How old were you at the time?
When you got diagnosed you were 55?
Yes. But I was sickly afterward.
When you say sickly, what do you mean?
You were also depressed, you said.
Yes, very much so.
How did your depression manifest itself? Did you just lie in bed? What did you do when you were feeling depressed? Did you not want to talk to people?
When I was first diagnosed, I didn't want to be around anybody. I felt ashamed because of my age, for one thing. I didn't want to be around anybody other than my children. I stopped eating.
When you said you were ashamed because of your age, what do you mean? What does your age have to do with this?
I always thought that younger people would contract the virus, not an old person of 53 or 54.
Because HIV is sexually transmitted?
Did you think people thought that you used intravenous drugs or something?
Yes, or a sex worker on the streets -- you know, a prostitute.
All those are very negative associations for you: sex worker, intravenous drug user or just someone who has sex.
You thought people would think that you belonged to those categories?
Yes. I was worried about what other people thought, instead of worrying about me and this virus. People tend to judge very quickly. But now I'm at the stage where I don't give a care.
At the time, did you regularly go to church on Sunday?
Yes. I had always gone to church, even in the Bahamas.
Did you go to church regularly in Minneapolis?
Yes, a black church. I told my pastor I was HIV positive. She didn't understand about the virus either.
Were you able to explain things about the virus at the time?
I thought I had explained to her. Then she wanted me to start going to nursing homes to have Bible study. I told her no, because my immune system was very low. I was afraid that I might catch something to go along with the virus.
Did you have an official role at the church?
I was a church mother.
A church mother is an elder, a wise person that talks to the children of the church. I was the oldest one in the church.
At 54, you were the oldest one in the church? [laughs]
What kind of church is it?
An inter-denominational Church of God in Christ. We had white and black members.
It must have been a pretty young congregation, if you were the oldest.
Right, yes. This was a new church.
You continued to be the church mother?
No. After I saw where the pastor really wanted me -- she kept on me to go to the nursing home -- I saw that she wasn't understanding what I was saying. I just knew about what Dr. Schut would tell me: that my immune system was low and I had to be careful about who I was around. I saw that the pastor didn't understand, or I wasn't presenting myself properly, so I started going to another church.
Do you go to another church to this day?
Yes, I do. I'm trying to help get the black churches together to help with HIV and AIDS.
How are you doing it?
There's a nurse that works at NorthPoint [Health and Wellness Center in Minneapolis] and she's a member of my church. We've been talking to other pastors about having a coalition of black churches.
Do the churches in your area know very much about HIV?
I don't think the black churches know as much as they should know. Plus all the young people and older people don't know what they should know.
Do you feel there's still a lot of stigma about HIV in churches?
Yes, I do. The black churches in my area have only been into HIV and AIDS for about four or five years. Before that, they wouldn't even acknowledge HIV and AIDS to me.
That wasn't very helpful to you, because you've been infected a long time.
Yes I have.
You haven't really had church support?
Well, my pastor was respectful when we had to go on a fast or something. My pastor at the time would tell me, "Don't go on a fast, you need your nourishment." There were certain things I wasn't supposed to eat.
I feel that she was in my corner that way, but she was not understanding about the virus and going to places where people were very sick.
Was your CD4 count very low?
No. It didn't get very low until after my son died.
Did you start treatment back then?
Yes, but they didn't have the cocktails then.
I think it was '95 or '96 that the cocktails came out.
I had started before with that AZT [Retrovir, zidovudine] stuff.
You started with AZT alone?
Do you remember what drugs you took after that?
I took ddI [didanosine, Videx].
Did you have reactions or side effects from the AZT or the ddI?
With the ATZ. It would turn my nails black. My toenails and my fingernails would turn black under the nail.
Was that scary for you?
Yes, it was.
Are those HIV/AIDS groups in Minneapolis?
Yes, all these things I'm naming.
You started becoming an activist?
What gave you the strength to do that?
I'm watching everybody and nobody's understanding what I'm trying to say. If somebody would be still for a minute, I'd talk to them.
My case manager also talked to me about starting to get active, so I did.
Had you been an activist when you were younger?
So this is very new to you.
Yes it was.
How did it feel? Did it make you feel better?
Every time I would participate or do speaking engagements, it felt like I was getting stronger. Talking about my son also made me feel stronger.
It was very healing.
How did you know what to say when you were speaking in public?
I wouldn't write anything down. I spoke to them from my heart and from the knowledge that I had.
Your knowledge of living with HIV, and how you felt about it?
Right, and about appreciating life now, really appreciating it. Watching the grass when it starts growing, and the leaves when they start turning brown -- little things that really didn't make a difference before.
Where you also trying to fight the stigma and the shame that you felt? Were you trying to change that situation for other people?
At first I did. But then, like I said, I got strong enough.
I can give you an example. I was going somewhere on an airplane. I had had my driver's license picture taken before I lost weight, so when the people at the airport looked at my driver's license, they looked at my picture and said, "Is this you?" I said yes.
They said, "You lost a lot of weight -- how'd you lose it?"
I said, "I've got AIDS." [laughs]
[laughs] What did they say?
A couple of women at the desk would come around and say, "Can I hug you?"
[laughs] That's sweet.
Yes. But I always feel that people want to judge you. Most people ask, "How did you get it?" I tell them it doesn't make a difference how I got it. I got it, and now I got to try and live with it.
That's a great answer. Do you think that helps to make people understand? Do you think that you're teaching people all around you?
I think it has. I went to a church in St. Cloud, a white Catholic church, and I spoke. Everybody sitting back there was looking at me. When I told them that my background was in law enforcement, and that I was a mother of eight children and a grandmother of 24, you could her them gasp.
At the end of it, when we were going out, a little child, 8 years old, walked up to me and caught me around the legs. She looked up and said thank you for sharing. That meant that somebody heard me.
Little things like that mean so much to me. If I can just touch one person that would listen to me when I say, "Go and get tested. Talk to your doctor. Take your medication on time" -- it means so much to me, that somebody would listen.
Have you ever had the experience of people saying: "HIV doesn't cause AIDS"? Or: "The medications will poison you"? There are a lot of myths out there about HIV and HIV treatment. Have you encountered that at all?
I've encountered it really once. My son's pastor in Chicago told my son that he was saved and that he didn't have to take that medicine anymore. That's how he got down like he was. If he could have lived one more year, he might've been able to get on the cocktails.
Nobody would dare come to me and tell me any of that stuff. I've heard before, from some of the women, that other people have said the medication doesn't do any good.
But they don't dare say it to you.
I've never experienced it.
Living with HIV, don't you get sick of talking and thinking about HIV?
How do you have the stamina to still be an activist, after all these years?
You know what? It knocked me down. I've lost all this weight. All I really do is go to some meetings and run my support group. I can't do all the running around I used to do. But if somebody asks me something, I got it -- I'm going to tell them.
Tell me a little about the support group. When did you start it?
I was on the Task Force -- Hennepin County AIDS Task Force. There weren't that many older people where I was, and the black churches were not participating. About five or six years ago, I said, I'm going to start a group for people that are 50 or older. After a couple of years I said, no: older people, period.
A lot of people were dying of what I feel was AIDS, but the doctors didn't classify them as being in the spot where they would have AIDS. "She's older, or he's older, and they live in the suburbs, so they wouldn't have any AIDS."
No one even tried to diagnose them or test them.
They didn't think that they were part of the risk group.
The "risk group" is people trying to love and be loved. A lot of people, they don't have AIDS because they're street workers or IV [intravenous] drug users. They're just trying to love, and be loved. That's how I feel about it.
Now with these new drugs out for these men to have an erection ...
You mean Viagra [sildenafil]?
Yes, and the other one -- C-something.
Have these drugs changed the world for older women?
I think so. I spoke to this group of older women about AIDS and HIV. "Oh, [sucks teeth] I don't have sex anymore, we don't have sex anymore."
I said, "You haven't had sex in about 10 years?"
"Oh, well, I didn't say that."
I said, "Well, don't let somebody else's past catch up to you. This person might have had it, and transferred it to your husband or your wife, and lay down with everybody. Just do me a favor and go and get tested."
Age is no difference. You're loving, and trying to love. Or you have love and are trying to be loved, you know?
That's a really interesting way of putting it.
Don't let somebody else's past catch up to you.
Do you have a partner now?
Have you had a partner since you were diagnosed HIV positive?
What was the reason that you decided to become abstinent?
I couldn't find a working man, a man that would just catch my eye. I've been married three times, divorced three times. I had my children. All my children are grown. I had six boys.
Why did you decide not to look for a partner after you were diagnosed?
I was scared that I might infect somebody. My T cells were very low.
At that time it was like 190 or something like that. That's when I was diagnosed with AIDS, after my son died.
That was the lowest you think your T-cell count went?
I think so.
Do you know what your viral load was at that time?
I don't know. But I know I'm undetectable now, and I have over 500 T cells.
What HIV medications are you on now?
Oh God, what's the name of this thing? One pill a day.
Yes, yes, yes.
How is it?
Do you just take it before you go to sleep?
Yes, I do. But I have other medications for aging, arthritis, depression -- different stuff. Atripla is the one pill that I will not miss, and I feel that it's working. My doctor feels that it's working.
That's a very good CD4 count you have. Have you had any other symptoms in the past 10 years or so, besides the flu symptoms you mentioned earlier?
Oh yes: rashes, diarrhea, blackness of the nails. That came from AZT, but I'm not on that now. My nails are nice and clear again. Also, I have blood clots and they can't figure out where they come from. I'm blind in my right eye.
Why are you blind in your eye? How did that happen?
Blood clots. I had two clots in my lungs as well. I don't think that was AIDS-related. I had four attacks of pneumonia this year. It was bacterial pneumonia, it wasn't, what do you call that AIDS-related pneumonia?
PCP [pneumocystis pneumonia].
Yes -- I didn't have that.
You just got sick -- they didn't think it was related?
You did mention that you raised some of your grandchildren as well.
Are they also grown? How many did you raise?
For how long did they live with you?
For about three years. My daughter convinced the state that she had gotten herself back together. The state gave her children back to her. When they gave them back to her, that's when I left and went to the Bahamas to live. Arthritis and this cold weather were not helping me. It was in November that I left. In January, I think, I had to come back because the middle grandson that I was raising had gotten shot; he got killed.
The other two grandchildren are grown. He would've been grown too.