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fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

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Encounters: “You know…sometimes I don’t remember that I have it.”

About the Encounter

Should I talk about the bad stories or the good stories?

Okay, the bad part is hearing that something’s wrong with you. That burns me.

I don’t want doctors bothering me–just leave me alone. I don’t know why I’m afraid of doctors. Sometimes I just don’t like to hear them talk. I just found myself going more to the doctor after I was diagnosed. Before, I didn’t have to go to the doctor. I was healthy.

I don’t like hospitals. My father died in a hospital. My mother died in a hospital–she was brain dead when she passed away, in 2002. My sister died in a hospital. To see somebody’s tongue out their mouth, and hooked up to those machines–I’ve always told my daughters that I don’t want to die in a hospital, that I want to fall asleep in my house.

I love all five of my daughters in a different way. They know what I’ve got. They know who gave it to me.

They used to like him, but they don’t care for him too much now, after, you know, what he done. They felt that he took my life, and he could have told me. When it first happened, they wanted him arrested, but I was in love with him.

I still stayed with him after I found out, because I’d already been with him for ten years. I felt that I had to be with him, because that’s the person who gave it to me, and I couldn’t be with nobody else, because I didn’t want to be one that goes around giving people stuff.

Now we’re friends. We’re not boyfriend and girlfriend, and it’s better that way.

Way before I was diagnosed, he used to tell me, “Whatever I have, you can’t get it.”

But I was getting skinny. I thought, “No, something ain’t right here.” My body just felt different to me. And finally I got brave enough to see the doctor to find out what was wrong, which was good, because if I had never gone, I’d probably be dead, right?

This doctor was the first to tell me. And I cried. Yes, I did. I didn’t cry all day; I just cried. I knew the doctor was going to tell me that, because I felt that I’d been lied to.

My daughter was with me. Then the doctor asked me, “Do you want to start medication? You don’t have to get it now.”

But I said, “No, I want it now.” I wanted to live, and I didn’t want the worry to destroy my mind.

Then I was like, “How am I going to tell my other kids?”

My oldest daughter had to tell them. I gave her permission. I couldn’t tell anybody, especially my youngest daughter. She’s a tomboy, and she would try to kill the man who gave it to me.

Usually, I just feel normal. You know…sometimes I don’t remember that I have it. I’ll go out on the bus and think, “Oh, I missed my pill.”

I tell my daughters, “Y’all got to make sure Mommy’s taking her medications. Y’all got to keep me alive.”

I take the medication even if I don’t want to. When I take it, I feel different. Sometimes I eat peppermint if the pills make me feel nauseous. I don’t like water with it–I like soda, something sweet.

I’m all right. I want to live. But when I see certain things–commercials on TV, something written on the wall–or when my daughters are around me, and they say, “Oh, that girl’s got AIDS,” I just feel that pain, and I’ll be quiet.

The only reason why I don’t tell the world is that I don’t want nobody treating me differently. Once you say that, people don’t want to drink after you. I’ve seen it. If I tell the world I have it and hear people say, “Oh, I’ve got to stay away from her”–I don’t want that.

It hurts me that I can’t share. Sometimes I want to go tell my best friend, and I can’t tell her. I want to tell my goddaughter; I can’t tell her. I shouldn’t use that word “can’t”–I’m not ready.

My family doesn’t mistreat me, and I love that. My daughter, when she found out I had it, she kissed me on the mouth to let me know I was the same. They hug me, they kiss me, they drink after me, they go to the bathroom after me. They don’t care. None of that wiping down after me–none of that uneducated stuff. They know I’m a clean person. I keep my house clean. My grandson crawls on the floor, and I live in the projects, so I mop every day. I’m a clean fanatic. It’s not that I wanted to catch it. It just happened.

Whatever my daughters go through, I go through. I came from a big family, so I don’t like quietness too much. At night they’ll say, “Can I play music, Mommy?” And I’ll say, “Yeah, just close the door.”

I love them all. They make me happy. I think that’s the reason I would never think about suicide or giving up; I like to see life. When I do go, I want to go at peace, knowing they’re all right. But they still need a little working on, and I guess God’s got me here working before he calls for me.

I’m glad I believe in God, because if I didn’t, I would just say, “Why me? Why do I got this?” He’s still here with me. There’s a lot of people who had it who are gone. He’s saving my life for something, something else he wants me to do or see. We all out here doing a job.

When he does call for me, I’ll go. So far, though, I’ve gotten everything I want. I have all my children, so I’m kind of blessed. I didn’t have a son, but I’ve got grandsons.

I think one of my daughters shared my status with my first granddaughter. The other day she told me, “Grandma, I love you. You’re the best grandmother. You’re my favorite.” That made me feel good, like I did something to make her happy. I told her, “I love you, too.”

Whatever happens, I just want to survive. I’ve got too many pretty things in front of me that make me happy. My grandkids: “Don’t leave me now, I need you.”

If there’s something in this life that keeps you here or keeps you from doing drugs, then do it. And they right in front of me, people that love me.

If you’ve got love, you can’t go wrong. If you feel like everybody hates you, that the world’s against you, then you’ll do a lot of stuff that you shouldn’t. But I have love: “Mommy, Mommy, Mommy. Grandma, Grandma, Grandma.” I’m busy here.


About the Encounters Project

The Encounters Project began in the summer of 2017 as a collaboration between Pulse visuals editor Sara Kohrt and two medical students from Albert Einstein College of Medicine, Kristen Lee and Erin McCoy. The three photographed and interviewed patients who attend a family health center in the Bronx. Patients were asked to talk about their healthcare experiences, to share stories about their lives outside the clinic walls and to reflect on how these two worlds affect each other.


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