September 19, 2012
What's it like to raise babies as a woman living with HIV? The past 15 years have brought studies that have shown, beyond a shadow of a doubt, just how low mother-to-child HIV transmission risk can go: less than 2 percent with the help of HIV meds and rigorous prenatal care. Despite this miraculous development, there's still abundant stigma directed toward women living with HIV who choose to become biological parents -- and there aren't many avenues for reaching out to other women who've been there.
Enter Angela Davey of southwestern Minnesota; Jessica Mardis of Mobile, Ala.; Rusti Miller-Hill of New York City; and conversation moderator Shana Cozad of Oklahoma. These four moms were all diagnosed with HIV in the 1990s, and each has given birth to (HIV-negative) children both before and after becoming HIV positive. In this conversation, the four women share experiences from after they gave birth -- stories of parenting their kids and taking care of themselves.
This is part two of a two-part conversation. Read part one of the conversation, in which the moms compare notes on where they sought support while pregnant and how they coped with the first uncertain weeks of their infants' lives.
Shana Cozad: Do you feel that, if there was a young woman in your community that was thinking about pregnancy, and she was HIV positive, there's enough of a structure today that would be available to her? Angela, I know you said that you're creating a women's group, and that resource for women.
Jessica Mardis: Honestly, I can't really say 100 percent that I know that, since I'm new to this area. I just moved over to Mobile. I find a lot of my support now with my partner, whom I met two and a half years ago on POZ.com. We're in it together. He's been positive for 20 years. I don't go to a support group. I know that I would personally be here for anybody, if anybody wanted to talk, because I am open about it.
Angela Davey: In our community in southeast Minnesota, like I was saying, we don't even have an HIV support group, period -- much less designed for women. However, what's so contradictory is, if you're on state-funded health care, which some are and some aren't, you have Mayo Clinic. And they do have excellent HIV care within their infectious disease clinic. As far as medical support, it's abundant.
Jessica Mardis: I find that same issue here, in Alabama, or in the Southeast. I don't go to the clinic here that offers ADAP [the AIDS Drug Assistance Program] and free health care; I have insurance. So my doctors are more reserved. There are no brochures sitting around. They don't really advertise that they even see HIV-positive clients. But they are very good at what they do. So it's sort of a separation. If I was getting my medication through ADAP, I would probably be more in tune to the services that are here.
Angela Davey: Mayo Clinic's the same way. I'm working with them to change that. Because within their infectious disease department, where the HIV clinic is held, there's absolutely nothing that would indicate that it's an HIV clinic. Whereas if you go into any other area, they have brochures like you wouldn't believe. Anything for HIV, you have to go and ask them, and they pull it out.
I'm really trying to work with the medical community to approach this differently, and try to get them to see the benefit of treating this as a medical condition, not a moral issue.
Jessica Mardis: Right. The stigma that they're placing on HIV by withholding those resources is clear.
Shana Cozad: We have an HIV clinic with infectious disease doctors, and then we have a couple of doctors that are outside of the infectious disease clinic that are just private. With the private doctors, it's the same issue. It feels very clinical. You don't get the sense that you're part of the HIV community. If you're with a private doctor, you're just dealing with an infection, an HIV infection.
Jessica Mardis: Don't think they can't be good at it; they might be very good at what they do. Because my doctors, I mean, they're some of the best. But you don't have that social support. You just have the medical stuff. And it's so much more than that ... or at least, it should be.
Shana Cozad: Yeah. Even though this disease is only 30 years old, that community was established and is there. We still need it. We absolutely still need it.
Jessica Mardis: Yeah. But it still is a real thing that people are so afraid to come together and talk about HIV. At least, when I was in Mississippi, that was the case. People just don't want to; they just deal with it on their own. And it's so unfortunate, because you can't deal with it on your own. We need that support. Without that support, I don't know where I would be, honestly; I would probably be dead by now. You know? I mean, without people believing in me.
And, honestly, one of the biggest believers in me was Charles King from New York. You probably know him.
Rusti Miller-Hill: Yes!
Jessica Mardis: He instilled things in me that made me go get an education and believe in myself more. It's people like that that inspire people to say, "Hey, you know what? I'm not alone. And even if other people aren't willing to speak out, I'm going to speak out. Because why should I continue to be quiet?"
But one thing I think about, as my son gets older, that's a battle within me, is that you don't want to stigmatize your children. How do y'all deal with that?
Rusti Miller-Hill: It's funny that you brought that up. I've been in the media and on TV. I've made videos about living with HIV. I've been very open about my status from the very beginning, even when I was pregnant with my son. He's grown up seeing me speak out in different places. I used to drag him everywhere I went.
Now he's 17, going on 18, but since he was maybe 15, I've had to really, really reconsider and think about all that. He's dating. He's looking at girls. And we talk about HIV; it's not a secret. Everybody knows Mom's positive, down to the grandkids. But for him, whereas, when he was younger, when I was going out to speak, he'd say, "Ma, can I go with you? I have something to say," now that he's gotten older, he doesn't want to talk about HIV. He doesn't want to be associated [with it], because he understands the stigma and the discrimination. He's still struggling with, "My mom has HIV."
You hear people talk. Just because I openly disclose my status doesn't mean that I walk around with a sign every day: "Hi, I'm HIV!" They meet me, Rusti, the person first. And if they know, they know. And if they don't, I don't bring it up. It's not the topic of conversation. But to hear people who don't know have a conversation around HIV, in general, can sometimes be very disheartening. While I might take that as an opportunity to educate someone, I think my son deals with it like, "Oh, my God. If they knew that that was my mom ..." You know what I'm saying? He still struggles with, "I want to protect my mom, but I hear what my peers are saying. And I don't always want to be the one to educate everybody. So I'd rather stay silent."
So now, when I have an opportunity to speak on TV, or to do a presentation or something in the community, I go home and I ask, "Is it OK with you?" There have been things that I've turned down because his friends might have been there, or people that he knows might have been there, and he's not ready yet. I don't want to push that undue pressure onto him. Because I already pressure him about using a condom, always; and about him having documentation from the CDC that says that he's HIV negative; and that part of his conversation to young ladies that he encounters be: "Have you been tested for HIV?" Because that is the reality of the world that we live in. So he's got a lot already.
So we choose when we disclose, and if it's important enough for us to disclose. I've gotten to be very mindful of that.
Angela Davey: I also go up and do public testimony, and talk to our legislators, and try to educate in various different avenues. Often, my story is shared with them, and I've taken my daughter with me to those events. I've approached Rotary Clubs, and such places, where I've spoken to closed, invited groups, and she's been with me. I home-schooled her this last year, so she attended all my board meetings and is very enthusiastic about participating and education. So I have a little activist on my hands.
However, on the flip side of that, when she was little, depending on what was appropriate for her age, as far as understanding, it used to be that all she understood was that mommy had a bug, and the bug ate other things in her body, and it made her sick. That language was immature, but she understood.
As my complications and coinfections have become more prominent, and I spend more time managing them, and they're more visible, we've begun to talk about it quite a bit. We do check-ins. Because even though she's had this knowledge and awareness, it has changed as she's gotten older, and her understanding has grown; she can physically see differences in me that, before, were more invisible. So there have been different stages. Just like there are different stages of chronic illness, there are different stages of working through it as a family unit.
She's going to be 11 at the end of July. I'm glad Rusti brought up how her son had a shift in wanting to talk about HIV -- that shift that coincides with the teenage years, puberty and sexuality. That gives me a heads up! This is where I love being able to talk to other people in similar circumstances. Because it gives me a heads up that I may encounter this, and probably should be aware of that -- where I probably wouldn't have, if Rusti hadn't shared.
I've also been on TV, and spoken on World AIDS Day. Doing it in Rochester and doing it in Minnesota are not quite the same as if I was in San Francisco. I've had backlash from the community. I've had things thrown on my yard. I get posts on our fan page that say ignorant things. In school, she entrusted one person with the information that her mom was HIV positive. It's strange what kids often experience when they're learning to form relationships outside of their home -- the whole trust issue. That person told their parents and their reaction was that they didn't invite Lilly over to play after that.
We had a talk about that, and how that made her feel. Even though she is negative, HIV does affect her life. Because I am active, and especially because I'm getting ready to do this huge endeavor that will probably encompass the health department and many other different entities, I'm probably going to be exposed even more than I was. Because that's what I'm trying to do, is get people to be aware, and just realize that HIV exists. So I'm trying to be aware of how that affects and impacts Lilly, as well.
But can I share one thing real quick? I did have something happen that really floored me. When she was about 5 -- this was about the time she went from understanding that I had a "bug" to calling it a "virus" and using that language, but she still didn't really get HIV and understand the stigma behind it. She also didn't know at that point that my partner of 10 years wasn't her biological father. I hadn't shared that with her. I was waiting. It was just something I was not ready to do yet.
We went to a doctor's appointment for her. We'd been referred to an asthma specialist. He was, of course, looking through her medical record. I, my partner, and Lilly were present in the room. And apparently, he just started reading out loud what he was seeing in her medical record, and asking questions: "So, I see her father died of AIDS. And, you're infected."
Lilly turned to me and just had this shocked look. "What do you mean? My dad's sitting right there." And then, she hadn't heard the word "AIDS." She knew "HIV" and she knew a "virus." But what really bothered me was, one, the disclosure. We were there for an asthma appointment. She's HIV negative.
Rusti Miller-Hill: That has nothing to do with it.
Angela Davey: Absolutely nothing to do with the circumstance that had brought us into this doctor's office. Plus, he had just robbed me of my power of explaining to her what was a very difficult and complicated time period. So, we recovered from that. I explained what I could. And each year, for a couple of years, she would ask a couple of questions about her biological father. I always tried to keep it positive, and do all the things you should do. But honestly, I can say I'm still angry that that was taken away.
Shana Cozad: Oh, yes. I would have been infuriated, and I would have made a big stink about it. That was completely unprofessional.
Rusti Miller-Hill: Absolutely.
Angela Davey: That's why I push so hard to try to educate people. If you're reading this and you're pregnant, or you are thinking about becoming pregnant, but you don't know your status ... I think everybody should know their status. I think it should be part of just the regular blood draw, done at your annual exam. Because if HIV is going to end, it's got to start ending with us. And when I say us, I mean each person knowing their status and then acting accordingly from that.
My experience hasn't always been that great with health professionals, as far as their sensitivity.
Shana Cozad: Long way to go in that department.
Angela Davey: Yes.
Shana Cozad: Now that our babies have been born, and we've gotten through the whole testing phase and the AZT phase, and now that we've got full-blown children, or even teenagers: How do you ladies feel about the issue of self-care? How do you remember to take care of yourself? How do you continue to put yourself first, so that you are not put on the back burner as a woman and a mother?
Angela Davey: I'm glad you asked that. The fact is, there are most likely a lot of women out there who have discovered they are HIV positive and pregnant simultaneously, or they'd already been diagnosed, but still had many cofactors that truly were obstacles to their addressing their life situation and diagnosis, much less a pregnancy on top of it. Whether those cofactors are chemical dependency, actively engaging in high-risk behavior, complete avoidance, mental health issues or, like me when Lilly was little, being pregnant and having a baby in an area where medical attention, much less HIV care, is minimal if not zero, we share the same fears. We've probably all lost sleep, had to dig deep within ourselves and reach out for the best support we could find. We've had great joy and uncertainty. It's how you deal with the uncertainty that can make a difference.
It is never too late, or too early, in motherhood to start caring for ourselves. We learn every day of our lives and continue to grow.
Rusti Miller-Hill: Well, I turned 50 in October.
Shana Cozad: Yay!
Rusti Miller-Hill: Thank you. And I realized that I have spent the better part of my life raising children. I became a mom at the age of 15; was diagnosed in 1991; had a son in 1995; lost children, too, through my addiction in the early part of the '90s. And one of the things that I've been working on for the last year is taking care of myself and really, really taking time out for me. I journal. I make sure I keep my medical appointments. I just graduated from college this year with my bachelor's degree, and I'm looking to continue and complete my master's. These are all things that I wanted to do as a young girl, growing up. So what I've done is ... I guess the men call it their "bucket list." I've just started to live and dream, and really look at the fact that it's been 20 years and I'm still here. If I'm going to die, I'm going to die, but I'm going to die doing what it is that makes me happy.
I've told my children and my husband that I am preparing for the second half of my life. For me, that means trying new things, trying new places, letting go of old baggage, not living in a world of woulda-coulda-shoulda.
I'm a grandmother now. My grandkids tease me: "You don't make cookies and stuff like that." No, I wait for you to bake them and then eat them! That's where I'm at. And, of course, letting them know they have my support.
Each day, I'm learning to let go of more. I'm stretching myself, and I'm taking chances. I'm saying yes to things that I might not have said yes to five years ago ... because of whatever. But in looking at taking care of me ... that's where I need to go. And I think for each person it's different. What works for me is not going to work for you. But as long as we've identified what it is that we want, or where we're trying to go, I think that's the beginning of that self-care. Because can't nobody love us the way that we love ourselves, you know?
As women, we come with our stuff. I know for me, as a black woman, growing up, I came with all the "-isms." All the good and the bad, all that stuff I grew up with that I still carry; then the stigma of HIV on top of that. And somewhere down deep, the real me was buried. In order to journey toward my self-care, I have to carve out who I am. I'm not the skinniest person; I'm not, the cutest person. But I had to become comfortable with me in order for me to make it beyond the diagnosis, beyond the stigma, beyond what the community said. In order for me to be here today, I had to learn how to be me and love who I am. I think that's the beginning of any self-care.
Jessica Mardis: For me, believing in myself again was really important, as well. I dropped out of school, and then tested positive at 19 and basically kind of gave up on myself. My life was over, blah, blah -- all the negatives you can think of: Been there, done that.
But waking up and learning that I was smarter than I gave myself credit for, getting my GED in 2007, beginning college in 2008 -- I have a year left on my bachelor's degree, then I plan to go for my master's.
Shana Cozad: Yay!
Rusti Miller-Hill: Congratulations.
Jessica Mardis: Thank you. You know, I honestly believed I was stupid. I had an awakening moment. Like I said earlier, Charles King, he changed my life. He believed in me. We sat and talked. And all of a sudden, I started believing in myself. Like, hey, you know what? Let me do this. I got awards and all types of honors, and just did things that I never believed I could do before, which helped me tremendously to believe in myself and to want to give that back.
Honestly, that's helped me a lot. I adhere to my medications. I take care of myself mentally, physically, emotionally -- I'm in a great relationship, which I think helps. Because a lot of times we sell ourselves short when we're positive. You meet somebody else who is positive, and they might not be the right fit for you, but you're thinking, "Well, this might be my only shot." I dated several guys before I found the one I'm with now. HIV changes us, but we have to find that strength within ourselves to not sell ourselves so short that we wind up with somebody we're not supposed to be with.
I'm fortunate that I did find people that believed in me -- even people who weren't in my area -- people who just saw something in me and said, "Hey, you can do this," and helped me step outside of that comfort zone. When I started college, I gave that my all. And moving over to a new area, it's like I'm starting over again, which is why I was so honored and intrigued about this conversation. Because it is my passion to help other people deal with what they're going through, because we're not alone. As I've heard you ladies talk, the whole conversation has just been enlightening for me, and helpful.
You can get back to that, "Oh, gosh, I feel alone." But we're not alone. There are millions of people going through what we're going through. A lot of women are doing this in silence. It's important for us to vocalize that, and to be there for one another, and to speak about what we've gone through. Because the same things that y'all are talking about you've gone through, I've gone through -- or I will go through. And that helps me.
Shana Cozad: It's helped me a lot, too. I've definitely been through my own moments of wondering, "Am I the only woman on the planet that tried to have children through this disease? Am I the only woman that's feeling this way?" It's a very difficult journey to have to make, but it is very refreshing to know that other women have either forged the path before me, or that there are other women who may hear or read this conversation and decide to embark upon this journey because of us. That's a powerful piece of responsibility.
It has been an amazing journey. And in hindsight, I definitely see where sometimes the blessings of the things that have been so hard have made my mothering ability perhaps 10 times stronger than it would have been had I not been living with this disease.
My son and I were just tied at the hip when he was little. Like Angela said, I had a moment of disclosure robbed from me. My diagnosis was disclosed to him at the age of 4, and he was told that I would be dead when he was 7. So the entire year that he was 7, he lived in fear. He climbed in my lap every day, and we cried, and we held each other, and we said how much we loved each other.
But when he turned 8, he realized that there was something different that was going to happen for us. His only wish when he turned 8 was that I would still be there when he was 8 and a half. And then we kept doing that, trying to survive another six months ...
Then, like Rusti said, you quit surviving at some point, and I said: "You know what, Shana? I'm not just surviving. I am going to thrive. I've got things that I want to do. There are places I want to go. There are people I want to meet. There's stuff I'm here to do. And it is more than just this disease."
Then my girls came along. My girls are now 11 and 9, and they've had a very alternate type of view with this disease. When my girls were in third and fourth grade, I was on the front page of the Tulsa World. At school, when they talked about "Take Your Child to Work Day," they took the article in to their classroom. They held up the article and they said, "This is our mom. This is what she does. She goes around the community and she talks and she speaks." Completely fearless.
I was really proud, and I was really hesitant. And I was somewhat fearful. We all know that there are still vast amounts of our community that need to change, but the only way to change is going to be through this next generation. If we instill the fear in them of that stigma, then we can pass that down. But if we instill in them that it is OK to talk about, then it is OK to talk about. It is OK for children to say, "My mother has HIV. We are an HIV family. But she is the only one that's infected." They need permission to have that freedom to say those words. If we don't give them that permission, the world will never change.
So it has been an amazing journey of hills, and of valleys. I turned 40, and I'm looking at turning 41 in a few weeks. Turning 40 for me was a defining moment. I've also been back in school, and I've been tackling things that I've always wanted to do. I've been doing some of those bucket list things. But I've really come to a place with myself of feeling I am so much more than just a woman with HIV. And I'm so much more than a mother. I'm going to blaze in the trail of just being me, Shana.
There's still a lot to behold as far as who I'm growing up to be.
This transcript has been edited for clarity.