A Woman's Journey With HIV, In and Out of the Prison System
January 3, 2011
What year was that?
We had that conversation in 1989, but he died in 1991.
I just want to go back just a little bit. You were diagnosed in 1985. You got out of jail, and you kind of went in and out?
What was the year when you left jail and you never went back?
So this is only seven years ago.
So you've been in and out of prison for almost 20 years.
Yes. Life sentence on the installment plan.
And so in between going in and out -- this if fascinating to me -- how did you just manage? You didn't tell anybody you were positive?
Oh, for nine years, I kept it to myself. And then I went into recovery from prison and then I told my counselor. She started speaking to me about going to a support group. I was very reluctant. I didn't want other people in the house to know I was positive. But she told me I wasn't the only one in the house. I started going to the support group. And that support group saved my life. It gave me my life back.
What was it like?
This support group was run by a lady called Miss Elsie Cofield, in New Haven, Conn. -- it's now called AIDS Interfaith Network. This support group had the most loving and caring people that I had ever met.
I met other people that were positive, like me. They would go around and they'd tell: "Hi. My name is such-and-such. I've been living with this for so many years." And you know, just issues that I had; I was able to take them to that support group and they told me how to live.
They told me how to disclose. They told me that if you disclose to somebody and they turn their back on you, they were never your friend to begin with. And with boyfriends -- if they really cared for you, it wouldn't matter. Most importantly, they educated me and gave me so much hope that I finally got it in my mind that: I ain't gonna die. They said I was gonna die and it is nine years later, and I'm still here!
But even that didn't stop me doing drugs. I was getting hope from my support group, but I wasn't where I needed to be in order to recover from drugs.
How did you keep your body from breaking down? Did you have any opportunistic infections?
I've never been sick.
You've never been sick?
I've never had any symptoms that would take me to the doctor, and for the doctor to say, "Maybe we need to test you for HIV."
Even though you'd gotten the support and you were feeling better about yourself, you still weren't in recovery. What got you to the point that made you really commit to recovery and where you went, "I don't want to do drugs?"
I have tried over the years and there had been times in my life, like during my pregnancies with my kids, when I was clean. But I think my last incarceration did it. I had been incarcerated for a lot of years, but I had never been a person to stand down or let the time get to me. I did all the positive things to keep me educated and informed and to build myself up. The last time I went in 2000 -- from a case that stemmed from 1998 -- my sentence was seven-and-a-half after five, suspended after three. So after doing the three years, I was released, but then I violated my probation and I had to go back.
But when I went back in this time, and I started getting disciplined more, and I realized that the new set of the guards were off the chain. They really treated you like you were a dog. The prison system itself was one thing and now this. That's when I said, "I'm tired of this. I can't go back."
Also, while I was incarcerated, I grew spiritually. We had a wonderful reverend. And I started reading my Bible and getting connected, and spending time on a spiritual level. When I came out, I stayed connected.
Let me take a step back. Did you ever start taking medication? You know, when the cocktails came out, or when antiretrovirals came out in '96, were you on -- did you say, "OK, sign me up for treatment?"
No. For many, many years, they tried to get me into treatment, to take medication. Because I watched what the medicine did to my brother, I was adamant about not taking it.
So he was taking AZT.
Right. Well, I don't blame you for feeling that way. I don't blame you for feeling that way.
I mean, he died with dementia, wearing a diaper and, you know, so many things going wrong with him. And just being there, taking care of him, I was in the mindset that they were using people as guinea pigs to test the medicine -- they really didn't know if it would work or not. And then when the cocktails came out, I said, "OK, more guinea pig-ism." But then in 1998, when I got the diagnosis of AIDS, it sort of really hit that maybe now I was finally going to die. And if I lived all this time without the medicine, maybe if I take it, I'll live longer.
So had you ever had a CD4 count done?
Oh, many times. It was always in the 500s.
So you were relatively OK.
So you thought, "Hey; I'm doing well." Until they told your disease had progressed to AIDS.
I think what caused my CD4s to drop to 98 was because I was extremely out there, doing drugs. I wasn't taking care of myself at all. And then the stress of being arrested, you know, again and again. It played a part in my immune system coming down.
The doctors were concerned and they talked to me. They told me, "Well, you know with 98 T cells, you can get this; you can get that. And being here in the prison, where you are really open to a lot of things, we really can't protect you." And so I said, "I want to live for my grandkids." I had missed the opportunity with my own kids. So, maybe for my grandkids I'll be there a little longer.