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Anonymous

By Laura Jones

January 2006

anonymous  

About Anonymous



Table of Contents

Personal Bio

Tell us a little about yourself.

I live with my partner, who is also HIV positive. We've been together for two years now, and I can tell you, he is the half that makes me a whole.

We've just finished having our own home built in a neighborhood of Chicago where the community is primarily African American but beginning to become interracial, traditional becoming contemporary. It's a fascinating thing to see, every day someone walking their dog or riding their bike who is not a person of color. Most of the neighbors are taking a wait-and-see attitude toward us new people.

I work as a substance-abuse counselor at a Chicago AIDS service organization.

Where did you grow up?

South side of Chicago!

What did you want to be when you were a kid?

A lawyer.

What kinds of work have you done?

Most of my work has been in advertising and sales. And it wasn't until I went through what I had to go through living with HIV and substance abuse that I began to take my past and use that to be of service to other people. That's why I went back to school to become certified as a substance-abuse counselor and became involved in HIV/AIDS. I was living with it for so long that I thought, "Hell, I guess I know something about it!" My career changed from Fortune 500 companies into social service. I get the greatest benefits from what I'm doing now, even though it's not a lot of money, because it's a giving-back feeling.

What work did your parents do?

My father was a laborer in a bakery for over 30 years. My mother was a homemaker. She took in a lot of work -- did sewing, made quilts, was the policy provider in that neighborhood.

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Policy was a gambling game in the black community -- it was based on little numbered strips. She distributed the policy strips and collected the money. She sold Avon. My mother was really an entrepreneur and the bread-provider for the family. The home was actually paid for through all of her little ventures.

Who are the most influential people in your life?

Gandhi! If you ever read Gandhi's writings, it'll just change you completely. And once again, family -- I have a sister who's been living with cancer since the early '80s. I've seen her struggles, and there is nothing she can't deal with or overcome. She had a brain tumor the size of a walnut, was one of the first persons at Michael Reese Hospital in Chicago to attempt having the surgery, when there was like a 50/50 chance of survival. So there's a lot of encouragement that comes from her.

Tell us a little bit about your partner.

We've been together for two years, next month. We met going through an HIV-treatment education program at an AIDS service organization, dated a moment or two, and then moved in together and got a dog -- Angel, our pit bull -- and we've been one happy family ever since.

Do you participate in an AIDS service organization? Have these organizations been helpful to you in improving your life and health?

Outside of the work and activities I do with the one organization, not much anymore. I used to volunteer -- one organization was a homeless shelter, where I would try to identify anyone in recovery or living with HIV to help get them services. The other was Goldie's Place, which is a full-service organization for the homeless, and I did a lot of menial-type service work, helping them in their clothing room and stuff. I'd like to get back into that -- it is definitely something that I feel improves my health, giving and not expecting anything in return.

Do you consider yourself an AIDS activist?

No. For me, that would entail getting more involved with what takes place politically with HIV, talking to decision-makers in social service organizations, being politically connected and knowing all of the changes happening with pharmaceutical companies and things like that. Personally, I could see where others may see activism in the work I do, talking every day with people who are living with HIV, but that's just something I do and enjoy doing.

Are you a religious or spiritual person? How does your church address HIV?

I am Muslim now, but was raised a Christian. It wasn't until I could question religion that I began to look into Islam and realize the peace that's inside Islam. I think what got me even more was the means to discipline myself. The discipline and the peace is really what has helped me living with HIV a whole lot. To the best of my knowledge, there's not really a lot of conversation surrounding HIV and AIDS in the Islamic community. One of the tenets of Islam is that what happens inside of the family, stays within the family.

HIV Diagnosis

How did you find out you were HIV positive?

I was experiencing gastric ulcers in '85, and the doctor was trying to rule out anything else that might be wrong with me. Because I was honest with my doctor at all times, he suggested that I "take this test" -- I didn't know what it was. So I discovered, after I went back a few weeks later, that it was positive.

How have your feelings about living with HIV change over time?

Well, being diagnosed, I felt that I was going to die. The doctor stated to me that only 10 percent of the people with this disease will survive, and I'm thinking, "Well, If only 10 percent survive, then there's a 90 percent mortality rate." So considering the lifestyle that I was part of -- sex, drugs and rock and roll, tongues, toes and titties -- I figured that, certainly, I was part of that 90 percent, so I would just do whatever I could to enjoy today as if there was no tomorrow.

After years of a reckless lifestyle, I woke up one morning and discovered that, "Wow, it's been 15 years, I'm healthy, I have a very good immune system, and I'm still living!" So I figured that either the doctor was wrong or that God had another plan for my life. And that's when I began to turn it around a little bit.

What conditions in your life put you at risk for getting infected?

Well, certainly multiple partners. I was living a very bisexual lifestyle. I was in college in the mid-to-late '70s, and it was all about having a good time.

What advice would you give someone who has just tested positive?

Well, I break it down to being diagnosed with diabetes. It's a very manageable disease today -- there is no cure, but if a person does what needs to be done to maintain their health, then hopefully they should never be bothered with the complications due to HIV itself.

When you look back, what would you have needed in order not to get infected?

My thoughts on that stem from a spiritual perspective. In life, we have different challenges that we must face. I'm thinking of the guy in the Bible who kept telling God, "If you'll just remove the thorn from my side, my life would be so much better ..." Paul! It was Paul, who had a great turn-around in his life from persecuting Christians to becoming a Christian himself and leading people to Christ. All of us have a thorn in our side that we must bear in order to get where we must get, and I feel that this is just something that I had to go through.

What do you think is the first thing someone who has just found out they have HIV should do?

One of the first things to do is to seek medical advice; to find out what stage the disease is at in your body. Hopefully, it's still in the early stages, where a person would not have to go on any antiretroviral medications but simply have a relationship with their doctor and get proper care.

How has HIV changed you?

There are many things I would not have gotten into. One, I would not have been in and out of Cook County Jail, committing misdemeanor criminal acts to support a drug habit that eventually went full-blown after I discovered that I was HIV-positive. I didn't give a damn about much in life, and I did things that would, you know, say that I didn't care.

African-American Identity and HIV

When did you first realize that you were African-American?

For me, growing up, it was very obvious. Taking the rides down south to Memphis and certain parts of Mississippi with my dad in the early '60s, there were experiences that linger in my mind today. There was only one white family on my block—and I remember that family as probably the best family in that neighborhood, because I was a paperboy and they'd tip the most.

There used to be a store called Chicago Community Department Store (CDS) -- that's where your mom and dad could take you and you could buy an entire outfit for $10 or $12. You had to shop in the daytime as a black person, and there was a viaduct that divided the racial line in that area. Chicago has always been known for its viaducts being dividing lines for racial and cultural communities. Whenever we went to CDS we had to make sure we were back under that viaduct before it got dark -- for your health and safety, you'd get home before dark.

It was a thing in the African-American community that everyone took care of their own neighborhood. That was a good feeling. If the neighbor's fence needed painting, it got done. If there was a vacant lot in the 'hood, it was never caught with debris in it. There were block parties to clean up the community.

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There was a great sense of community, and I hate that it's not there anymore. The kids now are taking it totally the wrong way. When I was growing up, gangs were organized to take care of their community, not necessarily to go out to fight rival gangs, but to let it be known that, "We're here and we take care of our own." That's what I miss.

To what extent have you experienced racism in your life? How have you learned to deal with it?

There was a drugstore, and I can still remember as a child not being allowed to sit at the counter. This had to be when I was 11 or 12, in '67 or '68. In the summer the family would drive to Memphis, and I can remember so many times going down I-57 and being told, "You better fill up at this station, because when you go through Cairo you certainly don't want to stop there!"

When we were in Memphis, I remember seeing the "For Whites Only" signs -- not being used anymore, but still there.

I remember in '67 or '68 when Mayor Daley, old man Daley, put out the "Shoot to Kill" order -- anybody caught outside of their home or neighborhood after certain hours, shoot first and ask questions later. And it was mostly in the black communities, and had a lot to do with the riots on the west side behind the Democratic National Convention. I remember the police assassination of [Black Panthers] Fred Hampton, Mark Clark, Bobby Wright, that whole household -- my brother had business on the west side and he came home that day explaining what was going on. And I'm so proud of the ones who are still around who were part of the Black Panther movement who've gone on to become key figures in Chicago city politics, like Bobby Rush.

Even though a lot was noticeable, I simply chose to overlook racism. When I landed a job working for a Fortune 500 company in Philadelphia as the only black sales rep, I asked during the interview process, "Why are you guys hiring me from Chicago to come out and work in Philly?" And the guy was perfectly honest with me by stating, "You know, we have a problem finding African-American candidates for this position and keeping them once they're employed." I could soon see why, 'cause there was a lot of racism in the organization.

What do you think is the biggest challenge facing African Americans today in terms of HIV?

Lack of knowledge. And it sort of goes back to the old adage, "If you want to hide something from a black, hide it in a book." It's not that the knowledge is not readily available, it's that the knowledge is being disseminated into the African-American community in a very general way. When you're trying to identify with a specific population, there's sometimes a need for creative ways of doing so. I know on Black Entertainment TV (BET), a lot of the HIV-prevention advertisements target the African-American community and their messages are very clear. But that's a cable channel, so how many people actually have cable, when you consider the cost?

What HIV risk factors are of special concern to African Americans?

One of the risk factors is, when you take a community such as Chicago's Rockwell Gardens housing project, and you have individuals who feel both mentally and physically that they're isolated and can't go beyond that area, what goes on in that area stays in that area. And what ultimately ends up happening in that area is that if you have one person who's infected, that one person has the potential to infect a whole slew of people in that area. That was seen back when the Chicago Department of Public Health detected a particular strain of syphilis that was only showing up in the Rockwell Gardens area. And how do you have one strain of syphilis only in one area? It had to start with one person infecting a multitude of people.

Are there any specific aspects of African-American culture or identity that give you strength?

I'm not sure. My response to that would be that I had to seek my help in the "gay white male" agencies in the city.

What is the biggest change you'd like to see in HIV treatment, prevention or education for African Americans?

Once again, just to get out the knowledge that HIV care and prevention are available. Certainly if you provide the information, you can begin to change the attitudes that many African Americans have toward HIV and AIDS. And if you can change some of the attitudes, the end result would be a change in behavior.

There's still a lingering attitude in the African-American community that this is something that doesn't affect us. That that this is a disease for homosexual and gay people only, a disease that affects only people who are doomed to die from their sins -- as indicated in most of the African-American churches. This is beginning to change, but not fast enough.

Do you think the Bush administration is doing enough for the black epidemic?

I think he's doing just what he wants to do, which is to make sure it stays with people of lower economic status, whether it's the African-American community or all people of lower economic status.

How would you grade Bush's performance?

Very poor.

What are some of the top myths about HIV that you encounter in African-American community?

I think there's still the thought, "This could not happen to me." I think it goes back to that whole theory of invisibility -- the African-American community thinks it's a disease that won't affect them, perhaps that even they're immune to it. The reality is much different!

What are your fears and hopes for the next generation of African-Americans as they face the risks of HIV?

Well, today it's HIV, tomorrow, it'll be something else. And I stay pretty optimistic that soon there will be, if not a cure coming down the pipeline, some kind of vaccine that will be prevent the onset and the spread of HIV.

HIV, Health Care and Treatment

What has your experience with HIV treatment been like?

My own personal opinion of the health care that I've received is that it's been great, because eventually when I got off the pity pot and realized this was a disease I could live with and I began to seek adequate treatment, I was able to find it very easily. I have not been ill yet due to my HIV status -- after 20 years!

What HIV medications have you been on?

The initial ones, the AZT [zidovudine, Retrovir] and ddI [didanosine, Videx]. Then I moved on to the first protease inhibitor I was on, which was Crixivan [indinavir]. And then I switched over to Viramune [nevirapine], Zerit [stavudine, d4T], and Epivir [lamivudine, 3TC]. Now I'm on Viramune and Emtriva [emtricitabine, FTC]. Never used Sustiva [efavirenz, Stocrin] -- no dream stories!

How do feel about your meds now?

I feel like I want to go off it, as I do sometimes. I have periodically taken drug holidays, with or without the advice of my doctor. And that's simply because there are times when I feel like I'm a slave to the medication, and I no longer want to have that feeling, and so I adopt the attitude, "It is what it is, and what will be, will be." And somehow or another, the God of my understanding has always allowed me to bounce back from the drug holidays. So that's it!

Did you begin treatment after you started recovery for your addictions?

No, actually that was a roller coaster because I started meds in '91 to '92, and I didn't get into recovery until 2000. And trying to take meds and take a trip at the same time didn't work -- just put it like that.

Did the periods of incarceration affect your treatment at all?

Actually, in the state of Illinois and county of Cook, treatment is probably better behind the bars than it is on the streets, because it truly is managed care, and you do have easy access to the health care providers. They put HIV/AIDS on the priority list.

For me, it really wasn't that difficult being HIV positive in prison. You're living inside an environment where there is the fear of people discovering you're HIV positive and being stigmatized and having to deal with the so-called bullies, but I felt pretty comfortable. I was always my own man. I have seen people who fear things like taking meds because of having a cellie who might find ways to kick them out, but for me, I knew that my health was more important than what other people thought.

By law, only the medical team is supposed to know about anyone's HIV status. The reality is that many of the nurses and doctors and health educators are having sex with the officers, so if an officer is taking care of a wing that a health care provider that they're dating has a patient on, that information does get out. I've had officers come to me and say, "You want to watch out for so-and-so, because he's HIV-positive," and I'm like, "Um ... OK! Alrighty then! How'd you find that out?" Only to find out that the officer was dating someone in health care.

What about HIV prevention in prison?

There is no HIV prevention when you're incarcerated, because HIV prevention would mean that they'd allow for the use of condoms. And that's a big debate right now -- if condoms are dispensed in the correctional system, that would promote "promiscuous sexual activity." Which of course isn't happening already, so they say. But the reality is that you take some guy who's been locked up for 15 or 20 years, sooner or later they reach a point where they've got to find love in whatever place they can find it.

What about HIV-transmission risks associated with injection-drug use in prison?

IV-drug use, I believe, is not prevalent in the penal system, simply because it's not convenient to get a hold of syringes and things like that. Plus, pretty much any facility that you'd be in, to have possession of a syringe is like having a weapon, and it is an automatic sentence of three to five years. So there's just your usual alcohol, and cocaine and heroin snorting, and there were ways that that was flowing just as readily as it is on the streets.

Have you ever had side effects from HIV medication?

Lipodystrophy! My greatest side effect from the Crixivan was the buffalo humps and the -- What else do they call them? Anyway, I lost my ass. My ass went to my stomach, and my thighs went to my shoulders, I guess. That's about the only side effect I ever had. Never had to go off anything specifically for the side effects, except the Crixivan.

How would you rate your ability to take your meds on schedule?

Above-average.

Do you have any special rituals or preparations that help you remember to take them?

Yes, very much so. I can pretty much count over a year's time how many dosages I've missed. When I take my night meds, I also take the next dosage out and set it on my dresser. So when I get up in the morning and put my wallet and keys and everything in my pocket, my morning meds are always sitting right there, so that's the reminder to take them.

I think Crixivan was the most challenging regimen I've been on, only because you have to take the doses eight hours apart. At that time, if I did not take the first meds until 8 a.m., I would end up having to get up late at night to take meds. And I believe you had to take it on a full stomach, and at that time I was not eating breakfast, so I had to force myself to eat breakfast to take my meds. The other regimen challenge would have been any time acyclovir [an anti-herpes drug that some doctors believe also slows the replication of HIV] got added, because that was five times a day and four pills each time.

How did you choose your current doctor?

My insurance chose my doctor. My doc asks to see me every six weeks. I hate going into an HIV specialist's office because it's always a reminder that you're living with HIV. You see people sitting around the doctor's office who have gone into the late stages of AIDS. So I miss a lot of my doctor's appointments.

Do you think you are getting the best care possible?

Yes.

Is your doctor an African American?

No, he's not. He's Caucasian.

Do you think an African-American doctor can understand and treat African-American patients better?

I wouldn't think so. With HIV, it's really about knowing HIV. Anyway, my doctor treats me like a partner, very much so. There's a difference between making the statement, "You need to do X," or, "I suggest you do X, what do you think?" And that's the approach my doctor uses.

Do you have a particular health regimen that helps you stay well?

I used to work out. I'm waiting on the weather to get warmer, because I enjoy the 4:30 to 5 a.m. jog around the park. But for me, the most powerful treatment for HIV has always been a very good mental attitude. Never allowing anything to stress me out, always seeing the bottle half full instead of half empty, and always knowing that it could be worse. Because it has been!

Disclosure, Relationships and Sex

How have your relationships with family and friends changed since you were diagnosed?

I have always had a very caring and loving family throughout my entire life. When I was in a position to disclose to them about my HIV status, they offered any kind of help that was needed. And I thought that was pretty good after having seen so many people get kicked to the curb after disclosing.

As for my sexual orientation -- yes and no. There's a member of my family, a sister, where if you tell her anything, it's like you've told everyone, and that conversation took place sometime in the early ‘80s. Even though I lived a lifestyle then that was not very open to them, they knew. It was not until probably just recently, with the relationship that I'm in now, that it became extremely open and obvious to them. My partner and I purchased this home together. And recently a power of attorney and a will was put together and copies were distributed to a couple of members of the family, so I believe they all know now that it is what it is, and there's nothing we can do about it!

My family has always taken a back-seat approach to my recovery: "When he's good and ready, he'll come around." And when I was getting ready, they were there.

How do you decide whether or not to disclose your HIV status to someone?

My attitude toward disclosing is "on a need to know" basis. The stigma is still there. Do I help to dispel that stigma? Yes, no, I don't know. People have attitudes, and they'll have them no matter what you say or do, and I don't do much to change their attitudes.

Why did you agree to do this interview with The Body but request anonymity?

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I don't want to have to deal with all the stigma. And for a very personal, practical reason: I'm writing a book about my experiences -- the sex, drugs and rock and roll, AIDS recovery -- and I feel more comfortable being anonymous when I tell my stories until the book comes out with my real name.

Did you have any trouble with your HIV status while you were incarcerated?

For me, the attitude was quite tolerant, but it's all about who you are. I would fight, so that made all the difference in the world. Even though I wasn't the biggest or the strongest, I didn't mind getting my ass whupped. People think differently when they're messing with a guy who doesn't mind getting his ass whupped: "Wait -- he'll fight back, and he might end up getting the good of me a little bit, so I don't mess with him."

I believe the statistics here in Illinois are that something like 2 percent of incarcerated people are HIV-positive but that 60 percent engage in sexual behavior. So I think some guys inside the penal system live with that fear that, "Yeah, there's a chance that I may be too, so who am I to put anybody else down when I'm too afraid to take the test myself?"

What are the best and the worst responses you have ever gotten from disclosing to someone?

Well, nobody ever threw a party for me, but probably the best response I ever got in a dating situation was to hear someone say, "Oh, I'm glad you told me. So am I!"

I've only had one negative situation, some time ago. I was living in an apartment and one of the guys I was attending school with came by and was interested in becoming my roommate. It wasn't until I disclosed my HIV status that his decision to move in just totally changed. And he didn't have the nerve to tell me it was because of my HIV status until I pushed for the reason. That was in 1998, but it was the first time I feel I had ever been rejected due to my HIV status, and it hurt me a lot.

Where do you go for support?

Having a large family, I'm surrounded by love. I have a 75-year-old sister who, if I want to feel loved, all I do is surround myself with her. Family and friends and coworkers are very important to me as far as getting that love. Having one-on-one conversations with people, to be sincere and honest, helps a whole lot.

How has your sex life changed since you become positive?

I've never experienced rejection from potential sex partners because of HIV. I was 30 when I was diagnosed. I lived 10 years in a denial cocoon, and so for 10 years in my mind I was not HIV positive. I just kept thinking, "OK, they're going to come out with a shot that's going to get rid of it," -- well, they didn't and they haven't yet.

I think in '91 and '92, when I first went on meds, the reality that I was really HIV positive hit me the hardest. I went through maybe 35 to 40 days of mental debate whether or not I was even going to start meds, because that would mean I truly had HIV, and I wasn't ready for that.

I think I began to take a different approach to living with HIV as far as my relationships, because now I had HIV meds in the house, people coming over -- "Do I leave them out? Do I put them up?" -- those kinds of decisions had to be made. I think at that time I was still hiding my meds the majority of the time.

Do you have a policy about if or when you tell a sex partner that you are positive?

Well, yes and no. My policy is that I don't want to do anything to anyone that I wouldn't want done to me, and that causes me to not do a lot of things. I'm sort of grateful now that I'm in a monogamous relationship and don't have to worry about dating anymore. Actually, I kind of violated the Illinois law and I did not disclose -- I just protected myself and those I was having sex with.

Do you feel that if you practice safe sex, it is necessary to tell a sex partner that you are positive?

Once again: yes and no. I think each person that's HIV positive has a moral as well as a legal obligations to inform the person you're having sex with that you're HIV positive, and when you violate that what you've done is rob that person of their right to choose whether or not to have sex with you. And that's wrong.

But the reality is that two people get together and it's an extremely horny and heated situation, and there may not be time to sit down and have that two-hour discussion about HIV and AIDS -- it's a zip-zam-thank-you-ma'am.

Certainly, for every decision we make come consequences and repercussions, and that's something I always have to think about. It's not as easy for me living a life of sobriety to do something like that, because you begin to add to the list of things for which I'll eventually have to make amends, and I'm not trying to add to the list because my life is full of 15 years of things I have to make amends for.

Resolutions, Adventures and Likes

What books, movies, music or TV shows have had a big influence on you?

Definitely W. Clement Stone's book, Success Through a Positive Mental Attitude. Really my reading is along fictional lines. I love John Grisham's books! They're so real, and you get so lost in the characters and you're right there with them. Those thrillers are a way to kind of escape from reality.

What's the greatest adventure you've ever had?

Having my home built! First, in my wildest mind, I never thought I'd be a first-time homeowner at 50 years old. Then to just see it built from the ground up and fight with the construction company to make sure everything got done the way it was supposed to get done. Having this home built for me was certainly an adventure, and I have 200 pictures to show for it, from the time they laid the foundation to the time it was completed. I have no idea what I'm going to do with all these pictures now!

If you were granted one wish, what would it be?

I guess it would be to see everyone living extremely peacefully and getting along in the real world.

Is there anything else you'd like The Body's readers to know about you?

You opened a lot of the cans and a lot of worms came out! More than anything, anyone who's perhaps just diagnosed would want to know that living with HIV is nothing like it was some 15 or 20 years ago, as long as a person does what they need to do and seeks medical care and maintains the best mental attitude around HIV/AIDS.




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