Living With Hope

Sex happens in Technicolor when a person is on crystal meth. Or so people say. Mark S. King knows the answer for sure. After an uneven five years of recovery from addiction, which only recently scored him a full year of uninterrupted sobriety, King says he finally knows now that all the wild fun he had when he was high was just a mirage: "I had this chemical, fake view that (a) this is what real sex is like and (b) it was enjoyable. It's a lie that it's enjoyable. And the lie is being told by this disease of addiction that I have."

King, a boyish and muscular 49-year-old blond who lives in Atlanta and blogs about HIV for TheBody.com, is now taking baby steps out of what he describes as a "sexual Peter Pan thing for most of my adult life, thinking that sex was apples being picked from a tree and that it was an inexhaustible resource." A relationship with another HIV-positive man in Fort Lauderdale that imploded a few years back because of King's drug use has shown pr omising signs of new life, though, and King is planning to move back to Florida to give it another shot -- ever mindful, he says, that clean and sober sex is a strange yet potentially many-splendored thing.

"Sex is really important for a whole lot of reasons: establishing emotional intimacy with partners, experiencing physical pleasure, relieving negative feelings such as distress or loneliness, and also affirming your identity," says Robert Kertzner, a Columbia University psychiatrist with a large number of HIV-positive clients in his private psychotherapy practice. "And all the reasons for sex being important for someone's well-being remain true for people who are HIV-positive -- and probably are even more compelling for them."

But sex is often a thorny issue for HIVers, to say the least. The reality of life with the virus rears its ugly head in the very place where most people want to let it all hang out and forget their troubles. Many, instead of experienci ng orgasmic bliss, end up dealing with a laundry list of anxieties: worries about disclosure, transmitting the virus, or potential superinfection; concerns about body image caused by lipodystrophy or aging (King woefully cites his "flat butt" issues); feelings of shame over getting the virus in the first place; and for people like King, ripple effects from current or past drug use.

To that list add performance anxiety or just plain disinterest in sex. Although studies vary in their findings, it is clear that at least half of all HIVers suffer some kind of sexual dysfunction, including low sex drive, problems with getting an erection or with vaginal engorgement and lubrication, or difficulty achieving orgasm. Researchers believe the psychological strain of living with HIV is largely to blame. But, particularly for men, many antiretroviral medications can also cause sexual problems. Other medical culprits, such as low testosterone, diabetes, or cardiovascular disease, can throw their wrenches into the works as well.

Sometimes, though, it's the place where we expect to get help that can be a problem or at least contribute to existing ones. Julianne Serovich, a professor of human development and family science at Ohio State University who studies the psychology of HIV-positive women, says medical professionals in particular tend to overlook HIVers' sexual needs. "I think we are more concerned about how [HIV-positive] people are having sex -- what they're doing -- not necessarily whether they're enjoying it, whether it's healthy for them," she says. "We all have the right to have a healthy sexual existence."

Fortunately, though, there are caregivers who specialize in helping people turn their not-so-steamy sex lives around. "HIV affects people's sex drives for lots of reasons," says David McDowell, a psychiatrist in private practice in Manhattan. "But there are good remedies. It's amazing. You give somebody the right amo unt of testosterone, they all of a sudden perk up." That's all the more reason to talk to your doctor or a mental health specialist about possible solutions for your problems.

As for people recovering from addiction, like King, McDowell says there's a good deal of hope -- as long as recovering addicts can do the work to recalibrate their expectations of sex. "Sex then becomes a much more sensual, romantic, fun, balanced experience rather than this hyperkinetic overdrive," he explains. "It's going from an incredible, driving disco beat to a nice symphony. But it's in some ways much more enjoyable because it's about connection, not just in a very animalistic driving, predatory way."

Change of Plans
Rosario Melendez, a 36-year-old from San Antonio who is a self-proclaimed sexual enthusiast, tested positive in 1994 as her husband was dying of AIDS-related complications. After his death, "I thought my life was over," she says, "because they told me that I had only a year left. So basically I gave up on love and having kids. I started having sex with random people. Kind of like, OK, this is it. I'm going to die, so I might as well enjoy it, right? I enjoyed my life to the max."

While she was living it up under the maxim of "Stay up all night, enjoy, drink, have sex," Melendez says she still longed for lasting companionship. "But having to tell somebody that you're positive and facing the feelings of rejection? That's one thing I didn't want to go through again," she reveals. "I was afraid."

Eventually, she started falling for a new man. They had some good times together, sleeping in the same bed without any sex at first. "I went through hell trying to decide if I wanted to tell him" that she was HIV-positive, she says. "So finally I did, and he said, 'Well, I already knew.' I wanted to kill him! Afterward, I was like, 'OK, let's just hang out and have sex!'" The two have since married and now have nearly 4 -year-old twins.

Serovich, whose research has found that young HIV-positive women today have an increasing desire for motherhood, says a story like Melendez's proves that "HIV doesn't have to stop anybody's life in any particular area, whether it be family or their sex life or their work or their recreation."

Jack Drescher, a clinical associate professor of psychiatry at New York Medical College and the author of Psychoanalytic Therapy and the Gay Man adds that often "inhibitions reside within the person, not within the environment around them. People might feel that nothing is going to work until they tell the people around them, who have completely different ideas. One thing that inhibits people's relationships and their sexuality is they get so self-absorbed about what they imagine the response is going to be that they stop paying attention to what their actual responses are."

Scott Brynildsen went through a trajectory similar to Melendez's: di agnosis as a teenager, then a period of urgent sexual abandon fueled by thoughts of a supposedly bleak future. "Initially I said, 'I need to get laid. A lot. And then die,'_" the 32-year-old from Seattle says in an irreverent deadpan.

But while he too has since settled down with a steady partner -- his boyfriend, Christopher Adams, relocated from Chapel Hill, N.C., after the two of them met online -- Brynildsen lacks Melendez's enthusiastic lust. For the past four years an almost nonexistent sex drive has left him largely celibate. In the two months since Adams got to town, Brynildsen reports that the two of them have had sex only once. (Adams says it was twice.) "My sex drive just isn't there anymore," Brynildsen says. "It doesn't really faze me anymore. It's a perk when I do get off, but I don't really expect anything."

In the early years, he says, fears of rejection and of possibly infecting someone dampened his sex drive. Lately, while his T-cell count and viral load are fine since starting on combination therapy a year ago, Brynildsen has had nagging troubles with unexplained nerve damage in his left leg. Not feeling well and walking with a cane have left him depressed.

Adams, who is 27, tested positive two years ago. He says he hoped joining a gym and participating in some mental health counseling would help both of them develop a more fruitful sex life. "It's slowly coming together," he says. "I'm trying to come to terms with his form of thinking. And I'm compromising. I could have sex two or three times a day if I wanted to."

But that level of optimism isn't necessarily the norm. "Before you move on, you have to acknowledge that an HIV diagnosis is traumatic, and trauma can interfere with a person's sex drive," Drescher says. "You might want to think about whether you have adequately mourned what fantasies or what dreams you had for yourself for the future. If you've done that, then the question is, How woul d I want to be more sexual? What is it that I want? What is it I imagine my sex life looking like?"

Out of the Game?
Annie Elmer, who at age 52 has been seropositive for 20 years, lacks both the sex drive and the interest in compromise. Menopause, she says, ran off with the last remnants of her libido, adding, "If I added a man to my life, I'd have to make closet space for him. And I'm really set in my ways."

David Goldmeier, a researcher at the Jane Wadsworth Sexual Function Clinic at Imperial College London, says Elmer's point of view is common: "Lots of women find that it's too much of a hassle, so they don't actually go into relationships."

All joking aside, Elmer, who lives in Cottage Grove, Minn., says she'd rather not torture herself with the anxieties over dating -- when to disclose, whether to disclose, will men like her, etc. -- that she feels are best left to youth. She prefers, she says, to seek peace as an independent woman. H er armor, though, eventually reveals a bit of a chink. "There's a lot of acceptance most of the time in my life," Elmer says. "But if the right man comes along, I may open my mind and let that spark come back. But right now I'm dormant. It's really good. [Dating] only got me in trouble because of the emotional roller coaster."

Serovich says this sort of self-preservation is a healthy measure for many: "If they feel like taking care of somebody else is going to be more burdensome than beneficial, then they're probably making a good choice."

Robert John Weber Jr., a 51-year-old former ballet and Broadway dancer from Wanaque, N.J., has similar instincts that tell him to stay out of a rat race that comes with more baggage than he can handle. Having buried three partners and countless friends -- and having survived a quarter century with HIV only to have hepatitis C and Lyme disease tacked on in recent years -- he isn't particularly sure anyone wants to accept his o wn hefty baggage. "Who could deal with all this shit!" he quips. "So I try to stay away from any expectations in that direction and focus more on just what is going to make my life satisfying."

As for middle-age sexual dysfunction, Weber says he can still "hoist the sails" at will. "When I want to give myself a 'helping hand,' there doesn't seem to be an issue. I will generally watch some porn." He says he has an enthusiasm for Colt products.

Melendez seconds Weber's outlook -- on masturbation, that is. No word on any penchant for a specific genre of porn. "You don't need to have a partner to enjoy sex," she points out. "There's the do-it-yourself kind of making love -- just to relax and clear your mind. That's a good thing. It's good for me!" If her sex drive is ever waning, it's for a particularly mundane reason, she says -- like keeping up with small children. But she and her husband work to keep things spicy. "Using toys or playing roles," she explains. "Th at's what kind of got us out of the routine. The more we worked together, the more we felt like we can do more. We always talk. That's the main thing. It has been great."

Manhattan psychiatrist McDowell encourages HIVers to assert their right to a great sex life. "Sex is so readily available now in a way that it really wasn't, even a decade ago," he says. "It's a whole smorgasbord out there of, kind of, whatever you want. Great sex is in your head; it's not the body. So I think that people who allow their HIV status to impede them from having a fulfilling sex life -- it's a tragedy. Because it's not necessary. If they explore it and come up with some decent strategies, they can have a great sex life."

What about transmission and how condoms might trip up "the moment"? "When it comes down to it," McDowell says, "the real risk in terms of transmission is receptive anal or vaginal intercourse without a condom. So if you take that out of the picture, almost anythi ng else goes. When everybody gets hung up on how sex can't be spontaneous... If condoms are readily available, it can be pretty spontaneous. Every other kind of sex can be as spontaneous as you want and as dramatic as you want."

Fix What's Broken
Glenn Treisman, director of the AIDS Psychiatry Service at Johns Hopkins Hospital, takes a bit more of a measured approach and encourages HIVers to see any sexual problem they may experience not as an isolated symptom but as an indicator that they may need to take a step back and make more global changes in their lives. "Great sex isn't something that you can just pull out of a Cracker Jack box," he says. "A lot of people come to me with a variety of problems: sexual mistreatment, unreasonable expectations of what the world owes them or should give them, paraphiliias, addictions, and in order to get great sex they have to get that kind of stuff fixed first. It's not just a matter of going to counseling; it's a matter of getting serious about changing the whole course of your life. When the whole course of your life has changed, you can have great sex."

That's a tall order that Mark King hasn't shied away from, especially when he considers the benefits. Today, he's busy rediscovering his own sexuality -- finally growing up in middle age. And how is the sex?

"Better," he says. "Better and promising," he adds with a laugh. His boyfriend has been patient during the recent times they've spent together in preparation for King's return to Florida, he says. Once torn with anxiety over how he could enjoy another man without the added charge of methamphetamine -- and whether sex would trigger him to use drugs again -- King has been delighted to discover that sexuality can gradually evolve in ways he hadn't even allowed himself to believe.

"Much to my surprise, it's the emotional component that is the driving force," he says. "And that has never been the driving force be fore. The driving force was something chemical or it was pure lust. Sex keeps improving as I pull further away from drug addiction, as I relearn things. And you know what? He doesn't mind my flat butt."