This Positive Life: An Interview With Shana Cozad
March 17, 2011
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. 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.
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