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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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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.

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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. 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."

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?

"In the beginning, [my friends] 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.'"

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.

Send Jane an e-mail.

Olivia Ford is the executive editor for TheBody.com and TheBodyPRO.com.


Copyright © 2013 Remedy Health Media, LLC. All rights reserved.
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