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. "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.
Jane in 1957, shortly before receiving her Bachelor of Science in Journalism from the University of Kansas.
Jane on July 4, 1982 in a Sonoma County, Calif. vineyard, where she was celebrating her 47th birthday with friends.Some of Jane's Articles
More on NAHOF
Click here for The Body's collection of articles about HIV in people over fifty.
So what finally brought you out of your isolation?
The need to do something. I lived in semi-isolation for about four years. I only shared what was happening to me with my family and a few friends. I just didn't have -- I don't want to use the word courage -- but I didn't have the confidence to be public. Then I decided that by remaining silent I wasn't helping myself and certainly not helping anyone else. Maybe I could make some kind of contribution by talking about my predicament? Maybe, by speaking out, I could bring a new face to the epidemic and offer a prevention message, especially for people in my age group.
Are you or were you connected with other people living with HIV?
Probably not as much as you might think. First of all, in the aging population there are fewer people, especially women, who are willing to admit that they are infected. Through my work, I have met other people of both sexes who are HIV positive and near my age. However, I don't generally spend a lot of time talking personally with anybody about HIV. Occasionally I'll get a call from someone who has read about me, usually a woman in a similar situation. We'll talk and say that we'll keep in touch, but then for some reason we don't.
You know, older people didn't grow up with support groups of any kind. They didn't exist. I think, for the most part, people in my age category are not comfortable with the concept. I, myself, am not. In fact, I disliked a support group that I attended for a time.
Was there ever a time when you heard, read about or talked to another person like yourself, who had shared your struggles and gave you hope or encouragement?
Not really. When I went public, I didn't know many others with HIV, certainly not any seniors. We in the aging community were still very isolated. I have great empathy and admiration for those older people who are able to be public and, perhaps, do prevention education work. Yet I want to be cautious and not criticize someone who can't speak out. I understand. I couldn't for a while. I can appreciate people who aren't comfortable [being public about their HIV status], but I have great admiration for people who can do it.
To be very honest -- gosh, I don't know how this will sound, but -- one way I live with this disease is by not concentrating on it. I spend more time with non-infected people than with those who are. When I'm with others with HIV, there's often a lot of discussion of the "down" side. If someone is having a particularly bad time, it's upsetting to me. Occasionally I've said in groups that we were getting too bogged down, focusing on HIV. Maybe it doesn't do us good to dwell on it so much.
Also, because I work in the field, I do have to set aside blocks of time where I'm away from it all, where I don't have to think about it. I often go to visit my grandchildren -- Milo was born in October 2003, and Matilda in March 2006 -- who live with their parents in Toronto, Canada. During those occasions there is no time to think about HIV; I am just a grandmother like any other grandmother. This is what keeps me sane. It allows me to do the work I do.
Not to focus on the negative, but we all have fears, and I'm wondering: What have been some of your greatest fears about HIV?
Well, of course, in the beginning my greatest fear was that I would die, and that I would die of AIDS. Yet, still today, I don't have AIDS -- I've never even had an OI [opportunistic infection]. When I first found out, I presumed that I would die within five years. I did start the antiretroviral drugs right away at the suggestion of my doctor, who is now one of my friends and a mentor. She believed in early intervention. This was back in 1991, so about all we had was AZT. In 1996, I went on the triple-combination therapy. By that time, my T-cells had gone down to the 300s, and that was frightening. Right around then, Stephen came back to visit me in Kansas City. After he got home to San Francisco, I received a wonderful call from him. He told me that he wanted me to know that if I ever got really sick and needed his help, he would move back home, temporarily. As for now, I guess my fear is that the drugs might stop working.
What are some of the other things you do to take care of your health?
[Laughs.] Well, I don't have a great exercise program right now. In earlier years, I was more involved. I did some jogging in the '80s and later began to do a lot of walking. Then, after I decided to go public, I just got too busy. It's not easy. Also [laughs], I don't have the best diet. I don't like fruits or vegetables. I never have.
For me, I guess, it's the attitude that I'm not going to let HIV get me down. My doctor once called it denial. Not denial that I have the virus -- I'm adamant about taking the drugs on time -- but that ... well, what she meant by denial is just not dwelling on it. Denying its ability to get me down; not obsessing on it. And I can say that much of time I don't think about the virus. Of course, I think about it when I take the drugs, but then it's become more like, "Oh, I've got to take these." This, for me, has worked. I get lots of rest and sleep. I'm very busy, but I enjoy going to bed early. There will be the occasional Saturday when I'll stay in my robe on the sofa all day with a good book.
How have you dealt with dating since you found out? Are you dating or in a relationship now?
Is there some wisdom or experience you've picked up along the way that you'd like to share with other HIV-positive folks?
Hmmm ... Look outside themselves. Consider, if it's possible, making some kind of contribution. I will not use the old expression, "when life hands you lemons, make lemonade," but I try to use the experiences that are painful or difficult to somehow bring something good out of those situations. My personal belief is that the persons with HIV who give up or ... I guess I'm thinking of a person who is full of self-pity and anger, thinking he or she is owed something ... those people are perhaps harming themselves and they don't even know it. Of course, I know that there are some people who are simply not going to survive HIV, or cancer for that matter, but what I hear -- in fact, I think it has been proven -- is that a person with an optimistic attitude is more likely to stay healthy longer.
Having a great attitude all the time isn't easy to do! I've never been angry [about how I became HIV infected], but I was much more cynical and negative in the past, and I've just learned how much more comfortable I am living with this disease by not being that way anymore. It works for me. Coming out as positive, doing the work that I do, has been extremely liberating and gratifying for me.
|JANE'S POST-DIAGNOSIS MEDICAL HISTORY|
|CD4+ Count (July 2008): 984 Viral Load (July 2008): Undetectable -- has been since 1996|
|Medications, Side Effects and Illnesses (chronologically)|
|Summer 1991: started AZT (zidovudine, Retrovir)|
|Developed recurring skin rashes*|
|Summer/Fall 1992: added ddI (didanosine, Videx)|
|ddI caused diarrhea, nausea; struggled with pill burden|
|Fall 1994: switched to AZT, ddC (zalcitabine, Hivid)|
|Spring 1996: switched to Crixivan (indinavir), 3TC (lamivudine, Epivir), AZT|
|Sept. 1997: switched to Crixivan, Combivir (AZT, 3TC)|
|Developed lipodystrophy (expanding waistline/mid-section); struggled with Crixivan pill burden|
|May 2000: switched to Combivir, Agenerase (amprenavir) (w/ Norvir [ritonavir] booster)|
|Developed diarrhea (became worse over time)**|
|Oct. 2001-present: switched to Combivir, Viramune (nevirapine)|
|* Skin rashes began appearing sporadically in 1991 -- primarily on the top of her lower arms -- and continued until Jane began HAART in 1996.
** Protease inhibitors are believed to be the cause of Jane's severe diarrhea.
Jane Fowler can be reached via e-mail at firstname.lastname@example.org.
Talk to women about HIV at The Body's Community Center.