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.
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.
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."
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.
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.
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.
Did your mother tell your father? Or did you have the opportunity to tell him yourself?
I did not have the opportunity to tell him. She told him. She also told me that my sister was coming up on her graduation at the end of the school year. This was April and in May I was required to come out for my sister's graduation. My mom said, "When you come out and we're going to be at your sister's graduation, I don't want you to talk about this. I don't want you to mention it. I don't want you to ruin your sister's day."
Where did you go for support? What about the friend who had encouraged you to get tested? Was she someone you told after you found out you were positive?
Yes, I told her. I told a couple of other girlfriends who were also young mothers, who lived in the same family housing unit that I did. I found that I was telling a lot of people. I guess I was in shock. I just didn't know where to go with this. I felt better the more that I was talking about it.
The entire HIV community -- be it doctors, nurses case managers and other clients -- was very embracing and loving. I found just a ton of support in that community.
My friends at school and I didn't know a lot of the basics. So I didn't know if I could use their bathroom. I didn't know if I had to eat off paper plates. I didn't know what to do if I had a cut. I had questions: "What do I do when I have my monthly cycle as a woman?" I was scared by even the sight of my own blood.
Lots of people were very helpful, very willing to tell me that if I coughed and sneezed on someone, I didn't have to be afraid. I wasn't going to infect. I didn't have to live under quarantine conditions.
Where were you getting this information?
From the AIDS service organizations, from my case managers, from my doctors, from my nurses.
Within the first appointments with my HIV clinic, it was explained to me that a normal healthy immune system has between 700 or 800 T cells to a top range of about 1,200 or 1,300 T cells. They said, "Typically, for newly diagnosed people, we'll begin to watch the process and it can take up to 10 years before someone's immune system drops to 200, or below 200; then they have what's called an AIDS diagnosis.
"Your first T cell test shows that you have 189 T cells. This is pretty amazing. This is not typical. We don't see a lot of people who are newly diagnosed and have what are called these aggressive strains of the virus that just wipe out the immune system very quickly. We're kind of required to inform you that along with getting an AIDS diagnosis, you have approximately two to five years to live on average. We recommend that you make arrangements for your burial and for who will raise your son."
I was not prepared to hear that I had a death sentence. I could tell my friends that I had HIV, but I couldn't say that I had AIDS. I just wouldn't allow myself to say "AIDS." I just couldn't. I felt like if I said it out loud I was going to fall over dead instantly.
It probably took about six months for me to learn how to say the word "AIDS" out loud. This sadness, grief and anger, sadness, grief and anger really, really sunk me very, very low. I didn't understand anymore why I should try to go another eight years in school if I wasn't even going to be alive in the next five. So I dropped out of school.
It was a combination of things that forced me to get out of that cycle of sadness, grief and anger. One, when I dropped out of college, I felt like I was abandoning the greater populace of young women who were attending college and had no idea this could happen to them. I felt somehow like I had a responsibility to other young women to say something about this.
The second piece was one of the other things my doctor had said was that he had come across some cases where some people had absolutely no immune system and they were living -- they didn't understand how -- but they were living great. And then there were other people who they had seen, who were given a diagnosis of just the HIV part, had a decent immune system, but because they were given this as a diagnosis, their depression and their inability to cope with it resulted in their giving in and being dead six months later. So every day that I got up, I had to get my son dressed, take care of him, feed him, provide for his needs.
I had this precious life that was this baby that had been given to me. He was somehow spared. To this day, I don't really know how because, when you think of the process of how often a mother has to nurse their child, and the fact that this aggressive virus strain that I had, which had already deteriorated my immune system so amazingly quickly in just one year's time, it's probably sheer miracle that he was not infected. I felt that if this was that one opportunity that was given as an incentive, I was going to use it and I was going to take it and I was going to run with it.
So what I told my doctor is, "I know you're obligated to tell me that most cases are of people who are dead in two to five years and that's how you help to prepare people. But I'm telling you right now that's not going to be me.
So what I told my doctor is, "I know you're obligated to tell me that most cases are of people who are dead in two to five years and that's how you help to prepare people. But I'm telling you right now that's not going to be me. I'm going to be one of those people that may have no immune system -- I may have nothing -- but I will still be alive. I got this boy to raise. I'm committed to him. I'm going to see him become 18."
Did you start doing HIV/AIDS work right away? What was your entrée into this work? Are you still working in the community now?
When I first entered the HIV community, there was already an established speaker's bureau. There was this partnership between the health department and the Department of Education that funneled moneys together; and even though school districts were only funded by the federal government to try to push an abstinence-based program, the Department of Education really took an aggressive stance -- they wanted students from elementary school to high school to have the ability to be properly educated. There was a well-formed speaker's bureau that would go into schools -- colleges, universities, wherever we were asked to go to. I knew that there were other women and other men in the HIV community who were part of this big speaker's bureau thing, and they talked very highly about it. They were very encouraged by it.
For about the first year, a lot of my presentations, I cried. It takes a lot of courage, but I knew that these other women and men in the community were stepping forward and having the courage to do this. This was a way of offering education that people could really listen to. With videos and books, the literature and the pamphlets, people just didn't take anything home on a level that they really understood what their risk levels were, what their risk factors were. They didn't address the myths and truths very well, whereas when you have the opportunity to speak to a person, you can.
Kids would ask me all the time, "Do you think you're going to die? Can you feel yourself dying?" I was never offended by what they wanted to ask even though I knew this was an openness that I had never really shared before. There was a realness. This wasn't just "Hi, how are you doing" conversation. This was "Let's get down to the nitty gritty and talk about what's really important in life." So it was a very beautiful process.
Every single one of those presentations from day one up into even just this week, when I was speaking down in Lawton, Oklahoma, I have had nothing but positive feedback. I've had standing ovations. I've had people who have come up after I share my personal experience and they have cried in my arms. We have cried together. I have had people hold me and pray for me. I've had people just say, "Wow, you really taught me something today. I'm never going to forget you."
And for me, with that sense of responsibility that I had left all those other young women at university not knowing anything, I now felt like I had an avenue to channel the frustration, the rage and the anger that I had about my being infected by this man. I could now do something about it. I could turn it from a horrific, awful tragedy that's all about me into something good, and make it all about these young people.
Finding Family, Finding Love
Tell me a little bit about your background.
I was adopted at birth. My biological mother was 19 when she had me and at that time in Oklahoma, many young Native America women were -- I don't want to say harassed -- but they were put on public display, not in their Indian communities but in their rural communities, so that they were accessed by Baptist ministries. They were given lectures that, if they were not educated, married and living in a house with a white picket fence, they had no business having children. Many Native American women in the early 1970s were forced into being sterilized and were not given the option of ever being able to have children. There were some very bad things happening to women, especially Indian women, at that time.
My biological mother was young and impressionable and didn't know what to do and was offered the possibility that adoption would be a better way for me, a better way for her and a better way for the community. So she put me up for adoption. It was one of the most painful things that she has ever had to do in her entire life.
I'm one of those people that can say I've always felt a bond between me and my biological mother; and it doesn't matter how far away I journey or how long it has been that we haven't spoken or seen each other, I feel the bond between me and my mother.
I did not meet her until I was 23. I searched for her from the time I was 18. I'd known I had another mother since I was 4, because I did not look like my brother and sister who were in the family where I was being raised. The family who adopted me was an Anglo family and we grew up in Oklahoma City until I was 12. My family came from the school of thought that adopting babies is very noble, it's very good, it's the right thing to do; it shows what good caring people they are. However, I didn't know anything about Indian culture and I was never taken around powwows. I never saw another Native American face until I was 18.
When I reached 18, I saw profound differences between who I was and who my parents were. As much as I wanted to please my parents and make them like me more, make them like me as much as I felt they liked their own children, I really felt that I was going to find more answers about who I was if I found my culture, and if I found my birth family. I had this sense that, the entire 18 years that I grew up with my Anglo family, my biological mother was very, very sad without me and that she was waiting for me to return. So when I was 18, I sent off to my tribe for my head rights and I was sent a check for $5,000 -- which is what is equivalent for Native Americans having given up this entire country, our land and our freedom. I took the money and I decided I was going to go on a journey.
When I would walk into the Native community and say, "I'm adopted. I don't know where I come from and I'm looking for my mother," there was this outpouring. It was really quite beautiful, and that's what leads up to how I met my son's father. He was Native American and I had met his mother. Although she's not Native American, she was married to a Native American gentleman, so she knew a lot about Native culture and she answered a lot of questions for me and helped me understand things.
Even though I looked Native, I knew nothing about these traditions. I wanted to know everything about where I came from. And I was impatient. I felt awkward going up to Kiowas and saying, "What is that symbol about and why do you wear these colors? Why do the men's moccasins look like that but women's moccasins look like this?" I felt I was very out of place.
People were very, very helpful; but the bottom line was that there was no way to get through the records to get my birth certificate opened. It had been formally sealed, so it was really just going to be this process of trying to get to know as many people as I could until we could figure out the right way to find my mother. So when I had eventually met my first boyfriend's mother, her perspective was, "This is something that you have to pray about." The family I had grown up in was atheist, so I knew nothing about prayer. I had no formal relationship with ceremony.
She brought me into Native American ceremonial ways, Native American church, Native American sweat lodge ways. She said, "You may not know your mother, but you can start by knowing and being introduced to your ways. This is where you come from. This is what your people do. This is what, undoubtedly, your family is still doing today. It just might not happen in the way of filing the documents and doing the paperwork trail, but it might happen this way, through prayer." So I was taught how to pray. I was taught my Native culture through her introduction.
Eventually, through the breakup with the dad and being diagnosed with AIDS and the speaking and all that, what's really ironic is one day I showed up at Santa Fe Indian High School to do a presentation to their 7th grade class. I was invited especially because I was a Native American speaker with AIDS, so it was appropriate for their audiences. When the teacher said, "Oh, you're Shana Humphrey. What tribe does Humphrey come from?" Native Americans are regionally named according to their tribes. I said, "Well, I'm Kiowa, but Humphrey is my adoptive last name. I don't know what my original last name would have been."
She said, "Hold on. There are ways we have -- behind closed doors -- but this is what we do. I'm going to call this person that I know at the enrollment department within the Kiowa tribe, and I'm going to tell her that I met you. Give me your date of birth. Give me where you were born. Give me the time of your birth and we'll track everything from there. I'll have her look through every record that she can find and we'll figure out who your mother is."
Within two weeks, I had a letter from the enrollment department that said, "Your mother is Carol Cozad. You were indeed born at Grady Memorial Hospital on August 11, 1971. Your records were officially sealed in Oklahoma City; however, in our department they are not sealed and we can tell you this. Here is her address." And they sent my mother, my biological mother, the same letter: "Your daughter is looking for you. Here is her name. Here is where she was born and this is her current address."
Was she excited to hear from you right away, or was there some apprehension?
She was. She was very excited to hear from me. Within about three days, I got my first letter from her. She addressed me as her baby girl. It was the fall when we exchanged information; and I went out and saw her the following spring, when I was 24.
When we saw each other, it was like we recognized each other. I'd never carried an ounce of anger. I never carried resentment towards her. I knew that she had to do what she did. I knew that that was her situation. There was only room for happiness in our rejoining and reconnecting. So at a time when my white family had abandoned me, here was this open door and there was my biological family that I could return to.
Did you tell your birth family right away that you were HIV positive?
I didn't want my mother to feel like I had been separated from her for 24 years of our lives and she was going to lose me again. So I did not tell her right away. I held onto that information because I really thought, if I came from a super-educated family, the chances of her knowing anything about AIDS in rural southern Oklahoma was zilch.
I was there in New Mexico and my primary resource outside of the HIV community was my son's grandmother, basically my ex-boyfriend's mother. She had a beautiful piece of property and she said, "You can live here. Let's focus on raising this boy and helping you to be well." So there were ceremonies there. There were ceremonies in Oklahoma. There was this extended relationship of people who had been helping me from the age of 18, praying and praying and praying and praying to help me find her. And now that I had found her, the same people were praying and praying and praying to help me to be well and to help me deal and live with AIDS, so that I could be alive. It's been a really incredible life.
What I've learned in the Native culture I've been exposed to is truly one of the saving graces in how I deal with HIV.
Bottom line: What I've learned in the Native culture I've been exposed to is truly one of the saving graces in how I deal with HIV. I was really blessed by the Native ceremonies and the traditional ways and the elders that I got to know later. I was told things in those ceremonies by those elders, specifically about AIDS. They had such an amazing perspective about this disease. I didn't know that an 80-year-old man up in Ethete, Wyoming, would have any idea or any clue about what AIDS was.
In what's called Rabbit Lodge, which is the four days of lodge that occur before Sun Dance -- and this is the Sun Dance ways that belonged to the Northern Arapaho -- this man had heard that I was there, and they invited me in because around these ceremonies, they heal the sick or they pray for the sick. They take care of the elders. They love the children. The men sacrifice and dance and commit to that tradition because it's all for the betterment of their families and their entire tribe.
Ceremonial ways are not just for each person. It's about the entire community. So when someone comes into the community and says, "I'm sick with this," "I'm sick with that," or whatever, it's brought to a focal point. I was brought into Rabbit Lodge. It was a teepee that was set up and everyone is dressed up in their appropriate attire. You have to step over certain red cedars that are burning. You have to make offerings to be able to present your situation. You have to be completely willing to be open to hear what they're going to say.
I was there and I followed all the instructions. The elders knew I had something to share. What I said was I was 24 years old and I had an AIDS diagnosis and I had this almost-3-year-old little boy and I had been told I was going to be dead but I really didn't want that. I needed help.
What these elders said: They were really quiet for a long time and they looked like they were just thinking. They finally spoke up and they said, "We've heard about this disease that you have." They never said the word "AIDS." But they said, "We've heard about this and we have known this was coming. The way we understand it is that you're going to be OK. How we look at this is that, the way that we human beings are, we have collectively been abusing this planet, this mother Earth that we walk on. All of us walk on this planet. All of us take our steps, whether they're shoes on or shoes off. We take steps on this planet. This is where we live. This is our home.
"What we have done here in these modern-day times is that we have abused her. We have raped and pillaged her. We have weakened what is supposed to be her immune system and so when we do that, because we as humans are not very smart, what happens is our mother is going to give us a mirror to be able to look at ourselves. The mirror she gave is this small microscopic life form that has the ability to take our life away. And what that does is it helps us truly feel, to truly understand what we have done to our mother Earth. If we work together, if we use our intelligence the way it was given to us, if we honor where we live and all of the steps that we're taking on this mother Earth, then we won't have these diseases that hurt our bodies and take away our immune systems.
"This is the big picture for all the human beings around the planet -- because this is something that only happens to us. It doesn't happen to the Buffalo. It doesn't happen to our pet dogs at home. HIV happens to us people, us humans. So this is our opportunity to learn something and to listen to what's being said."
He said, "I can just tell you you're going to be all right. I want you to really know. I want you to begin to think about seeing yourself off in the future and I want you to see yourself as being alive, being vibrant, being healthy and I want you to hold onto that. And the rest will take care of itself."
For Native cultures, for those elders, the reason they've interpreted for this disease being here was quite beautiful. ... If this is something that's here as an opportunity to learn from, then of course we should speak about it.
They prayed and they said what they were going to say. And that was what I took away from the ceremonial ways. For Native cultures, for those elders, the reason they've interpreted for this disease being here was quite beautiful. It was profound. If this is something that's here as an opportunity to learn from, then of course we should speak about it.
Are you involved with the Native American community now? Are you still in touch with your birth family? Has this continued to be a source of support strength in your life?
Yes, I'm still involved with Native traditions and Native ceremonial ways. For me, that has been part of my life-saving and coping methods. It's helped me cope emotionally. It has helped me have that understanding that helps me wrap my mind around this disease. It has helped mecommunicate to this disease. That is always going to be a part of me. That really was the finite moment where I went from just surviving as a person with AIDS to turning it around and becoming a person that was living with AIDS.
I'm still in communication with my birth family. At this point, my mother knows. She's still not very educated about what AIDS is. I've tried educating her. It's really kind of funny: She almost just doesn't want to know too much about it. She says, "I'll love you no matter what you have. I know that you're tough and you come from a tough line of people, especially a tough line of women. And you are going to be OK," is what she has said.
How did you meet your husband?
I'd had lots of opportunities to have sexual relationships, but in the beginning I was just not into it and I was quite intimidated. I was worried about condoms breaking. It's awkward. How do you get used to that barrier between you and another person? How do you get comfortable with that? How do you get used to the smell? Who's going to put it on? [Laughs.] There was just so much there that was an unfamiliar element for me. But eventually, I ended up having a boyfriend now and then, and learning how to have those conversations. I've never been in bed with someone who's been intimidated by me.
Eventually, I was in a community where a friend of mine knew this other guy who knew another friend who was single. Our friends were saying, "You two should meet!" We were both Kiowa and both in New Mexico. Our tribes are from Oklahoma, and so for two Kiowas to be in New Mexico, it's kind of strange. It's like having two Navajos living in New York. It's not their territory but if there are two Navajos living in New York, they need to meet. They need to find each other.
So we met and by our third interaction, he was very attracted and wanted to know if I was interested in a relationship. I said, "Well it isn't just the 'me' package, the mom package with the kid. You need to know everything that I do and what my work is really about. I do the work that I do because of who I am. You need to know that I'm a person living with AIDS, and I can be in a relationship but I can't promise you that our relationship is going to last. I can do my best but I don't want you to have any assumptions that we're going to go live off for 50 years, that everything's just going to be hunky dory."
This was happening at a time that I was having pneumonia about twice a year. I had surgeries and had had an appendectomy. I was getting body rashes. I had had my hair fall out. I had had lots and lots of problems, with my digestive system just completely flat-out failing on me. I had opportunistic infections. The list of stuff in my body that was actually falling apart was quite long at that point. So I was telling him, "I don't really know if you really want to choose this because I'm in the hospital about three or four times a year and it's usually not pretty. It's not any fun when my doctor comes in and goes, 'Geez, I don't know if she's going to make it this time.' So I'm letting you know that this is heavy duty and this is what's going on in my life. I don't know too many who would want to choose this."
He basically just said, "I really like you. And I think you're amazing. And I don't care if we have five months together or five years, I just want to be with you. I'll take whatever I can get. I understand that there are parts about this that are not pretty and it's not all glamorous public speaking and all that. Behind the scenes there's a lot of work. I appreciate that. I like you for who you are. So I don't know whatever else there should be in a relationship but it's not about the status. It's not about if you have a college degree. It's not about what family you come from. I just like you for who you are." So that was it. I was sold. [Laughs.]
What year did you get married?
We were married in 1999. I was 29 years old. I was pretty much just on cloud nine. My husband is a lawyer and is in the casino industry, helps the casinos and the tribes and the federal government get along and function the way that they need to function.
Within a year of our being married, we actually had a busted condom occur. By that time, the HIV meds had just come out. I was on my fifth combination of medication, so I had just obtained my first undetectable viral load. My virus had been undetectable for maybe about four or five months. And so I was pregnant. I had to tell my HIV specialist that I was pregnant.
The medication that I was taking to suppress my HIV had actually never been tested on pregnant women. So my daughter Danica, in the medical community, is known as the "Kaletra baby" because she was the first baby in the world to ever be born and have it proven that Kaletra [lopinavir/ritonavir] was safe for pregnancy.
What happened after my pregnancy with her, and everyone seeing she was born with all 10 fingers and all 10 toes and she didn't have two heads, is that then they were able to recommend worldwide that for other HIV-positive women, if they wanted to become pregnant, that this was a medication that would be safe.
It was an amazing piece of HIV history to be formally a part of.
Is your daughter HIV negative?
She is HIV negative. My husband is HIV negative. He's been tested regularly.
The pregnancy was amazing. I knew within two weeks of being pregnant that I was carrying a girl. And I knew that she was going to be a powerhouse. When you see a mom that's glowing when she's pregnant, that's what happened to me. I was completely just glowing when I was pregnant with her. It was all her. It wasn't just me being good at being pregnant. It was her. It was the energy of her. And that's exactly how she is today. She's a formidable little girl. She's an amazing force to be reckoned with. She knows exactly what she wants. She knows what she wants to do and what to be. She has her life set and planned out. [Laughs.] She's a little Aries.
The pregnancy went well, and the birth process; I was allowed to have her naturally. I did not have to have a Cesarean section. Right after her birth, she was given six weeks of liquid-dispensed prophylactic HIV medications, which also helped reduced her risks. She was not breastfed. She was formula-fed, so that was not a risk for her.
As long as labor is fast and as long as it's not intense, fast labors are completely safe and completely fine and OK. It's when labors go on, when they're long and the mother is strained and the baby is strained, that's when risk factors are increased as far as mother-to-child transmission.
How long was your labor?
You have your oldest child, your son, and you have your daughter Danica. Do you have any other children?
Yes. Danica was born in April of 2001; and then, because my sister and I had such an incredible relationship with my sister growing up, and loved having a sister, I wanted Danica to have a sister. So we figured out that, when you engage in sex and then you have a condom filled with sperm, it doesn't take rocket science to figure out once he's done and taken the condom off, you simply reverse it inside out and you can inseminate yourself and voila, you are a pregnant woman again. He has not been exposed and you have succeeded in the process of gathering the necessary components. [Laughs.] And so in December of 2002, we had Mallory. She is also HIV negative.
So the same doctor who said, "I have to tell you you're going to be dead in five years" was the doctor who was in tears and filled with joy when I walked into the clinic for my quarterly checkup with my second baby.
One of the other unique things is that when a women's body is pregnant and carrying that life, her immune system surges. All of her systems surge. You grow more hair and nails. Just everything is kicked up a notch. When I was first pregnant, I had about 100 to 125 T cells. My T-cell count had dropped from the time I was first diagnosed, from 189, and at one point it had dropped all the way as low as 11. I literally had zero percent of an immune system. When medications came along, I was able to get up to about 100 to 125, but never more than that. But when I got pregnant, they went up to 500. So I credit being able to get my immune system back to Danica. She gave me my immune system back.
I don't know if her body trained my body. I don't know if it's just the process of what happens to a woman's body, that all of a sudden your body has to remember how to have an immune system, I don't know. But now I'm anywhere between the high 400s to the low 600s.
Amazing. Is your viral load undetectable now?
My viral load has been undetectable for 10 years.
Are you taking HIV meds now?
Yes, I take Kaletra, Viramune [nevirapine] and Viread [tenofovir].
I also take Singulair [montelukast], Zyrtec [cetirizine], Claritin [loratadine], Paxil [paroxetine] and Prozac [fluoxetine]. So three HIV medications, three allergy medications and two antidepressants.
Do you have private insurance?
Nope, I was deemed disabled in 1997, which was following a whole series of pneumonias and the surgery and all the opportunistic infections. That's what really led my doctor to say, "OK, that's it. I know you're fighting the fight and your heart is in it. You're doing well. You feel great. However, your body's falling apart left and right. So we're making the formal recommendation for you to have disability. You will get social security and you will get Medicare. That will cover you for hospitals, doctors and 100 percent of your medications."
I have gotten off disability and gone to work three times over the years. I'm now in the process of my fourth time getting off disability and going to work.
What are you going to be doing?
Well, it's going to be dependent upon how much work I can establish for myself. Currently, I'm working for a day spa. One of the things that I had done before I left California was I went through a massage school and got my training in Esalen-style massage, which is very similar to Swedish. I've used it off and on over the years, but it was never something I had specifically set out as a career. It was just always sort of something I would fall back on, if needed. And it's not at all the type of little back-alley-with-a-happy-ending type of massage. It's professional, therapeutic, stress-relieving massage.
I've worked for health departments and I've had prevention educator jobs. I've done lots and lots of work in the HIV community. In this state, the last job that I had was working for the health department. I was actually quite quickly burnt out because HIV education here in this state is about 20 years behind.
What sorts of things you do to keep healthy, besides staying adherent to your meds and engaging with Native American culture and rituals?
Because I know I have such an aggressive virus and I know that I have to adhere to my medications, I've also learned that what works for me and my body in order to truly feel a sense of health is I eat organic. I utilize a lot of body work, as much as I can schedule -- massage, Reiki, Trager work. I love Chinese acupuncture. There are some Chinese medicines that are also very good. I also do chiropractic care and make sure my spine is in good alignment so that nerve endings to my organs are not cut off. I do reflexology.
I still go to my women's groups and I'm still an active part of my HIV community. Those are my people. So the AIDS walks, World AIDS Days, all the community-level organizations that are grassroots are things that are very helpful for me.
This is something that was profound that happened to me. I'm not going to sit quietly at home and just not do anything about it. We know that there does not have to be another single person to be infected because of lack of education or lack of resources.
I wish I could say I exercise as much as I'd like to. I've had times in my years that I've gone to the gym and I was there three day s a week for hours on end. But at this point, exercise is not very high on my list. When you've got three kids and two crazy dogs and you're trying to go to work and I'm also now a full-time student -- I've gone back to try and finish my degree -- there's just not a whole lot of time to figure out how to get to the gym. And I'm usually chasing around after my kids anyway.
How do you think having HIV has changed you?
It has changed every part of my being. HIV has changed my understanding of being a woman. It has changed my understanding of being a partner in a relationship. It has changed how I parent, how I'm a mother to my children. It's changed how I see my social responsibility to the community, to the world at large.
This is something that was profound that happened to me. I'm not going to sit quietly at home and just not do anything about it. We know that there does not have to be another single person to be infected because of lack of education or lack of resources. So the more that people have access to the education and the more that they know where to go for testing and the more that they are exposed to what HIV/AIDS looks like and know what it's like to live with this, if that helps communities, then I'm doing my job. This has impacted me spiritually at my core because I've had to address, between me and creator, my need and my desire to live. There isn't an area of my life that I can say it hasn't touched. It's incorporated in every part of my being.
Shana, thank you so much for taking the time to share your story.