Child, I haven't had sex in 40 years," says 64-year-old Lillian Cole, laughing unself-consciously. She's sitting in her wheelchair on the porch in front of the Don Bosco Senior Center, which faces a row of brick buildings in the historic Columbus Park neighborhood.
"I ain't missed it, either," Cole continues.
Don Bosco is a day center where disabled individuals and people over 60 meet for cheap lunches (the center requests a $1 donation), attend dance and exercise classes, play bingo and make new friends. Staff members estimate that they register as many as 600 regular visitors a year, most of whom take a special bus to and from the center. The people who pass time here — the men in high-waisted pants playing pool in the back room, the women gossiping in the lobby — aren't usually thought to be at risk for sexually transmitted diseases. But that might be changing.
Of the 138 new cases of HIV reported to the Kansas City Health Department this year, 11 of them have been people 60 years of age and older.
When it comes to the topic of sex among the elderly, Don Bosco Director Anne Miller doesn't blink.
"In less than 10 years, we've had six marriages," Miller says. Her center holds dances for its seniors on alternating Fridays. At the end of the events, she says, "We see some of the cutest couples leaving together. Sometimes one of them doesn't drive, so that's the excuse: 'I'm going to give them a ride home.' It's nice that people are enjoying each other's company in their later years."
Miller is proud that Don Bosco's seniors are examples of how it's possible to be active and happy in the sunset years. But medical experts are afraid that when the "greatest generation" hooks up, it's without much thought about safety. Women who have gone through menopause might shrug off the idea of using a condom. And some of these people went to school in an era when schools didn't teach sex-ed.
But Kansas City has one globe-trotting elder who has made it her goal to teach seniors and health professionals that young people aren't the only ones who get HIV.
Jane Fowler loves jewelry. Two chunky bracelets rattle on her wrist. The 73-year-old wears youthful sandals and bold, bright clothing — reds and pinks and polka dots.
A decade ago, the North Kansas City resident was appearing on 20/20 and Oprah and being interviewed by People magazine.
"I didn't have an opportunity to really meet Oprah," Fowler says modestly, though she spent a few minutes sitting across from Winfrey. "I don't know what I expected. You fly into Chicago the night before, find a restaurant or eat in the hotel, then you go on the show and you fly home."
A producer for 20/20 followed Fowler all around Kansas City before flying her to New York to be interviewed by Lynn Sherr — the People reporter from the Chicago bureau came to Kansas City to watch Fowler address a group of people who met in a church.
Now Fowler treks around the country, giving talks at national AIDS conferences and telling a story that she has told thousands of times.
When Fowler was a young woman in Kansas City in the 1950s, she knew of a home for unwed mothers near the Country Club Plaza. "We used to see the girls walking around, and our mothers would say, 'See? You don't want to be like that.' Good girls waited."
Fowler was a virgin on her wedding night in 1959. Two years earlier, she graduated from the University of Kansas with a degree in journalism. She was hired as a reporter and feature writer at The Kansas City Star. There, she met her husband, who also was a writer. They had a son.
Fowler describes her life as charmed — until the day, 24 years later, when her husband blindsided her with the news that he was leaving her for another woman.
It was 1983. Fowler was 48. She had never imagined that she would be divorced, but soon she was living in an apartment near Crown Center. She started dating for the first time in a quarter century (her first date was within walking distance, at the American Restaurant). She wasn't promiscuous, Fowler says. She didn't go to singles bars. "I went out with men my age, who, like myself, had been married and were divorced."
Fowler concentrated on her career and on raising her son, Stephen — until she opened a letter from an insurance company on January 6, 1991. She was trying to switch providers and had taken a blood test. The insurance company had sent over a medical technician. At Fowler's dining-room table, the technician had pricked Fowler's finger for the sample. Trying not to look at the needle, Fowler had turned away to look out the window, focusing on the concrete tower of the Liberty Memorial. She sat at that same table to read that the insurance provider was declining her coverage, citing a "significant blood abnormality."
Within hours, Fowler was in her longtime physician's office. The doctor looked at a fax from the insurance agency and told her, "Jane, this insurance company claims your blood tested positive for HIV."
The news was incomprehensible. "Around that time, we'd barely started calling it HIV. We were beginning to hear about this AIDS, but this AIDS was just affecting gay men, so what did heterosexuals have to fear?"
Fowler hoped that maybe the insurance company had mixed up blood samples. She immediately sought a second opinion at the Kansas City Free Health Clinic. Workers there drew a vial of blood and sent it anonymously to Jefferson City to be analyzed. At that time, getting the results took an agonizing two weeks.
The Free Clinic confirmed the diagnosis.
Her impulse was to go home, get in bed and cry. "And," she says, "wonder what was going to become of me."
She couldn't stay in bed for long. For one thing, she felt fine. If it hadn't been for the insurance company's test, she never would have known that she had a deadly disease. So she started doing research. She learned about the acute primary stage of HIV infection, which produces flulike symptoms that last two to four weeks and then go away as mysteriously as they appeared. This stage marks the point of seroconversion, when the immune system produces antibodies to fight the virus.
"I thought, well, gosh, have I ever been sick? And then I remembered, very distinctly, in early 1986."
That period stood out not only because it coincided with her son's move to San Francisco but also because she was usually healthy and any illness was memorable. Fowler had driven Stephen, then 21, to the airport and then had gone to the doctor because she thought she had the flu.
Looking back over old medical records, she saw that she had visited her doctor five times in a three-week period in early 1986, complaining of fevers, headaches, chills, a stuffy nose, aches and pains, and breathing problems.
The timing meant that Fowler had already been living with HIV for five years.
Fowler wanted to investigate how she had become infected. She always kept detailed date books — 365 pages, a page for each day. She looked back to see what she had been doing in 1985, two weeks before her first appointment with the doctor for her flulike symptoms.
"It was New Year's, and I was with my friend," Fowler says. "That pretty well told me."
Fowler is evasive about this man. She uses euphemisms like "my friend" and "the man in question," saying only that she protects his identity out of respect for his privacy.
Fowler didn't confront him for another 14 months. When she did, he denied that he was HIV-positive. "The conversation was very short. He called me back about five days later. He was angry. He was angry that I had told anybody that I was HIV-positive. So that also tells you something. We had a lot of mutual friends."
But Fowler hadn't told many people of her HIV status — just her closest friends, her son and his fiancée. She told everyone else that she had retired, and she backed away from her social life. For the next four years, she lived almost as a recluse — reading, watching TV, eating too much for solace. She says, "I actually gained, rather than lost, weight." Movies, too, were a big comfort. As soon as she woke up each morning, she would grab the newspaper from in front of her apartment door and flip straight to the showtimes.
"I would seek out the earliest showing at the most distant theater. I would drive 45 minutes, if necessary, to escape my familiar environment and avoid encountering an acquaintance who might ask, 'Jane Fowler, where have you been, what have you been doing these days?' I wasn't about to admit, 'Waiting to die from HIV/AIDS.'"
Fowler changed physicians after she was diagnosed. Her longtime physician had never treated an HIV-infected patient, and Fowler didn't want to be her first. She heard about Dr. Sharon Lee, who runs Southwest Boulevard Family Health Care, a nonprofit "safety net" clinic with services for people without insurance. Lee had been recognized for her work with HIV patients. Lee put Fowler on a drug regimen that, at that time, included waking up every night to take a pill at midnight.
Fowler's lowest point came when Lee called her at home in early 1995 to tell her that her T-cell count was down to 300. (A healthy person's T-cell count is around 1,200. T-helper cells, as they're called, are pathogen-fighting white blood cells that are crucial to the body's immune system.) Fowler's son told her that he would move back to Kansas City from San Francisco, if necessary. "Temporarily," Fowler says. "Like, until I died."
Meanwhile, her "friend," the "man in question," died. Fowler wondered, If he's dead, how long do I have?
The prevailing wisdom at that time was that an HIV-infected person could live with the virus for about 10 years before getting an AIDS-defining, opportunistic infection, such as pneumonia, which can kill a person whose immune system is compromised.
Fowler had lived for nine years with HIV. She figured she had little time left.
To prepare for dying, Fowler did two things. First, she bought a camera and covered the apartment with pictures of people from various times in her life. "I must have had some kind of thought where, well, if I get sick and I'm in the apartment, at least I can look back. It was kinda silly."
Second, she started speaking out. It was March 1995.
"I didn't want to die just hidden away and not doing anything, not making any kind of contribution," Fowler says. "I thought, well, what could I do? Well, I could stand up and say, 'Look at this face, this old, wrinkled face. This is another face of HIV. It's not who you are, it's not how old you are, but it's what you do and don't do in regard to transmission.'"
Fowler started working at the Good Samaritan Project, an AIDS service organization. She had a knack for public speaking. But she remembers the amazed looks from middle-school and high-school kids when she would say, at the end of her safe-sex presentation, "Please remember this story, and when you leave the room, talk to your peers and your siblings about this, and your parents and grandparents.
"Yeah," Fowler would say. "Your grandparents are still having sex."
She remembers a high-school girl who stood up during one question-and-answer session and said, "Look, we all know we're going to die someday. And you're old. What's the big deal?"
Fowler says she resisted an impulse to slap her. "I said, 'Well, any person, even a person infected with HIV, wants to live on and on for as long as possible.'"
That possibility grew more realistic for Fowler when, in mid-1995, a new regimen of HIV drugs came on the market. Within a month, Fowler's T-cell count shot up to 1,000.
Fowler decided that she wanted to meet others who were infected with HIV and she began attending conferences. But she found few people who shared her circumstances and eventually joined efforts with Nathan Linsk, a gerontologist and professor of social work at the University of Illinois at Chicago, to form NAHOF: the National Association on HIV Over Fifty. Fowler and Linsk went to meetings all over the United States and to an international conference in Durban, South Africa, in 2000.
But Fowler still wasn't doing what she had specifically hoped to do: interact with older women who had HIV. Working with her doctor and her son and daughter-in-law, Fowler started a new program: HIV Wisdom for Older Women, with the aim of enriching the lives of those already living with the disease. Her main mission, though, was prevention.
"When I started the program, I had these grandiose ideas," Fowler says. "We'd have monthly conference calls for older women who were infected and needed to talk about where our lives were." But she didn't get the funding for those big ideas. And besides, she says, "So few seem to want to gather and talk about it — older women, that is."
Fowler runs into this problem a lot. She gets calls from women when they are first diagnosed — her phone number is printed as a resource on the back of a booklet that doctors give women when they get the bad news. But once people have settled into the reality of living with the disease, they don't necessarily want a support group.
"I think a lot of us find that we do better if we're not all that tied up in HIV all the time, or with HIV-infected [people] all the time, because then maybe that's all you talk about," she says. "I don't think about it anymore. I think about it when I take my meds ... but I don't go to bed at night thinking, Oh gosh, I have HIV. And I sure as heck don't wake up thinking about it."
It gets somewhat lonesome being the senior spokesperson for HIV. "I wish other older people could speak out," she says. She figures that when organizations need a speaker, they can always call her. She sighs. "I wonder if it's too much of me."
But she's not inclined to stop. "It's going to reach a point where I'm going to be too old.... Is it going to reach the point where I get up at the microphone and the points I want to make leave me?" That hasn't happened; until it does, there's too much work to be done.
Lee, Fowler's physician, still sees frustrating situations arising from misunderstandings about HIV and the elderly.
Recently, the family of a man with dementia was looking for a new nursing home and called Lee. At the man's previous nursing home, an aide was accidentally stuck with a needle while drawing the man's blood. Nursing-home workers tested the patient for HIV as part of a cautionary routine and discovered that he was HIV-positive.
"Now, his dementia very, very plausibly was connected to the fact that he had HIV, rather than Alzheimer's, which means it probably was treatable," Lee says. "However, the nursing home he was in no longer wanted to care for him once they found out he was HIV-positive."
Lee helped his family find better placement in Kansas City.
"But the family declined to treat his HIV," Lee says. "By that time, he was so demented that he couldn't make his own decisions ... so he died of HIV disease. Had we diagnosed him many years earlier so he didn't suffer from the dementia, which was very likely associated with HIV, things would have been very different."
In 1994, Lee founded the Hope Care Center, a 16-bed nursing home for people living with HIV and AIDS. At that time, Lee says, many nursing homes were hesitant to accept HIV- and AIDS-positive residents. That situation has improved, but things could still be better.
Lee believes that nursing-home operators exist in an atmosphere of "total denial" when it comes to older people having sex.
"There are laws in place to protect the privacy of people in nursing homes. They are supposed to be able to have privacy and, if they choose, to have sex. That's supposed to be a right, but it's really strongly discouraged.... I hear nursing-home administrators and other personnel talking about how to keep people apart, or that they're uncomfortable with the sexuality that's being expressed by the elders. I think that we have a long way to go before sexuality among elders is accepted."
Kansas City's rise in HIV infection among the elderly is in line with national trends. The Centers for Disease Control and Prevention report that in 2005, people 50 and older accounted for 24 percent of people living with HIV/AIDS and 15 percent of new HIV/AIDS diagnoses.
"So far this year, almost a fourth of the new HIV cases are in people 45 and older," says Jeff Hershberger of the Kansas City Health Department. "These are small numbers, but at the same time, it's a very significant increase because we hadn't been seeing that in this age group, and now all of a sudden we are."
Paul Showalter, the director of marketing at the Good Samaritan Project, remembers Fowler's early days of speaking with his organization, repeating one of his favorite one-liners from her talk: "If you can get it up, cover it up."
Showalter and his staff and volunteers most frequently encounter older audiences when speaking at churches. Showalter says one volunteer told him about a seemingly traditional, pillar-of-the-community-type woman who went up to the volunteer after a presentation — the woman wanted to get something off her chest. She had discovered her husband in bed with his best friend, and the presentation made her realize that he had put her at risk for STDs. "These are stories of risk by women who you'd never imagine were at risk," Showalter says.
With the introduction of drugs like Viagra and Cialis, Fowler's mission has become even more crucial. "It makes sense that maybe if someone hadn't been sexually active for a long time, they'd really be out to lunch on the realities of risk," Showalter says. "And things like Viagra are assisting people in getting back to sexual activity who hadn't been."
In Kansas City, few organizations are making a point of educating older people on the prevention of sexually transmitted diseases. One of the rare places where you might see a nurse standing in front of a white-haired audience performing the old condom-and-banana demonstration is at the Don Bosco Senior Center.
Glenn Miller-style music is wafting from the Don Bosco lunchroom, where tables have been pushed aside to make room for the Don Nelson Combo, a four-piece band with clarinet, trumpet, keyboard and bass. Couples clasp each other and sway politely while others look on from their seats, sipping fruit punch and ginger ale, at this noontime dance. One dancer, a gray-bearded man who wears his sunglasses indoors, says, "I like to come to the dances when it gets cold. You can get all close."
John Gillum, Don Bosco's director of administration, stops by to peek through the doors at the dancers. "Don't tell anyone we've got a Viagra dispenser back there," he jokes, pointing down the hall in the direction of the administrative offices.
These dances are serious business, Gillum says — the lunchroom can fill up with as many as 200 people if they see an especially swinging band's name on the calendar. One regular couple — not here this day — consists of a very tall man and a very short woman who wears high heels, short skirts, and a thong that becomes visible when she twirls. Gillum says that a lot of couples who have met at Don Bosco have gotten married. But more opt to shack up and remain single in order to save their Social Security money, which would decrease if they became half of a married couple.
Miller, the Don Bosco director, says that when nurses or nursing students visit and make health presentations on sexually transmitted disease and prevention, the results are favorable. "The nurses have done an excellent job speaking about, basically, safe sex. There is genuine interest. There is some embarrassment but genuine interest at the same time," Miller says.
Awareness is growing, but this is a population that might benefit from even more repetition.
One day, a woman named Dina, 58, sat in her wheelchair at the dominoes table at the Don Bosco Center with a half-dozen other women. Dina recently broke up with her boyfriend, Richard, after a two-year relationship. Richard was older — "a lot older" — than Dina, but she doesn't remember his exact age. Just because people get older doesn't mean they lose interest in sex, Dina says.
But do they use condoms?
"Nope," Dina says, reaching forward to play a domino. "Nope."
E-mail nadia.pflaum or call 816-218-6773
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