Jane Fowler on Living With HIV in Her 70s -- And Not Dwelling on It
"Many diseases can't be prevented. But HIV can," says Jane Fowler. In the 20-plus years since she was diagnosed with HIV at age 55, awareness of the unique impact of HIV on older adults has grown considerably -- and the community has Jane to thank, in part, for that awareness. But her true passion lies in HIV prevention education. A renowned speaker and advocate for people, especially women, who are over 50 and living with HIV, she's been scandalizing teenagers since the mid-1990s with the information that, yes, their parents and grandparents do have sex, and need to know more about HIV.
When Jane was interviewed several years ago by TheBody.com, she talked about her work with HIV Wisdom for Older Women, the program she founded in 2002. Now, she shares more about her health; her community of family, friends and colleagues; the challenge of bringing together older women living with HIV; and how, for her, part of living healthily with HIV is not thinking about it too much.
What was your original vision for HIV Wisdom for Older Women?
My original vision was that, by speaking out, I would help prevent other older women from becoming infected. They would hear my story and realize: Oh, gosh, this could happen to me.
The idea behind HIV Wisdom for Older Women was to prevent infection in older women, and also to provide life enhancement for those living and aging with the disease. I thought I could do that by interacting with older women, and we could form some kind of loose conference call list. And once a month, we could talk to each other and exchange ideas and keep up with how we're doing, and all that.
It just never worked out. I would meet some women, or I would talk to them on the phone. They'd call me or perhaps I'd call them. We'd start to talk -- and I'm referring to women who had just gotten a diagnosis, who had lived for a while with HIV. They wanted advice, and I tried to be as helpful as I could. Then it was like, "Well, we have to keep in touch." But then we never did. I don't know whose fault it was, but we didn't.
I still think (and I may have mentioned this in the first story) that older people are not as likely to be involved in support groups as younger people. As I matured, we didn't have support groups for many things. Therefore, my contemporaries didn't come of age with them. There were, I guess, a few mental health support groups, but I just feel like now there is a support group for anything and everything. It just didn't work that way when we were young.
I was one of the founding members of the U.S. Positive Women's Network [now called Positive Women's Network-USA]. I will have to admit that I haven't really done a lot with the group because the other members all are so much younger than I am. I was the oldest person at the original meeting. Being so much younger, the women are so full of energy ... it just wears me out.
Unfortunately, the numbers of women who are over 50 and living with HIV are not getting lower. People, women, still want to find community. Is forming this kind of informal group still something that you're open to doing?
That would be fine! Yes, that would be fine.
I tried to figure out why the group hasn't stayed active; sometimes, I think, well, for myself, I probably do better when I am not fixated on thinking about HIV. And that could be true of others, my contemporaries. Now, there certainly are other groups. There's a group in Baltimore that's active. It's called OWEL: Older Women Embracing Life. It doesn't say "HIV," but these are older women with HIV. The woman who helped start this group is still involved, but she's not directing the group any longer.
There's also a group, I believe, in New York.
There's a group in New York that I know of called Copacetic Women Over 50, that's women over 50 living with HIV -- another group that does not have "HIV" in the name. The founder of that group is a woman named Brenda Lee Curry.
Oh, yes. I know Brenda Lee.
I know there was also a small group at some point in Minnesota run by a woman named Lois Crenshaw, with a similar acronym: OWWLs, for Older Women and Wise Ladies.
I didn't know about that. Well, when you were mentioning community, I guess that didn't quite turn out like I thought, either. I don't really have a community of people living with HIV. I'm just out there by myself as a prevention educator.
I realize that in my presentations and in meeting people, I do have to talk about and think about aging with HIV (which I do). But prevention is my primary passion. That can come from me just talking to any kind of group, and reminding them that we all can be at risk for this disease, but we don't have to be, if we know what we're doing and we take precautions. That's really what I'm into now.
What kinds of groups do you talk to?
Anybody who will invite me. Anyone who will listen!
I did the Ryan White bit in Kansas City, community planning. That went on all through the late '90s. I didn't know what I was really bringing to that, and whether that was the kind of community which would best serve me, and if I was serving that community. I felt like I never was as forthcoming as I probably should have been about how I felt about certain issues. I'm not one that really wants to rock a boat. I've had leaders of groups say to me, "Jane? Well, Jane, how do you feel about this?" Because I haven't said anything.
And this wasn't just in HIV. That's in a book group, or a board. I serve on the board of the Friends of the Library, here in Kansas City. I love doing that. But I notice that I am the quietest board member. I just don't pop forward with opinions. It's entirely different when I'm up speaking, encouraging people to be careful, to remember that nobody knows the sexual history or drug history of anybody but themselves. I think we all have a responsibility to safeguard our health. I can say that now. I didn't know that in late 1985, of course. But it is important.
Diseases like multiple sclerosis and muscular dystrophy and Parkinson's and all these other diseases, various cancers -- well, maybe lung cancer is preventable -- but many diseases can't be prevented. But HIV can. I just feel very strongly about that. And in that regard, I can just stand up and talk on and on and on. But I've always been a rather shy person. You get me in a board meeting, or a meeting of an organization, and I'm not one that's forthcoming with a lot of opinions and wanting to be center stage. I certainly love center stage when I can give a presentation on HIV prevention. I certainly do. On the board of the Friends of the Library, the thing I love most as participation is to cashier at our book sales. Now, I have to deal with the public doing that, but it's more one-on-one.
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 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. 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.
Where do you turn for support, or just enjoyment, if not to support groups or HIV organizations?
There's a loose-knit group of women here who go out together to dine, and go to cultural events. And, of course, we have this fabulous new performing arts center in Kansas City.
I can't tell you that I go regularly to, and hang out with, a church group. I'd rather not get into that, because that shocks some people. I am frequently asked how my spirituality changed after my diagnosis -- not so much anymore, but when I was first speaking and the diagnosis was much newer, I often got asked that.
I used to do more in-home entertaining. But the older I get, that's kind of stopped. It's really sort of stopped with many in my circle. There are fewer in the group who are entertaining at home. We just seem to be more likely to meet somewhere together, to dine or, as I say, go to a movie, or a musical event. I am a frequent moviegoer, but what I have found now is that -- and I still go with my friends to movies -- but I don't always enjoy the movie as much as I do when I rent it through Netflix and watch it on closed-caption television, because I do have a hearing problem. It is not related to HIV at all. My father had hearing aids, and he conveniently would lose them because he didn't want to wear them as he got older. My hearing impairment is getting progressively worse.
I’ve been so thrilled that Downton Abbey continues on PBS, and also that I can use Netflix to watch series such as House of Cards that are on the cable channels I don't receive. For Christmas 2011, my family gave me a 32-inch, flat-screen, high-definition TV, plus a Blu-Ray DVD player. I didn't get it right at Christmas, of course; I wasn't going to lug it home from Toronto.
Tell us more about your family and grandchildren.
My fall did one thing: It got my son Stephen down here from Toronto with his family. Because Matilda had never been in Kansas City, and Milo hadn't been here since he was about 20 months old, they needed to see where their father came from. So they just drove down here over the kids' spring vacation in March of 2012. Matilda was so funny; she wanted to go to the hairdresser's. We were out touring around, and she wanted to see where I fell! We went in and I showed her exactly where. She draws all the time -- well, they both do -- and she drew me a picture and wrote: "Dear Granny Jane: How was your fall?" In the drawing, she has this woman just, you know, explode. Kids!
Going back in time a bit: How did you first disclose to your son that you were positive?
That year, 1991, I had spent Christmas in San Francisco, staying with my friends at their flat in the Marina District. Because Stephen had lived in San Francisco since 1986, every Christmas, I would go there, stay with my friends, and see Stephen and his friends.
Stephen and I are it in our family. I mean, I have no brothers or sisters. He has no brothers or sisters. Well, I guess he has some half siblings now. But they are very, very, very much younger than he. He grew up an only child; I grew up an only child. So after his father moved on, it was just the two of us. He was finishing high school and starting college, and I was starting a new life as a single woman.
Anyway, I would say that we're rather close, in that we relied to a degree on each other. So, after the 1990-91 holidays, Stephen and his girlfriend had driven me to the airport in San Francisco. In those days, USAir had a nonstop flight, so four hours after they dropped me off, I got home and the first thing I did was go through the mail that had accumulated in two weeks. And I opened this letter from this insurance company. I had applied for new medical coverage, because Blue Cross/Blue Shield was so darned expensive. I wanted to find another insurer, and I thought I had. I opened this letter and it said they were sorry, but I could not be insured because my blood profile had shown "a significant blood abnormality." The letter had been sent on December 21 of 1990. So, if I hadn't been in San Francisco, I would have opened it maybe on Christmas Eve afternoon. Then you're left wondering what's the matter with you.
Anyway, I opened it that Sunday and I was just dumbstruck. I thought leukemia. I called Stephen. And here, I had just said goodbye and I called him. I think he was kind of undone also. He asked what was I going to do.
I said, "I've got to find out what they're talking about. I'm going to call the underwriter who signed the letter tomorrow morning, and find out what it is."
Stephen said, "Let me know right away." So, that's how it all started. Stephen was the first person I told about everything. He was the first person I told that I hadn't gotten the insurance. He was then the first person I told the next day when I found out. See, the letter wanted me to send the name of a physician back up to the insurance company in Milwaukee, and they would contact the physician and say why I hadn't been approved for insurance, because it was a severe blood abnormality.
Well, I wasn't going to wait for that. At least by 1991, we had fax machines. The woman at the company said she would fax it. So, by that Monday afternoon, I was with my primary care provider, finding out that the company said my blood had tested positive for HIV. Of course, I don't even remember that they said HIV was one of the tests they were making. I remember signing something, but I wasn't thinking about what they were testing me for. I was so naive.
So, I came home and called Stephen. Stephen was right there the whole way. Of course, I first said to Stephen, "Now, you can't tell anybody. You absolutely cannot tell anybody."
Then a couple of weeks later, he called me back and he said that he just couldn't handle this alone, and would I please give permission for him to tell his girlfriend?
It sounds as if he was distressed, definitely.
Oh, he was. So I said, "Well, of course." Well, that was wonderful, because through her family I had an in at UCSF, so that in the summer when I went out for my annual visit, the relative got me in with the physician there who was treating women with HIV. So that was very good.
So, Stephen knew from the beginning, as did my friends with whom I had stayed. I told a very few friends here in Kansas City that I knew were educated and they would understand how this disease was transmitted, and that there was nothing to fear from me. That's how I lived for four years.
Do your friends now know about the work you do, and that you're living with HIV?
Oh, it's no longer relevant. In the beginning, they were wonderful; and they'd want to know about how my doctors' appointments went and all. It's never even talked about anymore. It's, "Where are you traveling next, Jane? That's great."
Do you think you'll talk to your grandkids about HIV prevention, or that your son will do that?
They do know I have HIV disease. Apparently Stephen and Mira told them at some point. And just recently, Stephen and I had a brief, simple discussion about transmission with them.
Is there anything else that you'd like to share with readers?
Just really that I'm still here, doing this work. And I would welcome invitations to speak. Yes, I'm still speaking! I really do hope to continue this until ... well, at some point I'll have to stop, of course. I'll get too forgetful. I won't know why I'm standing up in front of the audience! [Laughs.]
This transcript has been edited for clarity.
Olivia Ford is the executive editor for TheBody.com and TheBodyPRO.com.