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
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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 email@example.com.
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