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.
What advice would you give to someone who just found out they were HIV positive?
[laughs] I've had a few of those people. I was in the hospital a couple of times. Once while I was there, a lady said, "What are you here for?"
I told her, "I've got the virus."
She said, "Oh, poor thing!"
I said, "What are you here for?" She gave me her symptoms.
I said, "Oh my God," to myself.
Then I was getting ready to leave the hospital. The doctor came and took the lady out of the room to talk to her. When she came back in, she and I made eye contact. She started to cry and I started crying with her. She had found out that she had the virus also. She was a young white girl with brown hair.
I started her going to support groups, I got her Terri as her case manager and got her started right away with everything -- got her hooked up. Then she went downhill, to 95 pounds.
I had told her about a group that I was in, and that she should come sometime. A few months later I went to group and she was sitting there. I thought, "What is this woman looking at me like this for?" And then I recognized who she was. I called her name, and she and I ran together and we started hugging. She's a case manager now.
She wasn't a case manager at the time?
No. She was an alcoholic. She was a little bitty thing. Now she's married -- she just got married a few years ago -- and she's a case manager. I call her my daughter.
What did you tell her when she was crying? How did you help her see that you can live a full life with HIV? What did you say to her?
I told her, "It's OK to cry, because I'm crying with you. When you get out of here, you get up off your you-know-what and get started. Go and find a doctor." And Terri Wilder walked in, and she took it from there.
Terri was your case manager?
Yes. She was my case manager and my son's case manager. That's what made us unique [laughs]. Dr. Schut was my doctor and my son's doctor, once my son got here on his last leg.
I love Terri so much. But when I first talked to her as a case manager, I heard that Southern accent. I said, "Oh my God, I've heard about people in the South!" I thought she wasn't going to be able to help me, until I met her. Then I found out she was a little piece of dynamite! Whatever she tried to do she succeeded in helping. Yes, that's my heart.
You feel fortunate to have had a great case manager.
Oh yes. She was there right after my son passed. She was there while he was passing. I love her so much. Oh God. I love my doctor. The whole clinic is so nice and respectful!
What's the name of the clinic?
Hennepin County Infectious Disease Clinic.
You're lucky to have found a good clinic! How do you think HIV has changed you?
I think it's made me more sensitive, more alert and more outspoken. When I told people that I was an activist, people would tell me, "Don't say that! Just say that you're an advocate."
No. I'm an AIDS activist. I've never been outspoken like this!
Have you lost friends because of your outspokenness?
I've lost friends by telling them that I was infected.
What did they say?
They just never called or came around anymore. So I said, well, I didn't need them in the first place. If they couldn't help me now, you know, just talk to me or hug me -- women and men friends -- then I didn't need them in the first place. They were not friends in the first place.
When you told people whom you were afraid to tell that you had HIV, how did they react?
They reacted very friendly at first. Then I just didn't see them anymore, the people that were supposed to have been my friends.
What about your family -- all your children, grandchildren and great-grandchildren? Are they OK with you being open about your HIV status?
Yes; and when they see people that are at risk or having risky behaviors, they also tell them to go and get tested.
So they're all advocates?
Yes! People ask them, "How do you know so much about HIV?"
They say, "My mom is infected." They're behind me.
I feel very fortunate.
Is that unusual? You have 51 people, with the grandchildren and great-grandchildren -- I'm not even counting your own kids -- who are behind you.
Yes, yes. I feel so fortunate. I just got a new woman in the group last week. Honestly: She said her mother came to visit her, and for 10 days she wouldn't eat any of her food or drink anything out of her glasses. She just lived off of yogurt and something else. She was afraid she was going to catch the virus from her daughter.
Women can come from anywhere in Minneapolis to the OWWLs group?
And it's free?
Yes, for women of any age.
So it's not just for older women. Can younger women come?
Yes. It's for "wise ladies," so that's open.
What do you talk about in this group?
We have guest speakers come in. If there's no guest speaker and someone needs time to talk about something that's happened since the last time the group met, they talk about it. More than likely someone in the group has gone through what they're going through.
So they share their experience.
Yes. There are also women that come that are affected by but not infected with the virus: Their husband is living with AIDS, or their boyfriend is living with AIDS.
I wanted to talk a little bit about your son Leivery. How did you feel when it turned out that you ended up with the same disease as he had? Did it make you stronger in a way, because you knew that you loved him, and he was worthy of love whether he had HIV or not? Did it help you with your strength in some ways?
Yes, it really did.
When he told you, did he think he had been infected a long time?
Yes. He really didn't have to tell me. He had scoliosis. He had had surgery on his back and they put a rod in there. At that time he had swollen up and everything, and we were wondering what was going on. He was a professional dancer. [His stage name was "Lei."] He never smoked, he never drank. He was in good health. When he got sick after the surgery, they found out he had the virus.
Did he work for a dance company? What company did he work for?
Joel Hall Studios, in Chicago.
Was your son gay?
Did everyone know he was gay?
Yes. He had a partner. His partner is still in touch with me. He's not infected.
Every day that I was going over there, my son was there with me. Terri got him out of there because she felt that I didn't need him right here with me. He needed special help. He wouldn't leave; he was dying. He didn't want to go because he knew what I still had to go through.
I released him; I told him, "I think you've done a very good job. Get your rest." My daughter and I were there, and he went on home.
How old was he when he died?
Was his partner with him also?
He came when I called him. We've been in close contact for 12 or 13 years.
Do you think that gay people are becoming more accepted in the world you live in?
They have always been accepted in my world, because they're human beings! A lot of people want to say, "I'm not gay, and I don't have to worry about gay people."
I say, "I'm not gay either, but I'm living with them." I don't feel that they're any different than me. Who says that I'm right for being crazy enough to have eight babies? [laughs] Right now I wouldn't say that's "normal," [laughs] but I wouldn't give one of them back.
My son thanked me for giving him life, and not getting rid of him before he died. Everything makes me stronger.
Do you have a particular health regimen that keeps you well, like vitamins? Do you eat very healthily? Do you exercise?
No. I have a physical therapist coming in now to help me be able to walk and stuff. I can walk, but I've been falling lately.
Do you think you're getting really good care?
I know I am; I know I am. I always tell people when I do my speaking engagements that I'm going to lick this thing. I am a positive person about this AIDS and HIV. I try to help the ladies in my group to empower themselves and to be advocates.
We need more people like you.
Yes. People say to me, "You're so strong." I'm not strong; they just don't know.
You don't think people know their own strength?
Right! I don't baby anybody. I tell them just like it is. At first they would get kind of upset with me. I said well, I have to tell you like it is. I want them to realize what I say and what somebody else might say, so they won't get angry and just stop their treatments and stuff.
With that we have to bring this interview to close. Lois, it's been such a pleasure. Thank you so much for taking the time to talk with me.
I really appreciate you giving me this chance. Maybe somebody out there, maybe one person, might be able to save themselves.
Well, you're definitely an inspiration!
Thank you so much.
For more information about the OWWLs group, including meeting time and location in Minneapolis, please contact Lois Crenshaw at 612-284-5609.
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