I met my husband in a night club. He was one of the musicians there and I used to go because I liked to dance. He was the love of my life. We had a wonderful marriage, you know. We were best friends. We were lovers. And we were husband and wife. We were partners. We made decisions together.
And everything I ever asked he gave me right up to the end, when I asked him, I said, “people always die at night, you know, and I don’t want to wake up and find you gone.” And so before he died he refused to take any medication, any food, or any water for, like, three or four days. I said to him, “are you ready to go?” And he said, “not yet, but soon.” And so he didn’t die at night. He died in the afternoon.
We lived together from 1976 until he died in 1992. They found a tumor the size of a small grapefruit sitting on top of his brain, mashing down one side. He really bounced back, but the doctors explained to me that the type of tumor he had was a recurring tumor. Fortunately, we had whole year before it grew back. And when it grew back they went in and they took it out again. But he did not recuperate as well.
When he got out of rehab from the second surgery he came into home hospice care. I became a caretaker. I was able to handle it right up to the end with a lot of help from friends and family. I had one friend comment that she could not have done what I did. And I said, “sure you can, if you love someone it’s not hard.”
After he died, it was like the rest of my life was cancelled. I lost a piece of myself. Every way I walked in my house there was some memory. Here I am, not knowing what to do with myself, not having my friend to talk to, not having anyone to hold me close and snuggle up with at night. It lasted years, and eventually I began to heal a little bit.
Five years later I ran into an old friend who had grown up down the street. We went to high school together and we stopped and said hi, sat on the porch and talked for a long time. And everyday we just sort of gravitated toward each other and talked, and I said, “You know, I need to go back to church, I need to find a church.” He said, “come, go to church with me on Sunday.”
He knew he was sick. He didn’t tell me what was wrong. And I didn’t ask what was wrong because I was still in a bad place. I even said to him, “yeah, well, you know, I don’t even want to be involved with anybody else because I don’t want nobody else dying on me.” Death is so permanent. That’s a permanent leaving.
I was still in the weepy stages. I could hear a song on the radio and start crying because I missed my husband and he very gently put his arm around me, let me cry on his shoulder. We were two old friends being comfortable together. I had lost my husband to death. His wife had left him. He allowed me to grieve. He didn’t run away when I cried.
I gave him all this love I had bottled up in me. And when I couldn’t sleep at night he lay down beside me and held me in his arms until I’d fall asleep and he’d get up, let himself out and go home – until one night.
And it was hot, it was summer, what can I say? I was cute. I was skinny. Had on little short shorts and, you know, a little t-shirt and he had on shorts and we both were in the bed and sleeping and our bodies woke up before our brains did. I didn’t complain because it’d been five years. I was like, “whoo, about time, thank you very much.”
But he was regretful, I guess, because he knew he had a secret and he hadn’t shared it. And so he avoided having sex for the rest of the summer. I didn’t push it. Actually, we did once have unprotected sex after that. It was Valentine’s Day and he had a dozen red, long stem red roses and a great big balloon. It was just such a wonderful surprise. And the one thing he said to me was, “you’re in trouble now because I’m in love with you and I really want to marry you.”
And he got sick. He got pneumonia. He was in the hospital. And a little voice started clicking in my head – pneumonia, hmm-hmm, sick, hmm-hmm – ask the question! And so I asked him, was he HIV positive? And he said, “yes.” He didn’t hesitate and I said, “well, were you going to tell me?” And he said, “I didn’t know how. I just didn’t know how you would accept it.”
The last time he proposed he was actually in the hospital in hospice care. And I went to visit him and he looked at me and he says, “why didn’t you ever marry me?” So I said, “I’ll tell you what, if you get up and walk out to this hospital, I’ll marry you.” We both knew he couldn’t do it. But it made him happy for the moment.
Everybody needs to know somebody loves them. I needed it, he needed it and that was the basis of our friendship that grew into a relationship, and we loved each other, we did. I just thanked God I was spared the bullet and I didn’t have any symptoms and I felt fine. I got tested once and I tested negative.
I was fifty-seven when he died. I didn’t get tested again until I was fifty-nine. I was just tired. And prior to that I was a little energizer bunny, I was hyper. Borderline manic, I guess. It was just not right. I did know enough from him to know that chronic fatigue was a symptom.
Initially, a lot of responses were: are you angry? You know, even my grandson expressed that he was mad. But I wasn’t. I had to accept my own responsibility. Listen, I could have said no. I could’ve closed my legs. I didn’t. So, I wasn’t ever angry with him. I had to be angry with myself if I was going to be angry with anyone.
I had to take responsibility. I taught my son: wrap it up. When he was thirteen, I told him there is stuff out here that you will never be able to use that thing again, if you don’t protect yourself. That is literally what I said to him, and I said it to all of his friends because my house always full of boys, you know, so I would tell all the boys: “Wear the condoms!”
Then didn’t take my own advice. My generation used condoms as a means of contraceptive, not to prevent disease. We are of a generation where that was not something we have to think about. We didn’t consider that there were diseases that could literally kill you that you could get by not protecting yourself. So, you know, now I know better. I was just uneducated.
People just don’t know. They think it’s gone. They think it’s a gay disease. They think it’s a drug user’s disease. A lot of senior citizens in particular have a concept of what they think HIV looks like. I tell my story because I don’t want them to have to go down the road I’ve gone down. I want them to get tested. I think the only way it will ever go away is by educating, people speaking out, making it a media noise. And I think that’s the only cure.
Faith takes you through everything. There are days I have stepped out on faith and felt that there was nothing under my feet but faith. I believe God has a purpose for everybody. Some of us don’t find out till late in life. I think this is the purpose God had for me. He’s using the talents he gave me so that I can help somebody else.
We grieve because if you’re really close to somebody it’s like a piece of us dies with them. But over time you will realize that they left a piece of themselves with you. Got a little piece over here, got a little piece over there. So I look at myself as a beautiful patchwork quilt, made-up of pieces of all the people I love that are no longer with me.