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Life Without Ryan : Her Son Is Dead, The Media Are Gone And Jeanne White Is Putting Her Life Back Together.

TIMES STAFF WRITER

Remembering her son’s funeral, Jeanne White has to smile despite the pain: “Ryan would have just thought that everybody was just nuts to go to that much trouble to see him. He would have looked down and just laughed at everybody waiting in all that traffic.”

More than 1,000 mourners--among them First Lady Barbara Bush, rock stars Michael Jackson and Elton John, TV’s Phil Donahue and Indiana Gov. Evan Bayh--came to Second Presbyterian Church of Indianapolis to say goodby to Ryan, who died April 8 after a five-year fight against AIDS and bigotry. Hundreds who waited hours in 40-degree temperatures and drizzle were turned away.

Ryan White had been an international celebrity, albeit a reluctant one. A hemophiliac, he was 13 when diagnosed with AIDS, contracted through a tainted blood product. Despite the hatred and abuse heaped on him and his family by the frightened people of Kokomo, his hometown, he fought for and won--in a landmark court case--the right to go to public school.

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A charismatic youngster, he just never gave up, despite debilitating physical setbacks.

“I wanted a miracle,” his mother says, “and I actually thought I would get that. Ryan always said, ‘If I live five years, I know they’ll have a cure by then.’ He lived 5 1/2 years, but we’re no closer, really.”

The end came 10 days after Ryan, who felt ill, and Jeanne cut short a Los Angeles visit and returned to Indianapolis. Ryan never came out of the coma that doctors at Riley Hospital for Children, Indiana University Medical Center, induced to give his frail body a rest while machines pinch-hit for his failing kidneys, liver and lungs.

There was a private burial in Cicero, the town of 4,500 near Indianapolis to which the White family had moved in search of a happier life after Kokomo.

The next day, the media turned its attention to the next big story.

And Jeanne White, 42, a woman who once had few expectations beyond her “dirty factory job” in Kokomo, and her surviving child, Andrea, 16, who had lived for five years in Ryan’s shadow, began rebuilding their lives.

Recently, Jeanne was back in the Los Angeles area for a 50th birthday party for Bugs Bunny, hosted by Athletes and Entertainers for Kids, a group that befriended Ryan and set up an AIDS education fund in his name.

In a quiet moment in her hotel room in Marina del Rey, she sat painstakingly sewing spangles on a pink and white costume for Andrea for the regional roller-skating championships in Chicago July 4. (With Ryan’s friend Greg Louganis watching, she placed second in her division, qualifying for the nationals in Florida Aug. 2).

A color photograph of a smiling Ryan is atop the television set in Jeanne’s room. It is one of her favorites, a copy of the one she pinned by his bed during his final illness so visitors could remember him as he was before AIDS bloated and jaundiced his body.

“I haven’t been doing so good,” Jeanne tells a visitor. She is a woman without pretentions; she expresses herself in the vernacular of a blue-collar worker from the heartland.

Los Angeles has brought back memories. She had gone to a shopping mall, as she had so often with Ryan, a mall freak. A teen-aged boy was yelling, “Mom, Mom!” and, Jeanne says, “I thought I was going to faint. I thought someone was going to find me and not know who I was. I really had a downer. . . .”

Jeanne White is just starting to chart her life after Ryan. “I’ll never be completely over Ryan, and I don’t want to be,” she says. But there are decisions about her own future to be made, bills and a mortgage to be paid.

She is on leave from her assembly line job at GM’s Delco plant in Kokomo, where she was a $15-an-hour stock chaser. Generous friends made it possible for her to be with Ryan during his last seven months.

“I’m off ‘til October,” she says, “and if I can, I want to make it on my own. I don’t want to go back. I just feel like I could be used more in AIDS education and AIDS projects than I can workin’ on a factory line. That’s not all I want to do with my life.

“I see so much more out there now, I see so much in this world that needs to be done, and I’ve grown so much as a person that I can’t see myself sittin’ on an assembly line any more. Not because I think I’m too good to work on an assembly line, you know. . . .”

With Ryan, she crisscrossed the United States and traveled to Europe.

She knows a lot about AIDS; maybe, she thinks, she could be a spokeswoman for AIDS education. “I’m not a publicity hound,” she says. “I just can’t see me out battlin’ for the spotlight. Ryan never did. I want to represent him the best I can without people thinkin’, ‘Oh, there’s Mrs. White again!’ ”

She did speak before the national PTA convention recently in Indianapolis. She was terrified. “I always know what I’m going to say, but I’m afraid of getting out of order and getting messed up,” she says.

Jeanne tells of filming a public service announcement for AIDS education while in Los Angeles: “I had it memorized, then I forgot the first word. If I hadn’t been Ryan White’s mother, I’d have been fired.”

She laughs and says: “I told them, ‘Call me when Roseanne (Barr) quits.’ ”

Ryan’s suitcase--still unpacked from that last trip to California--sits on his bed at home in Cicero. His room is as it was, with autographed posters of Kareem Abdul-Jabbar, Michael Jackson and Elton John; his monkey collection, and his director’s chair from the set of the ABC-TV movie, “The Ryan White Story.”

“I went through all his drawers,” Jeanne says, “hoping to find that extra little note, you know.” But there was none.

She doesn’t think he believed he really was going to die.

She remembers that the day Ryan died, Jackson, who flew in that afternoon with Donald Trump, kept excusing himself to go up to Ryan’s room at the White home. “The last time he stayed about an hour,” she recalls. “Michael asked me to keep the room the same.”

Jackson had given Ryan a customized red Mustang. Jeanne says: “We’ve thought about donating it to a children’s museum. It’s so unique, I mean, Michael got the fanciest stereo system, it’s just super-deluxe for a Mustang.”

When she is home, Jeanne visits Ryan’s grave each day. In May, a gray and black marker, designed by Jeanne and paid for by actor Matt Frewer, was placed there. It stands 6 1/2 feet tall and the epitaph reads, “Kid of Courage.” A photograph of Ryan is centered on an etched cross. There are quotes from Jackson, Elton John and Bayh. Ryan’s story is told, with a brief reference to the Kokomo fight.

“I wanted to design something that was not so sad,” Jeanne says. “I wanted everyone to know that he did have trouble,” but that he was not bitter.

Visitors leave flowers and little gifts, letters for Ryan and Jeanne. “I didn’t realize how many people would be crushed by his death,” she says. There is comfort in that, she adds, but “I hate it because (people with AIDS) don’t have anybody to look to now. As long as he was alive, they had hope.”

She has received about 50,000 letters since Ryan’s death, 80% of them from kids. Some wrote poems; she talks of having an anthology published, perhaps to raise money to fight infectious diseases. Another 75 people have sent tapes of original songs, hoping John might record them.

She is very protective of Ryan’s name. “When he died,” she says, “there was like all these people who wanted to have all these charity benefits--Ryan White Golf Tournament and all this.” She now checks everything out with her attorney.

Jeanne answers all the letters from people with AIDS, and, she says, “I spend a lot of time on the phone talking to parents who have kids with AIDS.” They all ask: “When are we going to have a cure so my kid won’t have to die?”

Her eyes tear and she says, “If you get it, it’s almost like a death sentence. The end result is always the same. But the end result for all of us is the same. That’s something Ryan knew, that we’re all going to end up the same place. Ryan said, ‘Some of us just get there faster than others.’ ”

Jeanne says, “All of Elton’s money, all of Michael’s money could not buy Ryan’s health. I think that’s the realization of AIDS.”

There were times, she acknowledges, when she wanted to scream, “It’s not fair.” She says: “Nothing’s worse than losing a child. It makes you feel like you’re going to choke. . . . Sometimes I think nobody could be worse off than me.” Then she reminds herself, “It still could be worse. I could lose Andrea, too.

“You’d think it would be consoling to know that other mothers have lost children, but it doesn’t help one bit. I still think, ‘Yeah, but they didn’t lose Ryan White.’ And that’s what every mother thinks.”

Ryan, she says, hated being called “the innocent victim,” a way some set him apart from homosexuals and intravenous drug users with AIDS. Neither she nor Ryan ever forgot, she says, that gays were among their first allies. “Ryan met a lot of gay people with AIDS. He saw what the disease did, and he didn’t want anybody to have it.”

Some people, she knows, resented the attention given Ryan. “Everybody said, ‘Well, you see all these gay people dying with AIDS, and you don’t see Michael Jackson and Elton John attending their funerals and being their friends. Well, maybe you don’t, but there were other aspects of Ryan that people liked. And if it took a kid to humanize this disease, what difference does it make?”

Jeanne White is a product of her time and circumstances. Born in Kokomo, she followed local tradition, starting at the GM plant after high school, marrying Wayne White, a GM employee (with whom she attended grade school) at 21.

They divorced when Ryan was 7. She does not talk about Wayne, except to say he has had no relationship with Ryan or Andrea, although he did attend the funeral.

Soon after the divorce, she married a fellow worker, Steve Ford. “I was ready to fall in love with anybody who came along,” she says, to escape her first marriage. She and Ford divorced in 1982. But, she says, they are “like sister and brother. Ryan would have loved to have had a dad who stuck by him, but his stepdad was always there,” even after the divorce.

“I haven’t dated in seven years,” Jeanne says, “and Ryan’s taken up the last five. I’ve just always been so busy raisin’ my two kids that I couldn’t ever think of havin’ a man around. Now I feel like I’ve got so much time I have time to take care of everybody.”

She is looking into adopting a child. “Ryan always wanted another baby,” she says, but, because of the danger of having another child with hemophilia, which runs in families, she wouldn’t risk having one.

“Nobody could ever take Ryan’s place,” she says, “but I just think there’s a lot of love there for me to give.”

Meanwhile, she is caretaker of Ryan’s legacy. She is on the board of the American Foundation for AIDS Research. She is helping a writer with a children’s book Ryan began the last year of his life. For ages 8 to 14, it is to be published by Dial Press and will have questions about AIDS, with Ryan’s answers.

Beyond that, she isn’t sure.

“It’s been so long since I’ve actually thought of myself,” she says. “AIDS becomes your whole life. You don’t want it to be, but you can’t focus on anything else because every fever, every spell of sickness. . . .”

Mrs. Bush, who also lost a child, has called Jeanne twice since Ryan died. Jeanne still wonders what, in her state of shock, she said to the First Lady when they were alone at the funeral: “It probably was dumber than a box of rocks.”

At home, Jeanne plants flowers, pastes clippings about Ryan in albums, takes 45-minute walks daily, “trying to lose weight.” She never watches television; she and Ryan used to watch every night in the family room, Ryan huddled by a portable heater. He was always cold; he dreamed of living in California, where he thought he might be warm.

Six days a week, Jeanne and Andrea drive to Indianapolis for skating practice.

“I feel she was neglected to a great extent” during Ryan’s illness, Jeanne says of her daughter, who has skated since she was 7 but “had to give up everything for two years because we didn’t have the money to pay for lessons. The last five years, even when I did work, I couldn’t make ends meet because I had to miss so much work.

“There were a lot of things she resented,” Jeanne says of Andrea. “Ryan was getting everything and she was not getting anything, and I didn’t have the money to make up the difference. . . . She’d say, ‘Where’s mine?’ She never thought Ryan would really die, and she’s having a hard time dealing with it now. She thinks, ‘Why did I ever say anything? Why was I jealous of him?’ ”

The family’s ticket out of Kokomo was the advance for “The Ryan White Story.” Jeanne laughs and says, “I knew that I would never have $25,000 again in my entire life. I knew if I was going to get out of Kokomo, I had to do it with that money.” That was in 1987.

She applied for a loan to buy the house in Cicero, but with her credit not being the best--"we counted pennies for milk"-- was told she needed $35,000. Elton John loaned her the difference. The house, which cost $92,000, has a $51,000 mortgage, on which she pays $1,000 a month.

There is $40,000--public contributions--in a fund set up at an Indiana bank for the family. It will, Jeanne hopes, ensure a college education for Andrea, who wants to be an air traffic controller or a pediatrician.

Contributions sent to the hospital toward Ryan’s bills will pay for what’s not covered by insurance, she believes. “We’ve been very, very fortunate,” she says, considering that Ryan’s final hospitalization cost “at least $200,000.”

At the end, Jeanne White was still hoping for that miracle.

“Ryan wasn’t ready to give up,” she says. “He said, ‘If I’ve got a chance, I’m gonna go for it. . . .’ ”

But AIDS had destroyed his vital organs. Late Saturday, April 7, his condition worsened. Before midnight, Jackson called from Atlantic City; he said he could be there in two hours. The nurses shook their heads; they didn’t think Ryan would last that long.

As family and friends waited in the intensive care unit, they watched a videotape of Ryan on “Prime Time Live.” He was asked if he would give up his celebrity not to have AIDS. He snapped his fingers twice and said, “Just like that.” That was the son whom Jeanne wanted to remember, not the figure in the bed: “That was not Ryan.”

“Everybody was cryin’ their eyes out,” she says, “but seeing that made me want to smile.”

About 2 a.m. on April 8, Jeanne stopped believing in miracles. “I’d seen the nurse open Ryan’s eyes and they were dead. They were awful. I knew then. . . .”

Jeanne was told Ryan had probably hemorrhaged and was brain-dead. But his heart had not stopped. “I felt like he was hangin’ on for me, doin’ it just for us,” she says, so she leaned over him and said, “Just let go, Ryan.”

She could hardly bear it. “Everybody sittin’ there, waitin’ for him to die, and Ryan just keeps hangin’ on and hangin’ on. . . . And you watch his heart go down more, more, more. . . . And you know his heart’s gonna stop. And you’re ready for this dinging noise (the monitor). It’s so horrible, oh, God. . . . And then they come in and shut off the monitor and inject him with something and his heart beat goes up. . . .”

It was then, she says, that John, who had returned from the Farm Aid IV concert in the Hoosier Dome, where he dedicated his song to Ryan, turned to her and said, “Jeanne, tell them you don’t want that done any more.”

“I asked the nurse, ‘Can I do that?’ and she said yes,” Jeanne recalls. “They say when you pull the plug that it’s inhumane, but if you’d been there . . . it was horrible. . . .”

There were no more injections. At 7:11 a.m., Ryan White’s heart stopped.

During her son’s last illness, Jeanne White found a peace of sorts. “I just didn’t want him to be in pain,” she says. “And Ryan did not want to leave the world being like he’d seen others with AIDS, skin and bone. . . . As long as Ryan had his looks, Ryan was a little bit OK with it.”

Once, he was down to 54 pounds. (AIDS had stunted his growth at not quite 5 feet; when he died, he weighed 92 pounds.) “No one realized how sick Ryan was the last seven months of his life,” Jeanne says. “For a while he looked like he was nine months pregnant,” bloated from fluid retention. “But he’d get up and take a shower every day, even when he was too sick to go to school. That would wear him out, just to get up and get dressed.”

Still, he kept going.

He had started getting better just before the last trip to California. He was pleased; he was going to look all right in a bathing suit.

Jeanne laughs and says, “The worst thing Ryan did when he left me was to leave me all his animals to take care of"--two dogs, a cat and Herbie the hamster.

For a week after his funeral, five young friends stayed at the White home. “Nobody wanted to let loose of Ryan,” Jeanne says. “They did everything, took out the trash, took the animals out.”

To them, he was always just Ryan, their friend at school.

The Ryan the public loved was the gutsy Ryan. “There is no way I could be as strong as he was,” Jeanne says.

It was Ryan who took on Kokomo, hanging in despite vile rumors, despite the vandalism that included flat tires and a bullet through the window of their house.

“I wanted to quit,” Jeanne says. “We had nobody on our side.”

But Ryan wouldn’t quit. Then one day, Jeanne says, “I just threw a fit with myself, just threw a fit. I thought, ‘Golly, even if I quit, is it going to be any better here for us? It’s not. They’re still scared to death of AIDS. Ryan is still not going to be welcome anywhere.’ ”

She says, “I can’t believe I was ready to sell my son’s life right down the drain. We knew we were right, but I was almost ready to give all that up just so they would like us. That’s no way to get people to like you.”

Now, she says, “Those people have to live with what they’ve done. But Ryan rose above all that. He made of himself a person the whole world loved and respected.”

She remembers Ryan, as a 4-year-old being treated at Riley Hospital for hemophilia, seeing children with horrible burns, children with monstrous malignancies, paralyzed children. He would say, “Boy, I’m just glad that all I’ve got wrong with me is hemophilia!”

Even after he got AIDS, she says, “Ryan would never complain about anything because he’d seen it all. He’d say, ‘There’s still people worse off than me, Mom.’ ”

Ryan White hobnobbed with stars. Jeanne White, in Los Angeles, takes a photo of Jeanne Crain’s handprints in the cement at Mann’s Chinese.

“I was named after her,” she says. “My mom just always envied Hollywood stars. I liked Ryan O'Neal, so my first boy, I named him Ryan. . . .”

She is no pseudo-sophisticate. In Kokomo, she says honestly, “I never read the paper, I never listened to the news. I mean, when you go to work in the factory, everybody just worries about what their neighbor is doing. . . . I guess I felt like Kokomo did, about gays, about everybody. . . .”

And AIDS? “I didn’t really worry about it,” she says, although Ryan was getting a blood product twice a week. Hardly anyone in Indiana knew anyone with AIDS.

About all she knew about AIDS was that it was fatal. She says: “I was worried about Andrea and me, I really was. I thought, golly, we drank after each other, we shared pop bottles. We got tested, like, six months after and neither one of us had it.”

She takes solace in believing that Ryan’s life, although short, was happy. Cicero embraced him and his family; buses brought hundreds of Hamilton Heights High schoolmates to his funeral.

And his courage touched people everywhere.

Jeanne says: “It takes a lot to come out and say, ‘I have AIDS. Please treat me normal.’ It’s so easy to hide.”

But, “if you’re educated on AIDS, you’re not afraid” of those who have it.

Educating others may be her mission.

“I was always worried,” she says, “that I would have to lose Ryan for everybody else to wake up.”


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