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First Person: Jane Fowler

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By David Evans and Bonnie Goldman

Jane

About Jane

Age: 73
Home: North Kansas City, Mo.
Diagnosed: January 1991
Click here and scroll down to view Jane's HIV medical history and updates!

For Jane Fowler, who describes herself as "the original 1950s good girl," HIV was something that happened to others. She didn't consider herself at risk, so testing positive at the age of 55 was a huge shock. Within months of her diagnosis, she retired from a lifelong career in journalism, becoming reclusive and withdrawn. But Jane is no longer hiding. Recognizing a need for awareness and support for older women affected by HIV, Jane formed HIV Wisdom for Older Women in 2002. The program's primary goal is to raise awareness that HIV infection can and does impact mid-life and older women. The program delivers prevention and outreach presentations nationwide to a diverse variety of audiences, and facilitates life-enrichment workshops for older women living with the virus. Jane considers herself a prevention educator, frequently speaking throughout the country (and several times outside the country) to increase awareness of HIV among the over-50 crowd.

Jane's story has been told, and her work described, on national radio as well as in print publications across the United States. She has also appeared on the Oprah Winfrey Show and other national television programs. An experienced traveler and a seasoned volunteer for many groups, she has a son, Stephen C. Fowler, a freelance writer and book dealer in Toronto, Canada; a grandson, Milo, born in October 2003; and a granddaughter, Matilda, born in March 2006.

Updated July 2008

JANE FOWLER LOVES TO READ about other peoples' lives. For her, heaven is a day spent lounging in her Kansas City apartment on her living room sofa, a juicy biography in hand. A bright yet modest woman, Jane would probably balk at the idea that her own life is a compelling story. At the age of 72, she is a mother, a grandmother, a retired journalist and a speaker of some note. She is also an HIV-positive divorcée.

Many women brought up in the 1940s and '50s, like Jane, were taught that if they played by the rules -- played hard, but fair -- they would be OK. Jane's early years largely confirmed this philosophy. She was a smart and pretty young woman who married an equally intelligent and attractive man. She was blessed with a beautiful and healthy son. In addition to being a mother, she was also an accomplished journalist for The Kansas City Star and Bon Appetit magazine, many years before working moms became commonplace. She lived, by her own definition, a "charmed" life, so nothing prepared Jane for the unexpected changes to come.

"Although Jane says that she never indulged herself with the question Why me?, she remembers being struck by the irony that she could become infected."
On the telephone, Jane is unfailingly polite and considerate, her voice soft and soothing. She seems like the kind of person in front of whom you wouldn't want to curse. Then she laughs, and her gentle, high voice deepens and crackles. You can tell by her demeanor that she is a woman who understands the bitter ironies of life. Getting divorced at the age of 47 wasn't something that was supposed to happen to her. Neither was getting infected with HIV.

Although Jane says that she never indulged herself with the question "Why me?," she remembers being struck by the irony that she could become infected. "I had been married for 23 years to the same man," she said. "I was monogamous. When we divorced -- a divorce I didn't want -- I didn't quite know what to do. The counselor I saw after the split kept telling me that I needed to 'get on with my life.' That meant dating, a challenge I did not welcome. What led me to try it was the thought, 'How am I going to have the kind of social life I enjoyed as half a couple?' During the next years, I dated a few men, none of them strangers. I didn't consider myself promiscuous."

In her intimate relationships, Jane saw no need to use condoms because, as an older woman, she knew she couldn't become pregnant. She had few sexual partners and knew them well, so she didn't fear sexually transmitted diseases (STDs). But, as sex educators and medical professionals have repeatedly stated for years, you don't have to be intimate with a lot of people to become infected with HIV or any other STD. It is the people with whom we are sexual, and the kind of sex we have, that matters. For Jane, who describes herself as "the original 1950s good girl," HIV was something that happened to others.

When Jane came home from San Francisco in January 1991, after a wonderful holiday visit with friends and her son, Stephen, she knew she'd have a stack of mail to sort through. Trading the relative warmth of the Bay area for a blustery Midwestern winter hadn't put her in the best frame of mind, so when she found a letter from a health insurance company to which she had applied for new coverage, she hoped it was a friendly welcome letter. Her first shock was in finding that she'd been denied coverage. Her second came with the statement, "Your blood test disclosed a significant abnormality ... we will notify your physician."

Though Jane was completely shocked by the news, she never kept her diagnosis a secret from her family and closest friends. "I'm not the kind of person who keeps things to myself," she said. "From the moment I opened that envelope at 4 p.m. on Jan. 6, 1991, I knew there was something seriously wrong; I immediately called Stephen to talk about it. My first thought was leukemia, because during the course of my volunteer work in the mid-'80s I had spent time with a little girl who had it.

"The next day, I telephoned the insurance company, and the underwriter told me that they would have to send the results of my blood test to my physician by mail, which I knew could take several days. When I became angry and upset, the underwriter offered to fax the results instead. Several hours later I was in my doctor's office. When I asked her what was wrong, she took my hand. 'Jane,' she said, 'this insurance company claims you've tested positive for HIV.'"

A couple of weeks later, Jane found herself in the office of an anonymous HIV-testing clinic, receiving the same news all over again. The test counselor told her, "I'm sorry, but your test did come back positive." Jane was stunned. She actually had HIV. It wasn't some sort of awful mistake.

Even with the support of family and friends, Jane found herself shutting down. Within months of her diagnosis, she retired from a lifelong career in journalism to reduce stress and protect her health -- or, at least, that was what she told her friends. "In truth, I withdrew because I didn't want to face possible discrimination, rejection, intolerance," she said. "I became reclusive over the next four years, spending much of my time in my apartment, alone, watching too much TV."

Jane is no longer hiding. Far from it, in fact. In 1995 she became inspired to fight back; today, she speaks publicly all around the United States about her experiences living with HIV. Her story is not just a cautionary tale to women and men who think they aren't at risk because of their age or their small number of sexual partners. Her story is also one of hope and the activism and volunteerism that have given Jane's life new meaning and purpose. Today she is director of HIV Wisdom for Older Women, a national program that she founded in 2002 and now runs out of Southwest Boulevard Family Health Care in Kansas City. She was also the national coordinator of the National Association on HIV Over Fifty (NAHOF), which she helped found in 1995. She travels around the country often, speaking on HIV prevention and conducting workshops to raise awareness and support for older people affected by HIV.

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