This Positive Life: An Interview With Shana Cozad
March 17, 2011
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.
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.
Shana's husband, Bear, with daughters Danica and Mallory.
"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."
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.
Shana and her husband, Bear.
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.