, but I barely noticed. Mom and Andrea seemed fairly subdued. Steve chatted about how the weather was turning colder and there was a good chance we’d have a white Christmas. That December was very mild, and my room was very hot—close to ninety degrees! Soon time was up, and as my family filed out, Mom kissed me on the forehead—the only part she could reach—and handed me my guardian angel.