Coping When AIDS Hits Your Family

We round out our series with a look at one family dealing with an AIDS-infected loved one. Farai Chideya talks with Carla Bailey and her daughter Jamie Bailey-Rataj. Carla is a mother of six who has been battling full blown AIDS for more than a decade.

Now, we wanted to take a personal look at what happens when these kinds of statistics hit home. How do families cope with a crisis that comes and stays like a chronic illness? Today, the last day of our family series. We're talking about AIDS.

Thirteen years ago, Carla Bailey learned she had full-blown AIDS. She was a mother of three and at the time, she decided to keep the news from her family. Carla, welcome.

Ms. CARLA BAILEY (HIV Survivor): Thank you.

CHIDEYA: So, can you describe what you felt when you got your diagnosis and then why you kept it from your family at first?

Ms. BAILEY: Well, first, it was an extreme sense of denial, that I wasn't infected, that I didn't have anything because I had no symptoms. Once going on medication after the second test and getting a thorough, yes, you have full blown AIDS, there was immediate depression, but I had to cover it because of my kids. I have an older son, he's five years older than the other two and he kind of figured it out on his own, but he didn't say anything. The only person that I could really talk to was my sister, who is a health care professional. She's my oldest sister. And her and I kind of walk though it together and she convinced me that I needed to tell, first of all, the rest of my siblings and then of the children, who should I tell? And so, we decided first just to tell my siblings and my oldest son.

CHIDEYA: How old was your oldest son at the time you found out?

Ms. BAILEY: He was in college, so he was in his 20's and working for a women's project - as a matter of fact, he worked with women with AIDS and HIV. So, we had a family barbecue and we talked about it and I just told them I had full-blown AIDS.

CHIDEYA: How did your family react?

Ms. BAILEY: Well, my sisters were okay with it because they're very religious women, so they figured whatever's going to happen in your life is going to happen in your life. That was the first time ever I saw to all of three of my brothers, break down and cry. And that was hard to watch, it was really difficult to see. And I remember one of them walked up to me, he grabbed me, put his arms around me and he said, oh my God, Carla, what are we going to do? And I told him, we're going to live until we die. That's what we're going to do.

CHIDEYA: Now, I want to bring your daughter into the discussion. Jaime Bailey-Rataj had just graduated from high school when her mother broke the news of her illness. Hi, Jaime.

Ms. JAIME BAILEY-RATAJ (Carla's Daughter): Hi, how are you doing?

CHIDEYA: I'm doing great. You know, how did it affect you to know that this thing had hit your mother and that she'd - I understand it was two years before she told you?

Ms. BAILEY-RATAJ: Yes. She waited some time. I knew she was sick but I didn't know from what. And she just kept telling us that we're going to be all right, my mom's a strong person. So, we just thought everything was okay and just kept, you know, going through life. And the, when I did find out, I didn't - my first instinct was to find out more information, because it's my mom. And, you know, you want your parents to be around you throughout your life. And, I was still fairly young, just about to go into college. And I just - I definitely needed her more at that time than ever, so I wanted her to be around.

It was very hard. It was very hard. I remember watching my mom sleep, scared not knowing what was going to happen, and just praying over her. I didn't - it was nothing really more than I could do to just be there for her, so she didn't stress out or, you know, think about it too - I mean, how can you not think about it, you know? But just try to make every moment count.

CHIDEYA: So you were getting ready to go to college. Did you end up moving away from your family geographically or did you stay closer to home?

Ms. BAILEY-RATAJ: Oh, no. I stayed home. I didn't go to school too far from where I lived. It was - school was just like a bad time for me to go to school at that time because I was stressed out myself and I didn't realized it until several years later. But it was a very difficult time. I stayed home for that purpose, to be close to my mom.

CHIDEYA: Now, when you think about how you reacted with your friends, did you let people in on this? Did you sit down and discuss? I mean, a lot of families have people with HIV, but some people really don't talk about it. Did you open up with your friends?

Ms. BAILEY-RATAJ: You know what, I first consulted my mom. I did not want to put her business out there on the street without speaking to her and seeing where she was at with it before I told anyone, because this is her own personal business, you know? But my mom, she's always been a very open person. She would talk to my friends when they came over about being safe and so forth. So if - Dave, my husband now, I've been with him for over 10 years, when I met him, I had to explain it to him and educate him on what I knew and tell him about my mom. So he's aware, you know, just so everyone, you know, spill secrets. We don't keep secrets. It's not something to be ashamed of. It's life. Things happen in life.

CHIDEYA: Carla, you contracted HIV through contact with your longtime partner, your - he was not - you were not officially married, but he was like a husband to you.

Ms. BAILEY: Right.

CHIDEYA: How did you then move ahead - and you now have a leadership position in dealing with HIV/AIDS? Tell us about that and tell us whether it's helped you in that kind of outreach work to share your story.

Ms. BAILEY: Well, first, I had to come to grips with the fact that I had nobody to lash out to or talk to in terms of being - of contracting the disease, because he died before I found out anything was going on with me. And that itself was - I just went inward. I was like, okay, what do you do? Do you lay here and die or do you get up and you keep living? It took a minute because I did go to depression. I had depression for three years, as a matter of fact, very difficult depression, where it came down to, initially, we lost everything - house, cars, all of it. I lost my job, I couldn't work, had a lot of stuff going on. I was having trouble with medications, I ended up living with my older sister, who is a health care professional and she walked me through a lot of this stuff, even the crying in the middle of the night and all of that stuff. And finally one day, watching a movie, I kind of got inspiration to get off my tail and get up and start living.

CHIDEYA: And now, you are working with L.A. County's HIV Commission.

Ms. BAILEY: I am the first African-American female co-chair of the Commission on HIV in Los Angeles. I speak with a group called Positively Speaking not as much anymore because I have a lot of work with the commission. But there is a group with L.A. Unified School District called Positively Speaking, where I speak to kids from middle school all the way through college about HIV, the contractions there.

I don't hide anything from them. I - if they have a question, there is not a question I won't answer for them, because this is something that everybody needs to understand, it is everybody's responsibility. For those of us that are infected, it makes - it should make us responsible to be able to talk about it. We're not the disease. We are people with the disease. We have to be open, and I think in America especially, we have to become more open in talking about sexual things, how things are transmitted, what could happen.

Not to say that abstinence is not a bad conversation to have, but you also need to educate your kids about sexual things because eventually they're going to get there, and you either want them there with as much information as you can give them or you send them out there ignorant. And this can happen to anybody.

CHIDEYA: You have not only moved forward with your life in terms of your health, in terms of leadership, but you've also adopted. Did your HIV status ever become an issue during the adoption?

Ms. BAILEY: Well, I was in court four years through the adoption process and my HIV status didn't become an issue until I got to the adoption court. And I remembered the judge saying to me, you have stellar reports from family services, the adoption agency thinks you're wonderful, and you've got a really excellent record with. I have one concern. And I said to him, that I'll stop you right there. He said yes. I said you're concerned about the fact that I have AIDS? He said, well, yeah? I'm like, okay, so can I ask you a question? He said, yes. I said, okay, so how old are you? I said, a matter of fact, you don't have to answer that. You're above the 50 mark, right? He says, yeah. And I'm like, do you know when you're going to die? He said no. I said, neither do I. But I have life in my body. I have love in my body, and these kids I want with me. And so he smiled at me and he said, okay, let's sign the papers.

And I walked out of that courtroom with what is biologically my brother's three kids who have been with me since they were almost 2, four months and one came straight from the hospital. They are doing wonderful, they're in school, they're in music, they're flowing. And I think, for me, they give me more reasons to stay here and do everything I can to save a generation that we may lose. It may be even two generations, but it's important that each generation be better than the last generation.

CHIDEYA: Well, Carla, Jamie, thank you for being so open and inspirational.

Ms. BAILEY: Thank you.

CHIDEYA: Carla Bailey and her daughter Jamie Bailey-Rataj. Carla has been living with AIDS since 1992 and she is doing just fine with the strong support of her family.

(Soundbite of music)

CHIDEYA: Next on NEWS & NOTES, one psychologist offers advice for families living with HIV and AIDS. And is Whitney Houston headed for a comeback? Is R. Kelly headed back into another sex scandal? We've got Allison Samuels with the latest showbiz news.

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