Ryan White - My Own Story (33 page)

Jeanne has accepted many awards on Ryan’s behalf, including honors from the National Association for the Advancment of Colored People (NAACP) and the American Civil Liberties Union (ACLU). She has spoken at the United Nations at ceremonies honoring the world’s children. Participants honored Ryan with a minute of silence. She has worked with Senators Kennedy and Hatch lobbying Congress for a bill they co-sponsored, known as “The Ryan White Care Bill,” to provide comprehensive care for AIDS patients and their families. While lobbying, she described trying to get medical help for Ryan from overcrowded clinics during his last trip to Los Angeles. “If Ryan couldn’t get help—and he was one of the best-known AIDS patients in the United States—can you imagine what it’s like for the others?” The bill was eventually passed.

Jeanne says, “The worst thing Ryan did when he died was leave me all his animals to take care of.” Jeanne is thinking about adopting a child—the brother or sister Ryan and Andrea always wanted. But she adds, “If people refer to me for the rest of my life as ‘Ryan White’s mother,’ I’ll be proud.”

Meanwhile, Jeanne would like to go on working in AIDS education. She spends hours on the phone with other children who have AIDS and their parents—as she and Ryan both did when he was alive. Last September she spoke to the mother of an eleven-year-old boy in Brooklyn, New York. He was infected with AIDS from a blood transfusion in 1984. When he told his junior high school that he had AIDS, parents of about a dozen classmates threatened to keep their children out of school.

This boy’s predicament is the kind of injustice that Ryan always wanted to fight—or, as he put it, “die trying.”

RYAN  WHITE

by Michael Jackson

Ryan White, symbol of justice.

Or child of innocence,

Messenger of love.

Where are you now,

Where have you gone?

Ryan White, I miss your sunny days.

We carelessly frolicked in extended play.

I miss you Ryan White.

I miss your smile,

Innocent and bright

I miss your glory,

I miss your light.

Ryan White, symbol of contradiction.

Child of irony, or

Child of fiction?

I think of your shattered life

Of your struggle,

Of your strife.

While ladies dance in the moonlit night.

Champagne parties on chartered cruises.

I see your wasted form

Your ghostly sight.

I feel your festering wounds,

Your battered bruises.

Ryan White, symbol of agony and pain.

Of ignorant fear gone insane.

In a hysterical society,

With free floating anxiety

And feigned piety.

I miss you Ryan White,

You showed us how to stand and fight.

In the rain,

You were a cloud burst of joy.

The sparkle of hope

In every girl and every boy.

In the depths of your anguished sorrow

Was the dream of another tomorrow.

A  TRIBUTE  TO
RYAN  WHITE

by Elton John

I have met a lot of people in my life who were brave and courageous. But when I met Ryan, he gave new meaning to these words. Having the AIDS virus is a scary horrible thing to cope with. But Ryan coped silently and with great pain. He had the dignity to bring the message of hope to all those who have this terrible disease. Although young, he had wisdom beyond his years. It is as if God had chosen him to ease the prejudice that people have towards AIDS victims. I firmly believe that during his short life on earth, Ryan touched millions of people, and I believe that in his new life he is doing the same. Ryan White was a miracle of humanity.

Ryan’s Testimony Before the President’s Commission on AIDS

Thank You, Commissioners:

My name is Ryan White. I am sixteen years old. I have hemophilia, and I have AIDS.

When I was three days old, the doctors told my parents I was a severe hemophiliac, meaning my blood does not clot. Lucky for me, there was a product just approved by the Food and Drug Administration. It was called Factor VIII, which contains the clotting agent found in blood.

While I was growing up, I had many bleeds or hemorrhages in my joints which made it very painful. Twice a week I would receive injections or IVs of Factor VIII which clotted the blood and then broke it down. A bleed occurs from a broken blood vessel or vein. The blood then had nowhere to go so it would swell up in a joint. You could compare it to trying to pour a quart of milk into a pint-sized container of milk.

The first five to six years of my life were spent in and out of the hospital. All in all I led a pretty normal life.

Most recently my battle has been against AIDS and the discrimination surrounding it. On December 17, 1984, I had surgery to remove two inches of my left lung due to pneumonia. After two hours of surgery the doctors told my mother I had AIDS. I contracted AIDS through my Factor VIII which is made from blood. When I came out of surgery, I was on a respirator and had a tube in my left lung. I spent Christmas and the next thirty days in the hospital. A lot of my time was spent searching, thinking, and planning my life.

I came face to face with death at thirteen years old. I was diagnosed with AIDS: a killer. Doctors told me I’m not contagious. Given six months to live and being the fighter that I am, I set high goals for myself. It was my decision to live a normal life, go to school, be with my friends, and enjoying day to day activities. It was not going to be easy.

The school I was going to said they had no guidelines for a person with AIDS. The school board, my teachers, and my principal voted to keep me out of the classroom even after the guidelines were set by the I.S.B.H., for fear of someone getting AIDS from me by casual contact. Rumors of sneezing, kissing, tears, sweat, and saliva spreading AIDS, caused people to panic.

We began a series of court battles for nine months, while I was attending classes by telephone. Eventually, I won the right to attend school, but the prejudice was still there. Listening to medical facts was not enough. People wanted one hundred percent guarantees. There are no one hundred percent guarantees in life, but concessions were made by Mom and me to help ease the fear. We decided to meet everyone halfway.

(1) Separate restrooms

(2) No gym

(3) Separate drinking fountain

(4) Disposable eating utensils and trays

Even though we knew that AIDS was not spread through casual contact. Nevertheless, parents of twenty students started their own school. They were still not convinced.

Because of the lack of education on AIDS, discrimination, fear, panic, and lies surrounded me.

(1) I became the target of Ryan White jokes

(2) Lies about me biting people

(3) Spitting on vegetables and cookies

(4) Urinating on bathroom walls

(5) Some restaurants threw away my dishes

(6) My school locker was vandalized inside and folders were marked FAG and other obscenities

I was labeled a troublemaker, my mom an unfit mother, and I was not welcome anywhere. People would get up and leave, so they would not have to sit anywhere near me. Even at church, people would not shake my hand.

This brought on the news media, TV crews, interviews, and numerous public appearances. I became known as the AIDS boy. I received thousands of letters of support from all around the world, all because I wanted to go to school. Mayor Koch, of New York, was the first public figure to give me support. Entertainers, athletes, and stars started giving me support. I met some of the greatest, like Elton John, Greg Louganis, Max Headroom, Alyssa Milano (my teen idol), Lyndon King (Los Angeles Raiders), and Charlie Sheen. All of these plus many more became my friends, but I had very few friends at school. How could these people in the public eye not be afraid of me, but my whole town was?

It was difficult, at times, to handle; but I tried to ignore the injustice, because I knew the people were wrong. My family and I held no hatred for those people because we realized they were victims of their own ignorance. We had great faith that, with patience, understanding, and education, that my family and I could be helpful in changing their minds and attitudes around.

Financial hardships were rough on us, even though Mom had a good job at G.M. The more I was sick, the more work she had to miss. Bills became impossible to pay. My sister, Andrea, was a championship roller skater who had to sacrifice too. There was no money for her lessons and travel. AIDS can destroy a family if you let it, but luckily for my sister and me, Mom taught us to keep going. Don’t give up, be proud of who you are, and never feel sorry for yourself.

After two and a half years of declining health, two attacks of pneumocystis, shingles, a rare form of whooping cough, and liver problems, I faced fighting chills, fevers, coughing, tiredness, and vomiting. I was very ill and being tutored at home. The desire to move into a bigger house, to avoid living AIDS daily, and a dream to be accepted by a community and school, became possible and a reality with a movie about my life,
The Ryan White Story.

My life is better now. At the end of the school year (1986–87), my family and I decided to move to Cicero, Indiana. We did a lot of hoping and praying that the community would welcome us, and they did. For the first time in three years, we feel we have a home, a supportive school, and lots of friends. The communities of Cicero, Atlanta, Arcadia, and Noblesville, Indiana, are now what we call “home.” I’m feeling great.

I’m a normal happy teenager again. I have a learner’s permit. I attend sports functions and dances. My studies are important to me. I made the honor role just recently, with two A’s and two B’s. I’m just one of the kids, and all because the students at Hamilton Heights High School listened to the facts, educated their parents and themselves, and believed in me.

I believe in myself as I look forward to graduating from Hamilton Heights High School in 1991.

Hamilton Heights High School is proof that AIDS education in schools works.

“Does AIDS Hurt?” Answers to Questions People Ask

R
yan frequently appeared on television and in public to answer questions from people of all ages about AIDS. He made a special point of talking to children and teenagers because they responded so well to him. He also was particularly concerned about teenagers because they are at such high risk—they are more likely to experiment with sex and drugs. More than twenty percent of people who have AIDS are diagnosed in their twenties. That means that they may have been infected during their teens. And AIDS is spreading faster and faster among teenagers.

Today it’s extremely unlikely that you could get AIDS the way Ryan did. Blood transfusions and blood products like Factor VIII are treated so that they no longer harbor the virus. AIDS is a disease that is hard to catch. You usually have to behave in certain ways to get it, so there are ways to make sure you don’t.

Ryan believed that both AIDS and prejudice against people with the illness are spread by ignorance. He was convinced that education would cut down the number of AIDS cases—and quell the prejudice that he and other patients have suffered.

Ever since 1981, when AIDS was discovered, it has been an epidemic. Across the United States, about sixty-five people die of it every day, and over 130 more learn they are infected. People infected with the AIDS virus live in every state, and in most other countries around the world. To continue Ryan’s campaign, here are answers to questions people asked him most frequently about the illness.

What is AIDS?

AIDS stands for Acquired Immune Deficiency Syndrome. “Acquired” means it’s a disease that you can be infected with; it’s not an illness you are born with, like hemophilia.

“Immune deficiency” means a breakdown in your body’s defense system against disease. AIDS is caused by a virus, a tiny germ that has to live inside a living cell. The AIDS virus is also called HIV, which stands for human immunodeficiency virus. When the virus enters your body, it invades a cell that’s part of your immune system, and turns the injected cell into a virus factory, churning out copies of its invader. Those many copies of the original virus attack other cells that are key parts of your immune system. You then can get rare diseases that would not affect you if you were in normal health.

“Syndrome” means a group of signs or symptoms that occur in a particular illness. If you have either of two unusual diseases, that’s almost always a sure sign that you have AIDS. Those diseases are
Kaposi’s sarcoma,
an uncommon cancer, and
pneumocystis carinii pneumonia
(also known as pneumocystis pneumonia or PCP), the rare kind of severe pneumonia Ryan had when he was first diagnosed in 1984.

When you’re in normal health, your immune system can withstand many kinds of viruses, including those that cause flu. But when you have AIDS, your body can’t fight off infections. Over time you become less and less able to fight off diseases. Eventually the illnesses you’re susceptible to lead to your death.

How does it feel to have AIDS? Does AIDS hurt?

Many people with AIDS are like Ryan: They feel fine for long periods of time. People with AIDS can take medicines to help strengthen their immune systems and ward off dangerous illnesses that don’t threaten healthy people. But AIDS can be very uncomfortable, and some of the drugs you may be given have unpleasant side effects.

Many of the symptoms of AIDS feel rather like having the flu. Like Ryan, you may have night sweats, fevers, a cough, and shortness of breath. You may have swollen lymph glands that last a long time—six weeks or so—in your neck, under your arms, or in your groin. You may lose your appetite and have diarrhea constantly. You may feel very tired and run-down. Some people with AIDS say they often feel as though they’ve aged prematurely. You may have persisting skin rashes, or white patches or sores in your mouth that last a long time. If you have Kaposi’s sarcoma, you may find patches or bumps the color of bruises on any part of your body.