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Jane Fowler on Living With HIV in Her 70s -- And Not Dwelling on It

August 1, 2013

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What other kinds of work do you do now?

I was a staff member for 11 years at Southwest Boulevard Family Health Care, working 10 hours a week as founder/director of HIV Wisdom for Older Women. But that employment ended December 31, 2011. Yet, I wasn't ready to retire. I wanted to continue the work I’d been doing. I was very fortunate to be invited back to where I had started out in 1995. I am back at Good Samaritan Project, the oldest AIDS service organization here in Kansas City. What I'm doing at Good Samaritan is also 10 hours a week.

One idea was that I’d get out more in the Kansas City area/community with presentations. So, after giving out-of-town talks in spring, 2012 -- in Colorado Springs, Palm Springs and a D.C. suburb in Maryland -- I began local work. I went to a hospital for a "lunch and learn” program. There were residents and interns, and a couple of MDs and nurse-practitioners in the audience. They knew about HIV, but that was not their specialty. They had asked Good Samaritan to send someone who could explain what our agency offers, so if they had any clients they wanted to refer to an AIDS service organization, they'd know where to send them.

"I went everywhere: schools, churches, corporate places. I was everywhere. One month, I think I gave more than 30 speeches."

I thought, before I went, about what I was going to say. I could list all our services. They're about the same as any AIDS service organization, right? But what was going to make it different? I decided to share a very shortened version of my story, so that they would realize why I felt so keenly about Good Samaritan. Because Good Samaritan is where I took Red Cross speakers' training, and then coordinated our agency's speakers' bureau from 1995 to 2000. I gave a lot of speeches in the community. I went everywhere: schools, churches, corporate places. I was everywhere. One month, I think I gave more than 30 speeches.

Now, mind you, this was still a little early in the epidemic, a little early in the public understanding of what HIV is. You're not going to get it from mosquitoes, and all that kind of stuff. That was why the speakers' bureau was originally started -- to go out and tell the public in Kansas City what HIV was. But that was just general information. It was certainly not specializing in, or trying to reach, older people, necessarily, except that when I'd finish talking, especially in middle school -- even the first years of high school -- I'd thank the young people for listening and I'd tell them that I hoped they would take my words to heart and that they'd leave their class that day and they'd think about this, and they'd talk to their peers and their siblings about this. And I'd say, "And, of course, talk, too, to your parents and grandparents -- oh, yes. They're having sex."


So that was a surprise to the kids, learning that their grandparents might still have sex. They couldn't hear that.

Occasionally, I think a teacher would say to her class: "Now, let's please write a letter to this nice old lady who came out and talked to us" -- at least, I hoped she would say nice old lady -- "and tell her what you learned" -- and I'd receive these letters. My favorite letter was very short:

"Dear Jane Fowler: Well, I sure never knew anybody over 50 had sex."

That was my favorite. That's just about all she said, this young girl.

But there was a community when I first was interviewed. Because I was doing all that, plus Good Samaritan was paying me for 10 hours of work a week for the speakers' bureau. And, with Nathan Linsk, I was co-chair of the National Association on HIV Over 50. So that was quite a community in putting this together. We did some national conferences, and each one grew in size. I got more involved in HIV Wisdom for Older Women. You know, there are many, many area agencies on aging. Every state has more than one area agency on aging. And I did a number of those presentations, trying to educate the older people -- or to educate the people running these agencies, so they would understand that some of their clients ought to know what's out there today. [Editor's note: Read "A Wake-Up Call on Safe Sex," an article that Jane wrote in 2007 for Aging Today, the newspaper of the American Society on Aging.]

"I think that is what is the hardest for me: talking to women who are like I was -- so naive, and just figuring that this couldn't be happening to them. Yes, it can! You just don't know who's doing what."

I think that is what is the hardest for me: talking to women who are like I was -- so naive, and just figuring that this couldn't be happening to them. Yes, it can. Yes, it can! You just don't know who's doing what. And I don't care how long you've been with the person; you don't know. I was the last one to find out that my husband had found someone else. I didn't think that would ever happen to me. That's one part of my standard presentation that I feel bad about having to give. But I go ahead and give it. I say that I was as surprised as anybody when my now ex demanded a divorce so he could trade me in for his much, much younger paramour. Then I say, "But shit happens."

And then one day somebody wrote on an evaluation, "Well, I do wish Mrs. Fowler hadn't talked like that."

Sometimes it takes strong language to talk about things that are challenging to talk about.

And I say to the older men, "Now, if you can get it up, cover it up."

How has your health been in recent years?

Excellent. I have been undetectable since 1996. Isn't that when the drugs came out? Yes. And my T cells went up to 1,000 about a month after starting triple-combination therapy -- that's what it was called in the very beginning. They're rarely at 1,000 anymore, but it's my understanding that older people lose some T cells anyway. It doesn't have anything to do with HIV.

I'm on simply two drugs in the morning. I take Truvada (tenofovir/FTC), however you say it, and Viramune (nevirapine). That's all.

Have you been happy with that regimen?

Well, this one is relatively new. I used to take Viramune and Combivir (AZT/3TC). In 2012, after 20 years with the same provider, I found a new provider who said, "You're taking Combivir? Oh, Jane, we don't use that anymore, except for pregnant women. They take it until they deliver a healthy, negative baby." That's what she told me.

Your new provider immediately switched you onto the newer medication, Truvada?



Is there anything that you do to keep healthy, or that helps you feel healthy? Do you exercise? Do you eat fruits and vegetables?

I don't exercise and I should. I know that. I have adopted a very healthy breakfast. I have discovered Greek yogurt. Every morning there's Greek yogurt, covering up whatever fresh fruits are available. Actually, I've had blackberries all winter. I've had blackberries and yogurt, and it's now blackberries, strawberries, watermelon ... whatever fruits are available. Oh, and then I also mix in dried cranberries, dried cherries, walnuts and almonds. And that is what I mix up every morning.

That's relatively new. That's like four years, maybe. And when it started out, it was just nonfat yogurt. Then suddenly, Greek yogurt was in Time magazine last year, that one brand that we're all using. I figure, if Time magazine is promoting the Greek yogurt, that it must be everywhere.

Also, at the end of January 2012, on Thursday the 26th, I was getting my hair done, which I do regularly. I'd been shampooed and roller set and dried under the dryer and combed out, and I felt very good. The stylist had gone on up to the desk to prepare my ticket for me to pay. I turned and got out of the chair, and apparently I caught the handles of my purse on the chair next to the one I was sitting in ... and, well, I took a tumble.

I had a crack in the hip joint: not a fracture, not a complete break. I was just so crazy about my orthopedic surgeon, who went in and put three pins in my hip -- it took about an hour. I had the surgery on a Saturday. On Monday afternoon, late, I was moved out of the room I was in to the hospital's rehab unit. One week later, I was sent home. After I was home a few days, I went from a walker to a cane.

I have been blessed. I recovered from that. People ask me about it, and it's like it didn't happen ... Well, of course, it's not like it didn't happen, because I certainly remember it happened. I'm very cautious about how I step and where I walk, and all that.

Is there anything in particular that you do to keep a healthy state of mind?

It's the same as many years ago: I don't dwell on HIV. My advice to somebody would be to, of course, follow your provider's advice, as far as meds and that kind of thing. But get out of yourself and find another interest, or several other interests, so that you aren't consumed by HIV.

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This article was provided by TheBody.


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