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First Person: Jane Fowler

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Jane in 1957

Jane in 1957, shortly before receiving her Bachelor of Science in Journalism from the University of Kansas.

Jane Fowler on July 4, 1982

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

Mature Woman With HIV Feels Shunned by Her Own Community
From AIDS Project Los Angeles

More on NAHOF

Over 50? National Association on HIV Over Fifty Advocates for You
From AIDS Project Los Angeles

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?

"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."
The way I've dealt with it is by not becoming involved. In the early days, after I learned of my infection, I had no desire for a relationship of any kind with a man. Because at that point so few people knew, I suppose I feared that if I did develop a relationship [my HIV status] would come out and that would be difficult. Now I'm busy enough that a relationship is not something I take the time to pursue. If someday, someone were to come along ... I don't know. I haven't ruled this out, but right now there isn't anyone.

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 jane@hivwisdom.org.

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See Also
More Personal Accounts of Women With HIV/AIDS

Reader Comments:

Comment by: Jane B. (Australia) Thu., Aug. 25, 2011 at 9:18 pm EDT
Hi Jane

I am impressed by your story and I would like to provide a support service locally for women and families affected by HIV.Some tips would be helpful.

Regards Jane
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Comment by: Ellen (New York) Wed., Mar. 23, 2011 at 9:17 am EDT
Wow jane what a courageous story. I like your courge and your story means so much to others who now live with this virus. I pray that people with the virus will adopt your attitude for long life. Thank you. When you have God in you, you fear not the storm no matter what.
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Comment by: ginny (Ft. Walton Beach, FL) Sat., Dec. 4, 2010 at 2:33 pm EST
I am a high school teacher who instructs a unit on HIV/AIDS as part of the curriculum. Since I saw the article on you in USA Today in 2000, I have included your story in my presentation. It always has a huge impact on my students. I am so glad that you are doing well and still very involved in educating a society that has become complacent about a pandemic that is still very much a threat. You go, girl!
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Comment by: teresa (chicago) Mon., Sep. 13, 2010 at 10:48 am EDT
My story is so very similar to yours. I had been with the same man almost all my life. we were married for 18 yrs. Right after our son was born my husband got sick. 4weeks in icu and a diagnosis of aids. They immediately tested me and our son. Thankfully our son was negative. I on the other hand was positive. I rarely drank didn't smoke or do drugs. I was a middle age middle class mom who went to church. To say I was stunned is an understatement. My husband had a hard time living with what he had done. I forgave him and God forgave him but he could not forgive himself. He died on his 42 birthday of alcoholism. It took him 10yrs to drink himself to death. A single stupid mistake changed our lives forever. Thanks for sharing your story. It has helped me feel less alone. lol
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Comment by: cain a. (bell, ca) Sun., Aug. 22, 2010 at 9:14 pm EDT
find ms. fowler to be an admirable human being.
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Comment by: mia (spain) Wed., Mar. 10, 2010 at 5:31 pm EST
Jane,you are my heroine, thanks to a blood donation, now I know that my life to changed, and seeing in others the life that I can have, it gives me forces to continue forward. Only two weeks have happened since I know it, but I am not capable of making suffer to my family, we are small and my father I make this one ill. Maybe, one day sits me so loudly as your. A very big embrace and thousand Graces
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Comment by: Rosalia N Shatilweh (Windhoek-Namibia) Thu., Nov. 12, 2009 at 4:51 pm EST
Being an energitic women, despite the fact that im Hiv positive, yet i feel brave and inspired by knowing my status, and looking forward to fight the battle no matter what the stuation may be, henceforth being a single mother with 2 daughters aged 23 and 18, the only challege i forsee perhaps is to enable their studies. And what im looking forward is to enter into relationship with a men who is also hiv positive for serious relationship.
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Comment by: Rose (Cameroon) Tue., May. 26, 2009 at 5:05 am EDT
DEAREST IN THE COMMUNITY OF WLHIV. IT IS A PLEASURE TO DISCOVER THIS WEB SITE. YOUR TESTIMONIES HAVE TOUCHED ME . PLEASE HELP ME TO COME OUT OF MY OWN SITUATION FOR IT IS A LONG TIME THAT I AM HIV POSITIVE . ALREADY ON TREATMENT.bACTUALLY MY PHYSICAL HEALTH CONDITION IS VERY GOOD BECAUSE I ACCEPTED MY SITUATION FROM THE FIRST DAY AND DECIDED TO BE ONE OF THOSE WHO WILL SURVIVE WITH THE VIRUS SINCE THEN 2002. I WAS VERY SICK AT FIRST SICK BECAUSE MY HUSBAND MADE TERRIBLE SCANDAL AFTER HE HAD SEEN ME AWAY. BUT MY FAMILY ASSISTED ME MORALY AND FINANCIALLY TILL THE TIME I HAD TO BEGIN THE ARV. MY DEAR THESE DRUGS ARE VERY HELPFULL TRY AND SEE. DONT WORRY U WILL ALSO SURVIVE AND LIVE LIKE I DO TODAY.
BUT ACTUALLY I AM 35 YEARS AND WANT TO START LIFE ALL OVER AGAIN. MEN NEED ME FOR MARRIAGE WHAT CAN I DO ? HELP
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Comment by: MIA (BALTIMORE) Mon., Mar. 16, 2009 at 4:47 pm EDT
Stephanie,
Your story is my story completley. I so wish you find some joy in life. I took had the same course with the bisexual man that brought this to me. let me know if you ever want to talk I wish you the peace of God that passess all understanding. YOu will survive as you have been.
take care
MIA
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Comment by: Alisson (MEXICO) Fri., Feb. 6, 2009 at 9:33 pm EST
jane eres un ejemplo de Vida a Seguir,no importa cuan grande sea la tormenta; ya que al terminar siempre habra un arcoiris de regalo para Sonreir y seguir adelante con la Bendicion de mi Padre Dios y la luz del Espirutu Santo, Un abrazo Bye,Bye
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Comment by: RKE (New York, NY) Wed., Oct. 22, 2008 at 1:37 pm EDT
Stephenie: I'm so sorry to hear that you are having a hard time. If you are looking for advice and some words of support, you might want to contact Jane Fowler. Her e-mail address is jane@hivwisdom.org.
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Comment by: RKE (New York, NY) Wed., Oct. 22, 2008 at 1:37 pm EDT
Stephenie: I'm so sorry to hear that you are having a hard time. If you are looking for advice and some words of support, you might want to contact Jane Fowler. Her e-mail address is jane@hivwisdom.org.
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Comment by: Janet (Uganda) Wed., Oct. 22, 2008 at 8:39 am EDT
Living with HIV/AIDS is a challenge and difficult circumstance to cope with. I tested positive in 1999 when pregnant. I never fell sick or had any serious opportunistic diseases such that with time I thought the results were faulty. It was only when I was pregnant again that I tested in 2 hospitals to confirm the first test result. I now use ARVs, Truvada and efavirenz. My health and CD4 have improved greatly, from 220 to 780.
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Comment by: stephenie (fort worth texas) Wed., Oct. 22, 2008 at 3:03 am EDT
This story brought me to tears. I am 51 and have been HIV pos since 1989. I got it from my husband, the love of my life. He was living a secret bisexual life. I was devastated, destroyed. We were married 14 years at the time with two sons.

I guess I just lost my mind for about six months and went on a suicide mission to end what i believed was the last days of my life. I left my beautiful home and my family to become someone i did not know. Many changes during that time. Bad things happened to me, that scarred me forever.

Now so many years later after losing my husband in 1994, just short of being married 20 years, i still seclude myself from my family and friends living in self pity, afraid to try to live. After two failed relationships I have just given up on finding love. I need help, a big push to keep going ... I have a wonderful family, great kids but my apartment and my dogs keep me from going out in the world. Living on SSI and raising my 15-year-old granddaughter that has been my life since she was born. Your story inspired me. How do you do it? Can someone help me live and feel like I'm not alone with this virus?
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Comment by: Seekyah Mon., Sep. 22, 2008 at 11:34 pm EDT
You are truly a blessing!
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Comment by: gayle d. Thu., Aug. 14, 2008 at 5:17 pm EDT
Hi, I have a great doctor in nyc, Dr. Glesby, and I am inspired by your story. You are a strong woman like myself. I had the virus for awhile too. but thinking positive and being positive works!
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Comment by: michele Mon., Jul. 21, 2008 at 3:32 pm EDT
good bless you, you are true inspiration. your story is so motivating for any one who is infected and for those who are not, may god bless for allpositve work
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