Cuban-born and Chicago-raised, Carlos A. Perez lived the first half of his life in a fashion that could provide Tom Waits with enough material for an entire album. Unsurprised by a positive antibody test in 1984, Carlos continued with his heavy drug use until "… on January 8, 1994, I was reborn. Certainly not to a religion, but I awoke in full restraints in a hospital bed. I had been on a nightclub, bathhouse, and drugging binge that began with my birthday on November 4, 1993… I saved sleeping pills, tranquilizers, and whatever else I could get from friends until I got ready to go. I left no note. I knew the few people that knew me well would understand." His suicide attempt failed, but it led to a new phase of life that included replacing drugs with exercise as his preferred method of emotional health maintenance. After six years on disability, Carlos returned first to full-time volunteer work and then to a new (and paying) career as a peer educator for others living with HIV.
HIV-positive since the late 1970s, Carlos is still here and going strong. He knows he's been positive that long since he was part of a clinical trial in the late 1970s and blood samples were taken. When HIV testing came out in 1984, his blood samples were tested for HIV. Sure enough, he was positive back then.
So Carlos is a living testimony to the entire history of HIV treatment. He uses his own life stories and treatment experiences to educate other HIV-positive people about their options, both personal and medical.
Who have been your mentors? Who do you look up to, and why?
The comedians Bill Maher and George Carlin, because they sound like me when I'm raging about politics, but they get paid for it. Chris Clason and a lovely man whom I will call Bob, started Test Positive Aware Network (an AIDS organization) here in Chicago in 1987, and they are my personal heroes. I also look up to Congressman Barney Frank, and I hold Harvey Milk in high respect. Then there are the artists like Josephine Baker and Oscar Wilde, people who had the guts to perform and write the way they did during the time when gay people had to be on the "down low."
What made you decide to speak out publicly about your HIV status?
My work makes me speak out publicly about my status. I had a 10-year gap in my work history due to being on disability, and I ended up working for the organization Better Existence with HIV (BEHIV) because no one else would hire me. I opened one of their satellite offices in the very area where I now live. From there I moved on to Test Positive Aware Network to edit the Chicago HIV Services & Professionals Directory. Test Positive Aware Network's services are all peer-led, so being open about my HIV status there was just a natural part of the job.
However, cuts in the Ryan White CARE Act services categories (courtesy of you-know-who) put that program in jeopardy -- in fact, there is not one dollar in Chicago now for information dissemination, which is the grant that paid for the directory. So those cuts led to me leaving Test Positive Aware Network to work with ACCESS Community Health Network (ACHN) in my new position as Rapid HIV Testing Program manager. ACCESS is an incredible health care organization that establishes clinics in neighborhoods with high populations of people who are underinsured or have very minimal healthcare benefits. The program I'm managing is a new demonstration project, funded by the CDC (Centers for Disease Control and Prevention), that's working to incorporate free rapid HIV testing into a point-of-care test to aid in the diagnosis of HIV infection, along with other tests that people get with their annual physical, just like pap smears, breast exams and prostate exams. I believe this should be the future of HIV testing -- not mandatory or forced, but offered with counseling and education so people can decide to know their status without feeling any shame or guilt.
What do you think is unique about your story?
I think I've gone through an interesting evolution in how I regard living with the "disability" of HIV. That goes back to when I first started working again, which is something I just didn't expect I was ever going to do after receiving my "death sentence" in 1984. But, I had been on disability for about six years after tearing my Achilles tendon while hiking with my partner, Mike. It was a complete rupture and I had to have surgery, physical therapy, the whole works. It took me about a year to heal and to walk normally again… without the limp the doctor said I would have to live with, thank you very much. Then one day, I saw a reflection of myself while I was trying to cross the street on crutches with videos I had rented in a plastic bag that I was carrying between my teeth, in order to able to maneuver the crutches. Suddenly I realized "What's the HIV 'disability' thing all about? This is disabled!" I knew then that I didn't have much to lose if it didn't work out working 9 to 5. So I took the job at BEHIV.
I questioned myself and this led me to begin volunteering at Open Hand Chicago where Lori was my "girlfriend" and many times acted as a caring mother, always listening, always believing in me as she does with all her clients and volunteers.
What do you think is unique about the audiences you try to reach when you speak out?
I know that many of them have had the same experiences of doom-and-gloom "my life is over" thinking, of death sentences and feeling less than, carrying guilt and shame and being horribly oppressed by society and falling into depression and having suicidal thoughts. So I speak to people from my gut, and I try to touch on all these feelings and emotions HIV-positive people have to face.
What's the best thing about sharing your story with others?
I can see it in someone's eyes when I've hit home. And I have had many positive reader responses to articles I've written in Positively Aware, Test Positive Aware Network's HIV treatment journal. I know of at least five men who started attending programs to stop using crystal methamphetamine after reading my article, "Crystal Death Amphetamine." I also received a touching letter from an inmate in Texas. We became pen pals and wrote to one another for the last two years I was at Test Positive Aware Network. I am in the midst of contacting him now that I'm settling in to my new job, so we can continue to communicate. This is a great reward for me, knowing I have helped someone -- especially a complete stranger!
What's the worst thing?
The emotion of sharing sometimes brings up my old demons, but I use that as a mechanism to keep me in check and keep me going to the gym instead of staying out until dawn on chemicals and wrecking my head and body trying to get through the next day. That is what I did for so many years to cope with emotion, so when those goose pimples come up on me when I'm speaking out I take a deep breath and give thanks that I am on the healthier side of life.
What do your relatives feel about you speaking out?
They think I have a lot of chutzpah. My mother, my gay cousin, and quite a few others in my family… we all love each other, and my speaking out has just made our relationships stronger. There are a few relatives that do not approve, and they have every right not to, just as I have every right not to communicate with them except for the occasional Christmas or Easter card. I treat them appropriately because they think my partner Mike and I will go to the "hot place" after we die. Shoot, we just went there for eight glorious days this February -- it's called Costa Rica, baby! I can deal with that kind of hell.
What does your partner feel about you speaking out? Has he spoken out in any way as well?
Mike is proud of me -- he thinks I have chutzpah as well. He speaks out too; he's very outspoken about HIV, our community, our society, everything. He speaks his mind even when we're at parties or fundraisers. We think a lot alike, which is why we fell for each other in the first place.
What have you learned since you began speaking openly about your HIV status -- about yourself? About HIV? About other people either with or without HIV? How has speaking out helped you, and how have you changed as a result?
I've learned that the mental anguish we go through because of the stigma around HIV is worse than the physical anguish caused by the virus. Naturally, I'm not speaking of those who are not aware of their status and don't find out until they've come down with opportunistic infections -- that's not what I'm trying to say. But it is imperative that those of us who know we are positive strengthen our minds first and then our bodies. After that, we are ready to take on the medicines. Without a solid mind and body, I believe a positive person will feel more side effects.
Can you describe your feelings when you were first diagnosed? Did you feel differently a few months down the road? How long do you think it takes to really process the diagnosis?
I was first diagnosed in 1984, but I knew on my way to the clinic that I had to be positive because I had so many risk factors. I've written an article about this called "The Little Dime Bag Envelope," because the slip of paper that had my results was inside the same little manila envelope that dime bags of pot used to be sold in. I thought it was so crazy to be handed this bag that enclosed what I considered back then to be my death sentence, when these same little bags were also being passed around parties for such a different purpose. I've always been attracted to opposites like this example -- a juxtaposition of issues like that can be so telling. They can also create paradigm shifts in our psyche and personalities.
I didn't feel any different when I got my diagnosis, because I knew I had to be positive months before I took the test. I was joking with myself -- praying to God, actually -- that I would stop this and that vice if I was negative. Everybody processes stuff differently. Since working in the HIV field, I have seen the opposite of my experience, which is people shocked, completely freaking out, stating right there in front of the staff they will commit suicide…it's incredible what happens to people when they find they're positive. That's why I do everything I can to put someone at ease when they're reacting that way. It's much easier to do this now -- sometimes all I have to do is say "Hey, I'm 45 years old and have been HIV positive since 1979." Then they really freak, but in a much better way.
The story of how I know I've been positive for that long is pretty cool -- I know how long I've been positive because I participated in a clinical study at Howard Brown Clinic (now Howard Brown Health Center) in the late 1970s and early 1980s that involved me giving regular blood samples, so they had a whole blood history on me right there by the time the HIV antibody test became available in 1984. They asked me if I wanted my last 10 visits' blood samples tested when I got my diagnosis, and those last 10 samples also showed antibodies, which took me back to 1979 for infection. But back in the 1980s, of course, AIDS was the new plague in town and nobody was surviving it. Now, it really makes an impression on newly diagnosed people when I tell them I've had HIV for more than half my life, that obviously they can survive it if I have.
Any tips for those who are newly diagnosed?
My tip for the newly diagnosed is to realize that you just found out you're positive during the best possible time. Not politically, of course, but in the best time as far as options for treatment and knowledge about when to start on meds. You can test HIV positive and not have to start meds for quite a while if your T-cell counts and viral loads are good. I know it's easier said than done, but I would encourage newly diagnosed people to take it easy. If you can take a vacation from work and be by yourself and meditate deeply, even just for a long weekend, do it! Realize that you can live for a long time if you adhere to a few simple rules, or you can ruin your health real fast and throw it all away. It is really up to the individual and how strong they are. I think it's perfectly normal to be afraid, shocked, depressed or suicidal, but you must also seek help from a community HIV organization, friends or whatever support network you have so that you can come out of the "HIV blues."
If you want to, can you share how you believe you acquired HIV?
I acquired HIV while using IV (intravenous) drugs. That is exactly what I was doing in 1979 and I knew I had to stop immediately, not just because of health issues, but because I liked it too much and knew I would overdose or go to jail. I stopped shooting up, but continued to sniff and swallow recreational substances for years after that.
What do you believe was your biggest risk factor?
After the IV drugs, it was sex. In the late 1970s, early 1980s I was having as many as 25 or more sexual contacts in an evening. Completely discreetly, not because I wanted it to be discreet, but because I was at every sex venue that I could get into and you don't talk much or share names and phone numbers when you're wearing a terrycloth towel.
What do you think is the first thing someone who has just found out they have HIV should do? What's the second thing?
First thing: Take a deep breath, hold it as long as you can, and release it slowly.
Second thing: Have a complete blood count, T-cell count and viral load test done. Then find a healthcare provider that lets you do the talking and lets you make the decisions.
If HIV were a person, animal or object, what would it be? Why?
If HIV were a person, it would be George Bush -- because he doesn't seem like a bad guy on the surface. He seems nice enough at first glance, then but he gets everything mixed up, just like the way reverse transcriptase works, like they're both working with new stuff and old stuff at the same time and mixing it all up. And little by little, HIV and Bush seem to work the same way: HIV eats your T cells and many other cells and wreaks havoc on both the male and female hormonal system, just like Bush has in the last six or so years chipped away at social programs and taken more and more money away from grants and programs that were already in place to help people with HIV. Every day it seems I get something from the Kaiser Foundation e-mail newsletter or one of the many other media newsletters, and there's Bush again, chopping away at HIV services.
If HIV were an animal, it would be a vampire bat. Vampire bats can bite you many times, but if you take care of the wounds and are healthy enough you will not die and/or turn into a vampire.
If HIV were an object, it would be the Borg, because the Borg aren't so bad as long as you let them keep assimilating you and you don't piss them off.
What do you think is the biggest problem facing HIV-positive people today?
The stigma that the family, religion and government lay on us positives. Also, I fully understand the ABCs of prevention ("abstain, be faithful, use a condom") and appreciate the effort to promote a safe and healthy message, but I think we need to turn these letters around and make that the CBAs of prevention. Condoms should be number one. Behavior and behavioral health should be number two. For those who can really commit to it, then naturally the best prevention tool is abstinence. But how realistic is abstinence as a goal, especially when you consider the numbers of youth and seniors who are becoming infected?
What is the biggest change you'd like to see in HIV care? How about in HIV education?
In education, we need to redouble our efforts to teach negative people how to stay negative. We cannot just put our money and effort into people who are already positive. Men, women and especially teenagers need to be educated about how to have healthy sex before they get a sexually transmitted disease, HIV or become pregnant at 15 years of age! And those of us working with community-based organizations and AIDS organizations need to be trusted with our prevention messages instead of being scrutinized to make sure every piece of prevention literature a community-based organization publishes isn't "indecent" or "pornographic." We need to educate people on a reality-based, level playing field. This is how most of Europe and Brazil and many other countries do it, and they have us currently beaten by millions of points.
When you look into your crystal ball, what do you see in the future for people living with HIV?
In the near future, I see a super HIV strain that is resistant to everything. I hope I'm wrong, but with this latest strain (e.g., the New York man who was infected with multidrug resistant HIV) that is resistant to every med except Fuzeon (T-20), how long do you think it will take before HIV figures out how to resist Fuzeon too, and then what? I hope I'm wrong on this one, but it's what I see in the near future. Farther in the future, I see this administration or another administration learning from the best teacher on Earth: it's own mistakes. I see us being more open about sex education and not worrying so much about why or how we have sex. The heterosexual community and the religious pundits are not doing such a hot job at being positive role models in the arena of sex and health education right now, so I don't see them having much reason to criticize the efforts of the gay community and other folks who are trying to be honest and take care of business.
How do you maintain a positive outlook?
This sounds cliché, but I believe in that paper that reads "all men are created equal." I believe, as long as we do not give up, we will succeed in making our local and federal government give us more funding and the basic rights that people with HIV deserve so that we may live with dignity, respect and, if we are gay, the right to see our spouses in the hospital emergency rooms without having to go to court. Keep sending letters to your representatives, keep marching, keep on truckin', keep on doing whatever it takes to get the rights that should be guaranteed to all of us by the Constitution.
What has been your overall experience with HIV treatment so far?
These last 10 years have been much easier. In the early days I had experiences with the overdose dosages of AZT (Retrovir) and all the other treatment problems that those of us who've been around since the beginning suffered.
What is your current CD4 count and viral load count? What was your first CD4 count and viral load count?
Right now my CD4 is about 500 at 25%, and my viral load is currently undetectable at under 50 copies. My very first CD4 count was 800; there were no viral load tests back then. My first viral load in November of 2000 was 1,700.
What HIV treatments have you been on, if any? Give dates, CD4 counts, and viral load counts, and the toughest side effects you've faced on treatment.
Some of these dates are fuzzy because I have a long history of meds. In 1987 or 1988, I was on AZT alone, 1,600 mgs a day. Then they added ddI and ddC. In 1995, I went off the horrible stuff and started Epivir (3TC) and Zerit (d4T). In 1999, I added Viread (tenofovir) to that regimen. In November of 2002, I had to change because my numbers were not so hot. I went on Viread, Sustiva (efavirenz) and Ziagen (abacavir) at that time, and this was my worst regimen ever. I could not handle "tripping" on Sustiva; I was a walking zombie. It was horrible -- I kept my partner up for a month and a half because I would wake up every night either screaming like I was being tortured or laughing and cackling like I was a character in the best comedy of the year. I wrote an article for Positively Aware about that, called "Sustiva Electric Dreams" -- God, I hated that stuff! I changed that regimen around January 2004 and went on Viread, Viramune (nevirapine) and Ziagen. I still experienced many side effects on those, mostly gastrointestinal and headaches. Finally I found my current regimen of Kaletra (lopinavir/ritonavir) with Epivir and Viread, and it's been smooth sailing.
How often do you see your doctor? How did you choose your care providers?
About every three months, unless something pops up. I chose my providers by word of mouth, listening to my friends' stories about their medical providers. Now that I have insurance through my new job that gives me more provider choices, I believe I have found the right provider. I go this Saturday for my first visit. My last care provider team at Northstar Medical Services has been very supportive by refilling my scripts in the interim.
What kind of relationship do you have with your care providers?
I like everything out in the open, no secrets. I tell them right away about my history so they can understand me and where I came from and how I was. I am essentially the same man; I have just "tweaked" my temptations, so I lead a healthier life now (no pun intended at all with the current mess we have with crystal methamphetamine) .
Do you have any health/wellness regimen that you feel helps you keep healthier?
I go to the gym three or four times every week, get massages and do yoga and hydrotherapy. I love it, and for 45, I've still got a hold on gravity, if you know what I mean.
Any adherence tips for other people on treatment?
It always works best for me if I incorporate my meds with meals -- for a long time now, I've been lucky enough to be able to take my meds with breakfast, lunch and/or dinner. For those who have to take meds on an empty stomach, I say do whatever is necessary: post-it notes, setting alarms on wristwatches, whatever it takes.
If you are single, how has your dating experience been since you were diagnosed with HIV?
When I was single, I assumed everybody I went to bed with was positive and therefore had protected sex. I never just came out with my status when getting to know someone -- I don't do that immediately, like so many people feel forced to do. It's the ultimate anticlimatic thing you can do when getting to know someone, even if you're both positive. It helps to talk about life, who you are and what your personality is like before you blast them with your positive status.
What is your strategy for meeting new people?
Nothing particular for me. I'm "lucky" in this area, in that I'm like a magnet for other guys who like my type.
How soon do you disclose your HIV status to the person/people you're dating?
As soon as I know that there is true emotional bonding taking place, when I know I want to take it to a serious level and not just have casual sex. That doesn't happen much anymore since Mike and I tied the knot, bought the house and adopted Papi, our pit bull. We're a family now and I don't go out much anymore.
Any tips for dating that you can share with other people who are positive?
They should go to HIV-positive sites like your Positive Personals. The sleazier Internet sites can be fun for eye candy, but there is too much PNP ("party n' play") going on in there. I also think you will find someone as you just carry on your everyday life. You'll meet people while shopping, running errands, working out, walking your dog. That's how I met Mike: I was walking my first dog, Dickie, and we started chatting. I believe it is true that you will find a date or a mate if you walk your dog every day.
What was your first reaction when you were told you'd received this award?
I was very surprised. You started the nomination process last October, I think? After I was nominated, I had my roof leak all over my home, a job search and all the stress associated with not knowing if I would land a job and keep health insurance benefits, blah blah. And then Jay Dewey sent me the e-mail, and I was overwhelmed with the honor of being appreciated.
Who would you dedicate this award to, if you could?
Could you share a little personal information about yourself?
I am a 45-year-old Cuban native who became a resident of the United States in 1967. I came out to my family when I was 15 years old -- I have had sex with many women and enjoyed it a lot, but I just happen to feel a more intense emotional connection with men.
Where did you grow up?
Havana, Cuba, for my first six years. From that time on, I grew up in Chicago, in what is now called the Lincoln Square neighborhood.
What did you want to be when you were a kid?
I wanted to be a drummer in a rock band. I loved Led Zeppelin. Their original drummer, John Bonham, kicked butt on those drums.
What kind of work did your parents do?
My father was an accountant. My mother was a nurse's aide first, and then went to school at night to become a cosmetologist, which she did for her last 20 years of employment. They are retired now and live in Miami.
What kinds of work have you done?
My first job was in the kitchen of the retirement home where my mother was a nurse's aide. I then worked as a telemarketer for Time/Life libraries and other customer service jobs and direct sales, until I landed a job with the American Medical Association in their publications department. That involved providing customer service for JAMA (Journal of the American Medical Association) subscribers and people requesting articles from the archives of their many specialty journals.
Who were the most influential people in your life, both professionally and personally? Why?
My mother, first of all, because she taught me that you make of yourself what you set your mind to do. In my community, BEHIV (Better Existence with HIV) took me on as a volunteer and their administrative assistant taught me how to use Microsoft Office programs. When I left the American Medical Association, we were still using MS-DOS! Also, Open Hand Chicago (now Vital Bridges) and their most cherished employee, Lori, helped me realize I could work or at least stay up and be alert once again from 9 to 5 Monday through Friday. This gave me the impetus to go back into the workforce after a decade on disability.
What do you like to do in your spare time?
I like to spin music in my basement like I'm back at the Paradise Garage, the best club the world ever had.
Tell us a little bit about your partner.
My partner is a wonderful man. His name is Mike, and he manages a staff of horticulturists for an interior plant design firm here in Chicago. He is unassuming and he accepted me without flinching when I told him I was positive. He is the most ethical and fair-hearted man I have ever met. I told him my status right away because the feeling was there from the start.
None of my own, although I did the father-figure thing for my brother after our father moved away. I am 10 years his senior, so it was like that when we were young.
We have a pit bull named Papi, who is fantastic and thinks squirrels are demons he must catch and bite -- other than that, he is a lap dog who lies around and watches TV with us. Before Papi, I had another pit bull named Dickey. Dickey helped me get out of the house when I was deeply depressed from HIV and suffering with neuropathy, anemia and thrombocytopenia. He was instrumental in my meeting Mike.
Where do you live? Describe your community.
It's called West Ridge. It is far north, right before the end of Chicago proper. It is a true melting pot of Europeans, whites, blacks, Jamaicans and Mexicans, though I think I'm the only Cuban around here for a few miles.
If you could live anyplace besides where you live right now, where would you live?
What's the biggest adventure you've ever had?
Last winter I took a "canopy tour" in Costa Rica that was about two kilometers above the trees with lunges of over 500 meters. It was fantastic, just like flying.
What are you currently reading? What book or author, if any, has had the biggest impact on you?
Right now I am reading Rising Up Rising Down: Some Thoughts on Violence, Freedom and Urgent Means by William T. Vollman.
What kind of music do you like? Which artists do you listen to the most, and who has had the biggest impact on you?
I like a bit of everything, but I love disco and jazz. Elton John and Patti LaBelle's music has helped me get me out of the doldrums many times.
Anything else you'd like the people reading this article to know about you?
Well, I gave up the drinking and drugging and replaced it with the YMCA, which has given me a new inner strength and mental concentration like never before. Working out has gifted me with an athletic build, so many people assume I'm some strong, intimidating thug-kind of guy, when in fact I am a romantic and a pussycat…unless you try to break into my car or home!
Interview by Laura Jones