My Son Ryan and AIDS
In 1984, one week before Christmas, Jeanne White was told that her son Ryan had contracted AIDS from a blood product he’d used to control his hemophilia. The doctors gave him six months to live.
Struggling to make life as normal as possible for her thirteen-year-old son, she attempted to have him return to school as soon as possible. She did not realize the amount of fear and prejudice that would result when the school heard of his illness and refused to allow his return.
After numerous court battles, which brought he and his mother to national and international attention, Ryan was allowed back in school only to be inundated with hate, ignorance, and abuse. As a result of their struggles Ryan was befriended by numerous celebrities such as Elton John, Michael Jackson and Phil Donahue and began to educate children and parents about AIDS by speaking at schools, appearing on numerous talk shows and news programs and having a movie about his life broadcast on national television.
Shortly after Ryan’s death his mother Jeanne, who had always been behind the scenes publicly, was asked by several senators to speak about Ryan to Congress in order to pass national legislation for AIDS education. She reluctantly agreed and was instantly thrown into the media spotlight. The bill, THE RYAN WHITE CARE ACT, was subsequently passed and Jeanne White became one of the most sought-after speakers in the country. She founded the Ryan White Foundation and continues advocating for AIDS education and prevention with children, teenagers, and their peers.
A lot of times it takes a little push. Everybody likes feeling sorry for themselves over the death of a loved one. That’s kind of normal. With me it was Senator Kennedy and Senator Hatch who got me going and I fought it every step of the way. Ryan was always the public speaker, not me. I was just following Ryan around. Senator Kennedy and Hatch had just named a bill after Ryan called the Ryan White Care Act and they wanted me to come to Washington DC. It was too soon.
We had just buried Ryan two days before and they asked me to come anyway. They knew it was going to be hard, but they said, “You know, this is the first chance that we have of getting something done for people with AIDS.” They said, “Ryan’s death is so fresh on everybody’s mind, his illness and funeral was carried by every network for the last week and a half. This is the first chance of someone being in the public eye that takes the focus off the disease and puts it on to the fact that ‘anybody can get it.’”
I said, “Yes”. I said, “No”. I said, “I can’t, I really can’t. Ryan used to do that, not me.” On the second day, people from Senator Kennedy’s staff called me again. They said, “Terry’s going to be there.” Terry and others had helped me through a lot of bad times. During all the years that Ryan fought AIDS the more people I knew that died of AIDS. And I had seen so many families just like me. Even though I didn’t want to get involved, so many people helped me that I kind of felt like I owed it to them. Then Senator Hatch called me and said, “You know, we’re not going to take ‘no’ for an answer. I have twenty-three senators lined up for you. All we want you to do is tell what it’s like to watch your son live and die with this disease.”
So I went to Washington and I’m so glad I did. It made me feel good. I didn’t feel I did great, not like I wanted to. I could have done better but I knew I was sincere in what I felt and said. After that, people wouldn’t let me stop.
Phil Donahue, who was a pallbearer at Ryan’s funeral, has become a very good friend of the family. When he was in the hospital visiting Ryan he noticed all the mail and could not believe how much was pouring in. He took a bunch of the letters back to New York with him and called saying, “Do you realize these letters are all from kids?!” I said, “Well yeah, that’s who generally wrote Ryan.” He said, “Jeannie, you’ve got to continue this work. You’ve got to answer this mail.” Phil said, “I’ll hire you an assistant.” There were over sixty thousand letters! Phil kept his word and with the help of Marlo Thomas and the St. Jude volunteers, they were able to find a lady that lived close by.
I was so impressed with Ryan, so proud of him. Sometimes I’d think, “Golly, is he really my son?” To me, he was just my little kid, but to the nation, he was this celebrity and hero. I hated to even think that I could follow him, his impact was so great and people listened. When I speak I’m always a nervous wreck, even though I’ve been doing it now for years. I’ve messed up a lot, but I’m me. When I introduce myself I say, “I’m just a mom. I’m a mom just like your mom and because of this misunderstood disease called AIDS, my life changed overnight.” I say a prayer every time I go out. I say, “Lord, please help me to get through this. Help me educate these young people. Help me make a difference in their lives with my story.” Then I say, “Ryan, please be there with me.” Then I have this kind of surge that goes through me and I feel like its Ryan saying, “OK, Mom, I’m with you.”
I think we’ve made a lot of progress. By “we” I mean everybody who has committed so hard to fighting this disease with education and through therapy and drugs and medical treatment. I think we’ve come a long way. The people who have to be commended the most are the people that are not here. Their lives had to be lost for us to get where we are today, to show compassion. Even though I’m tired I’m still doing it because of the Terry Burns, the Mike Callums, and the family members that I’ve seen.
One day we were riding in the van and Ryan reached over and grabbed my hand and started swinging it. I looked over and said, “OK, what do you want?” He said, “I don’t want anything.” “Come on Ryan, what do you want?” I continued. He replied, “Can’t a son hold his mother’s hand? ” I said, “Come on, you really don’t want anything?” “Mom, I just want to say thank you for standing by me, for always being there for me.”
I remember that moment when I speak to teenagers. You know, we always think everybody’s going to be here tomorrow, but one day you’re going to wake up and somebody’s not going to be there. I say, “You might think this stupid old lady up here doesn’t know what she’s talking about, but I do. The next time you go home from school, even if you think it’s the corniest thing you’ve ever done, write a letter to your parents. If you think you’re real cool and you can’t go up and hug them around their neck and say, ‘Mom. Dad. Thank you. I love you.’ Then write a note and put it on their pillow. Do something so that you’ll never be sorry.”
It would have been easy to be mad all the time at the people who ridiculed us, who discriminated against us, but we had to put our lives in perspective and look at what was really important and what wasn’t. Everybody saw on the news that it was this fight for Ryan to go to school, but the number one priority in our life was keeping him healthy. Second, was keeping my job at General Motors, because we had great insurance and it paid for all his medical bills. And the third part was my daughter Andrea, keeping us together as a family.
At first, it’s like, “Why?” Everybody wants to know why. Why wasn’t he given a miracle? All my life I was taught if you pray hard enough, if you believed hard enough, that you would get a miracle and you could never doubt that, or you wouldn’t get one. I never thought Ryan was going to die. I just couldn’t quite understand that. I thought nobody had more people praying for them than Ryan did. I prayed, “Lord, wouldn’t it be nice to show this kid a miracle in front of the whole nation.” Everybody knew he’s lived with AIDS for five and half years. He’d been in and out of hospitals. He’s been blind twice. I mean, this kid had a heck of a life, why couldn’t he be given a miracle? When he died, it was like, “Why? What more could we have done?”
When he died, I was really taken aback. I started questioning my faith. I think that’s normal. I mean, I started wondering if there really is a God? How does God let things like this happen? I see people around me all the time asking that question. “Why do young kids have to die?” I mean, anybody really, lots of other good people have died too. So then I started trying to find reasons.
After awhile it started to get clearer. “Look at all the things he’s done in his short life. He’s educated so many people. Wouldn’t we all like to say we had accomplished as much as this kid did in only 18 years?!”
I tell the kids that when I get to heaven, I’m going to be angry. I hope the Lord forgives me for being angry, but I’m going to say, “Why did you have to take Ryan?” Then I say, “You know what I think he’s going to say? He’s going to say, ‘You know what, he was only supposed to live three to six months. I gave you five and a half years, and you’re still not happy.’” Maybe I got a miracle. We had quite a few Christmases that we never thought we were going to have.
I didn’t want to lose my faith. I was mad at my faith. I was mad at my church. I was mad at my religion. I was mad at God. But I wanted to find a reason. I eventually started seeing things around me like the Ryan White Care Act and Elton John go through rehabilitation and get off of drugs and alcohol, and I thought, “My goodness, Ryan touched more lives than I ever knew. Perhaps those people got miracles, and they don’t know it.”
Michael (Jackson) was a real good friend of Ryan’s. When Michael called Ryan in the hospital once, Elton said, “With all the money that’s in this room, we can’t bring this boy back to life.” That was a real big realization to Elton . . . That he had all the money in the world, he had everything he could ever buy, but he could not buy his health. That’s why he entered rehab. When Michael called me after Ryan died, just to see how I was doing, I said, “I’m doing OK but what made you and Ryan so close?”
When Michael would call, they would have long phone conversations. He said, “You know, most people can’t get over the awe of who I am, so nobody can ever act normal around me. Ryan knew how I wanted to be treated because that’s how he wanted to be treated. I can’t trust anyone because everybody always wants something from me.” He could tell Ryan anything, and Ryan wasn’t going to go blab it or tell it, you know. “I promised Ryan he could be in my next video and now that he’s gone I want to do a video for him.” He made a video called Going Too Soon, which was about Ryan.
It’s hard to talk about death. I didn’t want to talk about it because I didn’t really think he was going to die. I can remember him saying what he wanted to be buried in. I told him I really didn’t want to talk about it but he went on anyway, “I know you like me in a tux but I don’t want to buried in one.” I said, “OK, Ryan, what do you want?” I mean, it’s like, I’d say anything to get this conversation over with. He says, “I want to be buried in my Guess jeans, my red T&C (Town and Country) shirt, my Air Jordan’s and my Jean Jacket.” He pauses, as I’m fading out, then says, “You know how people are when they’re lying in a casket, and everybody is watching their eyes to see if their eyes move? I want my sunglasses on, and I want to be buried in my boxer shorts.” “Your boxer shorts?” I exclaimed. He’d just switched from wearing briefs to boxer shorts and really liked them. “Why your boxer shorts?” I deadpanned. “You know that hernia I got? I want to make sure I . . .” He had a hernia that they couldn’t operate on because he had no platelets. “I want to make sure I’m comfortable.” And I thought, ‘Well, if you’re dead, I mean.’ “OK, just talk,” Ryan said. “You know, as a mom.”
One of the best things, after Ryan died, was when people talked about him. I think it was also good for me to get involved in something I truly believed in, doing something, instead of sitting at home feeling sorry for myself. That’s the easy way to go . . . Feeling sorry for yourself. People didn’t let me, although that’s what I probably would have done if not pushed. But people were always talking about Ryan and people still do and that kind of keeps him alive within me.
Excerpt from Don’t Just Sit There, Do Something! Grief’s Wake Up Call.