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How Nellie Oleson Became an AIDS Activist

How Nellie Oleson Became an AIDS Activist


Chapter Fifteen: A Change in the Relationship

I couldn't marry Steve Tracy (that gay thing kind of got in the way), but I did marry a friend of his sister. I met Donald Spencer in December 1984. He was twenty-two, like me. He told me a friend of his back in Florida, a girl named Cindy, had a brother, Steve, who married a TV character named Nellie Oleson. Small world, I thought. But Don claimed to have never once watched an episode of Little House.

Getting married seemed like a good idea at the time. I had gone through a whole parade of boyfriends, none of whom were exactly marriage material. With my childhood, I thought any guy who didn't hit me was "a good catch," and I tended to overlook things -- things like huge age differences, boozing, drugs, chronic unemployment, severe mental illness. Then suddenly it dawned on me that I wasn't a teenager anymore. My friends, like Melissa, were getting married. (She married Bo Brinkman after knowing him a mere six weeks.) I thought maybe I should at least consider it. Don seemed like a good possibility -- a guy who was classically tall, dark, and attractive, who didn't smoke, drink, take drugs, or run around with other women. He was an actor and a writer. He was hilariously funny. He could both cook and sew. He had lived through a terrible childhood but was getting his life together. And he was definitely looking to settle down. In fact, Don asked me to marry him on our third date.

I had to talk him out of it and urge him to slow down. Looking back on it now, the fact that I was dragging my feet should have told me something wasn't quite right. It all sounded a bit too good to be true. I should have listened to my instincts. But we married in the spring of 1989 in a big Episcopal church. I even wore white. Well, whitish. I didn't want my pals to fall out of the pews laughing and hurt themselves. So I went with a nice ivory, a shade slightly off of virginal white.

The whole time I was dating and engaged to Don, I always referred to Steve Tracy as my "other husband." In the years after we both left Little House, we stayed incredibly tight. It was as if our relationship picked up where Little House left off. We kidded around and told each other dirty jokes. We still could finish each other's sentences -- without a script. It was as if we never stopped being Nellie and Percival. Steve was my friend, my teacher, the confidant I ran to if I had a fight with a boyfriend. I needed him. He was the only constant in my crazy life, and I clung to him when everything else was spinning out of control.

I came home one day in 1986, and Steve had left a message on my answering machine: "Um, hi, it's Steve. Uh ... call me." Then he hung up.

I felt the hair on the back of my neck stand on end. It wasn't what he had said, it was the way he said it. He sounded like someone who was being held hostage with a gun to his head. It was the scariest message I had ever heard. Frantically, I tried to reach him. I called and called until I finally tracked him down. But when he answered, he said in a hushed voice, "I can't talk right now."

"Okay, fine," I replied. "Then we're going to play twenty questions, and you just say yes or no, okay?"

"Are you okay?"
My heart was now leaping out of my chest. "Are you being held hostage?" (I thought I ought to get that one out of the way.)
"Are you in some kind of trouble?"
"Physical, financial, or legal?" (I know. That wasn't really a yes or no question, but this was taking too long.)
"The first one."
"Shit! Are you sick?"
"Very sick?"
"Do you have cancer?"
"Sort of."
"What? Who the hell 'sort of' has cancer?"
Then he said, "I have to get off the phone now."

I knew this was bad. Really bad. I was on pins and needles, waiting for Steve to call and fill me in. But he didn't. I knew he wasn't playing games or purposely trying to give me a nervous breakdown. Steve wouldn't hold out on me. So I figured he was sorting it all out, and I gave him some time, although it was torture. He finally surfaced a few days later and explained that he had been diagnosed with cancer and had freaked out. He assured me it would be all right; he was getting treatment. But I knew he was lying his face off. I knew him too well and loved him too much not to know.

Yet he desperately wanted me to believe everything was going to be fine; he needed me to believe so he could believe it, too. So I never contradicted him -- if he smiled and cheerfully told me the radiation treatment was working, I replied, "You betcha!" But deep down, I knew that wasn't so. He was a great actor, but it killed me every time I saw through it.

Finally, a year later, Steve fessed up. He had AIDS, and he was going on AM Los Angeles, a popular morning news program, to go public with his diagnosis.

"I wanted you to hear it from me, not on the news. I'm really sorry I lied to you," he said softly. He explained that he was trying to spare me the worry and the pain. He admitted he had known it was AIDS for some time, before most of his doctors, in fact. In the early 1980s, few doctors were very knowledgeable about AIDS, whereas Steve had kept up with all the medical research from the first moment the disease was even whispered about in the gay community. In fact, when he initially got sick, he had a sinking suspicion what it was. There was no blood test yet, so he went to doctor after doctor until he got a proper diagnosis.

I cried like a maniac at the news. He went on about fighting it and experimental treatments. He tried to reassure me, telling me not to be so upset, that "it wasn't really a death sentence." But the reality was that the average life expectancy for someone diagnosed with AIDS in 1986 was nine months. There was no "drug cocktail" to suppress the virus, no combination therapy, no protease inhibitors or any of the medical advances we take for granted today. Good Lord, there wasn't even AZT yet. People with AIDS didn't get better. I was going to have to watch my friend die.

I told him I would be brave, but when I hung up the phone, I lay on the bed, facedown in the pillow, and screamed and screamed.

I was twenty-four years old. Both of my parents were still alive, I wasn't old enough to have lost friends in Vietnam, and I was born in an age when epidemics like diphtheria and polio were distant memories. Death was something that happened to very, very old people. Not your friends. Not people you depended on. And I was already in mourning -- I had lost Auntie Marion the summer before.

Marion had liver cancer. She remained very brave and dignified, right up until the end. When the medical transportation service came to take her to the convalescent home, she sighed and said, "Well, I guess I'd better go shave my legs." She had already done her hair and didn't want any part of her looking unkempt when the nice men loaded her into the ambulance. She refused to have a private room. She though it presumptuous, and, besides, she loved to talk to people. She remained beautiful; her skin was so perfect that staff at the facility would ask why this much younger woman was sharing a room with those two old ladies. She was seventy-seven.

Ever polite and considerate, on the day she died she waited until the senior nurse came on duty in the morning. She looked up, smiled, and said, "Oh, good. You're here." She then closed her eyes and stopped breathing. She wouldn't have thought it right to die in front of young trainees; it might upset them.

As much as Marion had tried to prepare us, I was devastated. The person I could count on to know right from wrong, who had taken such good care of me all those years on the Little House set, was gone.

Now Steve. He was more than my friend. He was also a mentor and protector. He gave me great confidence as an actress. Like Katherine MacGregor, he, too, had studied acting extensively, but rather than telling people what they were doing wrong, Steve took great pleasure in letting me know when I had it right. He was nine years older, but he treated me as an equal. When he was just starting out on Little House, a reporter asked him how it felt to play opposite a girl of no more than seventeen. The guy was digging for dirt. But Steve had nothing but good things to say about me: I was a breeze to work with, and I had impeccable comedic timing. He didn't have to say that. Neither I nor my publicist was in the room, and I wasn't going to get him fired. But he said it anyway, and he told me he really meant it.

Steve was thirty-two when he was diagnosed with AIDS. The idea of anyone dying at thirty-two struck me as obscene. And for it to be my friend was downright unforgivable. He kept telling me not to, but I cried every day.

Steve didn't cry -- at least not in front of me. He was not just brave, he was noble. He let the doctors experiment on him, and he agreed to be part of a radical new study, which required him to jam needles filled with experimental drugs into his thigh. He told me that most people had quit this study because the treatments were so excruciatingly painful. But he said he didn't mind the pain. The doctors might find a cure, and even if it was too late for him, he could be saving someone else's life down the road. His courage and compassion floored me. If the tables were turned, I don't know that I would have the strength, stamina, or stomach to do what he was doing.

And then the National Enquirer called -- they had gotten wind of what was going on. Was it true about Steve Tracy having AIDS? How long did he have to live? How'd he get it? And the best one: Did I have it? After all, I had kissed him on TV. I was now in the "Linda Evans position": When actor Rock Hudson's AIDS diagnosis was revealed, people thought Linda Evans -- who was kissing him constantly on the soap opera Dynasty -- was in danger. I couldn't believe how ignorant most people were about AIDS. You couldn't contract it from kissing; you couldn't catch it if someone sneezed or coughed on you. It was blood borne through sex, needles, and transfusions.

Steve educated me day by day. Just as he had been my mentor and teacher in life, he was going to keep up the job while he was dying. At first, I was afraid to be around him if I had a cold. I thought his immune system was so fragile, he would pick up any germ -- and that it could be fatal.

"Relax, will ya?" he said and laughed. "I'm not the Boy in the Plastic Bubble."

I went with him to the doctors, to "healing workshops," to candlelight vigils. We even checked out a Louise Hay workshop. Louise Hay was a cancer survivor who had written the book Heal Your Body about how positive thought patterns and meditation could affect one's health. The AIDS community embraced her teachings. They were faced with a terrifying disease that the doctors barely understood and could offer no cure for. Happy thoughts had worked for Louise; she was cured. People with AIDS wanted to believe this course of treatment could cure them as well.

Louise Hay's meetings were usually held in church basements or public recreation rooms in West Hollywood. They were insanely popular, and the attendees quickly dubbed them "Hay-Rides" for their cheery, upbeat atmosphere. I was highly skeptical of such things and feared they might only offer a big dose of bogus "faith healing" nonsense. Steve insisted I go with him. "I promise, you'll be surprised," he said.

The recreation room at Plummer Park in West Hollywood was packed. There was a giddy feeling in the room like before a revival tent meeting, so my skepticism continued. It didn't help that many of the longtime attendees were desperately ill. I was surrounded by people in wheelchairs, people whose friends had carried them in on stretchers. Some were even walking around with Hickman ports, the permanently attached tubes that deliver medicine through a hole cut in the patient's chest. What on earth did these people think Louise Hay could do for them?

When Louise walked onto the stage, the crowd went wild. She was a beautiful woman, with blond, almost white hair and porcelain skin. The meeting began with a lot of very churchlike meditation, repeating of affirmations, and whatnot -- all stuff that confirmed my suspicion that this lady was really full of it.

And then she spoke. After a few opening remarks, her beatific smile disappeared, and she became serious. "I have to talk to you about something," she said quite sternly. She explained that, to her great disappointment, people were claiming that she could magically "cure AIDS" and other diseases; that they no longer needed anything from their doctors; that they could throw away their meds and just read her book. "Nothing could be further from the truth," she said.

She explained that she had, in fact, during her cancer, done everything the doctors asked her to do, even surgery. It was only when these attempts began to fail that she knew she needed something more. Meditation and beliefs by themselves were not sufficient, she warned. One must also take care of one's body in a concrete fashion. She explained that the instructions she was giving in her meetings were not just intended for the hour, but were meant to be used all the time -- in their diets, their medical treatment, their living conditions. Getting happily blissed out for an hour a week was not going to produce a miracle. Fighting diseases like AIDS and cancer was just plain old-fashioned hard work. In other words, the sweet, beautiful, sainted healer stood there and read us the riot act.

I turned to Steve and said, "She's fabulous! Why didn't you tell me she was like this?" He replied, "Well, I did say you'd be surprised, didn't I?" We gave her a standing ovation.

For the record, Louise Hay is still alive and well, and so are some of the people who went to her workshops. Just not Steve.

No matter how bad the disease got, Steve insisted on being self-sufficient. Even though his mother and sister flew in to be by his side (a rare occurrence back in the 1980s, when parents routinely abandoned their sick and dying children out of fear or prejudice), he would only let them do so much. I asked him what I could do. He explained the "volunteer schedule" he had worked out: "Well, I've got a guy from the AIDS Project Los Angeles Buddy Program coming over. He helps me with a whole bunch of stuff and even takes me to the doctor. The maid's still coming to clean, and what with APLA and Project Angel Food, I've got no problem getting food delivered. Oh, then there's this poor guy they sent over from Shanti, but he's a complete idiot. So I make him do my laundry."

What was left for me? Steve thought about it for a few minutes, then decreed I would be "the goodtime girl." I would hang out with him; we'd go to dinner and the movies. My job was to continue to help him enjoy life. I liked my assignment.

Through it all, Steve never lost his sense of humor. He even taught me a few AIDS jokes, including this one:

So this woman goes to a nutritionist and says, "Can you help me? My son has leprosy, bubonic plague, and AIDS. Is there any diet that will help?'"

"Leprosy, bubonic plague, and AIDS?" says the nutritionist. "Let me see ... Okay, we're going to start him on a diet of pizza and pancakes."

"Pizza and pancakes?" asks the mother. "How interesting! Will that help?"

"I don't know," says the nutritionist, "but it's the only thing we can slide under the door."

Though it was meant to be funny -- and it was -- this joke accurately captured where people's heads were at when it came to AIDS. Fear and misinformation were rampant, and AIDS patients were looked upon as lepers. I couldn't believe the stuff people were asking me -- about toilet seats, mosquitoes, all sorts of silliness. And they were people who should know better: not just other actors, but everyone from my best friend's aunt in Boston, to tabloid reporters, to reporters from so-called legitimate newspapers, even friends. For some reason, I was suddenly a noted authority on the subject. But why me? Who cared what I had to say about it? I was an actress, not an epidemiologist, for Christ's sake. And then I remembered the scene from one of my all-time favorite movies, Network. TV news anchor Howard Beale, played by Peter Finch, has cracked up and thinks he's hearing the voice of God when Ned Beatty's character tells him why he wants him to carry his message. He says, "Why me, Lord?" And the answer is: "Because you're on television, dummy."

So, I thought, all right, if everyone's going to insist on getting their medical news from somebody on TV -- namely, me -- what if I did something totally crazy, like providing correct, possibly life-saving information? So I went to AIDS Project Los Angeles and signed up for hotline training, which consisted of weeks of classes with homework and a five-page final exam. I had hated school, but now I was finally studying for a reason.

I more than passed the final exam; I got the highest score anyone had gotten on it. I not only worked the phones but also wound up at the food bank, the hospice, and ultimately the speakers' bureau. I was sent all over Los Angeles to speak on AIDS and HIV--schools, offices, even prisons. Many of these had turned away AIDS speakers before. They didn't know them, they were strangers, and they worried--crazy as it was--that they'd bring AIDS with them. But they knew me. I had been in their living rooms. I wasn't a threat; I was a TV star. I'd sign autographs, I'd quote Nellie-isms, I'd do whatever they wanted--as long as they listened to me and wised up about AIDS.

Skeptics said I wouldn't keep up my activism for long. "They always quit when the friend dies," the old-timers at the organization said. I didn't even allow that thought to enter my mind. I wasn't blind--I saw that Steve was getting worse. He looked so pale and gaunt, as if a strong breeze might blow him away. We both knew the end was coming, though we never discussed it. Good-time girls don't talk about dying. That wasn't in my job description.

Then one night in November 1986, Steve called. He told me what I had been dreading for several months: he had very little time left, and his mother and sister were coming to take him home to Florida. He wanted to die at home. I was inconsolable. I wanted to rush to his side and keep him here with me. I thought if I could just hold on to him, I could stop death in its tracks.

But then Steve said, "Don't worry, this isn't the end; it's just a change in the relationship."

Less than a week later, on Thanksgiving Day, Steve Tracy died. I didn't get the call from his family until a few days later. But I already knew. I was heading home from Thanksgiving dinner at my parents' house, when Donald and I stopped for gas. It wasn't terribly late, and we weren't in a particularly bad neighborhood, and yet I was suddenly hit by the most overwhelming sense of danger.

When Don got back in the car, I said, "I think something's happened." He didn't dismiss this feeling. He sensed it, too. We drove home in silence. So when the call came from Steve's family, it wasn't a surprise.

Steve's death was very hard on his mother and sister, who had stood by him through his illness, even though they lived in Tampa, Florida, a city that was not exactly what you would call enlightened about the AIDS crisis. When he died, their local funeral home refused to cremate him. They wouldn't take the body. Nor would the next place his mother called. Or the next one.

We'd had trouble like this in Los Angles, too. The AIDS hotline even made a list of funeral homes you could call that knew that you didn't get AIDS from preparing a dead person for cremation. But Steve's mom wasn't in Los Angeles. She finally found a funeral home that would help her: the one funeral home that took people who had died of AIDS was the only African-American-owned funeral home in town. Having been the target of discrimination and hatred for so many years, back to the days when white-owned funeral homes wouldn't touch the body of a black person, its owners understood what it was like to have someone tell you that you can't bury your loved one, because "we don't serve your kind."

After they got him cremated, Steve's mom and sister brought him back to L.A. They fulfilled his final wish and scattered his ashes under the Hollywood sign. If you're ever looking up at it, that's Steve, right there under the D.

There was a small memorial for Steve at the home of a friend of his. His mom and sister got to meet their now famous son's Hollywood friends. Melissa Gilbert and I stood in the kitchen drinking wine from plastic cups and toasting Steve's memory. He was the first of our Little House cast to die before his time. We didn't know then how many more we would lose.

Despite the old-timers at AIDS Project Los Angeles' predictions, I didn't quit when Steve died, and I still haven't. Instead, I've spent the past decades working with different AIDS organizations all over the country. I eventually met my soul mate, my second husband, Bob, through my activism, and I made a couple of hundred best friends along the way. Of course, I lost most of them to the disease, but I still see all of their faces--and hear all of their voices--clear as day. Steve's is the brightest and loudest among them. And he has all the best lines.

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