October 25, 2010
Welcome to This Positive Life! We have with us Rachelle McNair. In 2009, this mother of five was helping her youngest son settle into college when she came down with H1N1 influenza. She was rushed to the hospital, where she was also diagnosed with HIV. Her CD4 count was zero. While the doctors basically sent her home to die, Rachelle recovered with the help of medicine, support and her faith. A year later, this newly married church leader and recovering addict talks with us about cheating death, why ignorance around HIV is killing us and why she started her own group to build women's self-esteem.
Can you start by describing how you first found out you were HIV positive?
I found out in 2009, in the month of August. I was on the way to take my son to get him settled in college in Tallahassee -- I meant Jacksonville, correction -- and I got a fever. I started getting real sick and didn't know what was going on with me. My daughter -- once we got there, I couldn't go inside the dorm to even get him situated, or anything, so she rushed me back to Orlando, in which I live. And my husband took me to the hospital and found out; first of all, I was diagnosed with the swine flu.
From that point, they asked me did I want to take an HIV test. And I was afraid to take it at first, and I'd been putting it in the back of my head for years. My soon-to-be-husband, at that time, he was, like, "Take it. I'm not going to leave you. I'm here with you." And I took the test, and it came out positive.
You said you had always had it in the back of your mind. Why?
Because I had a promiscuous lifestyle. I'm a recovering addict. And I wasn't proud of a lot of things that I've done in my past. I had changed my lifestyle and everything, so I just wasn't thinking about it. I just thought I was safe now. Yeah.
So when you got the results, what did you think?
I felt . . . I thought . . . In my mind, I always had a fear of this disease, because my father passed away with it. And I always said I wouldn't want to know if I get it; I want to just die.
When I found out that I did have it, it was like a relief of something that I'd been fearing for so long, so the worst was behind me.
What did your fiancé say?
Basically, he was loving about the whole situation. His response shocked me, because I was like, this -- and we hadn't been together a long time, and for him to find out that this woman he's about to marry is now diagnosed with HIV -- and in my mind I was saying, "He's going to leave me. I don't care what he says. I know he's going to walk away and leave me."
But he proved me wrong. He truly proved that he really does love me and we're getting through this together.
So you're recently diagnosed. I mean, it's just been a year.
Just a year.
How have you been doing?
Well, I must say; it has . . . in the beginning, it was a roller-coaster ride. It went from fear to having to educate myself. Because I had a zero immune system, I stayed in intensive care for 16 days. They gave me up to die. Listening at family members come to visit me, saying, ". . . pulling out a black dress," and "How are we going to get the body back to Fort Lauderdale?" And all of those fears. I guess my faith's what really got me through it. Because I am a Christian and I started believing more in the power of a Higher Power, and determining that this is not a death sentence.
From listening at the providers, the care providers that I had, they explained about the different medications, and if they can get them in my system, and if my body adjusted to them, that I can live a healthy lifestyle. And I did whatever it takes, to pay attention and do whatever they told me to do, because I wanted to get better, and not bitter.
How long do you think that you had been positive, and just didn't know?
From my test results, and viral loads, and CD4 count, it had been in my system for at least 10 years. Ten years.
And you had never been offered an HIV test before?
I had, but it was the fear, the fear. And that's why I guess, out of this whole thing, after me being so ignorant -- when I got better, I founded an organization called Women of Worth. I do workshops, and I go and bring the churches and the communities together in the awareness of HIV and substance abuse.
We're going to get to your work a little later in the interview. I want to kind of go back to your past. You were an addict?
How long did you use?
I was a late bloomer with being an addict. But however, it became a strong addiction; it went from one thing to another. Started off with marijuana; took powdered cocaine; and then to eventually the rock, which is crack. I guess I had gotten to a point where I just gave up. In that lifestyle, I wasn't the type that walked the street, or whatever, but I had a lot of partners and stuff to get whatever I needed.
Why do you think you were using drugs? Was it to self-medicate?
No. Actually, my mom . . . I'm a nurse by trade and my mom got sick and became a vegetable. I took her in, quit my job, and I started taking care of her. I was taking NoDoz to like stay up at night, to feed her through her stomach. And my sister offered me cocaine instead of taking NoDoz. It was fine while my mother was still living, but when she passed, it turned into a habit, and an addiction.
So both your parents had died. How were you dealing with that?
Well, after both of my parents died, it was a little hopeless. And I guess I was numb to everything, because through the whole process of them dying I was literally high all the time. I guess reality set in when I became sober and I'd think about it in a sober aspect. That's when I started feeling feelings of loss.
You started doing drugs at what age?
Twenty-five. And when did you stop?
How old were you?
I was . . . I'm now 41, so I was, like, 35.
So you had really been doing drugs for, like, 10 years.
Can you kind of talk to me about your father's death? How did you know it was HIV? Sometimes people say it's cancer, and it's not.
No. Actually, I'm his oldest daughter. I found out because the Health Department came to my house. He was living with me. This was back when it was, like, new. He got diagnosed; it was like in '95, up in that time, where they came to my house and they told me and my grandmother, which is my father's mom, that they were looking for him because he was HIV positive. He had slept with someone that had transmitted the disease, and they gave his name. And I guess from there I was just . . . I remember just bawling and crying, and crying, and saying, you know . . . and I'm a daddy's girl, so I'm attached to my father, so it was really hard for me to accept that he had it. But he actually lived a long, long time. And he just passed in 2005.
OK. So what did you know about HIV when the Health Department came to your door?
It's sad, because I didn't want to know anything about it. When they came to my door, I just didn't want to. I was in denial; didn't want to think about it. We prayed about it, pushed it under the rug, and just kept going, you know?
Why do you think that happens?
I think mostly because of fear. Fear. Fear of being exposed. Fear of the outcome. And ignorance. Because, I guess, when I got diagnosed, I didn't know that the medical science has evolved so much with HIV that the lifespan has also increased. All I knew: It was a death sentence.
Even in 2009? You still thought that HIV meant a death sentence?
Yes. Because my father, they wanted him to go on, like, 15 or more pills. And that's all that kept going through my mind: I didn't want to take all those pills. You would hear stories of people, like, can't hold anything down, and they're losing their eyesight, they're losing this . . . and I just didn't want to deal with none of that. So I just said "Out of sight, out of mind."
Let's go back to your drug use. When did you decide enough is enough and I'm going to try to get clean for good?
Actually, that came out of losing my nieces and nephews. Because I had custody of them. My family noticed something was wrong with me. I would sit up for days and get high, and stay in the house and comb my hair; wouldn't do anything.
So they didn't know?
Or, they just didn't say anything?
They knew, but they didn't say anything, until finally, one of my uncles -- it's my best uncle in the world -- he came down from Atlanta and saw my condition. And he thought he would do intervention, by calling the police to take my sister's kids from me because I was under the influence, taking care of them. I had a warrant for my arrest, and I got arrested. And I lost them. I lost my children, lost my house, lost everything in one day. And I went to jail.
And then it was like the light bulb went off in your head?
Not immediately. Not immediately, because I was in denial. See, I didn't think I needed help. I really didn't. I didn't think it was that bad, until the judge . . . I went through a drug program. I was sentenced to go through a drug program, the ATAC program, in Broward County Jail. It was an intense drug rehabilitation program, which teaches discipline. It had, like, hours and hours of intense studies on substance abuse. People from the outside would come in and talk about the use of drugs, and the effects of the use of drugs.
From me listening at the stories, I started sitting in the back. Because it was mandatory that we attend. But as time progressed, and I started listening at the different stories, and I'm figuring out, and looking at people that have productive lives, and how they lost everything through the use of drugs, and ended up . . . At that time, I didn't know I had HIV, but there were stories of people with HIV, with drugs, at that time. And I just was, like, "I'm not one of them."
As I kept hearing and kept hearing their stories, I said, "Well, maybe I do need some help." And one night I shared in the meeting, and I guess all the emotions started coming out, and I determined I was ready to get clean.
What was the process of recovery like for you?
The process of recovery? It was easy because I had my mind made up by the time I got out. I went through two intense drug programs inside jail. So by that time I heard enough stories, and I met some wonderful people. My kids: like I said, I'd done lost them. So I was required to do a lot of stuff, and it was going to take me to have to be focused.
It was easy because, when I came out, I didn't have anything -- but I had a sober mind. And I think that was the greatest thing. Because I had a sober mind, I came out thinking I can win, which I did. I found myself when I was in jail. I found out really who I was, and what brought me down, the consequences of my actions.
So let's fast-forward to when you were diagnosed. When you were diagnosed, you were shocked, but not really. You kind of had a feeling. So, did you disclose to anyone at that point? Did you even know who you could trust?
No. No. I never talked about it. I was having -- as I realized, once I became diagnosed, when I learned about different symptoms of HIV -- I was having a lot of symptoms, but didn't know where they were coming from.
Throughout the years?
Yeah, throughout the years. And I would just think it was just because some, you know, this or that.
What kinds of symptoms were you having? Frequent yeast infections and things like that?
No. I was having, like, skin rashes, a problem with memory, leg problems -- just a lot of little stuff. And it was mounting up to big stuff. And I would catch colds all the time, all the time. Couldn't get over a cold.
You disclosed to your husband -- your fiancé at the time, and he was really supportive. What about your children? Did you tell them?
My kids were the hardest ones to break the news to.
It's OK. Take your time.
My kids were the hardest ones to find out, because I knew they would have to live with the stigma of their mom having HIV. And they looked up to me so high, no matter when I was on drugs, or when I was healthy; I was always the hero. I was a single parent, and all they knew was Mom.
When they received the news -- because they were living in Fort Lauderdale; I had just moved here to Orlando -- and they received the news, and the news that they got was inaccurate. They told them that it was inaccurate, in some ways. They said that I looked like I was wasting away -- which, I didn't look that away.
So who went back and told them?
Yeah, because I called two of my aunts up. I didn't want my kids to see me right then. I would call the family, my aunts, and I wanted them to go back and have a family meeting and let everybody know what was going on, and to call my kids, and gather around family members so they'd have some support and everything.
My son, my baby son, had just went to college. And I was thinking about him the whole while, and this affecting his college. Because he did; he left school when he found out I got sick.
But what was their response to your diagnosis? Were they devastated?
Well, at the time, like I said, they weren't here. They didn't live here with me. But when I did get sick, I lost my eyesight and ability to walk. I couldn't see anything, so I needed help. My fiancé was here, and he needed help with me because he was working two jobs. Two of my sons came up. And I did get to experience one of my sons, my middle son, breaking down and weeping and crying. He was like, "Ma, you're too good for this. Why did this have to happen to you?" But he also was one of my greatest inspirations, because he encouraged me through it all. And he always said, "You're going to pull through this. You're going to pull. You're strong."
OK. Yesterday, we left off talking about your children, and when you had tested positive, and you were in the hospital, and they were telling you they didn't think you were going to live. Your kids had come. How important was it that they were there for you?
That was very important for me because my kids -- I was a single parent, and that's all I know, is my kids. And by that time my mom and dad had both passed. So my kids were my life at that time. So it was very important.
And they thought you were going to die.
Did you think you were going to die?
I know that you said that your aunts had been giving misinformation back to the family. What had they been saying?
First of all, it was my favorite aunt. She came and I guess I was hurt, because her response towards me, when she found out what I was diagnosed with, she was like standoffish. She didn't kiss me, didn't hug me, and immediately went back and gave my kids, I mean, the worst version of what really was going on. And that hurt me, because I didn't expect that to come from her.
Have you made amends with her?
Yes. I'm fine with her. I'm fine. Because I've learned that was ignorance. That was ignorance. And that's one of the reasons why I chose to be an advocate for HIV. Because I once was there, too -- very ignorant about this disease and the care of how we're supposed to treat each other when we're sick like this, you know. And the greatest thing you can do for a person that's dying is love them . . . unconditional.
You got better, though.
So what happened?
What happened: I actually was in the hospital. Like I said, they gave me up and everything. And I guess my fiancé at the time, he is a bishop and pastor of a church, and his faith is what helped get me through. Because I never saw fear in his face, no matter how many reports that came and said that it wasn't going -- I was going to leave here. I didn't believe I had the strength without him. I didn't believe that I would have made it without looking into his face, and him encouraging me and telling me I'm not going to leave; taking the doctors out of my presence when they talked. Whispering. I heard a lot of whispering. I knew something was seriously wrong, but I didn't know the degree because I was in and out of consciousness. So I didn't really understand everything. I was just solely riding on his faith.
Did they give you treatment?
Yes. I ended up getting treatment. I was real, real sick because, like I told you, I had the swine flu on top of HIV. My immune system was wiped out to zero. So no one could just come in my room and just . . . If they were to sneeze on me I would leave here.
I was in pain constantly, so I was on a lot of pain medicine, as well as some of the highest HIV meds that they could give me. Plus, fighting the swine flu on top of that. I went through all kinds of tests. I had lost my vision, ability to walk. I couldn't hold down anything. I think prayer is what really, really brought me through each day. Sixteen days in an intensive care unit, with a fever of 104 degrees. They couldn't ever break the fever. That was one of the main things that the doctors were very concerned about -- the fever they couldn't break.
And so, you got better. At what point did you get to go home?
When the fever broke. When the fever broke. They were saying I can go home once the fever broke. But the sad part about it: I knew that they were sending me home just to die, because they weren't optimistic about my survival rate. They just wanted to let me go home and . . . die, in other words.
But you didn't die. And this was like a year ago?
It's amazing. So when did you feel back to your regular self?
Oh, it took a long time. I had a lot of symptoms, see, when I went home, such as: I couldn't see that well; I couldn't walk that well without assistance; I still didn't have an appetite. I was weighing 116, when my normal weight size was like 135. I was at 116.
I got on the medications. They immediately got me in the Healthy Program [sponsored by] the Health Department and I started taking medications. Good thing I didn't have any adverse effects from the medication. It started to build a strong immune system.
Because your CD4 count was basically, like, zero.
Zero, right. Zero. And from that point, I just followed the prescriptions of the doctors: followed up with all my appointments; take my medications . . . with my spirituality. And greatest of all, I had a fighter inside of me, and I wasn't ready to go.
How did other people in your family react to you?
You had some that felt pitiful for me. Then you had some that . . . I couldn't even understand what they were feeling, because they were like numb to it. And I was the big sister; out of my siblings, I'm the big sister. So I'm like the mother figure. So I know they were feeling a lot of stuff but they wasn't talking about it, a lot of them wasn't. I'm learning that HIV is something that a lot of people are not comfortable with talking about, still, today. In 2010, we're yet breaking discussions over the table about HIV.
And so when did you feel well enough to start your own Women of Worth?
It had to be, like, six months after my diagnosis. I started getting a little better. And every day, I would read my Bible and I would make myself get out of bed, and do my hair, to make myself feel worth something. I just had this mindset that it wasn't going to take me under. And I started saying, "What can I do to make a difference with the little time I do have?" Because, like I said, at that time I didn't know when I was going to leave. So I just wanted to do something to contribute to this cause. And I wanted to be a fighter, and I wanted to survive. And then, I wanted to learn to live and not survive.
Tell me about Women of Worth.
I always struggled with a lot of depression, low self-esteem, family issues, single mother issues; and I realize that those are a lot of barriers, too, that cause women to do things that they're not proud of, sexually, that cause this disease to be transmitted -- such as selling their bodies, and doing stuff like that. So I was, like, if we can empower women to have a better attitude about themselves and let them know that they're worth it, you know, maybe we can stop the stigma of HIV.
That's what I do. I empower women and build their confidence up, and let them know they're beautiful, regardless what situation they're in.
What's been the reaction to the workshops?
It's been very powerful, very powerful. I didn't know that I would get the response that I've been getting. I mean, to really be in a church setting with somebody really talking about it. Because a lot of people is not talking about this disease in church. And that's the barrier that we are trying to bring down: to bring the community and the church together to openly discuss HIV, sexually transmitted diseases, to save someone's life.
And the Bible also tells us our people are perishing because of lack of knowledge. So we need to bring the knowledge to our religion.
What are some of the things that you've seen that some of the women in the church settings have been going through?
Everything from abuse, rape, low self-esteem, poverty, neglect, mental illness . . . everything . . . a lot of factors. It's so much that women are going through and struggling, just in their own gender, but they don't talk about it a lot. We put on makeup and we cover it up with mascara, lipstick, eyeliner. Get the best weave job you can get. Put on the best clothes. And we think that means we feel great. But there's so much greater going on in the inside that, when you strip it all off, you do not feel pretty at all about yourself.
How is your health now?
I am doing wonderful. I'm blessed. Because I'm undetected.
In one year. And they said that I wasn't going to reach there.
So you went from, like, a viral load of probably, like, a million, to now being completely undetectable.
Undetectable. Undetectable. At my doctor's office, they call me the miracle girl, you know. Because even some of the secretaries actually told me themselves that they didn't think I was going to make it. They was betting on how long I would be there. Because I would be carried into the doctor's office. And it's only been a year. And when I began to say I wanted to do something about it, I took charge of my life. And I began to learn everything that I can about this disease, where it won't happen to someone else.
I became a part of the CAB Committee at my doctor's office. And I'm the chairperson for that. And it's just been awesome. The more knowledge I'm gaining about it, it looks like . . . I mean, there's no mountain that I can't leap over. I have energy. I'm motivated. And I don't think about everyday issues; I'm just living every day in the moment, and thanking God for another day.
Do you ever get sick of talking about HIV?
No. No. And I had someone actually tell me I wouldn't tell my story. And I said, "Wow. Why wouldn't I tell it?"
Oh, they were telling you not to tell your story?
Yeah. Yeah. Some people look at me and go, "But I wouldn't tell nobody that." But I say that's selfishness to me -- if you don't tell someone about this disease, and what it does. It doesn't matter who I am, what my title is. And if I have love like Christ's love, I don't want this to happen to anyone else.
I have a daughter. I have one girl, and four boys. And I wouldn't want my daughter to ever experience this . . . well, for that point, no one to ever experience this. And, as me being a woman, and I thank God . . . She just did a story on me for her class project in college. My heart just goes out to her. Because she's very much been an inspiration in my life, you know.
Since your diagnosis have your children been more involved in HIV? And have they been more open about using condoms and things like that?
Definitely. Definitely. I mean, I've got bundles and bundles of condoms that I give out at my workshops and stuff. And my children are, "Ma, give me some condoms, then." We constantly have discussions now. My disease has brought me closer to my kids, very much so. And now we're in it, we talk about things that we should have been talking about a long time ago -- you know, sexual activities, and what's going on in their lives, and what kind of partners are they choosing. And that plays a great role. As a mother, I'm glad that I'm able to share.
What has doing HIV work taught you?
Mmm. It has taught me so many things. It has taught me I was so ignorant. It has taught me that, I mean, that the tools that I receive from learning is one of the greatest missiles that I could use against this disease -- you know, the awareness.
Going back into the community and getting people, encouraging people, to get tested. I give out pledge sheets, and try to get people to pledge to get tested. And I'm also getting ready to go into trying to get some assistance, where I can get volunteers to come in on a regular basis at our churches, and have people tested.
Did you get married?
When did you get married?
I got married October 12.
Oh, so it's almost coming up on a year. How does your husband support you emotionally now? Now that you're well, what are the things that he does to get you through?
Some of everything. Some of everything. I must say, I've never thought that someone could love someone the way they love someone when they're sick, but he has proven to me that love covers a multitude of faults. Because he has been by my side since Day One. And he is constantly there. I have days when I don't feel so good, and I have days that I do feel good. He's there on the days I don't feel good and the days I do feel good, the days when I don't feel like putting on makeup, the days I do feel like looking glamorous. But he's been there.
He's awesome. He's awesome. Because he encourages me in the Word, you know. And he constantly -- he builds my self-esteem up so much, because he would not allow me to hold my head down, at all.
Has he ever been afraid that he's going to become infected with HIV?
If he has, he's never mentioned it. Because when I got diagnosed, you know, they sat both him and I down. He's negative; he's not positive. And you know, there's a safe way of doing things, and they showed the safe way of doing everything; and it's no problem. We just do the safe way.
You said he's a minister?
How has the congregation been toward you since you've gotten sick?
Wow. My congregation loves me. Loves me. I mean . . .
Because you're like the mother of the church, basically.
I have never met a mother of the church that's been HIV positive.
I mean, that really . . .
That could have made people leave the church, because of the fear. But they didn't leave.
No. Because I think, in our congregation, it's made people more curious about their own sexual activity. And not only that; it causes them to join the cause I have. And they've all been tested, you know. My story alone I think is getting attention. It's getting their attention. And they're learning that . . . I'm taking away all the ignorant barriers. You know, I don't want them to think that because you're around a person that you can catch this, or because of this and that.
And that was what a lot of people were thinking for a long time. And it's not so.
What advice would you give to someone who's just tested positive?
The advice I would give to them: Don't give up. Learn everything you can about this disease, because you can beat it. You can beat it, through your knowledge, and through you working along with your health care providers, and sharing what you experience.
And with that, we have to bring this interview to a close. It's been such a pleasure. Thank you so much.
This transcript has been lightly edited for clarity.
Kellee Terrell is the former news editor for TheBody.com and TheBodyPRO.com.