Tell us a little about your life.
I live with a partner and two poodles, one toy and one miniature. They're sitting here staring at me now.
What's the community where you live like?
I live in a brownstone in a nice residential area in Brooklyn, though it is a very high-risk area in terms of crime, drugs and HIV/AIDS.
Where did you grow up?
Hempstead, Long Island.
What did you want to be when you were a kid?
A social worker.
What kinds of work have you done?
Accounting, for many years. In the middle of going to college for social work, I changed my major because I became fascinated with the stock market. But then I eventually went back into social work. Now, I am a pre- and post-HIV-test counselor.
What work did your parents do?
My father was an engineer and my mother was a registered nurse.
Who are the most influential people in your life, both professionally and personally?
The woman who was my director at work for many years, Jill Williams, had a profound impact on me. She actually aided me in rebuilding my life. The other person is my partner. She is very, very supportive of me. She is HIV negative, and she lets me know that I'm not HIV -- and although HIV lives in me, it doesn't dominate my life.
Do you participate in an AIDS service organization?
I was the chair of the consumer advocacy group, and I sat on a lot of the different committees. But since I've been in Brooklyn, I'm not involved in any agency. I do participate on committees through my job.
Have these organizations been helpful to you in improving your life and health?
I guess to some degree. But I don't fit a lot of criteria. I thought that when I moved to Brooklyn that I might be able to access HASA [HIV/AIDS Services Administration], and that's just not happening. It's an incredible program. Once you get on HASA, in less than 30 days you're in your own apartment. Beyond that, they buy your furniture -- I mean, they be hookin' you up!
Do you consider yourself an AIDS activist?
What does activism mean to you?
Fighting for what's right. Fighting for what I believe. I do a lot now that's not so public. I do it mostly through the Internet. I'm involved with a lot of different organizations. I write to the senators and legislators. They're getting ready to have a big bus ride up to Albany that I would like to take part in, but unfortunately I have to work. I do what I can from behind the scenes. I'm not out on the forefront like I used to be.
What do you like to do in your spare time?
I love to read and I love to write.
Are you a religious or spiritual person? Do you attend a church?
Absolutely. We belong to a church called Unity, in Brooklyn. It is an awesome church.
How did you find out you were HIV positive?
I had gone to social services because I was in need of financial assistance, and all the people I was hanging out with were over there. I was like, "What are you all doing here?" They told me that there was a scam going on that if you were HIV positive, social services didn't know what to do with you, so they were giving everyone $500 a week to stay at a hotel. But nobody was staying at the hotel. So they were getting like $2,000 a month, in addition to food stamps and whatever.
One girl had enough sense to stop getting high. She purchased a stamp (printed with the hotel's name and address), and she sold that stamp every week. You had to give her like $10 or $20 to stamp up receipts to take to social services. It was incredible, the amount of money -- every day $70 and $80.
Nobody was out there hustling or doing crimes because welfare was supporting their habits. It was incredible. So that's what prompted me to go get tested.
How did you feel when you tested positive? How have your feelings changed over time?
At first it was horrible, just horrible. When I went to get tested, and it was an African American -- he asked me what kind of test was I getting. At the time, nobody talked about "HIV" -- there was only "AIDS," and you died shortly after diagnosis. I told him I was there to get an AIDS test. And he was like, "I don't want to do this." And I said, "I have to get this done." So I actually drew my own blood. I certainly never had the courtesy of getting pre- or post-test counseled.
The doctor called me -- it was one of those free clinics in Hempstead -- and said my results were in. When I went in, he closed the door and said, "You have AIDS."
Then he said, "Next patient?" And I went to say, "Well, tell me something -- give me some hope. Let me take medication. What's going on?" And he was like, "Next patient."
So I went on a full-fledged suicidal mission. Really bad. I got arrested six months later. And once I withdrew from drugs, I started wanting to get my life together. I realized that I had this virus, and I didn't want to die like that. And that was what really made me want to get clean, because I didn't want to die and be buried in Potter's Field without a tombstone. My theory has always been that I wanted to make my mark in this world, and I had to get myself together in order to do that.
So that's when I started educating myself about HIV. They didn't give you literature or anything like that in jail, so whatever pamphlets I got a hold of, I would write to the people on the back of the pamphlets and they would write me back. That's how I got my information.
How long do you think it takes to process a diagnosis?
It definitely depends upon the individual, but in today's time, with all the publicity and encouragement, I think there's like a six-month period of denial, and you slowly start pulling yourself away from it.
But it's been my experience through my work that people aren't even getting the privilege of being HIV [positive] -- they're being diagnosed with AIDS because they're taking so long to go get tested. Most of the clients I've met who are newly diagnosed already have resistance to medication upon their diagnosis. So that's sad.
What advice would you give someone who has just found out they are positive?
To fight for their life. Because they're worth it. It's not the end -- it really isn't.
What conditions in your life put you at risk for getting infected?
Intravenous drug use -- sharing needles. I remember so clearly: A very good friend that I had gone to school with was very sick. Nobody wanted to hang out with him because he really looked bad. He was in his last stages. I took it upon myself to pick him up every day, and I hung out with him, and I hugged him and kissed him, and just let him know that I loved him.
We got high one day, and he didn't tell me he had put his needle in my glove compartment. So after I dropped him off, I was looking in my car and saw the needle, and I went, "Great," and used it. And I remember looking at it and seeing the blood at the tip of it. After I got high, I started looking for a cigarette or something, and I reached in my pocket, and I found my needle. I called him and said, "Reese, did you leave your set in my car?" He was like, "Oh God, Pam, I'm sorry -- I forgot about it. Just hold it for me until tomorrow." I didn't tell him I used it.
What is the first thing someone who has just found out they have HIV should do?
Take a deep breath. Then they should get connected right away. Get involved with primary care, and from that it's endless, because everybody wants to grab a hold of a newly diagnosed person. Initially people care, but it becomes a numbers game.
Every agency has to have a certain percentage of consumers, a certain percentage of providers, and if you're not at that level, it could lead to problems with funding. So when they see someone that's very strong and doesn't mind sharing their status openly, they grab them up, and I'm telling you -- it's been endless. And this is why I'm working now in Brooklyn.
Part of the reason was because I had to be closer to my partner, but the other reason was it just became too overwhelming to me. Every time I turned around, I had to turn down speaking engagements. It was just incredible.
When you look back, what would you have needed in order not to get infected?
More harm reduction. You know, out here in Brooklyn there's needle exchange, and people aren't afraid to hand out bleach kits -- but that wasn't available. And just recently I was working on the first project of this kind on Long Island. We had to rely on people that came to the five boroughs to bring us back these kits.
They talk about the transmission through sharing needles -- it's also the cooker, the cotton.
You always see a heroin user with a newspaper. They're always trying to educate themselves. Someone who's using crack -- they can't stay still. They're always paranoid, moving around. Most heroin users, after a while of using it, get on a methadone program. That's not the case with crack. So I think if education and harm reduction was available.
How has HIV changed you?
It's made me appreciate life. We all don't know the day or the hour. One of my jokes has always been that HIV is never going to take me out. I'll probably get hit by a bus or something. It's really made me stop to smell the flowers.
The only way I can see HIV now -- because my ultimate goal is to see the virus under the scope, I want to see inside my blood -- is what it does to people.
When did you first realize that you were African American?
I must have been around six, and my best friend in the whole world was Polish. And we were literally paid not to play together. We were always ostracized. We didn't even understand the difference between the colors, we just liked each other and we wanted to be best friends. It was incredible. She took more of a stand than I did. It was very sad, but it only drew us closer. So I speak a little Polish.
To what extent have you experienced racism in your life? How have you learned to deal with it?
With my best friend, it had a profound effect on me. I remember us crying because we didn't understand why they didn't want us to play together. We said, "Well, we're gonna make a pact. For the rest of our lives, we're going to be blood sisters." When the blood came out, her blood was the same color as mine. You know what I'm saying?
What is the biggest challenge facing African Americans today in terms of HIV?
You know, when they start talking about the virus, they start talking right away about African-American women. So we've gotten this label that's really not a good thing. It's almost as if, as an African-American woman, we're the most vulnerable, but we're also the ones that are most ostracized as a result of it.
We've already got strikes against us because we're African American and we're women. The transmission rate from women to men is almost nothing. But the transmission rate from men to women is very high. We're the ones that suffer the most as a result of it.
Even in Africa, most women don't have a choice. They're getting raped, they don't have too much say-so over their own bodies, and they're getting infected and infecting their children, and then they're dying. It's really bad.
What HIV risk factors are of special concern to African Americans?
Are there any specific aspects of African-American culture or identity that give you strength?
That no matter what, it doesn't matter what we as women go through, we just have to do it. We don't have time to feel sorry, to get depressed and fall into a nostalgic state. We have to do. We just are very strong.
There's a movie called Yesterday, where this woman gets infected by her husband. Her husband is in Johannesburg, she's in this small, remote village. She went to tell him that she had been diagnosed HIV. He beat her, like she was lying, or it was her fault. He became very sick, and he had to eventually come home to her. No matter what she was going through, she still had to care for the family. The village had thrown them out, so she had to build a hut for him. Never mind what she was going through herself.
You can't think about how tired you might be -- it doesn't even matter, even when you start talking in terms of relationships, you just gotta do it. Men are whiners, you know -- "I can't do it." It's not even a thought for women. It's not even something you contemplate. You just do it.
What is the biggest change you'd like to see in HIV treatment, prevention or education for African Americans?
Women are getting more noticed now. Domestic violence issues, mental health. The [New York state] AIDS Institute recently came up with a new pilot project. Instead of trying to teach prevention and safer sex, they're teaching empowerment, self-esteem. Because once you're empowered, and start feeing better about yourself, you will demand certain things: "Look at you, you're beautiful, you deserve better." Then you start doing small exercises -- it's all baby steps. "Look at some things that happened where you were fearful of taking that next step or taking a risk. But once you did it, the next risk wasn't nearly as difficult." And then the next one becomes even better, and then that's how it works.
What about HIV treatment and access to care?
I think that health-care workers need to listen to the patient. I can't tell you the doctors I had to educate. Two years ago, I finally got a doctor who touched me. How are you gonna diagnose me or give me any kind of proper care when you won't even touch me?
The last time I was hospitalized was February 2005, I couldn't believe the way I was treated. In the emergency room, she told me I had PCP pneumonia, which means full-blown AIDS. She hadn't even taken a sputum yet -- what are you talking about? I couldn't believe it. They put me in an isolated room. I said, "I'm gonna adhere to my medication, I'm not gonna be noncompliant." One day I came out to look for a nurse, and I couldn't believe they actually had my name on the door, "PCP sputums," so they had already disclosed my status, telling people what I was there for. I took pictures -- it was horrible.
Do you think the Bush administration is doing enough for the black epidemic?
Oh, absolutely not. Bush is crazy. He's actually doing more cuts.
What are some of the main myths about HIV that you hear in your community?
There's so many. Recently, a friend of mine told me -- she's in architecture -- she went over to a friend's house, and there happened to be a client there, and this client said to her later that she was afraid for her children because she ate on the same plates.
What are your fears and hopes for the next generation of African Americans as they face the risks of HIV?
I think that, to some degree, it's gonna be a form of wiping out a big portion of our race. It's incredible how they've tied HIV into this whole Medicaid/Medicare thing. It's gonna come to a point that people are gonna use their benefit cards to try to access care, and it's just not gonna happen. Our legislatures are talking about some of the medications -- the co-payment's gonna be like $120. That means people are not going to get that medication.
I realize the medication is very expensive, and I commend a lot of the pharmaceutical companies for the programs they have available, but it's just ridiculous. It's a moneymaker. HIV is a pimp. Everybody makes money off this.
What has been your experience with HIV treatment?
I would probably be dead if I didn't educate myself about HIV, blood work, CD4 counts and all the rest.
The first time I went to the Infectious Disease Clinic at Nassau University Medical Center, the doctor took out a prescription pad and stated that he was going to give me AZT. I stopped him and said, "How can you prescribe AZT when you know absolutely nothing about me?" I said, "This is what we are going to do. First, take some blood, then, when the blood work comes back, we will sit down and discuss what is best for me."
The only thing they do for me in the clinic is take my blood every three months. I'm not on medication. But I've been going to this clinic 13 years, and they still ask me, "What medications are you on?" It's incredible. I've been put in the same category as everyone else.
It took me years to realize for the first time -- that's why I'm so excited about the long-term nonprogressor research -- I never fell into any category. However, I was always treated like I had full-blown AIDS.
Do you have any other illnesses that have complicated your health and your treatment?
I have hepatitis C -- like a lot of former injection-drug users with HIV. But it's not active; it's undetectable. And I have blood clots and I was diagnosed with neuropathy, which is associated with HIV. They always associate it with HIV, and I think it's horrible. I have a cold because I have a cold. I don't have a cold because of HIV. If I get sick with pneumonia, it doesn't mean that it's HIV related, but that's the way they categorize it.
What is a long-term nonprogressor?
Long-term nonprogressors are people who have been living with the virus for, say, 10 years or more, have never been sick, never taken any medication, always had a relatively high CD4, and I think less than 50 on the viral load. My viral load has always been undetectable. I wish I could get a clearer definition beyond that because there's like 10 different possibilities.
This is gonna blow your mind. There's a receptor called CCR5 and one called CXCR4. Now, those two and some others aid the virus in getting inside a cell and multiplying. So that's where you develop your viral load. What's happening to me is, they think the CCR5 and the CXCR4 have somehow disappeared [or mutated]. But the funny thing is that this only happens in Caucasian people. And it gets even more incredible -- whatever's happening with the virus is keeping the hepatitis C at bay. It's just lying dormant inside.
Does being a long-term nonprogressor make you feel different from other people with HIV?
It makes me feel very different. I cannot relate. I've been in support groups. So I could understand what the other people in the group were talking about, I started to educate myself about the medication and the various side effects. When they would say that this or that was happening to them, at least I could contribute to the conversation based on what I'd read.
When I'd start saying, "I went to the doctor today, and my CD4 was 1,905," the first thing they would say was, "Well, give me some of those T cells." And I thought that was nice, but I still have fears: Is this gonna change? Every time I take my blood, I'll be like, this is probably the time that my CD4s are gonna go down, and my viral load's gonna go up.
For the first time in 2005, I was actually able to talk to another woman who felt the same way as I do. And in this group through Massachusetts General Hospital, I've been able to find people that I can identify with. We don't know what's happening to us. I can't tell you how many times I've been retested. One time I was accused of trying to falsify records in order to get Social Security. It's been an incredible journey.
Did a doctor explain to you what a long-term nonprogressor was?
I learned it basically on my own. I had one doctor last year who actually at my hospital bed sat down with me for about two hours and explained to me how this whole thing works. That was in 2005 -- I've been living with it since 1993.
When people say things like, "Give me some of those T cells," does it ever feel like they're resentful?
Absolutely. They're very resentful to me. I can't even be happy and share recent blood work with them because they might have T cells of 25 or 100 -- they're not trying to hear what I'm saying. And that's always been my dilemma. Who can I feel safe to talk to about what I'm feeling?
How did you choose your current doctor?
He was available. When I started working, I couldn't go to the hospital during the day, so they have evening hours on Thursday. I'm teaching him more than he's teaching me. I tell him everything. I talk to him just like I'm talking to you.
Do you think you are getting the best care possible?
I think I could get better, and I'm in the process of trying to do that now. I want to get all my care in Brooklyn -- I still commute to Long Island.
Is your doctor an African American?
He is Indian, I believe.
Do you think an African-American doctor can understand and treat African-American patients better?
No. When I became a case manager, I started trying to change my care. So I go to St. Vincent's. I met this doctor, and she was an African-American woman. I figured, "Great, I'm in the right hands now." She's going through her computer looking at my blood work, and I noticed a change in her whole attitude, her whole aura.
So I said to her, "Excuse me, I feel something different is going on here with us. What's the problem?" She said to me, "What are you here for?" I said, "What do you mean what am I here for? I'm here trying to get primary care." She said, "Primary care for what?" I'm like, "I'm in the infectious-disease clinic -- for HIV, what do you mean, 'For what?'"
So she said, "Do you know what your CD4 is?" And I said, "No, but I'm sure you're gonna tell me." She told me it was 1,905, and she said, "When were you tested?" And I told her. She said, "Are you sure that you're positive? You have very, very high CD4s and 3s and 8s, and you have to understand that most people who come to this clinic are trying to obtain medication so they can sell it."
I never went back. I actually tried to get a hold of a case manager to explain what had happened, but I just eventually let it go.
What kind of relationship do you have with your doctor?
I have a great relationship with him -- when I see him. He's a pathologist, so he's in the laboratory Monday through Friday. He only comes to that clinic on Thursday nights. So if something happens to me, or if I become sick, then I have to access the emergency room, which I think is really ridiculous. He usually doesn't even know that something's going on with me until I go to visit him. I've been hospitalized, and he'll say, "Pam, what happened to you? You missed your last appointment. I missed you." And I'll be like, "I was in the hospital." He was like, "Nobody told me."
The other thing is that he remembers everything -- I can't believe some of the things. He's now teaching, so he'll say, "Well, she had this done back in 19 -- " and I'm just looking at him like, "I can't believe you remember that." And he's like, "Yeah, I remember everything about you." Which makes me feel like he's not just hearing me, he's listening.
Does your doctor treat you like a partner in terms of making decisions about your health?
Absolutely. Actually, because I'm so educated about my care, he'll say, "Well, what do you think we should do?" He heard me speak at one of the conferences, and I think he just took a whole new light on me when he heard me talk. A lot of the doctors treated me differently because I have power in my hands.
In the clinic, the medical staff, down to the nurses, looks at us HIV-positive former drug users as a dirty thing. They treat us unfairly, and if you think I'm not gonna say anything, you're absolutely wrong. I'll take it to the proper people. If they're making me feel that way, how could they possibly be making somebody newly diagnosed feel? I can understand why some people don't go back.
Do you have a particular health regimen that helps you stay well?
My spirituality. I take vitamins and I laugh a lot. I think that is so healthy, laughter. But I would love to -- I am starting to get more involved with natural stuff -- I drink noni fruit juice and things of that nature.
How have your relationships with family and friends changed since you were diagnosed?
My oldest brother, the first time I disclosed to him, he just like drove me crazy. He went on this fanatic trip -- he has to cure me, I need to take herbals and teas and all this. He's overly protective.
With my friends, I introduce myself: "My name is Pam, I'm an addict, and I'm HIV positive." Now, you've got a choice right then and there if you want to take this any further. Either way, it's still not leaving me. When I walk away from you, I'm still an addict, I'm still HIV positive, and I'm still Pam.
Have you been able to be open about your HIV status with the people closest to you?
My partner will tell you that's how I introduced myself to her. That's how it is with all my friends. I want to talk about some of my fears with all my friends, and everybody knows my status. Everybody.
Have people ever responded in a way that made you wish they would treat you differently?
Most people would have embraced this, but it bothers me. Some of my close friends are professionals, they're directors of agencies or whatever. When I would call in sick -- my back is hurting or I'm a little under the weather -- they automatically assumed that it was associated with the virus, and they wouldn't be so hard on me, in terms of watching my sick time.
I brought it to my director's attention. I was like, "Jill, if I call and tell you my stomach is hurting, you say, 'OK, this might be the virus doing something.' You get overly excited over it. My stomach's hurting probably because my period's getting ready to come on."
I used to tell them, "Why do you do that?" because I've seen people actually play on that. I've got a friend now that does it all the time. She doesn't want to go out and work in the field in the bad weather -- "I got the virus, you know I gotta be careful out here" -- and they fall for it.
I didn't want that kind of attention this time. That's why I haven't disclosed at my present job. But I think I'm getting closer to telling my supervisor. At the recent World AIDS Day event, we were doing OraQuick [20-minute HIV-antibody] testing, and I was so afraid. I thought, "What if I stick myself accidentally when I do the test?" I was just so close to telling them, "I don't think I should be doing this." But then I just thought, "If I stick myself, I should just open a new kit."
Where do you go for support?
Right here where I'm at. I have a phenomenal relationship. And my babies. The little girl poodle is like a big puff of hair; she's white, and she's a toy. And the boy is a miniature. He's white also. And then my partner, whom I dump everything on. She'll listen to me whine and complain and then she'll cuss me out, like, "So, OK, now what are you gonna do? Because you're not going to sit in it. You have to do something about it."
How does your church address HIV?
Oh my God, Unity doesn't discriminate against anyone. Most of the people in there are gay and lesbian, but they are so incredible the way they deal with transsexuals, transgenders. They address every aspect of HIV. When I first went there and saw they have classes and support groups, it blew my mind. I've never seen a church so free with that.
They sing a song, and then they have a section where you go around the church and you hug everybody and tell them that they're special. And you cannot just sit in your chair because someone will come and hug you.
How has your sex life changed since you become positive?
Absolutely nothing has changed. I mean, we tried all of the dental dams and all that stuff. If anything, we've just gotten very creative. I get nervous because I feel like when it's time for my monthly, I feel like it's contaminated. So that's a time when I really push her off a lot, and she just loses her mind. One thing she said is that it doesn't matter -- and she really has demonstrated that.
Do you feel that if you practice safe sex, it is necessary to tell a sex partner that you are positive?
I think that anyone that's HIV positive has that responsibility because there is no safer sex. I mean, we put that term on it, but there's also possibilities of the condom breaking. You don't have the right to take someone else's life in your own hands. Give that other person the choice. You're talking about sharing love, and maybe not the way everybody else would picture it, but I think that when you are making love, you're in another world, and it's so beautiful. The other person has a right to know.
Did you make any New Year's resolutions?
No, actually. What I've been really praying about more is a closer walk with God. I want to get more spiritually connected.
What books, movies, music or TV shows have had a big influence on you?
I'm reading some empowering books now. There's a book called Hinds' Feet on High Places. It's a very old book -- you get it usually at the Christian store. It's just changed my life. I still re-read it. It takes every kind of fear or apprehension that you might have, and it turns it into characters. The main character's name is Much Afraid. She lives in the Valley of Humiliation. She has cousins called Craven Fear, Pride and Resentment. And they're all trying to discourage her from going to the high place, where she's going to transform and become this beautiful creature. She has hinds' feet -- club feet. She's deformed. And she talks to the shepherd, which is God, and he aids her in getting to the high place. He could just take her hand and just take her up to the height of the mountain, but she needs to go through a journey. So he gives her two guides called Sorrow and Suffering. And they're going to transform once they reach the high place.
What's the greatest adventure you've ever had?
When I wasn't even clean eight months, I got a scholarship to go to San Francisco with HIV University. GlaxoSmithKline sponsored it. That was an awesome experience. It was a team of women from all over the world, and we all told our stories. What they did was to say, "Let's bring these women together; let's teach them how to facilitate. They can take this information back to their communities." When the days were up, it was like we had known each other all our lives. It was the most incredible experience I have ever had.
They even gave us money to start our groups. One woman's name is Rebecca Denison -- she calls her program WORLD [Women Organized to Respond to Life-threatening Disease]. She's positive and she had twins, and her husband's negative. They were involved in everything that we did in those nine days. She was able to change a lot of people's lives.
If you were granted one wish, what would it be?
For God to use me as a vessel to get the message out. I'm the gardener. I plant the seed, and that's the information I give you. Down the road, you water the plant. Somebody else may have to re-root it. But when that person is ready to blossom, we've all had something to do with it.
Anything else you'd like The Body's readers to know about you?
That HIV doesn't control me. HIV doesn't rule me. It's a tenant that I'm still trying to get eviction papers for.
Click here to e-mail Pamela Neely.