This Positive Life: An Interview With Shana Cozad
March 17, 2011
In 1993, as a 21-year old new mom, Shana Cozad could not have been less worried about HIV. "It was commonly referred to as a drug user's disease. It was commonly associated as a gay disease," she remembers; "The stigmas and the discrimination and the unsupportiveness attitudes all around the globe around this disease were peaked at an all-time crisis high." Shana herself didn't do drugs, and she had not had many sexual experiences, but she was not a fan of condoms. "I remember getting an HIV test when I was 20, pregnant with my son, and thinking, 'I don't understand why you guys are doing this to me. ... It's those other people out there who are at risk. It's in those other communities.'" Shana, a full-blooded Native American, had been adopted at birth into a highly educated family; and because giving birth had had such a profound effect on her, she planned on becoming an obstetrician/gynecologist. She went to a university with many other young mothers in the student body, and thus unknowingly began her journey with HIV/AIDS.
In the first part of this in-depth interview, Shana shares each detail of learning she was HIV positive, and coming to terms with her diagnosis. In the second part, she recounts how she searched for and found the Native American family of her birth; how embracing her Native culture has helped her live better with HIV; and how she met her husband and gave birth to two more babies.
While I was at Highlands University in Las Vegas, New Mexico, I met another gentleman who was Native American -- and my son's father was also Native American, and I'm full-blooded Native American. In some ways, he had a lot of very opposite characteristics from my son's father. My son's father was 18 like I was when he and I met, and this gentleman was quite a bit older. He was there to receive his second master's degree. He had that "I'm the older adult and I will take care of you. I will show you the ropes. I will help pave the way for you." He promised the moon and the stars and all that good stuff. I didn't realize that I was that impressionable to an older man at the time. I just thought that I was very fortunate to have caught the attention of an older man who would accept me as well as the baby.
When we began to date, I believed at that time that my responsibility as a young woman was that I needed to ask certain questions about his sexual history. I just thought that that was how you are responsible. And I asked if he had ever had an STD [sexually transmitted disease]. I asked if he had ever had an HIV test. I asked if he had ever used drugs. I asked if there was any reason why we needed to use condoms because I was just not really comfortable with them. I was OK with the option of me just using birth control.
His answers were, "I don't have any STDs. I have tested for everything. I don't have anything. I have been married in the past, but I'm divorced. There's no reason why we would have to bring condoms into this relationship."
When the day came that I announced to him I didn't feel that we were really cut out for each other and that we should part ways, he said, "You can't leave. I have picked you. I have AIDS, so now so do you. I picked you because I needed someone to die with."
We were arguing about his drinking and we were arguing about laundry, all the little things that add up in your frustration level. This came so far out of left field, I just remember not reacting to that statement and just kind of thinking, "I'll bet people say a lot of mean things or horrible things when they break up, so this is probably his version of how you try to hurt someone in a breakup. But it probably has nothing to do with the truth."
The arguments and the day progressed negatively. Eventually, the sheriff had to be called because it became violent, and he was escorted off the property. Once he left, he left school or he left the state or something. But I never saw him after that.
Shana (bottom left) with the Humphreys, her adoptive family.
Several weeks later, a friend of mine, another single mother who I was learning a lot from -- she was helping me on lots of levels as far as how to take care of your home and time management and all of those things. We were discussing my breakup and I told her about the part when he said he had AIDS. And she quickly asked me if I had gone and gotten tested.
My response was, "Absolutely not. I think he just said that because he was trying to scare me. And besides, in my understanding, people who have AIDS, they look sick, they are sick; they are not going to university, they're somewhere dying and they're in wheelchairs and they're hooked up to IVs and they're hooked up to oxygen tanks and that certainly wasn't what he looked like." He was completely healthy looking. And he never got sick and never went to the doctor. And we lived together. Of course he wasn't "that way."
She kept urging the issue that I needed to get tested. She knew more information than I did. I needed to be educated. I really resisted her trying to associate me with people who got AIDS. Eventually, she won: She had bottom-line threatened, and said, "Look, if you don't go get an HIV test, we are not going to be friends anymore. This is serious. This is something that you need to do and you need to do it now." More, I think, to appease her than to actually try to educate myself, was how I ended up going to my on-campus student clinic and getting tested.
When I walked into the student clinic, it looked as if the entire clinic had been shut down for the afternoon. My nurse was there and a strange lady from the health department was standing off in the corner and just looked at me when I came in. My nurse was behaving very strangely.
Shana with her son, James, at age 5.
The first thing I thought was, "Oh gosh. I probably have Chlamydia or I'm four months pregnant and don't even know it." I didn't understand who the health department lady was. She wasn't really introduced. She just followed us and went into the room.
When we sat down in the room, my nurse burst into tears. She had a hard time composing herself. She said, "I have never done this before. You are the first person that I'm telling this news to. I have to tell you that all of your test results came back completely fine, except for your HIV test. HIV is something that, when it is tested, it is tested not just once, but it is tested three times until they are absolutely positively sure." This was 1993, so they were sure about their testing methods. She just didn't know what to say after that.
I remember looking at her thinking, "Lady, you're crazy." I tried to reassure her. I said, "No, no. I bet anything that at the laboratory the labels were switched on the blood samples accidentally, or something, and this is not my test result -- because look at me! I look healthy and I feel healthy. Go ahead and we'll try doing the test again. I'll come back in two weeks and I'll show you that everything is fine."
Over the next set of two weeks, I did find myself thinking, "What if this is really right? What if what he said during our breakup was actually correct?" I went back for my next set of test results and my nurse was there again. She said, "Your results are in and you are still positive." I had a very hard time with my second results, with really being willing to fully accept what she was saying. In my mind, I kept going back to some of the strangest things you might think: "But I grew up in such a good family. Look at me. I'm making really good grades. I'm a really good mom. I'm really smart." I had all these strange misconceived notions, again, of who I thought gets HIV and who doesn't.
Because I needed somehow to have more validation, I asked her to please draw my blood again and test me a third time. I told her if my third test comes back and I'm still positive on the third test, I will 100 percent completely believe.
She drew me a third time. I waited another two weeks. I came back for my third result, and that was when I fully had to face that I was 21 years old with a one-year-old son, having had only two relationships, having never been exposed to drugs, having never been promiscuous, and I was HIV positive.
My first feelings and my first thoughts were I was incredibly confused. I was incredibly enraged. I felt betrayed. I felt like my future possible life had been taken away from me. I felt hurt. I felt ashamed. I felt scared. When I really embraced my results, I cried for about the first six months. I just cried every day. I stomped. I slammed doors. I swore lots of words to the heavens above me. I journaled and I wrote. It was a wave of: grief, sadness, anger; grief, sadness, anger; grief, sadness, anger -- over and over and over again. Because I didn't feel like I had asked for this. I didn't feel like anyone had warned me about this. I didn't feel that I deserved this.
I went down to my local sheriff's office and then I went to the district attorney [DA] and I said, "I don't know how to tell you this, but there's this man out there. What if he finds another young woman? He can go and infect 100 women. I think you guys need to do something about this because if HIV leads to AIDS and AIDS leads to death, then isn't this somehow attempted murder?
They listened to the whole story. They said, "Well, did you know that you could have just told him that in order to believe his answers that you needed to go get tested together?" And I said, "No, I did not know that." And they said, "Well, today, modern-day relationships, in order to really know who your partner is, you have to really take some more steps. You can't just stop at having a conversation about who they are -- because there are some people who will tell you whatever you want to hear. And if you don't take it to another level and assert what is important to you and how clear you want these things to be and how defined you want them to be for you, then if you simply just sit back and let someone tell you sweet nothings, then you are beginning a relationship on your own assumptions."
It was incredibly upsetting. I felt like if I didn't know how young women could get HIV or what their risk factors were, then at least 75 percent of my college campus didn't know, because there were young women who were doing 10 times more things than what I was doing.
It goes even deeper because when I was diagnosed I was referred to an HIV clinic where I could be seen by an HIV specialist. On my very first appointment, the health department people showed up again. In having more discussions with them, we realized that my son, who was 1 year old, also needed to be tested. I had breastfed my son from the day he was born until he was 1 1/2. So from the time this second relationship started, when he was 3 months old, to the day I'm walking into the HIV clinic, I had nursed my son. For me, that's when the devastation really set in.
James, age 18.
It's one thing to hurt an adult in a relationship. It's one thing to hate someone or to hurt them or to commit a crime against an adult. But I cannot understand harming a child, harming a baby. Surely, I had thought he must have known if he was infecting me and I was nursing my son, he knew there was the possibility that I could infect my son. That level of rage and frustration required that I had to immediately get help, mentally and emotionally.
I jumped into counseling. I sought out support groups within the HIV community that were for women. I found a lot of other stories that were very, very similar to mine.
As far as trying to gather support from my family, there was really a closed door there. When I called my mom, she said, "Well, good luck with that and I hope everything will be OK but I don't know what to say about that." And we didn't speak for seven years.
I had called her the day I got my third test result. I said, "School's going great. My son's doing fine. I'm getting good grades and I have something to tell you. By the way, when that second relationship ended, it turned out that he had HIV and he infected me."
My mom tried to sound like she was sorry. She said, "Well, I'm very sorry that happened and that sounds like that's going to be a lot for you to have to deal with. And good luck with that." To this day, I haven't spoken to my dad in 20 years.
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