Table of Contents
- Finding Out
- Lost in Drug/Alcohol Abuse
- Diving Into Alcohol
- Getting Sober, Starting HIV Treatment
- Dealing With HIV Med Side Effects
- Dating and Finding Love
- Dealing With More Side Effects
- Staying Informed and Volunteering for Clinical Trials
When Jimmy Mack discovered he was HIV positive, it was 1987 and an HIV diagnosis was essentially a death sentence. So instead of going to a doctor for treatment, he dived into a different kind of medicine: cocaine and alcohol. His journey out of addiction was difficult, but Jimmy has now been clean and sober for more than 15 years -- and he's got an undetectable viral load to boot. As Jimmy explains in our latest episode of This Positive Life, he is now happily partnered with an HIV-negative man, and he's OK with everyone knowing he's HIV positive. "I think that someone needs to be out there saying, 'Look, I'm HIV positive. I have a full-time job. I volunteer as an EMT. I have a healthy, normal sex life with an HIV-negative partner,'" Jimmy says. "Today you can live a long, healthy, normal life with this disease. There's so much hope."
Welcome, Jimmy Mack, to This Positive Life. How did you find out that you are HIV positive?
It was a Valentine's Day gift to me from my boyfriend. We were both living in Manhattan at the time. He said to me, "For Valentine's Day, we're going to get tested."
It was Feb. 14, 1987, when we went in and got tested. They took blood and told us to come back in two weeks. When we went back, he went first and got negative results. I walked in expecting to get the same results, but that woman said the most devastating words I had ever heard at the time. She said, "You're HIV positive." When I almost passed out, she said, "Honey, try not to think of it as a death sentence. You probably have a year to a year-and-a-half before you get sick and --" She left out the word "die," very kindly, because in those days people had a year to a year-and-a-half before they got sick and died. It was two weeks before my 30th birthday. I knew I would make it to my 30th birthday, but I figured that would be my last birthday. And I just turned 52 recently! [Laughs.]
Two questions: These were the dark years for HIV. Why was this a Valentine's present. Wasn't that a scary thing to do, back then?
It was, and I think it was a very nice gesture on his part. At the time, I was in a monogamous relationship with this person. I had been in a monogamous relationship prior to that for about five years. There was a period in between, which is when I got infected. It was just a very nice gesture from my boyfriend at the time. I had never been to a back room. I had never been to a bathhouse. So I thought, "Great, this is a no-brainer."
But was it a prelude to having an unprotected sexual relationship?
Oh, no, we were already having unprotected sex, he and I. And he's still alive and a friend and HIV negative.
Wow. So he might be one of those special people --
No. He never got it. He's always been tested. He's always been negative.
The second question is, where did you get tested? Do you remember?
I vaguely recall that it was a clinic in Chelsea [a neighborhood in New York City], in a kind of scary housing project down there. The rest of it's a blur.
What was your boyfriend's response?
I walked out of the clinic with tears in my eyes. He took one look at me and said, "Oh, no."
I said, "Yeah."
He said, "Well, what do you want to do?"
I said, "I can't really think about this." Because to think about it would be to envision all the hundreds of friends that I had already watched die from AIDS.
I said, "I need to get some vodka and some coke [cocaine] and I need to just get out of my mind for tonight." Little did I know, that would get me into my other disease, which is the disease of alcoholism and addiction. I spent the next five, five-and-a-half years completely out of my mind.
What happened with that relationship?
Six months later, he told me, "Ever since you found out you were HIV positive, you turned into an out-of-control alcoholic and addict. You need to get help, and if you don't get the help you need, I'm going to leave you." I couldn't, and he left me.
But that wasn't a wake-up call?
No, no. I figured I was going to die any day. Why should I stop drinking and drugging? It was my deep, dark secret back then.
I didn't tell anyone. My father's a doctor. My sister's a doctor. My brother-in-law is a doctor. I come from a family of physicians. I didn't tell anyone, and I come from a loving, compassionate, liberal family who outed me at the age of 22. They said, "If you're gay, it's OK. We will love you no matter what. Be open about it. It's nothing to be ashamed of, and it's perfectly normal."
I couldn't even tell them this. I was so ashamed of being HIV positive that it became my deep, dark secret. I drank and drugged over it.
Did you have drinking and drug problems before your diagnosis?
I believe that I was born an alcoholic (and I believe that I was born gay), but I was a very highly functioning alcoholic, at the time. It was not an issue and not a problem, but from that point on there was never a point when I went to bed sober unless I was too sick to drink that day.
You were living in Manhattan?
I was living in Manhattan. I was working in advertising, which in the '80s, was very enabling to an alcoholic. I had several liquor accounts. I had hospitality accounts. My boss was an addictive gambler who, as long as I got in before the first race went off at OTB [Off-Track Betting] (which was around 11:30), as long as I got in before that and he was able to go out the door, he was fine with whatever I did.
I was able to go out every night and get into work by 11. It was just very enabling for me and my addiction. It all came to a screeching halt in 1992 when my boss, who was gay and later died of AIDS, said to me, "Jimmy, you're sick and something's seriously wrong with you, and I'm bringing you to my doctor today. I've made an appointment." We went to the doctor. This was five years later, in 1992.
Jimmy, could you clarify? You discovered you were HIV positive, and you did nothing about it. You never went to a doctor?
You just ignored your disease.
Totally. I was in complete denial.
You didn't tell another person besides your partner?
My partner and that was it.
How many people did you know who died of an AIDS-related disease from the time you were diagnosed to the time you finally went to a doctor?
Oh, God. In those five years I watched so many people die.
What did you do, when you went to the funerals or you went to the homes?
So you just made believe that AIDS had nothing to do with you?
Yes. It wasn't something that I could deal with. I was in total denial.
You were frightened to death?
Oh, absolutely. I always say that in that period of time I lived, breathed, slept and pissed nothing but fear. I lived in fear -- complete fear. Every breath was going to be my last. And all I did was hasten my death by drinking and drugging all the time. That's how I dealt with it.
During that time, in terms of sexual relationships --
Ugh. It was sick. I wanted so desperately not to be associated with that disease that I even tried to crawl back in the closet. I was actually dating women and men; it was totally sick. I was completely out of control. It was difficult to have sex with women, but when I was out of my mind on drugs or alcohol I could have sex with anything. It was a dark, horrific time.
What kind of drugs were you taking?
My drug of choice after alcohol would be cocaine, but I would do anything, anything I could get my hands on, but a lot of cocaine.
Was methamphetamine (crystal meth) popular back then?
No, thank God. Thank God, because I don't think I would be alive today. I did meth once in that period when I happened to be in LA [Los Angeles]. I don't even remember why. I went to a bathhouse -- I started going to bathhouses in LA in that period. (I don't any more, but in that period of time I was going to bathhouses.) I went to a bathhouse in LA and did meth for the first time and got so stuck in that bathhouse in that mind frame doing that meth that I missed my flight back. I mean, I couldn't get out of the bathhouse, because I just couldn't leave. Then, when I got back to New York, this was in the '80s, I couldn't find it in New York. Nobody was doing it in New York. I couldn't find it, so I wasn't able to do it. That was my only experience with meth.
Let's return to your boss taking you to the doctor. Which doctor was it, do you remember?
He was on 78th and Park.
He was an HIV specialist?
No, he was my boss's general doctor. He just took some blood work, and he got back to me. My boss had taken me in because I was so tired all the time. I was exhausted, and I just looked sick.
This is what the doctor explained, "I've got a few things to tell you, quite a few things to tell you. First and foremost, you have AIDS. Did you have any clue about that?"
I feigned dumb. I said, "Really?"
He said, "Second, you also have chronic, progressive hepatitis B, which is a type of hepatitis that never goes away and just gets worse. Third, you have Epstein-Barr, or chronic fatigue, which is probably -- in addition to the other two -- what's making you so exhausted and tired all the time. Fourth, your liver is so distended that I can tell by that, and by your enzymes, that you are drinking alcohol excessively. You need to get help."
Did he give you a CD4 count and a viral load?
I don't think they had that. This was 1992, and I don't think they had them then.
Well, they had the CD4 count.
OK. He may have, but I don't remember what it was because I could care less. He told me it wasn't good. So that's all I knew.
But did he tell you that you had an AIDS diagnosis rather than an HIV diagnosis?
No, I remember specifically. It was AIDS.
So your CD4 count must have been under 200.
Yes. He said, "You have AIDS." The rest was a blur because I went from there and I told my boss then what the diagnosis was. I said I needed to take a vacation. I went on a vacation in Puerto Rico.
Down in Puerto Rico was the beginning of a kind of an eye-opener for me. I wound up going down there, and on the last day of my vacation, I found myself in a crack house. I was doing enormous amounts of rum and snorting cocaine. I wound up smoking cocaine and then doing heroin to come down from the cocaine. I passed out cold and when I came to the next morning, I crawled to the only person left in that room -- a 19-year-old, beautiful Puerto Rican boy -- I intended to ask him where my watch, my wallet and my shoes were. I was very naive, even though I was 35. When I put my hands on him, he was cold and gray and very dead. This kid had OD'd [overdosed].
My first thought was, "God. I wish it was me." That was my first thought. My second thought was about a letter that my sister-in-law had written me saying, "Jimmy you're an alcoholic. You're an addict. Whenever you're ready to get help, I'll make sure you get it." I thought about that letter, and I thought, "Wow. It could have been me who died here. Maybe she's right. Maybe I do have a little problem."
I left there, and I called her the next day and told her, "Listen, I think you're right. But I think that if I just lay off the illicit drugs, I'll be fine." When I found that guy dead, it was Memorial Day weekend of 1992.
That summer I drank every day, everywhere I went. I carried a flask. I had a bottle in my drawer next to me. I had a bottle next to my bed. I never did another illicit drug, but I drank so much that my family finally did an intervention with a priest. The result of that was that I told my family. My father gave me a prescription for Antabuse [a drug for alcoholism that produces unpleasant symptoms when users drink alcohol; the generic name of the drug is disulfiram]. I drank while on Antabuse, which made me very sick and gave me hives. And I still drank.
|Jimmy Mack with his family.|
When they did the intervention, the priest said to me, "Jimmy, your father said that with your diseases and the amount of drinking you are doing, you would be lucky to live another six months. So your choice is either to stop drinking and live or to continue drinking and die within six months. What's it going to be?"
I said, "I know I can't stop, so guess I'll have to die." He went back to my family and told them that. I have six brothers and sisters. My little brother -- who is like my soul mate -- sitting at this table, looked at me with tears in his eyes (he's the one who married the woman who sent me the letter) and said, "But we don't want you to die." All I could think of was how desperately I had to get out of that room at that moment and have a drink.
This is how I finally stopped drinking: I was on the care team of my dentist, Russell Arendt. A lot of people in New York knew him. At the time he was the most gorgeous man. He was the dentist of all the fabulous gays in New York at the time. He was dying of AIDS, and I was selected to be on his care team. Everybody on his care team was sober but me. I knew these guys had something I needed. He died so fast. He went through dementia and died so quickly that I never got a chance to ask how they did it.
I'm sorry, can you explain what you mean when you say, "how they did it?"
How they stayed sober while we watched this gorgeous man die. We would meet to learn how to take care of him. After these meetings, I would say, "Who wants to go get a drink?" They would all say, "We don't drink." How could they watch this gorgeous man die this horrible death and not drink? I didn't get it.
The night he died I was with him. I watched him die and left him with his sister, dead. That night, I drank so much that I actually couldn't go to work the next day. I was that hungover and that sick. At home, my phone rang and it was my former roommate, Eric Pfeifer, who lived with me for many years. He had left me to go to San Francisco because he was sick and dying of AIDS. He called and he said, "Jimmy, I'm in the hospital." He had been in and out of the hospital for two years. I said, "When are you getting out?" He said, "I'm not and I need to see you. You have to get here as fast as possible."
I left the next day for San Francisco, and I walked into San Francisco General Hospital and saw my friend Eric, who at the time was maybe in his early 30s, look like he was 92. He had no hair. He was on a respirator. He was skin and bones, and weighed about 89 pounds. He asked his mother and his lover Marcus -- who was one of my best friends -- to leave because he needed to talk to me.
We talked a bit and he said to me, "Jimmy, if you don't stop drinking, you will be the next person lying on a deathbed. And it will have nothing to do with AIDS and everything to do with the disease of alcoholism. You have to get the help you need!"
Like a good alcoholic, I tried to bargain with him. I said, "I can come out here and you can show me this wonderful program of AA [Alcoholics Anonymous]. I'll take care of you and you can take care of me."
He said, "No. That's not the deal. The deal is that right now you promise me that you'll get the help you need." I did, and he died with me that night.
Within one week, I was with two of my closest friends, watching them die.
The next day I made the most difficult call I've ever made in my life. I called my parents, who loved me unconditionally, and said, "I need help."
I flew back from there and went to Seafield, the drug rehabilitation center in Westhampton Beach, Long Island in New York. There are no coincidences. I grew up there. Seafield was just down the road from me. I went there, and I've been clean and sober ever since.
Were your parents living in Westhampton?
I grew up in Westhampton. My parents lived in Westhampton, yes. That's where I grew up.
What happened to your job?
They fired me, which I found out later was totally illegal. Alcoholism is considered a handicap, and they can't fire you while you are in a rehab, but they did. I didn't know any better.
It was so fortunate that you had the opportunity to deal with your drug and alcohol issues before dealing with your HIV. You knew all these other people who had only one choice, which was to deal with their HIV. It's amazing to me that you could ignore your HIV for so many years and still be OK.
We talked about the time when your boss brought you to the doctor. Did you get treatment then?
No. Actually when I went to that doctor in May of 1992, all they had was AZT [Retrovir, zidovudine]. He gave me a prescription for AZT. I convinced him that I also needed a prescription for hydrocodone [there are numerous brand name products containing this drug, such as Vicodin], or something like that, for a backache. I filled the hydrocodone prescription and took that. I didn't fill the prescription for AZT or do anything to treat my HIV until much, much later.
When I got sober, I became involved with the gp160 study out of St. Vincent's Hospital in New York.
How did you become involved in clinical trials? Why was that a first step for you? And what year are we talking about?
I vaguely recall an incident with my current boss [which led me to join the gp160 study]. They owned a private island, and someone had to deliver my HIV medication or something. I guess I was on some medication and they saw what it was. Word got out. My boss took me aside and said, "If this is what it is, if it's HIV, it's OK." His wife, now ex-wife, was wonderful. She said, "We're going to get you the best care that's available" and she got me involved with this trial for IL-2 [interleukin 2], I think it was, through Sam Waxman.
How long after you got fired from your other job was this?
I got fired from the other job in 1992. I went from there to managing a restaurant in the Hamptons that summer. Then I got involved in working with my current job, which I've been with since 1994.
OK, so in 1994, there was more than AZT available, I believe.
I seem to recall that it wasn't until maybe '95 that I started taking a combination of AZT and 3TC [Epivir, lamivudine]. I don't recall ever taking AZT by itself. I first went and took the two of them, because they started to discuss it in the press, and I kept up on it with them. So I heard them saying, actually this is working really well, people should do it. I said, "I'll give that a shot."
Did you contact any HIV/AIDS organizations? How did you stay up-to-date with information?
Project Inform and all sorts of things. I read everything I could. My sister is a doctor, and she read everything she could and sent me all the medical information she could get her hands on. My father is a doctor. I was getting information from all sorts of sources. GMHC [Gay Men's Health Crisis]. POZ [Magazine]. Everything.
Once I was sober, I realized that now that I had gotten one disease in check, I needed to take care of the other one.
Did you find a good physician at that point?
I did. I found a great physician in Westhampton Beach, where I was living at the time. Her name was Jennifer and she wound up going to one of the pharmaceutical companies.
She was so good, and she kept saying to me, "Jimmy, you know this disease better than I do, and that's the only way you are going to survive. Because it's so new, I can't keep up with everything, and I need to hear from you what you've heard, what you've learned, what you're experiencing."
She put me on testosterone replacement shots at the time. I went through AZT and 3TC. Then in 1997, I remember, I got my first real AIDS diagnosis; my T cells went down to about 150. I had cryptococcal meningitis. I had Kaposi's sarcoma. I was really starting to get sick. I believe that's when they came out with the protease inhibitors. I started combination treatment.
Were you on Crixivan [indinavir]?
So you were on Crixivan and AZT and 3TC.
Did you experience any side effects? Did you get Crix belly [fat accumulation in the abdomen caused by Crixivan]?
I have been on everything that's been out there, and I recall so many different side effects. They all are a blur to me. I do recall Crix belly. I do recall having peripheral neuropathy.
When I speak for Love Heals, which is an organization that sends people who are HIV positive to high schools to talk about their experience with HIV and AIDS, I tell these students that there's this myth that HIV drugs are wonderful. And, yes, they are. Yes, they keep me alive. But they can have horrific side effects. Peripheral neuropathy was one of the most horrible ones, but in my opinion the worst one is death.
The only times that I have been hospitalized in my life were twice due to an allergic reaction to two different medications that I was on. It was so severe that I almost died.
Do you remember the meds?
Oddly, it was Viracept [nelfinavir], which is unusual. With Viramune [nevirapine] it is very common to have an allergic reaction, but with Viracept I got it very bad. It was exacerbated because at the time I had just started Viracept, I was also taking IL-2, interleukin 2, which exacerbates any kind of symptoms you get. If you are on IL-2 and you get a cold, you end up feeling like you have the flu because IL-2 makes you so sick anyway.
But that's how I became an EMT [emergency medical technician]. It was December of 2001, and I was living in Manhattan. I was out in Southampton visiting my brother. I was on the IL-2 and I had just started the new regimen, which included Viracept. My sister-in-law was about to leave me with her kids. I suddenly felt so sick that I said, "Don't leave me. Something's wrong."
She said, "What's the matter?" I said I felt like I was on fire. She felt me, and she took my temperature. It was 104.5.
I said, "Call my doctor."
She called my doctor, and my doctor said, "Get him into a tub of cool water. Put ice packs under his arms. Get him cooled down and call me back in a half an hour. He should be cooler."
She called back and the doctor said, "What's his temperature now?"
She said, "It's a 105.5."
My doctor said, "OK, try to remain calm, but don't tell him now because at 106 he's going to go into convulsions and he's not going to last long. Get some blankets ready because he'll start thrashing around in the tub. Call 911, and tell them to get there as fast as possible."
They came in and this wonderful Irish EMT came up to me. Now I'm starting to lose my mind from the high temperature. I'm sitting in the tub, refusing to move. "I'm not going anywhere. I feel fine. I'm in this tub. I can't move because I'm just so hot." He convinced me to get out of the tub, into the rig, and took me to the hospital. I spent the holiday between Christmas and New Year's, the entire time, in the hospital.
What caused this?
The Viracept, the severe allergic reaction that I was having. I was covered in hives. It was just terrible. I said to myself, "If I ever move back to Southampton, I'm going to join this ambulance unit." Lo and behold, after living in New York City and London, I wound up coming back here to Southampton with my job and became an EMT myself. Because I can!
How long have you been an EMT then?
I've been an EMT since 2005. In 2006 and 2007, I won awards for going on over 100 calls. In 2007, I won an EMT member of the year award, in addition to my award for going on over 100 calls.
What's your background?
When I was in the city, before getting sober, I was in advertising for 12 years. Then I left to get sober, and wound up out in the Hamptons and met my current employer. I'm now in property management. I'm still doing that. So the EMT job is just a volunteer job. It's just a sideline.
But you live full time --
Out in Southampton, yes.
Tell me about your love life since you became sober and started treatment.
When I got sober, my first partner was somebody that I met when I went back to Puerto Rico, where I had my bottom. I went back down there, and I met the most wonderful Puerto Rican.
This was during my first year of sobriety; I think I had 11 months of sobriety at that point. And my sponsor was telling me, "Don't get involved in a relationship within your first year." Well, I met this Puerto Rican when I was counting days of sobriety and I moved him up and he came to live with me. Orlando Martino was his name. We were together for a while. We got married. We had a big wedding at my parent's house in 1995. We had a commitment ceremony at my parents' house in the Hamptons. They have a beautiful home right across from the ocean. We had 250 people.
We were together for quite a while. He passed away in August of 2002. He died of AIDS. I was with him when he died. I was also with my boss from the advertising firm when he died of AIDS.
The loss of my partner was the toughest one because at the time he was the love of my life. I watched him die a horrible death. He celebrated his 40th birthday in Cabrini Medical Center in New York.
Right after that I moved to London with my job. A year later I met the most beautiful, young French man I ever saw in my life. He was visiting a friend of his who introduced us. He's 20 years younger than me. He's HIV negative. He's not an alcoholic, and he is, in my opinion, the most beautiful man I've ever seen. We met and fell in love and we've been together ever since.
How many years have you been together?
We're in our seventh year now.
Wow. And he moved with you to Southampton?
Yes. He's here, and he's in college. He's much younger than me. He's going to college because we can't marry because we're gay. This country is very prejudiced when it comes to that, in my opinion. So the only way he could get here was through a student visa. He never went to college, so he's going to college here. So now it's seven years later, and he's still HIV negative.
How did you negotiate safer sex? Also, when you met people when you were trying to date after you got sober, how was disclosure for you?
In rehab, one of the most important things I learned was, you're as sick as your secrets. My secrets were making me so sick. After I came out of rehab, I was completely open about everything with everybody. My boss found out shortly thereafter too. I told my friends and family right out of rehab, "I'm HIV positive. I'm an alcoholic. That's the way it is."
How did they react?
Everyone was very supportive, even people who I was dating. I would tell it right up front. I would say, "This is who I am."
Did you ever experience rejection?
I recall one person I met when I was in early sobriety who was just adorable. I told him on the first date. We had not had sexual intercourse or anything like that. We had just kind of fooled around. I told him, "You have to know something. I'm HIV positive." He was absolutely shocked.
He said, "I just can't do this, because I'm not HIV positive. I just can't. You're the first person I've met who has told me that."
I told him, "I'm really not the first person you've met who is HIV positive. I'm probably not the first person you've dated who is HIV positive. I am the first person who has been honest enough to tell you."
So that was made clear, but he didn't want to go any further. I learned from that. I'll just tell people right up front. If they have a problem with that, good, then I don't need to go any further. I don't need to waste my time on them.
So it's less painful to tell people up front.
Right, before anything goes anywhere. I don't believe in secrets.
Do you think that people found it refreshingly honest, or were they turned off?
No. We're talking about a positive life and it's a positive thing. To me, today, I think of it as the greatest gift God ever gave me. When I found out my status in 1987, it brought me to my knees with my other disease of alcoholism, so that I could finally find sobriety and find a higher power and find myself. It was an incredible gift, and I see it as such. I tell people, "I have been so blessed to have been given this gift, and to have survived it and to have seen all I've seen."
I see it as something positive, so I put it out as something positive. People respond positively to it, because I think of it as a positive. I am not ashamed of the fact that I'm HIV positive. People go around saying, "Oh, I have a cold today" and nobody seems to care. Well, I go around saying, "Yeah. I'm HIV positive, so what?"
What do you think about how HIV has gone back into the closet, particularly in the gay community? You probably know plenty of people who are HIV positive, but they're not telling anybody.
I see that. And I hear that. I get so many calls from friends who test positive.
First of all, I'm amazed, and I think, "Wow. OK." We talk about it. They don't want other people to know. I think it's more of an embarrassment. They're afraid of people thinking, "How could they? In this day and age, when everyone knows how not to get it, how are they getting it? Are they stupid?" That's more the reason they want to keep it a secret than anything else.
What do you tell people?
I tell people, "When you're ready, you will tell others. It's nothing to be ashamed of." I'm very, very, very open and vocal about my HIV. I think that everyone should know I'm HIV positive because I think that someone needs to be out there saying, "Look, I'm HIV positive. I have a full-time job. I volunteer as an EMT. I have a healthy, normal sex life with an HIV-negative partner who is younger than me and very hot." I mean, I'm fine with being the poster child who says, "If you take care of yourself, you'll be able to live with HIV." It's nothing to be ashamed of. It really isn't.
Have you convinced anybody?
Along the way, I believe, yes. I've convinced a lot of people to stay sober. A lot of people to come out with their HIV status.
So are you still active at AA?
Oh, yes. I'm still active in AA.
Did you ever go to NA [Narcotic's Anonymous]?
I've gone to NA. I'm more active in AA because there are more AA meetings out here where I live than NA meetings. I used to do a lot of NA when I was in the city.
What do you think is the biggest challenge of living with HIV?
The stigmatism -- that people seem to think that if you're HIV positive, you're an invalid. When I go out to speak for Love Heals and I go to high schools, I say, "Did anyone in this room know that I'm living with AIDS?" Technically, I got into that category, and according to the government, you don't get out. So I'm technically a person living with AIDS, because I was there since 1997, so more than 10 years. More than 20 years HIV positive. Ten years as a person living with AIDS. I believe that once you're in that category, the government doesn't let you out of it.
I say, "Look at me. First of all, who would have known by looking at me?" Because I don't look like I have HIV. "And second of all, I lead a normal life. I'm fully employed, and I always have been. This doesn't have to be the death sentence that it used to be. The medications have worked for me. I keep up with my doctor. I don't smoke. I don't drink. I eat right. I exercise. I do everything right, and I'll probably live a good, long life.
Have you ever had issues with lipoatrophy, facial wasting?
I don't have that.
Yes, I have some lipodystrophy in my stomach, and I've been talking to my doctor about that. Basically, she's looking into some new diabetes medications that have shown some promise for that, but it's experimental at this point. [Editor's note: Since the interview, Jimmy started taking Actos (pioglitazone) for lipodystrophy. He says it seems to be helping.]
It doesn't bother you that much?
I've been able to suck it in, and I do exercise a lot. My arms have gotten a little scrawny so I exercise my arms and legs more to keep them from getting any scrawnier.
Does it bother me? No. I really look like I'm 50 years old. Most of the guys I know that are 50 years old have a bigger belly than I do, and have less hair. I look normal for my age, I really do.
What's your current treatment regimen?
Right now I'm doing Atripla [efavirenz/tenofovir/FTC]. [Editor's note: Since the interview, Jimmy changed his regimen to Prezista (darunavir, TMC114), Isentress (raltegravir, MK-0518), Truvada (tenofovir/FTC) and Norvir (ritonavir).]
That's it. One pill a day, in the morning. It's amazing. Although my doctor is concerned, because my viral load went from undetectable to hovering in the 5,000 to 6,000 range. For years, if it was under 10,000, I was happy. [Editor's note: Since this interview, and Jimmy's regimen change, he's been undetectable.]
How long have you been on Atripla?
I've been on Atripla for a couple of years now, but previously it was Atripla and Lexiva [fosamprenavir, Telzir]. So I was on Viread [tenofovir], Sustiva [efavirenz, Stocrin] and FTC [Emtriva, emtricitabine] -- which are the components of Atripla plus the Lexiva and Norvir. I was on five drugs total. I was undetectable for the longest time, and I said, "You know what, I want to go off those protease inhibitors, because I'm tired of having chronic diarrhea and feeling bloated and yucky."
My doctor agreed and said, "OK. Let's give it a shot."
I've been off the other drugs for about six months now and just on Atripla. She's monitoring me, and she is saying, "You know what? It was working for a while. It may not be now. We may have to add back in a protease inhibitor or two." So we just did a genotype, phenotype [drug resistance test]. I'm hoping to just stay on this. I love this regimen. I feel good all the time. There are no side effects.
Are you taking other things? Like supplements.
I take all the supplements. You name it, I take it.
How many do you take?
I have a drawer filled with nothing but supplements. I must take about 12 to 15 supplements a day.
What happened with your CD4 count?
My last was 1,000, which is phenomenal.
Pretty amazing. You started pretty low, so what pushed your CD4 count up?
What made it climb extraordinarily is the IL-2. Every time I did the IL-2, my CD4 count would double or triple. But those IL-2 treatments were brutal. I would be so sick and in bed with a fever and the chills, as if I had the worst flu in the world, from doing the IL-2. It was five days of that, but when I was done my T cells would double or triple.
Was your taking IL-2 part of a clinical trial?
That was part of a clinical trial.
I understand that you do participate in a few clinical trials, now and again. It's one of your interests.
I do, yes, because I feel that I'm healthy and strong enough to join a clinical trial. The research that comes out of them is phenomenal, so why shouldn't I?
I also did thalidomide [Thalomid], which wasn't a big winner. That didn't do so well. I did the gp160, which was the original vaccine. I did the precursor for Viread and FTC.
Are you thinking of joining other trials for the fat accumulation?
I'm currently involved in a trial at Stonybrook [Medical Center] for diabetes medication for lipodystrophy, because everything else is normal. My cholesterol is normal. I have a good heart.
Are you taking hepatitis B medications?
The FTC and Viread work very, very well against hepatitis B. My hepatitis B has been in check because of those. The FTC I want to keep, or need to keep, as part of my regimen because of the hepatitis B.
But you haven't had any problems with that over the years?
No, not really.
How do you stay on top of the latest information about HIV?
I read everything that I can get my hands on. TheBody.com is a particularly good one for current and up-to-date information on trials on HIV. I read everything.
Do you read conference coverage reports as well? Do you read the real research?
I do, actually. I try to get through them, but a lot of them don't make all that much sense to me.
So you haven't become a treatment geek. [Laughs.]
No. But usually they come with a summary, and I read the summary. At the conference, they go through so much information, and then at the end they summarize what they found was most important. That's what I read.
You told us a little bit about your dating history. I gather that you never really dated on the Internet.
I didn't, no. I'm not really that good with computers.
I ask because HIV-positive people who are dating are mostly using the Internet. You found a very nice partner and people are looking to do that. What advice would you give them?
Dating when you're HIV positive is as challenging as you make it. I've always put forth a positive spin on things. I love the fact that it's called "HIV positive," and this whole conversation is about living positive.
Everything I do has a positive aspect to it. I'll tell you something. When I first met my current partner, I thought to myself, "Is he flirting with me?" My first thought was very alcoholic. It was, "How could this beautiful, young, French, HIV-negative, non-alcoholic man be interested in an old, HIV-positive addict like myself -- a drunk? What could he possibly see in me?"
Then, I said, "Wait a minute. Take a deep breath here. I'm 10 years sober, and I am now able to see the light that comes from within. I know it's there, and I know that's what he's seeing, too."
I've had dental issues throughout my life from a car accident a long time ago. I've had to have my teeth replaced, and I went through this with him. I recently had to get implants.
I said, "Oh, this is going to be tough. I'm going to have these stupid plastic things I'm going to have to wear on my mouth. I'm not going to be able to smile." My partner told me -- he's so sweet -- "Honey, even without your teeth, your smile glows because it comes from within."
That's what he sees in me, and I think that's what others see in me. I know that's an ability I have. I am also good looking, but I enhance that through the fact that I put a positive spin on things, and I see life not through rose-colored glasses, but as a gift. I see everything as a gift, and I've learned a lot. Life is beautiful.
That's all so inspiring. So what would you say to someone who was just diagnosed? What would you tell them about having hope?
They should definitely talk to me. I'll give them hope. You can put my e-mail address in here. It's been 20 years now. I'm in the process of buying my first home and settling down with a beautiful young man who loves me for the person that I am. The medications and the fact that I lead a healthy lifestyle have allowed me to live a completely normal life.
In this day and age it's not like it was 20 years ago, when it was so horrible and shameful and just a death sentence. Today you can live a long, healthy, normal life with this disease. There's so much hope. It's incredible. I'm so grateful that I've lived so long to see things come this far.
|Jimmy and the love of his life, Mehdi.|
|Jimmy with the other love of his life, Scooby.|
|Jimmy's 50th Birthday Cake|
But I think the one thing that I would like to impart is that it's not something to be ashamed of. If you're going to be ashamed, it's going to eat you alive. It's like that old saying that I learned so long ago in rehab, "You're as sick as your secrets." If you're keeping it a secret, that means you're ashamed of it. And that's going to eat you alive. And when you're out there on a date, people are going to sense, "Hmm, something's not right. He's not telling me something."
When I come out with, "Wow, look what I've been through, and look what I have seen and this gift that has been given to me" people are very moved by it. And you know what? If they're not, I don't really want to have anything to do with them. [Laughs.]
So be authentic, love yourself and go out there.
Yes. You said it, Bonnie. "Love yourself." That's one of the greatest things I learned in rehab. I walked in there hating and loathing myself and I learned to like myself in rehab.
Then I learned, slowly but surely, how to love myself. And then, finally, at 10 years, I learned that I am a loveable person. Because I am able to love myself, others are able to love me too. And that's why I was able to meet this wonderful man who I am still with and who I adore.
So what did you do for your 50th birthday?
I had a big party. My sponsor, Jonathan, threw a big party for me in Manhattan. They had a big cake. He sent out an Evite to all the guys and 125 of my people came out to help celebrate. The Evite my sponsor sent out said, "Come help Jimmy Mack celebrate 20 years HIV positive, 50 years of a life well lived and 15 years living that life sober."
It was an extraordinary thing to have so many people show up from so many different parts of my family. My family, my friends. I get a little choked up, but it was amazing.
It's a major landmark.
All three of them! And on top of it all I'm buying my first home. Who would have thought?
Jimmy Mack, it's been incredibly inspiring to talk to you. It's really been a privilege. Thank you for your time. I'm sure lots of people will be contacting you.
Yes, it's firstname.lastname@example.org. Feel free to e-mail me there; I'll respond to anybody that e-mails me. I'm always happy to put a positive word out there for my HIV-positive friends.
This transcript has been lightly edited for clarity.
Since our interview took place, Jimmy's boyfriend won the Green Card lottery giving him full legal status in the U.S. Jimmy and his boyfriend are hoping to marry once (and if) gay marriage becomes legal in New York state.
To read Jimmy's blog, click here.