My True Story

As part of a collaboration with our longtime partner organization Christie's Place, The Well Project will be sharing stories from their book "Healing Hope: A woven tapestry of strength and solace" as blog entries on our A Girl Like Me platform. The views and opinions expressed in this project are those of the authors and do not necessarily reflect the views or positions of The Well Project.

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Illustration by Lena Gacek

by Barbara Elaine Edwards

Transcription of Audio Recording

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Good afternoon. My name is Barbara Elaine Edwards. I am a sixty-eight-year-old African American female. I was diagnosed with HIV on October 16, 1995. At the time of my diagnosis, I was incarcerated at a women's prison. The day I got tested, I wasn't told that I had to take the test. I wanted to take the test because the other women at the clinic were taking the test and I didn't want to feel left out. Two weeks later, the nurse calls me in, and she says, "It's so sad," she said, "of all the women that was tested, you were the only one who came back positive."

I spoke to the doctor there and was told that I didn't have long to live. They told me that my T cells were very low. I asked what was low 'cause at that time I didn't know anything about HIV or AIDS. I had heard about it in the community but had not focused on it. He said that my T cells were at 42 and I said, "Well how high does it get?" He said 55. He said, "So you are very low."

I'm 68 years old. I still like to get out and help people. I help all the seniors that I know in my community and in my complex.

At the time of my release the following, day I went to an HIV case manager. She directed me to see a doctor at CIAACO Clinic, North Park and I was set up with Dr. Jackson at that time. Three months later, going in every month, that third month, he said "Wow! Your T cells are so high! You've got normal T cells like a person that is not positive. Your T cells are up there with normal people. I can't believe it!"

He said I didn't even have to take any medication. I'm like, "You call 42 normal?" He said, "Who told you your T cells was 42?" I said, "The doctor in prison." "Well, that doctor was a retired veterinarian." My T cells at that time was 1248. My viral load was undetectable. For years, I was undetectable. My T cells were still high. I think they dropped to about 900 over the years.

My doctor told me he wished he could bottle whatever I had. He wished he could bottle it up and put it on the market to sell because I was doing so well!

I really didn't start taking medication until 2014. At that time, I had gotten very sick with a bad infection. That infection came from the phlebotomist every month drawing blood out of a varicose vein in my leg. One phlebotomist would not draw my blood if he couldn't get blood anywhere else. He said I could get an infection. I asked what the infection would look like. He said, "I can't tell you that. I just know it's deadly. It could kill you." So, in 2014, I got that infection. It killed everything on my left-hand side. I have optic nerve damage in my left eye. All my bloodwork went down. It was so bad the doctors wanted to put me on blood transfusion. At that time, the doctor said that my T cells were down to like 300. That is when I started taking medication. To this day, I only take one pill a day and that has worked.

At the time I was diagnosed with HIV, I was also diagnosed with Hepatitis C. It was doing okay, I guess. Then I took this wonderful pill and now I no longer have Hep C. Praise God.

I got to know the virus; I got to know the people in the community. My case manager worked with me, I worked with them. My doctor worked with me, I worked with him. That means I shared whatever was going on at that time with me.

So, I been living with this—correction—the virus has been living with me for 26 years this October. I said I live with it; it lives with me. I don't bother it and it doesn't bother me.

What I mean is that I'm taking care of myself. I do what I have to do on a daily basis. As I said, I'm 68 years old. I still like to get out and help people. I help all the seniors that I know in my community and in my complex.

My family is what's important. When I came home, my family got together. We talked. I said, "If anybody have anything negative to say, say it now and we'll let it go. If you don't want to be around me, I'm okay. I got to deal with this. Nobody else."

My family has been very, very supportive of me and my substance abuse. In July, I will have 27 years of clean time. Praise God, Lord. Thank you, Jesus. I haven't used any drugs, I haven't drunk. I just came home and did what I had to do for Barbara. I got to know the virus; I got to know the people in the community. My case manager worked with me, I worked with them. My doctor worked with me, I worked with him. That means I shared whatever was going on at that time with me. Whether I had a headache or whatever—we talk about it.

I volunteered for four years in the community; then I became a peer advocate. I served as a peer advocate, and then I got an upgrade to an HIV case manager. I worked in the field of HIV, and then I went back to school to learn more. I took some college courses and was certified in child development. I worked with kids that had mental disabilities. That wasn't enough, I still felt like I needed to be fed, you know? I wanted more. I wanted more. Since drugs were a part of my life, I wanted to work on improving that. So, I went back to school and got certified as an alcohol and drug counselor. I worked in the field for about four years doing that. What I really wanted to do was combine all of that together. I took a few courses to learn about housing because I was previously also affected by that. I wanted to know how I could help others.

You don't have to go through having HIV or AIDS alone. Even if you don't have them, create your own extended family.

Finally, I started working with clients that were affected by HIV and substance abuse and got them into housing. Thank God the organization I was working with were very open to the community that they wanted to help. It was a big organization, a nonprofit organization called Community Connection Resource Center. They believed in helping people that were getting out of prison and who needed housing and jobs. They had to help people get jobs because there was a lot of stigma around that—both with substance abuse and HIV. You know, no one wanted to hire them because they were ex-convicts. However, this organization worked with other people that did not mind hiring ex-convicts. They served the community well.

During the course of all this, I was feeling better and better. I would go out. I would not let anything stop me. Nothing could stop me. I would go out and walk because I knew this was a part of my health. Anywhere I go, I would pick up paperwork. If I saw HIV on a pamphlet, I would read it.

I was born and raised in South Carolina. I left home in 1988. I went back home in 1998. I visited my ex-husband and, I asked him to be tested. Just by reading, I learned that HIV can lay dormant in you before it surfaces. I'm like, "Get tested!" He said, "I don't know if I have it or don't have it, and I'm not gonna get tested." I said, "Well that's not the attitude to have. This could save your life if you are sick. They can give you medicine or whatever." Some other people that I was raised up with and got high together with had passed away. I asked what they passed away from and what happened to them. People would say, "Oh they just got a cold, and it wouldn't go away." I would say, "HIV."

I got arrested in June of 1994. In the beginning of February that year I got really sick. I had been getting sick every year. Every winter I would get sick from the cold. I just thought it was a regular cold. I had a real high fever. I could feel the heat. I couldn't even get high I was so sick. I had drugs that I didn't even want to use the drugs I was so sick. I knew something was wrong, so I went to one of the guys I hung out with, and I gave him my sister's number. I did not socialize with my family during my drug use. I was homeless and that's what I wanted to be. I didn't want to socialize with them. Nevertheless, I gave him my sister's number because, like I told him, I thought I was going to die. He fed me soup even when we were homeless out there. He had a little tent set up and he went and bought me soup and stuff. He forced it down me. He helped me. Thank God he helped me.

I am always trying to lift one up because someone lifted me up. That's what you should do. You just keep helping one another instead of putting them down.

A counselor named Terry told me that I was seroconverting at that time. That's why I got really sick. The virus was coming to focus. That is something that I think people should look at if they get real sick. Since then, I get my flu shot every year. Any kind of vaccination, you know, I'm ready for it. That is what you have to do. So many people passed away in the 90s, the late 90s, and early 2000s. But today, because of these scientists or whomever, they have improved the medication. It has changed from taking maybe 17 pills, twice a day, down to taking two or three a day.

I was homeless for four years straight, pushing a shopping cart. That is the life I wanted to live then. I thought I was living. I did not know about Christie's Place or any other organizations like it. I knew about homeless shelters, but I probably would not have went in one anyways because I wasn't ready.

Now, after living with the virus and learning about it, I push others to visit Christie's Place and St. Vincent. I push any organization that helps others to let them know that they don't have to go through this diagnosis alone. There is somebody to help them. You don't have to go through having HIV or AIDS alone. Even if you don't have them, create your own extended family. I have so many people in my life as extended family. We call each other brother and sister. We are connected. We are a family.

I work with women. A couple of them still fight with living with the virus. Not wanting to share, not wanting to come out in the community. They just only come out when it's necessary because of the stigma. They don't want people judging. That's one thing we all should learn: not to judge others because we never know what God has in store for us. We be living good one day, and the next day it's all gone. I am always trying to lift one up because someone lifted me up. That's what you should do. You just keep helping one another instead of putting them down.

I work with a couple of women and to this day, I think they are better with life. They're getting out in the community now. I have not seen them, but I have heard that they are doing well in life. They got past the stigma because they realized they have to live. They realized that it was destroying them mentally by not sharing their status and not going out in public. Their man doesn't want them to share because they don't want the people to think that they are positive. Well, their men are the ones—the macho men that they call them—they are the ones who's going around passing this shit.

They go in prison and James becomes "Miss Jamie." But, when they get out of prison, it's back to James and then they have the virus. They've caught the virus because they're having sex. Men having sex with men. Women having sex with women. It's just ongoing. If you want to live that life, that's good. But, learn the dos and don'ts. Learn what's harmful. Learn what's helpful. It's your life, if you want to live it, live it. I support you. I stand beside you, but you have to be willing to make some changes. That's what we have to do! We have to be willing to make a change. In our life, change is hard. Some changes can be good, some can be bad. When you take the good with the bad and you put it together, it's all good!

I will be praying that whomever is struggling out there right now with stigma, please, please reach out and get help. Let someone else know that you are going through this and ask for help.

I have not dealt with stigma personally, but I have with others. Even with some men. Some heterosexual men. I learned from them because I used to come down to Christie's Place for the heterosexual support group back in 1996. I started coming down here in 1996 when Christie's Place was coming onboard. They were up on 4th and something. It was a little house, and our group had a room. Christie's Place has grown so big over the years. Thank God they've grown so big. Getting out there in the community, putting the name out there. Not only just putting HIV out there, but standing by what they represent which is helping families that are HIV positive. That's the main focus. They're helping families and then one family will help another family. In the heterosexual support group, I learned from the guys that before I got into a relationship, I had to learn about Barbara. I had to learn about Elaine. What is going to work for me? What did I want out of life with relationships? I haven't yet been in a healthy relationship, so I didn't know what healthy meant. I learned from a couple of them guys—who are no longer with us—about how men want to treat a woman, and how a woman treats a man. It's all about respect. They said to give respect to get respect.

That's what I would like to put out there, that it doesn't matter that you're HIV positive. It doesn't matter that you're in recovery for alcohol or drugs. The only matter is that you want to change. You want to change your life for the better because it's out there. You just have to reach up and take it. Learn to give and help those who want to help themselves. I know you can get it!

What I would like to end with is that I will be praying that whomever is struggling out there right now with stigma, please, please reach out and get help. Let someone else know that you are going through this and ask for help. Ask a lot of 'em! A lot of us don't want to ask for help because it makes us feel small or whatever. Instead, it shows that you want help and that you're willing to accept help. So, reach out to each other. Try to love each other and try to help each other.

Again, my name is Barbara Elaine Edwards. Thank you!