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?
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.
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.